God of the Sea

This is the beach where Ulysses was washed up after his battles with god of the sea Poseidon.  Ulysses, hair in damp straggles, naked and unconscious on the sand, was revived by Naussica, daughter of the King of the Phaeacians.  So wrote Homer.  And as a reminder there’s the Naussica Taverna full of sweating and Homer reading diners staring down at me from the cliff edge.

Naussica – in Greek her name translates as burner of ships.  But out in the bay there are nothing but peddalos and heat. 

The beach itself in the parts that aren’t forever British is entirely Russian. They don’t look like us.  The men have bellies that protrude but don’t flop.  They wear tight and tiny bri-nylon swimming trunks, just like ones I used to have in 1977.   They sprawl across the Thompson Holiday loungers smoking their Russian cigarettes.  They don’t read.  They play cards, they drink. They lunge at the sea and emerge bronzed and dripping.  A woman with a tattooed Venus on the half shell climbing her belly.  A man with a bear growling up his.

I’ve gone to Greece with my prednisolone packed into both my check-in and hand luggage and with an extra packet in my pocket just in case.  The polymyalgia bubbles under.  The treatment is working.  No more proximate muscles like rusted slabs aching like they were trying to jump me to Mars.  Instead I have my new fellow traveller, the sly and slippery synovial cyst.

This one sits somewhere in my lower spine and can only really be subdued by high-strength co-codamol supplemented by Naproxen, a sort of super ibuprofen on speed.  Sounds good on paper but in practise it just makes you numb.  A better cure turns out to be alcohol which relaxes things enough to ease the agony.  We brought gin out bubble-wrapped in Sue’s suitcase and the local beer isn’t that expensive so things should be good.

Out walking I can feel it, Mr Synovial, pressing the sciatic nerve and making my lower leg feel like it’s got a cold chisel in its centre moving up and down.  With PMR you could run a bit and the pain would go.  With this one you have either drink or lie down.  And as the one often leads to the other, I find myself doing both.

In Corfu Town – Kerkyra –  after a long sit in a café opposite the truncated British cricket pitch we visit the Church of Saint Spyridon.  His remains are here in a gilded box, closed today but still touchable.  A line of Greeks take turns to kiss the place where his feet might be.  On high days they take him out and parade him through the streets.  He’s a preserver and a fixer.  Saint of salvation and health.

A women next to me scribbles something in Greek onto a piece of paper and puts it in one of the saint’s waiting bowls.  There’s a whole stack of other slips there.  They tower.  Prayers, pleas for help.  Worth a go I decide.  Help me, I write, Saint Spy, see if you can do something about this spine of mine.  I leave the slip unsigned.  Saint Spyridon will know who put it there.

I follow up this uncharacteristic act by buying a six inch candle from a box near the door.  I’m heading for the spot just outside where similar candles of supplication have been stuffed into a pit of sand and melted wax.  They waver and flame.  They look the Orthodox part.  Behind me an entire extended Greek family are emerging from the Church.  They carry candles too, all nine of them, women in black, children in trainers, men in suits.  The difference is that while my candle is 6” long theirs are five feet and thicker than your leg.   Aflame like Thor rockets they dwarf my miniature squib.  Beijing Olympic fireworks beside my November the fifth. Next to the candle dump is an icon depicting the great man in his golden beatitude.  The family take turns to kiss the image.  At this level of investment they are bound to get whatever it is they want.

Me?  Not a hope.

But then again it’s now a week later and I’m back home in the drizzle again, Saint Spyridon  a sunny memory.   The Cyst is still there but, amazingly, it is quiet.  No flares, no return of the lower leg cold chisel and no repeat of the shaking electric razzle scream of a pain I was getting up and down my right leg just before I went.   And I haven’t taken a naproxen since last month. 

Good boy Spyridon.  I'll be back.

Road Race

In an afternoon when the rain holds off long enough for the sky to go blue the best place to be is not in the city.   So I’m out on the roadside in Wales’ green desert, somewhere north of Builth.    The verge here has to be wider than my home garden, thick green, lush, durable.  The sun is on my back warming through my shirt.   It could be Hawaii but it’s Cefn Coed.  In the near layby a couple towing a caravan with a four by four are sitting on deckchairs drinking tea.  They watch the traffic roll by.  This is how we relax these days.  Roadside get away from it alls.

I’m  here actually to watch the Kate Auchterlonie Memorial Cycle Race.  Women in  lycra with numbers on their backs going past in a great herd on bikes.  As a spectator sport this one isn’t much.  The women do fifteen mile circuits passing me every half an hour.  They go at a hell of lick.  Lead motorbikes with flashing lights clearing the traffic, then a tight cluster of furious peddling followed by a few stragglers spread out down the road.  Blink and they’re gone.  And then it’s back to watching the breeze move the grass beyond the hedgerows and the kestrels hovering overhead until the women come round again.

