Love for Now (25 page)

I saw her wince.

‘Like Lance Armstrong?’

‘No, not like him at all, actually. I picked up his book the other day, read two words, and realised it wasn’t for me.’

‘Oh good,’ she said. ‘For a moment I thought you were one of those,’ she paused, looking for the right word, ‘
fanatics
.’ She smiled. ‘That’s not our style here at all.’

It has been confirmed: Lisa has lung cancer. It has spread to the mucous membrane of the lung-lining and it is aggressive. They are not going to treat for a cure. Unless a miracle happens, she won’t be making it out of this alive. I can’t describe the feeling of numbness this leaves me with.

Talking with a friend about it just now I heard the phrases ‘It’s so unfair’ and ‘They’re so unprotected.’ I took the latter to mean that the family have fewer reserves than the rest of us, living in the sticks as they do, and being so shy. I heard myself reply ‘I think we all are, when we get the news.’

Cancer is unfair on all of us. And we are all unprotected. However organic your diet, however pure your lifestyle, Lisa’s example teaches us that it can come for you next. Most of all, as Matt Pascoe says, this means absolutely nothing. It is just sheer bloody awful luck. Of course she doesn’t deserve it. Shit happens.

A small thing happened yesterday: I felt poetry start to come back to me. As Pascoe said at Greenbelt ‘The thing is, if you’re a writer, you’re always half standing to one side saying to yourself “This is good material.”’ I hadn’t even mentioned the diary. But until yesterday I had effectively given up hope of turning the experience into poetry.

The key to making this seem positive was re-reading Julia Darling’s amazing
Sudden Collapses in Public Places
. For
once a blurb is accurate. There
should
be a copy in every waiting room in the land.

I’d read it for the first time last year, hot on the heels of Arvon and Brie’s recommendation of it at the same. I was struck then by its humour, directness and – for want of a better word – courage: the determination not to let terminal illness swamp what Czeslaw Milosz calls ‘good spirits’.

Re-reading it yesterday – straight through, twice – I saw again how much of its sinewy strength is derived from the unforced naturalness of the diction, and the no-nonsense metaphors it employs to describe various qualities, physical or otherwise. Thus, in ‘Insomnia’, sleep becomes a friend who has fallen out with the speaker. The body becomes an extension to the house; and rumours about her health become films projected onto buildings.

As I read I felt the unmistakable – and unfakable – stirrings of lines and promptings arriving through the cloud of tiredness. I lay on the bed, unable to sleep, jotting down random phrases and images without censoring them. I know this to be the gold standard way in which poems begin. It is chaotic, unplanned and as near to preverbal as it’s possible to be while still containing thought in the shape of words. It is also very exciting. It means some sort of other shaping process is about to start happening.

Lying reading Julia Darling yesterday I had two violently strong feelings which should have cancelled each other out but didn’t.

These were: that this has been a terrible year. I have cancer. Another close friend has just been diagnosed with terminal cancer. Our best friends’ marriage has disintegrated. And: I am inexplicably happy. I have a gorgeous wife and two beautiful children who are starting to show potential in amazing ways, in writing and film and music. I have a new book of poems in the world and a room to write them in. I have found
out who my true friends are. I have learned that work isn’t everything.

All this in a year I never want to repeat and wouldn’t wish on anyone.

Today is warm and sunny. The apples have nearly all dropped from the tree. They soften and brown on the lawn. Wasps gather round cracks in the skins, swollen like lips.

Perfect autumn days.

Sun out all weekend, burnished and bronze. Hard to sit indoors without either front or back door open. In the mornings, a slight chill, mist. In the evenings, sun low in the sky, the air hangs heavy, full of dew, creamy almost.

New (old) books of poetry have been arriving: Lee Harwood’s
Morning Light
and Julia Darling’s
Apology for Absence
. Both of them beautiful, humane, and full of risk, in form, language and subject matter.

