January 7th 2011
Strictly Radiotherapy – the Results are in.
We’re a little apprehensive – correction – I’m a little apprehensive – not sure what to expect. Today’s appointment should have been just before Christmas, but was postponed because of the weather.
The pains have largely dissipated. Twinges down my left side when I cough, but eating is now possible. Christmas dinner did not have to be liquidized thank goodness. In fact Christmas was great – much better than I anticipated. We have our own traditions – music while the preparations are going on; Carols from King’s College on Christmas Eve, Bach’s Christmas Oratorio and Phil Spector’s Christmas Album – I know this may offend the purists, but I’ll take Darlene Love’s version of White Christmas over Bing Crosby’s any day.
While all this is going on Annie is in the kitchen preparing Brussels sprouts ala Heston Blumenthal (picking all the leaves off – any idea how long it takes to pick the leaves off a sprout?). And then the family are here – presents, the admiring of new jackets/jumpers/scarves – much laughing, drinking and then dinner. I manage turkey and roast potatoes but pass on the sprouts. I play the ‘difficulty swallowing’ card.
But now 2 weeks on I’m so tense I hardly speak. I’m preparing myself for the ‘we’re going to put you on a course of chemotherapy’. If so – please give me a couple of months break so I can get over the radiotherapy. When we get to Oxford the waiting room is packed – the oncologist is running 70’ late. A few grumbles but most take it in their stride.
All of humanity is here – young, old, poor and toffs. Some are looking after elderly parents but most are couples. I wonder which one has ‘it’. Not easy to tell until a name is called to go and get weighed. Expressions of anxiety – expressions of affection and tenderness.
It occurs to me that Life – a life – anyone’s life – is not a continuous narrative, but a series of short stories separated by periods when nothing much seems to happen. What stories are going on here today?
When we see the oncologist she’s very reassuring – the side effects of the radio may last another couple of months – but – I do not need a course of chemotherapy. I’ll have a scan every 6 months for the next couple of years “and then hopefully that will be it. Touch wood”. Touch wood? But you’re a doctor – you don’t ‘touch wood’ surely? Perhaps we should sacrifice a goat just to be on the safe side.
We’re back to square 2. Which is a whole lot better than square 1. On the way home I feel an enormous weight lift from my shoulders. I start to think about positive things – having fun – holidays – bike rides. Things I’ve just not been able to contemplate these past few weeks.
The new bike is slowly taking shape in my study. It now has handlebars, a saddle and brakes. I have part of the transmission and a front wheel in the garage – the rest will come in due course from the Internet.
One of the things I’ve always admired about the bicycle is the fact that all the parts are bolted onto the outside of the frame so that it becomes obvious how it all works. Nothing – apart from the two sets of bearings for the bits that rotate (steering and pedals) – is hidden. Diagnosis of anything untoward is relatively easy. Unlike the human body. Or the motorcar for that matter.
I’ve never been much good with cars – although at the age of 18 (with a mate who knew about these things) I performed an engine transplant on my first car – an Austin A40 Somerset. The car had cost me £10 and the engine lasted precisely 2 weeks. We found a replacement in the local scrap yard and using a tree outside the front of my house as a make-shift crane, lifted the old engine out and put the new one in. My mum was frantic that we were going to break the tree – and neighbours came out to watch as if to confirm this fear. The tree bent under the strain, but did not break. The amazing thing is that, apart from connections to the gearbox, just 3 bolts held the engine in place.
When I look under the bonnet of my car today (if I do at all) – I have no clue as to what’s going on. None of the parts are recognisable – which is probably deliberate as interfering is strictly forbidden. The onboard computer will decide what needs replacing and when. Any surgery requires a team of experts in clean overalls and a diagnostics console with leads and flashing lights.
I am, however, allowed to top up the screen wash. A concession I feel to prevent the total emasculation (and whatever the female equivalent might be – e-feminate? – no surely not) of the owner/driver – whose role now consists of merely pointing the car in the right direction. And replacing spent fuel. The car is now Master – we are merely slaves.
I can’t help feeling there’s a parallel with the human body here. Very few bits are attached to the outside – it all goes on under the bonnet. It’s not at all obvious how it all works. In order to improve my understanding I put in my letter to Father Christmas a request for a lavishly illustrated book on the human body. He did not disappoint. As I pour over the pages the complexity takes my breath away. It is all simply mind-boggling. And beautiful. But I’m left with more questions than answers.
