Love for Now (13 page)

On the ironing board as I went through the polo was nearly sick again as they injected me. That warm feeling going down your whole body: I’d forgotten that simultaneous wobble in bowel and gullet. They said that they’d know the result today – tomorrow at least – but that it wouldn’t get reported on till later because of a recent backlog. But that if I wanted to ring up by Thursday, that would be fine. ‘It being Easter week is another potential hold-up.’

Took the H2 bus back to Magdalen Road and Tats treated me to a fry-up at the café. Was alarmed to note – about two mouthfuls in of my bacon, egg, beans, fried bread, tomato and a sausage – that I couldn’t taste any of it. Nor my very large latte. Wolfed the whole thing anyway, then two rounds of toast and marmalade, of which I got just a tingle. Wondered if this is a side effect of the chemo – it can happen; or whether it’s one of being bunged up still with a heavy cold; or one from the scan: they do leave an odd metallic taste on the tongue. My tastebuds seem to have recovered during the rest of the day, enough, at least, to sample my avocado on toast (for lunch) and an apple. Shim came in later with chips after swimming with Jason and I certainly tasted those. Not surprisingly, given how much salt they’d shaken on. But a chip is a fine thing, cancer or no.

The drive yesterday up to Colislinn. We packed up the car in our usual way, a bit chaotically washing and emptying vases, asking Ray to do the bins, raiding the fridge, eventually leaving around midday just as it started to spit with rain. I did the first section up to beyond Birmingham somewhere, Keele, at a guess, then Tatty took over for a glorious run in the lakes, sun out in force, blinding glare from field-puddles and swollen streams. As Tatty drove I realised I’d never really
looked
at the countryside either side of the motorway through Cumbria. The hills, of course, yes; but I mean the lower flatter more rolling bit between Shap and Carlisle. Not as dramatic, but in the beautiful bleak light, with its own majesty.

I didn’t let on, but the driving was agony. We stopped about half an hour after Bristol for a latte and a panini. Sitting there waiting for the food to arrive, watching a businessman tuck into a double bacon burger with fries, I felt distinctly woozy and that turning back was the only option. Kept awake by chewing gum and eating all sorts of munchie-goodies bought by Tats at the petrol station. Realised that I only really tasted
the cheese and onion crisps: everything else was slightly floury. Had the same experience today at breakfast. Charlotte has brought some Highland heather honey. It barely registered, smell or taste. Ditto her mindblowing Lavazza, which I only got a whiff of when I added sugar to it. So: I still eat like a horse, but increasingly so, little of it seems to make any dent on the taste buds. Is it the chemo or the cold?

Side effects update: lying in the bath yesterday before packing up I noticed my pubes are vanishing. Where there was once a lavish bunch of parsley, there is now a rather bare copse, full of stragglers.

I also noticed my leg hair has gone AWOL. At least, only calf-hair has, on the outside flanks. My muscles now look shaven, like a cyclist’s. Lying there I thought I’d try and pull a few chest hairs out to see if they would come easily. I didn’t even need to tug.

As we did the section of the A7 after Langholm I had another good look at the hills. Everything sodden and brown and trying to become green again. I realised I hadn’t looked at these for years either. Then the awful dawning in my stomach, more of a terror, really, that I wouldn’t live to see them again. That the treatment wasn’t working and the tumour has not shrunk. A really quiet voice inside saying,
Take your last look
. Awful. I’ve not had that before, not during chemo, not lying awake at night, not on one of my coughing or diarrhoea trips, that sense of impending death. But I felt it yesterday, strongly, for the first time and it scared the shit out of me. Tats said ‘I won’t put you under pressure to ring them for the results. It’s entirely up to you.’ I’m not sure now if I can face it.

A day of pain, and gifts, too. The pain: just that continuing jagging feeling in my side. It had seemed to disappear
when treatment commenced, periodically resurfacing for the odd morning or two, but nothing serious. Then, since the end of last week, and especially over the weekend, it’s been there, throbbing quietly, a reminder of how the whole thing started. It might of course, be psychosomatic; or a sign that the tumour really is shrinking: it’s-hurting-therefore-getting-smaller kind of thing. Which I’m not even sure is logical.

