Reduction in tumour activity; talking cancer and blue legs

I am back from my second TACE treatment in Frankfurt. This time to my left lobe. Prof. Vogl was decidedly more chatty this time for the few minutes I saw him while lying on my back in my delicious hospital gown. He had looked at the MRI scan that I had a while earlier that morning and reported evidence of reduced tumour load and tumour activity. The latter being more important at this point I understand. This meant he could go ahead with the same cocktail on the left lobe. I will need one more go on each lobe - so two more trips to Frankfurt over the next 2-3 months. But to hear the understated Professor Vogl say he thinks we are ‘on a good path’ makes me feel confident and I was considerably happier having heard his conclusion. 

The days before going had been difficult. My left lobe is really quite uncomfortable, it presses on my stomach if I lie in a certain position and I have to prop myself up in bed. It had also affected how I walked which, possibly tension added to the mix, had given me a sore upper back where the muscles are taut. All these complaints seem to have melted away with new hope that things are going in the right direction (except the discomfort in my abdomen which prevents me lying on my front). It is amazing how your mental health so directly affects your physical health. I had a dark cloud hanging over me, worrying that the treatment may not have worked and wondering if this was the case, how many options there would be left given the tumour load was already quite high in the liver. The moment Prof Vogl communicated his conclusions all those worries just fell away. He was happy for me to return in early January which essentially gives me a free pass over Xmas and New Year. A wonderful few weeks to enjoy my family and friends and indulge in being extravagantly Xmassy. 

This has involved so far the purchase of a silver wool jumper, putting up the mistletoe lights; buying a small wooden German christmas tree ornament with lots of wooden decorations; making the annual advent calendar (a wooden calendar with doors for each day of advent which I fill with chocolates and sweets); retrieving the gold plastic wreath and hanging it on the front door (sounds tacky and honestly I have usually had holly wreaths but this gold one was quite pretty and I am now reaping the rewards of not having to pay for a wreath this year - felt very pleased with myself); purchasing 2 glass star candle sticks for our kitchen table (using my 20% off Home Sense voucher - which I get on certain days for being the nominated friend or family of Tom who is currently working as a Xmas temp there); buying some Xmas cards in my annual attempt to send my loved ones an actual physical message (usually the first half of my address book receive one, the next few possibly after Xmas and anyone after H is lucky to receive one at all); and the decision to join in the office competition for the best decorated desk space.

Ella came home one weekend recently with agreat friend of hers from Denmark who bought me a present of some make your own decorations. She patiently worked with me for far longer than should have been necessary to teach me how tomake them. My spatial awareness is quite simply hopeless. I did eventually master the heart shaped decoration but the star remains a struggle. My intention is to decorate my desk using my own almost home made decorations - which I reckon ought to win me some points for effort. We have set a date for a Xmas party and I have just bought the Xmas treewhich is usually an entire family affair but with half the family elsewhere - Rupert, Ella and Ned, Tom at work and William at the library as he has mocks next week - I made the choice all by myself for the first time ever. This will I know invite comments about either its height, the level of bushiness and how lopsided it is. I decorated it this evening with Tom and Will. Spotify has various Xmas song playlists and I have begun to listen to these almost on a loop and I have Xmas presents and wrapping paper strewn around the house as I decide to fill odd free moments with a bit of wrapping up, only to be distracted and wander off leaving it slowly taking over any spare space in the house. And then there are the carol concerts I am planning to go to. It all sounds rather desperate but it is in fact rather wonderful. If you think it might all be taken away and then you get it back you hoover it all up - no question. The children have also received their annual advent calendar from my Mother. She now has 15 grandchildren.  This is not so much a tradition anymore but an institution. Every year a huge envelope arrives with calendars for the kids. There is a bit of bartering about who gets what - Ella always seems to get the glittery angel or manger scene. This year she accidentally left hers at home so I am enjoying opening it. No holding back. I remember loving it when my calendar from Mum arrived at school. I would get out of bed first thing in the morning, it was always cold, and tiptoe over to it to open the little door. It was a countdown to going home and a to my favourite time of the year. 

The tree is now up. And we have had only one incident so far with the dog gobbling a fluffy sheep decoration. Actually I am not sure there was much gobbling involved, mainly just tearing it to almost unrecognisable pieces. I noticed something under the kitchen table and on closer examination realised it was a head. The body itself was strewn beneath the culprit's (Melka) favourite sitting place. 

My trip to Vogl this time felt more straight forward. One of my best friends Zoe, who I have worked with for many years, came with me and we basically non stopped talked and laughed. Her task as primary assistant involved, in addition to diverting me with sparking talk, carrying my bags on the way home, be with me through the day of treatment and then helpme take off and put on my trousers, socks and boots after the treatment. This time we worked out that she could come into the operating theatre and watch what was going on. The benefit of having someone else there is they can hear what is said and help you interpret it when it is all over and you want to dissect themeaning to the nth degree. She was sat by the wall with a ring side view and made to wear a heavy lead body protector to prevent gamma rays, or whatever rays the machines Vogl uses give out. This time round the time between being prepared and having the IV line up with anti nausea and painkiller injected in and Prof Vogl arriving was far shorter than last time. Last time I was definitely a bit whoosy and floaty when he arrived and did not really feel any pain just pressure - this time he entered pretty soon and I was still very much alert and not floaty at all. When his big needle appeared I asked in a frantic but pretending to be very together and calm type of voice, if he was going to wait until the painkiller had really taken hold. But he said it would eventually and just carried on. This really was quite painful and I definitely squealed loudly (this time he was going through the femal artery on my left) and he had to inject a good deal more local anaesthetic directly into the area - which left me with a totally numb leg for quite a few hours. One of the main impacts of the procedure is that for a couple of days it is very difficult to lift your leg or put it into certain positions, so I shuffled along the long corridors at Heathrow with Zoe laden down with all our bags as we tried unsuccessfully to flag down a buggy. 

This time I had cleverly remembered that as after the procedure it is impossible to wear my relatively tight jeans I needed to pack some soft leggings. Last time, once on the ward under observation, Sophie, who was my assistant number one for that trip, went in search of some cheap leggings so that I would have something to wear when it came to leaving the hospital. She returned with possibly the most ugly blue leggings with plastic dark blue stars splattered over them and elasticated bottoms. It would have been hard to have found anything more unattractive if I had paid her. But I had no choice, knowing that public exposure would be minimal between the hospital, the taxi and the hotel, especially as it was dark by the time we got back to our room. The next day my leg was not better and it was clear that I would have to wear this monstrosity of a piece of clothing to the airport and on the plane. When I arrived home I was very tired. 

Rupert had run me a bath and Ella made me my juice. Rupert chatted as I undressed and heaved my leg over the side of the bath ready for a good soak. I looked down and honestly my heart almost stopped. My legs were blue. Panic just welled up - the operation must have gone wrong, maybe the artery was blocked (my biology was never very good). As Rupert updated me on family and work I feigned total calm surreptitiously grabbing my phone which was on a stool nearby and started googling ‘symptom checker, blue legs’. The following medical conditions are some of the possible causes of leg blueness. Vascular insufficiency; coagulopathy; haematoma; peripheral vascular disease; arterial embolus… Or A bluish tinge to the skin is known as cyanosis. It is a very serious sign of low oxygen levels and build up of carbon dioxide’

I felt tired but I didn't feel that bad. My heart just started pumping and pumping and I felt light headed with shock. What was panicking me was not just the dangers of what might be happening physically but more concerning was what this would say about my quest to outsmart my disease and navigate my way through it all. I envisioned myself being rolled into A&E on a trolley; whispers ‘advanced cancer’; lots of well meaning pained faces; ‘tell us the event up to your legs turning blue and what other symptoms do you have’  ‘oh…so you have been to Frankfurt, arrived back today? what were you doing in Frankfurt’ (eye rolls - here we are mopping up after some foreign medical tourism disaster) - I could see the front page of the local Argus ‘woman who’s campaign we supported in mortal danger from complication from treatment in Germany’  - what about all those people who have followed my story and want to know how it goes for themselves or someone they love. I just sat in the bath staring at my legs, grunting acknowledgement in different tones to make out I was listening intently to Rupert, breath shallowing from shock, mind racing - do I call 999 now - perhaps I should rub and get some blood into the legs - stand up and gravity might help. So I stood up and began rubbing furiously. And then a very strange thing happened. The blue started coming off in my hands. And the penny dropped. This was not cyanosis or vascular insufficiency this was staining from disgusting cheap blue german (or possibly Chinese) leggings. Honestly the feeling of relief was almost worth the panic. And then the ridiculousness of the situation which has kept me going for a quite a while - making me chuckle every time I think of it. 

Working out what to do next withmy cancer treatment is difficult but I have discovered an amazing woman, who I mentioned before, she is Grace Gawler and has a foundation. She describes herself as a navigator. She has worked helping people with cancer navigate the many options and directions for years and is totally up to date with developments globally. She is connected with some of the most forward thinking oncologists and researchers and has helped me work out what to do given my specific situation. Unlike my oncologist, who is able to offer me only what is available and registered for use in the UK, she can identify potential therapies and advances wherever they are. This is tricky as I have to work any such care in with my oncologist who remains my primary clinician - but it puts him in a difficult situation.  Prof Vogl for example simply cannot discuss each individual case with the primary provider. He assesses each patient on whether their clinical condition and treatment profile makes them eligible for treatment and in my case Grace becomes the interface. She helps filter those people who she knows would meet his criteria(I send her my bloods and other information) and then if he accepts you she will help make the first appointment. I pay for Skype sessions with her to talk through my options but also for example my supplements. She has already provided me with information which has made me change some of my supplements. I have stopped coffee enemas during the chemo treatments - as while good for helping with liver toxicity - in this case I actually want to keep the chemo in the liver to do its job. I feel so much more secure having someone with her knowledge helping me work out what to do. As she is not a provider herself she is able to share information, contacts, advise from across the spectrum knowing what my own situation is - geographically, my family, job etc - anything that makes a difference to what decisions I might make. Ultimately I am responsible but I trust her and this has made my job of working out what to do much easier. I was in danger of becoming a fantastically broad generalist with not enough specific knowledge. 

I also share ideas with others I have met on line - often with broadly similar disease - and talk about what we have done and are thinking of doing and share information about treatments and advances or problems. The worldwide web really both a dangerous but also incredibly liberating place to connect and build networks impossible just a few years ago. I feel one of a tenacious group of utterly determined individuals who want to stay alive and are in search, as I am, for strategies which might help them do so. Thank goodness I did not die of some blue leg syndrome after my Vogl treatment or this would forever be on the web and deter countless people. That is the danger of the web. There is one blog about someone with advanced cancer, who was in a bad state and sought care from Vogl - it was not successful and he did die. But he also documented in painful detail the treatment and that it did not work and that he was too far gone. I don't know how many times I read this and it did deter me from seeking out Vogl independently. But Grace gave me confidence, she knows his record and he is well published. I could have been ‘British woman with terminal cancer seeks treatment in Germany anddies….Louise Howes of cancerispants fame died tragically after returning home from experimental treatment in Frankfurt this week. The treatment is not currently available in the UK for people with metastatic breast cancer. A spokesperson for the NHS warned patients to avoid being drawn in by claims of extended survival by clinicians offering care that it currently not approved for use in the UK’. But I was not - and anyway it is not experimental at all - but quite established for primary liver cancer and in some places for colorectal cancer metastasised to the liver. I am in no doubt it will not be long before it is made available to breastcancer where the disease is dominant in the liver. 

My recent meeting with my oncologist was a bit awkward as he clearly, and unsurprisingly feels that it is difficult for him to safely treat me if I go elsewhere for treatment he is not responsible for. I share details of the treatment. I would really like to be choosing the route I take more collaboratively with him but know that he has to be careful and is to some extent bound by what is approved in the UK - so how can he condone treatments he is not able to refer me to. But he has been supportive. But it is a quandary. I do not believe if I rely solely on treatments available in the UK that I will stay alive as long as I hope I do by taking advantage of treatments that are more targeted that I cannot get here. I know there is a risk involved but there is equally a risk simply working through the current treatments on offer here. So - what to do. Be bold as there is quite a bit as stake - my life no less. I do have a lovely team in the UK who care for me - I think they think I am bit of a trouble maker - polite but not easy to pin down. But one of them recently kindly said ‘I don't think anyone is judging you Louise’ and that made me feel better.

There has been a growing discussion about ‘How to talk Cancer’. There was an article in the New York Times last week and this was shared on the chat boards of Inspire (for people with advanced cancer). I was kind of surprised at the passion this discussion has prompted. I have always felt very strongly that honestly knowing what to say to someone with a cancer diagnosis is pretty hard and I therefore would absolutely not judge anyone for how they approach it, even if this means awkwardness and avoidance. It touches everyone very differently and mirrors peoples own mortality in someway, which make it doubly difficult to talk. Some people find it very easy, often you will find they have known someone close to them who have had or died from cancer and they navigate it more naturally. Others simply do not know what to say and worry that they may put their foot in it. I judge no one. Humour has always been a strategy I have used to get through difficult times and conversations - so I am the first to have rolled around laughing at comments about the savings I would make from not having to pay for hair treatments (honestly it really did save me quite a bit given I used to colour my hair relatively regularly). I don't mind if people talk about the fight or tell me stories of people who overcame it or ran marathons when they were ill etc etc. I know that these people basically want to share their love and be kind - they want to help make it better in someway and that intention is enough for me. So to judge them for the wrong choice of words achieves nothing. 

The New York Times piece is about what not to say to a cancer patient. Already I do not like the subject matter. But I kept on reading. It is by a Dr Stan Goldberg a prostate cancer patient and communications specialist at San Francisco University. That says it all already. He is a communication specialist which means he is professionally committed to helping people talk about all sorts of things. So it would make sense that when he got cancer he began studying peoples responses. Goodness i would not like to have been one of those people. How to talk cancer to a communications specialist - you would absolutely put your foot in it. He provides a list of dos and don’ts - already sounds complicated. If you didn't instinctively know what to say you would have to memorise a list of dos and don’ts for fear of messing up - best perhaps to avoid the topic completely and then you definitely wouldn't say the wrong thing. 

Among the don’ts were ‘preaching, unsolicited advice or recommendations, judgement and blame, uninvited discussions about prognosis, information about unproven treatmentsand your own feelings of distress’. Well I am sorry Dr Goldberg….I absolutely don't mind preaching, there maybe something useful in it; I welcome all unsolicited advice or recommendations as who knows there may be an amazing nugget in there that could make all the difference;  I am not really sure what he means about judgement or blame - perhaps people wondering what may have contributed to me getting cancer - which is actually quite a sensible line of thought, it is not simply bad luck - it is the result of a series of related factors a good few of which would have something to do with my lifestyle or previous medical decisions - in my case probably using immune suppressants for 2 years, eating badly and running round juggling more than should be humanly sensible - all giving cancer a chance to take hold by weakening my immune response - if I do not consider what might have caused it how might I make changes to try and moderate its progression? Then there are uninvited discussions about prognosis. There do exist figures on average survival depending on stage of disease but these are averages and were calculated from data that are already old - so the real answer is actually who knows and I totally understand why people might want to know as it helps them respond. If the answer is that this is a cancer that is very easy to treat and almost everyone survives, that is a good thing and people can feel happy for you and hopeful, it if is that most people do not survive for many years then they are able to respond equally appropriately and be more actively helpful and present - clear about the severity of the situation. 

What about ‘information about unproven treatments’ - this is a big one! What on earth constitutes an unproved treatment these days? I have come across many treatments for which there is a good level of evidence of benefit but without the standard of evidence required for it to be accepted as a mainstream treatment. A case of not enough evidence but not unproven. The outcome being these are not being made available to people who may benefit from them. Take metformin - a diabetic drug which helps restore the body’s response to naturally produced insulin and has been shown in many studies to have a protective effect in several cancers - why is this not available to advanced cancer patients? So please talk to me about any sort of treatment that may possibly help - I will then do my research and make a judgement as to the whether it is worth pursuing.  And finally talking about my own feelings of distress. Why not? This is the only human thing to do - acknowledge that this must be distressing and have a discussion about it. 

But this is my reaction to this list of don’ts. The discussion on Inspire simply illustrates quite how different we all are. Some people felt very strongly about how other people should or should not react and respond. So maybe some advice is useful and necessary.

A young man call Julian Quick who has a rare form of bone cancer found that some of his friends and family, and work colleagues were unwilling or unable to speak frankly to him about his condition. He was so frustrated that he started to work on a range of what he calls memes - or illustrations of awkward situations people have found themselves in with advice about how to talk cancer in such situations. He worked with AXA PPP  healthcare to help come up with some do’s and don’ts. He found comments about the savings he would make from not having to use of hair products in poor taste, but I think if he spent as much money as I used to at the hair dresser he may well have found these comments less crass. We are all different but there has until now been little advice for either those of us with cancer or those of us who know someone with cancer and these resources begin to fill that gap. They are worth a read and a share. 

The other side of the coin is how to talk to people if you are the one with cancer. I am not usually short of words but there are times when it is hard to know what to say, when I am not actually sure what I am feeling or thinking as these are not constants.  Having to talk to people a work, strangers or even your nearest and dearest at times. AXA PPP healthcare are about to release/have just released a new guide “Let’s Speak Cancer” as well as a video guide.  They are practical and give tips to those with cancer on how to talk about it. I have added the links above but also to the resource section on this site.

In between my work trip to Tanzania and two trips to Germany I managed some very special time away with my husband. He had a work trip that took him to the Maldives (there are worse places to have to go to for work) and so I went with him. We added 3 days on the end of his work trip and it was unforgettable. Our flights went via Singapore so we saw Ned and my sister for a couple of days. If only you could stop time now and then. Or rewind. Let's do that bit again! No - not enjoying this bit - press fast forward. A few pauses here and there would not go amiss. 

I made a  mad dash to Japan (which I thought was a bit closer to Singapore than it is) as I  wanted to visit a clinic which is pioneering a new immunotherapy. Immunotherapy is a term that describes a whole host of approaches and this one is one that Grace Gawler has suggested would be worth investigating. She has referred a number of patients there who are doing very well. So my sister, Cecilia came with me and we spent two nights in Tokyo. I had a consultation and gave blood and some white cells, so they can make up a vaccine for me in the event I decide this is the route to go. It takes 3 weeks to make up the vaccine so when I realised this I thought it would make sense to pay the extra to get there from Singapore so that they have what they need. They have since sent  my blood results back. They map the cancer immune system  in a very clear way and mine, at the time they took the bloods, does not look very impressive. I seem to be very low in natural killer cells in particular.

I am in no doubt that it will not be long before a cancer patient routinely has their bloods tested not only for signs of progression (e.g. cancer makers) and how the body is coping with treatment (white and red cells etc) but how the immune system is doing to inform oncologists about what the next step could be.

There is also an explosion in the use of genetic mapping - mapping the characteristics of the tumour. I have also decided to have this so we know what treatments might work better to help make decisions about next steps. These are not available on the NHS routinely but you can pay for them and some private insurance companies are approving them. This still means they are out of reach for the majority.  If it means it helps us work out how your cancer works and avoids me taking treatments less likely to effective, with all the side effects they bring, then it would be worth it. 

This link from Grace describes it in this way:  

Genomics-based diagnostic testing looks at changes occurring within an individual patient's tumour to identify options not previously considered.  We can now categorise cancer by the underlying gene mutations that drive its growth; instead of naming it by location, e.g. breast, liver, prostate, brain, cancers, etc. With genomic testing doctors have a better chance of finding gene changes causing or associated with your cancer. This information enables doctors to target your cancer in highly effective ways. Tailoring your treatments to your tumours individual characteristics. 

I am not sure that our health system is yet ready for this explosion of information - in fact I know that it is not. But one day it may be able to offer genetic testing to all (as happens to most in the USA) and match people with treatments. We still live in a country with the worst cancer survival in Europe and the tragic loss of AA Gill before the publication of his article in the Sunday Times magazine today highlights the lack of access to new drugs within the NHS. He had a type of lung cancer which had particularly good response rates to an immunotherapy called nivolumab. In the USA and much of Europe, and within the private sector here this would have been his first line treatment. On the NHS it was not available to him. Nivolumab may not have saved his life but he may have had a very good chance of more precious time with his family. As the rest of the world steps up to the revolution in cancer therapies those of us with advanced cancers have little choice but to keep up with research on new treatments and do what it takes to access them when the evidence suggests they are likely to give you the best chance at success. 

 

The Beast is Back, Professor Vogl and Anne Boleyn

No nose stud - first time in nearly 30 years 

No nose stud - first time in nearly 30 years 

I have been concerned that the cancer was on the move for a while, ever since one of my liver enzymes (GGT - a marker of inflammation) started to rise. Over the summer the rise was slow, but it has been steady. The bloods taken after my ovaries were removed had it at 116 (normal is under 40) - which pretty well confirmed I was going to have to take action soon. I was determined to go to Tanzania and had a letter from my oncologist for the insurance which simply stated that hehad examined me in September and that at that point I was fit and able to travel to ‘Africa’. Which at that point was true. But things change. Before even going to Tanzania I had arranged (with help from Grace Gawler who runs a foundation to support people navigate cancer options) to go to Professor Vogl in Frankfurt. 

Prof Vogl is an interventionist oncologist (aren’t they all?) and he is an expert at stabilising tumours and reducing tumour load in major organs (I am sure he describes himself very differently but this is my understanding). In the old days if the cancer had reached the liver the approach was more or less, bad luck, sorry there is nothing much we can do. Nowadays they are working out ways to try and keep you alive longer, with less toxic treatments so you have some quality of life - but they still approach different cancers differently. If you have primary liver cancer a very normal treatment is something called TACE - or transarterial chemoembolisation. Which to you or I means - chemotherapy injected via the hepatic artery to the blood supply to the tumours, and then embolisation means something like - and block it off so the chemo can't escape and the blood supply to the tumours is cut/reduced. I have attached a leaflet that describes it much better. For those with primary liver cancers a good 66% respond well and the tumours can be stabilised or pushed back for 10-14 months and if they are in good enough health then they can have it again and again even. This really can extend life for this group and can keep them going until they can get a liver transplant. 

For those of use for whom the cancer is secondary i.e. it originated somewhere else - in my case the breast, TACE does not seem to be considered in the UK. Presumably because they reckon that the cancer is already out the bag and so it is money down the drain. But for those of us for whom the cancer has remained (touch wood this is still the case) in the liver since secondary diagnosis it would seem sensible to more directly target the chemo to the tumours there (if they are under control they can't kill me) and in doing so reduce the impact on the healthy cells in the rest of my body. I knew that my options in the UK when it started progressing consisted of either an IV chemotherapy or a hormone approach, probably the IV chemo however, as once it is on the move in the liver you need to get it under control pretty sharpish and then try aromatase inhibitors (hormone treatment for oestrogen positive cancer). The IV chemo reaches the liver via the portal vein but the tumours in the liver are usually fed by the hepatic artery. SO if you inject the chemo directly via the hepatic artery you can use lower levels of chemo with much greater effect. And 

Prof. Vogl is top of his game. He not only does this for livers but lungs and other places. He also has a number of other approaches to reduce tumour load. In my case the tumours are spread over both lobes of the liver which rules out some approaches. Eg - resection - were I to have one or two clear tumours the liver could potentially be resected - i.e. the bit with the tumours cut out. As livers are so resilient (got to look at the positives) the liver will regrow. I had investigated this last time my liver got bad, but the treatments then worked so well I did not need to follow it through. This time it was the obvious next step. Only one part of the plan, as I do still need some systemic treatment as the cancer, even if not yet visible, is still around my body and so I will need some treatment to keep this also at bay. Having the tumours in the liver got under control (this is the plan) may then mean I can start on a aromatase inhibitor, perhaps a low dose chemo or an immunotherapy. 

So plan get tumours under control is underway.  This means money. About £5000 a visit (euro 3900 plus flights and hotel for me and someone to accompany me) a go. I will need 2-4 treatments of TACE because they can only do one lobe at a time and unless they get a spectacular response first go they are likely to need at least one follow up treatment. The treatments are every 4 weeks. 

We (my longest best friend came with me) arrived in Frankfurt (flights to Frankfurt are not cheap) and stayed in a hotel relatively close to the Frankfurt University Hospital. We reported at 7.30am in time for an 8am appointment. I had been warned that Prof Vogl has a slightly distracted manner so this, which I can confirm is true, did not bother me. The University Hospital is on an enormous site and there was quite a factory production line feel about the process. The Department clearly deal with hundreds of patients a week which I suspect affects their capacity to make any one feel individual. This did not mean they were unkind, more robotic in their smiles and responses. 

After a brief meeting with Prof. Vogl and payment for the procedure I was sent to have an MRI of my liver. This involved being escorted down corridors to a line of numbered doors, or cubicles as it turned out, each with a door to enter, a locker for personal belongings and another door on the other side which then led to a corridor to the MRI room. I entered door 11, removed all my clothes and jewellry. This included my nose ring, as MRI’s have magnets which would attract metal. 

I have not removed my nose ring since the year I had my nose pierced. I had it pierced aged 18 in 1989 (I was ahead of the crowd) in Bangalore South India during my gap year before going to university. I chose a local nose piercer, not wanting a more techno piercing with a gun. I reckoned that with so many millions of indian women having nose rings the traditional approach would be safest. This involved a sharp curved piece of metal which was inserted manually.  I remember, in my attempt to protect myself from infection, pulling out a little bottle of surgical spirit that I travelled with and requesting that the old man (he probably was not that old but at 18 over 40 looked pretty old), clean his hands and the equipment with it. I was travelling with a friend who was also going to have her nose pierced, but was less convinced so I had offered to go first. I knew if I made too much fuss she may back out so held in the screech of pain that should have accompanied the actual piercing (although I could not hold back the spontaneous tearsfrom the pain that filled my eyes). Forcibly smiling after the event I reassured my friend that it wasn’t that bad really. She certainly did not hold in the screech of pain which was loud and came with much swearing. But it was over fast and we went away with rather throbbing noses and gold plated studs. Being sensitive to most metals mine became red and aggravated so I went to have stud of real gold and a tiny diamond made up. I reckoned that I would not easily be able to buy nose studs in the UK in those days. I have worn this nose stud every single day since then. I could never work out how to take it out and feared that if I tried I would either break it, lose it or not know how to put it back in. A number of times during my life I have been challenged to remove it. Once I turned up for a waitressing job in my early 20s at the Queens Club in London, and they asked me to remove it, which I refused to do and was then told to leave. But my nose stud meant too much for me compared with that one off waiting job. When having operations and CT scans I have been asked to remove it, but when I have said I cannot they have simply covered it with a plaster. I had always thought I would take it out by the age of 30 (which then seemed ancient) as I considered it might stop people taking me seriously. My thirtieth birthday passed and I kept it in. Soon after I was interviewed for a job at Brighton and Hove Council. My children were very young and I really needed a local job to help me manage the children and enable me to finish my PhD (which meant needing money to pay huge child care costs). I remember seriously considering if this was the time I had always imagined, when I needed to grow up and take it out in case it affected my chances of getting the job. But I couldn’t bring myself to do it and walked into the interview room. I was at that time 7 months pregnant with William which was probably far more likely to affect my chances of being employed than a nose stud. And there, there sat the woman who would become my boss, herself with a nose stud. We do live in Brighton, so this should not have been such a surprise, but even then nose studs were far less common than nowadays. 

Below - me in my hospital gown and no nose stud and me at 18 in India the year I had my nose pierced 

Anyway, this was my first MRI scan and clearly the risk of the magnets attracting my nose stud gave me very little choice. I simply had to remove it. I had seconds to do so and was all in a fluster ready to mourn the loss of this little friend in the event I had to break it to get it out, but was surprised that it was a relatively straightforward affair. What was far more likely was that I would then lose it as it is really very tiny and I had no special case to put it in. I put on the standard, do up at the back hospital gown and came out the other side of the cubicle, locked the door shut and waited to be escorted to the MRI scan. An MRI is also a polo like round shape but the hole is much smaller so when they wheel you in it feels very claustrophobic as everything is so close. It makes a loud clanging sound when it starts working. It took about 10 minutes in this position. I am not claustrophobic but it is difficult not to feel anxiousin this position so I started my distraction techniques. Strangely what came into my head was Anne Boleyn. I read a book last year about her last weeks before she was beheaded and remember considering how she might have kept it together knowing the certainty of death was so close. So I began to talk to myself in my head, think of how many people, like Anne Boleyn have had to face far worse. What about those locked away, throughout the ages, knowing they would be tortured, that no one would hear or come and save them and no one would care when tossed cold and in pain, back to their cells. Very dramatic I know but it worked. It made any anxiety about either my broader situation or that 10 minutes in a small tube a lot easier to deal with.

I was then directed to a theatre. I walked there through corridors, including workman as there was quite a bit of building work going on, holding my bag of clothes in one hand with the other grasping desperately at the hospital gown, trying to protect my modesty from behind. The little bows that canbe used to tie it up to keep it together are pretty difficult to do up given they are behind you, so essentially my bottom would most definitely have been visible had I not grasped the edges of the gown together. In the theatre there was a cubicle for my bag of clothes and the nurses indicated I should get onto the bed where they started preparing me. Smiles and politeness but I still felt rather like just another poor soul. This did not bother me, I would prefer the fit as many poor souls in this factory line efficiently than waste any more time than is necessary being too friendly. There were about 2 or 3 nurses fiddling with the machine, inserting a cannula in my arm and hooking me up to an IV of fluids, anti nausea medication and morphine. A very beautiful doctor came to check it all. I had not known quite was going to happen and was nervous. Not so much about the procedure but about the fact that Prof. Vogl would now know the extent of the spread in my liver and I could not decide if I would ask him what he could see or even if I would try and look on the screens that were visible to help him guide his work. I had wondered about the pain of the procedure also. The unexpected morphine floated through me and took away all my anxiety. It was rather lovely and I have always thought, as I did when I had a drugs prior to my generalanaesthetic a few weeks ago for the ovary removal procedure, that as long as these drugs exist perhaps the end will not be so bad. Not only can they protect you from pain but it is the mental anguish I would want to be most protected from. I decided I would neither ask him what he could see nor try and look. I worried either may result in some information that I would not be able to manage and which would haunt me daily until I returned to see if and how effective the procedure had been. I also felt that Prof. Vogl would not be a man to mince his words and preferred to have Grace as the interpreter. 

I lay there for a while with nurses being busy around me and eventually Prof Vogl arrived, all gowned up. I had had antiseptic smothered over my groin area and a material cover laid over me which covered my whole body bar a window to the groin. I just looked up to the ceiling and waited as Prof Vogl injected some local anaesthetic and soon began his job, inserting a line up my femoral artery to my hepatic artery. I could not tell really what was going on but he eventually asked me if I could feel anything, for a couple of seconds I could not and then suddenly there was a whoosh of what felt like cold liquid racing around the shape of my liver - clearly he had injected the chemo. It was uncomfortable and quite a shocking sensation but quick. I am not entirely sure what he was doing next but assume this involved the embolism part of TACE - i.e. closing off the blood stream to the tumours so that they are not only poisoned by the chemo but starved of their blood supply. He had chosen to do the right lobe of the liver, which was clearly in a worse state, although my left lobe is the one I feel the most as it physically protrudes from the centre of my upper abdomen between the ribs. Perhaps it is because the right lobe is so much larger that it was key to get this under control as the liver can work relatively well even with quite a bit of it covered in tumours. The whole procedure, bar preparation and finishing up took probably less than 10 minutes. 

In a later debrief with Grace (who goes through the cases with Prof Vogl , she knows and understands him and so can help interpret as well as know to ask the right questions), she said that I have substantial tumour load around the central area of the liver that is close to my stomach and aorta and we need to get this under control. Horrible words, substantial tumour load. But I am trusting that Prof Vogl is the best person in the world to get this under control if anyone can. I will have to wait a month for my next appointment at which time they will do the left lobe (unless clear that the right lobe needs more attention). 

The Line in through the hepatic artery - yuch 

The Line in through the hepatic artery - yuch 

After the procedure Prof Vogl left with few words and the nurses finished getting me ready to move. They transferred me to a trolley bed and wheeled me to a ward for 3-4 hour observation. I was not to move for this time to ensure that the femoral artery was safe and I did not start bleeding. I was still under the influence of morphine so lay there drifting in and out of sleep until my best friend came up from the waiting room to distract me and help get things like water and my book into a position that I could reach given I was unable to move.  My blood pressure, temperature and pulse were taken regularly and the time went by quite fast. I was then told I could get up and leave. I had read an account from another woman who was treated by Prof Vogl of what she had called the Vogl shuffle, which I realised I now had. I basically could not lift the right leg up for 2-3 days so climbing stairs and getting into cars was a bit awkward. It was also the discomfort from where the line had gone in that bothered me most that night. 

We made our way down to Prof. Vogl’s office again where they assumed I had had the post procedure CT scan. We got slightly lost in the system and hung around too long before we finally got a call for the CT scan - which took seconds. It was immediately sent to Prof Vogl who I then saw for a couple of minutes as he checked all looked ok after the procedure and I was safe to go and said he would decide what to do next when he sees the scan next time. And that was that. We made our way in a taxi to the hotel and spent the rest of the time, until the next day early afternoon,   when we made our way to the airport. With all the lying around time I was able to get quite a bit of work done. It is efficient time - I can't move, I can’t be distracted and work keeps me engaged. 

The following days and weeks were far worse than I had anticipated. I think I had thought that because the chemo was targeted I would feel bad for may a day or two and bounce back - but in reality I felt ok for a couple of days, but very tired and then I started feeling worse and worse. I investigated TACE more and read that this does happen. The slow release of the chemo and leakage into the system. There is also adelay for the impact of the embolism to be felt. The liver was clearly angry and felt more swollen, or at least more ‘alive’. I felt wobbly, tired, needed to rest much more than normal, out of breath - just not great for more than 2 weeks and now a good 3 plus weeks after I am finally feeling more myself. Only to prepare for round two. At least this time I will be more prepared and in the intervening time I am trying to avoid thinking about what the results might tell us about how effective it has been. It certainly feels more settled on the right, not on the left however.  

I continue with my oral chemo, which I also discussed with Prof. Vogl and I have now written to my oncologist in the UK to explain my rationale for this action. My aim is to stabilise the tumours in the liver using what I consider is the most effective and targeted way to do so, which if successful will give me the opportunity I hope to start on a new hormone therapy. I continue to investigate immunotherapies and have been examining something called AIET (Autogulous immune enhancement therapy). This is available in Japan. Just as with HIV where combination therapy became to key to controlling what is now a chronic disease it feels as if we are moving to a place where this could be the key for cancer also. Combine therapies to trick the cancer and keep ahead of its mutations to keep this disease chronic not fatal. But we are so early and new approaches are bursting up all around - how the health systems will navigate their way through these to determine which are the most effective combinations for which cancers will require time and some bold thinking and risk taking. In the meantime people like me, and there are many around the world, are taking this challenge into our own hands. Money is the main obstacle but mothers who want to be alive for their children are a pretty determined lot and this makes us very resourceful. Whatever it takes to stay alive. In doing so we work with experts like Grace to navigate the old, new and even newer treatments in our quest to stay alive. In my experience each Doctor is limited by the breadth of their expertise so as science advances they cannot either keep up with all the developments, or make risky choices on behalf of their patients if they cannot be sure of the outcomes/ risks and so they stick within what they can prescribe and advise. There have been no new treatments (I lie eribulin has finally been added to the list of chemotherapies available to people with advanced breast cancer in the UK at last) - but apart from that there have been no new treatments for breast cancer for far too long in the NHS. There are treatments in the US now, routine genetic mapping of tumours which are simply so far away from being available to women in the UK that it feels criminal. The costs I know are prohibitive but with Pharmaceutical companies being even more profitable than oil companies somewhere there has to be room for negotiating prices for treatments which might actually mean they can be used to do what they were designed to do - extend and improve quality of life.

