When I woke – after the immediate feeling of relief that ‘It was only a dream’ – I realised that this is a variation on my recurring dream/nightmare scenario. It usually follows this story: I am about to give a reading/lecture/talk somewhere, and arrive to find I have left said lecture/talk/reading at home. Or, I’m on my way to the event, and suddenly I’m three hours late for it. Or, I turn up on time, with the briefcase actually full of notes/books, but no one is there to hear me. Or, I’m doing O level history or A level English, and as I write, the words erase themselves on the page in front of me. Or I suddenly know nothing about Othello during the same, not even the name of his trusty lieutenant, doesn’t his name start with an ‘I’? Poems actually extending themselves, and becoming unreadable in process, is a new one to me. I wonder which variation I’ll be subjected to next.
Wednesday 31 May
My last day of treatment.
A bright sunny day, much warmer than of late.
The day began comically, with me meeting Rory in the street and asking how Shimi was. ‘Yup, happy to see him later,’ he said.
‘He’s in your house right now.’ I said. ‘He was over for a sleepover last night.’
‘Oh, was he?’
‘Yes, with Sam.’
‘Oh, OK then. Right.’
As we knocked on Dawn’s door for our lift I handed the fiver I’d promised Shim, for his lunch, over to Rory, through his door.
‘He’s not actually here, Ant.’
‘What?’
‘Well, it’s just Sam in his room. I’ve just checked.’ Cue general panic, laughter from Dawn, and Tatty striding back to the house to check Shim’s bedroom.
By the time she got back Rory was in the doorway again.
‘Sorry. Got it wrong. He was there after all. Fast asleep. Under some covers.’
Gillian wondered why we were so late, so we had to tell her.
‘It’s half term, so they’re out at friends’, we began nervously.
She lost no time afterwards telling me that the ‘bum-fluff hair will have to go. It comes back much quicker if you shave it,’ and that I looked ‘not nearly as bad as a few weeks ago, loads more colour you’ve got.’ This wasn’t as bad as Felicity Carr waking me up from my Piriton-snooze later on with the words ‘You’re still a bit pasty aren’t you?’
It was nice to see her. I’m seeing her next on the 13th, one week after my scan. ‘This time we’ll get it written properly, not reported on quickly,’ she beamed.
‘Depending on what it says, we can then hopefully take your hickman line out,’ she said.
It will affect everything, not just the summer and the hickman line. If it’s shrunk to vanishing point, then my treatment is over, bar a final check-up PET scan in London. If it hasn’t, I could be due even more. I can’t think about it.
Friday 2 June
A warm day. Shim did the lawn for a fiver (‘Can you pay me now, please?’) and I managed to edge one half before exhaustion set in. The stand-in research nurse on Wednesday said I can expect energy to return ‘not before 6–8 weeks, really.’ That’s fine. It’s better to know. She also said that aching joints are normal for this stage of the proceedings, ditto muscles. Which explains the knee-pain, quite different from the Big Bone Pain of the GCSF days. Diarrhoea a presence, but easing off today, perhaps for good (?). Everyone delighted with my improved, that is, absent, cough. Finally learned from Duncan (Karl is still off ‘hunting rocks in the sun’, but Gillian’s demeanour suggested he still wasn’t well) why they give you steroids. ‘They’re anti-inflammatory. Basically, we give them to you as part of the chemo. If we gave you nothing else they would work for a while, in other words shrink the tumour. But it would always come back. It needs to be given in combination, ideally, for it to work for good.’ Something Karl said to me in February returned, about very old patients just being given steroids, and nothing else. I’m guessing that this would be very much a holding treatment, but Duncan didn’t really go into this. It’s funny, now I’m almost done, I actually find I’ve got a mind to concentrate on what’s been done to me.
Sunday 4 June
Yesterday evening we all piled into the Bongo and went off to Budleigh with Robyn and Rory for fish and chips.
We sat on the shingle and watched the mackerel-anglers chasing suddenly materialising shoals, which appeared just under the surface as though an invisible child had just flung a handful of pebbles into the flat water. We queued for nearly an hour for our food. The fish was hot, in batter that was both crunchy and melting. We ate with our fingers and lobbed stones at the point where the waves met the shore hoping for a satisfactory plop. We drank lemonade and ginger beer from the can, brands which none of us had heard of.
Later, I quizzed Robyn about her treatment, as the children sloped off towards the cliffs.
‘Robyn, did your fingernails go all wrinkly like mine have?’
‘Completely,’ she said. ‘You could spot each treatment pulsing through, like a wave.’
‘And how often do you get checked up on?’
‘Every six months at the moment, but soon it’ll be a year. The thing is,’ she faltered at this point, tears beginning to prick her eyes, ‘It actually gets worse the further you move away from it. I’m two years clear at the moment, but nearly the whole time I’m thinking ‘What happens if it comes back?”
