I went to the doctor

I went to the doctor and the doctor said son, you look older than me and I’m seventy-one.¹

I read somewhere that you should not go your GP with a list of symptoms.  One or two maybe, but not a shopping list.  Hmm; if I have to pick a just a couple…

I start with the recent cardiology clinic; that won’t count as a symptom.  He takes it all very seriously – he hasn’t yet had a letter from the hospital – when he does we’ll talk again.  I also mention the idea of a pacemaker to control the arrhythmia.  He explains patiently and clearly why this won’t work in my case.  What might work is an implantable cardioverter defibrillator (ICD).  This gives an electric shock to restore a fast rate back to normal.  It’s about the size of a matchbox and fitted under the collarbone.  But only for ‘high-risk’ patients.  I know nothing about ICDs so envisage a long Google session coming up.  If this does prove to be an option, I have plenty of space to fit one.

He knows I don’t like being stuck on bisoprolol, warfarin and flecanaide, but that’s just the way it is for now.  I tell him we’re going to Australia in a few weeks (to see Annie’s sister and catch up with her youngest son, Dan), so he makes sure I have enough medication for the duration.  Tick; another thing off the list.

He’s looking at my forehead; now I can mention a symptom.  Although this is somewhat redundant as he’s beaten me to it.  So I offer a diagnosis instead: “I assume it’s hormones”.  Earlier that morning I’d been staring in the bathroom mirror at an eruption about to take place just above my left eyebrow; my own pocket-sized Vesuvius.  The last time I had stood before a bathroom mirror looking at spots was about 50 years ago.  Is this teen-age angst all over again?  I resist the temptation to give it a hand.

It’s not just my forehead; my nose is also host to an outbreak.  It’s very red – and starting to look a bit like the sort of nose a person with a drink problem might have; if you’re old enough, think W.C. Fields.

“No – it’s probably the warfarin.  We may have to take you off it, if it gets too bad”.  I explain that I’ve tried using E45 cream, but to no avail.  He prescribes a heavy-duty alternative.

I check my list; apart from the physiognomic volcanic activity, I’m looking and feeling remarkably well.  So we leave it at that for now.  I consider myself lucky to have such a good GP.

…. I went to the doctor and the doctor said, kid it was something that you ate or drank, It’s something that you did …

Luck.  I have this thing about luck.  Not superstition, but the chance happenings that can sometimes make or break our lives.  I also believe that we can make our own luck to some extent; recognising an opportunity when it comes along.

I put the fallout from lung surgery down to bad luck.  That I needed lung surgery at all was nothing to do with luck, however.  That was simply a consequence of bowel cancer cells getting into my blood stream.  Once cancer cells break through the bowel wall, their progress towards other organs is inevitable.  First stop liver, next stop lungs.  This is not some random trip – cancer cells do not get out the travel brochures and have a think about where they might like to spend the summer.  The secondary sites of specific cancers appear to be already programmed in.  Further surgery or chemotherapy or radiotherapy can stop them in their tracks or slow them down.  But it doesn’t change the nature of the beast – it’s just what they do – like some malevolent homing pigeon, they have to follow their instincts.

But once they reach their destination organ, then luck does come into play.  If my left lung was, say, the United Kingdom, then they could fetch up in the car-park at John O’Groats or the teashop at Land’s End; that is, in some distant, quiet, unspoilt part of my respiratory system.  But no – they settle for the cardiovascular equivalent of Spaghetti Junction – just off the M6 and about as far inland as you can get.  A high-rise mess of nerves, veins and arteries.

And as anyone who has driven around the M6 will know – once you start digging, chaos and disruption on a major scale are inevitable.  Which is why I find myself under the care of an ENT consultant.

And now for the good luck part.  A few months ago – I can’t remember what prompted it – I found myself staring at a blank Google page.  My fingers are poised over the keyboard and I’m wondering where to go next.  I type in ‘ENT’ and end up with a glossary of various departments up and down the country.  There’s a hospital in Birmingham that specialises in the treatment of singers with vocal palsy.  I get quite excited about this – but at the same time, can’t help thinking – why am I only just finding out about this now?  Why didn’t someone tell me earlier?

Perhaps that’s a bit unfair, although ever since the lung surgery in June 2010, I’ve been banging on about getting a singing voice back to anyone who would listen.  I saw an old friend a few weeks ago who’s recovering from serious injury after being knocked off his bike.  He needs specialist treatment and is having to research a lot of it himself; “I don’t know how we managed before the internet”.  We didn’t I guess; we just took what was on offer and got on with it.

I mention the Birmingham clinic, as an aside, to the speech therapist at a routine appointment in January.  I almost didn’t bother, the events over Christmas having overshadowed anything I might be feeling about myself – but something brought it to mind as we were finishing the appointment.  The speech therapist knew all about it – apparently they can reach parts of the voice box that most other ENT clinics can’t.  Before I can say anything, she offers to ask Mr ENT if he would refer me to the consultant concerned.

I’m apprehensive about this; will Mr ENT refer me?  It’s not a slight on his expertise – far from it – but the techniques and procedures available are simply not within his compass.  Will they agree to see me?  The clinic information mentions treatment for ‘professional singers’.  Do I qualify?  A bucket passed round in a pub after a gig is not the same as a salaried position, even if it does contain £175 in coin of the realm.  And if they do agree to see me – will they be able to do anything?

Watch this space.  It’s all a matter of luck.

… I went to the doctor and the doctor said, shucks that’s just about all, you owe me 300 bucks,                                                                                                                                              And you can call me in the morning – that is if you’re not dead…

Chorus; oh, oh, oh, I went to the doctor ….


¹ From a song by Loudon Wainwright III
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Mutt and Jeff

I need all my wits about me today.  Be alert.  I do my homework; copious notes, a list of questions to ask (numbered) and an update to my arrhythmia graph.  I do all this because Annie is off on a ‘jolly’ for a couple of days with her daughter-in-law Emma, for a bit of female bonding and pampering.  So I am at the cardiology clinic on my own.

I am not good at these things; I tend to miss important points and have to catch up with Annie afterwards in the hospital car park; “oh is that what he said…?”

But today the pressure is on; not only will I have to listen attentively but also prepare a thorough report for when Annie returns in a couple of days.  Woe betide me if I miss anything crucial.

I put the hour and a half I spend sitting in the waiting room to good use; I ignore the latest copies of Saga magazine and Hello! and go over my notes.  When my name is finally called I am good to go.

It gets off to a disappointing start and then goes horribly wrong, like a train crash when the brakes fail and the bridge over the terrifyingly deep river has been blown away by the mad Colonel in Bridge over the River Kwai.  There is an inevitability about it all.  After it’s all over, I imagine marching back to the car-park whistling Colonel Bogey and wondering what I’m going to tell Annie.  (She’s probably whistling ‘Don’t come the cowboy with me Sunny Jim”.)¹

I’ll never know because fortunately(?) she is in the middle of Exmoor with no mobile signal (thank you phone fairy) so I have time to get my story straight.  I need to construct my report based around the only two phrases I can clearly recall the doctor saying;  (i) “you’re a fast walker” and (ii)“they keep bowling you bouncers”.