I think I need to one-click
Sudden Collapses
and
Apology
for Lisa. Why isn’t Julia Darling as famous as John Diamond? She has written two of the best books on cancer you could get your hands on. The answer is that she put it into poetry and poetry doesn’t sell. Every waiting room should have one: when I get to be king I shall make this law.

At a party on the weekend the phrase I heard myself parrot most frequently was: ‘I’m just starting to feel the side effects now.’ I watch them glazing over at the prospect of another full-length, all-warts, descriptions, so reign myself in. I just say: ‘Yeah, a bit of tummy trouble, and tiredness, of course. They told me to expect it.’ Then they say: ‘You look great with hair.’ (I’ve noticed that it’s mostly men who say this.)

The truth is, a ‘weekend off’ from the treatment notwithstanding, I’m steadily feeling worse as the radiotherapy progresses. Leaden legs, breathlessness as I walk the stairs. And now, in spite of my tiredness, broken sleep. I find I lie
awake, unable to get comfortable, and worrying, not about Life and Death, but about things I did and said twenty years ago, and over which I have no control. After a few hours tossing and turning I find myself waking up into complete clarity for five minutes, then, just as suddenly, falling asleep again. I wake up exactly one minute before the alarm goes off with the weather, thinking it must be half-four or five. It takes me ten minutes before I can move and go and make tea.

I met with Perry today.

He told me three key things:

• that he is not expecting any real change in the size of my tumour as a result of the radiotherapy. The real purpose of the current treatment was precautionary, to ‘mop up’, as he called it, any strong active cells which might still be present on my lymphoma. He said for radiotherapy to change the size of a tumour was ‘highly unusual.’
  
• That he won’t be scanning me until three months after the treatment has finished. This is because it takes three months for it to become clear whether or not the tumour has started to grow again. This means I won’t know whether the tumour is behaving itself (i.e. not growing) until late November/early December. And even then I won’t know if there is still any residual activity left on it. I will have to hope.
  
• That at the last (PET) scan in June my tumour ‘unfortunately’ was ‘somewhere in the middle’ between zero activity and visible growth. He told me that in order to call a disease cancer the cells need to be over a certain percentage, a threshold if you like.
  

It all left me feeling rather flat.

Once again I marvelled at how the policy of gradual disclosure allowed me to be informed only now, as I start to
feel sick and exhausted again, that the expected outcome of radiotherapy was not shrinkage of the tumour. Ditto the line about the percentage of cells needing to be present before it is called cancer. This means after all this there still may be a few rogue cells left (the parallels with terrorism are not facetious), just not enough to say ‘I have cancer.’ I find this amazing. I may be about to enter the grey area of remission, whilst still living with cancerous cells inside me.

Mid-morning.

Have just come back from being zapped. ‘We’re taking photographs of you today,’ the young Australian radiographer told me.

I learned afterwards that they have in fact been taking one of these each week. ‘Partly it’s a legal requirement,’ she said. ‘Quality assurance. And partly we need to see if we’re hitting the right spot.’

Then she explained the reason they don’t scan me until three months after the treatment has finished is that ‘It takes the body that long to settle down again. We’re stirring everything up, pretty much. And also, it (the radiation) goes on working for two weeks after we stop. So we need that space.’

‘Hence the tiredness afterwards.’

‘Exactly, yes.’

Again, gradual disclosure. And only because I pursued the conversation as I pulled up my trousers. This was the first time that someone had explained that the treatment keeps working inside of me after it is officially over. I suppose I could have looked it up on the internet. (Maybe I should have?) But shouldn’t I have heard it sooner than this?

While waiting today I watched nearly an entire episode of
Frasier
. I cursed myself for not having set the video. (I needn’t worry: I have four episodes stacked up on the digibox, in anticipation of the kids’ full return to school tomorrow.) It made a
change from what I usually sit through, Dick Van Dyke hamming it up in a white coat in
Diagnosis Murder
. This must go down as the least appropriate thing to watch in a radiotherapy waiting room – skulduggery in ward 56. Either that, or it’s so inappropriate it’s inspired, an oblique way of making you think your own situation isn’t so bad after all.

