road to nowhere

I walk down the road to nowhere for precisely 6 minutes.  Not ‘approximately’ – give or take a bit – but 6 minutes to the second.  This is not a stroll, a walk in the park with time to stand and stare; I’m on a mission.  This is science.

Walking by oneself can be a strange thing to do, often engendering a sense of self-consciousness, that doesn’t seem to happen when travelling, say, by car.  I recall that in a previous life I would sometimes walk to work.  Nods to people passing the other way would often be unacknowledged – as if lone walkers are objects of suspicion.  When I walked the dog the complete opposite would be true.  Strangers would smile, sometimes stopping to chat if the dog was being particularly cute (he could turn on the charm if he thought a treat might be forthcoming – much like his owner).  It’s as if the dog legitimised walking alone.

But I’m not alone, I’m being observed.

I had assumed that when the gym I mentioned in my previous post said that I’d need to do a 6-minute walk test to check my base level of fitness, I’d be doing this on a treadmill, wired up to various monitors.  The sort of thing you see in television programmes about people being wired up to machines while they pound away going nowhere in particular – except perhaps backwards if their concentration should slip.

But no – I’m having a real walk.  The main room in the gym is 25 metres from corner to corner, across the diagonal.  My job is to cross the room, backwards and forwards until called upon to stop.  At a given signal I set off at a brisk pace.  A nurse calls out as each minute passes.  On this signal another nurse hurries alongside me and without breaking my stride, slips an oxiometer onto my finger, thereby catching my oxygen saturation and heart rate as I walk.  All very low-tech but effective just the same.

I begin by counting laps to relieve the monotony, but the time goes surprisingly quickly and with the added challenge of sticking my finger out every so often without causing injury to myself or the nurse walking alongside, I soon lose count.  And then I’m done.  I actually enjoyed it – the sensation of walking in this way.  I mention this to the nurses and try to relate it to walking through the Milton Keynes shopping centre – which might well take 6 minutes or so.  But far less enjoyable.  “That’s because this floor is sprung – the shopping centre is solid marble which hurts your feet”.  Solid marble flooring?  The pension funds which financed the building of the shopping centre must have been pretty flush at the time.

After checking my blood pressure and heart rate I’m free to join the class, which has now assembled in the equipment room.

I’ve never been to a modern gym – the last one I set foot in had men in tights sporting waxed handlebar moustaches and brycleemed hair, lifting dumbbells and tossing Indian Clubs.  (I jest but you get my drift).

I am baffled by some of the equipment.  I choose an exercise bike (familiar), rowing machine (soon get the hang of it) a cross (or elliptical) trainer (a what?? – my co-ordination is rubbish and I begin the session by rotating the pedals backwards) and my bête noir – the treadmill.  Two large buttons immediately catch my eye – a tortoise (-) and a rabbit (+).  Hmm.  I give old rabbit (bear with me) a tentative press and then have to grab hold of the handles to stop myself flying backwards.  Apparently you’re not supposed to stand on the treadmill when you touch the rabbit.  After a few minutes of switching between tortoise and rabbit I get the hang of it.  But I don’t like it.  (Annie subsequently points out to me that it should be a hare not a rabbit – it looks like a rabbit to me).

After a warming down exercise we all sit around for a session of bicep curls and tricep extensions using a large rubber band.  I’m given a green one, which indicates average fitness.  I notice one red one (macho – or ‘I could be in a real gym’) and a beige one (oh dear – serious heart/lung problems).  We all then have a nice cup of tea while our heart rate and oxygen levels are measured.  My O2 is 97%, which is good, and my heart rate is 82bpm, which is OK having just spent an hour or so exercising.  I think I’m going to enjoy coming here.

And then Life does that thing that I find really annoying; you’re bumbling along, head down, not causing any mischief or discomfort to anyone else – just minding your own business – and as you turn a corner, Life sticks a foot out and you fall flat on your face.

It’s about 8pm; we’re enjoying a sociable evening watching a programme about Australian art – Dan (Annie’s youngest, home on an all too short visit from Oz while he waits for a visa to go back for a second year), Annie and myself.  There’s a knock on a metaphorical door; the Gods of Arrhythmia have come to call – and they’re not happy.

It starts with a few ectopics and I leave it a while; my heart rate fluctuates on each beat – 60, 90, 115, 125, 80, 60, 100 …. and so on.  I take the pill-in-the-pocket and settle down to wait.  After about an hour the ectopics cease, but my heart rate stabilizes at 125bpm.  Odd.  It should be lower.

I go to bed but no change.  I hate this feeling; like an old car brought to a sudden standstill.  I’m in neutral – I’m going nowhere, but the accelerator is stuck to the floor and the engine’s racing – screaming – and bits are starting to fall off (the imagined car, not me).

We pass an anxious night; although the pill-in-the-pocket has brought the heart back to a regular rhythm, it hasn’t lowered the rate.  It’s been over two years since I’ve been tachycardic for more than a few hours.  Last Christmas, I had an episode where the heart stayed at about 130bpm for about an hour or so before the p-i-p kicked in and things went back to normal.  Since then these high rates have been no more than blips – a couple of minutes at most before reverting to ectopic episodes that oscillate between 60 and 90 bpm.  I had begun to think that perhaps I was free of the tachycardia; I’d even gone as far as thinking that I might be able to reduce the p-i-p dosage if I was simply dealing with abnormal rhythms around the normal range.  Not yet, clearly.

Annie’s worried – she wants me to go to A&E.  I’m reluctant; I have no chest pains, breathlessness or symptoms of any sort other than a racing heart rate.  I reassure her that the drugs will do the trick, although my confidence is somewhat shaken – this is the first time the p-i-p has failed to reduce my heart rate.

At 7.00am when I take my morning dose of bisoprolol, I’m still struck on 120bpm.  By around 8.15 the bisoprolol has kicked in and my heart rate finally drops to 70 bpm.  I feel like a zombie and it takes me the rest of the day to recover.  And now as I sit and write this, some 24 hours later, my resting heart rate a high(ish) 87bpm.

