june 2010

9th June 2010

the A team

Slowly but surely a plan is coming together.  Offers of help are coming in from all quarters – colleagues at work, family and friends.  Some will wave and shout from the touchline, others will join in with whatever it takes to present the healthiest, most efficient, pair of lungs every to yield to the surgeon’s knife.

Given that the left lung is going to be thrown away it all seems like a lot of work for nothing.  Why couldn’t I just exercise the right lung, as it’s a keeper, and save myself a lot of time and effort?  But it doesn’t work like that – I’ve tried breathing deeply with just one lung and believe me – it really doesn’t work like that.

I have so many questions – right now I am wondering what will happen to the space once occupied by my left lung?  What will fill the void? I won’t have a depression on my chest because the ribcage will present a united front to the world.  But when I breathe deeply in this post-operative world – will only the right side of my chest move in and out?  Or will both sets of ribs move in sympathy?  It’s all pretty weird.

Annie’s brother helpfully suggests that I ask them to leave a flap so I might have extra storage space – a natural pocket, so to speak.  I can see his point.  Such an opening could be really useful.  Keys in particular are always a problem at the seaside – do you leave them under your towel, do you buy one of those waterproof purses?  Or does some poor unfortunate have to stay behind guarding stuff while everyone else goes off and has fun. … It’s all a bit of a faff really.  But the chest pocket would seem to solve that problem at a stroke.

I’ve just googled pneumonectomy.  A word to the wise – don’t.  No sane person would go through this having read what I’ve just read.  It’s a bit like Catch-22 – no fit and healthy person would go through with it – but they’ll only offer it to fit and healthy people.  And in answer to my question – it turns out that other organs can move into the space – and if it becomes a problem (how does one tell?)– then a prosthetic lung can be fitted.  No.

I read up about VO2 Max instead – or more correctly VO² Max.  It all seems very complicated and difficult to measure outside of a lab. It can take up to 6 months to increase by 20% – and significantly – it’s as much genetically determined as anything else.  Which is great as far as I’m concerned.  Because if mine’s rubbish it’s something else to blame on my parents.  In the absence of the appropriate technology and the time needed, I settle for getting out of breath 4 or 5 times a week.

I feel I should point out that I am not an athlete or a sporty person.  Never have been, never will be.  Which is ironic given that I’m surrounded by them – at home and at work.  Annie is a qualified aerobics instructor, Chris (her eldest) is a rugby player, Dan (her youngest) is a footballer, and Emma (Chris’s girlfriend) runs and cycles.  I share an office with a hurdler/sports psychologist and an ex-Olympic coach.

The only form of self-propelled motion that I’ve ever really taken to is riding my bike.  And that’s probably because I can do it sitting down.  And dressing up in Lycra.  I really like that bit.  So apart from a penchant for aerodynamic man-made clothing, I see myself as an ordinary person trying to live a reasonably healthy life without getting too obsessed about it.  More couch-couscous than couch-potato.  What drives my need for fitness is the fear of becoming invalid – and I mean that in both senses of the word.

Annie decides that we’ll go for a ‘brisk’ walk 3 evenings a week after work.  I promise to go to the gym twice a week and to try and get out on the bike once a week.

Emma offers to take me out for a spin at 7.30 one Sunday morning.  I have a 15-mile circuit which should take around an hour.  Apart from a few ups and downs it’s fairly flat – but there’s a sting in the tail, a mile long uphill drag about 2 miles from the finish.  When I first tried this last summer I completed the course in about 58 minutes (To put this in context – at 16 I used to race and I could do this distance in around 40’)

But a few months ago it was taking me around 1 hour 10’.  I put this down to a general lack of fitness brought on by the long winter – (I didn’t want to get my racing bike dirty by riding on mucky roads).  Of course, now I can blame the tumour in my lung.

Emma wants a chance to show off her shiny new racing bike.  So we set off, me in front and, truth be told, a bit quicker than is sensible.  Then I realise I’m showing off and slow down a bit.  I used to do this with my mates when I was young.  We’d be out on our bikes and if we saw some girls ahead at a bus stop we’d all get our heads down and sprint past them.  One of my friends asked, “why do we do this? – we’re never going to see them again.” Men huh?