And, post antibiotic-induced diarrhoea, bad constipation, a definite tightening and lack of fluidity.

But Tats says my cold is much less runny and my cough far less noticeable. It’s true: no fits to speak of for two nights now, and only a handful of phlegm-hacks each day. Perhaps the virus really is taking its leave.

The gift: a state-of-the-art Sony Walkman MP3 player in the post from Pug and the boys with a 6-Gig capacity. (None of us know how many songs this is, but Bendy and Nell think it’s more than 300). Stunning of him to get it so right, and also for organising it so beautifully. He also included a £30 cheque towards ‘downloading fun’: top man.

Spoke a moment ago to H on the phone and we swapped notes. His story, my story. He has tons of pills to take at home, no injections. ‘I’m very lucky,’ he kept saying. One of these is Cyclophosphamide (same as me), another is the famous Thalidomide. He forgot the third. His chances, he has been told, ‘are more Chelsea than Sunderland.’ He’s got plasma cytoma, which is a lot better than its fast-spreading cousin, plasma myeloma, so it sounds like they caught it early. ‘And I was only going to see the doctors about something else.’ Where have I heard that one before?

Have been reading (golly!) a couple of articles in the
Poetry
journal Jean sent me. One, by Tony Hoagland, on ‘Fear of Narrative and the Skittery Poem of our Moment’, really caught my eye. It will be worth photocopying and sending to Andy, maybe even Rupert, if I can stand the nuclear
reaction. He has some lovely lines. He argues that some US poets abjure narrative:

Finally, he says, it is to do with our relationship with knowledge, and, therefore, power, that we are producing poems which risk risking so little, except the ability to play with language. It made me think a lot about my recent stuff. Not that I’ve written anything since before Christmas, but the stuff I spent ages poring over to go into the new book. I shouldn’t really worry. Andy always says the narrative line is absolutely visible and dependable in my work, though I’m never sure if he means this as a compliment. It made me think more specifically that I might try and start a few lines – or that I
should
, anyway. But that response is always dangerous, doing something programmatically, following an idea rather than a cadence or an ‘impulse’ as Frost put it. I just don’t feel them coming at the moment. The only lines I’ve got stacked up waiting at home are some nervous scribbles about ‘Speaking in Tongues’ and another about my wart (which seems to have been frightened off by the chemo)
à la
Kenneth Koch. Still, it would be good to do something. I’d like to revisit my ‘To my Cousins’ and ‘To Alcohol’ poems from a couple of autumns ago. I’m sure there’s material there. That has always been my problem: massive excitement and confidence while I’m on a writing spurt, then withering self-criticism once it is over, leaving pretty much nothing in the drawer. As I’ve got older the two polar opposites have got worse. The confidence soars like never before (I’m sure because I know it’s
getting harder, therefore deepening any sense of gratitude), only for the older, wiser head to blue-pencil every other line once the white heat has finished. It is just like manic depression. I know that a time of not writing much straight away after finishing a book is normal, but I’d give anything for lines to start plopping into my head again while I’m up here. Colislinn has always worked for me before.

Earlier – before my nap – spoke to Karl on the ward. My scan hasn’t been reported on. He won’t see the result till next week, when I see him again on treatment day. So now we know. Nothing. ‘But don’t worry, Anthony,’ he said. ‘I’m very confident clinically it’s moving in the right direction.’

The first day without rain, very light and clear, if not massively warm. Jock took Non and I in the Landy – only a Landy could have done it – up a foresty track to the top of Comb Hill, two valleys away, on top of which sits a very windy and rattly radio mast. It reminded me of that Ted Hughes poem ‘When Men Got to the Summit’. Massive 360° views, the sort of place where it is only summer, or dry, for a matter of weeks each year. As we rumbled up the track we startled a couple of curlew from their nest on the ground. I’d never seen one before, and was impressed by the curve of their beaks, how black these were, and the size of their wingspan, much bigger than I had imagined. Jock said to me last night after supper as we stood in the living room: ‘I know this sounds crass, but I just know you’re going to be all right, I just know it.’

