Coming Down The Up Stairs

Coming down the up stairs at UHW, just in front of the frightening full-length portrait of Aneurin Bevan in his overcoat, glowing like a warning to boarders, is a mother under full sail.  This one is wearing heavy flowing dark robes, a squalling child spinning at the end of each arm, a hijab wrapped tight around her full moon face.  She’s talking hands free, full pelt, and at maximum volume into a mobile that’s held to her ear by the hijab’s cloth.  Before her patients on sticks scatter.  I lean into the wall to let her pass.  You have to admire her style.

Outside the regularly ignored clutter of Trust notices banning smoking totally anywhere on the site have been supplemented by signboards that direct users to the newly provided smoking sheds.  These are also ignored.  The limp and the lame continue to smoulder and cough just outside the concourse doors, as they always have.  Gorgon guards.  Emissaries of the alternate world.

I’m back at bloods where history is repeating itself.  There are crowds.  Tickets fail to correspond to the numbers shown on the illuminated display.  The bandaged and the unable battle at the entrance, waving their arms, complaining about disorder.  Time flows by.  I does so slowly.  I read the contents of my wallet.  No book, mine left in the car in error.   Old receipts, a blue twenty, credit cards, bits of paper with phone numbers on them, my prednisolone users treatment card.  This contains stern and vital advice.  “If you become ill consult your doctor promptly.”  I’ll do that. 

Then I’m back at Rheumatology where my cascade of symptoms is noted and new tests talked about, done or booked.  Urine sampled.  BP taken.  Temperature written down.  Outside there’s a sun and it’s shining.  But the future is delineated with a mesh of new appointments and hours to be spent in long corridors waiting for my name to be called.

It strikes me then that none of this ever going to fully pass.  Life rolls from one failing to the next.  That’s its essential nature.  It arrives.  It shines.  It renews.  Then it falls apart.  All that’s in question is the speed at which this happens.  Slowing down the rate  is now my prime objective.  I shuffle in my seat, fish about in my pocket.  Come up with a mint.  Sure sign of age that.  Like admiring country and western music,  wearing hats while driving, and standing up when women enter the room.   A nurse does.  So I stand.  I smile.  Then I sit down again. 

How Do You Fill Your Life

According to the private publishers and poet Philip Ward life should be full of books.   For those who don’t know where to start Ward has compiled a list.  His A Lifetime’s Reading lists 500 titles that everyone should be encouraged to  get through.  At the rate of ten a year the quantity is not onerous.  Quite manageable, Ward thinks.  He does, however, allow his suggested texts to increase in complexity as the years roll by.   At my age I should now be consuming Ludwig Wittgenstein,  Giovanni Boccaccio, Nur Ad-Din ‘Abd Ar-Rahman Jami and Abu Bakr Muhamma Bin ‘Abdulmalik Ibn Tufail.  Just a few established mind stretchers that a person of my maturity should be able to manage with ease.

Instead I spend my waking hours navigating the health system.  Dealing with doctors, worrying about what they’ll fine, coping with the NHS.  Ibn Tufail practised medicine, it seems, but back in fifteenth century Cadiz, which is where he came from, they still used leaches and rather than check you by X-Ray they’d pour a mixture of tincture of serma, mercury and wheat germ down your throat and hope for the best.  Prednisolone was unknown.  Their cure for PMR pain was to cut into the muscle and let air into your legs.

I’m heading for X-Ray.  There are muscle pains in my limbs which are at variance with the kind that PMR delivers.  Mine don’t go away when you walk.  Prednisolone won’t touch them.  Instead they hover and pulse. 

The treatment is to be a couple of facet joint injections and a lumbar nerve root block.  The advance information UHW have sent me warns against having this done if I’m taking blood thinning agents (I’m not), tells me that I should avoid driving immediately afterwards and then sternly admonishes me in advance in case I fail to turn up.     

I’ve spent the morning at the gym trying to make myself younger and as it wasn’t raining I’ve also walked to the hospital rather than booked a cab.  I feel fit and awake.  But this isn’t going to last.

I present myself at X-Ray reception and am told by a man who looks a little like David Walliams that today my procedure is being carried out in the children’s department.  Down the corridor, follow the purple octopus.  I do.  And there it is over the door, pointing its tentacles.  You’ll be fine, says the Children’s receptionist.  Must be an NHS word that, fine.  Drummed in at induction.  Everyone uses it. All the time. 

I’m the only patient.  The otherwise abandoned waiting room, stuffed with a disarray of toys, colourful posters and child-friendly furniture feels like something out of JG Ballard novel.  There’s a dark otherness seeping in.  I’m beginning to recognise the signs.