The danger is that while doctors or scientists know more and more about less and less until they eventually know everything about nothing I need to avoid ending up knowing a little about more and more until I eventually know nothing about everything.

Adapted from not sure who

The week before my visit to Professor Vogl I flew to Tanzania. I had been holding my breath that I would in fact be able to go. There were many bits of a jigsaw that needed to be in place. I needed a letter from my oncologist to say I was fit at the point of examination, for the insurance company. My appointment with him happened conveniently just before the signs of progression became very obvious. There were various hurdles to fix the meeting for the week I knew I could travel. I do not want to advertise my health issues. And I needed to stay well enough. There was quite a bit at stake had I needed to pull out, not least I would appear entirely unreliable and this important meeting that had required a number of key people to be available would have had to be cancelled with the implications of that. I was suspicious things were getting worse both after the blood test after my ovary operation which showed the inflammation marker in my liver rising to a not insignificant level and then worse, I began to feel my liver. It was at this point that I fixed my visit to Vogl for just days after my return. I was not going to panic and pull out - two fingers to the cancer I thought. How dare it disrupt me in this way. And so, with a slowly but notably swelling liver I went ahead with my plans. 

Anyone who travels around Africa will know that it is one of the least well served parts of the world in terms of air travel. There are few direct flights anywhere and most routes require you to go via one of the 3 main hubs - Nairobi, Addis Ababa or Johannesburg. When I used to need to visit Malawi and Tanzania in the same visit, despite the two countries being direct neighbours the only way to fly there was to take a plane from Lilongwe in Malawi to Nairobi and from there take another plane go back on yourself to Dar es Salaam. In fact it is even more bonkers than that as the Lilongwe Nairobi route stopped in Zambia on the way - and if you look at a map of Africa you will see that Zambia is in fact in the opposite direction to Nairobi meaning you flew out of your way and then back again at least doubling the time on the plane. It would take me a whole day to make this relatively short distance. This visit to Dar es Salaam I took an Ethiopian Air flight via Addis Ababa. It was due to leave at 9pm on the Saturday, I would have a four hour stop over in Addis and then arrive in Dar around early afternoon which would get me to my hotel by around 5 or 6pm given the time it usually takes to queue and get a visa on arrival. My first work meeting was at 8am on the Monday. 

We sat waiting to embark. 8.45pm and nothing. 9pm. Nothing. The flight was being not being managed by Ethiopia air staff but Star Alliance which meant that when anyone inquired what the delay was they did not seem to have the slightest clue. 10pm. Nothing. Passengers started getting a bit restless and feisty with more and more going to the desk to find out what was going on. Finally there was an announcement. The aircraft had a technical fault and engineers were trying to sort it out. Hmmm. I hoped very much it was the lights in the toilet. In fact it turned out, allegedly, to be a special screw that was missing. They needed to find out if their colleagues at British Airways had one they could use. And so we waited to find out. No. They did not and the only place they could now source this screw was from Frankfurt which meant the plane was grounded and they had to put all 300 plus of us up in airport hotels, which we finally got to around half midnight after working our way backwards through the terminal, out through immigration to pile on to waiting buses. The hold luggage was to be kept on the plane over night, so any thought of baling would be impossible - although the next day some people did which delayed us further as their bags were located and removed. In the end the flight left at 1pm the next day. A day flight was in fact much easier, I had work to finish and this would have been hard on a night flight and I would have had little time at the hotel before my first meeting had I arrived when expected. At this point I had no clue at what time I would in fact arrive in Tanzania and managed to contact the travel agent to be told I had been booked on a night flight from Addis. In practice this meant that when we landed in Addis, rather than a four hour wait a bus took those of us travelling to Dar from one plane direct to another. Rather efficient I thought - and I finally arrived in Dar in the early morning of Monday. After the visa queue I was not in bed until 3.30am. I had little sleep and wondered what all this was telling me. Travelling can be stressful. Should I be putting myself through this. I was tired but not stressed, except perhaps about my liver which was causing me discomfort. Livers do not have nerve endings so the discomfort was from the actual bulk of it pressing on my stomach and a hernia I have had since a child above my tummy button which has never given me any trouble until the last year. The work was relatively smooth. There was one slight blip when I went for a 5 minute lie down during one lunch break as I was really exhausted and needed to just close my eyes and have some time out. The next thing I knew my Tanzanian work colleague was tapping politely on my door. I had fallen deep asleep for 25 minutes. As I was the facilitator for the meeting it wasn't as if I could slip in the back door and pretend I had been doing some unavoidable really important work which had unfortunately way laid me. So I walked boldly through the front door apologising that I had been doing some unavoidable really important work which had unfortunately way laid me, looking as confident and together as I could. 

Apart from the painful traffic jams in Dar on the way to the airport the return journey was more or less straight forward. A state of emergency had been declared in Ethiopia, but you would not know it waiting for 6 hours at the airport for my connecting flight home. I felt sad however. I was more tired than normal when I arrived home. I cannot pretend all is the same. I was such a physically robust person and now I feel so feeble sometimes. Accepting that life is different and will not ever look the same again is hard. Accepting the uncertainty, the changing role at work given my inability to be as physically present as I was before my diagnosis is hard. I remind myself of how lucky I am and counsel myself that this is my path now, there is no point looking back just make the most of now. Usually I am quite good at this but the trip to Dar was a concrete reminder. I used to do trips like that all the time, perhaps it was this that so starkly highlighted my reality. It was not just a normal work trip. Nothing is normal anymore. 

MOre about TACE

MOre about TACE

Surgical menopause - On the Front Line

Last Thursday I had a bilateral salpingo oorpholrectomy - which means removal of both ovaries and fallopian tubes to you and me. My cancer is fed by oestrogen and by removing the ovaries it makes me very much post menopausal and a pretty constant stream of oestrogen is removed as a result of this procedure. My cancer is extremely oestrogen receptive so I have been looking forward to just getting them out. Finding a time to have the operation during a period of stability was necessary. It was a bit hit and miss as I wondered if I would still be stable enough to go ahead. By having them removed the range of hormonal therapies I can consider increases as many of them require you to be post menopausal. Last year I was on Letrozole, which also requires this but instead of surgically induced menopause I had chemically induced menopause through weekly horse sized injections in my abdomen (zoladex). As well as hating them because they just hurt it also meant that for about 3 or 4 days after the injections I was particularly tired and flat. 

I have had the date of the operation in my diary for a while. 22nd September. As the date approached I made sure I would have people around me to help for the first few days. Ella came back from London, Uni does not start till next week and Rupert was not travelling with work. I cleared my diary for two weeks as I was not sure how long I would be physically out of action and was very busy up to the date as I squeezed in as much as I could before I was grounded. 

The operation was scheduled for the afternoon and was to an outpatient procedure. It involves key hole surgery, a hole through the belly button and two small holes above the hip bone area. But in the end I stayed over night as the operation started later than planned and there was no way I would be walking before it got dark. 

I had not given the operation much thought before the day, at least not consciously, beyond the practicalities. This was also a treatment in itself and I was happy that was necessary. When the day arrived I began to consider the symbolism of it for the first time. These ovaries have been pretty good to me. They gave me (with a bit of help) my 4 beautiful children. I certainly don’t need them for childbearing and the logic to remove them was good. But on the day I did start to feel a bit maudlin. I said goodbye to Rupert who had bought me to the bed I would recover in and then walked with a nurse to the operating theatre. Rather it was the room before the theatre where they put you to sleep. By this time I was wearing one of those delicious do up the back hospital gowns. I climbed on to the bed and loosened it so they could access the parts they needed easily and they covered me with a blanket. The anaethetist stuck something in my right arm through which the various drugs and fluids could go (hitting a blood vessel on the way and needing to re-site). I had been worried about my carpal tunnel but he said that the drugs would in fact help it - I can't remember how - something about relaxing the blood vessels (I might have made that up). As all this was happening the reality of what was about to happen and simply my situation and probably lots more related started bubbling up and I could feel my eyes stinging. I was about to burst into tears but just in timethey gave me the dreamy pre-med and the next thing I knew I was in recovery.

Apparently one of the anaesthetic drugs makes it feel as if time has stood still, so that whatever you were thinking about when you went to sleep you wake up thinking about. In my case this meant that as I slowly became aware of sounds and light, I couldn't really feel my body, I was like a floating head, but I could think and I just started crying. I was wearing an oxygen mask which meant that as I hiccoughed I breathed in huge amounts of oxygen. This was a strangely lovely feeling. I was not really conscious of why I was crying it just felt like a huge release. Tears were rolling down my cheeks. I could hear the voice of a nurse, like an angel, whispering that it was OK, that general anaesthetic can make people feel emotional. I was clearly not the first to wake up crying. I did not want Rupert to see any tears and mumbled through the mask to ask if she could wipe my eyes and make sure I did not look like I had been crying. Slowly my body came into focus and I was aware of some discomfort in my abdomen area but nothing dramatic. As I became more lucid they removed the oxygen and opened my eyes. There were other people on either side of me also in recovery but I had the same nurse keeping an eye on me, taking 5 minute observations for a period. And then I found my voice and we started chatting. I think I would call it more like verbal diaorrhea - we talked about motherhood, childcare, work life balance with kids and more. One of those mother to mother conversations that connect otherwise strangers so powerfully. 

I was wheeled back to my bed where Rupert was. Ella, Tom and Will came to visit briefly. Although I was lying very still, with white anti DVT stockings I didn't feel as bad as I thought I might, I slept pretty well and came home the next morning.  By then I walked to the car, very slowly mind, but I walked. 

It has been just over a week since then and apart from the first 2-3 days when I continued to walk around like a bent old woman (still want to be one of those), I watched a whole series on Netfliks (Stranger Things - brilliant - set in the 1980s - a time warp for me - no mobiles, no internet, no computers, it’s like a mix between a darker version of ET and Strange Encounters of the Third Kind - honestly it is a great watch). Physically I have recovered pretty well and am walking normally. The wounds were incredible - no dressings at all just glue. Very disconcerting to see my belly button stuck together - I hate my tummy button being touched so the idea that it has been more than just touched - it has been drilled into and light and camera equipment stuffed through it very disconcerting. It remains stuck together and the dried glue is almost off (very tempting to pick at it) - hoping I still have a tummy button and wonder what it will look like. Maybe it will look better than when I went in? It shows no signs of returning to its previous state and I have to admit looks the better for it. So perhaps I have inadvertently had plastic surgery to my tummy button.

The other scars are tiny. These are where they pull the unnecessary body parts out. I was never very good at biology or anatomy but I have some idea of how things fit together but not I suppose their relative size. Gauging by the size of the holes they were pretty small or at least able to squeeze through a small opening. 

The part of the process I had underestimated was not the physical healing of the wounds etc but the fact that this would mean a plummet in any remaining ovary related oestrogen. My treatments over the past 5 years have all chipped away at my oestrogen levels but this would be the final big push. Ella read somewhere that it takes about 3 days after the operation for the last of the oestrogen from surrounding tissue to leave the body so by day 4 my body was crying out ‘oestrogen! oestrogen! where the fuck are you?’. In practice this has meant some whole body hot flushes and the feeling occasionally as if I am having some kind of internal electric shock. The most unwelcome symptom in the very early days was a sudden feeling of deep sadness. I simply cried. Not just a little but a lot and frequently. As my mobility was restricted it was hard to get moving and do something to distract myself but even if I could I couldn’t unpack what was making me so sad. I know you might imagine what might be but I am really quite a happy soul despite what is going on and nothing had changed much from a week ago when I felt perfectly cheery. I don’t mind my family knowing if I am down when I really am down and even if I do end up having a cry in front of them occasionally, that is probably quite healthy. But I really do not want to be terminally miserable and cast a heavy depression over their lives. I want them to be surrounded by laughter and optimism most of the time. So uncontrollable sadness was not good. I clocked this was related to my operation and thought I had better read a bit more about it and see if there were any useful strategies to help. 

Well- first of all in my search I noticed that information about menopause generally seems to be written on a back drop of sickly pink. Why? It is breast cancer awareness month this month and I am surrounded by lots of sickly pink balloons. (by the way I get very annoyed when people with breast cancer get annoyed about the methods people without it use to raise awareness of the issue and try and raise funds and support for it - there was a recent spat where people shaving their heads in support of breast cancer were attacked by people with cancer who more or less said they had no idea what it was really like and they found it offensive - well I think that anyone who wants to do anything to raise awareness and support should be thanked - not lectured to as the intention is fundamentally good). Back to sickly pink balloons - why could they not have chosen bright happy pink ones? A matter of taste. For menopause however I do not like the pink at all. This dislike was aggravated by a very informative blog on surgical menopause. Pages and pages of it. Can you imagine - a whole blog on surgical menopause - and this was not one that interspersed the blog with light tit bits about every day stuff it was entirely focused on the many and varied consequences of surgical menopause. And it was all pink. 

These even Look like they could be escaping ovaries 

These even Look like they could be escaping ovaries 

According to this blog I am likely to suffer some or all of the following. My bones are going to get brittle. My skin will become dry and thin and my wrinkles will become more pronounced. I will lose my hair - or some of it as it becomes thin and more grey (I am not yet grey bar the odd one or two but this clearly will not last long). I will get hot flushes at night and at random times and sweat lots. My vagina is going to shrivel and become as dry as the gobi desert, prone to cuts and chaffing. I will suffer inexplicable mood swings and may suddenly feel very sad. I will become irritable and will be unable to concentrate for long periods. And my memory will deteriorate so I won't remember anything anyway. The answer, according to these essays (pages per symptom explaining exactly how the lack of oestrogen results in the symptom so you are in no doubt that it will happen to you) is HRT. Which of course people like me cannot use anyway - so that’s not very helpful. In fact, according to this blog HRT is so clearly the only way to avoid the above that I am absolutely certain the blogger is either a pharmaceutical company rep or someone paid by a pharmaceutical company to blog about the terrors of surgically induced menopause and the big saviour HRT. That would explain the very well organised blog site and choice of decoration. Not a typo in sight. Perfect grammar. No hanging sentences or long garbled phrases that you might expect from a real person :) .  Call it a blog and we won’t realise it is information being fed to us via the pharmaceutical industry. On the other hand perhaps it has been written by a genuine person, who was terribly affected by it and for whom HRT was her saviour and she felt compelled to tell the world. If so - I am sorry for being so doubting but could you please add some more information for people who can’t take HRT and please be less depressing - no wonder we end up irritable and moody. 

Who would employ a menopausal woman if they read all of that. I went through in my head how many people I knew who I was sure were either going through it or had already gone through it (admittedly not having had ovaries removed) and decided that there are really quite a few competent, healthy, happy and capable women around. Don't we have a female British PM and Germany has a female Chancellor and then there is Hilary - they can we hope concentrate for more than a few minutes. Compare them with Trump Kim Jong Putin and Mugabe. Unpredictable? Moody? What is the male equivalent? 

That is not to belittle the actual symptoms that I am or might experience and those that my fellow surgical menopausers may have. I may well become more forgetful (if this is actually possible) and my skin may dry and shrivel and I may feel sad sometimes but I will have to work out how to manage that - a bit more suduko and the writing of lists and post it notes; luxurious non toxic face and body creams and some good comedy; love and laughter. 

I do not really have any photographs to share this time as I thought snaps of my tummy button were not desirable. A snap of me crying uncontrollably? No. The only one vaguely suitable is of me as a baby in my pram. I have a look, I am sure I have mentioned before, which Rupert says I give when I disapprove or dislike something, a smell, an opinion and obnoxious comment (the content of a blog I do not like) and it apparently looks like I am smelling camel pee. Well I think this picture shows how long ago I developed this disapproving expression. 

I have been loved and looked after by my family and am preparing myself for what may be coming down the road. My liver bloods have continued to go up (the wrong direction) so I am thinking that sooner or later I am going to have to change course. I am trying to stay calm and philosophical and have some ideas of next steps if I need to do something differently. I have started GcMaf. I inject 0.5ml every 1-2 days and I take oral colostrum (from Japan). Let’s see if this supports what I am doing - it is steady as she goes for the moment - ready for an about turn if needs be.

During all of this I have continued with my day job (no point lying around watching TV series unless very good reason) and I will be travelling to Tanzania next week. I am working to support the Tanzanian Government introduce accreditation to health care facilities as part of a strategy to improve the quality of health care as part of German Development Aid. They do not know about my health situation, and I don't want them to or they might slightly lose confidence in me (!). This is quite a tricky path to tread. Having advanced cancer means life is very unpredictable and you cannot plan too far ahead ever. I wondered if I would be able to do this but for the moment, despite rising liver bloods I feel well, my oncologist was happy to write a letter saying at the point of examination I was fit and able to travel there (an insurance type letter) and this fits within our workplan. So I feel very grateful. Last year I thought that was the end. It is not the end!

Life, Love and Truly Scrumptious

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It is 30 degrees and I am sitting in the Botanic Garden Cafe in Gottingen. The flowers are fading,  a powerful visual reminder that summer is ending, despite the heat today. I am here for the treatment I continue to receive here, usually monthly but this time given the summer holidays, the gap was longer - about 7 weeks. I left booking somewhere to stayfar too long. Goodness knows what ishappening in Gottingen this week but I could not find a single airbnb or hotel in the central area and so am about half an hours walk away in the Hotel Astoria. Room 13 at the furthest end of a very long, yellow corridor on the first floor. The room overlooks a big red Mini-Mart and Toys R Us sign in bright lights, a road system and a car park. The room last night was stifling but with my eye patches and earplugs I slept ok. Before I came I had my routine blood test at home, which shows a continued rise in one of my liver markers. The others look OK but none are going down. I asked to delay the scan as I feel very well and have no obvious symptoms. Scan’s are the cancer sufferers nightmare. Their very prospect ties your stomach in knots as the results can mean your immediate future can change overnight and you temporary calm is destabilised. You need to go through the possible scenarios to simply prepare yourself, not only for bad news but what it might mean. Fear in a consultation can make you forget any reason and perspective so to pass through the fear in advance and consider what might happen and what you might want to ask when you go and get the results is a good way to prepare. But there is a limit to how many times a person (and their loved ones) can go through this so it was good to delay it. I am concerned that the liver bloods are indicating that the cancer is active again and I need to decide what to do about it. 

Next week I will have an operation to remove my ovaries and fallopian tubes - a ‘bilateral salpingo oorpholrectomy’. It is key hole surgery, which I think always gives a false impression that it is almost as straight forward as cutting your toe nails. In practice it involves pumping your abdomen with gas (which takes a good while to go down - ouch - and I have yet to work out how the gas is actually released - or is this too obvious??). They have to cut through some muscle and then cut the bits out and stop the bleeding with a bit of stitching somewhere along the way. It involves a general anaesthetic. I have had wildly differing descriptions ranging from people who almost went back to work a couple of days later to others feeling they had been kicked by a horse and it taking weeks before they felt themselves again. I would of course like it to be the former but I am not quite as robust as I used to be. Staying busy is a great strategy for good mental health in my view and so the prospect of being physically confined in anyway is not good. But I need this operation because firstly my cancer is strongly estrogen receptive and this will reduce the amount of estrogen in my body available to it and second it also opens up other hormonal therapies that require you to be post menopausal. Last year I was having routine Zometa monthly, a horse sized (possibly exaggeration but that is my view) injection in my stomach which I hated and threw me into 3 days of post injection symptoms. Using this type of approach is time limited and it is better at this stage to get on and get my ovaries out. There is a trial of a new hormonal drug I may be eligible for if I have confirmed progression,  but only if I am post menopausal. 

Then there are the after affects of surgically induced menopause. Hot flushes, reduction in bone density, dryness, skin thinning, hair thinning - basically turning into an old lady sooner than you might otherwise as far as I can see. But I have really been bombarded since my first diagnosis and have only variously experienced the above but think that for the most part I will not be dramatically hit as I have already had so many treatments to reduce my estrogen. Fingers crossed. 

While I am on a bit of a roll about my physical ailments (I do so hate to focus on the failing state of my body as really I have been running daily, juicing and feel great) - but I am going to mention my wrists. Over the summer I have developed terrible carpal tunnel syndrome. I was susceptible to it before my cancer and experienced it during pregnancy, but this is something else. My wrists are visibly swollen and there is fluid pooling in the backs of my hands. My right hand is worse than my left but both fizz and are numb on and off throughout the day. Anything that requires a pinching movement, even driving the car aggravates it and I have to stop or move my hands to relieve it. At night it wakes me 3-4 times, and almost always around 5am. Only sitting up and hanging my hands by my sides and shaking them at this time will relieve them. By the time I get out of bed in the morning I have absolutely no grip and it takes movement to get them going again - but even then I am unable to form fist as I used to. I am not sure exactly what has aggravated it but it is without doubt the result of the various treatments I am on and have been on. A lack of estrogen for starters can affect this - but I think it may also be immune system treatments. The bottom line is it is not going to go away and will most probably only get worse so I am on a mission to find a resolution. This is likely to be a carpal tunnel release surgery. Basically the main nerves that run through your arm to your hand go through a tunnel (the carpal tunnel) which is not very big. Any swelling or damage can put pressure squeezing the nerves and starving the hand. So what do you do? You ‘release’ the pressure through a surgical cut or two in the right place. Margaret Thatcher apparently had the surgery - not sure that recommends it - but she was a pretty busy woman.

The fizzing and numbness and lack of grip are bearable but completely aggravating. My knitting (my very untalented attempt at it which gives me such joy) has almost come to a halt as has my colouringand writing for any time is also very uncomfortable. I can, thank goodness, still type.  The bit that worries me most is that if I do not sort it out and I were to find myself - for the sake of being very dramatic - on my death bed - rather than soaking in love, attention and morphine I will be driven mad by the fizzing and discomfort made worse by lack of movement from my near to death lying down pose. I am not sure this jumps me to the top of any surgery queue - which by the way is as long as a very long thing - ‘Stage IV women, incurable, with carpal tunnel syndrome’ - they will probably slip me to the back of the list and hope nature is quicker than their waiting list. So I am investigating how to get it done privately. Things should not work like this but when you are where I am you have to take control. This will mean, among things, finding a time when I am in a stable state, not recovering from abdominal surgery, stable and with help to do the most basic tasks as if I have both wrists done at once I will be handless for a while. I have been spoilt over the summer as for most of it I have had almost all the children and still have Ella who continues to be my daily companion. 

All I wanted before the summer holidays started was to be well so we could spend time together as a family. We had taken 4 whole weeks to spend in France. My wider family joined and over August we simply had beautiful weather and such happy, happy times. We had A’level results and some GCSE results and Tom left us early to travel around Europe with his friends. We also said goodbye to Ned. Ned is spending a term in Singapore with my younger sister and her family. This was a plan of mine for a while.

After my experience in March when I wondered if I would see Xmas I have been facing up to my fears so they do not derail me. One of these is the prospect of Ned growing up without a mother. Of course I feel the same for all my children, as a mother is a mother regardless how old you are, but he is still a child. The others are already the formed people they will be and so nearly all into adulthood. For Ned I had a vision of me not being there and his brothers and sister being off at University, working or travelling and only Rupert and he at home. Rupert will have to continue to work even if he were to take time off or rearrange how he works, but for Ned’s life so far he has been surrounded by noise and bustle. The idea of Ned alone in the house after school or at weekends is unbearable. He also needs a mother figure. My sister lives in Singapore and has 4 children of her own, but they are younger than Ned with the oldest only a school year behind, so he fits well given their age ranges and now has experience of being the eldest. He and William visited her over Xmas and he built a nice relationship with my sister. So on compassionate grounds his current school is holding his place for a term while he spends a term there. For him this was an exciting prospect, he couldn’t wait. The school there were very good and accepted him and he now has a Singapore Student Pass. We facetime daily. I miss him. We all miss him. The house is strangely quiet. We can tell he is not aroundas apart from his obvious absence biscuit packets stay closed, there are no strange inventions or fire experiments and the number of experimental cake making has fallen to zero. But he is having such an amazing experience. A new school (he is at the international school), lessons by ipad (what happened to pen and paper?), new friends, noodles, rabbits, a cat, hamsters and his cousins. In many ways it is like sending him to boarding school but not like in my day where I did not see my parents for a whole 3 and 1/2 months at a time, didn’t speak to them as there was no facetime and certainly no email. He is with a loving family and will be home for the holidays. But the family works differently when he is not here as it does when the others leave for whatever reason, travel, university. It is the universal reality of parenthood - children grow up and the best you can do is prepare them so you do not need you. In this case I am preparing him a bit sooner and for a possibility more profound than most children have to contemplate. (below is a photo of Ned at Heathrow about to travel solo/assisted to Singapore and with 3 of his cousins on their first day of school)

As if 4 weeks in France was not spoiling enough (we did actually work while we were there!) but Rupert and I ended the summer with a few days in Florida for our 21st wedding anniversary (we did not celebrate 20 years last year). Florida would not normally be our choice of a romantic break for such an anniversary but really we were there to visit Rupert’s beautiful Aunt Sally Ann, his only living relative of that generation having lost his Mum and Dad in 2 years. Sally Ann (Sally Ann Howes) is better known as Truly Scrumptious from Chitty Chitty Bang Bang. This beautiful British actress is now 86 and remains a force of nature. She is one of Britain’s treasures but like all of us,  life will not go on for ever. I have been very close to her since we first met when I was 23. She adores her two nephews and has played a key role in both their lives. When I was diagnosed last year one of the consequences, I thought at the time, was that I would never see her again. So with my relative health we were determined to go and visit her and her husband Douglas. 

When I first met Rupert at 23, we fell in love and were engaged in a very short space of time, so while I felt I knew his very core there were many parts of his life I was still to learn about. He had told me he was from a family of actors and musicians and that he and his brother had broken the tradition. At some point he had said his Aunt was in Chitty Chitty Bang Bang. I imagined some backing dancer in one of the sweet factory scenes and thought no more about it. Meanwhile my family were all very curious as to who this man was, he was 8 years older than me. We barely knew each other and were not connected in anyway before we met. In the December before we met (1993 - we met one month later in January 1994) I had spent Xmas with my family. After one rather drunken family meal we had settled to watch the annual showing of Chitty, a favourite in our house. A conversation had ensued. Who was the actress? It wasn’t Julie Andrews. So as the credits appeared (in those days you could not pause) we all crawled forward to be closer to the box to read the names better, but they sped past us and we missed it. A few months later Rupert and I were walking through Camden when we passed a cafe called Truly Scrumptious. As we passed he said ‘Look, they’ve named it after Aunty’. I stopped dead in my tracks. ‘You mean your Aunt is Truly Scrumptious’. Yes, he said, he had told me she was in Chitty. Heart racing, I found the nearest red phone box (again no mobiles in those days) and called my mother. ‘Mum, Mum! Guess who Rupert’s Aunt is?”. And after that all the little whispers wondering who this man was ended as it was now clear. He was Truly Scrumptious’ nephew. What more did anyone need to know? 

Since that time she has added some glamour to all our lives. She has sung to 4 Presidents. She met Marilyn Monroe at President Kennedy’s famous birthday were Marilyn sang ‘Happy Birthday Mr President’ at which they arranged to meet for coffee until Marilyn’s untimely death. The event itself had been choreographed by Sally Ann’s then husband Richard Adler. But that is the thing about death, it comes to us all and Sally Ann is nearing her time. She has had the most remarkable life but cannot escape the discomforts of old age, the sadness of losing all your friends and the losing of your independence. We had a beautiful few days. 

21 years on this September

21 years on this September

While we were there we spentsome of the time in a nice hotel near their apartment. We had decided that for such a big anniversary, and given my situation we needed to take the ‘sea view’ principle - do it while you can. We had in fact seen the prices and decided that partial sea view was good enough. Brexit added to the pain as had we paid when we first booked it would have been a good third cheaper. But as it was hurricane season and the hotel was under half full so they had up graded us to a full sea view. We slept with the window open and could hear the whoosh whoosh of the sea. One of the nights we had a disagreement in the middle of the night. Rupert thought the wind was a bit strong and the noise was keeping him awake. I was quite happy, enjoying the bluster, but he shut the window. In the morning we had texts from family - were we OK? Had the hurricane hit us? As it was we were in fact on the other side of Florida from the hurricane but we had clearly, unknowingly, experienced the tail of it. 

At breakfast the first morning I was suitably excited when I saw there was a ‘Raw Food bar’. On closer inspection it consisted of a few pieces of watercress and a plate of some raw spinach. There was also some interesting looking grass (see photo). Perhaps this was tall wheatgrass, I thought and looked around for some sissors or other implement to cut it with. But there were none, which made me think. Is it there to eat or for decoration? Why would you have grass on a raw food bar that was not for eating? So I surrepticiously ripped a few strands off and stuffed them in my mouth. Grass - it was definitely grass. Maybe this was a raw food thang in the United States. I thought I had better ask someone and as cooly as I could, making out I was simply interested and had not intended to actually eat any of it, I asked one of the servers, who confirmed it was just there for decoration. I was not the only person to have asked apparently - which makes me wonder why they hadn’t rethought their decoration strategy. And I slunk away with some spinach and watercress on my plate. 

One thing America has which we do not is Whole Foods. I know there are more stores here now but not in Brighton. Whole Foods for me (known there by many as Whole Pay as you can spend all your money in your excitement) is a cathedral to organic food and non toxic, ethically sourced food, supplements and other products. We have Infinity Foods which is pretty lucky but Infinity has a long way to go if it is to match Whole Foods quality and choice. There was a store near where we were staying and I made Rupert return there almost daily to get my organic juice and vegetables and more. The choice was outstanding as was the quality of the fresh food. 

We are home now. All is different with no Ned and Tom and Ella no longer at school. William was the only one up and in uniform on the first day at school. Every year I have taken the traditional first day of the school year photo. This year it consisted of William. I feel rather in limbo as I have no definite proof the cancer is on the move but in the past the liver marker that is rising has always been the first sign of this happening, so I am getting myself ready just in case. Ovaries out first. 

I have added 2 new treatments into my mix since getting back. One is chinese medicine and the other is GcMaf. I had had acupuncture before but not regularly and this time I am going to a fully trained Chinese doctor and starting a course of acupuncture and cupping (to release toxins, strengthen immunity and stimulate blood among other things). I have found someone I consider very good and after my first session with him I had a temperature during the night, which I interpreted as a good sign, my immune system had been given a jolt. The GcMaf is more controversial. I have been researching it for a very long time and heard all sorts of views. I am convinced there is something in it and have finally tracked down a supplier I think is most credible, with published papers on line. It is a Japanese family of clinics Saisei Clinics, which offers a whole range of non toxic approaches and immunotherapies (http://www.saisei-mirai.or.jp/immunotherapy/index_eng.html). They had been recommended to me before but Japan is not practical. Although I may change my mind if I believe they have something to offer I cannot find elsewhere. GcMaf or GC Protein derived Macrophage Activating Factor is ‘a highly effective macrophage activating therapy, used to stimulate the immune system and activate macrophages so that they can destroy cancer cells and other abnormal cells in the body’. I am not going to sell it, as I have not really started it yet as my consignment is stuck in customs in Coventry, but I have read enough that makes me think it is worth adding to the mix. I will report more as I go.

According to the Japanese Clinic it can be used as part of an integrative approach. Other suppliers insist it will not work if you are on chemotherapy and that you need to be on a ketogenic diet. I do agree that it has a greater chance of working if you are not on chemotherapy and that a ketogenic diet is ideal but chemotherapy has a role, it can reduce the cancer load which can then give the GcMaf a more manageable task. On the ketogenic diet, I am more convinced about the role of sugar and carbohydrates but I find it impossible to eat ketogenic (almost no sugar, good fats, some protein and vegetables mainly). So I am going for low carbs at the moments, good fats, vegetable and protein but I have some fruits. I have eaten more meat over the summer, but not much and with vegetables not carbs (except for Friday market rosti chicken and fresh bread from the local french market which was a weekly treat). 

I continue to write my stories for my family. My appreciation for writers has soared as I realise that despite a desire to write and things to say it is very difficult to find the time to get on with it. Here is something I have written about where I will go one day. Where we will all go one day for that matter. 

Where will Mum go when she dies?

Well, that is a very good question and one Mummy thinks about a lot. Some people believe in heaven, a beautiful and peaceful place. Others believe we are reincarnated, that means we come back as another creature or person. Mummy thinks it must be somewhere in the middle. When you die she thinks it must feel like just falling into a deep, deep sleep but never waking up. Instead we find a kind of peace coming back to life as our cells are reabsorbed by nature. When she dies she will be the wood pigeon. Every time you hear it softly coo it will be Mummy talking to you, telling you she loves you and is watching over you. She will be telling you there is nothing to worry about and that she wants you to love life and be happy. She will also be the breeze*. The breeze that gently blows the trees making the branches bend and the leaves rustle. The breeze that brushes your face as you walk and ruffles your hair when you run. The breeze that wraps itself around you so that you know Mummy is there. 

Everywhere you look you will see other Mummies keeping watch over their children. The bees buzzing, a dog barking, water running, cows lowing. They are the rain that trickles down window panes and drips off eye lashes, the clouds, always watchful, playing games in the sky, sometimes making shapes for you to guess what they are, other times covering the earth like a thick cotton wool blanket. Some Mummies are the snow falling silently, tickling your cheeks and freezing your toes. Others the waves on the sea shore, always present, always watching, talking to their children, sometimes, playing with them as they race and jump and whoop, catch me if you can, she will be shouting, ‘I’m coming to get you’ as she whooshes up the shore snapping at their ankles. You can find most Mummies in the light of a candle, flickering and dancing, watchingcarefully as you stare into the flame. Some Mummies are the blanket that covers you at night, protecting you, keeping you warm, keeping you safe. They are the heather on the moors, the daffodils in the spring, the leaves falling off the trees. They are everywhere. But your Mummy will be the wood pigeon and the breeze and she will follow you all through your life. When you hear her or feel her listen very carefully. She loves you.  

*because every little breeze whispers Louise

I lost one of my new cancer friends over the summer. That day I saw a baby turtle struggling on the beach until a wave came and washed it into the sea to and to freedom and I imagined it was Graham, free now to explore the world with no pain. 

 

Making the most of now

This year has seen the death from cancer of so many household names. I will certainly be in good company if I join them. Alan Rickman, such a great baddie. Bowie, the sound of my youth and two of our brilliant female comedians Caroline Aherne and Victoria Wood. But death from cancer is not selective. When I was first diagnosed as Stage IV I began to read discussions from chat rooms full of men and women with advanced cancer. I still read them. There is a degree of comfort feeling I am not alone, listening to other voices sharing their fears and hopes. I do not join the discussions, but I do read them. Often the posts begin ‘goodbye to another angel’. Losing people to cancer is an occupational hazard. I do not know many people personally with advanced cancer, but the number has been growing as we have a habit of seeking each other out. And this adds a painfully real, less virtual, less abstract aspect to the process. There is one thing listening to ‘singlemum39’ describe her shock at a poor scan result, there is another if you have started to build a relationship with an actual flesh and blood person. Bad news is communally owned. 

