Jackie Collins, Erin Brokovitch and Parasite Cleanses

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

I

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

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

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

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

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

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

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

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

It would be gripping! 

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

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

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

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

PS Check out this 

        The shameful past

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

        Robert N Proctor

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

        Received 5 July 2011

        Accepted 22 November 2011

Abstract

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

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

Bucket list, memories and treatment up date.

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

August 1st Mallorca

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

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

15th September 2015 Brighton

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Quack cures or genuine alternative therapies and scan results

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Johnathan Chamberlain pg 397 The Cancer Survivors Bible. 

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

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

Also check out www.lowdoesnaltroxate.og. 

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

Ella’s Birth - Joy and Trauma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

PET scans, radiation and old age

On 23rd June, a Tuesday, I had my first PET scan. In fact it was a PET/CT scan, which I think means they do both at the same time so they can compare and contrast. Each one gives a slightly different perspective and given the cancer in my liver is being a bit mysterious, the plan is to get as good a picture of what is going on as possible so that there is a reliable baseline with which to determine change over time.

It is being mysterious in that from a plain CT scan it looks the same as it did before the chemo started but that over this period my liver bloods have returned to pretty much normal. So what is it doing? It is there but not doing much? I know this is what they call stable, but it is still a strange concept. If cancer is essentially cells dividing out of control, does this means that over the period of my chemo my cancer has sort of gone to sleep? It is just sitting there. The radiologist who interprets the scans sounded pretty certain that it was not scar tissue (ie the remnants of what was cancer), which leaves sleeping cancer? 

If it is sleeping, was it the chemo that sent it to sleep or the radical diet change (no diary for starters and many powerful juices and absolutely no meat or sugar - enough to send many things to sleep alone). Have the supplements, yoga and general calm zen like state I attempt to live in sent it to sleep? Now of course I am on hormones and I have had the first batch of the dendritic cell vaccine. So really I do not know what is going on now. I think about it a lot. Can I feel my liver or can’t I? If I can is that a good thing (cell death causing inflammation and general discomfort) or a bad thing (cancer waking up and slowing growing, liver inflaming again)? Dr Martin, from the German Clinic, told me that I may feel some discomfort after the vaccine exactly because when cancer cells die it causes inflammation. So then when my liver is uncomfortable I wonder if it is the right sort of uncomfortable and maybe I have just pulled a muscle or am simply imagining the whole thing. 

So the PET/CT scan is going to tell me something, but it was taken only a few days after the vaccine so I am not sure it will say very much about the impact of that yet. It will helpfully provide a good baseline for this also, at the very least. I will find out the results on 7th. I honestly feel well, tired sometimes and not quite as fighting fit as the normal me, but I hope this is simply the effect of the 16 weeks of chemo rather than any cancer related side effect. 

I am preparing myself for what it might say. Given that I have only a lay persons understanding of what a PET scan can do - my expectation is that it will essentially have lit up any active cancer and so when compared with the CT scan, which shows mass, it will be able to show how much of the cancer is active vs sleeping. It was a whole body scan so I presume it will also confirm or not whether there are any other cheeky bits of cancer lurking in another part of my body. For the majority of people with advanced breast cancer it comes back first in their bones or lungs, only about 10% get it in their liver first as usually this is somewhere it progresses to. I am not sure if getting it in the liver first and only in the liver is something to be relatively pleased with or totally the opposite. The optimists view would be that I have one difficult front to fight on rather than 2 or 3. The liver just sounds so necessary to living. I have had some very helpful advice from people about all sorts of interesting surgical and other interventions aimed at removing tumors from the liver, unfortunately mine is what is described as ‘dispersed’ which means no big tumor but lots and lots of tiny/little ones. Again the optimist would think that surely this would represent a less formidable opponent. Lots of annoying little tumors, alone and exposed on the battle field. They seem to have been pretty effective at holding their ground to date, but I see this as a longer term war. I imagined lots of gurgling and screeching as I lay there having hyperthermia before the dendritic cell vaccine (despite my intention to love my cancer and treat it as rogue cells, like an out of control teenager). We will see what is really going on soon. 

The PET/CT scan involved semi isolation for much of the day due to the radio active material they injected into me to light up the cancer cells. The whole process took just over 2 hours. The first hour, after form filling, involved being injected with the special material, in a room isolated from others. The person who injected me came into the room in a special white coat with the vial protected in a steel casing and then that sat in another special casing. Once injected I was left for an hour for the material to be absorbed around my body. I was not allowed to read or text etc, as apparently as this means using your eye muscles which can confuse the scan pictures of the brain (or something like that). So I lay there for an hour and switched on one of my meditation downloads. These seem to send me to sleep in about 3 seconds flat so I never really do meditation I just snooze. After an hour I was taken to the scan room, another polo shaped machine, like the CT scan machine but longer. I had to lie super still for about 40 minutes as they moved me slowly through the polo shaped tunnel. I think they were taking thousands of cross-sectional pictures so that they can construct a 3D image. It is more difficult to fall asleep during this sort of scan. Just because the CT scan could only see the cancer in the liver, what if this one finds it somewhere else? What if it is in my brain? Maybe that explains my cotton wool memory at the moment? 

