Rudely Interrupted…

Mum started this blog after her first diagnosis in 2010, and then continued it after she was diagnosed again in 2015 (this time with stage 4 cancer). A few months after Mum died, I began to document my experiences of grief. You can find all of our posts here.

Mum wrote… ‘In a way you already know me. I am a wife, a mother, a daughter, a sister and a friend. My wonderful life, like so many others, has been rudely interrupted and this is my journey.’

June 03, 2015

At Sea….hot flushes, night sweats and memory issues

June 03, 2015/ Lou Hulton

I know that none of this is going to be easy and that there will be ups and down but that does not make the downs any better. I have become an obsessive reader of self-help books - anything with the following in the title will do; how to heal yourself; mind and spirit over body; radical remissions; remarkable recoveries; I healed myself; 12 natural cancer cures; cancer survivors bible and so on and so on. When something rocks me I retreat to my bed (or for an Epsom bath) and practice my breathing while I read one of the above to pull myself together and feed me uplifting content to refocus my brain. This is what I did after the scan. The scan was disappointing. But I was more together after this result than I was the last time I had exactly the same result.

I (with the help of these books and the youtube survivor testimonials) remind myself that healing takes a while – it will not happen overnight. My bloods are good and I am well and this is what matters and my treatment continues. I did want to avoid military euphemisms but sometimes it cannot be helped. The attack continues to get these rogue cells back in order.

I do feel at sea since the chemotherapy, imagining every tweak in my side is the cancer reigniting, every nauseous feeling a result of a diseased liver. It feels like having Golum (Lord of the Rings) on my shoulder, one minute whispering ‘just stay positive, you are healing, all is well’ and then the next (imagine a Golum voice) ‘nasty cancer, cancer is growing, precious cancer’.

I had a test a few weeks ago called a chemo sensitivity test. This costs £1800 and was possible thanks to support for cancer is pants. It involved a sample of my blood being taken and sent to a laboratory in Greece well known for doing this analysis. I had learnt about it from the Inspire website (for people with advanced breast cancer). Members of this site had referred to it as the Greek Test. I live close to an integrative medical practitioner (Vision of Hope Clinic in Brighton) and he also had suggested I have this. It assesses the responsiveness of my cancer against a range of chemotherapies and also natural products.

The results came back a few weeks ago and identify about 3 chemotherapies which, according to this analysis, would be most effective on my cancer (in the event I need, or decide to have chemotherapy again). It also indicated responsiveness to hormonal therapies and there were 4 that looked good (including letrozole which I have just started). In terms of other natural supplements I was rather disappointed at how many (or rather how few) supplements looked as if they may influence my cancer directly. This does not mean other supplements will do nothing, they can still work to strengthen my immune system but only a handful looked as if they would actively act on my cancer. These included super artimisinin (which I had started already), paw paw (I had to work out how to source this), and B17 (or apricot kernels). So I have updated my supplement regime to reflect this.

A bit more on chemosensitivity tests

Cancer doctors principally rely on the statistical analysis of large treatment trials, to decide which drugs to use for specific cancers. There is a growing interest, however, in personalised cancer therapy, which involves identifying those treatments which may work best for an individual’s cancer. Chemosensitivity testing is one method of doing this.

Chemosensitivity testing involves testing an individual’s cancer cells in the laboratory to see which drugs demonstrate the best response. It therefore provides guidance about which treatments may be best for the individual in clinical practice.

The test involves a blood test (or sometimes tissue). Tumour cells are identified and isolated from the sample for the following analysis:

• Viability testing of chemotherapy drugs
• Genetic profiling for guidance about targeted therapies eg; monoclonal antibodies
• Viability testing (and identification of mechanisms of action) of natural substances which may be used as part of a complementary treatment strategy .

The results are presented in a written report which your doctor can use to help guide your treatment options and choices.

http://www.rgcc-uk.com/chemosensitivity-testing/

http://www.positivehealth.com/article/cancer/cancer-chemosensitivity-testing

Alongside my supplements my hormone treatment has now begun. As my cancer is estrogen responsive – ie it feeds on oestrogen, hormone treatment involves reducing the amount of oestrogen circulating in my body. The drug that I have been prescribed to do this is called letrozole but it is for post-menopausal women hence the need to put me into menopause via a monthly injection in the first instance. I had this on Friday. I had not really focused on the side effects of this or of letrozole as I had been focusing on the chemotherapy, and then the time was upon me.

I went to my local GP surgery and saw my GP before the nurse who gave me the injection. I used this as an opportunity to politely feedback to the GP practice that they need to get their act together when it comes to ‘non specific symptoms’ from women who have had primary breast cancer. When I first started getting very dry skin and some non specific symptoms like heart burn and I went off alcohol I was treated very slightly as if I was experiencing the ‘very understandable fear factor’ that people who have already had cancer can feel when they get a strange twinge or ache. And it is true, I had lost confidence in my body and every time I got some strange symptom cancer would of course cross my mind. In this instance I went back to the Doctor 3 times in a short space of time. The last one to get a letter for my work insurance company, as I had to cancel a work trip to Zimbabwe and Malawi because of my symptoms. Did this spark anything? The blood test I had prior to this particular appointment had come back with ‘satisfactory’ scrawled on it by the GP who had reviewed it. What I know now but would not have known then, is that despite all the blood data (including for my liver) being fine, they had not tested for the one marker that would have been raised (GGT). In fact the ALT (a marker of inflammation) was in fact just one point above the normal range and the other markers were on the higher end of normal. I persisted and kept going back until I was referred but I wonder what would have happened had I simply accepted that these bloods were good and not persevered until my symptoms really were unbearable and possibly life threatening.

They have been a great GP surgery for myself and my family for many years but I fear this is a chain of events that would have been similar in GPs across the country. Itchy dry skin, tiredness, heartburn would all suggest (among other things)something is up with the liver and therefore if someone with primary breast cancer in the past experiences this, the least the GP should do is really check it out.

As it is, nothing would have changed the fact that the cancer had made a home in my liver and I am where I am. So after my discussion with the GP who prescribed the letrozole and injection I went to the nurse. I had imagined the injection would be a bit like a vaccination but in the fat in my stomach rather than my arm, so I was quite relaxed about it. The nurse, who knows my family and has given all of us injections at some point in the past, tried the get it over fast approach, rather than warn me that it might be uncomfortable (love this euphemism) in case I tense up. As it was it was absolutely excruciating and I was in such shock I burst into tears and asked dramatically if she had accidentally poked it into my stomach or my muscle. The needle was huge with a hole through the middle of it, once it is in your stomach there is a staple like movement which shoots a small rice like pellet subcutaneously which slowly releases hormones to induce menopause. So not only did the injection of the needle hurt, it was followed by an electric staple shock.

I am usually quite a toughy when it comes to needles and procedures, and have spent the last few chemos watching as the nurses have tried various veins until they get one that will work, quite unmoved, so I was surprised my reaction was so dramatic. I think I am just feeling a bit physically vulnerable, I am tired from the chemo and not as strong as I was and I have been prodded and poked quite a bit over the past 16 weeks and this sudden unexpected pain was just enough. I lay there crying for a bit and the pain subsided. I felt bruised but by the end of the day it had settled down. I felt slightly embarrassed at my outburst and asked the nurse if she had ever had anyone else react so badly. She said yes one woman had become hysterical. Which I think makes me her second most dramatic patient.

I then went to pick up the first of what I hope are many supplies of letrozole. Hormone treatment can be as effective as chemotherapy treatment (and in this case I hope it will be more effective) but it can take 2-3 months to kick in. So I do feel slightly at sea. The scan shows the cancer. What is it doing? Sleeping? Inactive – not really sure what that means. I imagine I can feel my liver all the time and have to remind myself to breath and manage this fear. I have a new mantra from one the books I am reading. Breath in calm. Breath out smile. So if you see me walking around with an incongruous smile on my face I may be bringing a fear under control.

Side effects from chemotherapy are one thing, side effects from induced menopause are another and I have a lovely leaflet that lists them all out carefully so I am in no doubt. I need to consider how best I avoid or manage these but here they are:

Hot flushes
Night sweats
Vaginal dryness
Palpitations
Mood changes
Joint pain and risk of osteoporosis
Bladder problems
Putting on weight
Fatigue and tiredness
Changes to hair and skin
And the one I find particularly worrying ….effects on memory

Chemotherapy can induce menopause also and while I felt pretty lucid for much of the treatment I have noticed that my brain has a more cotton wool feel to it that it did before. The number of times my children either finish off my sentence or second guess a word I can’t think of is increasing noticeably. Although I have to say they claim my behaviour is no different to pre treatment. At the weekend we went on a walk and I forgot to change my soft shoes for gumboots so, once we hit some mud I had to go back to the car to change them. Once I had changed them I realised I could not find the car keys and spent about 10 minutes searching, on the car seat, in the foot well, under the car. Where could I have put them? Pockets – had none. I was contemplating simply closing the car door and walking back to join Rupert so we could at least continue on the walk. We could search more when we got back. And then as I stood up to close the car door I realised that I had been holding the keys (on their key ring) between my teeth all that time. The leaflet on menopause suggests doing puzzles and crosswords, tasks to keep those brain cells moving. Gulp.

And now of course there is Germany. I am nervous to get too excited about any treatment as I need to protect myself from disappointment if it does not do what I hope it will but I do feel hopeful that this team in Germany have good experience at working with people to extend their lives, keep their disease stable and as I have said before, in some cases achieve a full response. In addition to the vaccine I will have hyperthermia to the liver. This involves heating the liver up (cancer is not as robust as healthy cells and does not like heat) with lasers. My chemotherapy sensitivity test indicated that my cancer was vulnerable to heat. Luckily there is still a good deal of cancer visible in my liver for it to get to work on! (that is the Pollyanna response) .

Super foods chia seeds bee polen green tea almond milk sauerkraut and ashtanga powder

Before I go to Germany I have a small mini break to Portugal with my husband. Through all of this Rupert and I have had so little time together. He has continued to work and had taken on a greater load at home and with the children. He has just been on a holiday with the two younger boys, which I would have normally gone on with them during half term but we reckoned it was too soon after treatment. He travels with his job and when he is home we get on with family life, but as I get most tired in the evening he takes on more of the parental role (and when he is away Ella does this). But we have not had any special time together, except a few walks at weekends.

This is not enough time for us to really talk. We immediately swung into action to absorb and make family life as normal as possible, to communicate that life remains joyful and hopeful. We had to, and continue to go through some administrative must dos in this situation, including scenarios for an unknown future – financially, administratively. Most of the direct debits related to the kids comes from my bank account, their pocket money, telephone deals, the family netflicks account, the apple account etc. We have not worked these out but I have been compiling a list so that we can slowly transfer these to Rupert’s account, just in case. I recently signed Ned up to something which I have to control of until he is 13. Of course I intend to be here when he is 13, that is only next year, but these situations continually arise. A 5 year guarantee for something. The expiry date on my debit card. All reminders.

Anyway, before I even knew I would get to Germany Rupert had a work meeting scheduled for Wednesday to Friday in Portugal so we agreed it would be a good time for me to have a small break after treatment and booked me to join him. The first ever work trip I have ever accompanied him on. This is a 3 day break and I arrive back on the Saturday but leave for Germany the next morning so my bedroom is covered with suitcases and piles of clothes. I have even bought a compact juicer so I can continue juicing (not sure it is quite as compact as I had imagined), and I have organised my supplements into little bags for each day. I have failed so far to purchase a swim hat and am still not quite sure how I manage a) lounging by the pool – my skin is super sensitive to sunlight still, my wig would be super hot and bald would not be a good look. The problem with thin scarves are that if they come loose it is really difficult to adjust them without a mirror b) a walk but along the beach – if there is a sea breeze it will blow the wig up revealing its wigness. Here I wear a beanie hat (even when the sun is out sometimes) to keep it attached . I need to practice with scarves again, but this time ones to keep the wig in place.

Working out administrative and financial arrangements is on-going, working out our emotional response to the possibility of me not being around is something different altogether. We know we have had over 20 amazing years together and have been blessed to have had this time, but suddenly our future, or the range of futures we had imagined, have been blown away. We are working on terminology. I am not ill, I am healing. I am not dying, I am living. Uncertainty is a feature of everyone’s lives, our imagined futures were just that. Nothing has changed. We must now focus on now and everyday. Having some time to work through this together is what we need.

June 3rd - At the airport ready for some Time together.

May 26, 2015

Scan three...results

May 26, 2015/ Lou Hulton

Hmmmm....so my liver looks exactly the same as when I started. I feel well and my biochemistry is good so I am described as being stable and assured that I am in a safe place. I will start the hormone treatment as planned and that will be followed up in 6 weeks to see how the bloods look. I will also have a PET scan as my results are difficult to read from CT on its own and that a PET scan will give them a better idea of what is going on which will be important as a baseline.

I know the take away should be that I am in a safe place, and I should focus on the fact that it has not progressed which presumably was the trajectory when I was first diagnosed, but I would be lying if I did not say that I feel very flat. I will continue to read my book on spontaneous healing, I have Germany coming up and they will do hyperthermia to the liver, maybe that will blast some of it away? And hormone treatment can be very effective. And, there are still many rungs to the ladder for advanced breast cancer. But this was not an A* result. From the survivor stories I have read and seen it usually takes a minimum of 2 years to see any significant response so I should not be greedy, but after 12 chemotherapies, a radical change to my diet etc I would have liked a bit more of a response.

Onwards and upwards....

May 25, 2015

Emotional Roots and Spontaneous Healing May 25th

May 25, 2015/ Lou Hulton

Thursday was scan day. I know the routine now. Explanation of the procedure (to which I now nod knowingly being an old hand by now). Remove clothes (including bra but not pants). Wait to be called through to the scan room. Walk through part of waiting room in grim, do up at the front, outfit with shower curtain design with bandana on (cancer patient walking to scan – must be serious).

Then in the scan room I lie down and have a cannula inserted into my right arm, ready for the iodine liquid to be infused through my body to help the scan pick up what it is looking for. This time I did not have the Polish scanner man (radiographer? Real job title – not sure) but someone new. No chance of reading her face as she had no idea what went beforehand. I noticed this time how quickly it takes between the iodine mixture being infused and being able to taste a metallic taste in my mouth and, I may have mentioned this before, a warm feeling between my legs, which makes some people feel they need a wee. It made me think about the chemotherapy and how quickly therefore it must race round my body when it is infused.

I was weepy on scan day. I have been tired this week and tiredness makes me more emotional, but scan day was a bad day. Simply going through the motions of the scan simply acknowledges the situation. That unsettles me. It is like seeing things written down. I tried to use visualisation techniques as I went through the scanner and shut my eyes tight. My mad Dr Who Numbskulls and Ghostbuster visualisation was too complicated for that short moment so I went for trying to focus on a bright white and a symbol, a purple amethyst (supposedly healing). But I simply couldn’t conjure up the colour purple, so I changed tack and imagined I was on a boat, a sail boat. When the machine projected me forward, through the polo shaped scanner, my sail boat switched on its engine. It didn’t last long, but was sufficiently distracting.

After the scan you have to hang around for half an hour with the cannula still in to check in case there is a bad reaction. As I had to not eat before the scan, I had missed breakfast and was by this time slightly gritty and even more tired. It is all over now and my results are on Tuesday. I have had a very gripey liver feeling which may be a) real b) deferred pain c) ghost or imagined pain. My liver has enlarged over the past couple of days and is sitting annoying me as I write. I think probably this is imagined but I find it impossible to banish this from my mind. I need to work harder at my mindfulness and meditation to manage this. I like to think it is in fact, as I have mentioned before, simply a cancer cell death bonanza – a necessarily messy affair.

I will post a very brief update soon after the 26th appointment.

I missed two chapters to the strange story of my left breast last week. I remembered only after I had posted the blog, so I will add them now. One relates to a period of my life when Ned, my fourth, had just finished breastfeeding (at around 13 months), so before my trip to Geneva, but possibly related. This was a particularly elephant shrew period of my life with full time job, young children and Phd all at once. I started getting symptoms which were diagnosed as rheumatoid arthritis, this involved my shoulders (which at night became so painful I could not life my arms up); carpal tunnel syndrome in both hands/wrists and all the joints in my fingers seizing up so that I could not make a fist, which made simple tasks, like putting on a nappy or closing a door knob impossible. The consultant who eventually diagnosed me put me on steroids which almost immediately eliminated the symptoms and then put me on a drug called sulfasalazine – which is an immunosuppressant (aimed at dampening down the disease process).

I was on this for 2 years, I barely saw the consultant (rather one of his team) and at some point doubted that the immune suppressants were doing anything, so I slowly came off them and I have never had the symptoms since. I have since wondered whether in fact I had rheumatoid arthritis at all, the consultant paid little attention to my personal circumstances at the time and when he diagnosed me, I remember saying tearfully ‘but I have four small children’ and he nodded his head sagely and responded ‘yes, it is going to be hard’. No reassuring words about the many approaches to managing the condition etc. Something I will refer to as Medical Pessimism, the title of the Chapter of a book I am reading at the moment and want to share. I will come back to this. The powerful influence the practitioner can have on the patient is often forgotten. They have the power to create an inevitability which then defines behaviour and expectation and are often unaware of the power of everything they utter in determining a patients response to a diagnosis. From the perspective of my cancer, this part of my story is significant because at this clearly vulnerable time in my life, in terms of the stress on my cells from the emotional and physical pressure of working with small children and my body having managed 4 pregnancies and breastfeeding over the previous 8 years, I was put on immunosuppresants. In my mind I can’t help thinking that perhaps this was a window in which what my body was really saying is ‘enough!’ and I actually needed to focus on getting some balance back but instead I was given drugs to supress the immune system . Perhaps it was this that provided the window of opportunity for the cancer to take hold as my immune system became unable to manage the cancer cells (that were and are in all our bodies) allowing it to take advantage of whatever predisposition I may have had.

The second event that Rupert and I have always wondered about, was my initial biopsy. A biopsy (in this case a core needle biopsy) involves the removal of small bits of tissue from the centre of a suspicious lump/abnormal tissue. When I had my biopsy the radiologist did this twice, in quick succession to ensure he got a good sample. The biopsy itself feels like a massive stapler shooting into your boob and it is uncomfortable. Mine resulted in blood from the entry wound and a massive green, purple and blue bruise and considerable discomfort for many days after. Internal bleeding? We have asked my oncologist about this a number of times and been reassured that this mixing of tumour and blood are unrelated to its later spread. But I cannot get this sequence of events out of my mind.

I was later found to have no positive lymph nodes and no ‘vascular invasion’ – this invasion would have indicated that the tumour had started setting up its own blood supply and so indicated that the cancer had had a chance to enter my blood stream. So not having vascular invasion was greeted with a very positive reception from my surgeon and oncologist. This was a good thing. But then my biopsy had blasted a needle directly into my tumour, made up of millions of cancer cells, causing lots of localised bleeding. Surely some of these cancer cells must have escaped from the tumour and mixed with my blood? However many times I am told this is not how it works, I simply cannot get this potential out of my mind. Can this help explain how the cancer spread from an otherwise contained space, successfully surgically removed , through my blood and into my liver. I will never know.

Emotional Roots

What I did not explore last week was the emotional roots of disease and the importance of addressing these as part of a broad strategy for healing. I have to admit that I have been least open to this fundamental strategy for healing. I have read some important testimonials of people who addressed some major emotional events or circumstances in their past and present and believe that resolving these was critical to the success of their whole body healing. But their stories are generally about major dramatic events, abuse, unhappiness in marriage, loss of a child etc. My history has nothing so dramatic in it and I consider myself to have had a privileged and happy life, with a loving family as a child and my own very loving family. But in the spirit of being open to every strategy I have considered my own past and there are two events which at least in my life were significant. We are most certainly a family with a very stiff upper lip. Pick yourself up and get on with it. Don’t be dramatic. Stoicism equals strength. And these have been helpful in many circumstances. But I will not be the first person with this background who on reflection wonders what might have been buried.

I am one of four children, three girls and a boy. I was number two. My father was in the army as we grew up and this meant we moved every 1- 4 years throughout our childhood. This was a mammoth task for my mother who miraculously managed the transition from one army quarter to another seamlessly (at least that is what it seemed to us children). Army quarters often have exactly the same lay out and so by using much of the same furniture she was able to make each house look almost exactly the same as the last. We would have to share rooms, and being number two I shared alternately with my older and then younger sister (and certainly felt hard done by as those in my situation will relate to). Moving home also meant moving school frequently and by the age of 9 I had been to 11 different schools (see three school photos from different schools below). I totally missed out how to read the time until my parents realised, by which time digital watches had just become available to the mass market, and at this time we lived in Saudi Arabia where you could buy these sorts of things in the markets quite cheaply, so my first watch was digital. I was very proud of this but it did not help me read a clock with face and hands which I eventually conquered.

Many army children eventually go to boarding school, as like many such professions which require multiple moves, education can be very disrupted. For me this happened aged 9. At the time we lived in Riyadh, Saudi Arabia where I had been to school for 2 years. My older sister had been sent to boarding school the year before I went and I had been rather jealous at the many excitements I perceived to be associated with this move. For starters she got to have her own toothpaste and shampoo, she was bought a new set of stationary, there was lots of fuss around getting her uniform organised and buying her multiple packets of sweets for the weekend when the children were allowed to choose some items from their stock of sweets.

We spent the summer before I went to school for the first time, in the UK. I still remember the excitement I felt as we slowly prepared my own trunk. We bought me my own toothpaste, ‘home clothes’ and sweets etc. Eventually on the day my sister and I were taken to the school we visited a butterfly farm with my Mother and one of her brothers, my Uncle. I paid almost no attention to the beautiful butterflies and badgered my mother to hurry up so we could go to the school.

We arrived and took our school trunks to the school gym where they were all laid out together with every other pupil. The school was an all-girls convent in the South of England. From bounding out of the car and dragging the trunk to the gym through an unfamiliar building, with an unfamiliar smell and bustling with other girls my mood suddenly changed. I was not quite so sure anymore. I did not know the layout of the building. The smell was unfamiliar. It was full of girls I did not know and some of them were crying. I realised they must be sad to be saying goodbye to their parents. And then it hit me. Any minute now I too was going to have to say goodbye to my Mummy (which is what I called her at that age), and then what? I would be left in this strange setting and I didn’t know where to go and who would I talk to and what would happen? My mother was always very good at not prolonging this moment and had clearly anticipated it. She gave me a quick hug and kiss and disappeared. And that was it. In one moment my heart simply dropped. The enormity just hit me. She would be going back to Saudi Arabia. I would not see her or my father or my younger brother and sister for three and half months. The most I had ever been away from home was one week with my Granny in Wales, and even then I was homesick.

