Day 26:
General status update
Hair: So
happy in the snood, it might well refuse to come out again after the prescribed
48 hours is up. It could do with an extended holiday, away from all this stress; it
wants a Snood Sabbatical until the chemo is over.
Nausea demon: Rampant
– see below
Chemo Muse:
On steroids, she is TERRIFYING. I just obey her, meekly.
Paranoia Demon: he
has a few points he wants to make, but right now, I’m too busy to listen. Thank
you, Dexamethasone.
Chemo Brian: lying
on the sofa, asleep; I think the Chemo Muse slipped him some of my Lorazepam.
Mouth: holding
up – am singlehandedly responsible for major sales upturn in children’s toothbrushes
at the King St, Hammersmith branch of Boots.
Sleep, lack of: slept
OK last night despite the steroids, mysteriously. Win.
Anxiety level (1-10): see Paranoia
State of mind: Can’t
talk about that now, I have a blog post to write.
Remember that picture of Bradley Wiggins, sitting on
an outrageously kitsch golden throne at Hampton Court, smirking and making V
for victory signs with his fingers after winning the 2012 Olympics time-trial?
That’s the Nausea Demon, tonight.
Another cycle of FEC, another nausea meds crisis: the
Nausea Demon has been fighting back hard, and it isn’t until after I start
vomiting quite violently early this afternoon that I realise that they had
sent me home from the hospital on Wednesday without one of the anti-emetic
drugs I had last time, Ondansetron (I am now taking so many different ones, I
didn’t realise one was missing until the vomiting made me check).
Ondansetron is
one of the powerful, expensive meds; they gave it to me intravenously, before
the chemo, but they didn’t give me any tablets to take home, like last time. I
remember that last time round they gave me enough tablets for two cycles, if
you took them at the normal rate of 3 a day for 3 days. But the nausea last
time was so bad, I used up the whole lot while I spent another 3 days trying to
get some help from the malfunctioning 24/7 Chemo Emergency Help Line. This
seems likely to be the root of the problem. I just need to get a supply of
Ondansetron.
The vomiting and dizziness is getting pretty bad, so
I have to work out what to do. The GP had added all the anti-nausea meds to my
repeat prescription list, and the doctor’s surgery is closer than the hospital,
so that seems the best first port of call.
I walk round to the doctor’s surgery, in the hope of
being more effective in person than on phone, and explain my dilemma. It
turns out that this particular drug was the only one that had not been added to
my repeat prescription list – perhaps because you’re only meant to take it for
3 days, and they give it to you to take home - and the
receptionist offers me a telephone consultation with the doctor at 11a,m. on
Monday morning, in 3 days’ time.
She knows I am a chemo patient, because I have told her, and
I am standing there in my snood, looking like death warmed up, sick and
desperate. These things I know because I unfortunately
caught sight of myself in the mirror in the hall as I was leaving the flat.
That would probably have been a good moment actually to
vomit, right all over her desk. However, as per the doctor’s instructions after
the last time this happened, I simply say in a firm but courteous voice
(albeit also in a clear and carrying tone, so that everyone in the waiting room
could hear):
‘Actually, Dr
Slater has told me that as a chemotherapy patient, if I have an urgent problem,
I can ALWAYS speak to a doctor on the same day’.
The receptionist’s mouth purses like a cat’s arse, and
I swear her hair actually bristles.
She looks at the computer and says, brusquely, ‘Dr Skinner will call you between 5.30 and 6.30pm’.
‘Thank you very
much for your help’ I say, and leave.
Back home, this quick and simple fix having failed, and
dubious about whether the GP would prescribe me the Ondansetron anyway, what
with it not being on the prescription list, I consider the various ‘calling
the hospital’ options. I call and leave a message with the oncology secretary,
to say I was being very sick again, and to ask her to check with Stan if I
should have been issued with Ondansetron to take home. No reply after half an hour. She may not work Friday afternoons,
or be on holiday.
I know I won’t get any joy from the Chemo Day Unit,
after last time – this is not their area – so I wait until 5pm to call the
24/7 chemo Emergency helpline – you remember, the one that was out of order for
2 days while I was trying to get help with my first nausea meds crisis.
While I wait for 5pm to come round, I look
again at my personal chemotherapy record book issued by the hospital, in which
are written all the drugs they administer to you in the Chemo Ward, and are
given to take home, for each cycle; it also includes a handy guide to all the
possible types and levels of side effects, colour-coded in green, amber and red
in terms of requiring urgent attention.
