My friend Grace is a bit taken aback when she hears me speak for the first time since the voice procedure.  I’m much cheered by her response – it’s hard for me to judge sometimes.  I can hear a difference, but I can’t easily judge how much of one.

I’m also surprised by Grace’s response because I am not hearing what she hears.  I don’t think I sound like I used to.  I wish now that I’d recorded my voice before and after each procedure; that would have been the scientific way.

This I do know; I can speak without running out of breath.  And I can – dare I say it – sing.  Well – a bit.  This is not a voice that you would pay good money to hear.  I discover this ability in the shower one morning.  Although I’ve managed to ‘sing’ a few times before, it’s different this time.  No running out of breath after each word.  I call Annie to come and hear; she runs from the kitchen and listens with tears in her eyes, the onion peeler still in her hands.

It’s still a bit croaky or raspy – I find I have to clear my throat a lot.  And it’s not loud or strong.  It fades if I increase the volume.  Or speak at length.  So while conversation has become easier, something more demanding, like a long detailed explanation, has not.  A new career as an orator is clearly out of the question.

My friend Neil (from Fat Freddy’s Cat) phones to check on progress; he too is pleased to hear me.  Rehearsals beckon.  I explain that it’s early days as far as singing is concerned.  He’s very encouraging; “But you always sing in tune – that shouldn’t be affected”.  Hmm – I’m not so sure.  My current attempts are sometimes flat – notes miss their target.  It feels out of my control – I know the note I want to hit, but the one I hear is not it.  I don’t know if this is something that can be re-learned or just comes back naturally.  And then today, as if to remind me just who is in charge, my singing voice disappears.  Nothing – not a peep.  I’m not unduly worried.  I assume it’s just having a bad day and that it will return.  It just reinforces the feeling that life has become totally unpredictable.

I’m due to see Mr ENT in two weeks for a post-procedure review.  This has added importance since I was out of it for most of the time and so I’ve no real idea of what he actually did.  I will tell him about my vocal dexterity in the shower.  What he’ll make of it, I’m not sure.  The first time we met he was confident about speech – “I can give you a speaking voice” – but as far as singing is concerned, he was much like me – silent.  I don’t expect him to offer another injection or thyroplasty¹ (which was something we did discuss at one stage).  But I do want advice and guidance on how best to preserve or even improve upon what I currently have.

From time to time I look back at some of the earlier entries in this Blog.  It’s a handy reminder of times when I thought my world had ended – but clearly hadn’t.  Things go bad – and then they get better.  But good and bad can be relative.  It’s a bit like living in a lift, where the ground floor is never in the same place.  You can go up and down just fine – but you never end up back where you started.  I don’t know if I’ll ever be able to sing in public again – and perhaps, in the end, that’s not important.  But singing with friends is.  I’ll be happy if the lift stops at that floor.

The day starts early – Annie drops me off at the hospital at 7.00am.  Although I like her to be there when it’s all over, I prefer to go in on my own.  The long walk through the corridors to the admission ward gives me time to get into ‘patient’ mode.

There’s a new system in place at the hospital.  My bed will be in the Ambulatory Care Unit (ACU) – it’s meant for people who can walk into an operating theatre rather than having to be wheeled in.  But admission takes place in another ward – the Same Day Admission Unit (SDAU); I’ll be processed here, walk into theatre and then wake up or come round in ACU.

The SDAU is bizarre – no beds; just eight chairs where beds once stood.  They’re sensible chairs too – high back, wooden arms – the sort that you see on afternoon TV adverts for people who need to be helped from the sitting position.

An aside; Annie thinks I’m showing my age with some of my metaphors and analogies.  “Who watches afternoon TV?”  Better still;  “Who remembers the Hovis advert?” (See; reality check number 2).  So I try it out on a 40-year old.  Over her head.  OK – I’m getting old.

The new arrangement throws me – a bed is an essential part of my preparation for patient mode.  If I lay on my back with my head raised and bring my knees up for a makeshift book rest, I can lie reading for hours, successfully avoiding eye-contact with my fellow inmates.

But a chair thrusts me into the room – there is no avoiding other people when you have to sit upright facing them.

The chair is the only concession to a modernising approach to admission.  There are still gowns waiting to be worn and curtains to be drawn.  Although the curtain offers some privacy – you may not be able to see what is happening to your neighbour – you can still hear the litany:  Name, DOB and ailment.

Opposite is a 21-year old who no longer has a right knee thanks to rugby.   He came in using crutches which may be stretching Ambulatory Care a bit.  On my left, a man a few years younger than me.  He cannot dress himself.  I stop reading when I hear this.  At first, I cannot imagine being that helpless – being that dependent upon other people.  And then a 50 year-old memory drifts back – my Dad couldn’t dress himself either.  Although I never forget the fact of it, I’d forgotten the mechanics of the day to day until I hear this man describe his routine.

As I listen I’m struck by an alternative interpretation of ‘a trouble shared is a trouble halved’.  The general idea is that by telling someone else that you’re having a bad time, you get it off your chest and you feel better.  Although more often that not, sharing a problem with someone else means both of you now feel bad.

But in this ward (and countless like it) a group of strangers are thrown together for no other reason than each has an ailment of some sort.  Simply being here means we are sharing our troubles – whether we want to or not.  After listening to the others I know I can’t complain – when the time comes to go home I will dress myself and walk out of the hospital without the need of a stick.