I don’t get it.  If it was to do with the gym session, why did it take around 6 hours for the arrhythmia to occur?  And why, when the heart rate finally went back into a regular rhythm, did it do so at such a high rate?  A few weeks ago, I was wondering whether singing might prompt an arrhythmia.  Last week I had an impromptu rehearsal with my friend Neil.  I’d gone to help him with a recording project, but we were unable to finish it so we had a singsong instead.  No problems afterwards.

Following lung surgery I was diagnosed with Atrial Flutter and subsequently treated via Catheter Ablation in June 2011.  Although the Flutter was deemed ‘cured’, arrhythmias continued and I was subsequently diagnosed with Paroxysmal Atrial Fibrillation. Paroxysmal simply means ‘random – of no known cause’.  So perhaps I’m looking for a rational explanation when there isn’t one.  That’s something I find hard though – I am by nature, inquisitive.  Maybe this particular road really is going nowhere.

I have to go to the gym again.  There is so much evidence supporting the role of exercise in heart and lung rehabilitation.  I’ll change one variable though; I was hungry when I got home from the gym so I ended up eating more than usual at our evening meal.  So, next week – post-exercise snack and portion control.  And we’ll see what happens.

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With a song in my heart

During my visit to Birmingham last week, I mentioned that I’d heard about singing as therapy for damaged or diseased lungs.  The consultant was very positive about the whole idea.

Here’s the thing; to sing well, you need good breath control.  Good breath control comes from lungs that work properly.  Sing and your lungs get better.  And as your lungs improve your singing becomes easier.  A virtuous circle.

But what happens if you can’t sing (properly) and your lungs are damaged?  Can rehabilitation of the lungs help a dodgy voice?  This, I am about to find out.

In the dark days just before the lung resection, when I worried about the consequences of being deficient to the tune of one lung, I happened to read about a man who had his left lung removed and then went on to become a successful triathlete.  In what seems like a bizarre tale from late night TV but is really a testament to the amazing wonder that is the human body, the right lung, over a period of years, grew larger – expanded – and filled the cavity left by surgery.

I mentioned this to the cardiothoracic surgeon who was mulling over whether or not to go ahead with the operation.  He laughed; not in a funny ha ha or ‘that’s amazing, well I’m blowed…’ kind of way, but with a cruel and dismissive, ‘that’s about the most ridiculous thing I’ve ever heard’ type of put down; must be a pretty slow triathlon.”

I’ve since learnt to ignore negative comments from doctors; and let’s make no mistake – some are negative.  Perhaps unwittingly.  I guess that if they concentrate on the microscopic, it’s hard sometimes to see the whole organism.

So even though my new best friend in Birmingham tells all his patients with paralysed vocal cords that they won’t sing again, I take no offence; he can’t mean me.  I decide to investigate singing therapy.

Google quickly takes me to the Royal Brompton Hospital in London, which provides singing therapy for people with severe lung disease.  With great success, apparently.  Too far away though.  A few clicks later and I fetch up at the home page of the British Lung Foundation.  I discover, to my great surprise, that there’s an exercise class for people like me right here in my hometown.  But no ordinary exercise class.  This is not the village hall and ‘jumpers for goalposts’ stuff.  This is state of the art equipment, supervised by qualified healthcare personnel.  You can’t go near the equipment without someone checking your vital signs.  And – they’re even in the process of setting up a singing therapy group.

The key to the door of this palace of dreams is via a referral from the cardiology department at the local hospital or GP.  Hang on a minute; I’m a patient of said cardiology department.  And my GP has encouraged me to exercise to keep the fibrosis at bay.  I’m about to call Annie and go off on a rant as to why no one mentioned this to me before – I could have been doing this years ago ….. when my eye is drawn to the Blogroll on the right-hand side of this webpage.  Just about where you are now.  There it is – a link to the BLF website.  I’ve clearly been here before.  This is embarrassing.

No matter; having suitably chastised myself, I go along for a look round and begin the process of joining.  It’ll take a few weeks; referral, assessment, a 6 minute walk test and then hopefully I’ll be good to go.  In response to a question from the nurse on duty, I happen to mention a recent late night visit from the Gods of Arrhythmia; she’s a bit concerned.  Perhaps I should go to A&E?  Noooooo.

I understand the concern of healthcare staff, but I’ve lived with this for 3 years now.  The pill-in-the-pocket¹ deals with it in a very short time.  If I should get accompanying chest pains, then I’ll go to the hospital like a shot.

A couple of days ago I went to see my friend Neil (mandolin player in Fat Freddy’s Cat) for a jam session.  For those who are not musically inclined, we do not sit around labouring over fruit-based preserves, but make music instead.  It’s the first time I’ve done this in over a year.  My fingers are sore from lack of practice but my new(ish) guitar (second-hand last summer) sounds good and I manage to sing a few songs.  We resolve to ‘do it again’.

That night, around 1.00am I sense the familiar change in rhythm that signals an ectopic episode.  Then my heart races to 125bpm before dropping down to 80.  I leave it for a couple of minutes but it drops out of rhythm again so I take the pills and go to sleep.  This is the first tachycardic² episode this year.  The previous one was at Christmas.  I’ve had a few arrhythmias of late – episodes of ectopic heartbeats during the night – but none where my heart rate has risen above 100bpm.  Until now.

I recall that something like this has happened before.  I mention it to my live-in mathematician; co-incidence?  Possibly – possibly not.  Checking back in my diary I discover that we had two rehearsals last summer and then played a gig.  Each of these events was followed by an arrhythmia.  So that’s now four serious attempts at making music and four tachycadic arrhythmias.

She-who-dances-with-equations comes off the fence; this is no coincidence; “were you nervous?”  Yes I guess I was.  “adrenalin rush?”  A surge of adrenalin can certainly elevate heart rate.  But why would it happen a few hours later and not at the time? Singing is strenuous – I have to take a break after a couple of songs.  But nothing like as strenuous as shifting a cubic metre of gravel from the front of my house to the back, which I did last week.  It took 30 wheelbarrow loads – and a couple of days to accomplish – but apart from sore arms and shoulders, I felt no ill-effects.

So what’s going on here?  When I sing on my own – no problem.  When I sing with others – heart b-b-b-beat.  Can it be that simple?  Can singing with other people trigger an arrhythmia?  In the interests of medical science, I need to do more research.  Which means more jam sessions and more gigs.  This sort of thing:


Unless the Gods of Arrhythmia are trying to tell me something.

