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. 

   

Teeth

The pred levels are sinking.  I’m down to 3 mgs daily now and on such good and familiar terms with the wonder drug that I’ve dropped the nisalone bit from its name in favour of something more streetwise.  For now the polymyalgia is almost a memory although I’m sure its traces lurk down there in the dregs at the bottom of my bloods.  The new enemy, and one of considerable power,  is the spinal cyst. 

Looking at the dates on this blog it’s obvious that I have been severely distracted for several months.  The latter half of 2012 has gone by without comment.  This doesn’t mean, of course, that little happened during that time – the reverse in fact.  Between September 2012 and January 2013 I've been property developing, to live in rather than sell on. The opportunity presented itself last October so my partner and I went ahead.  We sold up and bought anew.  A big house with its own drive half-way up Penylan Hill.  Don’t underestimate the attraction of a drive.  In the Cardiff world where the car is king and the pavements thick with cyclists having a drive is a bit like owning a strip of 5mg prednisolone – salvation on hand whenever there’s a need.

With gusto we set the sell and buy circus in motion.  I have a dim memory of the last time I did this, way back in 1979. I swore then that because of the stress, expense and outrageous hassle I’d never do it again.  Why  in 2013, then,  have I decided to ignore those warnings from my younger self?

Out there in the world of land and property  is a line of essential organisations who need consulting, paying, obtaining permission from, paying, talking to, paying, obtaining clearance documents from, paying, and just for good measure, paying again.  The line stretches out to the horizon and the faces blur.  The mesh of commercial, legal, fiscal, and governmental interests, all acting with due diligence, comprehensive record-keeping, and a clearance fee on each occasion (to cover essential costs) out bleaks Bleak House.  The cash in the bank account whirls down towards zero.

In the middle of all this, with builders taking the floors out, new central heating going in and the internal water supplies being rerouted I decide to have my mouth repaired.  This is the latest episode in a long-term saga which I won’t bore you with here but suffice it to say that for several decades now I’ve been a regular at the local dentists with broken bicuspids, misaligned molars, contracting canines and collapsing crowns. On a good day I can fracture an incisor on a banana.   

At the Dental Hospital they’ve made the offer to rebuild and I’ve accepted.  This means six or more two-hour attendances, drilling, pulling, refacing and reinserting with I don’t know how many injections of lignocaine to help us along.  I’ve read Martin Amis’s recollections of his own time in the dental chair.  That's in Experience,  his 2000 autobiography and a book with a lot more going for it than many of his novels.  I should be prepared.

When I get to UHW  the car park is unaccountable cordoned off and closed.  I park a mile away and head in on foot.   The rain is coming down as only January ran can and the cyst is letting me know what the world is about.  Pain is coming up my right leg like jets of fire.  Half way there I have to stop and stuff my mouth with painkillers.  I’m carrying naproxen and heavy-dose co-codamol. For good measure, as the pain is wrapping itself round me like a poultice, I swallow an extra  5mg of pred.  Might help.  It’s an anti-inflammatory after all.

In the dental chair I’m floating.  I’m set out so that my head is lower than my feet and I’m injected on both sides.  I’m not sure which world I’m in.  To hell with what’s going on inside my mouth all know is that the leg pain is going and then, after time wobbles a bit, is gone. 

A couple of hours later I’m in the Japanese recovering.  This style of dining has been chosen for a) its freshness b) its lack of calories and, more importantly, c) its ability to deliver a decent full meal as a sort of non-tooth threatening mush.  Ramen – chicken bits and noodles.  Soft as a brush, just right.  I’ve a bottle of Sapporo (4.7%) in hand and a bowl of edamame  as an appetiser.  Around me there’s a  multi-cultural melee of young people chattering and eating while simultaneously  pushing  their fingers at their smart phones.  They are dining on raw fish and seaweed, udon doused in soy and crab’s legs coated in batter.  It's the modern way.

I go for broke and swallow another 5mg of Prednisone with the beer.  That should fix it.  The top of a back tooth snaps and comes away like pieces of badly-fixed render.  I’m unfazed.  This has happened so often before so why should I be?   I’m back at the Dental Hopsital in a week or so, they’ll sort it then.

More importantly the synovial cyst pain has gone back to that place where pain goes when it needs to recover its juices a bit.  A fog in my lower back.  It’ll hang there, hiding, and come back out to burn me again tomorrow.   But for now it isn’t with me.  Glory be.  What made it go?  Pred, NSAID,  pain-killer, dental injection, lying upside down, time, wishful thinking, prayer, luck, or beer?  One of those.