I had a fantastic few weeks after my last scan, following my wobble, which gave me a window of freedom and I stuffed it with as much as I could fit in. I spent a week in the Peak District. I took Ella and Tom to Madrid and had such a special time. Spain has been part of my life and now it is part of the children’s also. I have felt so fit and well I had expected the scan I had last week to show even further reduction. But it did not. So as I write I am not as confident as wanted to be. The scan showed no growth, and the cancer load is still relatively low compared with when I was first diagnosed, but there was some suggestion of what is called ‘enhancement’. This is where the contrast dye of the CT scan is taken up by the blood tumor in a more concentrated way which can indicate greater activity. The optimistic view is that I am stable and this was simply a variation in CT scans taken at different times or the pessimistic view is that my remission could be coming to an end. I am (or was) naturally a half glass full person but it is so difficult to ignore the pessimistic reading, simply because I need to be prepared to act fast if indeed this is the case. 

I continue my supplement regime and have added to it. I now take Poly MVA. This is an extortionately expensive mixture but I have read enough about it that at the very least I believe it is a powerful nutritional supplement and at most there are clearly many who believe it was critical to supporting remission. It is a mix of minerals, vitamins and amino acids including a metal, palladium, which partly explains the cost. Read more about this on https://www.cancertutor.com/polymva/ 

I am also investigating Gc Maf/Goleic. I am still undecided. I had this up my sleeve if current treatments started to fail. It does not work with chemotherapy and I remain on Xeloda as one of my treatments so now is probably not the right time. I may also be stable and so want would need more evidence that things were going in the wrong direction before I make a decision. The next treatment on the cards, if I stick with my oncologists advice would be an IV chemotherapy which to me feels like torture. Advanced cancer is a marathon not a sprint so I hear, and those who believe you can heal and keep the cancer in check advise not to expect any quick results with many of the alternative therapies. If it were not in my liver I would feel ready for the marathon, but the fact it got so bad in February makes me nervous as I cannot afford to wait too long in the hopes something will work. 

The main tragedy for me over this period was Brexit. I am still in mourning. I simply cannot believe that enough people were bonkers enough (sorry those of you who voted out but this was a mad decision) to vote leave. And what have we seen since. The disappearance of the leaders of the Brexit movement. No viable plan and the prospect of having to sign up to EU regulations and pay the same contribution in order to get the trade deals we will need. But without the voice inside to influence. A bit like Norway. Lawyers and advisers on trade deals are going to make a fortune. I am embarrassed when I talk to my non British friends who all cannot believe what a home goal this has been. My Spanish friends say that in Spain you would need way more than 50% of the vote for a decision that momentous. I am embarrassed for my Polish friends, who have lived and worked here for years and worry for their future. If 16 year old Scots could vote in a referendum for independence why could 16 year olds across the UK vote in this referendum. Tom, who has studied politics for the last 2 years, was a month or so too young to vote yet by the time we work out what is going to replace this he will be well into his 20s while many of the older generation who overwhelming voted out may not be here by then to live the reality. And then – on the other side of the pond. Trump. How? 

As I continue to work my way through my old books and diaries I found a book I studied for Spanish A’level which had a profound impact on my life. It is ‘San Manuel, Bueno, Martir’ – Saint Manuel, the good the martyr, written by an author Miguel Unamuno who was obsessed by death, and what happens after death. The protagonist, San Manuel is in part a reflection of Unamuno who uses this character to explore his own feelings about death. It is set in pre civil war Spain, in a village at a time when poverty was all consuming. Manuel is a hero to the people of his parish. But it is a story of sacrifice. Manuel cannot believe that life exists after death but cannot bear the pain that this reality would bring to his people whose lives are already so difficult. Belief in a glorious life in heaven after death helps people put with up with their everyday misery. How can he share his certain knowledge that there is no life after death and make their lives even more miserable? Better to sacrifice himself and continue to preach in the salvation that awaits his flock even though doing so pains him deeply. As I confront death I have been exploring my own beliefs. I simply cannot believe either that there is anything after we die. Certainly we get recycled through the soil and plants and remain therefore alive in some sense but not an afterlife, a heaven that I can believe in and look forward to.  I would like to believe, a strategy to manage the potential reality of dying. In Gottingen there is a beautiful Catholic Church, it is all white inside, probably what my heaven would look like and I go there every time I visit the city and I pray and pray. Being raised as a Catholic, church has always been a space for me to reflect and gather my thoughts. I find myself visiting Churches more frequently now. Whether I am praying or meditating they offer me a place to calm my mind. And there is always the hope that there will be some revelation which changes me, is this a desire for hypnotism, some trick of the brain that switches me into deeply believing in a better place so that I can manage my current journey.

In Madrid with Ella and Tom we visited lots of churches and museums. Had I not been ill perhaps we would never have arranged a trip like this. But I am filling my time with these special moments with family and friends and getting such deep joy from it. I could have lived a longer life but without the depths of happiness that I feel often these days as I take pleasure in everyday. The weather was absolutely beautiful, cloudless and hot. We spent hours in the Prado and the Retiro Park. Picasso’s Guernica is now displayed in the Museum of Queen Sofia. The museum has three major exhibitions covering different parts of Spain’s more recent history (before, during and post the civil war). As always happens in museums to start with you head to the parts you are most interested to see and then you branch out to other areas, and as the time goes by and your feet start aching you begin speeding, up racing through rooms of great artistic works, until you totally run out of steam. I am not an artist and have never studied art and have a terrible habit of completely deriding certain pieces of modern art. There was one particular part of the Queen Sofia museum which displayed works which frankly, to me, felt very much like the emperors new clothes. I started through the exhibition partly wondering what was going on, and if really someone was taking the micky. Were all the other visitors to the exhibition deriving deep and meaningful pleasure from these non works (they included for example a series of squared paper, the sort you might do maths homework on, framed, each with 3 letters of the alphabet in the middle – really?).  As we progressed through the exhibition Tom and I connected in our confusion and couldn’t help sniggering at some of what we saw, I am sure educated art historians would consider us philistines. Ella made a good attempt at defending the work, Tom and I were not convinced. The piece de resitance was a room, which was essentially empty. We looked around it bemused trying to work out if perhaps it was a corridor, but no, it was art. It’s title ‘Non specific space’. That was enough. Tom and I almost roared with laughter. In the following room there was a film of a woman crawling around the floor of the ‘Non Specific Space’ and some narrative about the artistic value of the space and how it allowed the observer to engage in the art directly. So when no one was looking we tried to recreate this engagement with the space – and I did a bit of surreptitious crawling so Tom could a photo of me before we got caught and possibly thrown out for our disrespectful behaviour. 

We also spent some very special time with one of my very best friends Maria who I so rarely see. I have posted a photo of us from our time at Harvard, where we met and 21 years later. 

In the Peak District I went on writing course and met some wonderful people in a beautiful setting. A lovely friend of mine Kirsty invited me. I have always wanted to write and imagined I would do this when I retired, I am partly living my retirement now – hopelessly knitting, gardening a little and now writing. The course and people inspired me. I have been trying to work out how best to capture the many memories of the kid’s childhood and now I have a plan. I am writing a series of very short stories made up of real events with a little imagination added. This will be a legacy for my kids and give me the opportunity to write. I still have far too much to do, I have barely touched my diaries, I have photos galore that still need organising, but during this recent phase of health I have been so busy doing other things I have not had time to fit them in. But I need to get a move on.  Here is one one my short stories

Death of a Hamster

Petal and Scar were hamsters, Dwarf hamsters to be precise. Dwarf hamsters, Louise was assured by the owner of the pet shop, could live together and not eat each other and given that both Ella and Tom were determined to have one each, it was either two dwarf hamsters and one cage or two Syrian hamsters and two cages. “Syrian hamsters do not usually tolerate the company of another hamster once they reach 6-10 weeks of age when fighting starts to occur - the golden rule is one hamster, one cage” Louise had read. Not dissimilar to human children after the equivalent number of years she mused. A hamster charter had been negotiated before Louise and Rupert had given in and agreed to letting them each have one. Cleaning the hamster cage regularly, checking they had water and food and playing with them was the children’s responsibility. They had signed in blood. Well almost. 

Petal and Scar did live happily together without violence towards each other, but they were definitely not the cuddly creatures the kids or Louise had imagined. Despite numerous attempts to pick them up they nipped at every opportunity. They ran far too fast to enjoy a gentle stroke and tried to escape frequently. The hamster charter obligations were rapidly broken as the disappointed children lost interest in their new pets. The weekly cage clean was added to Louise’s mountain of housework. When she could pin a child down to help she did, but the chase and wails of injustice was too much for her often and she alone took over responsibility for the animals, kicking herself for giving in to their pleas in the first place and believing they would fulfil their responsibilities.

One day Ella noticed that she had not seen Petal for a couple of days. She tentatively put her hand into the cage to remove the lid of the little plastic house the hamsters slept in, and there lay Petal, curled in a ball, clearly not very well at all. Suddenly interest in the hamsters soared to new heights. Hysteria set in and all four children, begged Louise to take her to the vet. Louise was certain that Petal was very close to death and privately hoped that she would expire quietly and without fuss or expense, on her own, over night. She convinced the children that she would discuss what to do next tomorrow and convinced them they should wait until then before deciding what to do. But the next day Petal was not better and still very much alive. Again the children cried for her to let them take her to the vet and again Louise procrastinated, knowing that such a trip would make the vet richer, her poorer and Petal would die all the same vet or no vet. The question was, how long would she hold out. Again she convinced the children to wait, this time until after school, as she had to go to work and there was no time to do anything until then. 

At five o’clock she called home from her office. Kasia, who helped her look after the children when she was a work answered the phone. No, Petal was no better and yes Petal was still alive. Ella grabbed the phone weeping, ‘Please Mummy can we take her to the vet so they can make her go to sleep?’ Louise said she needed to think and put the phone down. It was late, would there even be a vet open that evening? She consulted with her work colleagues. Why go to the vet? They said. There were plenty of ways to finish off a hamster. And they began to recount the possibilities. Drown it (but the you would have to blow dry it to get rid of the evidence of the act). Lie it behind the car wheel and reverse onto it. Throw it in a communal bin. Leave it in the path of a neighbourhood cat. What to do? What to do? Louise was conflicted when Virginia, the receptionist, protested. How could they possibly suggest such cruel and heartless things? In no time she had found a local vet, called them up and booked a 6 O’Clock slot. Louise had no choice. It was now 5.30 and she had to drive home, pick the kids up to get there in time. She called Kasia and asked her to transfer Petal into a transportable box, and get the children ready. They had already had their tea and the younger two were in their pyjamas so when Louise arrived home the four of them were lined up in a row outside the house, waiting for her. Ella holding a small box reverently. 

At the vets they piled in and registered with the receptionist. “Name” “ Louise Howes” Louise responded. “Not yours?” she said in a schoolmarmly sort of way, looking down at her through the glasses balanced on the tip of her nose “the pet”. “Oh, it’s Petal, Petal Howes”. Ella protested from beside Louise. “She’s not called Petal anymore Mum, we changed her name, don’t you remember, she’s Rose”. This only confirmed the receptionists obvious suspicion that this was yet another neglected creature that had been purchased by parents too weak to stand up to their children’s. They all sat down and waited.

When their time came, the vet called for Petal Howes and looked slightly taken aback to see this gaggle of young children follow their mother in. She was a young vet who, Louise concluded, communicated better with animals than she did with people. Petal was taken out of her box and placed in the middle of the examination table which stood in the middle of the room. The children arranged themselves around the outside and stared at her little body, struggling for breath. “If only she had waited for one more night thought Louise, this hamster was never going to make it through the night again.” But it was too late. 

The vet confirmed that Petal was very poorly indeed and it would be kinder to put her out of her misery. The language started to become a bit abstract for the younger children. Ella was certainly clear that Petal needed to be put to sleep, but for the other 3, a vet meant making Petal better.  They looked confused ‘put her out of her misery’? And the vet realised that perhaps she ought to speak in a manner that such young children might understand. Louise was relieved, it would be the vet and not Louise who would have to explain. “We will give her a little injection and she will just go to sleep and not wake up” the vet explained. The children began to understand and the tears began. The vet then looked up at Louise “Would you like to come and collect her tomorrow so you can take her home and bury her or we could cremate her here”.  “Cremation I think is the simplest” Anne mouthed, trying to indicate to the vet that this was a delicate discussion to be having with that particular audience. “What’s cremation Mummy?” asked Tom.  There was a dramatic silence as Louise stared hard at the vet, she raised the subject, she had to deal with it. Stuttering slightly, the vet replied “Well, um, you see, cremation is, well, when animals die, and people sometimes” Oh dear, she was digging herself deeper. Now the conversation had expanded to involve the cremation of people. “We burn them”. “Burn them! Why do you burn them?” The gentle tears rose to squeals of horror and hiccoughing sobs. It was time to go! Louise indicated she would be back to collect the body, thanked the vet, turned leaving Petal alone on the table, and ushered the children out, wailing and howling, through the full waiting room, up to the reception desk where she flustered as she tried to find her cheque book to pay the £25 fee for this disastrous trip.

I am in France now with my family, and were last week joined by my parents, sisters and their children. Every day seems to pass so quickly, if only I could slow down time. 

In September Rupert and I plan to go on a late 20th wedding anniversary holiday (last year was our 20th anniversary but we never celebrated it properly). I am hoping against hope that I stay healthy so that we can still go. Life with advanced cancer is very uncertain, planning becomes so difficult – but I will continue with my regime and sun and happiness of being together on holiday is bound to have an impact on my cells. They will find it very difficult to behave badly with all this love and enjoyment about.

A reprieve

My last entry was a difficult one. I had a significant wobble which I now like to think was a necessary and useful step along the way as it made me focus. After the worst of it, when my liver was swollen (“as you can see this is a much sicker looking liver than we had before” oncologist looking at scan results) I changed my treatment to the oral chemotherapy (Xeloda) and I continue my visits to Germany. After 9 weeks of this and on Xeloda (I do two weeks on one week off) I had a subsequent scan. So much hung on that scan. I am more aware that time may not be on my side and with summer here I have packed it full of places I want to go, people I want to see and things I want to do as a family. It is amazing how short a summer is. But all of this relies on me being well and so uncertainty overshadowed it all. It is funny how your horizons can so rapidly change. The end of the summer was my target. If the outcome of the scan had not been good I would be in a very different place today. 

I had only a short wait between the scan and the results. Waiting for the results you are in a state of limbo. Either they would be good (in which case my plans for the short term could all go ahead), or they would be bad (in which case, depending on how bad, I would have to action one of the possible treatment plans I have investigated and I would lose my window I so hoped for over the summer). The waiting room is the worst. You stare at people as they come in an out of the oncologists office, carrying papers and reports. Might one of those reports contain your results? Has he seen them yet? What can I read from the face of the breast care nurse? As it was, she sneaked me a thumbs up. Which I suppose tells me in the future that if there is no thumbs up the results will not be so favourable. She did so only seconds before I went in. My oncologist immediately handed me the brief report of my scan which started with ‘excellent response in the liver’. This is the first excellent, or even vaguely good report I have had from a scan. To date I have had 5 scans since my diagnosis last January and they have gone from baseline, no change, no change, (despite chemotherapy), some progression and then a ‘much sicker looking liver’. So to get an ‘excellent response’ was pretty impressive and much better an outcome than any of the scenarios I hd prepared for. I looked at the scan (which I hate doing) and really it did not look too bad (at least not compared with the previous one). So while momentarily celebrating this result I jumped immediately in my mind to - how long might this last? But for now just getting a green light for the first part of my summer (I have another scan at the end of July) felt like luxury. 

I spoke last time about facing my fears. The main one is the prospect of leaving my children. Ned is the youngest and possibly the least aware of what is going on. Actually that would be unfair, it is difficult to altogether forget I have cancer but we work very hard to make sure life feels as normal as possible and is not dominated by my situation. I think the older ones are aware that I may die and I always answer any question they have truthfully, Ned does not ask questions and if I were to go sooner rather than later he would have more time as a child without his mother. I hate the idea that he might consider what life would be like without me there but at the same time I want to know that he has at least considered it as a possibility, so that he can explore what that might feel like and in some sense be more prepared than were I to be run over a bus with no warning. I was not sure how I would raise it with him, or when would be the best time. As it is I am looking pretty well and to all intents and purposes, if you didn’t know, it would be difficult to tell there was anything wrong. I had thought I would raise this as and when I became more obviously unwell. But the opportunity arose and I took it, encouraged by some videos I watched on a site called Wiston’s Wishes, which is a site targeted at supporting bereaved children. These videos followed families where one parent has a terminal illness. There were various professionals involved in each case including a child psychologist, and the message from this was very clearly that it is really important to engage your children fully and in good time. As I still have aspirations of cheating death, I need to balance how soon we address this directly with the kids, but certainly ensuring, at this stage, that they are aware it is a possibility, is important. 

So the opportunity came one day a few weeks ago when I was driving Ned somewhere. We were alone in the car together. He told me that he had watched a video at school about the key to success and that what mattered most was not how intelligent someone was but how much grit they have. Now Ned has lots of grit. He is a very determined and resourceful, but sensitive boy and he clearly liked the idea that grit was the key. This opened the opportunity to explore life and how grit can hold you in good stead. He had done a piece of homework for geography which had involved writing a diary from the perspective of a child in Syria who makes their way to Europe. He had to explore the various factors that influenced the child’s decision to, and ability, to flee and make his way on the treacherous route to the UK or Germany (Germany more like!). He had really enjoyed this piece and took such a long time working on it. So I used Syria as my example. I moved the conversation to how much grit those refugee children from Syria would have to have right now and how did he think he would cope if he was Syrian had lost both his parents. I decided to go big time, both parents, not just one. He immediately focused on how he would escape and what he would do - rather than the fact that he had lost both his parents. I tell you if there was a zombie apocolypse you would want Ned on your team.  I moved the conversation to life and how there will always be challenges and difficult times and the important thing is how you deal with them. Did he think he had any really big challenges in his life? He started looking around the car awkwardly and said yes he did. ‘What, my cancer?’ He nodded. So I went for the jugular. ‘Do you think you would be OK if I died?’. He looked a bit embarrassed - so I asked him if he had ever thought about it and he said he had. I was pleased he had. ‘So would you be OK if I died do you think’.  ‘Well, hmmm’ he looks around and then stares ahead a bit ‘Umm, I might cry for about an hour’ ‘Only an hour!!!?’ ‘ Well, maybe two’. And we turned the conversation into a joke as I berated him for the pathetically short time he thought he would cry for me. But the conversation was a real landmark forme. I felt relieved to have had it, and to know that he is not so naive as to not have considered this as a possibility. I know there will be lots more work to do, but I hope I have plenty of time for that. 

When my liver was bad I simply couldn’t imagine how I would fit in all the things I wanted to do before I die with my worklife. I love my work and so any decision to stop working, or cut down drastically really would be a significant move. At this point it would be symbolic of me starting a kind of countdown. But as I have just experienced, things can get pretty rocky and you can pull back from the edge unpredictably. I reckon the chances of pulling back from the edge reduce as I work my way through treatment options, but I hope if I have another wobble I will also have a chance of a redress. As it was, I was in the middle of my wobble and so arranged to talk to my boss, who I have worked with for many years and has been incredibly supportive, enabling me to work very flexibly and around my unpredictable treatment appointments and ups and downs. I talked about what the options were and we agreed that I should consider how much I felt I could work and they would support me in this. After my scan however, I feel in a completely different space, and for the past few weeks have honestly barely thought about my situation and have simply enjoyed every moment and continued working as before. I am probably consciously stopping my mind roving into that cancer space more than necessary as it is so all consuming. I just want to be me again, even for a short while and part of me is my work. Since my scan I have been to Copenhagen for 6 days to participate in the bi annual Women Deliver conference which was hosted there. In my field this is an amazing opportunity for those devoted to supporting women’s position in the world, health, educational, rights etc to come together and share learning, strategise together and it is a great opportunity to feel reinvigorated about the issues. 

Normally attending a conference like this would be par of the course in my work and I travelled regularly to places like Dar es Salaam (Tanzania) Kano in Northern Nigeria, Freetown (Sierra Leone) and Addis Abba (Ethiopia), Seattle in the States, Geneva and on. But I have not travelled for work since my diagnosis. We have reorganised how I work, but I have missed engaging with the many people I have worked with over the years I have worked in this field, and usually met in person on one or other of my work trips. As this is arguably the largest conference of its kind in this field with over 5 1/2 thousand delegates, many many people I have worked with over the years were also there. So in addition to the content of the conference it was so refreshing to be out and about, as I used to be, and meet up with people formally and informally. Most people I work with closely have heard about my situation either from me or indirectly through the grapevine, but there are a few who did not know. A couple of those I told in person when there. While we have worked together on and off over many years, I am unlikely to ever work with them again in any substantial way. And I wanted to say goodbye. I am taking my preparations very seriously. It was a privilege to be able to tell them how much I had enjoyed working with them and to hug them goodbye. I may well hang around for a long time but I may well not and if we all had the chance to say our goodbyes in person, weprobably would.  So I took advantage of being there with them. Perhaps it is kinder not to tell people, but I wanted to. 

In terms of Copenhagen, I had never been to Denmark before. The weather was pretty miserable and the conference centre was situated in the middle of a construction wasteland. I did make it into the centre once by taxi (until I realised that a short 9 minute journey had cost me about £32), and it was very pretty. But the wasteland we were in, together with the cold dank weather made me consider the motivations of those Viking invaders of the UK. Although they were probably disappointed by our weather when they got there. We had chosen the nearest, best value (cheap) hotel to the conference centre. It was a 10 minute walk between the two. The hotel was called the Cabin Metro and was built to look like a ship. And as you might expect (except that I hadn’t) the rooms were designed like cabins on aship - or rather a cross channel ferry. We travel to France each summer and take the Newhaven - Dieppe ferry. It takes 4 hours and we often book a cabin on the way back after the long drive to Dieppe. The hotel room was a minature version of a four man cabin. There were bunk beds, with a ladder hung on the wall to get to the top bunk, and the beds themselves were outrageously thin. I am not very big so they were fine for me but we had colleagues from Nigeria and Malawi who were definitely larger than I am and they had to stop themselves falling out of bed.

 

The conference itself was opened by the great and the good. The conference featured amazing women who have all made significant contributions to women’s progress in one way or another for example Gro Harlem Brundtland (first female Prime Minister of Norway); Graca Marchel (Mozambican politician and humanitarian and widow of Nelson Mandela) and Annie Lennox (UNAIDS ambassador and general rock star for AIDS). What an inspiration and motivation for all those if us who have worked in this field for years, a task which can at times feel thankless or hopeless or both. 

My feet were playing up from the Xeloda and so the walk between the conference centre and the hotel was hard, I bought 3 different types of shoes so I could change them frequently and vary the pressure points. I also tried taxis, even for this short distance, until I clocked the exchange rate and realised I would run out of money if I continued. I tried the metro once, on my way back from my trip to the centre. The ticket machine did not accept my card, rather looked like it did, twice, but never gave me a ticket. I rang my bank, who could see the transaction leave my account, but there was no one at the station to ask. So I travelled the Metro ticketless. It is fascinating because there are no ticket machines at entries and exits, in fact I did not have my non ticket checked once. People are expected to buy a ticket and there are random checks. Apparently Sweden is consistently the happiest country in the world in a survey that calculates happiness. It has one of the most gender balanced Parliaments in the world, I think beaten only by Rwanda. It also turns out to be my country in my office sweepstake for the Euro 2016. It may be very happy but I am not sure their football prowess is going to reward me.

The days were long for me and I missed home and my ability to follow my various supportive approaches. I did not have a juice for 5 whole days. The longest I have gone juiceless since March last year. There was not a juice bar to be seen. At the airport on the way home, however, there was the most amazing organic juice bar. I was like a child in a sweetshop. The queue through security was pretty long and I reached for a magazine I had picked up from home. It was a Sunday Times magazine and there was an article on the front I had wanted to read, so I had shoved it down the front of my bag. I had been carrying it around and would most likely have thrown it away once I got home, but given the queue, it was the easiest thing to get my hands on to fill the time while I queued. And as if by some twisted fate, in addition to the article I had wanted to read, there was one which featured a pretty twenty something “I was on my gap year when I my mother received a terminal cancer diagnosis”.

It was an article by a woman who, just like Ella, had found out that her mother was ill while on her gap year. In this case they waited until she got home to tell her. I am not sure Ella would have forgiven me had we done that. Her mother had lived for another 10 years and she was writing about her after her death. It was excruciatingly painful to read, but I could not put it down. It described the days and weeks after her death. Clearing out her things, looking at old memory boxes and working through her wardrobe. The section that had me biting my lip to hold the tears back described her telephone. She had been part of a family group chat and they kept her on it after her death, no one wanting to suggest they remove her until one day she wakes up and there is a message ‘Mum has left the chat’. Her contract must have come to an end. The loss she felt after this so modern a reminder of her mothers absence was palpable. I tried to think of the many virtual spaces I inhabit, and wondered what would become of them. Do they become shrines, historical repositories, fragments of life and memories? Can you save them or do the facebooks of this world suddenly decide that the period of inactivity has been too long and you have not accepted their new terms and conditions and therefore they are going to just close your account down without warning. I have a twitter account, which I was going to use to advocate for the things I care about in my area of work, but then I got cancer and could not work out how or if to use it anymore. These are just the obvious two, there are more through work, then family groups too. A very modern dilemma. 

I am in France at the moment, spending a week with Rupert. We did this last year and planned to do it again this year. The weather is atrocious but it is lovely to be together. We were joined at the weekend by my two best friends from my school years and their husbands - who are great great friends of us both. We have not spent such concentrated time together (without children) for a very very long time, possibly never. I have not laughed so much in ages, I almost choked on an olive I was laughing so much at one point (probably at a joke I made). They are both godmothers to Ella. We talked of the future among remembering the past. Rupert was sent a book by a friend called the Council of Dads. It was written by a man who learned he had a terminal cancer and he established what he called a Council of Dads made up of his very best friends so that they could keep him alive for his kids when he was gone. We decided we like this idea and that weekend was the beginnings of the Council of Mums that I will set up among my closest friends. We will set up a Council of Dad’s too, made up of Rupert’s closest friends, including my best friends husbands who have become some of Rupert’s closest friends, but their job will be to keep an eye on Rupert. It feels good to be building the structures that will remain if and when I am not here, to keep my loved ones supported. 

I continue with my supporting strategies for healing, I am getting better at exercising, I continue juicing, infra red saunas when I can, mediation daily (lots still to learn) and a range of supplements.  We have summer planned with the kids. Tom turns 18 soon and Ella 20 even sooner. Tom is in the middle of his A level exams and that will be the end of his school life. A me before cancer would perhaps have mourned the passing of childhood, but right now I feel every major landmark I am around for is a major achievement. Perhaps cancer will protect me from the impact of the children growing up and leaving home. I want nothing more than to see them confident and able to be independent having had a stable and loving childhood. I am close, but not close enough.  My focus on staying alive continues.

Charting the way ahead

What the last weeks have shown me is that fear is simply unbearable and I must find ways to get it under control. It achieves nothing. It spoils the now and it makes it almost impossible to think straight. The only way to deal with the fear is to face it down. By that I mean - work out what is it that I am actually afraid of and tackle it one by one. Even articulating to myself what those fears are is terrifying. But as I work through what they are it feels more like grabbing a nettle to avoid the sting. 

Accepting that death is inevitable sounds rather obvious given my situation but this has been what the last few weeks have been about emotionally. Of course death is inevitable for all of us and who knows when that day will come - but I think I had imagined I had years and now realise that, while I will fight tooth and nail for years that may not be possible. My breast care nurse recently discussed my referral to hospice care. A precaution and simply good to know where they are and start building a relationship with them. My Aunt was in a lovely Hospice and her death was so dignified. But it is not really what I want to be doing at this stage in my life. I know it is sensible but I have grand ambitions and I think my struggle has been that if I contemplate the end in any detail perhaps that will jinx my attempts to outwit death. Somehow my body and mind will know my heart is not in it 100%. 

Most of my fears relate to what will be left behind and in order to take control of these fears I need to understand what troubles me the most. The children and Rupert of course. My family and my friends too but my children and husband are what hit me the hardest when I think about my fears. They range from the very practical - how will the household timetable and logistics run? I, for most of their lives, have been the organiser in the background. I may over estimate how essential I am in this role, and the children are older now and the older ones pretty much take care of most of their movements but it is all those bits in the background that make it happen. Signing the permission slip for x trip, paying the Duke of Edinburgh fee via parent pay, fixing the date for the birthday party and related logistics, knowing where things are, thinking ahead to make sure uniform is washed before the week starts again, helping make sure homework is done and not at the last minute, mediating sibling confrontations, mediating father son confrontations when they happen (I think Rupert would call that interfering :)), mediating confrontations over who is going to walk the dogs, organise what we will do in school holidays and half terms. And the list goes on. When I look at it I can see that if I took me out of the equation the world would not stop and that Rupert is perfectly able to (and frequently does) much of the above. It is just that we share it and there are always invisible tasks that one partner does that the other is barely aware of, or is very happy not to be engaged in (emptying bins, sorting out car insurance for me). The boys have already started to take on more responsibilities. This is partly through need as I am not quite the whirlwind I was and partly as we prepare them for life. Most recently we have been teaching Will how to use the washing machine independently (and that includes basic instructions about not mixing colours and whites). And so on. 

I plan to write a list of things I need to have prepared. And this includes writing a logisitics list where I download the various domestic details that I am almost certain only I know. What does the E7 error code on the washing machine mean and how do you resolve it? Where did I pack the winter hats and gloves? I also need to list all my various user names and passwords for the numerous services I use and devices I have. Net flicks, itunes, gmail, easy jet … Transferring bills that are only in my name to Rupert’s so we don’t get stuck in that rut whereby you are told they can only deal with me unless I have given them permission for Rupert to talk to them. All of this could be done by power of attorney but easier at this point to just move them earlier than later. 

After the logisitcs there are the messages and memories I leave. Who gets the chance to polish their legacy! Rather than dying old and doddery, when my kids roll their eyes frequently and say ‘just ignore her’, I intend to leave lessons for life which will take on great meaning and hopefully actually be helpful in guiding them in someway, or at least giving them comfort. I have also thought of leaving some podcasts (for want of a better way to describe them). But I first need to work out how to do this and be in the right frame of mind. I would like to write something to the so many people, family and friends, who I love and maybe leave them something that will remind them of happy times. And if that list isn’t enough I still have ambitions to type up my old diaries and even get on to writing something more substantial for the kids and Rupert. In between all of this I need to cram in lots of lovely moments doing either what I love or what I have always meant to do.

I know this may seem dramatic but I feel as if the last few weeks have been a period of transition. I am reaching some level of acceptance and realise what an amazing opportunity I have to manage my departure and in doing so hopefully make it less terrible for everyone. The grieving process for many, including myself and Rupert, began when I was diagnosed last January. I threw myself into investigating ways to cheat death. I have had a bump which has reminded me that cancer is a clever bastard and I may well not be able to do that, but I am determined as hell to carry on trying.

The sun coming out feels symbolic. It is so much easier to feel the beauty of life when the birds are tweeting, the wood pidgeon cooing, the wind blowing warm and gentle and the blossom bursting. Knowing that all of that will still exist when we are all gone. 

I have a lovely summer planned which I am determined to be able to enjoy. Part of my fear is that I may not even enjoy this if I have to change treatment again. I am not enjoying the xeloda (the chemo pill) - it makes me tired and burns the palms of my hands and feet. I am on my third two week stint now with a scan later this month to see how things are going. My bloods have been going in the right direction but I still feel my liver hard and uncomfortable so am not convinced that it is exactly dissolving the tumors - even if it manages to keep it stable for a while. So I am on the road again to investigate what other options are out there. 

I am writing this from the Hallweg Clinic near Stuttgart. It is a private oncology clinic which appears to be using a range of new approaches. I am only here for one day, for a face to face consultation. I just want to know what they would suggest if I were their patient. It may be that there is nothing else, or that I cannot access it, or that I do and it does not work, but I am determined to work out what the cutting edge centres in the world would offer. The treatments for cancer are opening up. I can’t sit and have ancient therapy when there are new, less toxic, approaches being developed. I still may miss the boat, but truly believe they are getting closer and closer to cancer being a chronic disease which they have to actively manage to stay ahead of the game. I may never get rid of it, but imagine if I could find a treatment that bought me some more time, giving time for another option to become available and so on - until (she wishes big) perhaps some of these may actually be available for patients in the UK. 

I caught a plane from Gatwick this morning, easy jet to Stuttgart. It was so straight forward and we landed 20 minutes early. I had only hand luggage and was almost first through immigration. The sun here is shining too and this area of Germany is beautiful. The Hallweg sent a car to pick me up (eye wateringly expensive but for a day trip and my first trip it is the easiest choice) and a smiley old guy was waiting for me. The first song that came on the radio was ‘Don’t worry, be happy’. I looked out the window at the sky and the occasional cloud and decided this was a sign. The words to the song are great …

 

"Don't Worry, Be Happy"

Here's a little song I wrote

You might want to sing it note for note

Don't worry, be happy

In every life we have some trouble

When you worry you make it double

Don't worry, be happy

…….when you worry your face will frown

And that will bring everybody down

So don't worry, be happy

Don't worry, be happy now

I am not sure I have ever been driven so fast in my life. At one point we were driving at 180 KM/H. I once thought - wouldn’t it be easier to just die in a catastrophic car crash now. Then I thought no! I am not ready - I have just spent the past few days working through what I want to get ready so that I feel more at peace with the whole situation. Another sign. I have a choice as to how I deal with this. My maternal instinct kicks in and making whatever time I have left calm and loving and happy is really important to me as are getting all the above in order. In the same breath I will equally, maternal instinct also, fight as hard as I possibly can to keep one step ahead of the cancer. To do this I need a level of acceptance, which for the moment, I think I am reaching. So planning a dignified peaceful exit while at the same time running as fast as I can to keep ahead of the game to avoid this exit completely. 

I have been continuing my meditation training using the Headspace app. Ten minutes a day, so not very impressive, but everyday so I hope I am absorbing some headspace behaviours and will automatically use them throughout the day and especially to help when the fear comes knocking. I have also finally put up the infra red sauna that I bought. It has been in boxes for about 3 weeks. Actually it is not entirely true that I put it up. I asked a friend (a new friend I have made through cancer is pants who has his own sauna at home) if he might be able to help me. It turns out he has a far infra red sauna and mine is a near infra red sauna so mine is totally different to his. It looks like a tent. It has a simple pine frame and a big canvas that goes over it and three big bulbs in a heating unit which hangs inside the tent. Not at all what I expected. So glad to have it up now as it is another approach I can use in my stay strong plan. (I have added some information about infrared saunas and their benefits below). The only place we could fit it was in Ella’s room so when she gets back from University she will find her room is now dominated by this canvas tent contraption. 

