I need a consult

•June 21, 2012 • Leave a Comment

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!


Death is certain…

•June 7, 2012 • Leave a Comment

Death is certain.  That’s the only thing you know for sure.  If you’re smart enough, or rich enough, or unemployed, you can even avoid taxes.  

You were born and from that moment you began your path to your ultimate goal: being dead.  It seems to me that being dead is no big deal.  It makes no sense to me that in the infinite vastness of the universe or multiverses God would be vindictive.  Vindictiveness is a human thing, not something that even we are proud of.  It’s hardly something to put on your CV.  Surely God, or any god worthy of the term, knows all about me: about my weaknesses, understandings, perceptions, and humanity.  I’m pretty convinced that He’d only really be interested in my humanity.  In my eyes He cannot be less than any loving parent: recognising His child as distinct from its weaknesses and failures.  Anyway, by definition I can’t know anything about any of this so the only thing I can do is live my life, or more accurately manage the journey to my death.   The first part of this journey is easy enough.  It has its ups and downs, maybe more of one than the other, but it is what it is.  As far as I see it’s the last bit that’s the tricky.  

It is this last bit however, our dying, that we pretend doesn’t exist.  In the movies people tend to be pretty coherent during this stage.  Cancer sufferers may lose their hair but they don’t drift in and out of consciousness, they just sleep a lot.  They don’t cry like a baby with the pain that doctors refer to simply as “cancer pain”.  They don’t beg incoherently for more painkillers.  Doctors and nurses never say no, they empathise and listen to the straining attempts to be heard.  They respect and support, humbled by the grim reaper’s approach.  It’s a  picture postcard from a loving idyl.  

I’ve watched people dying, from close up, those who were as close to my heart as it is possible to get, outside of surgery, and those I knew as friends.  I’ve not seen sudden death, only the usual drawn out agony.  Once people realise I get it, they readily talk to me about their experiences of dying too.  Doctors, nurses, friends, strangers, prove to be members of a secret society, one which  I found I had joined when my wife died.  Probably almost everyone over the age of 50 and most of those over 40 is probably secretly a member, but they only admit to it furtively and in hushed tones, and only if you give them the sign.  

It’s probably much the same the world over.  The similarities between dying in Finland and dying in Scotland were so great that I felt I was living in Groundhog Day.  Yet dying is the thing in our lives that we plan least for and accept no control over.  We deny those who are confronting it with the right to live it as they wish, as they had the right to live every other part of their life.  Instead we insist that at the point which death enters the frame we submit to the will of others and to a surmised charity, becoming little more than lab rats.  We hand on a responsibility that is not expressed and cannot be accepted.  Those we expect to shoulder it instead protect themselves with walls of procedure and alienation, and we find ourselves silently fed feet first through a mincer until the last drop of life is squeezed out of us.

Some studies seem to show…

•June 7, 2012 • Leave a Comment

Some studies seem to show that people who are very successful at making money tend to be psychopathic.  Of course the psychopaths laugh and point to their success.  Cranes infected with the Ribeiroa parasite would probably do the same.

All wars result…

•June 7, 2012 • Leave a Comment

All wars result from the need of those who believe their personal victory is of service to others,  for those who feel their service to others as their personal victory.    Without the complicity of latter the former cannot win.

It’s the little things…

•June 7, 2012 • Leave a Comment

It’s the little things in life that give the most pleasure, like not seeing your blood come out when it should just be urine.

I feel dizzy. …

•June 6, 2012 • Leave a Comment

I feel dizzy.  I’d thought the blood had stopped but it was a lull.   I am wondering how long this has been going on for.  I hadn’t looked, being so tired or lazy in the mornings that I have just sat on the throne and, well, que sera sera.

I’ve been feeling exhausted for months, for so long I can’t even remember when it all started, this dizzy tiredness.  It’s not normal.  I felt it first maybe a year ago.  I feel it now.   So I wonder.  My mother’s last words to me were in answer to my asking why she hadn’t told me she was ill:  “Darling, I really thought I was going to get better.”.  I suppose I must go soon to a doctor.  Will that be the moment my descent into ignominy and pain begins?  Other cultures have a trial of adulthood, we save it all up for when we die, held at the bring humiliated and crying out for meds until we choke to death.  If we’re lucky our hearts give out.

My sister is up at “our” croft now, three thousand miles away from me and a lot further by any other measure.  She hasn’t replied to my emails.  I had described the pain of my eldest stepdaughter’s estrangement from me.  She hasn’t replied to my saying I could have made it up there with her.  

