Urology - How The Whole Thing Has Changed

Prednisolone is at last and forever in the backseat.  New joys arrive to take that wonder drug's place.

Check urologyforreal.blogspot.co.uk  to keep up

Oral Morphine

 In the big bottom drawer by my bed at home are the boxes.  These are my stacked supply of prednisolone in 5 mgs and 1 mgs tabs, dozens, enough to de-polymyalgia a whole street.  The boxes are dated and aging.  I haven’t touched them since my dose rate dropped to zero.  They are the reserve, held against the pains returning.  I should take them back to the pharmacy but they are my psychological prop. 

In the drawer by my bed where I am now there is no prednisolone.  In fact there is not even a drawer, just a mobile cabinet containing my clothes  with a box of Kimberly-Clark Professional Tissue sitting on its top.  In style these  are hygienic  regulation NHS.  In reality they are little different from the serviettes offered to me last week at Lobster & Burger in Hills Street.  No printed menu, three items only served, same price for each, all of them containing lobster. 

I’m in an otherwise empty side ward at the back of the being rebuilt Short Stay Surgical Unit.  The corridor outside is sealed with plastic sheeting  held in place with gaffer tape.  This is the University Hospital of Wales, built in 1971 and now showing signs of wear.  I’ve taken oral morphine, given to me in a self-dosing syringe.  It’s put a great bank of soft glory between me and the pain.  The catheter with its bloody bag recedes into the clouds.  The ceiling glows.

I’ve been under having samples taken from inside my bladder and several tumours  removed.  I’ve no idea how long I was in there.  One minute I’m talking to the anaesthetist who is administering dope into the cannula inserted in my wrist  and next I’m seeing two versions of everything in post op.   Now I’m languishing in that half world between crisp reality and the safe haven of fog. 

The night rolls.  I drift  through it.  At 3.00 am in the near distance an alarm sounds and the winking equipment around me flickers off before coming back on.  Fire alarm.   I realise in the total dark that there’s not much I can do about this, secured as I am to the bed by tubes and drips and full  with somnambulant drugs.  I call but no one hears.  I reach for my phone and try to check current UHW status on the UHW web site.  Nothing.  There’s an emergency phone number.  I ring that, at least I think I do.  No one answers.  I search for things like “what to do in hospital when there’s a fire” and “large building evacuation procedures” and finally “how to get down a corridor with a catheter inserted into your old man”.  The results I pull up all suggest that help will come.  It doesn’t.

I’m worried, I suppose I am but the dope takes off the edge.  The alarm which has rung for at least half an hour suddenly  silences.  They’ve put the fire out.  The alarm system itself has been consumed in a conflagration.  I’m in heaven on the other side.  One of those.  Eventually a nurse carrying a torch turns up to check on me.  “You alright love? ”  I nod.

The following day, which is not long in arriving, the staff nurse reviews my case.  The catheter is removed.  “There’ll be a bit of sensation as this comes out.” Jeez and a half.  The deal is that so long as there is someone with me and so long as I can lie down and be looked after for a few days I can go.  That and the fact that I am able to pee again.  Sounds so easy doesn’t it? 

Down at the SSSU latrines, one working, two out of commission, one with a sign up showing that it is currently being cleaned, I get into the queue.  There are two blokes in front of me both aged beyond, using the walls for support and generally looking terrible.  Once it’s my turn I stare at myself in the mirror.  I look pretty much the same.

Pee is beyond me.  I return to my bed dispirited and depressed.  The nurse advises drinking more.   “That’s the answer.” I’ve already done two jugs of water and four polystyrene cups of  hospital tea.  “Why don’t you go down to the concourse and have one of their giant coffees?  The walk will help.”

In the real world of the concourse, such as it is, everyone seems so business-like and aware.  I’m still full of fog.  I do a Grande something, hot brown liquid sold for an exorbitant price and then walk myself slowly back to the ward.  I join the latrine queue and manage a miserable eighth of a cup.  Nurse says no.  Not enough.  Drink more.  Keep trying.  She hands me another tea.  I can feel it, this flood of liquid, swilling around inside me.  I’m filling up like a tanker.

Eventually  after a few more failures there’s relief, of sorts, a trickle that the medical staff declare to be just about sufficient.   They need the bed, after all.  I’m clogging the system slowing   the flow of patients.  So long as I can just about cope I should go.

It takes a good two days before proper flow returns and a whole two weeks before the pain subsides.   It’ll happen again, I’m told.  These things, benign mostly, have an 80% likelihood of regrowth.  What causes them?  Exposure to certain chemicals, being Caucasian, getting older.  Two out three then.  Rock on.

SSSU: Short Stay Surgical Unit

Cardiff and the Vale Health Care as an Episode of Jules Holland’s Hootenanny

Down at the practice the usual hootenanny is in progress.  The waiting room is full.  There are queues from those nationalities who do queuing and great seething  mauls among those who don’t.  It’s hard to tell if this is an international airport waiting lounge or a doctor’s surgery.  Only the lack of plush carpeting and stores selling luxury goods gives it away.  There are people here who are not registered, don’t know how to get registered or who do not understand the concept of registration and imagine swaying about in front of the reception counter will suffice.  Many have language issues and get by with hand signals.  Some shout.  Others have brought along younger family members better at english than they are to try to help.

In a line in front of the glass window are three aged, baggily oversized pensioners, huddled in coats and scarves and wanting urgently to get in there to present their back pains, swollen feet and chest aches.   The receptionist points to a flat TV screen on a side wall and yells something along the lines of “it’s over there, say you are here on the screen” to which she gets the uniform response of “doan work”  and the shaking of pensioner heads.    I check it out.  Press.  Enter your date of birth.  As if by magic the system knows who you are.  “Welcome Peter Finch.  Your appointment is with Dr Williams at 10.45,  You will be seen at 10.46.”  It’s 10.40, 6 mins to wait.  I go stand at the far side among a gaggle of screaming children and mothers who are bent on covering the entire floor surface with toys, prams, wet wipes, blankets and other child clinic attending paraphernalia.  I am seen at 11.22.

But I am seen.

Inside it’s slick.  There are machines that measure my pulse, and blood pressure.  Screens that show my entire medical history including MRI scans, X Rays and attendances at hospital clinics.  The room is bright lit. Diagnosis is swift and thorough.  Smoking is forbidden.  A sign tells me this.  It is forbidden outside in the waiting area too.  Cardiff and the Vale Health have a policy against.  They train staff on how to use appropriate body language when approaching recalcitrant smokers.  They don’t actually impose fines or take the lit fags off you.  Instead they offer you give it up leaflets and tell you where you can attend the nearest quit smoking clinic.    

At UHW Heath Hospital right next to the large sign which announces that this is a smoke free zone, just where the smokers in bathrobes and angel gowns usually cluster, they have now positioned a tabard-wearing smoking warden.  The one I saw last week was reading a newspaper.  Just round the corner from him was an old woman in a wheel chair going full at it with a king size Lambert and Butler

When I was young and the family doctor held his surgery in a cramped room half way along Albany Road next to where the Fish Bar currently stands everyone smoked.  In winter you’d enter the icy room heated with a single bar electric fire and lit with a 60 watt bulb to find lines of the aged huddled in their greatcoats all smoking furiously.  There’d be copies of the Daily Sketch and last week’s Sunday Pictorial lying about among the fag butts.  The air would be dense enough to hold in your gloved hands.

When you got there, facing the actual doctor, smoking was not allowed.  Drinking, however, appeared to be.  The doctor kept a bottle on his bookshelf badly hidden behind and edition of Grey’s Anatomy.  My mother said she was disgusted.  He always smells of drink, she’d complain.  But still we kept going.  The cure for whatever was wrong with me at the time was always the same.  Either a tonic, a large NHS bottle of fishy-tasting cure all, one large spoonful to be taken daily, or an ear syringing.  This was carried out with warm(ish) water and a steel bowl held near the bottom of your ear.  You went back out in the winter cold for 30 seconds a new person  after which the side of your face froze.

More effective, it turned out, than today’s cures.  Today I get words of concern and antibiotics.  Out in the street the rain is coming down like burst water tanks.  Passing cars are like speedboats.  I sail home.  Despite the privations, lack of computer records and the tobacco I’m sure the past was easier.  But then people of my age always say that.

