Fatigue/weakness: epic – getting rather fed up with this now. Much worse than previous cycles, maybe because I had the infection last week. The infection has gone, but my body just doesn’t seem to be recovering yet. It’d better get a move on, because we’ve got blood tests on Wednesday, and my neutrophils need to be back, all present and correct, or FEC6 will be delayed.. Can’t help feeling that being so ridiculously weak is NOT A GOOD SIGN.
Anxiety level/insane euphoria (+/- 1-10,000):the insane euphoria seems but a dim and distant memory at this stage of the chemo cycle. Very, very anxious about my wretched neutrophils which I imagine, in serried ranks, looking like little white Smurfs - weak and feeble little white Smurfs, in fact some of them seem to be lying down., which can't be good. GET UP!!
Nausea Demon: Still away with the Benedictine monks at worth Abbey – have just texted to ask if he could make himself useful for once and slip in a quick prayer on behalf of my neutrophils. Maybe light a couple of candles, too, that’s always good. Or a rocket.
Despair Demon: I’m going to take him down to the river to watch the Boat Race with us – maybe that’ll cheer him up.
Chemo Muse: she doesn’t quite see the point of the Boat Race, or competitve sport in general, for that matter,. preferring simply to kill her opponents, on the whole. However, after I explain to her that the event involves sixteen quite exceptionally fit young men in tight lycra, she agrees to accompany us, after all. I just hope she doesn’t start flicking her snaky locks in the Oxford crew’s direction, because we want a nice straight win with no distractions, this year. She can do what she likes with the Cambridge crew, obvs.
Chemo Brian: the only competitive sport he’s interested in is smoke-ring blowing, so he’s staying home on the sofa with his new obsession, a boxed set of Series 1 of Game of Thrones, which seems QUITE RUDE for American tv where everyone, bizarrely, keeps their bras on in bed (viz: Sex and the City, Buffy the Vampire slayer). R has explained to me, however, that there is one almost secret American tv channel where quite a lot of rudeness goes on, so that would account for True Blood, as well.
State of mind: It’s Easter!! There are daffodils and tulips, and I have received a lovely Easter egg with honeycomb crisp chocolates, and we have special wildly OTT Easter cupcakes t (see below). And it’s also Boat Race Day! And Oxford are going to win! ALL IS WELL.
Hair: not talkng to me now, after I gave it a telling-off yesterday. Fine, see if I care.
MamaFo: she rang yesterday, and I asked her what she would like for her 82nd birthday, which is this week. Her answer: the new David Bowie album.
HAPPY EASTER!
I love Easter, and everything about it: the whole sense of rebirth
and renewal and regeneration at this time of year, the daffodils and tulips and
crocuses and trees covered in blossom, the Cadbury’s creme eggs and Malteaster
Bunnies and all the rest of the mad chocolatiness, and the completely daft way
in which Easter, this major religious event and public holiday involving not
one, but two, Bank Holidays in the UK, is a moveable feast, the date of which each
year is arbitrarily determined by the
phases of the moon.
As far as I am concerned there is nothing not to like about Easter,
which made it particularly unfortunate that when I moved abroad in 2006, it was
to a country where they don’t have Easter.
Not at all.
Not even a tiny bit.
It didn’t really occur to me at first that in Turkey, a 98% Muslim
country, there would be no Easter, because I'd never lived anywhere before where Easter wasn't; I moved to Ankara, to teach at Bilkent
University, in the January, and in the general melee of culture shock over the
next couple of months it took a while to realise that there was a Big Black Hole
where Easter ought to be coming along.
In the UK the shops start filling up with Easter
confectionery immediately after the Christmas, which is of course ridiculous,
but you try getting to March alone in a foreign country and suddenly realising
that there is not a single chocolate egg
to be had, for love nor money, anywhere nearer than Bulgaria.
No crème eggs, no chocolate Easter bunnies, NO EASTER, and
they’re a bit short on daffodils in Turkey as well, to be honest. I got people
to send stuff over, but it wasn’t the same – there was just no sense of
impending Easteriness, and all the general joy that goes with that. The nearest
Turkish equivalent, which long pre-dates Islam, is the festival of Hıdırellez,
in early May, when Turks takes to the woods en masse for picnics and jumping
over bonfires to mark the beginning of spring, but there is no chocolate
involved, no fluffy yellow chicks, not a rabbit to be seen. A bit of a burnt barbecued beef sausage and a scorched arse from
jumping over a bonfire don’t even come close..
It was hard, very hard.
By the third year, getting desperate, I arranged a trip to a remote part of
south-eastern Turkey so that my time there would coincide with the Syriac
Orthodox Easter: around the city of Mardin, close to the Syrian border, are the
remnants of the 2,000 year old Syriac Orthodox community (the
Syriac Orthodox Church was founded by St Peter himself in Antioch, now the Turkish
city of Antakya), most of whom have now
emigrated due to a long history of harrassment by the Turkish authorities - whilst Christians are not, in theory, actively persecuted in Turkey, since the expulsion of the orthodox Greeks,
Armenians and other minorities in the
1920s, they have certainly not been encouraged - but some of whom cling on, with
a handful of churches and monasteries, where all the services are still
conducted in Aramaic. I’m not particularly religious, but I was brought up in
the Church of England, and Easter services are part of my cultural DNA; there was
a profound sense of relief and familiarity sitting in that old stone church in
Mardin for the rites of the Syriac Orthodox Easter, even though the entire thing
was in Aramaic, and I couldn’t understand a single word. Words weren’t
necessary.
Now that I’m back in the UK I have re-embraced Easter with
great enthusiasm, and this year more so than ever, as it marks not only the end
of the winter, but also the end of my sentence in the chemical prison of chemo.
Today is Easter Sunday, symbolic of rebirth and renewal; on Thursday the administration
of the final dose of chemo, FEC6, will mark my liberation from the trials of
the chemo ward and, after a couple of weeks’ more unpleasantness, the beginning
of my physical recovery, another kind of a rebirth.
Just four more days until the chemo finish line.
Four more days.
Happy Easter, everyone!
