Sleep

For once in my life I’m watching a rugby match. This is not a thing I do lightly nor do often. Not that I’m opposed to the sport – rugby was something I once played – but it’s the watching of it, en mass, and the tribal shouting that I find hard. Hysterical commentators. People wearing stove-pipe hats and with their faces painted. Overweight grown men dressed in the tight sporting kit of their teams. Chanting drunks. Middle-aged women in lycra carrying inflatable dragons. Kids dressed as daffodils. The whole deal gets to me. But not today. Wales vs. France, the arch enemy. It’s the 2012 Six Nations Grand Slam which Wales are about to win. And how.

I watch the game on my wide-screen television, polymyalgia subdued for once, a flicker just below the surface. Once the game’s done, an hour and half or so later, and the world has erupted in celebration of Welsh victory, I realise that I’ve been out of the room to the toilet at least 8 times. That’s a lot. Even by my standards.

During the night I shiver, can’t get warm. Then I overheat, can’t get cool. Something isn’t right. Pain in the bladder. Pain passing water. Pain standing up. Pain sitting down. The GP decides the symptoms are those of classic bladder infection. Prednisolone predisposes the taker to infection. The immune system is suppressed. Polymyalgia triumphs again. I spend the week fighting.

Hello toilet my old friend, I’ve come to talk with you again.

The frequency of urination increases. Sleep dissolves into a rapid fire set of getting up. Stumbling through the night’s half-light. Checking the quantity. Pain. Discomfort. Constantly feeling there’s more to come. Then getting back into bed again.

The chemist is five minutes’ walk away. I rush down. There they tell me that all those neat cures offered for sufferers of cystitis won’t work for men. Men have a different structure. Inside, you know, the pharmacist softly says. You could try these. She offers me some sort of branded sodium powders. They stop the stinging. I know it says for women only on the packet but you can ignore that. They won’t do any harm. I try them. Nothing happens. They might even have increased the rate of going, and I’ve got the urge for that. Joni Mitchell once again.

The first anti-biotic used to fight the invader, Trimethoprim, fails. The world closes in. Then Nitrofurantoin, prescribed by the GP after the usual performance of getting an appointment and taken as a sort of second front, starts to work. Turns your pee bright green. Kas, the pharmacist turned tea shop owner at the Waterloo Gardens Tea Shop who I meet in the park on the way back warns me about this. Lloyd Robson sends me an email suggesting that this might be what happened to Rigsby in the film of Rising Damp. Technicolour waterworks.

Passed urine should look like a glass of chardonnay. Mine resembles greengage slush puppy. But like all things, it won’t go on for ever.

By day nine I go out again. Can face the world. Sue reminds me that at the start I was pleading for hospitalisation just to get away from the pain. Now I can walk about in the sun. Prednisolone you two faced whore. You’ve done for me again.

The dose drops. I’m now on 8 mgs / 9 mgs alternating days. The GP thinks it’ll hold the polymyalgia back and it does. So far it has. On a planet which offers two places to go – polymyalgia or bladder infection – which would you choose? At the time of specific suffering the answer is always obvious. But stood back a bit it really is hard to say.

Fear

As a consultation this one has nothing out of the ordinary about it. The clinic is as full as it ever is. People on electric wheelchairs and crutches, the out of shape struggling for breath, the aged lounged in the chairs, the lost, the depressed, the distressed, the misshapen morass of the lumpen majority. Me too. I’m one. Out of shape because the Poly Myalgia (PMR), despite my best efforts, has held me so far back.

We play the expected game of musical chairs. Sit outside for fifteen minutes. Name called. Led into an inner waiting corridor. Name checked. Weighed. Asked how you are today, love. Sat there for a further fifteen. Then called, if you are lucky, in to see the consultant. This little dance is something to do with an Assembly directive on waiting times. If the local NHS can get its patients to queue twice for the same appointment then waiting times will be immediately halved. All delivered with a pataphysical logic of which Alfred Jarry would have been proud.

Only part two, the lounging in the inner waiting corridor, takes one hour fifteen. A bit longer than I might have hoped. But I do manage to read almost all of Jasper Rees’s Bred of Heaven – “one man’s quest to reclaim his Welsh roots.” He does this by learning the language. Been there. He’s a brave man.

When my name is finally called I find myself ushered into a small room manned by a doctor I don’t recognise. The consultant is on holiday, she says. I’m standing in. You don’t mind a few students observing, do you? I look to my left and see a pair of them, young, scruffy-haired, eager faces, minds at the ready.

We proceed. It’s clear the stand-in hasn’t read my file. We go round the houses for at least fifteen minutes with me having to describe my whole medical history and then the onset, diagnosis and treatment of my PMR so far. In fact it’s a little more than round the houses. We go round the whole town. I mention that earlier I’d been diagnosed with what subsequently turned out to be a mild form of bladder cancer. Under treatment now, controlled, and with a good prognosis. Ah yes, says the doctor. Tell me more about that. I do. I tell the whole story: discovery while in America, bleeding into the portaloo at the Cherokee Blue Grass Festival in North Carolina just as Ralph Stanley came on, the fear, the visits to US Emergency Rooms, the rising panic, the American scans and consultations and you’ll be okay, son, and the trip home back to the arms of the loving NHS, carrying my American CT scans under my arm. I leave out the bit about how I turned the whole thing into literature (see Zen Cymru by Peter Finch, Seren Books, 2010). She might get the wrong idea. She might expect the present experience to end up as a poem or be used in a blog somewhere. Perish the thought. The students make notes. The doctor consults my file.