The Darkness Returns

In the emergency dental clinic the air con is on sub-arctic high.  Patients clutch coats to their throats.  Those with phones, which is almost everyone, sit bent into their tiny screens.   The bloke next to me is in deep conversation with his solicitor.  “Tell her no, I’m not paying anything extra”. The wall-mounted patient’s television set to channels the staff prefer shows a programme about house buying in Andalusia.  A blonde couple are rejecting the polished marble floor of a magnificent and sun-filled villa as being not what they were expecting.  “If I were here I’d have pale wood and scattered rugs,” says the blonde woman through red lips half obscured by cascading blonde hair.  Her blue-eyed vacant looking blonde husband nods his blonde head.

My name is called, pretty quickly I thought,  and I’m ushered into a side clinic.  Here I am introduced to the three students on call today.   They spend half an hour taking my medical history during which I list prednisolone as something I once took but now, facing a wonderful side-effectless future, don’t.   The chair is reclined and they commence the examination.  Somehow the lamp won’t turn on and then no one can find any dental instruments.  The student dental nurse watches with interest.  She can’t find any instruments either.  The eventual diagnosis is that my heavily crowned upper teeth have worn the enamel from their lower brothers.  The underlying dentine has become revealed and is allowing access to the nerve-filled pulp below.  Pain when I eat.  Pain when I breathe.  The easy fix is a layer of laminate.  Won’t take long.  But they can’t find the mixture.  Then can’t find any instruments with which to apply it.  Drawers are opened.  And closed.  One of the group is sent off to consult with their qualified supervisor.  There is a discussion, door opening, cupboard hunting and finally the sound of a packet being opened and something being mixed.

I slumber, drop within myself, stretched out as I am in the sort of position I imagine astronauts would use when setting off for Mars.  Deep in my lower back, down where the synovial cyst slumbers I sense something shift.  A vague glimmer of pain.  A portent.  I ignore.  I shouldn’t.

The following day the whole raft of symptoms I’d forgotten through these many PMR-free months return.  Proximate muscles are stiff.  There are aches in my hips, my thighs.  It’s hard, almost impossible, to bend down.  And if I do get down then it’s equally as impossible to get back up.  This is a polymyalgia relapse.  A spike.  A regression.  A return. 

After a few days of failing to recognise what is actually happening I eventually hunt out my supply of unused prednisolone.  This is stored in a shoe box,  unused packets unreturned to the pharmacy and thank god for that.  I take 5 mg and then several hours later try another  5.  Before bed I swallow another.  Or do I?  I’m suddenly not sure how many I have taken.  Fear of polymyalgia fog.  I call the rheumatology help-line where a recorded voice tells me that they’ll return my call between 1.00 and 5.00 pm.  Today.  They do.

In discussion with the nurse who certainly puts the time in talking to me we eliminate the cyst acting up and settle for PMR as the lightly cause.  Relapse is common.  I take 15 mg pred in one swallow.  I’ll be called in for a consultation.  Don’t worry.  Try not to.  Ah prednisolone, the wonder drug, would I be worried about you?  My faithful, mind churning, twisted friend. 

In front of me stretch months of pharmacy calls, pill swallowing, tests, waiting rooms, consultations, discussions, hunting of the internet for answers, fumbling with the Heath hospital car park pay machines, careful record keeping, nose bleeds, wretchedness, infections, weight gain,   weirdness and worry studded sleep. 

In the lounge  stretch out on the sofa and stare a bit at the wall.  Then I turn on the TV.  On the screen they are describing a Spanish villa’s open-plan living area.  The polished marble is a strong selling point.  Apparently.  I change channels and get a day-time rerun of some DIY programme where builders rush to fix a disadvantaged person’s accommodation in time for their  birthday.  They are installing a pale wood floor.  It’ll have rugs scattered over it, the smiley-voiced presenter assures us.  The world is full of circles.

    

Eight Weeks In

It’s been that long since prednisolone crossed my lips.  In general terms nothing but for me some sort of eternity.  Would the shoulder freezes return?  Would I need to get up and shamble round the room again just to stop the leg from aching?  Could I walk into town without the requirement for stopping, leaning against walls or sitting in gutters?  Could I cope with a visit to B&Q, alone?  Make it round past the shelves of screws, racks of wood and lines of lamps, boilers and paint without feeling the irresistible pull of the car where I could sit and let the pain drain into the floor?  They wouldn’t.  I wouldn’t.  And I could.  In fact I did.  Ikea without pain.  Homebase with ease.  Here to Penarth Head and back without stopping.  All experiences for the Polymyalgic to relish.

In between times I’ve upped the writing.  Prose is so slow.  Unlike poetry which zips.  I research afternoons.  Read in the evening.  And, in this new and ideal world, write in the morning.  The secret is to get up and somehow slide to the desk without speaking to anyone about anything, not hearing any radio, or neighbourhood chatter, or happy gardeners running their power mowers in stripes.  It is vital to do all this hearing no irritating drills, builders shouty conversation, nor disc cutters from the permanently being rebuilt next door patio.  They finish it then turn round and build it again.  Permanent renovation.  So it seems.  

But, of course, the world is not ideal, nothing like,  so we have to compromise.  Mine is to rise, walk round the block (well, a few blocks) and the then, ignoring the world’s distractions as much as I can, put the right music on the player, down a hot tea,  and blow.  What music?  Scratchy bluegrass, The Bristol country sessions, Apache era Shadows, Booker T, early Dylan, Georgia Ruth, sweet soul music.   Does it work?  Mostly.

There is a post-prednisolone difficulty, however.  The eczema has returned.  There are patches on the ankles and the shins and in the lower back.  Flakes and crusts.  I’ve delved in the depth of cupboards and dug out the creams I once had prescribed.  What remains of them.  Apply liberally.  Scratch only with the soft bristles of a hairbrush.

A decade or more back UHW tested me for allergies.  I sat in the clinic while a whole grid of irritants was applied to my back and labelled in permanent marker.  The following day they called me back in to check which had reacted.  There’s only one red spot, the consultant told me.  He was a man in his early sixties wearing a baggy suit and with a spatula in his top packet.  Printers ink. 

Perfect.  For someone who’d been involved in print one way or another all his life what else could it be?  For forty years I’d been a writer, editor,  publisher, distributor, critic, bookseller and was now a sort of literary agent.  All that time touching paper with ink on it.   

The consultant prescribed a topical steroid with instructions about not applying too much for fear that I might thin my skin enough to allow the blood to leak.  These creams are sort of T-Cut, he told me.  They wear away the reacting layer revealing the pure, unsullied skin beneath.  A joy to behold.  I was also given special liquid which would desensitise my entire body.  Stop me scratching it.  You put it in the bath and lie there for a quarter of an hour.   You do this and after a while you feel like a fruit blanching.  Language is so imprecise here.  We need images.  But I don’t have them.

Did any of these procedures work?  Not really.  The only thing that ever made a difference was the prednisolone.  No sooner had I begun with my whacking 40 mg daily than the eczema vanished.  Totally.  It stayed vanished for the whole two years this condition has lasted.  And now the pred has gone the allergy is back.  But sod that.  Scratching is easy.  Getting down the road with frozen proximate extremities, rusted iron for feet and winter fogging the mind that’s what was difficult.

Zero

Zero is never nothing as any scientist will tell you.  It’s merely a point on a long and sliding scale.  The aim of anyone taking Prednisolone is:

 a) to get cured
and
 b) get off the dreadful drug

I thought I’d managed that.  My polymyalgia vanished into the sand and the steroid that fixed it tapered from 40 right down to none.  It had been a long haul.  Two years.  5 mgs a day this month, then 3 and then finally one.  I’d alternated between nothing one day and 1 mg the next.  I felt  fine.  Moving to zero was simple.  Just stop.  I had.   Perfect.  Bright skies, clean air, a sense that my head was my own again and nights were filled with unencumbered non-fat face sleep.  

Suddenly, however, there I was.  Less than zero.  Withdrawal symptoms sneaking out of the bushes.  Colds arriving and never leaving.  Small cut from my recently returned Eczema so slow to heal. Great physical exhaustions plaguing me.  Loads of sitting there staring out of the window without the energy to even check my phone for email or flick the pages of the newspaper.   

