Not dead yet or how long have I got?

Posted March 25th, 2009 by Jane

I begin to realise that there are people who think I’m about to drop dead in the next few weeks. Well no guarantees but please… be sensible.. from the place I’m at now..this is not likely.

I have never asked my oncologist ‘how long’ though I did ask my first oncologist at our very first meeting what he thought my 5 year survival statistics were…and he said: 40-50%. As most of you know I managed to be in the not dead group at 5 years. That doesn’t mean that I somehow ‘beat’ the oncologist’s estimate. He was simply telling me how many people with locally advanced breast cancer are alive after 5 years.

I don’t ask ‘how long’ because I know that the honest answer is ‘I don’t know.’ I have for the past 2 years taken the view that I could be dead in 6 months or less, or it could be longer. Actually privately in April 2007 I thought I’d die in November 2008…but the month came and went…not dead yet.

It’s this decision to stop chemotherapy which has thrown people. My decision is partly because I don’t want to endure any more chemo based fatigue, but also because an objective dispassionate consideration suggests that none of the available chemotherapy options have actually worked. I expected cancer to be rampaging through my liver, lungs, bone by now…and perhaps tomorrow I will fall down in the street in a fit and brain metasteses will be found. Then indeed I might be dead in 3 months or less but I have lived with that uncertainty for five and a half years now.

But right now the cancer is trundling along slowly…more nodes here and there, a bigger lump in my neck, some dodgy nodes in ‘the small bowel mesantry’ (BOWEL I shriek at the oncologist as she soothes me that they’re not actually in the bowel, and have uncertain significance. I’ve had nodes in other unknown bits of my body of ‘uncertain significance’ on other CT scans…not a word this time.)

Yes the speed of progession of the cancer may now escalate..or it may not…death by cancer depends not just on treatments failing but on where and how it spreads…indeed if more research was devoted to the process of cancer metastesis rather than to tumour growth then a cure would be that much nearer… Believe me please that the cancer I have is so far a lot slower moving than the breast cancers of so many of my friends who have died.

I’m really touchy too about what I call ‘beat the oncologist guessing game’ The game goes like this:

Patient (scared): Have long have I got?

Doctor(cautious): Well its difficult to say but perhaps 1 year-18 months, but this depends on response to treatment blah blah

Patient (indignant): My doctor has given me 1 year-18 months. (defiant) I’ll show him/her.

Patient to another patient: (I won!) Well I was given 1 year-18 months 3 years ago and I’m still here…

Other patient: Oh you are such an inspiration. Keep fighting!

As ever in cancerworld the patients who lost the game and died in 3 months are airbrushed out of public memory. In cancerworld like with like is often not compared, myths proliferate.

I guess for me there aren’t really any statistics because my presentation has been so relatively unusual. If suddenly cancer spreads to my liver then yes that shortens the odds, but if it continues to persist in its indolent fashion, then I’ll be here for a little while yet. In fact I’m getting so cross about the expectation that I won’t see the summer out, that I might start joining the ranks of the warrior brigade..