The train starts to come off the tracks as I walk to the consulting room.  The consultant cardiologist comes out, gives me a furtive nod of recognition and then disappears down the corridor.  Not good.  I am met instead by what seems to be a short, elderly gentleman – his name badge says specialist registrar – who greets me with phrase (i).  I don’t understand and he explains that I must be a fast walker because I appear to have walked the entire length of the corridor from the waiting room to the consulting room in the time it has taken him to get from his desk to the door.

I think I should say at this point, that I am neither height-ist nor ageist.  At 6’2’’ only about 5% of the male population are taller than me, so I’m height–conscious and at 65 I am well aware of the effects of age (on me and other people).  The reason I don’t understand what he says is because I can’t actually hear him.  There are two reasons for this; what he says is unclear and vague – and I am starting to experience serious hearing loss.  So I bend down and ask him to repeat it.  Just so you get the picture, here’s the original Mutt and Jeff.² And this sets the pattern for the remainder of the consultation.

Mutt and Jeff around 1926

Mutt and Jeff around 1926

He apologises for the wait; he knows nothing of my case so catches up on his reading.  Inwardly I groan.  My preparation goes out the window – this was not on the list.  I’ve revised for the wrong exam.  He wades through my notes and then utters phrase (ii); again I don’t understand and cup my left ear and lean towards him.  He talks for a moment about cricket and appears to sum up my seven years of various treatments by referring to me as a resilient batsman who is still at the crease “in spite of all the bad balls”.

My emotions range from anger and frustration, through bewilderment and before finally settling on “oh well”.  I relax and resign myself to a consultation based on mutual confusion.  In retrospect it’s a bit more than that; I simply give up.  I see the whole thing as pointless.  We spend most of the time with him asking me questions, misunderstanding my answers, me repeating myself, then me not getting what he’s asking – and all the time he’s taking copious notes, scribbling all over my file, in the margins, then crossing out and starting again.  Having been under the care of this cardiology department since the lung resection in 2010, it seems as if we’re starting again.

There’s confusion over flecanaide (pill-in-the pocket).  He thinks I take it every day.  I explain it’s on an as-needed basis; i.e. each time I have an arrhythmia.  “How often is that?”  I’m about to get the graph out and show him that it varies – over the past six months or so it seems to be every 3 or 4 weeks.  But I think this will just confuse the issue even more.   So I try to explain, but get bogged down in the differences between elevated heart rate from exercise (which is normal and does not last long) and the episodes of arrhythmia when my heart rate will suddenly rise to, say, 100bpm for no apparent reason and then stay at that level – like an engine racing or a switch thrown – for hours at a time.   I am perfectly clear about the difference – I don’t take the flecanaide when my heart rate rises after exercise – I only take it when the throttle is stuck.

He also wants to know who prescribed it and how much I take; it was prescribed by the electro-cardiologist at Oxford when I had the ablation and the dose is 150mg.  (It’s all in my notes.  Twice now, as it happens).  It takes longer to clarify all this than it takes for you to read about it.

I wish Annie were here.  She still has her teachers’ hearing (and the ‘eyes in the back of her head’ – which she did not hand in when she retired) and would have sorted this out in a fraction of the time.  But she’s off enjoying herself and I’m in an episode of Mutt and Jeff where two people are divided by a common language.

He asks how many flights of stairs I can climb before I’m out of breath.  It seems this is a test.  I tell him I can manage two without much difficulty.  He’s almost dismissive – not in a rude way – he’s pleasant throughout the whole time we talk.  His yardstick seems to be one flight of stairs; if I can manage that without getting out of breath, then my AF is trivial in comparison with the other things I’ve had to deal with; it’s just a nuisance; “lots of people have AF” and as such my questions become irrelevant.  Which, in a way, is a good thing.  If my interpretation – and, more importantly, his – is correct.

And then I’m bowled out – I didn’t see this one coming; “we’ll see you in 6 months time”.   I pick up my bat and head back to the pavilion.  (I don’t actually follow cricket, I’m just entering into the spirit of things).  I’m due to see my GP in a couple of weeks and I’ll see what he makes of it all.

I’m embarrassed by the way it all went.  I explain to the doctor numerous times that I can’t hear him properly, but there are only so many times I can cup my ear.  It looks almost comical – as if I’m mocking him.  Which I’m not – I’m just desperate to hear.  His response is to repeat what he says – but in exactly the same manner so I don’t really get much of it.

I wonder if I’ve been dismissed by the consultant – that my arrhythmia is no longer serious enough for him to deal with.  But it’s a big deal for me.  I still have questions; why does it happen?  (OK – it’s paroxysmal AF, which by definition is sudden and unexplained).  Why does it vary in intensity? – sometimes it’s over in a couple of hours, at other times it can last all day.  And why is it so debilitating?  I know these are difficult to answer because that’s just the nature of the beast – but what I really want to know is if a pacemaker would solve the problem, rather than a lifetime of drugs and wobbles.  But that’s a question I never get the opportunity to ask.

I’ve ignored the deterioration in my hearing up till now; we’ve just bought a fancy soundbar for the TV because I can’t hear dialogue without turning the volume up to a level that would force General Noriega³ out of hiding (if he lived next door).  This device lifts speech above background sounds and music, so it’s audible at lower volumes.  I need something similar.  I feel I’m about to enter the world of the daytime TV adverts for things like chairs that eject you when you can’t get out of them without making a song and dance about it, or circulation massagers or those things they put behind your ear.  Where you get a free pen if you send off straight away – or is that life insurance?

Friends who read this might be surprised at this revelation; I confess that when I smile and nod my head vigorously during conversation I’m trying to hide the fact that I have not heard a single word you’ve said.  Annie has cottoned on though and will address a particular ear when she has something important to say.

I’m due to see Mr ENT in a couple of weeks for an update on the voice.  Perhaps he’ll do a 2-for-1 deal and sort my ears out at the same time as my throat.

¹ A song by Kirtsy MacColl
² There are 3 definitions:
(i)   Cartoon characters created by Bud Fisher in 1907 and probably the first daily comic strip.   (ii)  A pair of people having dramatically different characteristics, such as height or nature.   (iii)    Also rhyming slang for ‘deaf’.
³ When dictator Manuel Antonio Noriega took refuge in the Vatican Embassy in Panama in December 1989, the US Army played loud music (Van Halen) to drive him out.  Which it did.
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two fat dogs

At any other time this venture would be pleasurable.  And fun.  Although, as it turns out, both these qualities are present in some degree.  Which is just as well given that my previous post was a real ‘downer’ coming hard on the heels of positive, uplifting thoughts and resolutions.

