Chemo Demons
– all temporarily absent, due to the one-week delay before FEC4. A brief
semblance of normality has returned. They’re all off doing God knows what, but
will doubtless be back tomorrow to get a good night’s sleep before going back
on duty forFEC4
Anxiety level
(1-10):Out
in the sunshine today, all seemed well with the world, and was; but in 2 days’
time…
State of mind:
When I think about going back to the chemo ward on Thursday, my stomach turns
over. It is an actual physical sensation, brought on just by visualising the
chemo ward, the machines and the tubes, and the plastic bags of chemo
drugs. I shudder, internally and externally.
It’s 3.30 pm, and I am walking in the sunshine on the Thames
towpath, somewhere between Hammersmith Bridge and Barnes Bridge. It’s an
improbably beautiful day, and it feels as if I’ve been let out of prison. Today,
for pretty much the first time since I started chemotherapy treatment 70 odd
days ago, I feel – well, utterly normal.
It’s a beautiful day – an incandescently beautiful day – with
a clear blue sky and sunshine that feels warm on your face. It’s a day that
says spring is nearly here, that the natural world is waking up after its long
winter sleep, and there is a throng of people relishing its blueness and
brightness down by the river: rowers, runners, cyclists, walkers, people
pushing buggies or walking their dogs, crowds of people sitting at tables
outside the riverside pubs, lovers entwined on a secluded bench. I am more
happy than I can say to be amongst them.
Last year, I used to walk along this towpath from Hammersmith
to Barnes Bridge and back every day; it’s the one place in this busy part of
West London where the space, the light, the trees, the birds and the water allow
you to forget that you are in the heart of one of the world’s great cities. Today,
I am exhilarated to be out here again: it’s such a long time since I’ve felt
this normal, and been able to walk this far. I’m tiring, but instead of turning
and heading for home I stop and sit down on a bench for a while, to savour the sunlight,
the air and the freedom.
I close my eyes and feel the warmth of the sun on my face,
and the touch of a gentle breeze from the river rippling through my hair. One
of the techniques said to be useful for dealing with the stress of cancer is
mindfulness, living in the moment, and in one sense that is exactly what I am
doing now, focusing on the pleasurable sensations evoked by the sun and the
breeze.
But living in the moment can only extend so far, today: another
part of my consciousness is trying to soak up and retain these sensory
pleasures, and the glitter of the light on the water, and the pair of swans I watch
making a stately progress down the river. I am trying to imprint all these
things on my brain, so that when I’m in the chemo ward again on Thursday, going
back into my chemical prison, listening to the clicks and gurgles as the poisons
are pumped into my veins, and knowing that the silence of my body is about to
end, I will be able to close my eyes and transport myself back to this bench, feel
the sun warming my skin, the breeze ruffling my hair, and watch the slow, graceful
glide of the swans downstream.
Hair:
demanding to be re-snooded – it’s the only part of me that’s looking forward to
FEC4
Nausea demon:
still away
Chemo Muse:
she wants me to keep more regular desk hours, and stop finishing off blog posts
late at night, and I do see her point. R feels much the same.
Chemo Brian: chilling
on the sofa on a great big heap of cushions.
.
Fatigue/weakness:
much stronger now.
Anxiety level
(1-10):I
had a blood test this afternoon to check
the state of my neutrophils; fingers crossed they’ll be OK for more chemo on Thursday.
State of mind:
Trying to think beyond chemo, far off though that still seems,
Back in September, there are 4 weeks to wait until my surgery,
and I have a month to get through, knowing that the tumour is inside me,
growing; growing slowly, but growing nevertheless. There is a power in naming
things, and I name my tumour, so I can visualise my enemy: he is Mr
Collins in Pride and Prejudice, short, fat, pompous and self-satisfied. He is
greedy, and he wants EVERYTHING.
Jane Austen’s Mr Collins sits there complacently waiting for
Mr Bennet to die so he can evict Mrs Bennet and her daughters from Longbourn, and
take possession of the estate. My Mr Collins is equally greedy, but more active;
he doesn’t want to stay in my breast, he is Napoleon, looking for an empire. He
wants to battle his way into my lymph nodes and then colonise the far flung
parts of my body – the bones, the brain, the liver. The places where breast
cancer likes to go.
To do that, he needs to be fed: my reading leads me to
understand that some foods will feed your cancer, and others will hinder its
growth, or help to prevent it from returning. Refined sugars and white flour, in
particular, help cancer grow by increasing blood levels of glucose, leading to
production of insulin and IGF (insulin-like growth factor 1) , which stimulate
cell growth and inflammation, effectively acting as fertiliser for tumours.
Mr Collins loves pizza and bacon sandwiches, lemon drizzle
cake and custard tarts, salami and prosciutto (he’s particularly fond of
processed meats, apparently). He doesn’t like fruit and vegetables, especially
brightly coloured ones: red peppers, broccoli, carrots and cabbage,
raspberries and blueberries, plums and red grapes.
What he hates most of all, apparently, is green tea, the
anti-carcinogenic properties of which are so strong that it is Kryptonite to a
tumour like Mr Collins. On finding this out, I immediately buy some green tea,
and with every mug I drink I imagine Mr Collins, shuddering and squirming as it
hits him, beside himself with impotent rage:
‘How DARE you!’ he splutters ‘How dare you insult me with
this inhospitable beverage.’
Writhing in discomfort under the shower of green tea he
begins to shrink, and behind the bellicose pomposity his fat little red cheeks
are starting to pale and deflate.