I can’t remember how I got from the gym to the dormitory that would be my home for that term. It was called Junior Dormitory and was a long room with cubicles along either side, with partitions low enough that you could climb up and peak over the top of to talk to your neighbour, with a curtain to close it off. Each cubicle had a small basin and mirror and set of drawers with a small cupboard above it. And of course the bed on the left as you entered the narrow space.

That first night will never leave me. The realisation that, that was it, I was there and that is where I would stay for the foreseeable future and the overwhelming homesickness I felt, not only that night but for many, many nights not only that term but for many years after returning to school after a school holiday. The week before any school term began would see my mood plummet, I became irritable, teary, and argumentative. My mother knew exactly what was going on and would be more gentle than my behaviour warranted. On the morning that I went back to school I would lie in my bed when I woke up, gripped with dread, and stare at the clock, willing it to stop. It got better as I got older but for many years after I associated Sunday evenings with a feeling of dread that I called a ‘going back to school feeling’. In the early years, if I was crying myself to sleep a nun would come by and try and gently shake the mattress, presumably to me soothe me to sleep but it always felt more like being on a rather violent train journey, not at all soothing. I was not the only girl who was incredibly homesick, there were quite a few of us and we all, even today, remember and possibly relive at times the ‘going back to school’ feeling. Remember that this was a time with no internet, no mobiles and with parents living abroad I could not go home on the set exeat weekends (when you were able to go home) or half term. I spent these weekends with my best friends and their families and they feature strongly in my memories of growing up. We relied on letters, and wrote home once a week. There were three phone boxes, which took ten pence pieces, but these did not work for Saudi Arabia, so for the first 2 years of my school life, while my parents lived in Saudi Arabia, I could not even talk to them during term time.

The memory of my first bath, which I had on that first night, is what has never left me. The Sister (nun) who cared for our school age told me where the bathrooms were and I remember putting on my nightdress and slippers and walking up some echoy stairs to a corridor with lots of doors, each one a bathroom. I went into the first one I came to. I ran the bath. It was cold and the bathroom rapidly became quite steamy. Getting into a warm bath reminded me of home and I sat in the bath crying my eyes out, gulping for breath, just wanting my Mummy. I had almost never had a bath on my own, I was always sharing one with at least one sibling and my mother would always be bustling in the background. Here I was in a strange building, in cold room, on my own. And the worst thing that could happen, happened. Some older girls walked straight into the bathroom. I had not locked the door. Why would you lock a bathroom door? I am not sure we even had a lock on our bathroom door at home, so it had not even crossed my mind to do this. The girls retreated but laughed outrageously and probably enjoyed telling their friends about how they had just walked into the bathroom with a new girl in the bath. I jumped out and locked it and got back in. Cried for bit longer, although I was running out of tears until, I decided it was time to get out and go back to the dormitory. I got out and realised I had no towel. Again, why would you bring a towel to the bathroom? In a family bathroom there are always towels. It had not occurred to me to bring my towel from my cubicle, I don’t think I had even noticed it. I was only 9. I stood, dripping and steaming in the cold bathroom and when I was dry enough I pulled my cotton nightdress awkwardly over my head. It stuck and clung to my body as I tried to pull it down. I made my way back to my cubicle, bypassing the Sister so she would not notice I was wet and got myself into my bed where I sobbed on and off until I went to sleep.

My parents made the very best decisions for our family circumstance, and many people have very fond memories of their school life at boarding school. I do also, but they are not without many memories of homesickness and separation. I have a cohort of friends from my years at that school, who have kept in touch ever since and today provide an incredibly loving support network for each other and they have been one to me throughout. I am also happy in my skin now and my school life clearly has played a part in that, but I cannot because of this ultimately positive reflection of time, forget the child me who simply could not bear being away from home. When my own children hit 9 I often thought how they would have coped and it always bought back a sadness that for me, I was too young and that loss and separation was emotionally significant in my life.

Recognising these feelings as an adult are part of acceptance and good to reflect on and address as part of a strategy to address emotional roots of wellbeing or disease.

I will talk about the second major emotional and physical event in my life, Ella’s birth, next time. I want now to talk about the book I am reading now which is inspiring and educating me. It was given to me by a friend who is herself an osteopath cum healer. In fact she gave me 4 books. The first I skim read in about 5 minutes. It was actually called 5 minute healing, or something like that, and perhaps I dismissed it too soon, but my initial reaction was that the message in the book had perhaps been stretched unnecessarily over many pages when it could really have been communicated in a couple. The second book (I have not started the third or fourth) is absorbing. It is called Spontaneous Healing and is written by a man called Andrew Weil, who studied biochemistry and medicine at Harvard University. It was first published in 1995, 20 years ago and the only criticism I have so far of the book is the front cover which includes a photo of the author who looks like a mad Professor with a slightly comic beard, huge and freshly brushed, grinning out at you (and now a cup stain). Had I not been recommended the book this may have put me off had I been searching bookshelves for a useful resource.

Spontaneous Healing

The focus of this book is the body’s natural ability to maintain and heal itself. I want to copy some short sections from it to give you a flavour of the book and how it helps me strengthen my resolve to focus on the potential to heal.

‘…a philosophical debate about the very nature of health care has been ongoing throughout history. Doctors believe that health requires outside intervention of some sort or another, while proponents of natural hygiene maintain that health results from living in harmony with natural law. In ancient Greece, doctors worked under the patronage of Asklepios, the god of medicine, but healers served Askelpios’s daughter, the radiant Hygiea, goddess of health.

……

Let me give an example of how these different philosophies lead to very different courses of action. In the West, a major focus of scientific medicine has been the identification of external agents of disease and the development of weapons against them. An outstanding success in the middle of this century was the discovery of antibiotics and, with that, great victories against infectious diseases caused by bacteria. The success was a major factor in winning hearts and minds over to the Asklepian side, convincing most people that medical intervention with products of technology was worth it, no matter the cost. In the East, especially in China, medicine has had a quite different focus. It has explored ways of increasing internal resistance to disease so that, no matter what harmful influences you are exposed to, you can stay healthy – a Hygeian strategy. …Although the Western approach has served us well for a number of years, its long term usefulness may not be nearly so great as the Eastern one.’ (pg 4)

He goes on to talk about the examples of antibiotic resistance and of toxic impacts of some Asklepian approaches ‘ Meanwhile, resistance does not develop to the tonics of Chinese medicine, because they are not acting against germs (and do not therefore influence their evolution) but rather are acting with the body’s defences. They increase activity and efficiency of cells of the immune system, helping people resist all kinds of infections, not just those caused by bacteria.’

The author is ‘uneasy about the suppressive nature of conventional medicine.’

‘If you look at the names of the most popular categories of drugs in use today, you will find that most of them begin with the prefix ‘anti’. We use …anti hypertensives, anti depressants…anti histamines… this is counteractive and suppressive’

What is wrong with that? You may ask. ….I have no objection to their use on a short-term basis for the management of very severe conditions. But I came to realize, early in my hospital days, that if you rely on such measures as the main strategy for treating illness, you create two kinds of problems. First you expose the patients to risk, because, by their nature, pharmaceutical weapons are strong and toxic. Their desired effects are too often offset by side effects, by toxicity.

The second problem, less visible but more worrisome, is the chance that over time the suppressive treatments may actually strengthen the disease processes instead of resolving them.’

I am looking for a balance between both approaches to my own treatment but fundamentally believe in the potential for my body to heal, and keep the cancer in check. My fascination with immunotherapy, clearly influenced by the breakthroughs with the treatment of some melanomas is that it feels more like a healing approach, an approach to treating cancer far removed from the toxic chemotherapies, which works to help the own body’s immune system manage its own rogue cells. I imagine a future, a future which I would like to be part of but may have peaked too soon, in which we will tell our grandchildren of the times when cancer was something they used to treat with these medicines which were so horrible they made people’s hair fall out and them to feel sick and tired. I know the work in Germany still has a way to go, but it has had promising responses and is the closest I will get to an immunotherapy in the near future.

Dr Wells learned from Bob Fulford, one of the pioneers of cranial osteopathy and took away ideas that he found most useful in his own work as a physician and these were:

· The body wants to be healthy

· Healing is a natural power

· The body is a whole, and all parts are connected

· There is no separation of mind and body

· The beliefs of practitioners strongly influence the healing powers of patients

I have not finished the book and look forward to those moments I can continue to learn from it.

My younger sister Cecilia came to visit last week, with her youngest child, Lucy. We had some very happy times. She lives in Singapore and I know has felt very far away from us all during this time. She was given ‘compassionate leave’ from her work to visit. Gulp. That is serious. And seeing my beautiful nearly 2 year old niece prompted thoughts of my own mortality. My Grandfather had a sister who died in her 50s, she died quite suddenly and we never knew her, we just know of her and some in the family, among the younger generation, would struggle to remember her name. Looking at Lucy made me think that for her I might be just like that Great Aunt. My children are old enough now that were I not to live the full life I intend to live, they would have strong memories imprinted on them, but for little Lucy, if I follow some of the statistical averages for my condition, I would not even be a memory but a story. I had a tired week, and wept frequently but it was good to weep. ‘Free flowing emotions’ as we were taught at Penny Brohn are good.

I also had a session with a good friend who has been giving me sessions of Rosen Therapy. She offered to support me with these sessions when she saw on my blog that I was struggling with the emotional and spiritual strategy for healing from the radical remission 9 point plan. This is a description of Rosen Therapy:

Rosen Method bodywork is a powerful tool for stress reduction and for reaching the body/mind connection through touch. It is a type of complementary health care often recommended by doctors, psychotherapists and chiropractors as an adjunct to their treatment. Rosen Method is effective in easing chronic tension and its ill effects on the mind and body. It is a valuable technique for personal growth and for finding the path of the heart and soul in one’s life and living more fully in the present

www.rosenmethod.com

I have found it very subtle but incredibly powerful. I wanted to address this element of healing and this is really helping. It was in one of these sessions that my friend asked me gently about my past and what in the past would make me cry (as I had said I used to cry as a child but rarely cry as an adult except when very tired). This made me think back to when I was a child and what came out was that apart from infuriating arguments with a sibling which might elicit tears, I cried, and I cried a lot, because I was homesick. And so poured out the above story and I truly wept that session but have since felt released in some way. Maybe this is what is meant by an emotional blockage, just confronting it, and acknowledging it opens the way to simply accepting it and making peace.

Cecilia and I talked about our time at school, and our own experiences, probably for the first time ever as she was 3 years younger than me and I honestly barely talked to her at school and left home more or less when I left school at 17 as we had moved to another army barracks where I had no roots or friends. I gave her what I thought were bath salts so she could have a relaxing bath one night, but these melted in the bath revealing rice krispies and chocolate. This was definitely not a sibling prank but a genuine mistake but we laughed and laughed.

May 18, 2015

The strange story of my left breast

May 18, 2015/ Lou Hulton

May 17th 2015

Ned wearing my Wig- the first time round!

So Thursday was my final chemo of the 12 sessions I was prescribed back at the end of January. I have had these weekly, with a week off every third week, which stretched the course over 16 weeks. The time has passed so fast I can hardly believe this stage is now over (and pondering that time going by fast is not really what I want right now). It is almost exactly 5 years from my first diagnosis.

My wig- the first time round (Ella and I)

So I am now counted among those diagnosed with cancer who survive for more than 5 years. I think the clock starts again now. I realise there are a few factors that slightly obscure the real picture when we read about survivorship with cancer. Here are some of my thoughts. Firstly, when I read data on the percentage of women who survive five years from initial diagnosis, this figure includes those who are alive at the end of the five years but who have had a recurrence. Second, the clock starts ticking from the point at which you get your official diagnosis. So, if you have been back and forwards to your GP, referred, then hung around for tests and waited for results etc, etc then x weeks or months later you receive your diagnosis, your clock starts then. In practice you had cancer all along. This matters for me because this time round as I wonder how long I have actually had the cancer in my liver.

Did I have it last summer? Last October? My diagnosis was not until the end of January – but if you are vaguely looking at average survivorship – counting from when I had that fateful ultrasound is already a good few months into actually having the cancer in the liver. So does this mean that if only x% make it after 5 years, my start point is actually further back than my formal diagnosis?

None of this thinking actually makes a difference, especially as averages are hopeless when considering individual circumstance and I am not an average and do not intend to follow and average course. But I can’t help mulling over these things sometimes, especially when I realise 16 weeks has sped by so fast.

Goodbye chemotherapy, hello Cancer Healing Action Plan! Starting with getting my strength back, focusing on my 9 strategies for healing and going to Germany. The air tickets are bought, the self-catering room reserved and my appointments with the clinic confirmed.

I have to share my very proud blood count moment from my last chemotherapy. Chemotherapy gives your white and red blood cells a bit of a kicking and often people need help, with a special injection, to help support their blood count. During my first chemotherapy treatment, 5 years ago, I had very low blood counts and had these injections in between treatments to help keep it up. If your bloods are not strong enough then they cannot proceed with the chemo, and this happened to me last time round, for my final chemotherapy session. I had to come back a few days later when my bloods were better. It is something that anyone having chemotherapy fears as it can mean delaying or stopping treatment. They look particularly at your white blood count, which must be above 3.0 and your neutrophil count which needs to be above 1.5 (or at least one of these two needs to be above these points).

After my first chemotherapy session (this time round) both my white cell count and neutrophils plummeted to 3.1 and 1.3 respectively (see Photo). This did not bode well given that they usually deteriorate over the course of treatment - mine did not look like they had anywhere to go. They suggested my low count indicated that, as I had previously had chemo, my bone marrow was struggling. Again not a good sign for someone with advanced cancer who may need subsequent treatments in their lifetime. My bloods remained low for the first 4 sessions over which time we were really working on the diet, the supplements and we had introduced Avemar and importantly Moxa (see earlier blog). Since then my bloods started moving upwards and on Thursday, my 12th session, they were a relatively massive 3.9 for the white cell count and 2.2 for my neutrophils. For someone at the end of their treatment, when you would normally be rock bottom, I was pretty pleased with this outcome. It just helped us believe in our ability to influence my response. Had I simply done what I did last time during chemotherapy in 2010 (ate whatever I wanted, expected to feel worse each time and let that inevitability wash over me and took not a single supplement or alternative therapy to support my body while I was on treatment), I do not believe my bloods and energy and spirit would be where they are now. It is a pity I had to be pushed to the edge to take action. Here is a photo of my bloods and my red stars from the oncology nursing team (the left one is from after my first round of chemo in early Feb and the one on the right is from last Thursday).

The strange story of my left breast

I know that I will never really know why me, and some might think it is not worth even trying to fathom this, but when it is you, you cannot help but think about it. I am not sure if this helps with the acceptance part of the process, but it does help think about how I deal with it now. Is there anything I can do now differently which may influence the course of the cancer? What about its existence is out of my control? All speculation of course, but the story of my left breast has taken up a good amount of thinking time over the years.

After my first surgery to remove the tumour

The original tumour was under my left nipple. So close in fact that while I did not have a mastectomy, I had what was called a ‘grizoti’ – a very inelegant term. An MRI showed that the tumour was too close to the nipple to preserve it, so the procedure to remove the tumour involved removing my left nipple. I still remember the day of the operation, where the surgeon, who lacked certain social skills, took out his black pen to mark me up and, talking to himself mumbled ‘hmmm doesn’t give me much to play with’, referring to the size of my breast. The end result was a nippleless, smaller breast, as they had to remove a good deal of tissue, with a pretty ugly scar over it all. Imagine coring an apple, the scar was like this, a big round, uneven circle and a vertical line down from the middle to under the breast, and a longer horizontal scar right under the breast.

I lived with it like this for almost 3 years. I could not get round to sorting out a reconstruction, and the options were quite limited in any case. Because I had had radiation I could not have an implant, and the only other way of increasing the size of the left breast, to more nearly match the right one, would involve tissue taken from another part of my body. But this was still a technique considered to have some unconfirmed risks, given the theoretical risk of transferring, or activating stem cells (not sure which) so we decided it was not an option. So what was left involved a scar revision (to sort out the ugly scar), and a slight reduction in the right breast. It took me ages to decide to go down this route as I was worried about messing up my remaining breast and maybe losing sensation. I was told that while it was a reduction, in fact it would not look like one (given my 40 year old gentle sag), it would look more like a slight uplift.

So I had the first part of this reconstruction about two years ago. The result was great, my apple core scar was transformed and my right breast looked more like that of a younger women, and both were even. Deciding on what to do with the lack of nipple took more thought. Part of me got used to not having the nipple, it was a symbol of what we had gone through, and also I wondered if I would tempt fate, go ahead and have another procedure and then have the cancer come back.

As it is, it bypassed my breast and made it to my liver, so no worries right now of more cancer surgery anytime soon to my boobs. But there was another question around the procedure of adding a nipple that also delayed my decision making. This related to the process of making the nipple. Tattooing was inevitable (these fade and you have to be retattooed over time I understand), but the big question was how to get a nipple? The option I felt the surgeon was favouring would have involved (hold your breath), cutting my other nipple in half and sewing the top half from the right onto the left. This would give me even length nipples. Hmmm. No thank you. Otherwise, if they used the other procedure – something about pulling out tissue from the breast and twisting it (I think I made that bit up), then I would have different length nipples as they would not be able to make the left one as long as the right nipple. Decisions, decisions. So I left it and never actually had that follow up procedure, but I think I was intending to do something about it at some point. Clearly not anymore – it remains a symbol of my cancer journey.

This left breast had been tricky since the age of 14. Before I get to that story I will go through some of the factors which I have considered to help me understand why me.

Genes….

I always looked very like my Grandmother (Granny), my father’s mother. I was very proud of this and enjoyed it when, walking around the village in Wales they were from, strangers would come up to me and say ‘you must be Sybil Hulton’s granddaughter – goodness aren’t you the spitting image’. Well, this resemblance perhaps came with it a stronger set of her genetic profile than other parts of my family. I lost my Granny when I was in my early 20s to breast cancer. She had first got it in her early 60s, and had a mastectomy. In those days there were no scans, no hormone tests and she had no other treatments. She did not have a reconstruction and all us grandkids knew which of Granny’s boobs was not real – I am not sure we really understood why but as young kids we whispered about it sometimes.

Her cancer returned in her early 70s, again when scanning and diagnosis technology was far behind what it is today, and she was almost yellow by the time they worked out what was going on. It was in her liver and she deteriorated quickly from when she began to have visible symptoms. She died at home with her children and grandchildren around her. I had been doing exams at university and remember racing up after they ended to say my goodbyes. I remember waking up on the morning she died and us all gathering around her bed and saying a prayer. I know it was her death from the cancer in her liver, that since my first diagnosis, has always been in the back of my mind. Anyone visited by cancer cannot help but always have a shadow of doubt every time they get a twinge or cough that goes on too long. For me, I was always scared of the liver as from my memory of it with Granny it had just snuck secretly up, and in my mind I always associated cancer in the liver with rapid and inevitable death. We are a long way from there in our knowledge, but not that far. Maybe I had a premonition – but it was always going to be the liver.

Her daughter, my father’s sister, was my lovely Aunt Jo who I wrote about in an earlier blog. She hit her 60s, having worked all her life as a nurse and eventually nurse consultant in A&E, retired only to get diagnosed with ovarian (actually peritoneal) cancer just a few months before my own diagnosis. She died last year after an incredible fight. Through this process I have had to map cancer across the family tree to determine my potential genetic predisposition and learned through this process that, in addition to a cousin who had breast cancer many years ago, and is still alive, there have been many cases of prostate cancer. In addition my Grandmother’s mother also had breast cancer in later life, had a mastectomy and died many years later of something entirely different. My Aunt was tested for the BRCA gene, but it was negative and the conclusion was that there was likely to be a genetic link but it was as yet unknown, unidentified and her blood sample is being held in a sample bank in Birmingham so that one day, as they unlock the science of genetic mutations, it may be useful.

The main difference in my case is that unlike the 3 generations before me, I did not get it in my 60s (which I thought was young), I got it first at 39. So what else might be at play? Genetic predisposition does not mean inevitable breast cancer for many people.

So I go back to when I was 14. I was at school, chatting with a group of friends in a classroom and I can’t remember what exactly made me suddenly lurch forward, but I think someone cracked a joke and I threw myself forward, hard, as in hysterical laughter, only to stab myself on the sharp corner of one of those old fashioned school desks – right in the centre of my left breast. About the most excruciatingly painful thing I have ever done, especially as at that age when everything is growing, it is very tender in the first place. This bash developed into a small cyst which I later had removed in the local hospital. I remember the shame and embarrassment of having an operation to my breast. Having to sit and have old male doctors examine me. Having my father visit me in hospital knowing he knew I had had an operation to my breast. We are not a hang it all out sort of family, bodily functions and public nudity (even within the confines of the family home) were a no no and so to have people knowing, talking about, staring at and even touching my pubescent growing left breast is even now an uncomfortable memory.

I went back to school with a great big dressing covering my chest and for weeks walked with my arms defensively in front of my chest to protect it from accidental bashes from crowded lunch queues or bustling classroom changes. I had a simple scar that went around the nipple and over time faded but was always visible.

Roll forward a few years. The next time this breast gave me gip was when breastfeeding. I got mastitis twice, badly when breastfeeding William and then Ned. Both times the left breast and both times I could feel the blockage and heat from around the same place, near and below the left nipple. A few months after ending breastfeeding with Ned I had a piece of work in Geneva at some Technical Meeting at the World Health Organisation. I was the scribe cum report writer for the meeting and so spent two full days scribbling hard as I struggled to take down notes. After the second day I felt some discomfort in my left breast and realised I had been leaning hard, pressing down on the edge of the table I was taking my notes at, almost continuously for 2 days and my breast felt warm and bruised. For anyone who has not had mastitis, it can come on very quickly and make you almost delirious as your temperature rises. I realised that my boobs had been settling down having given up breast feeding but were still slightly lumpy, and the spot that hurt was – yes, around my left nipple.

That night, in my Geneva hotel room, I could feel myself getting slightly feverish and then to my horror noticed puss coming out of the left nipple. It was late at night and I was on my own – so rang my Aunt (Jo) with her nurses hat on, and she agreed I had to go and seek help right then as if I left it till the morning I may be too ill to navigate anything myself and there was no one obvious I could turn to for help. So I put on my coat and went to the hotel reception, with my school girl French, and asked where I could find a hospital. I was directed to a woman’s hospital and took a taxi there. It was pretty deserted , except that I could hear some mothers and babies. I found my way to a reception and communicated with a mixture of bad French and actions ‘J’ai un (point to boob) et il y a un dolor, j’ai pus (puss) – il y a pus dans ma (point to boob)’. I was directed to a room where a doctor examined me and pulled out an injection – not to inject into me but to use to try and extract the pus. I was discharged with a prescription and showed a night pharmacy (I was in the Swiss part of Geneva – and I remember the course of antibiotics they prescribed costing over £100). I got myself back to my hotel room, took the pills and made my way home the next day.