Emma comes past and I hang on her wheel.  We steam along and I feel great.  About 4 miles from home and we’re on a dual carriage way – long and flat.  She has her head down and leaves me trailing.  At one point she’s about 500m ahead of me.  She has a red bike, which helps – it’s well known that red bikes are faster.  I ease up and am just pleased to be out on my bike.  And I’m glad to see her having fun too.  Then we hit the long slow drag.  And gradually I catch up.  About halfway I draw level – I assume she’s slowed for me but the look on her face says not.  I pass her.  My lungs are bursting – I keep telling myself, like some sort of mantra, ‘this has to be doing me good’.  I wait for her at the top – she smiles as if to say ‘not bad for an old man with a dodgy lung’.  The reward for the long slog is an equally long run down hill towards home.

Just before we get to my road there’s a short steep hill with a right hand curve half way up.  I always race up it as if emulating my heroes in the Alpine stages of the Tour de France. She comes past me sprinting, elbows out (where did she learn that?) laughing all the way to the top.  Respect.  The time, at the front door, is around 55’.  A record.  But is it a fluke – helped by Emma pacing me much of the way?  I decided to find out the very next Sunday by going out on my own.  I manage 55’55”.  No fluke.  But it really hurts.  And I guess this is as good a working definition of ‘endurance’ – hurting and carrying on.

A radical thought enters my head – could I be fitter now than I was 20 years ago? (If so I must have been a real slob then).  Probably not – age and cancer must surely have taken their toll.  Having given up cycling at 18 once girls and Lambrettas (I was a Mod) kicked in – it wasn’t until my 40th birthday that I rode a bike again.  I remember having to lie down for about 20’ after a 10-mile spin.

Now – to Annie’s delight and amazement – I celebrate my 55’55” by doing cartwheels round the garden.  In my head.  I actually make us both a cup of tea.  Then we go and inspect the beans and the potatoes.  But I don’t need a lie down.

The next stage in the plan is to add more miles on and gradually build up my endurance.  Because to deal with cancer that’s what you need – endurance – hurting and carrying on.  And the A Team.

 

14th June 2010

a sledgehammer to crack a nut

I’m digging a hole – or rather a trench.  It’s about 2 or 3 metres long, about a metre wide and at the present moment I’m standing waist high.  I take a rest and across the spoil I can see two men talking.  And they’re looking at me.

When I next look, there’s just one and he’s heading straight for me.  I can’t see the other.  And then …. he’s to my left – coming round the side of the spoil heap.  Now he’s in the trench and has my arms pinned behind my back.  The other one is in the trench too – punching me hard in the stomach.  So hard.  I keep asking them ‘why’?  And then I wake up.  I have no idea what’s going on.  Where did that come from?

Annie has no problem with this – “that’s easy” she says, “you’re about to have an operation – it’ll hurt”.

I speak to a Macmillan nurse in the week – very helpful – gave me a couple of pointers; “do you a have a specialist nurse to talk to?” No.  “Pnuemonectomies are relatively rare (i.e. not routine) – ask them how many they do and how the patients are doing”. That could be a scary one.

A couple of phone calls and I find the Cardio-Thoracic pre-admission nurse at Oxford – she’s a link between patient and surgeon (much like my lovely colorectal nurse at Milton Keynes).    She spills the beans.

“We’ve just been talking about you”. As in my dream, there are indeed two men (consultant surgeons) – Mr B and Mr S – discussing my case.  Although it turns out that Mr B has gone on holiday for 2 weeks so I imagine they have to text him – R U up 4rit?

They do about one pnuemonectomy a month – most people are doing OK.  Hmm.  Around twelve a year – I assume they’ve got the hang of it by now.

Then I receive a copy of a letter from Mr S to the other members of the team; it’s quite clear from this what’s going on – once I crack the code; I have a ‘moderately avid left hilar mass’.  Avid is a curious word to use in this context.  We talk of someone being an avid reader – I wonder if I have an intellectual tumour, with a thirst for knowledge rather than human flesh.

And then –  ‘… left pnuemonectomy for a complete R0 resection owing to (the) tumour abutting the descending main pulmonary artery’.

More code; R0 means complete removal of tumour and all surrounding tissue (good or bad) within a 50 mile radius.  He goes on to comment that ‘this would be an extensive resection for colonic metastasis but would offer the best chance…..’

So there we have it – it’s not the size or growth rate of the tumour that’s the problem – but where it is.  Location, location, location.  A pneumonectomy is a bit over the top – but it’s the only way.

