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

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. 

Chemists

At the Chemists I am now a familiar figure. The shop is really just another waiting room with make-up and perfumes on the wall, a privatised branch of the NHS where you hang around until your number is called. At this point you once had to hand over cash but now, this being wonderful Wales, you don’t. I’m there collecting the usual shedload of Prednisolone, Omeprazole, Calcichew and Alendronic Acid. Boxes, packets and tubs. For reasons I can’t quite explain the extra Vitamin D I’ve been told I need don’t come on the prescription and I have to buy them myself. But the rest is uncharged, courtesy of Aneurin Bevan, praise be his name.

Usually I get presented with the biggest bag the Pharmacists have and stagger out under its weight but today I’m beaten by the woman in front. She’s wearing a sort of dinner lady’s coat and has a series of dirty looking plastic carriers hanging from her arms. The bag she’s given is so big that it looks as if it might contain everything from oxygen cylinders to a spare artificial leg. There’s a clanking rustle and gush of cold air as she tries unsuccessfully to negotiate the door to get back into the street. I assist. I’m an old school gentleman. I get no thanks, not that I’m asking, just a slight smell of stale dog mixed with wet coat. She ought to bring her wheelie trolley, says the assistant behind the counter. Free NHS forever. I nod.

I’m offered the new we fix it for you and sort your GP deal – complimentary for me and for anyone else that wants it for that matter. The Pharmacy will call my GP monthly and order my drugs. They’ll collect the prescription and then make it up. All I need to do is be at the end of a phone when they call to ask how many tablets I need and then be able to walk round to their shop and actually collect the stuff. So slick. A wonder. I sign up.

But sometimes these things go wrong. Back in my pre-Steroid days when my slight eczema, about the only thing I had wrong with me, was controlled by tubes of DiproBase. I was once prescribed cream but given ointment by mistake. This came in dozens of small tubes which are still stacked in my cupboard upstairs. I should return them, or throw them out. Prednisolone’s one great advantage (other than its main function as a PMR suppressant) is that it appears to sort out itchy skin. But I’d have that back any day.

Back on Newport Road, my main drag, the land where it’s pretty hard to spot a permanent resident, the world rolls on. Up near the funeral home the immigrant Eastern Europeans are standing leaning on their garden wall, cigarettes lit and cans of lager in their hands. It’s a hard life and it’s not yet 10.00 am. The push chairs are rolling and the Africans pass me on their bikes. East Cardiff centre of the world.

Songs with Prednisolone in the title: none

However you can listen to The Steroids, DJ Steroid, The Steroid Kiddies, Steroid Freak Pussy, A-Steroid and Steroid Maximus on Spotify. You can do it anytime you want. My guess is that those bands’ steroids are to do with enhanced performance rather than moon faces.

But back to the blog. You can tell this is an up day, can’t you? I must take advantage. Some days have more black dogs than others. Not all days are the same.

Clinic Six

I’m at Clinic Six. The room is full of people on sticks. They are on crutches, leaning against poles. They’ve arrived with helpers. Turned up on their invalid electric bikes, their automated wheelchairs, their machines for getting around. Rheumatology. Where the world is clearly worse than I imagined it to be. I check in and wait. Read my book. And I’m the only one. Everyone else stares into space.

The NHS Trust here has recently extended its ban on smoking to everywhere on the premises – wards, corridors, ante-rooms, porches, car parks, walkways, gardens, open spaces, under trees, below lamp posts, in the rain and the wind. Totally banned. The nearest place you can now light up is at least a mile and half from your hospital bed, out there beyond state control, in the place where the locals live.

Outside, next to the signs reminding all that cigarettes have no place in an establishment created for the improvement of health, are a line of dressing-gown clad loners. They all have lit cigarettes in their hands. Smoke drifts across the pathway. No Butts No Smoking. Clean Air Zone. No Smoking In This Area. CCTV In Operation. Enforcement here is clearly a problem. Oblivious the smokers stare before them in a distracted daze.

Back in rheumatology I get the full treatment. A thorough body inspection, joint testing, chest listening, pressing, pushing, bending or arms and legs. This is the kind of check-up that the GPs of old would have engaged in but now they no longer have the time. I describe the history of my polymyalgia, the symptoms and their duration, their severity, what I did and what I did next.

We talk about the diagnosis and the treatment I’ve received so far and its effectiveness. I mention the flare and the fact that this return to pain doesn’t seem to be moderating much. I’m advised to stay on 15 mgs prednisolone for at least another week before considering a change. The dosage taper I’d been following was probably too steep. Fear of Prednisolone is one thing but without it the PMR comes right on back. Stick to 15 mgs one day then try alternating that with 12.5. See how you get on.