As I look back I am convinced that the initial trauma was the root of all this trouble. Early calcification and ultimately an invasive tumour. I should have gone somewhere after that event, just to get it checked out, but it cleared up and I thought nothing about it. Meanwhile I suspect what might have been early non invasive ductal carcinoma – which you can cut out and be pretty confident it is all gone, crept stealthily beyond its initial location.

This is of course my own analysis of the origins of this cancer. There is some evidence that suggests an association between physical trauma and cancer (and this makes sense). Then there is some genetic propensity. And the next ingredient in my mix I suspect is the break neck speed I have lived my life. A very happy life, but goodness me have I sped along and juggled all sorts of things in a super human way. I remember at a leaving party for one job I did, my manager at the time started her goodbye speech with ‘There is one word that comes to mind when I think of Louise, and that is fast. She talks fast, walks fast, works fast’ . And everyone, including me, laughed nodding in agreement.

Rupert watched a natural world documentary once, which compared an elephant and an elephant shrew. The elephant lives many many years and the elephant shrew only 2 years. They both have the same average number of heart beats. I am clearly the elephant shrew.

I am one of a generation of girls, born around the late 60s/ early 70s who were educated to believe they could be whoever they wanted to be. Professionally the world was a place where women finally had opportunities and could have aspirations that had simply not been available to their mother’s generations. I worked so hard, I was going to be one of these women and really I succeeded. In my professional life I ended up working in a career I have been devoted to since my late teens, working in international health and development, but the process of getting there was incredibly hard. Theoretically having opportunities to be who you want to be does not really stack up with the realities of family life. No one said that childcare and your ability to pay for this, balance the demands of home and work would be one of the most significant challenges to women progressing in a professional capacity. I had Ella early, so was a mother relatively young (25) and spent my early professional life juggling not just one baby but 4. My husband had a job which took him away frequently so I managed the logistics of job, childcare and homelife – and yes it was often absolutely punishing, I frequently felt triumphant that I was managing it. The trouble with juggling so much is that it takes very little for the whole house of cards to come tumbling down, an ill child on the day of a major presentation at work, a call from school because your child has been concussed in a playground accident.

I worked initially in Brighton while they were very young (Ella was 6 when Ned was born, at this time I had 4 under that age), I balanced a full time job while studying for a Phd, which took me 5 years to complete but I did so while childbearing, sleepless nights, exhaustion. Then when Ned was 2, with my Phd complete, I started with my current company with whom I have been ever since. This involves lots of travel oversees as I lead and managed work in Nepal, Cambodia, and more recently across Africa including Northern Nigeria and Sierra Leone. Having to coordinate travel with Rupert so that there is always one of us at home, has involved super human coordination skills and every time I go somewhere the task of developing the family timetable, in intricate detail (to avoid a child being left with no lift home, a trumpet exam missed or a non uniform day forgotten) devoured many of my waking spare hours.

I would not change my past, but I am certain that the breakneck speed with which I have lived it, and packed so much in has contributed to creating an environment within which this cancer has taken advantage. I have probably seen more friends in the last 16 weeks than I saw in any one year over the past 18. Simply not commuting to London, as I have been working mainly from home over this time, and not getting on an aeroplane somewhere has bought me hours in the day and given me space to just be with the kids a bit more. They were used to our frenetic lifestyle and as long as one of us was at home they were settled, but it has not been without its costs. Every mother I know beats themselves up about their work life balance and I have done my fair share of this over the years. I look at my gorgeous kids and how settled they are and I do not regret except perhaps reflect that maybe I should have just spread this all out over a longer time-frame, why did I need to go quite so fast.

But I am where I am. Maybe this has had nothing to do with the cancer, but I do feel like an elephant shrew. I have had a full, full happy life which I have lived and used up a fair share of my heart beats. So I am slowing it down a bit now to stretch those last ones as far as I possibly can.

Meanwhile…next on my treatment journey is the end of chemo scan. SCANXIETY sets in. My liver blood markers have all been within normal range over the last 2-3 chemos. One – GGT – which is an indicator of liver damage was 148 when I started, it is now 33. Normal range for this is 0-40 – so it is near the high end of normal range but still it has reduced. Surely this means the cancer has retreated. But if so, by how much? My liver continues to gripe, which I see as pain from cancer cell death – inflammation and the death throes of the cancer cells, but even so the fact I can feel it disturbs me. There must still be enough there to still be dying. I would like to think it was pretty much blitzed. And so the thoughts go on, round and round. What I do know is that it I need to be patient. That stable is OK. That even if you cannot see cancer it is still there and that any solution will require time and will involve focus on my cancer action plan over a much longer time scale. The scan is on the 21st and I get the results on 26th.

May 10, 2015

What is the best way to go?

May 10, 2015/ Lou Hulton

On Thursday (7th May) I had my eleventh and second last chemo. Next Friday, in less than one week I will have finished this 12 course of chemo. And then… well. Chemically induced menopause. Monthly injections, and if I tolerate these then out with my ovaries. Hormone treatment, Letrozole – pills I take at home for as long as it is effective. AND now…Germany. Through the fantastic generosity and army of love, we have nearly £40K in the bank, which is what I needed to confirm the first 12 day session at the Clinic in Gottingen, Germany. I return every 4-5 weeks, four times, for follow up vaccinations and hyperthermia to the liver and can pay for these per visit.

But it feels slightly scary to be so close to the end of my current holding pattern. Chemotherapy ties you to a pretty tight structure and routine which has its downsides, but it is predictable. Moving into the next stage should feel liberating and the younger boys punched the air after chemo eleven in celebration. It does not feel a reason to celebrate. The more I read about chemotherapy the more I doubt its longer term benefit. I have had goodness knows what poisons infused into my veins, my immune system and good cells have taken a battering and the cancer cells beaten into temporary retreat. But what we know about mestatic cancer is that it will simply regroup ready for a more aggressive come back at a later date.

I believe in the potential to heal and to stave off that come back through all the strategies I am employing; hormone therapy; immunotherapy; diet etc plus the supplements and therapies I talked of last week and some days I feel powerful and strong about my ability to influence that date. But then doubts creep in. Last week was one of those weeks. I think my fasting wiped me out and I was tired and a bit wobbly after chemo 10. Then through the week I heard of the deaths of 3 beautiful, strong, young women. From cancer. All relatively sudden. I wondered if they also believed they could influence their destiny. I know they did.

The news of these deaths followed the very peaceful death of my mother in law. She died two weeks ago. She had for many years been ready to leave this world and was impatient to do so. The day she died she was in hospital as her heart began to fail. My brother in law had spent a happy couple of hours with her chatting and she was peaceful and did not focus, as she could do, on her impatience to move on. He kissed her goodbye. Left the hospital. When he reached Kilburn on his way home he saw a missed call from the hospital. His Mum, (the kids called her Nana, she was Jane to me) had just died. The nurses simply noticed she had fallen into a coma and then died. Really a perfect death, given her fear of a miserable, nappy reliant, dependent and stressful end of life. We have since emptied her flat and spent days sorting out boxes and rearranging furniture in our own house to accommodate some of hers.

She lived in sheltered accommodation and with high demand for this her two boys had a quick turnaround to clear it all out and hand over the keys. Despite the grief Rupert has from losing his mother, there is relief it was peaceful and that she is free and he is getting comfort from having the various bits and pieces of her, embroidered cushions, vases, pictures, photos and the odd piece of furniture, around him.

The process of clearing out after the death of a loved one is such a tangible representation of the intransigence of life. We are here and then we are not. And all that stuff, all those things that make up your past and present become only important as physical reminders of you. I am a terrible hoarder, I have boxes from my childhood, I have kept every diary I have written since the age of 9, photos (hundreds, probably thousands of them and many just lots of photos of the same moment from slightly different perspectives), old books, university essays, letters. Remember letters? At the boarding school I went to from the age of nine, my life line to the outside was letters. My parents often lived abroad so I could not call or see them often in term time, so telephoning was out of the question in those days, there was no email, no internet – and letters was how we communicated. I have recently gone through the box of old letters I kept from those days. Where will they go when I am gone? They are not very exciting letters. They do not speak of great discoveries, or love affairs, of adventure or deceit. They talk about how the flowers are doing in the garden and how my Grandmother is. My mother’s in particular, scrawled in her great big writing – 10 lines to a side, tended to be filled with attempts to coordinate our family diary and my movements. Remember that time before the internet and mobiles, when you had to try and coordinate with the time delay of the postal system? So what do I do with these letters and a few attempts at needlework from needlework class that I have kept all this time, old identity cards – bus passes, old passports, young persons rail cards and the many photo box photos with friends, squished inside the box beaming out.

Seeing Jane’s remaining possessions reminded me again of the task I have to slowly sort all of this out and work out what to do with it. I am in fact happy I will have that chance. It is a chance to reflect. Look back. Enjoy memories. I used to wonder - What would be the best way to go? Suddenly, run over with no knowledge that today was your last day? Or a longer, certain but more protracted end of your life. The former gives you no option to mourn your departure. You say no goodbyes. You do not get to speak openly and freely with loved ones to communicate your deepest thoughts, and hopes and fears. To look back deliberately and laugh and to look forward and design a future for your family together, which may not include you, but which you have been able to participate in. But if killed instantly you would never even register and so mourn the fact that you did not have the chance to do all these things. And given that we simply never know what each day will bring, that thought alone is a reminder that we should really take every opportunity to do all of these things as if we might one day soon die. Because we will.

The first of the strong women, after Jane, who died last week, was Callie. I met her only once, she was a longish term girlfriend of Rupert’s before I met him. She had an eleven year old daughter and two years ago was diagnosed with myeloma (a cancer that affects the bones). We are not in contact but through the grapevine she heard about my diagnosis and only a few weeks ago she sent Rupert two books I have mentioned in my blog; Remarkable Recovery and Radical Remissions. She had I am sure from her sharing of these books, investigated, as I have, alternative ways to help manage her cancer and probably, like me, felt hopeful she could. Rupert exchanged a few texts more recently and knew she was complaining of a cold. Then last Saturday he received a call from a mutual friend to say she had died. It has been an emotional week for Rupert anyway with the loss of his mother, and this death was hard, not only as the loss of someone he once loved and of a mother and woman too young to die but as it reminded him of the unpredictability of this disease. He found it hard telling me as he worried it would destabilise me for this reason, which to be honest it did a bit. But I cannot be shielded. I have to absorb and manage.

The next death we heard of last week was of Samantha – a 28 year woman from Brighton who I came to hear about through cancerispants as she also had been fundraising to help her get treatment in Mexico. There was due to be a fundraiser in our local Exeter Street Hall. And then came the news that having returned from Mexico she died of a lung infection. She had cervical cancer, two young children and she had from what I have read worked during the short time since her diagnosis to raise awareness of cervical cancer during pregnancy, rare, but in her case not recognised. Another strong woman using her voice in her last months of life. A sudden, if inevitable death. http://www.mirror.co.uk/news/uk-news/tragic-young-mum-whose-cancer-5641656

Finally, through kind friends who have shared #cancerispants I came across the family of Amy Watts. She died on March 5th from colon cancer. Again young (37), vibrant and hugely loved. Her family and friends had launched an incredibly successful campaign to raise £100K in just 15 days to get her to Leeds from LA, where she was living, to have an operation which had the potential to extend her life. They raised the money needed in this very short space of time but Amy did not make it and died before she could have the surgery. Her family very kindly donated £4000 of this fund to cancerispants to help me get treatment. The campaign was called 'Hold Amy’s Hand' and I went to look at the website and saw the photos of this beautiful, alive, happy person surrounded by loved ones and tried to absorb that she was no longer there. Her death was so sudden and I can imagine the hope her and her family felt when they found a surgeon willing to operate and raised the funds so that they could do this and imagined the hole that was now left. www.holdamyshand.com

So it was a week of the reality of life and death. The loss of a loved family member, a woman of 84 who was ready to go and of 3 young women with futures and presents that were full of potential and life, not ready to go. Part of my journey, if I am honest a very large part of my journey, is about acceptance. About conquering fear and living and relishing every day. As Ella frequently says to me…’is everything OK right now? Then everything is OK’. When I feel physically strong it is so much easier to keep this in the fore of my mind and to smile everyday. But last week not only did I feel rather weak and tired but the news of the above deaths, almost daily, played heavily on my mind. Perhaps it was in fact the emotional impact of this that made me more tired and fearful.

I return to that question I used to ask myself occasionally – what is the best way to go?

Staff at Standford juniors hold a Cancer is pants fundraising day and raise £550!

I suppose I still could suddenly get run over but I am more certainly on the longer more protracted path toward death. Along with everyone else. My lens has been given more focus and I have been kicked into action to appreciate this fact and take advantage of it. And that is what I am doing. I am enjoying looking through those boxes of memorabilia I have hoarded. I will organise those photos, clear out that junk, write things to people I love that I might never have written and on top of this enjoy the massive wave of love and support I am getting from almost every direction. Family, friends, friends of friends, neighbours even strangers. We have lived in the same part of Brighton now for 20 years and I have visited the same shops, cafes, the kids have all gone to the local schools (Stanford Infant and Stanford Junior), Cardinal Newman and BHASVIC - all within walking distance and the local nursery Blueberry, which all 4 kids went to. In my time in Brighton I not only lived as a mother, hanging out in the local parks, playing on the beach, walking on the downs, I have shopped at the same shops for all this time, meeting and greeting the same local owners over many years. I have worked at the local council (as the local demographer and head of research and consultation many moons ago), with the local Primary Care Trust (when that existed – as a Non Executive Director); with the local maternity unit as Chair of the Maternity Services Liaison Committee; I have worked with the local schools as governor at Stanford Infants for 10 years and now as Vice Chair at Cardinal Newman. I even had a small column (called Figuratively Speaking) in the Argus. When I arrived in Brighton just after I got married I knew no one. But over these past 20 years I have built up such a wide network of friends and colleagues and acquaintances – people I have met so often in passing, in shops, on the way to school that I feel I know them. And this experience is reverberating in cancerispants. All these people across all the paths and networks I have built in my time in this city have woven a huge blanket of love and support around me – that daily, something happens that lifts my spirits. It is honestly almost impossible to feel sorry for yourself with this all around you.

Staff At Blueberry nursery hold a cancer is pants day.

Our local nursery Blueberry, held a pants on head day. Stanford Infants shared my story with parents. Stanford Junior held a cake sale and teachers, who for so many years I met about one child or other or at school performances and assemblies posted this picture for pant support. Cardinal Newman are cooking up a non uniform day to support cancer is pants and BHASVIC have donated use of their sports hall for the Zumbathon Fundraiser. Friends are organising marathons, a sponsored cycle ride from up North, a walk in the Downs with pants, a Pants Party and a garden party. (Thank you Jo, Andy, Harriet and Toby) The Lavender Rooms are having a collection on 16th May, our local newsagents, where William is a paper boy, are holding a raffle today with the prize of a Build a Bear bear, all dressed in pink with pink pants on her head. Friends of Ned’s held a cake sale and turned up at our house to hand over the amazing £89 they had raised (thank you Rifka and Kate). We are so close to reaching the £50K. With luck, exceeding it, so that I have war chest for any relapse when I am unlikely to have much time to make a decision about treatment.

In addition to this I receive flowers, meals, lovely messages of support, offers of help to improve my knitting technique and speed and more recently Rosen Treatment from a gorgeous friend who is helping me address that spiritual and emotional release, the strategy from Radical Remissions I have made least progress with. And every day my spirit grows and so does my determination. But also my acceptance. All of this is something so powerful and exposes the humanity around us in a concentrated way which I am not sure, even had I lived a long life, I would have ever felt so acutely.

Going back to my opening question – what is the best way to go? I did spend some of last week, clear that I appreciated the privileged of some time. And the fear I realise came from the reality for these 3 women. A death, that even within their own certainty of the inevitability of death, which was still too soon. Far too soon. And I imagined myself in a situation and realised time was closing in, and all I could think of are thing things I had not organised. Strangely like preparing for a baby – all that planning and preparation so you are ready to accept and manage the new life.

As the issue rolled around my head I experienced a couple of more ridiculous moments, watching films (most films these days have their fair share of death and these are frequently sudden and unexpected for the character, not for the audience). Every time I saw someone shot I found myself thinking, ‘well, at least I am not likely to die like that’; or an improbable disaster – where the character wakes up, a normal day to find themselves buried in mass of rubble from building destroyed by some missile or bomb, or a boat capsized in a the middle of the ocean in a tumultuous storm. In fact the devastation of the Nepal earthquake, a country I know and love where I have many friends bought the question of death in close focus. All those people who woke up that morning not knowing it would be their last day. All these deaths, real and fictitious confirmed that that the answer to my question is just that – I am fortunate for some warning and I will take advantage of that.

May 04, 2015

An Ordinary Day

May 04, 2015/ Lou Hulton

Fight Cancer from every angle

After www.cancerispants.co.uk went live I was contacted by many people either with an advanced cancer or who knew someone who has wanting to learn more about the approaches I was using to manage my own cancer, and to send some of their own strategies also. This particular blog is going to focus entirely on the approaches I am using which I hope will be helpful in some way for others in my situation.

What my research to date suggests is the importance of fighting cancer using a combination of approaches. Cancer is clever, it learns to recognise its foe and mutates and creates resistance – a bit like HIV. Single therapy approaches are therefore not good for cancer. My approach (please do watch Surviving Terminal Cancer if you have not already http://www.survivingterminalcancer.com/) is therefore to throw as much at it as possible, as long as what I am throwing at it has some credible evidence base and is not harmful to me. I intend to change the regime I use now in a few months to confuse it a bit in case it gets used to the current barrage and then change back again a bit later.

This is messy for science. If you want to work out definitively what exactly works and why, if it is taken in combination with other things then how can you tell what makes the difference? Perhaps on its own it would not have the same impact as in combination with other products. How then, if you don’t know exactly what works in what combination, can you advise people what is the optimum combination to take?

This is where you need to make sensible judgements for yourself. I am not really sure what of the below is likely to be the most effective or in what exact combination, but I have made a sensible judgement in light of the evidence and confirmed from the research that none of what I am doing will do me harm, indeed has good evidence it will help - reducing inflammation, stimulating cell death, supporting the immune system etc.

An Ordinary Day

All day

Diet – Vegan, no alcohol, no refined sugar, reduced carbohydrates, no coffee/black tea.
Organic produce where possible.

Daily

Clean water – reverse osmosis system
Green tea
Aloe vera
Mix of Superfoods from this list: bee pollen, hemp powder, chia seeds, goji berries, flax seeds, nuts, seeds and more nuts, organic blueberries and raspberries and raw dark chocolate
Flax oil (still to start this)
Tapping/ lymphatic brushing

First thing in the morning

A glass of water mixed with lemon and a small plate of sauerkraut (!)

2-3 times a day

Juices – vegetables only (carrots to sweeten)

Before getting up and last thing at night

6 IP6 Gold capsules and insolitol
2 super artimisinin (3 times a week only)

After breakfast and after supper

Before sleep

Moxa

2-3 times a week

Bath with Epsom salts
Yoga

Should be 5 times week

Exercise – not walking dog exercise – glowing/sweating type exercise

At least once daily

Meditation/relaxation/mindfulness practice

Occasionally

Oncology massage

2 fish oil capsules
6 chlorella
6 spirulina
2 milk thistle
2 curcumin
2 kelp
2 selenium
1 zinc

Mid morning and mid afternoon

4 avemar pills

When I can stomach it

Wheatgrass

Shortly before chemotherapy

Acupuncture

2 days (chemo day and day before)

Fasting

Am considering post immunotherapy and post chemo

Cannabis Oil / Intravenous Vitamin C infusions/ BIOBRAN/ INDOLE 3 CARBINOL / UVB BLOOD IRRADIATION ALONGSIDE INTRAVENOUS OZONE TRANSFUSION/ GcMAF / Castor Oil Packs/ Coffee enemas/ salvestrol/ Rosen therapy/ Low dose Naltroxate/ Rosen Therapy

Therapy and Treatment (more detail!)

Diet – Vegan, no alcohol, no refined sugar, reduced carbohydrates

My diet was the very first thing I changed. Even cursory research indicated that changing to a plant based diet was a sensible first step to make. I found it incredibly confusing at the beginning to decide which diet I should follow. Some people swear by raw diets for example. In the end I read the books by Professor Jane Plant and she makes a credible case for people with ovarian, breast and prostate cancer to exclude diary (www.janeplant.com/books.asp). I know this is controversial but the case sounds reasonable and excluding dairy is not actually very difficult.

I was slave to my morning black tea with milk and a daily latte but I stopped these overnight. I did not find this hard given the size of the stakes. The hardest part of changing my diet has been having to learn about vegan cooking, restocking my cupboards so I actually have ingredients to make some of the delicious vegan recipes around and finding ‘treats’, foods I really look forward to, to replace my old favourites. Food is very ritualistic, you love certain things not just because they taste nice but for the ritual. I needed to create new rituals. Small Batch Coffee near where I live in Brighton was my favourite place for a daily latte. I now go for an organic green tea (can’t say it quite matches up but it is good enough) www.smallbatchcoffee.co.uk .

There is a book written in the mid 1990s called Remarkable Recovery by Caryle Hirshberg and Marc Ian Barasch, they investigated cases through history (since early 1900s) of cases of unexplained recoveries to determine what factors might have contributed to them. This is a quote from the book ‘Researcher Harold Foster, who reviewed 200 cases of remarkable recovery, found that nearly 88% reported making substantial dietary changes ‘usually of a strict vegetarian nature’ prior to their healing’.

We have had enormous support from friends and neighbours who came in to fill the initial vacuum. We were totally lost and I had 3 miserable weeks with Ella and I trying to work out what on earth to make. Friends have bought round delicious vegan creations, expertise, ideas, I have been sent and recommended vegan cook books and recipes and weekly two amazing friends come round and spend at least 3 hours in my kitchen cooking 4-5 dishes for both myself and for the family (thank you Jeff and Diane!). Changing your diet so dramatically has an immediate knock on for the family and family meals with two dishes being served up. We are working on finding recipes that the boys will like so we can reduce the cooking effort and keep eating as a family.

Among the most useful we have found to date are: Deliciously Ella by Ella Woodward; the Able and Cole Vegetable Box Companion and we are looking forward to using Hemsley and Hemsley which we have not bought yet but have been recommended this by many people.

Sourcing organic produce is relatively easy living in Brighton. If you are going to go vegan I am not sure there is a better place in the UK to be. Ella and I live in Infinity Foods www.infinityfoods.co.uk and a friend told us if we order in bulk we can get a discount. It’s a bit tricky as it is right in the middle of town so we generally have to get a taxi home as we are so overloaded we cannot get up the hill after a weekly shop. We also get an organic box delivered weekly and I increased this to an additional juicing box to make sure we had enough fresh organic vegetables to keep up with our daily juicing regime.