Rob’s funeral is arranged for New Year’s Eve – his wife and children want to draw a line under 2012 and start 2013 afresh.   Getting family and friends to the middle of France in the middle of the Christmas/New Year holiday proves a logistical nightmare.  There is a saying in France that “Christmas is for Children, New Year is for adults”.  So while shops and services are back to normal on December 26th, this is short-lived and things wind down again as New Year approaches.  Hotels close, Gites close, Resturants close and Annie spends half a day on the phone to various places within a 30-mile radius of Rob’s house seeking accommodation.  Eventually she finds a B&B in the back of beyond, which will accommodate us, her Mum, two sisters and a niece as well as her son Chris and wife Em.

It’s a large, rambling place dating in part from the 14th Century.  It’s the sort of place you might see on a makeover television programme – it has all the right ingredients; hopes and dreams as the prospective owners visualize what they might do with the place.  Then drama and despair as the walls collapse in a pile of rubble shortly after they sign on the dotted line.  As with all TV makeovers however, it all comes right in the end; walls are rebuilt, a new roof fitted and we’re able to sit down in relative comfort with a cup of tea after a 10-hour drive from Calais.

As well as two children, the owners share their home with a pair of Harris hawks, a European Eagle Owl, an enormous ram called Timmy and two fat dogs.  There are other animals and birds around – chickens, ducks and sheep – but it’s the birds of prey and the ram that really make you sit up and take notice.

The hawks sit on their perches making unfriendly noises; Timmy – wagging his tail and nuzzling his head for a pat, clearly thinks he’s a dog – although I can’t see him fetching a stick.  And with a couple of attentive ewes around, he has more important duties – this is a working ‘not quite’ farm with little room for sentiment.  Their pig has gone to the sausage-maker in the sky and by the time I get round to I writing this, a couple of their lambs will no longer be with us.

When the owner asks after breakfast if we’d like to feed the animals, we readily agree, not realising he means to each other.  My ‘townie’ sensibilities kick in when he carries a box of day-old chicks down to the Eagle Owl’s enclosure.  I pass on the invitation to give the bird, magnificent though she is, her breakfast.

If you’ve ever wondered what an Eagle Owl eating breakfast looks like, here’s a picture;

breakfast is served

breakfast time

Of all the animals it’s the two fat dogs that fascinate me the most.  Apart from their size (or rather, girth) I’ve never seen anything quite like them before.  A bit like a spaniel, but with a pointy face.  Or rather, in the case of these two, a small hairy beer barrel with a pointy face.

The breed is Brittany (named for that part of the country) and their purpose is to retrieve game brought down by birds of prey.  The dogs are affectionate and good-natured but if asked to retrieve game would probably roll over and laugh.  Or whatever the dog equivalent is.  And then struggle to get back up again.

The B&B is comfortable, the food good, but the owners have clearly not learned portion control.  The breakfast table heaves with baguettes, croissants, brioche and toast as well as various cereals.  Dinner too, would feed twice our number and I’m a little embarrassed about leaving so much.  I mention this to the owner, but he just shrugs and explains that the leftovers go to the animals.  All the animals?  Yes.  What – including these two?  And suddenly it hits me; perhaps two fat dogs – whilst sounding a bit like an obscure bingo call – is simply the result of trying to please the guests a bit too much.

We stay four days in all.  It’s clear, on the way back home in the car, that this unexpected encounter with nature (red in tooth and claw) has provided sufficient diversion, or rather balance, to our primary reason for being here. Chris and Em talk about going back for a holiday.  And under other circumstances I can see why.  It stopped us getting too maudlin – there were plenty of laughs among the tears.  Rob would have enjoyed it.   Perhaps he did.

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So this is Christmas

It’s Wednesday 19th December, early afternoon. Somewhere, a radio is playing the usual Yuletide selection.  Annie and I are sitting at the kitchen table making a list for the Christmas shopping.  We have Annie’s mum coming for a week and Chris (Annie’s eldest) and his wife Emma coming for Christmas dinner.  The turkey is ordered, the kitchen, while functional is not quite finished and, as far as we can tell, everything is going to plan.

There’s a call on Annie’s mobile and I can tell from her expression it is not a call wishing us happy Christmas.  Her face colours and all I hear is; “do you want me to come?”  Her brother Rob has taken a turn for the worse.  Over the past few weeks the left side of his face has dropped and he’s not been able to open his left eye.  It’s not a stroke and a recent brain scan is clear.  Now he can’t grip with his left hand, he’s confused and he’s just had a fall.  His wife Lesley could do with some help.  Their son James is due to go on Sunday and their daughter Liz will go for New Year.  Annie calls her nephew – he can’t get any more time off work to go sooner, so she steps up to the mark.

“Will you be alright?”  I don’t really want her to go, but I know she has to.  We’re not the first couple to spend Christmas apart and we won’t be the last.  “Of course” I say; “there are plenty of little jobs to finish off in the kitchen.”   In my head I hear the radio; ‘it’ll be lonely this Christmas….’

Christmas is like a house of cards; so many plans stacked up – just one out of place and the whole thing comes down.  “What about mum?”  A phone call to one of Annie’s sisters and her mum is taken care of.  Someone else’s house of cards is rearranged.  “What about the turkey?”   Hmm; that will be a challenge even for me.  We decide not to cancel – no point in spoiling the turkey’s Christmas.

She books a flight to Poitiers for Thursday 20th.  No cheap deals – that’s the price of Christmas – and cancer.  I cancel a blood test to get Annie to the airport.  The surgery is understanding and fit me in for Christmas Eve.  There are no flights back from Poitiers until January.  After a bit of searching around we find one from Limoges on Boxing Day; just 1 seat left.  We take it.  We’ll postpone Christmas rather than cancel it.

Friday 21st 8.30am.  I’m in the supermarket and my phone rings.  Annie’s in tears; Rob has collapsed and he’s on his way to hospital.  The medics don’t know if he’ll make it.  Now the reality of living in rural France kicks in.  They live between Poitiers and Limoges; two separate health authorities.  The ambulance comes from Limoges; his doctor wants him to go to Poitiers.  A compromise is reached – an ambulance from Poitiers will meet him half way.

Annie’s on her own when Rob collapses.  She has a ‘headless chicken’ moment (her words) – she can’t get hold of Lesley, she doesn’t know the emergency phone number and has no idea what to do.  Then a moment of sheer brilliance (my words); she remembers that the last number Rob called on his phone was to the local surgery, the previous evening.  She hits ‘last number re-dial’ and finds herself speaking to his doctor.  She comes straight away, leaving her surgery full of patients to wait.

There are a couple of remarkable things about this episode; (i) Annie’s inspired use of ‘last number re-dial’ (I don’t think it would have occurred to me), (ii) when she does phone, she speaks to the doctor straight away.  Readers in the UK may need to pinch themselves at this revelation – the last time anyone here phoned a surgery and spoke directly to a doctor was probably in a 1930s film.  In black and white.  Where they all had a ‘nice cup of tea’ afterwards.  As for a GP in rural France speaking perfect English – well of course – what do you expect?