Mr Collins and I are in a fight to the death: I know that
once he has been cut out of me he will have left traces, cancer cells
circulating in my bloodstream, looking for a safe harbour in which to plant
themselves and grow. He will be able to regenerate, reinvent himself in my
body, unless he is killed in one of several different ways: the treatments that the doctors are giving me – surgery, radiotherapy, chemotherapy and the
hormonal drug Tamoxifen - are the heavy weapons, but I can help myself by not
giving Mr Collins the food that he craves.
It’s almost never too late, apparently, to start eating
yourself well: our bodies provide the environment in which cancers grow, and
other diseases develop, and we are what eat. The more refined and processed
foods we eat, especially sugar, and the more meat, the more we are prone to a
wide variety of chronic diseases. The more we eat a diet rich in fruit and
vegetables, whole grains, pulses, olive oil and fish, the healthier we are likely to be. Eating well
won’t cure my cancer, but it may play a significant role in stopping it from
coming back, and from stopping me develop other diseases as I get older.
I’ve known this for years, read about it dozens of times, as
I’m sure have you: it all becomes a lot more vivid though, when you think that
your bacon sandwich is going to be feeding Mr Collins.
P.S. There’s a lot of scientific
research been carried out in recent years on the extent to which specific foods, or chemical
compounds within them, promote or hinder the growth of cancer cells. I’ve read
two excellent summaries of this research: Anticancer:
A New Way of Life by Dr David Servan-Schreiber, a doctor and professor of Psychiatry
at the University of Pittsburgh who was diagnosed with a highly aggressive
brain tumour in 1993 but survived against all the odds for 18 years, much of
which he devoted to researching cancer prevention and inhibition through stimulation
of the immune system via nutrition and psychological techniques. He was not
looking for a ‘cure’ for cancer, or to replace standard cancer treatments: he
was intent on finding ways to complement the external treatments of chemotherapy
and radiotherapy by strengthening the body from the inside.
The other book is Foods
to Fight Cancer , by two Canadian biochemists at the University of Montreal
who run a laboratory of molecular medicine devoted to research on this subject. This provides a comprehensive guide to scientific research on foods with anti-carcinogenic properties.
Fatigue/weakness:
getting stronger every day. Tomorrow I will go to the hospital to have another
blood test, and see if my neutrophils have recovered enough for me to have
chemo this week.
Hair:
It needs cutting, but that is not going to happen until after chemo, if there’s
still enough left to cut.
Nausea demon:
Has sent us a postcard from the Lake District, where he seems to be enjoying
himself enormously yomping over the fells.
Chemo Muse:
Sat me down this morning, and got me to work again – I feel all the better for
it.
Despair Demon: kicked
him out again, with the help of the Chemo Muse – hard work is the antidote to
most spiritual ailments.
Chemo Brian: seems
unusually riled by Camille Paglia’s assertion in the Sunday Times today that
Rihanna is the new Diana; I tend to agree with R’s view that Camille Paglia is
best left back in the nineties, where she belongs.
.
Anxiety level
(1-10):my
only anxiety at the moment is anything standing between me and FEC 4 on
Thursday.
State of mind:
improving
News from the Tramuntana
Mountains: MamaFo rings, having lunched well (a few
butterflied prawns, followed by a little foie gras with apple; she invented the
high protein diet about 50 years ago, and remains a size 10) to say how much
the title of yesterday’s blog post had made her laugh. She also observes that
after 69 days of reading my blog she is now determined never to have chemo
herself, should the eventuality ever arise. She reminds me that she is nearly 82,
has been smoking for 60 years, and has yet to get cancer. ‘Hilarious, isn’t it,
darling?’ ‘Yes, Mother’ I reply ‘Yes, it really is’.
The Men’s Final of the US Open is pushed
back to Monday in 2012, because of inclement weather. I have a strong feeling
that this match is going to be the one when Andy Murray finally becomes a Grand
Slam Champion, something I have been waiting for ever since I first saw him
play as a lanky, stroppy teenager back in 2005. He needed time to finish
growing, become stronger, and sort out his head, but right from the beginning
it was evident he had not only the talent, but that inner core of steel needed
to become a Grand Slam Champion, and the US Open has always been his favourite
tournament, on his best surface, the one he is most likely to win.
So Monday September 10th is a big day for me, one
I’ve been waiting for a very long time; it is also the day on which we are
going back to Charing Cross Hospital to meet the surgeon who is going to
operate on my breast. Before today, this has all been very theoretical; now,
the wheels are beginning to turn, and I have to face up to what is going to
happen to me.
The appointment is for 9.10, which is good, as clinics tend
to run late as the day goes on; at the beginning of the day, we should get in
and out reasonably quickly, and then R can go to work. At 9.15 a doctor calls
us into an office, sits us down, and tells us that he’s very sorry, but Mr H,
the surgeon, won’t be there for another two hours. He doesn’t explain why. We don’t
have to stay and wait; we are free to leave, but should return at 11.15 am. We
thank him for letting us know, and walk outside into the sunshine, debating
what to do.
We decide to make use of the time by going to the Haven, the
Breast Cancer Support Centre which is quite close by, in Fulham, so that R can
see it for the first time. R hunkers down on a sofa and reads his book, while I
browse in the library, but we’re both too tense to concentrate. By 11am we are
back in the Breast Clinic waiting room, and 20 minutes later a man comes in
whom I recognise as Mr H – I’ve already googled him. Google has informed me
that Mr H is a highly experienced breast surgeon of about 50 who has worked in
the USA as well as the UK, has an MPhil as well as all his medical
qualifications, and a number of research publications to his name. He also has
a private practice in Harley Street, and is Head of Breast Surgery at this
hospital; on paper, at least, he sounds excellent.