I do not think about this much, but at that moment it is difficult not to consider this as one of a number of potential results. For the rest of the day I had to stay away from young children and avoid touching anyone. My friend Kathy drove me to the appointment and to protect her from my rays I had to sit in the back of the car on the way home, so she really did look like a taxi driver. Then I could not touch or hug the kids until the end of the day and I had to wee frequently, so that the radioactive material did not stay pooling in my bladder for too long. I am told that despite all these precautions (for everyone else) the scan is no where near as detrimental to my health as chemotherapy ‘for example’. Great. 

I am now in France for a weeks break with my husband. My last 3 day mini break was a break for me but not for him as he was working. This is a little holiday just for us. I am not sure we have had a holiday alone together, bar a few weekends here or there, since Ella was 6 months old. It is beautifully hot, the crickets chirp at night and the birds in the day and I am surrrounded by the gentle buzzing of honey bees and flies. I have been massacred by mosquitos, mainly at night when they dive bomb every piece of exposed flesh. I have bites on my hands and fingers, toes and ankles and all over my head, neck face and ears. I bought some very expensive, no nasty chemical, mosquito repellent. This makes me smell of eau de citronella or eucalyptus, I can’t tell which and no matter how much I plaster over me, seems to be no deterrent at all. My hair is coming through and I have a soft sheen across my head. It is still not quite ready for an outing in public but it is getting there. This date, I fear, has been delayed as with all the pock marks and red spots from the mossy bites I look rather like an escaped convict. 

I have slept, gardened, watched Harry Potter (love Harry Potter), read, progressed with my knitting (very slowly) and done a good bit of colouring in. Since having the kids these sorts of holidays have simply not happened. Not that I would exchange having the kids of course but holidays since having them are less holiday for parents. This holiday feels rather luxurious as we can do whatever we want, whenever we want. Which has actually meant doing nothing very much. 

Rupert and I met when I was just 23 and he was nearly 31. We met, of all the strange places, at the Earls Court Boat Show on 15th January 1994. I was working as a volunteer for a friend who was about to undertake a circumnavigation of the globe, pedal powered. Rupert was a friend of his girlfriend and he had come to show support. Rupert’s brother, who designed Ridgeback Bikes, had donated the bicycles (for the land) and the gear for the pedal powered boat for the ocean sections of the route. I had spent the day showing people around the specially made boat, and I encouraged people to sponsor the team and in return they could get their name painted onto the hull of the boat. As it worked out Rupert and my names were added to the hull, and painted right next to each other. 

We were engaged only a few weeks later. I had won a scholarship to go to Harvard and so we set the date for our wedding the September I got back. We were married almost 20 years ago, on 2nd September 1995 and Ella came along rather unexpectedly soon after that, a respectable 10 months (July 1996). All in all Rupert and I had a bit of a whirlwind romance, we lived apart for the year before we married as I was in Boston and he was in London and then Ella came along shortly followed by Tom, William and then Ned. Ella was 6 when Ned was born and those early years were definitely pretty hairy and sleep deprived even if they were filled with love and joy. It took me a while to accept that a holiday would never feel quite like a holiday again, until more recently as the kids have got older and themselves enjoy a lie in. They can help clear the table, make their beds, run around the supermarket in search of items of shopping, and generally feed and amuse themselves allowing us time to attempt to read a book or have a snooze under a tree. 

This little holiday has the memory of time before children. The children are well looked after in Brighton, with friends helping out and Ella home from her trip to Thailand - the tail end of what would have been her long gap year adventure had she not come home to look after me. The big elephant in the room, of course, is that it feels both normal, as if I have returned to some time in my life that was long gone, but not normal at all. 

My strategy is to not think far beyond the now, but little thoughts creep in. How many times might I do this again? We have loved it so much we discuss repeating it this time next year. I know that always marching forward, and having concrete goals is good to aim for but trying to live life only in the now and not plan for the future is so alien to me. Think of the number of times a day in normal life you might say ‘One day we should think about doing x y or z’; ‘next year it would be good to…’. 

Most of me fiercely believes that I can both heal myself supported by the right treatments and manage the cancer for a very long time. But then I wonder if perhaps I am deluded. Feeling so well, with no pain or obvious signs of cancer, feeling the sun on my face, listening to the birds, it is just surreal to think that it might end. I have always had an image of me as an old lady.  I simply can’t believe that I won’t be an old lady. In my old version of my future I would outlive Rupert, who is already nearly 8 years older than me and a man, so technically I had expected a good few years as a widow. I would be living with or near my best friend, and we would meet daily to eat scones and cream and drink cups of tea.

We would bicker frequently and out do each other with stories of the prowess of our various children and grandchildren. I would follow a few mindless soap operas and read lots of books and I would most definitely knit. Of course by then I would be an expert knitter and my grandchildren would be festooned by many remarkable items knitted by Granny until they became old enough to reject them. I would meet my sisters for lunch frequently and possibly stay with them occasionally but our sibling antics would continue. I would go on long weekends to stay with my other best friends around the country and further afield (Spain and New Zealand). I would teach my grandchildren tactics for life, including how to play a good board game. My father once described our household (that is mine as a child) as one which was often difficult to manage as it was filled with so many Generals. All of us powerful characters and fiercely competitive. Even now in my own household the children know that if we sit down to play a family game, the intention is to win..... But crying if you lose is absolutely forbidden. And then, as I learnt from my own father, one day the children suddenly become more adept and able than the parent and the tables are reversed and it is they who finally get a chance to whip us parents at last.