The phone rings again around lunchtime. Rob’s unconscious and the prognosis is grim.  We need to get James and Liz there as soon as possible.  New plans are hatched.  They live in Manchester and if they can they come to me on Friday evening, I’ll drive them to France on Saturday.

I phone the surgery to change my blood test again.  The practice secretary is great – I explain what’s going on and she talks to my GP.  He reckons I can manage until the 3rd January without a blood test.  The secretary organises additional drugs to see me through the intervening period.  In the meantime Emma arranges travel documents for the car (and reminds me about the other stuff; triangles, breathalysers and so on).

I check the Eurotunnel website for Saturday; no morning trains available.  I phone and explain, my voice cracking with emotion and although they’re sympathetic, the best they can suggest is to buy a flexible (priority) ticket, turn up, bump someone else out of the queue and hope for the best.  I explain all this to James.  He’s not keen.  He’s found a flight from Liverpool for Sunday.  Even if we could get a place on the Shuttle, it’s about a 2-hour drive to Folkestone from MK and then a 10-hour drive from Calais to the Limousin.  It’s not going to save a great deal of time.  So, a rethink.

Friday 21st 2.00pm.  Rob regains consciousness for a little while and asks for a glass of water.  This respite doesn’t last long, but he drops in and out of consciousness for the rest of the day.  In the meantime his children manage to book flights from Stansted for Saturday morning; so they’ll come down to me on Friday night and I’ll take them to the airport.

Friday 21st 8.00pm.  A new scan shows that the cancer has spread to Rob’s brain; I ask why this didn’t show up two weeks ago.  The original scans are clear; it seems this awful disease can move fast when it wants to.  And now it plays games.  The doctors are surprised that Rob seems so lively and aware of his surroundings; he’s looking forward to his children coming.  Annie worries that this will give his family false hope; the doctors are still adamant that the prognosis is not good.  They think he has hours, perhaps days at best.

It’s about midnight by the time James and Liz arrive; there are now four of them – they’ve each brought their respective girlfriend/boyfriend for support.  They’re in remarkably good spirits and holding up well, all things being considered.

Saturday 22nd 8.30am.  We set out early for Stansted.  No calls during the night so we assume all is quiet.  Despite the weather and the traffic we make good time, and then as suddenly as they appeared, they’re gone.  I drive a couple of miles to a service station, get a coffee and call Annie.  She’s been at the hospital since she arrived; she smells (she says) and her hair is a mess.  Lesley has been home to get food and check on the dogs.  It’s about an hour’s drive each way.  When the children arrive Annie will go to the house for a shower and sleep.  And do her hair.

Saturday 22nd 7.00pm.  The Gods of Arrhythmia are jealous and demand some attention.  My heart rate gets stuck at around 115bpm for about 5 hours.  I wish I knew why it did this.  The pill-in-the-pocket seems slow to take effect and it’s still about 90bpm when I wake next morning.  I put it down to stress and resolve not to tell Annie.

Sunday 23rd 9.00am.  An update from Annie; a trip to the hospital in the middle of the night to calm Rob down – he was trying to get out of bed.  I saw a lot of this when I had the bowel operation; older men usually, in great distress trying to find their way home, dragging their drains and catheters like Marley’s Ghost.  Whatever else is going on in Rob’s head, the homing instinct is strong.

Further messages throughout Sunday suggest Rob is having a good day.  I’m pleased that James and Liz are there to see their old Dad – the joker, the funny man – rather than the sick Dad.  Long may it continue.   I have a good day too.  A bit of bike fettling, some painting in the kitchen and then supper with Chris and Emma.

Monday 24th 7.00am.  The phone wakes me.  I know it’s all over before she speaks – we’ve adopted a code without even thinking about it – a text message means everything is fine, a phone call means it’s not.

“He’s gone”.  Rob passed away about three in the morning.  Annie wants to come home now, but she’ll have to wait for her Boxing Day flight.  She’s concerned about me.  And I’m concerned about her.  I reassure her that I’m fine.

Survivor guilt kicks in.  It seems wrong – although Rob would never say it – to make, only a few days ago, a big song and dance about being a cancer survivor.  And I know that Annie feels this too.

A few hours later I’m in a queue waiting to collect the turkey.  It’s busy and buzzing with excitement – people wishing each other a happy Christmas.  At first I don’t want to join in; it’s not a particularly happy Christmas for our family as the news spreads out from France to the UK, to Australia and relatives sit down and digest the news.

But I relent – it seems churlish to visit my gloom on others.  Life goes on.  I think about Annie and it’s as if we’re stuck in two different worlds – I’m here where everything seems ‘normal’ and Annie’s in CancerWorld.   My world is full of colour and sparkle and noise – I imagine hers to be sombre tones, perhaps even monochrome.  And quiet.

I listen to the Christmas Eve Carol service from Kings College while I think about  supper.  I’m not a religious person – I just like the music.  And it’s become a sort of tradition; it always takes me back to singing carols in the school choir.  The music washes over me – it demands very little – and I think about Rob.

I wrote about his approach to his cancer, back in April¹ and in September 2011².  I won’t say he fought a hard battle against the disease because I don’t like that analogy.  Talk of ‘battles’ or ‘fights’ implies winners and losers – the strong against the weak – and anyone who finally succumbs to this disease is not a loser.  Nor are they weak.  Rob never gave up.  It’s as simple as that.  He was an engineer and would pour over scans and printouts and charts as if trying to trace a fault in a system – to understand how his body worked so he could find the best way to deal with the disease.

I can’t help wondering if living in France made Rob’s situation more difficult.  He would probably say not – they gave him drugs he could not get in the UK.  And they gave him Hope.  When his oncologist in Manchester asked him why he was moving, Rob said; “if I’m going to die, I’d rather die in the sun than in the rain and gloom of Manchester”.  He loved living in the sun.  He was proud of his house and his small field across the road where he could let his dogs run.  But what he, or rather Lesley, has missed, is family and friends close by to share the load, cook meals, walk the dogs, fetch and carry – and probably most important of all – give a hug every now and again.  No health service can do that.

Tuesday December 25th.  So this is Christmas.  A strange day; phone calls, text messages and emails keep the family in touch and although we’re on our own, we’re not really – if that makes sense.  Rob links us all together.

I cook Christmas dinner for Chris and Emma.  While the turkey is in the oven, I just chill out and watch a couple of ancient episodes of Cheers that I keep for emergencies.  A sad day and I’m roaring with laughter.

Chris and Emma arrive around midday.  We save the exchange of presents for another day.  I don’t do the festive table decorations or the crackers; that’s Annie’s area of expertise. We play a couple of games, eat more than we intend and pass the time in better spirits than might otherwise be expected.

Rob is not left out; Annie and the family spend some time with him at the hospital before settling down to their own Christmas meal.

After Chris and Emma leave, I watch a bit of TV, read and then, when the realisation dawns that Annie’s coming home tomorrow, a late night dash round with the vacuum cleaner in an attempt to make the house resemble in some small way, the state in which she left it.

And that was Christmas.

