There was an
overwhelming sense of déjà vu as R and I sat waiting in the breast clinic on
Saturday morning, surrounded by other anxious women, none of them smiling.
The
breast clinic is the place where nobody ever smiles.
I remembered the sheer choking terror of my first visit there, just over
a year ago, the surgeon who didn’t condescend to introduce himself to me, the
two hours I spent lying on a bed on my side with my arms above my head having endless ultrasound and two biopsies, how they knew I had cancer but I was too dazed
to ask, and so they didn’t tell me until the following week, when we came back for
the pathology results…
Ah, happy days.
This time it was all
rather different, however: a pleasant female surgeon, only a couple of minutes’
wait before going for the ultrasound, and a huge sense of relief as the doctor
stared at the ultrasound screen and immediately said ‘It looks like scar tissue
to me’.
They did a biopsy,
nevertheless, as you can’t be 100% certain of a negative result from the
ultrasound and, as the surgeon said, ‘Sometimes there are surprises’.
I will go back to get
the results on Friday.
In the meantime, I’m
holding my breath and keeping my fingers firmly crossed.
I’ve only just got my
life back, and I’m praying it’s not going to be taken away again.
I’ve spent Christmas trying not to think about
whether I’m going to die soon, and have been quite successful, on the whole.
Just over a year ago, I was diagnosed with invasive breast cancer, since when I
have undergone a lumpectomy, 5 months of chemotherapy, 3 weeks of daily
radiotherapy, and am now taking the anti-oestrogen drug Tamoxifen every day. My
body – and mind - have taken quite a battering, but the cancer has been attacked
with all the current state of the art oncological weaponry: I have been
mutilated, poisoned and burned, and now the ‘wonder drug’ Tamoxifen is playing
havoc with my hormones. The cancer should have been beaten into submission, and
my prognosis is excellent, but…
Two weeks ago I found another lump in my
theoretically now cancer-free breast: a small, hard, irregularly-shaped lump
very close to the scar where they removed the sentinel lymph node near my
armpit during the surgery. Blue dye is injected into your breast beforehand,
and the first lymph node in which the dye appears is called the sentinel lymph node. If the
cancer has spread beyond the breast this is where it will go first – so they cut
it out, and check. My sentinel lymph node contained a tiny clump of cancer
cells – what they call a micro-metastasis – which is why I had to have systemic
chemotherapy treatment as well as local radiotherapy on the affected breast:
the cancer had just begun to spread beyond my breast into the lymph nodes.
It’s hard to describe what happened in my brain in
the seconds after my fingertips found the new lump; something like a car engine
flooding, I imagine.
I had always thought that if the cancer came back,
it would be by metastasising to my bones or my brain, which are generally the
places where breast cancer likes to go next once it has escaped from the
confines of the breast; it never for a moment occurred to me that it might
return in the same breast, what they call a ‘local recurrence’. My big fear was
of ‘circulating tumour cells’ managing to escape into my blood stream, dodge
the chemo, and then swim off to colonise pastures new.
Lumps were no longer on
the agenda, until two weeks ago.
Once I stopped panicking, I emailed the news about
the new lump to my Breast Cancer Care Nurse, Vanessa, saying that although I
knew it was probably just scar tissue, I was a little alarmed, and asking what
she advised. She emailed straight back saying that of course it was probably scar tissue, but that the lump should be
investigated; she had booked me an appointment at the Breast Clinic for
Saturday 28th December. I would see a surgeon and, if necessary,
have a mammogram, ultrasound and biopsy.
Again.
Naturally, I googled.
It is overwhelmingly likely that the lump is either just scar tissue that I simply
hadn’t noticed before, as I have left the sentinel node scar alone, for the
most part, or the charmingly titled ‘fat necrosis’, i.e. a random little lump
of fat. It's too hard to be a cyst, I think. Sometimes, however, new tumours do
appear near scar tissue, and that lymph node did have some cancer cells in it.
