july 2010

3rd July 2010

News Flash: Man seen crossing Wobbly Bridge

News just in; A man has been seen crossing The Wobbly Bridge.  He appears tired and sore and says he is glad to be home.  More on this story later.

9th July 2010

a brief history of lung surgery

“There was that famous singer with only one lung – what was his name?” It’s the morning before surgery and I’m sitting in the garden with Steve – one time member of Fat Freddy’s Cat and now full-time global nomad (en-route from Namibia to Azerbijan) – and he’s doing his best to reassure me about the upcoming op.  He struggles a little while longer and then – “Whispering Jack something…”. Great.  I search his face for the punch line but none is forthcoming – he’s serious.  It turns out that a post mortem on Whispering Jack showed that his breathing apparatus was indeed functioning in mono rather than stereo and this apparently accounted for his idiosyncratic vocal style.  Hmm.

We bid farewells and then the rest of the day seems to fly by – a quick trip the bike shop, lunch with Helen and once the phone call confirms that surgery is on for tomorrow, I pack my bag.

Thursday Day zero Annie leaves my room about 7.30.  She wants to stay longer but I have to do this next bit on my own.  Besides which, she has a 40 mile journey home and lessons to plan for the next day.  Around 8.30 a doctor comes in the check on me; he seems to think that this is not a bowel cancer secondary but a lung primary.   I talk to a nurse about this after he’s gone; “you probably know more about your cancer than we do”. I fall asleep thinking of Annie and my new bike.  In that order.

Friday Day 1 At 8.00am I have a visit from a new (i.e. different) consultant anaesthetist.  She’s very positive – very gung ho.  She starts by explaining the procedure; “you’ve had a lot of little bits snipped away and now you’re going to have another little bit snipped away”.I hope it’s just a little bit” I reply thereby demonstrating my grasp of medical jargon.

“You can lead a perfectly normal life with just one lung”. This is good stuff and what I want to hear.  “Your lungs are in good shape – most people we see in here have lung disease and are smokers”. I tell her about the bike and she explains that she’s just bought her first new bike in 20 years and what a revelation it is.  And how her children want to cycle to school – but she’s not sure about it.  She turns away – and quietly, as if more to herself than to me – “perhaps I should just let them”.

We return to business; “you’re not going to need a pre-med – you’re and old hand at this”.  I try not to disappoint her – “perhaps just a little one?”   “I’ll get you a pill”. And then I’m alone again.

I’m third on the list and ETA is 1.30pm.  I shower and then wander off to buy a newspaper.   A turn around Car Park 2 in the sunshine; it’s so good to be alive.  I’m fine and dandy until around 11.30 when I’m advised to get my gown on.  The bridge starts to wobble.  I’ve read the paper and packed and unpacked my bag a couple of times and have now run out of diversionary tactics.  So I just lie on the bed and wait.

About 1.00pm the happy pill and porters arrive.  The bridge is now completely still.  In theatre I explain that I have a gig that night in MK so if they could not hang about I’d be very grateful.  We laugh.  And then I go to sleep.

I guess it must be around 8.00pm when I wake up in Critical Care   Annie’s there, holding my hand.  It appears I still have half a lung.   Great.  A nurse tells Annie that she’s never seen anyone come out of theatre and into CC who is not on a respirator.  My remaining lobes are apparently doing the job just fine.  I stay here the night and move back up to the ward on Saturday.

Sunday Day 3. Chris and Emma come to visit with Annie.  Facing me, on the wall of my room, is a white board.  Emma draws a picture of a bike and the legend ‘London–Paris 2011’.  Underneath, Annie draws a picture, purporting to be of me, standing in front of a microphone and ‘MK Theatre Feb 2011’.  So my two goals – Emma wants a big bike ride and the band is taking part in a charity fundraiser at the Milton Keynes Theatre next February.  I don’t realize it at the time but these two doodles will turn out to have a significant bearing on my stay over the next couple of days.  The epidural is making a good job of keeping the pain under control and so apart from a little concern about my voice – I am reduced to a rasping whisper – I feel fine.

Tuesday Day 5. The Physio came to see me yesterday and I drew her attention to the pictures on the whiteboard.  So today she brings me an exercise bike.  Amazing.  The epidural is disconnected, one of the two drains in my side is removed and I stagger over to the bike and peddle away for 20’.   If I were watching this scene instead of acting in it I would find it bizarre in the extreme.  I’m riding no-hands – I have to because I have a drain in one hand and the catheter in the other.  Just 4 days after surgery and I’m riding a bike.  When Annie comes in the evening I give her the nod about the other one.

Mr S comes to see me and explains that because the margins on the upper lobe were clear he was able to save the remaining lobe.  I express my gratitude and relief – and my concern about my voice, which has still not come back.  “You have some sort of vocal palsy” and arranges for someone from ENT to come and see me.

