The Results Of The Tests #1

I roll back to UHW.  This must be my hundredth visit.  All the clichés are still firmly in place.  The smokers standing next to the smoke free zone notices;  the bins with fags sprawlingly stubbed into their tops;  the signs by the Sports & Social Club advertising a forthcoming beer festival;  ancillaries in fatigues; consultants in suits; the lumbering large blocking the walkways;  the people on sticks; the chairs;  the circular summerhouse, centrepiece of the Millennium Garden, in which I’ve yet to see anyone sit; the out of date photographs of department  heads in the Trust’s glass-fronted notice board; WH Smith’s concession in the concourse with its line of shouty, comprehensively hated self-checkouts; the overflowing coffee shops; the Post Office with its operator still protected by the glass screen rising from his counter.  It’s normal, every part.

The Urology clinic with its two televisions, water dispenser and chairs set out as if it were a theatre is full to overflowing.  Nobody appears to have bothered to dress up for the occasion.  In fact here it is as if Britain has totally abandoned smartness in favour of beachwear, bed wear, jumble-sale outfits, gardening clothes or satin-finished running gear.     They fidget, sprawl, get in each other’s way, lumber back and forth to the drinks dispenser and the toilet, read the contents of their wallets, fiddle with their mobiles, stare into space. 

Samples of urine are handed in at reception by a steadily arriving clientele.  Like me they are here   for a meeting  with the specialist or for some clinic treatment that will assuage their ills.  The flow of arrivals and departures is unending.  The air feels like an airport’s when the flight has been delayed or has just been cancelled.  There’s palpable tension.   

  

I’m called in on time.  I see, it turns out, not the consultant but a smiling locum registrar.  His name is on his door.     As I pass I try to scribble it onto the margin of my newspaper but fail.  I sit and he says it.  “The cancer is still there.” 

Still there?  What do you mean “still”?  I wasn’t aware I had a cancer.  Hell, the previous consultant, now retired, told me back in 2006 that this growth, patch, tumour, papillary dangle, nodule, goujon, or whatever wasn’t “really a cancer at all".  "So long as we keep getting you in and scraping it off when it reoccurs then you’ll be able to go on like this for years”.  Yep, years.   

Clearly those are done now.

“We can offer you,” the locum says with a measured smile, “a treatment called BCG.  This takes six weeks.  We insert it into your bladder.  It’s made in the lab.  It’ll challenge the growths we've found there.”  I’m still stuck on the words “offer you” while this BCG description rushes in high speed detail  around the room.  Hardly any of it actually settles in my head.

In a voice out there in the distance he’s now suggesting to me that an alternative might be to “take the bladder out”.  I grimace.  “People get used it,” he says.  “It’s not so bad”.  There’s a small silence.

“So what do you want to do?”

God, I don’t know.  Have no pain.  Stay alive.

I opt for the BCG.  Who wouldn’t.  Five minutes later I’m outside again waiting to see the specialist nurse who’ll brief me on what’s next.  There’s someone else in with the locum now, getting their news.  Hearing it in that hot little space just below where the stomach might be.   

The Bladder (Slight Fault) #2

Seeing blood when you pee is a sign it’s not right.  Happened to me in 2003 while I was visiting Syracuse, NY.  Fear and panic in a small American john.  I went to the ER where they said I shouldn’t worry and gave me a prescription  for antibiotics.  Should settle it in ten days, but they didn’t. 

By the time I reached South Carolina I was back in the ER.  This time the nurse,  brandishing a sample of my urine that looked more like a lava lamp than the crystal clear it should,  told me “you’re a keeper”.  Scans, tests, and the whole razzmatazz rolled until a middle-aged Doc advised, in his southern cowboy drawl, that I should enjoy the rest of my holiday and not to worry.  But be sure I see a urologist when I return home.     

But you can’t, can you, enjoy your time with such a great, howling fear up ahead. 

I looked it up on the net.  Blood in urine.  All the US sites told me that the Surgeon General advises seeing a urologist immediately, waste no time, this could be serious.   The British, in contrast, suggest going slow, taking an aspirin, and only if that doesn’t help actually visiting your GP. 

