Authors: Anthony Wilson
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.’
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.
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.
I don’t remember anything I said to anyone, or anything they said to me, but I do know I wanted it to go on forever, so that I could keep using it to affirm the fact of still living, eating and having friends. Is this what it all comes down to? A few evenings in your garden with your closest, and which you
know you will never forget? It was exhausting, but ordinarily, spectacularly, quietly and lovingly an evening of laughter and snatching the moment.
Not only because I’d had a few
Proseccos
and peach juice, I slept the best night’s sleep for weeks.
Saturday I sat on the doorstep and chatted to Tats while she re-organised the front door border, digging up fuchsias, moving the baby palm, putting light between the plants. I moved a few stones in the border for her and got completely breathless. Very kindly halfway through Will and Susie from over the road came to share in the good news, with handshakes and smiles. People seem to divide into those who say ‘What fantastic news!’ and those who say ‘I hope you sue the NHS!’ Lovely that they are firmly in the former category.
Yesterday at church, Sally stood up and told everyone of her plan for them to pray for me and the family. ‘The idea is,’ she said, ‘that Ant and the family do no work whatsoever, and they feel no pressure to say how much it is or isn’t working. So, don’t email them to ask what to pray for because that makes more work for them. I leave that to you and God but some ideas are: fun, sleep, laughter, togetherness, hope and faith. And, of course, healing. The other idea isn’t that you go into a darkened room for half an hour, but that you stick a post-it note on the coffee jar, or on the buggy or on your shoes, and that when you see the post-it note, you say your prayer for them. On the other post-it note, you just write your idea, so I can collate them all together in a folder. Then they will know what is being prayed for them and at what times. Of course, you leave it anonymous.’ I listened to this brushing away tears from my cheeks, trying not to look round at people looking at me. ‘We’re doing this as the body of God,’ she said. ‘When one of us hurts, we all hurt. You don’t even have to know Ant to commit to praying for him.’
So many memories of Friday. About half an hour after the call with Felicity, Marco Mullen came round to say, in his own words, ‘Life’s a bitch,’ not having heard the news. He stayed for coffee. Halfway through our natter, Maura came in with a card, sobbing. She gave me a hug in the centre of the sitting room, nodded wordlessly at Marco, then left, still sobbing and trying to smile. It was really quite biblical as an act of wordless support and affection; touching, and faintly comic all at once.
My other favourite is Jockie giggling, really giggling, on the phone, just saying over and over ‘Those Wilson genes! Those Wilson genes!’, as though they had something to do with me getting better.
Propped up in bed, a lull before Sarah arrives on the train. A cold, grey day, drizzly and a little windy. I knew my new jumper would come in handy. Secretly glad that the plants are all getting watered for free.
Light in spirit but weary in body. Despite the best night for a century – only one coughing fit, to go with my night sweats – woke up feeling as though Daffy Duck had paid another dawn visit. It was all I could do to get downstairs in pyjamas and make Tatty and Bendy a bagel. I’m puzzled – and still a little worried – by my right-side abdomen pain, where the tumour was originally detected. Sometimes it’s sharp, jabbing, sometimes a dull ache, the ‘sleeping in a draught’ ache I described in hospital on January 6th. Mostly it is in the same place, but I’ve noticed it travelling about, sometimes up, under my ribs, and sometimes approaching the middle of my back. Very weird.
Since the good news, have become aware that events have been occurring in the outside world.
Cancer does do this to you. Suddenly nothing much else matters. The real National Emergency is your Big Bone Pain with the GCSF kicking in, and your breathlessness after the school-walk. How dare the press not cover it? As Violet Weingarten says: ‘This is the jerkiest journal of all time. Meanwhile Vietnam falls.’ So: good news or not, I’m still infatuated with my own creakiness as I live it each day, the real living reality of feeling crap just about all the time my main song and story. And this leaves me feeling slightly guilty, diminished, somehow, on the news of my improving condition. I should somehow have risen above the chronic kindness, the diarrhoea, the runny nose, the phlegm-producing hack. The thing is, this is what having cancer feels like when you get better, still laden with iatrogenic loveliness, as it always has been.
An example of how the word cancer dominates everything came just the other day.
I was having a coffee in the kitchen and caught the end of a headline about a snooker player from the world championships in Sheffield. What I heard was ‘… was defeated today, leaving him to continue his battle with cancer.’
Two things jumped out at me: the implication in the newsreader’s voice that he should never have been at the tournament in the first place, having a far more important ‘battle’ to engage in; and, second, that it was no real surprise that he had lost because, well, cancer’s really serious, isn’t it? All of this, just in his tone.
But you know what else is coming. It’s that word ‘battle’ again. It almost had me writing to 5 Live cc. the Director General. I cannot believe that in the twenty-first century we have not yet thought of a better way of describing the fact that someone has a particularly nasty disease. It’s the only time we ever use war metaphor where illness is concerned, it seems to me. Why? Could they not have said ‘leaving him to continue his treatment for cancer’ or ‘leaving him to continue with his cancer treatment’? Isn’t it more accurate, and, therefore, fairer, not only on the poor snooker player, who has also had a gruelling
tournament to play in (of his own free will), but on the rest of us mortals who let our doctors do the battling for us? I suppose that admission is at the heart of it.
What cancer sufferers know – or this one, at least – is that ‘battling’ the disease is the last thing you feel like doing, especially once chemotherapy starts. So we leave that to the experts, who know what they are doing. Me, I don’t want to ‘battle’ anything. I just want to be made better. Admitting that we – I – don’t want to battle runs the risk of looking cowardly and not up for the fight. It also is what really lay behind the 5 Live newsreader’s tone, an anxiety that to not call it a ‘battle’ would be somehow to label the snooker player an ordinary bloke like the rest of us, just someone with ongoing treatment of a particularly nasty kind.