The chair offers no respite from discomfort – clearly the expectation is a short stay before theatre.  After a couple of hours I try another technique; I imagine sitting in an aircraft seat and seeing how far I might fly.

It’s just after midday when they come for me; apart from the odd comfort break I’ve been sitting here for 5 hours.  I could be touching down in Cyprus.

It doesn’t bode well; the anaesthetist doesn’t know my history.  He’s unsure how much sedation to give.  I need to be awake to speak to Mr ENT when he places the injection so he can check how far the vocal cord needs to move.  But I need enough to take the edge off things so they can get on with their work and not worry about me.

He doesn’t know about the reduced lung capacity or the heart drugs.  He goes off to consult some three times, returning after each discussion to update me.  It’s hard for me to be relaxed when he’s not.  In the event, he gives me too much.  “This may sting” is an understatement; it burns.  I have virtually no recollection of the procedure and spend over an hour in the recovery unit before the bed in ACU.

It’s around 5.00pm by the time that Mr ENT comes to see me.  My throat is sore and my neck is sore but he agrees that I can go home in the evening; “Rest it as much as you can and I’ll see you in about 4 weeks.”  I manage a sincere “thank you”.

A nurse removes the cannula and I get dressed.  I’m sitting on the edge of the bed staring at the floor and I’m aware of pools of red liquid at my feet.  I’m still a bit slow on the uptake and I eventually reach down and touch it.  Only when I realise that it’s blood do I notice the dressing from the cannula is leaking.  I wander round to the nurses’ station.  “Are you on Warfarin?”  “No – aspirin”.  “Right – I want you to hold your hand up above your head”.

So I stand in the middle of the busy ward providing a ready distraction from jacket potato with grated cheese followed by apple crumble and custard.  The dressing is changed.  A nurse takes my hand – and holding it above my head, walks me back to my bed.  We could be Nureyev and Fonteyn about to dance the Pas des Deux from Swan Lake.  Or – if you’re under 40 – some couple from Strictly Come Dancing.

Annie comes to collect me around 7.00pm.  I’ve been here 12 hours.  I could be in the Seychelles by now.  Outside, as she fumbles for change for the car park, I face the icy blast of a British winter instead of the balmy heat of the Indian Ocean.

It’s been over a week now and the voice is still holding up.  I can speak for more than 7 seconds without running out of breath.  I count out loud to 30.  I tend to speak quietly – I don’t want to risk straining it.  It’s fine when it’s just the two of us, but at work it starts to fade as I inevitably raise my voice to be heard above the voices of others.  Every now and then it goes AWOL.  I can’t work out why – cold weather?  A lack of oomph in my lungs?  But it always seems to find its way home.  It’s not the same as the original – but it is an improvement over the gasping, wheezing apology that was version 2.

I have more nocturnal visits from the Gods of Arrhythmia.  The first is very strange – I sense it long before my pulse confirms it.  I keep thinking I’m imagining it.  Like when you dream you’re falling and suddenly wake.  I check my pulse but it’s fine.  A few moments later it happens again – this time it’s ectopic.  Not especially fast and the rhythm seems steady – but it misses every third or fourth beat.  I try deep breathing for a while but to no avail.  So I take a pill.

Last night I woke with a pounding heart – it seemed really fast but the pulse meter showed 80bpm.  They’re messing with my head: Those whom the Gods would destroy, they first make mad¹.  I need to get out more; perhaps I should sit in A&E in the middle of the night with an ECG and share my troubles.

I’m shocked that so much time has passed and so quickly.  Of course I know it was a year ago – but it doesn’t seem like a year ago.  Not until I see it written down in black and white.  I feel as if I’ve been parked in a lay-by on a busy road – people are flashing by on their way to making music and I’m sat here quietly finishing my flask of coffee and the rather nice sandwiches that Annie’s made – hoping for a break in the traffic, so I can get back on the road.

This time though, I try to be nonplussed about the whole thing.  If it works, it works.  If it doesn’t, it doesn’t.  Am I bovvered?

But first, I have to deal with another reality check.  Following on from my recent cardiology check-up, I begin weaning myself off bisoprolol (beta blocker) by taking half a pill every day for a week then half a pill every other day for a further week.  The first day without a pill is not a success.  My heart rate hovers around 105bpm all day.  I feel lethargic and just want to doze on the sofa.  Which is rather inconvenient at work.  When I get home I take half a pill and it calms down.

A resting heart rate of more than 100bpm is known in the trade as tachycardia.  And tachycardia is an example of arrhythmia. I can’t help thinking I’ve upset the Gods of Heart Arrhythmia by meddling with my pills.  Perhaps this is just a temporary setback – a consequence of suddenly missing a dose.  Or have I simply tried to take myself off this drug too soon?  A letter from the cardiologist complements me on my ‘rather nice chart’ and confirms that as my heart was ‘quiescent’ when he saw me, he’s happy for me to try.

Panic sets in; I’m just days away from the voice procedure.  I sailed through the pre-treatment assessment; heart rate was a steady 70bpm and I explained that I would be finished with bisoprolol by the time I had the procedure.  Oops.

I see my GP for some advice.  He asks whose idea it was; I stick my hand up.  He’s unequivocal – I should continue taking the bisoprolol but he prescribes a lower dose to try and deal with the side-effects.  He thinks it too soon to live drug free.  He senses my disappointment; “your heart muscle needs some help – but don’t let it spoil your everyday life”.  Wise words my friend, wise words indeed.