¹ Flecanaide 150mg, to be taken as needed.
² Tachycardia; when the resting heart rate is above 100bpm
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raise or fold?

“I wish there was some quick fix I could offer you ….”  I’ve already guessed that there wouldn’t be.

We’re in Birmingham, at the Last Chance Saloon for voice ops.  The consultant is affable, asks questions and takes plenty of notes.  Then a squirt of something numbing up my right nostril and the camera’s on its way.  I make various sounds, which cause the vocal cords to move in particular ways.  When he plays the recording back I can see that the edge of the damaged cord is not straight when it meets its more mobile neighbour – there’s a slight bulge.  This means that the cords do not completely close, resulting in a croaky/rasping/breathy (take your pick) sound.   The bulge is the result of too much stuff having been injected.  No one’s fault.  Trauma during the procedure causes the cord to swell, so it’s nigh on impossible to predict where it will end up once the swelling has gone down.

There is only one surgical option – to undergo a difficult and risky operation (under a general anaesthetic) to try and REMOVE (yes – that’s right) some of the filling from my paralysed vocal cord.  There are no guarantees and it could make things worse.  I liken this to wobbly table syndrome; one leg is longer than the others so you take a bit off.  Chances are it’ll end up being shorter than the rest.

It’s all about chance.

My current reading is a Louis L’Amour novel – an old fashioned shoot’em up western.  The hero, a laconic loner is ‘a philosophisin’ on his predicament – surrounded by four baddies and nowhere to run.  All Louis L’Amour heroes tend to philosophise on their particular predicaments in the same way – by reference to games of chance.  Usually involving cards.  So there’s talk of percentages, knowing the odds and so on.  The hero only makes his move when he’s run the various scenarios through his head, skilfully predicting which way his opponents are going to react.  If only life were that simple.

With a bit of nudging, my predicament could be likened to a game of cards.  Do I take a chance and hope that an operation to remove some of the filling does not make things worse, or do I quit and live with what I have?

Where the analogy with games of chance falls down is that there are no percentages for this situation.  A deck of 52 cards can only be dealt a finite number of ways; a lot mind you, but a calculable number none the less.  Whilst there are only three outcomes for this new voice operation – it makes it better, it makes it worse or it stays the same – they’re not equally likely.  Indeed, they’re not quantifiable in any way whatsoever.

We can probably discount one of the outcomes; I think it reasonable to assume that another operation is very unlikely to leave things as they were before.  So we’re left with 2 outcomes – it’ll either make it better or it’ll make it worse.  But it’s still not going to be 50:50.  I can’t just toss a coin and say heads we do it, tails we don’t.

By the way – if you’re wondering what happened to the hero in the book – he’s rescued when one of the baddies turns out to be distant kin.  The odds have now changed from 1 against 4 to 2 against 3.  There’s a standoff while calculations are made as to how many of the bad guys will get shot if they attempt to shoot the good guys.  Having done the sums to the satisfaction of all parties, the bad guys decide not to risk it and ride away.

And so to my own standoff.  The consultant lays his cards on the table; “I always tell singers who have paralysed vocal cords that it’s unlikely they’ll sing again”.  But he’s willing to do the procedure to try and remove some of the filling if I wish.  There’s a lot to consider – he needs more information from Mr ENT in MK and I need to think about the  risks.  He’ll leave it to me to decide.

“It’s your call, stranger – raise or fold”.

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a hippocratic oaf?

I don’t usually bother with the local paper.  I can’t seem to stop its delivery and so it usually goes straight to recycling without even a cursory glance.  But today ….

Interspersed between the stories about muggings, the local MP visiting yet another primary school and Man with Van adverts, is a photograph of a face I recognise.  It takes me a while because the context is unfamiliar, the headline unexpected.  And shocking: ‘Hospital tells patients not to worry’.  It’s a bit like one of those big red buttons, which says ‘don’t press’.  Who can resist?  So worry I did.

The reason for this “don’t panic, don’t panic”¹ flap is the suspension of the colorectal surgeon who operated on me in 2006.  It would appear that he is the subject of complaints and legal action from a number of patients.  There is no detail about the nature of the complaints – the story apparently broke while we were in Australia; today’s article focuses on the fact that he is still drawing a full salary while having been suspended for two years.

I don’t know what the paper is more concerned about; the fact that he has been suspended or the fact that he is still drawing a salary.  And I don’t really know what I think about it either.

I had a very good relationship with him when I was being treated for the original tumour in my bowel.  No complaints, except for one thing.  He took a risk.  I know this because the Bag Lady (stoma nurse) told me; “he didn’t leave himself a safety net…..”

The original plan was for me to have a stoma – an opening on the right-hand side of my stomach so that my small intestine could drain into a bag while the surgery on my large intestine healed.  It’s a bit like by-passing the central heating system with a length of hosepipe, while a new radiator is fitted.  I would need to wear such a bag for about a year.

When I came round from the operation, there was no bag.  The tumour had been cut out and my internal pipework reconnected in such a way that the surgeon had deemed a stoma unnecessary.  Everything was hunky dory and I would be home within 5 days.  Two nights later, my stomach began to swell and I was in pain.  Five days later I had an emergency ileostomy; it appears the joint had burst.  I had blood poisoning and spent the next 10 days in intensive care.  It was 28 days before I was able to go home.  It was also 18 months before I had an operation to reverse the ileostomy and remove the bag.

It would be wrong of me to start thumping the table about this; I was overjoyed at the prospect of not having to deal with a stoma.  My initial reaction to the news that one would be necessary was along the lines of “oh well – it was worth a try”.  It was only later that I realised that this could have turned out far worse.  By then I was dealing with the day-to-day consequences of having a bag stuck to my stomach.  (Consequence No. 1 being that it didn’t always stick and leakage was a persistent problem).  It never really occurred to me that this was not a risk worth taking.  So I don’t think I’ll be calling Screwemm and Runn.  (Other personal injury lawyers are available).

The only surgeon I have ever really had doubts about was the one who removed the tumour on my lung.  Even now I wonder if the outcome (the collateral damage to heart and voice) might have been different if I’d waited a few weeks for the return from holiday of the (more senior) surgeon originally slated to perform the operation.  Possibly.  Probably?