I read.  I managed that. John Williams’ Stoner.   Couldn’t put that down.  It’s about someone who allows the vicissitudes of life to dominate him and to dog him all the way from a promising lectureship as a young man to that state of never having achieved anything worth remarking about that faces so many at the times of their deaths.  Does it matter, I wondered.  Are we here to make a mark?  Do we need to leave something behind beyond a pile of old letters and a sack of worn out shoes? 

In the finality nothing matters is the standard approach.  Not mine, however. You have to grasp at life.  Put the Williams book back on the shelf.  Turn the Kindle off.  Get out there and write your own.  Don’t let life just fade to grey and then to ore grey and finally to black. 

What I’d discovered was that coming off prednisolone wasn’t really just a matter of stopping.  There are withdraw symptoms.  Withdrawal difficulties.  Things that keep you awake at nights.  Cold turkey wouldn’t hack it.  After a month of zero I returned and took a few.  Spent a week alternating iron and vit c tablets with good old white prednisolone.  Let the tiredness leave me.  Told the cat it was all alright.  Got up and turned the machine on.  Wrote a few thousand words.  Determined to write more.  Decided to take another prednisolone.  To spread the drop to zero over a slightly longer period of time.  To win ultimately but to do it slowly.  I put some bluegrass on the player and got the banjo breakdowns running.  Tea.  Another few hundred words.  Suddenly life looked better.  Love Minus Zero/No Limit  as Dylan has it.  It’s the No Limit part that’s important.  Check back, there never was a year zero.  Nothing is impossible.  It’s always something.

I’m back on no prednisolone again now.  The perpetual flu has lifted and the energy once again flows.  But I’ve those boxes of the drug out back still.  The ones I was going to send back to the pharmacy.  Maybe I’ll hang on just a while longer yet.

The Night Nurse Slumber

Deep in the NightNurse slumber the wind blows.  It’s a wind full of ghosts, fleeting memories  that skit across the mind’s surface and then fade into the borders like the wraiths they are.  When I surface, with a start, the real world appears as full of apparition as the one I’ve just left.   Motes, glimmers, rattles, thumps, distortions that shift and blur.  I tread water for a disorientating moment and then it all clears like bubbles surfacing in a glass. 

The noise outside is the men relaying the pipeline that supplies gas to the street.  I can see it, a giant yellow coil like a children’s treat being unwound into a hole right dead centre across a neighbour’s drive.  It sounds Industrial, just like Cardiff once would have.  Everyone waking to the hammer and thump of the steelworks, the rattle of the coal staithes, the trains steaming and clanging, and the ships hooting as they reached the docks. 

From up here on the hill I can see where it all would have been, the whole post-industrial landscape laid out before me, now gentrified with apartments and neat cul de sacs.  Places to house our rocketing population.  How does that figure?  When there was work aplenty Cardiff was half the size it now is.

The thing with colds is that no matter what you actually do they carry on just the same.   Their durations are fixed.  Work through them or give in and lie down.  Makes little difference. Pretty much the only thing that works that I’ve found is drugging yourself up with Lemsips and hoping for the best.  I’ve prepared a vacuum flask of these before now and carried it around with me all day.  Down the road they are advertising Hopi Indian Underwater Nipple Massage (£35 a go) as sure insurance against catching winter colds.  Good luck, I say.   

I reach for the Prednisolone, the morning routine of tablets to keep the polymyalgia pains away.  And then I remember.  I’m on zero now, been here for a few weeks.  The problem has been dealt with, diagnosed, treated, lived with at its maximum intensity and then lived with as it slowly oh ever so bloody slowly  faded down the scale for 10 to none.  Polymyalgia, the malfunctioning of the proximate muscles, common among older women, apparently,  and those who live like sloths.  A disease of the body that rattles and frightens you so much that you wonder if actually the whole thing is in the mind.  But it’s not.  It’s as real as bone snapping or bladder infection or thumps on the nose.  You take tablets to ward it off and it goes away.  If you are lucky then it does that permanently.

Am I  cured?  Could be.  In a drawer I have a large supply of the drugs.  NHS overprescription to ensure that I always had enough on hand to save me.  There is nothing wrong with the drugs in these boxes  but they won’t be recycled. They’ll be thrown away.   I’ll take them back to the pharmacist from where they’ll be sent for some sort of secure disposal.  I could try reselling them on the street, I suppose.  But then who would want a fat moon face and night fears followed by nose bleeds and an inability to go out?  I guess I’ll hang on a while, just in case the leg pains shimmer again.  Best be sure.

And this blog.  What do I do with it?  I’ve still got the spinal cyst  and my dealings with the NHS might have slowed just a bit but they’re still there.  Maybe I’ll change the name and carry on.  I’ll let you know.  Watch this space.

Prednisolone and Ajax - Conquering the World

I’ve taken just one tablet today.  A single white milligram pill of prednisolone, swallowed for old time’s sake, to keep the eczema off my skin or as a bulwark against pain.  I don’t know.  I used to take forty of these things daily.  It’s gone on for so long.

I’m heading for UHW (University Hospital Wales) for what is euphemistically called a procedure.  This one is to insert a small camera on the end of long flexible rod and look inside my bladder.  Guess where they insert it.  I’ve had it done  before but the anticipation remains icy and deadening.    The joy of cystoscopy.  Someone should write the book.

Ambulatory Care, which is what it was when I began attending a decade ago, is now known as The Short Stay Surgical Unit.  This, presumably, because attendees had no idea what the word ambulatory meant.   At reception a woman asks me which of the two addresses shown on the admission form is correct.  I tell her the latter and she looks at me blankly.  The second one, I explain, pointing.  Another word lost to English forever.

Reception was new at the start of the nineties.  Back then hospital management were really keen on making  clinical areas look homely and welcoming.  The place was done out with wallpaper, carpet, ashtrays, wooden-armed armchairs and a forest of potted plants.  Filing cabinets were hidden .  You were supposed to feel comfortable here much in the way you were in rooms where funerals were arranged or rapes reported.  But twenty years on things have changed.

To start with there are the notices which ban things: food and drink, smoking, verbal abuse.   There’s also a new one that also bans electronic cigarettes.  This was rushed into place to forestall arguments at the desk made by those who insist this sort of smoking to be totally different from the other sort and therefore okay.  The notice they had showing a drawing of a phone with a line through it, however, has disappeared.  Around me the elderly (almost everyone here is over sixty) fumble with their mobiles.  They carry them, they imagine, to fend off emergencies.    Today they are  explaining to relatives, friends, and mis-sold financial product compensation fixers that yes, it is a nice day but no, not now, they’re in hospital. 

The framed art works have also been added to.  Ambulatory Care always went for prints of flowers which are still largely in place.  Giant reproductions of ivy and maple leaves, huge red poppies in two varieties.  To them have been added Christmas decorations, strings of tinsel stuck in place with cellotape, plus an artificial tree.  The sound system which in the past has always played stuff by Manfred Mann and Gerry & The Pacemakers is loudly knocking out Christmas songs from Bing Crosby.  Deck the Halls, Jingle Bells, Let it Snow, Let It Snow and the inevitable White Christmas which as far as I’m concerned he can dream about for as much as he likes, I’m not joining him.  The music has a nineteen-fifties austerity  saccharine slush to it that gets inside your ears and won’t leave.  I’d put my iPod on but then I wouldn’t be able to hear my name being called.  

I’m there for 40 minutes.  The tape rounds on itself and begins to repeat.  The receptionists all hum along as they shift files from one stack to another and then forget where they’ve put their pens.  Eventually I get inside.  This is after two further sessions of sitting in line in different rooms, a blood pressure measure, an arm labelling, a questionnaire completed, an authority to proceed signed, clothes into a plastic bag and special pants put on. 

They find something.  There’s a dull sinking in my stomach.  With my agreement they then decide to remove it there and then.  I’m strapped up and the growth is sliced and cauterised, both sides.  It takes around five minutes although this feels like fifty.  It's not without discomfort.  By way of diversion the Muslim nurse tells me she’s finished her Christmas shopping which is reassuring to hear.  I haven’t even started mine.   I then get my glasses returned to me and I’m helped back to the post-op area.  Seats, trolleys, dumper bins.  I get handed a cup of tea. “You can go home once you’ve passed water”,  the receptionist tells me.  “Have a biscuit, they usually make you feel better”.  It's hard to resist but I manage it.