And then, a few days later, as if to underline the precarious nature of the assumptions we make about ourselves and about our lives, I’m woken at ten minutes past one in the morning by my heart exploding.  My heartbeat is fast and irregular.  Someone is playing the drums.  Badly.  Or building a shed while skate-boarding down that cobbled hill they use to feature in the Hovis adverts (“he were a great baker were our Dad..”).

My pulse meter registers 132bpm and I feel very unwell.  I’m supposed to go to A&E when this happens and get an ECG but I can’t face it right now.  I find the pill-in-the-pocket (Flecainide 150mg) and hope for the best.  It’s a full-blown, all singing and dancing arrhythmia, although I can’t tell if it’s Atrial Flutter or Atrial Fibrillation – without an ECG it’s impossible to know for sure.  I do know I’ve not experienced anything like this since February 2011 (see February 2011).

After about an hour my heart rate drops to 98bpm.  It’s still unsteady but I manage to drop off and by morning it’s regular again, although still a bit fast.  I decide to revert to the original dose of bisoprolol, at least until after the voice procedure.  I don’t want to mess with the Gods again.

Although the P-in-P is clearly effective at bringing the arrhythmia under control in a matter of hours, three days later I’m still dealing with the consequences.  I am breathless, lethargic, nauseous – just generally bleeaauurgh.  And my voice has dropped to a whisper.  Annie phones the GP; I’m very lucky to have a GP who is willing to talk on the phone.

He is, as ever, helpful and reassuring.  He’s not surprised that I’m feeling so bad – “I’d expect that after such an episode”.  He explains that we have to see the tachycardia and arrhythmia as separate issues.  Not easy given that the former is an example of the latter.  The bisoprolol is designed to deal with the tachycardia and bring the heart rate back down to a safer level.  The P-in-P is designed to deal with the arrhythmia and bring the heart back to a steady rhythm (and correct the rate if it’s too fast).  Suddenly the light dawns and it all makes sense.  The P-in-P is, in effect, a chemical cardio-version.

So – what now?  I know what is going on – but I don’t know why it’s happening.  I can’t decide if this is simply coincidence or a direct consequence of changing my drug regime.  My GP thinks it coincidence; and he advocates continuing with the lower dose of bisoprolol rather than reverting back to the original.  The higher dose, among other things, lowers the blood pressure which can make things worse.

Finding the correct dose to balance the consequences of tachycardia with the unpleasant side-effects of the drug is critical and is, because it depends on the individual, all too often a bit hit and miss.  It’s like trying to fine tune a distant radio station through a hail of static – to find the ‘sweet spot’ where reception is perfect, with no hint of interference – using a tuning knob the size of a pinhead while wearing boxing gloves.

Annie relays the final part of their conversation; “try not to worry; it will take a few days to settle back down”.

It takes more than a few days.  I have another nocturnal visitation from the Gods of Arrhythmia (hmm – now there’s a name for a band).   This time it’s just tachycardia (ha – just …).  I lie on my back and breathe slowly and deeply.  The Gods must be bored because my heart rate drops back down.

I have to flick a switch in my head and become more realistic about the voice and the heart.  This thing is not going away quietly.  I have to become a grown-up; no tantrums, no “it’s soooooooooooo unfair…”

Small voice; “But it is”. 

Grown up voice; “Stop it”.

And it’s messed up my ‘rather nice chart’ good and proper.

]]> http://theprodigaltumour.wordpress.com/2012/02/01/reality-check-number-2/feed/ 1 ians05 arrhythmia 2 http://theprodigaltumour.wordpress.com/2012/01/23/reality-cheque/ http://theprodigaltumour.wordpress.com/2012/01/23/reality-cheque/#comments Mon, 23 Jan 2012 16:50:11 +0000 ians http://theprodigaltumour.wordpress.com/?p=596 Continue reading →]]> A small town in Oxfordshire; it’s Saturday afternoon.  A car pulls into the car park of a large DIY store and parks well away from any others.  Moments later another car arrives and parks next to the first.  The drivers glance at each other and nod; although they’ve never met or even spoken to each other, the rendezvous is acknowledged.

Driver 1 gets out and moves to the rear of Car 1.  Driver 2 moves to the rear of Car 2.  Driver 1 takes something from his car and places it in the back of Car 2.  Driver 2 hands over an envelope.  Driver 1 quickly checks the contents and pockets the envelope.  A few niceties, a handshake and business is complete.  They get into their respective vehicles and leave.  Car 1 heads East, Car 2 heads West.  They will never meet again.

I have, with great reluctance and after a lot of thought, sold my road bike.  This was the bike I ordered from my hospital bed in June 2010 – my reward to myself for getting through lung surgery intact.  Or rather, what I though was intact at the time.  And why not?  Three days after surgery I was, to the amazement and delight of the doctors, riding an exercise bike.  “You’ll be back on your bike in 6-8 weeks”.  Such high hopes.  That was before the heart decided to stamp its feet and before we knew that the tumour had not gone quietly.  The ‘seedlings’ it left behind needed intensive radiotherapy and it was this that did for my full recovery rather than the surgery.

