I need a consult

I need a consult.  Is dying such a bad option?  We all know that each of us will die.  We are all resolutely set, striding towards our death, and yet we never talk about it.  This silence is a sign of strength in our culture, of our desire for life and our determination to save it at any price.  Is this something noble and brave?  Are we railing against the dying of the light? Or is it crass and cowardly?

I should be going to the hospital today.   Eventually I made that much out, but I can’t fully understand the papers they sent me.  They’re in Finnish.  They arrived yesterday afternoon, posted the day before.  I thought the pages at the back were to do with blood tests but, thanks to Google, I found they were an appointment for cystoscopy, and a smear.  I realised they were a summons, for the next morning, today, this morning, and it’s 6am.  I’ve been awake over an hour.  I went to bed at 2am.  I don’t think I’m going.

As the shock of realising the cystoscopy was for the next morning subdued, I had continued typing in other searches.  At first I wanted to find out what to expect.  How painful would it be?  The urologist said I wouldn’t feel a thing under the local anaesthetic, but doctors lie, and it turned out this doctor was no exception.  I’ve always been good at research, and I’ve only got better over the years.  You get a nose for it, the gut feels and hunches of a detective.  You find you quickly sort the wheat from the chaff, recognising where the information you’re looking for will be and where it isn’t.  Every word seems to focus your search.  I found a paper on the pain at http://content.karger.com/ProdukteDB/produkte.asp?Doi=92051.  Oddly one of the authors lives in Seaford, just around the corner to my mum’s old house, and another is based at a hospital in London which I was responsible for building.

Theirs is an elegantly simple paper.  Men undergoing cystoscopy were asked to squeeze a pressure-sensing rubber bulb in proportion to the amount of discomfort experienced.  The results were clear.  I looked up the anatomical terms there on cut-away drawings of the male urinary system and began putting two and two together.  Medicine isn’t rocket science or quantum mechanics.  It seems more a question of logic than biology, the same logic I confronted the professor with in order to spare my mother futile indignity and pain in her final days in hospital.

“That is not the way we usually do things,” the Director of Medicine had said “but I can understand your point.”.

My point was that there was no benefit in my mother having another colonoscopy to take a biopsy.  Half way through the first one, the probe ripped her colon.   When they opened her up in the emergency operating room they found cancer had invaded all the organs in her abdomen.  They didn’t think to take a biopsy, probably because the surgeon saw no point rather than because he was incompetent.  So, my mother was still recovering in hospital from the surgery.  She was 80 years old.  She was not a candidate for chemo.  There was no point in determining the type of cancer.  Simple. Logic.

It seems as though such simple logic is alien to the medical profession.  Perhaps, blinded by their heroic struggle with death, they become blinded to life too.  It is convenient to be disconnected.  Doing their job is made more bearable, more comfortable that way.  We too appear ready to submit to white coated instructions, to the health machine, trudging into our own heroic battle like soldiers.

Ill and dying people are upsetting.  Doctors and nurses become numbed by dealing with it, or the majority of them do.  This morning I thought that figure must be at least 70%.  Only a handful make a human connection, traveling with you awhile.  It has been so odd to find both the medical facilities and the medical cultures in Britain and Finland are identical when otherwise their cultures seem  so far apart.  For three years I accompanied my wife on every visit, on every test and treatment.  I lived in a cot by her side for the two weeks of her dying.  I spent two weeks in the UK in Groundhog day, nursing my mother on the same path.  Her death was easier though.  Her heart was weak.  It is a slippery slope we enter onto when we submit ourselves to the doctors.  Their offer is something more in our imagination than  reality.  The doors close behind us as we pass through and the exits are neither advised nor signposted.  In fact they are hidden and blocked.

My cystoscopy is part of a battery of testing.  Primarily it’s to determine if I have bladder cancer.  There are side effects to the procedure.  I know, I have had painless tubes inserted into me before, and felt the side effects for decades.  Apparently that’s impossible, which has been a comfort!  Medical science only accepts that which fits what is already accepted.

I admit the pain (aka discomfort) of the procedures and their side effects, which will only worsen my experience of my condition, whatever it is, are a hurdle to my attending today.  I am a coward.  But in the end the choice should be one of logic not bravery:  What’s the point?  What’s the “cost/benefit”?  What if something goes wrong?

If they find I have cancer what will they do?  It seems that in the majority of cases, and I’m sure in Finland and the UK more so than in the US, both are treated by removal of the offending organ.   Both would then be followed by chemo it appears.  There may be a strong possibility I would survive, at least for a few years but I haven’t got that far with my research.  At the moment I see the only question as whether I want to be attached to a bag and have no physical capacity for sex for the rest of my life?   Without a prostate less than half of patients report a decent recovery and less than 10% of getting back to where they were http://www.harvardprostateknowledge.org/hematospermia-demystified.  Mostly it depends on the state of your current sex life which puts me at the bottom of that heap.

Yet now I’ve got this far with our consult, I don’t know.  What I do know is that the treatment for cancer is horrible.  It’s debilitating.  It fucks your head up.  And it goes on for months or years.   I was at my wife’s side day and night during those awful years.  There would be nobody there for me, not like that.  There is nobody there.  That’s why I’m writing this here.  That’s why I’m consulting with you.  And what if something goes wrong?   I want a plan, even if I immediately change it, I want a plan.

It really is a beautiful morning.  The sun is shining the sky is blue,  but is dying such a bad option?  In the end it’s just a question of how and when.  I’m going back to sleep!

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~ by haastava on June 21, 2012.

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