Note - Not a picture of me! And mine did not come with comfy pine floor and chair

Note - Not a picture of me! And mine did not come with comfy pine floor and chair

On the cannabis oil front, I tried to increase my dose but it just makes me so sleepy and while I am sure sleeping is very healing, when you have children and things to do it is pretty debilitating wanting to sleep all the time. So I have reduced the amount I started taking (which wasn’t that much in the first place) and am looking into a CBD only variety to take in the day and the CBD/THC mix at night. The night dose certainly makes me sleep heavily and I can feel a bit whoozy in the morning. I am not anywhere near the Rick Simpson dose and so am not technically doing the protocol properly. I am not sure whether to or not given that it will mean I will be almost unable to function for a good few weeks. I am also not too sure how powerful it is. If you search and search for success stories on the net you realise you keep coming back to the same group of people with their stories regurgitated on lots of different forum. I would love to hear from people who have used this protocol successfully because at the moment I am not sure if I should throw myself into it properly. 

Work has been a major issue. I continue to work but recognise that I simply cannot fit in what I need and want to do in the coming weeks and months and that the reality of treatment and my disease is that it is so unpredictable. If my time is limited then I have so much I need to fit in and working the amount of time I do at the moment makes it very difficult. The trains to London are so frustrating and on a bad day it can take 5 hours door to door and back - that is a lot of hours in a day and makes you exhausted. Changing my work status and pattern is really hard to contemplate as it simply adds to the wholesale life transformation this disease is instigating. Perhaps this is what I need though and through making more space in my week I can achieve those goals I have as well as being able to have the time to implement some of the lifestyle changes I need to support me - including more time for exercise. I am midst negotiations to see what balance will work. I have worked with my organisation for almost 12 years and love the people - I actually can’t imagine them or the work not being part of my day to day life. They have been incredibly supportive and I have an interim plan to continue but to not travel to London as often and to keep an eye on things so if I need to change things I can do so at any point. Of course were I to miraculously find a treatment that worked for a good period I may have a long period of stability or remission but I will never know how long such a period will be (or if and when I might get one) so I need to be flexible. 

It is Brighton Festival time. Every year I do not take advantage of living surrounded by so many cultural, musical and artistic performances and events as I find I am too busy and assume I will do it some other year. Not this time. I am planning a whole day to go around some of the open houses. My usual open house experience is randomly walking past a building and seeing an open house sign and deciding on the spot to have a quick look - rather than planning a deliberate route so that I can take advantage of many of these annual displays. 

I wrote this couple of weeks ago now - and have since changed my treatment plans having spoken to an amazing woman who helps people ‘navigate the cancer maze’. This is after someone who reads my blog from Australia contacted me after reading about my wobble - and I am incredibly grateful to her for doing so. It shows what a global world we are in - information is power and in my game you need to be queen of information and any help from all corners of the globe is so very welcome. More on this in my next post. 

http://uk-saunas.co.uk/ 

http://uk-saunas.co.uk/ 

A Wobble

IMG_9776.JPG

The last few weeks have been a bit all over the place. I went to Germany in March as scheduled. In the couple of weeks before the trip I had noticed discomfort in my abdomen. Something was growing and affecting my diaphragm which meant taking a deep breath became hard. Much of the hardness and swelling was just below my sternum and to the left of my abdomen. As liver pain is usually described as being on your right side with pain under your rib I was confused and thought maybe it was my stomach. I had just started the Budwig protocol so that would explain my stomach being a bit out of sorts as it got used to it. My skin continued to be dry and prickly. By the time I got to Germany the swelling and hardness was really obvious. Of course it was my liver - why I considered it could be anything else I simply don’t know. Delusion? It was the first time I had seen Dr Martin not look very positive - and that made me very scared. He gave me an ultrasound which simply confirmed it was my liver. The left lobe in particular which explained the swelling on my left. I had my bloods taken and went back to the hotel with my cousin Tim who was accompanying me and lay in the bed in paroxisms of fear. The physical discomfort meant that it was almost impossible to think of anything else and the shock that it had grown so fast was significant. I cried a lot and could barely move from the bed covers for hours. After everything I had been doing it was so unfair.

The next day we went back to the clinic to get the blood results, which while one of the liver markers had risen significantly the other liver markers were still around the normal mark and my other bloods were looking ok. This news offered a little relief, but not much. I have therefore changed my treatment and this now includes a chemotherapy drug called xelodawhich is taken in pill form. This is where chemotherapy has an advantage over other approaches, it can work faster to reduce tumor bulk if it is life threatening. Still attacking from multiple sides is my approach but this multi method approach now includes a chemotherapy pill. 

My oncologist here is now prescribing this and for that treatment I am back within the conventional therapies. I am not happy about this but really do not feel I had any choice. I have now been on xeldoa for 2 weeks(I do 2 weeks on one week off) and am on my week off now. It has all sorts of side effects - for me themain ones have been fatigue, feeling constantly tired and what is called palmar plantar - hand and foot syndrome where small amounts of the medicine leak into the hands and feet making them super dry and sensitive. My old school friends clubbed together to buy me some ugg boots last year when I started chemo and I am now wearing this almost exclusively to protect my feet. This very unfortunate side effect has many implications. Running may not be possible. Gardening - which I had plans to do more of (I am a hopeless gardener but intended to become better) will be very difficult and may not be possible if I do not keep my hands in a reasonable state. Even my knitting (also a slow affair) is more tricky. This is a chemo that some women do well on for quite a while. I had a chemo sensitivity test last year and it identified this chemo as one I should respond to. But I feel so unsure of anything at the moment. I had thrown myself into all the good advice and different approaches and here I am starting chemo. The good news (in a bad good news sort of way) is that the scan I had 3 weeks ago did not show any spread anywhere else. I would like to think that my diet and supplements have helped to make it difficult for the cancer to settle anywhere else. 

I still feel my liver, hard and swollen but I can breath normally and it is not quite as large as it was 3 weeks ago so I am hoping that this is because I am responding to the various treatments. I realise that I should be more circumspect about exactly what I am doing so if anyone would like to know more detail please do contact me personally. I am not sure at this point I am a poster girl for alternative treatments except that who knows what would have happened if I had not invested as I have in these. 

So often I have read emotional outbursts from people with advanced cancer. Why me? Focusing on what cancer has taken away and I was determined that that would not be me. But I would not be human if I was left unscathed and managed to Pollyanna my way through this journey the whole time. I have an emotional outburst simmering. Hope can take you so far and this setback has extinguished some of that hope. It has kicked me into getting my affairs in order - as they say. Not so much the administrative stuff but the letters to friends and family I would like to write in the event I do not beat this. I woke up during the night in Germany, before getting the blood results, in a panic as I had not written any of these. The speed at which the liver swelled up really shook me. Could it really happen so quickly? 

I hope I can get back to a safe position and then have an extended period of stability - but I have only recently started new treatments so I need to wait a bit before I know if this is going to happen. I frequently read conversations on the website Inspire for Advanced Breast Cancer and it seems thatmoments of crisis are part and parcel of the process. There is a limit to how many crisis you can have I presume but I am hoping this is simply a crisis moment which I need to come back from the edge, pull myself together and carry on. Stay calm and carry on. 

So now I am considering what my next move should be if and when we get back into a safer holding pattern. I am interested in the clinics in Mexico and am trying to work out if it is worth me planning to visit one of these and if so which one. I am looking into Rigvir (a licensed virololgy registered in Latvia but which has had some good results and almost no side effects). I am considering the full Rick Simpson protocol. I am still on budwig but it is so confusing. Can I take it now I am on a chemotherapy? Purists I am sure would say it goes against the protocol but I have read testimonials of people who have taken it with a chemotherapy and claim it has helped them with side effects. I also cannot stick 100% to the diet that is meant to go with budwig - the most difficult bit is not using oils - including olive oil or eating food cooked with oil. I frequently eat out when I am not at home and it is impossible to adhere to this. Then there is the melatonin I take at night. This is an antioxidant and you are meant to stop all antioxidants when you are on it. But many others swear by the beneficial impact of melatonin. So I am all in a bit of a muddle and not quite sure what mix of approaches I pursue in light of my current situation. But I know I need to have a plan ready for when (note the word when) my liver settles down and I am out of crisis mode. 

I have found it hard to write this blog. I so wanted to be the one who was an example of overcoming the odds. My character has always been optimistic, happy, excited about life and I feel so dragged down. It is as if I have lost me, what made me me. Louise without excitement for life is a shadow of me. And the prospect of being on the ladder of conventional treatments is abhorrent. At least xeloda is a pill chemo so I am not tied to the hospital - but if I need another chemo in the future I think only intravenous versions are what are left - and that makes me want to crumple.

I liked that I was facing this disease down. Admitting that I am struggling is very hard. I am hating that I feel tired on the chemo as this impactswhat I can do to distract myself. I have been working on a salvage mission to pull myself back onto the front foot. I went on such a lovely family holiday with my parents, sisters and brother and the 15 children we have between us. Since then I have been to visit my brother and I am now going to spend a couple of days in Oxford with Rupert who is there for work. Bucket lists were always something I thought to avoid as it suggested acceptance that the end was nigh but I am revisiting this and have decided I had better get busy and fill my time with fun and distracting things to do. Spend more time with friends. Go to museums. I am determined to do some gardening, sore hands or not. I also want Rupert and I to book a few weekends away. 

I also need to fit in writing my goodbye letters. I would like to never need these but I think what the recent dip has shown me is that cancer is a clever bastard and I am not really that special. It will get me in the end. Probably. And it is that probably that I still hang some hope on. Might the new treatments from scientific discoveries come fast enough to just keep me goingand I be one of a new generation of people for which it is a chronic long term condition or perhaps I will have success with the Rick Simpson protocol, Rigvir or time at a Mexican clinic. I had been so hopeful about budwig. This does take months to show benefit but given I have started chemo and am finding it hard to stick to it 100% I am not sure I will get that benefit and really need to talk to someone who knows more about it. Many of the alternative cancer approaches are so viciously anti chemo and seem to say, if you have had chemo then these approaches might not work. I have though seen stories of heavily treated people having success with cannabis oil for example and it is these that I now focus on.

Ned, who is a deep thinker and likes to talk joined me in bed the other day for a talk. He was calculating how old I would be when he is my age. Moments of torture. 

I continue to go through my old diaries and papers. I loved inspirational quotes which I collected as a teenager and young adult - I am going to share some of these - the first is particularly pertinent. 

The sun is coming out and this will I know breath new life and new hope into me. If only the temperature would rise as I simply cannot manage the cold anymore. I am still wearing thermal vests! Next time I blog I hope the feisty unaccepting Louise will be back. This is a minor blip. As Ella would say ‘did you think this would be easy?’. 

Quotes

The Clock of Life

The clock of life is wound but once.

And no man has the power

To tell just when the hands will stop, at late or early hour.

Now is the only time that you own.

Live, love, toil with a will.

Place no faith in tomorrow.

For the clock may then be still. 

Robert H Smith

 

How selfhood begins with the walking away

And love is proved in the letting go

Cecil Day Lewis

Tread softly for you tread on my dreams

Yates

 

I would not have been given the power to dream

Had I not been given the time to make those dreams come true

 

For we which now behold these present days

Have eyes to wonder but lack the tongues to praise

Shakespeare

To meet hate with retaliatory hate would do nothing but intensify the existence of evil in the universe. Hate begets hate, violence begets violence, toughness begets a greater toughness. We must meet the forces of hate with the power of love; we must meet physical force with soul force. Our aim must never be to defeat or humiliate the white man but to win his friendship and understanding.

Martin Luther King 

 

…whose mother is history,

rival of time, storehouse of great deeds,

witness of the past, example and lesson to the present,

warning to the future.

Don Quixote, Cervantes

 

Whilst the quest for greater equality has much vocal support, the resistance to that question appears intrinsic to the modern world for affluence is not readily given up, excessive profits are not meekly abandoned and power is not voluntarily relinquished. 

Broweet 1950

Envy isa worm that grows and consumes the entrails of the envious. Inca saying

 

The pleasures of Friendship

The pleasures of friendship are exquiste

How pleasant to go to a friend on a visit!

I go to my friend, we walk on the grass,

And the hours and minutes like minutes pass

Stevie Smith

April 25th

Since my wobble I have scrambled my way back to feeling more determined and positive. I remain conflicted however. The future I would like involves living and creating the circumstances that give my body and mind the best chance of doing this for a long long time. Preparing in case this does not happen, involves getting certain things in order. When I focus on this I wonder if I am somehow giving in to what most would consider the inevitable in my situation. But acting as if I have a never ending future is deeply unsettling. What if I were to dramatically decline and no longer had the strength or time to finish those things I would like to complete before I go? But does a focus on preparing for the end somehow hasten it. The power of the mind is incredible and there is much evidence of physical responses to the power of the mind. Patients who feistily confront a diagnosis and are determined to out do it live longer on average than those who passively accept a prognosis according to research. Is getting my affairs in order passively accepting in some way? Outwardly I am being feisty in my drive to outwit the cancer while contradicting this non acceptance of my prognosis by preparing things just in case. Surely my body will know I am not completely convinced I can outwit it and might this prevent the healing I need? All these things going round and round in my head then unsettle my brain which counteract the many actions I am taking to heal. 

After 4 weeks on my new mix of treatments including xeloda my liver bloods look as if they are coming down. I can still feel my liver but it is not as swollen as it was and I am feeling more normal again. The first 3 weeks of treatment were horrible and I felt exhausted and wobbly. But now I am coping better and apart from my hands and feet which have started to slowly disintegrate with the xeloda. My ugg boots turned out to aggravate not improve the situation as my feet moved around in the boots causing friction sores which I am now trying to resolve. This involved hobbling to the nearest shoe shop and buying some delicious fluorescent pink trainers. These at least keep my feet in the same place and I can now walk again with some discomfort.I do not feel tired like I did a couple of weeks ago and I wonder if part of my exhaustion was getting used to the new treatments and the emotional shock of having my liver deteriorate so suddenly. 

I recently met a fellow advanced cancer patient who contacted me via cancerispants and we shared strategies and ideas and he helped reinvigorate my efforts. I have ditched the budwig which I simply hated. It took ages to make. It tasted pretty disgusting and if I travelled anywhere I had to carry with me all the ingredients and equipment (hand blender, coffee grinder, kefir or cottage cheese). I did feel very positive about it but in practice it simply depressed me. Twice a day having to find the time to make and then eat this disgusting gloop. Then there were all the various dos and don’ts which I could not keep up with. The main one was no antioxidants which had meant I had stopped anumber of my supplements. Maybe one day I will revisit it but for the moment I am relieved to be off it. I have restarted a supporting plan involving high dose vit c, exercise and other ways of getting oxygen into my body. My diet remains the same but I have allowed myself a few things I had totally excluded. I was simply not enjoying my food and this was making me miserable - and being miserable is not the way to heal the body. So it is mainly plant based still, with at least a pint of juice a day, no sugar etc, but I have had some goats cheese and butter and the rare portion of chips (shock, horror). So delicious. I never realised how much I liked chips until I totally excluded them from my diet. I have restarted attempts to meditate. I downloaded an app called Headspace which I have started with and feel pretty good about. I may just crack it. 

Despite my long term goal of a long life cannot rid myself of a feeling of time ticking away. I am mobile and able to be relatively independent. I can travel. But the shock of the last month has exacerbated the sense of an hour glass - although I don’t know when it will run out. At least for the moment I can do things and therefore I must as I cannot afford to wait in case that time runs out. I have a great friend in Edinburgh who, for various reasons I have not seen for years. I keep up with her on facebook but have not managed to see her. If I do not soon will I ever. I have been identifying those things I really want to do. 

Mainly I want to type up my old diaries. I have started this. It is a slow process, but so fun. It is like meeting my younger self again. In 1991 I was studying Geography at Cambridge University. I went to Mexico to undertake research for my third year dissertation the subject of which was Family Planning and the Role of the Catholic Church. I have been a Catholic for Free Choice for all my grown life and my interest in reproductive health stemmed in good part from the contradiction, as I saw it, in the Catholic Churches teachings on birth control and contraception (remember that in 1991 there were no antiretrovirals and HIV was a death sentence as was an unplanned pregnancy for many). In Mexico at that time there were a number of church run family planning centres which taught ‘natural’ birth control which, to be honest, can be very effective indeed assuming you are in a loving and trusting relationship, you have a good diet, control over your body etc etc. Even then human error contributes to many unplanned pregnancies. I was fascinated to find out more about how the Church engaged with this issue in practice in a country which at that time had the largest city in the world and in it a population of which almost 50% were under 20. I will share a small excerpt from my then diary..I am talking about what experience I had to build on.

What I have in my favour is that I am female (!) and I was at a Catholic girls school from the age of 9. In the sixth form, (and not before) we had an hour session on all types of birth control methods and 2-3 sessions on Natural Birth Control. We were given ‘fertility thermometers’ and graphs and encouraged to get to know our own cycle. Each morning before getting out of bed we should take our temperature andmark it on the graph, from which we would eventually be able to identify when ovulation took placed. By Sixth Form I had certainly had more education than millions world wide and I still forgot to take my temperature. I would jump out of bed to get to a lesson, clean my teeth then remember I should have taken my temperature, so I would jump back into bed, lie there for 5 minutes in the hopes my temperature would return to what it had been when I woke up, then I’d mark it down. My Fertility Graph over the 28 days was quite unrecognisable.

My point was that this approach was simply impractical for millions of women and not a strategy for reproductive choice. 

I am early on in the diary but am so grateful that I wrote them. Memories that I simply would have lost. Reading them is like meeting an old friend again. I am sometimes embarrassed by what I write and found myself, while typing it up wanting to doctor what I had then written. My mature self embarrassed by my younger self. But I have set myself some clear boundaries - I must type it up as is, warts and all.

Budwig in the bath, old photos and 1985

It is three weeks now since I started the Budwig protocol. What has it been like? Well, as I have stage IV cancer I am having between 5 and 6 spoons of flaxoil, mixed with either cottage cheese (organic) or kefir. I take it in turns. The cottage cheese really is the best base but I find it really hard to eat so taking it in turns with kefir on alternate days makes it more bearable. I mix it with pear and nuts, or apple and nuts with crushed flaxseeds. I have noticed a couple of things. First, and most significant has been the impact it has had on my energy levels. Just days after starting it I began feeling far more myself than I have for a long time. The week after I started I went to work in London twice and drove Tom to visit Exeter University, spent the night and day there and drove back again and felt totally fine. This is amazing as not long before I simply would have got too tired. This may simply be that my body has been craving more fat and this diet introduces that, but it is consistent with other testimonials which frequently indicate a physical impact even soon after starting the diet. It does take at least 3 months for tumours to respond usually, sometimes longer (for people likeme who have had chemotherapy). I have a slightly obsessive habit of reading budwig testimonials. I read them in the bath and before I go to sleep. On the train. When I wake up. Anytime I begin to feel doubtful or fearful and they cheer me up. If it works for all these people surely it will work for me? Together with dendritic cell - how can the cancer survive. 

 

I have learnt a few things. Mainly not to balance a bowl of budwig mix on the side of the bath. Earlier this week I did this and it slipped in. The bath had only just run and was lovely and warm so I just stayed in it surrounded by cottage cheese with oil and the odd nut floating here and there. I have also learnt that it is quite difficult to eat all that mix and have space for anything else. So now I am slightly worried I will miss out on other vitamins and minerals as I am not eating much of anything else. I try at the very least to have one raw dish a day and some days all I have is my two bowls of budwig and a salad bowl (and of course my juices). You should not have antioxidant supplements on the diet as it cancels out the effect of the mix so I have stopped a good number of my supplements and am continuing only with chlorella, a mushroom supplement, curcurmin, milk thistle, metformin, aspirin, cimitedine and vitamin d. I have also started avemar again. I found this really helpful during chemotherapy. In the morning and evening, on an empty stomach I have essiac tea and sauerkraut and in the evening I take some CBD/THC oil (just a few drops not the full cannabis oil protocol) and melatonin. I am a bit confused about what to do with melatonin as I understand this is an antioxidant so I am wondering if I ought to give this up - but there is so much about it as a good therapy for breast cancer particularly. 

Metformin is an old drug which has been used for diabetics for years. In the integrative health world it is well recognised as being a good anti cancer drug. It is an inexpensive drug most commonly prescribed for type 2 diabetes. It seems to affect multiple key processes related to cell growth, proliferation and survival. It decreases the amount of glucose produced by the liver and reduces the bloodstream level and cellular uptake of insulin. It does more than this but for many this knowledge has been available for quite a while but our good old NHS couldn't possibly prescribe this cheap drug to someone with advanced cancer as it is not registered as an anti cancer drug, so I had to buy mine first by internet from an Indian pharmacy (which a cancer colleague of mine advised was the most reliable). More recently Dr Martin was very happy to prescribe it and did not even question why I would want to take it. I was walking in London this week and passed a newsagents. I ran my eyes across the front pages of the various news papers and the front page of the Express read ‘Diabetes pill beats cancer….and costs just 2p a day’

‘New research suggests it can slash the risk of developing liver cancer by an astonishing78%, breast cancer by a third, pancreatic cancer by 46% and bowel cancer by nearly a quarter. 

The discovery raises the possibility that the drug metformin could be a potent weapon in the battle to find a cure for cancer. Scientists think the drug could prove to be cancer’s Achilles heel.

It works by reducing the amount of glucose - which feeds cancer cells - being produced. It helps cells mop up sugar circulating in the bloodstream cutting off cancer’s energy supply’

The study was undertaken by researchers from the Department of Epidemiology and Health Statistics at Shandong University in China who analysed 37 studies involving more than 1.5 million people.  

It amazes me how long it takes to get promising treatments into use. The Chinese who published this study didn't actually DO research on actual people they studied existing studies. This means that the evidence already existed - yes it is helpful that they have now collated it - and come to the conclusion that many already had reached - that it is a useful drug in the cancer arsenal. I wonder how long it will take to dribble into everyday practice. I am not sure I really have the time to wait for that day so as with many of my other approaches I take my health care into my own hands for the moment. 

What has been so wonderful about feeling more normal is that I don't think about the cancer so much. I think I honestly believe that with budwig and immunotherapy I am going to be able to keep it under control, hopefully for a very long time. I would dearly love to be a walking talking example of taking stage iv cancer by the balls and manage it, living as normal a life a possible. I am not in pain. In fact I feel rather a fraud at the moment. I had a eye appointment recently and they went through a basic check list - was I on any medications etc etc. How was my overall health? I didn't think I could face telling the very nice optician that I had stage iv cancer - the pain on people faces - a sort of contorted mix of pain, shock and sympathy - is just too horrible - it is much easier to just say I am perfectly well. It most definitely shuts down conversations almost immediately and I just want to be normal. 

It feels more normal to go into work now and I am back in a more day to day work pattern and my work colleagues and friends, while being very loving, just get on with things and what might have been a rather dreary meeting in the past is suddenly refreshing for its normality. It is as if I have removed a mask and am experiencing the normal with a kind a excitement simply because I can experience it. When I was first diagnosed I was so certain that was the end of any normal life. I’d like to think I am a better mother because of it. When Ned starts some verbal diaorrhea about something that happened at school, rather than grunt as I try and carry on reading or concentrating on a task - only reallyhalf listening and making that noise that reminds me of my mother and how frustrated I would get when I tried to tell her something but knew she was distracted - I now stop what I am doing and drink in whatever it is he has to say. There is nothing like a possible deadline to focus the mind. 

My next trip to Germany is next week and this time I am going with my cousin Tim who I have been very close with all my life. We used to spend so much time together, we travelled in India together after we finished school, before university (I have added some photos of us at that time). My Aunt Jo who died of ovarian cancer in 2014 was his Mum. While the reason for going to Germany is not brilliant it is a treat to spend time with people I love. He has children and a job and we simply don't see each other as much as we might like - so I am happy he will be coming with me. I leave on Wednesday and will have my bloods taken on Thursday. Any test makes me a bit jittery, I have been feeling so good I cant believe the results will be bad, but it is always an unknown. I do trust in how I feel but the liver can be quite damaged before you get symptoms. I have had incredibly dry skin all over, which was one of my first symptoms when I was diagnosed last year - so that makes me a bit nervous. It could have a simple explanation - the cold? too many hot baths? lack of oestrogen? We will see.

I have been working through my diaries and photos slowly. Last week I pulled out one of many bags of photos from the days when developing photos was the only way to see them. How I miss those days. My more recent photos are very badly filed and I reallyhave no idea how to efficiently organise them. Why do we insist on taking 4 or 5 of the same exact scene. Because we can! So I have multiples of far too many photos. Rationalising is an effort - it requires either just blindly deleting 4 of the 5 or as I tend to do it, spending far too long looking at each of the almost exact same 5 photos trying to decide which one is best. This is a hopelessly slow way of organising photos. Last week I joyfully organised actual hard copy photos. These were all from the year before Rupert and I married. I won a scholarship to Harvard the year we met and so soon after getting engaged I moved to Boston and Rupert came to visit a few times. I arrived home in the summer of 1995 and we married in September 1995. I was pregnant with Ella about a month later. We also travelled to Spain a couple of times on long weekends away. Luckily we did all of that as once I was pregnant with Ella, the other 3 came in relatively quick succession and Rupert and I can count on two hands the times we have been away and alone together since. I filled 3 photo albums and got used to looking at pictures of the young me. I didn't really even think - goodness I look young - to me I just looked like me. I remember looking like that, I just felt as if I was looking at me. Then I went to the bathroom to go to the loo and caught myself in the mirror. What a shock I got! I must have simply become so absorbed in these photos that I adjusted my self image and then when I saw myself with my curly short brown hair, glasses and lined face I took a sudden step back in shock. How does time pass so fast? I don’t feel any older really. Physically yes, but not in my head. 

I then worked my way through my 1985 diary. I was 14. The diary is very small with a tiny space per day. At that time I lived in Barton Stacey on an army camp near Winchester. That year we moved to Rhinedalen in Germany (another military camp). The diary describes my rather violent swings from being deleriously happy about life and feeling lucky to misery and depression linked to friendships and self esteem. I was unhappy about the prospect of moving to Germany, but when I did I ended up enjoying my time there. The films released in 1985 (that I saw) included an Officer and a Gentleman, Greystoke, Desperately Seeking Susan and Weird Science. On one weekend I went to stay with a friend and we watched Breathless - and 18 - and I remark that it ‘was OK but only had 40 seconds of sex’!

1985 was the year I had the operation to remove the cyst in my left breast which I still believe had a role to play in my later cancer. 

‘Went into Heatherwood Hospital ward 1. Full of mostly geriatrics. The one next to me sounds like she might die in the night’ 

‘Had operation. 7 people visited me at once. Mum bought grapes and apples and crisps’

‘Feel really whoozey. I’m just walking around like a zombie saying the right things’

Having moved to Germany I complain about having to share with my younger sister ‘again!’. I note the day to day goings on interspersed with observations about the wildlife…’15 year old boy lives down the road. Will meet him. Bet he is the biggest JERK alive’

I note the date of my first period. For information it was April 16th 1985 aged 14. I was pretty late compared to my friends at school and remember when finally it came. These days perhaps I wouldhave announced it somehow via social media - (privately to my friends of course) but then we had to rely on the telephone stuck to the wall in the hall which cost loads to use if you were calling England. 

1985 was the year I did my Duke of Edinburgh - it ‘rained badly on night of practice expedition, slept little and then took wrong turn and ended up walking an extra 20 miles - got lost but eventually found our way’.  We failed the first expedition. I didn't write why in my diary but I do remember that the person assessing us was not impressed with the food we took with us (I chose a cucumber among other things and this I was told was not an ideal food for an expedition, heavy and with no calories). We were also criticised for hanging a camera on the outside of the tent. According to our assessor, had it rained the camera would have made the outer tent touch the inner tent and got it all wet. This was bad enough to fail us. I don't think he liked us very much, especially when we tried to defend our actions by claiming (quite sensibly) that had it actually been raining we would not have been so stupid as to hang our camera up outside to get wet. We failed and were the only group who had to repeat the expedition part the Award. When we finally did the expedition again I note in my diary ‘Did final DofE expedition having failed first one. This time - we got lost and cut out massive corner but did not confess - and as we ended up in the right place we passed.’ I also note that we ‘set fire to farts’ outside the tent.

I did two O levels early (I was the last full year of O’levels before GCSEs were introduced) Spanish and RE (we called it Doctrine). I noted that I ‘look like George Michael’ in my school photo.

This was also the year that I had railway tracks fitted. I wore them for about 9 months. I had this uncomfortable contraption I had to wear every night to help pull my teeth back into place. I can vividly remember the pain of wearing this nightly. On October 24th 1985 I had two teeth out. These are the teeth I had forgotten I had out and it was only when I went to the holistic dentist recently that they showed me on the X-ray and pointed out the infection in the jaw where the teeth had been. I wonder how long I had had that infection. It has now been cleaned out - but I wonder if it had been bubbling away on and off since they were originally extracted?

What else? A few other notable events. I passed my canoeing one star (on the Thames). I made blue lavender smelling soap for a chemistry exhibition for a parents day - only to find it had turned pink on the day of the exhibition. I was a general pessimist when it came to school work. Frequently I note in my diaryhow hopelessly I have done in various exams which in the end I do pretty well in. 

In 1985 Boris Becker was only 17 and ceded number 1 at Wimbledon. Apart from that and a comment about a volcano in Colombia that killed about 25,000 which I mention the focus of the rest of the diary is almost entirely self centred. It was, at 14, all about me.











New treatments, coffee (not for drinking), Essiac Tea and the Budwig Protocol

I have decided what being in my situation feels like. It is like being at a party, the best party you can imagine, a children’s party and there is a game of musical chairs. The music has stopped and everyone, but me, has managed to find a chair. All eyes are on me – it is my time to stop playing. But I don’t want to. I am having fun. I am happy. I don’t want to stop playing and I definitely don’t want to leave the party. The silence of the halted music rings in my ears and the anticipated looks of the other invitees all looking and waiting to see if I will leave (as one should do when you fail to sit down fast enough). Will I make a scene? Was it bad luck that I missed the chair? Can I claim some injustice and request we play the music again and redo that round? 

I have to admit to finding the last 3 months (since the scan) really quite hard. I have felt rather lost, occasionally feeling normal but often being overwhelmed with fear or uncertainty. Then worrying that such feelings send bad signals to my cells which will in themselves not help the healing process. Then researching how long people  like me live for, and while there are many stories of people healing, following some of the various natural or non harmful protocols I am also exploring, there are those who go down the conventional route, some of whom live for quite a few years. But their lives involve chemo after chemo, hair loss, nausea, numbness of the hands and feet and ulcers among the other horrid side effects. And the thought of having to do any of that again overwhelms me, as I wonder, will I give in at some point and just decide a few years is better than nothing. Can I achieve a few years, can I achieve full healing – with what I am doing? Or at least for long enough for some less toxic treatment that has remarkable responses to become widely available? 

The recent news stories of yet another success with immunotherapy glints at where we might be going with cancer treatment. Some form of long term approach which has a vaccine like effect – to genetically modify t-cells to manage the cancer themselves. Oh, you can imagine what these stories are for people like me! I want to shout ‘let me try it!’. But the stories always come with the probably sensible caution that there is still a lot to learn and more research is required. But goodness it seems to me that we have a mad system. Why, as advanced cancer patients, do we not get more say about what treatments we have? There may be unknown risks but there are many known risks with the existing treatments. Why can I not take the chance and with it the risks? It would be my decision. Why am I not eligible for immunotherapy treatments in the UK now? There must be thousands of women like me. Are we going to be the last generation subjected to the poison of chemotherapies with our doctors knowing there is no chance they will actually save us. Yet here we have evidence that approaches are being discovered which have had some remarkable responses. Even in this example they seem to have trialed the new approach on people who had only months to live. Do we really have to play such chicken with death before we are eligible forsome of these new approaches? Ravage our bodies and minds with existing treatments, simply because the research has been done and the risks (however horrible) are well documented – making it OK to offer as a treatment. Iwonder how many advanced/terminal cancer patients around the world, like me, simply closed their eyes on reading the promising findings from the recent trials and crossed their fingers and toes so tightly – whispering to themselves – please let me still be alive in time for this to be a treatment I might benefit from. I do know there were some cases of horrible side effects in this trial, but given that current treatments have a very low chance of any significant extension of life, surely the exceptionally high response rate vs the severe risks for a relatively small number is a risk many like me would like to take. 

I have been having regular blood tests after my scan and my liver bloods have been going in the wrong direction. Not too severely at this point but enough to indicate the cancer is active again. My other bloods are pretty good but it is unsettling knowing the liver bloods are a bit dodgy. I have just returned from Germany and had dendritic cell therapy again with a view to reversing this deterioration. Instead of waiting another 3 months I will need to go back in another month and then possibly another until we have the bloods back where we want them. Dendritic cell therapy has similarities with the new research in as much as it is an immunotherapy which relies on harvesting the white cells from the cancer patient. In the case of dendritic cell they develop a vaccine – the dendritic cells are the generals of the immune system and they train the t-cells. But the newly trained T-cells, after each injection, eventually die and are replaced by untrained t-cells which need to be trained themselves if the body cannot manage the cancer itself after the initial training sessions from the immune system generals. 

One of the downsides of having to return so soon and possibly more frequently than I had hoped, is that there is a pretty big price tag per visit and I am eating fast into the generously donated support to cancer is pants. 

If my cancer has become active I need to take more action and have decided to start one of the major natural cancer protocols that exist. For those of you who have not heard of the budgwig protocol, it will sound a bit whacky, but if you do just a little research there is a wealth of supporting evidence and testimonials, very impressive and numerous, of people for whom the budwig diet appears to have reversed the disease process. The protocol was designed by a German biochemist and physicist (Dr Budwig). She was a seven time Noble Prize nominee. She was considered one of the world’s leading authorities on fats and oils. Her research demonstrated the effects that commercially processed fats and oils have in destroying cell membranes and lowering the voltage in the cells of our bodies which then result in chronic and terminal disease. The cells of our body fire electrically. They have a nucleus in the centre of the cell which is positively charged, and the cell membrane, which is the outer lining of the cell, is negatively charged. 

Taken from Cancer Tutor.. Read Morehttp://www.cancertutor.com/budwig/

 

Dr Budwig discovered that when unsaturated fats have been chemically treated, their unsaturated qualities are destroyed and the field of electrons removed. This Commercial Processing of fats destroys the field of electrons that the cell membranes (60-75 trillion cells) in our bodies must have to fire properly (i.e. function properly).

The fats ability to associate with protein and thereby to achieve water solubility in the fluids of the living body—all this is destroyed. As Dr Budwig put it, “the battery is dead because the electrons in these fats and oils recharge it.” When the electrons are destroyed the fats are no longer active and cannot flow into the capillaries and through the fine capillary networks. This is when circulation problems arise.

Without the proper metabolism of fats in our bodies every vital function and every organ is affected. This includes the generation of new life and new cells. Our bodies produce over 500 million new cells daily. Dr Budwig points out that in growing new cells, there is a dipolarity between the electrically positive nucleus and the electrically negative cell membrane with it’s high unsaturated fatty acids. During cell division the cell and new daughter cell must contain enough electron rich fatty acids in the cells surface area to divide off completely from the old cell. When this process is interrupted the body begins to die. In essence, these commercially processed fats and oils are shutting down the electrical field of the cells allowing chronic and terminal diseases to take hold of our bodies.