According to my bike computer I have ridden just 16.9 miles on this bike since June 2010.  Annie has this thing about clothes – if she gets £1 per wear out of it she can justify (to herself, not me) putting it in the charity bag (also known as Emma’s wardrobe).  So if a coat costs £100 and she wears it 100 times, she’s reached her target of £1/wear.  At least that’s the theory.  And like all theories – it’s great in theory.

I try applying this model to the bike – and quickly give up.  Current running costs (pence/mile) are 10 times greater than an Aston Martin DB9¹.

And it’s not really a suitable candidate for an electric motor.  Quite apart from how it might look – and let’s not dismiss looks – no one wants to be seen on a carthorse when they own a thoroughbred – the lightweight frame and in particular, the slender carbon forks might not cope with the forces generated by a heavy rotating motor.  Carbon is strong – they make aircraft wings out of it – but it doesn’t bend like metal.  Carbon failure, when it occurs, is catastrophic.  I do not want to end up on the deck when forks and motor suddenly part company at speed.

I don’t have a spreadsheet for this.  But I do have a coffee and a think.  Time to get realistic – my road bike is just not going to earn its keep.  So I may as well sell it and take the money.  Once I make the decision it all happens very quickly; an advert placed on a bike forum and it’s gone in two days.  A couple of emails exchanged, a rendezvous arranged and that’s it.  He gets a nice bike, I get a reality cheque.

Him; “When was your last arrhythmia?”  Me; “November 13^th.   I have a graph if you’re interested”.  He is – and I hand over a rather scruffy diagram.  “This is very interesting – do you mind if I keep it?”  I do, but acquiesce – if I’d know he’d have wanted to keep it I’d have produced a neater version – like the one below.  I didn’t even give it a title.  Annie says you have to give a graph a title – it’s The Law.   

The diagram shows eight incidences of arrhythmia (that I’m aware of) since I had the ablation back in June.  The vertical axis shows duration of each episode in hours, the horizontal axis shows time.  The first episode, a week after the ablation, lasted around 36 hours.  Since then they’ve gradually come down.  At the onset of the last one I took the Pill-in-the Pocket¹, which probably accounts for the shorter duration – around 2 hours.

Number 4 is interesting; day 48 with a duration of around 12 hours. This one occurred while I happened to be wearing a 7-day heart monitor, so there is a very clear picture of what was going on; as well as 26 separate incidences of ectopic heart beat, the monitor recorded four separate episodes of Atrial Fibrillation (very rapid heart beats).

It’s now day 201.  It’s been 53 days since that 2-hour blip.  Is it too much to hope that I’ve seen the end of this?   He’s not sure.  The purpose of the catheter ablation was to try and cure Atrial Flutter.  Which it may have done; the fact that fibrillation has shown up is a complication – but not an unusual one after flutter ablation.

I ask if I can stop taking the beta-blockers; he agrees and I’m weaned off with half a pill for 7 days, then half a pill every other day for a further week.  After that I’m flying by the seat of my pants.

I ask about the aspirin in light of the latest research suggesting it may be doing more harm than good.²  He hasn’t seen the report, but admits that he’s not convinced about aspirin as an anti-coagulant.  He’s a warfarin man.  But we don’t want to go back down that particular road again.  He consults my notes; “you’re at low risk of a stroke – although that will significantly increase when you’re 65”.  What – overnight?  I’m glad Annie’s not here.  She’d have pounced on that and it wouldn’t have been fair on the poor man.

He agrees to review the aspirin in 6 months time.  In the meantime, if I have another episode he asks me to forget the P-in-P and go straight to A&E for an ECG.  The nature of the arrhythmia – flutter or fibrillation – will determine what happens next.

I’m quite encouraged by all this.  It would be nice to put a tick against the ticker.  Time will tell.

1 Flecainide 150mg

2 BBC news; Routine aspirin ‘may cause harm’, 9^th January 2012

For some, Dylan had committed heresy; the electric guitar would mean the end of the troubadour.  No more introspection, no more poetry, no more mournful stories of hopeless love.

The reality is quite different.  Even the most theatrical Heavy Metal band will find time in their set to “change the mood” and come over all romantic and sentimental, as they play the now compulsory ‘acoustic number’.  Some of the band will leave the stage; the drummer may stay and fashion a simple rhythm from a wooden box.  The bass player may dust off an old acoustic upright.  And the lead singer – instead of biting the heads off chickens – will sing, perhaps, of a fondly remembered puppy (I’m guessing here.  Could also be girlfriend or mother).

The audience too will join in the mood, solemnly waving lighters or mobile phones.  For a few brief moments in the middle of the gig, singer and audience are bound by mutual reminiscence – a serene filling in a mayhem sandwich.

Dylan had seen the future.  Not everyone shared that vision, but there was no going back.  The future was electric.

Now consider this; Google ‘electric bicycle’ and you will eventually wander into an world of dissent every bit as hostile and passionate as the Manchester Free Trade Hall on that May night in 1966.  This time the cries are “disability scooters”, “granny machines” and “fat, lazy people not having to pedal.” The debate even has its own Judas moment, a heartfelt display of betrayal; “It’s fundamentally NOT a bicycle”.

I realize that simply reproducing these quotes does little to convey the anger that some people feel about this issue.  As in the case of Dylan, the anger is directed at both the new technology and the people who might be drawn to it.  Anger is often a front for fear.  Perhaps the thought of being overtaken by a free-wheeling fat, lazy, disabled granny on a machine that looks, to all intents and purposes, like a bicycle is just too much for some MAMILs[1] to bear.