After my bruising experience with Mr G, however, I am
approaching this meeting with extreme caution, and a great deal of anxiety. I
know surgeons need to be good at cutting people up, and putting them back
together again; interpersonal skills are not part of the job description. But I’m
damned if I’m going to let anyone else treat me with such blatant discourtesy.
I needn’t have worried – Mr H turns out to be as impressive
in person as he is on paper; he is courteous, kind, and doesn’t feel the need
to talk down to us. On the internet I found a list of questions that you should
ask your breast surgeon when you meet him for the first time; top of the list
is how many times he has done this kind of operation, but I can see that might
not do, here. Operating on breasts is what Mr H does, and has been doing for at
least 20 years, so we can skip the preliminaries. We ask about the cancer, and
how they decide on the course of treatment: he has endless patience with our
questions, which are many, and is crystal clear in his explanations. This is a man completely
on top of his game, who is also personable, and taking pains to put us at our
ease; he cannot be faulted. My tumour is, they think, relatively small - about 1.4 cm. It is Stage II, which means that although it has invaded the breast tissue outside the duct in which it originated, it is still at an early stage, and its growth is relatively slow; it is not an aggressive cancer. They don't think it has yet spread to my lymph nodes, which are the first port of call after the breast when a cancer begins to spread. The operation Mr H will perform is a Wide Local Excision (WLE), commonly known as a lumpectomy. In the bad old days, a diagnosis of breast cancer automatically meant a mastectomy, however small the tumour, or early the stage; nowadays, though, they try to conserve the breast if at all possible. Mr H assures us that the cosmetic result in my case is likely to be very good, that the breast will not be notably different in size or shape, and that there will be little, if any, scarring.
He asks to examine my breast, as he needs to think about how
to approach the surgery. I disrobe, and point to the location of the lump, just
under the surface on the upper slope of my right breast. Mr H feels the lump
with great care, and gazes at my breast, deep in thought. At this point it
strikes me, very forcefully, that my life will literally be in this man’s hands:
he is going to take a scalpel and slice me open to remove the lump of deadly mutant
cells inside. My future is completely dependent on his skill. I’ve never had
any kind of surgery before, and this sudden realisation of what he is going to
do is shocking; my eyes fill with tears and I close them, so no one will see.
Mr H starts to talk about what he will do, his fingers moving
over my breast to show me. He is a sculptor, I realise, a sculptor of breasts,
and he talks like the craftsman he is.
‘What we’ll do’ he says ‘is make the incision around the areola,
the edge of the nipple here, in order
to minimise any scarring. Then, when we’ve taken out the tumour, we’ll move
some tissue from down here’ – he touches the lower curve of my breast below the
nipple – ‘up to fill the space, and then we’ll re-position the nipple higher up.’
Oh, Jesus Christ, he’s going to MOVE
my NIPPLE. Please God, no, please don’t let this be happening to me.
Mr H continues, smiling ‘So, really, we’ll just be giving you
a breast lift’.
What the F***? Did he just say a
BREAST LIFT???
I gaze at him stupidly. ‘A breast lift? You mean like in
cosmetic surgery?’
‘Yes, yes, of course’ I say, terrified of having offended him.
‘I do realise that. Sorry – I was just a bit surprised.’
He continues: ‘But yes, the overall effect will be the same
as a cosmetic breast lift. Afterwards, your nipple will be higher up on the
breast.’
I am still finding this difficult to compute.
‘So afterwards it will look different from my other breast?’
‘Oh, don’t worry about that’ says Mr H ‘I can do the other
one to match, later on.’
That afternoon, after R has gone to work, I google breast
lifts, and discover that women apparently in their right minds,
healthy women with healthy breasts, pay upwards of £5,000 to have this kind of
surgery. It floors me. I read about the risks of the surgery, and the pain it
involves, and how long it takes to recover, and I think ‘Healthy women PAY to
have this done to themselves? REALLY?’
My immediate public reaction is to start writing cheery
emails about wonderful my surgeon is, and joking about how I’m going to end up
with the tits of a 22 year old, and how lucky is THAT?
Inside my head, though, I’m not doing too well.
In the late evening, it’s the tennis, and my chance to exult
as Andy Murray roars through a titanic five set struggle to become Britain’s
first male Grand Slam Champion for nearly a century. My heart isn’t in it,
though, and we go to bed, but I lie there in the dark unable to sleep, my head
full of what is going to happen on the operating table.
Eventually I give up and get out of bed, creeping out of the
room as quietly as possible so as not to wake R. In the sitting room I finally
stop trying to hold myself together, and sit watching the last set of the
tennis with tears streaming down my face, trying to cry quietly.
I end up on the floor, curled up in a foetal position on the
old Caucasian rug which is one of the few things I brought with me when I moved
in with R. Andy Murray wins, achieves his life-time dream and weeps with
joy, as R comes in and finds me on the floor, sobbing one sentence over and
over again: ‘I don’t want him to cut me up, I don’t want him to cut me up, I
don’t want him to cut me up.’
We both know, of course, that what I want is no longer of any importance whatsoever.
Hair:
Mostly still attached, but thinning a little. Am starting to find its extreme
shininess a little sinister, in the circumstances.
Nausea demon:
Currently off-duty, and gone fell-walking. Lucky him.