RIP Rob.  You had a good life and by all accounts, a good death.  You were not in pain or discomfort and your family were there.  You spent your last day laughing and telling jokes and conspiring with your sister; “Ann – you’ve got to get me out of here….”  So – very much a normal day for you.  And then you left.

The night-duty nurses looked after your family well; when they couldn’t find the right words in English they used Google translate to print out messages – they wished they could have done more; but you did not suffer.  You were at peace.  I guess that’s the best any of us can hope for.

Rob and Annie, August 2011

Rob and Annie, August 2011

This is how I remember you; we’re on the VeloRail – 2 bikes and 2 passenger seats attached to a railway cart – and we’re cycling about 20km along a railway line (disused…).  It’s hard going and I have to give up – I just don’t have the strength to turn the pedals.  But you do – you take my turn, as well as your own.  Because that’s the kind of man you are.  Big, strong and generous.

I’m pleased that I got to know you, although saddened that the thing we really shared – that we spent most of our time together talking about – was this awful disease.  Rest in Peace my friend.

¹ See Brother-in-Arms April 10th 2012
² See An accident of life September 2nd 2011
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special day number 7: december 16th 2012

Well here we are again – another year gone – and seven since this particular journey began.  Seven years.  Seven years to the day since I first set foot in CancerWorld.

Seven years is a long time – a Biblical timescale (what with plagues and famines and so on).  I’ve had my own personal apocalypse; my bowel, liver and lung have been butchered.  My veins have been filled with poison and my cells zapped with death rays.  All this, in an attempt to stop the spread of this insidious, clever, manipulative, destructive and ultimately heart-breaking disease.

But enough of that – today is a day to celebrate; December 16th 2012 is Special Day Number 7.

‘Special Day’ sounds a bit … well … naff, a bit half-hearted, as if I couldn’t come up with a better name.  It’s all about survival; a day for jumping up and down and shouting “I’m a survivor”.  It’s as important (if not more important) than a birthday; if it was a Roman general it would be granted a Triumph through the streets of Rome and the crowd would cheer and party like it’s AD99.

But I digress.  We are survivors from the moment we’re first diagnosed; from the instant we know we have the disease.  Some of us survive longer than others – but we all start from the same point.  Although, strictly speaking, I guess we’re survivors from the moment a gang of delinquent cells decide they are not going to conform to the usual model of growing up, settling down, etc, like their parents did, but live in the fast lane, dividing and subdividing like there’s no tomorrow.  Which is often how it turns out once they get started down that particular road.

But we can never know that precise moment – unless we are blessed with prescient good (or bad – depends which way you look at it) fortune.  For all practical purposes, survival starts the moment the oncologist stops looking at his/her computer, or shuffling papers or whatever it is they do while they think about what they’re going to say, and turns and gives us ‘that look’.

In my own case it wasn’t an oncologist but a colorectal nurse who broke the news, following a colonoscopy.  And so I became a cancer survivor on Friday 16th December 2005.  Each anniversary is celebrated as something ‘special’ (hence it’s rather unimaginative name).  In the early days its passing was marked by a glass (or two) of fizz; lately, in a bid to keep the arrhythmia at bay, it’s been a cup of tea.  But very nice tea.  With cake.  Perhaps rather than Special Day, I should rename December 16th Cake Day.

It’s worth saying again – seven years is a long time.

My early wanderings in CancerWorld were accompanied by a mix of naiveté, ignorance and fear.  A new boy at Dotheboys Hall hoping for a Nickelby to rescue me.  And now I’m a senior, an old hand – someone who’s seen it all.  Or at least a lot of it.  The innocence and ignorance have largely gone, replaced by a quiff of nonchalance; the fear though, never quite goes away.

Last December on Special Day Number 6, as I looked to the coming year, I hoped for a ‘new voice’ and a ‘year free of treatment’.  The Cancer Fairy must have heard because both those wishes have been granted (more or less – although one shouldn’t really be picky when a fairy grants a wish).  I can sing again.  Not loudly and not with my previous range – but enough to amuse myself and not embarrass my friends.  And enough to warrant a new guitar and engender the idea of performing again in public.   It’s not the old voice so it must be a ‘new voice’.

And a few days ago I received a nice letter from the cardiologist; it began ‘Dear Ian ….’.  Our relationship has clearly improved somewhat in the past 18 months or so.  We got off to a bad start when I was trying to juggle the conflicting demands of repairing my heart and repairing my voice.   To recap – in 2011 I was taking Warfarin whilst waiting for a catheter ablation to try and cure atrial flutter (resulting from lung surgery) – at the same time as waiting for a procedure on my voice to deal with a paralysed vocal cord (also resulting from lung surgery).  The ENT consultant would not operate on my voice while I was taking Warfarin – and any attempts to stop the drug were met with derision by the cardiologist because he didn’t think the voice procedure was important enough.  Or even worthwhile; “I wouldn’t hold out much hope for it being successful.” ¹

Since then we’ve been on a team building exercise, had the mandatory group hug and learned a little about each other.  The angry phone calls between him and Annie (because I couldn’t) are all in the past.  Now I’ve had the voice procedure, the cardiologist and I are, quite literally, on speaking terms.  Writing terms even.

He’s seen the results of my latest ECG.  After the formalities he urges me to see my GP as soon as possible to start another course of Warfarin.  This is not a temporary measure – this time it’s to be permanent.  The catheter ablation apparently cured my atrial flutter, but as often happens in these cases, resulted in atrial fibrillation, which in turn has increased my risk of a stroke.  He signs off by looking forward to seeing me in the New Year to discuss ‘my further management’.

All in all, 2012 has turned to be a pretty good year.  Right now the hotspot in my abdomen, which grabbed much of the limelight these past few months, appears dormant.  The heart continues to beat, albeit in a somewhat haphazard fashion.  And the voice – though not what it was – is better than expected.  So thank you to all the medics and nurses and secretaries and the unknown, unseen people who got me to this particular anniversary.  For the coming year I’ll go further than a ‘year free of treatment’ and hope for a year free of cancer.  Are you listening Cancer Fairy?

I also want to say thank you to you – the person on the other side of this screen, reading my thoughts, fears and hopes.  You make a difference.  Some of you are personal friends and some are virtual friends – although we’ve never met, we’ve exchanged emails over the years because this poxy disease has brought us together.

The statistics page on this website shows me that there are far more anonymous readers than those I know (personally or otherwise).  Apart from friends and family who have signed up for an alert each time a new post is published, the majority of readers (or visitors) have simply stumbled across this place by virtue of a particular word or phrase they just happened to type into a search engine.  The most common search term is ‘bikes’ followed by ‘posterior chink’ and then ‘atrial fibrillation’.  I wonder what they think when they look for information on say, a Specialized road bike, and end up here.   I can’t recall a single entry to do with cancer.  And no one has entered ‘bikes+posterior chink’.  Although I Googled it just now and this blog was the first entry.