I dipped my toe in this particular murky pool because on my very first bike ride of the New Year I felt like the Christmas turkey – well and truly stuffed.  Annie waits patiently at the top of each hill, but it’s galling to realise that I can no longer keep up with her.  My reign as long-term winner of the Tour de Milton Keynes is over.

OK – hauling Christmas pudding and too many mince pies around clearly has an effect – but there’s more to it than that.  One (and a bit) lung simply does not work as well as two.  I’ve been at this for some 12 months now and I’m stuck – I’ve reached a plateau.  No more improvement.  This is the light bulb moment.  I need some extra Watts.  A bike with a knob on it that goes all the way to eleven.[2]

What the naysayers forget is that this is all about hope.  The mere contemplation of such an idea changes my mood entirely.  I’m not ready to hang up my cycle clips yet.  I dare to think – to hope – that perhaps I could keep up with Annie.  That perhaps I could wear Lycra again.

No sooner do I mention this than she’s out the door and on her way to the bike shop.  It’s not a simple as that.  These things are not cheap.  A decent electric bike can cost as much as a small second-hand car.  And you need a decent one because, if and when the battery fails, you still have to get home on something that you’d be hard pushed to even lift off the ground.

The alternative is a conversion kit – to make an electric version of an already decent bike (and I have a few of those).  A lot cheaper, but still much to consider and much research to be done.  Websites have to be visited, brochures have to be read, calculations have to be made.  The process has to be savoured.  It starts with switching on the coffee machine.  As I call her back she sighs;  “You’re going to do a spreadsheet aren’t you?”

She sets me a challenge; there’s a charity bike ride in August around the hills of Oxfordshire.  Last year I watched as she and our friend Sally completed the gruelling course.  This year I’ll whizz past them – providing I complete my spreadsheet in time.

I make my New Year’s revolution.  2012 will be the year I go electric.  Happy New Year Bob.

Christopher Hitchens (1949-2011)

Sometimes I’m torn; to celebrate means being thankful for love and support.  It means acknowledging that it’s good to be alive – that all the minor problems, which bug our everyday lives, don’t amount to hill of beans.  On the other hand, it means drawing attention to it, making a fuss, a big deal.  I just want a quiet life.  Normality.

December 16^th 2010 was always going to be a significant date.  I had it writ large in my diary: Special Day[1] Number 5.  For anyone touched by cancer, the 5^th anniversary of diagnosis holds special meaning.

I was diagnosed with advanced bowel cancer (Dukes Stage D) on December 16^th 2005.  Like most people in this situation my first thought was “what are my chances?”  I could find 1-year and 3-year survival rates, but that was about it.  I phoned a UK cancer charity and asked for some numbers; “We don’t tend to publish the 5 year survival rate for advanced bowel cancer”.  Why not?  “Most people don’t survive that long”.  After a lot of digging around on various websites I found what I was looking for; the 5-year survival rate was around 5%.  We didn’t need Charles Dickens back in December 2005.  We had our own Ghost of Christmas Yet to Come.

Given the return of the Prodigal Tumour in April 2010, Special Day Number 5 became even more important and we celebrated with cheers and tears and a glass or two of fizz.  Now that the excitement’s died down a bit, things will be a bit more low-key this year and we’ll probably just have a nice cup of tea.

Looking back over the past 6 years I’ve come up with an organ hit parade – my very own Top of the Chops.  If you’re going to have bowel cancer, this may help.  Or not.

In at number three is the lung.  Difficult to remove without upsetting the neighbours – the heart and vocal nerves tend to get mangled.  And the pace of life slows down afterwards – get used to coming last.

At number two is the bowel itself.  Easy to remove, but messy.  May need alternative plumbing arrangements.  These can be temporary or permanent.  Plenty of people with bags under their Lycra.

At number one – the organ of choice for removal – the liver.  Easy access, staples out in 10 days and then it conveniently re-grows all by itself.  You’d never know, apart from the Mercedes scar.   And the empty bottles of blood outside the operating theatre.

As I’m now living with the consequences of No. 3, I have (finally) started using a lung-training device (finally, because it was given to me by a colleague a year ago) in order to rehabilitate my lungs.  I read something recently by a COPD[2] nurse, which made me think; “coping with COPD … is like training for a marathon”.  I need to take lung damage seriously.

The lung trainer is a T-shaped plastic device a little larger than an asthma inhaler.  At one end is a mouthpiece, at the other, an adjustable valve.  As I breathe in the valve acts as a resistance to my effort – exhaling releases it.  I can increase the tension, thereby increasing the resistance, making it harder to inhale.  This in turn strengthens the inspirator muscles, which control breathing.

If I do 30 repetitions, twice a day I’ll notice a difference ‘… in just 4 to 6 weeks’.  This reminds me of those Charles Atlas adverts on the back of magazines and newspapers for a postal course of isometric exercises guaranteed to ‘stop bullies kicking sand in your face’.  Well Charles Atlas – I completed your course; now send me the muscles.

The Power-Breathe has 10 increments for adjustment.  The lowest resistance, which I start on, is much like holding a mirror to the mouth of a corpse.  It simply detects signs of life.  This does not seem right.  It appears I’ve unscrewed it too far.  Correctly adjusted I suck in, the valve activates and my lungs slam shut like a paper bag evacuated by someone who has successfully completed the Charles Atlas course.