I have become more aware of my body over the past 5 years or so and know when things are ‘not right’. And I follow my instincts – if I feel I’m doing too much and need a lie down, I have one. And I understand about referred pain – just because it hurts in one part of my body, it doesn’t mean that’s where the problem lies. But that’s about the limit of my knowledge. As with the modern motorcar, my role is simply to replace spent fuel and get to the hospital on time. It’s down to the experts to find out what’s wrong and make it better. Touch wood.
The answer phone is flashing when we get home. A message from MK hospital – they want to do the voice procedure on January 20th. This is the day I’m due to have the heart monitor fitted. You wait months for a procedure and then 2 come along at once.
Well clearly I can’t do both – one will have to be postponed. Decisions, decisions.
January 19th 2011
This time tomorrow
This time tomorrow/ where will we be? / On a spaceship somewhere/ sailing across any empty sea
Mumford & Sons
I’ve been having some weird dreams over the past couple of months. About half a dozen times to date – the theme is always the same, but the scenario differs. They are so vivid. I’m singing – in a rehearsal with the band, to Annie, on stage at a gig, to myself ….. Each time I wake up I’m convinced it’s real – the first time, I woke Annie to tell her I could sing. Of course the actual telling disproved the claim.
I am quite nervous about tomorrow – expectations are so high. I go in hoarse, breathless and limited in my participation in every day life – and come out loud, erudite and slot right back into my life as it was 7 months ago, as if nothing has happened. I know this is what some people expect (and what, for that matter, I hope).
Perhaps it’s all bit sudden. While it was just a distant possibility – so too was the possibility of failure. By a bit of convoluted reasoning (full of double negatives) – all the time I’m not having the procedure, my singing days are not definitely over (or not). If you see what I mean.
And now the end is near/ the porter comes – pulls back the curtain/ the surgeon does his bit/ but will it work? – I’m not that certain.
I did wonder whether or not to postpone the procedure, given that fitting the 24-hour heart monitor had already been scheduled for the 20th. I reasoned that if I delayed the voice by a couple of weeks and went ahead with the heart monitor – I could come off the Amiodorone sooner. And as I’ve managed this long with a dodgy voice another couple of weeks would not make much difference. But it turns out they’ve hired in special equipment and the consultant’s bought a new gown (which he’s desperate to wear) so a postponement might result in a delay of months. Rescheduling the monitor it is then.
The very nice admissions lady at MK hospital came to our rescue by shuffling her spreadsheets and managed to fit me in for the 19th – the day before the voice procedure. She also arranged for Annie to drop off the monitor tomorrow morning after I’m admitted to the ward; “No rush – once you’ve got him settled”.
So now I’m wired up – electrodes on my chest and a monitor about the size of an iPod hanging round my neck. I’d hate to be going through a security check right now. And this morning, I took what I hope will be my last Amiodorone pill.
I have to keep a diary of what I do all day in case I need to explain any curious blips in my heart rate. I try to remain calm and not get too stressed. I decide to make a list. Lists are always a comfort. It’s either that or sit cross-legged under a tree singing “Ommmm……”. From which, of course, I am currently disqualified by my lack of vocal dexterity. Not that it takes much, but it’s got me licked. (BTW – do we sing or hum “Ommmm….”? Just curious.)
A list of 10 things I currently cannot do – or cannot do without extreme difficulty.
1. Laugh out loud
2. Use the phone
3. Shout ‘Oi’ at local ragamuffins
4. Tell a joke
5. Say “thank you” at the supermarket checkout
6. Interrupt a conversation
7. Call out to Emma to slow down when she’s miles ahead of me on the bike
8. Argue my case
9. Shout at the TV
10. Sing (properly – not just “Ommmm…”)
At our consultation in October, Mr ENT said he could give me a speaking voice. But a singing voice? I don’t recall him being that positive, although Annie’s recollection of what transpired is somewhat different from mine. I’m reminded of a sketch by Peter Cook and Dudley Moore.
Mr ENT; You want a singing voice?
Me; Yes
Mr ENT; I couldn’t help noticing, almost at once, that you have only one working vocal cord.
Me; You noticed that?
Mr ENT; When you’ve been a consultant as long as I have, you notice these things almost instinctively. And you want a singing voice – something that traditionally requires the use of two working vocal cords?
Me; Correct.