Seeing it in print is so different from hearing about it.  Perhaps we only half hear things – we switch off after the initial part of the message.  But the letter makes things clearer (apart from the code).  Mr S thinks this is a sledgehammer to crack a nut – and is clearly concerned about it.  But I guess that’s my problem.  I have a curious sense of relief – almost light-headedness – about the whole thing.  I feel scared too – don’t get me wrong – but I understand the problem.

And there’s a choice – I assume it’s my choice – Mr B is happy to do it but I’ll need to wait until July before I have surgery (backlogs and volcanic eruptions not withstanding).  Mr S can do it sooner.  Today I lean towards waiting (though it depends quite how long) as it gives me more time to prepare.  Or worry – depending how you look at it.  The nurse will call me in the week to discuss my options.

Either way it now seems that we will have to cancel our summer holiday; we’ve rented a Gite in France during August with Chris and Emma and Annie’s sister Sue and her husband Tony.  And 6 bikes.   The nurse thinks that while a ‘gentle’ holiday might be a good thing – it could be stressful getting there.  A pnuemonectomy might involve a 10-day hospital stay – that would only give me about 4 weeks or so.   Annie books us a weekend in Paris at the end of October instead.

I’m in unknown territory now. The bowel was easy (ha); the world is full of people getting on with their lives having had major bowel surgery.  So too the liver – it grows back.  But losing a lung is different.  It’s all very contradictory – from one-lunged triathletes and mountain climbers to people whose voice has been reduced to a whisper (there’s a nerve that runs down from the voice-box that can be vulnerable during surgery).

So now an addition to The Plan; I’ve been concentrating on bike riding – I’d forgotten about singing.  If I couldn’t sing again I’d be in real trouble.  I have three gigs this month and two in July.  And I’ve been offered a couple of gigs in Germany in September.   So singing is a big deal.

The nurse says it may be a problem – she just doesn’t know.  It’s an outcome that cannot be predicted.  She favours looking at worst case scenarios – so that I’m not caught out by surprise.  There are two issues – risk of damage (probably low) – and effect on performance and technique (probably high).

I Google ‘singing with one lung’.  I turn up Johnny One-Lung (damn – I wanted that name).  And I find a few singers who’ve lost a lung and are still performing – they put it down to knowing how to breathe properly (i.e. using the diaphragm). The British Lung Foundation website mentions singing as therapy for people with lung conditions.  So this is good.

Now I need to learn how to breathe properly – in addition to endurance and VO2 Max. Cancer is a full-time job.

I find some breathing exercises on YouTube.  A hairy rocker talks to me about the sustained ESSSSSS (try it).  He can manage 90 seconds on a good day.  I manage 45 – given that the longest note in our songs is about 20 seconds, 45 in more than enough.   He demonstrates the technique from a side view.  I now realise that people I see with beer bellies have not let themselves go – they’re simply breathing with their diaphragms.   Respect.

Emma calls and offers me a new ride for Sunday morning – the so-called ‘Iron Man’ route – a 22 mile undulating circuit of North Bucks/South Northants (where she trains for her triathlons).  I’m not sure – we compromise by adding another 5 miles or so on to my route.  And as I’m about to find out, Emma does not play nice.

It starts to rain as we set off – a very fine mist – like a greenhouse watering system on its lowest setting.   And then the sun comes out.  I get off to a good start – at one stage I’m managing 26 mph on the flat.  Emma is unusually quiet sitting on my rear wheel.  I put this down to a late night.  At 10 miles I’m still on the front – and we reach the point where we have a choice – turn left to take us back home or carry straight on.  She says she’s fine – and the rain returns.  At 13 miles we hit a long, imperceptible, drag.  I’m starting to feel it now.   Emma is still behind – that must have been some party.  She says her eyes hurt and she can’t see properly, but being the little trooper she is, gamely hangs on my rear wheel.  The only way that I know I must be going up hill is because my speed drops quite dramatically to 11mph. If the Ancient Greeks had invented the bicycle they’ve have given us an Equation for this – Dragging pies and beer up any incline = hard work.

I’m feeling sick – I have that miracle energy food of discerning cyclists everywhere – a fig roll.  Forget your Gels and your energy drinks – a fig roll is good for 30’ sustained effort in a convenient, easy to handle, package.

There are a number of points where we could turn for home but I have to go on.  My Equation:  Endurance = hurting and carrying on.