We always knew that the position of the tumour meant that the operation would be difficult.  Afterwards, he put his hands up to the collateral damage with a big smile saying it was the only way of removing the tumour in its entirety.  However, he hadn’t.  Not only that – and this is the bit that still rankles with Annie – he knew he hadn’t and didn’t tell us.  We sat in his consulting room while he fobbed us off.   Annie knows about these things – 30-odd years of dealing with naughty boys (and girls) means she can spot a fobber a mile off.  And which is why, in the end, the radiotherapy was so invasive and debilitating.  It may or may not be significant that he has since failed to reply to any of the oncologist’s queries about the procedure and the outcome.

Hindsight is, of course, wonderful and ultimately a waste of time.  I cannot change the outcome for me.  And I cannot know that it would be different.  I can only say to others who might read this – if you find yourself in this position, question your doctor.   Check to see if they measure up to the original yardstick that all doctors are assumed to abide by.  According to wikipedia, while around 98% of American medical students swear some form of Hippocratic Oath, only 50% of British medical students do.

Here’s an extract;

“And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice, I will keep them.”²

From what we’ve heard in the past few days about some NHS Trusts, it would be fair comment to argue that they’ve failed this particular test – particularly the latter part about harm and injustice.   The principles of the Hippocratic Oath surely have a wider relevance than the final year of a medical degree.

Just who is to blame for this state of affairs is a game politicians like to play.  In the grand scheme of things, I have little to complain about.  I’m still here.  Minus a few bits, perhaps, but still here.

¹ See Dad’s Army.
² Hippocrates (or one of his students) 5th Century BC.
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great expectations

There’s an envelope with a Birmingham postmark on the mat.  I can just make out through the address window, where the letter inside has been folded, the word ‘latipsoh’.  Quicker than Hercule Poirot can say “little grey cells” I deduce from the two clues – postmark and ‘hospital’ backwards – that this is the letter I’ve been hoping for from the Birmingham voice clinic.  Unless it is some cruel prank from a backwards letter writer whom I may have offended in a previous life.

Sure enough, they have offered me an appointment in August.  This is sooner than I expected, just 3 months from when I last saw Mr ENT.  My expectations of this encounter are high – but it has its risks.  Suppose it doesn’t work?

I mention to people who ask, that I just want a chance to talk to someone about the voice.  If they can do something, then great – if not at least I’ll know and I can stop banging on about it.  I say this in a relaxed, laid back way, which suggests I’m comfortable with either outcome.  The truth however, is quite the opposite.

If they tell me that there is nothing that can be done and this is as good as it gets, then I am going to be disappointed.  For the past three years I have let myself believe that – with a bit of luck – I can go back to the way things were, before the lung resection.  That I can just walk up to the microphone and carry on from where I left off – as if the intervening time was no more than the usual 20 minute break between sets.  But the experience of trying to get back on the bike should have spelt out clearly in capital letters that THINGS ARE NEVER GOING TO BE THE SAME AGAIN. Doh!

I met up with an old friend a few weeks ago and she asked how I spend my time now that I’m retired; what do I do each day?  I recited a litany of things  – some creative, others mundane – that I engage with.   Or rather, could engage with if I got my act together.  It occurs to me much later, that what really takes up my time is simply surviving.  That is the 9.00 to 5.00 job, the rest is just frippery.  Not a career move I’d have come up with by choice, but one that I now have to do to the best of my ability.  No one wants to become an ex-cancer survivor.

Anyone who’s been through this awful disease will tell you that surviving is hard work. More often than not, we look fine on the outside, a picture of health – no hint of what lies beneath the surface – a chaos of sutured organs held together by the medical equivalent of duct tape and zip ties.  Some of us will appear to breeze through this on autopilot, others will struggle, burdened down with discomfort and fear, like a latter-day Pilgrim¹.

And now I sound like Miss Haversham²; the naïve sense of optimism and good fortune that has got me thus far, replaced by brooding melancholy and bitterness with all my clocks stuck at 4.45pm³.  Although to be fair, I have not let myself go in the hair and clothes department to the same extent as Miss H did.  OK – so perhaps my jeans are now M&S ‘relaxed fit’ rather than Levi red tabs – but I am not sitting around in a 30-year-old tatty white wedding dress, wearing only one shoe watching the wedding cake gradually disintegrate; (plot spoiler alert – apologies if you’ve not read Great Expectations).

Annie has, on her iPhone, a recording I made over 20 years ago with my friend Alan.  I’m singing and Alan’s playing a Steinway grand piano.  Though I say myself – it does sound pretty good.  She wants to play it at the clinic in Birmingham, and say something like ‘make him sound like that again’.  This though, is an expectation just a little too great.

I know Annie is concerned that I am dwelling more on what I can’t do, rather than what I can do; she’s right of course and so I take advantage of the sunshine/lack of rain to help her in the garden.  She points out that the peonies we’ve just planted need some water.  I’m puzzled; we’ve not planted peonies.  She tries again; “You know – primroses”.  Another blank.  I catch her mumbling – she’s working her way through a song, like someone who can only read by saying the words out loud.  “Petunias!”  Ah petunias.  They do indeed need watering.

This happens every time that she forgets the name of this brightly coloured annual, much favoured for summer bedding displays and hanging baskets.  I ask how she arrived at the correct name.  “That old song – you know”.  I do now.  Like an old decrepit jukebox, the synapses in my brain eventually make the connection, pick out a recording by Tommy Cooper from 1961 and plonk it down on the turntable.  The crucial line is “Mother’s just planted Petunias”.  And now it’s in my head and I can’t get rid of it.  Which is why, with a breathtaking lack of good taste, we find ourselves sitting in the garden shed on Father’s Day singing “Don’t jump off the roof Dad.”  I wonder if they know it in Birmingham.

¹ for example, The Pilgrim’s Progress by John Bunyan, 1678
² Great Expectations by Charles Dickens, 1860-61
³ this is the moment I went under the lung surgeon’s knife (25th July 2010)
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a bloody nuisance

I hate warfarin.  I know… what’s warfarin ever done to me to provoke such a reaction?  Hate is such an extreme emotion.  Some psychologists would have us believe that Hate is the same as Love.  And there are plenty of tales where the hero/heroine hates the heroine/hero to begin with, only to fall in love later.

