General status update
Hair: Not at all happy about wearing R’s Smurf snow hat (see below)
– wants the snood. Also v. worried after nurse informed me Hair will probably
start thinning quite a lot soon. Sobbing Hair in Smurf hat – not a good combo.
Nausea demon
and Chemo Muse: currently engaged in
vicious hand to hand combat on rug in front of sofa, fighting over who is going
to control me over next few days. Depending on the outcome, today could either
a) be v. productive or b) involve steroid-fuelled long-distance projectile vomiting.
Chemo is never boring.
Chemo Brian: In his usual place on sofa, gazing about him with the air of a
bewildered bison, and saying ‘this is HEAVY stuff, dudes – what the f*** are
you guys fighting about?’.
Fatigue/weakness: Cancelled by steroids until further notice.
Sleep, lack of: I’m feeling very perky, mentally, because of the Dexamethasone
– which is fab for now, but may be less so if perkiness continues until 3.30
am, as in the 2 previous chemo cycles.
Anxiety level (1-10): WAY too much going on for anxiety today. Deeply relieved that FEC 3
finally got delivered yesterday, though.
State of mind: The inside of my head feels as if it’s suffered a home
invasion by a squad of belligerent ferrets. ‘Mind’ no longer really covers it.
All the dire warnings I have received about FEC 3 invest
it with a significance similar to that
of the Ides of March for Julius Caesar, which may well have something to do
with why I find myself weeping as R and I make the Walk of Doom down the Fulham
Palace Road again towards the hospital and my 10.30 am appointment for the
third dose of chemo.
R, alarmed, asks me what the matter is.
‘Nothing, I’m fine’ is clearly not an acceptable
answer in the circs, but sometimes it’s quite hard to put into words why are
you are crying; determining the aetiology of uncontrollable wellings-up of
emotion is not necessarily easy, or even possible, as I am quite certain that
Aristotle would agree, so I go with:
‘Sorry. Just everything, really. Sometimes it all just
gets too much. I’ll be fine. We’re nearly half-way through now’.
When the nurse comes to take me into the chemo ward R
is temporarily absent, getting coffee, so she finds me sitting there alone with
tears still streaming down my face; she too, is alarmed.
‘What’s the matter? Did the doctor say something to
you?’
She clearly thinks that I have just been informed by
my oncologist that they have found metastases in my liver, bones and brain, and
I hasten to assure her that this is not the case.
‘No, nothing like that. Sorry, it’s just all got a bit
on top of me this morning.’
My self-appointed ranking as the 23rd
hardest woman in the Charing Cross Hospital Chemo Day Ward is looking to be in
danger. Got to get a grip, before they decide to send me off for psychological
evaluation or, even worse, call in the Chaplain.
The nurse, whose name is Alice, and who will go on to
show me consistent patience and kindness throughout what will be a very long
and trying day for her, too, doesn’t look convinced, but ushers me into the
ward and gets me settled in my Big Pink Chair of Chemo. The usual lengthy list
of pre-chemo rituals commences. The Cold Cap machine is plugged in to get the
cap to a suitably Arctic temperature; the long list of drugs I am to be infused
with is gathered together, checked and re-checked.
My head is anointed with conditioner, and I find out
for the first time why they do this: it’s to stop your hair being frozen into
the ice which forms inside the Cold Cap while you are wearing it. If your hair wasn’t
covered in gloop, then it would be ripped off, frozen inside the ice, when they
remove the Cold Cap several hours later.
The Cold Cap goes on, and the pain is intense. I begin
to recite Byron’s ‘The Destruction of
Sennacherib’ to myself as a distraction, something I often do in similarly
distressing circumstances at the dentist. Learning all that poetry by heart had
to come in useful sometime…
The Assyrian
came down like the wolf on the fold,
And his
cohorts were gleaming in purple and gold;
And the
sheen of their spears was like stars on the sea,
When the
blue wave rolls nightly on deep Galilee.
Oh, Holy F***, this hurts.
It hurts, it hurts, IT HURTS no don’t think about that, concentrate on the
poem, keep going.
Like the leaves of the forest when summer is
green,
That host
with their banners at sunset were seen:
Like the
leaves of the forest when Autumn hath blown,
That host on
the morrow lay withered and strown.
Strown, George, strown?
REALLY?
For the
Angel of Death spread his wings on the blast,
And breathed
in the face of the foe as he passed;
And the eyes
of the sleepers waxed deadly and chill,
And their
hearts but once heaved, and for ever grew still!