Who knows, maybe I will manage this beast, maybe dendritic cell will result in a complete response, maybe I will move from treatment to treatment eking out every month and year possible, maybe there will be a magnificent break through. Thinking back 10 years, our knowledge of cancer has taken leaps forward, the treatments are slow in coming, but with a bit of pressure and focus might this change?  You may have read the many reports that came out of the recent annual conference where scientists report their findings on potential cancer treatments. The big take away message was that immunotherapy offered a paradigm shift in how we manage cancer. Dendritic cell therapy is an immunotherapy, based on the potential of harnessing the power of your own immune system to fight cancer. The findings reported were mainly for melanoma - but the principle remains for cancers generally. Let’s see how long this takes to trickle through to treatments for the wider population and other cancers. Imagine that - were it to be proved that all along the answer was partly already within us, it just needs a little help but relies on a strong immune system - consider how this contrasts with the decades of treatment that has and still does rely on a treatment that actively destroys your immune system. 

Fundraising update - £64,000 and rising! Treatment for now and treatment options for the future

I have just lost the blog I wrote which gave an update on the fundraising aaaaaaaah. So this is going to be a shortened version of it. We have now passed £64,000! This is beyond our original target, which is absolutely amazing. I have been able to go to Germany and have the first of the five sessions which make up the dendritic cell therapy I am having thanks to the generosity of everyone who has given and fundraised. (see the last 2 blog posts)

When I first realised that I could not sit and passively work my way through the list of treatments currently on offer for people with advanced cancer in the UK I started the research which led me to where I am today. What became clear was that for advanced cancer patients there are options available, alternative therapies, cutting edge approaches, trials (which you must pay to join) and drugs still unavailable in the UK - all of which require money and not insignificant amounts of it. I could not sit and wait. I needed to start fundraising, not only to access the treatment in Germany, but to be prepared for any relapse. And so in early April ‘Cancer is Pants’ was born, around our kitchen table with Ella, my best friend Sophie and our friend and expert campaigner Ellie. 

We decided on an initial target of £50,000 as this is what I needed for the treatment in Germany. We thought that although it was an ambitious target, it might just be possible….. And we made it!

Hitting the £50K mark and exceeding it has taken us beyond the next 4 months into thinking about next year. It has opened doors of possibility and allows us to think about the choices available to me when and if I have a relapse. Assuming that if this should happen we would not have time to fund raise the plan is to continue fundraising beyond the cost of the current treatment. Having funds gives me the option to access whatever is the best treatment available. Amazing!!!  Thank you!

We could not have imagined the response we would get when we launched the campaign in April. Donations have come in from family, friends, friends of friends, neighbours, work colleagues (and mothers of work colleagues), and so very many strangers. The community just pulled up their up shirt sleeves and came together in an overwhelming show of love and support - practically but also engaging in all sorts of fundraising activities. Cancer is Pants has raised funds through sponsored walks in the Surrey Hills (Kasia and the Donaldsons), sponsored cycle rides (Arthur, Jon, Rueben), cake sales (including Eliana and Mia), staff pants on heads days (Blueberry Nursery), a garden party with auction and portrait sales (Jo, Andy, Harriet and Toby, Jason for portraits and Rory for generous gifts for auction), a mammoth bike ride from Chester to Brighton (the Kemps), local shops and cafes holding special events (The Lavender Rooms, Filfil Cafe and the Newsagent and the Dials), the local schools (BHASVIC, Cardinal Newman, Stanford Infant and Juniors) donating space for the Zumbathon or holding cakes sales and competing for pants on heads photos, a sponsored walk in Norfolk (the Mermagens), a 13K sponsored run (Annie), a sponsored Three Peaks Challenge (Chris), a fundraising football tournament (Hove Park Colts U12, Hove Riverdale U12 and Seagulls U12), a Pilates Bonanza (Cecilia), incredibly generous donations from the 2 funds ‘Hold Amy’s Hand’ and ‘GavAID’ and  from youtubers TobiJizzle and the Sidemen, and a Cancer is Pants Yoga event which was held today (Ellie with Hannah, Hannah and Jess). 

There is one more big fundraiser on the horizon, a massive Zumbathon- 2.30-5.30pm on 4th July at BHASVIC (SATURDAY!!!!) - thanks to Ellie and Federico Bedoya. We would love people to come along and make this event a huge party and celebration of what we have achieved so far so PLEASE do join us and spread the word this week to your friends and family! There will be prizes (including family Go Ape ticket, Co-op vouchers and Body Shop gift basket) for the most dedicated!! You can book online or turn up and pay on the day. If you can’t manage dancing for 3 hours solid you can sit and watch eating some delicious home made cakes- just bring pants, smiles, energy and let’s make a great atmosphere!

https://www.facebook.com/events/1598496623768362/

I am not sure how to thank the many, many people who have donated and raised funds and shown my family and I such love and support. We have decided to hold a thank you tea party. We have booked Exeter Street Hall on Sunday 19th July for a Golden Pants Award tea party between 3.30 and 5.30pm. The Howes family would love to see as many of you there as possible. We will provide tea and some cake but please feel free to bring more. We have some Golden Pants Award certificates to give out and would like a chance to thank you in person. Please come!!