I rang her on landing and next thing I knew I was attending  Ambulatory Care for a flexible cystoscopy.  Ambulatory Care.  They’ve renamed it since as ambulating doesn’t appear in most punters’ vocabularies.  It’s called the Short Stay Surgical Unit now.  Trips off the tongue, doesn’t it. 

The flexible camera discovered a papillary growth.   We’ll need to take that out, the consultant told me.  I was readmitted for an encounter with flexible’s big brother rigid.  This was a little like having Dyno-Rod round to fix the house drains although, being under general anaesthetic, you experienced little. 

The fun started when you came round.  Fog, fuzz, thick head, the catheter still in and aching, mitomycin chemo wash like a bag of nails and then, following the drinking of gallons of water, successfully peeing again and being allowed home. 

In the consultant’s office a few weeks later  he told me that this papillary growth was a cancer of the lowest grade, the lowest, non-invasive level, and so insignificant (in the scale of things) that it wasn’t really worth considering it a cancer at all.  We’ll need to check you regularly and, if we find anything, just scrape it off.  These things return in at least 80% of cases.  Don’t worry.  You’ll last.

And I have done, too.  Nineteen cystoscopies later with several episodes of burning the recurrence off there and then plus at least three more full-blown rigid cystoscopies I’ve managed to navigate thirteen years of superficiality.  Mostly without pain or fear.  The general anaesthetic always whaps me but I manage that.  With the flexible insertions I simply wiggle my toes and don’t look. 

But that’s changed.  Slight Return has now morphed to Full On Big Return.  G1 (the grade applied to my old friend the almost not a cancer growth) has become G3.  G2 never happened, at least if it did I wasn’t told. 

Things The Doctor With My Results In Front Of Him Could Have Said:

Mr Finch, Things have changed.

Cancers are tricky things.

How long have you been coming here?

Now I don’t want you to worry too much.

As this is sounding complicated I’ll write it down.

You’ve got choices and you need to spend some time considering them.

This is a whole new ballgame.

Survival rates are good.  Here are the statistics.

This Urology Department has some of the leading specialists in the country.

We can cure this so long as we prevent it from spreading.

This is just one of those things life throws at you.

Have a good day.

I watched him in action again  two weeks later when I was back to see the specialist nurse for the start of my treatment.  He ushered a middle-aged man in a suit into his small office, all smiles and handshakes.  The guy spent twenty minutes inside before remerging pale and red-eyed and with that haggard-look you only get when your own mortality confronts you.  I know how you feel, I thought.  The miasma of disbelief.     Then my name was called and I carried on.

BCG - The First Instillation #3

Like plants all drugs have multiple names.  A pharmaceutical name, a user name, a marketing name, and then maybe some other easy to pronounce handle used by medical staff.   Here’s the run for BCG, formally Bacillus Calmette-Guerin but no one ever calls it that: TheraCys, TICE, Vaccin Bilié de Calmette et Guérin, Pacis BCG, Glaxo 1077 or in NHS Wales’ case – Oncotice. 

In the clinic office they are loading me with data.  Booklets, guides, leaflets.  Advice reaches me in a torrent.  I’m sat in the practise nurse’s side room, locked door, desk, files, couch, screens, cabinets containing Dr Caligari’s secrets.  The deal seems to be that BCG  might work.  They put this stuff into your bladder.  A more than 50% success rate is quoted which means that more than 40% fail.  A bit like spinning a coin I guess. 

Lying on the couch the nurse empties my bladder with a catheter and then fills me with 50 ml of the virulent stuff.  BCG is a form of TB, “created in the lab” as Dr Montezuma put it.  “You could catch TB from it but people don’t.” The idea is that it will infect the inside of the bladder kicking the body’s own immune system into high gear.  In this state the hope is that the cancer will get knocked to hell.   You have a future then of maintenance doses and BCG and a fair amount of cystoscopy checking but it’s a future.   