At the desk a cluster of  ancillary staff and nurses are discussing household cleaners and how you can’t get Ajax anymore.  This is true.   Ajax, the wonder product, used to be able to see off just about anything.  If you had a tin at home you were ready for the world.  Just like prednisolone.

I’m allowed to leave.  Taxi home, handful of discharge leaflets, anti-biotics and a letter for the GP in my hand.    Back again in the spring by which time Bing Crosby will have been boxed and we’ll be back to The Searchers and The Fourmost.  Clean and clear.    Something to look forward to.

Approaching Zero

The dark wonder drug lies in the drawer.  In there, behind the socks, are the massed heaps of green and white boxes containing my collection of as yet untaken prednisolone.  Open the drawer a crack and they sort of shimmer.  5mg tabs.   Full of fatness, sleeplessness, reflux and fear.  Taking these back at the beginning  the world was a desperately dark place. 

Up at the clinic, once the diagnosis had been confirmed, and the pain had magically lifted, they told me I might be on these things for a time.  There’ll be side effects, some worse than others.  You might get a moon face, a fat neck and a humped back.  Weight could hang onto you like sliding lard.  I looked up photographs of sufferers and saw them.  There was something defective and old about the way they represented themselves.  They didn’t want themselves photographed.  They smiled painfully from somewhere deep in their disability.  They were how the world was back in the 1950s only this was now.

I gave up eating, almost, and went to the gym as often as I could.  This weight won’t get me I told myself  and neither did it, miraculously.  Instead I was overtaken by a sort of paranoia, a fear of company, a dislike for being anywhere crowds were.  Didn’t do readings, didn’t go out much,  I stayed at home.

Tapering was the buzz word.  The dose would slide down the scale in a sloping line.  I began on 40 mg daily with a whole armful of additional drugs to counteract the side effects of the first.  Stuff to fix the calcium drain from my  bones, to stop the stomach acids roaring up my throat, to fix my blood.  Might take 18 months, advised the GP, to get down to zero.  In the background was the vague suggestions that for some people zero never actually came.  I read about it.  Patients who’d become sufferers in middle age and were still full of prednisolone fear when they were 80. 

But as the taper sloped, ever so gradually, the fear began to dissipate.  The nose bleeds stopped.  The sleepless nights slowed down.  The pain which had taken over all my major muscles never returned.   I got down to 10 and then 5 and then 1.  I stopped carrying boxes of the drug around with me as a bulwark against missing a dose.   Now I’m in new territory, facing days where prednisolone does not feature.  I’m through the sound barrier in a place where anything can happen.   Yesterday I took nothing.  Today a single tablet.  Tomorrow I’ll take nothing again.

Out there are prednisolone free skies.  Ones where there is no polymyalgia and no paranoia.  It’s taken three years.  What will I write about now?  How shall I continue to observe medical practise and report on the NHS?  But, given my age, I’m sure something will shortly be along.

Sit For Relief

In the surgery I’m on the long seat that’s never quite wide enough.  There are notices everywhere around me warning against noise:  coughing? (join our cancer survey), flu (vaccinate now if you are over 60) and Bin It (if you have a cold).  No one I can hear is making a sound.  That’s not quite true.  There’s a mumble in Polish going on between mother and child in the distant corner.  You can hear the phone ringing in a back office.  But apart from that the whole place is spookily quiet.

The over-weight guy with hair greased upright on his head like this was still the 80s has been told to go outside to smoke.  I can see him sitting on a low surgery wall.  He’s encased in a great green parka with an RAF roundel  on the back lettered up with the logo of The Who.  He’s come back in once waving something that looks  like a hookah and asked if it was okay to smoke electronically and has been told no.  When they call his name he won’t hear.  He stares into the distance, watching the traffic, enjoying the NHS air.

Why am I here, again, god the third time in two weeks?  Because the cyst has again been doing its stuff and making walking more or less untenable.  Although I did manage it round at least a dozen studios and open houses yesterday as part of the Made In Roath art extravaganza.  I say managed it.  Mostly what I did was sit on people’s stairs, sofas, chairs and garden walls.  Recover, up, on to the next venue, sit for relief, try to imagine it wasn’t happening.  Sort of worked.

At the festival’s highlight, The Actual Museum of Roath (a shed in a garden on Werfa Street), Sir Alfred Street and Dr Glen Roy explained to us all the true history of the district.  To think that I’d been deluded by library fact for so long.  That cave painting they discovered in the caverns under Roath Park Lake was, of course, the outline of a prehistoric Clarks.  For years I’d thought it was of a rusty bike.  And the economic wars with Splott over Roath’s access to the sea via Clifton Street I’d put down as internecine fighting between mods and rockers.  Chairman Moy’s long march to the Wild Park on the edges of Llanishen I’d managed to miss completely.  As I had the discovery of the great Mappa Maindee with Roath shown there as twice the size of India.  Which it is, of course.

In the film, Sir Donald Street (who looked a little like Sir Alfred but with a beard) showed off a collection of Roath artefacts of wondrous variety:  The Elm Street Marbles, bronze age cooking pans, slippers from the age of the Vikings, Ifor Novello’s once syphoned petrol in a bottle.  I left truly chastened by the extent of my misunderstanding of the past.

Round in Arran Street where Luke Rice was displaying his new take on Broadway (the American version totally shadowed by our own native working-class bohemia) I met Wing Tang.  Wing’s trick was  to do two minute instant portraits, drink a beer, and then do the same portrait again.  In pencil.  Succeeding versions became increasingly shaky with the faces more real but the hair increasingly fuzzy.  For a pound he agreed to do me.  No beer, he’d run out.  The result was a reasonable likeness, if stern.  Finch unsmilingly facing what's next.

There must have been something in the air.  I managed the walk from there to a viewing of Betina Skovbro’s Facing The Park photos with only one stop (Sandringham Road).  Betina has gone along the run of terraced houses that face the Mill Park’s Waterloo Hill end and photographed the inhabitants – adults, children, pets – and then had them blown up larger than life size and affixed to the insides of their windows.  The super-sized residents stared out at the park, smiling.  Almost everyone had taken part.  The warmth was palpable.
  

I get given stronger painkillers.  New stuff with a higher opiate content.  Do not operate machinery, it says on the label.  If you are on ladders, do not work without a firm hold, warns the Information for the User leaflet.  Alcohol will increase the effect significantly.    That’s it then.  No more whiskey-fuelled wallpaper hanging for me.  TV and Viking slippers instead.

Along Newport Road on the way back to the car I pass house gardens in which inhabitants have dumped the past’s detritus.  White goods with their doors hanging off, bed frames, sodden mattresses, mounds of brick, stone and fractured mortar.  Roath’s past given up on waiting for the future.   Unless Sir Alfred and Dr Glen would like it, of course.

[in the photo - The Museum academics - TRE Harris, Dr Glen Roy and Sir Alfred Street]

Waiting

The rules have changed.  Well not the rules exactly but the conventions.  It used to be that waiting was done in the nearest thing to silence possible.   It would be carried out in richly cold, ill-lit rooms across the land, stuffed solid with men in ancient overcoats, women in hand-knitted sweaters, and children befuddled with straggly scarfs.  Queuing in quietude, the odd person reading the Daily Mirror but the rest staring somnambulantly  into space. 

Our local doctor’s surgery was exactly like this.   He drank, my mother told me.  He would tank up as protection against the morning rush of gout and gangrene and diphtheria.  His hands were cold.  His bag would be open, the appurtenances of his doctor’s trade disgorging onto his leather-edged blotter, his calendar, and the rest of the pill-boxed clutter on his mahogany  desk.  He always smelled of gin.

But outside was order.  Nurse Ratchet, our local Cardiff equivalent, maintained iron control.  You were seen in the sequence in which you arrived.  No exceptions.  You sat in ice silence.  You listened keenly for the mumble of your name.  When it came you got up and walked into the consulting room, knocking just before you went on in.

But it’s different today.

I’m in the early evening emergency clinic at the local GPs.  For emergency read this is the only way to get an appointment with  anyone before you die.  I’d like to see a doctor.  I’ve got a date available end of next month, any good?  Not really, I’m in a lot of discomfort.   Is it an emergency, love?  Yes.  Right.  5.45 this evening.  But expect the surgery to be full.  So you arrive and you wait.   Time passes slowly, here in the mountains.  The fish move round in their tank.