Mr ENT; Need I point out where your deficiency lies as regards a singing voice?
Me; I think you should.
Mr ENT; Not to put too fine a point on it, it is in the vocal cord division that you are deficient.
Me; The vocal cord division?
Mr ENT; Yes, the vocal cord division, Mr Spratley. You are deficient in it – to the tune of one.
Your right vocal cord I like. I like your right vocal cord. It’s a lovely cord for singing. I thought that the moment I first saw it. I thought, “Here’s a lovely cord for singing”. I have nothing against your right vocal cord. The trouble is – neither have you.
The procedure – a microlaryngoscopy – requires a general anaesthetic thank goodness. A stainless steel tube is inserted into the throat as far as the voice box. The tube is rigid and acts as a conduit for microscopic examination and surgery. Because the tube is rigid, the neck is forced back – a bit like sword-swallowing – and there’s a risk of damage to teeth and soft tissue.
Having had a good look round, the left vocal cord is then injected with a ‘bulking agent’ to increase its size and move it nearer to the right cord. The ‘bulking agent’ varies – at one time Teflon was the agent of choice, now it appears to be collagen. The collagen comes from a unique source – a herd of specially bred cows to ensure they are BSE free. I wonder if I can be certified organic and free range? My friend Grace is convinced that the first thing I’ll say when I wake up is “Moo”. Which is a bit of a change from “Ommm …”.
The really big risk is that it doesn’t work. Or rather, it works for a while and then fails. Everyone reacts differently; some people need regular injections – for others one injection is enough for the weak cord to work reasonably well. And I’ll still have to have speech therapy to learn how to speak with this new voice.
In spite of all my reading I still don’t really know how it all works. The vocal cords open and close – passing air and stopping air. They stay open during breathing and move (in and out) during speech. The muscles of my left cord (and that’s all they are) have atrophied from lack of use – so it doesn’t move. So far so good.
But – and this is where I get stuck – if it’s bulked out with cow bits so that it’s nearer the middle – then surely the diameter of the windpipe is reduced. And won’t that affect airflow? Fluids move faster through a narrow opening than they do through a wider one. What affect does this have on breathing or on the voice?
All I do know for sure is that without these two simple muscles working properly it’s difficult to speak, swallow or breathe. And as for riding a bike ….
Emma dragged me out last Sunday. It was freezing cold (icy roads) and it took around an hour of coughing and wheezing to cover just 6 miles. After 3 miles or so I wanted to call Annie to come and get me in the car. I felt worn out for the rest of the day – and a little despondent, thinking, “is this it?” Annie can see I’m having a bad time and falls back on her years of experience as a teacher and her understanding of psychology to keep me motivated: “If you don’t go out next weekend, I’ll sell all your bikes – and mine as well”. I start praying for rain. “Ommmmm…….”
January 22nd 2011
A work in progress
I feel as if I’m in one of those ‘putting on a jacket backwards’ sketch. I have a gown – the usual flattering open down the back type – but as I am walking to the operating theatre – that’s right, walking – my modesty, and the discomfort of others, is preserved by my wearing a second gown, back to front, on top of the first. I’m in the Ambulatory Care Unit – a new treatment centre at MK hospital for the walking wounded. This is the 7th time I’ve been into an operating theatre in the past 5 years or so and the 1st where I have not been wheeled in on a bed of some sort. Or sedated. And the name is a bit of a misnomer because we certainly don’t amble. I’m first on the list. I look at the clock and it’s 9.05 am as the anaesthetic begins to take effect.
Mr ENT came to see me about an hour earlier. He’s affable and chatty. Is this the same man I met back in November? Mr Grumpy? Even the speech therapist thought him “a bit scary”. When we get to the ‘any questions’ bit I ask him about the source of the collagen. He looks a bit sheepish (no joke intended) – “Bovine”. I then do the BSE-free joke and he almost laughs – a smile is near enough. Perhaps he’s heard it before. I mention the success rate – or rather the apparent inconsistency of success – some people requiring multiple injections while others don’t. He agrees. “So it’s just a matter of luck then?” He looks straight at me – “and my skill’.
A little while later the Anaesthetist arrives. He needs to know how well my lungs are functioning so he can determine the correct levels of oxygen to give me. I tell him that they’re currently rubbish but mention that before the lung resection I could get round a 20 mile circuit on my bike in little over an hour. As luck would have it – he’s also a bike rider – and so we do the assessment in terms of how far I can now ride in an hour (about 6 miles) rather than the usual numbers. Then we chat about bikes for a bit. Perhaps this is why I don’t need a pre-med.