My current level of vomiting and dizziness is an Amber
Alert, it seems: this means I should contact the help-line IMMEDIATELY for further
advice. Good; it seems I am not making a fuss over nothing. I’m English; God
forbid I should make a fuss over nothing.
This time, the help-line works, the on-call oncology
houseman is paged, and I explain the situation, and outline my reasoning that
it is probably the lack of Ondansetron which has led to my current level of
gastric distress. The oncologist agrees with me, asks how far away I am from
the hospital, and tells me to come straight to A & E, where they will check
me out to ensure that nothing worse is brewing, and give me some Ondansetron to
take home.
I thank him, and text R to say that I have to go to
the hospital to get some more meds, but that it is not a major crisis and he
doesn’t need to come with me. Tonight he is having a rare night out, at the
leaving drinks for a colleague about to go and work in New York, and I don’t
want to spoil it. He needs a break not just from me and the cancer and the
chemo, but other burdens he is bearing, which are not mine to share here. Before
my diagnosis, 4 months ago, I was helping to support him with these other burdens;
now, I have been added to the list. This upsets me more than I can say. I’d
rather not tell him at all, but I know he’ll be furious if he only finds out
about it afterwards.
We speak, and I manage to convince him that his
presence is not required , and would be positively unwelcome; I will be down to
the hospital and back in no time. He is very dubious, but eventually agrees.
Good. I can do this myself. I am not going to be a burden 24 hours a day. I can
retain some self-respect.
I walk down to the hospital – the saving grace in all
this is that we live near enough to walk there – and, clutching my Red Chemo
Book, explain my dilemma to the receptionist, who immediately arranges for me
to be admitted directly into A & E. She could not be more helpful. I sit
down to wait, and am called in by the A& E Triage Charge Nurse 3 minutes
later.
He is a perfectly lovely man called Sam, and I explain
it all over again to him. He agrees the lack of Ondansetron might well be the
problem, and asks me if I think I will be OK to go home, just with more
anti-nausea meds. I say, absolutely, I’m sure it will do the trick, I REALLY do
not want to be admitted to the hospital, I’m sure that if I get some
Ondansetron it will make the nausea tolerable again and I’ll be JUST FINE.
Sam looks doubtful. I’m feeling quite woozy, and I’m
probably looking and sounding utterly wretched, so maybe that’s why. He takes
my temperature (OK) and blood-pressure (high, but that’s hardly surprising), and
goes off to see the registrar–in-charge. The registrar wants bloods taken, to
be thorough.
When Sam tells me this on his return he adds that I am
entitled to refuse, which puzzles me – why should I mind that they are taking
every precaution? I am in no state to ponder the finer points of my Patient’s
Rights at this moment, and can’t see why I might be expected to object to blood
tests. I’ve had dozens of blood tests in the last few months – one more won’t
do any harm. Is Chemo Brian making me
miss something, here? I’ll have to take it up with R, later; he’s a Professor
of Bioethics, maybe he can explain it to me.
I tell Sam, earnestly, that they can do whatever they
like to me as long as they will stop me feeling this sick. He takes the blood,
and rushes off with it for immediate analysis. At this point I realise that
they are quite concerned, and that this is my first real chemo emergency. Sam
comes back and escorts me through the ward into a treatment room, to wait for
the doctor. I bid him a fond farewell. Five minutes later another nurse comes
in and tells me they want to give me some Ondansetron intravenously now, to
alleviate the symptoms while I wait for the doctor. I say I think this is a
TERRIFIC idea, and roll up my sleeve so he can inject the drug into the PICC line
on my arm-
PICC lines are wonderful!
So handy in an emergency! Every chemo patient should have one!
- and then he changes the dressing, and leaves me
sitting on the bed to wait for the doctor. From the next room I can hear the
sound of a woman retching, over and over again. Occasionally she has to pause
to breathe, and then it starts up again. Wednesday was a very busy day at the
Chemo Ward – maybe tonight is Vomiting Friday at the A & E, or maybe she’s
just drunk. For her sake, I hope it’s the latter, because if it's chemo-related nausea, then she sounds far worse
than me.
I continue to sit upright on the bed and, despite the nausea,
and the wooziness, and my increasing exhaustion, I resist the by now almost
overwhelming desire to lie down, and close my eyes. I do not want the
doctor to come in and find me in a state of collapse, and then insist on admitting
me overnight. As long as I am sitting up, I am not utterly defeated.