Yes, you weren't imagining it: this cupcake actually has a WHOLE creme egg on top of it. This little piece
of Easter genius comes courtesy of the Upsy Daisy Bakery in Hammersmith
Eyes: it’s
a good thing I know this vision problem is a chemo side effect, because
otherwise I’d be thinking that I was starting to go blind.
Anxiety level/insane euphoria (+/- 1-10,000):fartoo tired to be anxious, and the euphoria
waits on Thursday’s Dexy delivery.
Nausea demon:
Away. With the Benedictine monks at Worth Abbey. Learning how to do Gregorian
chant. Allegedly. By strange coincidence, StepSisFo (Major) told me today that
she said a prayer for me in Worth Abbey recently, which is excellent news. I’m
all for the praying and the ‘holding in the light’ - ALL orisons, of whatever
nature, very gratefully received here in Trying To Avoid Death Central.
Despair Demon: now
well and truly sunk into his very own Slough of Despond, which is a bit of a
turn up for the book, given his particular line of work. I’m sworn to secrecy
on this as far as the other Chemo Demons are concerned, because he fears losing
all professional credibility should it become known that he is, er, depressed. I’ve suggested Prozac, and he’s thinking
about it.
Chemo Muse:
given my current state of debility, she’s eased off a bit and is letting me do
fairly short blog posts at the moment, but only on the understanding that as
soon as we get some more steroids it will be all systems go again.
Chemo Brian: his
Sirencall from the sofa is constantly
in my ears - just give me 5 more minutes to finish this, Brian, and I’m there.
State of mind:
much like Shackleton towards the end of the Endurance expedition, I imagine. Not
long to go now…
Hair:
fomenting revolt amongst the follicles in protest against its lack of
maintenance– don’t get too cocky, Hair: I could always choose NOT to
deep-freeze my skull in screaming agony with the Cold Cap for the last dose of
FEC, and then where would you be? In a pile on the floor within 10 days, that’s
where, so watch it.
Primum non nocere - ‘first, do no harm’ – is one of
the basic principles of medical ethics, instilled into doctors at medical
school; it is meant to remind them that, given any particular medical problem,
it is sometimes better not to do
something, or to do nothing, rather than risk causing more harm than good. It reminds doctors that they must consider the possible harm
that any intervention might do, especially interventions that carry an obvious
risk of harm but a less certain chance of benefit.
The harm that medical interventions can do is much on my mind
today because at the moment I’m very weak, my brain is fuzzy and my vision is blurred,
and sitting at the computer to write is really quite hard to do. Going for a
walk, which I tried to do this afternoon, was more of a challenge still; my
legs feel floppy and rubbery, my whole body is suffused with weakness, and this
is what the chemo has done to me, not the cancer.
Chemotherapy treatment is designed
to do you harm: it can only kill the cancer if it’s also nearly strong enough to
kill the patient who is incubating the disease, and it only works if you have
repeated doses over an extended period of time, the time in between each dose
being the minimum compatible with patient survival. So for the last four months, and five doses of
chemo, it has all been about my recovering sufficiently after each dose of
poison simplyin order to be strong enough to survive being poisoned again.
Think about that, Dear Reader: all this business with the
neutrophils, and making sure that the immune system has recovered each time –
it’s all directed at making sure that the next dose of poison won’t actually
kill you, and it’s a very fine line they draw. I will be so, so glad after the
final dose of poison on Thursday to know that from that point onwards the
toxins will gradually start leaving my body for good.
After Thursday, I won’t be just getting strong enough to be
poisoned again: every day will mean a little less poison in my body, and this
time it won’t be replaced. There will be the usual two weeks of nasty side
effects, but after that I will be on the way to becoming strong, healthy and
poison-free again. I will be getting strong enough to resume my life again, outside
this chemical prison of the last 4 months; an invisible prison, but a prison
nevertheless.
So, I’ve just got to get through another four days of this
weakness, praying I’m going to be strong enough by Thursday to be poisoned
again for the sixth and final time.
Fatigue/weakness: I’m
so tired, I’m so so tired, I’m just totally, utterly FECked
Eyes: increasingly blurry, which means
the chemo must now be Right Inside My Eyeballs – nice.
Anxiety level/insane euphoria (+/- 1-10,000):very,
very anxious in case FEC 6 is delayed this week because of a low neutrophil
count, after the latest infection. If there’s anyone out there who does the
whole praying thing, then if you could put in a good word for me with Her Upstairs
with a view to a little spontaneous neutrophil upsurge by Wednesday, I would be
very grateful indeed.
Nausea demon:
away on his Easter retreat with the Benedictine monks at Worth Abbey in Sussex –
I sincerely hope he didn’t decide to take some E.coli with him as a surprise
gift.
Despair Demon: he’s
still moaning to me about his treatment at the hands of the Chemo Muse, who seems to have dropped
him and moved on without a backward glance, or even informing him, for that
matter. Given his status as the David Beckham figure of the infernal regions –
he’s even been featured in the advertising for the Calvin Klein Demonic Pants
Range clad only in his tattoos and a suspiciously well-stuffed pair of tighty
whities – he’s usually beating women off with sticks (I speak figuratively,
obvs) and he can’t quite compute that he’s been dumped. He keeps thinking up
daft reasons why she’s not responding to his texts. I give it another 2 days
max before I finally snap and spray ‘She’s just not that into you’ in 2 feet
high letters on the sitting-room wall.
Chemo Muse:
she completely wore me out yesterday, so she was in no position to complain
about me spending a large part of today on the sofa with Chemo Brian and his woolly rat familiar.
State of mind:
I’ll be having my LAST dose of chemo on Thursday, neutrophils allowing – can’t
quite get my head round that yet...
Hair:
it’s in such a terrible state that now it’s demanding to go back into the
snood, given my refusal to cut it until after the last dose of chemo, just in
case. I keep thinking I should be wearing a badge saying ‘Yes, I know my hair looks awful, but I’m not
allowed to touch it, and I SHOULD REALLY HAVE BEEN BALD BY NOW, OK?’ The only
mercy is that MamaFo is safely 1,000 miles away and will not be in a position
to launch one of her special critiques of my hair until well after the chemo is
all done.