The statistics page not only tells me how many people are reading each post, but also where they are from.  The geographical spread is quite amazing; (in alphabetical order) Australia, Brazil, Bulgaria, Canada, Colombia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hong Kong, Hungary, Ireland, India, Indonesia, Iraq, Israel, Italy, Japan, Latvia, Luxembourg, Malaysia, Mexico, Netherlands, New Zealand, Nigeria, Paraguay, Philippines, Poland, Romania, Russian Federation, Serbia, Singapore, South Korea, Spain, Sweden, Switzerland, Syrian Arab Republic, Taiwan, Turkey, UK, Ukraine, USA, Vietnam.

This global connection reminds me that the world can sometimes seem a sad, bad place.  But for every atrocity or appalling act of greed or selfishness there is heroism, generosity and hope.  And the greatest of these is Hope.

when Mother Earth meets Father Sun

when Mother Earth meets Father Sun

I wrote about this place in the summer².  It’s Monument Valley, Arizona, just before sunrise.

Dawn has symbolic meaning in many cultures; rebirth, hope; a fresh start.  For me, it sums up the spirit of this special day.  It’s hard to put into words without sounding trite or clichéd – but I feel as if I’ve been given another chance – and in the chaos of everyday life I sometimes lose sight of that.  Celebrating today reminds me how lucky I am.

I tip my hat to all of you reading this and to all members of the great cancer family,whoever you are and wherever you are.  If you have a drink handy, a toast;  “Slangevar”³ as my Scottish mother used to say (before she gave up alcohol one Christmas, following an unfortunate incident with a goose and a glass of sherry.)

1 See Dr Heart-Less, March 19th 2011
2 See when Mother Earth meets Father Sun, June 18th 2012
³ “Good health” in Gaelic
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if the nurse comes in we’re doomed: continued….

It’s been three long months.  Good months and bad months.  I can hardly remember a more turbulent period of highs and lows in my life – at least not since I was a teenager.  Annie’s not immune from the roller coaster of emotions either.  Her beloved younger brother Rob is poorly – his cancer has now spread to his bones.  Her eldest son Chris has had CT and MRI scans because of an injury playing rugby and her youngest, Dan, phoned from Cambodia to say he was not coming home this month as hoped, but moving on to Australia for a couple of years.  And then there’s me.  All the men in her life are causing her heartache.

We managed to escape all this for a while and had a good couple of weeks in France, particularly in the South.  The most taxing problem we had to deal with was “where shall we eat tonight?”   On our return Annie took her crowbar¹ to the kitchen and what started out as an “I’ll just take these shelves down…” has turned into a work of epic proportions involving a cast of builders, plasterers and electricians.  And us.  I say ‘us’ – it’s more her than me really.  She is turning our kitchen and dining room into one large room.  At the time of writing we have nowhere to cook and nowhere to eat, just piles of rubble.  And we can expect it to be like this for another 6 weeks or so.

I stand back because I can see it has therapeutic value – every yank of the crowbar or whack of the hammer is a blow against the things that are causing her distress.  I also stand back because I have to; I’m struggling to keep up.  It takes me a day to do what I could once have done in a couple of hours.  After one session of lifting worktops (I now know that a 2 metre long laminate worktop weighs 30kgs) I’m nauseous and my heart goes into overdrive.  Each time I try to eat I feel sick.  This general malaise lasts a week and I see my GP; he thinks my stomach is making too much acid for some reason and prescribes a proton-pump inhibitor; “Perhaps you’re overdoing it.”

So while Annie wields her weapon of choice, I sit and wait (…. while an Angel, contemplates my fate….²).

I think I’m more anxious/scared this time than on previous occasions, though I’ve probably said this before.  I’ve really stared into the abyss – no – climbed down, had a good poke around with a pointy stick, examined the horrors in the minutest detail, imaging that my fate would be to be stuck here forever.  With each ache and pain in my arms and legs and back, I think of Rob and convince myself that my cancer has returned.  And yet …

…. the human spirit (or whatever it might be), as it has done so many times over these past 6 or so years, confounds me, by lifting me out of this gloom.  There have been times over the past three months when I’ve never felt happier in my life.  And these snapshots of pure joy come in the strangest of places.

Standing in the plumbing section of B&Q looking at sink wastes (I’m fitting a new sink in the utility room) I’m overcome with happiness – I just want to sing and dance – simply because I am here, doing something so ordinary, something that so many people do all the time without a second thought.  And a few weeks ago whilst driving through southern France, we cross the Millau Viaduct – the shear audacity of building such a thing would surely lift anyone’s flagging spirits.  But that’s not the best part; a little later, at the visitors centre, I’m sitting in the sun with Annie, a coffee and a slice of something made of chocolate and pastry – and I’m thinking ‘this is the life’.  And it is the life.  Never underestimate the power of the ordinary.

And so now we get to it.  No Angel of Death!  Instead we see the nice professor of clinical oncology who we met a year ago.  He cuts to the chase – the scan is clear.  It hasn’t changed in 3 months so the consensus is that it’s probably benign.  He doesn’t know what it is.  He suggests it could be a remnant from surgery “your body has been through so much in the past few years.” (So why did it only show up in the summer? – oops – forgot to ask that question).

He’s incredibly understanding and helpful.  And a good listener.  I explain what’s been going on in our lives over the past 3 months.  He acknowledges that this has been an extremely anxious time for both of us and does his best to reassure.  He draws a graph showing the  probability of recurrence of cancer over time.  It peaks at 1 year after treatment (i.e., the greatest probability of the cancer returning happens in the 1st year) and then the chances of recurrence decrease with each passing year.  It looks something like this:

It’s been almost 2½ years since the lung resection; “You’re over the top now and that’s good.”    Annie points out that we’d almost got to the bottom in 2010 when the cancer returned.  He nods; “we reset the clock each time.  You’re well on the way back down again.”   So now it’s just routine scans every 6 months for the next 3 years.

He spends some time talking about the heart; it transpires that the cardiologist has written to Oxford expressing concern about the clotted stump³, suggesting I may need to go back on warfarin and wants to know if this would be a problem for them.  No – as it turns out it’s just a problem for me; “We have no objection.  I know warfarin is a real pain, but I don’t think you have any choice – the fact that you are experiencing AF so frequently increases your risk of a stroke.”

OK – but what about the nausea, the aches and pains?  He puts it down to the following; (i) anxiety, (ii) overdoing it in the house and (iii) – perhaps the real killer – “you’re not as young as you used to be”.   I hear a snigger next to me.  And with that it’s all over.   