‘I hated it.’

I was talking to the radiologist as I re-buckled my jeans after treatment about yesterday’s TV drama,
Losing It
, staring Martin Clunes as Phil, an advertising exec with testicular cancer. The drama followed him from discovering something ‘down there’, in bed with his wife, to diagnosis, to the operation (he ‘lost it’), right through to radiotherapy then also losing his job.

As portrayals in the culture of cancer go, it was pretty good.

What I liked was this: the way it affected his whole family – ‘It’s not just your cancer, it’s my fucking cancer, too’ was the standout line, delivered by a very well acted ‘stroppy teenager’ daughter. Clunes was also excellent, especially as he grew tireder.

Best of all, I thought, was the wife, the strain of keeping the plates of job, family and cancerous husband spinning finally revealing themselves in private tears outside the bathroom one night – witnessed, of course, by the younger child, aged 6.

For a mainstream midweek TV drama, it got nearly everything right.

What wasn’t right (this is what I began my discussion with the radiologist by saying) was that Phil gets told everything pretty quickly. He seems to move from GP to ‘specialist’ to pre-op hospital gown all within ten minutes. I know they have to compress time because it’s a drama, but there was
no sense here of time dragging, the aeon it takes to get your pictures back from the chemist telling you whether you have cancer or not.

Also, his ward was incredibly quiet. OK, so he had Dave in the next door bed asking him if he had done ‘that Guinness ad with the horses,’ but no one else that I could see, no groaning through the night and no obs nurses waking him up every two hours. Give me a break.

And the bit that the radiologist hated? Having got the PET scan scene right (‘Put your arms above your head and bring your elbows in so we can fit you through the tube’) they got the first radiotherapy treatment all wrong. Again, I know they made him say ‘Will it hurt?’ and ‘Where are you going?’ and ‘What’s that noise?’ (when it started buzzing) for dramatic effect, but it wasn’t at all realistic: he would have been told all of those things before treatment even commenced.

Not that you
are
told everything every step of the way. I said this to her. She looked surprised and a little worried. I had in mind of course that I’ve only just been told that they aren’t expecting shrinkage of the tumour. Gradual disclosure has its advantages, I suppose. It surely lies behind the decision not to say ‘You’re done’ or to say that you are cured. You can just ease back through different shades of grey until ‘normal’ life returns. That’s their assumption, I’m sure of it. Except I can’t see life ever being normal again.

The moment in the drama that cut me in two? When Phil asks how long he’ll have ‘it’ for and the oncologist frowns and says ‘Five years’. The look that goes across Phil’s face at that moment, then across his wife’s – that was completely real, a reaction beyond words.

Just back from radiotherapy, my last one. In my card to the radiology team I said ‘In the nicest possible way, I hope I don’t see you soon.’ I wonder if it will go in their corridor of fame.

The radiologist was very apologetic about reacting to
Losing It
in the way she had.

We talked while I undid my jeans, then sat on the table, still talking. I noticed the others had left us alone. I wondered if she’d planned it – ‘Just give me five minutes at the start, it’s his last one’.

She asked if it raised issues for me. I took a deep breath and tried not to use the phrase gradual disclosure. No point in upsetting them on the last day. I explained how I’d only just discovered the other day that the expected outcome of the radiation was not tumour-shrinkage but cell destruction. ‘Clinically, it doesn’t change anything. Not now I’ve been treated, nor the probable outcome. But it does change how I perceive the disease. It must have been written down somewhere, but no one actually said it. And in terms of the drama I was surprised they didn’t have at least one scene with him sitting by the phone waiting for news. That’s all I meant. Otherwise it was great.’

