Tuesday, 4 May 2010

sorry it's been so long...

There's something about radiotherapy appointments every single day that punches a hole in the time available to do things. But I should have reported sooner really...

Anyway this is (so far) infinitely preferable to chemo. I have not really had any effects from it at all yet, although I can begin to feel the burn approaching... just smear on lots of aqueous cream (yuk! the only thing they let you use cos it hasn't got any metals in it which is important apparently. The fact that it's entirely made of paraffin and therefore petroleum-based is something I'm just pretending isn't true. Find it easier that way).

I am dog tired generally but even that comes and goes. And part of that is still tiredness from the chemo which does knock you for six. They have told me that I will be exhausted by the end of it for certain. The funny thing is that the only time I have really felt tired so far has been in the car on the way back a couple of times last week - my wonderful friends who are being so kind and taking me in to the Marsden on a rota drawn up by Jackie have therefore been subjected to hippo-style yawning in response to their conversation. Absolutely no reflection of my level of interest in what they're saying, I assure you, in fact I'm sure it's the enjoyment of everyone's company in this way that is keeping me quite cheery about the whole thing. I decided the best way to deal with it being every single weekday is to think of it as going to work (let's face it it's about as much fun as my job became! In fact that's probably unfair to the Marsden as it's painless and only 20 minutes each day). And it is quite amusing observing the radiotherapy team (mainly women). Their conversation goes something like this, (although the detail of what follows probably bears no relation to what they really say or to radiography in general):
"11.4. Your side?" "Yes" " About 3 linear". "I've got 14 and a half" " That looks really lovely." "Up 2". " Yes that's not too bad on there".
Then they suddenly all scurry out looking for all the world like they're practising for the Olympic walking race events and switch all the lights on on their way. They put a huge 2'x2' lump of solidified wax on the boob which gets held on with sellotape (they've been told to make economies) just before they leave. Then the machine makes its "I'm a machine that's whining like this because I'm about to break/stuck in a ditch" noise for a few minutes, then they all scurry back in again at maximum walking speed. I have four of these and after 20 mins it's "bye-bye see you tomorrow". Piece of cake. (Yes I know I shouldn't say that and will suddenly have all sorts of horrible things happen now. One of the very rare side-effects is that you get a broken collarbone. Hoping to give that one a miss. There are some other rather horrible very rare side-effects and some that may kick in months or even years after it's all over but I can't be bothered to think about those).

I still have the painful heels from the chemo and the funny fingernails although they're considerably less painful than they were, which is nice, but still a bit numb which means I'm still dropping more things than I normally do, which is not nice. My taste buds are almost back to normal (THE most important thing) and my hair is growing back green (in time for election day maybe?). I suspect it may be the Tamoxifen but I am a bit achey when I stretch out my limbs. Unfortunately it becomes difficult to know which side-effect to attribute to which part of the treatment after a while - they all overlap. In addition the fact that the chemo can bring on the menopause prematurely (which it seems it may have done) means that you then have all the symptoms of the menopause to contend with as well, although they may be due to the menopause or the other parts of the treatment as they all overlap. Bit like the last two sentences really. The bottom line is things will never be the same again...

One final word about recovery. There is an understandable wish on the part of supporters of people who go through this sort of thing to hear that it's all over and everything is back to normal. In fact it is nothing like that and never will be with cancer. The end of the treatment is the end of nasty things being done to your body that are risky themselves to beat an even bigger risk to your life, and you come out of it a bit like a wrung-out rag. I feel and doubtless look a lot better than this would imply, but there will have been damage and disproportionate ageing to various bits of me. The follow-up sounds really quite minimalistic, and as I've referred to before on this blog, they don't give you an all-clear as such. You have had surgery to remove the obvious tumours, chemo to catch and destroy any floating cells that can't be detected on scans, and radio to kill any cells in the area of the tumour. It's at the most devastating scale that your body can withstand and hopefully it will do the trick. The follow-up basically is a mammogram for the next 5 years on the other breast (then you're into the usual screening programme) and the rest is down to you to report anything you think is not right. The bumph says that numerous trials have shown that any greater followup does not produce any greater rate of detection of recurrence. The "prognosis" they give is usually talked about in terms of survival/years, but they can't say any one person will live for another 3 weeks or another 30 years - it all depends on whether it comes back, and if it does there aint nothing you can do about it except get it treated again. So I'm rather hoping people won't ask me that question any more, because I can't really give a satisfactory answer and it's not that I'm being evasive or lying or hiding from the truth - it just really is like that with cancer. No news is good news because there is no guarantee, any more than there is any guarantee that any of you without cancer will never have cancer.

And on that sunny note, I wish you a cheerful good evening!


  1. Hi Belinda! Thanks for the update - I was beginning to worry and didn't want to call.
    Excellent summary by the way, thank you, and good wishes for the rest of the radio treatment. Was aiming to come up to London during half-term but have fallen over and broken my foot (and no, not due to an excess of red wine!). Hope to be able to drive by mid-June so will be in touch. Love to all. Helen & Co (Marlborough)

  2. Thanks Helen, bad news about the foot! Take it easy and get the kids running round after you - I've found it's great fun! xx