I log onto the company website and discover that my particular model (the red one) is for athletes and has the highest resistance.  I find the wimps model (turquoise) and take comfort from the fact that, instead of positive reviews from Iron Men/Women and Marathon runners, there are positive reviews from COPD patients, AF suffers and people who are just getting a bit past it.  Scrolling down the list of happy puffers throws up more hallelujahs than a revivalist’s meeting.  One COPD patient even throws away his portable O² cylinder.

Even with the correct model, getting into a training regime is not easy.  I am just not a gym person.  Annie, in a previous life, was an aerobics instructor.  Give her some leg warmers, a room with a big mirror and an iPod and she’s in her element.

We’ve turned our spare room into a home gym.  This was done originally to help me recover from bowel surgery.  It has a big mirror and a set of iPod speakers (I draw the line at leg warmers).  So it should be easy.  It’s certainly convenient.

Annie sets herself targets.  She will often do a session in the gym after a 10-mile bike ride.  She strives for continuous improvement – all with a smile on her face.  She really loves it.  I, on the other hand do not.  My ‘target’ is to use it more than once a year.  I think it goes back to school days and PE.  I hated PE – running around in a vest and shorts being shouted at by an ex-Army sadist left deep scars.  I cannot bear to look at a vest even today.

The one thing I could always do was ride a bike.  So in preparation for lung surgery it was no hardship to go out and do 20 miles before breakfast.  Besides the fun, I felt a connection with my childhood heroes.  My friends wanted to by Billy Wright (captain of Wolverhampton Wanders and England, married to a Beverly Sister, thus starting the trend of Sports/Showbiz marriages.)  I wanted to be Jacques Anquetil (5 times winner of the Tour de France).  His approach to training -“pheasant, champagne and a good woman” - was lost on me as a schoolboy, but he looked a bit like James Dean on a bike and therefore, cool.  Before we really knew what the word meant.

Now things have changed; what was once no hardship and fun is completely the opposite.  Annie has to drag me – nag me – to get out on the bike.  Even Lycra has lost its appeal.   I do it solely to keep the pnuemonitis at bay.  I cycle to work whenever I can.  Going is easy – even in bad weather.  Coming home is hard though; uphill and against prevailing winds.  I guess there is progress of sorts; it doesn’t seem to get any easier and the effort always hurts but my recovery time has shortened.  Like the man says; pain is temporary; quitting is forever (Lance Armstrong).

Some days though, and for reasons I cannot explain, I take a big step backwards.  There is no obvious sign that something is amiss until it happens.  Then my chest is in a vice and my breathing is laboured; moving – even thinking – seems to take place in slow-motion.  I refer to these as my ‘bad days’.  But they don’t last long.  Perhaps my body just wants a day off every now and then.

I’ve opened up another front in my war on pneumonitis by having singing lessons – or rather – breathing lessons.  Just half-an-hour a week, but it’s a start.  I tell my teacher that I’m not expecting miracles.  “It’s good that you’re realistic”. We start with the diaphragm.  “In and drop – out and squeeze”.  I immediately get this wrong; ‘in and out – drop and squeeze’.  I should be pushing my diaphragm down each time I inhale.  What this means in practice is that my stomach distends to the extent that I could easily pass for someone who has spent a lifetime drinking 12 pints of Heavy each night.

Then as I exhale I bring my diaphragm in and squeeze every last drop of air through my grateful vocal cords.  “Your diaphragm is your best friend”.  It’s surprisingly hard work and I can see it’s going to take a while for my new best friend and me to get acquainted.  I need to practice and I find the mantra in and drop – out and squeeze playing in my head as I stand in the coffee queue at work; it’s grotesque.  I’m going to get arrested.

Then a song; she suggests ‘Smile (though your heart is aching…)’ – it has a fairly limited range.  I should take a breath at the end of each phrase, but I’m gasping at the end of each word.  My teacher makes encouraging noises; “there’s still a voice in there somewhere”.  Although quite where ‘somewhere’ is, is unclear.  It’s probably dark and damp, its inhabitants enjoying a quiet night in, until disturbed by the out of control vibrations of a flabby, yet plucky, vocal cord.

Back home, with the guitar, is no better.  I can’t get through a Fat Freddy number yet.  Except in the shower.  Which doesn’t really do a lot for cedar and mahogany.  I’ll give it a few months (the lessons, that is).  I realise that singing is a metaphor for life and I’m just not ready to give up on it yet.

Three of us from Fat Freddy’s Cat recently got together to hold a wake for our one-time accordion player, Steve Hollier.  The date was chosen to coincide with a celebration of his life being held in his most recent home, Azerbaijan.  We play some songs and, by the miracle of modern technology, we’re seen and heard by his wife Sandra and his friends in Baku.  The connection lasts long enough to share a few memories.

At the very same time as we’re saying goodbye to an old friend, Annie’s son and daughter-in-law are getting to know their godson at his christening.  It’s tempting to imbue this coincidence with cosmic significance, but we manage to avoid singing the Circle of Life in the car on the way home.  We do mention it though.  Quite a lot.

