We have recently celebrated Shim’s birthday. He opens his presents like Daddy, extremely slowly, taking in each word on every card, fingering them carefully for cheques. We took them (Shim brought Sam) to Harry’s for supper. Shim put all four of his green chillies from atop his chilli con carne promptly into his mouth as an act of bravado. He spent the rest of the evening guzzling water, sweating above the lip, and saying he was fine. For pudding we all shared a Harry’s Heart Attack. This comes in a six-inch deep, four-inch wide goblet. In layers from the bottom are: chocolate brownies with chocolate sauce; chocolate ice cream; vanilla ice cream; marshmallows. The whole edifice is topped with squirty whipped cream and two flakes at 45° like devil’s horns. Sad to say, in spite of Sam’s late bid for the dregs, that we were defeated.
I joined them slightly late, having fulfilled my duty to talk at book group about If Nobody Speaks of Remarkable Things by Jon McGregor (my choice). I was relieved to find that it went down universally pretty well, with most people saying things like ‘it is beautifully written’ and ‘I haven’t read anything like it before.’ I did wonder afterwards if people were being generous on account of my illness. Let’s agree with him in case he dies.
To Spencer and Maura’s, for Spencer’s birthday supper, cooked by Spencer in the Sephardic Jewish, i.e. Middle Eastern tradition: potato salad with spring onion and salted lemon; orange segments with cinnamon; roasted peppers; and then for the main course, roasted lamb, and couscous with dates, raisins and almonds. For pudding (‘I did this, Spencer doesn’t do baking: it’s a male thing’) yoghurt cake, with orange syrup and fruit salad, and pudding wine. As Maura handed out the glasses she made sure Tats and I had the pair which said ‘To Have’ (mine) and ‘To Hold’ (hers) ‘which is what I feel you’ve been doing recently.’
We gave her my new book and a ‘DJ Ant’ compilation. She insisted I read one before supper, so I read ‘The Surprise’ because I like the ending: ‘Your life a garden bench/left out/facing all weathers.’
I sat next to a woman I’d not met before (Lewis and Maura from down the road were there and were sweet and solicitous) called Megan. After hearing (or enduring, most likely) the monologue for a little while she said the usual things like:
‘You look incredibly well’
‘You’re amazingly brave I must say’
‘I’m sure you’ll be all right’
and then something very brave and insightful which no one has dared say which was: ‘Well, sometimes we need a little kick. And maybe this is yours.’ She’s right, I’m sure of it. If I don’t get on after this and finish the novel and short stories I’ve got planned I really will only have myself to blame.
Tatty’s school got the ‘brown envelope’ call from Ofsted on Friday: they arrive on Wednesday for two days. Hurrah. Tats already glass-eyed and monosyllabic with tiredness (I can hear her on the phone downstairs to a friend from another school, a PE expert, planning a lesson with his advice). Thank God for Kari jumping into the breach with tonight’s lasagne and Ben and Jerry’s Fossil Fuel (a bit like a Harry’s Heart Attack, Shim said) tub of ice cream. They are still giving her Wednesdays off to be in hospital with me, but she will have to charge back straight away afterwards, as soon as I’ve been Rituximabed. That leaves Thursday for being observed: she’s convinced they’ll watch her Henry VIII lesson, which she prepped for yesterday by watching David Starkey. The kids have to write an essay arguing whether Catherine of Aragon loved Henry or not. Deep stuff. Listening to her I again had the feeling that I was in the presence of one of those rare teachers you never forget. My A level history was not this alive, nor as interesting.
Big Bone Pain in the morning and now this evening. My thighs are hairless, as are my arms (never very hairy, more downy). I noticed this evening that half my eyebrows seem to be missing, the further away from the centre of my forehead they grow. My fingertips have tingled for nearly a week: not painful, just a warm-electric shock kind of feeling. Bowels: erratic. What the codeine (cough mixture) gives (constipation), the GCSF/antibiotics take away (diarrhoea). Weight: hovering around 13 stone, but not dipping below it, as it threatened to just after Easter. Still having that lower back pain which kicked this whole thing off. Am prepared to ignore it. For now. But I do want answers. Fingernails: curving, some with valleys in them.
I lay on Shim’s bed with him the other night, after his story, talking to the ceiling.
‘How long have you been ill, dad?’
‘Don’t know. They think since last summer.’