The consequences, should it turn out to be a recurrence of the cancer, don’t
really bear thinking about: probably a mastectomy, a complete lymph node
clearance with attendant risk of lymphoedema and loss of arm movement, and last
but not least more chemotherapy.
I repeat, MORE CHEMOTHERAPY.
Imagine that.
I can’t imagine more chemotherapy, actually. The
horror of the FEC chemotherapy remains with me still, and whenever I see that
photograph of me in the pink helmet, or even just think about it, I shudder, my stomach contracts and I want to
vomit. My mind just can’t encompass the idea of more chemotherapy, but the terrible
thing is that if this is a recurrence,
it would still count as being part of the same early stage cancer, and the
prognosis would be good – so long as I had the treatment. Again.
It would be stupid not to, right?
But after a year of feeling like a tortured lab rat,
it’s almost impossible to contemplate the idea of going through all that again, including being properly
mutilated this time.
You may be wondering what all this has got to do
with Jennifer Saunders. A couple of months ago, in an interview with The Times
to publicise her autobiography, Saunders took it upon herself to criticise
fellow breast cancer sufferers for saying that you can never put the disease
completely behind you. These women liked
the attention they got from having breast cancer, she said, wore the disease ‘like
a badge’, and were probably sorry when their hair grew back; she herself always
got lots of attention because of her career, and did not feel the need to hang
on to her breast cancer as a way of getting attention. The doctors had told her
she was not going to die of it, and she believed them; she had no more chance
of getting breast cancer again than the average person.
Well, good luck with that, Jennifer.
Perhaps you have superhuman mental self-discipline,
and never think about what might happen if the disease comes back, as it all
too frequently does; cancer treatment is still not very effective. My
chemotherapy treatment theoretically increased my chances of survival by about
six per cent, but they still can’t distinguish in advance who will be helped by
chemo and who won’t; similarly, Tamoxifen theoretically increases my survival
chances by 8 or 9%, but there are some people who can’t metabolise Tamoxifen.
Again, there is no way of telling if it is actually working.
My cancer is not’ cured’, and the chance of it
coming back is very real. The treatments may have mopped up all the cancer
cells, or they may not; you can never know, unless and until the cancer comes
back. That’s why you are never free of breast cancer, Jennifer, and if you
think you are, then you’re living in a fool’s paradise.
You don’t think about it all the time, though: just
as all humans, even healthy ones, know they’re going to die sometime, but get
through life by not thinking about it. During the last couple of months I was
getting on with my life again, treatment over, and hardly thought about cancer
at all, until two weeks ago.
Tomorrow I will find out if I have anything to worry
about – or rather, anything out of the ordinary to worry about. If the surgeon deems there is something to worry
about, and they give me a biopsy, then the results will take another ten days.
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….
Radiotherapy, day 39 – come back chemo, all is forgiven!
Lungs: looking
likely to get me before the cancer does, right now.
Radiation burns: slowly starting to heal after two weeks of hell.
Nausea demon:
Oh god, I miss him – I miss him SO much. Nausea schmausea: at least he didn’t
burn me or make me cough uncontrollably for days on end. And he was very
sweet-natured, really.
Anxiety level/insane euphoria (+/- 1-10,000):someone
give me some more Dexys – PLEASE. Even if it does turn me into an American
football player – I DON’T CARE. Prednisone is good for my lungs but it DOESN’T
MAKE ME HAPPY.
Despair Demon: he’s
been trying to make our liaison permanent. Fighting him off as best as I can in
my severely weakened physical and psychological condition.
Chemo Muse:
telling me firmly that the only way now is UP – through reapplication to writing,
since swimming is off the agenda until the burns have all healed and my lungs have recovered.
Chemo Brian: looking
rather anxious, frankly.
State of mind:
calm, resigned to my fate. Ready for whatever comes next. Hopefully just
breakfast, but this IS the darkest hour before the dawn.
It’s 4am, and the Grim Reaper is sitting on the sofa with
Chemo Brian, drinking the last of R’s Laphroaig. Sorry, R.