Science not magic…Dendritic Cell Therapy

June 18th 2015

I am now home! I had the vaccine on 16th June. As Dr Martin gave it to me I said ‘Please let it work it’s magic’.  ‘It is not magic’ replied Dr Martin, ‘it is science!’.  They injected 6.3 million dendritic cells into me. Apparently anything above 1 million is OK, but Dr Martin is quite understated so I cannot work out if 6.3 million is good or just OK.

He gave me a dose of interferon with the injection; I think to stimulate my immune system. I was warned I should like to get flu like symptoms a few hours after the vaccine which would last for a few hours. And sure enough about 3 hours afterwards I lay in bed shivering and aching and with a good high temperature. It lasted almost 8 hours – but I was happy as this is what they want to happen. I felt rather black and blue the following day, on which we caught the flight home after my last session of hyperthermia. I will return in July, early September, October and November. Meanwhile I wait and hope they are doing their job.

June 14th 2015

It is Sunday today. I have a day off, that means no treatment. It is a beautiful day so I have spent this morning in the Botanical Garden and at a near by café (drinking green tea of course). Gottingen is a really lovely town. The people are polite and kind and there is so much life. It has a population of about 125,000, a quarter of which are students. 

Kate left on Thursday morning and Teresa arrived that night, she then left this morning and I will soon be joined by Sophie. Spending time with these amazing friends has been a treat. There is definitely general juicing rivalry going on. Ella was the one to beat, not only for size of the juice but for how unpalatable it was. She has had more practice granted, so the playing field has not been even. Kate made a valiant effort, and was particularly harsh over the last dregs which she made me finish almost to the last squelchy, foamy, yucky deposit that collects at the bottom. But I think Teresa wins. I actually threw up a few minutes after her first attempt. It was possibly a case of too much beetroot, but the effect was spectacular. Her confidence was shaken but she persevered.

Since I last wrote I have continued with daily hyperthermia. Then on Friday I had the first dose of the Newcastle Disease Virus. This is given as an infusion (ie mixed with saline and fed through a line in my arm). It is used to help support the dendritic cell therapy. The history of it is fascinating. I am going to copy some of the clinic’s summary about this this virus that was included in the consent form I signed before they administered it.  There is some clunky English by whoever translated it from German. Here is a photo of the vial the virus that went into me came in. 

Tumor Therapy with oncolytic virus Newcastle Disease Virus (NDV)

With regard to the up to know unfavourable results of conventional therapy in the treatment of especially advanced tumours novel therapeutic methods have to be developed. …a promising approach is the treatment with replication selective viruses, also called oncolytic viruses. This approach is also known as virotherapy. The approach to virotherapy in our group is based on the Newcastle Disease Virus (NDV), one of the most promising candidates among the group of oncolytic viruses….NDV is not a pathogen for humans and is harmless causing only mild flu like symptoms or conjunctivitis in the worst cases. NDV replicates efficiently in humans in tumour cells, only leading to the complete destruction of the infected tumor cells within a short time. In clinical studies with NDV carried out so far, significant tumor remissions as well as prolonged survival periods have been observed with a very low rate of observed side effects. …The oncolytic potential of NDV is highly increased by the additional application of local hyperthermia before the administration of NDV, and by vaccination with Dendritic cells afterwards.

I will be given this again on Monday, with more hyperthermia and a drug called Zometa  which is used for osteoporosis and for people with breast cancer in their bones (maybe for all cancers) – but I think it works to harden the bones but has an effect on white cell production and is used to prime the immune system.

I feel very safe here and confident that this therapy is based on good science. Indeed I have been talking with Dr Martin to understand more about the history of the therapies and why they are not more widely recognised  given that results are at least as good as conventional therapies and do not destroy the immune system like chemotherapy does. I will continue to investigate this, as from what I have learned this is a story that needs to be told.

The Scientist Ralph Steinman, received a Noble Prize in 2011 for the Physiology of Medicine for the ‘discovery of the dendritic cell and its role in adaptive immunity’. Not one scientist has received the Nobel prize for chemotherapy.  ‘In 1973, Steinman and Cohn discovered dendritic cells, a previously unknown class of immune cells that constantly formed and retracted their processes. This discovery changed the field of immunology.’  www.nobelprize.org

This is what I have so far pieced together, but do not fear I will find out more. For the first two decades of his research the potential of dendritic cells was not appreciated but by the mid 1990s they attracted growing attention from the scientific community. Ralph Steinman,  was himself diagnosed with Pancreatic Cancer in 2007 and more or less told to go home and that he had probably only a couple of months. He believed that dendritic cells had the potential to fight his tumour so he administered dendritic cell therapy to himself. He survived almost 5 years, which was unheard of for pancreatic cancer (and is pretty rare today). He died 3 days before the prize was announced and I think is the only person ever to have been awarded a noble prize posthumously.  You can read the Nobel Prize Lecture given on behalf of Steinman here: http://www.nobelprize.org/nobel_prizes/medicine/laureates/2011/steinman-lecture.html

The University of Gottingen is one of the best know Universities in the world for science.  A team here undertook a study in the 1990s, comparing outcomes from the treatment of renal cancer (which like pancreatic cancer has limited treatment options) between dendritic cell therapy and the chemotherapy gemcitabine.  The results were impressive with survivorship among those receiving dendritic cell therapy being significantly longer than the other group. The University were naturally very excited about this ground breaking research and published (among other publications) a one off glossy report celebrating and sharing these results.

