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.