I’m lying here listening to the increasingly alarming noises
in my lungs – always my weakest point,
cancer treatments always get you at your weakest point – and contemplating
the Three Last Things which, in my case, are likely to be a glass of Armagnac,
a can of ice cold diet Coke, and a packet of Maltesers.
It’s been a bugger of a week, beginning with the continuing
torment of the radiation burns, which has been so bad that at first I didn’t
really notice the coughing.
Until I was coughing so much, that is, that I was choking and
we had to go the A & E, where I was admitted and put on a nebuliser to pump
steroids into my lungs. That was Friday morning, and I spent the day in
hospital being treated before being released back into the wild clutching a big
party bag of more steroids. The oncologists are divided as to whether this is a
condition caused by the radiotherapy - radiation
pneumonitis – or simply an asthma exacerbation in my generally weakened,
immune-suppressed state, but it doesn’t really matter what the cause is, as the
treatment is the same in either case: my lungs are severely inflamed and require massive doses of steroids to try and calm it all down before my airways close up entirely and I cough
myself to death.
Literally. The other danger is if it wakes up some dormant bacteria and develops into pneumonia.
I spent the whole of Friday night awake and still coughing, so the
treatment didn’t seem to be working, but during the course of Saturday the
coughing became slightly less incessant. Now, though, at 4.30 am on Sunday
morning, my lungs seem to be talking amongst themselves, and they are NOT
HAPPY. I’m not coughing quite so much, but from inside my chest are coming
crackling, hissing, wheezing sounds, the like of which I haven’t heard since I was
in hospital in Ankara with pneumonia five years ago, an episode which nearly
killed me.
Pneumonia is the patient’s friend, you know – it’s not an
unpleasant way to go. And five years ago I was quite ready to go gently into that
good night, having been on my own for a very, very long time after the death of
my former husband (from a chemo-related lung infection – spooky, huh?). At that
point I was very tired, quite loosely tethered to the world, and perfectly
prepared to give up without a fight, but the Grim Reaper had an appointment in Samara with someone else that night, and passed me by.
It’s different now, of course: there is R, who surrounds me with love,
and I have so much to live for.
I suppose I’d better make a bit of an effort.
ps: remember, my current condition is NOT caused by the cancer - it's caused by the frigging treatment.
Radiation burn: getting
worse before it gets better.
Nausea demon:
he brought me a bunch of tulips the other day – he doesn’t like seeing me
suffering like this. We talked nostalgically of all those dawn breakfasts together
during chemo, when I was at least able to sit up.
Radiation demon: this
is light duty for him, as he’s only torturing one breast rather than the whole
body, so he’s got plenty of time to do Sudoku as well.
Anxiety level/insane euphoria (+/- 1-10,000):I
would give anything for a few Dexys
and a big surge of unnatural chemical exuberance right now, but unfortunately
they don’t prescribe steroids for radiation burns.
Despair Demon: has
set up camp in the airing cupboard once again, and keeps reminding me that this
is my punishment for regarding radiotherapy as a mere formality after chemo. I
wish he’d just sod off back to the Infernal Regions and leave
me alone.
Chemo Muse:
itching to get back to her new role as my swimming coach, and currently filling
in the time by reading Ian Thorpe’s autobiography. She says I’m never going to
be a champion swimmer because my feet just aren’t big enough.
Chemo Brian: very
understanding about me spending so much time lying on the bed at the moment, rather
than joining him in my usual position on the sofa.
State of mind:
low – have to keep reminding myself that all this unpleasantness derives from
the treatment, not the illness, and that soon it will be over. And then I can
start taking the frigging Tamoxifen.
Legend relates that St. Lawrence, depicted above in a
painting which may or may not be by Caravaggio, was martyred by being tied on
top of an iron grill over a slow fire that roasted his flesh little by little.
I’m beginning to know exactly
how he felt.