A very good example would be tumors. Dr Budwig noted that “The formation of tumors usually happens as follows. In those body areas which normally host many growth processes, such as in the skin and membranes, the glandular organs, for example, the liver and pancreas or the glands in the stomach and intestinal tract—it is here that the growth processes are brought to a stand still. Because the dipolarity is missing, due to the lack of electron rich highly unsaturated fat, the course of growth is disturbed—the surface-active fats are not present; the substance becomes inactive before the maturing and shedding process of the cells ever takes place, which results in the formation of tumors.”

She established that this can be reversed by providing the simple foods, cottage cheese and flax seed oil, which revises the stagnated growth processes. This naturally causes the tumor or tumors present to dissolve and the whole range of symptoms which indicate a “dead battery are cured.” Dr Budwig did not believe in the use of growth-inhibiting treatments such as chemotherapy or radiation. She was quoted as saying “I flat declare that the usual hospital treatments today, in a case of tumorous growth, most certainly leads to worsening of the disease or a speedier death, and in healthy people, quickly causes cancer.”

Dr Budwig discovered that when she combined Flaxseed oil, with its powerful healing nature of essential electron-rich unsaturated fats, and cottage cheese, which is rich in sulfur protein, the chemical reaction produced makes the oil water soluble and easily absorbed into the cell membrane.

In practice this means starting a diet which includes the daily consumption of a mix of low fat organic cottage cheese and flaxoil plus ground flaxseeds. There is more to it but essentially this is the heart of the protocol. As I am an extreme case, with cancer in a major organ, the amount of the mixture recommended daily is very high. I have spent ages scouring the internet and despite a few dismissive posts there is far more supporting this diet for people with advanced cancers. There are many testimonials, too many to have been made up, from people for whom this diet reversed their condition or at the very least vastly improved the well being of the affected person. It is low cost, and no one is going to become rich if cancer patients adopt this as a supporting protocol. The worst that can happen from my perspective is that it does nothing and I have to endure the not particularly nice taste of this mixture.

I spent quite a few hours while in Germany this time reviewing testimonials from cancer patients and integrative health practitioners who have used this as part of their support to patients. With indications that the cancer is getting busy again I have to be proactive and so in addition to my existing efforts (juicing, supplements, diet and of course dendritic cell) I have started (as of today) the budwig protocol. This is a long term strategy and really needs to be followed over the long term (I would like there to be a long term so I am not complaining). I just need to work out the logistics to make sure I always have the ingredients I need to hand. At home in Brighton this is quite straightforward but if I go anywhere, even London for the day, I have to work out how to accommodate this diet and have the ingredients to hand as often as necessary. I cannot say I find the mixture very delicious but it there is even a small chance that it makes the difference it is worth it (I sound very martyr like – the reality involves a good deal of moaning and groaning as I try and eat it down, a bit like with some of my less appetising juices).

Renne Caisse 

Renne Caisse 

Essiac Tea. This is another protocol that I have started. The story behind it involves a nurse in Canada called Caisse (essiac is Caisse backwards). It really is worth reading more about this. Rene Caisse, a nurse in Toronto discovered, from an elderly patient she was looking after, a formula of herbs which this patient claimed to have used, advised by an American Indian, many years previously and which had cured her of her breast cancer. Rene Caisse spent many years investigating this further and ultimately using it to treat patients, many of whom were sent to her by doctors who had run out of conventional options - her reputation was so great. The story is one of persecution and resistance by the mainstream medical authorities paralleled with many from this field persuaded of the contribution of this therapy in cases where all other efforts had floundered. The therapy is basically a tea with four main ingredients; sheep sorrel, burdock root, slippery elm bark and turkey rhubarb. I boil it up as per the instructions and take the stated amount twice a day on an empty stomach in the morning and last thing at night. This site has good information about the tea and some extracts from Rene Caisse herself.  http://www.healthfreedom.info/Herbs%20for%20Essiac.htm

Rebounding – (basically jumping up and down on a small trampoline) is often used by people working to heal themselves naturally, as it stimulates the lymph system. I was given a miniature trampoline for Christmas and try and keep up with this. Here are some of the benefits of rebounding taken from http://wellnessmama.com/13915/rebounding-benefits/

Benefits of Rebounding

  • Boosts lymphatic drainage and immune function
  • Great for skeletal system and increasing bone mass
  • Helps improve digestion
  • More than twice as effective as running without the extra stress on the ankles and knees
  • Increases endurance on a cellular level by stimulating mitochondrial production (these are responsible for cell energy)
  • Helps improve balance by stimulating the vestibule in the middle ear
  • Helps improve the effects of other exercise- one study found that those who rebounded for 30 seconds between weight lifting sets saw 25% more improvement after 12 weeks than those who did not.
  • Rebounding helps circulate oxygen throughout the body to increase energy.
  • Rebounding in a whole body exercise that improves muscle tone throughout the body.
  • Some sources claim that the unique motion of rebounding can also help support the thyroid and adrenals.
  • Rebounding is fun!

I have also recently begun ‘tapping’. Again, sounds a bit whacky but there are too many people convinced of its benefits for me to disregard it as it costs nothing and there is a logic behind it. It involves tapping meridians around your body. People often refer to tapping as an ‘emotional freedom technique’ or EFT. Perhaps EFT sounds more scientific than tapping but I have discarded any cynicism and incorporated it into my daily routine. Here is a link to some information about tapping…… http://www.alternative-cancer-care.com/eft-and-cancer.html

There is something I have been doing, and feel obligated to admit to as I would not be sharing the full range of therapies I am using if I did not. My reticence in writing about this is so very British. It involves bottoms and coffee. But when you are in my situation you open your eyes to all possibilities and evaluate each one on their merit. Coffee enemas appear in every, and I mean every, natural or integrative approach to healing. I could not ignore them for too long (although I did to start with). There are many benefits. Here is a list taken from http://www.naturalnews.com/038429_health_benefits_coffee_enema_detox.html

1) Coffee enemas reduce levels of systemic toxicity by up to 700 percent. According to the late Dr. Max Gerson, a pioneer of coffee enema therapy and its effectiveness as part of his famous Gerson Diet, caffeine and other beneficial compounds in coffee stimulate the production of glutathione S-transferase (GST) in the liver. GST is said to be the "master detoxifier" in the body, as this powerful enzyme binds with toxins throughout the body and flushes them out during the enema process.

According to a 1982 study conducted by the National Research Council (NRC), the effect of green coffee bean consumption on the production of GST in test mice was an astounding 600 percent increase in the liver, and a 700 percent increase in the small intestine. In humans, the effect is similar, if not amplified, during a coffee enema, as coffee is able to directly stimulate the liver without having to first run through the digestive tract. The result is a powerful detoxifying effect that is unmatched by sheer diet alone.

2) Coffee enemas cleanse and heal the colon and digestive tract, improve peristalsis. Besides detoxifying, 
coffee enemas also cleanse and flush the digestive tract and colon without substantially disrupting the beneficial flora that populate a healthy gut. By regularly taking coffee enemas, you will not only help keep your digestive tract clean and free of debris and toxic buildup, but you will also promote healthy peristalsis, which is the series of organized muscle contractions that move food through the digestive tract and the tubular organs that connect to the kidneys and bladder.

3) Coffee enemas boost energy levels, improve mental clarity and mood. ….the body is effectively ridding itself of poisons that sludge up the blood; decrease oxygen transfer; and clog up the intestines, all of which generally leave a person feeling fatigued and ill. A
coffee enema is a particularly effective detoxifier; however, as the direct absorption of caffeine and palmitates into the bloodstream stimulates the release of bile and the efficient removal of wastes from the body in one fell swoop. The end result is a detoxifying release so powerful that many people describe it as a "high" marked by significantly improved energy levels, enhanced mental clarity, and better moods.

4) Coffee enemas eliminate parasites, candida. Because of the immense toxic load that results from regular exposure to chemicals in food, water, air, and the environment, the body is often unable to fully and effectively eliminate all toxins and maintain homeostasis by itself. Intestinally, this can result in a gradual buildup of impacted fecal matter, parasites, candida, and other toxins. Coffee enemas; however, can effectively alleviate all this by fully irrigating and flushing the colon in such a way as to break up these "nests" of disease, and eliminate them from the body.

5) Coffee enemas detoxify, repair liver. If you regularly suffer from symptoms like bloating, stomach pain, flatulence, and other problems commonly associated with poor digestion, chances are your liver is overburdened and not functioning up to par. Coffee enemas are an excellent way to fix this; however, as the coffee and all of its nutrients are directly absorbed into the liver through the colon wall, where they take on the immense toxic load that the liver is otherwise unable to process quickly enough on its own.

6) Coffee enemas relieve chronic pain, ease "die-off" symptoms during cleanses, detox regimens. Interestingly, one of the earliest known uses for enemas was as a pain reliever. During World War I, nurses actually discovered that water enemas effectively relieved soldiers' pain when drugs like morphine were in short supply. Fast forward about a decade and researchers out of Germany had made the discovery that coffee worked even better than water at offering powerful analgesic benefits, which can be particularly helpful when undergoing other dietary cleanses and detoxes that cause "die-off" and other pain symptoms.

7) Coffee enemas heal and prevent chronic illness. Ultimately, 
coffee enemas are one of the most effective ways to maintain a clean body that is free of disease. Even if you already suffer from a debilitating, chronic illness such as cancer, coffee enemas can provide both relief and healing without the need for drugs. 

No one, seriously determined to affect their disease, would ignore the benefits of this therapy and I could not. It is not good to do them during chemo but absolutely essential to after to help to relieve the toxic load left behind. For me, given the cancer is in my liver, there was even more reason for me not to ignore this approach. Every day (if I can manage it), I sneak to the bathroom with a big pot of coffee. This clearly confuses the boys, and if I am elsewhere, others who may notice me bringing this cooled coffee with me into the bathroom – as I have clearly given up coffee as part of my diet. Why then do I disappear to the bathroom with so much coffee? Well my dark secret is out. I actually have not written about it for fear that my mother might read about it! But I have to be honest and friends who know me urged me to just get it out there as anyone one really committed to healing should have this as a routine part of their daily/weekly programme. I combine them with an Epsom salt bath and find the private time rather soothing. The hoops I am jumping through – I had seriously better get well! 

Finally I am buying an infrared sauna. This also stands out as a solid supportive treatment that stands out as a good complement to everything else I am doing. Here is a description of some of the benefits taken fromhttp://www.cancerdefeated.com/newsletters/Infrared-Saunas-A-Fun-Relaxing-Way-to-Detox.html

…….infrared sauna therapy for cancer offers a combination of healing mechanisms. They act simultaneously to support the fight against cancer. These include:

  1. Hyperthermia: Heating the body is a well-known and underused method of killing cancer cells…. Cancer cells are weaker than normal cells and more susceptible to damage from heat. Infrared saunas are superior for this purpose
  2. Eliminate Toxins: Saunas also help purge the body of toxins, such as heavy metals and chemicals.
  3. Improving circulation. Cancer often grows in tissues with poor circulation and thus poor nutrition and oxygenation. Infrared saunas boost overall circulation. This brings nutrients, hormones, oxygen and other substances to all body tissues.
  4. Decongesting the internal organs. The liver, kidneys and other internal organs can become burdened with estrogen, chemicals, and toxic metals. Infrared saunas cause blood to move toward the body surface. This helps cleanse the internal organs.
  5. Care for your body's largest organ: Your skin is a major organ for eliminating body wastes. But in most people, it's inactive because they don't sweat enough. Infrared saunas help cleanse you from the inside. They encourage sweating and free up toxins stored beneath the skin.

If the cancer is getting active again I have to up my game and adapt what I am doing. The last 3 months have shown me how easy it is to lose the fighting spirit and let doubt creep in. On so many fronts the reality of my situation hits home. I am not sure I even feel like me anymore. Not the me I was. I am not sure what my purpose. Of course it is to love my children and be the best mother, wife, sister, daughter etc. But outside of my own immediate interests I doubt what I have to offer anymore. My life was always full, working for one cause or another. Passionate about making change happen and improving things that in my view were not working, or not fair. But now my daily endeavour is so very self centred and self absorbed. Staying alive. Working to stay alive and well. I get comfort from my work as when I am involved in it I am transported from me and I can engage in conversations which have nothing to do with me and I am reminded of my old life and purpose. But even this has changed. I cannot travel at the moment in the way that I did. My work have been amazing and accommodated and supported me so that I can adapt how I work. I have cut my hours this year as I needed the extra time to fit in all my various potions and anti cancer activities. Giving up, which I certainly considered, would feel as if I was giving in and accepting my future was limited. But I intend for it to be anything but limited in length and in some sense am defiant in my determination not to give up.  Maybe the day will come but if I have my way it will not.   

My recent trip to Germany was more subdued than previous ones. I realise that I will have ups and downs and I need to stick with determination to keeping the faith and working through the downs. If I could only keep the cancer as it is today I could live a normal life (almost). I would like of course to beat it down but living with it in a steady stable state would work. I am not fussy. 

This time I went with Rupert. He has not accompanied before. Ned was on a school trip and Will went to stay with my Mum and Dad so we had the time free. It was a very special time. We spent the first night in Hamburg and our hotel had an attached spa/gym. We decided to go for a swim and use the sauna (a good therapy). We were in for a surprise. There were very strict instructions all around the swimming pool and sauna area that NO swimming costumes were to be worn in the hotpool or sauna. There were middle aged couples wandering around baring all. I am rather body reserved (especially as I am missing a nipple so baring my body is bound to attract attention, if only surreptitious glances). But I was determined to use the sauna and cleverly removed my costume and covered myself with my towel – dropping it only at the very last minute. Rupert went for a swim in the pool (you were allowed your togs on there but not everyone wore them) and had some very interesting views of our fellow swimmers nether regions. The view haunted him all night. At one point Rupert and I were in the pool at the same time swimming and talking when the life guard signalled us. I thought we were going to be told off for wearing swimming costumes in the swimming pool but he just wanted to tell us to be quiet as we were disturbing the other users of the facilities. 

In Gottingen there are about 7 really quite substantial churches. Most of them are shut but this time we managed to visit 2 of them (it is a pretty town but there is not a huge amount to see). The one closest to where we were staying was hosting a major production of Benjamin Brittan’s War Requiem. We managed to get tickets and spent our first night listening to this major choir and orchestra. It was a very peaceful (and at times dramatic) way to spend the evening.

 St Michael's

 St Michael's

The following day, after my treatment, we went to visit one of the other Churches – St Michael’s, which is a Catholic church. It was beautiful and white inside, not what we expected from the old façade. We knelt down for a bit to pray and think and we lit a couple of candles and then discussed what we had prayed about. We both admitted to starting our prayers with a few thank yous and then asking for strength and as we stayed there praying our prayers became more specific – a miracle no less. But if it is possible to heal we should not need a miracle just the strength and guidance to know how to heal. I have not prayed regularly for a long time but more recently I have started. I always feel rather guilty that once I have gone round praying for various people and issues and being grateful for what we have I end up almost pleading that everything be OK and that we will overcome this disease. I am not really sure who I am praying to, I have always had a conflicted relationship with religion, but I do believe it offers a framework and community which can and does give many people strength in difficult times and as I was bought up a Catholic there is such a familiarity walking into a Catholic Church, wherever it is in the world, that I enjoy the atmosphere and space to reflect and yes, pray. A friend of mine from my school days shared a prayer her father had taught her, and which she says she prays for me. It is rather lovely so I thought I would share it.  ‘’Do not be anxious. The same everlasting father who looked after you yesterday will look after you today, tomorrow and always. Either he will protect you from your suffering or he will give you unfailing strength to bear it’. 

The weather there was a few degrees colder than here and it snowed for a couple of days, not really settling, but the snowflakes were wet and heavy. I suffered terribly from the cold despite having bought long johns and thermal long sleeved vests. My loss of excess fat I think has made me really sensitive to the cold and I struggled every time we had to go out into the fresh air. I really am looking forward to the warmth of spring and summer and understand better than ever the misery a cold winter can have on older people. 

Cold at Hamburg Station

Cold at Hamburg Station

It was good that Rupert finally met Dr Martin, as with other companions who have accompanied me, he too was overcome by what a lovely man he is. It was lovely to spend the time together, it has been so long since we have had that long on our own. This is not just my journey, it is his journey too and he has his own demons to face. When one is down we need the other to be in fighting spirits to balance us out. I have been weepy on occasion and he has been good at reminding me of the beauty of every day and that all is still well. I am going to plan more things to look forward to keep our spirits up and engaged with life. Distracted as much as possible, in a good way. 

Ella came home from University to be here when we got back and was ready with my juice. She cooked a curry I could eat, prepared my apricot kernals, massaged my feet before I went to bed and is here for a couple of days and continues to look after me, making sure I keep on my toes and don’t give into any self pity. 

I have not written much over the past 3 months. I have felt rather numb and unimaginative, but I hope to reverse that. I have a hard few months ahead with my new protocols and therapies but hope the sun will come out more often and help me along the way.

Root canals, amalgam fillings, detox, uncertainty and belief

On Monday 11th I had the dental work to remove a root canal with infection at the root and two wisdom teeth, also infected at the root. Cavitation is where there is infection in the jaw. This can be the result of past extractions which have left infection in the jaw which has slowly festered over years. I had cavitation under one wisdom tooth and in the top back of my jaw, on both sides, where I had and teeth removed when I was a teenager. The dentist, a specialist biological (non mercury non fluoride etc dentist), cleaned out the jaw and infections. I also had two amalgams (with mercury) removed. I had very high mercury readings coming from them and have clearly been ingesting this for years. 

Over this period I have read as much as I possibly can about dental toxicity. The dentist works with a detox programme to support you before and then after the removals - to help prevent infection but also to deal with the detox process that comes after removal of amalgams. For some reason once the mercury is moved from the mouth it can mobilise existing mercury and you need to be taking supplements to support / bind with the mercury to exit the body. As part of this process the dentist administers high dose IV vitamin C and glutatione. I returned the following two mornings for additional IV treatment as part of the detox and to aid healing. A week on, the inflammation had for the most part settled down. I am still having trouble eating and cannot chew properly yet, so eat like a rabbit, using the front teeth and where possible I eat soft food. 

Removing-my-Amalgam-Fillings.jpg

I have had some detox reactions. My skin all over has come alive. My skin was my early warning of trouble in my liver - it must by my canary. I have, of course, considered whether this is a symptom of trouble in my liver but I think there is a good enough case for it to be a response to the extraction and detox. If you read about the process the detox process is expected. It does cross my mind but I feel so empowered having had the teeth removed, I feel it unlocks another pathway for healing. The infection was at the very least draining my immune system and at worst dribbling bacteria  into my system and the mercury was poisoning me daily. With them all removed it has given me a psychological boost. There are some people (Bill Henderson who wrote Heal Cancer Gently) who put dental toxicity as very high up on the contributory factors to cancer. He is not alone. I feel positive that at least now my body is not wasting its time on managing these toxins and infections. Detox has other symptoms, foggy brain among them. Dr Martin was clear that I should deal with the mercury and the infections. I reckon immunotherapy approaches are likely to work better if the immune system is not compromised like this. At the very least it has not done me any harm and at most it could be the key that helps strengthen the impact of all the other strategies I am using. 

I was in the chair for about 4.5 hours - and as well as a sore mouth I had a sore jaw. Keeping your mouth open that long is pretty hard. I tried to use all sorts of visualisation to distract my focus from the scraping and drilling and the discomfort. I did pretty well, I think I did anyway. I was not so good at the visualisation but the time did not go too slowly and I felt pretty OK after it. That night and the following morning were the most difficult. Ella came to help me and found all sorts of soft foods I could eat. I have taken the past two weeks slowly, being careful to keep my mouth clean. The last thing I need is an infection - not only would it need treating (and antibiotics are really to be avoided if at all possible to keep building my gut) but it would also give an excuse for those who doubt these treatments are worth it and think they are too invasive. Some of my loved ones did doubt the necessity of doing this. I don't blame them thinking that it is quite aggressive treatment and it self could put temporary strain on my immune system - but I know that anyone who finds themselves in my position would take any approach on its merit and balance the pros and cons and make a judgement. This is what I did and the decision was easy. Let’s hope the detox symptoms do not last long and that my immune system is already benefiting. 

I am having 2 weekly blood tests. The ones before the dental work were OK. The cancer markers were not taken (they should have been) but maybe that is a good thing. If they had been high it would simply have made me unsettled. One of my liver bloods was very slightly raised. I know my bloods and do not like that it was up - but the other liver blood test was normal so for the time being my liver is coping OK. As it was the bloods were good enough for me to feel safe to go ahead with the dental work.

My next visit to Germany was already booked for the week 14th February and we seem so close to it now that I think probably that is when I will go. By then I will have had one more blood test and they will do one also. These, and how I am will determine what I donext. Another round of dendritic cell or start another immunotherapy. I would like to think I am keeping the cancer in its place with my efforts and that we just do another dendritic cell, but if my bloods are not looking so positive Dr Martin may suggest we move to another immunotherapy approach they offer. The longer I can stay away from new treatments the better as each are another rung on a ladder of options open to me. Apart from my skin I feel well. I am sleeping well and feeling good. I need to build up my fitness which is not good. I haven't been able to exercise for a while and really need to bring that back into my daily routine. 

The kids are all back at school/college/university and life feels normal. This is good. One of the benefits of my situation is that I am at home more often as my ability to travel with my job is curtailed. Temporarily I would like to think. For now I have cut my workingweek to 70% time and work from home a lot while I recover from the teeth and as I try and avoid the travel to London on what must be the worst trainline ever. Ever since I can remember the line from Brighton to London is subject to work during the weekends, which means bus replacement services. My last two train journeys involved line closure to Three Bridges, train to East Grinstead, Train to East Croydon then train to London. The latest journey stopped at Hassocks as the tunnel through the Downs was flooded. Surely this is not a new phenomenon? Why would we not have a solution to this now? I always have a feeling that one day the work will end and the route to London will be fast and efficient and we will celebrate its ease and our luck to live somewhere so relatively close to London. But it seems easier to get from Birmingham to London. For those who commute the constant staff absences, power lines down, signal failure, points failure etc etc travel to London at the moment is torture. For this reason I try and avoid itas it can take 4-5 hours door to door.

My latest self help cancer book is the one I mentioned above by Bill Henderson. I am going to copy out some of the content in the introduction - which I revisit when I have a wobble. I will pick out some of the content which has been most influential in convincing me that I need to tread a different path. 

I will actually first start with a quote from a book by HaroldW Harper, MD “How you can beat the killer diseases”

What if cancer is systemic, chronic, metabolic disease of which lumps and bumps constitute only symptoms? Will this not mean that billions… have been misspent and that the basic premises on which cancer treatment and research are grounded are wrong? Of course it will, and in decades to come a perplexed future generation will look back in amazement on how current medicine approached cancer with the cobaltmachine, the surgical knife, and the introduction of poisons into the system and wonder if such brutality actually occurred.’ 

From Bill Henderson’s book…

As a bare  minimum, to avoid being damaged by this system, you must educate yourself. You must be prepared to get more then one opinion. Then, when you’ve found the doctor (or homeopath or naturopath) that you trust, you must be prepared to be co-doctor with him or her throughout your treatment. Better yet, get the knowledge you need and heal yourself.’

In summary, CANCER IS NOT A “DISEASE”, it is a symptom of an imbalance in your body! It is simply your own body’s cells. The number of unusual fermenting cells (cancer cells) produced by your daily cell metabolism (division process) has exceeded the ability of  your immune system to handle them. Your stem cells multiply much more rapidly thank cancer cells…so cancer cells are not even the most rapidly dividing cells in your body. They’re just abnormal cells that need to be killed or nurtured back into health.

Our body produces cancer cells every day, by the millions. Our normal cell policing mechanism takes care of them - until it can’t any more. Then we are eventually diagnosed with cancer. 

The cancer probably took years to develop to the point where it was detected. If you need a cause, blame it on your lifestyle. With that understanding, you also know that treating cancer is a lifelong process. Once the cancer is under control, or in “remission” you must continue to keep it there with good lifestyle choices and by supporting you immune system for the rest of your life.

You can look on cancer as a chronic condition, something like hypertension, heart trouble or diabetes. You must keep your body in top-notch cancer fighting shape.

Conventional cancer treatment destroys your immune system. Oncologists pay little attention to rebuilding it or changing your lifestyle. This is why patients with cancer treated with conventional treatment seem to get better, only to have the cancer recur in a few months or years in a more aggressive form. Additionally, the cancer that returns is usually resistant to the previous chemotherapeutic agents used. The weak cancer cells have been killed off by the treatment and the stronger ones survive, only to reproduce themselves. Eventually, all are strong and treatment resistant.’

The book goes on to share non toxic approaches to healing and strengthening your immune system. It is clearly harder once the cancer has spread but in their view and extensive experience of working with thousands of patients, even stage IV patients can heal. For those who have had chemotherapy etc (like me) the road is longer as there is so much to repair along the way.  They review some of the evidence of the effectiveness of chemotherapy (high death rates from the treatment itself not the cancer and almost non existent extension to life) and suggest that for those of us with advanced cancer, it is not surprising oncologists give us such a poor prognosis - they know that what they can offer will not cure it. But if you are prepared to believe that if only you could address the underlying causes (emotional, nutritional, toxins etc) and boost that immune system so it can take back control making your body as inhospitable to cancer then there is a path which could lead to healing. In the authors view ‘the cause of cancer is that in most cases it occurs as a result of 1) an emotional trauma, extended stress etc 2) root canal teeth and/or cavitations (CHECK!). Both of these suppress the immune system and allow cancer (and opportunistic condition) to grow; and 3) what we put in our mouth and body.

In Chapter one the authors list what they call the Four Essentials which they have taken from their experience of working with thousands of people with cancer over a 20 year period. Those who have been successful share four essentials. I will write now only about the first of these.

Essential 1: Attitude

Cancer’ they say ‘ is survivable’. It doesn’t matter what ‘stage’ or type of cancer. All patients with cancer can overcome it and live out their normal lifespan.  People who believe this, with all their heart and soul, get well. Those who doubt it don’t. It’s that simple’  (GULP - I BELIEVE I BELIEVE)

Two things seem to characterise the patients with cancer that we’ve seen get well: First, they have decided to take charge of their own health care; and second, they have committed 100% to some regimen involving eating habits and supplements, and (super important) identifying and reversing the cause(s) of their cancer. 

How do you get and keep this commitment and positive attitude? Gain knowledge about the wide variety of cancer survivors and how they survived. What caused their cancer and how they got over it. Seek them out and talk to them. This is not a search for the ‘magic bullet’ that heals all cancers. There is not such thing.

There are, however, literally hundreds of substances that are non-toxic and natural. Each one alone, or combined with others, has helped thousands of patients with cancer become cancer-free. There are simple lifestyle changes (diet, supplements, exercise, sunshine and emotional peace) that restore health to patients with cancer.

Of course I like to read books written by people who believe that cancer is survivable no matter what the stage. 

I have felt quite lonely ever since the scan. Not alone, but lonely. I spend so much time religiously completing my daily treatments (including some rebounding - bouncing on a small trampoline - good for the lymph system). I am juicing twice a day now. I have added a few things to my regime (including the detox therapy from the Dentist) which includes CBD oil (more about that another time). I am happy to talk about what the latest health news is but it is as if I have become my illness. It dominates my everyday simply because of all the various approaches I am using, but more profoundly it dominates as I live with what I can only call a mental electric fence. The future. You can get close but if you try and cross the line and look to far ahead you get shocked. I believe I can survive but I don’t know it yet, I have not yet reached a point where I can honestly say I have turned a corner. I am not sure what I might have been like had I not taken this path, so perhaps I have already made a great dent in my fight - given I also had immunotherapy together with the lifestyle changes. But while I can talk with others about their future plans (conversations inevitably err toward the future), over the last month or so, I have been so acutely aware of that electric fence. With blood tests every 2-3 weeks and some uncertainty overhanging the recent past my electric fence is really only weeks away. This is the uncertainty I have to learn to live with until I am more sure that my efforts are taking effect. 

I have delayed a blood test by another couple of days. I am being rather ostrich like as really I don't want to know what my bloods say at all. But as I have my next trip to Germany booked, and only a couple of weeks away, I do need to have a status update so Dr Martin and team can decide with me what the next move is. 

Cliff hanger: progression or immunological reaction

My last post was a bit of a cliff hanger. I haven't written since. I was awaiting the results of scan and my appointment with my consultant had been bought forward. Did this mean something or not? 

I am still not sure, but subsequent events would suggest that it was bought forward because the scan results required discussion. Since the date of the scan results I have had a bit of a roller coaster of a time, and as happens with scans and tests, life can about turn on the basis of what they say. I had been feeling really well since my last Germany treatment and had considered not having a scan at all knowing how psychologically hard the process is. But I did have the scan and the result on the scan report was ‘disease progression’.  I did not look at the actual scan, I think i would find it hard keeping the image out of my head. Perhaps it would help with my visualisation (which is pretty poor)?  There was one line on the scan report apart from the conclusion. This read ‘increase in number and size of lesions’. That sounds pretty scary, and scared I was. I turned from a confident warrior to a defeated victim in just a few seconds. I listened, staring at my oncologist as he told me that since they had seen progression they should act on it and he would propose that I start a new round of chemotherapy, Xeloda, which is ‘quite tolerable’ and is taken in pill form so has far less impact on your life. He assured me it was so common that they even kept stocks with them in the hospital and I could start the next day. But I want to explore immunotherapy, before chemotherapy - I said. It does not make sense to me to start a therapy with so many toxic effects and which starts me on the ladder of treatments oncology has mastered for advanced breast cancer, which ends in one place only as far as I can tell. Why could I not try a therapy which focuses on the body’s own defence system, rather than one set to destroy it. Well - simple - they are not available to people like me at this time. Not even as a trial. My oncologist did look for an immunotherapy trial I might be eligible for but they are only open to people with triple negative breast cancer. 

I left the clinic, simply unbelieving - after all I have done. It did not make sense. My liver bloods were fine. I had not had inflammation or tumour marker bloods taken so we had no picture from that. For a day I rather crumpled and retreated to my bedroom, which is where I like to go when things feel too much. I missed my office party, lying under my duvet. I asked for a second opinion and booked to see Prof. D. in London. I also sent my scan to Dr Martin in Gottingen and emailed him directly after my meeting with my oncologist. Later the following day Dr Martin got back and said he was not sure it was definitely progression as it could be a immunological reaction as part of the immunotherapy and he needed to see by bloods. The moment I read Dr Martin’s email my mood totally reversed - I was a fighter again. That made sense to me. Two weeks before the scan I had had dendritic cell therapy and my vaccine had had 11.5 million dendritic cells - more than any previous of my vaccines. I did some more research on immunotherapy and it is clear that while with chemotherapy success can be judged by a change in tumour size (as the intention is to kill rapidly dividing cells), with immunotherapy the response is less clear cut. This is a quote from one paper I found about immunotherapy: ‘…the appearance of new lesions or growth of existing lesions, as immune cell infiltration following immunotherapy may be mistaken for tumour progression. In addition, the unconventional nature of some responses…..have made it necessary to introduce new criteria to characterise anti-tumour activity’.   Basically, there is a chance that what looks like progression could be part of the immunological response. I just wanted to enjoy Xmas and have no doctors or hospital appointments so I was happy with the possibility that this was not progression. I then met with Prof D who confirmedthat withthat PET scans light up with cancer activity but also inflammation and abcessess and that immunotherapies can result in what looks like progression. He then went to another room to look at my scans and came back and said yes he could see 3 bright areas. But then he stared at my blood results and the trend from my first treatment in Germany and he was confused. I liked that - something I am doing is not delivering standard responses. He did though agree that Xeloda was something I should consider in January - which made me think that he thinks it is progression. It was not until I spoke again to Dr Martin, once he had seen my scan and heard results of additional blood tests I had after meeting Prof D, that I decided definitely what to do.  These showed good white / red bloods, good liver, low inflammation markers but a rise in one of my cancer markers (the only one they measured - CA 15-3). Dr Martin told me to enjoy Xmas and do the bloods again in January as what matters is trends - both these readings are a cross section of time and to work out what is going on it is better to have established trends - certainly in this case it is. It matters to me enormously as I have invested so heavily in an immunotherapy - if this is part of the response to that then I certainly do not want to knock things off course with a chemotherapy. If it turns out to be progression - as I cannot get immunotherapies here - I will move to another combination immunotherapy, dendritic cell in combination with another with Dr Martin.

There is another piece to this puzzle which I am taking into account and which has complicated my plans - that is my teeth. In so many of the integrative health literature for cancer I have read about the connection between teeth and in particular, breast cancer. Many practitioners believe that if you have infections in your teeth or toxic mercury, these drain your immune system and threaten cell health etc. Infections from teeth drain into the lymph system that feeds breast area (my basic biology!). Ages ago I booked an appointment with a skilled biological dentist who has written about toxic teeth - and my appointment fell between the scans and blood tests and doctor meetings. I thought my teeth were pretty healthy but it turns out my mouth has mercury levels of 98 (a factory is closed if levels reach 20) and I have a chronic infection under my root canal and two wisdom teeth, plus infection in my jaw. I was rather stunned - I could see the results of the tests and the X-rays - I really do have a toxic mouth. If you believe in the body’s ability to heal then having a toxic mouth will waste or strain my immune strengthening efforts. There are testimonials of people who claim their health only turned around once they had sorted their teeth. Now that I know what is going on in my mouth, and hence my body, I cannot ignore this information. The treatment plan would be relatively drastic with 3 teeth being removed. I was not certainwhat to do although my gut said I should get on and do it. Then, that very evening, at my brothers xmas party I met a friend of his who has a brain tumour and has had some cutting edge immunotherapy (as part of a trial) and who is doing an amazing array of things also to fight his cancer. He said that before he had the immunotherapy his oncologist told him he had to sort out any abscesses in his mouth. I also told Dr Martin about the outcome of my dentist appointment and he also agreed that much stems from the teeth and I should sort out any infectionsetc. So among all of the decision making I am still in the midst of making, Ineed to factor in having some serious dentistry. I need to do this away from my next immunotherapy so I have a chance to heal. I am thinking of the second week of January if I an secure that date. I feel I have to cover every base which has a strong enough case and to me this makes lots of sense. 

I still do not know if it is progression or an immunological reaction. I feel well and with Ella back I have so much help with my diet, juices, relaxation etc and fighting plan. I need to remind myself that I am the only person who can take responsibility for my health. I must trust my gut and I must always believe. I feel well.

A lovely friend who lost her husband a couple of years ago, sent me a book which had comforted her. Victor Frankl Man’s Search for Meaning. He spent a long time in concentration camps in the war and his short book, which he wrote soon after liberation and which has been reprinted so many times, uses reflections of his time there to consider life and how to manage the most difficult of circumstances. It is very powerful and I wanted to copy out some of the paragraphs that have really inspired me. Essentially he reminds us that we have the freedom to choose our attitude. He quotes Nietzche ‘He who has a why to live for can bear with almost any how’. It was also, shock - horror, I learned it was Nietzche who first said ‘What doesn't kill you makes you stronger’. All in all it has been a brilliant book to read to help me steal myself for what lies ahead. Such a strong message comes from this brilliant narrative and that is - hope is everything and the moment you lose your mind your body will quickly follow. 