However, we still need to run a few tests, the rheumatologist says. I’m given a pile of envelopes and request slips, nine of them, and sent out to the nurse. More tests than I knew were possible. X Ray, ECG, three different sorts of bloods, urine (again), bone density, stress, some other stuff. I set off among the corridors looking for Bloods, then ECG, the urine nurse, finally X Ray. This is no good, declares the receptionist, giving me a smile that would frighten horses. This request is undated. She waves my bit of paper in the air. You’ll have to take it back. I look. She’s right. No date. I go to fill it in myself. You can’t do that, shouts the receptionist. Only the consultant can. Right, fine. I exit, lean against the wall in the corridor, breathe in and out a few times, complete the date in biro using my left hand, and then return. Bumped into the consultant outside, I say, my lucky day.

The X-Ray takes 30 minutes. Shirt off, sat in a corridor full of blokes in vests accompanied by their track-suit wearing wives. I read my book again. No one else bothers.

When I get back to the rheumatologist she’s already got my ECG print-out and tells me that it looks pretty healthy. Your joints were fine too. For the other stuff I’ll have to wait. For the bone density and the stress test I’ll need to come back. We’ll see you again in a month. Right.

When it’s all done and I’m back out on the free streets where the whole world could well be in action smoking if they wanted to but aren’t I ask myself how I feel. Better. Worse. Reassured. The last mentioned, I guess. Talking about all this helps, having someone demystify its complexities and offer real practical advice in itself improves health. Back home the spinach leaves, the carrots, the lo-salt crackers and the calorieless sweets await. The fight against face inflation, back hump and round the middle flab continues. Any donut shops between here and there? Nope.

The Reading

What’s in front of me this afternoon is a reading. This is what I do. Poetry readings. Down the years I’ve got reasonably good at it. I’ve worked out how to manage an audience, how to pitch the voice and ensure that those at the front don’t get shouted it while those at the back can still hear. I’ve learned some of the things the great striders of the stage down the years have recommended:

Look your audience in the eye. Engage with them.
Try to stand in one spot.
Project the voice.
Know what you are going to read before you go on.
Keep it smart, short and sharp. Leave them wanting.
If people arrive late ignore their interruption.
If they yawn or leave early do the same.
If someone heckles you attempt to sell them a book.
Try to be entertaining.

I’m on as part of the Made in Roath festival. Shelagh Weeks has fixed it. I’ll be reading with Amanda Rackstraw and Sian Preece. I guess they’ll be on first. Organisers usually leave me to last as I make a noise and can get people to laugh. Well, I used to. How on earth am I going to manage this with my confidence completely blown by the rampaging prednisolone? I feel about as sure of myself as a autumn leaf. And about as ready to take on the world. I could drop out. Make an excuse. I could, couldn’t it?

But I don’t like to do that. Something in my professional nature prevents me.

The reading is to be held in Havelli’s Restaurant half way along City Road. 4.00 pm. Sunday afternoon. Most of the Made in Roath Festival is open galleries – the artists of the entire extended neighbourhood all open their studios to the public on the same weekend. They sell things, give things away. People tour the district in droves. The reading is an enhancement. Given its timing – after a day of gallery viewing and before the evening’s musical finale - it should be low key.

And in the event it is. The audience is small. They sit at their tables drinking tea and coke. I’m on third, as predicted. Amanda is marvellously on the button and very entertaining. Sian reads a short story and has the audience all full engaged. Then it’s me. I’m on my feet, wearing my black corduroy suit with my set list in my hand. I stand there and mentally wobble. Shelagh introduces me. I can’t do this. Whereas normally I would bang straight it, engage the audience with something immediate, then tell them a joke, then roar on, this time I start to flounder.

But deep inside, somewhere below the missing confidence and the prednisolone-addled desire to run away, is that old part of me that simply wants to put on a good show. It’s an auto pilot. I turn it on. There’s two of me out here now. The one that wants to lie down and the other one doing the reading. The one doing the reading is in charge.

I do it. Maybe I don’t tell many jokes and I certainly don’t try anything new. I keep it short. I stick to my set list. I manage to stay on my feet. Then I finish. There’s applause. Life is still possible. We go outside, all three readers, for the obligatory photograph. Smile into the sun. Done it prednisolone. Done it.

In the photo at the head of this posting that me on the left, Amanda Rackstraw centre and Sian Preece right. Photo by Sue Ashwell.