A pause.
‘Almost a year?’
‘How do you get it?’
‘They don’t really know. They think that the lymph nodes fight off another illness and that for some reason, one cell in the lymph nodes starts growing. Like it receives a bit of energy, perhaps from radiation, or genetically – they don’t know – then it starts splitting and growing and growing, and soon it’s a tumour.’
‘Is it just bad luck then?’
‘Yes. Just really bad luck.’
‘Is there anything you can do not to get it?’
‘Not really.’
‘But you are getting better?’
Tuesday 16 May
England drew in the end. Just couldn’t bowl Sri Lanka out. I listened to the whole thing on my fab Roberts Radio, in a mixture of rapture and apoplexy. Lovely sound, very warm. Some great howlers: Blowers calling Monty Panesar Monty Python; then Lord’s the Oval. It must have been Alec Stewart putting him off. I love his one word sentences. ‘And. There. Is. No. Run.’; ‘My. Dear. Old. Thing.’
Fred Trueman, the greatest English fast bowler etc. etc., has cancer, according to Test Match Special. As soon as they announced it, solemnly, by Christopher Martin Jenkins, I began laying bets with myself about how long it would be before they said ‘… but if anyone can fight this, Fred can.’ It took just two seconds. I timed it. And they used those exact words. (It wasn’t clear whether CMJ was reading a Yorkshire CC press statement, or merely voicing his own opinion.) A friend who has myeloma reported people saying exactly the same thing to him. Why do we insist on the language of fight when talking about cancer? Is it that we resort to it in Fred’s instance because he was a fast bowler of incomparable fiery-ness? Or that to not say ‘he will fight it’ is somehow to question his moral/physical strength/courage, thereby letting him down? Again, I nearly wrote in. But no.
Thursday 18 May
8.30 pm
Day after my penultimate treatment.
What a difference not having chemotherapy makes. Yesterday it was just – just! – Rituximab, a nice Piriton and Paracetamol chaser to take the edge off, and away I went, stretched out on a bed with my Walkman in la-la land.
Duncan decided to put me back on antibiotics, as he heard something in my chest. This time it’s a double whammy of Augmentin (horse pills, three times a day) and Doxycycline (once a day). Duncan says that if it isn’t clearing up by next time (two weeks away), they might get me looked at by a sinus man. ‘It’s basically like a puddle in there,’ he said. ‘It has nowhere to run off to as it’s a self-contained system. But first things first, eh?’ Which is as pithy a summary of the whole cough/snot saga, and their view of it on the scale of importance, as anything I’ve heard from anyone.
A feeling of total joy – I actually punched the air – this morning lying in bed and waking next to Tatty. When was the last time I did this? Like a normal chemo night (I suppose not, when you think that I suddenly had no steroids zinging round my system) I lay awake and so crawled off to watch the Frasier I’d recorded (The One Where They Go To Car Maintenance Class), came back, headed off a coughing attack with some codeine, then, er, slept. And that was it. Next thing I know, Tatty was shouting ‘well done, you did it.’
Some new terminology from yesterday. The ‘ripples’ on my fingernails – horizontal grooves or miniature valleys – which appear weeks after each chemo treatment, are called ‘beau’ lines. No one knows why.
‘That’
ll be something to take to your dinner party,’ said Gillian.
I’m still amazed by Tatty’s forbearance of these days at the chemo-face. Apart from the fact that all the attention is on me and that there’s loads of ill people attached to drips and bags of blood (I noticed a very thin – and quiet – Geraldine in the far corner of the ward, a shadow of what she was even a month ago, and she looked rubbish then) it must be so dull knowing that within ten minutes of the Piriton kicking in that I’ll nod off and remain that way for 2–3 hours. The big difference yesterday was Ofsted paperwork. Very kind of the school to let her come at all. The results are in: they dropped points on only one ‘cell’ (assessment, I think) and were otherwise fine. The unofficial line is that for a school ‘with “notice to improve” (Stalinist jargon) they’ve done well; are, in fact, “an improving school.”’ So while they’re getting better, observably, they’re now also being told that they need to get better still just in case they think they’ve improved enough and can start coasting.
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.’
Sunday 21 May
Morning
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.’
Wednesday 24 May
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.
Thursday 25 May
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.
Friday 26 May
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.
Sunday 28 May
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.
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