I’m afraid writing yesterday’s mammoth blog-post, one of the
longest in the last 15 weeks of Chemo Nights, which took more than 6 hours,
also used up more energy than I actually had to spare – today the fatigue has
hit me again so hard that I’ve spent most of the day horizontal, and a
considerable proportion of that with my eyes closed. Chemo Brian has taken charge
of my brain, so we’re in a pleasantly fuzzy place with no mental acuity
expected, which is really just as well.
Hey, at least there’ll be more steroids on Thursday- although
it’s starting to worry me slightly just how much I’m looking forward to the
next delivery of Dexys…
I can’t manage any more than this today, so if you’re stuck
for something to read with your toast and marmalade, here’s a link to something
I wrote earlier on the Camel Barn Library blog about Ayvalik, the strange,
half-ruined Ottoman Greek town in the Turkish north Aegean that was my home
until recently, and whither I will be returning in early May for a couple of weeks
of post-chemo recuperation: My
City of Ruins.
It’s a hell of a long way from the Fulham Palace Road…
and it's always good to have another Springsteen video, no?
Anxiety level/insane euphoria (+/- 1-10,000):A
week from now, it’ll be Dexy Time
again!! Yay!! Oh, and there’ll be the final dose of chemo as well, obvs.
Nausea demon:
he’s been doing a little shopping to prepare for his monastic retreat; I think
he’s going to find it hellish cold this weekend in those open-toed sandals.
Despair Demon: He’s
deeply depressed because the Chemo Muse has been ignoring him, and I find
myself trying to cheer him up. WHAT IS WRONG WITH THIS PICTURE?
Chemo Muse:
She’s had me hard at it today – see below. She keeps talking about completing
narrative arcs in the limited time we’ve got left..
Chemo Brian: just
chilling on the sofa with his little woolly rat friend, Chemo Rat Brian.
State of mind:
nostalgic
Hair:
it’s seen better days, frankly, but our current focus is simply on
attachedness, and it’s still scoring 10 out 10 on that front.
Previously on Chemo Nights: After meeting via a mutual friend on
Twitter during a discussion about procrastination, R and I bonded deeply
over our mutual love of the London
Review of Books and have conducted a prolonged epistolary and telephonic
romance, whilst living 2,000 miles apart. After 8 months I have finally agreed
to fly back to London from my home in the Aegean to meet R, but am convinced
that this is all going to end in tears when our virtual romance is exposed to
the cruel light of day. Now read on….
The view from Richmond Hill over the River Thames, winding
its way through a sylvan landscape essentially unchanged since it was laid out
in the 18th century, is one of the most beautiful in London. The
town of Richmond was founded in the early 16th Century, after Henry VII built
Richmond Palace, and during the 18th Century, an Arcadia was re-created along
the Thames below Richmond Hill. Royal
and aristocratic palaces were constructed, with gardens and parks, and linked
by a series of avenues, set within a framework of meadow and woodland.
It is the only view in England to be protected by an Act of
Parliament:
The Richmond, Ham and
Petersham Open Spaces Act was passed in 1902, after a campaign by local
people against development in the area, to protect the land on and below
Richmond Hill and thus preserve the fine foreground views to the west and
south. Immortalised in paintings by Sir Joshua Reynolds and J.M.W. Turner, it
was described by Sir Walter Scott as "an unrivalled landscape". The Terrace Walk, laid out near the top of the hill in the
18th century, gives a panoramic view over south-west London, taking in the
river Thames, royal parks and palaces.
All very fine and all very touristy,
I can hear you thinking, but what’s that got to do with the price of fish?
Be patient, dear Reader, I’m coming to that….
The Terrace Walk on the top of Richmond Hill is one of my
favourite places in the world to walk, or just to sit and look at the
stupendous view; there are dozens of comfortable wooden benches there, each one
bearing a small plaque with the name of someone else who used to love to sit on
Richmond Hill and look at the view, and in whose memory the bench was donated.
When I die, I’d like to be remembered with a bench on Richmond Hill, too (n.b. I’m not being morbid - I have an
excellent prognosis, remember).
I know this place so well because my parents own a flat in
one of the roads of Victorian and Edwardian houses that cover the more gently
sloping ground on the back of Richmond Hill, and I stayed there frequently on
visits back to the UK during the five years I was living in Turkey. It’s only a
five minute walk from the flat up to the Terrace Walk, and I would spend some
time there every day without fail; it’s a place I became addicted to.
So when it came to choosing somewhere for R and I to meet in
real life for the very first time (after
an on-line virtual courtship lasting for 8 months, with no opportunity to meet
as we were living 2,000 miles apart), the Terrace at the top of Richmond Hill
seemed the perfect venue: if the whole thing turned out to be a complete
disaster, and we found ourselves without a word to say to one another, we could
always just look at the view…
I arrived back in the UK for the first time in 3 years in the
early hours of the morning on Sunday, March 27th, 2011; I spent much
of that day wandering around Richmond in a daze, in deep culture shock after
spending such a long period of time living in a converted camel barn in
Ayvalik, a very small Ottoman Greek town, on the north Aegean coast of Turkey,
170km from the nearest big city.
No cobbled streets, no head-scarved
neighbours sitting gossiping endlessly on their doorsteps, no deliveries of
logs by horse and cart, no mutant chickens escaping yet again from my
neighbour’s garden; no competing muezzins calling the faithful to prayer from
the minarets that sit so oddly on the old Greek Orthodox churches converted
into mosques; no exterior sofas for hot summer evenings, no goats, or packs of
wild dogs; no ruined houses occupied by tribes of feral cats, no pide sellers
hawking their wares at the top of their voices; no village ladies in baggy
pantaloons sitting on street corners selling wild greens, or sour plums, or pomegranates,
or buckets of ripe figs…
Much had changed since I last set foot in London, not least
that Marks and Spencer were now selling something called ‘wasabi peas’, a truly
splendid invention. Even the discovery of the amazing hot-yet-sweet taste sensation of the wasabi pea, though, could not
distract me from a rising tide of panic about the following day’s meeting with
R, which I was becoming more and more convinced would be a disaster of truly
epic proportions.