 From here I am still piecing things together but I understand that these findings attracted research funding from Denmark to the tune of 5 million Deutchmarks but things went wrong when a researcher doing his post doctoral thesis was found to have faked some data in this subsequent study. The reputational impact of this on the University was severe and they were quick to respond, closing down the research which effectively bought the investment in the study of dendritic cell to a close.

Over this period Dr Nesselhaut and Dr Martin took their work to their own private practices in and near Gottingen (Duderstadt) where they set up their own laboratory and continued to focus on this therapy, and after much scrutiny from the relevant health authorities are able to offer this. Mainly it is available only to patients able to pay for it, but there is at least one insurance company (Max Plank) for patients in Germany which will pay for it (presumably because they have looked into the results and are actually interested in outcomes).

Not long ago the University showed renewed interest in partnering with Dr Nesselhaut and Dr Martin to continue research in this field but they could not reach an agreement and the University is no longer pursuing this. 

So this helps explains why these two clinics are located where they are offering this therapy. Why there has been no further major interest in this line of treatment I simply cannot understand. It can only be a commercial decision. The original findings from the study on renal cancer hold. The Nobel Prize winner was certainly not a charlatan. Is this really a case, as many I am coming across, of certain therapies simply not offering sufficiently high financial rewards to be worth the investment in further research necessary for them to become accepted or offered as part of normal practice. Certainly, as I mentioned in the earlier blog, the approach is highly personalised, time consuming and does not produce a vaccine which can be mass produced.

In the meantime there are some uncomfortable truths about existing treatments. I am collecting papers, unfortunately in German and so I will need some help with translation, but one of them is written specifically for German Health Professionals, and is traditionally a very conservative publication. Published in 2005 authors undertook a retrospective analysis of studies which examined outcomes for patients with mestatic breast cancer (aerzteblatt.de) and they concluded that length of survival had not changed in 20 years (Metastasiertes Mammakarzinom: Keine Lebesverlangerung siet 20 Jars). With the introduction of a growing number of more targeted therapies (eg hormonal) since this paper was written this is likely to changed and I  will  investigate and update. (source www.aerzteblatt.de/archiv/48590). The main treatments offered over the period of this review were surgery, chemotherapy and radiotherapy.

Another often quoted paper (The Contribution of Cytotoxic Chemotherapy to 5-year Survival in Adult Malignancies – Clinical Oncology (2004) 16: 549-560) reports findings from a study which examined more than 300,000 patients with different cancers across USA and Australia who all received chemotherapy. The authors wanted to determine what the 5-year survival benefit that could be attributed soley to cytotoxic chemotherapy in adult malignancies. They estimated that the overall contribution of curative and adjuvant cytotoxic chemotherapy (chemotherapy alongside another treatment) to 5-year survival in adults was 2.3% in Australia and 2.1% in USA.

For mestastatic breast cancer specifically they write the following:

In breast cancer, the optimal regimen(s) for cytotoxic chemotherapy in recurrent/mestatic disease are still not define, despite over 30 years of ‘research’ and a plethora of randomised controlled trials (RCTs)  since the original Cooper regimen was published in 1969. There is also no convincing evidence that using regimens with newer and more expensive drugs are any more beneficial than the regimens used in the 1070s.

In addition two systematic reviews of chemotherapy in recurrent or metastatic breast cancer have not been able to show any survival benefit. The absence of quality of life data in many RCTs of cytotoxic chemotherpay has also been noted.

Although guidelines may exist for some uses of palliative cytotoxic chemotherapy, clinicians are not restricted from giving second, third or fourth line palliative chemotherapy in the face of progressive disease and minimal response rates.

As I read this oncologists can basically prescribe chemotherapies as a second and third plus, lines of treatment, even though there is no evidence of response rates worth writing home about. Despite this, therapies like dendritic cell, which have a stronger evidence base than the use of these chemotherapies as second plus line therapies, are not being seriously considered, dare I say it ignored. The science behind DC therapy is good. Their results are impressive compared with many existing treatments. I am still at a loss to understand why there has not been more interest in this.

 Over the last 10 years the science of cancer really has broken open and there is exciting research on a number of fronts, including immunotherapy eg. gene therapy, stem cells. But there is a bottle neck between this research and what is getting through to patients in the form of new treatments. As we understand more about cancer the more complicated the research on treatments becomes.  Clearly every person’s cancer is unique. Personalised treatments would therefore appear a sensible way forward. The treatment I am having is the ultimate personal treatment in that it uses my own immune system. There are no mass market products to be made out of this therapy. Hence no interest from the pharmaceutical industry?