Once was you could get several chapters under your belt during this forced interregnum.  Not anymore.  The United Nations have taken up residence in the carpeted waiting room.  On my bench are an extended family from Eastern Europe.  Mother, two pushchairs, five children of various ages, the teenager on her mobile, the younger ones playing chase the monster and jump up and down on him, shrieking at full volume,  until he’s flat across the floor. 

In the far corner a couple from the sub-continent  sit in fat, animated discussion.  She has her head covered.  He reads to her from a paper he flutters in the vapid air.  She waves her arms.  They could be discussing the price of wheat, the Council’s new wheelie bin proposals or news from relatives back home.  Whatever it is they are not cowed into tranquillity by the fact that there are others in the room. 

Two white girls in hoop earrings and trainers tap their feet to the sounds coming from their headphones.  There’s leakage,  a bit like a Brillo pad being rhythmically bounced off a metal tray, but by now in the rolling by years I’ve got used to that.  It’s a background I can filter out. 

The black Africans are something else.  Joyous, alive and with personalities that reach out to fill the room.  Already the tall one, the first to arrive, has engaged the receptionist in loud, joking banter.  He is followed into the room by a friend wearing an oversize t who places a small beat box on the floor.  Out of it come the amplified rhythms of juju hip hop.  There is finger snapping, much smiling and a load of body swaying which Victor Sylvester would have described as dancing but here is simply a way of getting through the day.  The two are joined by three others who enthusiastically bop around their corner of the waiting room as if this were a Saturday night at the bottle shop.

The receptionist ignores the intrusion.  Arriving patients smile and sway in sympathy.  The NHS should provide this everywhere.

Later, at the pharmacy over the road, where the waiting area is almost a completer replica of the doctor’s – same patients, same seats, same NHS information notices, but no fish  - the extended Eastern European family cluster the desk.  Bar a girl of around eleven no one speaks English.  The pharmacist is asking important questions.  Is she on any other medication?  Where is the pain?  Is it jabbing or is it there all the time?  The daughter does her best, the mother points to her mouth, her throat and then her stomach.  Yes, says the girl.  Which one, asks the pharmacist?  The mother smiles and nods her head.   She is given a bottle of Gaviscon and a box of tissues and the suggestion that she go back to the GP if she needs any more help. 

I get my usual armful of prednisolone plus various other medications to help counteract the steroid’s more evil ways.   How do you cope, I ask? We do, is the reply. Behind me the Black Africans have all arrived.  They haven’t got the beat box out yet but I’m sure they will.

Nye Bevan Started This

I’m so used to travelling to the hospital by now that the car drives there itself.  Two roundabouts, four sets of lights, swerves, chicanes, zebras, staff arriving on shift in a steady stream, patients drifting the roadway like clouds;  a world of purpose melding with a world of the lost.  In the strong early sun the features that endear this outpost of the NHS to me  are all still present.  Gangs  of smokers, babes in arms, dressing gowns flapping cluster the entrances.  Consultants in suits rattle into their mobiles as they stride the stairs.  Ancillary staff, mouths full of crisps and coffee, dot the summer grass. 

Along the corridors which run back from that entrance-framing and slightly frightening full-length portrait of Nye Bevan, founder of health free at the point of need, the crowds surge.  There is purpose here. Overweight administrators roll Tesco trolleys of paper files, patients are on sticks, the   tattooed limp, there are  mad bastards in gaping gowns.  Heading for the clinics are the aged in catalogue shoes,  the young on their career paths to glory,  well-meaning volunteers, new patients, returning visitors, the don’t know what work is, the can’t be bothered. 

I’m in the hands of physiotherapy, the latest referral  in the Service’s attempts to still my synovial cyst.    I’m signed on for a series of sessions in the gym.  It’s called back2basics or something equally uninspiring.  I ask at reception and the woman there isn’t sure what it’s actually called either.  You wait here, love, they’ll call you when they’re ready.    

Stoically  I sit myself among the limping and the lame, the wheelchair bound, the stick bearers, the becrutched;  those carried here, and those who stumbled in on their own.  Are these to be my fellow gym mates?  Nope.  They’re real patients around whom hope drains away like sand.  On the wall are adverts  for support equipment including an ergonomic aluminium exoskeleton that could have been designed for Rocket Man.     

With my pain in retreat I feel I should be at the David Lloyd not here.  Inside it’s like being back in school.  A 50s set-up of varnished wooden wall bars, beams, ropes hanging from a high light-filled ceiling.  All that’s missing is a vaulting horse.  In its stead stands a fan and next to it a water-cooler.  Be sure to drink from here often, instructs the instructor, ice-cold mouthfuls in cardboard cones.

There are nine of us with everyone on the surface looking fit enough to run for charity.  In a side room there’s a mad bugger wearing camouflage shorts and covered with tattoos at a density thicker than burning tyres.  He has slash scars across the side of his head and a face that would frighten ships.  Staff are measuring the strength of his grip.  He once, I imagine, could crush scaffold poles and punch holes in reinforced doors.  Is he with us?  No, thank god, he’s not.

We are each given a set of forms to complete which, in addition to the usual identity questions, ask us how we feel about the lives we live.  Write down an activity you find hard to do and measure how much pain is involved on a scale of 1 to 10.  The guy next to me, who looks like Nick Hewer from The Apprentice, has written Harry Belafonte down as his name.  I’m sure this can’t be right but I let it pass.  His hard to do activity is picking up pieces of toast from the floor.  I think for a bit then put down shopping at Homebase as mine.  

We set to.  There’s stretching, floor mat work reminiscent of Pilates, circuits, sessions on a treadmill, stepping on and off a bench while holding a fairly heavy medicine ball.  Do this in your own time and at your own level, yells the instructor.  A guy in a Superman t-shirt is running at sprint pace on the machine while a woman in a loose-fitting ensemble sourced from Laura Ashley has given up and is collapsed at the side waiting for world to slow down.

I crack on, sweat coming out of me like rain.  It’s the old days back.  Step up, breathe, step back.  Chuck the ball at the wall.  Catch it.  Squat, stand, leap in the air.  That’s it, shouts the instructor, go for it.   I do.   

After twenty minutes or so we are told to stop.  We cluster in a heat-ridden clump around the gym’s single fan.  That’s given you all an idea of what we’ll be doing over the next five weeks, Norman tells us.  I think that’s his name.   No mention of backs.  Amazingly mine still feels fine. 

Out at the lockers a guy who reminds me of Tony from the Sopranos tells me he’d normally run a mile rather than exercise.  But running a mile is exercise, I reply.  Guess it is, he says, unfolding a crushed jacket from his brand-new red Cardiff City rucksack.  But I did enjoy it all.  Sweat drips off my nose and fans out like Australia across my back.  Me too. 

     

The Psychic Centre

The way to overcome the synovial cyst pressing the spinal nerve is to hang the leg down below the peddle.  It’s a cycling technique I’m proud of, makes you look like a boy racer ready to round a corner at speed.  Although doing this on my folding Bromfield - small wheels, no crossbar, handlebars like a giant bottle opener - can look somewhat surreal.

There’s something about these bikes that makes teenagers shriek.  It happens again today.  As we roll up through the crowds along Churchill Way, the feeder hidden deep beneath us, a gang of bright sparks at a bus stop start the cat calls.  ‘Come on boy, get your feet turning, push those peddles.’  Why? Better than chants of  **&!!!***   I guess.

Bikes are certainly the best mode of transport for post-Polymyalgic, lower-spine synovial cyst sufferers.  There can’t be that many of us out there.  I'm down to 2 mg daily of the wonder drug and the cyst is falling in and out of focus like pulsar.  Sitting is about the only sure relief I know: the spine opens and the the pressure on the cyst reduces.  Doing this on two wheels lets you move about as well which makes it just about perfect.

I’m leading a psychogeographical tour of Cardiff, and doing it by bike.  There are twenty of us, all winding our way through the city centre.  It’s Saturday afternoon and the sun is uncharacteristically blazing.  The streets are dry and full of the joyful.  The pubs and bars have spilled out way beyond the confines of their smokers-only enclosures.    Shoppers in t-shirts have their arms full of brand new purchases.  You would not know there was a recession.