In terms of eating out – this also has also been made much easier living in Brighton and I will write about some of the best places we have found in a later blog – but sometimes thinking up and cooking vegan recipes is a bit of a trial (Ella does most of them!) – I would like to use the excuse of chemotherapy but really I could probably cook more myself if I put my mind to it – however hard I try cooking has never excited me and I am not very good at it at the best of times – so eating out and trying new recipes that someone else has cooked is a luxury especially when my taste is all over the place and I am starving but don’t know what I want to eat. Before fasting and after fasting I treat myself to a meal out somewhere and eat every single bit of it up – as we try and fatten me up a bit. Coconut oil is now a staple for helping with this. Mixed in porridge, rice, soup, smoothies. Avocados are also good for this.

When I am stable I will consider eating small wild fish (large ones can have heavy metals) and organic fresh water fish occasionally

I may have the odd egg and if we can find a really nice organic red wine I may have a small glass very occasionally. The odd cup of organic coffee is also something I will introduce once I am stable/in remission.

Just one thing to add to the above – and that is the list of the Dirty Dozen and the Clean 15 – this is a list of 12 products which have higher levels of pesticides etc and therefore we absolutely avoid unless organic. The Clean 15 are those which have the lowest levels recorded and when we have no choice we are happy to buy non organic. This year the Dirty Dozen are as follows

Apples, Peaches, Nectarines, Strawberries, Grapes, Celery, Spinach, Sweet bell peppers, Cucumbers, Cherry tomatoes, Snap peas (imported), Potatoes

The "Dirty Dozen Plus" includes: Hot peppers, Kale / Collard greens

The Clean 15 are Avocados, Sweet corn, Pineapples, Cabbage, Sweet peas (frozen) ,Onions, Asparagus, Mangos, Papayas, Kiwi, Aubergine, Grapefruit, Cantaloupe, Cauliflower, Sweet potatoes

http://www.mindbodygreen.com/0-17624/12-fruits-veggies-with-the-most-pesticides-2015-dirty-dozen.html

Lemon water and sauerkraut

Every morning I have a glass of water with lemon juice in it to alkalise my body and then a plate of sauerkraut – fermented foods are very good for the good bacteria in your digestive system. There is no good if you eat very good food but barely absorb any of the nutrients and vitamins.

Clean water – reverse osmosis system

I never drink water from a plastic bottle if I can help it or unfiltered tap water. I have a BPA free water bottle and we use a Brita filter at home but I have been advised that this does not get all the toxins and oestrogens out and with an oestrogen receptive breast cancer I need to do this, so we have just bought a reverse osmosis system which is sitting on my kitchen floor and needs to be installed. It will give us an extra tap on our main sink in the kitchen for drinking water and for water we will use for cooking.

Juices – vegetables only

We took a while to work out exactly what sort of juicer we needed. We now have a Matstone Juicer – this is a masticating juicer (life started getting very expensive once we started building the list of supplements and modifications and buying a piece of kit like this starts to hurt but it is an absolute must). Masticating juicers don’t produce heat when they process the vegetables – non masticating ones do and this destroys the enzymes and nutrients in the vegetables.

We stick to only organic mainly green raw vegetables with a small organic carrot to sweeten. This usually involves Kale, cabbage, cucumber, celery, fennel, spinach, some wheatgrass sometimes, beetroot and ginger. Ella makes me at least 2 a day and if we have time 3, but it is pretty hard to keep up and actually get anything else done so we use the bottled juice Beet It, organic beetroot juice, and sometimes we go to 42 Juice (www.42juice.com) in the Lanes in Brighton where you can buy a ready-made cold pressed organic green juices and superfood smoothies.

However hard I try I simply cannot like these juices, in fact if I am honest I hate them. I am sure this is not good for digestion and I try to like them but really they are not nice. Ella literally stands over me to make sure I drink them all down. But they are liquid nutrition and central to my diet and we are finding combinations which are less bad.

You can add spirulina or turmeric and black pepper (helps with absorption of turmeric). Turmeric contains curcumin and it is best to take the purified extract…..’curcumin can block cancer causing enzymes and interfere with the development of new blood supplies; in other words it is anti-angiogenetic. It is also anti-inflammatory and helps maintain the health of the liver’ (Alternative Medicine Definitive Guide to Cancer – Burton Goldberg et al.)

Green tea

Green Tea – ‘a number of studies have shown that green tea helps protect against a variety of cancers…it is now suspected that EGCG a powerful antioxidant may be the reason for its effectiveness. EGCG binds to a protein found on tumour cells and dramatically slows their growth..’ Cancer Survivors Bible. The goodness is in the green tea leaf and we use Matcha green tea which is a finely ground powder made up of green tea leaves. I also love Clearspring Organic Genmaicha tea which is a Japanese green tea with roasted brown rice.

Aloe vera

Aloe vera – ‘helps the body fight infections and malignant cells. It is also a detoxifier….it has demonstrated a strong ability to enhance the immune systems response to cancer…’ Cancer Survivors Bible

Mix of Superfoods from this list: bee pollen, hemp powder, chia seeds, goji berries, flax seeds, nuts, seeds and more nuts, organic blueberries and raspberries and raw dark chocolate

Superfoods – we bought a small booklet from Neals Yard which focuses on a range superfoods and describes in good detail what their various properties and benefits. We bought the ones listed so that we have them to hand and Ella finds creative ways to include them in everything she prepares.

Flax oil (still to start this)

Flax oil – about 60% of the composition of flaxseed oil is alpha-linolenic acid (ALA) one of the omega 3 essential fatty acids our bodies need for good health. Needs to cold pressed (not used in cooking). I find it pretty disgusting and difficult to find ways to incorporate in my diet.

6 IP6 Gold

I spoke about IP6 Gold last week.

2 super artimisinin (3 times a week only twice daily)

Artimisinin, this product needs a bit more attention than what I am going to give it here now, but I will come back to it in a subsequent blog. It is basically wormwood extract, a herb which has been used by the chinese for thousands of years to treat malaria. It was ‘rediscovered in 1970 and has slowly returned to clinical use, especially for drug resistant falciparum malaria, but also for treatment of most cancers.

Artemisinin contains two oxygen atoms hooked together that break down in the presence of iron, by creating very reactive free radicals that kill malaria parasites and cancer cells. Both cancer cells and malaria parasites sequester iron, accumulating as much as 1000 times what normal cells store.

Giving artemisinin to people with malaria or cancer results in destruction of these abnormal cells and leaves normal cells unaffected. Artemisinin is a cancer bomb!’ http://www.naturalnews.com/033182_artemisinin_cancer.html

I take 2 capsules of super artimisinin in the morning and in the evening with the IP6 Gold on an empty stomach. But I only take this 3 days a week following advice from the Professor of Oncology I visited when researching Dendritic Cell Therapy.

2 fish oil capsules, 6 chlorella, 6 spirulina, 2 milk thistle, 2 curcumin, 2 kelp , 1 selenium, 1 zinc (twice daily)

There is a brilliant book called The Cancer Survivor’s Bible by Jonathan Chamberlain which we bought at Neal’s Yard (referred to above). His wife died of cancer and after her death, following only standard treatment – surgery, radiation and chemotherapy at that time, he began to investigate what else they might have done. This is a very balanced book in which he brings together evidence on many, many products and approaches and summarises it. We used this to initially to decide which supplements I should take. Milk thistle is important for the liver, which in my situation is critical and I take these morning and evening. The only supplement my oncologist advised was fish oil, I take 4 or these (2 in the morning and 2 in the evening). I also take 'super curcumin', the the active ingredient in turmeric. The supplement is very expensive (about £17 for 30) so Ella and I decided we would make our own. We set up our own Breaking Bad factory at the kitchen table. We bought a big bag of organic turmeric, mixed some of it with black pepper, bought some vegan tablet capsules and filled them.

This involved lots of powder, tablet capsules, chop sticks to pack the capsules and a small spoon. We were pretty proud of ourselves and for the first few weeks I took our home made version, until someone pointed out that it is the curcumin in the turmeric which is the active ingredient and that is what we really needed.

4 Avemar tablets (twice daily)

We were recommended Avemar by a friend who lost their young to a glioma . In the course of their battle they came across this from colleagues in the USA who swore by it for many reasons but mainly as a means of supporting the body through chemotherapy. I started it just before my 5th chemotherapy, my white cell count and neutrophils had been very low for the previous 4 chemotherapies and I had felt incredibly tired. After one week of this product I felt like a new person and my blood count after the 5th chemotherapy was higher than it had been since I started. This may have been the result of my changed diet kicking in but I am convinced it is contributing to reducing side effects.

This is a description of it by Johnathan Chamberlin (Cancer Survivors Bible) ‘ it works in a number of ways. Firstly it radically reduces the ability of cancer cells to utilise glucose…it also helps the immune system to identify cancer cells…all the indications are that it would be a valuable support to any anti cancer regime’.

You can source avemar only directly from the producer http://www.avemar.co.uk/ . It comes in either tablets or a powder form. I tried the starter pack which gave you a sample of both so you can decide which suits you best. The tablets are quite big and for my size I need 8 a day, but I find swallowing tablets thankfully quite easy. I tried the powder form and thought it was utterly disgusting. I have recommended this to my father for his anti cancer regime after colon cancer last year and he prefers the powder as he cannot swallow that many tablets. It is quite expensive about £100 for 6 weeks supply (more expensive if you are bigger and need more a day).

L glutamine

This is often recommended to prevent/protect against neuropathy, a common side effect of the chemotherapy I am on (placitaxel) which can result of loss of sensation in finger tips and toes.

Glutamine has been shown to up-regulate nerve growth factor in animal models and it is thought to have similar effects in humans.

L-glutamine is recommended in a Guide for Integrative Oncology for Clinicians for the prevention and co-management of chemotherapy-related neuropathy in oncology patients. It has been shown to be safe at oral doses of 10 g daily in oncology patients.

http://depts.washington.edu/integonc/clinicians/spc/l-glutamine.shtml

I have read testimonies of women on this chemotherapy swearing by this supplement. I have no loss of sensation at this point, three quarters of the way through. I take about 4 grams a day (a heaped teaspoon of the powder version). I prefer the pill version but have run out. When I restock I will order the pills.

Moxa

This was recommended to me by my acupuncturist. I am going to have to cut and paste a description of it as I am not sure how to describe better. Ella or Rupert spend up to 30 minutes a night burning a Moxa stick (you can buy these on-line easily) on points on my back and one on my leg which the acupuncturist marked on for us.

When they wash off they both try and guesstimate where these marks are using a burn mark from a Moxa accident, when the ash fell off directly onto my back leaving a relatively big burn mark. This has been quite useful in the end as they can work out the other points using the burn mark as their navigation point. We used it to help improve my white cell count and neutrophils which were so low at the start. We started this the same week we started Avemar and after a week my bloods had significantly improved – so I am not sure which of the two had most impact on the bloods – but as I felt so much better and my bloods were improved I am simply continuing both. We were rather slack with Moxa over the past 2 weeks since my last chemo and yesterday my bloods came back lower than they have been for a while. So we have now more of an experimental situation – we will do it every night religiously and see if there is a change in the bloods next week. If there is it will give me more confidence in the specific role this has played. Here is more about how it works. The downside is that it is time consuming and you need someone who has the time and dedication to do it every night.

Moxibustion or Moxa for short, is an ancient form of heat therapy that originated in China. Moxa uses the ground up leaves of the medicinal plant Mugwort (Artemesia vulgaris). These are either rolled into sticks (indirect Moxa: as practiced by Green Alchemy) or the powdery substance is made into tiny cones and burned on ointment or a ginger slice(direct Moxa) During Moxa treatment, the smoldering Moxa stick is held a few centimeters away from the skin, above the acupuncture point.

Burning Moxa has a distinct aroma which many people find very relaxing. The essential oils in Mugwort have a significant effect as a form of aromatherapy or medicinal incense.

Moxa in general has more or less the same efficacy as acupuncture. However, medical experiments have shown that Moxibustion exerts much wider and stronger effect on overall biochemical changes in the body than acupuncture. For example: it increases the production of white blood cells. The white blood cell count begins to increase immediately after direct Moxibustion treatment

Moxa increases the production of red blood cells and haemoglobin. Clinical research validates that subjects who had an average haemoglobin ratio of 78% just before direct Moxibustion show a steady increase in haemoglobin production reaching a peak of 90% in eight weeks

Moxa improves the overall blood and lymph circulations and the capacity to produce antibodies. Due to rather intense heat of burning Moxa over acu-points, impulses from nerve endings of the skin cause the dilation of capillaries (small vessels) to increase the blood and lymph circulations in the entire body.

http://greenalchemy.org/moxa-st-36-secret-longevity

Bath with Epsom salts

Epsom salts are full of magnesium. Epsom salt baths (20 minutes, three times per week) are a simple, inexpensive way to get magnesium into your body.

It helps release toxins from the body and it ‘helps ease stresses and strains’ so is generally relaxing. You can buy bags of it from most pharmacies and it is not expensive, but you need quite a lot per bath

http://articles.mercola.com/sites/articles/archive/2013/04/21/breast-health-tips.aspx

Tapping/ lymphatic brushing

The skin is the largest organ of the body and is responsible for much of the body’s daily detoxification. Tapping/ brushing the skin is a way of helping the lymph system to eliminate toxins. It is meant to strengthen the immune system, stimulate the glands and improve digestion. It is also very therapeutic. I am not sure if brushing and tapping is the same thing, but reckon they achieve the same. I mainly use tapping starting from my scalp, tapping behind my ears, my chest and sternum, up my arms, down my sides and up and down legs. I do morning or evening and sometimes both.

Yoga

I am relatively new to yoga but have learned enough poses that I can do a routine on my own. This helps me calm my mind, sort out my breathing, support my digestion and detoxification, stimulate my lymph system and generally energise me. I was much better at getting up around 6.30 to do this (when the birds are singing and night meets day) but have been less good at this early get up recently – it is hard on school days but at weekends I try to. I aim for 3 times a week.

Exercise

I should really be doing more vigorous exercise more often. I do try and walk and as a family we try and walk on the Downs or seafront regularly but in reality I do not often get my heart rate up. Partly I think I have not quite the energy from chemotherapy but actually I know it would make me feel better if I did. So the task is to build this in and make sure it really is a part of my weekly routine.

Exercise like this is good for lots of reasons – including that it moves the lymph around, helps get lots of oxygen into me via the lungs and gets me breathing out lots of toxins through my lungs as well as through getting rid of toxins through sweat, it naturally releases endorphins which boost the immune system and it generally makes you feel pretty good

Meditation / Relaxation / Mindfulness practice

I try at least once a day to either listen to a relaxation tape I have or to meditate (I am not very good at this yet) or to use some of the mindfulness strategies I have been taught.

Acupuncture

I have had acupuncture before every chemotherapy so far. Research suggests that it is helpful in relieving some symptoms of cancer or the side effects of cancer treatment.

The main areas of research into acupuncture for cancer are chemotherapy related sickness, tiredness and cancer pain. I cannot tell if/how this is working to support side effects but I started this very early on as it has been recommended to me by so many people including the oncology nurses.

Honestly I am not sure I can distinguish between what is making the most difference but as I feel so strong these days I am unwilling to give any of it up as whatever the combination it seems to be working. After chemo I will cut back as it is quite expensive.

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/therapies/acupuncture

Oncology massage

Occasionally I have had a massage from an amazing woman who specialises in oncology massages. She helps stimulate my lymph system and help with detoxification as well as to simply relax me. I found this really helpful, especially in the early weeks when I was most distressed and coping least.

Fasting

I wrote about this in an earlier blog. I have just had my 10th chemo and fasted the day before and the day after and have to say I do not enjoy it one bit. It is for starters very boring not eating and it makes me feel rather weak. I have 4 drugs as pre meds before the chemo including piriton and steroids and having fasted I think they hit me even harder so I basically just spent the rest of the day in bed not really being able to focus on much. But today I can eat and I feel pretty good. The best thing about a voluntary fast is the day after!

Other therapies I am considering for the future

I will leave it to another blog to look at each of the following: Low dose Naltroxate /Cannabis Oil / Vitamin C infusions/ BIOBRAN/ INDOLE 3 CARBINOL / UVB BLOOD IRRADIATION ALONGSIDE INTRAVENOUS OZONE TRANSFUSION/ GcMAF / Castor Oil Packs/ Coffee enemas / salvestrol

Phew !! – this has been quite an information overload – and I’m not finished yet. I will be using other treatments alongside my hormone treatment and dendritic cell. These include hyperthermia treatment to the liver. I will also have a chemo sensitivity test (known as the Greek test) – more on this later. Other treatments I will consider in the future include IPT (Fractionated Metronomic low dose targeted chemotherapy with Insulin) where 10% of chemo dose is given to you alongside Insulin. These are made possible because of the amazing generosity of people who have donated as these are not available in the UK.

Fundraising

The total steadily rises and is now around £34,000. WOW! I am booking my flights for Germany today. I have heard, through a number of channels, of people who have themselves had this treatment in Germany all with very positive stories, so I am hopeful. There is an option to go to Mexico but this is something I will look at if/when I relapse and hope that if we surpass this target for Germany I can build up a war chests – as if I relapse I will need to act fast. At least this time I had a window to fundraise.

The cancerispants campaign has really taken off and I want to send my love and thanks to everyone. Juice FM, Heart radio and today the Argus have covered the story. My face and those of my gorgeous children are peaking out on the front page. This has been amazing coverage. The Argus article is great and is good balanced and informative coverage. The Daily Mirror on-line also interviewed us and covered it. I do hope that through this page I can help raise the profile of advance cancer and this coverage does help others as well as attracting funds for my own campaign.

Xxx

April 26, 2015

A thank you ROAR for your generosity and love!

April 26, 2015/ Lou Hulton

April 24, 2015

Every Boy Loves His Mum – The Tobjizzle phenomenon

April 24, 2015/ Lou Hulton

The cancerispants campaign may look pretty slick, but really we have pulled it all together in double quick time. We did some thinking about how we would try and get the word out but what we could not have imagined (or even hoped for) is that it would be picked up by a cool young you tuber with hundreds of thousands of young subscribers, many of whom are teenage boys and young men. I am not even sure we would have considered aiming at this sort of well known person to help raise the profile of the campaign. But this amazing 22 year old happened to see a tweet shared by Tyler, a friend of my 14 year old son William. This is a story of chance, luck and love.

Tobjizzle was getting close to his 900,000th sub (subscriber to you and me) when the below message landed in his twitter feed.

He retweeted it. At that exact moment, Tyler, who happened to be at his house on the xbox with William, who was at our house, saw the retweet and told William that his tweet had actually been retweeted by Tobi. We managed to follow him immediately and send a tweet to thank him for sharing Tyler’s. Seconds later Tobi sent us a private message. He said he had been thinking about what to do to celebrate his 900K subscriber and this had caught his eye. I have copied the messages (I am sure he won’t mind). He said he has been blessed to have had his parents for his whole life and he would not be where he is without them. He wanted to do what he could to help Ella keep her Mum for as long as possible.

He immediately donated £1000 and asked if we would be OK with him dedicating a video to draw attention to the campaign to help us reach our target. And that is how the Tobjizzle video https://www.youtube.com/user/TBJZL came about.

Within seconds of him posting it our gofundme inbox went absolutely mad and it stayed that way for about 24 hours. Donations came pouring in, mainly between £0.50 and £5/£10 – but lots and lots. Tobi added another photo yesterday to encourage more donations and photos.

These were followed by lots of photos of young boys and men with pants on their heads. This was trending last night on instagram (which I don’t have but William showed me).

What stands out so powerfully is not only the influence that this young man has on his many followers but that one thing touched all those who donated – their love for their mother.

‘I'm so sorry to hear about your mother, I know I would be devastated if this happened to my mum, she is 50 this year and I love her to pieces. I hope you are able to raise enough money to get your mum to Germany to have treatment :) I saw this from tobi from the side men in one of his videos and was upset by it so I hope my donation helps’

For most kids the fear of losing their mother is deep rooted. Fairy stories are full of children whose mothers have died, grasping the imagination of generations of children with tales of the unimaginable. And boys (like girls) love their Mums. What touched these kids is the idea that any family might go through losing their mother. The response to Tobi’s message about his love for his parents was an outpouring of love by teenage boys and young men for their mothers. Such a wonderful response.

The other thing that the messages we received show is that cancer touches everyone. It is always somewhere lurking in the background and often closer to home. So many, many, people’s lives rudely interrupted. If a mother’s life is interrupted, life for their families are never quite the same again. Cancer is a family affair.

In addition to messages of support for us as a family, from people telling us to be strong and donating in memory of a loved one, I have received private messages from people from all over the UK with advanced cancer or with a loved one with advanced cancer. It confirms what I have recognised from my journey so far – that advanced cancer needs a bit more awareness and focus. Hundreds of thousands of people are diagnosed with an advanced cancer in the UK and they and their families are thrown into a mass of emotional, practical and financial uncertainty as well as a maze of care options and decisions. They live in a strange limbo space. They have been given a best before date of sorts, but as treatments develop or depending on how they respond to treatments, this date can shift backwards and forwards unpredictably. They have to navigate the day to day reality of this diagnosis, deal with the physical impact of illness and treatment, manage their own emotions, and more difficult still help manage those of their loved ones.

On top of all of this, as you come to the end of the road with standard treatments, doctors are currently unable to support you in decisions about what other ‘different, alternative’ treatments you might try, so if you do have the energy to try and find out more by yourself you are left overwhelmed by the information you can find and unsure of what routes to take. None of the treatment options you come across are without cost and some, as you know from the treatment I am seeking, are expensive. You feel out on a limb making these decisions on your own. The result is that many people with advanced cancers are not benefiting from many promising approaches which can contribute to improving the quality of their life and extending it. The recent Saatchi Bill tried to address this – The Medical Innovations Bill. Maurice Satchi lost his wife to ovarian cancer. After a public consultation, which saw over 18,000 ordinary people, professionals and others engage and support it and only around 100 oppose it, time ran out as Parliament came to close before this upcoming election.

I am wondering what happens next? Does it get a second chance? I am going to find out more. The Bill looked to give the medical profession more space within the regulatory framework they work within to try innovative therapies for their terminally ill patients when all standard options run out. Sounds just what we need. I am going to find out what needs to happens next. I will blog more on this Bill as I find out more about what it offered. Maybe cancerispants can help keep the pressure up!

Here are some of the many messages gofundme.com/cancerispants received after TobiJizzle’s video (thank you to everyone who donated - we are planning a thank you surprise as we hit half way!):

Cancer touches everyone and boys love their Mum

Lost my Dad to cancer almost 6 years ago so I'm more than happy to do my small part, particularly if it helps to prevent someone else losing a parent

kick cancer. I lost my grandpa to cancer in 2008 and i would love to help you guys. Stay strong!!