OK – so I’m unlikely to fall in love with warfarin at some future date as I gaze at the packet of pills across the counter at my local pharmacy.  Perhaps hate is too strong.  But I dislike it utterly and completely.  It is a bloody nuisance.  And I use that adjective, not as an expletive, but in its proper vascular sense.

I’m at the GP’s surgery for a blood test.  My INR¹ has increased somewhat from its regular therapeutic value so I’m now having blood tests every 2 weeks instead of monthly.  The nurse cannot find a vein in either arm.  She stabs me first in the left; “sharp scratch” – yeah right.  The needle is stuck.  She withdraws it.  Nothing; not a squirt.  She tries the right.  Same thing.  She tries my left hand; there are lots of nerves in the hand and she manages to find one, along with the vein.  I try not to wince but she notices.  She then explains that they’ll soon have a new machine to take INR samples from a fingertip much like the test for diabetes.

That’s the ‘nuisance’ part.  The ‘bloody’ part is more insidious.

I’ve not been able to get out much on my bike (at all, if truth be known) over the winter.  So I built a bike out of bits from fleabay and other Internet auction sites, to attach to a turbo trainer so that I could pedal away in the comfort of my own home.  I made it into a racing bike rather than a ‘sit-up and beg’ by using drop handlebars.  This was done in a vain attempt to recapture my lost youth.  In fact I went a bit further back in time, and ended up using shallow drops in the style of the original Victorian/Edwardian ‘scorchers’, because I’m not as supple as I used to be.

a scorcher

a scorcher

This style of handlebar is very fashionable right now with young urban cyclists.

me and the lads, Preston Park, circa 1906

me and the lads, circa 1906

The saddle is higher than the bars which means a good deal of my upper body weight rests on my hands.  After a few test rides, my body begins to accept this radical change in posture and I no longer ache around my neck and shoulders.  But I notice bruising on my hands and arms.  In fact after one such ride a bruise forms on my left arm from my wrist to very near my elbow.  My forearm is purple and yellow.   I was wearing a wristwatch at the time and I assume the watch, or rather the strap, to be significant – perhaps trapping any blood flow and forcing it to the surface?   If warfarin can do this to the skin, what on earth can it do deep inside?

I know the answer to this one.  Two years ago, in my early days with warfarin, I had internal bleeding to the extent that I was forced to undergo the most embarrassing and painful examination known to man (any man, that is)².  The consensus was that it was caused either by warfarin or cancer of the bladder.  So I had a cystoscopy to rule out cancer.  Thankfully.

The surgery rings around teatime with my latest results.  This is unusual; it’s normally the day after the blood test.  My INR is 5.00.  This means my blood now takes roughly 5 times longer to clot than that of someone who’s not taking the stuff.  Good for preventing strokes, but not so good if I have to shave.  So I have to miss two doses (i.e. the next two days) and then reduce the dose and have further blood tests every week until my INR drops back down.

A few weeks ago I couldn’t remember if I’d taken a dose or not.  I usually take it around the same time each day – 5.00pm.  But on this occasion I just couldn’t remember.  Later that night I assumed I hadn’t, so I took one just in case.  This is not a good idea.  Better to miss a dose than take too much.  Annie reminds me that this is not the first time I’ve done this.  So now I have to keep a book and write down each time I take a pill and the dose.  Which is what is known, in medical terms, as a bloody nuisance.

¹ INR; international normalised ratio.  The rate at which blood clots when on warfarin compared with the rate for a non-warfarin person.  The higher the number, the longer it takes to clot – which is a bad thing.
² See a man’s gotta do what a man’s gotta do October 12th 2011
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I went to the doctor and the doctor said …

…. yeah but no but yeah but no but …….

What he actually said was; “I’ve think we’re at the limit of what we can do here.  I have no problem referring you to Birmingham.  I’d be interested to see what they can do.”

So – Mr ENT is going to refer me to another ENT department – one that specializes in treating professional singers.  He is surprisingly (to me) supportive of my wish for a singing voice again – or even the chance to discuss the possibilities of further treatment (or not).  My speaking voice has improved dramatically over the past few weeks – perhaps all that Australian sunshine made a difference.  My singing voice is lagging behind though – there is some improvement but it’s slight compared with speaking.

Mr ENT has a new camera but it has a few teething problems.  I was supposed to be at this clinic before going to Australia (seems a long time ago now…) but they cancelled owing to ‘equipment malfunction’.  There’s now a technician sitting outside the consulting room door – he comes in, makes a few adjustments and leaves.  We start – and stop again.  Enter technician, twiddle, twiddle, and we’re good to go again.

The old camera was pushed up my nose – not altogether unpleasant once the numbing effect of the banana-flavoured sedative had taken effect – but this one goes straight in the front door.  I feel it probing the back of my throat (no sedative this time).  This new camera (or rather, camera system – there’s a new monitor as well) allows recording and playback of the images and after having a good poke around, Mr ENT invites me to watch the screen.  My left vocal cord looks white and fat – and moribund – like a contented maggot asleep on a sunbed.  (I know that might sound gross, but that’s what it looks like.)  As I utter a stream of ‘Es’ the right cord wriggles over to join it.  They meet and slam shut, pretty effectively, all things considered.  The ‘posterior chink’¹ still refuses to close, but this is something that Birmingham might be able to sort out.

I had expected a battle over the referral because I thought there might be a little professional pride at stake (there was none) and because it might seem a trivial request in the grand scheme of things.  Back in 2011 when I was first trying to juggle the conflicting priorities of the cardiology unit and the ENT unit, a cardiologist had commented that restoring my voice was a “lifestyle thing”.  Meaning that it was not life-threatening and therefore not important.  It did not command the respect, resources and time that sorting out the heart did.  This may be true – but only to a point.  Having no voice is misery.  Full stop.  Full glottal stop.

But Mr ENT understands totally and so – we wait and see.  It will probably take months, but that’s OK.  It’s not cancer.