This had the effect of shutting me up, at least momentarily. Then we pondered together, the four of us, the outcome of my scan on Tuesday, and the prospect of recovering in warmer weather, and about returning to work: ‘Don’t do it until you’re absolutely ready. You won’t feel normal again until October anyway,’ Robyn said.
Monday 5 June
Other little signs of ‘getting better.’ Tatty reached over for a snog last night and as rapidly called a halt to proceedings claiming she’d got a rash from the stubble on my chin. ‘You’ve got hair!’ she exclaimed. ‘When was the last time you shaved?’
‘Three days ago?’ I said.
‘Well, it’s growing! And don’t tell me, I know what’s coming next.’
‘What?’
‘That it’s not all that’s growing,’ she said, pretending to be me sounding dirty.
While I’ve been ill the fridge-magnet-poetry-fairies have been at work. Some of it wouldn’t look out of place in the more experimental poetry journals:
the frantic rainy sky is
always swimming above her head
There’s also great nonsense to be had:
top love is played by my blue cooking rock
and lusts for white forest milk like dresses chanting
winter moans
Which I think has a certain lyrical grace underneath the madness. Who is the author/culprit?
please wax me
reads one contribution towards the lower part of the door, and, just above it
lick hot delirious hair in summer.
The giveaway, one of the first lines to burst onto this scene reads:
for a moment I could
watch the enormous pink
breasts
Was it John Ashbery sneaking in one night, or the ghost of Kenneth Koch? I think it was Shimi announcing the beginning of his puberty, aged 11, possibly with the help of friends as they raided the cupboard for chocolate milk.
Tuesday 6 June
Scan day.
Am sitting in the kitchen with coffee having had an early lunch. Am not allowed to eat from 12 onwards (8 minutes’ time). Have taken the same disgusting drink as last time, Gastrografin. It’s very aniseedy; you need a good go of mouthwash afterwards. In my scan-letter it said they’re going to do the following:
CT of the thorax with contrast enhancement
CT of the abdomen with contrast enhancement
CT of the pelvis with contrast enhancement
This is two more (pelvis and thorax) than last time. It must be a) to check the tumour has shrunk/disappeared and b) to double check it hasn’t spread anywhere else.
I do hate lying there and feeling the hot knife of the liquid surge through my body, plus the simultaneous feeling of being about to throw up and shit myself. The clipped ghostly tones of the voice inside the polo (‘Hold your breath please’ – pause – ‘Breathe away normally’) are fully sci-fi, as though from a story by a child imagining ‘Doctors in the Future’.
I’ve taken the required 400 mls of water-mixed-with-Gastrografin, and can report that the final mouthful nearly made me throw up. I had to run (not easy) up to the bathroom to get to the mouthwash. Close. They say in the letter that it’s a procedure which doesn’t hurt and has no side effects. True, but I feel this doesn’t cover it. The boredom of waiting, the talking about nothing to your spouse, the sitting with other bald patients in their gowns in the corridor, the boredom of waiting. On one occasion an old woman sitting opposite me in the waiting room nearly revealed all, by accident, as she bent over to pick up her shoes. She hadn’t done her gown up at the back, so the thing fell down over her shoulders. Had her friend not reacted so swiftly we could have all been in trouble. The thing was, I remember the look of utter indifference in her eyes, as though to say ‘I’ve suffered so many indignities already, what difference will it make if you all see my breasts?’
More rage today about cancer-language. I was channel hopping after Frasier and caught Lorraine Kelly interviewing a 24-year-old woman about her breast cancer. (It turns out she is the subject of a documentary tonight on ITV, one of those fly-on-the-wall films which follow you for a year.) In the clip I saw she discovers from her consultant that she does, indeed, have the ‘rogue’ gene that many other women in her family carry and the (male) consultant touching her arm and asking if she is all right. Despite being the news she has expected, it is clearly traumatic: she has already decided that if she carries the gene she will have a double mastectomy.
My problem is with none of these people; it is with the programme makers. As we see the woman walking down the corridor to the consulting room (with her mother, who has also had a double mastectomy) the voiceover intones: ‘This will be the moment where Becci discovers whether she has the gene lying in wait for her.’ It’s the ‘lying in wait’ I can’t stand.
Only cancer makes us react in this way. We don’t talk of the common cold ‘lying in wait’ for people, or sore backs, or a sprained ankle. So why cancer? Of course, it’s because we’re terrified of it, though, ironically, closer to a cure for it than we are able an ‘invisible’ enemy force, almost as if we are talking about guerrilla warfare or Iraqi insurgents. We can’t defeat it or understand it, so it follows it has to be demonised.
Cancer-books are no better. For the first time since my diagnosis I went on Amazon yesterday and browsed book titles on the subject. I noticed two things: first, that the market is overwhelmingly geared towards women (the subject of breast cancer is by far the most common); and second, that it appears to be the duty of the reader to ‘beat’ the cancer themselves. (The word ‘beat’ is not made up: it comes from a book called Eat to Beat Cancer: A Nutritional Guide with 40 Delicious Recipes.)