I lost my mum to breast cancer when I was 10, 8 years ago. this is all I can afford right now, hope you can beat cancer again and you enjoy many more years with your mum!

Hope this helps, I know it's not much but it's something. I'd be so sad and miscible if I lost my mum, I don't know what I'd do with out her, so I know how much it would mean to you. Good luck! ❤️

Good Luck. My mum overcame this terrible disease and i hope with all my heart your mum can too. Stay Strong.

Hope it all works out, best of luck. This inspired me a lot

Thankfully never had a close family member go through this disease, but saw a friend's mam suffer through it. More than happy to help someone spend more time with theirs

Hi I am donating because I recently lost a close relative to cancer and I hope this small amount can make a difference to you and your family... #CANCERISPANTS

I know how much I love my mom so I just want to see you spend more time with yours.

I've been through this myself and luckily my Mum is still with me. All the best!

My mum died a few weeks ago having not had time to go abroad to get treatment.. Good luck to you all! X

Ode to Tobjizzle

I hope you reach your target. Big thanks to Toby(tbjzl) for getting me to donate.

Hope this helps in some way here because of tbjzl good luck in the future!

Good luck - Hope TBJZL's Callout brings enough support and money for your mums treatment

Tobi (TBJZL) sent me here. Such a great cause and I hope you reach your target!!❤

TBJZL, absolute legend ♥ Hope you guys can reach your goal, good luck!

Saw this on TBJZL YouTube and had to donate. Hope you reach your target quickly. Nobody deserves to go through this!

TBJZL brought me here, hope it helps. Greetings from Poland :)

Not much but i hope it helps a little :) tbjzl helped me find you guys. All the best for your family and keep your heads up!

I hope you get all the amount you wanted! Credit to TBJZL for raising awareness in his latest video!

Tobi brought me here. I hope your mom gets well as soon as possible. Best wishes from Switzerland

So glad Tbjzl brought my attention to this cause. Wishing you all the best and good luck! :)

Best of luck. So glad that this great cause was brought to my attention by Tobi. You guys are really brave and strong and I totally admire you for that. Stay Strong!!!

Hope all goes well in Germany! Lots of love... A loyal subscriber of TBJZL

TBJZL bought me here, hope this helps!

Wishing the best of luck to you and your family! tbjzl deserves a lot of love for promoting your cause. #cancerispants

April 21, 2015

Radical Remissions, Art, IP6 Gold and Dead Chickens

April 21, 2015/ Lou Hulton

Radical Remissions, Art, IP6 Gold and dead Chickens,

The last few days has been a whirlwind of messages of love and support and a steady stream of over £18,000 of donations from many loved ones and friends, colleagues and total strangers – honestly from all over the world. There have been pants on dogs, cats and rabbits, a few bonkers music renditions (all performers suitably adorned with pants) and a selection of elegant pant on head photo opportunities – which are on the facebook page and which we will upload onto the fundraising page on this site. The many messages we have received just emphasise how many people have been and are touched by cancer.

Such a huge thank you for this incredible generosity and kindness and for the plans afoot to keep the momentum going so we can hit the target (zumbathons, walks on the Downs with pants, pants on heads days at work). The kids version of Katy Perry’s Roar will soon be uploaded, it needs some final tweaks. At least two of my children (Tom 16 and Will 14) are finding repeated pants on head photo calls rather grating and there is a bit of gritted teeth going on. Not sure it is ultimately great for their street credentials to be seen plastered over the internet with boxers on their heads. With £18,000 raised I feel bold enough to start booking my trip to Germany. A friend who speaks German spent yesterday phoning around to find me somewhere to stay near by the Clinic which is in Gottingen, near Hamburg. For some reason everywhere was full, but she managed to find me a room in the end about 15 mins walk from the clinic. I will arrive in Hamburg on 8th June and stay for 10-12 days.

I have been a bit more wobbly this week physically. I have lost quite a bit of weight so my trousers fall off me and my head, with wig, looks slightly big for my body. The chemo does something to both my digestive system and my appetite is all over the place. The nerve endings over my body feel frayed. All in all it is not too bad, just a bit harder than the previous few weeks. I have a week off now so this will help settle things before my final batch of three.

Radical Remissions

When I was diagnosed this time round I poured over the miserable prognosis figures available on the internet. But then I stopped. I am a demographer – and am familiar with analysing and interpreting data on risk. Despite this – the starkness of 5 year survival statistics for my stage are not kind. But what is an average? These are population based calculations not an indication of how I, Louise Howes, will fare. I stopped looking at this sort of information and started seeking out books and resources that focused on survival. The first one I came across, and I would recommend as a good place to start, is called Radical Remissions, by Kelly Turner. This is a book which is based on the experiences of 1000 individuals who have experienced a radical remission. The author interviews these individuals, who come from all over the world, and draws together what amount to 9 core strategies which she found this group of people reported having employed to some extent and credited their survival to them. These are:

1. Radically changing your diet - Diet underpins a vast majority of survival stories. In most cases these survivors begin their own healing through a radical change in diet. With my radical vegan, no alcohol, organic diet I have top marks so far for this part of my plan.

2. Taking control of your health (you can see I am already working on that!)

3. Following your intuition (I have always done this)

4. Using herbs and supplements (check)

5. Releasing suppressed emotions (hmm – not really got very far with this)

6. Increasing positive emotions (definitely working on this)

7. Embracing social support (completely embracing this)

8. Deepening my spiritual connection (have been slowly working on this)

9. Having strong reasons for living (this is my number one)

I have been working through the nine strategies to put in place my own personal survivor plan. I am going to cover some of this in this blog – but today I will tell you about just two small parts of my plan. One relates to herbs and supplements and the other probably to increasing positive emotions.

Using Herbs and Supplements

In terms of supplements – I will talk about one of them in particular today. It is called IP6-Gold with inositol. I found this after pouring through various websites and blogs which look at different supplements and complementary therapies. This is how it is described in Natural News:

IP6 Shines Brightly as an Alternative Cancer Treatment and Preventive
http://www.naturalnews.com/024635_IP6_cancer_research.html

The anticancer effects of IP6 are turning out to be nothing short of astounding. Research is showing that besides reducing cell proliferation and increasing the differentiation of malignant cells, IP6 can often restore cancerous cells to normality.

The article describes how IP6 works to Protect Against Cancer (have a look at the resource page for more detail)

They describe it as a ‘very common intracellular messenger, meaning that it controls and influences many cellular activities’ – including the following. It

Normalizes the Rate of Cell Growth
Helps to normalize cell physiology
Enhances Natural Killer cells
Increases tumor suppressor P53 gene activity
Inhibits inflammation
Exhibits potent antioxidant activity .
Enhances apoptosis (programmed cell death) Affects angiogenesis
Inhibits metastasis

The reviews about the product that you can find when you search for it are pretty powerful. Check out iherb http://www.iherb.com/ – a great site for cheaper supplements – they come in from the US via DHL so you have to pay VAT on top before they will deliver them to you but they are still much cheaper than anywhere else I have found – and this is the case for most supplements I am taking. They deliver quite quickly also. But even on Amazon there are pages of reviews claiming amazing responses by people who have used this product. Not that this is a very scientific way to evaluate its potential, but with the above and similar descriptions about how it works and the research this is based on, together with personal testimonies I came to the conclusion that I have nothing to lose using this product and everything to gain.

It can be taken in conjunction with chemotherapy and I started taking 12 tablets a day just over a week ago. This was the week before my 9th chemo at the end of which my neutrophils and white cell count were the highest they have been since before I started chemo and my liver function has continued to improve – so it has certainly done me no harm and I will keep going with it as part of my combination approach to the cancer. My father was ill with cancer last year and I have chosen him a small number of what I see as must take supplements to help keep it at bay – and this is one of them.

Increasing Positive Emotions

I decided that to do this I needed to find some creative outlet. I have never been artistic in anyway, I find cooking a trial and always have and I can just about sew when emergencies require a button or hem to be replaced or patched up. At the boarding school I was educated at years ago, we were graded for every subject and almost every term. I was consistently bottom of the class for handwriting and art and when it came to music, Sister Ancilla (it was a convent) our ageing singing teacher, auditioned the whole class of 9 and 10 year olds for some Christmas concert which was to be recorded by the BBC – and left only 3 of us out. We were known as the three frogs, to great amusement of all and I went along with this. But the combination of these early approaches to education convinced me that art and singing were really not my forte and to cover up my disappointment I feigned a lack of interest in either – so coming last in school grading exercises was more of a badge of honour than anything else. I would have got such joy out of art and music if I had had the opportunity and courage. Does it matter that I showed no particular talent for either?

I am facing up to this creative gap and am finding ways to fill it in some way. I am not talking anything very technically ambitious but I am happy with my plans. First I read about the growing trend for grown up colouring in. http://www.theguardian.com/books/2015/apr/07/adult-colouring-books-grown-up

I used to love colouring and this idea completely appealed to me. I have bought my own colouring in book and a brand new box of 40 colouring in pencils and have spent a few hours so far gently (and mindfully) filling it in – although it takes an inordinately long time to finish any of the complex animal shapes and I have made only the tiniest dent in the book so far. It is incredibly therapeutic and it keeps my hands occupied and lets my mind wander calmly. It is quite good to do as a way of winding down before going to sleep. And at the end of it I have something relatively pretty to look at that I have created (at least contributed to). So far this amounts to a couple of fish and three butterflies.

Second I have found a singing group on a Tuesday. I have not yet joined but it asks for no auditions and is just for fun. I love singing but have never, since that early humiliation, sung anywhere other than in the car, the house and church. I have certainly never joined a choir.

Finally third – and this is my biggest most ambitious plan yet – I have decided on my knitting project. I am going to knit each of the children their own patchwork blanket. This is simple. Lots of squares – which even I can manage. It is long term, which will keep me going as I will have to finish all of them. And it will leave them with a blanket, which will be full of my love and they will know that wherever they take it, when they put it on them I will be there looking out for them and keeping them warm and safe. Ella has bagged the third of these creations – expecting that it will take me at least two blankets to be up to scratch enough to start on hers. So far I have knitted one and half squares. I have some skill honing to do as you can see – with one end of it tighter than the other – but it is only a matter of time. I will be soon be racing through these squares and will create masterpieces once I have smoothed out the early technical hitches.

A tale of 2 chickens – (actually 5 in total)…all now in animal heaven

Something else happened last week I wanted to write about. We lost our two chickens to greedy Mr Fox.

When I was having treatment in 2010 we lost our rabbit and I documented the tragic tale of its final moments, burial and memorial. This week we lost our two chickens. Actually we have lost 3 chickens in about 3 weeks, but one of them was the replacement for the first chicken that Mr Foxy attacked. It was only 19 weeks old and we had only had her for a few days.

Our days of chicken rearing started about 2.5 years ago when Ned came back from school (year 5) begging me to let him bring home some of the chicks that the class had watched hatch from eggs that they had been incubating as part of a school project. Well – since the chickens are now gone I am going to reveal one of our most closely guarded family secrets.

Why I even agreed to chickens in the first place is a mystery. What came over me? Ned did. He is a particularly persuasive and determined little boy and I must have had a spasm of youngest child growing up syndrome – which means you give in much more easily as you realise your days of these childlike wants and desires will soon be over and you will miss them. He also used the ‘everyone card’ – everyone is taking one home. It was his 9th birthday so we agreed and I did some quick research into the basics of urban chicken rearing. I was not aware quite how much work this would entail to start with, and equipment. We needed a special heating lamp – a great big red lamp which keep the new chicks warm. Having given in, and extracted all sorts of soon to be disregarded promises about taking responsibility for caring for these new additions to our family, I found an old hamster cage which we converted into a new home for the chicks.

I set the cage up in Ned’s bedroom. Pick up for the new arrivals was on the last day before half term. This was the the same day Ned was celebrating his birthday and he had invited 5 friends round for tea. He was bursting with pride that he was actually going to be bringing some of the chicks home. The ‘everyone’ claim was, not unpredictably, a complete fabrication and when I arrived to pick the chicks up the teacher told me that only one other person was taking any home and the rest would be returned to the farm that the eggs had originally come from. I arrived with a cardboard box, Ned and his 5 friends and we spent a hysterically over excited few minutes while they carefully selected the four chicks I had agreed he could choose. The whole class had spent days waiting for the eggs to hatch and had named every single chick. The four were selected and we made our way back home to install them in their new home.

All 6 boys spent a happy hour playing with the chicks, taking them in and out of their new cage. I had had trouble attaching the heavy red lamp they needed to keep them warm and in order to attach it properly I need to leave the lid off the top of the cage as the lamp took up most of this room. The chicks after all could not exactly fly so this was an OK home made adaption. After this love fest towards the new chicks they all went off to the park. I was in the kitchen getting tea ready and finishing bits and pieces from work when my older two boys came home. William spent some time checking them out and then went to do some homework. A few moments later Tom went upstairs to have a look also. He shouted down the stairs to ask how many chicks we had bought, he could only see 2 but he thought we had agreed to have 4. I thought he was playing around and told him to stop mucking around. ‘Honestly Mum I can only see 2’. I simply couldn’t imagine how we could have lost 2 chicks from this relatively high sided cage given they could do little more than bounce a few centimetres off the ground. I ran upstairs ready for Tom to say he was playing a joke and took a look in the cage. Shock. Horror. The heavy red heating lamp had become dislodged and had fallen directly on two of the chicks, who were entirely obscured from view under this contraption – dead as a dodo – and slightly warm but not yet smoking. Honestly – I still remember this heart stopping moment of realisation. We had had the chicks for little more than an hour. The 6 boys knew them by name. How was I going to explain this?

It was a true Challenge Annika moment. I had to think fast. First get rid of bodies. Pick them out, wrap them in something and hide them in my handbag until I could think of somewhere to dispose of them. My heart was racing – I simply could not believe we had managed to kill these poor little things within moments of arriving in our house. What to do? What to do? Tom checked the time and we realised that school would still be open. We reacted with military precision. William was posted downstairs to do whatever it took to prevent the boys going upstairs if they happened to come back from the park. Tom and I ran like the wind to the school, arriving (at least I was) slightly sweaty, agitated and panting. Ned’s teacher was still there. I had constructed a major white lie to justify the last minute request for yet more chicks that I was about to make. I could not bring myself to confess and tell the truth. Who would trust me with more chicks if I could only keep them alive for a matter of hours? So I (very unconvincingly according to Tom) blurted out some story about my sister hearing about our chicks and asking if she could have some too. The teacher happily released two more to my care (we tried our hardest to match the new ones with the recently deceased) and Tom and I raced home to replace them.

The timing was split second. We just replaced them when the doorbell went and Ned and friends came pouring back in the house and raced upstairs to play again with them again. They carefully opened the cage, took out the birds – one of which was a well matched replacement but the other was a giant – but the closest I could find from the selection at the school. We stood outside holding our breaths. ‘Wow’ said one of them ‘Look how fast they are growing this one is huge now!’. And that was it – oblivious they continued their chatter as they played happily with the even newer arrivals. And even to this day Ned does not know what really happened on that fateful day. I think I had better tell him now I am posting this.

We managed to keep these four alive for a good few months until two of them revealed themselves as cockerels and both were taken to Middle Farm (to find a new home). Loud crowing in an urban area does not make you popular. We were left with Bella – a huge, white, bossy hen and Charlie, a smaller, brown one. We let them roam the garden during the day and they coexisted with the two dogs with only the odd altercation over scraps of food. They produced eggs on and off and were a lovely, clucking, calming contribution to family life. But we lost them both within 3 weeks of each other.

We still cannot work out how Mr Fox caught Charlie as they are locked away at night and we found part of her body in the garden one morning, feathers all over the place and Bella had a bloody cut around her neck – she had survived the attack. But without her little friend she was lost. Chickens are flock animals – they need a pecking order. So after coming to terms with Charlie’s loss we went to find Bella a companion. She is a white and black Old Sussex, so we chose a young black and white Old Sussex which we called Bellatrix. They had had only a few days together before they too were got by the Fox. He knew he had left one behind and had been hanging around, determined to finish the job. And in the end he did. We found a headless Bella in the garden. Bella who had given us such joy. But like Charlie, apart from a few feathers there was no trace of Bellatrix body.

Our garden is not the place it used to be. We are still getting used to their absence. Our neighbours have a sweet little slightly ornamental dog which Tom sometimes walks. He told them about the fox and the chickens, which is when they confessed that they had found both Charlie and then Bellatrix’s bodies in their garden but had thought that their little pooch had somehow killed them and they had been holding back admitting this discovery. The fox did not even eat the chickens. Just ripped their heads off and left their bodies lying around. They can’t be that hungry - all the lovely urban rubbish they manage to scavenge. But now our garden is quiet and we no longer hear the gentle clucking of our feathered friends.

April 16, 2015

www.cancerispants.co.uk GOES LIVE…….

April 16, 2015/ Lou Hulton

Welcome to this new home for my blog. I have definitely had a bit of an upgrade with a little help from some amazing friends who have whipped this site into being in almost no time. This is a whole new territory for me. Fundraising. For me! It doesn’t feel right. As you will have read all over this site we are raising funds for me to get Dendritic Cell Therapy (and some complementary treatmtents) in Germany. Our friends have been wonderful, rallying around, offering to help and cooking meals. Many have also asked if they could work directly to raise funds to help me to undertake this and future treatments. It is these offers of help that have encouraged us to set up the site.

On line there is a large community of advanced cancer patients, I call them the Fighters. Finding themselves in my situation they have done exactly what I have done. Listened to what their oncologist has to offer in the first instance. They have then gone on line and joined networks to seek out stories of survival. They have read books, papers, joined networks and investigated each and every potential treatment available. They have learned about promising new drug therapies and trials that may be eligible for. We learn from each other. Share ideas. Get the latest news about promising treatments. As this community grows they are becoming more vocal. This quiet revolution is possible because of the internet. The world is a smaller place. As people experience amazing responses they can share this and often do on you tube, via testimonials and like me, their own blogs. I am aware that there is a fundamental bias in place – you will of course hear more about stories of survivorship as they are still around to be heard. Those not so fortunate are clearly not represented. Even so, among these stories there are too many hopeful and credible strategies for survival to ignore.

Why Germany?

I will share some of what I have learnt here and my views on them. For now I will focus on the immediate treatment I am aiming to have in Germany – and for which the fundraising push which started yesterday is all about. As I write nearly £8000 has already been raised in nearly 2 days – which is completely overwhelming. My fingers are itching to keep the blog up to date with progress and news and views I hope will change people’s perception not only of cancer, but of the options that exist, the politics of treatment and a little bit about the joy of life. With occasional moments of sadness.

Aunt Joanna at her 65th birthday - almost a year before she died.

My beautiful Aunt, who died of Ovarian Cancer last year had a pact with her husband – they allowed themselves only 10 minutes of sadness a day. I think about her all the time. We were both diagnosed within months of each other around 2010 and we had chemotherapy treatment within 3 days of each other for a few months and spent hours on the phone sharing blood counts, notes, thoughts and fears. She fought so hard and despite being told she would not likely last a year she lasted almost 5. Smiling til the very end and always so dignified and calm. When I found out it was in my liver. That evening I had the ultrasound in January. I remember going into a sort of mental fug – I simply could not absorb what I had been told.

I think maybe this was what shock feels like. And the person I wanted to call right there was her. But she was not there. It is funny how when someone dies there is such a lag time to absorbing their absence. Unless you live with them when their loss is felt daily, coming to terms with absence is so hard. Many times I think about calling her or wonder what her opinion would be on something. I have always believed when you die you simply go back to the earth, but recently I have thought about the people in my life and those loved ones of friends who have died and feel some sense of camaraderie in a very strange sort of way. Not that I intend to join them any time soon but the fact they are there – wherever there is, is surprisingly a comfort.

I am meant to be talking about Dendritic Cell Therapy in Germany! I came across this in my research first in a search of You Tube. Try it out – type in Cancer Survivors Testimonials and you will be amazed at what comes up. One of these stories (which I annoyingly can’t find but will carry on looking) featured a woman with advanced breast cancer who was running out of options and heard about dendritic cell therapy. There are clinics in Mexico and her friends got together (a bit like my amazing friends) and launched a fundraiser for her. She responded to the treatment amazingly and the disease was pushed right back and the interview with her is 2 years on and she looks healthy and is still in remission despite a very rocky treatment and relapse history prior to the treatment.

This made me investigate it more and while I cannot claim to be an expert I have learned an awful lot about the potential of this immunotherapy treatment. I have also found some disturbing information about why so many treatments take so long to see the light of day. The therapy I will get is called Dendritic Cell Therapy – here is what it is:

Dendritic cell therapy is a therapy which involves the use of a personalised vaccine to retrain the immune system to recognise cancer cells as a threat to the body.

Dendritic cells are found in all blood vessels. These cells identify foreign substances, such as cancer cells in the body, process them and then help jump start the immune response to destroy them by bringing them to the attention of the T cells. Often the dendritic cells are not very effective with this process.

With Dendritic Cell Therapy, the patient's own dendritic cells are treated and modified to be able to specifically train the T cells to attack and kill all cancer cells that have the same foreign substance on their surface.

This is a treatment which is low toxicity and trials have shown it to be very safe.

In the UK at present there is a ‘ladder’ of treatments for people with advanced breast cancer. For my type of cancer these are mainly chemotherapies or hormone therapies. In practice oncologists will work their way through these treatments until they start running out of options. Once I have a treatment I cannot have it again and while a treatment may work for a while the expectation is that it will, at some point, become resistant and I will have to change treatments (assuming I have options left). I can just sit and work my way through the standard treatments currently available to advanced breast cancer patients in the UK until I am eligible for a trial but, but my cancer may be too advanced by then to make much difference. So from where I am I have no choice but to get out there and see what is currently available with good potential to extend my life and improve the quality of it.

I was very nervous about this to start with. Simply the idea of going to Germany and paying for something that was not registered and not formally recognised by the established medical profession in the UK made me feel very off grid. Rather reckless and desperate. I was embarrassed to talk to people about it as it felt as if I might be moving into the realms of hope not sense. BUT I have read many papers on this therapy, I have spoken to one of the UKs top oncologist, a proponent of this method (you will hear more about him!) and he has been to the clinic I will go to and used to give this therapy in the UK until the European Clinical Trial Directive which stifled this and many other promising therapies making trials simply too expensive (you will hear more about this too!), I have watched testimonials and presentations on You Tube and I have spoken to people who have been to have this treatment. And my conclusion is that I would be mad NOT to have this treatment.