According the all the US information web sites (and there are dozens of these) patients who have had BCG inserted should now put a peg over the ends of their willies and roll about for several hours.  There’s a sequence of moves and diversions that involve shifting position every 15 minutes.  This will ensure, the sites assure me, that every part of the bladder’s oh so pink lining comes into contact with Calmette Guerin’s wondrous creation. The bladder will react and become angry. It’ll bleed and debris will be released.   Infection will be total. 

“That’s what we need,” the nurse tells me.  “The angrier the better.  But we don’t do all that lying around anymore.  Take a walk down to the concourse  and come back in two hours.  So long as you pee it all out in the special toilet we have here you can then go home.” 

There’s absolutely no sensation at all to having BCG inside you.  There wasn’t that much in having the catheter inserted and then withdrawn either.  The only discomfort is having to sit in place where almost everyone is drinking coffee and not be able to join in.  No liquids for two hours before insertion and none for the two hours that follow either.

When time’s done and the pee disposed of I go home.  I drink tea and then more tea.  The advice is to drink as much as possible for the next 48 hours to get the BCG out of your system.   I’ve been given a list of expected side effects as long as your arm.  I hardly experience any.  A bit of tiredness, some head fog.  Beyond that it’s life pretty much as normal.   

BCG insertions are done six times initially, weekly and then there’s a gap.  This is followed by a further rigid cystoscopy and the taking of more samples from the inside of the bladder to be tested in the lab.  Should be a piece of cake.  But something there in the back of my head tells me that, given the way of medical things, maybe it won’t be. 

In my study I put on my new compilation from the Bill Black Combo.  He was the man who led the band backing Elvis for all those early and wondrous Sun rock and roll smashes.  Without the front singer the band sound limp, historically perfect but tame.  In the early sixties, riding the wave, Black formed five versions of his rocking combo and sent them all out on the road simultaneously.  Make hay while the sun shines.   I should learn from this.   Do it now.   According to what I’ve read BCG instillation #2 is a tougher beast to deal with.  We shall see.  

BCG - the Series Progresses #4

I hunt around the web looking to see if there are other data nerds out there like me.  And there are.  People who have recorded every detail possible about their BCG experiences.  They have written essays, compiled spreadsheets, and produced flow diagrams.  These are minute by minute bulletins from the front line of experience.  They speak of carcinoma in situ, grades, initiation, maintenance, debris,  blocking triggers, cells, protocols and voids.  Voids.  It sounds like space travel with air locks that open to rush their entire content into the emptiness beyond.  If only peeing post-BCG was actually like that.  Total void is impossible.  There’s always something there.

I scratch my notes in a pad I’ve positioned outside my designated bathroom, the one I’ve been advised to equip with extra towels, rolls of tissue, wet wipes and gallons of bleach.  I scribble “12.02 little liquid but can’t finish”, “12.10 try again”, “12.15 cloudy, much pain”.  On the same page are some of the notes I made on my recent Glasgow visit to see the ebullient author Ian Spring.  Ian is writing Real Glasgow for the series of books I edit.  I met him on George Street, striding, newspaper under his arm, shades in place, beaming a “how are you?”  I couldn’t bring myself to tell him what was up ahead.

The repeat BCG instillations are over in a flash.  I keep up my long term tried and trusted method for reducing anxiety here.  I don’t look.    You are allowed to go home immediately, “so long as you pee the stuff out again after two hours.”  Keeping it in for longer won’t get you there more swiftly nor improve the treatment’s efficacy.  “I had one patient who got on the train to Scotland immediately after his instillation,” the nurse tells me. “We don’t advise things like that.”

I’m driven back.  The safe familiar world of home continues.  Why would it not?   The prescribed two hours of holding it all in pass slowly and then like all hours they are suddenly up.  I void the liquid.  50 ml.  Less than a bottle of tonic but it felt like a pint.  Everyone’s instillation experiences are different, it seems.  Some feel nothing, others take to their beds for the duration.  I’m somewhere in between. 