Which by happenstance is what this morning’s post from Oxford suggests.  It’s my copy of a letter to my GP.  It doesn’t matter what people actually say – the message always carries more weight when it’s set down in back and white.  Whatever the news.

…..Since his last review here six months ago he has been very well and reports no constitutional symptoms of note.  His appetite is good and he reports no weight loss and his main issue is that his exercise tolerance has been limited by his cardiac issues and his pneumonitis post-radiotherapy.
He had an up-to-date scan on 17th April 2013 which was compared with his October imaging.  This shows no evidence of any recurrence of his disease.  This is most pleasing.  I have informed Mr Spratley of the results and that we would like to see him back in six month’s time with an up-to-date CT of thorax, abdomen and pelvis for review…..  

I love ‘This is most pleasing’ – as if Jane Austen had written to my GP: ‘Dear Dr D’Arcy, we find the absence of disease most pleasing.’

I feel like I’ve gone back in time to 2008 (or possibly 1808).  I was fully recovered from the bowel resection, the liver resection, chemotherapy and the removal of the awful ileostomy bag.  We took our bikes to Spain and France that summer and assumed that we would ride off into the sunset.  And when I wasn’t riding my bike, I was singing in a band.  

Of course at that stage I was not deficient in the breathing department to the tune of one lung.  And my heart was far from dickey.  (Oh no – sounds like a song title coming up…).  We didn’t know, couldn’t know, that the sunset would turn out to be a cliff.

But – in spite of the ‘limited exercise tolerance’ I feel better than I have done in ages; both physically and mentally.  It seems like progress.  Which is weird when you think about it – that going back in time is progress?

¹ See Posterior Chink, April 23rd 2012
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If the nurse comes in … part 3

I’m getting stressed – every single car park, and there are five at the Churchill in Oxford, is full.  Not just full, cars are queuing, backed up round the ring road.  We do a circuit but it’s hopeless.  I’ve never seen it like this before.  In the end I join others and park on the grass verge.  If I get a ticket or a wheel clamp, then so be it.  Today my mind is on other things.

It’s usually a long wait.  We pass the time either in companionable sniggering or silence, lost in our own thoughts.  Today my mind has gone walkabout and taken me to ‘aging’.  I feel I’ve aged – what? – about 7 years since I first got sucked into CancerWorld.  Which is uncanny given it’s been 7-odd years ….

What I mean is that in my head I am still 58.  And fit and healthy.  While there are advantages to this state of mind – positive thinking and all that – there is a downside.  I have a tendency to make plans that my body has no intention of going along with.  In fact it would probably run a mile at the very thought of some schemes that I dream up.  If it could run a mile, that is.  I’m planning a trip to the Pyrenees in September.  With bike.  Three flights of stairs is about my limit right now – so just what makes me think I can get up a mountain, I have no idea.  Although I did climb a 200 step tower (or 222 steps as a 9-year old pointed out as he raced past) in the Australian Bush – at 35°C – with only 3 stops to catch my breath.

We’ve just laid a new wooden floor in our sitting room.  I say we.   I give the orders and helpfully point out where they’re going wrong, while Annie and a builder friend do the easy bit.  But prior to this I decided it would be a good idea to bury TV cables, the phone cable and sundry other cables, under the old floor before laying the new one, in the interests of neatness.   It took me all day to do something that should really have taken no more than a couple of hours at best.   I could hardly walk the next day – all the squatting and levering away at 40-year old nails, stuck in 40-year old joists having reduced my quads to jelly.

I can’t decide if this is simply old age creeping up (Doctor: “You’re not as young as you used to be”), or if it’s the effect of cancer treatment.  Given that in my head at least, I’m living 7 years in the past, I like to think that it’s simply the cancer treatment.  I’m not ready for the alternative.  Besides – old age is no place for sissies¹.

I lean across to Annie and say, “ I’m feeling a bit past it”.  “Past it? – You’ve never even been level with it.”  She laughs and repeats herself just to make sure I hear.

People who know my wife will testify that her sense of humour is straightforward and uncomplicated.  While she enjoys the sophisticated wordplay of people like Eddie Izzard and Bill Bailey, her favourite joke – the one guaranteed to have her rolling on the floor, tears streaming, her children a picture of silent distain and embarrassment as if to say “are we really related to this woman?” – is ….

…. in fact the unfunniest, most miserable person in the world could tell this joke and she’d be in convulsions – like in From Russia with Love when Rosa Klebb is interrogating James Bond;

Rosa Klebb “Now Mr Bond, I will ask you one more time – what’s brown and sticky?” 

James Bond “I tell you I don’t know”  

Rosa Klebb “ A stick.  Ha ha ha ha ha ha ha”      

James Bond “Damn you…”

At this point the audience gasp in horror at James Bond’s inability to deliver the punch-line, as they realise his future as a straight man is clearly over.  But Annie is rolling in the aisles, holding her sides…..

…… where was I?

Of all the jokes in all the world – including those in Christmas Crackers yet to be pulled – my wife regards the ‘brown stick’ joke as the apotheosis of comedy.  This is the daddy – nothing can surpass it.  Perhaps her vocation – teaching Maths – is partly to blame.  Most teachers I know are a bit odd.

She caused a scene recently in the Art Gallery of Western Australia in Perth when an exhibit caught her eye.  Grabbing my arm, pulling me towards it, all the while pointing, pointing – stabbing the air in excitement as if she couldn’t quite believe such a thing possible.  Her favourite joke – for years nothing more than a mental construct – has suddenly taken material form.

what's brown and sticky?

what’s brown and sticky?

The only other thing I can imagine having a similar effect is James Taylor calling her on stage while he sings just for her.  I get a glimpse of my wife as a teenager.  And realise that, perhaps, this is what art galleries are for.

She’s not unsympathetic to my sense of years passing – but she does come down on the side of the doctor; “You’re not as young as you used to be.”  I tell her that I feel better than I have done in ages – it’s just the sudden exhaustion and tiredness that comes over me when I do anything physical that I find frustrating – and confusing.  And I explain about the Pyrenees – what was I thinking?  She smiles;  “We can always look at them from the bottom.”