This notion of ‘life as a series of circles’ allows a shameless segue into another topic.  My 28-day heart arrhythmia was due on 11^th December.  Note the paste tense.  It’s late.  I get to midnight on the 11^th.  Annie’s still awake; “you’ve made it”.  Now what?  I don’t sleep well, tossing and turning, trying to find a position where I won’t feel a pulse.  They’re everywhere.  I swear before I had lung surgery that my heart did not beat at all.

I have an appointment with the cardiologist at MK in a couple of weeks.  Do I show him my graph, with its 5 evenly-spaced points?  And what of the 6^th?  If it’s late, or decides not to show at all, it’s going to make my theory look pretty silly[3].  I guess all great scientists have to grapple with this one.         

No one has ever mentioned the ‘R’ word.  Perhaps it’s just as well. There’s a lot of confusion out there.  Someone said to me the other day; “one more year and I’m in remission”.  I nodded encouragingly, not wanting to rain on his parade.  I can be annoyingly pedantic at times; “what do you mean by …? (insert word/concept of choice).  I see it a helpful rhetorical device designed to clear up any potential misunderstanding, although others may not.

Remission is not the same thing as cure.  It just means that on the day that the oncologist examines a scan/blood test etc, there is no sign of the disease.  It doesn’t mean it’s not there.  They just can’t see it.  There is a limit to the resolving power of even the most sophisticated scanning machines.  I know this much from personal experience.

And why is this important?  Most cancer deaths come from cancers that return – usually in a secondary or tertiary site – metastatic cancers.  Having had a thoroughly good kicking in their original location, malignant cells can wander off, sulking and skulking, before getting up to mischief elsewhere in the body.  At a time and place of their choosing.

When I see the oncologist, I ask him to define ‘remission’.  “It’s not a word we use – although it is used for certain haematological cancers.”  He confirms that today, there are no signs of cancer in my body.  “You’re doing very well – although with all that you’ve been through, we can’t rule anything out.”   No – I understand that.  I have learned not to have unrealistic expectations.

My chest sounds fine when he listens – no crackles.  Perhaps it’s the Power-breathe; I’d certainly like to think so – having been at it for 4 weeks now.  He asks about aches and pains from the lung surgery; it’s been 18 months and I’m still sore under my left arm.  “Unfortunately, you’re probably stuck with that”.  It’s not really a big deal; I’ve got to that age where, had I not had cancer, things would have started creaking and dropping off quite naturally – the inevitable precursor to oblivion – ‘sans teeth, sans eyes, sans taste, sans everything’[4]. 

He is relaxed enough about my progress to pass on a 3 month check up and see me in 6 months; “unless you’re worried of course – you can see me any time”.  No, I’m not worried; call me Joe Cool.  Today the scans are clear and I’m happy with that.

There have been times during the past year when I’ve not been happy with my progress – my mind drifts back to a consultation with the cardio-thoracic surgeon some 18 months ago during which he raised concerns about surgery – specifically – its negative effect on my “quality of life”.  And at times like these I wonder if I made the right decision.   Perhaps I should have just taken my chances with another dose of Chemotherapy.  Annie, on the other hand has no such doubts; “you probably wouldn’t even be here now”.  And hands me a tea-towel.  There is surely no finer example of normality than standing side-by-side at a kitchen sink.

It’s easy to forget that this year has been as trying for Annie as it has been for me.  She’s also been a cancer survivor for 6 years.  She’s borne it for the most part with dignity and good humour, losing her cool only when the Byzantine nature of the NHS conspires to prevent even the simplest of conversations or exchanges of information between doctors, or between doctors and patient.  I cannot imagine how I would have got through this without her.

And to all of you out there on the other side of my computer screen, reading this blog – thank you.  You make a difference.  As for other members of the cancer family – hang in there.  Acknowledge your own Special Day.

I look forward to Special Day Number 7.  Perhaps a new voice.  Or a year free of treatment.  Better still – all my bits, present and accounted for.  I’ll drink to that.

[2] Chronic Obstructive Pulmonary Disease

[3] See ‘Lunar-tick’, November 22^nd 2011

I tell him about cycling to work and climbing three flights of stairs and how this seems to make my voice louder.  By the afternoon, my voice has all but gone.  On occasion it might put in an appearance after sundown – but to all intents and purposes, it’s a lark rather than an owl.

What I cannot do is control it.  I am not in charge.

“When you climb these stairs – do you wheeze?”  No, I do not wheeze.  He thinks for a minute.  “I’ll be honest, your larynx isn’t the easiest to work on.”  So – a voice with a stroppy attitude.  I ask why the needle in the neck, rather than the tube down the throat.  “It’s less risky for you”.  But he does let me know that while it’s better for me it’s not so good for him.

He inspects my voice box with the camera; “it’s not great, I’m afraid”.  He suggests I go back to seeing the voice therapist; “I can keep an eye on you”.  Then it hits me; he’s not going to offer another injection.  I’m stunned; it was not what I expected.  But you said …   It takes me back to May 2010 when the cardio-thoracic surgeon was coming up with all sorts of reasons why he should not remove my tumour.

This was meant to be a routine appointment and it’s becoming anything but.  Annie couldn’t be here and I have to sort this out myself.  I’m still taking in what he’s just said, but I also need to counter it quickly.  When he turns away the moment will be lost.  Patients are always advised to have someone with them for consultations – it’s difficult to process information, particularly disappointing information and at the same time form a challenging response.