The procedure itself takes around twenty minutes.  Local anaesthetic.  Needles into the lower back. A sensation of ice crawling down my leg.  Lots of encouraging words from the clinician.  The whole deal  is monitored on a sort of video x-ray machine although I don’t see this, lying as I am on my front.

Good, done.  You’ll be fine now.  We’ll just wheel you into the recovery room and let you rest for fifteen minutes.  Back soon. That’s the radiographer.  She is wearing a set of tartan-covered lead panels, a bit like the sort of things newsreaders wear when reporting from Afghanistan.  They are extremely fetching.   I’ll be fine soon.  I try to move my right leg.  Can’t.

And after fifteen minutes I still can’t.  I attempt to point my foot at my shoe and the limb sways and waves.  Misses.  Misses again.  It’s like trying to spear fish underwater.  The tartan clad  radiographer is back and with an assistant this time.  Together they try to get me on my feet.  Legless I sway  and they have to stop me from falling.  You have another fifteen, there’s a love, nothing to worry about.  You’ll be fine.

Fine, fine.    But I’m not.

I fish out my phone and decide to ring for assistance.  It’s obvious that I’m not going to get out of here unaided.  But naturally there’s no signal.  I stop a passing nursing assistant and ask if she can make a call for me.  Can’t.  No outside line here.  You hang on, the radiographers will soon be back.

Time passes.  The recovery room fills and empties.  Patients are brought in and wheeled out again.   Opposite a man who once might have been a miner or a steel worker, ancient tattoos on his arms, rheumy eyes, sits in a wheelchair.  He is having his procedure explained to him by a doctor wearing full operating theatre kit.  Scrubs, head bandana, hairy arms.  Anything else you want to know, Mr Jones?  Mr Jones shakes his head.  It’s all above me, this, he says.  You just carry on.  Right, says the doctor, we’ll be back.

I try to climb down off the recovery trolley, touch ground, and sway precipitously.  Mr Jones opposite looks alarmed.  I grab for the wall.  You stay where you are butt, Mr Jones says.  If you fall I won’t be able to help you.  He waves an arm which is attached to a drip.  His legs are covered with a blanket.

I do another 30 mins on the trolley waiting for the leg I no longer have to make a miraculous reappearance but it doesn’t.  I decide, then,  to make a break for it.  I’ve been here three and a half hours now.  Enough.  I get myself off and balanced against a wall.  Jacket half on half off.  Phone in my trousers.  Tentatively I try walking.  So long as I keep one hand on the wall I can just about manage it.  The missing leg is like a piece of rope trailing.  I haul away and get out into the main corridor.  It’s like joining the M4.  Floods of human traffic rolling in both directions. 

You okay, asks a passing nurse.  I look pained but nod.  Good.  You’ll be fine. Where’s the Concourse? I ask.  She points up a corridor that seems to run on for several miles.  I set off. 

Progress is about as slow as it can be.  I cling to the wall, stumble and half crawl. I’m among the hospital’s surging hordes now.  Uniformed practitioners, suit wearing surgeons, patients on sticks, bandaged, wearing dressing downs, in wheelchairs, on trolleys.  Some stop to help.  Most  look in pain or concerned or both.   

A fat woman in a motorised wheelchair slows.  Can I do anything?  she asks.   She does look concerned.   Doesn’t matter, I say, I’ll be fine.  Hell, even I’m catching it now.

Eventually after two face down falls and one episode of being helped into the lift by a  dressing-gowned man on a stick  I reach the concourse.   Gratefully fall into a seat and check the phone.  Signal at last.   I ring the love of my life for help.  Get me out of here, I say.  I’m overcome with a desire to get seriously down to reading  and have done with all this NHS stuff. 

It takes a good 24 hours for my leg to come back.  Two worried phone calls to the Out of Hours service and one to NHS Direct to check if I’m not going to be like this forever - Wait until tomorrow, they all say.  You’ll be fine -   and then there it is.  A leg that works.  It’s pain free and it holds you up.  Praise be Bin ‘Abdulmalik Ibn Tufail.  I get straight onto Amazon and trying ordering his books.  Any Tuhfat al-Ahrar or Fusus al-Hikam or even the hard to find Haft Awrang, once essential reading everywhere from here to Persia.  Nothing.

They were right, of course.  I am fine.   Bookless I go to the pub instead. 