To fill in time I march up and down the layby trying to free up the pain from my leg.  Is this the polymyalgia returning in a great flare?  I’ve upped the prednisolone from 5 mg to 10 mg.  The GP says it won’t matter in the short term but the head is already filling with fog.  I do a series of leg stretches, squats and knee presses.  I am watched blankly by the couple drinking tea.  I smile back  but they do not react.   

I go behind a tree for a pee and am immediately spotted by a vehicle traversing an otherwise totally abandoned dried up off road track.  The occupants wave.  The countryside’s synchronicity.  I pee on pretending they are not there.

The cyclists come round again.  I give them a cheer and clap a bit to offer encouragement.  For them traversing this circuit must be like watching paint dry.  They disappear into the distance.  I do a few more knee bends to beat the PMR back.

Up at the clinic the following day I get the news.  This isn’t polymyalgia bubbling up from where it’s been sort of slumbering.  Instead it’s my new friend the spinal ganglion cyst.  This is the growth the size of a small grape that’s insinuated itself somewhere in my lower spine disrupting the way the nerves work.  The result is leg pain, foot pain, and thigh pain, often all together,  in long slow burns, in starts and shakes and rushes and aches.  They fade and then they come back. They go and then they stay.   

The consultant puts me in the loop for another MRI scan and a further set of spinal injections.  Might fix it, might not.  You’ll also need to see a neurosurgeon who will discuss with you the risks involved in having the cyst surgically removed.  Risks?   The surgeon will explain it all to you. Doesn’t sound good.

I do the anticipated circuit of bloods, weight, urine sample, and BP measurement ending at the pharmacy where the great team of twenty or so NHS dispensers, heads down hard at work, take an amazing 30 minutes to get my prescription filled.  At the local Co-op the single pharmacist turns my monthly prescription for four different drugs and a tub of chewable calcium round in five minutes.  There’s a lesson here.

On the wall of the UHW Pharmacy next to a sign reading “Antibiotics will not get rid of your cold” is another which says “To ensure patient confidentiality please do not stand or wait against this wall.”  Better not hang about here I say to the old lady on sticks queuing next me.  She frowns.  I don’t have a cold she says, shaking her head.

On my way out under the grey shell of a sky, new tablets in a giant bag under my arm, I go through what the consultant has told me.   Hope for the best but the best is often elusive.  Try.  Live in the moment.  We’ll see what these new tests throw up.  Let’s see how you get on.   I’m really sorry this has happened to you.  She is too.

I’ve asked her if there’s anything I should now not do.  Stretch?  That’s fine.  Exercise?  That’s good but try to avoid running.  The action of all that pounding jars the spine.    Go on the bike instead.  It’s the perfect activity.  Cycling – much better than watching paint dry.  Sure is.

      

Slicing The Air

I’ve barely time to open my book among the waiting queues  at clinic six.  I’ve Nightwoods, Charles Frazier’s dark novel of North Carolina with me.  In this the violent mixes with the lost among the endless trees of the time-stuck Appalachians.  Frazier came to fame a few years back with Cold Mountain.  In the film of this Sacred Harp singers can be seen beating out the rhythm of  the shape-note rouser I’m Going Home, their hands celebrating  glory, slicing the air.  God is with them in their singings.  He is all around.  Down here in the clinic he also hovers, although maybe with not quite the same all-pervasive fire.  Files arrive, delivered in what looks like an ex-Tesco trolley.  Mine is on top.  I’m in. 

I’m also back out.  Five minutes is all it takes.  The prednisolone levels are continuing to fall.  I’m down to 5 mg now, a dose at which most side effects cease to be visible.  Healing, however,  will still be slow and susceptibility to infection from just about anywhere a worry.  The tests all show you as normal, the consultant tells me.  She smiles.   Normality, the aim of us all. 

A day later and I’m up the road in the Department of Oral and Maxilio-facial Surgery being told that the prednisolone will certainly interfere with the healing following my tooth extraction and that the alendronic acid may compromise bone recovery.  Polymyalgia, your tentacles get into everything.  Prednisolone go away.  I took 5 mg this morning.  I’ll have a go at 4.5 mg tomorrow.

The extraction is carried out by a dentist from County Clare wearing a white smock  two sizes too big for her.  Amid the small talk about the loveliness of Ireland and the wetness of Wales it sways about like a duvet cover. I get two mouth-deadening injections of lidocaine with another  six added as the procedure rolls.  My mouth doesn’t like giving up. 

