Prednisolone is at last and forever in the backseat. New joys arrive to take that wonder drug's place.
Check urologyforreal.blogspot.co.uk to keep up
Adventures In Prednisolone
- Peter Finch's struggles with polymyalgia and the dark dark wonder drug prednisolone
Tuesday 15 September 2015
Wednesday 29 July 2015
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
SSSU: Short Stay Surgical Unit
Wednesday 7 January 2015
Cardiff and the Vale Health Care as an Episode of Jules Holland’s Hootenanny
Down at the practice the usual hootenanny is in
progress. The waiting room is full. There are queues from those nationalities who
do queuing and great seething mauls
among those who don’t. It’s hard to tell
if this is an international airport waiting lounge or a doctor’s surgery. Only the lack of plush carpeting and stores
selling luxury goods gives it away.
There are people here who are not registered, don’t know how to get
registered or who do not understand the concept of registration and imagine
swaying about in front of the reception counter will suffice. Many have language issues and get by with
hand signals. Some shout. Others have brought along younger family
members better at english than they are to try to help.
In a line in front of the glass window are three aged, baggily
oversized pensioners, huddled in coats and scarves and wanting urgently to get
in there to present their back pains, swollen feet and chest aches. The
receptionist points to a flat TV screen on a side wall and yells something
along the lines of “it’s over there, say you are here on the screen” to which
she gets the uniform response of “doan work” and the shaking of pensioner heads. I
check it out. Press. Enter your date of birth. As if by magic the system knows who you
are. “Welcome Peter Finch. Your appointment is with Dr Williams at
10.45, You will be seen at 10.46.” It’s 10.40, 6 mins to wait. I go stand at the far side among a gaggle of
screaming children and mothers who are bent on covering the entire floor
surface with toys, prams, wet wipes, blankets and other child clinic attending paraphernalia. I am seen at 11.22.
But I am seen.
Inside it’s slick.
There are machines that measure my pulse, and blood pressure. Screens that show my entire medical history
including MRI scans, X Rays and attendances at hospital clinics. The room is bright lit. Diagnosis is swift
and thorough. Smoking is forbidden. A sign tells me this. It is forbidden outside in the waiting area
too. Cardiff and the Vale Health have a
policy against. They train staff on how
to use appropriate body language when approaching recalcitrant smokers. They don’t actually impose fines or take the
lit fags off you. Instead they offer you
give it up leaflets and tell you where you can attend the nearest quit smoking
clinic.
At UHW Heath Hospital right next to the large sign which
announces that this is a smoke free zone, just where the smokers in bathrobes
and angel gowns usually cluster, they have now positioned a tabard-wearing
smoking warden. The one I saw last week
was reading a newspaper. Just round the
corner from him was an old woman in a wheel chair going full at it with a king
size Lambert and Butler
When I was young and the family doctor held his surgery in a
cramped room half way along Albany Road next to where the Fish Bar currently
stands everyone smoked. In winter you’d
enter the icy room heated with a single bar electric fire and lit with a 60
watt bulb to find lines of the aged huddled in their greatcoats all smoking
furiously. There’d be copies of the
Daily Sketch and last week’s Sunday Pictorial lying about among the fag butts. The air would be dense enough to hold in your
gloved hands.
When you got there, facing the actual doctor, smoking was
not allowed. Drinking, however, appeared
to be. The doctor kept a bottle on his
bookshelf badly hidden behind and edition of Grey’s Anatomy. My mother said she was disgusted. He always smells of drink, she’d complain. But still we kept going. The cure for whatever was wrong with me at
the time was always the same. Either a
tonic, a large NHS bottle of fishy-tasting cure all, one large spoonful to be
taken daily, or an ear syringing. This
was carried out with warm(ish) water and a steel bowl held near the bottom of
your ear. You went back out in the
winter cold for 30 seconds a new person after
which the side of your face froze.
More effective, it turned out, than today’s cures. Today I get words of concern and
antibiotics. Out in the street the rain
is coming down like burst water tanks.
Passing cars are like speedboats.