Since the final dose of radiation, a week ago, I have continued
to burn, and the pain and discomfort on, under and around my breast has
increased. It is red and raw and acutely painful, and as the layers of skin burn
off I feel as if I am being very slowly flayed alive.
This is a situation in
which having a D cup breast is a distinct disadvantage, since the weight of the
breast exacerbates the problem. The only way I can be comfortable is to lie down,
breast bared, back slightly arched, with my arm extended above and behind my
head on the bed at full stretch.
This improves things a great deal, and is said to be the best
way to help the breast to heal, but it considerably limits my range of other
activities. Aloe vera gel helps to cool and soothe it, but the breast will
continue to burn for another week, apparently, as the radiation continues to work
for two weeks after the treatment has finished. Only then will it begin to heal,
and there is nothing else that can be done, so for now I must simply be patient
and lie on the bed in the backstroke position, the swimming pool once again a
distant dream.
Fatigue/weakness: considerable, but different
to chemo fatigue in a way I can’t quite describe.
.Anxiety
level/insane euphoria (+/- 1-10,000):ratcheting
up again, becauseafter the
radiotherapy comes Tamoxifen, the wonder drug with accompanying wondrous side
effects. Allegedly.
Despair Demon: has
made a sudden reappearance as I approach the end of radiotherapy treatment,
mystifyingly.
Chemo Muse:
she’s very happy that I’ve started writing again
Chemo Brian: he
politely averts his eyes when I lie on the sofa topless to let the air soothe
my irradiated breast
Nausea demon:
having a whale of a time working for the Russian oligarch’s wife in
Knightsbridge, but still comes round for a cup of tea from time to time. Says
he is there if I need him once I start taking the Tamoxifen. He sends his love
to you all.
State of mind:
weary, very weary
I wake up this morning weeping, in pain because my nightie
has adhered to the radiotherapy burns under my breast; pulling it off hurts
like … well, you can imagine. I continue weeping at the hospital, while I am
being nuked for the last time, then at the café where I go afterwards to have a
cup of coffee and regroup, and then at the bank.
After that I give up and go home.
Yes, we’re back to the old routine: early morning
unpleasantness and existential despair. My post-chemo trip to the Aegean was
lovely, thank you, but it now seems a very long time ago. The morning after I
got back from Ayvalik – Tuesday 21st May - I was straight back to
the hospital to start my radiotherapy treatment, consisting of 15 daily doses over
3 weeks.
The expression always used about radiotherapy is that after
chemo it is ‘a walk in the park’, and that is broadly true: nothing can compare
to the up-front, in your face horror of chemo. Radiotherapy, however, is nasty
in its own way, and that nastiness sneaks up on you all of a sudden after the radiation
has been working away quietly in your body for a couple of weeks: it’s what can
very accurately be described as a slow burn.
The treatment itself is not at all unpleasant: before it
starts there is a ‘radiotherapy planning meeting’, during which they put you in
a big scanner, take lots of measurements to ensure you will be nuked in
precisely the right spot, and put a couple of tiny, permanent tattoos on the
breast. Then when you come for treatment every day the tattoos help them guide
you into the right position under the radiotherapy machine. The radiation
itself is entirely painless and lasts for only a few minutes: most of the time
at each appointment is spent lying on the table whilst the radiologists make minute
adjustments to your position: the whole process is reassuringly precise down to
the last millimetre.
In case you’re wondering why I have to
have radiotherapy after I’ve already had chemo, it is because the two treatments
target different things: the chemo is a systemic treatment, to mop up any stray
circulating tumour cells which might have escaped into my bloodstream, while
the radiotherapy is a local treatment just on my right breast, to kill any
cancer cells that might remain elsewhere in the breast tissue after the surgery
to remove the tumour. You can’t have a lumpectomy and keep your breast without
having radiotherapy: otherwise there would be a very high risk of the cancer recurring
within the breast.
The main side effects of radiotherapy are what medics call ‘skin
reaction’ and I call ‘burning’, and fatigue, both of which develop gradually as
the radiation builds up in your system. The side effects peak two weeks after the last dose of radiation: you
keep on cooking inside for some time after the treatment has finished.
