A YEAR ON

Sorry, there are no nice pictures on this post! It's a year ago today that I got my diagnosis, and I've found myself going over it all in my mind. I don't know if the details of that time are something that people want to read, but I feel some kind of need to tell the story, contradictions and all - perhaps partly because at the time I couldn't put into words a lot of what I was feeling and thinking, and it's only now that it feels possible. 


I'd had a CT scan the previous week and been told to come back in 6 weeks for the results, but 5 days later I got a phone call from a specialist nurse asking me to come for a biopsy. I knew that meant there must be cause for concern, and I was very scared. I went in for the biopsy 3 days later, and was met by the nurse, who told me the scan clearly showed metastases (secondary cancer) in the liver. The biopsy was to try and determine where they'd come from. 


It was the most awful news to hear, but it wasn't a complete shock - I think I'd known since the phone call that it had to be cancer. I had a lot of time to digest it, as although the biopsy was a fairly quick procedure there was a lot of waiting around first, and I had to stay under observation for 6 hours afterwards (because of the risk of bleeding). By the time that had ended it was too late to discharge me so I spent the night on a ward. In hospital you're in public all the time, so I didn't feel I could cry - instead I kind of held it all together by working out what on earth I would do. Perhaps also being on my own I didn't dare give in to my emotions in case I lost control completely. I decided I would only tell my sisters and father straight away, and that I'd give myself a week's grace, until after the results appointment, before telling close friends and work. I wasn't at all sure whether and how to tell all my various friends, relatives, colleagues and acquaintances (a huge number when I added them all up), but I did at least end up with a plan of how to get through the next couple of weeks. I eventually got discharged at midday, went home for a shower, and went straight into work for the afternoon, which was actually an enormous relief, as I could focus on other things and feel vaguely normal again.


But I knew straight away that I couldn't deal with the diagnosis while trying to maintain my work role - or cope with work while trying to take in the diagnosis - so it felt very clear that I needed to stop work once the chemo began. I coped over the next few weeks by being extremely focused on tying things up in my job, winding up therapy with all my clients, and handing over everything else which I couldn't finish in that time - I reluctantly delegated running a workshop, presenting at a national conference, and leading a concert, all of which I was due to do in the following weeks - and it felt as though a phase of my life was all-too-abruptly ending. What I didn't tell anyone was that I assumed I hadn't long to live - my mother only survived for 3 months after being diagnosed with secondary cancer in the liver, and I imagined it would be the same for me. I was never given a prognosis in terms of time (and I would have shouted down anyone who tried to predict it), but as I researched cancer of unknown primary (and later cancer in the bile duct) I couldn't help coming across the very poor outcomes. In addition, the doctors didn't want me to delay starting chemo even by a week, and in spite of their calm measured manner outwardly I picked up their sense of urgency, which was very frightening. Although I didn't articulate it to myself at the time, with hindsight I informed a lot of my acquaintances basically because I didn't want them to find out later that I'd died without them knowing I was ill.


However at another level I couldn't really believe I was dying, as I felt reasonably OK, and there was no question in my mind that I would do everything possible to improve my chances. I held onto the fact that statistics only give average outcomes, and there are always outliers who do much better than expected, and I focused completely on being one of those exceptions. As time went on, and I discovered that chemo was manageable (and, significantly, once I'd passed the 3 month point), I started to think perhaps I'd been melodramatic and misguided in fearing the worst. Although I was relieved to be feeling fairly normal, it was confusing having such a serious condition without any major change in my day-to-day functioning. It wasn't until I met Dr Herzog in June, and described my symptoms at the time of diagnosis, that he gave me some perspective by saying that if I hadn't had treatment when I did - or if they hadn't immediately managed to find a combination of drugs that worked - I would certainly not be alive now. He repeated this at my last visit: given the extent of the disease a year ago, and the aggressiveness of it, without treatment I would definitely be dead by now.


Oddly that's been reassuring to hear, as it validated my sense of how serious my situation had been (though, till recently, it felt like it would somehow have been tempting fate to put it into words). All the same, it's very hard to get my head round how lucky I've been - to respond to the initial chemo, to buy enough time to investigate a range of therapies, and to find a combination of conventional and alternative treatments which - at the moment - seems to be keeping things stable. (And of course I'm extremely lucky to be able to afford the clinic in Germany.) Superstitiously, it was only a few weeks ago that I let myself believe I would really make it to a year - and I certainly would have never imagined I'd do so in a pretty good state of health. Of course I know that things could change at any time, but all the same it's pretty incredible. In fact it's almost too big to take in at the moment - perhaps I'm still afraid of jinxing myself if I were to feel too pleased! - but it seems extremely important to fully appreciate and feel grateful for being alive and able to do most of the things I enjoy.


I don't know what this will be like to read - presumably some people will have known the seriousness of it all at the time, others perhaps not so much. But it's not easy to talk about in person (existential matters don't make very comfortable social conversation!), so it feels important to say it here. And the other thing I want to say is how blown away I've been by all the support and love I've been offered in this last year. A lot of the time I've found it quite hard to deal with - either because it reinforces how shocked and upset people have been for me, or because I haven't wanted to acknowledge that I need any help, or because I haven't really known what anyone else can do - but I am still extremely grateful for those expressions of caring. Thank you all so much.