This is done alongside other treatments so I will still start on hormone treatment soon after chemo ends and I will continue with my other supplements and some complementary approaches to keep my immune system strong. I am booked to go to a clinic in Gottingen near Hamburg in Germany on 8th June. My first trip will be about 12 days when they make the vaccine and then I return 4 more times, every 3-4 weeks for 3 days for the vaccine.

Nine Chemotherapies – Three to Go…..

I had my 9th chemotherapy today and met my oncologist beforehand. My bloods were great – with my liver function tests all in normal range (except one pesky one which I think is aggravated by the chemo anyway) and so I will not have a scan until after the 12th chemo – only 3 away. He was supportive of my going to Germany (and in fact referred me to the Professor who specialises in Immunotherapy). So, with the sun shining also and amazing things happening on the fundraising page – today is a good day!

The hormone treatment I will have (Letrozole) after the chemo is only prescribed to post menopausal women – so my next physical challenge is going to be being put into a chemically induced menopause almost overnight. This involves an injection monthly. If I tolerate this OK I will then have my ovaries removed. Rupert is organising some carefully timed work trips over this period – as far away as he can :).

Thank you !

As I sign off tonight – I do so with my heart bursting at the generosity and kindness of my many friends, family and neighbours and to the many many people who do not even know me who have been sending donations! Thank you Thank you Thank you

Finally Watch out as my children ROAR ….

A couple of nights ago Ellie, who has been the engine behind this website (she is a major force in the anti fracking movement in Sussex (see Frack Free Sussex) as well as being an amazing composer and song writer http://www.elliewyattstrings.co.uk/) marshaled my kids to produce a version of Katy Perry’s ROAR – watch this space! You will notice Ella (18) and Ned (11) getting right into it, Tom (16) enduring it valiantly. William (14) found the whole thing very uncomfortable but then I am not sure I blame him – they are all singing with pants on their heads. He is a 14 year old boy and he knows this is going to be shared far and wide. I can’t wait to see the finished product and to see if we managed to make it look as they were all having an equally good time. Thank you ELLIE and thank you to her husband Andy who has helped her and took all the photos and will be helping to put it all together. You are an amazing couple.

April 13, 2015

Fasting before chemo…am I mad? April 10th

April 13, 2015/ Lou Hulton

Among the many steps I am taking to influence my healing, a new introduction to my regime, is fasting. I tried this last week. I fasted all day Wednesday, the day before chemo, and all day Thursday (chemo day). Why would I do something so mad I hear you cry? Why indeed. Well among our research fasting came up a number of times as a strategy to both reduce the side effects of chemotherapy and to increase the effectiveness of the chemotherapy. It sounds rather counter intuitive but the research this is based on is promising. As far as I am aware it has not been adopted in any standard guidance, but the study is relatively recent and I can imagine this would not be an approach you would want to advocate for many chemo patients. But it was convincing enough for me to give it a go. I reckon as I have gone down the chemo route I want it to be as effective as it can be. My next scan is in only 2 weeks and I want to see some movement.

So….apparently ‘modified fasting for 3 days before chemo and 24 hours after chemo will put normal cells into a maintenance mode, not reproducing as much, but cancer cells can’t stop. Starved, they are more vulnerable to chemotherapy, and normal cells are relatively protected. Even if fasting didn’t help slow tumors and help the effectiveness of chemotherapy, it does improve the effectiveness of chemotherapy, and people’s weights and WBC counts rapidly bump up with eating’

I tried it last week and can verify that my WBC went back up to almost the same and my neutrophils and haemoglobin were higher than last week (after a week off). So I have just fasted this week also. Today is Friday and I have the luxury of eating. Except that some of the food I eat really is not that luxurious. I try to like the green juices – full of celery, kale, cabbage, beetroot, parsley, carrot and ginger. But I simply don’t. Today, despite being back and able to eat I don’t have the food around me that I think I feel like. This can be an annoying part of chemo – it affects your appetite. Mine has not been badly affected but enough and on days like this it is very boring because I am at the same time starving but cannot work out what will satisfy me. Here are some links that influenced my decision to not eat for a couple of days.

http://www.scientificamerican.com/article/fasting-might-boost-chemo/

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

April 04, 2015

Mind Body Spirit Emotion - Penny Brohn Centre April 4th 2015

April 04, 2015/ Lou Hulton

So I have been a bit quiet since my last post. I was surprised how much of a knock the scan result felt and how quickly I became down and rather frightened. I began to catastrophise about what this could mean. Would it never go from my liver or even get any smaller? My oncologist described it as stable so while no progression, there was no visible reduction. If my liver mets (short for metastases) are only stable by the end of the treatment then if it does subsequently progress it is starting from a base of ‘extensive liver metastases’ rather than no evidence of disease (this is possible and does happen) or even a few spots left over. I paid less attention to the fact that I actually feel incredibly well considering and that my liver function is good and the damage/inflammation markers have halved. He described in a subsequent letter to my GP 3 possible positive takes on the lack of progress on the scan. These were 1) the rapid onset might mean it is slow to respond (my response to this is how do they know it was rapid. I had not tests or scans or anything so frankly no one has any clue how long I have had mets in my liver – symptoms are rare until it is quite progressed. I had a huge cocktail fest in the summer when we visited Rupert’s Aunt on a family holiday and although it was a very fun evening I felt extraordinarily nauseous and ill the next day – which could indeed have been a normal hangover but I remember thinking that first I had not actually drunk that much and that I really did feel strangely bad. Maybe I had the beginnings of it then? Who knows? I digress). The second reason could be that the scan itself does not distinguish between dead and alive cancer – as it is a CT scan it shows mass. It is the PET scan which shows up live cancer (and I have not had one of these yet – and as they involve injecting something horrible I am not sure I want one too often). Thirdly dying cancer could be creating a ‘pseudo cirrhosis’. Cirrhosis of the liver – despite it being quite a tough organ, never goes away. So this would not be good really.

Since then I have had one further chemo after my week off and my liver mets are still improving and the pressure under my rib and slight tenderness feels less pronounced so I am feeling more hopeful. I cannot believe that with all the changes I have made to diet and supplements that not only are they helping me with the side effects but in their own right they may be facilitating cancer death or tumor suppression.

The day after the scan Ella and I traveled to the Penny Brohn Centre in Bristol (www.pennybrohncancercare.org). This is an amazing resource for people with cancer. Established by Penny Brohn who was diagnosed with breast cancer and could not believe that the only support and services available to her were through oncology services and the only options radiotherapy, surgery, chemo. Burn. Cut. Poison. There was no attempt to support people to improve side effects, the quality and with that possible length of life. No focus on essentially the terrain within which the cancer was born. Diet. Spirit. Emotions. Mind. All of these things fundamentally affect our cells. Why do people get cancer in the first place? We all have cancer cells and our immune systems can be very effective at identifying them and gobbling them up (or whatever they do). Something happens which makes them less able to do this and cancer takes hold. Genetic disposition can make this easier but not inevitable. So if someone with cancer seriously wants to influence their outcome do they continue the lives they lead before the cancer. A life which clearly lay the foundations for the immune system to crack and the cancer to take hold? Or do you examine your ‘terrain’ and determine what might have contributed to this disease taking hold and consider what you might do to influence its progress. The simple fact that I have managed through diet, supplements, yoga and acupuncture to get my side effects under control and lead a pretty normal life (as much as you can with a compromised immune system) simply makes me more convinced of the power of the body to heal itself given the right conditions. The limitations of current standard therapies are well documented and to simply follow this blindly and pay no attention to any other routes would in my view hasten my demise. This does not mean I do not believe it has a role and some of the newer therapies being developed are a completely different ballgame to the chemotherapies which have dominated oncology for so many years.

If you have time I strongly urge you to watch the following documentary:

www.survivingterminalcancer.com

Penny Brohn set this centre up to offer an alternative and it has since grown into this amazing sanctuary for people living with cancer. They run residential course (among many other things) in a lovely house which has been converted into a sort of specialised hotel, serving vegan and vegetarian food (if needed) so perfect when you are on a diet like mine. They have a library, art therapy, cooking and nutrition classes. We arrived in the evening after a mammoth 4 hour train journey from Brighton on the worlds slowest route which stopped at every possible station – as I had relatively recently had chemo I did find this quite tiring. This was also the furthest I have been away from my bed and support systems since starting treatment. I was very low as I was still absorbing the scan results so was rather tearful the day we arrived.

We had a brief welcome session and mediation on arrival where we met our ‘group’ for the first time. It was as if someone had gone into a shopping centre on a Saturday and literally picked out a random 10 people. We were all so different. Ages. Backgrounds. We ranged from Ella at 18 (who was a supporter) to mid 70s I would guess. With a 31 year old with ovarian, 37 year old with breast cancer, a couple with Hodgkins Lymphoma, a recently retired woman with breast and two with late stage inoperable and untreatable lung cancer, and one other supporter – the husband of one of the women with lung cancer. But the bond between us was immediate. Nothing really mattered in our differences but we were simply bound by what connected us. The freedom to speak with others who were all grappling with many of the same emotions, the insecurity and uncertainty, the grief and also the joy and love that comes with a diagnosis like this. There was lots of crying on and off over the course – but this was good liberating crying. It was a place to be able to talk about some of our deepest fears and our grief. The change in relationship with our friends and family from the strong, dependable sorter to the dependent. I don’t want my children to see their powerful, vibrant mother become a needy shadow. I want to live and to live well. To make cancer something I live with and tolerate but that does not consume me. I want them not to fear it but to understand it. I know I cannot repress my emotions about it. I know it does frighten me and I do grieve but if I can find ways of managing that and living for now and living happily and well in the everyday then this journey will be far more tolerable. And this is what the sessions at Penny Brohn helped me see were possible and began to teach us ways of achieving this. I have always known mindfulness was a useful tool but I am sure I am not alone in not really ever learning much more about it or even if I have practicing it properly. Suddenly it offered such an obvious strategy for me to get through everyday. They reminded us that thoughts are really just imaginations. Things that may or may not happen and when you wake up at night and the demons descend you can either indulge or use approaches like visualisation or breathing to bring your mind back to the now.

Within the group were other people with stage four cancers and it was brilliant to share with them the research we have all done on complementary therapies. The husband of one of the women with lung cancer had spent his first 6 months of retirement researching therapies. She had had a previous unrelated breast cancer many years ago and they had treated this with alternatives and it had never returned so he was already well informed. We now talk on and off as we share knowledge and updates from our various research and have both introduced each other to new therapies and contacts.

I returned home reinvigorated and am ploughing on as I design a treatment and maintenance plan, including how to detox myself of the chemo and rebuild my immune system when this chemo ends. I will write a blog shortly specifically on some of these therapies and the very strong evidence that exist which support their use as a powerful anti cancer product. It will also touch on the perverse approach to cancer treatments (and I am sure this applies to other diseases) which see the powerful pharmaceutical companies dominating what comes onto the market and is subsequently registered and the finally made available as a ‘standard treatment’ often years after the initial clear evidence of benefit. This delay relates to our systems for registering drugs and then having them incorporated into for eg NICE Guidelines. Then if we are lucky the NHS will cover them. In the meantime the likes of turmeric gets cursory notice within standard treatment and I am not sure you would hear the average oncologist suggest you explore it. There are products out of patent with strong research underpinning their potential and proven impact on cancer but will they ever attract the millions required for the randomised control trial needed before they can be recognised as a ‘legitimate’ cancer treatment.

The more I read the more I am outraged. In the meantime there remains among so many a blind faith in what oncology has to offer and a nervousness about going beyond this. There is a sense that us poor stage four cancer patients are simply grasping for straw. Hope being our sustenance. All you have to do is take a cursory look on the internet and the voices of cancer patients surviving longer than everyone expected, telling their stories of how they helped heal themselves and the prolific research into other therapies which often show in principle better potential outcomes to standard chemotherapy and I hope this will open your eyes. In the 1980s HIV patients stormed the Capitol. They wanted access to Phase 2 tested drugs. Knowing that by the time the Phase 3 trial was complete they would be dead. Why could they not take the risk that the drug may be too toxic or not quite the right dosage or even that it might counteract each other. And they won. As the documentary Surviving Terminal Cancer suggest also –advanced cancer patients need better access to both promising treatments sooner as well as a revolution in the way cancer therapies are evaluated and then offered as treatments.

Oooh…I am on a roll. You will hear more about this.

Penny Brohn is a haven. Ella and I still managed to flood our room. We thought we had successfully mopped it all up with our towels only to find out at supper that the Art Room had flooded and they thought it was coming from Room B1. Ooops. They have silly plugs which automatically close. And no overflow on the sinks.

March 24, 2015

Scan Results B/B

March 24, 2015/ Ella Howes

The oncologist looks for 3 things. 1) am a well 2) what does my liver chemistry look like 3) what does the scan look like. I am well. My liver bloods have improved and are almost normal. My scan has not changed from the baseline. He would have ‘liked to have seen more of a response’. They are keeping me on the placitaxel as the improvement in liver function would indicate it is working. But I am disappointed and low. I will have another scan in 4 weeks and they will keep monitoring the bloods. The conversation underlined how unpredictable my situation is.

What positives can I squeeze out of this meeting?

That it has not got worse – and cancer multiplies so something has stopped it multiplying.

What is making me sad?

That it is more difficult to stay positive with no visible change in my situation from when I started. That even if the chemo simply keeps it stable (which may be the outcome) – they will still try me on hormones – but I still have a compromised liver and any progression if/when the hormones stop working means I have less to play with. The worry that it is stubborn cancer which will shorten my treatment options as the ladder of treatments will get eaten into more quickly.

Rupert was with me. He was strong for me. The children were all aware what was going on – and quizzed us when we got back. I had been in London for the day at work and was tired anyway which made it hard to hide my feelings. I felt low and flat. Ella reminded me of what was positive. She found a study that showed that stable disease had similar outcome as those that regressed (but I don’t think that related to the liver). She also read that CT scans do not show live cancer (like PET scans) and as mine is salt and peppered it is more difficult to compare the change. Had a number of big tumours you can measure the difference quite easily.

Regardless…I have woken up on Tuesday morning and I am a bit teary.

March 21, 2015

The Scan, Dr Who, the Numskulls and Ghostbusters

March 21, 2015/ Ella Howes

The Scan

The Scan was at 9am yesterday. It was a CT Scan. This involves lying on a bed which goes through a polo shaped machine. You are hooked up through a cannula in your arm to a massive injection of iodine (to provide a contrast) which they inject into you seconds before the scan happens. The iodine makes you feel warm in your throat and your bladder strangely – for just a few seconds. The scanner person (not sure what his actual professional title is) was Polish. The same person who did my pre- chemo scan. After that scan I was convinced I could read his face and his face told me that not only was my liver riddled with cancer but that it was all over, bones, lungs, everywhere.

There is something about being near a person who has information about your condition before you do. You can’t help yourself, but you hang on to and try and interpret every twitch, every smile, frown, poker face. In this case my assessment was that he was being more friendly than last time. I put this down to my bandana - I was clearly a youngish women with cancer. Reason to be nice and kind. He chatted more than last time. I asked him if he could please take some really good pictures and he said he would do his best.

We had a funny moment. Prior to the scan I had to get dressed into a cotton hospital gown that ties loosely at the front. He had told me, in his relatively thick accent to ‘take off your clothes except your underwears’. I did so. Not long after, as I lay still for the initial mapping scan - the preparatory scan they take before the iodine goes in, he came out of the little command centre room next to the actual scanner which he retreats to when the scanner goes on and said ‘we have a little problem. I said to undress to your underwears’. Now I took underwears to include my bra. Rather stupid given the area I know they need to scan. So there I was with an big iodine injection attached to my right arm and my bra still on. I managed one handedly to undo it, thread it through the arm holes and hang it down the side of the machine (I keep my arms above my head). Very deft expert bra removal process. Note to self. Take bra off before next scan.

Once the scan was over my assessment was that he was not going to catch my eye. He put on his poker face. Not sure what to read from that given that last time I decided the cancer must be everywhere. Hoping that he has been expertly trained to give nothing away because if he were to smile and wink this time there may be a time in the future when he does not smile and wink so best to make no face at all, ever.

I will find out on Monday afternoon and will spend the weekend working out what questions I need

to ask the oncologist.

Visualisation – Dr Who meets Ghostbusters and the Numskulls….

In all of the books and testimonials of recoveries, visualisation plays a major role. People have a way of visualising their bodies overcoming the cancer. Now I have always been rather irreverent about such approaches. The last (and only time) I have really attempted visualisation was during my pregnancy with Tom. After Ella’s rather car crash birth I was determined to give birth to Tom normally and did every possible birth class I could to help me prepare physically and mentally. One of these involved yoga, breathing exercises and usually ended with a visualisation. As I had a small baby at home I would sneak off once we got to the visualisation session. But one day I decided I really needed to engage. I sat, willingly, open to the possible benefits it may accrue to my future birthing experience. I would not let my mind wander. I would take this seriously. It clearly works for many people, I just needed to open my mind to it. So the visualisation began. We had to close our eyes. Breath. We had to think of place, special to us. I thought of the hills of Mid Wales where my Dad used to take us on long hikes and climbs as children. After a while we had to sit down and look around us. We needed to find a flower nearby and focus on this. Then we needed to focus on the petals of the flower which would start closed and would then turn to the sun and begin gently opening. Hmmm. We needed to imagine our cervix, a bit like the flower, opening up. Well –what flowers do you think you would find on a hill side in Mid Wales? When I looked round I was surrounded by bracken and thistles. So my flower was a thistle. At which point I nearly wet myself laughing and had to leave the room. Visualisation was simply not for me.

But…I am in a different place now. Open to any strategy that my help my path to life. So I have been considering for a while what my visualisation should be. There are times (like when you are lying on a scan machine or you wake in the middle of the night) when you need something to help you focus your mind. I read about one person who imagined their blood was powerful and strong and would splat the cancer and dissolve it like an acid. I thought that would be a bit monotonous. There are only so many versions of a splatting motion. I thought about ants. Millions of worker ants trekking through my body, seeking cancer cells and collecting them all up. Then I considered miniature white morph like characters. But that didn’t last long. I had thought of a more military approach. Basically an army swot team planning strategically to take out those cells. This would involve lots of blasting and tactical plans. The dietary privations I would inflict upon the cancer would be akin to starving the enemy. I still think it works well but it was a bit anonymous. Faceless soldiers, blasting around my body. These cells are in fact my cells. Part of my body. Rogue, badly behaved cells, but mine all the same. I needed a different approach. So here it is. It came to me during my last pre chemo acupuncture session.

It has some of the essence of seek out and neutralise. It involves a team, rather than an army but it allows for the same strategizing and tactics. It is Dr Whoesque with a bit of the Numskulls – those people in the Beano Comic who control the person from the brain. They have numskulls to open the eyelids, roll out the tongue etc. In this case my visualisation involves a huge team ‘Team Lou’, yes, there is some funny Team Lou t-shirt or uniform (think paintball kit). Team Lou is made up the huge network of people who have simply overwhelmed us with their love and support. From our closest family to parents of the kids friends who just drop by out of the blue with a meal. The team has some distinct chapters. There is the prayer and spiritual chapter – those friends all over the world praying and doing medicine pujas etc. There is the food chapter. Diane and Jeff who come every Wednesday and cook all afternoon, producing at least 3 or 4 meals for me and the family. Christine who seeks out organic vegan recipes and creates meals she drops by with. And Rory who cooked a massive shepherds pie for the kids and dropped it off. My mother cooked a lasagne, Colleen a squash soup and homemade sourdough bread. Teams are not exclusive and people belong to a number of chapters. There are the regular text messagers, love and uplifting thoughts and sayings (Tim and Paula). The flower and present chapter – includes everyone – I have never been so spolit. Grizzle (Clare) sends weekly packages with presents – organic creams, notebooks, music, supplements. I have had books, CDs. The love and friendship chapter – is every kind action and thought that keeps me and my family, lifts for kids to places we can’t get them to or from, kindnesses and hugs. Then there is the medical and broader health and well being support team - the oncologist, acupuncturist, yoga teacher and lovely Ann Rose who smells of lavender and volunteers at the chemo unit, and has done for over 25 years, and massages my feet while I am waiting for chemo. So – this team (I still want to call them an army) – have been shrunk and transferred to my body, I have a particular Dr Who episode in mind, and they exist in miniature, dressed in their Team Lou kit with a Ghostbuster type machine on their backs, a cancer buster. This is a bit like a hoover which is used to vacuum up the bad cells which are then neutralised in the machine and spat out the other end as healthy new cells.

Currently most people are concentrated on the liver area of my body, as that is where the rogue cells are running amok. But I see my brother leading a team, which includes Ned and William, into the further reaches of my body, in search of any cancer stem cell five star generals daring to set up camp somewhere else in my body. Much of this affair is controlled by Marshalls (the Numskulls) from a control centre. Ella is there most of the time but Rupert is there, Tom and others at various times and my sisters. As I down one of my fiercely green juices or a green tea I imagine Ella speaking through the intercom system to warn people that the cancer cells will be particularly vulnerable as these pass through my body so to keep their eyes open for cells lurking in dark corners trying to avoid detection.

A rather bizarre and mad visualisation – but consider how many scenarios to I have to play with! The only problem with it is that if I wake up at night it is not a particularly calming visualisation and it is a bit like switching the telly on. So last night when I found myself awake at 3am I switched that visualisation off, Team Lou was fast asleep and I put my Reiki infused rose crystal a lovely old school friend sent me, around my neck. I splashed some Lourdes holy water that another friend from Team Prayer sent me and then crossed my liver with some powerful holy oil from Colombia, a friend from work gave me. Then I tried my yoga breathing as my heart was beating too fast and repeated the word ‘heal’. That was a bit more appropriate for a night time.

But the above mad and busy Team Lou scene is what distracts me at all other opportunities. It amuses the kids.

Louise’s first major foray into visualisation goes overboard.

March 19, 2015

Scanxiety, treatments and a club I am not sure I want to belong to….

March 19, 2015/ Ella Howes

Treatments

I realise that in my blog last time I spent a good deal of time talking about all the ins and outs of chemotherapy, surgery, radiation and hair loss. I don’t really want to do that this time. I feel somehow above all that – been there. I may share a few details – but I will be sharing only happy and vibrant photographs. I want to focus more on my other journey – healing. Taking control and learning about survivorship. The chemotherapy will only manage the symptoms of the cancer but it won’t cure it. In fact chemotherapy can make the cancer stem cells more aggressive. They are clever cells. Five star generals, cleverly hidden from your own immune system so they can stealthily race around your blood and avoid detection. Outside of the more conventional approaches to managing cancer there are so many inspirational stories of survivorship. People taking their healing into their own hands and using a whole array of approaches which help the body manage the cancer itself. Not necessarily rid themselves of it but live with it, keep it under control. The benefits of turmeric, green tea – just to start are, and have been well known (and written about extensively) – but there are more. At some point I will share some of what we (myself and Ella) are doing to take control of my life and to do our damndest to make my body a place which is very inhospitable for cancer, and to make my immune system more able to manage it.