The sense of unwellness ramps up steadily.  It is joined by vague flu-like sensations, a head filled with otherness, an inability to concentrate, an increasing tiredness, aches.  Voiding is appalling, pain, inability, more pain, streaks of blood and minor debris, further pain, inability to start properly, inability to finish and once stopped an immediate sensation that it’s time to start again. 

I get a chair moved into the bathroom but end up not sitting in it.  I spend the next four or five hours in a reeling haze.  I drink as much as possible, tea and more tea, hot water, cold water and then tea again.  Slowly, ever so slowly, the gaps between voids widen.  But the head stays full of fog.

At 9.00 pm I knock myself out with super strength co-codamol but still manage to visit the toilet around 8 times as the night progresses.  Dawn is all weakness and exhaustion.  The fatigue of it all presses over me like a cloth.

It takes 48 hours for the worst to pass.  Sensation, inability, stinging and a massive sense of can’t be bothered, however, hang on virtually until it’s time to go back in for the next weekly session.   We do it and the wheel goes round again.

I can’t say that things get easier nor really that much worse as the sequence progresses.  Other than the fatigue which comes at me regularly out of left field and makes me sit down on house walls, park benches, cafes, anywhere.

I haven’t totally wasted my time though.  I have learned the location of every accessible toilet within a five mile radius of the house.  I can plan a walk that rocks between bush and public convenience and friendly café.  Just about do-able post-BCG,  on day three anyway.    I’m thinking of having a t-shirt sloganed with the words God I need a pee just in case.

I’m up to instillation #5 now.  One more in this set to go.  The darkness will then lift.   Will it?  I’ll let you know.

If only the world was like this

Six Down #5

It’s five weeks now since the 6^th instillation.  The burning wail as you pee has almost gone.  So, too, has the urgency, for the most part.    That high speed rush to the toilet only to be disappointed on getting there by the peeing  of just about enough to fill an egg cup.  That’s mostly stopped happening.  What’s left is draining tiredness accompanied by a cold that won’t really start and won’t really go. 

So how was your BCG experience Mr Finch?  Well, you don’t die.  And you can still mostly go to sleep at nights but it’s not something you’d wish on your friends.   My next step is going to be the biopsy.  This is a scraping of the inside of the bladder done via inflexible cystoscopy and under general anaesthetic.  The scrapings will show if the BCG has worked.  Has it held the cancer back?  Has it reduced its intensity?  Or are the multiplying abnormal cells still the same, or worse, on the rise.

Given the importance of this test result the Welsh NHS are surprisingly casual about letting me know how and when it will be delivered.  “Two weeks or maybe three,” says the nurse.  “If you haven’t heard then give me a ring.  I’ll do some chasing.”  Hell’s teeth,  I want to know immediately I come round in that recovery room full of people in robes and masks  asking me if I’m alright.  You want me to tell you if I’m alright?  It should be the other way around.

But there you go.  Human bodies are not computers where a swift scan by AVG would immediately identify the Trojan horse Sub epithelial Connective T1.  Humans need to have their samples examined by the lab and the results evaluated by a qualified person before prognosis is offered. 

I zoom into the Urology clinic in order to leave with them a requested urine sample.  This is “to be given at the clinic” in order that they may test for residual BCG delivered infections.  It’s about the fastest in and out of the hospital I’ve ever managed.  Into Clinic #18, enter  toilet, pee into bottle, deliver bottle to nurse at reception desk, then back out again to the car.  Ten minutes tops.  If only all appointments could be as swift as this.

the sample bottle

On my previous visit the turnaround was nearer two hours.  Wait, finish the book you have with you (in my case The Life Of Pee by Sally Magnusson “The story of how urine got everywhere” - David Bowie refrigerated it to ward off evil, apparently,  and there were even containers of it left on the moon) and then a scour of the notice board displays which mostly detail support groups for variations of bladder issues you don’t have and, then,  finally count the number of cracks in the tile flooring. 

To be fair my appointment was delayed to allow for bad news to be imparted to another blameless soul who’d drawn a straw far shorter than mine.  I saw him leave, grim faced, hunched, so slow walking. 