At 18 miles I start to feel better and then Emma comes flying past me shouting, “Come on then, let’s see what you’ve got”. The oldest trick in the book.  I’ve been on the front for most of the ride while she has played on my sympathy – and only expending about 70% of her normal effort because on the slipstream effect.

We race up to the sort sharp climb just before home – she’ll manage it easily – and then she misses the turning.  I nearly fall off laughing.  I hit the front door first; 20.3 miles in 1hour 23 minutes.  Not bad all things being considered.  We agree a return match – and I set myself a target of 1hour 20’.  (I don’t know why I do this but I’m surrounded by sporty people and they all talk about PBs and target times – I guess it’s catching).

My lungs finish off their Sunday workout with a 2-hour gig in the evening.  To the people around me – my family and friends – this is nothing special.  A friend, Lyn, says, “I suppose we all expect you to breeze through this”.  Just as long as I don’t wheeze through it.  A line in the consultant’s letters sums it up perfectly; ‘his medical history is otherwise unremarkable’.   Unremarkable is good.  Unremarkable is something to aspire to.

I decide to stop Googling lung matters.  I’ve had enough.  I’ll wait to find out if Mr B answered his text message.

 

18th June 2010

it’s all a bit too soon.

5.30pm Thursday 17th June.

Me: I’ve got a date for surgery

Annie: When?

Me: I don’t know.  There’s a message on the answer phone asking me to call back – but when I did the office was closed.

Annie: the phoney war is over.

8.00am Friday 18th June.

Me: is JM there please? – She left a message for me yesterday.

Nurse: No – but your surgery will be next week.

Me: whaaaatttt?  When?

Nurse: She wants to tell you herself

Me: but you’ve just told me – when next week? – I need to know – things to organise.  It’s a bit soon.

Nurse: She wants to tell you herself.  I’ll get her to call back.

9.00am Friday 18th June.

I’m in the supermarket and the tension is getting to me.  I can’t think straight.  Next week – I didn’t expect to be called for next week – I’ve not even had the ‘suitability for surgery assessment yet’. Do I shop for one or two?  Strawberries are on offer – but ….

No – it’s too soon; next week is really busy;

Monday: gig in Leicester

Tuesday; fret (and some work)

Wednesday; bit more fretting and possibly some panicking (if time)

Thursday; serious worrying (and a bit more work)

Friday; gig in Milton Keynes

Saturday; trip to Manchester to see Annie’s sister and husband before they return to Australia

Sunday; bike ride with Emma – and relax.

10.45am Friday 18th June

The pre-admission nurse calls to confirm that there’s a slot on Tuesday and they want me in on Monday for 2.00pm.  There – that’s it.  Done.

I say that’s taken me by surprise – I was expecting to have the ‘suitability for surgery’ assessment first.  “No time to organise this – anyway we’ve been reading your blog – anyone who can post a time of 1hour 23’ for 20.3 miles will walk this”. I made the last bit up.  They’re just going to go4rit.

I explain I need time to organise things – I don’t even have a clean pair of pyjamas. “You’d better get down to M&S then”. She’s wearing me down – not that I can afford to be too choosy. “A slot’s come up on Tuesday and we’ve kept you waiting long enough”.

They’ve obviously had a postcard from Mr B.  They’ve decided to try a sleeve resection first – then while the bonnet’s open, send the tumour and surrounding tissue off to the lab for analysis – if the margins are clear, they’ll close down and give me a good clean and polish.  If not, they’ll remove the whole lung. “It’ll save us opening you up twice”. Too right.

It’ll be a long operation.  What do they do while they wait for the results?  Sit around smoking, telling anecdotes, playing cards, reading books?  If it’s anything like Holby City or Casualty there’s probably time for a couple of extra-marital affairs and a major disaster involving the latte machine.

A sleeve resection with clear margins is the best possible outcome.  I don’t want to get my hopes up too much though – when I had the bowel tumour removed they decided, as the operation was going well, not to use the ‘safety net’ of an ileostomy (bag on the small colon to act as a bypass while the large colon is healing).  A week later the join leaks, I’m in intensive care and the proud owner of an ileostomy bag.  And no time to get matching shoes.

I’ll go into work this afternoon and arrange cover; could be some time.  In the meantime I dedicate a song to my left lung;

All of me – please don’t take all of me/Can’t you see you’re no good without me?