I sail home. Despite the
privations, lack of computer records and the tobacco I’m sure the past was
easier. But then people of my age always
say that.
Tuesday 8 July 2014
The Darkness Returns
In the emergency dental clinic the air con is on sub-arctic
high. Patients clutch coats to their throats. Those with phones, which is almost everyone, sit
bent into their tiny screens. The bloke next to me is in deep conversation
with his solicitor. “Tell her no, I’m
not paying anything extra”. The wall-mounted patient’s television set to
channels the staff prefer shows a programme about house buying in
Andalusia. A blonde couple are rejecting
the polished marble floor of a magnificent and sun-filled villa as being not
what they were expecting. “If I were
here I’d have pale wood and scattered rugs,” says the blonde woman through red
lips half obscured by cascading blonde hair.
Her blue-eyed vacant looking blonde husband nods his blonde head.
My name is called, pretty quickly I thought, and I’m ushered into a side clinic. Here I am introduced to the three students on
call today. They spend half an hour taking my medical
history during which I list prednisolone as something I once took but now,
facing a wonderful side-effectless future, don’t. The
chair is reclined and they commence the examination. Somehow the lamp won’t turn on and then no
one can find any dental instruments. The
student dental nurse watches with interest.
She can’t find any instruments either.
The eventual diagnosis is that my heavily crowned upper teeth have worn
the enamel from their lower brothers.
The underlying dentine has become revealed and is allowing access to the
nerve-filled pulp below. Pain when I eat. Pain when I breathe. The easy fix is a layer of laminate. Won’t take long. But they can’t find the mixture. Then can’t find any instruments with which to
apply it. Drawers are opened. And closed.
One of the group is sent off to consult with their qualified
supervisor. There is a discussion, door
opening, cupboard hunting and finally the sound of a packet being opened and
something being mixed.
I slumber, drop within myself, stretched out as I am in the
sort of position I imagine astronauts would use when setting off for Mars. Deep in my lower back, down where the synovial
cyst slumbers I sense something shift. A
vague glimmer of pain. A portent. I ignore.
I shouldn’t.
The following day the whole raft of symptoms I’d forgotten through
these many PMR-free months return.
Proximate muscles are stiff.
There are aches in my hips, my thighs.
It’s hard, almost impossible, to bend down. And if I do get down then it’s equally as
impossible to get back up. This is a
polymyalgia relapse. A spike. A regression.
A return.
After a few days of failing to recognise what is actually
happening I eventually hunt out my supply of unused prednisolone. This is stored in a shoe box, unused packets unreturned to the pharmacy and
thank god for that. I take 5 mg and then
several hours later try another 5. Before bed I swallow another. Or do I?
I’m suddenly not sure how many I have taken. Fear of polymyalgia fog. I call the rheumatology help-line where a
recorded voice tells me that they’ll return my call between 1.00 and 5.00
pm. Today. They do.
In discussion with the nurse who certainly puts the time in
talking to me we eliminate the cyst acting up and settle for PMR as the lightly
cause. Relapse is common. I take 15 mg pred in one swallow. I’ll be called in for a consultation. Don’t worry.
Try not to. Ah prednisolone, the
wonder drug, would I be worried about you?
My faithful, mind churning, twisted friend.
In front of me stretch months of pharmacy calls, pill
swallowing, tests, waiting rooms, consultations, discussions, hunting of the
internet for answers, fumbling with the Heath hospital car park pay machines, careful
record keeping, nose bleeds, wretchedness, infections, weight gain, weirdness
and worry studded sleep.
In the lounge stretch
out on the sofa and stare a bit at the wall.
Then I turn on the TV. On the
screen they are describing a Spanish villa’s open-plan living area. The polished marble is a strong selling
point. Apparently. I change channels and get a day-time rerun of
some DIY programme where builders rush to fix a disadvantaged person’s accommodation
in time for their birthday. They are installing a pale wood floor. It’ll have rugs scattered over it, the smiley-voiced
presenter assures us. The world is full
of circles.
Friday 11 April 2014
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.
Thursday 20 February 2014
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
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.
Wednesday 22 January 2014
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.
Subscribe to:
Posts (Atom)