I was too old for this, much too old for this and, more
importantly, some years older than R. He professed not to be the slightest bit
bothered by this, but it still bugged the hell out of me. And I wasn’t nearly
thin enough and my hair looked awful and I didn’t have anything to wear. He
would probably take one look at me and run screaming down the hill towards the
river, and the last I would see of him would be a tiny figure in the far
distance loping across Petersham Meadows, zigzagging from side to side to avoid
the grazing cows….
Several purchases of new items of clothing later, I at least
had an outfit, but still walked back up the hill to the flat enveloped in a
deepening cloud of grim despair.
What had I been thinking, travelling
2,000 miles back to London to meet a strange man off the internet? OK, he was a
Professor of Bioethics, and we had friends in common, and we had spent the last
8 months exchanging hundreds of emails and spending hours conversing on Skype,
but he was still a Strange Man. My mother always told me not to talk to strange
men, and I should have listened to her advice. I’d been perfectly happy on my
own, I had a great life in Ayvalik, I had a LIBRARY, in a CAMEL BARN, for God’s
sake, the library I’d always wanted, and a dog, and 3 cats, and lots of
friends, wasn’t that enough? Why come
all this way and risk humiliation and rejection and a broken heart – hadn’t I
already suffered enough for one lifetime?
There was going to be a long evening to get through alone, as
R and I had arranged to meet at 10 o’clock on Monday morning - giving me Sunday to recover and regroup
after the 15 hour journey from Ayvalik - and given the frame of mind I was in,
there was only possible way to approach it: with a raid on MamaFo’s
exceptionally well-stocked drinks cabinet.
One of my mother’s hobbies - before she retired to her eyrie in the Tramuntana Mountains of Mallorca
to devote herself to Mediterranean gardening and the cultivation of the highest
quality home-grown skunk - was collecting particularly fine bottles of eau
de vie, brandy, aquavit and the like on her travels, and in the flat there were
several large cupboards packed with a world class collection of such beverages,
including my own favourite, Calvados.
In hindsight, dining solely on Calvados and wasabi peas was
probably not a terrific idea, but I was much too agitated to contemplate eating
anything more, or drinking any less. The
spasmodic texting to R of my growing existential despair may have been a bit of
a strategic error, also. R did his best to cheer me up, from a distance, but I
wasn’t in a mood to be cheered.
C: This is so hard,
today has been very difficult for me. This is so not going to work. I don't think we should do this.
R: I’m sorry you’re
feeling bad. I thought you wanted today to get your head together, and
evidently you have, but not in the way I hoped.
C : I’m too old and too
fat for all this, and I have been drinking Calvados, and now I have a RED NOSE.
R: For the record, I
don’t believe you are fat or old or have a red nose.
C: My nose always goes
red, reindeer-like: cold or alcohol, never fails.
R: Also for the record, I am
balding, and round-shouldered, and have a slight stoop. I just want to meet you, to tell you
how much I feel about you, and then you can tell me to f*** off.
C: I am only upset
because I am very, very nervous. When we meet, things will clarify. We are both
a bundle of nerves right now.
R: I want to be kind to
you, to make you happy – even if we never meet again, to give you good
memories.
C: You are going to be
so disappointed – the Tatlim with the Luminous Nose.
R: I am meeting the
woman who has stitched my heart back together, and made me happy for the first
time in years....
C : I have made major
inroads into the wasabi peas, not to mention the Calvados.
R: ...which makes you
Venus Herself.
C : You do say the
loveliest things…
And so to bed. It should have been a
sleepless, anxiety-wrack’d night, but I’d drunk far too much Calvados for that.
This is the view looking up Richmond Hill, from the water meadows by the river, towards the Terrace Walk - you can see Jerry Hall's house on the second left at the top, although Mick's long gone now, obvs..
It seems hard to imagine now, having just lived through the
coldest and snowiest March in living memory, but March and April 2011 were
exceptionally warm and sunny; the next morning was quite blindingly beautiful and
as I walked, very slowly, up Richmond Hill towards the Terrace and my awaiting
doom (R having texted me to say he had already
arrived ), the sun was blazing in a clear blue sky, birds were singing, the
trees were covered in showers of blossom –everything, in short, was wildly,
inappropriately cheerful.
I was carrying a satsuma – or, as they call them in Turkey, mandalins, or as R and I call them, mandolins – something which had become a
bit of a theme between us (you had to be
there, really), had a bit of a hangover, and was now focused with grim
determination on just getting this dreadful, ill-omened event over with and then getting on with the rest of my life, possibly in a discalced Carmelite convent
in Ayacucho, Peru, if they’d have me. There would be llamas, and colourful
ethnic knitwear, and distant, pleasing, mountain prospects whichever way you
looked…
Looking from the end of the terrace I
can see, some fifty yards distant, a man sitting on one of the benches,
reading. He is sitting opposite the telescopes and the viewing platform, which
is where we agreed to meet, so that must be R.
Oh my God, it’s HIM. But still at a
safe distance. The ball of nervousness in my stomach expands and there are a
thousand butterflies in there, fighting madly to get out.
I start walking, even more slowly
now, towards him. It’s 10 a.m. and there’s no one else much around, except a
tramp, an old-fashioned, proper tramp, bushy of beard and wild of hair, clad in
layers of slightly shredded garments, stretched out full length on his side on
one of the benches, propped up on one elbow, and smoking a roll-up with an insouciant air. As I pass
him I wonder if he has been hired by Richmond Council to add picturesqueness to
the scene as the official Tramp of Richmond Hill, like the hermits 18th
century aristocrats used to employ to people their grottoes and follies.
I’m still 25 yards away when R looks
up and sees me, and then he puts down his book and gets up from the bench,
unfolding himself into a very tall person indeed, well over six foot, a tall,
thin man with greying auburn hair and a strong handsome face on which there is
suddenly the biggest smile I have ever seen. I find myself beaming back, and
when we are five yards apart we both say ‘Hello, tatlim’ and then he takes me
in his arms and holds me close in what is possibly the longest hug the world,
and certainly the tramp, has ever seen.
And now he is real and there, after
all this time, and I can feel his mouth
against my hair and the smell of his skin and it is R, just R , exactly the way he ought to be, to
smell, to feel.