 

 

20th June 2010

don’t kiss your wife.

Annie is entering the last few weeks of her teaching career.  She’s been umming and ahhing over retiring for ages.  She loves her children but is tired of all the lost weekends and evenings.  We keep thinking back to Neil and his mandolin encounter of the $3,000 kind – you’ll never run out of money, you’ll only run out of time.  And time is what we need – or rather, want – right now.

She tells her class she won’t becoming back in September; “Nooooooooooo Miss.  Can’t you stay till we leave?” Five minutes later; “Miss, when you go can we have a party?” Then; “Miss can we put you on FaceBook?” And finally; “Miss, can I have your iPhone?”

A few weeks ago she was meant to join them bounding and bounding in North Yorkshire, but cancelled in case I was called in for surgery.  Her children quizzed her about her absence; “is it because you’re pregnant Miss?”

On Friday she came home with a tale about how they had sent her out of the room for 5 minutes; “Trust us Miss”. When she returns there’s a huddle and frantic whispering.  “Miss, have you got all the Alicia Keys CDS?” She nods – more whispering; “Now what are we gonna to do?”

This was not the only thing she came home with on Friday.  She can’t talk.  The glands in her throat are swollen and she has a cough.  Annie never gets ill.  30-odd years of teaching has given her sufficient protection against most bugs and germs.  But this one has managed to get under the wire.  I immediately go into panic mode and consult Google – if I turn up on Monday with similar symptoms they may not admit me.  Anaesthesia and bugs – particularly any affecting the chest or breathing – do not mix.  Wearing a mask and sleeping in the shed may be a bit over the top so I take a lemsip instead, just in case (this was never going to be a time for rational thinking).

I look back at some of the things I wrote about my previous stay in the John Radcliffe Hospital (October 2006).  I appear to make quick progress after the liver resection and then, after about 4 weeks, I seem to go backwards.  I can’t sing or play the guitar because of the pain in my chest – I can’t get my breath (and that was with 2 lungs).  It’s about 7 weeks before the pain starts to go.  He’s right of course; “Pain is temporary” (Lance Armstrong).  Just need to remember that.

It doesn’t do to read too much though; not right now anyway.  The first time I looked back it all seemed a little unreal – as if it had all happened to someone else.  And it was a useful yardstick, a measure of progress.  But I never – and I emphasise that word – expected to have to go through it again.

I make a list of things to focus on for when I come out – projects, treats, goals.  I refuse to believe that I will not be able to ride my bike again and toy with the idea of trading my racing bike in for a newer model.  I don’t need one; it’s perfectly good.  But it’s not about needs – it’s about wants. But it’s more than that – it’s a symbol; it represents something – hope.  All the time the bike is hanging on a wall in my garage it means I will ride it again one day.

I missed my riding buddy this weekend.  Emma is taking part in the London-Brighton bike ride, doing her bit for the British Heart Foundation.   It’s cold at 7.00am and windy.  A few miles in and I know it’s going to be a slow one – I’m battling the wind rather than cruising.  I give up thoughts of trying to improve on last week and settle for getting round.  Annie is still ill and I’m not feeling my usual sparky self.

At one point I’m passing through fields on either side of the road and the wind brings the smell of doughnuts.  This lemsip must be strong stuff – it takes me back to Morphine and penguins (March 2006).  There’s not a house or soul around – but doughnuts it most definitely is.  A couple of miles on and I hit a retail shopping park and I realise it’s the Tesco bakery calling the faithful to Sunday worship.  And then – if this wasn’t enough – the wind announces the presence ahead of the Milton Keynes sewage works.

I’m about halfway round my circuit now and Nature calls.  There is no suitable place to answer; I have not the means either – I’m wearing a pair of lycra bib tights – the sort of thing that, when I practice diaphragm breathing, makes me look like a pregnant Max Wall.

At about a mile to go my bike computer confirms that it’s going to be slower than last week – I put my head down and with the aid of gravity, and a change in wind direction, manage to get up to 30.6 mph.  I bet I won’t do that again.  Not self-propelled anyway.  I arrive home in a time of 1hour 27’.  I’d probably have been quicker with Emma sharing the load on the front.  Then I remember some basic physics – cold air is more dense that warm air.  So I reconcile being less than sparky, a dodgy lung and riding through thick air.  That makes me feel better because, as every competitor knows, it’s not about whether you win or lose but how you place the blame.