To Hawick in the evening for a Stations of the Cross service. The highlight of this was the reading out, at each station, of a rhyming doggerel poem by ‘12-year-old Nellie’, presumably from the church congregation.

It contained deathless lines such as ‘Peter had betrayed
Jesus/three times over./What he really needed/was a four leafed clover’; and: ‘Jesus was in/a lot of pain./The soldiers they were/really insane.’ As Tats said afterwards, the service was too sparsely populated – 30 at most – to run the risk of catching each other’s eye and prompting proper church-giggles, though we were all tempted. It reminded me of the time at the church I grew up attending when a lady called Myra would be called upon once a year to ‘share her poetic gift’ at Easter, say, or Christmas. She always insisted on memorising her verses and often ran into difficulties.

On one occasion she got stuck on a line which went something like ‘Oh God, in Heaven above,/we thank you for your power/the evidence of which we see/in the birds, the beasts, the …’ A pause. I remember very clearly the tension rising in the room, someone coughing with anxiety, then, from near the front row, one of the elders suggesting rhetorically ‘the flowers?’ It was enough to get the whole row of boys, seated at the back, and by now chewing their hands, to be shown the door, though whether out of crowd control or compassionate concern for hand-injuries was never made clear.

A lovely luminous evening after another mostly sunny and dry day. Shouts from outside, the kids on the trampoline. The boys have been pretty much feral these last two days, hunting in a pack outdoors and only appearing at mealtimes. In fact at lunch they
didn’t
appear today, preferring to eat sandwiches in the den, which they have been re-building. They materialised at 6 for hot cross buns, coating each one with half an inch of honey or strawberry jam, shouting, each of their knees a brown rectangle of mud where they have been kneeling to crawl into their cave of winter-fallen branches and moss. It reminded me of the most intense feeing of happiness
from about three or four mornings ago. Tats and I had been munching toast quietly and watching the birds on the feeder below the kitchen window – a nuthatch, goldfinches, bullfinches, even a greater spotted woodpecker – when they all burst in in their pyjamas, raiding the shelves for cereal, squawking and beaming. Their aliveness cut me in half, just as an old bit of Abba came on the radio and I named it correctly to shouts of ‘saddo!’ I live for this kind of serendipitous banter and communal mayhem. I found myself looking away brushing my eyes so they wouldn’t see how I was suddenly so close to crying.

Nearly four days now of GCSF (Granocyte/Lengorastin)-related pain, the longest stretch I’ve enjoyed so far. Sharpshivery pulses in my Big Bones (femur, pelvis) resulting in lower back ache-grip. Have felt useless both in and out of the house. Tried emptying the dishwasher today and had to have a sit down. Almost constantly breathless. It’s laughable, with the amount of food I still love and crave, that I’m mobile at all. Feel beached, bloated and sore.

Have started (re-started, that should be)
Intimations of Mortality
by Violet Weingarten, a journal of a NY novelist’s experience of chemotherapy. I like it, but only in small doses. Probably my problem, not hers. But two quotes leapt out at me:

– this cannot be improved upon, by addition or subtracting and:

– which cannot be improved upon, either.

I have cancer.

I hate it in the pit of my being.

But downstairs
Dr Who
has just started, and I want to be a boy again.

Yesterday the worst day so far.

Not the chemo, which I am ‘sailing through’, but the news after it.

After an early finish, say, 2.30, Karl ushered us into consulting room 2, where Felicity Carr sat, and Carol the research nurse on the side. There was a gloomy atmosphere, in spite of Felicity’s determined and natural sparkliness.

She began talking before we even sat down. ‘It’s not good news I’m afraid, the news from the scan. Far from shrinking, your tumour appears to have grown. I can’t tell you how disappointed we are.’

