General status update
Radiotherapy, day 47
Fatigue/weakness: non-stop coughing makes you very, very tired. As does radiotherapy.
Nausea demon: ah, my lost love.
Anxiety level/insane euphoria (+/- 1-10,000): Unlike the Dexys, Prednisolone doesn’t engender euphoria – it just makes you PSYCHOTIC. See below.
Despair Demon: we’re thinking of entering into a civil partnership
Chemo Muse: telling me to stop whingeing and feeling sorry for myself and start doing something productive, which will make me feel better. I so hate it when she is right.
Chemo Brian: he says he has a contact who can get me some Dexys, no questions asked.
State of mind: inside my head, deep in the darkest recesses of my brain, I am curled up in the foetal position, whimpering.
Summer in north Yorkshire: buttercup meadow at BigSisFo's
The damage is done long before I have any awareness that I am acting strangely; that comes later, slowly, as I sit alone in a dark room surveying the wreckage.
So, when we last spoke I was in a bit of a bad way, wasn’t I?
I wrote the previous post on this blog 10 days ago in the middle of a truly dark night of the soul, tormented by the pain of extensive, suppurating radiation burns on my breast, wracked by the incessant coughing which may or not have been triggered by the effects of the radiation on my right lung, and essentially longing for death: desperately wanting it all just to STOP.
Which is why the Grim Reaper - alerted by the powerful bat squeaks of distress being emitted on that frequency into which only he can tune - had popped in around 3am and was sitting on the sofa with Chemo Brian, drinking R’s Laphroaig and playing endless hands of poker while I seriously considered ending it all. In the end he left shortly after dawn, disappointed, but telling Chemo Brian that he was sure he’d be back for a return match very soon.
That was a week ago on Saturday: a new personal low, after which things could only get better, surely?
Especially as I’d just been prescribed massive doses of steroids, in the form of Prednisolone, to shock my lungs back into good behaviour, and regular readers will remember that the single redeeming feature of the entire 134 day Chemo Nightmare was that Dexamethasone, the steroid they gave me for a few days at the beginning of each chemo cycle to alleviate the worst side effects of the chemo, made me feel fabulous: mentally energetic and delightfully elated or, as R described it: ‘flying’. Ah, happy days.
It takes five days for the Prednisolone to turn me psychotic.
Luckily for R, his presence was required in Geneva last week to chair a big conference on bioethics, so when I flip out, it isn’t directed at him. He offers to cancel, for which I love him even more, but I insist that he goes, thinking that he has more than done his duty over the last few weeks of My Radiotherapy Hell, and seriously needs a few days away amongst normal people doing normal things. It is unlucky, though, for BigSisFo, who has volunteered to look after me in north Yorkshire while R is away.
It’s always a joy to be at my sister’s house, especially now she's got rid of the rats: her 18th century farmhouse on the edge of the Howardian Hills has the most soothing atmosphere of any house I’ve ever known. I’ve always felt that it is a place of sanctuary, that nothing bad can happen to me there.
I was wrong about that.
The first two days chez BigSisFo are calm and uneventful; unusually my sister’s partner, the M.C., is working at home, which means a couple of spectacularly good dinners. On the first night there are fillets of brill with samphire on a bed of shallots and mushrooms -
(‘THAT is a Monday night kitchen supper?’ R texts indignantly from Geneva, where the food turns out to be rather less good than expected) - followed on Tuesday by the MC’s legendary truffle risotto (R: 'Next time YOU are going to the conference and I am going to your sister’s').
The coughing having moderated a little, I spend a lot of time asleep on the sofa, catching up after an almost sleepless weekend. Hank, the insane, humongous-balled Hungarian Vizla who rules the roost at BigSisFo’s, perceiving that I am unwell, not only brings me his favourite toy
but also elects to stay with me, keeping guard on the window seat as I doze on the sofa.
Hank is normally the most exuberant of dogs, but when anyone is upset or ill he metamorphoses into Hank, District Nurse – it is a strange and lovely phenomenon.