It’s just after 10.00am when I come round. My throat very painful – and a lot of coughing – so I’m given codeine phosphate (which is pure magic).
I’m dozy and drift in and out of sleep and then, as if by some sort of miracle, I find myself answering, “yes please” to the tea lady. But it’s not a wheezy, rasping, tentative reply, but a rather deep, manly, Richard Burton – there’s no question about it, I most definitely do want a cup of tea – “Yes Please”. I am astonished – that hour between 9.00 and 10.00 appears to have changed my life.
I go to the bathroom and try a tentative ‘hum’. Perfect – clear, strong, sustained with no wobble. I talk to myself and become quite emotional at this sudden change. It’s a miracle. You have changed my life Mr ENT – I want to have your baby.
He comes to see me around midday. I’ve had two massive injections of steroids and the vocal cords are swollen which, as I will see later, explain this apparent new voice. He talks about the procedure – it was a bit difficult getting the tube in – he points to his chin and without actually calling me a chinless wonder – explains that my jaw wouldn’t extend forward far enough to get a straight line. So there was a bit of pushing and shoving, which as the painkillers are now wearing off, I can readily testify to. And he may be right – I’ve had a beard since I was 18 and each time I shave it off I remember why I grew it.
I have to stay in overnight. Any problems are likely to surface in the next few hours rather than the next few days. I’ll see him again in 2 weeks see if it’s working. In the meantime – talk as little as possible over the next 48 hours.
Annie arrives just before visiting time ends – she’s had to take youngest son Dan to Heathrow so is a little surprised and disappointed that I’m not coming home. The voice too is not as impressive as it first was. By the time the post-visiting tea trolley arrives my “yes please” is no longer Burton the actor but more Burton the 50-shilling tailor. I try to hum again – the clear tone has gone, replaced by a gravelly, raspy low powered version. I guess the swelling is now going down, moving the cords further apart, which means more work on my part. Earlier on I had to do very little to produce clarity and volume.
I’m a little despondent after the initial euphoria. It’s not the miracle it first appeared to be. But it’s not a failure either. I can now construct a sentence that does not fade after 7 seconds. I can speak. The voice I have now is a heck of a lot better than the one I had at 9.05am. So I look on it as a ‘work in progress’. I have to concentrate on my breath control and get my lungs working properly. Going back to work on monday will be a big test.
After Annie goes I realise that staying in overnight has caught us both by surprise and I am unprepared – no earplugs.
January 27th 2011
Homage to Bobby Ewing
The first thing I hear is water. Splashing. It’s dark and I struggle to make any sense of where I am. Then a door handle – and a narrow band of light falls across the floor and onto the bed.
“Can you pass my towel?”
I’m lost. I have no idea what’s going on.
Again: “Can you pass my towel? – I forgot it”.
It’s Annie. Eventually I say; “sure – give me a minute”.
“CAN YOU PASS MY TOWEL? PLEASE.”
She didn’t hear me. I try again. She still doesn’t hear me. I get up and fetch her towel. I drift off again. In the distance the sound of a hair dryer and the radio. Morning has broken.
She didn’t hear me because the voice has gone. Not a temporary “I’m just nipping out to the shops” gone. Gone as in “was it ever really here in the first place?”
If this was an episode of Dallas then the past 7 days could all be explained by a dream. I didn’t really have the procedure at all. The Richard Burton voice, the conversations, the ability to speak without running out of breath – they never happened. But the bruise and red mark on the back of my left hand bear witness to a recent canula.
Now I sit here wondering why the voice went. It’s all very awkward – we had such plans.
A true story
Annie has a colour printer for her photos. It developed a fault and the shop she bought it from organised FEDEX to collect it so they could check it out. The man from FEDEX duly collected it as arranged. Then a call from the shop:
Shop: “I’ve just opened your parcel and I was expecting to find a Canon ip100 printer.”
Annie: “ so you should – that’s what I sent you”.
Shop: “well it’s a tea-urn”.
Today, 3 weeks later, she gets another call – FEDEX admit they’ve lost the printer. So the shop is sending out a new one.
But that’s not the end of the story as far as I’m concerned. I want to know – is there someone, somewhere attempting to make tea in a Canon photo-printer?
the prodigal tumour 