december 2010

December 16th 2010

Special day number 5; Mr 5%

On the face of it there seems little that Fred Astaire and Chumbawamba might have in common.  To the best of my knowledge they’ve never met, appeared together or covered each other’s songs.  And yet …..

When it became clear earlier in the year that my cancer had returned, a friend, Sue, sent me the lyrics to ‘Pick yourself up’.  I read through the song and lost myself in the chorus; ‘I pick myself up/ dust myself down/ and start all over again’.  I see Fred and Ginger singing and dancing and I remember thinking – this is going to be my song.  And then my brain does one of those things that brains often do; my thoughts are happily heading in one direction and then the mind takes a sharp turn down a side road and I find myself singing ‘I get knocked down/ But I get up again/ You’re never going to keep me down’ (repeat).  And now the two are forever intertwined – ‘I get knocked down/ But I get up again/ And start all over again’.

Which is just as well.

There are few things in life more shocking or more terrifying than being told you have cancer.  Once such however – especially after a gap of a few uneventful years – is being told that your cancer has returned.  The first time, you submit to the pain, the discomfort and the degradation of treatment, as an innocent with no real idea of what to expect, in the belief that it will make you better.  At the end of this process your natural response is to say – I never want to go through that again.  But that is precisely what you have to do when cancer returns.

2010 has been a year of disappointments and loss.  It would be tedious for me to catalogue them all – and tedious for you to have to read such a list.  The optimism of the summer – “you’ll be back on your bike in 6 weeks” – has dissipated.  Surgery was the easy part.  Now, 6 month on, I’m in more pain and discomfort than I was back then.  And with a greater sense of uncertainty; sometimes I think the light at the end of the tunnel is from an oncoming train.

I guess I was too cocky.  Back in January I flicked through my new pocket diary to December 16th and wrote in red Special Day Number 5.  And just to push home the point that this really would be a special day I also wrote Mr. 5% – (this a title bestowed on me by a work colleague).  Back in 2005 the 5-year survival rate for advanced bowel cancer was around 5%.

For those unfamiliar with special days, I follow the Lance Armstrong approach – we are survivors from the moment we are diagnosed (rather than when we get the all clear).  I became a cancer survivor on December 16th 2005.  Armstrong also advocates that each anniversary of diagnosis be celebrated as a special day.  So each December 16th we have a bottle of fizz and acknowledge the fact that we’ve got this far.  And for anyone with cancer the 5th year is an especially big deal because many of the survival tables rarely published results beyond 5 years.

As I celebrate, it is so very different from how I imagined it would be.  I really did expect to be riding off into the sunset never again to return to Cancer-World.  But here I am – or rather here we are – Annie is stuck here too – fearful, exhausted, noses pressed up against the bars, wondering if we’re ever going to get out of this place.

It’s been around 5 weeks or so since I finished radiotherapy and side effects are still making themselves felt.  I have radiation pneumonitis (inflammation of the lung caused by radiotherapy).  If left untreated it leads to pulmonary fibrosis (permanent scarring of the lung).  Pneumonitis typically appears anywhere from 2 weeks to 6 months after the end of radiotherapy.  This is not mentioned on the ‘Radiotherapy and Lung Cancer’ leaflet I was given at the beginning of my treatment.  I look back to the consent form – it’s there – risk No. 1.  How did I miss it?  I guess I just concentrated on the headlines – skin burn and cough – and ignored the rest.

Eating is painful – I mean really painful.  With each swallow there’s a stabbing sensation on the right-hand side of my chest which goes through to my back, up into my right ear and down under my right arm.    Even when I’m not eating there’s residual pain in my shoulders and back.  I’ve lost over a stone.  In case anyone is wondering or is envious of this achievement, this is not a weight loss programme I would endorse.

I’ve come to the view that radiotherapy to the chest can be very unpleasant – much more so than I originally anticipated.  Radiotherapy itself doesn’t hurt – it’s not like chemo where you can feel the side effects as the drugs are being administered.  It also continues to work for weeks after treatment stops.  Doing what exactly?  Radiotherapy interferes with the DNA of cancer cells.  But it also interferes with the DNA of healthy cells – the so-called ‘collateral damage’.  So what strange mutation is now going on inside my body?

My GP is puzzled and concerned by all this.  He wonders if something more sinister is going on.  He uses the words ‘tumour seedlings’ and ‘bones’ in the same sentence; “It would explain the pain”.  He mentions a bone scan. I hope he’s just thinking aloud.

He’s new to the practice.  I’m lucky – he’s enthusiastic, listens and is open to new ideas.  He also asks Annie for her diagnosis as well.  He brings himself up to speed with my notes; “Nothing’s straightforward with you is it?” and then tells me about his mother in South Africa who’s permanently on Warfarin and “drinks like a fish”. And rarely has her INR checked.  Perhaps they’re built of sterner stuff down there.  So he knows some of my secrets and I know some of his.  I think we’re going to get on just fine.

Had a follow-up at the cardio unit at MK Hospital yesterday.  The trace from the ECG is a textbook example of a regular heartbeat.  I also have an ECHO test to see if there’s any underlying heart problem – and although my heart is essentially fine there’s a slight abnormality in one of the valves.   I’m a little disappointed at first – it’s a bit like when you take your car into the garage because there’s a problem with the clutch and the mechanic sucks his teeth and tells you the gearbox sounds a bit dodgy too.

I ask if I can come off the Warfarin and Amiodarone.  Yes and No.  The doctor is very good – she understands my concerns about Amiodarone; “it does have very serious long term side effects”. And given its half-life of 58 days I estimate it’s going to take over a year to leave my body once I stop. She also understands my dilemma about Warfarin and the voice procedure.  But she wants to be absolutely sure about my heart so she suggests I have a 24-hour heart monitor fitted at the end of January just to make sure everything’s hunky dory.  I’ll need to stay on Amiodarone until this happens.  But I can come off the Warfarin on Christmas Eve.  So there is a Father Christmas after all.  As soon as we get home from the hospital Annie phones Mr. ENT’s secretary and tells her the good news about the Warfarin – and I’m back on the list.

There are other bright spots on the horizon; Annie’s eldest Chris and his girlfriend Emma (my bike buddy) are getting married next year.  And Annie’s youngest Dan is off traveling around Asia for 6 months.  This is all very good timing – the Lioness can fuss and plan and fret about her cubs for a change.

And there’s a new mountain bike frame (sparkly black – looks like someone dropped some glitter in the paint can) sitting in the corner of my study calling out for a bit of fettling.  It’ll have to wait – I promised Annie I’d put up some shelves in the bathroom first.  And she’s been patient long enough.

So I look forward to starting again in 2011 and leaving this year well and truly behind.  Annie and I wish you all a Merry Christmas and a Happy New Year. And I hope to resolve the eating problem by December 25th.   I do not fancy a liquidized Christmas dinner.



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