Saturday, 19 December 2009

life, hair and Christmas cheeer

It's a funny thing this blog. It could lead readers of it to think I don't have a life outside cancer. Not true of course, I've been entering into the spirit of Xmas a little, seeing Gabriel's rather wonderful school play, rather sad cos that's now the end of school Xmas plays; meeting up with some ex-SFO chaps and chappesses for a lovely meal and some extradordinarily good gossip which I couldn't possibly repeat here; making mince pies and jam tarts and ice cream and meringues and soups and stews; boring my poor cousin Mary to tears with our Ancestry research about the Zizecli branch of the family whilst enjoying the lovely photos from Bernadette and Fred's wedding and of the latest addition to the family, James Alexander (congratulations you two, he's gorgeous!); wondering why my house never gets any tidier. Does it take some input of which I am ignorant? I do wonder...

But back to the theme. There is some loosening of the old follicles but not yet by the handful. Without wishing to sound ungrateful I am worrying slightly that this is an indication the chemo is not slamming the little white ones hard enough. I know they are likely to reassure me at my oncology appt on Monday that some people don't lose their hair but, not to put too fine a point on it, I want to know if those are the chemo patients who keel over within two years. Does the fact that I have rarely in my life felt fitter than at the moment mean they should be doubling the dose?

The thing is I'm feeling a little disappointed at the lack of information I have been given about outcomes and what I can do to influence them. You would think it stands to reason that if certain things greatly increase the risk of certain cancers, then avoiding them would be even more necessary to avoid recurrence of cancer after treatment than to avoid getting it in the first place. But nobody has told me this in relation to anything.

So for example there is an established link between smoking and lung cancer. We all know about the 107 year-old grandparent who smoked 107 a day since he was born and died in his sleep without a cancerous cell in his body, but we tend nonetheless to accept now that not smoking is a good idea if you want to avoid it. This suggests to me that if you contract lung cancer as a smoker (and have therefore entered the realm of 100% having lung cancer), logically most people would expect that giving up smoking to avoid recurrence is a sensible step. Or conversely that continuing to smoke would be madness. So what about all the other things that have been shown or are strongly suspected to cause cancer and which we are beginning to be told the avoidance of could prevent many cancers if we didn't ingest/inhale/cover ourselves or our work surfaces with them? Nobody has told me whether my decisions to knock alcohol on the head for now (and certainly at the rate I was drinking before to reduce that dramatically forever), to eat less dairy or red meat are jolly sensible because they will help to prevent recurrence or pointless because the die is cast and in fact I am ****ing in the wind.

I am not raising this as a complaint because I want to know whether I needn't miss out on several bottles of Chateau varieux because nothing I now do can alter the risk of the cancer returning (although clearly I'd be mightily miffed if it turned out to be a wasted effort), but because I feel that the one thing you want control of is what you can do to prevent said recurrence. Obvious isn't it? Yet all I've heard thus far from the vast majority of those treating me has been a scathing dismissal of the Bristol Cancer Care centre and similar institutions for their approach to diet and its impact together with anything else that comes under the heading of complementary therapies (with the possible exception of physiotherapy). This despite a fairly clear endorsement in a lot of the pamphlets you get given. I rather mind this, as places like the BCC centre (now Penny Brohn centre), the Breast Cancer Haven in Fulham and the Maggie's Centres around the place appear to me to be looking at areas that should be mainstream advice on the NHS and which has been sadly neglected by it, the hole being filled by these totally admirable charities usually started by someone who suffered from that lack themselves. To have this all dismissed as quackery is in my view a quite appalling neglect of duty - all that anyone in my situation is interested in is how to avoid recurrence. If I have a cancer that is hugely hormone-caused and someone (thank you Mary!) tells me that chocolate can mimic oestrogen, I don't want to be met with the answer " a little of what you fancy does you good" if for me it is actually downright dangerous. The sacrifice of a little seratonin would be outweighed by the sheer delight at knowing I'm not hastening my possible demise - if I am in control of such decisions because I have been given the information.

If anyone has information they can point me to in this (although obviously I shall be pursuing my own research and trying to get answers from the hospital) please do send it to me.

By the way since I started writing this this morning I have tried on a number of precautionary hats and bought one. I think from the one that a little hair got caught in which came away without a hint of pain or resistance I can safely say the farewell process has begun, after all. Watch this (widening) space!

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