My final instillation was no better nor worse than the 3^rd, the 4^th or the 5^th.  But all that’s deferred now, shoved forward into the future.  I’m actually in the position of wanting more of it.  If the cancer is responding then you get what’s called a maintenance dose of three instillations followed by several months off , another cystoscopy and then, all being well, more.  BCG, my old friend, if my luck holds I’ll be getting to know you well.

Biopsy #6

I’m in anteroom, the one just outside the operating theatre.  I’m flat out, trollied, cannula in my wrist, oxygen mask on my face, chest stuck with ECG pads, and wearing an angel gown.  It’s cold, the land of anticipation always is.  They are talking above me,  making the day sound the jolliest in the world.   We’re just giving you something to breathe, says the anaesthetist  and then I’m gone.

In  post-op, a nanosecond later,  I’m wrapped in warm air.  There’s a voice saying something about it taking time getting my temperature up.  There is light.  Everything out of focus, double, moving about.  I try to probe where I’ve been.  There’s no substance,  no experience, no sensation.  I know time has shifted but I have no idea by how much.  Could be minutes, could be days.  There’s a sense of stretched out space having been filled with something outside my comprehension.  It’s a wavering perception that’s gone almost as soon as it arrives.  Here Ginsberg would have met with angels and Kerouac would have seen  the sparking fractured light pouring from the diamond sutra.  This is the place of white corridors and great lights, of peace and gladness, of cocooned protection, the cessation of time and the end to all fears. 

The warm air is arriving via a tube attached to the bottom of whatever it is that covering me.  Hospital staff in gowns float by, tending, manipulating, checking monitors, watching my temperature as it slowly goes up.  You written a book, haven’t you?, asks someone in a gown.  I nod.  Are you going to write about all this?  I smile.  Sure, just give me time.

I get a visit from the scrubs-wearing surgeon.  In and gone in minutes, another face above me.   It looks good, he tells me.  But the lab will decide.  He’s taken samples from the cancer growth sites, rich cystitis red from being blasted by six weeks of BCG, angry and still letting me know.  It’ll take about a fortnight.  How do you want to proceed?  Shall I call you or do you want to come in?  Both, I tell him. Both.

Back in the recovery ward they give me toast and tea.  I realise that haven’t eaten anything for almost 24 hours. Around me are others recovering from their tribulations.  Men flat out, wired to monitors, hoses snaking fluids from their wounds to bags on carry-frames set under their beds.  Tubes delivering blood.  Bleeping lights on screens.

 

I realise then, and with considerable joy,  that I have no catheter installed.  A nurse checks my blood pressure and takes my temperature again.  You’re doing fine, she says.  Temp is normal.  You can go once you’ve peed.  You know the routine.  She puts a grey compressed cardboard  urine bottle (male)  onto my bedside table.  Use this. Ah yes, I know these things of old.

I find the water jug, there behind the tissues,  and drink its contents.  I wait ten minutes then head for the lav.  It’s like a gusher this time, all hesitation forgotten.  Pain, if there is any, is a pale ghost and the world is not swirling.  I can stand without leaning against anything.  I’m in charge.   I fill the receptacle and proudly deliver it to the nurse’s station.  You need 100 ml from me before I can leave, right?  I say.  Well here’s a gallon.

 

Back home I score the process, on a scale 1 to 10 where 1 is awful and 10 is great:

Pre-op wait - 3    (last on list)

food  -  2     (toast tasted like cardboard)

Care and attention - 8     (you alright, there’s a love)

Time taken to recover - 1     (GA  always hit me hard, probably my fault more than theirs)                   

Surgery - 10  (the tumultuous joy of having no catheter and that hint from the surgeon that it's looking good)

Would you use this hospital again?  - Yes, I would.

fill me quick

  

Results #7

It’s about a fortnight further down the line and here I am at the local surgery with my GP asking about the annual flu vaccination.  Last year when the wrong kind of flu arrived  the immunization failed totally for around 99% of those receiving it.  Should I bother again?   It turns out that there’s a conflict with BCG treatment so I can’t have it anyway.  The GP is staring at her screen. It’s full of Finch data.  Look, your hospital biopsy result is in.  It’s just been posted   Do you want to know what it says?  I go cold.  The doc’s surgery computer in downtown Roath now connects directly with Welsh NHS’s mega all-Wales database.   The truth is no longer just out there.  It’s also in here. 