We’re heading up to the place in Park Lane where Bute’s Dock feeder, a sort of canal without boats built to fill his first West Dock with water, emerges briefly.  It’s there, stuffed into a two foot gap, fifteen feet below us, darkly surging.  Everyone is terribly impressed.

After this it’s the Glamorgan Canal underpass at Kingsway and then the psychic entre of Cardiff.  Everyone wants to reach this spot.  The psychic centre – a place of power and mystery.  I’ve told them all that this is what it is anyway.

We get there through the surging crowds leaving Bute Park, decked in Help For Heroes t-shirts and Battle of Waterloo military hats made from cardboard.  It’s Armed Forces Day.  I’d forgotten.  The tattoos and the beer swill down the pathways.  “This is Cardiff’s psychic centre,” I announce just as the refuse collection service arrives to empty the bin next to which I am standing.  I plough on regardless. 

“Here,” I tell them and the massed bus queues and straggling car parkers who have all moved I  towards me to hear what’s happening. “Here is where the power lines cross.  The Roman roads north and east and west,  the canal with its iron and coal, the ley lines running down from the Beacon’s standing stones, the secret tunnels that access the castle, the roadways into and out of the capital.  They all meet here.  This is a vast nexus of subliminal power, ancient and modern, lay and spiritual, real and imaginary.  Can you feel it?”  The entranced crowd nod. They can.  It’s here, the vibrancy, the energy.  If we pulse it up into our bodies I’m sure we can all fly. 

I tell them the story about how the late blind bass player and poet Dave Reid would be out on the town drinking and when  he’d had enough would find his way up here simply by sensing the ley lines.  He’d sprawl on the floor and thrash his white stick about until the police arrived.  What could they do with a drunk blind man?  They’d take him home.  Reid’s personal and free taxi service.  He pulled this trick many times although once, after the cops had unloaded him into his Cathedral Road bedsit, he chose to re-emerge and started flailing about again in the road there.  This time the police were not so obliging.  They took him back, all the way to the psychic centre, and then into police HQ nearby where they locked the drunken blind man in the cells.  £25 fine and bound over.   That’s what psychic power can do.

The crowd laugh, in sympathy perhaps.  I’m doing well.  The cyst is in retreat.  Cardiff around me is real. The past merges with the present.

The tour finishes at the new library.  We’ve gone around the back of Wetherspoon’s Prince of Wales where the fake outline of St Mary’s Church hangs high in the air.  So much of the city is fake.  The West Gate, attached to the Castle wall, is a Burges recreation.  The stone circle in Bute Park is artificial, put there by the Gorsedd of the Bards when the Eisteddfod visited.  The Gorsedd itself a fake, imagined by antiquarian and all-round literary man Iolo Morganwg two hundred years ago and now a fabrication so long that it has become venerated.

At the Library, wedged in between the drinkers and the Wagamama diners, I perform the poem of mine which has been engraved onto the Library’s front glass.  It’s a list, as many of my works are.  This one rolls the characters – street and otherwise – who have made Cardiff into a reverberating chant.  Here, I tell them, the past really does become the present. 

Near this spot you could once

cross a Cardiff bridge

before that a Norman ditch

before that Welsh water

before that Roman mud

Was there much here

found in the clay?

socketed axe head

with converging ribs

bone fragment pot

a few microliths

Now all lost

What we’ve got instead is the vibrant future. Leg down, one peddle cycling, I head off.  Synovial bugger, you haven’t got me, not yet.

**

Prednisolone update:  dose reduced to 1 mg / 2 mg on alternate days.  Ghosts of unsettled sleep and fear of crowds finally put to rest.  Does the wonder drug ease pains from the cyst?  Jury hasn't told me yet.

Creative Update: since March 2012 the house hunting, house purchase, property development, battles with planning and with Welsh Water, management of project, finding the money, selection of builder and then actual building with its noise, disruption, neighbourhood agony,  super stress, dust and constant timetable readjustment “they’ll put the flue liner in tomorrow”, they don’t, you ring up to complain, they don’t get back, all this has taken its toll.  Writing has reduced to a trickle.  Blog meander.  A few e-mails. No poems.  Not a new piece of verse in almost 9 months excepting the RS celebratory ode as a new commission, proving, I guess, that it can still be done. 

Creative Future: kick start, soon.

House Update: have moved, Southminster a dead duck.  Bronwydd glory with its trees and peace instead.

Status: married, again, and it’s wonderful

Car: Ford escort staggering on but on its last MOT and has to be changed.  Can anyone get enthusiastic about these things?  Not me.

Family: enlarging.

Music: Georgia Ruth, Ray Charles, John Fogerty, The Ventures, Max Richter – bought them this month.

Books: Edging The Estuary – the trail along the waterway – due March then June, then mid-July  and now July's end, 2013.  My fear of having a title out at the same time as the Eisteddfod boom at long last realised. 

Films: went to see Man of Steel and it was like being inside a computer game.  

What’s on the player as I write this? Neal Casal.  He visited Chapter once.  I somehow managed not to be there.

By Bike

Predicting when it will strike is rather like trying to tell when the next earthquake will ripple, out there, along the San Andreas fault.  There’s a whole science built around trying to tell when the earth will next quake.  Armies exist of researchers, observers, record keepers and data gatherers.  But my synovial cyst, the one there in my lower spine, bulging like a peanut, a jelly bean, a leak of oil coming out of the gearbox that is my no longer that powerful back - that one has only me keeping track of its meanderings, its appearances, its pressure points, its miserable actions and reactions

. 

I’ve been tracking it for almost a year now.  I use a spread sheet – giving it daily marks on the scale of 1 to 10.  1 equals barely discernible. 10 is screaming agony.  I’ve got to 8 and often hit 7.  The last time was on the way home from the Park Plaza bar in the drumming rain, Guinness sloshing inside me.  The discomfort just got to me. I had to sit on a university wall up beyond the Queen Street rail bridge.  Wait there to be rescued, rain in my ears, rain down my neck, rain in my face.  But sitting did hold the pain back.

I showed the spread sheet to my specialist.  Showed him the highlights anyway.  He took absolutely no interest.  They come and go these things, he told me, waving my scruffy bit of paper away.  They are hard to predict.  We have to wait and see if they are unbearable.  Are they unbearable right now?  I’m sitting there in his patient’s chair, stress banging through me on account of how I’m sure any minute he’s going to recommend me for a major op, metal inserted, walk with difficulty, never to be the same old me again.  No, they’re not.  I tell him this truthfully.  They aren’t.  This consultation morning unaccountably and unpredictably I’m utterly pain free.

The following week, however, it all comes rolling back.  The need to sit down all the time to gain relief.  Or to stand at a funny angle, leaning forward to out to the right.  It alleviates things.  I do it in the queue at the single basket till in Marks and Spencer’s.  Fellow shoppers look at me as if I’m a weirdo.  A loon just arrived from the farm.  Just got in from Mars, I tell them.  I have to stand like this because of the gravity. I smile.  They turn away.

I’ve moved house, too, which has made things worse.  There seems to be a direct correlation between stress and discomfort levels.  It’s as if somehow  the raised shoulders and strained stomach that accompany worry unwittingly open the neural pathways to the doings of the synovial cyst.  Let the bastard through.  Let him beat me once again. 

Not that I’m really that keen on allowing anything to actually beat me.  I fight back.  I’m trying whiskey this week which, despite not really doing much to interfere with the synovial process, certainly makes life feel a lot better.  In the new house I’ve got the single malts – I have a collection now – in a line at eye level in the kitchen cupboard.  Like books of poetry by poets I admire.  Inspirational and always worth returning to.

I forgot to take the prednisolone yesterday and, if truth be told as Nessa would say, I may well have forgotten the day before too.  Post move the old routines have all collapsed.  I barely know where I am.  I opened a box marked in the removal man’s scrawly hand as “shoes”.  It contained cushions.  I did see a box labelled “drugs” in the back of a new cupboard somewhere but have yet to find them again. 

The Brompton I have found.  My folding bike sits, collapsed like a transformer, under the stairs.  I’ll be on it tomorrow.  Leaning out over the handle bars at that Martian angle, moving while sitting.  A painless process.  And I can do it in the streaming, fresh faced,  open and very earthly air.