‘Here you are’ he says ‘here you are
at last – I’ve been waiting so long’, and he’s not talking about the twenty
minutes he’s been sitting on Richmond Hill.
‘There you are’ I say ‘there you are. You’re real.
You’re here.’
And then he kissed me.
We never did get to look at the view.
Postscript: That meeting on Richmond Hill was
two years ago today. We spent much of the next 3 weeks together, and then I
came back to London again for another 6 weeks during July and August. R and I both knew pretty much right from the
start that we wanted to make a life together, however difficult that might be
to arrange, and I flew back to London for the third time on October 4th,
2011, with 2 suitcases (‘on a wing and a
prayer’ as BigSisFo put it, rolling her eyes in disbelief at my folly). I
wasn’t planning to move in with R straight away, but he dragged me out of
Richmond and into his flat in Hammersmith within 24 hours of arrival, and we’ve
now been living together for 18 months.
It’s been very difficult in many ways, some of which I can’t talk about here;
it hasn’t just been the cancer we’ve had to deal with. All of that
notwithstanding, it’s been the happiest two years of my life.
And now we share just the one
subscription to the London Review of Books, and we keep them in an old wooden
toolbox I brought back with me from Ayvalik…
Anxiety level/insane euphoria (+/- 1-10,000):the
infection does not seem to be getting any worse, so with any luck my
neutrophils should be fine again in 8 days’ time for my last dose of chemo, FEC6.
Mind you, that was what I thought last time I got a respiratory infection,
leading to a neutrophil plunge and FEC4 having to be delayed for a week. But
there’s absolutely nothing I can do about it: my neutrophils either will or
will not have recovered by next Wednesday, when the blood tests will be done.
We’ve already established that eating lots of spinach won’t make any difference
at all, so I’d better just stick to the hot toasted buttered crumpets, then.
Good for calcium, buttered crumpets..
Nausea demon:
Bizarrely, he has elected to spend the Easter period on a retreat at a
Benedictine monastery in Sussex, not your typical demonic holiday destination.
He’s been staying in his room a lot for the last couple of days, now he’s more
or less off duty until FEC6, so I am no longer privy to his innermost thoughts
over dawn breakfasts, and thus have no idea what led to this new venture. I keep wondering if he TOLD them of his demonic er, ethnicity when he booked..
Chemo Muse:
she’s been keeping me very, very busy today, and also outlining ambitious plans for
our activities during FEC6, when we should have another big power surge, assuming
they give me the extra Dexys again. She’s also been rather ostentatiously much too busy to pay any attention to
the Despair Demon, but I ‘m thinking that’s probably just because she’s a Treat ‘Em Mean, Keep ‘Em Keen kind of
girl, rather than her having gone off him already. He does look rather like David
Beckham, after all, although with rather fewer tattoos.
Chemo Brian: He’s
been so lovely for the last few days, while I’ve been a) very under the weather
and b)in demented refusenik non-compliant patient mode. He never judges me. He never says I have the Wrong Attitude. I
LOVE HIM.
State of mind:
Viking, Forties, Cromarty, Dogger, Fisher, German Bight
Icy Wind of Fear - in southeast, south-westerly,
becoming cyclonic, 5-7. In northwest, westerly, veering north-westerly, 5 or 6.
Anxiety State- in north, slight,
occasionally moderate later, rising.
Internal Weather - In north, snow
showers. In south, snow showers.
Demented behaviour - falling.
Previously on Chemo Nights: it is Monday, 22nd October, 2012, and we have returned
to the hospital to receive the pathology results. Mr H has given us
the good news that the margins around the tumour were clear, but it
seems there is some bad news to follow…now read on
‘However…’
Mr H pauses for a second and his mouth does a thing which is
like the opposite of a smile. ‘Unfortunately, we did find something in your Sentinel Lymph Node. A micro-metastasis,
very tiny, just a cluster of a few cells.’
‘Cancer cells?’
Stupid question, I know perfectly
well that any use of the word ‘metastasis’ signifies spreading cancer cells,
but there’s part of my brain which insists on having it spelled out in case
there has been some kind of mistake – you always think there’s been some kind
of mistake,
‘Yes, I’m afraid so. It indicates that the cancer was just
starting to spread beyond its primary location in the tumour in your breast.’
R is holding my hand very, very tightly and the world has
gone all blurry as I struggle to stay composed.
‘So what does this mean?’
‘Well, one micro-metastasis in the sentinel lymph node is the
smallest possible indication of spread, and it’s quite possible that these are
literally the first few cells that have made it into your lymph nodes or
elsewhere. But we can’t be sure of that: it means that we need to think about some
further treatment, in case there are any more cancer cells to be picked up, in
your lymph nodes or anywhere else.’
My blood goes cold.
Does he mean chemo? After what happened to
my former husband, I have always sworn that I would never have chemotherapy – I
know far too much about the horror of it all. For the last two decades, my position has been that I
would literally rather die than have chemo.
‘What kind of treatment?’
‘In this situation there are several possibilities. One is to
have the rest of the lymph nodes under your right arm removed – a complete
Axillary Node Clearance. Alternatively, you could have radiotherapy on your
armpit – on your lymph nodes, as well as on your breast. The third option,
which is the one I would recommend, is a course of chemotherapy.’
These are words I have spent my whole adult life not wanting to hear, and never expecting to hear, coming as I do from a family that doesn’t do cancer. And even now, with cancer, I still haven’t been expecting to hear them because after the biopsy the doctors seemed pretty sure it hadn’t spread, and that all I would need was the lumpectomy and then some radiotherapy. No chemo.
I sit there in shocked silence; there is screaming going on,
but only in the inside of my head. My skull is the echo chamber for a silent
howl of pain and fear.
NO!!NOTCHEMO!!NO!!!THEYPROMISEDMENOCHEMO!!
They didn’t actually promise me no chemo, of course, because
they can’t do that, but they thought it was unlikely. Once again, I have been unlucky.
Maybe if I had discovered the lump a couple of months before, the
micro-metastasis wouldn’t have been there; with no evidence of the cancer
spreading, I would have been home free with the lumpectomy and radiotherapy
combo.
