General status update:
Hair: Seems to have stopped falling out for the moment. Go figure.
Nausea demon: He’s been getting a bit of a look-in again with the new
antibiotics, so it’s back onto the anti-emetic drugs.
Chemo Muse: Pleased with me for getting my blog post out under fire, as it
were, yesterday. She seemed to be on the verge of actually smiling, but that
may have just been a trick of the light.
Chemo Brian: We spent the morning together, curled up on the sofa together
with Chemo Rat Brian, and he told me tales of life in San Francisco in the days
when people wore flowers in their hair.
Temperature: Was still 38.0 this morning, but has now decreased to 37.5. Excellent.
Sleep, lack of: Last night I slept in the arms of lovely Lorazepam.
Fatigue/weakness: Not helped by this horrible virus. No more brisk walks this
week, then. I knew writing that I’d been for a brisk walk was just asking for
trouble.
Anxiety level (1-10): Considerably lower now that I have been pumped full of IV antibiotics,
and come home with more, so am now in position to ward off all 'opportunistic’
secondary infections up to and including the Bubonic Plague.
State of mind: surprisingly cheerful, considering what’s happened in the last
few days.
Something wonderful happened at the hospital yesterday
– someone listened to me. But more of that later.
Previously
on Chemo Nights: I have a viral infection, my temperature has risen above the
danger point to 38.2 deg C, and the on-call oncologist has summoned me to the
A&E department at Charing Cross Hospital, so that they can run tests to see
if I have become neutropenic…now read on:
I finish yesterday’s blog post and publish it before I
go, as the Chemo Muse points out that I might not be able to do so later, and
then where would we be? Also, it seems like a tiny blow for freedom against my
current chemical prison: OK, Chemo, you
are forcing me to go to the hospital yet again, but I’m going in my own good
time, OK? I do realise how demented this is, given that the personification
of chemo only exists inside my own head, whilst neutropenic sepsis works very
fast indeed, making time of the essence, but I don’t care. It’s all about
clinging on to some tattered remnants of autonomy, like an ancient, mangled
comfort blanket that’s largely been eaten by the dog; there may not be much
left, but you still want to hang on to it, for talismanic reasons.
I’m getting to be an old hand now at the A&E
routine: I hand over the Big Red Book of Chemo – which is the A&E equivalent of one of those ‘I’m with the band’
stickers at rock concerts - to the receptionist, am called swiftly in by
the Triage Nurse, who liaises by phone with my oncological team upstairs as he
takes blood samples from my PICC line, confirms that my temperature has indeed
risen to the danger zone, etc., and then escorts me to a treatment cubicle. I
am thrilled to find that the cubicle contains a nice blue plastic chair, and no
bed. Fine by me, I hate hospital beds, and I’m not planning to stay.
Ten minutes later a devastatingly handsome young
doctor in green surgical scrubs, straight out of ER, comes in and looks at me,
puzzled. According to his badge his name is Omar. I still have my overcoat on
and, as is now customary in these situations, am writing in my notebook.
‘Have they taken
her to x-ray already?’ he asks.
‘Who?’
‘The patient -
Caroline Foster’
‘That’s me.’
‘Oh. Right.’
We rehearse the history of my current distress, and
Omar says they will give me some IV antibiotics. I’ve got a viral infection, I
say, and given that antibiotics don’t work on viruses, why do you do
that?
He explains that as I have a fever, and the onset of
neutropenic sepsis can be so rapid, they cannot afford to wait for the results
of the blood tests before starting to treat me. The fact that I have a viral
infection is neither here nor there: I’m a heavily immuno-suppressed chemo
patient, I have a fever, and they don’t know what might be going on inside my
body in terms of opportunistic secondary infections, so they need to treat me
as if I am already neutropenic. If they wait until the blood tests confirmed
whether or not this is the case, it might be too late.
I find this argument very, very compelling.