As we walk back to the car park I confess to Annie that I really thought the cancer had returned. “Do you think I haven’t thought that too?”  She smiles and says this is one of those moments when we should do a leap in the air and kick our heels together; “Like they do in cartoons”.  I haven’t the energy but get the idea.  She tries, but two weeks of wielding a crowbar have finally caught up with her.  If she’d managed it would look something like this:



¹ Readers of my previous blog and the subsequent book It’s not over till the bag lady rings will recall that Annie has a thing about knocking down walls.
² Angel of Death – a reference to the cancer specialist nurse who sometimes accompanies an oncologist when bad news has to be delivered.  Or a reference to Angels by Robbie Williams.  Take your pick.
³ See if the nurse comes in we’re doomed; July 7th 2012
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arrhythmia, economics and ice-cream

“This is not normal”.  I’m at the cardiology clinic, showing my latest arrhythmia graph to the consultant.  It shows a more or less horizontal line of dots (splodges rather – thanks to the cheap printer paper I’ve used) spaced at random intervals, as if Jackson Pollock had splashed his paintbrush through a narrow slit.  The horizontal line represents time and the splodges represent arrhythmia events (attacks?)  I explain that some of the events are ectopic only, some tachycardic only and some a mix of both.

I can see no rime or reason as far as the frequency is concerned – the shortest gap between events is 2 days, the longest, 36 days.   Nor can I fathom cause and effect.  Last year, when the voice operation was postponed a couple of times because of various arrhythmia events, I was advised to try anything to keep my heart stable; so I stopped drinking alcohol and cut down on heavy meals and spicy food.  If I did lapse – a glass of fizz to toast a wedding or a beer on holiday, an arrhythmia would inevitably follow later that night.

We discuss options; “how do you feels about another ablation?”  I’m not sure.  If this is Atrial Fibrillation rather than Atrial Flutter (which is what he suspects) then an ablation might not work – and the risks are far greater the second time.  He’s also concerned about the ‘clotted stump’¹.  He’s waiting for a report from the cardio-vascular surgeon who carried out the original lung resection.  If it poses a risk I may need to go back on Warfarin.

I remind him that when I saw him back in January, he had asked that the next time I had an arrhythmia, I should go to A&E and get an ECG.  I confess that as they almost all happen in the middle of the night I had not bothered.  He nods and suggests a 48hour heart monitor.  “I want you to try and provoke an arrhythmia – eat, drink – do all the things you think might cause this”.  Hmm – should I really go to town? “Anything.  I really need to see what’s going on”.

He gets his chance sooner than we both expect.

Two days later: it’s about 9.00pm and I’m watching TV.  I feel the first telltale da da dum da dum da …. and realise my heart beat is ectopic. I try deep breathing but to no avail; then my heart goes into overdrive – 141bpm, before dropping back to 55bpm then up to 141 again.   I recognise the signs – it’s building up to a ‘big one’ and so decide to go to A&E this time to get an ECG.

It’s a cold and rainy Thursday night and A&E is packed.  I explain to the receptionist why I’ve come – show her a letter from the cardiologist asking me to come in to A&E for an ECG – and she understands straightaway; “I’ll put chest pains – you’ll be seen quickly.”  I feel a bit guilty about queue jumping, but a quick ECG and I’ll be out of their way.  Besides which – I need to take the pill-in-the-pocket but can’t before the ECG.

I’m called in to the Triage nurse in a matter of minutes.  I explain again – he hooks me up to the machine, switches on and then goes very quiet.  He leaves the room and then comes back a moment later; “I need to do another one in about 15 minutes.”  Before I know what’s happening I’m lying on a bed and a nurse is putting a cannula in my arm.  I explain that I don’t need a line in – I’m just waiting for my ECG.  The nurse fixes me with an ‘I’m only doing my job – and they’ve told me you’re not going anywhere’ look.

Another ECG and I’m whisked off to the resuscitation unit.  I protest (sweetly) and explain I have CT scan in Oxford the following day and so can’t stay in hospital.  My pleas are ignored – no information, just confirmation that I’m stuck here.  I need my pills.  A cup of water and we’re (long-suffering Annie is hunkering down for another night in A&E) left to our own devices.

After a couple of hours a doctor comes by.  I explain the situation, show her the letter and wait.  She takes her time to read it – my whole history is summarised – and to her credit sympathises with our plight.  She explains that the ECGs suggest ‘acute infarction’ – heart attack.  No, no I say – it’s always like that – the fleconaide (pill-in-the-pocket) will sort it out.

“As a doctor, I can’t let you go home until your heart rate drops below 100bpm.”  As she walks back to the monitoring station, she says very quietly “You can always leave.”

I look at the monitor; my heart rate is up and down like an up and down thing that can’t keep still; 150bpm, 120bpm, 140bpm.  We decide that we don’t want to get the doctor into trouble – the fleconaide usually kicks in after an hour or so – so stay put.

Time drags on and I’m getting fed up stuck on a bed that’s too short.  Annie’s head is resting on the bed.  I fell guilty putting her through this yet again.  I look round at the monitor, willing my heart rate to fall.  Each time I turn my head it shows a different value – some times down, at other times back up.  The doctor comes back; “it went down to 95bpm.”   But when we look again it’s 130bpm.  Like one of Dr Who’s Angels, it moves when we’re not looking.

Then suddenly after about an hour and a half it stabilizes at 90bpm.  And it is sudden, surprising the doctor at the monitoring station; “I see the fleconaide has kicked in”.  She unplugs the ECG leads and gives me copies of the printouts.  The cannula is removed and we’re finally able to go home.  Just like that. 

It’s almost one o’clock by the time we’re in bed.  I feel fine, but it’s relatively short lived.

Next day I do a few chores then drive to Oxford for the CT scan.  In the evening I start to feel unwell; my resting heart rate rises to 98bpm and I’ve a pain in my upper left arm – like a ‘dead arm’ reminiscent of school days.  Waves of nausea come and go and I’m breathless climbing the stairs.  I sense something is wrong – my heartbeat is not ectopic nor is it tachycardic – but something’s not right.  I wonder whether or not to go back to A&E.  Annie trusts my judgement; “you know your body pretty well and if you say there’s something wrong, there usually is.”

I go through the options – and all the things playing on my mind:  It might be something to do with the CT scan; I felt weird afterwards, which was a first.  The consultant says my heart is basically sound – it’s the rhythm that is abnormal.  It’s not gone over 100bpm.  My risk of stroke is low.  I am extremely anxious about the hot spot in my abdomen.  It could actually be the hot spot or it could just be the worry.  I’m also anxious about the kitchen – we’re refitting – will the new fridge fit in the gap I’ve left?

It may all be in my head (and my head does feel funny).  Perhaps I’m making a fuss about nothing.  It’s a hard call, but I take the pill-in-the-pocket and go to bed with the proviso that if I still feel bad in half-an-hour I’ll go to A&E.  (I can imagine heart and stroke campaigners having a fit at this decision).

I fall asleep.  Annie apparently checks that I’m OK at various stages through the night.  My resting heart rate is back to normal by morning but I still feel unwell.  The arm pain gradually goes, but it’s three days before I am back to what I call normal.  So something was not quite right.

As far as cause and effect are concerned, I was eating an ice cream and watching a TV programme about the economic crisis when this all kicked off.  I’ll leave you to draw your own conclusions.

¹ See if the nurse comes in we’re doomed July 7th 2012
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A letter to my body

I’ve been avoiding you for ages.  It’s not you – it’s me.  (I know, they all say that).  I’m a bit squeamish, or rather, used to be.  But this letter is long overdue.  I want to say thank you.

