Authors: Anthony Wilson
No scan results yesterday. None today so far. I rang Karl earlier on the ward and he got Helen, Felicity’s secretary, to chase for a fax off them. It’s 2.15 now. Still nothing. Watched a lot of telly this morning, after dropping Shim off, mostly old
Frasiers
. Then emails. Then more telly. Have settled to nothing.
Luckily I had Shim’s sports day to distract me – his last ever at primary school.
They had been given the use of the Royal Deaf School playing field and it was nice to step out of the house for an hour and a half following them round on their circuit of activities. They divide them up into four teams: red, blue, yellow, green. Shim was in yellow.
Some of the games were truly Beckettian: dribbling a ball round markers on the long, pitted grass in a relay; aiming a ball at some cricket stumps from 15 yards, also in a relay. Shim does best at running. He was beautiful to watch, all purpose and concentration and flow in the hurdles, and later in the individual sprint.
The latter was the last event of all, after the individual hurdles, and was played out in front of the whole school and all the parents. He told me in his modest way as we walked to school that he had been picked from his class to represent them in the race, but I could tell he wanted me there.
His race was the last one of all. He came a valiant second. He led for the first 20 yards, but was overhauled, and lost by a yard. No shame. My main emotion, after pride, was nerves. As the build-up to the race grew longer I realised both my knees and my hands were shaking.
As he ran back to take his place with his class he held his hand out for a high-five, which I took to mean he was glad I had come.
Then the teachers asked for quiet and for the parents to gather round for the prize-giving. I hadn’t seen the scores, so had no idea of the result, but the cups on the table, with coloured ribbons already tied to them, gave it away.
What I hadn’t realised until this point was that Shim had been wearing a yellow bib to denote his status as one of the team captains (there were three for each team).
As he went up with his classmates to collect the winning trophy, I realised I was still shaking, and close to tears. They shook hands awkwardly with the PE teacher, then, as if they had rehearsed it, held the trophy aloft, each with one hand, jumping up and down, for all the world like Brazilians lifting the World Cup.
A man I know, but haven’t seen since my diagnosis, came up to me in between races. A really nice guy, someone we’ve had supper with. He knew I was ill. He really hoped I was getting better, he said. Then he said the most stupid thing I have heard all year: ‘I’ve been meaning to ring you.’
I took this to mean: ‘I really wanted to ring, but didn’t because I was embarrassed and afraid. Anyway now I’ve seen you I won’t ring any more, or will still not ring, only now you know that I won’t. Which is what I wanted: for you to know I knew without having to speak to you. Sort of.’
Still no news.
Waiting days are the worst. Somehow the last CT wasn’t so bad because I was booked in to see Felicity so knew I wouldn’t be arsed around. The wait over Easter was agony, looking back; I’m glad now, that we had a houseful of family in Scotland to take our mind off it. Desperate to know something before we take off to Lymington for Granny’s birthday
weekend. Am determined not to play ball with the ‘How are you
really
?’ crew.
I have two blood ‘splinters’ remaining on my fingernails. Each treatment is marked in a little wave, some of which have become deep grooves.
On my left forefinger and thumb there’s a classic dip, with just a hint of surface flaking. But my right forefinger, thumb and index are a mess (these perhaps because they bore the brunt of my camping burns 18 years ago). It looks as though someone has hit them with a hammer, but painted out the bruising.
Two or three millimetres from the top of each nail begins a curved jagged crack, with the new nail, pink and soft, emerging underneath. On my thumb it’s possible to see two or three layers of dead nail exposed as the new growth takes over. It is not pretty.
Noticed last night that the verucca on my left foot, which disappeared during chemo, has come back. The wart on my left forefinger seems to have gone for good, however.
A neighbour said to me she heard a talk on cancer for her work the other day. It included the line: ‘You can get your holiday photos done in an hour, but to find out if you’ve got cancer takes at least a week.’
It occurs to me that when they ring I’ll be finding out the most important news of all, as when I was diagnosed, at home.