She then brings me back to the here and now with a bump; “you could be dead. Mr S (lung surgeon) could have left you to die.  When he was deciding to operate or not – I saw it cross his mind.”  She delivers this brutal recollection in a matter of fact way, as if we’d been talking about pruning the roses.  “I can say this now – I couldn’t then.”

And she’s right of course – I’d forgotten.  We’d sat in the surgeon’s office on a hot stuffy day while he made up his mind; he explained that because of the location of the tumour it was probably too difficult to remove and I had to argue that I was willing to take the risk.  He even phoned a friend for a second opinion.

She rests her hand on my arm; “even if you have lie on the sofa for half a day, it’s still better than the alternative”.  I ponder on this until my name is called.

Which it is – and much sooner than expected.  No checking my weight first.  Odd.  It’s a young doctor and there’s no nurse.  As we walk down the corridor to the consulting room I’m thinking this must be good, but I can’t catch Annie’s eye.  He gets to the point straightaway; “there’s no sign of the disease on your scan”.  The hot spot in my abdomen appears to be shrinking.  Still no clear idea what it is, but it’s going the right way.  We have a very brief chat about my general health and then I’m on my way, with an appointment for another scan in October.  That must be the shortest consultation ever.  On the way out Annie grabs my arm, “I’m clicking my heels..” ²

As we walk to the car, the ring road is still backed up.  No ticket or clamp, just a dirty look from someone queuing to get into a car park.  Annie doesn’t care; “another 6 months of freedom, yay”.  It’s almost 3 years to the day since we discovered the tumour in my lung.  And I’m still alive.  Yay.

¹Attributed to Bette Davis, but quoted by many others.
² See if the nurse comes in we’re doomed, part 2, October 19th 2012.
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and it’s goodnight from Oz

People keep asking us “what single thing do you like most”.  Our answers are the same; “waking up to a blue sky”.  I don’t think we could ever tire of that.

We take lots of photos; lots and lots.  Here’s an arty one that Annie took of some kangaroos.

arty kangaroos

arty kangaroos

And here’s one I took from the top of a research tower out in the bush.  The country is flat for hundreds of miles.

the bush from 200 feet

the bush from 200 feet (quite a lot of bushes, actually)

Mary and Glyn have three children and six grandchildren so Annie has met her six great-nieces and great-nephews for the first time (ranging in age from 1 to 11years).  Being a ‘great’ auntie makes her sound old; but one conversation confirms just how ancient we really are.  Her 11-year-old great-niece is impressed by Annie’s array of Apple technologies (iPad, iPhone, MacBook); Annie mentions that she also has an iPod Nano at home.  The girl asks what an iPad Nano is; her 9-year-old brother explains (with a serious look on his face); “it’s what they had in the olden days before iPod touch.”

I’ve felt really well here; just one nocturnal visit from the Gods of Arrhythmia and not a single crackle from my left lung.  My voice is strong.  The eruptions on my forehead have all gone – my skin is as smooth as a really smooth thing and I’ve not needed the heavy-duty ointment that my GP prescribed.  Ladies may be interested to know that the skin on Annie’s elbows is also smooth – prior to coming here you could have filed your way out of a prison cell with them.  She attributes this to the climate – specifically the lack of central heating.

We’re both dreading going back to the cold.  Although, as Einstein might have said, had he turned his hand to thinking about climate rather than time, temperature is relative.  We’re bemused by slogans we see in the Perth shops; ‘say yay to scarf weather’, ‘say yay to coat weather’.  It seems as soon as the temperature drops below 20°C people put on their hats and gloves and coats.  It’s hard to get my head round the fact that it’s Autumn here – soon to be Winter.  It’s still in the 30s during the day, although it cools in the evening.

It’s not just the cold that makes us apprehensive; it’s the return to CancerWorld.  We tend to treat holidays like commando raids – get in, do what we have to do and get out again with the minimum of casualties.  So we fit them in between major hospital appointments and hope that nothing goes wrong while we’re away.

I’m due a scan as soon as we get back to check on the progress (or not) of this ‘hot spot’ in my abdomen.  We’ve both managed to park it for a few weeks, but now we have to think about it again.  That’s just the way it is with cancer; you can chug along for a while as happy as Larry (or perhaps Thomas the Tank Engine, as I’m in a railway mood) and then every so often, you bump into the Fat Controller and head off to the engine shed for a spell of whatever happens in engine sheds.

Travel in general, and flying in particular, can do strange things to the human body.  The cabin in an aircraft is pressurized to around 8000 feet – about the same height above sea level as the Grand Canyon (which caused us so much trouble last year¹).  It’s a compromise – if the cabin pressure at 40,000 feet was the same as that at sea-level, then the plane would have to be much stronger (and therefore heavier) and would probably never get off the ground.

At 8000 feet gases in the body expand by around 20%.  Especially those in the digestive system.  So travel clearly not only broadens the mind – it also broadens the waistline.  It also affects gases in our blood stream and organs.  Last year, on our return from America, Annie’s left leg became so swollen that she ended up with a visit to the local hospital.  Which is why we purchased a pair of those rather unflattering flight stockings prior to this trip.

At around 3.00pm on Sunday 7th April we’re paddling once more in the Indian Ocean, three weeks to the day – to the hour – since we first did this.  In a few hours time we’ll leave for home.  Annie asks if we should go into hiding now or on the way to the airport.  It makes me wonder what would happen if we just stayed.  I could sit in the sun, looking at the ocean as I am just now; I guess my pension would still be paid every month (although I would forgo the winter heating allowance); BUT…..  (and it’s a very big but)….  I’d have to pay my own medical bills.  And cancer doesn’t come cheap.  Thank goodness for the NHS.  (I assume we still have an NHS?)

I’m reminded of the novel, So much for that by Lionel Shriver.  Set in America, it tells the story of a man who dreams of retiring to an island in the sun.  It’s his big passion, the one thing that keeps him going in a job he hates.  But his wife has cancer.  And it’s not too long before their health insurance is unable to cover any more treatment and they are forced to dip into their ‘island in the sun’ savings. Each chapter starts with a diminishing bank statement.  I won’t spoil the plot, other than to say it’s a good read and spells out the difficult choices that those with cancer – or rather – their carers often have to make.  (I think you’ll like the ending though).