The Urologists Stay Around

They’ve done a survey, the registrar tells me.  They’ve studied those who like to watch medical procedures and compared them with those who do not.  Do those who watch have a better outturn than those who hide their heads?  Turns out that if you like watching then the prognosis for you and your condition is likely to be pretty much the same as for those who prefer to look the other way.

I prefer to look the other way, I tell him.  Behind me is a video monitor on which the insides of my bladder are appearing in a sort of BBC 405-line colour.  Greys and submarine reds.  Dark and light in a fluid dance.  The internal world of Fantastic Voyage made real. 

What the urologist is looking for are signs of growth return.  My unending problem.  70%-80% recurrence normal.  It won’t go anywhere so long as we catch it.  The malignancy is low with these transitional cell polyps.  The consultant told me that in a bright moment in his room just off the side of Ambulatory Care.  Me in my gown waiting to go in for what’s become known as the procedure.  Flexible cystoscopy.  A camera and a light on the end of the flexible tube inserted  through the male body’s smallest orifice. Up the urethra and through the prostate to reach the bladder.  There’s local anaesthetic to dull the discomfort but the whole idea of the thing still makes me wince. 

This time you are clear, says the urologist.  Hasn’t come back.  There’s no bladder blockage either.  How are you getting on with the prednisolone?  The wonder drug.  The fixer of everything.  He asks this as he withdraws the apparatus.   I try not to look but still manage to see a device that looks as if it has been borrowed from the set of Alien, a snaking tube, dripping slowly as it uncoils through the air.    

I’ve got my dose down to 7 mgs daily, I tell him.  The polymyalgia is staying submerged.  No flares, no return.  The fractured sleep is improving.  The nose bleeds have stopped. The mood swings steadied.  The fatness is controlled.  The self-confidence has returned.   

Good.  See you again in six months.  Wiped dry, hospital record marked, nurse thanked.   I’m sent back to the recovery room.  Sat in a chair, there’s a love, given sweet tea, how many sugars?  Shake my head still get two.  You drink that then try to pass water.  Might hurt a bit, it’ll sting,  don’t worry,   you’ll be alright.  You can get changed then, if all’s okay.  Pants and gown in the bin by the door.   

I manage it, it’s easy.  I’ve done this dozens of times.  But the whole process still takes all your energy from you.   Always does.

Here’s your discharge leaflet and your tablets.  Drink loads of water now and take it easy.   The ward nurse hands me a letter to pass on to the GP.  This explains that Finch has been in and had his flexible cystoscopy at UHW and nothing was found this time.  He’s now not exactly full of beans but relieved.  He’s been given his discharge leaflet and is now heading down the corridor at a slow pace bound for the concourse where he’ll buy the latest issue of Record Collector and a Belgian Bun both of which he’ll leave in the taxi he takes to get him home. 

The letter is my passport to the future.  Nothing further to be done this time.  That is what it says.  It’s in my inside pocket where it glows slightly, nestling, making me warm.

The Return of the Urologists

Periods of public holiday and the NHS’s Accident and Emergency Departments have a fatal attraction for each other. If things are to go wrong then they will do so just as the clock moves the wrong side of five on a Friday, the moment the GP’s surgery closes and the harassed receptionists make a break for home. Down the years I have observed this medical Heisenberg principle many times. It sends hordes of worried citizens through the tobacco-smoke stained doors of UHW’s A&E at the stroke of 6.00 pm, Friday, hauling themselves into line in front of the glassed protected check-in counter, holding their bust arms, their distended stomachs, their aching heads, all waiting to be seen, hoping against hope that the rumours are not true and that somehow today by a fluke, by design, by divine intervention it’ll be quick, or even reasonably so, but it never is.

You hand in your name, tell them the problem, and then you sit. Around you paint dries. The Coke machines are empty. Former Health Minister, Edwina Hart’s healthy option chocolate machines dispense only seeds and nuts. There are no newspapers. And thank the lord there is also no TV.

I thought I was doing well. The prednisolone was working, so it seemed. The Polymyalgia (PMR) was getting squashed. The recent bladder infection was under control, sort of. I’d joined David Lloyd in an effort to get fit.

But then came Easter weekend and the glories of a family Saturday, chocolate eggs down the front of everyone’s shirt and that feeling of being replete you get from pub lunches and hours of conversation about motor racing, gardens, curtains, wardrobes, motorway routes and nice places to stay in Wales. I got home to find my temperature rising and then, in a matter of minutes, falling right back. I began to shiver and couldn’t stop. Middle of the night I was bathed in sweat. 34 degrees then 39 then 34 again. I felt awful. Hangover, flu, migraine and the need to stay sitting down. There’s a twenty pound note at the foot of the bed, said Sue. You have it, I replied. That’s the test apparently. We got in the car and drove for the Heath.