A stiff, tiring week. Days alternately blowy/rainy and sunny/warm. Legs: no energy in them. Breathless at the tops of stairs. Knees: sore and achy. Sleep: broken, every night. (I wake up, pee, then lie there praying for Lisa to get better). Dreams: the bad ones return – the lecture/seminar/poetry-reading-dream, my briefcase and the auditorium empty, after I arrive late.

Last night, amazingly, I had my first dream about cancer.

It went like this. Karl and I were talking and walking in ‘Hospital Road’, the main arterial corridor which runs the length of the hospital, from Haematology down to orthopaedics. Quite casually, and as though I already knew, he told me that the radiotherapy hadn’t worked and that I would have to have an even stronger course of the same. One so strong, they give it to you through water, in a specially designed swimming pool …

I woke up feeling utterly drained, and worried. Karl said over his shoulder: ‘The thing is, Anthony, it’s a fucking nasty disease and you had it bad. I’m sorry, but we’ve got to make sure’.

Andy has been round for coffee. He handed me a copy of his fabulous looking new book,
The Fall of the Rebel Angels
.

Lots of gossip here as well – I haven’t seen him for ages – but more importantly it was so good to natter about books and writers in that
other
way, enthusiastically.

As he was leaving he told me he’d read my fox poem at Arvon and that it had been received with uproarious laughter. ‘But who is it?’ they all asked. ‘We’ve never heard of him.’

I discussed how cancer seems to have killed off my ambition with Jean, who visited yesterday. ‘Well, yes,’ she said, not prepared to concede to me. ‘Except we’re not ambitious
really, are we? Only for the next poem. The rest is meaningless.’ And then she told me a story about a poet who had rung her up to ask her what they should do to get themselves a higher profile.

I tried to explain to her that having the book in the world but not having had a chance to promote it was very trying. ‘Your time will come,’ she insisted. Maybe she knows something I don’t. Then I confessed to her I’ve begun writing poems again and feel tempted to enter the Poetry Business Pamphlet Competition. ‘What have I got to lose?’ She said people would one day
need
– that was her word – to read both my prose and poetry accounts of having cancer, and that I shouldn’t spare myself in choosing one over the other.

On Saturday afternoon we strolled into town to look at Lisa’s new textile hangings in the Royal Albert Museum. They are beautiful, unquestionably the real thing. As we mounted the staircase where they hang, I guessed correctly which two were hers and felt smug. A wonderful sudden moment of peace with Tats on the sofas in the gallery looking out onto them, as if cancer were in neither of our lives. One of the hangings is called
All Lives All Dances All is Loud
, which is a line from an old forager song from the area they live in. I can feel a poem coming on.

I spoke to Karl today to arrange my stem cell collection. He is back from his rock collecting trip to Iceland, and is full of it. As his house will be, if his description is anything to go by.

He greeted me warmly, immediately making me feel nostalgic. Nostalgic, for a time when I had cancer and felt shitty? What am I saying? But the truth is that I miss it, the contact and the banter on the ward, the being asked how you are and told you look great even though you know you do not.

Robyn is right. The early part of remission is hard – not
just because you feel wiped from radiotherapy, but because it is lonely. Your visitors dry up. After all, you’re not dying any more. The phone stays silent. (Except for your parents.) Thank God for
Frasier
and the internet.

I’m booked in for mid/early November. GCSF injections from the 10th–13th, for three days, for the collection. Usually they get this in one go, he told me, but you never know, so block book the rest of them out.

He asked me how I was and didn’t miss a beat when I said knackered. ‘Yup, you’ll feel that for a while,’ he said. ‘Probably get worse, you know.’

‘Really?’

‘Yup, for a while.’

All I could think of was that earlier in the year this is what he went through himself.

A walk into town to revisit Lisa’s hangings in the Royal Albert Museum. I sat for over three quarters of an hour looking and listening as people came and went. I filled three pages with phrases and the beginnings of stanzas, and felt like a writer again.