She outlined immediately what the next steps will be. I am to leave the R-CHOP regime in favour of E-SHAP, a much more aggressive treatment, which will start on Thursday week. I will have to go in tomorrow, to have a hickman line put in my chest, a device which allows the drugs to be pumped in intravenously, and also at home. I am to have two cycles of this, four weeks apart, and then a bone marrow transplant at the end. They are already talking about getting stem cells from me and about possible donors from my siblings.

Felicity was lovely as ever, but extremely grave underneath it all. She said: ‘We are guilty, I suppose, for saying there were such high hopes at the beginning. But 80% are really good odds. I am just so sorry that you, for whatever reason, have fallen into the unlucky 20% for whom it doesn’t work. We will of course review everything.’ She didn’t give me any percentages this time.

I asked her, of course, why they thought it hadn’t worked. After a lot of scientific stuff about the Rituximab not really having done its trick and killing the proteins of the tumour, she was left hypothesising, urgently flicking backwards and
forwards in my file to the original histology report. I felt a bit gauche to have asked, but I didn’t really feel I had a choice.

I then asked (‘No, ask away, it’s so important’) whether they could hypothesise about how long I’d had the disease, as it was the question I’d been asked most by friends. Again, after a lot of scientific stuff about one cell receiving either genetic or radioactive information in order to start growing, she couldn’t say. Karl piped in at this point and guessed at around six months, which means it began sometime last summer. I wonder if the virus I fought off at Mart’s birthday, when I had hives all over me, was the one which sparked it all off. I was certainly laid low for a couple of weeks after that. In any case, we will never know.

Felicity asked Carol to make us some tea, and after a lot of reiterating the key facts – it will be worse than it has been so far, and will take 4–6 months of further treatment – we got shown into the ‘Quiet Room’, with its sofas, candles, and soft lighting. We sat in there cuddling for a few minutes before Karl came in again and began chatting about his own cancer. He’s had a relapse, he told us, and will be having to drive to Plymouth for radiology. ‘My lymph nodes have just gone all over the place,’ he said. He looked utterly calm.

‘Can I ask you about it?’

‘Sure.’

‘You’ve got Hodgkin’s, right, which is rarer and less straightforward.’

‘Yes. Rarer and my form is certainly less straightforward.’

‘How long have you had it?’

‘I’m 38 now. I was diagnosed at 16. And I’m still here.’

‘Shit.’

‘Absolutely. But as I said to you in the ward when you told me you’d been having pain, there’s more than one way of skinning a cat.’

‘Did you know then?’

‘No, but my alarm bells were ringing. It shouldn’t be happening. So you taper your language, you know? It’s not over
yet. You’ve just got to realise you’ve been dealt a shit hand of cards and now you’ve got to play with them.’

‘Right.’

‘Shit happens,’ he said, not losing eye contact.

‘That’s one of our sayings,’ said Tats.

‘By the way’, she went on. ‘This room is a disgusting colour.’

‘Good woman,’ he said. ‘I’ve always thought it was a pile of crap, from the day they painted it.’

Been awake since four-ish, pre-empting the coughing-strike by nuking it with codeine (‘may cause drowsiness, avoid heavy machinery’) and then sitting awake (I would say lying awake, but I don’t lie down any more) thinking and thinking. At least I didn’t wake Tats.

All day yesterday in hospital, mostly having my hickman line put in, or waiting to have it done, then lots of other bits and pieces, like a chest X-ray, oxygen tests etc. In its way, a better day than Wednesday, and, in its way, completely shattering.

We both woke early – yesterday’s entry was written in bed before 7 – Tatty around half-four, when she went to the internet and printed off everything to do with E-SHAP and bone marrow transplants, and me not much later, lying blinking in the dark and pretending I could go back to sleep. ‘Did you sleep much?’ Gillian the nurse said yesterday. ‘Not much after four.’

‘I don’t blame you.’ It’s amazing how everyone knows, you just see it in their faces. In this sense, and in the way they all banter relentlessly with each other, it is like a family, one where the pain of the few is felt by the many. We even got to meet Felicity Carr’s secretary, who presented us with her unerring description, in letter form, to David, Dana and Liv, of my situation: ‘I anticipate that Anthony will require treatment for a further 4–6 months.’ She was a nice lady,
smart steely clothes, very sympathetic. You knew she knew. And she knew that. We didn’t make any small talk.