I start to tremble.  I need to know.  But I don’t want to know.   But she’s smiling so I nod.  Check for yourself, she says.  I look over her shoulder and to decipher something intelligible from the dense slab of medical verbiage and then I see it.   No sign of malignancy.  There’s inflammation and you’d expect that.   But the sample they took has been analysed and it’s clear.  I don’t know whether to dance or cry.  She tells me, beaming, that I can go out now and celebrate.    You should.  Rock and roll.  Yes.

The routine now is maintenance BCG.  Three doses, each a week apart,  and then three months later a cystoscopy to check for results.  Word on the street (on the bladder cancer website actually) is that maintenance doses are harder to tolerate than earlier instillations. But I’ll cope.

I walk in.  It’s a two mile ramble through the leafy suburbs.  Past houses with double garages.  A semi  with a Gilbern rusting slowly in the drive.  Along a street where almost everyone seems to be a taxi driver.  Down the hill by the shop where signs in the window warn sternly against school children coming in in groups of more than two and absolutely forbid anyone entering wearing a hoodie.  In the park there are dog walkers.  The stream and its weeping willows. Roses in long profusion. 

one of these

In the clinic the specialist nurse uses a long thin catheter to insert BCG dose.  As usual I don’t watch.  She wears a face mask, Ebola style protective apron and elbow reach rubber gloves.  You’ll be okay, she tells me.  Maintenance patients usually are.  It’ll probably be a bit worse next time.  But you know the routine.  Drink as much as you can.  Take painkillers.  Spend time in bed.  I will.

I get a lift back home and sit there waiting for the time to click on.  Nothing to drink for a full two hours between instillation and first void.   The BCG needs undiluted time to work.  Tea hovers in the future.  When eventually I pee there’s little sensation.   There’s a moment of total calm, a bit like the zen point of nothing where the out breath and the in breath meet.   And then it starts: the fog and the growling discomfort and the  wonderful,  horrible process of salvation all over again.   

Maintaining The Structure – BCG Instillation Maintenance Regime #8

This is all as easy as walking down the road.  I know the form.  I’ve done eight of these already.  Visit the clinic, deliver a urine sample, suffer a BCG instillation via catheter, go back home and sit about for two hours while the obnoxious fluid does it work.  Follow this up by voiding (to use term lifted from the patient help leaflets), pour Toilet Duck down the bowl, take a deep breath and then deal with the two days of fog, urgency, flu, joint pain, head pain, and wee pain that inevitably follow.  By day three the symptoms are lifting.  By day seven they’ve gone.

In the UHW concourse which as a bit like a shopping mall with added pyjamas they’ve opened a branch of Tiger.  This is a Danish retail operation which slices off the frivolous end of Ikea and mixes it with the sort of things offered as prizes in fairgrounds.  Stuffed pandas.  Fake roses in ceramic pots.  Plastic goldfish.  Merchandise glitters in primary colours.  Prices are well inside Poundland extremes. At the till service is delivered by a woman dressed as a princess. 

From my vantage point in the central seating area I watch dressing gown clad customers queue to buy mirrors with ears, biros done up as quills, spectacles with wiper blades,  callus removers, giant yellow ducks, pussy cat door stops, gonks and humorous illuminating balaclavas.  What they do with this stuff  on the ward I’ll never know.

Back home my ninth instillation – the final of the three maintenance doses – does its predicable stuff.  I feel fine then I don't.  I experience flu but run no temperature. My joints ache.   I spend hours in the bathroom.  Bathroom bathroom. Bathroom you are my universe.  Bathroom my old friend.  I know every tile you own. 