Chemo Muse:
Very unhappy with me for general debility, lack of application and for letting
a virus take over my computer (as if I had any choice in the matter)
Despair Demon: Found
a gaping hole in my psychic defences after two extraordinarily bad weeks, and
has moved right back in. He keeps reminding me that we are only halfway through
the chemo, and after the chemo has finished there will be several weeks of
radiotherapy, which may inflict permanent damage on my already damaged right
lung, not to mention burning of the skin, and more debilitating fatigue, and
then there will be five years of the anti-oestrogen drug Tamoxifen, which has
all sorts of unpleasant side effects. He has also been reminding me how nice
the weather is in Goa at this time of year.
Chemo Brian: keeps
offering me mind-altering pharmaceuticalsfrom the sofa to cheer me up, and in truth being away with the fairies is
looking a more and more attractive proposition every day.
.
Anxiety level
(1-10):Sharp
anxiety has been replaced by dull despair.
State of mind:
I did something really, really mean yesterday – as I walked down King St in
Hammersmith to pick up my laptop from the computer repair shop, deeply anxious
about whether or not all my data had been destroyed by the virus, I was
accosted by a strapping young man with a charming smile and a cocky air, who
was wearing a jacket which indicated he was fund-raising for the British Red
Cross. These days it is almost impossible to walk down King St without being
approached like this; charity fund raisers hang around there in packs, every
day. This boy made the fatal error of greeting me by saying something about me
needing to smile. I looked him in the eye and snarled ‘I’ve got cancer. I’m
probably going to die soon. Why don’t you go and tell someone else to smile?’ So
I think it’s fair to say my current state of mind is akin to that of a wounded
18 foot crocodile in a Seriously Bad Mood – approach at your extreme peril.
Before I got cancer, I looked at mortality from the point of
view of a demographer: life expectancy at birth in the UK has almost doubled
over the last 100 years, making us the luckiest people who have ever lived, in
health terms. We all have to die of something,
and now that we’ve stopped dying young from infectious diseases, of course more
of us are going to die of cancer and heart disease and all the other
degenerative diseases of later life. Death is not optional, however much we might like to pretend
otherwise.
And if you get cancer relatively young – well, you’re just
unlucky.
During one of my early meetings with Stan the Oncologist late
last October, whilst I was still wrestling with the question of whether or not
to have chemo - and I did have some real
choice in the matter, for reasons which will be explained in due course –
he said to me, in relation to my breast cancer, ‘I expect you’re thinking ‘Why me?’, aren’t you?’
I looked at him blankly ‘No, not at all. My husband died of
leukaemia when he was 32. That was 20 years ago, and I’ve had a whole adult
life since then. I’m lucky. He never even got to be middle-aged. Why not me?’
I was, however, somewhat surprised to develop breast cancer, as there
is none in my family and all my immediate maternal forebears have lived into
their late 80s or early 90s, fully compos
mentis and with remarkably little in the way of physical debility; given
that there is a strong genetic component in longevity I wasn’t at all worried
about getting cancer, of any sort.
Immediately after my diagnosis, therefore, I started researching breast cancer,
and what causes it, and was horrified to realise that I had, unknowingly, been
in two high risk categories: I have not had any children and, despite being in my
fifties, have not yet started the menopause. Both of these characteristics
considerably increase your chance of getting breast cancer, because they both
mean that in middle age you still have unusually high levels of the female
hormone oestrogen, which is strongly linked to breast cancer. I used to be
rather proud of the fact that my body was still manufacturing so much oestrogen
– every woman dreads getting the menopause. I had absolutely no idea that the
oestrogen I was so proud of was feeding the tumour that was developing in my
right breast. They score tumours for hormone sensitivity, and mine scored 7/8:
it just loved oestrogen.
The way this works in quantitative terms is that overall
women who have had children have a 30% lower risk than nulliparous women and the
risk of breast cancer is increased by 17% for every 5-year delay in menopause.
So, other things being equal, my chances of getting breast cancer were at least
50 % higher than a woman of my age who had had children, and experienced the
menopause. I was still unlucky, though, because the absolute risk of getting breast
cancer at my age is about 1 in 25 – my added risk factors brought it down to
maybe 1 in 15 (if my maths is wrong, then
shoot me – at this stage I might be quite grateful).
If you’re interested in looking at the various risk factors
for breast cancer, they’re listed and explained very clearly here
on the Cancer Research UK website. It’s important to remember, though, that
risk factors don’t translate directly into causes - for example, the single
highest risk factor for developing breast cancer is age, but age in itself
doesn’t cause the cancer.
Just as it’s pointless to wail ‘why me?’ about cancer, it’s
also generally pointless to search for a single factor that has
‘caused’ your cancer, given the complex aetiology of the disease: relatively
few cases have a direct genetic link – more than 85% of women with breast cancer
have no family history of it, and more than 85% of women who have a close
relative with breast cancer will never develop the disease.
Factors to do with your reproductive history are very important, as outlined above in my own
case. Essentially, the more children you have, and the more you breastfeed, the
less your risk of breast cancer. It’s well-known that women in developed
countries have much higher rates of breast cancer than women in less developed
countries, and this is often ascribed to diet, but in fact a large part of the
variation (according to Cancer Research UK, anyway) is due to the fact that
women in developed countries have far fewer children, and breastfeed for much
shorter periods.
