Nine years ago today

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Nine years ago today I was diagnosed with non-Hodgkin’s lymphoma, a cancer of the white blood cells. Even though I have been in remission from my cancer for more than eight years, there is not a day that goes by when I am not aware of its presence in my life. Which is not the same thing as saying that I think about it all the time, or that I worry about it all the time.

I don’t. And I don’t.

It is to say that in mysterious ways I am still coming to terms with I am never not aware of the change that has happened to me as a result of having had (I hardly dare say ‘survived’) cancer, even though I still find it hard to put into words exactly what those changes are. I am not the same person I was before my cancer (how could I be?), but how far those changes have been wrought as a result of the effects of my treatment, and the long and often painful re-entry into ‘normal’ life, I find it hard to quantify.

Sometimes, all I can say is: It happened. To me. In 2006.

Which is good practice for a person like me, with my predisposition to look back so much of the time, at the expense of living in the present moment.

So, today I say: I am Anthony. I am here. I am here now. And where I am is not where I was, even though where I was still makes its impact on where I am now.

In short, I remember my old drama teacher’s advice: I breathe. And that is enough.

Here is my account of my formal diagnosis of cancer, which I wrote as part of the diary I kept at the time, now available in my memoir Love for Now.

 

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February 15, 2006

My consultant has twinkly eyes behind little steel-rimmed specs, and discretely expensive clothing. Her name is Felicity Carr. I addressed her from the off as Felicity.

I saw her before I met her formally, as they were taking my blood. In the bloods room a woman in a white coat sat in front of a computer next to which sat an enormous machine like an overgrown breadmaker. She poked her head around the door beaming and cradling a blue mug of coffee. ‘You must be my new young gentleman,’ she said. ‘I’ll be seeing you in a minute.’

§

‘I’m sorry to have to see you like this, under these circumstances,’ she began, ushering us into the chairs behind her broad desk. Her hand moved across to a dictaphone and clicked it to ‘on’. ‘Tell me your story, why you’re here.’

So I told her, eventually running out of words, through nerves, at the bit about my biopsy, as if it isn’t still fresh in my mind. Thank God for Tatty being there.

She is charming, but very direct. The most difficult moment occurred just as Janette, the specialist Haematology nurse, joined us. Felicity turned to explain to her: ‘This is my new young gentleman, Anthony Wilson, he has a high-grade lymphoma.’

‘I’m sorry, what did you say, was it ‘high-grade’?’

‘Yes, I’m sorry, I haven’t explained. It means active, aggressive actually.

This had the effect of moving the conversation on rapidly. She had said it was Non-hodgkin’s Lymphoma, and that, yes, it was a cancer, but that it was highly treatable, with a more than 83% success rate.  Funnily enough, she said, Exeter was a bit of a hot spot for it, with 40-50 cases last year.  I was going to have the opportunity to be part of a trial if I wanted, in my treatment.

‘So does that mean it’s bad?’

‘Well, actually, paradoxically, it means it’s easier to treat.’

‘Because?’

‘Because the low-grade or indolent variety are common to people older than yourself and they can last for years.’

‘Right.’

‘And you have B-cell, not T-cell, lymphoma, which, let me assure you, is much better.’

‘Good. But it is aggressive?’

‘Yes. Which means – I’m sorry – we are going to need to start treating you straight away. I’m afraid it’s going to be quite tough going for you for a while.’ She blinked, once. By this time I was fiddling with my wedding ring, my default nervous reaction, and I dropped it. And that’s when I felt the urge to cry, except I was trying to pick up my ring while holding eye contact.

I needn’t have worried. Tatty had got there first. There was a lot of searching for tissues, with Janette having to leave us eventually for a box she perched on the corner of the desk in front of her.

‘I’m sorry,’ said Dr Carr. ‘I know this is big stuff for you both to deal with.’

‘Thank you. No. Yes. I mean, it is.’

§

Dr Carr introduced us to my ward doctor, who will oversee my chemotherapy ‘infusions’.  His name is Karl.  He showed us the rooms where I will sit when they wire me up each Wednesday. A long line of men and women sat propped up with pillows and cushions, attached intravenously to drips, reading and doing crosswords and looking for all the world like they were at the hairdressers. I did ask her about the hair, as it was something I knew Shimi would ask later. She blinked again. ‘Yes, you will lose your hair. And there may be other side effects too, but we won’t worry about those for now.’

§

Karl is tall, skinny and almost shaven-headed. ‘It’s no secret,’ Dr Carr whispered two seconds before introducing him, ‘that Karl has had chemotherapy himself. For Hodgkin’s.  He knows what you’ll be going through.’

‘So you’re Anthony?’ he grinned. ‘And you must be Mrs Anthony.’

He turned to me again. ‘Don’t expect politeness here,’ he smiled, nodding backwards at the room.

‘I’ll bring my Chelsea scarf then.’

‘You and I are not going to get on,’ and he gave me a half-hug, his arm reaching round me, pulling my shoulder into him.

‘Fantastic,’ I said. ‘I wouldn’t want you being nice.’

§

Unlike many of our friends and family we have restricted ourselves to looking at a single website, lymphoma dot org, the official site of the Lymphoma Association.

You download a PDF file which tells you all the variants of the disease, their symptoms, treatments and side-effects.  I had no idea lymphoma was such a large family.  I lost count of the different varieties, hungry only for information about what the hell was happening to me.