I start to burn on day 10.
That evening, giving my breast its daily inspection in the
bathroom mirror, I notice that the skin is turning red on its underside, close
to the crease where the breast meets the rib-cage. I have been applying aloe vera gel several
times a day to protect the skin, on the advice of a friend who had recently
done so and managed to get through her radiotherapy without burning, and am hoping
for a similar result. I have also been spending a lot of time lying around topless,
as air on the irradiated skin is meant to help. Over the next few days,
however, the skin becomes redder and begins to feel very sore.
By Friday, day 13, it is quite painful and seems to be
starting to blister, and I want a professional to take a look at it. My cyber cancer buddies at other hospitals have
been given assistance once their skin broke down, so I ask to see the
radiotherapy nurse, who takes a look at my breast and then, essentially, tells
me to stop wasting her time.
‘There is no MAGIC CREAM’ she says, with a certain amount of
scorn in her voice, the words ‘you idiot’ hanging unspoken in the air. ‘Just
keep on doing what you’re doing, and see how it is after the weekend.’
During the weekend the fatigue starts to set in as well, not
helped by being unable to sleep very well because of the pain from the burn,
and the difficulty of finding a comfortable position to lie in. Emotionally, I start
to fray at the edges: three weeks of going to the hospital every day for
treatment has taken its toll, and I can’t get very excited about my treatment
finishing on Tuesday, because I know the radiation goes on working after the
treatment is finished and that the burning may get worse: I imagine my breast turning
into a horrible festering mass as I continue to burn.
Bu Tuesday morning I’m starting to melt down: it has been
nine months of applied horribleness, with the hideous shock of diagnosis
followed by surgery, chemotherapy and now radiotherapy: slashing, poisoning and
burning. The assault on the body is constant, and it does horrible things to
the mind. I’m just so very tired of it all now.
At the hospital, I lie down on the table for the final dose
of radiation, and pull down the hospital gown to expose my breast. A trainee
radiologist is in charge of putting me into position, and her supervisor tut-tuts,
saying ‘Be careful! Look how sore the breast is’ and then to me ‘I think you
should see the nurse afterwards to help you with that.’
‘I saw the nurse on Friday’ I say ‘and she told me to bugger
off, more or less.’
‘We’ll find you another nurse, then,’ says the radiologist. ‘Your
skin really needs looking at.’
Finally I am in exactly the right position; the radiologists
all leave the room, the machine begins to click and whirr around my breast for
the last time, and I start to cry, undone by the kindness of the radiologist. Tears
stream down my face but I can’t lift my hand to brush them away: radiotherapy
treatment is all about not moving one
iota. Today’s soundtrack is vintage Motown, and as Marvin Gaye sings ‘I heard
it through the grapevine’ I try desperately to stop my chest heaving as I cry,
in case this makes the radiation go to the wrong place.
The radiologists come back in, and I am allowed to move
again. As I sit up, clutching the hospital gown to my bosom, one of them says ‘Congratulations,
Caroline, you’ve finished your treatm…..’ her voice trails off as she sees that
I am in tears.
One of the radiologists hugs and comforts me, and another
says ‘No! You should be HAPPY – you’ve finished all your treatment.’
‘I’m sorry’ I say ‘It’s just that it’s all been a bit much.
Nine months of treatment. I am happy really – really I am.’
Somehow, I end up seeing the same nurse, and am tempted
simply to leave, but my breast hurts too much. This time she is marginally more
pleasant, concedes that the skin has now broken, cleans the wound and puts on a
dressing.
I ask how long I should keep the dressing on.
‘That depends on how much it oozes’ she replies, and gives me
a pile of dressings to take home.
Afterwards I walk up the Fulham Palace Road into Hammersmith
to do some errands, but the tears continue to flow, so I give up and go home.