Apart from this I’m happy – the catheter has come out, the second drain will probably come out later today and there’s macaroni cheese for lunch.  Bliss.

Early afternoon I get a visit from a doctor (plus 2 students) from ENT.  I point to the white board and try to explain why I want my voice back.  I assume that, as it doesn’t sound loud to me, it doesn’t sound loud to others – so as I raise it above a whisper it breaks up like some distant radio station through the static.

He asks the question I always dread (because I can’t really explain it at the best of times) “What sort of music do you play?” I mumble a bit about Tex-Mex (which he associates with funny men in big hats) and then bluegrass, country, blues – whatever really.  He turns out to be a Ry Cooder fan and as we cover a Ry Cooder song I direct him to www.fatfreddyscat.com where he can listen to some sound files – in particular to a YouTube video where we do a bluegrass version of Get Back (although to music scholars this is more correctly an Appalachian version as it is set in a minor key).  “And do people pay to hear you?” I nod – and suitably impressed he gets down to business.  He has a camera that he plans to pass up my nose and down into my throat.  “It won’t hurt but it will feel a bit weird”. He numbs the back of my throat and begins his exploration.  As I emit various sounds he confirms that the left side of my voice box is not moving – it’s paralysed.  It may be temporary (bruising to the nerves) or permanent (nerves have been cut).  It will take around 2 months to find out if it’s temporary or not.  If it is – then it’ll take around 6 months or so to come back. “I’m sorry – you’re just going to have to be patient”. We don’t talk about the permanent option.  In the meantime I will referred to a Speech and Language therapist.

This is hard.  I know I can’t play forever, but I’m not ready to stop singing just yet.  Making music is such a creative and social process.  When we tackle a new song, we all have our different jobs to do.  I learn the words and the phrasing; the others work out arrangements, instrumental solos and then we put it altogether – changing some bits, adding others, till we’re happy with it.  It’s a team effort.  I guess I’ll not be going to Germany in September.

Later that night a nurse passes my room and I call out to her.  But she doesn’t hear me.

Thursday Day 7.  The past couple of days have been difficult – as if I’ve gone backwards.   With the epidural out, the pain relief is now Tramadol and I think this is making me sick.  The second drain came out yesterday and didn’t go quite as smoothly as the first.  Removing a drain is a 3-person operation – 2 nurses and me.  One pulls the pipe work, one secures the wound and I provide the means, via inhaling and exhaling, of ensuring that any trapped air comes out at the same time.  So the procedure is roughly a couple of big breaths and in and out, a big hold and then a big exhale as the nurses do their bit.  But this time I cough as we come to the crucial stage and there is some air left behind in the lung cavity.  I’m sent off for an x-ray which reveals a partial collapse.

My heart has been all over the place as well; this sort of surgery places strain on the heart, as it has to deal with a reduced supply of oxygen.  I’m put on medication to ease the fluctuations.  Plans to send me home on Wednesday are shelved.

Life feels very different this side of The Wobbly Bridge.  There are three stages to go through; coping with cancer, coping with surgery and coping with life post-surgery.  Prior to surgery the dominant emotion is one of anxiety mixed in with a little bit of fear.  These have gone and now it’s all about hope for a cancer-free life.  After the liver surgery Annie said;  “you don’t have cancer any more”. The cancer engine had been removed – clear margins all around and with chemo mopping up stragglers – her optimism at the time was reasonable.  And I was tempted to say it this time – but can’t quite bring myself to.

One of the nurses chats as she takes my BP; “Aren’t you angry?” If I had £1 for every time someone has said this to me I have about £4 by now (give or take).  No – I’m not angry.  I wonder why people ask this and decide that it must be an age thing – everyone who’s asked has been a lot younger than me.   I’m not repressing my anger – I just don’t feel it.  I’m a bit pissed off about my vocal chords but have convinced myself that this is temporary.

I finally manage to get ride of some of the operational debris – “old blood” as Mr S calls it.  One particular sample fascinates me – it is completely spherical, about the size of a gob-stopper and has the surface texture and colour of a raspberry sorbet.  Bizarre.

One final x-ray this morning shows that the partial collapse of my left lung has not got any worse and so at lunchtime I call Annie to come and get me.   In spite of feeling grim I count this a positive experience of hospital – I seem to have recovered from surgery more quickly than with the previous ops.  And, because of the doodles on the white board, my concerns were taken seriously and dealt with quickly – it’s an approach I can only sum up, rather inelegantly, along the lines of ‘you have to take the problem to them’. Tell people what you want to happen and they will do their best to ensure it does.

Annie manages to leave school early and picks me up around 4.00pm. I tell her that if my voice is permanently damaged I’ll form a new band of similarly afflicted people – we’ll call ourselves ‘The Hoarse Whispers’. It’s good to be home.