An odd thing in the bath today. A perfect rectangle of denuded hair, in exactly the area they zapped me during radiotherapy, just to the right and centre of my tummy. How did one of the cool young Australians put it when I asked her why I didn’t have any sunburn there?

‘Let’s just say the layers of, er, that you have a few more layers, of, er, fat there, er, than elsewhere on your body.’

October already.

A typical Devon weekend, hilarious stairod rain, then sunshine, then grey clouds and winds. There are two apples left on the tree. The path up to the house is a cider-smelling orange quag where the crab apples have been trampled into the gravel.

Last Tuesday was stunning, clear blue sky, sun genuinely warm.

I remember, because I walked by the river for a little way before having to throw the towel in, exhausted. It was both exhilarating (it was too nice to be in the house) and depressing.

Today, after a grey start, is the same. But I won’t be going anywhere, except for milk.

It took watching Stephen Fry’s programme on telly, about ‘the secret life of the manic depressive’, for the penny to drop. Not that I suddenly think I’m bipolar, just that what I’m currently going through is the closest to depression I’ve had during this whole business. I didn’t get it with chemotherapy, even though I felt substantially worse; whatever it is with radiotherapy (I always want to say ‘radiation’) – it certainly seems to have flicked a switch. I wonder if this is what John Diamond meant in his book – he had radio long before chemo and said he got very depressed with it. The irony is, I’m not depressed about having cancer – they think they’ve sorted that. It’s to do with uncertainty, coupled with the fact that I’m feeling lousy but not officially being treated. It is very counter-intuitive. And nobody tells you about it. The tiredness, yes, is mentioned. But not how you
feel
. In a jokey email to a friend last week I said I was ‘sick and tired’ of it all, ha ha, as a general feeling of queasiness is also a daily fixture (though thankfully, so far, without any actual throwing up). But as phrases go, that pretty much sums it up. Perhaps it is worse, having had a glimpse of almost feeling normal over the summer. Another factor here is that everyone goes round saying how well I look all the time. Given that many people have said this all the way through my treatment, including the ‘waxwork’ phase of chemotherapy (© the kids), I am tempted to not believe them. But it’s true, even to myself. I have hair, colour, eyebrows. But what I want to say is ‘If only you knew.’ The line of Stephen Fry which brought this home was when he said ‘What people don’t realise is that on the outside I’m doing
what I do, being witty, urbane and charming, but inside my head I’m screaming for it all to end so that I can go back to bed.’ Straight after the programme we watched the first in a new series of QI, his new quiz programme/vehicle. It made me laugh out loud. But I also felt for him, knowing what was going on underneath.

I’ve had enough of ‘Fine.’

I am done with cheerful.

This unwelcome new side of the cancer experience is even more ironic given that the last two weeks have been extremely productive. Poems have been arriving, as Raymond Carver says somewhere, every day. (Perhaps this also explains why this is my first diary-visit in a week. I seem incapable of doing both.) But, as the Stephen Fry example shows, depression does not prevent creativity in those who have it, but rather, seems to foster it. No, it’s not that I am being creative that I find ironic; it is that through these first forays into putting my experience into poetry I am only just starting to realise what I have been through and how angry I feel about it.

The latter, in particular, has been a revelation. Not that I am angry with any one or thing or experience – just angry. In the poems it comes across as surface annoyance and irritation at what people say to you and how they expect you to be. But I know underlying this – as in the proverbial iceberg analogy – is a vast hidden mass which cannot (and must not) be seen above the surface. Until now, that is.

Buried on p. 30 of yesterday’s
Observer
, an article by Karol Sikora, medical director of Cancer-Partners UK and formerly Professor of cancer medicine at Hammersmith.

Entitled ‘It’s time to take the politics out of cancer’ the piece hit me on several levels. (I’ll come to the politics bit in a minute.)

Firstly he gives an extremely clear explanation to the lay reader of what is going on when a patient is diagnosed:

I wish I’d had this kind of thing to read back in February; though Felicity and Karl’s oral explanations said more or less the same thing, there’s something so transparent about this which I find bizarrely reassuring.