The first time I looked at you properly, trying to take it all in – I kept thinking “you poor sod”.  It was a glance in a hospital mirror – my first unaccompanied excursion to the bathroom for a couple of weeks.  Now I look at you with a sense of wonder.  A history told in scars and subtle changes in shape.  The story has changed over these past six or so years and now, with another scan due, I wonder – what next?

I stare at you while cleaning my teeth.  What else am I going to do in the next two minutes?  The mirror is directly in front of the basin.  It’s hard to look away.

I start at the top.  It’s been 2 years now; there’s no scar to see (it’s across my back) but the left collarbone gives the game away.  It sits proud – the surrounding area has subsided leaving a deep depression, a sink hole bridged by this white arch.  I puff out my chest but only my right lung inflates.  The left seems reluctant to get involved; a little movement near the diaphragm just to show willing.  I was at a party a few weeks ago and a woman said; “your left shoulder is lower than your right”.  That’s the first time anyone’s mentioned it.  She didn’t mean it unkindly but it’s made me more self-conscious – on a recent holiday I slip in and out of the hotel pool when no one’s about.  You were not embarrassed – but I was.

I move the toothbrush and lower my gaze.  The ‘Mercedes Scar’ – a joke beloved of all liver surgeons.  It must be part of their training.  The large inverted ‘Y’ is now beginning to fade but there was a time when it was red and raw, the staples like a child’s drawing of a railway line.  I still marvel at how quickly the liver re-grew.

I shift my balance and lean against the bathroom wall, supporting myself with my left hand.  That always makes the chest look worse – like something from a freak show.  Just visible on the right hand side of my waist is a small scar.  We’re close now to where it all began, six years ago.  For nearly two years an ileostomy bag hung from this spot, a patient receptacle for all you could throw at it, while the wounds from that very first attempt to evict the unwanted visitor slowly healed.

The buzzer on my toothbrush sounds and this two-minute tour is up.  Writ large in the mirror is a bowel cancer road map, for those who can read the signs.  The steady progress North by an insidious traveller.

I’ve stopped feeling sorry for you.  You’re tough – much tougher than me.  I’m the one who has the doubts, the bad dreams, the tears.  You just get on with it.  You got me to work each day, and then got me up the stairs at night.  Slower now perhaps, but still plodding on, nevertheless.  While I lay awake worrying, you just tick-over.  And each night I’m left wondering the same thing; how do you do it?  You are amazing – thank you.

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thank you for the days; part 2

So now I’m retired; it’s been long anticipated¹ but when it finally comes, it comes quickly.  A last minute flurry of activity, then a pub lunch, hugs and handshakes and promises to keep in touch.  A momento, thoughtfully chosen, reminds me that ‘Work’ is not simply a place – it’s also people.

My desk is finally cleared and my email account closed.  As far as ‘the system’ is concerned, from Friday 31st August 2012, I no longer exist.

Annie also retires on this day and, like me, has mixed emotions.  Work has been a stable part of both our lives for a long time – whatever else we’ve had to contend with, it has always been there.  To be sure – it’s changed out of all recognition from when we both started, but it’s clothed and fed us and defined, to a large extent, who we are.  We’re on shifting sands now – and that’s both exciting and scary at the same time.

We begin our new life with a holiday as a means of drawing a line under the past, to stop once and for all, questions like ‘will we manage without work?’ – or rather – ‘will work manage without us?’

As we start to sort out suitcases and maps, any doubts I might have had are dispelled by one of those spooky moments in life when you think that someone or something has stuck their screwdriver in the cosmos and given it a little tweak; I open the The Guardian Weekend on Saturday September 1st to find this:

The Awful Truth, Stephen Collins

1 See thank you for the days, May 2nd 2012
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What he said – and what he wrote (or why do things always seem worse in black and white?)

He said; “there’s a hot spot in your belly … near your ribs”.

He wrote: (the hot spot is in) the … transverse colon.

He said; “we don’t know what it is ….. if it’s big enough to worry about it’ll show up on a CT scan”. 🙂

He wrote; (it) raises the possibility of residual/recurrent disease.

At the beginning of July we saw the oncologist for the results of the PET scan (we didn’t see the consultant this time, we saw one of his staff instead).  We were not entirely happy with the meeting – too many questions left unanswered.  A few days ago, I receive a copy of the doctor’s letter to my GP.  I show it to Annie; “this isn’t what he said”.  

How quickly life can change.  A few weeks ago we were happy as Larry – ecstatic sandboys had nothing on us.  To be sure, we knew this ‘hot spot’ would require our full attention sometime but we managed to park it to one side while we sang and made merry with all the other things going on in our life.  But seeing it in black and white somehow elevates it to a more worrying level.  The ‘blue skies from now on’¹ that Annie resolved to wallpaper her world with have now taken on a more sombre monochrome hue.

My response, as always, is to step over to the dark side and peer into the abyss.  I examine the worst possible case – that it is a tumour in my colon.  Options: Chemo? Not particularly effective with secondary tumours.  Radiotherapy? Possibly.  Surgery?  Depends on location – could chop it out but may need a bag (again).  Or just leave it and see what happens.

As if this is not enough, I move onto the other topic in the letter – the tubular enhancing structure.  He confirms that it’s a blood clot.  I have a blood clot?  Having blood clots, even if they are old and tired of the travelling life, is not ‘a good thing’.   So now I have something more to moan about.

I spend a good few days mulling all this over before my brain kicks in and says ‘sod this – life’s too short’.  I assume that’s what happens; all I know for sure is that I spend time worrying, getting more and more depressed (and grumpy).  Every ache and pain is subjected to forensic examination in case it could be ‘a sign’.  Then questions: Should I see my GP? Cancel all social engagements?  Sell my new guitar?  I try and hide all this from Annie but she can read me like a Kindle.  I, on the other hand can read her like an Egyptian hieroglyph. I know most of the symbols, but some still get lost in translation; “you’re worried about a pan?”  “No – I’m worried about Dan”².

This approach has been a characteristic of my dealings with cancer since the very beginning in December 2005.  I have to examine – wallow even – in the worst possible outcome before I can deal with it.  I worried about this at first, fearing I was becoming too melodramatic; now I allow myself this luxury – it’s a bit like an elite athlete visualising an event.  I have to take it all apart before I can make sense of it and put it back together.  It’s how I win.  (A welcome side effect of this technique is the ability to put IKEA furniture together without the instructions).   After a few days I wake up without a care in the world.  Larry is back.

I don’t know how this happens – I could simply be in denial.  Or perhaps I’m like one of the Martians in H. G. Wells’ War of the Worlds.  My conscious me is simply a vehicle – a mode of transport – and tucked away in my brain is a little creature who works all the controls and does all the driving.  And doesn’t always let on where we’re heading.

¹ See if the nurse comes in we’re doomed
² Annie’s youngest, Dan, is currently somewhere in South East Asia
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