Days pass.   BCG reactions lift.  I’m left with fog in rolling sheets and urgency, slowly reducing.  Urgency.  I should put a word in here about just what that means.  Those who have never experienced it simply don’t know.  This is more than simply a desire to pee and to pee often.  It’s a ball of prickly, screeching pain that sits down deep inside your bladder.  Hiding there it’s untouchable.  You can’t scratch it or poke it or rub cream on it.  You drink endless cups of water and it makes little difference.  It’s made of glass paper.  It has spikes like a metal horse chestnut.  It revolves, it pulses, it ripples, it howls and it hollers. It has you there above the toilet bowl pleading to the deity for salvation.  Plead and scream.  Do so for hours on end. 

I used to say that the only time anything ever felt any good in life was in the first ten minutes after I'd completed writing a new piece and just before doubt and worry inevitably set in.  Was it any good?  Could I do it again?  Was my entire life up to this point a fluke and now hard cold reality was about to begin?  Post BCG urgency is a bit like that.  The only place where the pain can’t reach is that small slice of time just after you’ve leapt through the pain barrier to start peeing and that spot where the peeing finishes and the post-pee pulsing pain begins all over again.

I go to the pub.  I’m not 100% but then at my age I very rarely am.  If it’s a toss-up between being okay and being not then err on the side of the former.  Everything is fine. I have a pint of cider and a chat.  The world once again turns.

But a day or so later with a vengeance it restarts.  BCG you haven’t gone.  BCG here you are again.  It begins with a steadily increasing, permanent,  long,  and bawling pain;  a thing of spikes and screws, of thorns and broken glass.  It is filled with electricity, thick with acid, rich in unrelenting misery and copious mind-numbing ache.

It’s hard to pinpoint but it's there, somewhere,  deep inside  the bladder.  This is BCG cystitis.  The complaint that officially seems not to exist.  “It’ll pass.  It’ll take time.  Just wait.” It is totally debilitating.  You deal with by avoiding alcohol, caffeine, acid fizz, citrus and tomatoes.  You take pain killers.  You lie down.  You hope.

I’ve done two solid weeks now and it is still roaring.  Return visits to Urology and my GP and Urology again have harvested a mounting pile of naproxen, co-codamol, super-size ibuprofen, urinary tract antibiotics, pills that shrink the prostate and pills that relax the bladder.  Life is industrial strength fog. 

So,  if you were going to attend one or other of the run of poetry readings and book promotion events I was about the engage in this bright not yet spring then please accept my apologies.  The Urologist suggests that  BCG reactions usually cease after three weeks.  I’ve a week to go.  I’ll get back on board. All is never totally lost.  Today I am going to attempt to walk to the paper shop.  First trip out in days.  There is one public lavatory down the hill in the library.  I’ll pass that way.  The whole adventure shouldn’t take more than ten minutes.  If you see me I won’t stop.  If I do I’ll have to go. And we can’t have that.

Not Like Your Regular Cystitis #9

This thing I’m presently suffering from has a name.  BCG Cystitis.  But it’s not like your regular cystitis.  There’s no infection to be hit with antibiotics and the stinging doesn’t go when you pour cranberry juice down your throat.  BCG Cystitis’s game plan is to get in there and stay and that it certainly does.  Hunting the web for information on what might be wrong pulls in few results.  Out there among the patient advice sheets and what-to-expect guides issued by health establishments the world over the most you get is tantalizing references to  rare incidence of BCG intolerance but with little detail of what exactly this might consist.  Nobody tells you what to expect.

The Americans are better than we are.  They have larger bladder cancer support chat rooms and a fair number of good souls right across the fifty states who are willing to share their experiences with all-comers.  In answer to my enquiry about whether or not anyone else has gone through this rage of stinging pain and what they’ve used as a palliative pulls in sixteen replies. They suggest drugs.  Some I recognise but most I don’t.  There are ones, apparently, that turn your wee bright green and make your tear drops stain the pillow.  And there are ones that leave you so out of it that you can no longer answer the phone.  Helpful souls suggest hot packs, cold packs, hot baths, seat pads, diets, antacids, lie downs, never lifting anything heavier than a kettle of water,  using medicinal marijuana, hanging on in there, doing your best, sitting it out.  How long does it last for, I ask?  41 months was one response.