But I didn’t discover the lump a couple of months before, did
I, because I wasn’t paying attention, and hadn’t yet been for my first
mammogram, because I didn’t think that breast cancer would ever happen to me. I
had other things to worry about at the time.
A few years ago, they didn’t have the technology to find micro-metastases, so in this sense I should count myself lucky; it’s much better to know this
now, that some cancer cells had already got away, when you can actually do
something about it, than for it to come back and bite you in three years’ time,
with lots of happy little colonies of cancer cells having already set up their
own city states in the dark recesses of your lungs or your spine.
Yes, it’s a good thing to know about the micro-metastasis, I
need to get that into my head. It’s been a hideous and painful shock, but it’s
much better to know than not. The treatment, whichever it is, will be nasty:
either more surgery, for a full axillary node clearance (i.e. cutting out all the lymph nodes from under my arm), or more
radiotherapy on my armpit, both of which options may have long-lasting damaging
physical effects, or..... chemotherapy treatment, my worst nightmare.
It’s my choice, and it’s one I need to go home and research
properly, and think long and hard about, knowing that each of the options is both horrible, and physically damaging, in its own way. Do you remember that stupid game you play as kids: would you
rather be deaf, dumb or blind? That’s a bit what this seems like – I’ve got to work
out somehow which, of three bad options, is going to be the least bad for me.
As we leave the hospital and walk back up the Fulham Palace
Road, still reeling from the shock, both struggling to incorporate this new element
into our ‘story-of-the–cancer-so-far’,
my mind stops trying to assimilate the news in a positive fashion and wanders
off again onto the Goa escape plan, where it is blue and shiny and peaceful and
no one is trying to do unpleasant things to me.
Do I really need any more treatment?
Can I bear any more treatment? I can always just stop participating, no one can
make me have chemo, or any of the other
stuff. I can always JUST STOP.
I don’t voice any of this to R , of course. That will come
later.
The Chemo
Demons are all keeping well away from me because they don’t want to pick up
this bug, except Chemo Brian, of
course. who never catches anything anyway because viruses and bacteria stand no
chance against the impenetrable fug of wacky baccy smoke that permanently
surrounds him.
Anxiety level/insane euphoria: God, I’m missing the
Dexys…
State of mind:
guilty because I have been failing Cancer 101 again and displaying a Bad Attitude
and making everyone worried about me, but also defiant because a person can
only stand so much.
Hair:
much like a small, dishevelled haystack, at the moment.
Well, that’ll teach me to throw the toys out of my pram in
public: half an hour after I publish the little tantrum that was yesterday’s
blog post R comes into the bedroom - whither
I have retired with Paddy Leigh-Fermour in a state of high dudgeon - holds
out the phone and says ‘It’s Becky’.
Ah.
F***! F***! How stupid was I to write
that I’ve got an infection but I’m not going to go to the hospital, SO THERE?
WHAT WAS I THINKING?
They’re probably going to stage an
intervention…
Matron Becky – aka the
Mother Goddess and World Mum,in all her
ineffable omnipotence, omnipresence and omniscience – has been alerted to the fact that I am
behaving badly, of course she has: it seems she was in the middle of reading
the previous day’s blog post when the new one suddenly popped up and informed
her that I am down with another infection and Acting Out.
She is deeply unamused.
A difficult conversation ensues; it’s hard to hold your own
when you’re severely under the weather, mentally and physically exhausted, and
have got the Chemo Matron/World Mum/Mother
Goddess exuding gentle disapproval at you from the other end of the phone
because you are self-evidently not just being a non-compliant patient, but behaving
like an idiot in such a way as to endanger yourself and cause a great deal of
worry to your loved ones. Although R is
not in the room during this conversation, I can sense him cheering from the side-lines,
and not for me.
Matron Becky reminds me that I am in the vulnerable, highly immuno-suppressed
week mid-way through my fifth dose of chemo, and that with five doses of FEC now
inside me that is a considerable build-up of toxins inside my body, hence the
all-pervading weakness even before the infection set in. Even with the Pegfilgastrim injection, at this point
my immune system is on the floor, and with my temperature at 37.4 deg she thinks
it would be advisable for me to go down to the hospital to get my bloods done,
so they can see how my neutrophils are doing, and whether the doctors should give
them some more ammo to fight off the infection. She offers to call ahead so
they will be expecting me.
This suggestion fills me with horror.
I know everything she says is important and right, yet….
It is one of the coldest nights of the year and, although I’m
feeling truly rotten, and so very, very tired, I’m very cosy and comfortable
here with Chemo Brian and my knitted throw, a nest of cushions and a heap of
books and magazines. R couldn’t come with me to the hospital, as his little boy
is staying with us this week, so a trip to the hospital would involve several hours
alone in the A & E: blood tests, then a long wait for the results, needles,
insertion of cannulas - my PICC line being
no more - and a lengthy infusion of IV antibiotics while waiting for the
blood test results because they automatically
do that as a precaution against neutropenic sepsis.
I’m sorry, but I can’t face all that again
tonight, I just can’t.
Right now, I can’t endure any more invasive physical
procedures unless my life literally depends on it – this is the point to which my growing aversion
to hospitals and medical treatment, and my general psychological deterioration,
has now brought me. I’m really not being deliberately difficult, but both body
and mind have had enough. If I go and spend another unutterably bleak and
unpleasant few hours in the hospital now, I may end up just breaking down completely,
like I started to do at the radiotherapy planning meeting last week.
I’ve been through the A&E routine before, and I’m not
going there again unless it is absolutely necessary – as evidenced by a serious
fever, which I haven’t yet got. In the end I take my temperature again whilst
still on the phone to Becky and am deeply relieved to see that it has gone down
to 37.2 degrees.
For Becky, this is not the point, of course; my temperature
could start going back up at any moment and I am a very weak immuno-suppressed
chemo patient with an infection who would be much, much better off down at the
hospital getting my neutrophils checked out and further prophylactic measures
put in place.
And as far as my body is concerned she is right, but my soul is
no longer able to go along with the programme.