On Saturday 22^nd and Saturday 29^th June, 2013 I’ll be conducting a Cardiff delta exploration, to be done by bike.  The estuary that is Cardiff revealed.  The city you barely knew existed.  Two and half hours of anecdote, cycling, poetry, alternative history, topography and comment.  If you don’t own a bike we can loan you one.  More details can be found here http://www.cardiffcycletours.com/real-cardiff-by-bike/  No mentions of prednisolone nor synovial cysts.  Just maybe the odd Martian lean as we cycle into the wind. 

Facet

So it goes like this.  I’m in the car driving back from the builders merchants with a boot full of home improvement requisites (batteries, screws, rubber gloves, a new saw with which to tackle the dead tree, a bucket, escutcheons, door knobs, glue) when the phone goes.  Being ultimately lawful I negotiate the bend and get myself stopped on the kerb before I take it.  With a voice sounding like something direct from Stella it’s the hospital.  Ringing me. Gosh.

It’s  UHW X-Ray here.  We want to get you in for your facet joint injection.

What?

Your facet joint injection I’ve got you down here for one. Mr Finch.  Yes?

Yes, but that request was made months ago when was in real pain.

Oh there’s a three month waiting list see love sorry can we do you Friday?

No.  I mean I was in pain, enough to boil eggs on my back at the time,  but in the nature of this cursed condition that’s passed now and I’m pain free again.  Well, relatively.   I don’t see the point.  Can I defer it?

I’ll put you down as a cancelation then.

No, don’t do that.  I needed that injection when it was the only thing available to me that could alleviate the pain and then it wasn’t available.  I had to wait.  When I rang up your department said they’d get back to me soon.  And it’s been 90 whole long days.  If I’d turned up at A&E after falling down drunk you’d have got me round to X Ray and checked my bones for breaks almost immediately.  But because I suffer from a condition (as opposed to getting pissed which I guess is just part of daily life) I’m slung on an NHS waiting list.  That’s not equitable.  I want the thing deferred so that next time condition strikes I can call down my already done waiting time and have the thing straight away.  Can I do that?

I listen but she’s gone.  It was my use of the word “equitable” I’m sure.  The line is dead.

I check the private medicine website.  Facet Joint Injections.  Available within the week.  £500.  Nye, your great vision has become terribly muddied.  I decide to go to the pub instead.

   

Rebuilding

In the car park at Llandough the easterly wind is cutting through my jeans.  It’s March and the weather is following form.  There’s no one here, hardly.  Some workers on the hospital redevelopment, their vans dots the tarmac.  These are the trades in all their multiplicity -  plasterers, electricians, heating engineers – no job too big or too small – all aspects of building work undertaken – style added in olde English font, mobile numbers the only point of contact.

My appointment is for 7.45 am, an out of regular-hours slot beaten only by the 8.00 pm Saturday evening appointment I was once offered by X-Ray. The Llandough waiting room, a warm refuge full of happy posters and machines offering granola bars, rice cakes and healthy bags of nuts, has one other client.   In the vastness of the sea of chairs we sit not acknowledging each other.  He’s on sticks, unshaven, wears a builder’s check shirt coupled with trackie bottoms.  He’s got a Bluetooth hands free stuck in his ear in case anything urgent comes up.  Nothing does.

The receptionist has turned on  breakfast TV for our pleasure.  Primary colour vapidity delivered by a   well-groomed couple lounging in arm chairs.   Their voices bounce excitedly in that new century pre-fab high street manner where everything is perky bright and vicissitude is permanently banished.  The book I’m reading can’t compete.  It’s a history of the blues with stories of black men in river deltas twelve-baring themselves to fame and Muddy Waters sitting outside Mississippi juke joints thrilling to the sound of his first record coming at him out of the windows.  But before the hi-vol emptiness of early morning TV it’s a total non-starter.

Right on the button I'm called in and asked questions.  I’m  made to stand on tip-toe and have rubber-headed hammers tapped on my knees and lower legs.  Bend your knee.  Straighten it.  Fine. We, the consultant and I, gather around his computer screen and look at a flow of successive images. These were taken during my last MRI scan - my spine revealed in cross section.  Bones and the shadow shapes of muscle and cartilage. There it is, says the consultant, pointing.  The white blip of the cyst.  I’ve seen it before.  It looks like a seed – a flageolet or a butter bean.  It moves and presses against the nerve.  Is it hurting now?  No.  Excellent.  You are having a good day.  He smiles, indulgently.  We’ll let it alone for three months and I’ll see you again.  If it’s still a problem them we’ll have you in, push this muscle aside, cut out a bit of bone, drain the offending cyst  and then put some metal in there to hold you together.  I don’t know if I should be stunned or not.  I don’t say anything. We shake hands and I go - back out through the morning wastes of the TV drenched reception and through the double doors into the cold air. 

There’s a familiarity to all this.  The consultant spells out a future and then you find yourself  wandering the car park, your vehicle lost, your head full of fear and fury.  But I get straight to it, the green car of mine with the rust everywhere and the demister which hasn’t worked for three years.  I  climb in and drive back.  Rock and roll on the player.  Old stuff, like me.

At the house my construction workers are moving apace.  Where the dining-room wall once was are now acro props and dust.  Out back in the wreckage of the garden a cement mixer cranks and spins.  The walls of the new extension are rising from the flower beds.  Where they meet the house they mesh.  There are metal pins strapped across the cracks in the plaster.  A man in a check shirt is tapping the brick work with a hammer.  Another is squirting gunk from a syringe into the gaps.  They are similar processes,  surgery and construction.  Both start early, both remove rot, both fix by pin and glue.  One set wear check shirts, the other gowns and bright hats.   Both walk away saying see how you go.  If you have any trouble give us a call.  All aspects covered. 

Should I be worried?  Given the prospect of having to spend a fair slab of time on my back waiting for post-op recovery not to speak of running the risk of something going wrong and the pain not disappearing but increasing I guess I should.  But there’s been so much of this stuff, going on for so long and appearing and reappearing so often that I’ve come to accept this as the norm.  Just be grateful, I tell myself, that you are hanging on in.   Like I say in the poem:

Beat

John Tripp  59
B S Johnson  41
Arthur Rimbaud 37
Buddy Holly  33

Kingsley Amis  74

not managed him yet

But I will.

Beyond The Day Care Unit

Physiotherapy sits in a wasteland way up beyond most of the clinics I already know.  It’s deeper into the hospital than X-Ray or Pharmacy, both places where I’ve spent more hours on hold than I have with BT.  It’s beyond  Short Stay Surgical where I’ve sat in fear and trepidation waiting for catheters to be inserted and cameras on long flexible sticks to be turned on.  It’s out there, further than the cubby hole occupied by Radio Glamorgan, UHW’s own station.  Here Vince Savile, hospital porter and brother to the late ungreat and now late himself other Savile once deejayed.  Does anyone now listen to these enterprises?  There are nineteen presenters all beaming in the staff photo and twenty-three thousand visitors recorded as having visited the station’s new web site.  Local radio clearly rocks on.   Then there it is.  Physiotherapy announces the sign.  I’ve arrived.  The waiting room is dense with seats,  buff,  serried, uninviting.  There’s a rack next to reception where you can leave your crutches.  The art of the recycle. The places is like Lourdes.

I’m here to learn how manage.  What can't be fixed can certainly be accommodated.  So I'm told.

Rich, his name is on his badge, the man who will sort me out, is fitter looking that I was at his age.  In fact he’s fitter looking than I’ve ever been at any age.  With his huge healthy hands he takes notes, asks questions, learns about my case.  He checks my records, my graphs, my MRI scans on the hospital system.  He tells me that it’s the cyst that’s the issue and the way it bulges, flows, ebbs, and presses.  I had an idea it was. We can’t solve it here, he says.   But we can help manage.  Yep.  Manage.  Word of the age. 

I get a demonstration of lower-back specific exercises – stretches and flexes – things to help with the discomfort, when it flares.   He hands me a sheet showing the routine being done by a stick man.  Round head, smiling face, no hair, thin body.  Me.  To a tee.

Back home I do the stick man thing while staring out of the window.  Point hands at feet and hold for thirty seconds.  Sit up.  Bend back.  Breathe.  Repeat. 

