Years ago I had a boyfriend - a rather drunken and not untalented artist, now long dead - in part because of said drunkeness - whose main reason for his presence in my life was his total unlikeness to the previous occupant of it. He had a pessimistic
bent, though, one effect of which depresses me to this day, come late June, early July. Every year within a week of midsummer he would say ' don't you notice how the nights are drawing in?" Well I didn't actually. Nor did I want to think of the days drawing
in, particularly when, in consequence of the English climate it seemed that summer had scarcely begun; who wanted to contemplate the inevitable coming of winter which such words miserably evoked. And which they continue to evoke every year, damn it, reminded
of him at such dates whether I want to be reminded or not. I hasten to add here, reader, that I didn't marry him. Sensibly enough. Not that there was, ever, any likelihood of such an event.
The days do draw in somewhat this year in other respects.
The oncologists have it. There were two of them; a young, very thin, Italian, an oncological fellow working in London because, despite promises, despite being fully trained no consultancy was forthcoming. (In Italy one has to remember, such perks rather depend
on who you know/are related to.) Hence her living in Sutton, the Marsden's other branch, raising a two year old son with the help of an au pair, her husband visiting from Italy, every other weekend. She had to leave abruptly to pick the child up.) She and
I rather took to each other - as is suggested by my gaining such information from her; one of the interesting things about the number of people you are at close if brief quarters to in the pursuit - you hope - of eventual health, is the way mutual chemistry
asserts itself very quickly - or fails to; or is just neutral. The thin Italian's boss, the full consultant, who turned up next, also thin, but less so, neat, and rather shiny, metaphorically or otherwise, was less sympathetic - a matter I partly judge because
I could not make her laugh, one fail-safe procedure I try and use in these encounters for both our sakes. She also got a bit snippy at the suggestions that I had a life, and that maybe, sometimes, the nasty procedures she was offering would have to fit in
From which you may gather, dear readers, that yes, I did acquiesce, I did agree to some at least of her nasty procedures. For very good reasons. I had sat up making my lists, setting my bottom lines, and the bottom line in this case
was the state of the two naughty nodes that had been removed from me by the surgeons. Had they been whole, undamaged, so that none of their undear little cells could have escaped, I would probably have said no. But they were in fact far from undamaged. And
as for the stats - another criteria - though very unclear, because the small population of patients like me, BRCA1 patients with triple negative tumours (if you want to be technical that means not receptive to oestregen, progesterone, or HER2 - look all that
up if you're interested) means the stats cannot be considered entirely significant. The nearest guess being a 30% chance of recurrence without chemo, a 15% chance with. That 15% seemed telling enough. So I caved in; with the one proviso: I would not accept
treatment that risked this nasty thing peripherable neuropathy making walking painful. (See picture. I do not want to be like this; yet.) As it turned out the first series of treatment does not involve this; merely possibly, heart damage, leukaemia (pretty
unlikely: but) nausea, brain fade, exhaustion, hair loss, low white cells, meaning a crashed immune system, etc etc etc, all more likely. Didn't I say cancer treatment is brutal: Only the next phase of treatment might induce p.n. In this case it's taxol -
the poison of the yew tree, an ancient medicine/poison, one reason for shutting cattle and sheep out of churchyards where yew trees tended to grow: a tree of death in every sense. Unlike the other poison, adminstered at 3 week intervals, the treatment with
Taxol is accelerated; the more accelerated the more likely to induce the problem. Given at wider intervals it is less likely to produce the dreaded pins and needles. Not least the symptoms would appear at a low level at first, meaning that I could at this
point jump ship and so reverse the problem; and I would jump, believe me. Not being able to walk would be - have I said it - I'll say it again - a fate worse than death.
(One observation - that departments in a hospital, despite seeing patients either
end of the same waiting room do not appear to communicate. The oncologist told me there has been a long discussion during their case meeting as to whether this patient, given her age, would be able to cope with such vicious treatment. But obviously I could
she'd decided taking one look at me, and noting my lack of all other problems, medications etc. Mid 60s the surgeons had judged me; early 60s she thought. Better communication here - and closer look at my notes - might have saved them quite a lot of time discussing
There was one other, more hopeful note. If I achieved enough treatment I could be entered into a trial - the trial of an approach suggested long ago - twenty thirty years ago - when I was told that I needn't worry about my grandchildren, a simple
pill would settle the hash of their impertinent gene. The trial is of gene therapy in other words; a means of turning off the way in which our genetic mutation mean that the production of repair cells does not stop when enough have been produced - the way
a stopcock prevents flooding -but continues ad infinitum, meaning they turn into the naughty kind of cells which is the cause of all our trouble. A micro-biologist I daresay would shudder at this very crude lay description, but I think that is roughly it.
Understanding how our cancer works is something that intrigued this far from scientist from the beginning; if you've got to suffer the bloody thing you might as well derive some intellectual interest from it; up to a point. (Beyond that point I have
to say I'd rather not go. There are nightmares preferably never known and certainly not in advance.) Anyway, in a double bind trial I'd have a 50% chance of getting some advantage from this new gene targetted approach; the only chance, given that it would
not come onstream for several years thereafter, assuming it works, having to be approved by a load of committees, and given what is likely to be an exorbitant price, pharmaceutical companies being how they are, declared acceptable by NICE. So let's hope p.n
does not appear and I do manage to imbibe through abused veins the required amount of treatment.
None of it will start to be imbibed till late July. Meantime, the present weariness and much of the soreness abating somewhat, I get some time to become
well again - wellish. This morning I did a very short and tentative session in the gym. It was good. The sun is out, Wimbledon begun, a young Brit won and good five set match and I am stretched on my bed writing this, weary but comfortable. Having dreamed
of chemo three nights in a row, the dread abates - slightly - because what is the point of going on dreading it. And who knows I might be one of those who sail through it all easily.....Keep walking, Penelope, keep walking.
And oh yes, I am angry.
Diagnosed 6 months earlier, as I should have been but for recently determined medical protocols I wouldn't be facing this. Something I will explain in another post.
Tomorrow to acupuncture. Oh what fun life is; so very full of needles.. But these
needles, at least, I choose.