I HATE this – this ricocheting from pillar to post,
desperately begging for help. It reinforces the sense of a complete loss of
control over my life, now that I am a cancer patient, a chemo patient, at the
mercy of the disease, the drugs, and the doctors.
I am sitting lower down now, leaning on my capacious,
cushion-like handbag, but I AM NOT GOING TO LIE DOWN. And now there is some
help from the Chemo Muse who is, from a distance, observing this situation with
huge interest, and is now instructing me to get out my notebook and write a completely
contemporaneous account of it, seeing as all I’m doing is just sitting here on
the hospital bed feeling sick and dizzy, and not otherwise usefully occupied.
Yes. Good plan. It’s better to get out the notebook
and start writing, than lying down. I AM NOT, NOT, NOT GOING TO LIE DOWN.
It’s 7.20 pm, and I’ve been here for about an hour
now, and I’m so tired and sleepy, and it’s getting harder and harder not to lie
down. I wish the doctor would come. The nausea is starting to abate a little
after the injection, but I am so tired. I so want to lie down on the bed. But
then the doctor will come in and find me lying down and looking helpless and
like a VICTIM and that would be bad. The only way I can keep any control of
this situation is by NOT LYING DOWN.
7.43 pm The doctor comes – her name is Nia, she’s
Welsh, and she’s lovely. She takes me through the whole saga again. She says if
my bloods are OK, and I can drink a cup of water and keep it down, then they’ll
let me go home with enough Ondansetron to get me through the night, and a prescription
for more from the hospital pharmacy I can get in the morning. Good.
Nia apologises for all the tests, and everything
taking so long, but they have to be super-careful with chemo patients because
the risks are so high. I say that’s fine by me, it’s all fine, I’ve seen the video
on neutropenic sepsis and know they need to be absolutely sure I am OK to go
home.
Throughout this conversation I remain sitting upright.
It strikes me that the worst thing about this calling
for help business is the sheer number of times you have to explain the
situation to different people – since this afternoon I have repeated the
problem to the GP’s receptionist, on voice mail to the oncology secretary, to
the on-call oncologist on the Chemo Emergency Line, to the A& E
receptionist, to Sam the Triage Charge nurse, and now to Nia , the A& E doctor. That’s six times. No wonder I’m feeling so
tired.
Still. If we get it sorted out now, then it won’t
happen the next time; although that, of course, is also what I said to myself the
last time this happened.
Never mind.
Its 8.37: I have drunk the water, the bloods are OK, and Nia has gone away to get the meds for me to
take home, which may take a while. I’m still writing, leaning ever more heavily
on my bag, but I AM NOT LYING DOWN.
It’s 8.50: I suddenly realise I am not going to get
home in time for 9 o’clock, when a new series of ‘Have I Got MORE News For You’
will be starting on the Dave channel, which is thoughtfully providing this
series as a service to HIGNFY addicts feeling bereft after the last series
finished at Christmas.
For some reason, this pisses me off more than anything
else that has happened all day.
I am so tired, I really, really want to lie down now.
NO NO NO.
The doctor will be here any minute with the meds, and
then I can go home
9.00 Nia comes back, apologises for the delay, and
says there is only one pharmacist working after hours. She agrees to let me get
off the treacherous, tempting bed and go to sit on a chair outside while I
continue to wait for the meds to come.
Excellent. No more need to lie down – in the chair I
can lean back and close my eyes, It is so much more comfortable than trying to
stay upright on the bed, I start wondering if I’m going to get my blog post out
tonight. My self-imposed deadline is at midnight, Cinderella style, to ensure
that a post is published every single 24 hours during my 100 or so days and
nights of chemo. It’s important; mustn’t let standards slip.
There may not be time to proof read and edit it properly
before I publish it, so (and I am now typing this furiously at 11.26 pm) I will
apologise to you now if this is full of typos. But I have to publish it before
midnight because otherwise the Fecking FEC has Fecking won, and that IS NOT
GOING TO HAPPEN, ok?
9.10 Nia brings the meds, and I am allowed to go home.
I walk back from the hospital, enter the flat, sit straight down at the computer
and, at 9.31, I start to type. I am starting
to feel better: the Ondansetron is working, and the nausea is abating, and the
fresh air has revived me enough to carry on.
Thank you, Sam, thank you Nia, thank you on-call
oncologist on the Chemo Emergency Help Line – between you, you’ve managed to
wipe the Bradley Wiggins smirk off the face of the Nausea Demon, just in the
nick of time.
No offence, Brad, but it’s just that that particular
smile looks an awful lot better on you…
