Thursday, 21 September 2023

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

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