After the x-ray I am unable to find my way back to the
treatment cubicle and stand, baffled, looking about me, searching for some clue
as to where I should be heading. Everything is blue, in every direction, and none
of the many blue-curtained cubicles looks more familiar than the others.
Various members of staff ask if they can help me, clearly suspecting that I am
a crazed intruder, and I realise I should not have put my overcoat on again.
When I say I am a chemo patient they all look
pointedly at my non-bald head. Before anyone calls security a woman in surgical
scrubs who says she is ‘the boss’ ushers me to a chair and says she will find
out where I am meant to be. It’s all very, very embarrassing, and I sit there
thinking about migrating birds who can navigate their way over oceans and many
thousands of miles to find their way home to their breeding grounds. But then I
was a trout in a former life, just swimming along with the current, not a bird.
Once back in my treatment cubicle, now containing
a bed, which I resolutely ignore, the entertainment starts. Across the way is a
very old Irish lady, in a wheel chair. She accosts every member of staff who
walks past her – and there are many – and demands, in a loud and piercing
voice, that they wheel her outside for a while; it is not clear why. Various
different dialogues ensue. Some people say they are sorry, they are busy
dealing with patients, and move swiftly on; others say they can’t take her
outside, because she can’t be left out there on her own; others say they will
consult with someone else, and come back.
It’s 4.12 pm: I’ve only been in A & E for about an
hour, and it’s not nearly as bad as last time I was here, with the vomiting. On
the minus side I’m feeling distinctly unwell, but on the plus side I’ve got a
chair to sit in, this time, so I don’t have to sit on the bed, it’s not too
hot, they probably won’t keep me in, and I don’t have any inclination to vomit. It strikes me
that these are all slightly negative pluses, but you have to make the most of
what you’ve got to work with.
A nurse pops in, offers to get me a drink of water,
and wonders if I wouldn’t be more comfortable on the bed. I say that I’m fine,
and prefer to keep off hospital beds as much as possible, as it makes me feel
like a patient. Instead of rolling her eyes at my level of denial the nurse,
whose name is Catherine, beams at me and says ‘You just do whatever helps you
get through this’. I smile back, grateful. Every little helps.
A passing member of staff then makes a major error by
addressing the old lady opposite as ‘Mary’.
‘My name isn’t
Mary, it’s Maria, you feckin’ idiot. WILL YOU TAKE ME OUTSIDE FOR A SMOKE NOW?’
‘I’m sorry, I can’t do
that, because I can’t stay with you’
‘Oh, Jesus Christ! Just take me outside and
leave me there, please!’
Ah, a quick ciggie, that’s what she wants. By this
time I’ve been waiting in the cubicle for another half hour, have heard perhaps
15 members of staff politely declining to take Maria outside, and am rather
tempted to wheel her outside myself, and leave her by the fishpond, where you
frequently see patients in hospital gowns, still attached to IV drips on
stands, puffing furiously away on forbidden cigarettes.
At this point, however, Catherine and another nurse,
Andreia, arrive to set up the drip for the IV antibiotics, which
will take about an hour to go into my system. To my delight, both nurses turn
out to be fellow swimmers. We have a pleasant chat about pools and distances, and
swimming in the sea, while Andreia flushes my PICC line and changes its
dressing, all the while instructing her colleague in the importance of keeping
everything absolutely sterile, and how to achieve that; she is a very good
teacher.
After the nurses leave me with the drip, something
quite extraordinary happens: my Fairy Godmother walks in.
She takes the unassuming form of a woman called
Rachel, who says that she is an Acute Oncology Clinical Nurse Specialist, and
she has just popped down to see how things are going. I end up telling her a
lot, particularly about the problem of not having a particular person to call
when problems arise related to the chemo, and how very distressed this has made
me on several different occasions now.
‘Don’t you have a Key Worker?’ she asks.