Other factors thought to be important are higher level of
endogenous hormones, especially oestrogen and testosterone in post-menopausal
women, and exogenous hormones, in the form of oral contraceptives and Hormone
Replacement Therapy; the latter gives users a 66% increased risk of breast
cancer whilst they’re actually taking it, although the risk increase is
temporary – it’s certainly enough to give one pause for thought about using it,
though,
I remembered reading that being overweight was an important
risk factor for breast cancer, but the data here are quite strange: obesity
does increase breast cancer risk moderately, but only if you’re
post-menopausal; before the menopause, being overweight actually reduces breast cancer risk, and if you
don’t believe me, look here
. I include this unexpected fact to cheer up any woman reading this who’s
overweight, pre-menopausal and feeling paranoid that every piece of toast she
eats is contributing to her risk of breast cancer.
The academic research on diet and breast cancer in general is
equivocal, although if you read the ‘grey’ literature you will find it
passionately argued by proponents of various dietary regimes that particular foodstuffs
e.g. dairy products, meat, white flour and sugar are heavily implicated in many
cancers. For breast cancer, there is some hard evidence that saturated fat
increases risk, as does high alcohol intake, and lack of exercise, but none of
these factors can be pointed to as a single cause.
For me, anyway, it doesn’t really matter now why I got the
disease; the real question is whether there is anything I can do, in terms of
my lifestyle, to aid the surgery, chemo, radiotherapy and Tamoxifen in
preventing the cancer from returning. With all those treatments, my probability
of disease-free survival for 5 years is 90%, which sounds pretty good.
Conversely, however, there is a 1 in 10 chance of it coming back within 5
years, and so far the statistics have been against me, given that there was
only a 1 in 15 chance of me getting it in the first place.
So, once I’d researched how breast cancer worked, and seen
how the risk factors had stacked up against me before I got it, it seemed like
a very sensible next step to see what, if anything, I could add to the
doctors’ work in trying to reduce the risk of a re-occurrence, without going to
the extremes of a completely vegan diet, or coffee enemas. Whilst there are no
guarantees there is, it turns out, quite a lot you can do, which I will write
about in another post, soon.
General status update: both the computer and I have cheered up massively today – the computer
repair shop got rid of the virus and saved all my data, and after a few days
rest my neutrophils must be regenerating, because I’m starting to feeling somewhat
stronger.
I will resume writing the blog properly again tomorrow – thank you
for your patience, everyone, except for my old friend Gill who, demonstrating
her characteristic level of empathy, said ‘I resent being deprived of my Chemo
Nights fix, Fo, so get up off your arse and get back to work, soonest.’
Gill is as terrifying as MamaFo (and another exiled daughter of north
Yorkshire, to boot), but considerably nearer, as she lives in Wapping and, like
Byron’s Assyrian, is wont to descend unexpectedly upon Gurkha Towers like the
wolf on the fold, with her cohorts all gleaming in purple and gold…
I’ll be at my desk first thing in the morning, Gill – I promise.
Fatigue/weakness: Severe. Walking from one end of the flat to the other is quite
a challenge, today. I don’t like this AT ALL.
Hair: Secondary consideration, really, now I can barely walk.
Nausea demon: Making sympathetic noises, bringing me drinks: this is no fun
for him, as he needs me to be strong enough for the chemo so he can start
tormenting me again.
Chemo Muse: Urging me on, but even she can see that I’m too weak to
produce much today.
Chemo Brian: He came and joined me on the bed this morning, until lunch-time –
I didn’t have the energy to make the journey to the sofa..
Anxiety level (1-10):R has caught a cold, which he may or may not have caught from me. Now
quite worried about re-catching the original cold (can you do that?), or
acquiring the new one, if different. I am so weak, and so overwhelmingly tired, today that I’m
scared I’m going down with it already, and that the increased weakness is resulting
from the effect on my embattled neutrophils of trying to fight off yet another
infection. I’m not sure they’re strong enough to be doing overtime.
State of mind: Wishing there was a neutrophil thermometer; my temperature is
OK at the moment, but I’m so weak it feels as if my remaining neutrophils are
starting to abandon ship - they’re sure as hell not showing any signs of
regeneration.
Yesterday I was feeling very weak, but was still able
to walk down the road to Marks & Spencer, a distance of maybe 400 yards, to buy a
lemon drizzle cake because my friend Andrea was coming round in the afternoon (we never got round to eating it, what with all
strawberry cupcakes Andrea brought – now I’m left with a whole lemon drizzle
cake wailing for attention from the kitchen, dammit).
This morning, in contrast, I didn’t feel able to get out of bed until
lunch-time, and spent much of the morning asleep; when the need for a cup of
coffee finally forced me to attempt the journey from the bedroom to the kitchen,
I felt like Shackleton at the end of a very long day staggering through an
Antarctic blizzard, dragging a sledge; every step was the most enormous effort.
Sitting here at my computer keyboard, now, even my
fingers feel weak. I’m typing so slowly I’m practically doing it one letter at
a time. This level of weakness is frightening, to be honest. I doubt it’s the
result of a couple of hours enjoying myself yesterday; it may be I’m going down
with another infection. I do hope not. But I’m much weaker than I was on
Monday, when I was able to walk down to the hospital, albeit only just.
I just checked my temperature, however, and it’s fine,
so this is probably just a continued post-viral malaise, exaggerated into something scarier by my hypochondria. Getting cancer in no way prevents you
from continuing to be a world class hypochondriac; and, let us never forget, my
current terrifying state of physical debility has absolutely nothing to do with
the cancer – it’s all about the chemo.Three doses of chemo plus a respiratory infection have made me this ill, not the cancer; and now I've got to get strong again so that they can give me three more doses of poison.