State of mind:
I went swimming today, so …’ecstatic’ pretty much sums it up
Anxiety level/insane euphoria (+/- 1-10,000):today
I have the insane euphoria WITHOUT the Dexys – how good is that?
Fatigue/weakness: tired after the swimming, but
in a good way. That makes a nice change.
Nausea demon:
he LOVED his surprise party last night, especially the Pimms and home-made
macarons (salted caramel and rhubarb flavours, to die for, thank you again
Christina and Jecca, my Scottish macaron-making friends). Pimms was a new
experience for him and I explained that it is a particularly English drink, and
will probably not be available at his next gig chez the Russian oligarch. I
told him he is welcome to pop round here for a glass; we will always be glad to see
him so long as he is OFF DUTY.
Despair Demon: he’s
fading round the edges, starting to look a little insubstantial. He’ll be hanging
on in there for another couple of days in case the tooth extraction works out badly,
but he knows he’s on the way out now.
Chemo Muse:
we had an EXCELLENT time at the pool today, although the other swimmers must
have wondered who I was talking to. Probably just as well they couldn’t see her
jumping up and down by the side of the pool with that head full of snakes
writhing about, though. I wonder if she’s ever considered having a perm? Can
you perm a cranially-attached viper? She has them highlighted, but I think that
might just be paint.
Chemo Brian: we
had an EXCELLENT nap on the sofa together after I came back tired out after the
swimming.
I’m not a great one for war movies, but there’s one I saw as
a child that always comes to mind when thinking about endurance and delayed gratification: it’s
called ‘Ice Cold In Alex.’ Set in north
Africa during the Western Desert Campaign of World War II, it stars John Mills
as Captain Anson, a transport pool officer leading the crew of an Austin K2
ambulance as they drive across the desert back to British lines, whilst trying
to avoid the troops of Rommel’s Afrika
Korps. Anson motivates himself by thinking of the ice cold lager he will
order when they finally reach the safety of Alexandria - the 'Alex' of the title. When they finally get there, that glass of Carlsberg is the
best thing he has ever drunk in his life.
‘Going for a Swim at the Charing Cross Sports Club’ isn’t quite
as snappy as ‘Ice Cold In Alex,’ but the mental process has been pretty much
the same for me as for the tired soldier negotiating all sorts of obstacles and
dangers in the heat of the desert (the film was based on a true story): you get
through what you have to get through by keeping your head down and motoring on,
but one of the things that helps you keep going is that image in your head of
what it’s going to be like when the nightmare ends and you can just STOP, and
then do whatever will make you feel better.
My ‘ice cold beer in Alex’ equivalent was thinking of the moment
when I could get back in the swimming pool, push off and glide freely
through the cool silky water, feel my arms and legs moving properly again and re-inhabit
my physical self in a way to do with health and pleasure, not ill-health and
pain.
That moment came this morning and after swimming a few
lengths I had to stop for a minute, not because I was too weak to continue, but
because I was crying and my swimming goggles were misting up from the inside.
I’ve cried a hell of a lot during the last eight months - which have featured an abundance of very bad
news, pain, unpleasant and invasive medical procedures, fear and despair – but today I was
crying tears of happiness, knowing that the worst of the cancer treatment is now
over, and that I am free to swim and get strong again.
Cancer no longer owns me, and I’m starting to reclaim my life,
and my self.
Once my goggles were demisted I got
my head down again and went on to swim 22 lengths in all, which is 550 metres -
not bad for the first time back in the water. I didn’t overdo it; I just kept
swimming, slowly, until I started to feel a bit weak. It’s left me very tired,
but it’s a healthy tiredness, the tiredness of physical effort. It’ll be a
while before I’m back to swimming 2 miles at a time again, but it’s a good
start.
And now I’m going to sign off for the time being: tired but
happy, getting stronger both mentally and physically every day, and looking forward to the future again.