The trouble starts on Wednesday, by which time the radiation burns are finally beginning to heal, and the coughing has become more manageable, but I am also feeling increasingly agitated and restless inside my head. My mind seems to be ricocheting around inside my skull, as if on some kind of cerebral squash court, my thoughts are coming faster and faster and I start to feel rather aggressive, and very cross indeed. About everything.
By the time we are eating BigSisFo’s home-made pesto and linguine (made at my special request) that evening, I am like a volcano ready to erupt (this I know in retrospect - at the time I was quite unaware that anything was really amiss). My sister starts talking about the harmful effects of religion on human societies and, although I actually agree with her to some extent, my now-fevered brain decides to conduct a brutal forensic analysis of her argument.
Filled with a kind of mad glee, and addressing her as if I am a barrister for the prosecution and she is a hostile witness for the defence, I cross examine my sister, tear her argument to shreds, and berate her for her ignorance of the Enlightenment and its intellectual legacy, and for failing to realise that the 20th Century saw many more millions killed in the name of rationalism and Godless political movements than had ever previously been killed in the name of religion.
My sister and the other people round the table – my aunt and her partner – sit there open-mouthed as I deliver this vicious diatribe with enormous relish and demented energy. What I say is broadly true, historically: the ferocity with which I intellectually mug my sister, however, is truly appalling behaviour. At the end I am conscious of having bull-dozed everyone into submission, but vaguely aware that I may have overdone things a bit. After the guests have left my sister looks at me, says ‘That was both unnecessary and very unkind, Caroline’ and stalks off to bed, leaving me alone in the kitchen, dimly beginning to perceive that I have done something very bad to my sister who loves me and has been looking after me, and that all is not quite right in my head.
It’s the steroids, stupid.
Confused and agitated, I go up to my room: over the next few hours, my mind racing faster and faster, unable to sleep, I become madder by the minute. My existence has become unbearable, I am a trial and a burden to my loved ones, and it is time to end it all or just run away somewhere no one can find me.
I consider the escape options, my mind jumping from one idea to another.
At one point I decide I will take Hank, go outside, and find a field to lie down in and wait for death. Then I realise it isn’t cold enough to die of exposure – even in north Yorkshire in June – and that I will only end up getting very damp. I consider running a hot bath and cutting my wrists, but it seems very bad manners to kill yourself in someone else’s bathroom and besides, I’ve upset my sister enough for one day.
In the end I decide I will wait until morning and then run away to Scotland, perhaps to the Orkneys; R and my family will be much better off without me. I will find a nice beach and just swim out to sea. Then I start imagining how crabs will feast on my bloated corpse, and go off that idea.
I finally get to sleep at around 5am, still making escape-and-self-destruction plans; when I wake up a few hours later, my brain still racing and my heart beating very fast, I rush downstairs to find BigSisFo in the kitchen and make a grovelling and virtually unintelligible apology:
‘I think perhaps in the first instance you need to sit down and have a nice cup of tea’ says my sister.
In the end (BigSisFo having accepted my explanation of my uncharacteristically vicious behaviour and forgiven me) we decide that I need to stop taking the Prednisolone – of which aggression, suicidal ideation and general mental disturbance are not uncommon side effects – as a matter of urgency, because its effects on me are frankly frightening. I remember other people amongst my chemo buddies having similar experiences with the Dexamethasone, and having to stop taking it, sharpish. As with all these drugs, response varies widely between individuals and depends on your genetic make-up: I was lucky with the Dexamethasone, which made me feel just fine, but the Prednisolone quickly became a waking nightmare.
By the time I reurn to London on Friday, I am reasonably sane again, although still fairly wired. The coughing continues, though, over the weekend and has worsened over the last couple of days, so I have been forced to start taking the steroids again, although I have halved the dose in the interests of retaining my sanity. Some research in the medical literature has shown that it is possible to substitute Dexamethasone for Prednisolone in acute asthma exacerbations, so this may be the way forward if it doesn’t get better by Friday, when I am due to see my GP. I’d rather not go back to the hospital unless it becomes a dire emergency again.
I'm just so tired of all this now.
And the final insult: we missed the Bruce Springsteen concert at the Olympic Park on Sunday – for which R bought the tickets months ago as a post-chemo treat, because I would obviously be fighting fit again by the end of June - because I just wasn’t well enough to go….