We’ve really liked Australia (or the small part of it that we’ve seen).  Perhaps more so than we expected to.  Here’s Perth from King’s Park just after dusk.  It’s a popular place – people get married up here, party or simply take a picnic and watch the sun go down on their city.

Perth skyline from KIng's Park

Perth skyline from King’s Park

We’ve loved walking on deserted beaches and sitting in the bars and cafes (particularly in Fremantle) just chilling and watching the world go by.  In spite of various warnings, we’ve not come across anything that wants to eat us.  Perhaps the biggest surprise of this trip is that until now, I’ve never really known envy.

It’s not the big flash houses with their roof-top swimming pools looking out on to the ocean, or the guy in the bar singing and playing guitar in a way that I can only dream about, that is the cause of this.  It’s not Annie’s niece with her pool and out-door dining room.   Nor my brother-in-law with his Kawasaki motorcycle and Mazda MX5 sports car (OK – perhaps a bit).

What gives my tan a greenish tint is a man about my age, dressed in lycra.  I see him everyday whizzing along the ocean road in the sun on his shiny carbon road bike.  Everyday.  In the sun.  By the ocean.  Now that really does make me jealous.

1 See When Mother Earth met Father Sun, June 18th 2012
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the wizard of Oz

Friday 15th March, 3.00pm.  I’m cold.  The house is freezing, the weather’s miserable and I hear on the news that the odds on a white Easter have shortened.

Sunday 17th March, 3.00pm.  I’m warm.  I’m standing in the Indian Ocean, waves lapping round my feet.  We’ve travelled in a matter of hours, a journey that would have taken our forebears weeks or months to achieve.  This surely is Magic.  If that sounds too fanciful it is, at the very least, amazing.

us in the sun

us in the Indian Ocean

It’s about 7 on Sunday morning by the time we finally clear customs and immigration and find Annie’s sister, Mary and husband Glyn, waiting for us.  It’s an emotional reunion for the two sisters.  Outside, as we make our way to the car, it’s already warm.  The sky is blue and I’m momentarily dazzled by the unfamiliar golden orb in the sky.  The drive from the airport to their house takes us past the ocean.  Alongside the road is a paved area and it’s packed with walkers, runners and cyclists.  The M25 has nothing on this.  The more impatient roadies, with their stream-lined helmets and carbon framed bikes, clog the road.  There seems to be hundreds of them.  Is it a race?  Can’t see any numbers so just assume this is confirmation of the image we have of the Australian life style – sports mad – and living by the sea.

The houses alongside the ocean are extraordinary – enormous glass and steel structures making the most of the view.  Every single one could feature in an episode of Grand Designs.   This is what happens when Chinese industry meets Australian ore.

An hour later, we’re sitting on M&G’s front porch, shorts and tee shirts, (I did wonder if I might ever wear such things again) drinking coffee and watching an exotic bird feeding from an exotic flower.  CancerWorld seems a million miles away.

Later that day we drive a few miles up the coast to a picnic area for a barbecue.  It’s a bit like an Antipodean version of Alice in Wonderland.  A herd? (party?) (flock?) of Kangaroos play on the grass; the birds are all the wrong colour and their songs are nothing like those at home.  For us Brits brought up on books and television programmes about Australia, there is though, a familiarity about the unfamiliar.  Until we see it in the flesh.  I think about the early visitors to this place and wonder what they made of it.

There’s a special enclosure a short distance from the picnic site and the light is starting to fade as we wander along an elevated, fenced off, walkway.  Then we see it – asleep high in a tree, a Koala bear.

We’ve been in the country for less than 12 hours and we’ve had the full Australia package – a paddle in the ocean, a bbq, kangaroos and koalas.  I tell Glyn we can go home now, we’ve done it all.  “You haven’t heard the banjo frog”¹I assume this to be a wind up – frogs playing the banjo?  Or an aussie variation of the anti-banjo jokes so beloved by British musicians; e.g., definition of a banjo with perfect pitch – when you can toss it in a skip without touching the sides.  That sort of thing.  But no; as we walk back to the car I hear a  strange metallic ‘bonk’ – like the plucking of a string.  It’s not the theme from Deliverance – but it would not be out of place on Britain’s got talent.  I decide it might pay to be somewhat respectful towards this creature; it has, apparently, poisonous glands in its thighs.  Unlike their human counterparts who only inflict pain with sound.  (With apologies to banjo players everywhere).

It’s day three and I’m sitting on M&G’s front porch as I write this.  About a mile away, through a gap in the trees, I can see the Indian Ocean.  The house is a modest bungalow, surrounded by modest bungalows.  Immediately in front is a park – a playground for children, surrounded by well-manicured grass, planted with what look like well-manicured trees.  People jog or walk their dogs while others ride their bikes.  It’s clean and neat; the people are clean and neat.   There are three predominant colours in this landscape; the blue of the sky, the green of the grass and trees and the pinkish-red of the paths and roadways.  I keep thinking I’ve seen it all before and it eventually dawns on me that this could be the film set from The Truman Show.  Or how a developer – or a child – might picture their ideal town.

Like all communities there must be a darkside.  We hear what have become universal stories about young people and drugs and the latest local fear, a white van that is snatching dogs for illicit fighting.  I give Milo, M&G’s chocolate labrador, a reassuring look when I hear this.  Right now, it’s hard to imagine anything bad happening here.  It’s as if someone has lifted a corner of the artificial lawns that seem to front the new housing developments and swept it all out of sight.

I’m under the spell of this place.  The wizard has done his stuff.  If things had been different I could have been quite happy here.  What’s not to like?  I know there are downsides – it’s too hot (and getting hotter) in summer, it’s a long way from friends and family (and John Lewis says Annie) and there are things in the sea that want to eat us.  But the lifestyle appeals; we pass a hoarding advertising a new housing development; ‘surf at 7, work at 8, that’s what life’s all about’.  Annie’s youngest, Dan, currently working in Melbourne, wants to stay.  I can see why.

I can’t help thinking that the Judiciary, back in the 18th and 19th centuries got the whole transportation thing wrong.  Instead of sending the bad guys off to to Australia, they should have said “we sentence you to stay here in the cold and the rain – the rest of us are off to live in the sun”.

¹ Western Banjo Frog; Limnodynastes dorsalis
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