I’d like to thank all the staff
at the Charing Cross Hospital for their dedication and patience in treating a
very reluctant and sometimes less than compliant patient, and in particular the
wonderful Rebecca Johl – aka Matron
Becky/World Mum/Mother Goddess/PICC line Wrangler Supreme – Matron of the
Chemo Day Ward on 6 East, who transformed my chemo experience for the better once
she became involved in my care. Becky, I am eternally grateful. You will get
your reward in heaven, but in the mean time I will fulfil my promise to bake
cakes for the chemo ward in due course.
My partner, R, has suffered along with me during chemo in a
very real sense, as will be evident to anyone reading the blog. He, too, is physically and emotionally exhausted, and has done so much to look after me –
whilst also juggling a full time job and other family responsibilities - with
very little support coming his way, as often happens to carers. Now it’s my
turn to look after him, and I will. Thank you, R. You are the best of men.
My family – particularly MamaFo and BigSisFo – have been
mercilessly mocked on the blog throughout but are still talking to me, and were
a huge support in every way, as were my stepfather and stepsisters (and my
other sister whom I am not allowed to mention on the blog). Thank you all.
Many friends have been incredibly generous in finding ways to
cheer me up with visits, outings, and lovely presents, which I’m sure I didn’t
deserve, but enjoyed hugely nevertheless: thank you Clare Paterson, Gill
Carrick, Kirstie Hepburn, Andrea Gillies, Emma Beddington, Fiona Laird, Henri Hunter, Lynette Szczepanik,
@Madame Nottingham, Christina and Jecca Maxwell, and Sasha Wilkins (aka Liberty London Girl fashion, food and dog
blogger supreme). I’ve a horrible feeling I’ve missed someone out, and if
so you are fully entitled to come round and berate me.
My Ayvalik friends have been cheering me on with emails and lots of photos to remind me of what I'll be seeing again soon in the Aegean - thank you Dor, Tara and Bridget, and also Jed in the UAE. I will see you all very soon at the Camel Barn.
My American friends Jen Fishler, Glenn Pence and Janet Paraschos have all been regular, very cheering commenters on the blog, something which was much appreciated.
Finally, a very big thank you to all of you have been reading
the blog – old friends and new, real life and virtual, Twitter and Facebook, fellow cancer and chemo
patients, medics and bioethicists - for keeping me company on
what has been a rather gruelling ride, for sponsoring my chemo and, most of
all, for sending me so many messages of support all the way through, via so many
different media – every one of which helped me to keep going with the chemo when
I wanted to give up which, if I’m honest, was pretty much all of the time. You
helped me get there, and I am extremely grateful for that.
Thank you, all of you - I'm a very lucky woman xx
And I really can't finish this post without a final blast from Bruce...so here you go:
Fatigue/weakness: it’s all a bit random now – I’m
getting stronger, but there are still days of being completely wiped out.
Nausea demon:
completely oblivious to his surprise leaving party preparations, because he’s
spent the whole day with headphones on, chanting tables of Russian irregular
verbs. Which, it turns out, are very pretty:
жаждать: жажду, жаждешь,жаждут
стонать: стону, стонешь
жаждать: жажду, жаждешь,жаждут
дремать: дремлю, дремлешь, дремлют
Despair Demon: looking
depressed – his job is going to be so much harder once I’m out of the house and
exercising properly again.
Chemo Muse:
she has track suit, whistle, a peaked cap and trainers that glow in the dark – so,
all set to go as my new swimming coach tomorrow.
Chemo Brian: since
he is intent upon accompanying me to Ayvalik, we’re going to have sit down and
have a serious talk about Turkish drug laws.
State of mind:
We’re all going to the pool tomorrow, pool tomorrow, pool tomorrow...
When you’re first diagnosed with cancer it is unreal: you
think they must have made a mistake, that this is a bad dream from which
you will soon wake up, and then everything will go back to normal. That phase
finishes – at least it did in my case –
once the treatment begins, and they start performing unpleasant, invasive and
sometimes painful procedures on you, after which there is no more possibility
of denial. For me, that was on October 3rd last year, the day before
my lumpectomy operation, when they injected radioactive dye into the nipple of
my right breast without any anaesthetic; I still flinch every time I remember both
the pain and the way the shock of it blew away my denial, forcing me to face up
to the fact that the cancer was real, and there was no escaping from the many
months of treatment to come.