19th July 2010

the long and winding road to recovery

“Oh – this is disappointing”. It’s said with a real air of concern.  “This is really disappointing”.  For about 30” Annie and I freeze.  We do not speak, do not breathe, do not look at each other – we each know that the other is thinking; “did I go through all this for nothing?” It’s a week after I left hospital and we’re in the consulting room of Mr S.  It’s hot – so hot that the fan is just blowing warm air around.  He’s looking at the results of the tests done on the tumour and lobe that was removed during surgery.  Eventually – it seems a lifetime – he explains that he does not have the information he was hoping to pass on – namely what it was they removed.  “I can assure you the margins were clear”. It appears the source of my recent stay is still unconfirmed – a bowel cancer secondary or something else?  I’m confused – the report with the typo (May 6th) suggested it was ‘consistent with (a) colonic cancer’ secondary.  “I’ll ring you when I find out”.

As we leave Annie and I are more concerned about how Mr S can possibly work in such in stifling office.  Eventually we broach the subject – and we leave it at relief.  The implications of the source of the tumour are beyond us right now.

It’s been a long week.  The first day home (Friday) was awful.  Breakfast (just toast) would not stay down and I felt so bad that at one stage we considered ringing the hospital and going back.  I decided to ditch the Tramadol and Annie bought some paracetamol with codeine after consulting the pharmacist at our local chemist.

A total change the next day – my appetite was voracious, as if I hadn’t eaten in weeks.  In the afternoon Annie slips out saying she’s just off to the shops and comes back with The Bike. And it has my name on.  It’s now sitting in my study (she drew the line at the bedroom) – just waiting for me.  And although it’s blisteringly hot day – she’s cooking a roast dinner for supper.  When I had the bag on and just could not eat at all, the Stoma Nurse (Bag Lady) suggested roast potatoes and gravy as a sure fire way to kick-start the appetite.  Works every time.

Sunday was strange – my blood pressure kept dropping – every time I got up, from lying on the sofa or sitting in a chair, I had a ‘grey out’.  Not as extreme as a black out but the kind of dizziness that you feel behind the eyes.  And severe breathlessness.

By Monday I’m charging round the house (relatively speaking) – I even play the guitar for 10’ or so.  Annie comes home in her lunch break to check on me but I can manage.  And the Tour de France is on TV every afternoon so I’m sorted.

Over the next couple of days I’m able to do more for myself.  I try cooking but getting things out of the fridge proves to be a bit too much – although I bend and lift with my right hand the pain still pulls on my left side.   I sit in my study with a coffee and get to know my new bike.  I’m banned from sitting on it unsupervised so I content myself with polishing the shiny bits. It’s painted white – so not as fast as a red one.  But then I’m not that fast either.

By Thursday I’m ready for my first big test – to walk from one end of the Churchill Hospital to the other and back again.  As we come through the main entrance we pass the courtesy wheelchairs.  My pride simply won’t let me take one.  The stretch in front of us is considerable – relative to the amount I’ve been able to walk so far.  Annie is impressed – “you’re walking properly – you’re not shuffling”. And I don’t feel particularly out of breath.  I’m impressed.  But I’ve been through this enough times to realise that I can just as easily go backwards.   As we drive home Annie says “You’ve had a good week – you don’t look the colour of your beard anymore”.

Things gradually improve throughout the next week; I manage a few walks in the evenings when Annie comes home from work and even a trip to the bike shop.  But the codeine is now starting to get to me, so I decide to stop taking painkillers.  For a little while nothing much happens and then slowly I become aware of little sharp stabs in places where I’d not felt anything before.  A bit like pleurisy pain (if anyone can relate to that).   But more than that – I’m also aware of an incredible tenderness and soreness across my chest and under my left arm.  But nothing from the wound itself.  The swelling has gone down and now we (or rather Annie) can see that it’s much longer than we originally thought – about 12” long.  It all looks very healthy – so different from the bowel surgery wound (which became infected from a leaking Stoma bag) and the stapled liver surgery scar.  It’s been almost 4 years since those original operations and techniques have clearly moved on.

At the end of my second week home I visit my GP.  He urges caution about coming off the painkillers – it’s better to keep pain management topped up, so to speak, rather than having to start from scratch each time.  But – if I keep taking them, how will I know when the pain is no longer there?  We get a prescription (just in case) but it stays in the cupboard.  The only thing I can’t stop is the heart medication.  My heart is still all over the place so I’m booked in for an ECG in the following week.  For some obscure reason (which even the GP doesn’t understand) I have to avoid direct sunlight while taking these pills.  But at least I’m down to 1 per day.