I explain that previously I had Vanessa, my Breast
Care Nurse, but that once chemo started the Breast Care Nurses seemed to be off
limits: indeed, there is a message on the Breast Care Nurses’ answering machine
specifically instructing you to call the Chemo Day Ward with any problems
relating to chemo. I add that today I had called the Chemo Day Ward several
times without getting an answer, so had ended up once again calling the Chemo
Emergency Help Line, which was meant for out of hours calls.
Rachel mentions how busy the chemo nurses are, and I
know this from personal observation: administering chemotherapy is highly
labour-intensive, and they rarely get a moment’s break. I can see that there
isn’t a lot of time to take calls. Rachel adds that she has heard similar
stories to mine from a number of other people, and it does seem that there is
a gap in the system as far as chemo patients are concerned; she thinks that her
boss would be very interested to hear my views - would I be willing to talk to
her? Astonished, I say that I would be
very happy indeed to do just that.
Then Rachel does something even more wonderful. On
hearing that the ‘toxic swamp stomach’ side effect of chemo has become even
worse than the nausea, this cycle, she tells me that it is not a side effect of the chemo, it is a side effect of the
steroids, the Dexamethasone, which can be a serious stomach irritant. I am
astonished all over again, and when she tells me to ask the doctor for a drug
called Omeprazole, which should protect me against the problem, I practically
start weeping with joy.
How have I managed to go for 3 whole cycles of chemo
without finding out this vital piece of information? I vaguely remember reading
that ‘indigestion’ can be a problem, but since what has been happening to my
stomach has been so hugely toxic, I thought it must be the chemo which, as we
all remember, is an intravenous chemical weapon. Indigestion doesn’t really
come anywhere near it. I have only found out that this is a problem which can
actually be solved because someone who knows about the subject has taken the
time to listen to me.
Before she leaves, Rachel gives me one of her cards,
saying that she will only be working at Charing Cross for another 8 weeks, but
I am welcome to call her at any time. At this point I am ready to prostrate
myself before her in gratitude, but can’t, as I’m attached to a drip.
After she goes I muse on this extraordinary turn of
events: I have been blundering through chemo for the last 58 days like a lost sheep,
not knowing where to turn when things went wrong, and getting increasingly
distressed at my inability to find – well, someone who cared. This is not a criticism of the doctors and
nurses at Charing Cross; it is a criticism of a system which does not give chemo
patients - or is it just chemo patients with breast cancer? - a specific person to call if they have a problem between chemo sessions.
Chemotherapy is a gruelling, exhausting and deeply
unpleasant treatment which lasts for months, involving all sorts of side
effects, including the side effects of the drugs they give you to deal with the
side effects: it is a baffling labyrinth in which you really need a guide,
someone who has the time to listen to you, and advise you on how you can find
relief. But for some reason which is not
immediately apparent, chemo patients do not have a ‘key worker’ to call. Maybe this because we are meant to be under the care of our GPs when we're not in the hospital, but your GP is hardly a 'key worker' - last time I tried to get an urgent phone appointment with my GP, I was offered one in 3 days' time, despite having told the receptionist I was a chemo patient with vomiting problems. I gave up, called the Chemo Emergency Help Line, and ended up in A&E, anyway.
It took Rachel one minute to give me the answer to a
problem which has been bothering me for two months, and I only met her because
I was in A&E with fever, and possible neutropenia. I’m going to be talking
to Rachel’s boss about this problem, and welcome the opportunity; it might just
help to change things. I hope so – my first three cycles of FEC have been quite
problematic, and there are another 3 cycles, another 60 days or so to go.
This post is much too long
and my midnight deadline approaches: suffice to say that my bloods and X-ray were
OK, and they let me go home after treatment, with yet more antibiotics to take
for the next week to ward off those pesky opportunistic secondary infections. Many
thanks to everyone in Charing Cross A&E department, and the oncology team, all
of whom displayed their usual impressive efficiency. And especial thanks to
Catherine, Andreia and Rachel.
