TWO YEARS ON

It's two years today since I was given my cancer diagnosis. In some ways it seems much longer, in other ways it's gone by very fast. I certainly never expected to be writing a blog two years on...

I knew from the beginning that secondary cancer is deemed incurable, but I never wanted anyone to give me a prognosis, afraid that it might somehow "programme" me to die at the expected time. When I researched cancer of unknown primary (CUP) I was careful not to let myself read any statistics on life expectancy (which sometimes meant closing web pages in a hurry!), but I couldn't fail to realise that the prognosis is generally very poor. It's only now, two years further on, that I've felt safe enough to finish my research and actually confront the statistics. I know that some of you have read up on the nitty-gritty of CUP, and others haven't wanted to know too much, but if you're interested here are some facts and figures: if you'd rather not read them, look away now!

CUP makes up only 2-4% of all cancer diagnoses each year, but is the fourth most common cause of cancer mortality. The reason is that, by definition, it's found when cancer has already metastasised (spread to other organs), most commonly the liver, lungs, bones and / or lymphatic system, so usually surgery isn't an option and treatment can only be palliative (controlling the symptoms for as long as possible). The reason the original site can't be found varies, but is likely to be because the primary tumour: is too small to show up on scans (i.e. is less than a couple of millimetres in diameter); can't be seen because it's obscured by other organs or secondary tumours; or has disappeared due to insufficient blood supply, genetic instability, or being sloughed off (e.g. in the digestive tract). However, since it's already spread to another part of the body, the damage is already done.

Treatment of secondary cancer is the same as for primary tumours (so, for example, breast cancer which has spread to the bones will be treated with breast cancer drugs, not bone cancer drugs). Because the site of the original tumour isn't known, treatment is much more complicated for CUP, and involves piecing together pathology reports, ambiguities on scans, tumour markers in the blood which can sometimes indicate the likely location that malignant cells have come from, and, frankly, guesswork, to decide on a treatment plan. The difficulty in finding the appropriate treatment, and the relatively high average age at diagnosis  (59-66), added to the advanced state of disease at diagnosis, all contribute to a very short prognosis. Life expectancy seems not to have varied much in the past decade, with studies showing an average survival of between 2-11 months from diagnosis, and around 10-15% of patients surviving 5 years.

My doctors at the Royal Marsden initially felt that the most likely source of my cancer was the pancreas (for which life expectancy is less than a year, with only 5% surviving 5 years), and then amended that to the bile duct. Bile duct cancer is one of the rarest types, and because it's usually only discovered when there are serious symptoms, life expectancy isn't much better: 2 years for those who are operable, and 2-10 months for those who aren't, with 5% surviving at 5 years.

So my assumption that I would only last a few months wasn't completely unfounded - it was odd how I knew it even while I didn't let myself think about it. However, alongside believing I would probably die quite quickly, I was well aware that I was significantly younger than most people diagnosed with CUP; only one organ (my liver) was involved; I had no other health problems, unlike some older people; and for any average statistics there are always outliers who do much better (as well as much worse) than expected. In some ways the unknown nature of my disease helped me to cope, by allowing me to convince myself that the grim statistics I refused to find out too much about mightn't necessarily apply to me. In particular, even if my primary tumour was / had been in the pancreas or bile duct, it clearly hadn't behaved in a typical way (growing bigger and bigger before spreading), so I took some comfort in hoping that I might continue to nonplus the medical expectations.

All the same, it feels like a huge achievement to be writing this two years on. Admittedly I get pretty weary at times from the chemo, but (touch wood) I'm relatively fit and healthy, I'm not in any pain, and my body is generally functioning satisfactorily. It seems incredible, and whether or not I can claim any credit for it, or whether it's just luck, I'm not sure. Many of you have told me how well you think I'm doing, and congratulated me on my efforts (through alternative therapies, diet, supplements and attitude): it's lovely to be congratulated and of course I want you all to be happy and pleased for me. 

However, I'm wary of me, or anyone else, assuming that just because I've done much better than expected, it means I'm out of the woods now, or that I'm somehow immune to the usual trajectory of cancer, or that if I've survived this far then I must have it in my power to fend it off indefinitely. I think at first I hung onto a hope that if I could just make it to a year, or two, or five, or whatever, I would somehow have outwitted the cancer and beaten the odds. For a while it was comforting to think that way - that it was in my control to decide I'd get the better of cancer, and that there might come a point when I could relax and not need to worry any longer - but it now makes me rather uneasy. It sets me up for feeling a failure if and when anything deteriorates: it'd be bad enough knowing that people were sad and worried about me, without the additional layer of surprise ("but she was doing so well!") which could so easily feel like a reproach ("why did you stop doing so well?"). In addition, two friends who I met at the clinic in Germany, who when I met them were like me in seeming normal and well, with lots of energy and positivity, have died in the last couple of months, and that's hit me hard - not just losing the friendships and supportive email contact, but the realisation that doing well for a period of time doesn't guarantee anything about the future. I'm slowly and painfully coming to accept that all of us have a finite amount of time here, and it's a case of how long we have, and what quality, rather than whether we can "beat the system" altogether. 