She’s great at the talk, put the patient at ease.  We’ll just loosen it up a bit first.  You may feel some pressure.  Snap.  There, that’s the crown off.  Now let’s see if we can get it out in one piece. Snap.  No.  This is a difficult one.  I’ll have to just move around a bit.  You’ll feel more pressure.  I do.  She’s told me to raise my left hand if I experience pain so I lift it up.  It’s like the northern lights in my head.  More lidocaine. Then more again, just to be sure.

A second dentist who insists on calling me sir arrives.  He is bearing a drill.  We’ll just see if we can cut into this.  No.  We’ll have to slice the socket.    No.  Yes.  Crack.  No.   Have to cut a bit of bone out here, just so I can get a grip.    I Raise my left hand and get another shot of lidocaine.  My mouth is starting to feel as big as the Severn Bridge. 

But eventually it’s done.  My mouth is sewn up and stuffed with gauze.   Fragments of my left lower rear molar lie like pieces of moon rock on a dental tray.  I get a free packet of surgical cloth for use in supressing bleeding and a badly printed instruction sheet.   “For the rest of the day take things quietly” this says.  “Take only cool non-alcoholic drinks.  Eat a soft diet.  You may sit up but do not lie down.”   

Will Marks and Spencer sell things I’ll be able to cope with?  Rice pudding, coddled eggs, luke warm soup.  I’m sure they will. 

Back home sitting up but certainly not lying down and with a glass of 15 seconds in the microwave water beside me I stick on the Cold Mountain soundtrack.  I’m looking for spirit and uplift.  But instead I  get the Reeltime Travellers doing “Like A Songbird That Has Fallen”.  Pretty much it I suppose. 

Fallow

It’s a fallow period.  No consultations, no tests, no health scares.  A quiet time of simply taking the prednisolone each morning and flickering the dose between 6 mg and 7 mgs to keep the pulsing pains at bay.  The target dose is 5 mg.  Decrease should be no more than a single milligram in two weeks.  At this rate I ought to be into freedom territory by high summer.  The body’s own cortisol production is around 5 mg daily.  Since starting on prednisolone my own production has atrophied.  Getting it restarted needs balance and care. 

I look at the line of drugs on the shelf: Omeprazole, Calcichew, Alendronic Acid.  Support dope to counteract the effects of the Prednisolone.  They stop you being sick and keep your bones from thinning.  I guess they’ve worked.  Further along are some hopeful things – Vitamin D, Echinacea, Zinc, Concentrated Cranberry, Saw Palmetto Complex.  This is the snake oil end of my medicine cabinet.  Tablets that work by trust rather than fact.  Mind over matter.  Hope instead of surety.  Belief.

I’ve read the books – how to walk through walls.  How to fly.  How to speak without opening your mouth.  How to lift things by thought.  How to tell the future.  How to walk on water.  None of those things ever worked.   I have great hopes, however, for what it says in my edition of How To Beat Polymyalgia Rheumatica.  People do beat it, it assures me.  It doesn’t go on forever even if it might seem like it does.

Then I hear the mail arrive.  In the days when I was an aspiring poet and sent my efforts out for consideration on a regular basis the thump of paper hitting the doormat was a familiar sound.  I always felt that rejections were like police raids.  They arrived at dawn, unannounced, and were usually upsetting.  Thank you for sending your poetry for consideration but our editorial team felt that despite its high literary values it isn’t for us.  May we wish the best of luck elsewhere.   What they actually meant, of course, was your  verse is rubbish, we suggest you put it in the bin.  But no one ever said that.  The literary world can be overly polite.

Today it’s a padded bag.  Inside is a well-wrapped bottle of something called Gastrografin and a letter summoning me in to Radiology at the Heath for a “CT Thorax and Abdo and Pelvis with Contrast”.   The letter has stern warnings about wearing jewellery and eating beforehand.  Drinking squash is okay, apparently.  Although being over 25 stone isn’t.  There’s a special number to ring if I am.  I commit this to memory just in case.

Fallow period over then.  My letter is signed by someone called Emerctbodywithgastrotemp V2.  If I don’t attend the appointment, writes Ms Emerctbodywithgastrotemp, I’ll be removed from the waiting list and my referring clinician will be informed.  

I send in a message by telepathy.  I’ll be there, don’t worry.  Thank you for your concern.  That should do it.  Then I go out for a walk in the drizzle.  Fits my mood.

Coming Down The Up Stairs

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

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

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

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

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

How Do You Fill Your Life

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

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

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

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

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

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

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

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

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

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

Fine, fine.    But I’m not.

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

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

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

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

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

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

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

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

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

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

The Urologists Stay Around

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

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

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

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

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

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

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

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

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