This is what the word cancer does to us. It makes us intensely worried for ourselves. Not just because of all its association with death, but because it attacks our sense of invincibility, and forces us to create a language of needing to do something, in this case fight, in order to outwit it. (Even in a long argument against war metaphor in describing cancer I am ambushed – ha ha! – by my own unwitting use of ‘attacks’ and ‘forces’: the best of us go down in the fight …)
All of this also applies to the description, yesterday evening, on the same radio station, of a former Liverpool captain’s wife having recently ‘overcome’ the disease.
I applaud her and her husband’s work in raising awareness and funds by holding a football match (a repeat of the 1989 cup final classic with Everton), but I object to ‘overcoming’ the disease, i.e. the media using that phrase, when it is more accurate to say ‘has successfully completed her treatment and begun remission.’ The unspoken implication, otherwise, is that there is a link between her having a famous (and talented? and fiery? and skilful?) husband and famous (and fit? and talented? and healthy?) footballing friends, and getting better from cancer. Which is tosh. I rejoice in her getting better.
I rejoice in how amazing it feels to know one is going to spend longer living on the planet. But I’m amazed by our inability, in one of the most media-savvy countries on earth, to find a language which is a little less afraid of taking time to describe the process of getting better from cancer as it really is, and not some mock-heroic epic from the medieval ages.
A day of gifts: Rupert sent me the latest Billy Collins book, a ‘spare’ as he put it. I’ve just read the first quarter of it in one go, a miracle. I can’t think of anyone’s poems it is so pleasurable to live within during each poem’s duration. It may even get me writing again, an argument he makes in the title poem ‘The Trouble with Poetry,’ which is that one poem always provokes another. We’ll see. I just saw Tats’ orchid beginning to wilt in the bedroom and it gave me an idea …
So today I am energy-man. Yesterday was chemo, my last day of it before the final two Rituximab-treatments, which finish on the last day of May. I slept through most of it, most likely because they gave me a bed. No sign of Karl, still having treatment in Plymouth. Hugs all round from Carol and Gillian, big smiles and genuine warm relief. A nice moment with Ian who made a gentle forward defensive movement, in reference to our cricket conversation from two weeks ago, saying ‘Maybe you’ll be doing a bit of this after all …’ Not much else to report.
Felt done in (as usual) on returning home (couldn’t have done a poetry reading, even out loud, propped up in bed …) but wasn’t sick, though have just noticed that am still burping last night’s meals-on-wheels Moussaka, which Tatty kindly said was all mine when she saw a third of it was left at the end. This I will not miss about cancer treatment. (It is 25° today, apparently, the hottest of the year so far. I should be outside under my umbrella, on the new garden furniture, only it hasn’t arrived yet …)
Duncan, yesterday’s doctor, decided against giving me more antibiotics for the cough, as the diarrhoea has been so bad with it. I agreed with him. However, I did spend all of last night in the same bed, no trips to get codeine at half-two, and no ejections to the sofa. Another miracle … Let’s build on it.
Friday seems an aeon ago now – that sun, energy, able to get out – and today is gloomy, cold, damp. The blossom is out now, both lots, crab and apple, former catching up with the latter as always, just a week later. I hope it doesn’t rain too strongly and wash it all away.
Later Orla came round with some daffodils, though by then it was too chilly to sit in the garden. I really got caught short with diarrhoea, so left a ‘back in five minutes’ sticker on the door just in case. Good job I did.
Saturday Shim had Louis over to stay. They played on the computer and Playstation most of the morning while Tatty and I slouched in our PJs and read the paper and drank tea and waited for Merenna to get ready to go into town. They left. Then a fry-up with the boys while listening to my fab new digital radio in the kitchen (from my birthday money). It does indeed have Sports Xtra, which seemed to be hiding when I began playing with it on Friday evening … maybe the reception in the kitchen is better … my afternoons listening to the cricket are safe.
I think the rest of the day was quite lonely, really. M & T out in town, the boys at the park (till it began raining). Lots of telly in the evening, catching up on recorded episodes of
Without a Trace
and
Murder City
, none of which I felt I watched properly, as I had to go out and rescue Shim from a disco party (!) he’d been invited to. A rubbish night, lots of coughing, followed by a very early wake-up. Not as bad as Friday night, though, where I ended up on the sofa.
Sunday morning crept about downstairs eating 3 breakfasts and reading last week’s
Observer
Review till Tats shouted down that she was awake. Came up and over more tea reminisced how when they were little, I would beg the children to be quiet on those early shifts ‘so mummy could sleep’. ‘The thing is’, I told her ‘they always ran back to you in the end. Somehow, when I wasn’t looking, they’d charge upstairs and jump on you. There I’d be, grasping at their ankles on the stairs shouting “Be quiet or you’ll wake mummy!” which of course woke you up.’
‘Funny’, Tatty said, ‘I have no memory of that time at all.’
‘And now I have cancer, I’m doing it all over again, still trying to finish the paper, only now I can, because no one else is up.’
Sunday Tats went out. I sat in the garden, with my hat, under an umbrella, and read this week’s
Observer
, all about the reshuffle, the new digital radio for company. You can get used to mornings like that. But it was oddly lonely, again. Shim happy on the computer in his last few hours before SATs next week, Merenna out at a canoeing party. I came in and put some vegetables on for roasting for couscous, then spent the rest of the morning shuffling in, then out, unsure if the sun was warm enough or not. The boys vanished to County Hall on their bikes, and, while Tatty went to fetch M from the kayaking party, I did some edging and got breathless. Good to have done it anyway, especially before the rain, which inevitably fell later.