I can’t write the blog post I wanted to do today
because Chemo Brian is calling me from the sofa, and I need to get back there
soon, before I just slump face down over the keyboard and wake up later with ‘qwertyuiop’
engraved on my face.
Got to go, as rest is now imperative – I’ll try again tomorrow.
Today, I have been in theory been resting, as per the
instructions of my oncologist, so that those now rather scarce neutrophils in
my blood will start regenerating, and I will become strong enough to withstand
more chemo. They can give you injections to help this process along, but I’d
much prefer to do it naturally, if I can – there are more than enough drugs in
my system already, and the drugs they inject you with bring, of course, yet more
side effects…
My lovely friend Andrea Gillies was coming to visit me
today, and I probably should have cancelled it, but she is only in town briefly
from Scotland and I have been so looking forward to it, so I didn’t.
We had the BEST time.
Andrea surprised me with all manner of pink-themed presents,
it being Valentine’s week, including some quite outrageously beautiful flowers (which proved very difficult to photograph- this really does not do them justice)
As I was still coughing rather a lot we decided, for purely medicinal purposes, to try a little of the blood orange vodka I gave R for his birthday; combined with strawberry cupcakes, it proved quite extraordinarily soothing, so we tried a little more. By the early evening, when we had set the world to rights, and laughed a great deal, and Andrea was well overdue to meet some friends down town, we were both feeling very soothed indeed.
And now I really must rest, but I'm sure the level of my neutrophils is shooting up already: the mind and body are so closely linked, and nothing improves your spirits better than laughter, and the company of good friends.
Nausea demon, Chemo
Muse, Chemo
Brian: they just don’t know what to do with themselves – see below.
Fatigue/weakness: considerable
Sleep, lack of: n/a
Anxiety level (1-10):shape-shifting from dread of chemo to fear of neutropenia
State of mind: resigned
‘
'Only when we drink poison are we well'
Charles Baudelaire, Les Fleurs du Mal
I think this afternoon is probably the first time I
have ever directly channelled the spirit of a rabid Arctic Wolf but, when it occurs,
the sensation is really quite unmistakable. The trigger is a charming young doctor
and PhD researcher, who greets me at the oncology clinic today with the
following words: ‘You’re looking well.’
It is a truth universally acknowledged by chemo patients
– at least all the ones I hang out with on the BCC UK forums – that the single most
annoying comment of all the many thrown at them by family, friends, enemies,
complete strangers and medics is this: ‘You’re looking well’. I reveal this in
the spirit of a public service announcement so that you, Gentle Reader, will
never end up on the receiving end of a chemo patient’s steroid-fuelled
homicidal rage in response to making what you thought was an innocuous and
helpful comment.
Whatever we might look like, WE FEEL LIKE HELL, OK?
The steroids might make what remains of our hair glossy,
and our skin smooth and glowing, the poison might perhaps be giving us some
kind of strange toxic bloom, but all of this is entirely illusory: we are being
systematically poisoned, with hideous side effects; we may or may not be going to
die sooner rather than later; we no longer have any control over our lives, and
are trapped in a chemical prison at the mercy of the medical profession; we are
frequently on the verge of losing it entirely, and then some fool smiles
at us cheerfully and says ‘ You’re looking well’.
Dr S is conducting a research study with chemo
patients, to see if any connection can be found between the composition of a
patient’s blood, and the level of severity of chemo side effects they suffer.
It is a useful study which may help cancer patients in future, I am happy to be
participating in it, and Dr S is highly likeable, empathetic and kind, but
today she is completely nonplussed, because I’ve had a hell of a week and, most discourteously, I
respond to the poor girl’s polite queries by giving her the unvarnished truth.
I haven’t seen Dr S since I signed up for the study,
just before my chemo started. Now she wants a little chat, and to make
arrangements for more blood tests after FEC 4.
‘So, how’s it been
going?’ she asks, brightly.
‘It’s HORRIBLE.’ I am in no mood to mince words.
‘It’s unspeakably horrible.’ Then, just in case she
hasn’t got the message: ‘It’s just VILE.’
‘Oh dear’ she says ‘I’m sorry to hear it hasn’t been
going well for you, Caroline.’
‘WELL?’ I snarl, ‘It’s CHEMO. I’m being systematically
poisoned – in what way can this be expected to go WELL?’
By this time Dr S is looking slightly panic-stricken,
as well she might when faced with a rabid Artic wolf, thinly disguised as a
chemo patient, eyeing up her throat in the manner of one who might be
planning to tear it out in the very near future.
‘But you’ve still got your hair', she squeaks, desperate to remedy the situation 'and it looks lovely.’
‘Yes’ I say slowly, my fury suddenly dissipating as swiftly
as it arrived, ‘at least I still have my hair – well, most of it, anyway.’
Later, I have my pre-chemo oncology appointment with a
new registrar, Dr V, who has just rotated in; holding my file, he asks me how
many cycles of FEC I have had so far, and if I have been suffering from any
side effects.
Oh, bloody hell, I think, here we go again – don’t doctors EVER leave
any even vaguely representative notes in the files? What do they write in there
– their shopping lists?
I recite my nausea history, I recite all the drugs I need
pre-chemo and after chemo, I tell him about the stomach toxicity and that I
also need Omeprazole to deal with that, and soon Dr V is au fait with the entire panoply of pharmaceuticals that my body requires
to deal with the side effects of being poisoned. I wonder, in passing, if I could leave this Homeric oral history recitation in the form of
an MP3 file, in order to avoid having to repeat it all at every meeting. I
also tell him about my recent A&E visit, and the viral infection from which
I am now recovering.