In the end, no doubt picking up on the fact that I am right
at the end of my psychological tether, Matron Becky agrees that I can stay at
home for the time being, on condition that if my temperature rises above 37.5
deg, or if I start to feel physically worse, then I will go to the hospital
straight away. Deeply relieved, I put the phone down and curl back up in my
nest of cushions and throws.
Not going nowhere, no, not me.
I'm running on empty, now.
Postscript, 24 hours later: the virus is continuing to rampage through me, I’m aching, coughing
horribly, and am so weak I can barely stand up, but my temperature has stayed
below 37.5 deg, so as long as I rest for the next few days I should be just
fine without further medical intervention (inshallah/touch wood/God willing).
At this stage of the game, I truly believe that Chemo Brian is the best
medicine…
For the last two days I’ve been feeling increasingly unwell
and determinedly putting it down to being in the very weak and feeble part of
the chemo cycle, plus the incremental effect of now being in my fifth cycle of FEC, and thus very full of accumulated poison, but this afternoon I have been forced to acknowledge that I am feeling unwell
because I am going down with a respiratory infection, and feeling worse by the
minute.
Oh God, here we go again…. this will be my third infection
during the 5 chemo cycles so far, and let us hope that it will be containable,
like the previous two, and not actually put me back in hospital, as has happened
to so many of my Cyber Chemo Buddies over the last few months, including one only yesterday. The good news is that I received an injection of Pegfilgastrim, the immune
system-boosting drug, after FEC5 10 days ago; this means that although we are
now at the point of the chemo cycle where my immune system has been heavily
suppressed by the chemo, which kills all the neutrophils, my neutrophil count won’t
be as low as it would otherwise have been.
Hopefully my body, with the help of the Pegfilgastrim, will be able to fight off this infection, and not
let it fast forward into neutropenic sepsis and a hospital admission, or even
another trip to the A & E for IV drugs, because I am just too bloody tired for all that again now, OK?
Enough already.
I’ve had it with chemo, and infections, and no immune system,
and emergencies and A&E departments and injections and IV infusions and hot
and cold running doctors.
I am so exhausted, physically and mentally, after 6 months of cancer and 15 weeks of chemo, and I just do not want to do it any more.
Any of it.
You’re meant to call the hospital if your temperature goes
above 37.5 deg, and go straight to A & E if it hits 38.0, but I’ve decided
to ignore all that this time round. I’m staying put and not doing anything at all unless it gets to be well over
38.0 deg. (it’s 37.4 at the moment). The last two infections didn’t kill me,
and my working hypothesis is that this one won’t either. And if Jesus does decide that this is the week he wants to take me for a sunbeam, well then that's just too bloody bad.
Hey, immune system, this is just a run of the mill respiratory virus, not Ebola: so please put that very expensive Pegfilgastrim injection to good use, DEAL
WITH IT on your own, and don’t bother me any further.
I'm done.
I’m going to lie down on the sofa again now with Chemo Brian
and Artemis Cooper's new biography of Patrick Leigh-Fermor and I do not wish to be disturbed.
Anxiety level/insane euphoria (+/- 1-10,000):have
skied slowly down to the blue slopes now, away from the dizzying black runs of
my seven day Dexamethasone high…
Fatigue/weakness: So
tired, so so tired… weak and wobbly legs, dizzy spells when I stand up,
although I’m not doing that very often at the moment.
Collateral damage:
there being no such thing as a free lunch, the removal of my PICC line has come
at a cost – after the last 2 doses of chemo drugs going into veins on my hand,
I now find that my left arm is rather painful inside along its lower half, the
effect of the toxic chemo drugs travelling up inside the much smaller
veins in this part of the arm. It’s been like that for10 days now, since the
last dose of chemo. I have no idea how long it will take to wear off, or
whether the inside of my arm is permanently damaged, and it makes me a little
anxious about the incremental effect of the sixth and final dose of FEC in 11
days’ time. I don’t regret getting rid of the PICC line, though: that has led
to a huge reduction in stress, and freed me from the hospital until it’s time
for FEC6. Starting to get my life back…
Eyes:
this is new – major blurriness going on, whichever pair of spectacles I wear. I
know it’s to do with the chemo because a number of my Chemo Cyber Buddies have
been having eye problems throughout, and I know it’s temporary because they’ve
all become alarmed about it, and then been assured by their oncologists that their
eyes will stop doing weird things after the chemo has finished. It’s quite
disconcerting, though, and is making it hard to read a book or focus on a
computer screen, which are the two things I spend 90% of my waking hours doing.
Nausea demon:
his work for this cycle of FEC is pretty much done, and he’s trying to distract
himself from his broken heart by making plans to go away for Easter. He’s got
no one to go with, though, because the other Chemo Demons have to stay here
with me. I suggested one of those National Trust holidays where you go and
repair dry stone-walling, or something, although given the current weather
you’d be hard –pressed to find the walls under the snow, come to think of it.
Maybe a spa break?
Chemo Muse:
she’s been out walking by the river today, hand in hand with the Despair Demon
– all very romantic. It must have been unspeakably cold but Chemo demons,
happily for them, are not affected by Severe Weather Warnings, unlike the rest of
us.
Chemo Brian: He
soothes my soul on the sofa, during these weak and feeble days of the cycle.
State of mind:
for the very first time, looking forward to the next chemo cycle, knowing it
will be THE LAST
Hair:
complaining about split ends, now it’s stopped worrying about falling out – we’re
not having a trim until the chemo is FINISHED though, sorry.
Previously on Chemo
Nights: it is October 5th,
2012, and I have returned home from the hospital the day after my lumpectomy
operation feeling really rather fine, thank you, and sit on the sofa for a couple
of hours happily tweeting and phoning family and friends. Now read on….
The vomiting - urgent,
violent - starts towards evening and continues through the night; meanwhile,
the morphine gradually wears off and my body is left feeling much as if I have
been very thoroughly beaten up by professional thugs, the kind who know how to
inflict severe damage all over your body without leaving any marks on your
face.
