Love for Now

by Anthony Wilson

  ‘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.

  Thursday 27 April

  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 th
is 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.

  8.20 pm: Later

  To the hospital this afternoon with Mummy and Daddy (here all week since Tuesday) and Tats to ask Felicity Carr some more questions. Tats drew up a good list two nights ago (at 5 in the morning, obviously).

  It begins with asking about the ‘investigation’ into my relapse. What does that mean and how does it take place? I think Felicity is an enormously skilled doctor and a very gifted human being to boot. She began answering me before I’d even really begun. At this stage it was just Mummy and me with her in the Quiet Room. Daddy was parking the car and Tats hadn’t quite got back from school.

  We were just getting to the part, having reassured me that it was, indeed, B-cell and not T-cell lymphoma, about the process which histologists go through in making their diagnoses. My histologist would not have reported alone, she said. It was now routine that they went for a second opinion. If there had been any significant doubt, they would have sent the sample to UCL in London, which is the national centre of research excellence on these things. ‘He’s from UCL anyway, our man, so I was confident they’d got it right.’

  At this point, Janette, the specialist nurse, came in and joined us. Ten seconds later she was followed by Tatty and Daddy together, so we went back over the whole thing again for them. Felicity was both humane and thorough throughout, pausing to go over the more arcane scientific jargon, but always full of reassurance that we ‘must ask anything you want, anything, that’s why we’re here.’

  Having established who we all were, and a tray of tea having been brought in; and that the enquiry into my results was ongoing as of now, there was a knock on the door. It was Helen, Felicity’s secretary. She handed her a piece of paper, about half A4 in size. ‘This has just come through, Felicity. It’s Anthony’s scan report.’

  There was a brief silence while Felicity read the words in front of her.

  ‘Well I don’t know what to say. It seems that this is saying the opposite of what we believed to be the case last week.’

  Another silence.

  ‘The report I have in front of me is saying, Anthony, that your tumour has, in fact, shrunk, as we had hoped.’

  ‘But how come the report last week said exactly the opposite?’

  ‘I really don’t know. I’m so sorry to pile on the torture for you like this. It seems it wasn’t reported on accurately at all.’

  ‘So the treatment is working after all?’

  ‘Well, according to this, yes.’

  At this point Felicity despatched Helen to go and call the radiologist so that they might speak.

  As she left, Felicity began to hypothesise about how this may have come about. The multidisciplinary meeting would have taken place, as usual, with many cases to look at. She went on. ‘The only thing I can think of to explain it is that, at the end of the meeting, and needing to give a verbal answer to the question of whether your tumour had shrunk or not, he got the slides the wrong way round and looked at the 10th April picture before the 3rd February one, and assumed there’d been an increase in the tumour-mass. That’s all I can think of. It sounds to me, if this is correct, in front of me here, that he got them in the wrong order. I am so sorry to have put you through this.’

  ‘But it’s the right kind of mistake, if you know what I mean,’ said Tatty. ‘I’d much rather have it this way round.’

  ‘Well, of course,’ said Felicity. ‘And it places everything we’ve said now about your change in treatment in a completely different light.’

  ‘You mean we go back to CHOP-R?’ I said.

  ‘Exactly. We keep going with what seems to be working.’

  A knock on the door. It was Helen again. ‘They’ve found him and he’s on my phone.’

  Felicity disappeared, clacking down the corridor. After an endless five minutes of social chit chat with Janette, Felicity appeared in the doorway smiling but saying before she even sat down that we wouldn’t have a definite answer till tomorrow. The radiologist was extremely busy now (and upset, she told us) so would have to take the slides home with him. He would call her first thing, after which she would call us. In any event we could always come in again to chat.

  After some more blood tests (normal again) and another check of my chest (more antibiotics) I was free to go.

  I can’t begin to say what a relief this is, nor how nervous I am that it might be another mix up, as if, having mixed it up once, fate will balance things out by sending me back the original result, namely that R-CHOP is not working. We haven’t even told the children, we’re so wary of getting their hopes up. We told Rich, who came to visit today on the train. But even as we stuck to the wording of the report (‘a substantial decrease in the tumour size’) Tats refused to get our hopes up saying ‘I just can’t engage with this emotionally, Richard, at the moment, not until we know for sure.’

  Friday 28 April

  Felicity phoned at 10 and got to the point straight away, as she always does: ‘Anthony, it’s Felicity Carr here and it’s good news.’

  She went on to say that the tumour had shrunk by 90%, going from 4/5 cm in mass (the figure I remember the first ultrasound man quoting to me) to 1/1.5 cm in mass. The treatment is working, and has every chance of continuing to do so. Simple as that.

  What is it like, being told you are going to live? You hug your mother, who cries. You phone your wife who goes ‘Yipee!’ You drink coffee and eat pastries to celebrate. You tell your cleaning ladies, who are so pleased (they thought you looked better than last week). You tell your daughter, who is off school with a sore throat. She says ‘Why are hospitals so stupid?’ You receive many phone calls. But what is it like?

  It is like watching the light fade from a room, sunlight making patches on the house opposite, the pink tips of apple blossom daring to poke through into the same, as you have done a thousand times before. But this time you know you’ll be doing it again, next year, and probably, the year after that.

  It is dreaming up something profound to say about Kylie Minogue’s post-treatment haircut, and about the newspaper coverage of it, but resisting the urge. Ditto the obituaries you read this week of the man who invented the CT scan and the man who discovered a cure for leukaemia in children. Life is too short, you tell yourself. From now on I will write what I want.

  It is darting in and out of the office to check who has sent you the latest congratulatory email.

  And remembering that Chelsea only need a point against United at
the Bridge tomorrow to win the league.

  It is feeling that you might start reading poetry again.

  It is breathing in deeply on the doorstep in the sunshine, and, though it induces a coughing fit, being grateful for breath at all.

  Life

  Bank Holiday Monday 1 May

  A sunny day in the garden with Tats. I’ve managed to contribute at last, by moving a few stones here and there, but the real effort, not least vision, is hers. She’s re-positioned many of the raspberries, re-organised the front door border; taken out all the yellow pom-poms (as she calls them); bought tomato bags and planted them up with tomatoes, courgette and cucumber; re-filled and re-planted all the plant pots, pruned the blackberries; and espaliered and re-planted the apricot along the fence with canes. Heroic.

  The weekend was alternatively quiet and celebratory. Saturday we phoned round the gang for a barbeque and charged off to Aldi for sausages, chicken, salad etc. Prior to this we made visits to Calor Gas (closed at 12 on a Bank Holiday weekend), Martins the caravan people and B & Q, none of whom had the right kind of canister for us.

  Then a sleep. Then everyone turned up at six, even with little kids, for one of those thrown-together evenings which are so much better than the long-term planned ones. We had: chipolatas, butcher’s sausages, chicken in lemon, garlic and pesto, Tatty’s asparagus wrapped in Parma ham, chicken salad, boiled new potatoes, hot rolls from the oven, followed by strawberries and cream (ice lollies for the littles). Tats pulled out our old self-erecting play tent for the kids and everyone settled into a groove immediately. Present: Paul & Sally, Kari & Steven, Rory & Robyn, Jack & Jena.