I will not reject more conventional medicine (at least not yet) but will use it to support the process. The regime of diet and supplements, yoga and acupuncture I am already on has had an amazing impact on my side effects. These last two week I have had way more energy than after the first 3 rounds of chemotherapy and my blood count before my 5th session went right up. My daily routine goes a bit like this:

Lemon water, sauerkraut (for enzymes), a fresh juice (all prepared by Ella) and then the following supplements – fish oil; turmeric; milk thistle; chlorella; aloe vera; spirulina and matcha green tea. We have found a supplement called Avemar which I take twice a day (8 tablets a day) – this has been amazing for side effects. Then in the evening I the same supplements plus co enymze Q10 and l-glutamine to help prevent neuropathy. I drink green tea through the day, 3 juices and my diet remains vegan and mainly organic. I do yoga at least twice a week (sometimes before the sun comes up when the night meets the day. This is when the birds start chirping). I also have acupuncture before the chemo.

My dry skin which had been itchy and inflamed for the first 3 weeks of treatment has settled and is clear and soft. I went on a walk on the Downs with Ella about 3 weeks ago and could barely walk up the hill again. I nearly fainted and had to lie down on the ground more than once on my way up – Ella stood over me like a running coach reminding me that getting better was never going to be easy and I had to put so muscle into it. Last week we did the same walk and I stopped only once on the way up. My brain feels alert. I am not without side effects but they are extremely manageable and I feel pretty good – and with my new hair definitely don’t look like I have some life threatening condition. Together this simply confirms that I have the power to influence my health.

New Treatments

I am also trying to get to grips with scientific developments. Trials, immunotherapy, gene mapping, personalised medicine. We are on the cusp of such major breakthroughs in treatment – I simply have to stay alive long enough to benefit from some of these. The United States seems streets ahead. It seems quite normal there (according to my ‘friends’ on the Inspire site – a site for women with advanced breast cancer) for women to have their tumor mapped for genetic mutations for example. There has been no question about testing my biopsy for mutations. I am not even sure you can do it within the UK unless as part of a research trial. In the US you can send your sample to Foundation One and they will examine it. They may identify a number of mutations. That information may simply be inactionable. ie that there is no treatment option indicated as a result of this knowledge. But it may be that that the mutations identify indicate eg DNA repair is the ….

Here are two responses to a question I posted asking about genetic mapping. The first response tests my intellect a bit – but I am working on it. Second one more straight forward.

‘

It might be helpful to stop thinking of cancer in terms of the genetic mutations that drive the cancer. It's nice to know whether the gene is present or absent, but it would be even nicer to know whether the gene is "actually" driving the tumor in your individual cancer cells. While some laboratories use genomic or proteomic testing to detect mutations in certain pathways, some other laboratories use functional testing to measure the end result of pathway activation or deactivation in the individual (not average populations). It can then predict whether the "individual" cancer patient will "actually" respond to a targeted agent, or not. When it comes to drug selection, the molecular investigator can only measure those analytes in paraffin wax that they know to measure. If they are not aware of and capable of measuring a biologically relevant event, they cannot seek to detect it. The premise of functional analytical platforms is that the observation of a biological signal identifies a candidate for therapy whether they understand or recognize the target.'

‘Basically, the way this testing works is that they look for common cancer mutations. The mutations in the Foundation test are not limited to those commonly found in breast cancer. The idea is that you could have a mutation that is common in another type of cancer, and there may be a drug available that is directed at that particular mutation (for example if you had an EGFR mutation, it might suggest that an EGFR inhibitor may be effective for you, even though the drug was developed with lung cancer in mind).’

There are other treatment routes - again including drugs licensed in the US but not here yet and an approach I am exploring – dendritic cell therapy (immunotherapy)which is only possible in Germany and Mexico but for which I have read some very powerful evidence and testimonials. I will talk more about these – but as you can see – staying alive is going to require military planning, research, tenacity, determination and probably a good bit of fund raising at some point – as the treatments of the future can only be had now if you are willing and able to pay.

Scanxiety

In two days I will have my 6th chemotherapy. Six out of 12, assuming that it is doing what it is supposed to do. I will know that about a week or so after this session as I will have a CT scan. I have had only a couple of meetings with my oncologist so far, and these have been a bit of a blur. It was all so new I more or less just listened, asked some very basic questions and followed instructions (doesn’t sound like me!). I was scared too, scared to ask questions for which I did not really want to know the answer. I have avoided too many probing questions. There are questions I have not asked but for which an answer exits (as opposed to crystal ball type questions for which the answer is almost certainly ‘… well it depends, everyone is different’, for example about the extent of the cancer on the liver. It was described by the cancer radiologist at my first scan as ‘salt and peppered’ through my liver and in my written first CT scan report as ‘extensive metastasis’ . I gleaned there must be tumours of sufficient size to take a biopsy (so a bit larger than salt and pepper) or I would not have had one. Other than that I have not asked directly anymore detail about the state of my liver. I know my liver bloods are OK – so it is not actually affecting the functioning of the liver at this point. It does feel swollen and hard which does not feel right. But with my scan coming up I am thinking that these questions will soon inevitably be answered as the meeting to discuss the scan results will specifically look at how responsive the cancer is to the current chemo. To determine that there will need to be a comparison between the first scan and the one I am soon to have. So one way or another I will soon have a better idea of the state of my liver, before treatment and around now.

There are a couple of websites I spend time on (mainly Inspire – which I mentioned above) and I search these for insights into the stories of other women and I join in saddo conversations about all things advanced breast cancer. There are often stories of great responses, and then set backs, but there are examples of women with liver mets who do have good responses to treatments and tumours can be pushed right back and there are even people who have periods of NED.

Oh the acronyms I am becoming au fait with! NED = No Evidence of Disease – and this is really the outcome you want after your scan. This is the A* of scan results. Other outcomes can be ‘reduction’ (A-/B+)….not sure that is the proper term but the tumours are getting smaller, ‘progression’….ie the tumours are still growing (C/D), ‘significant progression’….growing lots, (E/U) ‘ no progression’ (…no change) and ‘stable’ ie no or little change after a period of no progression or reduction (B-/C). I am trying to work out what would be top marks at this stage in the game given I like to be an A type student – but don’t want to get myself too hopeful as I am not even sure really what my baseline was – so could I even hope for NED by the end of my 12 weeks? For the moment I will be very disappointed with progression and reckon this would result in me stopping this treatment and starting something else. No progression would be a bit of a nothing result. Reduction is the one I am going for (not sure if ‘significant reduction’ possible after 6 sessions). I realise that I have a future of what a new facebook group of friends (very exclusive, private invitation only – you just need to have advanced breast cancer to join) call ‘Scanxiety’. And I am experiencing it for the first time. First but definitely not the last time.

Who are my New Friends?

Through the Inspire website, I posted a question and someone from the UK messaged me and asked if I would like to join a chat group of women in the south of the UK. A support group of women in the same position. I joined and within a day I had 76 messages of hello and support from this group of strangers. I felt rather overwhelmed. Lots of ‘Hello Louise!’ ‘Sorry you had to join us but we are here for you!’ type messages. I have since received a constant stream of posts from members of the group chatting to each other. I don’t really understand facebook at the best of time, but it has been non stop and all posts seem to land in my email inbox. I worked out today how to stop this happening. I am not sure I want to be part of that group anymore. The last post I read before going to bed last night was ‘Help. It’s in my brain! What am I going to do? Scared’. This morning it was a depressing one from a women saying what a terrible mother she was and how could she have done this to her children. I couldn’t help myself and spent some good time scanning the posts – all quite depressing stuff ‘Buying a wheelchair – any ideas?’; ‘liver resection – worse than childbirth’ ‘Running out of options’. Not surprisingly I felt low yesterday – it’s like being invited to an exclusive group you really don’t want to be part of, yet these women are all managing a whole range of physical and emotional and social issues just like you – but somehow I need to feel apart from this. Slightly exclusive. I am going to be different. I am sure they all think the same.

Scan tomorrow. Will I be an A*student or will it be more of a B-/C….?

Writing two days later....Had my sixth chemo today (19th March). Imagined my scan would be about a week afterwards but no – it is tomorrow morning at 9am. Gulp. My white cell count and neutrophils were good today – better than last week and best so far on chemo – which is testament to my diet, supplement and moxa regime. This means I will avoid white cell boosting injections if we can keep it up. We have the power…

March 10, 2015

Telling the Children – again…

March 10, 2015/ Ella Howes

I have been trying to work backwards to get the sequencing right. I had the endoscopy on January 22nd, a Thursday. It was Tuesday 27th January that I had the ultrasound and found out what had been going on in my body. That week I had a parents evening for William and his birthday on the Saturday. Rupert and I needed to try and absorb the news before we would know what on earth to say to the children when we didn’t really know what it all meant for us. We knew we didn’t want to ruin the joy of Williams’s birthday and so agreed we would tell them on Sunday 1st February after a family walk on the Downs. Ella was on her carefully planned year off, volunteering and learning Spanish in Cusco, Peru and was due home in a few weeks before the second part of her travels – to Asia.

How do you tell children news like this? I went to talk to Lynette who helped us. Always tell the truth. But the reality is the truth is full of unknowns. The truth is that the cancer has come back, that the doctors are going treat it like they did last time and they will be working very hard to keep treating it. It would not go away but there were lots of things they could do. In a later blog you will hear more about what I believe doctors can in fact do (possibly help treat the symptoms –but not the cause and that is something that I must do).

We were not sure if we should tell the boys first or Ella and agreed that we should call Ella as we did not want her to hear anything via her brothers without talking to us. On William’s birthday we had been to the cinema and then to have a pizza (I was already, at this point, avoiding all dairy and meat – which limits your options in Pizza Express – so I had a not very delicious plate of broccoli). We called Ella on the Saturday morning (Peruvian time). She was far from home and was very tearful. She said she was coming home that evening, and tried her very best to do so but it was too late in the day in Cusco and with travel agents. We tried to encourage her to stay a little longer and say goodbye to people. I can’t believe I actually thought she might stay there. In all of this guilt has been an overriding feeling for me. Guilt that this news has / will profoundly impact the lives of my children, my parents, my siblings, my best friends and of course, Rupert. So Ella’s immediate response to come home was the first very tangible example of this. Already the course of her life, as I (and I am sure she) had imagined it, was changing. She had worked for months at Subway, making sandwiches and babysitting when she could to earn money for her travels and she had planned so carefully and with such excitement. She booked her return ticket and we had her home by Monday. She is now my constant companion and we are exploring the world of cancer and strategies to live together. Her presence has grounded the boys, she replaces my spirit in the home when I am not feeling 100% with the chemo and she is a second mother figure for Ned.

We told the boys later that day over lunch. As with the last time I had wanted them to see Rupert and I interacting in a normal way, I wanted them to see that we were coping, as how we were, as I knew from last time, was so important in setting the tone for their reactions. There were tears and hugs and more tears and questions. But no tears from Rupert or I, we were positive (as I am) and just repeated that while this time they could not get rid of it completely we would be fighting it and I would have treatment, but that things would change. They asked if I was going to die, Ned did, and I asked him to ask me if I would be run over anytime soon. To which of course the answer was, I hope not and I don’t know. They clearly needed reassurance that I wasn’t going anywhere anytime soon and we told them that if we ever thought that was the case we would tell them. The tears subsided and for the following couple of weeks there were a stream of questions, not from all of them as a group but one on one. Having Ella has helped as Tom can ask her whatever he wants and I think trusts that she will tell him how it is and I think this gives him some reassurance. In my heart I know that I have opened up a new possible future in their brains, one without me, but I know they will have time to come to terms in some way with that possibility with the security of my love and Rupert’s love around them to consider this future.

I had called William and Ned’s school to let them know the situation so that they would be ready to put in place the necessary support systems there. William is quite self-contained, he has been more demonstrative with me, kisses and hugs, which he was never so free with and he has asked me more probing questions about the cancer and the treatment, but he has not discussed it with anyone at school (at least no adults and I doubt even any of his friends). Ned however had 2 or 3 wobbly weeks, needing to leave class a few times to go and sit with matron. He has a lovely friend from his old school who has been keeping an eye on him and she would accompany him to matron and sit with him in class. One time he said he was looking out of the window, and he thought about me as a young girl and that made him cry. He is in Year 7 and instagram seems to be how they all communicate. As he constantly loses his phone he has installed it on mine – so I get to see what is going on (!). There followed a whole range of ‘Kill Cancer’ type posts from Ned and responses from his friends. One read something like ‘ I wish cancer would get ebola and die’ which attracted lots of ‘yeah die cancer die’ from his instagram ‘friends’. He did a fundraising for me. Actually it was all very secretive and I am not sure he told those donating that the money was for me, it was for cancer– but I benefited very directly. He collected a tin of coins and took Ella into town with nearly £100 worth which he spent on new pyjamas, lush soaps, candles and more for me. The boys are all very gentle with me and it is certainly much easier getting them to pick up the clothes off their bedroom floor or go and walk the dog. They have also had me around more than they have had for a while as I work from home during the chemo weeks to avoid getting trains. My neutrophils and white blood cell counts are very low. As I have had chemo before my bone marrow is struggling – so I am avoiding unnecessary germs.

We are planning a few trips. I am not quite ready to detail a bucket list, but I am quietly noting things I have always wanted to do. One of them was to go to the theatre more and since diagnosis I have seen Swan Lake, the mouse trap and Saturday Night Fever. We are also getting more organised to try and find dedicated time for Rupert and I to have some time together – booking that weekend away etc that never seems to happen when life is so busy. We are looking at organising a trip to Thailand or somewhere with good vegetarian/asian food, yoga and massage, over the Xmas holidays. This is likely to break the bank (another of the bigger questions we have to face as a family) but I will I hope be fit enough to go and I do not know how many of these opportunities we will get. Many, is the plan, but we need to plan for all scenarios. Also on my list of things to do includes to knit something, something that could actually be worn. I am very good at half-finished scarves. I cannot actually name anything, other than a scarf I made for a teddy bear, that I have ever completed since knitting classes at school, but I enjoy knitting. I have also begun to investigate the world of oncology, drug regulation and how the current system of approving new drugs is simply not fit for purpose and is far too slow to keep pace with the science. More on this later...

March 04, 2015

Goodbye Hair

March 04, 2015/ Ella Howes

So I went into London to work on Monday. Having lost more hair over night my only option was a white beanie hat to cover the growing bald patches. With some earphones I could have passed as a rapper - I wore this all day. I traveled up to work with a friend who offered her husbands services - as he had short/bald hair and had the right equipment. I am not sure she could believe how quickly I snapped up the offer and that evening after work they both arrived at my house ready for action. We set a chair up in the middle of the kitchen floor and the hair removal was a great family affair with Rupert and the kids (and dogs) all actively part of the process. I am going to try and post some photos - before (with the white beanie hat), during and after. I will also add one with my new look.

I went with Ella and another good friend to Trendco, the wig go to place in Hove, yesterday and we tried out loads of different wigs. I really thought I would come away with two wigs, a blond and a dark one. I know when the hair comes back it will be dark so I reckoned why not go dark now rather than wait for the end of treatment - to make the transition less obvious. But in the end we all agreed on a wig which is totally not what I expected to choose - a reddish colour. We took some photos so I could send them to my sisters, brother and parents - just to test it out on them. I am not sure what they really think, except for my mother (a red head herself) who is totally keen on having a red headed daughter at last, but they were polite enough.

The only person who still does not know is my poor husband Rupert - he is on a work trip in Norway, and possibly stuck there as Norway Air is on strike, and despite having sent him the photo he has not responded. Too late now as I have just bought it and it is sitting on the polystyrene model head by my bed ready for a day out. Imagine that, you leave and your wife is blond - come back and you are married to a red head (actually that scenario misses the bald stage in the middle). My best friend Sophie thinks I look a bit too grown up in it. The problem is wig shops do not have a 'frizzy scarecrow' line in wigs so it was impossible to find one that looked remotely like my old hair. This is the new me.

March 03, 2015

Free flowing tears March 2nd 2015

March 03, 2015/ Ella Howes

The first two days were the worst. I took a valium to help me sleep on the second night – the demons come out at night. We had William’s 14th birthday on the Saturday and had a full day planned. The thought of telling them anything before then was too awful so Rupert and I kept it to ourselves and a few close family and friends. I didn’t cry at first, Rupert did. In the meantime I had been searching the internet, buying books, reading cancer survival stories and began putting together what has become my action plan for living. On the third day since finding out I sat in bath and bawled. But it was not miserable, woe is me, cry it was just free flowing tears which I had clearly been holding back and they simply needed to burst out. It was a gulpy, snotty, tears rolling down the cheeks cry. I felt invigorated after, and cried on and off much of that day. I felt liberated and free somehow.

Of course my first internet searches were in the pursuit of determining how long might I have? It felt as if this would then answer a range of other questions about what I do next. Do I stop working? Do I start writing notes to my kids? Do I finally organise the family photos which are in state of chaos – some print, some videos on out dated tapes or disks and others on computers and clouds. Do I wear pink and run marathons? I think the crying on the third day, was triggered by the daily reality of life. I woke up just like every other day. And I was still here. What to do? I felt the same. I looked the same. Hmmm. I might die. I will die. What in fact was different to a week ago, except that it was more abstract then.
I have since been reading inspirational stories of survivorship and approaches to take some control of supporting your body to become a place that cancer cannot thrive in. Which in practical terms means I am now a vegan, organic where possible, non alcohol or caffeine drinking person, doing yoga – at times at 5 in the morning (apparently the most powerful time of the day) and taking a number of supplements which we have researched. There will be more on this later as it rather dominates my everyday life at the moment in an attempt to find food that inspires and keeps me well nourished during the weekly chemo.

In the meantime I have been overwhelmed with love and gifts from across every branch of my life, family, friends, neighbours, work. I went to a boarding school and spent the ages of 9-17 with the same group of girls, almost all of whom have remain connected and form a powerful support group. I have had a steady stream of presents from them (ugg boots to help with neuropathy from chemo, make up, books, supplements), letters, recipes, distractions (breaking bad, music cds). I have also been sent spiritual support from all over the world, I have a reiki crystal I wear round my neck, a rosary, holy water from Lourdes, a Japanese prayer, holy oil I have to administer to the liver area before going to sleep. I am being prayed for in Nepal (with medicine pujas), Colombia (a prayer network), Nigeria, Tanzania, Sierra Leone, America, New Zealand, Spain. Pretty scary stuff for those cancer cells. They should be very afraid. I have local friends going to great lengths to seek out organic ingredients which they cook (either with me – rather with me as the student, being not the world’s most natural or able cook) or that they drop off. I am incredibly lucky.

Treatment
In the first week, days after being told and as I was embarking on my new diet (which at the best of times would have been hard on my body – as it was akin to a major detox) my oncologist organised a liver biopsy so they could confirm the characteristics of the cancer. This was booked on the Tuesday, two days before my first chemo. It involved having a local anaesthetic and a probe (forgive my non medical terms) being inserted through my back, just under my ribs (I lay on my side) with the aid of ultra sound so the radiologist (actually not sure what he was) – could see and aim for a tumor (I was not liking the idea that there was one big enough for him to actually aim for and extract – I thought salt and pepper sounded better, a bit smaller). But clearly there were at least 2 places where the tumors were big enough to extract a sample from. He went for the one near my back. After a few tests, with me having to breath in synch with him, he took a biopsy – and then a second. I felt I had been pretty calm throughout (I had the support of Lynette who used to be my Macmillan nurse but who is working as matron at the hospital I am being treated at – by coincidence and who has stepped in as one of a number of angels who surround me). The pain after the procedure I found unbearable. The liver does not hurt but the capsule around it can swell which puts pressure on nerves – which can result in deferred pain in the shoulder – which is quite weird – but I experienced it so it must be true. After an uncomfortable roll back to a recovery room and a delay while a morphine prescription was being organised, the pain was brought under control and I spent the day lying on my side, partially snoozing.

My chemo day is Thursday. Last time I had chemo one of my main chemo nurses was called Lou. She was loud and fun but my last words to her were that I hoped I would never see her again in this context. Lou is the main chemo nurse at the chemo unit I now go to. So I weirdly have the almost exact team I had before around me – chemo nurse, breast care nurse, oncologist. Lou is efficient, practical and makes the process as painless as possible. Last time I had a port in my chest. This time I have not had time to have one put in so they have been finding a vein in my right forearm or hand each time. I think they do not think this is sustainable as the veins can collapse and it is more tricky having to set it up each time but I like not having a port. This chemo takes only one hour to administer, plus half an hour before hand for the pre-meds (a steroid, piriton, an anti sickness and something else I can’t remember what). On top of that I have been enduring the cold cap. Which for those of you who read my blog last time, is a surprise – as last time the cold cap was utterly unbearable. This time I am fortunate for a new cold cap technology called something like Dignity – I can tell you it is absolutely not dignified in any shape or form. I will post a photo as evidence. It is more comfortable than the earlier version. Together with a shorter chemo session, meaning I only need to wear it for a total of 2.5 hours, has meant I have successfully completed 3 chemos with the cold cap.

I have to say I have felt pretty proud of myself. An extra incentive has been my excruciating experience of actually having to endure having not only dark brown hair (that no hairdresser will touch with dye for ages after the chemo), but curly brown short hair – my social worker look (sorry social workers). Really – do I really, really have to do that again. That makes me cry. I thought I perhaps had avoided this. But not so. Over the last 3 days our house resembles a hairdressers at the end of the day. Hair in my mouth, on my shoulders, in the food, in everyone’s food, over the floor, on my pillow, in my hat. I hoped perhaps it was just the ‘thinning’ that can ‘sometimes occur with the cold cap’. But the hair just keeps coming out.

I booked an emergency appointment with the hairdresser to salvage what we could. I had not washed my hair for 10 days to avoid losing pieces unnecessarily. During the salon hair wash (in a private space in the hairdresser – both for my own privacy but also I realise I would not have been a good advert for the place) the hair continued to come out. I had two people trying to then brush the remainder, minimising the pulling. But on and on. I left with a bald patch at the top of my head, a parting that looks more like a river than a little stream, the top half dark new growth – roots which would normally be coloured – and the bottom half dry, dead, scraggly, thin hair. The hairdresser was clearly skilled at working to make thin hair look as big as possible –and a lot of diffusing and puffing went on at the end. With a hat, I have enough hair that it is passable as hair. But it continues to come out and going out with no hat or bandana is absolutely not an option. So I have an appointment at Trendco – the wig and bandana specialists. And I think my fight for my hair may soon be over. The question now – is wig or bandana? Which wig? How about having multiple personalities, bald one day, ‘clarissa – the brunette’ (the wigs all have a name) another, ‘kimberly – long and blond’, the next and a few bandanas in between….