I learned three things. The first, which Dr Carr had also told me, is that no one knows how you get NHL, or where it comes from.  Second, the kind of NHL I have, Diffuse large B-cell lymphoma (DLBCL) is the most common kind, with about 3,000 new cases per year.  Lastly, NHL is a cancer of the white blood cells.  In my case, it is the white blood cells which produce the antibodies which fight off infection.  Both literally and metaphorically, my body has attacked itself. No wonder people reach so easily for the description of cancer as a ‘battle’ which the patient must ‘fight’.

I toyed with finding out the difference between large B-cell lymphoma and large T-cell lymphoma but gave up, my E at ‘O’ level biology coming back to taunt me.  All I need to know, really, is that I’m very ill and that the treatment to make me better is going to make me feel even worse.

§

Later we watched Bruce Almighty outtakes with Bendy, who is off-school. There’s a deleted scene where Bruce is being shown by God the outcomes of his having said ‘yes’ to the world’s prayers. One lady, on being told she was bankrupt, slipped on some milk in a supermarket, sued and bought a condo in Florida. But God said that if he’d answered the prayer properly she’d have had to swallow her pride and talk to her sister and learn some humility. A boy routinely being bullied at school had his prayer answered and became a wrestling champion then a steroids addict instead of the outstanding poet of his generation. ‘The bullying was his material and you took it away from him. Sometimes,’ he went on, ‘to make a good picture you’ve got to use some dark colours.’

—————

You can order a copy of Love for Now here

14 comments

  1. Sam Randall

    Hello Ant, Here you express so clearly the way I feel about paddys condition. The experience of paddys diagnosis and treatment process still shadows everyday, but as you say, not in a depressing way. It is just paddy of who we are now and the thinking of it every day is part of acceptance and recovery and moving on too. Lots of love, Sam

    Liked by 1 person

    • Anthony Wilson

      Hi Sam,
      I like shapes as well.
      But shadows is not negative either.
      You can’t have what you went through, nor cancer, without them.
      How I think of shadows is crucial here. I choose to think of them as a necessary part of the experience, but not as threatening, mysterious and out to get me.
      They just are, just as I am.
      All love as ever
      Ant

      Like

  2. jazzcookie

    Dear Anthony, it does not seem quite right to say Congratulations! for this particular anniversary, but I do want to celebrate it and say how glad I am that you’re here to write about it, to send us your own wonderful poems, to bring us word from the shores of other fine poets, and to help us see all that’s in the words on the page. We may have had the same drama teacher: “Breathe.” With love, Molly (in the process of moving to California)…

    Liked by 1 person

  3. Kate Bowles

    I never stop thinking about it either. When I was first diagnosed I ran into a colleague in the street who had had cancer and survived, and the first thing he said to me is “Now you know what will kill you.” I remember every detail of that moment, the colour of the bus stop, the heat, the sky. It felt like everything stopped. Looking back I realise that’s because it was the first candid, human thing that was said to me — oncology was all euphemism and data, and everyone close to me was burbling the same hopeful thoughts as me, while the entire culture was carrying on about battles and attitude.

    I’ve returned to this thought quietly in the period after treatment—the surviving time—to think about how on earth to live well under this shingle. I’m no less likely to be eaten by a shark than I was before, so maybe this isn’t what will kill me, but in a broad sense it’s now a fairly hefty part of who I am. Learning how to be at peace with this and live anyway, that’s the trick.

    I’ve just written a bit about this on the blog, in the context of Atul Gawande’s Being Mortal. Your thoughts would be really welcome.

    And congratulations! Here we are.

    Like

    • Anthony Wilson

      Dear Kate
      Thank you so much for your kind comments.
      I have just read your post for the nth time and finally commented.
      It is a wonderful thing you are doing, talking about the big everyday realities which somehow go unrecognised…
      I’m so pleased to discover Gawande’s book as well, what a find, thank you.
      In terms of the specifics of my own cancer, treatment and recovery, I look back at it through a kind of Art Frank lens now, thank ps to your recommendation. I can pinpoint who ‘recognised’ both me and my illness and what it meant for my family, and who did not. And this is something I still want to talk about, in fact need to.
      I’m about to DM you on Twitter to ask if you’d like to do a guest post here. No pressure at all.
      Thank you again
      As ever
      Anthony

      Like

  4. my78

    In one week I’ll have my fifth chemo session, and I couldn’t help but realise that you and I were in (most parts) the same position. Mine was also agressive- and had B cells. I currently am 1 month in remission- but I can’t help it but be afraid. I try to not think about it- how can we live happily if we are always thinking that bad things will happen? Even so- I can go out to take a walk, and be ran over by a car. We can’t know what tomorrow will bring us. We can only hope for the best, and hopefully, the best will come. Congrats on all this years of remission, I really hope we have than in common, too.

    Liked by 2 people

    • Anthony Wilson

      Thank you so much for taking the time to comment on this.
      I’m honoured.
      I do wish you well with the rest of your treatment, and with what follows it.
      As I have been trying to explain here, it is more complicated than most people realise.
      Uncomplicated and unconfined joy do not seem like realistic propositions.
      Wishing you life and long remission
      As ever
      Anthony

      Like

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