At that point the enormous psychological and physical impact of
the cancer and its treatment becomes, if not your whole reality, then the
overwhelmingly dominant feature of it: I have often thought that being
diagnosed with, and undergoing treatment for, cancer is like undergoing a
strange kind of assault course, in which you
are what is being assaulted, mentally and physically, for an extended period of
time. Chemotherapy treatment in particular is an 18 week toxic endurance test which
ravages both body and mind, and more or less puts you under house arrest
with its combination of crippling fatigue and the very real danger from acquiring
any kind of infection in your immuno-suppressed state.
Writing this blog is what has saved me from going completely demented
during the last 18 weeks of chemotherapy treatment: I started it the day before
the first dose of FEC, at which time I was still deeply reluctant to have
chemo, and fairly crazed with anxiety about what was going to happen to me, and
have published a post on the blog every single day since, without fail, although
some posts made in extremis were
fairly brief.
The posts averaged about 1000 words a
day, though, and total word count is now around 140,000 words, which is half as
long again as my DPhil thesis, which took several years to write, not 18 weeks –
this Stakhanovite work rate can only be attributed, I think, to the extraordinary mental energy and focus that
the Dexamethasone steroids gave me. I can’t find any other explanation for it.
There was a fair amount of medical drama going on throughout
the chemotherapy treatment, as well as the day to day torment of the side
effects, so I was never short of things to write about, and the daily
discipline of putting it all into a coherent narrative, and meeting my
self-imposed midnight deadline, gave me a task to do, and a sense of purpose,
and prevented me from spending too much time lying on the sofa feeling sorry
for myself and sobbing over the Pity Of It All.
Many people have told me that reading the blog has proved
helpful to them, which makes me very happy; in addition, the ‘Sponsor My Chemo’
drive has now raised £1,500 for The Haven Breast Cancer Support Centres, which
I’m also extremely pleased about.
To be honest, though, I started the blog for entirely selfish
reasons, to try and make bearable something which I not only perceived to be
unbearable, but had spent twenty years swearing I would NEVER do, after the
death of my former husband from a chemo-related infection. Never say never – look where it got me.
And it worked brilliantly for that particular
purpose: writing the blog every day became my project, my homework, the thing
which enabled me to distance myself from what I was going through. I couldn’t
get away from the cancer and the chemo, but writing about it somehow enabled me
to remove myself from it, for some of the time. I had an extremely bad time,
physically, during the chemotherapy, including some unfortunate occurrences at
the hospital, but writing about it made it mentally bearable, more or less.
Now, though, I am in the last week of the last chemo cycle
and as FEC finally lets me go, it’s time for me to let go of the daily writing
of the blog. Its job is done, and I’m tired of the daily deadline. There is
more treatment ahead – 3 weeks of radiotherapy in May/June, and then 5 years of
taking the hormonal drug Tamoxifen – but with the end of chemo and my release
from its chemical prison, the cancer and its treatment will no longer be
playing such a dominant role in my life. I need to leave it behind now, and get
on with my life again.
There’s going to be a period of convalescence
–it takes 4 to 6 weeks for the chemotherapy drugs to leave your body, although
the fatigue can last for months, and the radiotherapy treatment will cause more
fatigue – but I hope to be properly physically fit again by the end of the
summer. I was told breast cancer takes a year out of your life, and so it has
proved.
Tomorrow, when I plan to get back into the swimming pool again
for the first time since the chemo started, will be a hugely symbolic day for
me: I will be moving on, both physically and mentally, free at last from the chemical prison, and that also seems the
right time to make my final daily post on the blog. I will keep the blog going,
and continue to post on an occasional basis, but the unbroken narrative of Chemo
Nights will end tomorrow, on Day 134.