February 27, 2015

Rudely Interrupted

February 27, 2015/ Ella Howes

Where to start? I am not really sure. Probably the best place to start is how I came to know what I now know. That my breast cancer has returned. The last time I wrote this blog I described how I explained my diagnosis to my children. I drew a line – which represented not so bad at one end and very bad at the other end and explained how lucky I was because while getting a breast cancer diagnosis was not good, I was lucky because I was pretty much close to the very end of the not so bad end of the line. The tumour was 1.9mm, grade 2, no lymph node involvement and no vascular invasion (sign of the tumour making its own blood source). My oncologist indicated that not having chemo was certainly an option. But at the time, with the children between 7 and 13, I chose chemo. I did not want to find myself, where I am today, imagining I could have avoided it, if only I had had the chemo. But it came back anyway. I was in my 5th year post diagnosis.

I am now at the other end of that line. But what I am learning is that the end of the line is unknown. That advanced breast cancer is a game of cat and mouse. That it is described as advanced, not terminal, because at this point in the game who knows where the end is. And this is where my journey is taking me. Who really knows when the end is? What was my future? I simply don’t know and I never did. It was a series of aspirations. Imagined scenarios. Certainly how you imagine your future influences how you live your life today, in an attempt to move you closer in that direction. But the unpredictable has a way of interrupting the very best of plans. And so my blog is changing its name. For this round two it will be called - Rudely Interrupted. There is no other way to describe it.

Since September last year work has been absolutely full on exhausting. In October alone I visited Mwanza in Tanzania, Kano, Nigeria and Seattle. I was drawn into the Ebola crisis in Sierra Leone on the back of our work to reduce maternal and newborn mortality there. This involved inhumane deadlines for proposals to support the laboratory system in Sierra Leone and start implementation almost over night (as well as over Christmas), followed by another rapid turn around proposal to establish community care centres as part of the UKAID response. The proposal went ahead and the time and energy that required, but in the end the tender was dropped despite the level of effort to design an emergency response in a very short timeframe. I love my work and the period from September to January is always super busy but this stretch hit me hard. I never really recovered from the travel in October and took this as the impact of the travel, time zones, impact on family and simply load of work. But perhaps I was already fighting a battle inside that I did not know about. The first outward symptom was sore, sensitive and incredibly dry skin – all over my body, not just on my face or arms. In November Rupert and I went out for dinner with neighbours and that evening it seemed to move up my body to my face. I knew this was not just dry skin, it felt something systemic – I can’t say I imagined it was what it has turned out to be, but I certainly felt something wasn’t right. I went to the GP once before Christmas but with nothing much more than a non specific skin issue. It continued, getting better at times, over Xmas but it did not resolve itself. I went back to the GP and asked for blood tests. These came back ‘satisfactory’ and for a while I felt slightly relieved. But the skin issue did not resolve and I had lost my appetite for alcohol. I also had occasional heart burn. I was due to fly to Malawi and Zimbabwe, but the day before leaving my skin was particularly bad and I wondered if I even had a temperature. The last thing I could do was travel across Africa with a temperature. There are ebola checks at every boarder (these basically involve filling out a form and having your temperature taken). I did not want to get stuck on one of the many change overs with a temperature. So I cancelled the trip last minute. I went back to the GP for a letter for insurance but also asked if he could refer me somewhere else as I was not happy – something was going on. So he sent me to a gastroenterologist who booked me an endoscopy and then an ultra sound.

The endoscopy, which I had with no drugs (yuch), showed slight inflammation of my duodenum. Again, for a short while, I felt relieved, I had a possible explanation for what was going on. I wanted to fit the puzzle together and this sounded a good way to go. Until I looked more into duodenum ulcers and realised that I had none of the underlying reasons (the HP bacterium which I was told I was negative for, and long term use of eg painkillers). I had some nagging doubt, but imagined that the gastroenterologist might have a reasonable explanation – you can’t find everything on the internet surely? So by the time I went for the ultrasound I was not really expecting anything in particular and imagined that he would already know what was going on , this was just to confirm it. So that evening (my appointment was at 5.30), Rupert was at work, coming back from London later as usual and the kids were at home, I was due to go back to give them supper. I went on my own.

I lay down, and after not very long time noticed the radiologist was not looking happy. I asked immediately what he could see, and in the same breath told him I had previously had breast cancer – a fact the gastroenterologist had failed to note on the referral. The radiologist, who subsequently did my liver biopsy, just came out with it. He was not happy with what he could see. He was a cancer radiologist and what he could see was what looked to him like breast metastases, salt and peppered through my liver.

I have always had a fear of the breast cancer coming back in my liver. And it had! It was so unreal. I almost started hyper ventilating, it was speed within which my reality had suddenly changed so dramatically. They located the hospital based breast care nurse (who I had known from previously) quite quickly and she came in to be with me. They kept asking if there was anyone I could call – but I simply couldn’t think who on earth I would call with that news, right then. Rupert would be on a train and telling him something like that as he sat far away from me on a crowded commuter train would have been cruel. I think I did in the end call him. The news was cruel. My oncologist happened to have a clinic that afternoon and they took me to him. He recorded the conversation, which I have not listened to again. It went something like this. Acknowledge that this is shocking news. This means that they will not be able to cure it but they will be able to treat it. There are all sorts of rungs on the treatment ladder and there are drugs he is using this year that were not available last year. I would start chemo therapy the following Thursday (10 days from then). He would use a drug called Pacitaxel. I would need a CT scan and after that I may have a liver biopsy so they can absolutely 100% confirm that it is breast cancer and they can be sure what its characteristics are, as this would determine subsequent treatment. The primary cancer had been oestrogen positive and he wanted to confirm that it still was. Cancer is a stealthy bastard and it can change and morph and it learns to become resistant to drugs and has been known to change even basic characteristics, like its hormone status.

I waited on a chair in the lobby of the hospital with the breast care nurse, clearly not happy to have me go home on my own. I called my elder sister Clare. Then I went home...

July 10, 2011

Life after Treatment

July 10, 2011/ Ella Howes

Life after Treatment
June 30th 2011

Almost 5 months on from my last radiotherapy treatment – and I have not updated my blog since my final chemotherapy. I had a good 8 week wait between the last chemo and the first radio appointment – as there is a wait in Brighton (there should be only 4 weeks wait). Radiotherapy involved a pre-visit to take all my measurements so they could calibrate all the lazers. The process involved tattooing 2 small dots on me to use to make sure the machine was lined up properly each time. One of these dots is around on my side and I can barely see it even if looking in a mirror as it is in such an obscure position. The other dot (a blue one) is smack in between my breasts. It may not be immediately obvious to an observer not wanting to focus too closely on my cleavage – but I can see it very clearly. My eyes are drawn to it every time I wear something that is even slightly low cut. A slightly odd coloured (very symmetrically placed) blue freckle cum mole? Something for me to remember it all by. I wonder if one day someone with a similar blue tattoo might not recognise mine – and we will give each other a knowing wink.

There was a confusion about whether I was to have radiotherapy 20 or 15 sessions – but in the end I had 15. One a day for 3 weeks (excluding weekends). My appointment times varied each day but were generally towards the end of the afternoon. There was a groundhog day feeling about each visit after the first. I would arrive, get sent to the relevant waiting room (there are about 5 machines so more than one waiting room), sit and wait and look around at the others all waiting. There was a very collegiate atmosphere – huge kindness – we all knew why we were all there. Everyone had their own story. I never spoke to anyone about theirs though – we would talk about all sorts of other things – but not why we were there. The longstanding joke (as I would often meet the same people who clearly had a similar appointment schedule to mine) was to nod to one another on arrival in the waiting room and greet each other ‘Fancy meeting you here’.

The radiotherapy machines are huge, with a laser looking part – which revolves around you when you are lying on the bed (a hard metal bed not a soft comfy one). There are no curtains so you feel quite exposed. As you walk in the room there is the machinery and at least two staff in the centre and to the side (with no curtain) a chair. This is where, in full view, you have to take off relevant articles of clothing (which in the winter can take some time) and then walk across the room semi-naked and climb onto the bed and lie down. I would put my left arm above my head and then the radiotherapists would prod and poke me gently, shuffling me around until I was lined up in exactly the same position each day. This was the longest part of the procedure. They would then disappear into a little room – and an ‘ON AIR’ type light would flash so you knew when the treatment had started. You can’t feel anything but you can hear a high-pitched noise while the laser is shooting radio waves (?) into the right place. To make sure they get to where they want exactly they need to get at it from various positions – I had to stay dead still – holding my breath so I would not be radiotherapied on parts that were not meant to be hit – and the machine would reposition itself. It did this 3 times – and in total the actual time during which the radiotherapy was being administered was probably just over a minute and a half. Each radiotherapy room had something different on the roof to contemplate (my favourite was a picture of blue sky, branches and leaves) – and there was always music in the background. The radiotherapists would then come back in when safe – I would get dressed and it would be someone else’s turn. And on and on.

I was lucky and did not feel too bad through it all – it does make you feel rather drawn – but then I am not sure if this was more to do with the fact I was at the end of 6 rounds of chemo. During the last week I got a gentle sunburnt tinge over my breast and surrounding area (this showed how much of me the radiotherapy was covering – as you cannot feel where it is hitting I was surprised at how much of me it had targeted).

The main issue around these 3 weeks of radiotherapy was the atrociously cold weather. So even though relatively warm – removing your clothes in a big open room was pretty chilly. Worse were the 3-4 days when the snow and ice was so bad that it was not possible to drive anywhere in the city. We had been given instructions about what to do in the event of snow – which were that, if you lived in Brighton, you should get to the unit as early in the morning as you could – as all those from the surrounding area – many who had to travel from quite far every day – would have trouble getting there in the morning and would therefore only be able to get to the unit later in the day. The only way for me to get there on those days was to walk – about hour there and back again. The appointment system basically went out of the window on these days, so the wait was huge. On one day I waited over 4 hours. I was lucky though as I could get there. Many were coming from places which were impassable. Even those living in Brighton, but with limited mobility, had trouble as the council did not even clear the main road that runs up to the hospital. Only the roads directly outside the hospital were cleared – by the hospital.

I finished the radiotherapy about 4 days before my 40th birthday. Which as you know had been planned for many months. It would be a wig party. All but me had to come wearing a wig. Just to make sure life didn’t get too easy for me however – the 18th December was the worst day that winter. Much of the country became absolutely impassable. The snow in Brighton was heavy very early in the morning, but then settled and even started to melt – but not everywhere else.

Most of the day was a series of phone calls from friends and family saying they were unable to come because of the snow. I tried to sound as understanding as I could but through clearly gritted teeth – hugely disappointed. At one point it looked as if even people who lived in London would not make it. My friends from Spain all arrived on the Friday before things got really bad – but many from far closer could not get out of their roads. The party, which we held at our favourite restaurant in Brighton, was just fantastic. So many people I had not seen for so long – nearly a year for many as I had travelled only very little since being diagnosed and since radiotherapy not at all.

That is a small lie. I did travel to Cambodia and Nepal between chemo and radio therapy, but that is different as it was work and I saw only friends and colleagues who I work with. I had read that the most difficult time for many women who have undergone what I have is the time after treatment, suddenly feeling unsure and lost – wondering where to start again – could they just carry on as before. Should they? No treatment, no appointments – just life again. I worked all through treatment (with a few more days than normal off of course) both because I love my work and we had so much on but because it felt normal. But also because I knew that I would have to go back to normal again soon after, so this trip was part of preparing for that also. It was also the first time I had been on my own since diagnosis. I have been incredibly well cared for and loved, but I have had to be strong and together for the children in particular, who were beady eyed for any sign that I might be lying to them by reassuring them that it was all ok and I was going to be fine. The household mood was very much linked to how I was and if I was perky and happy the household was. I was in fact pretty happy all the way through so it would be lying to say I have spent the last few months putting on a brave face, but I did not have time on my own to just think. I had been driven along with hardly time (rather I had the time but it was not the right time) to look back and reflect and just try and work out what it has all meant. What was all that about?!

The party was wonderful and enough of those I love were there to celebrate. Most had not seen me for quite a long time and so had not seen me with no hair. My hair by 18th had grown just long enough to wear without a headscarf. It actually looked pretty funky. It was brown – which I always knew it had become over the years but had never accepted this so had never actually lived as a brunette. Since then it has grown, and not only is it just brown, but it is ridiculously curly too. I look completely different. I have had to say to quite a few people who I know less well, but have known for years, ‘hi it’s Louise’ – as they have simply looked through me – completely unaware that it is me. My mother in law, who also did not see me with headscarves, said the first time she saw me with my new hair that I looked like me sister. Not my actual sister – but it was as if she was talking to a sister of mine.

After the party, we had a Christmas at home but then flew to Egypt for 10 days – to Sharm el Sheik – where a shark had recently killed some poor German woman and mauled a couple of others – so the sea was closed. This felt an appropriate end to a rocky year. We needed time as family to just be, no phones or blackberrys, work or school or doctors/nurses – just a pack of Uno cards and some time. It was not as warm as we would have liked but food was cooked for us and the only decisions we had to make were about what we were going to do that day. The pools were pretty freezing. I was determined to try and start getting fit as my body was rather flabby and yucky after all the poisons and steroids and lack of exercise, but the only way I could get in the water was to go down the children’s slide. Once you were on this corkscrew shaped slide there was no chance of turning back. We visited Luxor and saw the Valley of the Kings, went on a small boat on the Nile and went on a trip on buggies in the desert. Sharm itself is one long string of hotels catering for relatively cheap holidays in the sun – very little Egyptian influence at all – more of a package holiday fest which huge numbers of Russians.

Back home and life started pretty much as normal in January. The kids went back to school and Rupert and I back to work. I felt physically very well, perhaps a bit tired sometimes. Rupert still worried and worries about me but I am pretty tough. I am taking tamoxifen everyday, some side effects, but not so bad. It is now June. The time since January has flown by. It has been very mixed. On the one hand it was so easy to just slip back into life as normal, but always in the back of my mind was the question What was it about life that got me where I am? Yes, I am always juggling a million and one things – but I am happy. It is hard to describe but one moment I am getting on with normal stuff and then it hits me and I have a little peak backwards – and there is an overwhelming Wow! What was that all about? And then a bit of anger – how dare it interrupt my life so rudely like that. And then – maybe it is telling me something? What is it telling me? Is this where I radically change my life? Was this a sign to clear out and start again – give up working, learn to cook properly so I can bake those cakes I have never been very good at baking? Change career? I certainly learned over last year how many wonderful people I have in my life and how easy it is to be always going just too fast to fit them in and just spend time. But then, I think, if I give up work I will not be me? We won’t be able to pay the bills like we can now and then life would be stressful. I think it has taken me this long to write this because I find it hard to acknowledge, I am not sure I want to think too deeply about it all – although it is difficult not to. I don’t think I block it out I just keep moving forward, possibly this way it won’t catch up. I know I do need to address it, and I have begun to. I have every chance that I will live to a ripe old age. But in the back of my mind is my grandmother’s death from breast cancer (liver) 7 years after her breast cancer – and that is always lurking in the back of my mind.

It is also true that I did consider that I might die. I didn’t do that for very long once we knew how bad (or not so bad) it was – but it was long enough and I am not sure you ever get over that. It is not a bad thing – and I am truly not scared. I used to think I would be, I have always been a bit scared of dying. But in those early weeks when I had only general statistics to go by (and almost daily stories in the media about someone dying from it) I was upset. It has been like pinching a nettle. If you brush it too gently it stings – but give it really good squeeze and it doesn’t hurt. It is lonely as it is not easy to talk to your loved ones about all those thoughts and Rupert and I rarely did. The only person I did was my Aunt, as she had had a more serious diagnosis,we talked about it a lot. Not in a sad way but we would really just explore what it meant and would mean. For her, early on, it was about seeing the garden shed finished and the flowers she had planted. I was working on a 5 year time line – the what if I was one of the 25% that did not make it to 5 years (this is before I had my own individual risk worked out). I thought of Ella who is 14. Were I to make it til she was 19 I felt that she is such a together girl, although devastating to lose your Mum – she has such a steady and strong character and foundation that I believed she would still flourish in life. Tom, still needs me and I wondered if in 5 years he would have grown up and grown stronger and more independent. William is also such a together little boy and I often feel is the least needy of me – he talks the least to me about how he is and his feelings – although he talks to me a lot about something he has read or learnt or watched. Then little Ned – who was 7 – five years would make him only 12. And that is not long enough. I don’t think of these things now – but I have to acknowledge that there were times early on when I did think about them – and when I would go into organising mode and start thinking about how I would organise my life if it was to suddenly be shortened dramatically. For a long while if Rupert pointed out some cottage in the property news as if we might one day live there – I would stay silent - that idea of ‘one day’ seemed under great threat and I felt I could only cope if I kept discussions and thinking within a closer timeframe.

Over the last 5 months my thinking has been different. I do occasionally think what if? I get a twinge somewhere in my body – almost certainly completely unsuspicious – but it just does not leave you – a tiny part of your brain starts to think ‘what if?’. I started to find that what might before have been a mild upset at work or home would take on a greater importance. One piece of work upset me disproportionately. Something I had worked on for nearly a year looked as if it might not happen in the end. This happens in the frustrating world of development and politics – but I felt so furious that I should have given all that precious time to this endeavour. I felt angry that it was upsetting me so much. I felt stressed and then stressed that I was stressed as I worried that this might get all those abnormal cells jumping – and angry again that how dare anything make me stressed. It was a blip but I think it was a culmination of me just coming to terms with what had happened. I had started overanalysing everything (and do still on some level) – particularly what I eat and drink. Do I have a second glass of wine? A pudding – too much sugar? Clearly something in my life had contributed to my cells going mad – so just eating, drinking and living as I had before did not feel right yet I was not ready to go on some dramatic diet – I did not want to be defined by my illness. Eventually I started reading a book I had been given when I was having treatment but I was not ready to read. It was written by a Doctor who himself got cancer, which then came back after 7 years. It is really a book about diet, lifestyle and stress – and I was now ready to read it. It became a sort of therapy. He goes through different foods and talks about the science behind their powers – eg green tea and tumeric (with black pepper) – incredibly powerful at fighting tumors. The basic tenet of the book is that we all have cancerous cells in our bodies – but that most times the immune system just keeps them under control – and that 85% of cancers are avoidable. What we eat? What our bodies ingest – toxins etc? how we live. All so obvious, but he wrote it in a style that is so logical. It was a revelation. Maybe I was just ready to listen. I have not gone mad but I have now taken a number of steps informed by this book and another I am reading – and since then I feel back in control. I feel well and I honestly believe that I have a role in keeping what he calls my ‘terrain’ completely hostile to cancer cells and my immune system strong. The changes I have made are quite simple – but all quite easy to incorporate into life without feeling as if you are depriving yourself of anything (well not too much). These include: changing my deodorant to a non aluminium one; using a water filter; using a stainless steel bottle to carry around water; buying organic most of the time; reducing dairy and using organic where I can (I am not prepared to give up my morning latte); reducing wheat intake – which I did already – and now barely eat pasta and only little brown bread occasionally; increasing intake of non processed foods; grains and seeds; reducing intake of sweet things generally (including fruit juices); using creams and products that are either eco friendly for the house or natural etc for body and face (I have since heard bicarbonate of soda is good for washing hair - so will try this); reducing dramatically meat eating; uping exercise (this is hard but I have to be strict with my time) and I am working on the ‘mindfulness’ bit. One writer suggests that a first step in lowering stress (if you find slowing down hard) is to act relaxed – that way tricking your body so your heart slows, your breathing and the rest of your body also. I am still at this first step. I am fast through and through – so this is really, really hard – but am working at it. I often find myself curling up my toes or with my hand squeezed into a fist or fiddling with something. I do a tense check now when getting into bed – and uncurl my feet and relax my hands. I find my brain less easy to control – but am working that too. It goes ten to the dozen – but when I manage to declutter it I have inevitably forgotten to do something – as a bit like a juggler – if you lose concentration on one call you drop the rest. So I have to learn to do this mindfulness thing and not drop my balls.

The last thing I will write about is my brain. Certainly during chemo, during the days directly after a session, my brain just slowed down. I could think and talk but it was just fuzzy and slow. I began to frequently completely forget words – words of everyday household items and even people’s names which I really should know. I started to learn piano as a way of trying to give my brain a workout. I did my Grade One at the same time as Ned. My exam was during radiotherapy (that’s my excuse) – but I found it completely terrifying and I felt ridiculous. A boy of about 12 was in the waiting room before his exam practising his hugely complicated grade 5 exam piece. Ned, who was 7, was totally unfazed. He went in before me. By my turn I was all in a fluster. The examiner was around my age – made me feel even more ridiculous. She started me on a very very simple piece – C contrary motion – honestly very straightforward. I relaxed a bit and went for it – no mistakes. Then I heard her asking kindly if I wanted to do it again but starting on C? I had blindly looked at the keyboard and started on B. From that moment my fingers started shaking – and I managed to hobble through the rest of the exam. I did pass. I wonder how much she just felt sorry for me and wanted to give me some encouragement to keep going. But I am stuck on doing the scales hands together already. I think this is really old brain and old hands rather than chemo – but I do still have moments when I simply cannot think of a word, or I lose my thread and honestly know I will not find it again – it is as if it just vanishes from my brain. I have tried to read about this as an effect of chemo and there is an effect on the brain – but I cannot find anything that tells me if it goes away. I like to think it will if I just keep doing some brain exercises to keep those synapses rejoining and sparking and jiggling.

Apart from my frizzy brown hair, I feel me – just a slightly different me. I feel calmer and am more focused about taking the right steps to deal with situations in a way that will keep me calm and detached where necessary. I feel different – deep deep in my soul different. I marvel at how lucky I am and wonder if all of this was one big lesson.

Cancer is Pants

Cancer is Pants

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At Sea….hot flushes, night sweats and memory issues

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Emotional Roots and Spontaneous Healing May 25th

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Spontaneous Healing

The strange story of my left breast

What is the best way to go?

An Ordinary Day

Fight Cancer from every angle

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Therapy and Treatment (more detail!)

A thank you ROAR for your generosity and love!

Every Boy Loves His Mum – The Tobjizzle phenomenon

Radical Remissions, Art, IP6 Gold and Dead Chickens

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Mind Body Spirit Emotion - Penny Brohn Centre April 4th 2015

Scan Results B/B

The Scan, Dr Who, the Numskulls and Ghostbusters

Scanxiety, treatments and a club I am not sure I want to belong to….

Telling the Children – again…

Goodbye Hair

Free flowing tears March 2nd 2015

Rudely Interrupted

Life after Treatment

Cancer is Pants

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