And that was what the whole day was like, really. Brief, intense conversations with everyone, about everything. From the important one with Karl, perched on the side of the bed, about what this all means, to The One About Flushing The Hickman Line, with Gillian giving Tats a hands-on demonstration.

The one with Karl of course lingers longest. It was intended as the one where we’d catch up in real detail all the stuff which flew over our heads on Wednesday. He went back over what would happen. I’m to start E-SHAP on Thursday 4 May (not next Thursday as I’d thought), which means coming in every day afterwards for five consecutive days, all for chemo. Then I go home and use the hickman to pump more drugs. Fourteen days later, just as my white count begins to go up again, they will harvest my stem cells so that when they come to do the transplant they can hopefully use ‘me’ as the donor. I’m going to repeat this process twice, once in each cycle of E-SHAP, which is all I will get of it. Then in July, when the harvesting is over, and they have hopefully got enough ‘goodme’ in the can, they can do the transplant, to rebuild marrow from something like scratch. If there isn’t enough ‘good me’ they’ll go to Mart, Rich or Sarah.

Only one difficult moment in our time with Karl. Tatty kept herself to dates and technical things like when I’d be in the isolation ward and for how long, but I only had one thing on my mind. Now I was in the ‘unlucky’ 20% who don’t go into remission with R-CHOP, what were the percentages like for E-SHAP? As soon as I heard myself ask the question a) I wished I hadn’t and b) I knew he wouldn’t be able to tell me. For I think the first time since we’ve known him he looked uncomfortable and he fudged. I don’t blame him, it must easily be the worst part of his job. What he did say – on Tats’ prompting that E-SHAP looked like a treatment for the relapse of NHL – was that relapse was effectively where we
were, even though we were only a few months away from my first diagnosis. I looked at him and frowned. ‘Well,’ he said. ‘It’s like this. Sometimes a relapse is after six months, sometimes a year, sometimes longer. In your case, the R-CHOP probably held the tumour at bay for a little while before it started growing again. So the gap between progress and relapse was in fact very short. If there was one. Ideally we’d usually get you into remission first before E-SHAP, yes, but in your case we don’t have a choice.’

‘So there aren’t any percentages you can give me?’

‘Well, there’s more left we can do, that’s for certain. And it’s a big treatment we’re embarking on now, that’s true. But after, well, then there’d be radiotherapy, if things still weren’t going in the right direction.’

‘And after?’

‘And after, we’d be looking at managing the disease, not cure as such, palliative care.’

‘Right.’

‘But that’s a long way off yet. We’re going to give this our best shot.’

Having got up so early I was able to do another ‘coming out’ email to all and sundry. The replies came thick and fast, from David’s ‘This is very disheartening news. Rest assured I join with all colleagues at SELL in wishing you the speediest of recoveries’ to Jock’s ‘Make sure you kick this fucker as soon as possible.’

While we were at the hospital Ray, bless him, took delivery of 80 of my new book in a huge spanking cardboard box by special delivery. I picked one out to show Tatty. It looks absolutely lovely, the photo on the front just right, nice blurb and author photo, all very grown-up. Noticed a couple of mistakes – a non-italicised dedication to Andy Brown, a non-centred quote under ‘Basil and Chopped Tomatoes’ – but nothing most punters will pick up. It’s a book, and it has my poems in it, and it is in the world at the same time as I am.

Last night, best bit of the day, one of our four-in-a-bed cuddles with the kids. Lots of fart-banter and giggles and M&S promising evil things to each other without meaning them. A residue of rawness between them, which may take time to heal, having been left for so long unsupervised yesterday. The plan had been for them to be at Robyn and Rory’s, but it seems they spent most of it here, latterly at each other’s throats. We had to tell them the news.

‘Does it mean you’ll die?’ said Shim, direct as ever.

‘No, it means we’ve got lots more treatment ahead of us which is going to take a long time and which they are very confident will make Dad better,’ said Tats.