What alone remains is the last of human freedoms - the ability to choose one’s attitude in a given set of circumstances. 

Those who know how close the connection is between the state of mind of a man - his courage and hope, or lack of them - and the state of immunity of his body will understand that the sudden loss of hope and courage can have a deadly effect. Victor Frankl Man’s Search for Meaning.

I continue with IV Vit C twice a week to help my immune system and my normal regime of juicing and supplements. I need to work on meditation(Ella gave me a great book for xmas to help me with this). Blood tests in first week of Jan.  Teeth perhaps soon after that. Germany - depends on bloods. Keeping the faith....

Had a lovely family Xmas. We had a gathering for Xmas just after my birthday and the kids had bought me a nice black sparkly dress - so out came the wig for a brief outing. If the hair doesn't work change it. 

Waiting for results, making up story lines and Christmas nostalgia

December 3rd 2015

I was teary on the day of my scan, to which I went alone. Happy to be alone. It is almost impossible not to mask your real feelings when you are with someone you love. These moments are very private and I need to be able to simply feel what I feel and express it in private. As last time, the scan involves lying in one place for am hour while the radioactive material and glucose circulates around your body. You are not even allowed to read as the motion of reading allegedly can result in activity showing up in the brain on the scan. I could, I thought, listen and had downloaded a story on my phone in preparation, only to be told that this time I was not even allowed to listen to anything. I was not very happy with this new rule so pushed back. Why could I not listen to anything? The first answer I received was something about brain activity. So I pointed out that I could hear the buzz of the loud air conditioner and if I wasn't listening to a story I would either be listening to the air conditioner as well as thinking deeply about stuff that would, I imagined, create far more brain activity. So she went away to ask her colleagues only to return with news that there had been mixed advice and it as OK I could listen to something. So I lay there for an hour in a windowless, dark room with a camera trained on me (presumably in case I fell off the bed or had a fit) listening to an audio book. It was strangely calming. The scan followed. For this I lie with my arms above my head, very still, as I am moved slowly up and down inside a giant polo shaped machine. This too was quite a calm affair. 

You can’t help though but look through the glass partition between you and the medical staff sitting watching screens of grey shots of your insides. They look from afar rather like photos of strange planetary activity. I am sure I have seen films or seen photos on the internet where the cancer shows up as green lights, spots where the radioactive material disguised in a glucose mixture is identified and gobbled up by cancer. I am not sure they really show up like this on the screen as you are actually being scanned. Perhaps. I did try a little peak to see if I could see any green lights on the screens I could see from my side of the pane of glass. But no luck - just strange grey planets and constellations of stars. I still do not know if the people who take the pictures are qualified to, at the very least, tell if someone they are scanning is full of cancer. Or do they just take the pictures and send it to someone with the skills to interpret them? In this case, as I have a baseline scan, I do know that one of the steps is for the scan to be sent to a consultant who will then compare them with the last one. 

My appointment came through yesterday, for the results. My heart jumped when I got it. The appointment is on 15th December, which is 2 weeks away. It is dangerous trying to read the tea leaves, but I think if I had been called in for an appointment very soon after the scan I would feel more nervous. I have to assume he has looked at the scan report and at the very least has not seen anything that requires immediate action. Alternatively it could be that things are very busy before xmas and this is the first appointment slot I could get. Whatever the reason - I have 2 weeks. I am not bothered by the 2 weeks, I am not really very keen to know the results I want to trust that my body will tell me if something suspicious is going on. And at the moment I feel generally pretty well. 

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My life feels rather like a story. A gripping tale, a page turner. I am impatient to speed read, skip some pages and find out what happens in the end. Who doesn’t? The last time I felt this so acutely was one New Year when I was about 20. A group of us were sitting around a fire in a cottage in deepest rural Wales pondering life and the universe and someone asked what we would like to be doing this time in 10 years. The responses were really rather simple and similar. Apart from ‘end world poverty’ or ‘have made my first million’ type answers most wanted to be in a happy relationship. I remember clearly that I said I wanted to be married and would have 3 children by then. I closed my eyes and saw a picture of me with a little family around me, I could see bodies but no faces. I often think of that New Year as by 30 I had in fact met the love of my life and I did have 3 children (only just). Those early years of adulthood are strange, you live for now but work for the future knowing you are laying down the foundations that will set you up for the next part of your life and your career. Playing with relationships. Learning about yourself and navigating the world as an independent person for the first time. Wonderingwhere you will be and if your hopes will become real. It is no too late for anything. 

Have you ever come across those story books where children can choose what happens next and thereby affect the course of the story, and of course the ending. My story feels similar in that at any moment the story line could lurch in a totally different direction. An appointment to receive the results of a scan is one of those concrete moments which might move the direction of the story away from the path I would choose if I was that child deciding what I would like to happen next.  

But I can influence what happens day by day and my ambitions at that level are easier to achieve. A coping strategy is to simply not consider in any depth the different paths I could take. Spending time considering these paths takes up energy and makes the here and now less settled. So best to be avoided.

I have been enjoying the nostalgia of Xmas, the lights and smells. I have felt sad about some of the smells however. The smell of mulled wine and hot chocolate with cream. These are not on my list of allowed drinks - too sugary and too dairy. I have been more extravagant than normal in buying decorations for the house. Partly because every year I curtail my spending on anything other than essentials, which means this year I am applying the ‘sea view’ rules. My Aunt, after she was diagnosed with ovarian cancer and considered terminal, went with her husband for a few short holidays during which they initiated the ‘sea view’ rule when selecting rooms to stay, but this extended to other decisions. She bought herself a lovely new coat just months before she died. Why not? I am being slightly contradictory however, as my intention is to be around for the long term and extravagance can only be sustained for so long. So mine is tempered extravagance. I have just bought some new baubles for the tree. Baubles are items that in my view become family heirlooms. Every child has a memory of hanging their favourite bauble or decoration on the tree, whether they be beautiful old glass creations or cloth monstrosities made at primary school and extracted year on year when the xmas decoration box comes out. 

When I met Rupert at just 23 I had never ever spent a christmas away from home. On our first Xmas together (we were engaged by then), he came home to my Mum and Dads to celebrate with them, my siblings and cousins. We spent our second Xmas with them also, this time taking Ella who was five months by then. By our third Xmas together I was pregnant with Tom, and feeling bit ropey. Rupert, who was from a far smaller family, was relishing the idea of a quiet Xmas alone. All I did was mope at the silence and lack of chaos and when my family called to during Xmas lunch, to wish me happy Xmas I simply burst into tears. I could hear the noise and jovial laughs and screeches in the background and was slowly passed around the table to talk to the broader family. Since then we have grown our own family, and usually alternated Xmas - but now the children have a voice and they love the chaos of a Christmas at my parents andwith their cousins. Rupert is now fully initiated and we spend slightly more Xmas’s there. As his parents are now not with us there is less reason to stay at home.  

With Rupert away in America at the moment, and Ella in London, the boys and I took responsibility for the tree. We decorated it yesterday with the usual arguments about what decoration goes where. Basically anything considered too gaudy or garish gets banished to the back of the tree, the side that looks out of the window onto the street, and the pretty baubles hang front ways so that we can enjoy them. There is a particular glittery plastic snowman which Ned kept shifting to the front when he thought no one was looking - it is now down one of the sides in a compromise position. 

I found a moment to look through my 1985 diary - I am 14. The diary itself is still very tiny with little space to write anything in any particular depth. It communicates the life of a young teenager. Lots of swearing creeping in and frequent miserable ‘I am so depressed’ type entries followed unexpectedly by a sudden rush of love for life.  In that year we moved to an army base in Germany, just as my friends were building social lives (that included meeting boys - remember I was at an all girls covent) and planning and going to parties. Who is having what party and who is going to it is a dominant theme. A few names of boys are introduced. In those days you were lucky to get a moment on the payphone at school, and if you did you were even luckier if the person you wanted to speak to at the other end could be found or was free to talk. So we relied much on letters. Some of my entries start ‘I got 4 letters today!’. The power of the letter. An affirmation that someone is thinking of you and you are important to someone. I am not sure if life for teenagers today is better or worse - with social media there are constant and frequent opportunities for affirmations, so gaps without any communications for any extended period are almost unknown. In 1985 you could go for weeks with only a letter from your Mum. In that year there is anticipation around Valentines Day, might I get a card or two? The answer was no. No card, except of course my loyal Mum who of course sent me one. But that in those days counted only in as much as I at least received an envelope when post was handed out. 

Moving to Germany felt to my 14 year old self like social suicide. I knew no one. My mother signed my older sister and I up to a tennis course during the summer break. I was mortified to find that I was in the 13 and 14 year old age group (i considered myself far more mature and the idea of mixing with immature 13 year olds was almost too much). My older sister who was 15 at this time, joined the far cooler 15 to 16 age group and was soon invited to join some of them to some evening social event, to my consternation. We we just one school year apart. It did not take long for me to warm to the place and to meet people. In the end I had a great 2-3 years there and it was a wonderful safe place to grow up during those teenage years. 

It was in 1985 that I had the operation to remove the lump (which turned out to be a cyst) in my left breast. Could this have been the very start of the foundation of where I am today? It was in the identical position to the lump they removed 5 years ago. In my diary I clearly am more interested in the excruciating embarrassment of having to go into hospital for something to do with my relatively newly growing breasts than the physical discomfort, which I remember well as I left with a huge bandage covering my top half for a while. I had to walk with my hands in front of my chest to protect myself from the crowds at school as children pushed and shoved down narrow corridors at change of lessons or meal times. 

I have just received a call from my oncologists secretary asking if they could bring my appointment forward to tomorrow. Even seeing her name on my phone makes me go cold. She says it is because she had booked me the 15th when she saw my results were in as it is busy before Xmas and had told my oncologist who then said he wanted to see me sooner as he did not like leaving people for that long after a scan. I pressed a little wanting to know if there was any urgency in this. She could only say that it really was that he does not like to keep people waiting. I suppose either way it is not good to have too big a gap psychologically. I could be staying awake at night in a fear. Instead I am rather enjoying my not knowing as I feel so well, I hope this is a strong enough indicator of how I am. But there is that little worm. My appointment is later in the day tomorrow and I will have bloods taken in the morning. Gulp. I will distract myself with work, chores, xmas and audiobooks.

Scan tomorrow, Xmas and living life just in case

I have had my fifth vaccine and my final one of this group of five. If all is well I would go back again now in 3 months and I have a provisional date booked in February. BUT - I will have a scan before then to be sure that from all perspectives I am in a good place. My bloods were slightly mixed, which is annoying given it was the last vaccine of the five. I had a horrible cold a few days before travelling and was still snotty and sneezy while there, but getting better. My liver bloods were very good and so weremost other results (including e.g. haemaglobin), but my circulating cancer cell count and the breast cancer marker, plus my inflammation marker were all slightly up and higher than last time. But it would not be unexpected for these to be affected by a virus or infection.  So the news was not bad but in Dr Martins words ‘goodish’. It is frustrating that I was ill as I am not sure if these results actually indicate some change or really just reflect me being ill. So I have agreed to a scan. I had previously decided I did not want one, not just because it exposes me to nasties but because psychologically it is really hard. But Dr Martin and my oncologist here are working slightly blind without that information. Dr Martin has a Plan B up his sleeve but needs to be sure if and when to use it. In my mind there are three outcomes - 1) it is the same as before - this will be disappointing but stable disease is not bad, and if this is the case I go back for my next dendritic cell in February 2) it is better than before - if so also I go back in Feb 3) it is worse / and or somewhere else - I go back sooner for Plan B.  The very thought of option 3 is terrible and I am not sure I would be that happy with option 1. 

The scan is booked for tomorrow (Thursday 26th). Gulp. 

Last blog I wrote about hyperbaric oxygen therapy. Well I could not attend the session I was booked on before my trip to Germany because I was snotty and had bad ears. I had a session last week and all last night my ears have given me gip - and I am wondering if maybe it was the HBO sessions that triggered my first cold, which started in my ears. I need my immune system to be fighting my cancer and not diverted by a cold or ear infection, so I think maybe HBO is maybe not right for me. As a child I suffered terrible ear aches and infections, maybe I am not very good at dealing with the pressure changes. I may still go and just breath the oxygen, but outside the chamber and so not under pressure. 

I am going to whinge again about juicing. Juicing is a mainstay of my healing plan. But I simply hate it. I have had some many very kind suggestions about how to make nice juices but the reality is that to get enough mainly organic vegetables etc it costs money and take loads of time. You need a certain mix to get enough juice to make a large enough drink. It is easy to run out of some of the core juicing ingredients and be left with vegetables which I only use minimally or which don't produce much liquid. Replacing my stocks is a job in itself as there is no very local source. While I am lucky to live in Brighton, my normal source (over and above a juice box I have delivered but get through very quickly) is Infinity Foods. A trip there takes time and my week is pretty full already with my work, the kids, making the stupid juices, trying to fit in exercise and yoga (which I also am having trouble to keep up with). So not only is it difficult to simply get the ingredients, if you run out of the mixture that is more palatable - you can't just throw the rest away you have to work your way through them which means the quality and taste of the juices deteriorates. Knowing what makes a nice juice and having the right mix of ingredients all the time are practically incompatible. Oh, and have I complained about the actual time it takes to clear up after you. I was spoilt to have Ella most of this year, but withher gone I now realise quite what goes into the whole process. The drinking of the juice is a miserable affair. This is probably halting all my enzymes from working, so I try and make it not a miserable affair and cut up pieces of foods to eat in-between each mouthful to cover up the taste. I think when I started I was up for anything to fight the beast. As time has gone by, I am still totally devoted to survival but the reality that this is now my lifelong focus is hitting home and that is hard. Keeping my supplements in stock, preparing them each morning, juicing, trying to work out what to eat (when I have literally no cook gene in me and now I have cut the amount of food types I can eat the task is even more difficult), booking oncologist appointments, scans, having my monthly injection to keep me in menopause (which also hate), my appointment to talk to a consultant about removing my ovaries and on and on. 

Tom (my 17 year old) would say to that rant ‘Mum, that’s a lot of hating!’. It just seems rather interminable. I know what my long game is and this is how I will achieve it but that does not mean I don't get tired with it and wish it was all back to normal. I have gone off alcohol, so I don't physically miss it, but socially I do. Evenings with Rupert, snuggled at home in front of a fire with a nice glass of wine. They are not all gone but I need my sleep (part of treatment plan) and do get tired (hormones and diet). Things have changed. And for Rupert too. For all of us. We are so privileged to be so happy as a family and I would prefer to be in the situation I am in now having experienced that happiness and love than to never have done so and be healthy. But I can't deny there are times when the foreverness of my situation hits me. However long forever is. 

When I was first diagnosed, in those very first terrifying moments when simply everything poured into my head in one go I remember thinking ‘Is that it?’ Most of my thoughts if I am honest were practical. Would I go to work the next day? Would I ever go to work? How would I organise the next few months (which I must have assumed I had)? At home every time I opened a drawer or a cupboard I just saw stuff and it all seemed so meaningless. Now I am denying death, I don't think like that anymore. In fact it is those very thoughts that indicate you have given up already and are preparing for death not living life. As I grew in determination to heal and live I found a new energy. It is hard I realise to keep that focus. My hormone injections make me very tired for a few days and when I am tired the shadows lurking in the dark start moving in. I start to doubt and I feel fear. My scan tomorrow has me all disturbed. What is it going to show? And what will I do with that information. 

I did think about postponing it until after Xmas, but I decided I would simply drag out the uncertainty. I spoke with Ella yesterday who reminded me - is everything OK right now? then everything is OK. 

Christmas is approaching far too fast. Last year before Xmas we invited friends and neighbours for a drink or to celebrate, and we will do the same this year. I had cancer in my liver last year, I just did not know I did. However much I am living for now and presuming life I cannot help but have a, just in case, approach to everything. For years I have fought the kids desire for a chocolate advent calendar (although they always seem to get one one way or another) but this year I bought them a hideously expensive one at Hamburg airport - just in case. I am fiercely building those memories, just in case. I like to put the Xmas tree up earlier than Rupert, but he is travelling to work for the first 10 days of December so I have decreed that if the xmas trees are for sale at our local supplier this weekend we will get ours before he leaves - so we can enjoy it for the longest possible time. Just in case.

I will find out what my scan says in a week or so. 

 

Growing curly gracefully; adding to my healing arsenal and diving 16ft

My hair is growing thick and fast and brown and curly (see pictures of me looking smiley). Since a child I have been blond. Originally very, very blond and as I grew into my teens it started getting darker and more mousey until I discovered hydrogen peroxide. This was my standard hair lightener for a couple of years until I was old enough and rich enough to go to a real hair dresser where I was introduced to the torture of the plastic cap. A cap covered in tiny holes which they would squeeze onto your head. They used ametal instrumentto pull strips of hair out through the holes. You ended up looking like a mad professor or someone who had stuck their finger onto a live wire. I endured many many such sessions. With very thick hair to start with my head would throb like mad, but for beauty I endured. It took years before they discovered more dignified and less painful ways to colour hair. What I never considered then was the amount of chemical rubbish I was exposing myself to. Years and years of yuk. I would have been better off sticking with the hydrogen peroxide - which turns out to have many good properties (the version made for human consumption). After my last bout of chemo and hair loss I considered just gutting it and going brown, but I simply could not. I had never considered myself particularly exercised about my looks but clearly I am. I had grown up a blond, it was part of my identity. So I continued to dye my hair even after my first cancer. This time, in my pure and clean living - there is no way I will be returning for any toxic hair colouring. So begins my life as a nearly brunette (with the very very odd white hair). I may need the skills of a good hair dresser though as I get through the next painful stage of hair growth. It has come through again curly. Not as tight curls as last time - the chemo curl, but still curly. Within a short while it will just be big hair, out of control. But I want to grow it back to a length I am used to and this means getting through the next few months as gracefully as possible. 

The problem and joy of having advanced cancer, is that everyone is supremely lovely to you. Which in most cases is something that just makes me feel loved and supported. Except when I suspect they just want to make me feel good - I doubt the many lovely comments about how well I suit short brown curly hair - even though I appreciate them greatly. 

My recent and fourth trip to Germany was good. I went with my friend Kate who helped distract me with gossip and suduku. I try and play this to combat chemo brain and the effect of hormones which also impact the brain. The travel there was straight forward, we flew from Heathrow to Hamburg and caught the train to Gottingen, my usual route. On the Thursday I had my bloods taken, with the results were shared with me on the Friday. For some reason I was far more nervous this time getting the results. I had had a pain around my liver and just contemplating the idea that the results might indicate some progression was terrifying. I have been so strong in my resolve and belief that I can conquer this, but at moments like that you know that in a second that resolve could just crack.   

Dr Martin looks at a number of things to determine how I am doing. My weight (which has gone down but not since last time, this was weight I lost earlier on when I changed my diet so radically); my liver markers, my inflammation markers, white cell count etc, breast cancer marker and my cancer load. He also asks how I am and generally takes on board how I look. On the Friday I came into the clinic, already nervous, knowing I would hear my results soon. The time before, I had met him at the reception before I even started my treatment and he had told me there and then he was happy about my results. This time he was not at the reception, only Christina the nurse was, and she was very busy. I could see my results sitting on her desk. No one said anything, so of course I started imagining the worst and from that moment on began to read into everything Christina did or said. Why was she not telling me what they said? Was she avoiding my eye? Surely she knows! I am desperate to know what they say and her silence has to mean that she cannot bring herself to mention them in case she reveals the truth and that is Dr Martin’s job. The reality was, she was busy as they were closing the clinic for their annual holiday and so had to squeeze in more appointments than usual and it is not her job to communicate results to patients anyway. Dr Martin was busy and I only got to see him at past midday, just before he administered my vaccine. When he did come in with my results in his hand, he communicated them as if he had expected nothing less and could not understand why I had been in such turmoil. I took that to mean that perhaps he has seen a trend and therefore had some sense of what to expect, and given my good health he was not surprised by them. The liver bloods were all good, the white cell count still bit low - but he puts this down to all the chemo I have had which has affected my bone marrow, my inflammation markers were very low and my iron was good (cancer gobbles iron when it starts progressing). My circulating cancer cell (CEA) was down from 4.3 last time to 3.0. The only marker that he admitted he would have liked to have seen more change was my breast cancer maker CA 125 - this is just under double the high point of the normal range - it has reduced slightly from last time but not lots. He did though say, and I have read much about this, that this can be an unpredictable marker and can confuse the picture - so should not be taken alone. I still would have liked to see it going down more, but I will give it time :). 

The relief took a while to sink in. The treatment makes me a bit tired and after the vaccine I get the interferon and related fever. This time however the fever was less than the time before. I have been taking and recording my temperature since my second vaccine, to compare how I respond. The first time I did this (during the heat of the summer), my temperature peaked at 39.2 degrees. Last time it peaked at 38.7 and this time it was only 38.2 and the fever took longer to come on and lasted for less time. I asked Dr Martin about this and his response was that this is because there is less cancer around my body to fight. 

On the Saturday morning, the day after the vaccine, I had my last hyperthermia treatment after which we made our way to the train station. We had seats on a BA flight that left at 16.50 and we were catching the 11.43 train from Gottingen to get into Hamburg 2 hours later. This has proved a comfortable transit time from the station to the airport with time for lunch. This time we encountered the mother of all train disasters which meant we missed our flight and the next one and ended up having to book a room into an airport hotel and catch the early flight on that Sunday morning. 

UK Rail network at its best

UK Rail network at its best

It all started with an announcement that the train was running 20 minutes late. This was not bad as we had some leeway. We got on the late train and found a seat in one of the nice Harry Potter compartments and settled down to some suduku and reading, feeling quite relaxed. And then the train stopped. And it did not start again. It had stopped in the middle of a very rural area with a small road which ran parallel to the train line and a crop field. So the view was pretty at least. Phone connection however was not so good. I am so used to hopeless disastrous journeys on the UK rail network I was rather shocked that the German network could and did suffer them also. We had a nice man in our compartment who translated all the announcements and we got a good insight into how the German rail network deals with a broken down train situation. Actually, it was not the train it was the power line, which a previous train had damaged. First, they kept us regularly updated. Second, they offered all passengers free drinks. Then, worried that people would start getting too hot and need air, as the air conditioning system (along with the water and flush function in the loos) had stopped with no power also. So they opened the doors of the train. We then saw a group of young people with rucksacks who had clearly decided they were not going to wait for the problem to resolve, and they jumped off the train and we saw them walking past us down the little road, smiling and laughing. But then they closed the doors again. They obviously decided that opening the doors was not a very safe thing to do, until of course the fire brigade arrived. The firemen stopped outside our carriage so we got a prime time seat and could watch what was going on. They all looked as if they had just got out of bed and and were happy for the overtime. Being called up on a weekend was not a usual occurrence. They brought crates of bottles of water which they left in the doorways of the carriages to make sure people were hydrated. Then they brought a medic onto the train and walked up and down to check there were no medical emergencies that needed attention. Meanwhile they keep us updated.  It became clear that the delay is going to be quite long and they are looking for anengine that could shunt the train past the section of broken power cables. But arranging this would take time. Other trains on the line had been evacuated and passengers taken by buses, but they had run out of buses.

All this time we are trying to work out what to do and thank goodness Rupert was at homeand my phone had some connection for phone but not for internet. He spent almost 4 hours on and off the phone with us and on the phone with BA trying to rebook us onto another flight. We paid a £100 transfer fee for the later flight, but we missed this also. At one point we worked out that the train had come to a halt relatively near Hannover and there was a later plane from there if we could catch it. So we decided that once the train was shunted past the broken cables we would get off at the next station where they would reconnect the train to the cables, and we would catch a taxi to Hannover. If we stayed on the train to Hamburg we would certainly miss the last plane from there.  Funnily enough hundreds of other people from this and earlier trains, had decided to get off at this station too, and we found ourselves in a tiny, middle of nowhere town with crowds of people desperately working out how to get out. No taxis. No motels. Nothing. After a few failed attempts to find someone who might drive us we realised we had no choice but to get ourselves back to Hamburg and accept we were not going to get home that night. At that point we had a slightly frantic charge back to the train we had just got off, and which was preparing to leave. Thank goodness we made it back on or we would possibly still be in that tiny little place. 

Through all of this the atmosphere on the train was that of one big party. There was one group dressed in traditional costume who were clearly on their way to some festival or party. They had boxes of alcohol and when the train stopped they started working their way through it. Singing loudly and eventually, after a few hours, collapsing in various states of disarray, across the carriage. We had to pass them all when we moved to the front of the train to get off at the small station. There were a couple sprawled in the passage connecting two carriages, who were literally so drunk they could not move their legs out of the way, even though they tried. I think we may have run over a least a foot with our suitcases as we squeezed past. Then, when the train finally pulled away, I noticed a large group of our carriage standing up looking through the window, smiling and waving frantically. There was film crew on the platform. This was clearly such a rare event it hit the local and who knows, possibly the national news. I forgot to mention the compensation forms which were handed out personally to each passenger with an explanation of how to claim for the delay. Wow. 

I have added to my treatment regime. My hope is that all will be well and even better at my next German visit. This will be the last of the group of five that is part of this dendritic cell therapy. If all OK I will move to one vaccine every three months. So I have been reflecting on my regime to make sure I build on it to keep that healing going through the 3 month gap between vaccines. Here are some of the changes I have made.

I am trying to increase my juicing. I had been having a pint a day. I am working to increase this to 2 pints a day. I use almost 95% organic vegetables when I make it myself, but I have started buying the odd juice from the Station juice van. It is hard when I am working in London (which I do about twice a week) to actually fit in making the juice, let alone sourcing the content and being a Mum to the boys and all this entails (even when I am to going to London).

Next - I am in the middle of a parasite cleanse. This was something, as I noted in my last blog that Chris Woollams from Cancer Active suggested. I have travelled all my life and to many many different countries. We all have parasites (good and bad), but if your load is too great they simply compete with you for nutrients. Many simply live in your liver - and I need to give my liver the best chance of being healthy, so for me it was a no brainer. I use a Neways product called Parafree (which has black walnut in it). I continue with my super artemisinin and then I supplement with a good probiotic and continue with daily sauerkraut to build up my gut flora etc. The course was 25 days with a 5 day break and I am on the second 25 day stint, to kill any last nasties. I certainly felt a bit headachy when I started and I read up where I could about peoples experience of parasite cleanses. What I learnt was that side effects are related to death of parasites racing round your blood and your body trying to manage this all. It also confirmed that I would suggest anyone with cancer consider this as an approach. It just seems logical. So much of your immunity depends on your gut and if you are competing for nutrients etc best get rid of the bugs. 

I have also started taking 100mg of aspirin daily and cimetidine. I also take 500mg of metformin twice a day.

Why Cimetidine? 

Well Cimetidine is a type of anti histamine used for heart burn - it is also known by its brand name Tagamet. The lifeextension.com website describes it like this ‘Although cimetidine was developed to relieve heartburn, acid indigestion and sour stomach, numerous studies demonstrate that this readily available medication may offer powerful support in the fight against cancer. Unfortunately, many cancer patients and even oncologists remain unaware of the compelling evidence demonstrating its efficacy.  By preventing cancer metastasis (spread), slowing or halting tumour growth, and prolonging survival, cimetidine may serve as an important adjuvant therapy for people fighting colon cancer and other malignancies’

Why aspirin? 

I have known for a while that studies have indicated that long term aspirin use can reduce the likelihood of recurrence and I had even been thinking about starting it before I was diagnosed this time, but never did. The evidence is only growing that it can e.g. slow the spread of lung cancer by 20% to 30% and that taking a low dose aspirin a day for more than 10 years can drop stomach cancer deaths by 31%. According to the MD Anderson Cancer Centre a study of recovering breast cancer patients found those how took a daily aspirin for 3 - 5 years were 60% less likely to suffer from a recurrence. The aspirin swallowers also were 71% less likely to die as a result of breast cancer. If only I had acted sooner!

Finally why metformin?

If you have not already watched the Surviving Terminal Cancer documentary (link on resources page), please do. It features the story of Professor Ben Williams who was diagnosed with a tumour in March 1995. The entire right side of his brain was “infested with a tumour”. He took his treatment into his own hands and is inspiration to many people like me. Cancer will find all sorts of routes to thrive and this calls for multiple approaches to block and confuse the cancer. Single therapies will never last long as the cancer will simply re-route. And so Ben Williams built himself a regime which included a whole range of drugs, many of which I am using and a good number what are called repurposed drugsi.e. designed for some other condition but with cancer prevention/fighting component - such as aspirin. Among the drugs he used was metformin, which is originally a drug used for diabetics. Here is what Professor Dalgleish says about it (and other drugs I am taking):

“Say we have a patient who is fit and healthy in many ways but is going to be dead within a few months. If that patient asks me ‘Is there anything else I can do?’ I will say ‘Yes. The data suggests you could consider metformin which appears to selectively reduce glucose uptake by tumour cells as opposed to normal cells. I suggest aspirin to tackle your inflammation and let’s correct your Vitamin D levels to boost your immune system’.

I do not know what Prof Dalgleish would think about hyperbaric oxygen therapy as this is another treatment I have just introduced to my armoury and I will talk about this a bit later. First I wanted to talk about the recent documentaries by Ty Bolinger and the Truth About Cancer crew. I have been watching this avidly. I shared the link on the Cancer is Pants Facebook (https://go.thetruthaboutcancer.com). He produced a series last year and I saw a couple of them. This year the series was more hi tech and professional. They released one a day for nine days so for the past week or so I have been glued to these. I honestly believe anyone who is affected by cancer, either themselves or a loved one, should watch this series. It is a bit ‘believe in God and he will give you the answer’, an underlying creationist theme that bubbles up now and again, there is also a bit too much soft focus lens on Ty and his family. But if you can overlook that, just listen there is loads of good information and importantly, hope. I have also grown to rather like Ty and his wife Charlene and am thankful for them sticking their necks out and pulling this together, so I am OK with soft focus. They feature what they call ‘cancer conquerers’, people who have had really dire prognosis and who have lived. They tell their stories about what it was that they did to beat cancer. These are the best sorts of stories for someone like me. Just hearing a real live person who was stage IV and who is living now many years on just makes all the difference. If just one person has managed to defy the odds then why can’t I? But what is clear to me is that there are many more than one person, there are a good number covered here and in the book Radical Remissions and elsewhere. The message of the documentary series is - cancer does not have to be a death sentence. Take control of your healing. They interview a whole range of practitioners from over the world who support people with cancer and who use a range of different, importantly non toxic, therapies. One, called RIGVIR, is a new virus based approach which was discovered in Latvia, and has had really impressive results (documented in scientific journals) with a range of cancers. It is currently registered for use in Latvia and people in Latvia with melanoma can get it on their health system. For other cancers it is still available only privately. But, if I was not doing Dendritic Cell Therapy this would definitely be a treatment I would explore. 

There is a very explicit anti big pharma and the ‘conventional’ medical establishment message. I am in no doubt that cancer research and cancer treatment is dominated by a treatment approach that is far too commercially driven and which has, as a result, either directly or indirectly suppressed alternative promising treatments that are not radiotherapy, surgery or chemotherapy. For those oncologists who might have watched this I can imagine they feel rather bashed and as if they were all part of some deliberate plan to cause unnecessary pain and harm to their patients for commercial gain. This is unfortunate as there is some good substance in the series - and if only we really could engage oncologists and cancer research in a more cooperative way there would not be what feels like two extreme camps. What can each learn from the other? There are too many examples of doctors who offer alternative therapies being what can only be called persecuted and patients prevented from exercising choice and accessing other treatments for there to be no sniff of conspiracy. Why would the FDA or equivalent get so hot under the collar over apricot kernels or other different approaches? They are quite OK allowing people to have treatments which are well documented to have some horrible toxic effects and limited if any chance of prolonging life yet they are prepared to throw millions (mainly, but not exclusively in the USA) trying to close down clinics and prosecute practitioners who offer another way. It is not as if we have made much progress in the fight against cancer - we still have similar miserable outcomes as years ago. 

We are just better at diagnosing early (this helps but by the time there is a solid tumor the cancer has already been around for a very long time) and we are making some strides in alternative approaches but lets hope you are alive in time to see any of them being made available to those of us with advanced cancer now. 

If the series is rather ardently anti conventional therapies it is I would suggest frustration from the efforts that have been made to silence any alternative view. In the UK, oncologists are shackled by the protocols they have to follow. For some of the above medicines I am using I have had to seek out alternative means of accessing them because, despite well documented potential benefits of these low cost drugs, oncologists do not seem to have the liberty to prescribe any of them. They have the straight jacket of protocol.

I am still interested in investigating what is happening with the Medical Innovations Bill which I have heard the Lib Dems partly scuppered prior to the election. I can’t admit to any insights but understand it will have another hearing. I want to find out if this would open the door to more flexibility in the treatment of advance cancer patients to enable a more imaginative and personalised treatment plan and increase access to trial drugs before our immune system has been utterly devastated by round after round of chemo. 

Mainly the series helped me not feel alone and gave me more fight. It is difficult not to doubt and to feel unsure, but when you hear from around the world, stories of survivors and different treatment alternatives I have hope. Concrete, tangible hope and so I continue with my regime, upping my juices, sticking to my diet and supplements and now adding Hyperbaric Oxygen Therapy.

Hyperbaric Oxygen Therapy

HBOT has support as an aid in cancer treatment and so I decided to find out more. The argument, according to the Cancer Active website runs that ‘using a Hyperbaric Chamber (which is designed to increase blood oxygen levels and is proven to work in this way with a number of illnesses), will overcome one of the main influences of cancer, namely that cancer exists in a low-oxygen environment and plentiful oxygen can kill it off. HBOT has been shown to significantly reduce inflammation in the body and this can be a precursor to cancer.  The site reviews some of the evidence which shows it is already used to good effect when used with radiotherapy where it seems to reduce tissue damage and side effects. Some centres use it to improve the uptake of chemotherapy drugs and improve results. Research has also shown that HBOT not only increases the oxygen levels in the body’s healthy and radiation damaged tissue but it will also increase the oxygen levels in cancer therapy.’ 

It was a scientist called Otto Warburg in the 1930s who won a Nobel prize for demonstrating that oxygen was the enemy of the cancer cell and that it killed them. Cancer cells thrive in an environment where oxygen is depleted (hypoxia). Since that time many cancer experts have considered ways of delivering oxygen to cancerous tissue in the hope of killing the cancer cells and restoring the tissue to a normal state. 

But - it seems that while there is little doubt that oxygen kills cancer cells the issue is how to deliver it so that it can - and there is little hard research evidence to show that HBOT adds value as a stand alone treatment. If combined with a ketogenic diet it does however show more promise. A ketogenic diet is one involving a high ‘good fat’, low carbohydrate and lowish protein combination. I think, without explicitly choosing a ketogenic diet I am in fact already on one (possibly I need more fat). I know there is research that HBOT can extend remission of MS patients and help reduce some of the painful symptoms and slow progression. It is also used sometimes to support wound repair in situations where wounds are having trouble healing - because the oxygen supports tissue repair. 

