General status update:
Hair: Finally took it out of its wrappings just now. It’s whimpering, but then so am I.
Nausea demon: Woke me at 5.30 and we saw in the dawn together, and then it all got a bit nasty as the Despair and Rage demons turned up and started to party. Good thing there weren’t any oncologists within striking distance.
Chemo Muse: She kept me scribbling for a while, which kept me from breaking things, or heading for the window…
Chemo Brian: At 9am I took a Lorazepam and lay down on the sofa with him, holding Chemo Rat Brian in my arms, and we all slept until lunch-time – several peaceful hours of blessed unconsciousness. In my dreams there is no Chemo; in my dreams there is swimming.
Sleep, lack of: After a difficult few hours around dawn, I was able to sleep for much of the morning, for which I am profoundly grateful.
Anxiety level (1-10): Have been unconscious, mostly; now I’m awake again, it’s resigned despair, rather than anxiety.
State of mind: The Giant Black Hole of Despair and Hopelessness which opened up this morning has moderated into some kind of acceptance, knowing that in a couple of days’ time I will be feeling much better.
As is now customary at this stage of the FEC cycle I am woken very early by nausea; by 5.30 I am sitting at the dining table eating yoghurt and banana - which I don’t want- because it’s important to take all the anti-emetic drugs with food.
Yesterday - Day 5 of FEC3 - was extremely bad, the worst day of the whole chemo experience so far, and while at least I got some sleep, another day of equal hideousness now lies ahead. I’m in a state of acute mental and physical distress, and belatedly realising that the physical side effects of the chemo drugs are only part of it, because feelings of extreme psychological agitation – anger, paranoia and despair - are playing an equally significant role in their impact on me. This happened last cycle, when I turned into an insane, snarling harpy on Day 5, and did my best to drive R away, and yesterday it happened again.
It is unfortunate that day 5 of each cycle is on a Sunday, so that he is forced to witness me at my worst: on the one hand, it’s a comfort to have him around, but on the other I hate him being exposed to the tormented thing that I have become, lashing out at him like a wounded animal – which, of course, is precisely what I am.
I am still sitting at the table as the dawn breaks, and my mind takes up yesterday’s rampage where it left off: full of rage, hating all the smug healthy people who have no idea what it’s like to be at the mercy of a body that is trying to kill you, or of how vicious the ‘treatment’ is, and who say such stupid, thoughtless things, and hating the oncologists who inflict the horror of this treatment on you so lightly, saying it’s ‘well-tolerated’, when they have NO IDEA what it feels like to experience chemical weapons poisoning their body from the inside, and ‘well-tolerated’ only means that it doesn’t actually kill you (except for those in whom it triggers leukaemia later on).
I’m even hating the chemo survivors on the BCC UK forum who say chemo is ‘doable’, because at this point in my chemo experience I am beginning to realised that 'doable' is ONE OF THE BIGGEST EUPHEMISMS OF ALL TIME.
It's perfectly doable when you're unconscious, I find.
Awake, not so much...
Not at this stage of the chemo cycle, anyway.
Right now, I hate them ALL, and I’m wondering how I can possibly endure 3 more cycles of this – I’m now at the worst part of FEC cycle 3, and the thought of going through exactly this experience AGAIN with FEC4, FEC5 and FEC6 just makes me want to howl out loud with anguish.
In one part of my brain, where there is still some small trace of sanity left, I know perfectly well that in the annals of human suffering, what I am going through is really very minor indeed, that I can and will get through it somehow, and that in a few months’ time I will have my life back, more or less. For the time being, at least.
I am also well aware that humans are fragile, time-limited organisms, born to suffer, something Western culture these days mysteriously chooses not to acknowledge, at least since the decline of organised religion. The idea that suffering is unusual or unexpected is a delusion created by Western consumer society, with its insane sense of universal entitlement: not only do we regard death as an optional extra, and expect somehow to be exempt from physical suffering (despite being very willing to inflict it on all sorts of other animals), but we even demand to be happy. Later, more sensible eras will look back on the mass psychosis of Western civilisation in its last centuries of decline, and wonder at the vast stupidity of it all.
I blame the Enlightenment, myself – the Perfectibility of Man is a concept which has led us into all sorts of dangerous delusions… but I digress. And I’m not up to an in-depth discussion on the very strong arguments for the Imperfectibility of Man right now.
At least it has made me channel all this inchoate rage into some kind of thought, for a while. I’m seeing now that it’s actually much harder to get away from the mental effects of the chemo than the physical ones.
With the physical symptoms you can, to a certain extent, remove yourself by taking your mind away from the lived experience of your body, and refocusing elsewhere – it takes a huge effort, but it can be done, and I’ve had some little success with that, with the help of the Chemo Muse. Yesterday, I spent a lot of the day writing: this forces me to concentrate, to move the internal focus of my mind away from the horribly unpleasant physical sensations I am experiencing within my body, and towards the abstract shapes and rhythms of language and its construction into small edifices of meaning. I live within great clouds of words, much of the time, swirling around in my head like vast flocks of birds, and there is some relief to be found in chasing some down and finding a way to shape them into something, and then marking that shape into physical being in my notebook or on a computer screen.
That’s manageable, to some degree, when the distress is physical, but the mental effects are much harder to escape; the torrents of anger and sorrow and rage and despair flood your system, overwhelming language, and merge into an undifferentiated, wordless howl of anguish.
There’s comes a point when words just don’t work anymore.
R, when he wakes, comes in to the room and finds me sitting at the table, head in my hands, weeping, once again completely overcome by the horror of it all.
‘I didn’t want to wake you’ I say ‘I’m sorry, I’m so sorry I’m like this all the time.’
“Don’t hide from me in here’ he says ‘I can’t look after you if you hide from me.’
He draws me down onto the sofa and says ‘ What you need right now is a cuddle, that’s all. C’m here.’
Curled up with his arms around me, feeling the solid warmth of his body against mine, the steady rhythm of his heartbeat, and the whisper of his kisses on my forehead, I begin to calm down.
R steps straight into the heart of my emotional storm, and drives it away; he soothes me, and calms me, and gradually the great black hole of pain in my head starts to shrink down into itself and then, slowly, dissipates.
R reinforces the physical soothing with soft words of consolation, reminding me that we have been here before, that it will pass, that in a couple of days I will be feeling much better, and by then we will be half-way through the chemo.
By the time he leaves for work I have edged my way back from the precipice, and the howling thing, the ball of elemental rage I briefly became has slowly metamorphosed back into a person; once again, in extremis, love has done far more for me than any pharmaceutical ever could.