In fact this, in essence, was the reply I got five weeks in from the UHW urologist.  There’s nothing that can be done.  You have to sit it out.  It can go on for months. 

I’m given more pain killers, bottles of stuff that neutralize the urine, antidepressants that will relax the bladder but sort of don’t.  I’ve given up alcohol (it’s a diuretic) as well as tea and coffee (them too) plus citrus and tomatoes (they exacerbate the stinging) and try to get by on plain food.  Anything to settle the raging pains.  They come on constantly and shriek and rage like demented beings.  I’m on the floor rolling.  Then I’m in a dark room wishing the world would go away.  Constantly I’m running to the toilet.  28 times in 24 hours.  Life’s pleasures have been considerably reduced. 

On the positive side, though, says the urologist, immunotherapy is supposed to elicit a reaction and your bladder has certainly had one of those.  And that’s a good sign.  The cancer has been challenged.  But has it been beaten?  We shall see.

Back in the day when I was about 9 along with polio, scarlet fever and not having enough money to buy shoes TB was the national curse.  An immunisation programme was instituted across the land.  At school you stood in a queue and got a jab of BCG in the upper arm.  From this rudely delivered imposition grew a scab, nipple like and incredibly sore.  The deal was you didn’t touch it.  Leave it well alone and the BCG would do its work and knock TB from the world.  In the school corridors the bullies stood in line.  As you passed they punched you in the upper arm.  Wham bam and it hurt like hell.  My first encounter with BCG-related excruciation.  Obviously, although I was not to know this at the time, not my last.

Right now I’m measuring my wee in a graded jug.  Between constant cups of hot water I void 100 ml a go some 20 or so times daily.  The average is 350 ml  7 times in 24 hours.  I’ve a way to travel.  BCG Cystitis is chemically induced and responsible for granulations below the bladder surface in the mucin layer.  It has no pattern to its attacks, intermittent, constant, sporadic, it’s all of those.  Weak, medium, intense - mainly the last two.  Predictable – never.  Available palliatives – none.   Tomorrow I’ll see the urologist again and what’ll he say?  Carry on enduring, catheterise, or have the bladder out.  Who knows?

Urology - The Poem

hardly anything hurts here

front of the internet 

finding out where it came from:

personal history,

recurrent urinary tract infection,

external beam radiation,

consumption of aristolochia fangchi, 

infection by parasite,

caffeine, saccharin,

hairdresser, machinist,

printer, painter, trucker,

rubber, chemical, textile,

metal, leather worker,

smoker (greatest risk),

dark tobacco, after that light,

then second hand.

Caucasian,

male over fifty,

worse as you age.

Give up smoke.  Get younger.

Have you brought your dressing gown?  High eighties outside.  I have not.  You’d best wear this.  Hospital tie-at-back shortie blue  angel gown your NHS arse sticks out you can’t go in there with your arse out I don’t care put on these paper pants cover yourself there’s a love.  Cover my arse they won’t.  Edges flapping can’t reach or be bothered.  Goosebumps.  Fear.  You alright, Peter?  You’re next, my love.  You are.  There’s a good boy.

On the screen it’s like miniature DynoRod

hunting my house drains

water running so it slides

headlamp camera scouring plunger

At twenty meters they found a ring-seal loose

have to dig that out.

On the notes when I browse them

while the nurse is out

the sketch looks like a sea anemone

still life: bladder with flower

done in biro

sideways on the urine analysis

Red cells present: too

many to number.

My father died in this building

five floors up from where I am now

sunlight streaming through the glass

nurse with stockings clearly visible 

under her white dress neither 

he nor I bothering 

him pulling hard for breath and me

holding tight his hand.   End game.

But this time, not yet.

I put the gown in the dumper &

the pants in the bin. 

Breathe again.

2003

This poem first appeared in Peter Finch's Zen Cymru published by Seren Books