CHALLENGING TIMES

After getting back from Germany I asked the Royal Marsden to compare my most recent scan from mid-July with the one done in January. I knew from Dr Herzog's feedback that there was a bit of deterioration, but I was shocked to discover that over these last 6 months there's actually been quite a lot of growth - in 3 areas of the liver, and 2 of those tumours doubling in size. It was devastating news and I took it hard, feeling extremely scared and overwhelmed. I've been lucky enough that since my diagnosis all the scans have been encouraging (showing small shrinkage or a stable condition), so this is the first time I've had to deal with bad news since the initial diagnosis. Back then I was so shocked and numb that I didn't really feel anything for several months, but this time I fully felt fear, in all its cold gripping visceral force - and it's a sensation which is pretty paralysing.

Initially the news also badly shook my faith in the German treatment - how cold they have not noticed the extent of the growth? and the fact that the chemoembolisations are no longer working? Chemo drugs, even when they're successful, will kill off only the cancer cells which are susceptible to that specific drug, and after that any cells which are left are those which are, or have become, resistant to it, so all drugs have a finite usefulness. I'd been told at the Marsden in spring 2011 that there are no second-line drugs for my condition, so I assumed that if the German treatment has done all it can, there was probably nothing further anyone could do. It was a pretty awful few days. On top of my fears about what the future might hold, I dreaded having to tell people that despite many recent comments about how well I was looking, actually things in my body were  falling apart. 

However I rang Dr Herzog, and he reassured me that the growth is likely to have been relatively gradual, a small amount each month, otherwise it would have been obvious to him and Professor Vogl, and that although clearly now a new treatment needs to be chosen, since my blood counts and general health are still good there's no need for panic. I realised then how I'd instantly assumed that I was about to fall very ill and might die within the next few weeks - perhaps an understandable reaction, but not necessarily accurate. Certainly almost everyone I've met with cancer has had treatments which work for a while, then they become no longer effective and a new regimen needs to be found - it doesn't necessarily mean the treatment has "failed" (or that the doctor's been negligent), it just reflects how cancer cells are always adapting and require new tactics for controlling them. Although of course deterioration can sometimes happen very quickly, more often it's quite a long process and there are many possible interventions along the way, even if they're all palliative. His understanding but very practical and undramatic manner helped me hugely by reminding me that although of course it's not good news, this is the nature of cancer, and going into "oh my God this is a catastrophe!" mode doesn't really help. 

I was due to go on holiday a day or two later, and had been on the point of cancelling it, terrified that I'd fall ill while I was away, or that even if there were any treatment options worth trying, by the time I got back it might be too late. However Dr Herzog told me that there was no reason to cancel the holiday, saying that I wasn't in any danger and a couple of weeks away wouldn't make any significant difference. Two of the nurses I spoke to at the Marsden when I was getting my blood tested said the same: have the holiday now before possibly starting new treatment (and while I'm still well) - after all, the whole point of trying to stay well is to be able to do nice things and enjoy life! So I arranged an appointment with the consultant at the Marsden to discuss treatment options as soon as I got back (I'll post again when I've worked out what the next step is), reined in the fear as best I could, and went ahead with the holiday. I'm so glad I did, as it was a wonderful break at a time when I badly needed something good in my life. See the next post for details!