Secondly, he has no time for what politicians are doing for cancer sufferers as a whole. The ‘media frenzy’ over Herceptin took hold earlier this year, the Department of Health stepped in ‘without waiting for our drug regulators’ (NICE) assessment and decided that it should be available for all suitable breast cancer patients.… This is crisis management driven by political imperative.’ Taken to its extreme, as in Israel a few weeks ago, this results in the kind of behaviour from ‘lobbyists’ where they go on hunger strike until the decision to make a ‘wonder drug’ available is brought forward, irrespective of cost.

His third point is that we are now living in an age where we view cancer as a romantic disease. To make this point he refers to Susan Sontag’s
Illness as a Metaphor
: the Victorian poets had TB, the Eighties brought HIV/AIDS, and now we have cancer. His question is this – and it’s not a comfortable one. Knowing as we do that not all cancers are equal (he cites the example of an old man dying of prostate cancer receiving different treatment from a woman of 40 with breast cancer) is the price we put on treatment – i.e. life – determined by ‘the political importance’ of the disease, by romanticism or ‘robust analysis of [each drug’s] cost-effectiveness’? The key phrase here is ‘political importance’. Breast cancer, or, specifically, the type treatable with Herceptin, seems very ‘hot’ just now. But one day, if predictions are correct, it could be NHL. I have an interest in this, because Rituximab is just one such drug or agent on which NICE will soon be deciding to promulgate – or not. At the moment it is not cost-effective
to give it to people with indolent NHL. But what if rates of diagnosis of that start to multiply (i.e. it becomes high profile) or someone famous is diagnosed with it? Is it right that they should have it, even if their chances of survival are not necessarily improved by taking it?

The radiotherapy department has just rung to ask how I am. I told them I was feeling increasingly sick and tired (ha ha) the further I went away from the treatment. But I couldn’t say I was depressed. I just couldn’t. They said to drink lots of water and to call if I needed to talk. It’s well-meant advice. But we both know I’m not going to do it.

A beautiful blue autumn day. Crisp morning air early on and ‘plentiful dew’ (Jaan Kaplinski).

I wonder how far sensible discussion of cancer will ever be possible in this country. For every Sikora piece there is a Darren Clarke’s wife/Kylie’s new haircut/Caron Keating biography waiting, like one of Medusa’s snakes, to take its place.

The real problem here is that it isn’t always these popular figures who are responsible for ensuring that our language seems destined to continue dealing with cancer in a
neoromanticised
/idealised way, i.e. talking only of battles, fights and bravery. Last week I watched one of those ads on telly (like the current one for giving blood) which it is hard not to be moved by, by Cancer Research UK. Well shot, beautifully chosen music and graphics. The phrase they chose to leave you with? ‘Help us in the battle against cancer.’ It seems to me we should distrust this promulgation of war imagery most thoroughly. Either that, or every disease, from HIV/AIDS to the common cold, should become one. I’m not in favour of that either. I think it would lead to a permanent post-Diana-style sob-fest fetishisation of just about everything. But it might be more honest.

As one of the assassins gunned down by Matt Damon in
The Bourne Identity
says ‘No one tells you about the headaches.’ On top of the queasiness bracketing each day at breakfast and supper, I wake with an absolute shocker, worthy of a good night of Otter at the Hourglass. But no.

Linda Southwood came in for about three minutes yesterday afternoon and left me feeling both puddle-like and less alone. She is ten years into her own (breast) cancer remission now, but remembers the treatment like it was yesterday. ‘Chemotherapy made me feel like a princess,’ she said. ‘During radio I felt like a pork chop.’ This ought to go at the front of cancer treatment text books for medical students. I welled up across the kitchen table as she spoke: ‘I know they had their sums to do each time, so they didn’t cook me, but they could at least have asked how I was. On the last day one of them said they liked my cardie. It cut me open.’