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.