Down, Down, Down

Now at home, sitting in the study, it’s all very different. The Polymyalgia, the PMR, might be in retreat but in its stead hang the dark clouds of prednisolone. I’d been warned. Like the market things can go up and they can also go down. Past achievement is no indicator of future performance. Depression. Have I been here before?

For those who’ve never sat under such dismal skies the word depression no doubt suggests feelings of mild discomfort, of vague unhappiness, of dissatisfaction with the way things currently are. You’ll be okay. Just shake yourself. Get up and face the world. Get out and have a breath of fresh air. Come on. You can do it.

The reality is different. You can’t. As anxiety gives way to caves of dark the head, that part of it that carries conscious thought, seems to switch itself off. The fog arrives. The mind slows beneath its blanket of desperation. The author Horatio Clare quotes Gerard Manley Hopkins as describing just how this is: “I wake and feel the fell of dark not day.” That too is how it is for me.

The blanket wont lift. Dark fallen on it. It lies.

Your friends, your loved-ones, and those around you all say they understand. But they don’t. They really can’t. Unless they are there with you, in the midst of the somnambulant and unmoving smog, where sparks don’t light and nothing sounds.

Back at the doctor’s the GP suggests that my own basic underlying anxiety about Polymyalgia and what I’m going through may be contributing as much as the Prednisolone chemicals themselves. She might be right. It matters little. The fog is still real and the blankets don’t change.

I return home and write some of the most dismal poems I’ve ever managed. Will I put any of these in my next collection? Will there be a next collection? Doubt on both counts.

But there is a part of me, somewhere above the dreary layers, that’s taking note. And that’s a good sign. I work out that the depressions rarely arrive arbitrarily during the day. They are either there when I wake or they are not. And often by the time we’ve moved on to the day following they’ve gone It’s also possible to get the blanket to lift, just a little, by going out there into the bright world and walking vigorously about. I take to cycling the three miles to the top of Roath Park Lake and back, to walking at speed round Waterloo Gardens, and, once, to putting my running shoes on and jogging slowly along the lane. Not a brilliant success, that. Too early in the process. But other and milder forms of exercise seem to work. Just a bit.

Listen to your body is the standard advice. I’ve listened to mine and right now it’s not saying much.

But as the Prednisolone dose tapers the incidence of depression should reduce. That’s the hope.

Taking the Tablets

When I get the bag of drugs home and lay them all out on the table I am overwhelmed. There are so many of the things. The brown tubs of Calcichew, the smart bright white boxes of Dr Reddy’s Omeprazole, and the small pink and orange op art boxes of Alendronic Acid, marked for ‘oral use’ in case you thought you might have to rub them in. But by far the largest in number are the toppling piles of Prednisolone, box after box. These are white splashed with green and blue, Damian Hurst could have designed them, maybe he did.

Inside are the detailed instructions. Package Leaflet: Information for the User. The small print. And just like that on an insurance policy, it covers every eventuality in the fullest of detail employing the smallest of print. No one is going to sue these drug companies for not giving out comprehensive and magnificently detailed information on just about every aspect of their product bar none. The leaflets even show where the drugs are made. The Prednisolone come from Eastbourne, where the Nazis would have landed had they come.

I have to take Prednisolone at the rate of 40 mgs daily, in the morning, and after eating. This means eight tablets. I push them out of the bubble wrap and swallow the first set immediately, just as I’d been instructed. It’s 10.50 am. Am I going to feel elated, nauseous, faint, spin headed, or pain free? It’s that latter thing I need so badly. Something, anything, to get these pulsing PMR spasms from out of my arms and out of my legs.

But there’s nothing. Not immediately anyway. But by the end of the evening, touch wood, throw salt over my shoulder, whisper it, the pains do seem be lessening. But they can’t be. Not that swiftly. Yet they are. I get my first night’s sleep in ages that doesn’t depend on big bomber pain killers and have in attendance inside my head the swirling fog.

By day three I guess the PMR has reduced from 100% active to something less than 10%. There are still trickles of pain, now and again. But nothing constant. And sleep comes so easy, it’s wonderful. Can this be the cure? Am I imagining it? I keep sending my mind down my legs and round my arms to check. Anything happening? Has it gone? Will it come back?

But it doesn’t return. In fact the trickles of PMR discomfort themselves start to retreat. As the days pass a certainty grows that PMR is fading. Everything is weak still, I find it hard to lift things and to crouch and squat. But the pain has gone or just about. Prednisolone, right now I love you. What else can I say? But steroids and especially this one are two-edged swords. As I’ll find.

Maybe I should check the detailed package leaflets next.