Beyond are men here to build a new extension.  They have their hoods up against the cold and wear knee-high leather boots like they might have done  at the battle of Omdurman or when riding through the brush in the cowboy west.  Now it has stopped endlessly raining  they are digging up the patio.  They uproot plants and crack slabs into slivers ready for the arrival of the mechanical digger.  This wonder machine on tracks will excavate the footings.

  

By now, like me, this house had almost all of its innards explored and tested.  It’s old, it’s been around, it needs some tlc.  Rods have been inserted into cavities, coverings have been lifted to check the sub-structure.  Cracks have been discovered, stitched and sealed.  Roofs have been waterproofed.  Steps mended.  The framework has been stabilised.  Damp ingress excised.  Blood counted.  Temperature taken.  Wiring renewed.  Body declared to be about as okay as it’ll ever be “for a build of this age”.  It’ll all be okay for the medium term. 

Quite how long that medium term will be is no one is actually prepared to say.

The sky is cold, winter blue.  Uprooted plants and fragments of slab begin to appear stacked in the skip.  The dross we no longer need.  When they are done I’ll get the guy on the roof with the scraper and the claw hammer to have a go at Mr Synovial down there in my lower spine.   Hit it a couple of times, squeeze it out and then stick the incision back together with two screws, some hi-flo instant set grout and a metal strip.  Plaster over.  Allow to dry then paint.  You’d never know there’d been anything there.  Okay for the medium term.  That’s all I need.

I have a cup of tea and two naproxen.  Next week I see the neurosurgeon.  He does scraping out and re-grouting, so I’ve been told.  Does it with micro precision  and has an 80% success rate.  He doesn’t wear a hood and comes to work by BMW and wearing  patent leather shoes.   He probably doesn’t listen to a radio which has a large battery stuck to its outside with masking tape.  That’s my guess.  But how do I know?

The Blues

In the waiting room I have my head deep in my book.  It’s in so deep that when they call my name I fail to hear .  It takes the receptionist tapping her feet in front of me, files in hand, to get me to stir.  This is the Welsh National Health and I’m being called in more than fifteen minutes ahead of schedule.   Aneurin Bevan, your dream is coming true at last.

The trick is, of course, that after checking your weight and your blood pressure (what do you want me to do? I’ll need an arm) and your name and address, mother’s maiden name, medical number, GP details, birthdate and secret password (mine is arse, apparently there’s a move on to popularise these once discredited words) I get to sit in waiting room number  two.  Empty apart from me and my book.  Medical students come and go.  A trolley of files rolls by.  The leaflets on the notice board advertising the rheumatic hip self-help group  and what to do when you fall over flutter in its breeze.

I’m reading the late Robert Palmer’s Deep Blues, an excellent history of blues music.  Palmer was a music journalist and fanatical record collector with a personal library of blues albums that ran to thousands.  He’s explaining how it was that jazz improvisation came from negro string bands and early jump-up  groups having to extend the length of their numbers.  They had to do this to satisfy the demand of dancers who didn’t ever want to sit down.  Middle of this my name again gets called.  This time I hear. I pad my way to today’s target - the consultants room.

It’s all centred on this.  Me sitting there before the doctor, a pair of silent students arrayed left, my file in all its fat and paper-stuffed glory in the centre of the desk.  The pred levels we’ll leave as they are, 3 / 4  mgs on alternative days, the consultant tells me.  Get that down to 3 mgs each day by the end of the month.  The synovial cyst is the real issue.  Your MRI scans show that it might not be growing but  it’s certainly there.  They are so unpredictable these things.  It will take just a small shift  for the pain to start for you again.  She frowns sympathetically.  You are not in pain now?  I was last week but today, no.

There are drugs we could put you on, gabapentin for example, but it does have side effects.  I get read a list.  There’s everything I've heard before on the prednisolone danger directory and then more.  Fat face, night frights, pain everywhere, bleeding stomach, head spins, fear of the outdoors, suicidal tendencies, hiccups.  Get all those and you’d never leave your bed.  Not everyone will suffer from these side effects, she tells me, reassuringly.  Up to you.  For now I’ll pass.

We’ll see what we can do with your visit to the neurologist, she continues.  You’ve already been on the waiting list for 3 months, can’t be long now.  I’ll give him a call.

Then I’m back on the street.  Nothing actually prescribed and nothing new to do.  There are a few specialist consultations out there somewhere in the future, maybe a spinal injection if that department gets its act together and another visit to Rheumatology in six months’ time.

What would Charley Patton or Robert Johnson have done?  Sung about it a bit accompanied by their slide guitars, Pain Down My Leg Blues,  Hollerin’ ‘Bout Gabapentin, Shake That Synovial Thing  Mama, and then retreated to the bar.  Alcohol, the great cure all. If in doubt put half a bottle of Wild Turkey down your neck. 

Patton died at 48, Johnson at 27.  Doesn’t really give you hope. 

Pain Is Not A Precise Art

Sometimes with pain  you can make it start.  With luck you can also make it stop.    In my case that’s stand up, stretch a bit, and then the electric begins to flash.  Sit and lean forward and after time the sparks begin to stop.  But pain, of course,  has an antipathy to regulation, and it has ghosts.     Just when you think it’s gone it comes drifting on back: a veil, a bank of fog.  It settles around you like a dark cloak.  From out of the past there it is:  a heavy hand holding you back.

In desperation I’ve done all I know.  High dose prednisolone, double naproxen, same for co-codamol.  Yoga breathing.  Hot compresses.  Ice.  Lying in a dark room,  foetal position, Neil Young’s Psychedelic Pill on the player, loud, just to cover my moaning.  Today, though, we try for the light.  Out there, under the blue sky, heading for Homebase.

It’s a simple activity.  Car journey, car park, short walk through the green-framed doors past the display of cut-price couches, wheelbarrows and January-cheap Christmas decs.  We’re heading for the lighting.  New stuff for the hall.  Easy.  But, naturally, it’s not. 

The whole world has changed here.  Where once I knew instinctively what a 60-watt bulb looked and felt like, how bright it would be, how long it would it last, how much it would cost, how hot it would get, how many times I’d need to change it,  today I’m lost.  Watts have become lumens.  Simple standard bayonet and screw fit have been replaced by multi-sized  prongs, screws, turns, clips and holders.  The bulbs themselves have  branched into LEDS, halogens, incandescents and energy-savers with subdivisions that involve sodium, mercury, metal halide, sealed beams and shatter-proof tops. Bulb shape is a past thing too.  Today they are lozenges, globes, pyramids, cubes, drops, prongs and bubbles.  Lamps in profusion.  I have no idea which one I want.

Above the racks Homebase helpfully display a poster which demystifies everything.  Except it does not.  Lumens mix with watts, old merges with new, nothing is clear, nothing gets printed on the sides of the Made In China bulbs in the display below.   I’d like it bright.  Chances are though that I’ll end up buying something that takes ten minutes light up and will even then not be bright enough to find the door.  There’s a light like that in our bathroom.  I refuse to go in there for a pee without a torch.  

Right here the pain intervenes.  Electricity in the lower leg.  Rising fire.  I retreat to the store’s display of occasional furniture and sit. Usually works.   I’ve chosen a sort of armchair that looks like a throwback from the 1950s.  The past keeps recycling.  But then I’m old enough now to have got used to that.

I lean forward and try to make myself invisible.  But it’s no good.  An extended family of Chinese origin arrive, clearly in the market for 1950s throwbacks, and start to examine the chair while I’m still sitting in it. They want to see how it revolves.  One of them gets down and peers between my shoes to check the mechanism.  “This is comfortable?” he asks.   Yes, I nod, handing him the price card.  £50 it says.   I get up and stumble over to sit, instead,  on the edge of a unit which displays various sorts of tile cement and other things in tubes reduced for a quick sale.  The Homebase bargain bin.  Do I want anything?  Other than an end to the roaring pain, nope. 

The Chinese family have decided that they will purchase the chair and are carting it off towards the check out.  Good luck.  I thought it was overpriced.   We return to the car.  Sue has a bag of bulbs under her arm, she knows how to decode the new lighting world.  All I can think of is relief.  What it feels like.  How long it might last.  How to make it arrive. 

And then it’s no longer there.  I’m sitting and watching the road go by and become slowly aware that the pain has gone.   The immediate future, despite low wattage, might be bright.