I’m not too surprised by the feminine angle of much of this literature. While I did find one or two books on prostate cancer, it simply appears that women are either better at talking about cancer than men, or perhaps that they just want to talk about it more than we do. This might be borne out by the fact that, the afterword in Ruth Picardie’s book notwithstanding, I have found only one cancer-memoir (so far) by a man, John Diamond’s C.
I don’t really blame the publishers of books with titles like Beating Cancer with Nutrition: Optimal Nutrition Can Improve the Outcome in Medically-Treated Cancer Patients: we all have to pay the mortgage. But I detest the war language in the above and in titles like The Plant Programme: Recipes for Fighting Breast and Prostate Cancer. As if the poor patient reading these hasn’t enough on their plate already (sorry). Not only do they have to ‘be strong’ and ‘fight’ the disease they suddenly have to become top-drawer cooks sourcing purely organic produce.
In the Top 30 of Amazon’s cancer books I counted, in the titles alone, two uses of ‘overcoming’, three of ‘beat’/‘beating’, the same for ‘fight’/‘fighting’, and one each for ‘struggle’, ‘tackle’, ‘arsenal’ (as in ‘the natural arsenal of disease-fighting tools’ – yum), ‘challenge’ and, finally, ‘outsmart’. What are we doing here? Outwitting Al-Qaeda? Scaling the south-west face of Everest? No, we are being treated for cancer. The most sane-sounding book I found was simply called What to Eat if You Have Cancer: A Guide to Nutritional Therapy, not a struggle or a fight in sight. I nearly went on 1-click just to register my approval.
By far the most common word used in the top 30 titles, however, was ‘prevent’/‘prevention’, often in conjunction with the word ‘plan’, as in ‘prevention plan’. To my mind, if you have shelled out £14.25 for Everything You Need to Know to Help You Beat Cancer: The Ultimate Guide for People Who Have Cancer and Everyone Who Wants to Prevent it, you either a) already have cancer and want some help with understanding it b) are convinced you are going to get it anyway and are actively looking for signs of it or c) fully subscribe to the idea that it’s your responsibility to be cured of it and are secretly ashamed you contracted it in the first place. The thing is I’ll bet most people who get cancer aren’t really looking for it and don’t know what the signs are. And while this book is probably extremely useful (why the ‘ultimate’ guide? Why not just ‘a guide?’) in detailing symptoms and signs, it has a nasty whiff of judgementalism about it. Who wouldn’t want to prevent cancer? It’s almost as if the book is daring you not to buy it.
And yet, I haven’t, and won’t, and nor will millions of other people, some of whom will get cancer and some of whom won’t. Does this make us worse human beings? Such book titles imply that it does, which, taken to a logical extreme, almost implies that we deserve it and that we only have ourselves to blame if we don’t recover. I’d rather read Chemotherapy and Radiation for Dummies (I’m not making this up): it feels more honest.
Wednesday 7 June
After the scan yesterday we raided the kitchen: toast and tea (Tatty) and cold boiled potatoes and hollandaise sauce (me). My hunger-cravings are one of the more unpredictable aspects of this whole business. And yet if you asked me was nausea one of the main side effects of chemotherapy I’d say no. What chemotherapy has done, most certainly, is change the way I sense food, that is, remember its taste, texture and smell and the way I desire it in the same ways.
Most acute of these experiences has been smell. Coffee. I couldn’t bear the smell for weeks. Bizarrely, bacon of all things would also have me leaving the room (I cooked some for Bendy and Ellie for supper last week, and it was fine.) The worst smell of all, however, was that ‘freshly baked bread’ aroma which supermarkets and sandwich shops seem to pump out at will. Once, I nearly gagged in the foyer of the hospital opposite their bakery; and last week on a first-thing-in-the-morning trip to Spar for milk I was practically out of the door before I’d even walked in. I think in both cases it’s more that they’re heating up pastry (i.e. not just bread) that’s been pre-cooked which gets me. It’s sickly, slightly sweet and heavy: for some reason I can’t help associating it with cold-ache injections in my arm and moving stiffly down corridors.
Later
Some things I will admit to:
feeling a mixture of anxiety and anger going to church
and answering everyone’s questions
every week
especially when they say things like
‘You look like you’ve got some colour
back into your cheeks, not like last week
when you looked so grey’
and remembering what they said then
and it was
‘You look really well’
feeling nervous at the school gate
and wishing every day was sunny
so you could cover up in baseball cap
and sunglasses
/> and avoid eye contact
the loveliness of the days
now I’m more conscious
i.e. not in bed all the time
and the visitors have dried up
the merest hint of irritation
watching Frasier
the last two mornings
the unthinkable thought
that it might not be as hilarious as you thought
the almost permanent feeling
of horniness
the guilt
at not having done bedtimes
with the children properly for four months
the wave of inertia that hits you
now you have resolved
to begin doing stories and praying again
the guilt of this
as you watch another recorded episode
of Without a Trace
Sunday 11 June
Love for Now Page 15