An Open Letter From One Patient To Another

[A friend asked me for advice for her brother, who’d been recently diagnosed. So I opened a bottle of wine.]

Dear W,

I’m so sorry to hear the news – good luck with the operation. A has asked me to write to you with some advice. I’m not a big fan of giving advice, I’m afraid – I dread it actually – but I remember feeling lost, pretty much from diagnosis onwards and nothing I found online seemed very genuine. There was lots of talk about little things, like courage or religion, but not very much about the big things, like chatting to family or what it actually felt like. The below is an effort to at least give a badly drawn map as per Holub’s poem. It may not be a route to anywhere sensible but it is, at least, a route that has been taken.

You’ll do it wrong
I spent most of my time feeling like I was being told off by, or letting down, the people I loved. It wasn’t until in remission when talking to a charming woman at the Marsden hospital, a fellow patient, that I learned we all do it wrong. We were laughing about how cross people got with us. As she said, “I’ve just never managed to have cancer the way people want me to.” Well neither did I. And I suspect neither will you.

Tick, tick, boom
For me, the period before the operation was surreal but fine. Lots of phone calls, medical records, CT scans and the like. Then hospital. Then waking up. And then the slow process of it sinking in. When I was asked before the operation if I was OK, I could honestly say yes. Everyone else seemed far more upset than me. It was only afterwards, when everyone was breathing a sigh of relief, that everything began to unravel. And at that point, everyone else tends to look a bit surprised and ask “What’s wrong?”. It took me a while to realise that there is a delay. It only starts sinking in when most people think you should be fine. I wish I’d been ready for that.

Brief your nearest and dearest
Tell them the following: “Don’t stand on ceremony. Don’t wait for permission. Don’t worry about how I feel. I need your help.”

Ask them to let you know they love you. Ask them to actually say it, not just assume it’s understood. They’ll be running round showing you they love them by helping but you’ll not feel very lovable and it’s easy to forget. And tell them you love them too. Even when their running round isn’t helping.

Much of the discomfort I felt came down to a combination of my not wanting to ask for help and (I think) my family, my girlfriend and my friends not wanting to intrude or do things wrong. That was a two-way problem. For me, as the delayed reaction kicked in, and as I started really needing help, I felt more and more of an imposition. Hospitals made me feel like meat, mortality made me feel like a dark cloud. As a result, the one thing I never wanted to have to do was ask for help. Or ask for visits and company. I didn’t want to have to ask for meals to be prepared because chemo was making me sick and exhausted. As far as I was concerned, it was so obvious I needed help and support. I hated feeling put in a position where I had to ask for it and actually say something like “Will you come to chemo with me?”

The flip-side, and one I was too self-absorbed to see, was that others needed to feel that they could help and that they were doing things that were useful.

I was lucky in the end. I didn’t realise quite how lucky till a little later. Regardless of how unpleasant, grumpy, and lost I was, friends, family and the woman I loved just turned up. They didn’t ask for permission, they just said they were visiting. They didn’t ask what I wanted to read, they just brought things.

So tell them to turn up whenever they want. I far prefer the memory of struggling to work out what to do with a compulsory two tubs of chicken soup than wondering why colleagues 5 minutes down the road didn’t find time to visit.

It’s not a cold
I suppose beforehand I’d thought I’d get cancer and then get better in the same way you catch a cold and then recover. You don’t recover, in that it won’t be the same you. You won’t necessarily be worse, or weaker, or better, or stronger, but you won’t be the same. As my Dad said, more succinctly, when I asked him about his prostate cancer and how he coped, “mortality’s a bitch”.

And chemo isnt a sore throat

I’m normally quite a good patient. I like reading and loafing around in bed, I cope well with concerned people stroking my head and bringing the odd loving cup of tea, and I don’t grumble about feeling ill. For some reason, be it the brave rhetoric or the big black precipice of what might be all to soon, chemo made me a fly in a jar. I insisted on doing more than doctors recommended. I started going out more and more, to concerts, art galleries, the theatre or just dinner. I burnt candles at boths ends and I kept turning up at work, even when colleagues were saying it was OK not to and even when my nearest and dearest were getting cross at me for being too cavalier. Every 3 or 4 weeks, my routine hospitalised me, but as soon as I was out, off I went again. In lots of ways I don’t regret it, but I didn’t realise how exhausting that was for those around me. I was (again, sigh) too self-involved to see that, while I thought that my suggestions that, say, an evening at Ronnie’s was just what the doctor ordered, it put those with me  in an impossible position. If they advised against yet another evening out, they felt unsupportive. But if they came, they couldn’t relax, and feel unsupportive for that.

I put people in a double-bind too often and I wish I’d been less selfish.

Company not consolation
Most people I knew didn’t know how to deal with this sort of illness. Some, and it is usually your closer friends and family, are happy just to squeeze a hand or sit with you and talk crap. Because it is a serious illness, though, other seemed to feel they needed to be more sincere and heartfelt than they normally are. You will almost certainly be called brave, stoic, maybe even a soldier or a trooper. You may hear that it’ll be fine, that you’ll get through this or that people are there for you, whatever you need.

The difficulty is that if, as I did, you spend more than a few nights weeping, feeling scared and feeling alone, all of these platitudes only serve to highlight the fact that it is you, and not them, that is ill. It’s an odd feeling having people visit and them leaving with you feeling worse. But however awkward, it is worth remembering that all the visitors do mean well. It is company, not consolation, that helps.

Hunt out the happy people
There seems to be a tribe of people who are happy. Not in a forced way, or for show, just happy. Children are like this naturally. I loved seeing my nephews destroy my hospital bed. I loved seeing Julia and Luke turn up and be more cheering at that age than I could ever have been.  And it’s why I kept on coming into school against all advice.

I was lucky enough, too, to meet several in hospital. Beh Zad, who was so cheerful he wanted to chat all the way through the night. Nigel, who’s behind-the-curtains running commentary, during my first barium enema gave me and the nurse fits of giggles. More poetically, I had a bed opposite a cabbie who was a member of this tribe (despite having a stomach that look liked it had been napalmed). I still remember laughing at his argument with his neighbour (also, bizarrely, a cabbie)

Him: There’s blue sky up there behind the clouds.

Neighbour: And what’s behind that? Space. Infinite bloody nothingness.

Him: And stars, mate. And stars. Infinite bloody twinkling possibilities.

The tent-pegs of hope
People of all walks of life will surprise you, in good ways. A dinner lady at work took me under her wing, a nurse burst into tears and gave me a hug, a cleaner in the hospital brought me an unasked for cup of tea, a fellow patient told me I had a good heart, my old babysitter was sister on one of my wards and a bowls champion called Jack came in to see if I was OK because he was worried about me. I found things easier if I made a conscious effort to mark these things down. They’re the tent-pegs of hope.

As a projection it’s almost certainly not going to map onto your circumstances. I do hope it might help in some small way, though and I wish you all the best.

Piers