We think, she then says, using the royal pronoun, that the cancer has migrated from the bladder to your spine. Bladder cancer can do that. She looks down at the file while I wobble slightly. My chair has assumed a sort of super real state and feels unmovable, impossibly hard, frozen in time, locked to the ground. It probably hasn’t migrated, she continues. That’s a worst-case scenario. But we need to consider it. I am going to send you for some tests to fid out for sure. We need to look at the bones of your spine.

But I’ve had bone tests, I protest. Bone Density Scans, X-rays of my bones, more bone X-rays and, last Saturday, an MRI Scan. It’s Monday today. The results of that experience and half are not yet through. You’ve had an MRI test, the doctor asks? She’s asking me? She has my file in front of her, doesn’t that tell her? I nod. Okay. The MRI scan will provide a definitive answer. When the results come through I’ll phone you. When will that be, I manage to ask? In the next two or three days, she says. NHS imprecision floats. Now, let’s move on to consider your dose level with prednisolone.

Prednisolone. Do I still care? I’ve got the big C now hanging over me like a dark and evil phantom. Already the sun has vanished. Soon the rest of the world will also shut down. Am I concerned about prednisolone now? I guess I should be. I force myself. I make myself listen.

I want you to reduce the dose more slowly now, she’s saying. Go down from 10 mgs to 9 mgs on alternate days. Do that for two weeks and see how things are. If things are okay you can then try taking 9 mgs daily. At these lower levels we need to make lower incremental changes. I’ll book you in for another consultation in four months’ time. So she thinks I’ll live that long, does she? Better than nothing.

I find myself then in the long UHW corridor among the usual hoards of patients and medical staff all bound for somewhere or nowhere. The purposeful mixing with the lost. I’m clutching a cardboard fragment, torn off the end of a box that once contained latex gloves, with a telephone number biroed on it. This the doctor gave me as I left. It’s the number of the department secretary. I can ring her if something goes wrong.

I sit at home in a state of cold, unmoving silence. There’s a world out there, apparently. But I’m not part of it. I look up bladder cancer, spinal cancer, secondary cancer, cancer migration, cancer treatment and cancer prognosis, all on Google. I then immediately wish I hadn’t. The information uncovered is unclear, contradictory and mostly dark. I make a few phone calls, family, get shocked responses, and then sit staring into the empty distance. My usual habit on returning home is to put on some music. But today I haven’t put on anything at all.

After thirty-six hours of this, including a fitful sleep and much prowling of the house in the deep of shudering night, I find myself at the end of something. The walls seem nearer to me than they once were. The sky is bright white and featureless. The mind churns back through the same furrow once again, the words about migration and it can do that turning and returning.

Suddenly I boil. I can’t take this. Someone out there in the vastness that is UHW knows what my MRI scan showed. They have the answer. And it’s my answer. My spine. My condition. I should know it too. I pick up the phone and dial the department secretary. Manage to press the wrong buttons. Dial again. Engaged.

I take a breath and try once more. The line rings.

The secretary is great. I tell her the tale, my voice as steady as I can make it, and she checks my on screen file. Yes, she says, the MRI result is in. I’ll get a doctor to ring you straight back.

I replace the phone and sit by it. How long will this take? Ten minutes? After five the thing rings. It’s a recorded voice trying to sell me loft insulation. To speak to one of our operators press one. I groan and put the receiver back down.

After sixty minutes and a further nuisance call from someone claiming to be my insurance company who begins by asking me how I am today, a certain sign that they are about to try to sell me something next, I snap. I call the department secretary again.

She hasn’t rung you? Hang on, I’ll do some chasing. There’s a whole bunch of muffled clicking and distant voices and then the secretary tells me that the doctor is in consultation and with her final patient and will call me back immediately that’s over. Won’t be long now.

It’s a further thirty minutes actually. And then I get the voice of the stand in on the line. You’ll be pleased to know that it’s not what we thought, she says. Not cancer? No.

I breathe. I realise that I haven’t been doing this since the phone started to ring. God. Not cancer. I interrupt and ask the doctor to repeat. Tell me again it’s not cancer. You’re certain?

Look, I’ve already told you that, no it’s not, she says. Sternly. Bedside manner not really all that evident. There is a cyst, however, something we call a ganglion. It’s in the lower part of your spine and is pressing on the nerve. That would account for all the non-polymyalgia pains you’ve been experiencing. It can be treated. You might need an operation. I’ll have to talk to the consultant next week and get back to you. Is there anything else? No, I manage to say, thank you. She’ll be going home now. What will I be doing?

I sit for a moment, sort of stunned. Then I get up and I dance. I dance with great big steps up and down and up and down the room.