As I did then I’ll be standing, with a cordless phone in my hand, probably in the middle of something but now looking out of the window, the weather now sunny, and a new growth of scaffolding on a house down the street.
I’ll be upstairs I should think, probably watching telly, having just hit the remote button. Suddenly the planet will be very still, but for a bird singing somewhere, or a car starting up. And they will tell me, quickly.
And whatever they say I will say thank you, as I always do, and ask about what comes next. Then I will phone Tatty and sound will return to the day, just in time for
Frasier
, or coffee.
It doesn’t happen like that of course.
Your parents ring you. Then your wife. You ring the hospital in exasperation, and are put on hold, not like in a call centre, with acoustic ambient music to listen to, but with the phone plonked down on the desk. I could hear the drug infusion machines beeping bing-bong, bing-bong in the background, and felt suddenly sick. Then Karl’s voice, from a few yards away: ‘I think what we’ll do is … and then … so we’ll see you on … is that OK?’ Tantalising. Then a nurse talking about last night’s football. Then laughter. Phil came back on to reassure me he was coming really. Then utter silence. More ward noise. Then suddenly Karl.
He was guardedly optimistic.
‘It looks like good news,’ he began. ‘We can’t be certain until Wednesday, when we’ve met with the radiologists, but it looks like it might be clear.’
‘OK.’
‘You’ve got what’s called ‘low uptake’, which might be just inflammatory material left over. If it’s still lymphoma it tends to be high uptake.’
‘OK.’
‘So you are probably clear to be deemed in remission, and probably won’t need radiotherapy.’
‘OK.’
‘But as I say, the radiologists are really the ones who know how to interpret these pictures. So we won’t know for sure until Wednesday afternoon.’
‘What time?’
‘We meet from 2–3, so give me a ring at 3.30 and I’ll let you know.’
‘OK.’
‘The thing is, if there’s any doubt, you will have radiotherapy. What we don’t do is under-treat you and then for it to come back in six months.’
‘Yes. Quite.’
‘So, I’ll speak to you next week. Have a good weekend, Anthony.’
A kind of limbo-ish feeling, but with good grounds for optimism. This is only the second time the word ‘remission’ has been used. And the first time was to name what I didn’t have. I haven’t exactly ordered champagne from my wine merchant, nor gone on a 1-click spree, but neither am I sobbing into my shoes.
Feel odd. If it is remission, why still these vestiges of pain in my side?
Spoke to Tats and we agreed it was good news but in light of the meeting of the Wilson clan later, that we’d keep it to ‘guarded optimism’ rather than ‘probably remission.’ ‘It isn’t hard news,’ I said to Daddy on the phone, ‘so we won’t be phoning round. Not ‘til after Wednesday anyway.’
Felicity has called. She repeated much of what Karl had said – that there was low uptake on the scan and that the news was more good than bad – but the angle, the tone, felt different.
A key oncologist cannot make tomorrow’s Multi-Disciplinary meeting (MDT) and so they won’t be discussing me now until next Wednesday, 5 July. He really needs to be there, she said, because he is the expert at interpreting results such as mine. I said, fine.
Then she laid out in front of me what she thought would be happening next ‘in the most likely scenario’. This is that I will probably have another PET scan in 2 months’ time, followed up with a short course of local radiotherapy. She explained
how with my kind of lymphoma the end of the treatment can be difficult to manage because they are often unsure as to how cancerous the tumour remains.
‘If you had a lump on your neck, for example, we would biopsy it straight away as we would know. But in your case it’s just so inaccessible – even more so, now it’s smaller – that that isn’t an option. Very rarely do we operate, but that carries quite a risk, so normally we don’t. You see, what I’m trying to avoid is having to give you aggressive chemotherapy – E-SHAP – which would be like using a sledgehammer to crack a nut; at the same time I don’t want to under-treat you and for it to return in six months’ time.’
She finished the conversation – after I had told her that I’d just seen my entire family – by saying that I could tell them that the news was ‘very good’, that I am in ‘partial remission, maybe complete remission’.