It seems as though this mindset, recognising the fragility of life, should mean that I'm extremely grateful for every day. Every cancer survivor's memoir I've read (quite a few!) follows this narrative of facing death, realising what's truly important, changing your life in some dramatic way, and thereafter appreciating every single thing and living entirely in the moment. I particularly feel it today, that I should be celebrating and humble and awed at the beauty of being alive. So I'm a bit ashamed to admit that I'm not as grateful as I feel I ought to be - I've found it very hard to change my mindset and truly be thankful for what I have, rather than continuing to get annoyed and stressed by little things, as well as railing against the big things like the limitations of being on chemo, and resenting not being able to take the future for granted as most people do (and as I used to do). It's difficult getting a balance between living a "normal" life and looking for some epiphany, and I can't pretend to have reached any comfortable position on this (especially as it's easy to worry about not being thankful enough - "I've got to reach a state of eternal gratitude or I won't ever heal!"). 

In my down times, it feels as though since being diagnosed my life has shrunk to nothing more than attending health appointments and treatments, following the right diet, taking numerous supplements, and doing all the things I believe I'm supposed to do to stay healthy for as long as possible. Even bleaker, it can sometimes feel as if that's all I have to look forward to in the future too - a life dominated by preoccupation with my health and coming to terms with the differences between now and my previous lifestyle.

But I do know it's not true that I've only been being a cancer patient - even if it sometimes feels that way - so, in the spirit of reminding myself what I have gained through staying alive since last November, and hopefully getting closer to appreciating the preciousness of still being here: 

In the past year I'm lucky enough to have gone skiing twice, which feels like a miracle; I've had lovely stays with friends in Belgium, Switzerland, Edinburgh, and other parts of the UK; I've gone to a number of exhibitions, concerts, plays, and a hilarious session of karaoke. I've played in four concerts and a chamber weekend away (continuing to be very involved in the admin and running of the orchestra, which has felt important to maintain), and played eight Beethoven symphonies in a day (tiring, but extremely satisfying). I spent a fantastic holiday in Greece on a self-development course (and did have some epiphanies there, despite my gloomy previous complaints!). I completed a distance learning Post-Graduate Certificate in Humanitarian Work, which I'd started in September 2010 and put on hold after I was diagnosed: it was a matter of pride to finish it, although it was quite a lot of work, and it felt good to do something which used my intellect. I had six 10-day stays at the German clinic, making two side trips with friends to Cologne and Heidelberg in order to broaden my view of Germany and to turn the treatments into an opportunity for something more pleasant. I've had new cupboard doors and shelves built in my flat, reorganised my filing and storage systems, and set up my spare bedroom as an office space, and continue to make plans for further improvements as soon as I have the energy.

All these I guess are significant achievements, but most important of course is having spent time with people, especially my immediate and extended family, and in particular watching my nieces and nephews grow and develop: I've really enjoyed taking some or all of them ice-skating, horse-riding, to Legoland, films and the theatre over this past year, as well as seeing them all very regularly. Particularly as I don't have children of my own, it means an enormous amount to me to be involved in their lives, and to have the chance to build relationships with them which they'll remember positively - an extra year of memories makes a huge difference. Spending time with friends has similarly been incredibly nourishing, enjoyable, and supportive (including catching up with some friends who I hadn't seen for years), and I've been amazed at how committed to me many people are. 

So although I can't always connect to it, I know I do have a great deal to be thankful for. I've found it surprisingly moving to document what this last year has given me, and I feel far more appreciative of my life now than when I started writing, which is a much more comfortable place to be. I know that none of know what the future holds for us, regardless of what we plan or imagine, and I realise that, even when I feel a bit alienated from "normal" people doing ordinary things, in many ways I'm more similar to people without cancer than I am different from them. I know that, even though I often find it hard at the moment, the only way to approach leading a satisfying life is to make the most of right now and to focus on what's important. So even though I can't always achieve it, I suppose I feel fairly clear what I'm aiming for.

I'm not sure what this will be like to read - it feels rather muddled and I'm not really sure what my point is. But maybe that doesn't matter too much. I do have some photos to upload, but this post is long enough already so I'll save them for another - more upbeat! - post. Thank you all so much for your patience in bearing with me through this process, and for taking an interest in me and my well-being.