Fine – now he just has to do the prescriptions, and
then I can get out of here.
Then he looks at his computer screen and says ‘Hmmm.’
What do you mean, hmmmm, I
don’t like hmmm, WHAT’S THE MATTER?
He turns back to look at me, and sighs. ‘I’m afraid
your neutrophils are right down.’
I had the usual blood test before I came in here, and
the results are already on the system: neutrophils are a specific kind of white blood cell
that help prevent and fight infections, and the normal level of neutrophils
in the blood is between 2.5 – 6.0.
or, to be more accurate, normal ANC (Absolute Neutrophil
Count) values range from 2,500 to 6,000 neutrophils per cubic millimetre of
blood.In order to be strong enough for chemo, your
white blood cells must be at a certain level – 1.5. Mine were at 1.5 when I was
in A&E last week, but now they have dropped to 1.1.That makes me mildly neutropenic, and unfit
for chemo. A neutrophil level of 0.5 or less would put me in serious danger,
and the chemo will destroy more neutrophils, so I can’t have any more chemo
until I have created a lot more neutrophils for the chemo to kill.
This is the simple but deadly arithmetic of
chemotherapy, and there’s no arguing with it.
All my aggression gone, I feel like a sad failure. I
haven’t made the grade; it reminds me of when I failed my cycling proficiency
test.‘You could come in and have another blood test on
Wednesday morning to see if it’s improved’ says Dr V ‘but I’d be happier if you
just postponed the chemo until next week. Your body needs more time to recover
from the last dose of chemo, and from the viral infection.'
‘The only thing worse than having chemo is not having chemo’ I say, sadly, but I
know he is right. I was startled, earlier, by how weak my legs were when I was
walking down the Fulham Palace Road towards the hospital.
My strong, swimmer’s legs.
‘It won’t make any difference to the overall outcome’,
says Dr V. ‘People often have to postpone their chemo until they get a bit
stronger.’
‘It’s fine’ I say, ‘Really. I could do with the rest.
Is there anything I can do that might help the neutrophils recover? Eat
spinach?’
Dr V laughs ‘I’m afraid the Popeye model isn’t
applicable here. No, there’s nothing you can do – you should be fine by next
week if you just go home, and rest.’.
I thank him, we shake hands, and then I trudge back up
the Fulham Palace Road to go and do exactly that.
Hair: Newly washed and very shiny; shedding very slowly, and still
mostly there.
Nausea demon: getting excited about FEC 4 on Wednesday; he’s ready to roll.
Chemo Muse: getting excited about the big dose of steroids which will
accompany FEC 4 on Wednesday.
Chemo Brian: regained the sofa while the Coughing Demon was in the bathroom,
and is now defending his position with adroit use of his knitting needles.
Coughing Demon:
he’s been unable to bring about the
hoped-for progression to pneumonia, so I’m hoping he will start to lose
interest very soon, especially as I don’t want him to frighten the oncologist into
delaying FEC 4.
Fatigue/weakness: If I’m not strong enough to totter down the Fulham Palace road
to see the oncologist for the pre-chemo meeting tomorrow, then I’ll get a taxi.
Sorted.
Sleep, lack of: Now woken up in the early morning by coughing rather than
nausea, but that will all change on Wednesday after FEC 4. Or maybe it’ll be
coughing AND nausea. Now there’s a thought.
Anxiety level (1-10):We’re on the fourth floor, so urban foxes aren’t going to get in here unless they find a Very Big Ladder
Indeed.
State of mind: coughing makes your brain hurt, if you do it long enough and
hard enough. I could say my mind aches, but that would be to ignore the whole
problem of the mind-brain identity question.
Visiting the Haven is like being enfolded in a warm
embrace: when I walk through their doors in early September 2012, 5 days after
being diagnosed with breast cancer, I am still in a state of shock and extreme
mental agitation, but even before I speak to anyone there, the building itself
begins to have an immediate calming effect on my troubled mind.
The London Haven is located in Effie Road, just behind
Fulham Broadway, in anold Welsh Presbyterian church converted
by a designer of genius into a sanctuary which combines light and space,
texture and colour, in such a way as to create an environment which is aesthetically
pleasing, soothing, and spiritually uplifting. The heavy wooden entrance doors
are carved into an ornate Tree of Life design and inside, the whole ground floor
is a light-filled open space with curved walls, soaring ceilings and wooden
floors covered in jewel-coloured kilims; at the front is the reception area, at
the back is a grouping of large, comfortable sofas, an extensive library on
everything to do with breast cancer, with computers for further research, and a
kitchen area where visitors can make themselves tea or coffee. There is also, at
the far end, a wall fountain over a mosaic-tiled pool, where you can sit and
trail your fingers in the cool water as you listen to its soothing sounds.
The other floors contain many rooms for treatments and
counselling and meetings, but this welcoming public space on the ground floor
is the heart of the Haven: it calms your nerves, draws you in, and makes you
feel instantly at home, as does the knowledge that everyone in this building either
has breast cancer, like you, or is someone who is trained to help you deal with
it. You no longer feel like a freak, a diseased outcast;
you are somewhere where you belong. You may have been forced to join the exclusive
club of which no one wants to become a member but oh my, does it have fabulous
premises!
