Sunday, 17 September 2023

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.

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