After mum died I left it to my sister to put the stone on the grave.  It was for me a kindness to her, a deference to her grief.  But far from any recognition of this possibility I found instead that I had to badger her even to be informed of any progress or consulted on the design and finally it took her three years even to send me a photo of it.  Now, six years later I have found no way to return there, always imagining, hoping, expecting that we would be there with her, together, to go through the effects and memories, to lay our past to rest.  She says we must co-ordinate our diaries, as if that is the reason for any of this.  

It’s an odd feeling when the theatre ends and reality stands up and snarls at you.  We all feel we’re different, avidly devouring the news to confirm that: we would never have reacted like that; that our friends, family and background are nothing like theirs; or that we would simply never have got ourselves into that situation.  It’s other people that snap and murder, kill and burn, not us.  We’re normal, no, we’re better than normal, we’re special.  They are the weird people, with two heads and tails and horns with baby sacrificing parents and minds full of screaming.  That’s not us for fucks sake.  Oh, am I not allowed to use that word here?  Especially in the US, it seems to me that hypocrisy has been raised to an art form, a religion of sorts.  Where gun totting, chainsaw wielding heroes, scream out tracks on the radio and TV that have more beeps than notes, they are performed live in front of sell-out crowds.

I’m just about at breaking point, he snapped.

That’s always been a favourite poem of mine.  Adrian Henri’s I think.  I don’t know how that concrete poet set it out on the page but it looks resilient enough.

My loving sister…

•June 5, 2012 • Leave a Comment

My loving sister walked out of my life five years ago.  She never said why.  My world was beginning to implode at the time.  I told her.  She told me she was off to China.  She never told me when she’d got back.  That’s it.  

I think maybe she had got twisted out of shape when I fell in love and emigrated.  I hadn’t realised, and she hadn’t said anything, probably imagining when was being strong.  I found her empty earnestness grating.  That was over a decade ago now.  At that time I was my sister’s  rock, or so I imagined.  I held back oceans, that ceaselessly poured their problems into my ears, in order to be there for her.  Yet now the tables had turned she  excused herself and left, without a word, as if she had never been therel.  I imagine she thinks if things are distressing for her to witness that excuses her from bearing witness to them.

It began the worst patch of living I have known.  The years that followed have proved even worse than those which flooded in three years before, at 2am, as my wife’s lifeless body grew cold.  The nurses led me out of the room kindly, tidied up, made the bed and my cot, and laid her out, closing her mouth with a white shround around her head.  They arranged the flowers and lit a candle.  It was like a chapel when I returned.  And I was alone, my reason for being there over.  But still I sat there, trying to come to terms with nothingness.  When people tell you things cannot get any worse they are lying.  Things can always get worse.  I kissed her.  It felt faintly embarassing, ridiculous, morbid, theatrical.  The taste of the poisonous medications she was steeped in was transferred onto my lips from a dribble of filthy purple blood that had trickled from her nose.

Three years ago my sister’s reason for not phoning me was that she was afraid she might find that I was “no longer there”.  How can I write that so it contains the numbing, hopeless incredulity that her words sank into me.  There is betrayal, and then there is the betrayal of kin, the betrayal of that unimagined and yet permanently palpable expectation which is borne from being joined in blood.  

People sometimes volunteer that I have done something noteworthy, even heroic:  I left my home, career, profession, and country to be beside my future wife as her cancer attacked her.   Of course it’s flattering.  It feels nice, but it also feels as if they are seeing someone else, not me.  How could I have done anything else?  Even I knew there could be no way to live if I walked away from those I cherished and who cherished me.  What would my word, my dreams, my hopes, my ambitions, my love mean if they were proved empty?  This all sounds so pompous and camp, yet I am struggling to say something that is prosaic and everyday, no more remarkable or heroic than drawing breath or feeling pain.  Would you have walked out on your love?

Yet I now know I imagined I would receive support, and that seems to be the problem.  I didn’t expect to be clapped on the back, but I was confused to find myself unsupported; for my family and friends not to listen, not to want to feel out a path to fill the gaping holes.  But I was the hero.  I became exhausted physically, mentally, emotionally and spiritually.  I staggered about proudly accepting my role, excited, despairing, in a state of Grace, continuously misunderstanding, half blind, and letting the opportunity of much better futures for her daughters slip through my fingers.  

Looking back over the last eight years, foggy though though they are, I have to acknowledge I could have done no better, even as I see the absurdity of my struggling to shoulder it all.  I didn’t even speak the language of this place.  I had no voice.  I became the fulcrum, responsible for the functioning of it all, with responsibilities, without power.  

Absurd, even arrogant I look to myself now, yet I was your knight, you called me “Ritarini”.  You depended on me, proud and wonderful as you were, and you blessed me through that, and the love inside me blazed more furiously still.  I don’t know how to describe what is left.