‘It’s what they give when the first treatment doesn’t really do its stuff,’ I said.

‘Did they promise you you’d live?’ he said.

‘No, my love, they can never make promises with cancer.’

‘Why not?’

‘Because you can only be sure you’re not going to get it again once you haven’t had it for five years.’

‘But Robyn’s OK.’

‘Yes, but she’s been clear for two years now. She’s still got a while to go.’

It’s the first time I think the potential seriousness of the whole thing has really been laid down with them both in the room at the same time. But if you’re going to face your mortality with your kids, doing it in bed, with their head on your chest, while wondering out loud ‘who farted?’ is the best way I can think of.

I lay awake last night and planned my funeral.

Not in the kind of detail which I can now recall and record, but I definitely had a vision of it, its texture and tone. The only thing I can bring back with any certainty was that I wanted Wes to be in charge of the music – absolutely no organ music whatsoever – by playing pre-made compilations
of my favourite tracks as people came in. Perhaps I was really half-asleep and dreamt the whole thing.

The other thing I know I thought about very clearly (though this may have been a dream as well) was that I wanted a cricket match to be played in my memory at Ide – family vs. the Cavaliers – and for my ashes to be scattered in the Slitrig at Colislinn. I have a very clear memory of seeing (dreaming?) Wes and Allie, Simone and Cameron and the kids, Jay and his, Jockie and Charlotte, Nell and Patrick, of course, Claude and Lauren and my family, performing a very simple ceremony, in wellies, in the summer, then having a huge hog roast on the grass with wine and music. I don’t know how long I was awake for, but I think it was at the second interruption, some time around half-one, when I went through all this. The odd thing is, I remember the feeling of cool detachment more clearly than I do some of the details. It’s the first time I’ve really gone into that realm, the kind of what-happens-without-me. And in many ways I only just organised or allowed myself to see the first five minutes as it were, not the endless drudgery of February school mornings when they will oversleep and the roast will burn.

On Monday night, a precursor of all this, as Tats and I lay awake talking into the darkness about the possibility that I might die. Again, I don’t recall too much of it, more that it was another ‘first’, where the possibility of travel/summer holidays/money arrangements being changed was faced and discussed tentatively. We assured our love for each other more times than I remember. And I know I said at one point that if I do die the Legal and General life assurance will pay up in full, which is more than they do if I live. It’s funny, what you say. You think you’ll say something grand and romantic but what you come out with is ‘My finances are in about four different folders in the filing cabinet.’

Took Shim to school yesterday and saw Vince and told him the news. Before this he opened with the usual: ‘Hi, Ant, you
look terrible.’ I thanked him for this of course, putting on my best hurt look. He replied: ‘I thought you might want it straight, occasionally.’ It’s funny, all this banter. When you get in a groove with someone and set the tone – sledging at the shops etc. – it’s silly to take offence, when you know that’s how it’s going to be. And yet it really got to me. In some ways he’s doing me a favour – I do look terrible, I certainly feel it – by not putting ‘How he feels’ above the truth, which is what invariably is going on when people say how well I look, i.e. reassuring themselves that things aren’t as grim, potentially, as they are.

I should have thanked him.

Still having broken nights. The coughing fits are not as intense as before, that is I don’t cough for up to 20 minutes/half an hour and I don’t cough as much up, during them, as I used to. Usually I can stagger to the bathroom, take some codeine, and it’ll be over in less than five minutes, if that. But the lying half-propped-up, to drain the mucus, is something I’m still not used to. I find myself ‘burning up’, kicking off the sheets, with no temperature at all, very sweaty. Then half-awake dreams, a sip of water, a bit of clock-watching, then oblivion till the next rasp-tickle shakes my body upright. After our talk in the darkness on Monday I had one of the worst nights ever, feeling, as the
Today
programme came on, that I had not slept for a single second. I suppose I must have, but it felt very much the opposite. The last two mornings I have actually walked Shim to school, hatless now the warmer air is here, for all the world to see what I really am: a small-step-taking well-dressed bald guy who looks short of breath.