You look terrible, said the triage nurse when I eventually got to see her at Easter Sunday morning’s A&E. Lie down here. It was a hospital trolley. My home from home for the next six hours. I was given co-codamol and entered a sort of pain-riddled doze. Around me heart monitors bleeped and buzzers sounded like this was an eighteen movement composition by Karlheinz Stockhausen. Things clanged. Things thumped. Out at the edge of consciousness I heard what I took to be a doctor’s voice say, well I’ll just check through here to see if anything interesting is going on. Down the line there was moaning. Opposite someone seemed to be giving birth although given where we were they certainly wouldn’t have been. A Rudyard Kipling or an Ifor Thomas would have a made a poem out of it. I hadn’t the strength.

Eventually a young man with a stethoscope round his neck and wearing black scrubs began asking me questions. The duty doctor. According to his badge he was called Sebastian Pompadour. He put a line into my arm and then a chubby nurse with an impenetrable accent fixed a saline drip to it. You have an infection and we need to treat it. We’ll keep you in, he cheerfully told me. I’ll just need my diagnosis confirmed, someone will be round soon. They weren’t.

After several further hours of heart monitor symphony and an increasing hubbub from the cattle yards of A&E admission out there just beyond the curtains a porter in green coveralls appeared. He stuffed my saline bag down the side of the trolley and, without a word, set off with me on it down the corridors of Beirut. The scene, that which I could glimpse as we thundered by, resembled World War One. Bodies of trolleys, people on sticks, groaning persons in heaps, the resolutely ill on drips and with bandages everywhere, people slumped in corners, people leaning against the walls, people lying on the floor. We hurtled round a corner at speed, me grasping the trolley sides and sliding around much as clothes do in an under full suitcase. Crumple, crinkle, slap, thump.

I end up in Assessment. A new, brightly lit ward full nurses and smiles and not a single heart monitor in earshot. Karl Heinz’s intermission, no doubt.

Here I get three nurse, two doctors, a whole raft of intravenous antibiotics delivered by injection and by drip, and a meal. Actually sandwiches and a yoghurt but better than nothing. Am I feeling better? No. But I do know where I’m going. Urology. An Easter admission. They’ve got urologists working, I’m told. Someone will be there this weekend. You’ll be fine.

I spend two nights here. The doctors, and I see so many of these that I lose count, are convinced that it is indeed an infection. What they don’t know is of what.

I come round from my addled doze to hear voices in animated discussion. They don’t understand the stress it brings, says one. They do not, agrees the other. Too many at once, it’s not normal, it takes it right out of you. These are patients, both connected to catheter drains following prostate ops discussing visitors. In hospital you get them. It can be like the Eisteddfod, everyone you know in the world comes by.

In the corner a prostate and pretty knackered-looking man in the seventies, connected to drips and drains without number, is surrounded by his extended family. They all wear track suits apart from the daughter who has on more make-up than they use on Strictly and is wearing tights. She uses visiting time to good effect by playing constantly with her phone. Phones, once banned as devices of the devil that would interfere immediately with hospital electronic equipment, are now welcomed. Everyone in the ward seems to be chatting on theirs, those who are conscious that is.

Even the man in the next bed, a Serbian called Velcro, although that can’t be his real name, bursts into fluent and very loud Serbo-Croatian when his goes off. A quiet man who has hardly spoken the entire time I’ve been here is now shouting into an old Nokia at the top of his voice. Dobar dan rodni vidimo se uskoro da da hopsital yes very good, he yells. On the ward amid the pings of incoming text messages, the discussions about football and the sound of visitors rifling through patient’s supplies of mints nobody takes any notice.

Eventually after a few days of treatment and the taking of endless samples they decide to let me go. I’ve made one foray down to the concourse to buy a newspaper and got lost on the way back. I’m five floors up and in some sort of alternate dimension as far as I can see. The real world and mine rarely touch. But I’m keen to get back.

They are still not sure what’s wrong but the infection’s signs are in retreat. Through the night device in the ear temperature readings followed by the taking of my blood pressure appear normal. I’m given a two week supply of yet another heavy duty antibiotic (no alcohol, take it easy, complete the course) and told that they’ll be sending for me soon to scan those parts of me they haven’t scanned already.

Things read in hospital:

Max Hastings – All Hell Let Loose, The World At War 1939-1945 in which the British come off as not really up to it, the Russians as the world’s saviours, and the French as turncoat devils.