I do understand that pharmaceuticals need to make commercial decisions and that a vaccine that works for a large number of people may be a better longer term solution but what happens to those treatments which do not cut the commercial mustard?  They may work, but what returns would any investment make? Would not Cancer Research and the like not be the groups, with theoretically no commercial interest and patient outcomes their priority, be the type of group to take up the mantle for these types of therapies? From what I have seen on their website they are very conservative with a small ‘c’ and cautious. For those of us with advanced cancer, hell, we are prepared to take a few risks and we need a system that will enable those opportunities. We need to be treated  like adults, able to make decisions about risks of the unknown vs taking no risks at all and dying anyway or having chemotherapy again and again and, oh!, also dying anyway.

 I have often seen statements such as ‘there is not enough evidence to support the use of x y or z’. This does not mean x y or z are not of potential benefit and should therefore be ignored, but that the evidence, to the standard currently required, necessary to make this decision does not exist.

When the cat’s away….

There has been a delicate balancing act while I have been away and with Ella now in Thailand. Rupert was in full control last week but this coming week he is away for work so we have a patchwork of help until I get home.  I have enjoyed the space away from home to absorb some of the very big thoughts that whir around my head, or that I have pushed to one side until I have had the space to give them the time they need. Having my greatest friends, who have known me almost all my life, has helped. I am still getting to grips with the uncertainty of the future, and working around treatments, scans, injections and not knowing quite how far I can plan ahead.

In terms of treatment options, now that I am in Germany I am planning my next move.  I will be returning here at least 4 times but I have to consider what I would do in the event of a relapse. This means being very clear about what my options are so that I can move quickly in the event this happens.

I have a PET scan on 23rd June, as my oncologist needed this to complement the CT scan as a baseline for me. I will see him every 6 weeks I think. I continue to take the hormone pills, and, touch wood, feel generally not  too bad on them. I cannot quite distinguish between what is tiredness from the chemo, the current treatment or the hormones – but with no home responsibilities I am able to take it easy between treatments. I continue to meditate daily and take my many supplements and other pills/medicines. Eating vegan has been easy here, although there seems to be a habit of adding sugar to dishes. I have had lunch at the same vegan café everyday as the food is delicious and organic. For the evenings we either make something simple at the studio apartment (but the kitchen is so tiny this does not involve cooking), or we try and find a local restaurant with vegetarian dishes. Our lack of German is a problem. I am fascinated by the language and am learning bits and pieces from the menus mainly. Spargle – I think is asparagus. Kartoffen – potato. I have also worked out (rather William, my third, who learns German, had told me before I left) that nouns in written German start with capital letters. I realise this is why, when you read German, it always looks as if you are being shouted at. 

Germany! T-cells, hyperthermia and a giant suitcase...

June 9th Tuesday Gottingen, Germany

I am sitting in a tiny apartment in Gottingen with my computer precariously balanced on the sort of table you would take camping. My three best friends are accompanying me (not all at the same time) so that I am not alone. Kate has the first stint with me and this involved flying from Heathrow to Hamburg. The whole experience has exposed my hopeless geography of Germany. Between Kate and I we have possibly 15 German words, and these include the numbers one to ten, giving us about 5 useful words (if you count wasser (water), mit (with), bitte and danke – and auf wiedersehen.  ‘Which is the platform to Gottingen?’ does not feature nor does, ‘Excuse me but according to the timetable the train to Gottingen leaves platform 14 at 18.01 but we are confused as it is 17.57 and there are two trains on this platform, both going in opposite directions, one leaving at 17.58 and the other at 18.06. Where is our train?’  Luckily we are British and therefore used to last minute, unannounced changes to platforms and we worked out, with possibly a minute to spare, that our train was pulling in on the opposite platform.

I travelled with an enormous suitcase, not many clothes but lots of supplements, food, almond milk, juicer, fresh ginger, green tea. Before leaving I had been a bit worried about the state of my wig, which was becoming increasingly dishevelled. When I bought it I was advised that I could spend even more money and buy proper wig hair products, or I could use normal shampoo and finish off with fabric conditioner. As the wig was quite expensive I decided I would go for the latter. I think this may explain the state of the wig. You have to wash it at night and leave it to air dry. Then in the morning it looks scarily like a cat which has electrocuted itself and your heart skips a beat. Will it ever look the same? With some careful attention with a hair brush it would generally begin to look better, but what I could not disguise was the very strong lenor fabric conditioner smell. So, before Germany I decided I had to find a solution as there is one thing wandering around close to home in a wig which does not behave, there is another thing getting on a plane, train and then wandering around a strange city in another country with dodgy wig. I therefore went back to the wig shop and bought myself wig ‘products’. Shampoo, conditioner and a special wig hair spray. The brand (or product?) is aptly named ‘cyber hair’. They work much better. But they also weigh a bit and have all come with me. I am not really sure what else made my bags so heavy but luckily Kate was with me as I would never have navigated the route or managed to heave the cases alone.