It’s too much of a mouthful. All I am saying to them is ‘They’re cautiously optimistic, but will probably need to do another scan.’ After a bit more questioning Felicity said that even if they think my remission is more than partial, they will do a PET scan in a couple of months, to be sure.
She’s writing to me so that I can mull it over (‘Is it clear as mud?’ she said) before next week’s meeting. Later I’ll be getting it as a fax. When I told Tatty all of this at lunchtime yesterday she seemed happy enough. But later, when Non rang to wish her happy birthday the question moved to ‘Why don’t they just start radiotherapy straight away, if they think they want to be safe – so that it doesn’t grow back?’ This is a good question. To settle it, and for Tats to hear it directly from Felicity herself, we’ve booked ourselves in for a chat at 5 this afternoon.
As we sat in Wagamama’s for Tats’ birthday meal last night we told the kids the latest, although it hardly felt like news of any consequence.
‘Does this mean you’re getting better?’ they said.
‘Yes. But I’m not better completely. Not yet.’
‘They want to use radiotherapy on me to make sure I don’t-’
‘To make sure you don’t die?’ said Shimi.
‘Yes, to make sure I don’t die.’
Very very very frustrated.
I long to be able to send a magical email to the whole world using the word remission, but dare not. Saw four colleagues for lunch yesterday – I didn’t understand any of the gossip, and was at least five seconds behind all the jokes – and couldn’t tell them any news, relying on the already well-worn phrase ‘They’ll know in a week’ to head off more close questioning. Playing for safety? Most definitely. I felt guilty, especially as I know that next Wednesday may bring no more information than I have now.
I think Felicity is very keen to be seen to be transparent – and not rushing into announcing a result – which I am grateful for. The subject of her call was really one of preparing me not to expect my treatment to be over until after the summer. I’m sure of that. I can feel myself starting to worry about work – all the crap that needs to be done which I might not be around to do. The frustration of this, and for the first time, the feeling of guilt which goes with (unintentionally) dumping on others. But then, I keep reminding myself, I have cancer. It’s not like it’s serious or anything.
I had an epiphany to this end last night in the restaurant.
Just staring into space and idly thinking how beautiful my family were and how I consider them my main achievement in life, it suddenly hit me like never before: cancer can kill you. Until now I’ve thought of it almost on a local level, as something serious which is only possible to deal with by taking each step as it comes: diagnosis, chemo, side effects, scan, results, news, chemo, side effects, scan, results, news etc. In other words, by forcing yourself not to look too far ahead – by focusing on your beautiful family, for one thing. But suddenly, three or so weeks after finishing being treated,
feeling better, having the odd drink, eating cheese and olives again, I find myself wanting to be cured
now
, wanting my energy to return NOW, please, impatient that it isn’t over, that the ‘light at the end of the tunnel’ seems to keep receding. What hit me – and I know this will sound really stupid – is that unless the doctors remove my cancer now, it will come back and kill me. Not having allowed myself to consider the final stages of treatment before, I’d not thought through the necessity for it to be successful, having always assumed it would be. Now that there’s some doubt as to what the results mean it’s finally become clear to me that you don’t move from treatment to remission just like that. Instead, you move from certainty that you have a nasty disease, to good progress with the cure, to needing to be certain about the cure, to needing to be even more certain about the cure, and only then using words like remission. It’s like chopping a salami in half, then three quarters, then seven eighths, then chopping that final eighth into sixteenths then thirtyseconds (or whatever they’re called), each smaller slice taking you paradoxically nearer to being cured but further away from a definite answer. That’s where I am now. What hit me is that whether you’ve got a whole salami in your hand or a slice the size of your fingernail, you still have cancer and it can still kill you. I still have cancer. They haven’t cured me. Yet. I can still die from this.
And then our food arrived, steaming and delicious.
A sunnier day than it started. Am sitting upstairs with the Walkman, having farted around on the laptop all morning, checking emails, re-checking them, looking at bands on the internet, wondering how to buy music online, generally killing time. Would Virginia Woolf have written
The Waves
if she’d had the web to play with? Probably.