And the Angel of S***ing
Death can just B***ER right off…
And there lay
the steed with his nostril all wide,
But through
it there rolled not the breath of his pride;
And the foam
of his gasping lay white on the turf,
And cold as
the spray of the rock-beating surf.
Poor horse, I know JUST
how you feel… why is R looking at me like that?
And there lay the rider distorted and pale,
With the dew
on his brow, and the rust on his mail:
And the
tents were all silent, the banners alone,
The lances uplifted,
the trumpet unblown.
Ah, this is the first time
R has actually witnessed this part of the proceedings ‘Don’t worry, I’m FINE.
Really. It’s a piece of cake. ’
And the widows of Ashur are loud in their
wail,
And the
idols are broke in the temple of Baal;
And the
might of the Gentile, unsmote by the sword,
Hath melted
like snow in the glance of the Lord!
By the end of the poem my head is freezing and
numbing, and the sensation of pain from the cold is moderating from level 1 – 40 mph Katabatic Antarctic Wind as found at
Cape Dennison in the eastern Antarctic
- to level 2 - no colder than what
you might experience on a brisk walk round the Marine Drive on the edge of the
North Sea at Scarborough, north Yorkshire, on a freezing January day, if you
have been so foolish as not to don any headwear – and I am able to continue
without issuing further squeaks of anguish.
Meanwhile, the chemo nurse is coming up against a bit
of a problem: before administering the chemo drugs, she has to check that my
PICC line - the tiny, narrow, permanent
(for now) catheter running up inside a vein in my arm and round into a much
bigger vein near my heart - is clear and unblocked.
This she does by
a) injecting it with saline solution, to flush it – no
problem.
b) drawing some blood from it – BIG problem. Nothing
comes out.
Alice flushes the PICC line with saline solution again
– fine. She tries to draw blood again. Nothing. She tells me that sometimes
there can be a problem with a PICC line because of the position of the arm, and
that they have various techniques to deal with it. First, lying me down.
The Big Pink Chemo Chair is put into a reclining
position, and my arm is made as relaxed as it can be. I am told to take deep
breaths and hold them in. No go. Vertical once more, I am instructed to wave my arm
round a little, and rotate my shoulder - still nothing – and then to stand up
and do the same thing, only more vigorously. All this pink-helmeted activity is
brightening the morning of the other temporary residents of the chemo ward, I
am glad to see.
Alice sighs, ponders her next move, and then says:
‘I’m going to put some Heparin in - it’s like Mr
Muscle for blockages’
Heparin is a blood anti-coagulant, the name of which for
some reason I associate vaguely with rats.
‘Ooh,' says R ‘Cillit BANG!’
‘Exactly’ says Alice.
The Heparin doesn’t work either. Poor Alice has by now
been through half a dozen pairs of surgical gloves and about half a gallon of
saline solution, and is beginning to look a little distrait. She summons help
from a senior nurse, who says we need more of the Heparin vein-drain-cleaner,
and that it should be left to work for 20 minutes this time before she tries to
flush it again. Of course, that's what
it says on the Mr Muscle bottles, too.
Time is moving on. We have been here for nearly 2
hours, and are nowhere near the chemo. Alice gives me the second dose of
Heparin, and says she will return in 20 minutes. My head is still freezing inside the pink helmet,
obvs.
When she returns, there is still no joy from the PICC
line, and we have got to the stage where doctors have to become involved; the
nurse explains that there is a possibility that the end of the PICC line may
have become dislodged from the vein deep inside me, and that they need the
doctor to authorise an x-ray. They can’t inject the chemo if they’re not sure
the PICC line is in place and working properly – it’s too dangerous.
So then there is bleeping of doctors and waiting and a
series of telephone calls explaining the situation. I don’t like the bit where I overhear the
senior nurse telling someone that it is scary – twice. First it seems that Stan
the Oncologist will come and sort it, then that is overruled by another doctor
who says that they will request an urgent chest x-ray, so I should go down to
the imaging department on the first floor. It’s not clear what will happen if
they find that there is something amiss deep down inside, and I choose not to
enquire, in the hope that I will never need to know.
Going to get an x-ray requires the removal of the Cold
Cap and defrosting my now deeply-frozen head. Pffft. Still, the nurse leaves
the machine on, so my head can be rapidly refrozen when I get back. This is
also the point at which I discover I have forgotten to bring my snood, so I
borrow R’s black pointy snow hat, which makes him look like a 6 foot plus
Viking Smurf, and has been the cause of much amusement.