The train went from Hamburg (which I now know is in the North of Germany) to Munchen (Munich). Gottingen is about 2 hours by train from Hamburg and passes through Hannover (which I now realise I should have flown to as it is closer to Gottingen than Hamburg). The train itself has a mixture of open carriages and closed ones, like trains a few years ago in the UK – a la Hogwarts Express. We squeezed into one of these and blocked the tiny corridor in it with my massive suitcase. It was a very crowded train but everyone was good humoured despite us blocking much of the compartment.

At Gottingen Station we took a taxi to Residenz Reich, a very compact apartment which I have rented for the time I am here. The city of Gottingen is very beautiful, many half timber houses, well known for its university (which has produced 44 Nobel Prize winners). The apartment block we are in is probably the ugliest building  in the city. The apartment itself is more like the inside of a motor home, possibly smaller, so we have to be very organised. It is perfectly comfortable, the shower works well. The internet is impossibly slow and the kitchen would be a challenge were you to be too ambitious.

We arrived there at about 8.30 pm on Sunday. My first appointment at the clinic was the next morning just before 9am. The practice is owned by a Dr Martin. Praxis Dr Martin. He works in partnership with a Dr Nesselhaut who, from my research, is better known. Dr Nesselhaut’s clinic is about 25 minutes away by car in a smaller town called Duderstadt.  They use the same techniques and the same laboratory and for one part of the process, the extraction of the white cells, I went to Dr Nesselhauts clinic as this is where the special machine for this is.

What is amazing here is that every single building down the street where Dr Martins practice is seems to be full of independent practices of other Doctors, all specialising in different things. I do not understand the German health care system, but it appears to me that with this model they have greater autonomy in how they treat their patients and organise their care – but I do not know enough about it yet. Dr Martin was reassuringly Doctor like – I am not sure what I expected – but I think perhaps I had a deep nervousness that he may be some crackpot. He was professional, credible and clearly knows his stuff. We discussed my treatment and I was given a number of consent forms to complete. These included a list of possible side effects. Which, as with any other such list I have ever come across, includes some very unpleasant, if rare, possibilities. Saying that, the list of possible side effects from my hormone pill (letrozole) is as long as my arm. I had the opportunity to ask him directly about the treatment and also work out my schedule for the week. I will have hyperthermia to the liver every day and my first treatment was that morning.

 I asked him why he was able to administer dendtritic cell therapy and why we could not in the UK. I have still not got to the bottom of what prevents us doing this in the UK, but don’t worry I will. What he did say is that it has clearly taken them many years to be registered to do this and this has, and still does involve, very close scrutiny by the health authorities whose primary concern is safety of the patient.

I also wanted to know why, in his opinion, this was not a therapy being pursued more aggressively elsewhere. I am sure the full response is more complicated, but what he said makes sense and I think helps explain why many promising therapies do not get the investment or attention they deserve where big money is required and returns are unspectacular. This treatment essentially involves the creation of a personal vaccine. Personal to me. Using my white cells. It is time consuming and labour intensive and the vaccine created is only going to be good for me. So there is little/no possibility that this approach will open the way to a vaccine which can be used for the mass market. Clearly when balancing competing demands Pharmaceuticals need to consider the level of investment with potential returns and this approach is simply not commercially viable. I would like to be able to understand if the lack of interest in this approach is in fact based on good evidence that it is not of any benefit, or no more benefit than conventional therapies.  The fact that it does not have the poisonous side effects and that the limited evidence I have seen on results indicates it is at least as effective as the worst performing chemotherapy,  makes me wonder whether our obsession with chemotherapy is related more to the generalizability of this approach (ie it can be delivered to large numbers of people) and the fact that it is based on years of research (making it already old news in the new landscape of cancer therapies). We know that everyone is different and everyone’s cancer has unique characteristics, therefore the future really demands a growth in cancer treatments which are able to take advantage of that personalised information. This is happening, but slowly. So my plan is to stay alive as long as possible while the science progresses and ideally turns into treatments available to people like me. The barriers to this happening at speed are significant so it will take people like me to work out how to break these barriers down and make a bit of noise to encourage this. I just need to understand them better.

More about Hyperthermia Treatment ….

Hyperthermia (also called thermal therapy or thermotherapy) is a type of cancer treatment in which body tissue is exposed to high temperatures (up to 45C/113F). Research has shown that high temperatures can damage and kill cancer cells, usually with minimal injury to normal tissues. By killing cancer cells and damaging proteins and structures within cells, hyperthermia may shrink tumors.

My understanding from talking to Dr Martin, is that the Dendritic Cell Vaccine will train some of my immune system Generals who will then train a large number of T cells – ie their foot soldiers. BUT, there is a limit to how successful even this number of T Cell (foot soldiers) can be against circulating cancer cells, if this load is very high. If there is a solid tumour somewhere also, this makes their job even harder. The plan with hyperthermia treatment is that it constitutes a direct attack on the dispersed tumors within my liver, to weaken them, even destroy them, and so give the Dendritic Cell Therapy a better chance of success/a helping hand, by knocking out the western flank.

