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’mSOSORRREEEEI’mSOSORRREEEEIwasnastytoyouIdidn’tmeanitIcouldn’thelpitthesedrugsaremakingmyheadgofunnyit’sallgoneveryDARKandSPIKYinsidemyheadandIcan’tstopmybrainit’sjustgoingFASTERANDFASTERandIthinkI’mgoingCRAZYandIdon’tknowwhattoDOI’MSOSORRREEEEEE’
‘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….