More research is clearly needed but from what I have read I am sufficiently convinced that - (my golden rule) - it will do no harm and has a good chance of doing some good if I continue a ketogenic diet. So I tracked down the nearest place which offers HBOT therapy. This is a centre for MS patients but if there is space people with advanced cancer can ‘dive’. It is a whole new world which involves walking into what looks like half a diving bell, with little port hole windows. It fits 5 people at a time and dives last an hour. As a beginner I started with a 16ft dive. I will gradually move up to 24ft and then 33ft and need at least 15 sessions in the next 6 weeks to achieve saturation of the blood. 

I had my first dive a few days ago. I was a bit nervous. I had my official introduction and safety talk, which included how to communicate with the outside once the door was closed and the pressure began to drop. The chamber fits 5 chairs snuggly, each with a sort of airline table which can be pulled up so you can lean your magazine or book on it. My first dive included one person in a wheelchair, whose chair fitted into one space and a second person in a wheelchair transferred to a chair like the one I was in. All four of my fellow divers were very experienced divers and had been coming, some for many many years, and told me about the impact they felt they received from the treatment. I was the only cancer sufferer (I dislike that word, I am not suffering at the moment and don’t intend to - do I call myself a patient - I suppose I am). I was the only cancer patient. It was only fair to share this with them as they were very kind and wanted to help me, as it is all quite strange to start with. But as I did not have MS I would not experience the same benefit as they do. Introducing myself as ‘Louise, I have stage IV cancer’ always causes a degree of shock and I feel rather unfair even sharing this information and often would not. But in this situation it was necessary. I spend my days with mainly healthy people facing the uncertainties of life, just as I did before my diagnosis - but who invest time and energy preparing for the future, whatever that might be, making decisions for today with an eye to the impact a number of years hence. Just as I did. Here I was with people who face everyday physical and psychological struggles linked to their condition - just like me. Except in this situation, being stage IV perhaps I represented an even more extreme diagnosis than them. Maybe not. But it was strange to be with this group of people I did not know, who had clearly struggled for far longer than I have and who were so warm and kind. We didn't get long to talk before the door was shut and we put on our masks as the pressure went down. It is like going up or down in an airplane and you have to equalise your ears while the pressure changes. Then you sit there for an hour breathing oxygen through a mask (making the sort of sound I am sure you hear if you are a real diver as you breath in). You can’t talk (unless you take your mask off) but you can read and even use your iphone/ iPad. I did think I would try and visulise healing but if I did not distract myselftime slowed down and I felt a bit hot, uncomfortable and nauseous. So I text a few people, did some work and read some rubbish magazines. It was all rather bizarre. But I am now booked for 14 more sessions before xmas. I need to double check I now need to check I am really on a ketogenic diet. 

Good fats, half term and Halloween

Boys at a castle in mid wales (dolforwyn)

Boys at a castle in mid wales (dolforwyn)

I know I need to eat more good fats. My weight has steadily gone down. I have lost all fat on my bottom. This is incredibly uncomfortable. Sitting in the bath on two bones is pretty sore and yesterday I drove back from my Mum and Dads, from mid Wales with the 3 boys. We had been there for some of half term. 


This took about 4 hours and my bottom by the time I got home was very uncomfortable. I spent the last hour trying to shift into different sitting positions to lessen the weight on these now exposed bones. Ella came home for the day to help me unpack, to feed me up and generally look after me. I was away for only 3 days, Rupert has been in Australia for work for 10 days. At home I have all my supplies and ingredients around me and can control what I eat, my juices and my supplements. Being away took me away from what has been quite a sheltered few months, and I was very tired. I used to be so full of energy so I was rather sad to feel so easily wiped out. Ella monitors me mercilessly. She will call and quiz me on my state of mind, my diet, supplements and sleep patterns. She could tell I was a bit low and that made her low, and that thenmade me low as I don't want her happiness to be reliant on mine. But she took charge and got a train back from London so that as I arrived at midnight she could empty the car and get me to bed immediately, then make me breakfast when I woke up, prepare me a bath and generally mother me. I am now in my local coffee shop typing while she is making me a batch of sugar free flapjacks and homemade muesli for the week. We have been thinking of ways I can up my fat intake. I have just tried dissolving a tablespoon of coconut oil in hot water which I then drank. That was not too bad at all - so I will continue with this as it seems a pretty direct way of ingesting fat. I should really cook more in coconut oil but with some ingredients I find it ruins the taste. 

This years more basic attempts

This years more basic attempts

Last years Halloween masterpieces

Last years Halloween masterpieces

It is halloween today and we have some pumpkin carving I need to stop typing and get back home to join in. Last year we used some great american carving templates and achieved some pretty impressive masterpieces. This year I left pumpkin buying to too late and the only ones we could find are too small for the templates so we will return to our normal more basic attempts.

 

 

 

 

 

 

 

 

The boys (Tom and Will) are Walking Dead fans and I apparently look just like Carol (whoever she is) - so they have forced me to dress up like her and I am supposed to open the door to trick or treaters and say “Just look at the flowers”. Walking Dead fans should apparently know exactly what that means. 

My last of this group of 5 vaccines happens on 13th November (which is a Friday), but I am using reverse psychology - and assume this to be significant. If all is well I will then return only in 3 months. My oncologist here has seen me recently and does not want to see me until after christmas - so as long as I stay feeling fit (and put on a bit of weight) I am feeling hopeful. My next big medical intervention will be the removal of my ovaries. I have yet to see the consultant about this but have an appointment. I am trying to work out if there is any good reason why I would not do this. At this point I rely on the horrible monthly injections in my stomach (xeloda). I feel terrible for a few days after these and they are just another medical appointment to remind me. Having my ovaries out I understand is more reliable and I need to be post menopausal for the current hormone pill I am taking (letrozole). I understand the operation can make you feel as if you have been kicked in the diaphram by a horse. It is a day case, and key hole surgery, but they blow up your stomach with gas and this is what can be very uncomfortable afterwards. I also don't like the idea of being pumped with anaesthetic and then pain relief drugs. This will give my body a shock when it is in the middle of healing. But then I cannot live on xeloda - I think I could only ever take it for 2 years anyway - so maybe better to get this done while I am healthy. 



Jackie Collins, Erin Brokovitch and Parasite Cleanses

I did something today which caught me unawares, but helps illustrate my state of mind at the moment. We are at that annoying time of the year. It is not summer and it is not winter. Some days are nippy and wet and others warm and muggy, but cold in the morning so getting dressed is a complicated affair. Travelling into work from Brighton I have to get a train to London Bridge and then walk a good 20 minutes across Tower Bridge to my office. The change in weather from getting up relatively early, to reaching my office can be like traversing 4 seasons in one stretch on some days. If I am not equipped for all eventualities I can be either over dressed, under dressed, whipped by the wind and rain with no protection at all or sweaty heaving around an unnecessary rain coat and umbrella. My drawers at home still have predominantly summer clothes but I have to seek out warmer items when the temperature drops. Today I was cursing my trouser drawer which is bulging and yet I can’t find hardly anything to wear. Not because of the vagaries of the weather (although this does feature) but because I have shrunk and my trousers, winter and summer, all fall off me and I look scrappy and disheveled if I wear them.  They simply hang off. In the summer I did not wear trousers much so it has been as the weather has begun changing that my trouser problem has felt more acute. Ella found a couple of old pairs of her trousers so I do now have a pair to wear. But this leaves all my existing trousers taking up lots of room with almost no prospect of being worn. Yet. And that was my strange moment. I was musing as I stared at these useless garments. I should just throw them all away. Since being diagnosed there has been quite a bit of clearing out. It is all stuff and what good will it do you if you are not around? What good does it do you now? And I am a person with a lot of stuff. But today my first thought was, just throw them away. And then I hesitated. Would I ever need them? To need them I would have to have put on some weight. To have put on some weight would require time. To put on that amount of weight would probably need quite a bit of time. Dilemma. Do I put them in the charity bag? Might I need them again? That is when I realised I had subconsciously thought about a time in the mid term future when I would still be around. I actually had a thought about me in the future without any ifs or buts, my musing was not about if I would be around but if I would put on the weight I have lost in any time that would justify keeping the trousers. 

I

I

This moment reflects a slow but solid change in how I am experiencing my cancer and what I am thinking about it and its chances of it curtailing my future. I have charted my progression from simple acceptance of chemotherapy as the mainstay treatment for me now and in the future to the seismic changes I have made to almost every part of my life (at least how I look after my self) and growing faith in an approach that sees cancer as something that can be healed. I realised today that for a while I have had parallel emotions, the over riding conviction that I can influence the quality and length of my life, with a shadow that pokes its head and rudely disturbs me at vulnerable times, in waiting rooms waiting for results or when I am tired. This shadow is the Golom that whispers ‘its all rubbish, give in, you know what will happen in the end you are just deluding yourself and possibly everyone else’.  So lurch from a unshakeable belief that I can and will beat it (that is what I felt for most of last week) to this to crippling fear, usually precipitated by a twinge in my side, which does happen or a story in the paper. Jackie Collins is the most recent such story.  I read in the Sunday papers she has died from breast cancer. She did not tell her family she was diagnosed with stage 4, seven years ago. I was rather impressed - what a lot of noise I have made! I was also quite impressed she lasted 7 years. That would be good. But she was 70. She had 26 years on me before this diagnosis. I am sure at the time she felt cheated of her old age. Oh to get to 70. 

But for the most part I am positive and these moments of fear do not last long. When they visit me I read and re read stories of survivors and books by practitioners who believe we can heal and that cancer is not a disease but a symptom.  Why would our bodies create something to kill us? Our bodies have been carefully constructed to live. In order to address the cancer I have to address the cause, which is what I have been doing, and help my body wrestle back control. I have probably said this before but I will say it again - imagine if over the past 50 years the medical establishment and pharmaceutical colleagues have, with the best intentions, been using an approach to tackling cancer which destroys the very part of us which we need to fight it, our immune system. The implications are huge. 

The more I read and the more I learn of advances in immunotherapies and other alternative approaches, the more this possibility seems real.  There are a good number of studies which capture the very poor performance of chemotherapy as a means of extending life. There are a good many studies which expose the death and disabilities which are so often the consequence of it. And yet somehow it remains the mainstay treatment and culturally we have been so accepting we are relieved when we hear a loved one, newly diagnosed, has begun treatment. This is exactly what I did first time. I chose to have chemotherapy as I felt this was ‘belts and braces’  as my oncologist called it - everything I could do to prevent its return. No mother could do less but take whatever measures necessary to live. It is inconceivable to most of us us that not having chemotherapy might in fact give us a better quality and prolonged life. But that is what some studies suggest. Why then is it that for so many of us, chemotherapy feels the only path we can take. 

I have been imagining the script of a future blockbuster. Set sometime in the future it would be in the genre of an expose of the tobacco industry or Julia Roberts playing Erin Brokovitch - charting the case against chemotherapy.

This blockbuster would have scenes with a roving camera capturing company directors called into emergency meetings following the publication two new studies - yet another concluding that, bar a couple of relatively rare cancers, additional survival among patients who have chemotherapy is almost nothing above that of those who do not have chemotherapy. The other presents data comparing quality of life among those on chemotherapy and those not on it. The results for those on chemotherapy are shocking, the side effects and related medication and hospitalisation following complications contrast starkly with those on alternative treatments or no specific medical treatment. (This evidence actually already exists).  The experience many years before within the tobacco industry overshadows the thoughts of all present. They must be careful that there are no leaks as they begin to consider the implications. What would happen to their business model if this evidence became more mainstream and patients started voting with their feet? What would happen if the families of patients who die from side effects start asking questions?

The parallel story in this blockbuster would be that of the protagonist, a handsome relatively junior oncologist who gets to a point where he (or she) can no longer ethically prescribe chemotherapy but has nothing else up his sleeve. Could he really suggest dietary changes? Parasite blitzes? Strategies to destress? Some basic food based supplements (tumeric, fish oils), some vitamin and mineral supplementation and some low cost old drugs (aspirin, low dose naltroxate, metformin). Then would he be an oncologist? 

The end of the film would be set at some point in the future when these new targeted therapies and successful immuno therapies are widely available and cancer is more like HIV is today.  A chronic disease which can be kept under control in most cases. The period we are living in now would be the last decade of ignorance. Those of us, like the protagonist oncologist in the film, joining the growing global community, connected now by the internet, sharing stories of survival and strategies to heal which do not involve chemotherapy. Picture an underground network sharing healing strategies, working to expose the truth against the odds. Big pharma and their networks stretching through the boards of big cancer charities and health oversight committees, with vested interests - the last thing any of them want to see would be any revelation that might undermine the golden goose of chemotherapy until they have something else up their sleeve to replace it with. So they undermine those practitioners who dare challenge the status quo. Only those drugs and approaches which have undergone rigorous randomised controlled trials can ever be prescribed, anything else ‘has not enough research evidence to support its use’. And so treatments of no commercial value cannot and do not attract the significant investment needed for those special trials. The cost of the trials become a barrier to progress - only those therapies that will make someone lots of money having any hope of getting through this obstacle course. 

The protagonist at last is proved right and the community of survivors who took their care into their own hands and rejected convention treatment finally win out. A cultural shift occurs and what was once part of the fabric of the health system becomes a horror story from the bad old days. Children will say ‘when my grandmother was alive she had medicine which made all her hair fall out’. 

It would be gripping! 

We need more investment in alternative approaches, comparing them fairly to standard approaches today. I honestly could not say that I would never have chemotherapy again. I do not want to. Were I able to join trials that tested new targeted approaches which did not destroy my immune system if my cancer progresses then I would. But for me I have a ladder of treatments ahead which are mainly chemotherapies and hormone if I follow the normal path of someone with advanced cancer. I still believe I am not eligible to go on most trials until I have exhausted known treatments (most chemotherapies and homone treatments)Really? 

What is the practical alternative in this period in history where scientific advancements in how cancer works is revealing all sorts of possible approaches to keep it in check, but with these still largely unavailable to oncologists they have mainly chemotherapy, surgery and radiation as their approaches. Healing is imprecise. There is no one pill or drug you caninject. You rely on compliance of the patient to stick to a range of strategies to support the healing process. Not something realistically I can see oncologists around the world ever investing in. It would be much easier to by pass the long intense time consuming healing strategies and give patients a clever drug to outsmart the cancer. Such a drug would be ideal - but it does not exist yet. So in the meantime what do we advanced cancer patients do? We learn not to be afraid. To see cancer as cells that need some attention and a body that needs some repairing. We explore other approaches to healing that those who have survived have implemented and we take charge and simply so no. No I am not going to die. Will to live is the ninth strategy outlined in one of my favourite books ‘Radical Remissions’.  If our brains can think we are on an amazing new treatment and respond accordingly even if we are in fact on the placebo then why can't the opposite be true. If doctors more or less tell you you are going to die or there is no cure then might you not simply live out their prediction. So just say no. I am not going to die thank you very much. And that is pretty much the most important first step. 

Apart from creating a story line for a future blockbuster I have been getting used to life without Ella. We took her and her bags by train to her University accommodation in London two weeks ago almost. I have seen her twice since then which is probably cheating, but we miss each other. She wrote a long list of instructions for her brothers and Tom has now taken over checking if I am up to date with my supplements and green tea, apricot kernels etc and they all pay attention to my diet in case I am caught nibbling on something I should really avoid. I think it makes them feel they are actively involved in making sure I am well. They are actively involved in making sure I am well.

I have also started a parasite cleanse and am exploring how I can increase my juicing, which is time consuming and as a result I do not have enough of them a day. I have been talking to the Juice Revolution the juicing business that works out of the front of Brighton Station.  www.jointhejuicerevolution.today. They are passionate about juicing and we are cooking up a plan to try out a way to help me get the vegetables I need, in the right mix, packaged up to make the process easier. I will write more about both next time.

PS Check out this 


        The shameful past

The history of the discovery of the cigarette–lung cancer link: evidentiary traditions, corporate denial, global toll

        Robert N Proctor

        Correspondence to
Dr Robert N Proctor, History Department, Stanford University, Stanford, California 94305, USA; rproctor@stanford.edu

        Received 5 July 2011

        Accepted 22 November 2011

Abstract

Lung cancer was once a very rare disease, so rare that doctors took special notice when confronted with a case, thinking it a once-in-a-lifetime oddity. Mechanisation and mass marketing towards the end of the 19th century popularised the cigarette habit, however, causing a global lung cancer epidemic. Cigarettes were recognised as the cause of the epidemic in the 1940s and 1950s, with the confluence of studies from epidemiology, animal experiments, cellular pathology and chemical analytics. Cigarette manufacturers disputed this evidence, as part of an orchestrated conspiracy to salvage cigarette sales. Propagandising the public proved successful, judging from secret tobacco industry measurements of the impact of denialist propaganda. As late as 1960 only one-third of all US doctors believed that the case against cigarettes had been established. The cigarette is the deadliest artefact in the history of human civilisation. Cigarettes cause about 1 lung cancer death per 3 or 4 million smoked, which explains why the scale of the epidemic is so large today. Cigarettes cause about 1.5 million deaths from lung cancer per year, a number that will rise to nearly 2 million per year by the 2020s or 2030s, even if consumption rates decline in the interim. Part of the ease of cigarette manufacturing stems from the ubiquity of high-speed cigarette making machines, which crank out 20 000 cigarettes per min. Cigarette makers make about a penny in profit for every cigarette sold, which means that the value of a life to a cigarette maker is about US$10 000.

Tob Control 2012;21:87-91 doi:10.1136/tobaccocontrol-2011-050338

Bucket list, memories and treatment up date.

It has been too long since I last wrote my blog. We basically spent from the last week of July to the end of August on holiday, either in Mallorca or France. I was determined to be well enough for us to disappear as a family and just spend some time together, away from normal life and to give me time to really repair after the chemotherapy and shock. There is the matter of memories also. How many summer holidays might we all enjoy - so we wanted to take as long as we could away. It is now the 15th September, I have since been to Germany, the kids are back at school and Ella leaves for University on Saturday.  I did attempt a blog in early August, but I did not post it then. I will do so now and pick up again after the short amount I wrote then. 

August 1st Mallorca

A very lovely friend has lent us her apartment in Mallorca so we are here for a week. I have been so excited to have some uninterrupted time as a family.  Now we are here, together I feel deeply sad at times. Everyday that is gone fills me with trepidation. Will this be possible again? I am well, the kids are relaxed and my illness dominates only a little, when it comes to clearing up or making decisions about what to do. When there is disagreement I am allowed the c-card. This gives me decision making authority. What I say goes. Everyday that passes eats into my time. Tick tock. Tick tock. I fear the end of the summer. Sun and warmth makes simply being, easier. 

My bed looks over a small bay and I can hear the waves swishing back and forth. Last night I saw a cruise ship pass far in the distance. An enormous beast, lit up like a Christmas tree. I started to think about the merits of a cruise. I have never been on one and never particularly wanted to. But I am curious. I like the idea of waking up in the morning to find myself gently transported to another beautiful or historic location. I would never have considered going on a cruise before but now that I may not have the luxury of time to try things out at a leisurely pace I am found myself wondering if a cruise would be on my list of things to do before I die if the timeframe is limited. If I lived a long life I would probably let curiosity get the better of me. But if my life is curtailed would this be anywhere near the top of things to fit in. I have actively avoided the ‘bucket list’. But everyday something comes into my mind, a book I want to read,  a place I want to visit, I play I want to see and I feel a heaviness in my chest, something pressing down and I catch my breath. How much do I want to read X book? Or go to X place? Which order would I place these would like to dos? Priority or would be good. How will I fit them all in? Time is racing by too fast. It is already 6 months since I was diagnosed. I may just have to give in and be more deliberate about a bucket list, at least for a few of the things I really do want to fit in. Included in this would be a trip in a camper van. I want to read War and Peace again. When I finished it the first time I felt utterly lost. For days I walked around in mourning. I met an old woman around that time who told me that the best thing about getting old was that your memory went and you could read books you love for a second time as if for the first time. Ever since then I knew I would read it again later in life and that was some consolation. A few weeks ago I bought War and Peace again. This time as an audio book as I had some free credits on Audible. I admit to skipping large sections of the War chapters when reading it first time. I wonder how easy it will be to do this on the audio version, or maybe if I listen to it it will be easier to digest these parts of this huge literary work. 

15th September 2015 Brighton

I am perservering with War and Peace on audio. I am quite a few chapters in and remain completely confused as to who is who and what in fact is going on much of the time - but I remember it was slow to get into last time so I will keep at it until I find that original magic which I have most definitely forgotten. The voice of the man reading the book is slightly off putting as none of the characters seem in the least attractive or likeable at this point and I wonder how much this has to do with the image the reader communicates as he puts on different voices for each character. How he manages to jump from the voice of an aged Princess to that of a young officer in the space of a couple of lines I don’t know. I appreciate the skill even if I do not like the Princess sounding like Dame Edna. 

We spent such a lovely time together in France. I slept and tried to build up my fitness. I have lost quite a bit of weight, not unhealthily but it doesn't give me much of a buffer if I need strength. I began to run. All the kids went running almost daily and encouraged me to do the same (I had said I needed encouragement). I am not a natural runner. My body is not used to running as an exercise and the hormone pills I am on make my body feel like that of an old lady at times, so getting myself up the hill near where we were staying, often in some heat was a huge achievement for me. I began running every other day and was pretty proud of myself by the end as I could do the 3 mile route without stopping. Dr Nesslehaut in Germany (colleague of Dr Martin), when I asked him what else I could be doing to help myself responded, said that I should be doing regular energetic exercise to get my heart pumping more oxygen round my body. Since getting home I have only been running once. I find it so hard to fit it in - days are just not long enough. But I have some friends and neighbours ready to join me and make it enjoyable and fixed part of my diary. 

My hair has grown through, nice and thick, and the curls are beginning to show. Last time I had the most horrible curly haired stage which I hated intensely. I am not sure what to do this time - do I gut it out and live through it or keep it short. I thought I would wait and see how bad it gets. At one point I feared it would all come through grey but it is brown and the sun as softened the colour - only the odd white hair in sight. 

On 2nd September (the day of my 20th wedding anniversary) I went back to Germany, this time with Ella. We arrived on the Wednesday and I had treatment on Thursday, Friday and Saturday morning before coming home that evening. This was my third injection (out of an initial 5 monthly injections). On the Thursday they take my blood to test before they give me the injection on the Friday. I felt well and my instinct was that the bloods must have improved somewhat since last time as I felt so well and we have been so strict with my supporting healing strategies. Despite this the evening before the results is always a bit of a mental minefield. My main interest was my circulating cancer cell reading which should be below 5 and was 9.3 before the first injection. Before the second injection it was 6.6. This time I wanted it below 5 but needed to prepare myself for anything. Going up? I somehow did not think this would happen given how I felt. What if it had stayed the same or reduced by a couple of points only to say 6.4 or 6.3. This would have been a blow. The other scenario I considered was it reducing to below 5, but only just - say 4.9. That would have been tricky - within normal range but only just. When I arrived on the Friday morning Dr Martin was at the reception desk, my heart was beating a little fast. I smiled and we chatted in a friendly way, I am wondering if he has seen my results, can I read anything in his face. He did not keep me waiting and said in his relatively thick German accent ‘ Today I am happy. Do you want to know why I am happy?’. He was holding some papers that looked very like some blood results. And then another patient came to the counter to ask a question. Time slowed down. Ella and I were on tenterhooks. When he returned to face us he had lost his train of thought and was about to start a new conversation. I asked him ‘Why are happy today?’. ‘Ah yes!’ he said ‘Because your bloods are very good this morning. You are what we can now call - a responder!’.  

My circulating cancer cells were down to 4.3 and other bloods he looks at to check progress were going in the right direction. I still have a breast cancer marker that is above normal but lower than it was. And I know 4.3 could be lower still. But I cannot be too greedy - this was a good set of results given I had at that point only had 2 injections. What I cannot say is do these results reflect this treatment alone? Do they reflect hormone treatment I am on? My diet? My supplements? other parts of my survival plan? I will never know but clearly some combination is working and the science behind dendritic cell is to my mind compelling. I go again on 7th October for my 4th injection and then on 11th November for my fifth. Assuming all is well I then go down to every 3 months and eventually every 6 months - if I get that far with no progression that would be good news. Each visit now costs about €7500 so I am working through the funds everyone has so generously given and raised. We continue to fundraise, slightly lower key at the moment, but I am so grateful I have been able to have this treatment. I feel confident with Dr Martin. 

September is always a time of change. New schools, new classes and timetables. There is a familiarity and life feels so normal. The children are happy. I am determined that they do not grow up with a memory of having a mother who was ill but memories of normal family life, with no fear. I do feel fear sometimes. The normality makes me afraid. It is as if it is laughing at me. So normal but so not. Then I pull myself together. I am forging a path to survival. I would like to be writing in many years hence and be proof that it all worked out but right now, I am going in the right direction. The mind can create so many different scenarios of what next. For now, I will take the sensible plan for all eventualities route while embracing the normality.

I am slowly progressing on my plan to organise the family photos sooner rather than later. I have pulled out my old diaries. I have written one since the age of 11. I have never read them. Too embarrassed. But now I am ready, ready to accept whoever I was. I want to write up my life for my children in someway as when I go, even if in many years hence, all of those details that made me me, will be lost. Pieces will exist with loved ones but the jigsaw can only be put together by me. So I want to write it down. It feels therapeutic. I am getting my things in order and that includes my thoughts and my collection of memories and memorabilia from my 44 years. 

My very first diary was a little white 1982 diary with a page per day. I was in my second year of my Catholic Boarding school and my parents at the time lived in Saudi Arabia. I had been desperately homesick during my first year, and continued to be so for subsequent years. I worried incessantly about almost anything, mainly school work, friendships, lost needlework and occasionally about far more worldly things such as nuclear holocaust (the fear began after a showing of the film ‘When the Wind Blows’.) My school reports describe a girl who ‘if only she was less anxious’ or ‘worries too much’. 

At 11 my diary has little detail. Immediate emotion. Facts such as it was so and so’s birthday. Or ‘Lulu went to hospital. She hit her head while swinging round’ Monday 25th January 1982. It makes frequent reference to homework and the amount of work I am doing or have to do.

Scattered throughout the 1982 diaries are indications of my academic potential. I was clearly not an obvious brain unlike some of the girls in my class but I most definitely did the best I could with my potential and compensated for natural brilliance with focus, determination and hard work.

Friendships dominate parts of the diary.  My best friend Sophie (who remains my oldest best friend) and I met on our first day at school. In the early years she often dumped me to be best friends with someone else. Even today I remember those painful friendship trysts which dominate parts of my 11 year old diary. Were she not my goldenest friend now it would perhaps not be so funny to look back at this pre pubescent angst. I note, it was never I who dumped Sophie but always the other way round. I am and remain in most things fiercely loyal. (thinly veiled insult to Sophie). I document how one day Sophie tells me she does not want to hang around with me but I can still be her friend. 

What did we watch and listen to in 1982? That year I saw Gone with the Wind, The Return of the Pink Panther and Jesus of Nazareth.  On April 19th I note that I bought 3 tapes Bow Wow Wow, Bucks Fizz and Ultravox. 

On religion the Diary notes nothing particular about my beliefs only of my attendance at Mass frequently. In those days we went to school on a Thursday and a Sunday. On Palm Sunday 1982 (4th April) Had Mass. I gave out the Palms. I also made us all a cross out of them. On that day I also tried to explain to Anthony about Heaven (Anthony is my younger brother) I do not elaborate and am not sure what I could possibly have said to explain it, but can imagine. The most significant religious event of that year was Pope John Paul’s visit to the UK. The school (a Convent) was in the utmost excitement and we were given celebratory tins of travel sweets with a picture of the Pope on the lid. My mother took us children from mid Wales where we were staying with my Grandparents, by Coach to Cardiff to see him in person and celebrate mass on June 2nd 1982. I remember the painfully early start. ‘We saw the Pope at Cardiff. We got up at 1.00am. I went to sleep in the middle of the mass. I took pictures.’ 

As I get older I write in much more detail, so my diaries in my late teens are full of pages of scribble. I reckon it will take me a good while to work through these but I am so pleased to have the opportunity to reflect on my life as I saw it then. I had always packed the diaries away thinking I would look at them as an old lady - but something like this makes you ask, why wait? 

I continue with my fierce programme to stay alive which outside of dendritic cell and hormone treatment involves my diet, which I have described and supplements, some acupuncture, some moxa, some exercise and not enough yoga and meditationn at the moment. I booked a two hour session with Chris Woolams who runs the Cancer Active website, which is a great resource www.canceractive.com. He will buddy you for a fee and I wanted to share what my regime was and see if he thought there was anything he felt I was missing. Since I last wrote I have added a few things to what I take. I will list them here and in future blogs will write a bit more about some of them. I now drink bicarbonate of soda in the morning, mixed with lemon to alkalise my body. I have started metformin (an old drug used by diabetics) to help regulate glucose and reduce inflamation. I take a 75mg aspirin daily, a vitamin D 5000 mixed with vit K and cimetidine (an old antihistamine which has side effects which are anti cancer - it is not registered for cancer use so of course you cannot get your doctor in the UK to prescribe it - but I have found a way to acquire it). I have also started modified citrus pectin following my discussion with Chris W. I continue with Low Does Naltroxate, apricot kernels and pancreatic enzymes and later this week will begin a course called Parafree - to eliminate parasites from my body. There is a good deal of work to indicate that we all carry a large parasite load and that this can create the conditions in the gut etc that enable cancer to take hold. I have travelled all over the place over recent years as I work in international development. The last 5 years have seen me in Sierra Leone, Nigeria, Zimbabwe, Kenya, Ghana, Malawi, Tanzania and Ethiopia at least. So I would not be surprised if my parasite load were higher than normal - I reckon it won’t do any harm blitzing any remaining parasites. I already take super artemisinin (wormwood). All of these deserve more time and explanation and I will return to them. It is hard to fit all the supplements in as some cannot be mixed with others. 

I need to design a pill box that can cope with the number and complexity of timetable necessary to stick to the mix I am on. I wonder if one exists that suits my needs. 

My next hurdle, or one of them at least, is whether to have my ovaries surgically removed. I continue to have monthly injections to push me into chemically induced menopause as part of my hormone treatment, but the injections are painful and the most recent one left me with a fist sized dark purple bruise and some swelling and lots of tenderness on my abdomen. Either I continue to have these each month of I just have my ovaries removed and that will do the job.

 

 

 

 

 

 

Dendritic cell round two, examination of the larynx and spinal chords

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It is now almost a week since my return from my second visit to Gottingen for my second dendritic cell injection. I travelled with a friend Paula, who helped keep the show on the road, made sure I had my morning juice and supplements and generally took control in the post injection window when I lie on my bed with a fever for a good few hours. 

This time I also took William, my 14 year old. He is the only one of my children to learn German and this was a good experience for him. More importantly I am trying to carve out special time with each of the children to give them all one on one Mum time as I consciously lay down memories.  This was a good opportunity for William time. 

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I was also from a family of four and I remember the only time I really ever got time alone with my Mum was in the car when she was ferrying me somewhere, to a doctors appointment or the dentist. I had traintracks on my top teeth for 6 months of my life and that meant a few Mum trips to the orthodontist.  My most concentrated Mum time ever happened at the age of 7 or 8.  We were living in Saudi Arabia and I suffered terrible ear problems. My ear drum would burst all the time leaving gunk all over my hair and pillow in the mornings until I was flown to Cyprus for an operation to remove my adenoids. This was the nearest military hospital (my father was a Royal Engineer in the army for much of his career). The joy of the trip was that I went alone with my mother. As I could not fly soon after the operation we had 2 full weeks together. Mum hired the cheapest vehicle she could which turned out to be a small minibus with a missing window pane and we would do day trips, driving around the hairpin beds with the plastic sheeting covering the missing pane flapping frantically as we explored the island.

For this latest trip to Germany we landed in Hamburg and took a taxi to the central station to catch our train to Gottingen. On the way back we discovered the cheaper rail route from the airport to the station which is pretty straightforward (unless you have a suitcase as large as I did the first time I visited). This time we stayed in Hotel Central on what looked like the quiet Judenstrasse. No lift, and our room was on the top floor. In the height of summer this meant that our room could get hot so we had to leave the windows wide open. Which let in all the noise. At night the quiet Judenstrasse was anything but quiet. The sleepy looking bar opposite was clearly a popular night spot, music, singing, laughing and general hilarity way into the early hours. Then just as that settled down the trucks began. Perhaps it was the acoustics of the street but it sounded like a constant stream of tanks rolling up and down the road through to getting up time. We liked the hotel though, they were friendly and helpful and it was really well located, close to Dr Martin’s clinic and to the town centre. 

William walked around with a go pro filming a vlog (video log) which we will try and link to (we have a way to go in our vlogging technique). I went to the clinic 3 times, on the Thursday, Friday and Saturday morning. On the Thursday and Friday I had the infusions they use to support the Dendritic Cell Therapy (including Zometa and Newcastle Disease Virus) plus hyperthermia treatment each morning. On the Friday at about 12.30 I had my second injection. This time there were 64 million dendritic cells. Followed by the interferon to stimulate a fever (which peaked at 39.2 degrees and lasted around 8 hours in total). Dr Martin and his partners use a blood test which examines the circulating tumour load as part of their assessment of DC therapy. I have since read that this is in fact considered a more effective prognostic test compared with imaging. Those with circulating tumour load of less than 5 do better than above 5, very simply and the lower the better. My load last time I came in June was 9.3, which is pretty high I think. This time it had reduced to 6.6. Still above 5 but this is a clear decline. So Dr Martin, using this and  my other blood results and my well being, said this was better than he would have expected. This news buoyed  me and made me feel very positive. I am home now, feeling fit and well and ready for a lovely summer with my family. 

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When I got home I had an appointment with an ENT specialist to investigate something the PET scan had shown up in the space behind my nose. This involved having a very long thin camera being stuck down my nostrils. As they were just looking at the area directly behind the nose they did not need to use the full length of this piece of equipment. The official name of this procedure was an endoscopic examination of the larynx and pharynx. As the back of the throat and nose are are covered with rapidly dividing cells and the PET scan picks these up so there are frequently followup investigations from PET scans where other anomalies are identified which are often nothing but need follow up. It was nothing in my case. I had not felt worried, until perhaps a minute or two before in the waiting room, but that waiting room feeling is inescapable. The procedure was only a little uncomfortable and it was all over pretty soon. 

Earlier this week I caught some of an interview with Melanie Reid, the journalist who writes a weekly column in the Times ‘Spinal Column’. (Listen to the interview on iPlayer). I have occasionally read this column. Her spine was crushed falling from a horse and the column charts, among other things, the physical and emotional challenges of everyday life and the impact of her accident on friends and family. I was fascinated to hear her. Her voice is strong and were you to hear her talking about some other subject you would have no idea what she has to manage to simply survive everyday. The frustrations and constant reliance on others. 

Her words had a significance I would never in my previous life have anticipated. The accident was 4.5 years ago and she admits to still not being reconciled to her fate, not accepting. With that I differ, even though it has been only a short time really since my diagnosis of advanced cancer I really have had 5 years to at least conceive that my life may not end as an old lady eating scones and cream with my best friend. Even though I had a good ‘prognosis’ (whatever that is) when I was first treated the possibility that I could be one of those for whom cancer came back was always in the back of my mind. I remember the first time I was diagnosed, early on in the process when I was unclear of how serious it was, I found myself with tears in my eyes as I watched the pretty banal and everyday scene of an old woman sitting on a train, looking elegant and reading her paper, maybe on a trip to visit her grandchildren, and all I could think was ‘please let me grow old, please let me grow old’. Not something I would normally have wished for as the creases of age began to show on my then 40 year old face. 