On my first visit, rather early for my 10 o’clock
appointment, I make a mug of coffee, sink into the squashy embrace of a sage
green sofa, and look nervously at the other women already sitting round the
table who, it occurs to me, are my new peer group: we all have breast cancer. I
fall into conversation with two women in their early thirties who are already
veterans of the disease; they have endured surgery and courses of chemotherapy,
recently completed. They seem to shudder visibly as they talk about the
chemotherapy, and I think, poor things,
thank God I’m not going to have go through all that, I just couldn’t bear it.
I tell them, my voice wobbling, that I have just been
diagnosed, and they are kind to me. I tell them I will be having a lumpectomy,
and then radiotherapy, but no chemo, and they nod, and smile at me with sad
smiles. It is only much later that I realise their main kindness is in not pointing
out that my confidence about ‘no chemo’ is entirely misplaced – until the
surgeon has cut you open and removed the tumour from your breast, and a lymph
node from under your arm, and until the path lab has then decoded the encrypted
histological narrative of your cancer, the doctors are only guessing.
Where breast cancer is concerned, the bad news often
comes slowly; I know now how unwise it is to suppose that the best case
scenario presented immediately after your diagnosis will necessarily prevail.
Our talk turns to diagnoses, and I learn that not all
are as straight-forward as mine. One of the women, S, was pregnant when she
found the lump in her breast; her concerns were dismissed by her GP, who told her
that breast lumps were common in pregnancy. Later, after the baby was born, S
was again told not to worry, as breast lumps were common in breast-feeding
mothers.Her voice tight with anger, S
tells me that by the time the GP finally agreed to send her for a biopsy, her
diagnosis had been delayed for 8 months, and the cancer had spread to her lymph
nodes.
The other woman, G, is a banker, a City high-flyer.
She tells a story of how, fearing for her job in the current financial
downturn, she agreed with her employers to delay her mastectomy operation for a
month, because the timing was inconvenient for them; I am so astonished by this
story I ask her to repeat it, because the callousness seems beyond belief. The
question which echoes insistently through my head - why didn’t you tell them where they could stick their f***ing job? –
remains unasked, as it would be unhelpful. G is young, single, probably has a
huge mortgage, and her identity is, or was, bound up with her job – from the distant
look in her eyes, though, it seems she has now realised it is not her job that
is the life or death matter.
My introductory
appointment is with N, a warm and welcoming woman who specialises in nutrition.
She hears the story of my diagnosis, asks me some questions about my personal history,
and listens to me with infinite patience and kindness as I ricochet wildly between
gabbling furiously, making jokes, and bursting into tears.
Eventually, with our time running out, N guides me
gently towards choosing some of the various services that the Haven can offer.
Each visitor to the Haven is allowed ten free hours of complementary therapies,
from a very comprehensive list including counselling, nutritional advice,
herbal medicine, creative visualisation, acupuncture, aromatherapy, relaxation,
Tai Chi, yoga…and many more.
I know what I need the most, and it is something that I
have never once previously considered – counselling. My image of therapy has
been formed primarily through Woody Allen films of rich, neurotic New Yorkers
paying ridiculous amounts of money to someone to listen to their First World problems,
and endless yammering about Me Me Me; my own approach to good psychiatric
health, in contrast, is to stop blaming your parents and keep your Inner Child
firmly locked up in a cupboard. In fact, given that my family originated in
North Yorkshire, my Inner Child should be profoundly grateful that she isn’t confined
to the coal cellar.
In my current circumstances, though, all bets are off.
It is crystal clear to me that I desperately need someone to talk to, someone
who is not emotionally invested in me. One of the first things you realise
after being diagnosed with cancer is that you have to deal not only with your
own emotional distress, but also the emotions of your family and friends, which
are sometimes not particularly helpful.
In the worst case – and every cancer patient seems to
come across such a person at least once – you end up having to comfort someone because
they feel your news is just too distressing for them to deal with. In my own
example of this, documented elsewhere in this blog, a very close friend wrote
to me to say that she couldn’t be around me while I had cancer, as she had a
phobia about illness, but would be happy to pick up our friendship again later
on, once I was cancer-free. I was so appalled that I never replied, but what I wanted
to ask her was: ‘So, with your phobia about illness, what will you do when
cancer comes for you?’
More generally, the problem is that you can’t be completely
honest about your feelings because your emotions are so raw, your pain and fear
and anger so powerful, that inflicting them on those who love you the most will
leave them profoundly distressed by their inability to help you, to make it
better for you. I hate the word ‘journey’ in relation to cancer, but in this
context it is very apposite: the hugely painful transition through shock, denial,
and anger to acceptance of your new reality is a journey that you essentially have
to make alone, however much you are loved and supported.
One of the very few moments of insight I have in those
first few demented weeks after diagnosis is this recognition of an urgent need
to talk to someone disinterested, a professional someone who will be emotionally
unmoved by my distress, who can help me to unravel the Gordian knot of fear,
panic, anger and anxiety that is pulsating inside my head.
I ask for three counselling sessions (it is later extended
tomore), and this is the single best decision
I make after my diagnosis; the counselling sessions will become a life-line,
helping to preserve my sanity in the difficult weeks and months that lie ahead.
I will come back to how the counselling works in
another post, but will finish this one by describing something that happened on
one of my many subsequent visits to the Haven, and which sums up the ethos of
the place perfectly: one day, signing the visitors’ book, I said to the
receptionist ‘You know, it’s so welcoming and comfortable here that I always
just want to curl up on one of those lovely big sofas and go to sleep.’
‘That’s what they’re there for’ she replied. ‘So you
can come in here whenever you like, and just put it all aside for a while –
would you like a blanket?’