These past 2 weeks have seen a lot of visitors, cards and emails – so thank you everyone.  Although the joke about – “well you can always sing Wandering Star” – is now growing a bit thin.  A friend (Martin) from work sends me a link of Nana Mouskouri singing Hey Jude on YouTube – with only one vocal chord apparently.  So the bar has just been raised.  Just need a long black wig and a pair of glasses.  This could be an astute career move – beats The Hoarse Whispers any day.

22nd July 2010

you don’t know what you’ve got till it’s gone

“Do you want to see my impression of a Swift?” Annie looks at me with a mix of indulgence and impatience.  “Do you want to see it again?” She laughs – she has a thing for corny jokes.  We’re sitting in garden looking up at the great blue yonder and a couple of Swifts come in to view, tracing energetic circles in the sky, thereby prompting the joke.  I try another (bear with me – this is significant) – “do you want to see my impression of a Swallow?” She nods – and at this point the punch line is “gulp”. Only nothing happens; I can’t gulp.  No sound – no movement of the larynx.  My ability to swallow is compromised.  I hadn’t really thought about this until now – but I had noticed that when I take a drink I often start to choke.  This suggests that the vocal chords play a part in the swallowing reflex as well as sound production.  You live and learn.

So – I am still vocally challenged – almost a month and no real change.  Here are a few things I cannot do (at present);

Alter the pitch of my voice – I’m stuck on one note.  My musical repertoire right now consists of the first 12 bars of One Note Samba.  And given the current volume I can manage I’ll have to change venues from noisy pubs to playing in a library.

I cannot join in a noisy conversation; most Sundays Annie’s sons, Chris and Dan and Chris’ girlfriend Emma come round for dinner.  These are usually lively affairs with lots of jokes and banter.  I’ve had to learn to wait for a lull in the conversation before chipping in.  (Isn’t that polite, normal behaviour? Well yes – but these occasions are not dinner parties – they’re part of normal family life among a group of people who are catching up having not seen each other all week).

I cannot have a phone conversation; I am concerned about going back to work like this.  Perhaps I could make a living making silent calls?

I cannot shout or call out.  Luckily Annie has ‘teachers’ hearing’ (as well as eyes in the back of her head) so she can hear me speak from the other end of the house.

All of these are things we all take for granted – never giving them a second thought.  I’m not wallowing in this – and it does make me think about other people and the things I can do (and take for granted) that they cannot.  And thinking about this takes my mind off the cancer.  A bit like when I had the ileostomy; the 18 months I spent dealing with the bag – cleaning it, worrying about what would happen if it leaked when I was out (it did) and the poor diet visited upon all ileostomy patients – ensured that I didn’t really give cancer a second thought.  Well I did, but it became secondary (no pun intended).  And with clear margins on the bowel, clear margins on the liver and no sign of anything on the various scans and blood tests I quickly slipped into thinking I had beaten this poxy disease.

But now the ever-present thought in my head is that I haven’t (yet).  A colleague at work went through this – a left upper lobe resection for a bowel cancer secondary – and a year later another one turned up in the right lung.  So worrying about my voice is a handy diversion.

I’m told that the nerves associated with the vocal chords grow at a rate of about 6mm per month.   Which is why natural repair (if possible) is a long process.   Surgical intervention is usually delayed until at least 6 months – more commonly 12 months – have passed.  I read somewhere that one treatment is to inject fat (taken from the patient’s stomach) into the vocal chords (no – I have no idea why or what on earth they were thinking when they hit on that idea).  I cannot see the repair of vocal chords being a priority for the NHS – it’s not life threatening (although it is quality of life threatening) – so being a reasonably confident DIYer (I plumbed in a cloakroom wash basin earlier this year) – and having cleaned my own Stoma every day for 18 months, any vestiges of squeamishness I might have had have long gone – I consider doing it myself with a turkey baster.

Or alternatively – I go private.  This is a big deal for me – I’ve grown up believing in the principles of the NHS.  But when I was first diagnosed with cancer I quickly realised that I belong to that middling group of people who could end up paying for some of their healthcare – middle-aged and middle income.

I have no complaints about how the NHS has dealt with my cancer – treatment has been quick and I’ve had access to high quality facilities.   OK – some of my dealings with the people involved could have been less stressful – but on the whole I cannot see, particularly in the new Heart Centre at the JR Oxford, that private healthcare would have been any different.  But treating vocal palsy might be different – although someone from ENT came to see me on the same day as Mr S put in a request – and they referred me to a Speech Therapist straight away.  I have my first appointment in 3 weeks time.  So things are moving quickly on that front.

But if the damage is permanent then I guess I have to consider the private option. I’m still struggling with the concept right now – if I pay for treatment do I become a customer/consumer?  If so – do I have consumer rights? – i.e., if it doesn’t work can I have a refund?  Surely I cannot have fewer rights than a faulty TV?  So many questions.



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