The process (as you can see in the photo) involves me lying on a bed which has a globe like ball under my back and a moveable arm which is brought down so that essentially my liver is sandwiched between the two.  So far it has not been uncomfortable at all, in fact I feel little if nothing. The temperature has been going up daily and I have so far had 3 sessions, and had slight pulling/discomfort during today’s session. The main thing that has bothered me is that being sandwiched between these balls makes it more difficult to take a deep breath. They give me oxygen through the nose during the process, but on the first and also second day I had a mini panic attack. Nothing too dramatic but I kept imagining I could not breath, and the more I tried to compensate by trying to take a deep breath only to find I could not, the worse it got. Kate just calmed me down, rubbed my hands and feet and reassured me I could in fact breath. This morning, even before leaving the apartment I started having trouble breathing, simply the thought of going back triggered it. But the session today was better, I listened to a meditation download, Kate distracted me and the time actually raced by. I have 6 more of these to go.

The next major procedure, necessary to make the Dendritic Vaccine, involved extracting my white blood cells. The process is called Leukapheresis. I had spoken to a great woman who contacted me though cancer in pants, who is being treated by Dr Nesseulhaut and we spoke before I left the UK. She was really helpful and talked through what to expect, so I knew what was likely to happen. We took a taxi to Dr Nesselhaut’s clinic. The town Durdestadt is beautiful.  The process involved sitting in a chair with tubes in both arms. One to remove my blood which then went through a centrifugal machine, which separated out the white cells. ‘The individual components of blood are of different size and weight which allows for their almost complete separation’.  The second one was for the blood, minus the white cells to be pumped back into my body. It took 2.5 hours in total. It can make people tired and shivery. I did not feel too bad, tired but not hopelessly. We went straight home and I lay down to rest.

 It is now Wednesday and I had hyperthermia this morning. Kate has taken over Ella’s role and makes me formidable juices and stands over me to make sure I consume them all. She is more lenient on the yucky lumpy bits that sink to the bottom than my daughter is. She leaves tomorrow and passes the baton to Teresa.

We have found a perfect little café which serves vegetarian and vegan organic food, along the road from which there is an organic supermarket. So my juicing regime continues with nice clean vegetables and I can buy most of what I bought with me in my suitcase. Note to self. Germany is quite ahead of the game when it comes to catering for alternative diets and clean living.

Before I end this blog I have to mention my first ever trip to the races (horse racing at Brighton racecourse) and my mini break in Portugal. One of my lovely cousins (I have many), Charlie, took me out for a day at the races. He booked the Silk Restaurant, which technically gives you a great view over the race course and had spoken to the marketing team and arranged for me to choose the best dressed horse before one of the 6 races running that day. I have no experience of horses, except that Ned goes riding sometimes, but I can tell a good plait when I see one (not that I was ever any good at them). So I managed this honour. In terms of making any money – the small bets I made were all hopeless and I made absolutely nothing. Charlie, who’s plan was to donate any profit from the day to cancer is pants, had mixed success and cancer is pants did received a donation of £125 (I suspect this was not all profit having been with him during the races!)

A brilliant, if risky, way to raise money for a worthy cause. The day was perfect as I have not spent time with Charlie for far too long. I was very spoilt. The slight problem with it was the lack of visibility. This was so bad it was literally impossible to see the horses, even on the big screen, unless they were running right past us. The commentator had a particularly hard time ‘As you can see there is nothing much to see. You can hear the horses thundering along the track and at this point, with a bit of imagination, you could all be winners!!'

In terms of Portugal, while Rupert was working during the day and some of the evening, I did nothing and had such a lovely time. The weather was perfect and I just lay and breathed in the sea air, looked at the sky and did not think very much about anything. I managed to swim. There was an indoor pool and a sauna room. As the weather was so lovely no one was inside so for me it was perfect. With skin sensitive to the sun because of chemo, and no hair, I had perfect privacy. I also used the sauna twice and oozed out some of those chemo toxins.  I allowed myself fish and with my appetite returning I actually found my mouth watering before food a couple of times, something I really have not experienced for a very long time.  I managed an Agatha Christie look with my swim hat and big sun glasses, covering my lack of eyebrows, when I was outside by the pool, and for walking along the sea front I tied a ribbon tightly around my wig. A tincey bit sweaty with the sun high in the sky, but perfectly bearable.  We also spent some special time with my brother and sister in law who have just moved to Portugal.

The day before I left for Portugal I had a blood test in preparation for Germany, and my white cell count, which needed to be 4 for the treatment here, was still only at 3.5. It had simply not risen in 3 weeks. I had a test here on Monday, 6 days after that test and after this mini break, and it had risen to 4.6. My haemoglobin had also risen. So – I think I basically need lots more mini breaks!!

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

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.

Packing my supplements

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.

The not-so-compact Juicer!

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.

Scan three...results

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....

Emotional Roots and Spontaneous Healing May 25th

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).

CT Scanner - not the one I used

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.

Healing properties

 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. 

The strange story of my left breast

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.

Making Mummy laugh!

 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.

My First WIG

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.

What is the best way to go?

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.

An Ordinary Day

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

A thank you ROAR for your generosity and love!

Every Boy Loves His Mum – The Tobjizzle phenomenon

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

Radical Remissions, Art, IP6 Gold and Dead Chickens

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.    

www.cancerispants.co.uk GOES LIVE…….

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. 

Fasting before chemo…am I mad? April 10th

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/