Emma calls later to say that she did the 56 mile ride in 4hours 4’.  That’s an impressive time, given that she had to battle through 26,000 other riders – but she crowns it by riding (rather than walking as most do) up Ditchling Beacon – a feat I’ve never managed.

With surgery now imminent it’s too late to improve my time so I need another challenge.  Emma comes up with an ambitious – preposterous, even – idea for next summer: We organise a London–Paris bike ride to raise money for cancer charities.  She and I and whoever else we can rope in.  Now that would be something to write home about.

My list goes on.  I recently bought a second-hand Leica digital camera on fleabay; it has a shutter speed dial on the top plate, an aperture ring – and a great big fat f2.0 Leica lens on the front.  It’s just ‘leic-a’ real camera – looks as if it should run on valves rather than microprocessors.  A museum piece at only 5MP but that’s good enough for my needs.  It has a very nice black and white setting so I plan a series of B&W portraits of friends and family.

 

And then places; Paris, Vienna, Toledo, Prague….  Annie’s already booked us a weekend in Paris.

I have to be careful not to get carried away here – looking back at earlier entries I started similar lists at other critical times – for example, digitising all my VHS cassettes (yawn) and digitising my boxes of 35mm slides.  I give myself a tick for the slides – some of them are done.  Life is just too short to be stuck in front of a computer.  But plans are important – I have a new equation; making plans = a future.

So here we go again – once more into the unknown.  The known bits are easy – the smell of hospital mince and drains and the noise at night (don’t forget to pack ear plugs).  It seems perverse – you usually go into hospital feeling ill and come out feeling better.  I’m going in feeling well and will come out a (albeit temporary) wreck.

I go to the chemist for some medication for Annie; while there I explain to the pharmacist that I’m going into hospital on Monday for surgery and ask if there’s anything I can do to ensure that I do catch whatever she’s got.  She thinks for a minute; “don’t kiss your wife”.

So that’s it.  Nuff said – time to go.  Thanks to everyone who sent messages of support by phone, email or comments on my blog.  Annie and I really appreciate you taking the time.  I’m prepared for the worst and will hope for the best; I hope (very much) for a sleeve resection (with clear margins) – but I won’t hold my breath.

 

23rd June 2010

welcome to the Hotel Cardiothoracic *****

“I’ll just see if your room is ready”. She disappears around a corner and Annie and I look at each other – bemused – not quite believing what we are seeing.  We are summoned to a large, airy private room (I whisper to Annie – “do they know we’re NHS?”) with en-suite facilities, TV/internet access, decorated in white with just a hint of the palest blue.  I look down the corridor – 25 rooms just like this.  All this on the NHS the day before the Budget.

I glance at the welcome pack ‘if your admission was planned we will have already started planning for your discharge’.  I think to myself – no sooner in than out.  How prophetic this would become.

My first reaction is YES! – I won’t need the earplugs.  Annie reminds me – “no more crazy guys in the middle of the night” (see March 2006).  It’s going to be quiet.

We sit around waiting for something to happen – on chairs – I don’t want to mess the newly made bed just yet.  A staff nurse comes in and explains what’s going to happen and how the ward works and so on.  She’s very nice and welcoming.

A young doctor comes in, introduces herself as Maddy, and we go through the pre-admission tests.  The big one is the lung function test – fail this and I can leave now.  I prance around the room like a boxer waiting to go into the ring.  I step up to the machine and blow.  I score 82%.  Maddy is very pleased. The machine takes into account my age.  “This is very good – this is plenty,” she says.  We do a couple more just to be sure it wasn’t a fluke.   She’s very happy and so am I – all this bike riding has paid off.  I like Maddy – she’s encouraging, helpful and has a sense of humour.  A blood test, ECG and an X-ray and I’m pronounced good to go.

And then a visit from the great man and his team; he goes through the op again – they’ll try for a left upper lobectomy “and then we’ll send it of to the Martians and if it’s all OK we’ll close you up.” I laugh – but he stares straight back at me.  I’m thinking – you made a joke, it’s very good (implying it’s going to take a while to get the results back from the lab) – why are you not smiling?  But he didn’t make a joke. I misheard; margins not Martians.  “Any questions?”No” – well yes but I can’t think what they are right now.