Just refresh
your memory, this is what a Smurf looks like. Did you know that The Smurfs are
Belgian, and that in the original French their name is Les Schtroumpfs?
Now it’s my turn to wear the Smurf hat, and I look like a 5’ 3 1/2” woman
who has inexplicably failed to look in the mirror before she left the house.
By the time I am finally sent down for the x-ray it is
2.08pm and I have been at the chemo ward for 3 ½ hours, and am starting to feel
very, very tired. Down in the imaging department, we are delighted to find that
my x-ray request is already on their computer system, and it all happens very
fast, the only delay being caused by my lengthy struggle to fasten up the ‘Dignity
Gown’, into which you have to change for an x-ray. I can’t blame Chemo Brian for this,
because the same thing happens every time I have to don one of these challenging
garments.
Why do hospital gowns have to be so extraordinarily
complicated to do up that they require a 6-part set of photographic
instructions on the wall of the changing cubicle, detailing the exact sequence
in which you must fasten all the different–coloured dangling ribbons, in order
to preserve your dignity?
I have done this a number of times now, and on each
occasion become flustered and distressed at my inability to do it right. And,
of course, deeply convinced that it is simply my own ineptitude – off the cuff
analysis of Kant’s Groundwork for the Metaphysics of Morals? No problem. Tie up
series of little coloured ribbons in the correct order? Complete mental meltdown.
Furthermore, however tight I tie the wretched ties,
the gown still gapes open at the front, exposing my breasts, as soon as I move.
Excellent. It strikes me that there is a fundamental design flaw here,
either in the upper half of my body, or in the Dignity Gown itself. Clutching
the 2 halves of the gown across my bosoms, I open the cubicle door and sit
waiting to be collected, as instructed. I am mildly cheered by the sight of a hefty,
pony-tailed middle-aged man walking past, in what seems to be only a Dignity
Gown accessorised with a pair of biker boots. At least I got to keep my jeans
on.
I sit and wait, and nothing happens for quite a while;
the urgency seems to have evaporated. I am hungry; I never got to eat my
sandwich, and breakfast was more than 6 hours ago. At this point I have a quite
overwhelming desire just to slip my clothes quietly back on, pick up my bag,
and walk out of the hospital, but even I can see that this is not a sensible
plan; my PICC line must be sorted out and the FEC3 administered and, if not
now, when?
A woman comes to collect me; I walk after her back
through the waiting room, still in my Smurf hat, clutching my belongings in the
plastic carrier bag provided and completely forgetting to hold the front of the
gown together, thus affording everyone in the waiting room a rather more extensive
view of my frontal elevation than they would probably have preferred.
Some moments you just want to forget, really.
I would hereby like to make a public appeal for public-spirited persons with both
engineering and garment design genius – perhaps a team comprising Dame Vivienne
Westwood and Sir James Dyson – to come forward and do hospital patients
everywhere a favour, and redesign the Dignity Gown. It would be a great service
to humanity. And if it has to incorporate a crinoline, no problem.
The x-rays pass off without incident; by 2.45 we are
back in the chemo ward, and the nurse is phoning the doctor. The x-ray is now
on the system, so perhaps he can save time by looking at it wherever he is, and
not coming down to the chemo ward. It is at this point we discover that someone has
switched off the Cold Cap machine while I was downstairs, so we will have to
wait for it to freeze up again before my head can be refrozen, too.
Meanwhile, the oncology SHO calls to say he has looked
at the x-ray, and the tip of the PICC line is still in my vein, so the nurse
can go ahead and administer the chemo. Hooray! The nurse adds that the doctor has to come down to the
chemo ward anyway, to sign a piece of paper to say that it is safe to go ahead
with the chemo.
‘Is that so if it kills me, then everybody knows that
it’s the doctor’s fault, not yours?’
‘Exactly. Although it would still kind of be my fault
because I put it in you.’
Finally, the nurse hooks up the PICC line to the chemo
machine, with a big bag of saline in it. It is 2.52, and I have been in the
hospital for 4 ½ hours, during which time I have had so much salt water pumped
into my bloodstream that I could probably now be used to pickle gherkins.
Then we discover the Cold Cap machine is
malfunctioning: its High Temperature Alarm keeps flashing. R points this out to
the nurse, who has also not had her lunch yet, and is looking pretty tired as
well; I only have to sit and wait – she is the one who has to sort all the
problems out. The machine is turned off and then on again, the tubes
are removed and reattached, and finally it starts to freeze properly.