Nausea and vomiting are not uncommon after general
anaesthetic, but this is accompanied by an acutely sore throat, stomach pains
and toxicity (a quite comprehensive foretaste
of what is to come later with chemo, did I but know it), a positive
cornucopia of unpleasantness. I have no
idea what has hit me, or why, and am not thinking too clearly anyway, as I stagger
back and forth from the sofa to the bathroom for the next several days, but I
do dimly realise that it shouldn’t be as bad as this, that there must be
something wrong in the mix.
I call the Breast Care Nurses at the hospital; Vanessa is
unavailable, but one of her colleagues tells me that unless I have a fever,
there is no real cause for concern – I just have to ride it out. Eventually I stop
taking the medications I brought home with me from the hospital – antibiotics,
heavy duty painkillers, both of which may have bad side effects - in case they are causing the problems, and after 4
or 5 days the symptoms begin to ease.
Later, we untangle the probable
causes of these few days of extreme torment: a bad reaction to the radio-active
dye injected into me before the operation (stomach pains, toxicity), and an
allergic reaction to Amoxicillin, the antibiotic they gave me after the
operation (the violent and repeated vomiting); I am now officially allergic to Amoxicillin.
The painful throat was caused by the tube they put down it when you’re under a
general anaesthetic.
The diagnosis of cancer was my introduction to psychological
hell; these post-operative days constitute my initiation into the physical
suffering part of the programme. My imagined brief sofa convalescence curled up
with books and magazines is replaced by days of physical and mental anguish,
bafflement and incomprehension. R is running the Royal Parks Half
Marathon on behalf of the National Autistic Society on the Sunday, three days
after my operation, and I had assumed I would be up and about again by that
time, and able to go and cheer him on; he has trained for six months for this, and it is important for both of us.
Instead, while he is out giving his all in the autumn
sunshine, I lie there and weep because he has to go and do it all on his own. Over
the next few days, when R is out at work and I am home alone on the sofa I
make, in a frenzy of sheer desperation at the state I am in, some phone calls
which must be highly distressing to their recipients, as they are simply
lengthy howls of pain and despair (Kathleen, Gill,
Lynette, Clare, Sue - sorry about that, and thank you).
R just asked me what I am writing
about today, and I said ‘the days after my operation’. He grimaced at the
recollection: ‘Those days seemed much worse than anything you’ve been through
on chemo’. He is right – but it’s hard to transmit the full flavour here,
because I wasn’t capable of writing anything down at the time; I was much too
busy vomiting, repeatedly.
I remember those days now as through a glass, darkly; it’s
probably just as well the detail has been blurred in the interim. Looking back now,
though, I just think how extraordinarily lucky I was, in the first few decades
of my life, never to have encountered this level of physical trauma before; it happens to people all the time, but somehow I managed to skate
through into middle age with persistent coughs, and a single bout of pneumonia,
as the worst I’d ever experienced, physically.
Which is another reason for not saying ‘Why me?’ When you've had such outrageously good luck for so long, it would really be rather churlish to complain just because it's finally run out, wouldn't it? Human existence is all
about suffering, after all – I just seem to be collecting my ration all in one
go.
During this horrible week my breast, ironically, doesn’t give
me any problems at all: the operation has been successful and without
complications, the pain is minimal, and it just sits there healing quietly - albeit literally black and blue, black from
the bruising and blue from the radioactive dye - under the surprisingly
small dressing until such time as we are due to go back to the hospital for Mr
H. to check on it.
And to give us the pathology results.
The all-important pathology results will tell us how big the
tumour actually was, whether it had clear (i.e.
cancer cell-free) margins of tissue around it and what else they might have
found there, or in my lymph nodes.
Whatever is predicted by the doctors on the basis of the mammograms
and ultrasounds, and then the biopsy results, nothing is known for certain
until the tumour has been removed, the lymph nodes examined, and the pathology
results are in: this is one of the most difficult aspects of a breast cancer
diagnosis, that the bad news – and there very often is more bad news – is drip fed to you, slowly. It’s not the fault of
the doctors, it’s just the way the information slowly unfolds itself as
different levels of technology are applied to finding and then removing the
tumour, and then determining whether or not it has already sent out raiding
parties to start colonising other parts of your body.
12 days after the operation, by which time my physical state
has improved considerably, and my mental state very little, we have an appointment
at the Breast Clinic to see Mr H again. It
is time to move on to the next stage of the proceedings, and see if there are
any more surprises in store. We are reasonably optimistic: mine was an early
stage, not particularly aggressive cancer, and the tumour was not a big one;
the doctors thought it was unlikely to have spread beyond my breast. With any
luck, this will be confirmed today, and then it will just be 3 weeks of
radiotherapy on the breast, to ensure that nothing nasty is left lurking in the
area where the tumour was, then 5 years of taking a Tamoxifen tablet every day,
over and out.
Simple.
We sit in the waiting area of the breast clinic, holding
hands, until Mr H comes out and ushers us into his office. As we sit down,
someone else comes into the room: Vanessa, my Breast Care nurse, aka the Angel of
Death. The first time I saw her, on the
day of my diagnosis, was the moment when I realised that I had cancer, even
before being told, because her presence would have been redundant otherwise.
When I see Vanessa my body immediately goes into hyper-alert
mode, whilst my mind starts ricocheting in panic around the walls of my skull OhmyGodthere’sVanessashe’sonlyhereifit’sbadnewsistheregoingtobemorebadnewsohGodwhywhywhyisshehere?
Mr H is his usual charming self, and tells us how pleased he
is to say that the margins around the tumour were entirely clear, which is
excellent news (if they hadn’t been, another lumpectomy or even a mastectomy would have been necessary).
R and I, sitting close to one another and still holding hands,
simultaneously breathe a huge sigh of relief and relax, just as Mr H continues:
‘However….’
NOOOOO!!!!!! STOP THERE, WE DON’T
WANT HOWEVER, HOWEVER IS THE VERY LAST WORD WE WANT TO HEAR.
We do not want a conjunctive adverb
here, Mr H, thank you very much; we just want a nice plain full stop, if that’s
not too much trouble.
But it’s useless.
With the reappearance of Vanessa, and Mr H’s wanton use of
the conjunctive adverb ‘however’, my brain is now taking in two signals that
something else bad is now looming on the horizon, that something wicked this
way comes..
It only remains to find out just how bad the new bad news is
going to be.