Over the years, after that diagnosis, these thoughts subsided. They are back. My earlier blog explored sudden death vs diagnosis of terminal cancer with time to spare. Listening to Melanie made me think about the loss of control and independence that would come with a spinal injury resulting in almost total paralysis. This strong woman spoke of the friends who provided her an incredible support network. She also spoke of the impact on her children and how she was determined that her disability would not become theirs. She has a son who is studying in New Zealand, and she made it clear that she wanted them to live their lives and not have to stay close to look after her in any way. Then her voice broke and what she said resonated so powerfully, not only I am sure with me but with any mother who finds herself in a similar situation. She spoke to her son often and wrote to him but did not share her downs with him. She wanted him to remember her as the mother ‘who can do things’.  She chokes slightly on these words. 

The impact of my diagnosis on my children has helped define my response. I was the mother who managed everything, I am the mother who manages everything as many mothers and fathers do everyday, from knowing where their favourite trousers are, signing the various permission slips that they pile home with, coordinating logistics to get them to and from clubs or friends houses and on and on. I work and am generally a busy and can do sort of mother. And that is what I want them to remember me as (and to continue to experience me as). I was actually only not very well during the chemotherapy as that made me weak, the cancer so far has made me only a bit tired and given me dried skin and some heart burn (before diagnosis). Now that I am recovering from that chemo and eating and sleeping well and managing stress etc etc I am pretty fit and well. If you didn't know it is hard to believe there is anything wrong with me at all. So I can get firmly back on my pedestal of Mum who can do things. 

Emotionally I wonder perhaps if in my determination to make sure the children’s lives and thoughts are not dominated by what is wrong with their mother, I do not allow them to see me emotional about the cancer ever (except Ella). How hard it is as a mother to see your child emotionally struggle knowing there is little you can do about it but love them. Flip this around and imagine what it must do to a child to see their mother emotionally struggle and being unable to make it better. The main result is a household that remains happy and almost normal (except that they are all very good to me and clear up after meals making me sit down, monitoring my juice taking and being sensitive if I look as if I need a rest). I hope the day never comes,  but perhaps one day I will be less mobile and more physically dependent and not the mother that can to things. We have a toilet downstairs which has a shower that has never worked since we moved in. We had a plummer around as my relatively new water filter was not working and while she was there (yes! amazing a female plummer and brilliant at that) we asked her to look at the shower to see what it would take to mend it. This involved discussions about the shower tray which at the moment is deep and tricky to get in and out of (and is currently home to lots of redundant shoes). We agreed on a solution which she very diplomatically referred to as ‘future proofing’ which would make access to the shower easy for someone who finds it difficult to walk. Again, I intend to defy the odds but taking sensible precautions is the only sensible thing to do. It still offers a window to the horror or what could be. A horror which I do not dwell on and intend to never experience but know that it is the lot of many many advanced cancer patients at one stage in their journey. 

I am for now grateful for my health today. That I can get myself out of bed, make my own cup of tea (green of course), go to the toilet alone, walk to the shops, catch a train, walk the dogs, go on holiday. I am not confined as Melanie is to the reality of the everyday effort and dependance to simply eat and generally survive. I know that if that were me, I would work on a different type of survival strategy as I am sure Melanie does, to make the very best of such a situation - but goodness it must be hard. 

The other type of condition I have thought about is alzheimers. Early onset alzheimers. I am yet to see ‘Still Alice’ but have heard about it and have also recently spoken to someone about a friend of theirs who was diagnosed at 54 after a year of friends thinking she was just becoming a bit flaky until she started forgetting things like paying the rent. Knowing you are losing your mind, your memories, yourself. Is that like death? For the family it has the same effect but worse as there is still the body to care for. I do not morbidly dwell on these things but they have such a different significance for me. I cannot help but consider my lot with other everyday tragedies which affect people and their loved ones so profoundly and from this reinforce to myself what is positive about what I have.

We leave for a week in Mallorca on Monday and later to France. Spoiling time together, hopefully with the sun. Perfect for immune boosting activity. I return to Germany early September and between then and now have no significant medical appointments (except my monthly injection to keep me in chemically induced menopause). 

 

Quack cures or genuine alternative therapies and scan results

I think I will award myself an A minus this time. The cancer is still there (but not obviously worse or better as far as can be read from the scan) but my liver bloods were all really good and I am very well. As far as I am concerned now this is a pretty good outcome. The  more I become convinced of the metabolic origins of cancer the less afraid of it I feel. That said I definitely felt very afraid as I waited for the results. It was impossible to avoid that stab of panic that rises occasionally with the many what ifs that flood your mind at times like this. My younger sister, Cecilia, was with me and tried valiantly to distract me as we waited. I had had my bloods taken earlier that day and I saw the envelope with the results being delivered. So the delay before I was called in was laden with meaning. Clearly they (the breast care nurse is always with the oncologist during appointments) were discussing how they would communicate the results to me. Then they opened the door, and my heart beat a little faster as I grabbed my bag and began to stand ready make my way in, when they called another woman, with very short hair under a hat, into the office. 

We have a lovely summer planned as a family and my immediate fear was that this would not be able to happen if the results were bad and cancer would again dominate. When I was called in eventually the oncologist just pushed the blood results under my nose. I have not yet experienced good news from this oncologist so am not very sure how to read him in all situations. I would say this was an OK result. He clearly would like to see the tumours in the liver to clear but good bloods and a healthy me are good outcomes. I now do not need to see him until early September. Before then I have one more dendritic cell vaccine (I leave this Wednesday), a relaxing summer with sun and good food and longer on the hormone treatment, so lets hope by the time we reach September there will be some evidence of clearing. It is clearly very comfortable where it is. I am not sure I am technically in remission, as this I think happens only when there is certain percentage decline in tumour size, but I am stable. I am also not sure there is much difference between stable and remission. So this is all good news and I feel happy, enjoying that I feel quite well. I am savouring little moments, conversations with the children, seeing my wider family - like having a plate of my favourite food in front of me, trying to chew it slowly to make it last rather than gobble it down, which I have a habit of doing.

The PET/SCAN did show up one thing they need to investigate. The oncologist was pretty confident that it was a red herring, but it needs following up. Something showed up behind my nose. My oncologist is not only a breast cancer specialist cancers of the neck and head also and so I trust that it is almost certainly something else (infected sinuses?) - but I still have to have a camera up my nose and the inevitable sneaky worries that will surface as this is investigated. 

These results make me feel more confident that whatever I am doing it can't be doing anything too bad and I feel more bold in my belief that this is something I can keep under control, indeed heal. I have been reading more widely and there is such a large number of researchers, doctors, health practitioners and expert patients who believe that something untoward is happening in the world of cancer. 

When you first read much of this literature it is difficult not to feel that these are people obsessed, in some mad world of conspiracy theory. Big pharmaceuticals bad. Chemotherapy poison with few success credentials. Claims of therapies which are being squashed and discredited as they are being pedalled by quacks who are out for your money and have no regard for your health, if they did they would comply and support the main conventional therapies rather than put your life at risk by suggesting there may be another way. And then you keep on reading, and listening to testimonials and hearing people from all around the world who have taken a different route and survived, or at the very least extended their life with good quality - and a little worm starts burrowing away in your mind. What if there was another way? What if cancer really was fundamentally largely the result of a metabolic disorder? What does chemotherapy, radiation or some of the targeted therapies do to address this in the longer term? If you really want to live, and I really really want to live, then you open your mind to honestly anything, things a me before cancer would probably have disregarded as a bit whacko, but I am slowly converted. 

Something fishy is going on in the world of cancer. The health of our cells rely on what we put into our body and how we treat it. Surely if we have a metabolic disorder which helps prevent the immune system from playing its part and keeping cancer (that is in all of us) in check, we would need to address this if we actually wanted to survive longer term. Zapping a tumour to get an immediate reduction in size (which is what chemotherapy can do) is not on its own going to address the fundamental range of factors which contributed to the cancer growing out of control. Indeed, and rather disturbingly as I have mentioned many times, it actually impairs your immune system, which is the backbone of your own  bodies defences. 

I say something fishy is going on because of the large range of alternative therapies which are based on good science and are not only disregarded by most of the medical establishment but they are actively discredited and in many cases practitioners supporting patients with such therapies are subject to professional censure. In the USA there is a long list of cases of Doctors and other health practitioners actually being persecuted, even imprisoned for offering such alternatives. There has been a recent case rather closer to home which I am aware of but need to check if it is ok to talk about it here. 

These alternatives, when you look into them, are things like high dose vitamin C therapy and B17. Now B17 essentially comes from a range of fruits and vegetables but apricot kernels are a well known source of this. I have not found literally one piece of credible evidence that B17 supplementation is dangerous even at high doses, yet there is a long history of practitioners being persecuted for offering this and pure laetrile has been illegal in much of the USA for decades. There is a massive literature containing evidence of the beneficial impact of B17 on cancer and many many testimonials of people reporting impressive responses after using it as part of a broader approach to cancer. Apricot kernels are not exactly going to make anyone rich. They are certainly unlikely to kill you unless you eat so many you burst (as far as I can see from the research) yet there is plenty of evidence of death from chemotherapy treatment yet this is used as the mainstay treatment for cancer. At worst B17 would not do anything. The history of suppressing the evidence around this nutritional supplement is macabre. 

It is not only parts of the medical establishment who either disregard this evidence at best and at worst actively target practitioners who offer it - but big charities such as Cancer Research. When I was diagnosed this time and started my research I kept coming across some rather vitriolic anti Cancer Research material and blogs and couldn't understand why. I now do. It should be the Cancer Research of this world, who raise so much money from people who want to see their loved ones survive, who champion another view of how to treat cancer and to support the necessary research to definitively support some of these alternative treatments which will never make anyone rich. 

Despite most oncologists not offering any specific nutritional advice (except to ensure that you do not lose too much weight to put the chemo treatment at risk), I cannot believe it is that hard to agree that it is plausible that nutrition has a role to play in not only increasing susceptibility to cancer but  also as a strategy to helping increase survival. Have a look at this disgraceful advert put out by Cancer Research funded by the hard work of millions who donate in the hope for a breakthrough. I cannot work out how to add a link but have a look at the Cancer Research Facebook post on 22nd June 2015 at 20.00 hours.

I always like to refer to the book The Cancer Survivor’s Bible by Jonathan Chamberlain to sense check things I read elsewhere. His take on B17 (also known as laetrile) is that the controversy surrounding it is bizarre given this is essentially a substance found in concentrated form in apricot kernels and almonds but also a wide range of other foods and plants, mainly edible. I would suggest it is beyond bizarre and more in the realms of sinister. Ralph Moss covers the story of the suppression of research supporting the use of laetrile in his book The Cancer Industry.

I have started eating crushed apricot kernels (it is important you source them from a reliable supplier - I use Himalayan apricot kernels from creative nature ), simply as a nutritional supplement. I am crushing them and mixing them in water to swallow in one (as they are utterly disgusting and incredibly bitter). I have started on 5 a day and am working my way up to get to as close to 30 a day as I can but doses for other people with cancer can be a lot higher. It is also a supplement that does not work alone and requires Vitamin A and Zinc and enzymes (I think I have finally found the right pancreatic enzymes to support this therapy and will write about it soon when I have started to take them). I also have B17 in pill form, which if I need to be more aggressive at any point in the future I will consider starting. As it is I have quite a lot going on with dendritic cell, exercise, diet and other supplementation - I need to hold some approaches back in event I need a boost further down the line.  Again in my view, it is unlikely to do any harm and so why would I not try it in light of the many people who strongly support it’s potential as part of an anti cancer approach. 

The main therapies that stand out as those which have been tried and tested and are advocated by cancer survivors and integrative therapists include: B17; Low Dose Naltroxate (which I am also taking and cover in this blog also below); the budwig protocol (quark and flaxseed oil) - I tried this during chemo but could not stomach the mixture, I would return to this at a later date if I need a new approach and not mix with chemo when it is hard to find even normal food appetising; cannabis oil (I have researched this and again it is something I would certainly contemplate if of course it were legal as it is in California where there are oncologists who actually prescribe it); vitamin C in high doses (I am taking liquid vitamin C starting only after I had finished chemotherapy but I know people do take it in conjunction with it and I had some Vit C intravenously in Germany.) Finally  vitamin D supplementation. 

When I told my oncologist that I was researching dendritic cell therapy and I wanted to know what his views on it were and he suggested I try and see (privately) a Professor (Dalglish) who is a leader in immunotherapies and has been a supporter of dendritic cell therapy for many years. I was lucky to see Prof. Dalglish who was incredibly open minded. I had wanted his views on DC therapy but also advice on some of the other supplements I was taking or considering. He knew the team in Germany well and had visited the laboratory there (which the team showed me around also) and was positive about their work which gave me the confidence to pursue this treatment. Apart from commenting on the other measures I was taking he advised two things. 1) to get my Vitamin D tested and 2) to consider Low Dose Naltroxate

Vitamin D - why?  There is plenty of research which shows the benefits of vitamin D both in the prevention and the treatment of cancer. Recent research indicates that human daily requirements for Vit D may be up to 10 times more than what is currently recommended. There is also growing evidence that many of us are deficient in this essential vitamin. Professor Dalglish was certainly clear that Vitamin D is so intrinsic to the correct functioning of cells that patients should first and foremost correct any deficiency. There are a number of factors that have contributed to growing deficiency of Vit D including use of sun creams at all hours over the whole body and the changes to the food we eat. It is not only cancer that increases with Vit D deficiency but many studies indicate mortality from all causes is significantly higher if you are deficient. Prof Dalglish suggested I have my Vit D tested and said that he is surprised by how many people you would think would not be deficient who are. I would have put myself in that category.  My test came back and I was between deficient and normal (although according to the GP surgery I fell within normal ranges but from what I have read about what is sufficient in literature about cancer I was in fact within the deficient/normal range). I had started supplementing with liquid Vit D a good few weeks before the test and so imagine that I was well within the deficient range a few months ago - which I am sure would not have surprised Prof Dalglish who sees Vit D deficiency in so many of his patients. I continue to address this with a Vit D supplement and will spend as much time as I can in the sun (safely) over the summer. 

What I did learn as I researched this was that while some Vit D is created within the skins outer layer much of it sits on the surface of the skin and it takes about 48 hours to penetrate. ‘Being water soluble, vitamin D is broken down by soap and washed away in your power shower’. ‘Trying to get sun exposure behind glass won’t work either since the Vit-D making UVB wave length is disrupted. UVA gets through however, and that’s not good news’. pg 211 P.Day ‘Cancer Why we are still dying to know the truth’

Now Low Dose Naltroxate is another funny therapy. Funny in that there is an impressive science behind it and yet it remains elusive and certainly not considered a standard therapy. Professor Dalglish has himself examined the research behind it as well as treated patients who have taken this and he believes this is a substance which should be considered within the cancer arsenal. He suggested that I start this and offered to write me a prescription if I could not get one from elsewhere. There is a way to get this low cost drug within the UK but it is not the most straight forward route and I am at a loss as to why more is not known about this and why it is so hard to acquire it. Naltroxate is a drug which has been approved by the drug authorities but originally to help wean addicts off heroin. In 1985 however a New York City doctor (Bernard Bihari) discovered that at very low doses this drug had a very powerful stimulating effect on the immune system. 

In addition to stabilising AIDs, he found that this treatment also had a powerful, beneficial impact on many cancers including cancers such as neuroblastoma, multiple myeloma and pancreatic cancer which are normally considered incurable’ 

Interestingly, this treatment has the effect not of curing cancer but, in many cases where all other treatments have failed, of stopping it in its tracks. This is not 100% assured but seems to be a very high frequency effect. However LDN needs to be taken permanently as the cancer will start growing again when the LDN is discontinued.

It is safe, cheap and has no side effects….’

Johnathan Chamberlain pg 397 The Cancer Survivors Bible. 

I now take 4.5ml a day, every evening after 9pm. In order to acquire it I had to contact a pharmacy in Glasgow which supplies it (Dixons Pharmacy www.dicksonchemist.co.uk). They sent me some forms by email which I had to complete giving details of myself and confirming my diagnosis (a copy of a letter from my oncologist to my GP). I returned these and was then contacted by a Doctor for a private consultation by phone (this cost about £35) who advised me on how to take it and confirmed some details. He then prescribed LDN for me and I purchased this via the pharmacy. It costs me £18 for a months supply. Why on earth should it be so difficult for me to access what appears to be a low cost drug with an exciting scientific evidence base? Could it be that it is out of patent. A rather boring low cost drug that will not make anyone very rich. Cancer Research - where are you? I tracked down a book which charts the history of Low Dose Naltroxate and examines why this has not attracted more attention from the medical community. (The Promise of Low Dose Naltrexone Therapy: Potential Benefits in Cancer By Elaine A. Moore, Samantha Wilkinson)

The low cost of generic naltrexone is not favourable to the profits of drug manufacturers who might otherwise implement clinical trials for its use in conditions for which expensive drugs are already available’. pg 155 

Also check out www.lowdoesnaltroxate.og

So these are some more strands from Louise’s personal survival strategy.

Ella’s Birth - Joy and Trauma

I think it is time I talked about the other significant emotional and physical event in my past, which was full of joy, shock and pain all at once. Ella’s birth. She was 19 two days ago and so it seems appropriate I reflect on it now. Her birth marked a dramatic change in the course of my life, not only personally but professionally. It caused an immediate physical trauma and for a period an emotional and psychological one (for Rupert also). 

I was 24 when I found out I was pregnant with her. My older sister Clare had just given birth to her first child and I had been to London to visit my new niece. During this visit my sister said something like, ‘your turn next’. We had only recently returned from our honeymoon, we had also only recently met (given that I had been living in Boston for the previous year) and so children were something we were definitely intending to have, just not then. So I gave lots of reasons as to why we would be waiting a year or two at least. We talked about her pregnancy a bit and the birth and in the course of the conversation she dropped in that she had gone off coffee and alcohol during the pregnancy. 

Later that day,  at Victoria Station on my way home to Brighton, I had an irrational and sudden desire for some Burger King chips. As I sat on the train home stuffing these, animal like, into my mouth I paused for thought, recognising that my behaviour was not normal. I didn't particularly like Burger King chips, but these ones tasted like heaven. I had a nagging thought that would not go away. It related to Clare’s comment about going off coffee. I had recently not been enjoying my morning coffee and my taste for alcohol was not what it usually was. 

I started doing my maths. My cycle was always quite long and could vary by a few days either way. It was perhaps on the longer side this month. Then there was the small belly I had noticed which had made doing up my trousers quite tricky. I had taken this to be post honeymoon weight gain and had begun morning sit ups to try and tame the new fat. Having been pregnant 4 times now, these signs are all so obvious, but I had honestly not spent a lot of time considering pregnancy and had therefore no clue whatsoever what was a pregnancy sign. But on that train that night, I started putting them all together and considering any other strange changes. 

One stood out. My smell was heightened. I had recently become aware of smells I would not normally notice and one particular recent daily incident stood out as an example of this. At the time I was commuting to London, where I worked as a ‘Tutorial Fellow’ at the London School of Economics (basically a dogs body to the lecturers and researchers). I would catch the same commuter train every morning and sit in the same, Harry Potter like compartment (these still existed on the London to Brighton line then). I caught the train from Brighton Station, and at Preston Park, the first stop, the same man would get on in my compartment. This is what happens with commuter trains, people are creatures of habit and once they have found their favoured seat and carriage they covet it as if they owned the rights to that particular position. God forbid anyone else took your seat. The regular commuters unconsciously respected the natural order, but occasionally newbies would board the train and muck the whole system up. An occurrence which definitely signalled a bad start to the day. Nearly as bad as standing on a London underground platform, carefully positioned in a place you have carefully calculated will result in you being immediately in front of the doors when the train stops and the driver pulling the train up a little tighter forward or not quite as far up as usual leaving you facing a sheet of metal and window with the doors a foot or so to your right or left and you guaranteed a journey standing in close encounter with the armpits of fellow commuters. 

Anyway. On my normal commuter train I had begun to notice that this particular man smelt incredibly strongly of alcohol. I could almost see alcohol vapour as he exhaled. I have a face which I apparently don when I disapprove of something or see something that I don’t like. Rupert calls it my ‘camel pee under the nose’ face. I somehow scrunch my nose up in a sign of disgust or disapproval. Well, as this man sat himself down next to me there he would have whispered in my ear ‘there seems to be quite a bit of camel pee around’ had he been with me. So after a few days of this I had moved to the adjacent carriage. 

As I considered these recent subtle changes it crossed my mind, with some horror I might add, that there could be a chance that I was maybe pregnant. I passed a late night pharmacy on the way home from the station and bought a pregnancy test. Rupert had also been out that night but at the pub with friends. I waited until he arrived home to do the test. We had not even mentioned the word pregnancy for a long time, if ever, and then suddenly he was confronted by me holding a pregnancy test. He had only been in the flat for a few minutes before I disappeared into the toilet. The blue line appeared almost immediately. I still remember the shock. It was just so out of the blue, not part of our medium term considerations at all. Funny the detail you remember  about certain key moments in your life. I went and lay on our sofa in foetal position, honestly speechless, and started watching Cracker with Robbie Coltrane. Every tummy gurgle became laden with meaning. I had something inside me! I have to admit I was horrified at the thought. The next day I went to a book shop and flicked through some pregnancy books, still very numb. There was a very graphic, week by week book which I eventually bought and had by my bed to study as the weeks passed, but that day I was only up to flicking through books. I got to the section on week 40 and the birth and tears began to roll down my cheeks. Not sadness just shock and realisation. That would happen to me. 

In the end my pregnancy with Ella could not have happened at a better time. I was young and fit. We may otherwise have hung around for the perfect time, which so often never comes. This had forced our hand and we began our family then so I have always been a relatively young mother. Thank goodness because, rather than being a 44 year old with advanced cancer, and very young children, I am a 44 year old with advanced cancer and children who can dress and feed themselves, sleep through the night, almost get their school bags ready unaided and even help around the house and my oldest has almost reversed the roles and is now mothering me.

The pregnancy was pretty straight forward, I grew enormous. Rupert did all the cooking, shopping and general housework as I spent long periods eating magnum ice creams on the sofa and being generally spoilt (oh how this changes once you have your second plus pregnancy). The complications began only at the very end. Ella simply did not want to budge. We did not know if she was a girl or a boy (and never did for any of our children - nothing matches the magic of that moment when you find out). She was due on June 20th and I had become fixated by this date. After 10 days overdue I was under some pressure to be induced. I resisted as much as I could (I knew little about childbirth at the time and imagined that you just turned up at hospital and the midwives or doctors would deliver the baby - not recognising that it was in fact me who would deliver the baby and me who should be in control). 

On 2nd July I was booked for an induction. A few days before we had tried hot curries, lots of walking  up hills and castor oil, to no effect. Then I had acupuncture. I was sad that I would not spontaneously go into labour, it felt so sterile to simply turn up at an appointed time. That last night, July 1st 1996, Rupert and I played jenga. It was a funny old evening knowing we would never be alone as a couple again, this was the end of what had been a very short era and life was to change. We had the bag packed. We went to bed quite late and only a couple of hours later my waters broke. I simply bounded out of bed. It was too exciting for words, I had gone into labour and would not need inducing. An older more knowledgable me would have simply hunkered down and stayed at home as long as possible, even considered a home delivery as I had with William, our third. But at that time I wanted to get to the hospital as soon as possible (influenced by too many mad dashes to the hospital in films and TV programmes). I was the first of my friends to have a baby and so had really no frame of reference, I had no experiences to learn from and I really had read very little. 

At the hospital I dilated very slowly. July 2nd 1996 was a hot day. I was in a room high up in the Tower at the Royal Sussex, where so many Brighton babies are born. How many albums are there of those moments in labour and the view across Brighton from the labour room? After 11 hours and almost no progression, I felt in great pain and was quite distressed. Ella was posterior, which made things particularly uncomfortable. I had no really good tactics to manage this and was simply unprepared. The midwives were lovely, but during the course of the labour I went through 3 working shifts (the end of one and start of another with a full shift in the middle). I agreed to an epidural.

The epidural was not well sited. I was put on syntocinon to help progress the labour. The epidural was effective for periods but would then the effects seemed to fade and the anaesthetist was called frequently to keep topping it up. In the internal inquiry almost 2 years later, the review of my notes showed that I would have to have weighed something like 12 stone given the number of top ups I had over the period for the level to be safe, but I had not been recently weighed and it is unlikely I weighed anywhere near this. After another few hours it was decided that I was not progressing, I was stuck at 4 cms, and that a c-section would be the next step. By this time it was very very early on the morning of 3rd. The anaesthetist came to top me up again and decided to stick with the same epidural for the operation. Rupert asked if this would be OK given it had not been very effective over the previous day, but she was adamant that the dose would be significant and it was OK. 

I was wheeled into theatre, with Rupert accompanying. My blood pressure dropped (which can happen after so long with an epidural) and my teeth began to chatter. They removed the pillow from my head and my neck ached as I had been in one position for such a long time. The team in theatre (it is now around 1 or 2 in the morning) were pretty silent. No one really talked to us. The anaesthetist tested my stomach with ice (and she said later  performed a pinch test - i.e. pinch the skin to see if I could feel anything) to check that the extra dose through the epidural was working. I could feel the ice first time she asked (indicating the epidural was not effective yet), and remember her looking slightly impatient. She claimed later to have done the pinch test and that indicated all was OK. But the moment the surgeon started cutting through the layers of my stomach it was clear that the epidural was not effective. I could feel it. The surgeon later claimed that he had cut through the outer layers and it was not until he had got through these that I could feel it.

The ensuing scene was one you could imagine seeing in a dramatic episode of Casualty or Holby City or possibly a scene of battlefield surgery. From the moment I felt the knife I started shouting ‘I can feel the knife, I can feel the knife’. Lots of things happened at once. The surgeon (who later said he had lost confidence in the anaesthetist), then ordered that Rupert leave the theatre as they would have to do a general anaesthetic. In the meantime I am also shouting that my legs are falling off the table. I remember repeating it, and no one seemed to be talking to me. Again later, the midwife who was in theatre, and at the leg end of my body, described that my legs were moving and that she was having to hold them in place. I have often imagined what was actually going on and think it was related to the anaesthetic which worked in some patches and not others which meant that I did not have total control of my legs. The pain in my stomach was causing an involuntary movement in my legs. I think I must have been trying to do what you would do if you were punched in the stomach - and draw my legs to my stomach. But being not in full control of them it felt, from where I  was, as if they were falling off the table. 

They began preparing for surgery (all this time I am open and bleeding) and start putting a mask over my face. This was the only time I actually thought I might die. I am very very rarely sick, but I at that moment felt I was going to be sick and seeing the mask descending on my face I thought, this is it, I know being sick under anaesthetic is not good and I am going to be sick. So amidst all the other things I was shouting, I began repeating ‘I’m going to be sick, I’m going to be sick’. In fact it was oxygen they were going to administer through the mask, but no one was explaining to me what was going on and I had thought it was the anaesthetic to knock me out. At that point, again from statements after as part of the internal inquiry, we learnt that, as I was already part cut open they were not able to intubate me for the general anaesthetic and so the surgeon had no choice but to proceed until the baby and placenta were out. They called Rupert back in. He had been weeping outside the door, no idea what was going on, but he could hear me. Luckily he was called back in, although it was distressing for him and he suffered mild PTD for a while after, grinding his teeth at night, at least I had another witness to it. They had to simply forge ahead. The surgeon’s number two had to physically hold my stomach apart. Again my muscles were responding to the pain and the medication had not resulted in the relaxation that would normally enable an easy delivery. 

Ella was 9.1Ibs, so not a small baby and I am 5.3ft. This probably made the task of getting her out longer. All the time I am still shouting that my legs are falling off the table, no one is talking, presumably themselves in some shock, Rupert is at my head when they eventually deliver her. I had a moment of consciousness when they passed her to Rupert. We had been convinced she would be a boy so to have a girl was amazing and she seemed so big. Rupert held her by my head so that I could see her. I remember saying ‘She’s so big, she’s so big!’ and then, once the placenta was out, I lost consciousness as at this point they give me medication they could not give while Ella was still attached. I missed the next hour or so. From the moment they started cutting into me up to Ella’s birth, it had taken 26 minutes. Over the next few minutes they began the job of sewing me up. They chose to do this by removing my womb and placing in on my stomach to sew it up, which we were told, is apparently something they do sometimes. Rupert saw all of this and thought I was having a hystorectomy. I was during this time, sick in my mask, but with no one at my head except Rupert, it was he who had to call to them that I was being sick. As soon as they pumped me with whatever it was that made me lose consciousness, from Rupert’s perspective, I simply rolled my eyes and as far as he knew, could have been dead. 

 

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They finished sewing me up and rolled me into a recovery room. Rupert, who by this time had been up for over 36 hours with a couple of hours of sleep in the middle before I went into labour, had to work out how to dress Ella. He was distressed and in total shock. He had not been involved in packing the baby bag, he had no idea what was in it and a midwife helped dress her before they brought her to me. Luckily someone helped make sure she latched on early on, which helped breastfeeding as I was in no fit state to work out what to do. I was semi delirious when I first woke up and remember calling the midwife with my call button as I thought Ella had 6 fingers. Funny now, but shows how out of it I was at that time. 

It was very hard for us in the early days to know how to respond to the congratulations of family and friends. What had happened was unspeakable and we were in no state to repeat it, we had not processed it ourselves and this took us many many months. It was difficult also to be part of conversations where other new mothers talked about the various difficulties and complications of their experiences. I simply stayed quiet, mine was not a difficult birth it was an operation that had gone wrong, which happened to be for the birth of my child. It was not tea time conversation. Nor did I have friends who had even been pregnant. I remember for many years actually feeling lonely in this regard, I need to discuss it but it needed to be at the right time with someone who would help me relive it. Rupert and I did not actually discuss the details and emotions we had felt until a whole year later (on Ella’s first birthday). 

It took us a long time to get any kind of acknowledgement that anything had in fact gone wrong, and 2 years before there was an inquiry of any kind. Ella was fit and healthy and really so was I, except for severe anaemia from the massive blood loss and bruised insides and stomach. We were not out to sue the NHS. At that time they were under such constant pressure and concern that this might happen, that they responded in a way that made an early and open examination of what went wrong almost impossible. Things have changed dramatically over the past 19 years even though all is not perfect, but the defensive medicine and fear of acknowledging mistakes makes for little opportunity to learn and improve. Reflection of clinical errors and incidents in an open and safe manner are the only way that  these might be avoided in the future.  

In practice, there were a number of unfortunate events which together resulted in this outcome. No one deliberately wounded me but their fear of being sued and of the behaviour within their own professional hierarchical systems was not conducive to an open and inquisitive review of why this happened. It amazed me at the time that, had we not pushed, it was not clear that anything at all would changed as a consequence of this. I probed once and was told that they did have an internal system of logging serious clinical incidents. Aha! I said, then you admit there was an incident, and so in your view what was it. As it was mine was not initially logged as the indicator that would have been used to trigger this system was the amount of blood loss. If blood loss was over 1000ml then this would constitute a clinical incident but in my case, apparently, I had lost 950mls. Hmmm….does anyone smell a rat. How would you estimate a loss of 950mls compared with 1000mls when it is all over the floor? 

The first response to a long letter Rupert wrote to the Trust received a response which began 

‘Dear Mr and Mrs Howes, We are sorry that your birth experience was not what you had hoped for…’. I think they were mixing up a birth and an operation that went wrong. Do you think they would have said that had I been having my appendix out….’I am very sorry your appendectomy was not what you were hoping for…’. 

With the help of a group called the Association for Improvements in Maternity Services (AIMS www.aims.org.uk/) we slowly and systematically gathered the evidence, worked out how the system worked and actually built relationships with the hospital, which partly helped with the discussions as I think they began to trust we were there to find the truth to avoid it happening it again and for our own ‘closure’ as they say in America, and not because we were going to sue them. There was eventually an internal inquiry and there came a point after which we felt all that could have been done and learnt had been. I was by then pregnant with Tom and focused hard during his pregnancy to learn as much about managing my own labour through breathing and other techniques so that I could avoid unnecessary intervention and would not need to resort to other forms of pain relief (I do not count TENS machines or gas and air in this). Tom’s normal birth almost 2 years later exactly was a great healer. I avoided a c-section. I managed a normal delivery supported by a brilliant team of midwives and we had gone as far as we could in accepting and moving forward from Ella’s birth. 

It was this experience however that then framed my future career, professionally and as a local activist and advocate for improvements in the quality of maternity services. I joined the group AIMS, which had helped me so much, and was their Secretary for a few years. AIMS was established in the 1960s and initially advocated to end routine pubic shaving and routine episiotomy, entirely unevidenced based, painful and unnecessary interventions which women for decades were subjected to. It is also in large part thanks to their efforts that fathers were eventually allowed into the labour room and women were not forced to deliver lying on their backs. 

I then joined and ultimately Chaired the local maternity services liaison committee (MSLC), which is a statutory group established to bring users and service providers together to improve local services.  After about 10 years in these roles I joined the then Primary Care Trust as a Non Executive Director, and through this hope I played a part in efforts to improve local services. Brighton and Hove at the time of William, my thirds birth, had one of the highest home birth rates in the country. I am less in touch with services locally now but it was the focus of a good part of my life. Alongside this I began a PhD. I was at that time trained as a demographer. Demographers are concerned with population and what makes it change, fertility, mortality and migration. My interest has always been in reproductive health, safe pregnancy and childbirth. In my Phd I focused on Quality of Care in Maternity Services, in this case in low resources settings (urban slums in India) - but the principles remain the same whichever part of the world you live in. And so began my career which I continue today working to support improvements in maternal and newborn survival in parts of the world where women and babies continue to die at rates and in ways we experienced over 100 years ago. Preventable deaths during pregnancy and childbirth are an outrage in the 21st century. I pinpoint the passion for this work from Ella’s birth. It opened my eyes and forced me to become my own advocate to start with and ultimately an activist for others. During this time I learned everything I could about what constitutes high quality care, why care falls below certain standards and what can be done to improve this. More about this in a later blog.

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It is hard to believe it is 19 years since this all happened. We were so thankful that at no point did Ella seem even the slightest bit distressed, she was calm and together, not a blip in her heart rate, just as she is today. And through what could have been (and was to an extent) a tragedy came a passion and a drive which has consumed me ever since. I see this cancer as another such a moment. As with Ella, I knew very little about the politics and reality of care provision that could result in the experience we had. With my situation now my eyes are being opened into what I am certain is not an environment which is delivering good access to treatments and care options to people with advanced cancers. With poor maternity care, which many have experienced, women are often unable to engage actively to stimulate improvements as they are grappling with the challenges of a new baby. With advanced cancer, people can be too ill, too scared and too confused to challenge what is on offer and not around long enough to keep the pressure up for sufficient time to make the difference. We need groups like cancer research to take on some of this challenge and really advocate for patients. And we need the voices of patients themselves and their families to rise up and rattle some cages. Something needs to change - I am working my way to understanding the what and how and identifying individuals and groups who came to this conclusion a long time before my own epiphany.