Supper comes round and Annie waits until I finish my vegetable stroganoff and then leaves.  It’s about 6.30 and suddenly it’s all very quite.  I lie on the bed and stare at the ceiling.  The door is closed and I can see how this hotel room could easily seem like a prison.

About 8.00pm one of the surgical team comes to see me with a consent form.   He talks through the risks; mortality (4%) leakage into the air cavity (5-20%).  I ask about the risk to the vocal chords “yes the nerves can sometimes get a bit mangled” – but he doesn’t have the numbers for this.  He draws a capital letter ‘L’ and circles it on my left shoulder joint and then a large arrow down to the left side of my chest.  When I look in the mirror later that night it looks like a tattoo.

I try and lighten the mood a little by references to cutting along the dotted line.  Nothing – this is worse than playing the Glasgow Empire (traditional burial ground of many a comedian).  It gets worse; “physical activity will need to be curtailed”. Does he really mean that? – Surely he means reduced.  I’d expect that.  But like the use of the word avid to describe my tumour I’m puzzled by the choice of words.  Doctors and Patients; two peoples divided by a common language.

It’s a long lonely night.  I don’t sleep well – and a 6.00am when my blood pressure is taken I’m feeling a bit down.  At 7.30 a nurse brings a cup of tea and a couple of slices of toast.  I have the first piece in my mouth when an anaesthetist walks in; “you’re not going to eat that are you?” Before I can answer another nurse rushes into the room and slams a NIL By Mouth sign on my bed.  Too late.   He’s not happy – I should have had this at 6.00.  Not a good start.  I try and lighten the mood but another humour bypass.

He explains how he’s going to manage the pain; he knows all about Morphine and the Penguins (that’s in my notes?) but we agree to give it another go.  He offers a happy pill (to relax me) before I go down to surgery – which I accept  (I’d rather have a crutch than fall over).

He’ll bring me round quickly after the op; “you’ll have some memory of the procedure” – fine – just as long as I don’t wake up during. “You’ll be sitting up and I’ll be removing a tube from your throat.  This is quite normal.  We need to get you coughing as soon as possible”. Great.   Don’t they have suction for this?  They always say “more suction” on Holby City.  Perhaps it’s the Budget kicking in early.

It’s now 8.00am and I’m third on the list – so I can expect to go around 2.00pm.  I have a shower – with an antiseptic shower gel – rub peanut oil up each nostril and finish with a good swill of mouthwash (they take hygiene very seriously).   I decide to go and get a newspaper and wander outside for a last few gulps of fresh air.  Already the day is warming up and people are swarming into the hospital.   A dumper truck is stuck in traffic and clouds of black noxious fumes undo all my good work.  The outside world is too risky and I hurry back inside.

At 12.00 the staff nurse tells me Number 2 has just gone down – it’ll be a quickie so not long now.  Well – as long as Mr S has his lunch.  I don’t want him hungry over what could be a long operation.

At 2.30 comes the first signs that things are not right.  There’s an emergency but Mr S is confident he’ll be able to fit me in.  Hmm.  At 3.00 I know it’s not going to happen.  In fact I don’t want it to happen – not now anyway.  It’s not like a car service.  These people work a long day and need to fit and focussed.  I prepare myself for cancellation.  I mention all this to the staff nurse at 4.00 – “well I wouldn’t want it now either”. I’m hungry and thirsty, having had nothing but a mouthful of toast and a few sips of water since first thing this morning.  But they can’t officially cancel it (and feed me) until the paperwork is finished.  There’s a chance it could be rescheduled to Friday afternoon.   Mr S is not operating that day but he offers to come in and ‘fit me in’.  So – what to do with me?

If it was a weekend I could have a 48-hour pass.  But it’s a weekday.  Lots of conferring – finally agree that I can go home but only after Mr S has been to see me.  I must be back within 48 hours or they’ll have to discharge me and they’ll lose the bed.

It’s after six by the time I see him.  He’s very apologetic – but hey – these things happen.  I wouldn’t want him operating on me at the end of a long day.  He plans to do it Friday afternoon but cannot confirm – he has a clinic in Northampton in the morning and the people who schedule the operating theatre and his time have gone home.  There’s a hint of humanity in his explanation and for the first time I see him as a person rather than a surgeon.

Annie and I are both quiet in the car going home.  It’s been a roller coaster for both of us – in just the same way as I have to psyche myself up each time I get the wobbles, she has to do the same.  We both want it over with now.