Peter Guralnick – Feel Like Going Home, Portraits in Blues and Rock and Roll in which I discover the unexpected rivalry between Muddy Waters and Howlin Wolf and read about the part played by alcohol in almost every American musician’s career.

Four copies of the Times and one Echo.

Cardiff and the Vale NHS Trust welcome pack, stuffed top of my bed where only the most eagle-eyed will find it. We want your feedback this suggests. I’ll send the CEO a link to this blog, once it’s posted. Maybe.

At home the cat is really pleased to see me and the grass has grown six foot. Grass does this. Unless you are there every day watching it the stuff rockets. Good to be back.

Fit

Fitness is the Catch 22 of this whole Prednisolone adventure. The fit can cope with Polymyalgia (PMR) far more readily than those who are not. The unfit can’t improve their condition because of the PMR. You turn up at the gym and the weight you moved with ease six months ago now feels as if it is stuck to the floor.

I’ve got the Prednisolone dose down to 8 mgs daily. It’s been at that level for more than a week now and so far there are no signs of the muscle throb seeping back. On my favourite piece of reading matter of recent times, the Prednisolone Package Leaflet: Information For The User, there is a warning against “weakness and wasting of the upper arm and leg muscles, brittle bones, thinning or wasting of the bones, bone fractures and tendon rupture.” And as I got out of bed the other day the love of my life backed this up by saying “God, you are starting to look puny. You should do something.” But what?

Street running, which I’d almost given up since the advent of PMR, makes you lean and slim. The weights room at Llanishen Leisure Centre, the Council run operation about three miles north of here, might help. I haven’t attended since last September. The gym itself was okay but the battle to get there, the parking, the jostling entrance queues, the wet crush and screaming kids in the changing rooms, the lockers which don’t lock, the permanent all-pervading smell of the pool, the disco thud from the constantly running women’s aerobics class all mitigate against attendance. I don’t want to go.

Instead I pay some sort of small fortune and join the much nearer private club, the David Lloyd. Here everything is sweetness. The cleanest changing rooms I’ve ever seen. The largest gym. Two heated pools. A comfortable bar and restaurant. And more classes on just about any and every aspect of fitness known to humankind. They do things with weights and pads and tubes and balls and bikes and even things that make you fit by lying on the ground.

There’s a touch of Ryanair about the money regime. There's a set-up fee. Then you’ve got to pay £5 extra for a padlock in order to use the lockers. And because I’m handing over an annual sum up front and have chosen to do this on the 30^th March I get charged £3.34 extra “to cover your half day membership on the 30^th and a full day on the 31^st. All our annual fees run from 1^st April. I’m sure you’ll enjoy it here.” I’ll try my best.

Things are better in the gym. This is a huge and mostly empty place containing more fitness machines than I’ve ever seen. Lift, pull, turn, bend, flex, press. I’m on the treadmill watching the marker on the screen that represents me moving steadily forward around the track. Beyond is the pool. It’s currently full of women of a certain age doing some sort of in-water aerobic dance. There’s music but I can’t hear it. Their instructor demonstrates the moves from the pool side. In the water the fat women turn and churn.

They are game for this, certainly. Some of them have got here on sticks. One of them is wearing socks. But in their polyester one-piece bathing suits they are so big. Like women on seaside comic postcards. How do they get this size? Can’t they see the stuff arriving? But maybe it’s medical and I’m being unfair.

My first session with my puny arms and my puny legs lasts for 30 minutes. I try a few machines set at levels I would have laughed at a year ago. I do five minutes on the stepper set at level one, no resistance. It’s almost like walking downhill. For encouragement I’ve got old rock n roll playing on my iPod. Jerry Lee Lewis, Fats Domino, Charlie Feathers, Dion, Lonnie Donegan. Makes the David Lloyd jump. But not enough to sweat.

The following day I’m a bit tired but nothing much. Have I managed it? I have not. Day two reveals aches in both legs, both arms and round my neck. All of PMR’s favourites, the proximate muscles. They’ll all talking to me. You’d be better off fat and lying down they’re saying. They say it a lot.

Right now, however, two days further on, my proximate friends have shut up. Maybe there is hope out there. What does the Prednisolone Package Leaflet: Information For The User have to say on the subject? Hope. I hunt for the word. There are loads of references to side-effects, abnormalities, being unwell, worsening conditions, depression and feelings of dependency but not a thing about how the world may eventually turn and brighten if you stay the course.

Maybe it’s all an illusion. I’ve taken my daily 8 mgs and it’s back to the David Lloyd now for another go. I’ll beat this thing yet.

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.