Authors: Anthony Wilson
More hospital dates. Final CT on June 6th. If it’s a good one (i.e. even more reduction of the tumour) then I’ll have a PET scan late on in the holidays, possibly September. If it isn’t so good (i.e. there’s the possibility that it may still be alive, or that it hasn’t shrunk enough) they’ll send me up for the PET quite quickly, to make double sure. It’s never over till it’s over.
Meanwhile, I’m booked in for my ‘rainy day’ stem cell harvest (just in case) at the beginning of July, for four days, 3, 4, 5 and 6, which will mean taking Granocyte/GCSF injections for a day or two beforehand, to boost the white cell count once more. A general air, in all these conversations, that I am moving towards the end, but that no one is counting their chickens.
As Jay put it on the phone today: ‘The light at the end of the tunnel might not be an oncoming train.’
Sitting propped up in bed with Tats, a breakfast tray at my feet, while she does the crossword in
The Week
. Bliss. Outside the rain it raineth.
Last night we watched the Eurovision song contest (the UK came 19th) with the kids. We scored each act, shouted at the telly, laughed, the whole shooting match. The act I ironically used my ‘
dix points
’ for – Finland: six figures in
orc-gear, invisible behind their toothy masks – won the thing by a street. The song was called ‘Hard Rock Hallelujah’ and was really a case of so-bad-it-was-good.
Wogan’s commentary on the whole thing is still one of the broadcast marvels of the year. He takes you through the voting in particular with the driest of injections. ‘Here come the Ukraine votes. Let’s see if they have anything to spare for non-neighbours.’
A rare visit to the kitchen to do some writing. And that’s the odd thing. In spirit I’m feeling good, that the mojo is coming back, as Tatty puts it. And perhaps she is right: last night I cooked the family meal – garlic and pesto chicken, with lemon and cayenne pepper; roast new potatoes with rosemary; asparagus wrapped in parma ham (‘Two nights in a row’, Shimi pronounced) – while listening to a funk CD. Could you have a more emblematic picture of good spirits?
And yet: there’s a dreadful nagging ache constantly in my knees (I wonder if it’s from all those cough-episodes, curled up on the sofa), and a feeling that my calves are now made of water. So: I can keep up with Shimi on the school-walk, am not breathless when I return, but still need to lie down when I do because I hurt everywhere. It’s as though my mind is already back on the bike while the rest of me still needs to sleep for two hours in the afternoon. Maybe I should listen.
I’ve noticed I’m able and want to drink coffee again. Only a cup a day, mind, but it’s surely something. No pesto-reaction last night either: I deliberately put in quite a lot of cayenne to see if I’d get that burning reflux up and down my gullet, but nothing. All good signs. Next I’d like to aim for a nice cheese sandwich (or on toast), but have a feeling that this could still be a couple of weeks away, so synonymous is it with hospital eating (it’s what I took with me on the first treatment), and, therefore, feeling sick.
An interesting thing re the fatigue. Tats said that even in the last stages the chemo, when I was at my lowest ebb, Carol only ever scored me as a 2 out of 4. (I never see what she writes as I answer her questions.) I asked her what a 4 stood for. ‘Totally incapacitated,’ she said. It’s all relative. For Anthony Wilson, previously fit and healthy, that’s what it’s felt like. For a seventy-two-year-old living on his own or with his dog in Crediton it’s going to be a very different story. You’ve got to be thankful.
Another interesting fact, which Duncan talked me through: blood-splinters in your fingernails. You get them as signs of the body having had an infection. The blood vessels being at their smallest at the end of the line – the fingertips – they ‘explode’ or ‘leak’ into the fingernail, appearing as splinters: little dark streaks of blood below the surface of the nail. If you have six or more at any one time, it’s something to worry about. Duncan counted four on me (though today, one week later, I can only count three). ‘It’ll be your chest, and, possibly, your sinuses, that’s what it’ll be,’ he said. ‘Though, as I’ve said, if we can’t knock the cough on the head this time, we’ll just have to wait for your immune system to catch up. Ditto the sinuses.’ The cough, for the record, has been very well-behaved. A tiny episode last night at about 1.50, but the codeine dealt with it. Otherwise, of late I’ve had six out of seven nights waking up in my own bed. Miracles can happen.
Sitting up in bed, Sri Lanka 69 for 6. First sun after days of rain. Henry Blofeld has just described Hoggard running in as being ‘like a man trying to push himself through a wall’, and Monty Panesar chasing a ball at cover as having ‘rather a prancing run, like a horse doing dressage.’
This morning I watched
Frasier
, as usual, (The One Where Ros Sacks Frasier From Doing The Voiceover On Her Space
Documentary) then David Attenborough from last night on global warming, then a recording of
The History Man
. The Attenborough was, like
Planet Earth
before it, urgent and elegiac towards both its subject and its medium. At one point, in a sequence where we see him being driven round London in a black cab, he voices his concern for his own contribution to global warming, ‘having travelled all over the world to make the films I did.’ Not many presenters voice their guilt publicly in this way.
The programme ended with Attenborough talking to a prof from the Met Office (Dilshan has just gone, caught at first slip by Trescothick, moments after Gus Fraser had set them the target of 200) and creating a graph of global warming on the floor of the Turbine Hall of Tate Modern. This did not seem to be overstating the case.
Can you ever say final? Is this ever over? I realise both my desire for it to be so, and my terror at the prospect, at being defined not by being ill any more, but by being, well, me, my ‘normal’ self, pre-disease, Anthony, who cycled to work, stayed up late and liked a glass of wine. Is that who I am? I had my first glass of red this week (with Pug), and, tonight, my first glass of white. If I stay up late, it’s because I’m being kept awake by coughing. And I can’t even get up the stairs without a sit down. But is that who I am? And if I go back, say, tomorrow, to my ‘fit’, able-to-drink-and-stay-up-self, is that who I am any more? I realised today, as I muttered inwardly at some minor impatience with the children, that I am very likely to go back to being just as selfish – and lazy – as before. Having had acres of time to waste, in which all I’ve done is do the school-walk, watch
Frasier
, rest, make a sandwich, rest, buy a bun for the children and do the school-walk again, I’m now terrified at the thought of having it taken away from me, especially by the idea of work – not
writing, I mean
work
. And I can project into the future enough to see myself reacting as I always have under pressure to do the things I’ve really always wanted to do but never really done, write novels and short stories and plays, which is to procrastinate while inventing excuses about papers which need writing, etc. The thought that I am going to get better and have to face the moment when I’ll have to get on and do it, for better or worse, really scares me. Not as much as dying. Or having a relapse. In that context, you’d think I’d have no choice but to bloody well get on with it. But I do know myself; and I know I can lie to myself pretty effectively, outwitting that ability – and desire – to lie, not using ‘being tired’ as an excuse not to write is, after getting well, the main challenge from here on in. I will only have myself to blame.
A very poetry nightmare last night. I dreamed I was reading the new book out loud to Michael Laskey and Naomi Jaffa, with various family members walking in and out while I did so. So far so scary. But the thing was, as I got to the end of each poem, more words kept appearing at the end of the page, like re-drafting in reverse: instead of taking words away, honing the poem, they got more verbose. This happened to ‘People in the Life’ in particular, I remember. It was like wading through fast-setting concrete, a feeling of utter panic and defeat. The look in Laskey’s eyes was a mixture of compassion, and concern that I’d clearly lost my touch. He was too polite to say anything afterwards, which isn’t really like him.
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.
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.
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.
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.