Eventually I blurt out “does this mean you’re not going to try again?’  It’s the best I could manage under the circumstances.  He thinks for a minute; “We could do better.”  I can see that he’s trying to convince himself.  He brightens up; “If you’re keen, then why not?”  I sign the consent form; “We’ll be in touch”.

I sit in the car afterwards; if I hadn’t pushed hard I’d have been back to humming through a fat straw in a glass of water[1].  I wonder if I’m kidding myself; that this is a good as it gets.  No; boots straps must be pulled up, loins must be girded.  Onwards and upwards.  I look at the consent form; the times I’ve signed these without reading them.  Under ‘risks’ he’s written ‘wheeze’.

Chicken legs tend to come in ones or twos, unlike their porcine neighbours who hunt in packs.  Have you ever seen just one cold sausage in a fridge?   Sirens of the cool-box, they pull us in, with promises of pickles, mustard and gherkins.  Fortunately we have no cold sausages and so I snack rather than feast.

One chicken leg is not enough but by an heroic display of will-power I leave the other one for Annie.  Like Old Mother Hubbard’s children I prowl the kitchen looking in all the cupboards for the next course.  I come across a packet of rice cakes and attempt to disguise what is really nothing more than a circular polystyrene ceiling tile, by adding a thick layer of extra mature cheddar cheese.  This hits the spot and I settle down to read the paper.

No sooner have I wiped the crumbs from my lap when my heart starts to quiver. I check my pulse – I can’t tell the BPM – but I know fast or slow.  It’s ectopic; moderately fast with every 6^th beat missing.  Was it the 2^nd cheese-laden rice cake?  I can’t re-run this particular experiment.  In the interest of science I decide to skip the pill-in-the pocket to see how long this episode lasts.

In the event, it’s about 2 hours, although the effects – lethargy and breathlessness last until the next day.  This is all very interesting; the periodicity is roughly the same but the duration is falling.  The first episode lasted 36 hours.  Since the end of June the episodes of heart arrhythmia have occurred on average every 27.8 days (plus or minus a couple of days).  This is close to the lunar cycle. Hmm.  I obviously need more readings before I can publish a ground-breaking paper.  You won’t get taken seriously with just 5 points on your graph paper.  No matter how neatly you label your axes.

(I think) I understand the principles here; after an ablation the heart has to establish new pathways for electrical conductivity because some of the original pathways have been zapped and so are no longer available.  So although I get the what, I don’t get the how or the why.

I’ve lived with a Maths teacher long enough to know the difference between coincidence and significance.  I just rather like the idea of my heart rewiring itself according to the phases of the moon.  Or the sun, which has a similar rotation period.  We are children of the cosmos, billion year-old carbon, like the song says; “We are Star dust, we are golden….”

An email from Neil; there’s a message on his answer-phone.  I’m always shocked and saddened when it’s someone younger than me.  Doubly so, when it’s someone I know.  Steve Hollier, one-time accordion player with Fat Freddy’s Cat, passed away very suddenly last week.  There was far more to Steve than music – he was a true Renaissance Man.  But music was where our particular worlds collided.

As I write this I’m struck by how quickly an ‘is’ becomes a ‘was’.  The sudden reference to the past tense seems indecent.  And quite unnatural.

FFC was an established band when Steve joined.  His first rehearsal was a tense affair; but Steve was one of life’s smilers and any nerves he felt were managed well.  As we finished he remarked; “this is the band I’ve been waiting for all my life”.  Little did he, or we for that matter, know that FFC was simply a transit camp – a place to be – until he met the woman he’d been waiting for all his life.

Joining a gang can be difficult; established hierarchies, relationships, jokes, codes – all need to be interpreted and negotiated by the newbie.  But it works both ways – Steve brought new music and a new audience and as a result we started playing tunes we wouldn’t have thought of before.  To people we wouldn’t have thought of before.

Our repertoire expanded and so did Steve’s role in the band, displaying, in addition to his proficiency on the accordion, a hitherto unknown flair for fruit-shaped percussion.  (What possesses someone to go into a music shop and buy pieces of fruit that are in fact musical instruments I don’t know.  Or why anyone would make them, for that matter.  But it always made the audience laugh when Steve got his pear out).

And then he met Sandra.  Sandra is an itinerant English Language teacher, travelling the world wherever work takes her.  It was clear to all that she was ‘the one’ and her long absences meant Steve would eventually choose between the girl and the band.  A no-brainer really.  And off they went – first Egypt, then Namibia and finally Azerbaijan.  Steve documented their life together in writing and photographs, leaving a memorable audit trail for friends and family.

We last met in June 2010, during a brief trip back to the UK.  Sitting in my garden on the very day I was to go into hospital for the lung resection, we talked about one-lunged singers, never imagining that we would not replay this scene again.

Death and taxes are the only certainties in life, according to Benjamin Franklin.  I’d add one more – because with death (and perhaps taxes) invariably comes regret.  Regret at a life not lived more fully or regret at letters unwritten, emails unsent, phone calls unmade.  The Universe seems full of regrets – perhaps the shooting star we see on a starry night is not the soul of the dearly departed, as many like to think, but the manifestation of someone, somewhere bemoaning an action not taken.

But that could not be true in the case of Steve; he was not someone given to regret.  His life was lived to the full with energy and enthusiasm.  And a smile.

RIP Steve Hollier; you will be greatly missed.  And thank you for the music.

Fat Freddy's Cat june 2005