I get a call this morning; “if he can leave Northampton by 12.00 we can have you on the table by 1.30.” The main course?   I don’t consider the ‘if not’ at this stage.

It all sounds very exciting.  I can see this turning into an episode of Casualty or Holby City – Consultant-Surgeon in mad dash along the A45 – patient waiting (patiently) on table – nurses and medics fretting “is he here yet?”

Then Scotty from Star Trek comes in struggling with an Oxygen cylinder; “I cannae hold it….”

Now it just needs Dr Nick Riviera (graduate of the Hollywood Upstairs Medical College) to put in an appearance with his set of ‘How To’ Surgical DVDs; “Hi, Everybody” “Hi, Dr Nick”.

This morphine is really good stuff.

23rd June 2010

the wobbly bridge

I have friend called Barbara. We’ve never actually met but we’ve kept in touch ever since she first came across my Blog back in 2006. She supports people with this poxy disease and was kind enough to recommend my book to her colleagues and patients.

In another time we might have corresponded via pen and ink – and I would have kept the letters safe as a reminder of what I’ve been through.  For now Barbara – and everyone else who has emailed or commented on my Blog – is safe in my back up Hard Drive.  Not so elegant or convenient for others who might be interested but – hey that’s the world we live in.

Barbara describes the place I am now as ‘The Wobbly Bridge’.   The more I think about it the more I realise what a brilliant analogy this is.  I can see myself high above a ravine, wind rocking a fragile rope bridge.  There are hands reaching out to me from either end – Annie, friends, family, doctors, and nurses – but I’m stuck in the middle on my own.  And getting across is entirely up to me.

Barbara could not know quite how apposite this analogy is – because I lost my head for heights a long time ago (up a 40’ telegraph pole in a gale if truth be told).  So this particular wobbly bridge is a very scary place to be.

Right now I’m back on terra firma – but tomorrow I will have to venture out alone again.  The starting point is not the moment the happy pill kicks in – it’s when Annie drives out of the hospital car park.  That’s the real point of no return. To be sure – I can still retrace my steps if I wanted to – the bridge won’t really start to wobble until the men in gowns come for me.   But to go back would be a very selfish thing to do.  Although it is only me who can make this particular journey – I carry others with me.  Not as a burden – but as a reason for the journey – my reward for getting across.  Annie received the following from my lovely stepdaughter Helen “…he’s strong and I believe in him”.

The bridge feels miles away as I sit in the garden soaking up the afternoon sun.  I’m trying to decide whether or not to go and watch a bunch of ill-tempered millionaires destroying the hopes and dreams of millions of people in this country (Budget speech or England game – take your pick).

Alone in my room, watching the clock count down, the ground beneath my feet will feel decidedly shaky.

I’m not a religious man but I’m pleased to receive the prayers of those who are.  I have my own moral guide – “our role is to help each other through this thing – what ever it might turn out to be.” Kurt Vonnegut.

24th June 2010

there’s a new bike with my name on it.

This is really weird.  I’m sitting beside my step-daughter Helen as she shows me some of the millions (seemingly) of photographs she’s taken from her recent posting to Ascension Isle (she’s a Met Office forecaster) when the phone rings.  It’s the hospital – Mr S has cancelled his clinic in Northampton – and so we are back on target for surgery tomorrow.   So – no mad dash down the A45.  Just meetings and catching up on paperwork, before he sharpens his knife.

As I hear the message my demeanour changes – suddenly I get really nervous.  Butterflies in my stomach – like the first time I ever sang in public.  I didn’t feel like this on Monday or Tuesday.   I mention it to Annie when she comes home from work.  She thinks about it; “well – he’s not going to cancel twice”. I guess that’s it – there was always the chance of the ‘get out of jail’ card on Tuesday.  But she’s right – this really is it now – the part of The Wobbly Bridge I hadn’t anticipated.

This morning I went to my local bike shop to drool at a new bike.  The owner (another member of the cancer family) has one in my size.  He’ll keep it aside for me – he understands perfectly well why I cannot commit to it right now.  But as soon as I’m out of hospital, Annie will collect it.  And I’ll look at it every day until I can ride it.

Once again I thank you all for your kind wishes.  I should be in for 7-10 days depending on how much of the lung they take and how quickly I recover.  Physically I’ve done as much preparation as I can.  It’s all in my head from now on.

Bye for now.

 

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