As we are all silently wondering whether there is
ANYTHING ELSE that can possibly go wrong, I drop my mobile phone on to the
tiled floor, and its back falls off. R is becoming a little agitated now,
because this evening he is due to give a rather grand public lecture – the
Locke Lecture - to the Worshipful Society of Apothecaries, one of the City of
London livery companies, dating back to the 12th century; it founded
the Chelsea Physic Garden, former members include John Keats and Elizabeth
Garrett Anderson, and its members are mostly doctors.
Such a lecture is a completely immoveable feast, and
had all gone well today I would have been back home well before R had to leave
for the Apothecaries’ Hall over in Blackfriars. Now he is faced with leaving me
mid-chemo, and he’s quite upset about that. I’m not too worried though, as I’m
getting a bit sleepy, and tell him that I can have a bit of a nap while the
chemo is going in, and then it’s only a short walk home.
At 3.18, nearly 5 hours in, Alice puts the Cold Cap on
my head again, and back comes the pain. Having your head frozen twice in one
day is not an experience I would recommend to anybody. But after that, it all
starts to go smoothly. While the Cold Cap freezes, they pump in the FosApprepitant
and Ondansetron anti-emetic drugs, then the Dexamethasone steroids. While this is happening, Alice sorts out the many, many bags of the 3 chemo drugs, all in their
bright yellow HAZCHEM plastic envelopes. With the senior nurse she goes through
the ritual chanting and checking of drugs, batch numbers and expiry dates; the
administration of chemo is a process in which one small mistake could do a
great deal of damage.
At 3.48, the first chemo drug, the alarmingly bright
red Epirubicin, starts flowing down the plastic tube from the chemo machine,
into my PICC line, up my arm, into my chest, down into the vein near my heart
and thence into my bloodstream. R and I are both deeply, deeply relieved.
The only fear worse than
the fear of having your chemo is the fear of NOT having your chemo, and being
forced to come back and do it all over again on another day. This happened to a
friend of mine the other week at another hospital: she was in the chemo ward,
all wired up, had received the anti-emetics and steroids, and was expecting the
chemo to start at any moment, when a nurse came over and said that they had
just looked at her blood tests, and her platelet levels were too low for her to
withstand chemo. She would have to go
home, and take more medication to strengthen her immune system. Her chemo would
be delayed for a week. They had had a 2 hour wait before being admitted to the ward
and her husband had taken the afternoon off as unpaid leave to be with her. The
blood test had been taken 2 days previously.
After that, everything else goes without further hitches.
R leaves reluctantly for the Apothecaries’ Hall at the last possible minute, with many admonitions to text him
immediately if I need him to come
home straight after the lecture – he will skip the feasting bit afterwards if
necessary. I tell him this will NOT be required, and to go knock ‘em dead and then feast to his heart's content: boy, does he deserve it.
Then I settle down in the quiet of the chemo ward –
most of the other patients are long gone – and read ‘Phineas Finn’ on my Kindle,
the only sound the regular clicks and gurgles from the chemo machine beside me,
the only movement my finger touching the screen in front of me to turn the
pages. I am soon lost in the world of Victorian politics and love-affairs: it’s
so long since I first read Trollope’s Palliser novels that I have forgotten many
of the plot details, including which of Phineas’ many amours he finally settles
down with - he seems to find it remarkably, even unflatteringly, easy to
transfer his affections. Still, it is engrossing, and very soothing. They tell
you not to eat things you like during chemo, because it acts as aversion
therapy, and afterwards you will never want to eat them again; I hope this doesn’t
apply to books, too.
After the chemo finishes, I have to keep the Cold Cap
on for another 45 minutes, and I finally fall asleep; Alice has to wake me to
remove the bright pink helmet. By this
time I am the last patient left in the chemo ward, and they are tidying up for
the night. Before I leave I thank Alice for her patience and kindness during the day – the seemingly intractable problems with the
PICC line were clearly very trying for her, despite which she maintained an
unflappable cheeriness of demeanour throughout - and say what an enormous
difference it makes, when you have to come to the hospital as often I do, and
feel so vulnerable and powerless, if the staff who treat you are kind, and
listen to you. She says ‘tsk, tsk’ and that that is what she is there for, but
we both know that not all medical staff exhibit quite the same approach.
At just before 6pm, after 7 ½ hours in the chemo ward,
I am free to go and, once again wearing the Smurf hat, set off for home up the
Fulham Palace Road.
