september 2010

September 7th 2010

a perfect day

Had my mother been born in Ancient Greece, then, apart from making nonsense of my existence, she would most likely have been a Stoic. No matter what disaster befell her though out her life – and she had more than her fair share – at the age of 12 she was burnt in a fire which left her badly scarred and when I was 12 had to cope with the start of what was to become a terminal illness for my father.  She would always pass such events off with “never mind – worse things happen at sea”.

But this morning, the sea seems a long way from its role as progenitor of disaster.  Far from it – the sea is calm and shimmering in the sun.  It’s about 10 in the morning and I’m sitting on the terrace of a hotel with a coffee, watching this silvery ribbon fray as the surf crashes against the shore  (you get the picture).

It’s warm – very warm.  After about half an hour, uncomfortably so.  It’s September, it’s sunny – and it’s England.  Cancer and hospitals seem miles away (about 150 to be precise).

Annie has new best friend.  After endless phone calls and promises to return calls, which never materialise, she eventually tries the secretary of the oncologist in Oxford that I am to be referred to.  But, like the heart unit in MK, she’s never heard of me.  More worrying still – she’s never heard of Mr S.  Yet we have been given to understand that conversations between these doctors have already taken place.  She (the secretary) is horrified at the delays we’ve put up with.  Or rather – Annie’s put up with.  I’m still looking for all these unfortunate things happening at sea.  “If it were my husband I’d be writing a letter of complaint to the hospital right now”. She offers to make a few phone calls and find out what’s happening.  She does more than that – a couple of days later we get a copy of the referral letter from Mr S; it’s almost there – a referral to Oxford for ‘possible residual tumour’, a referral to the ENT consultant at Northampton to examine my vocal palsy – but the referral to the MK heart unit is missing.  Well – 2 out of 3 isn’t bad I suppose.

My mother’s approach to disaster, which I have readily subscribed to for most of my life, is starting to wear a bit thin.  It certainly doesn’t cut the ice with Annie who is frustrated by the lack of progress – given that we saw Mr S a month ago.  A month is a long time as far as cancer’s concerned.  And at the risk of beating the same old drum – the heart and vocal problems are slowing my recovery from surgery.  And if I am going to have to go through radio or chemotherapy I need to be feeling good.

I know that Annie has had a tough summer and, although not regretting the decision to retire, will be feeling a bit lost when the term starts again.  So I arrange to take us away for few days when she would have been going back.  I don’t tell her where but she’s delighted when we arrive in Aldeburgh on the Suffolk coast.  The hotel room has a sea-view, which is the icing on the cake as far as she’s concerned.  That and the fluffy towels and nice smellies.

Aldeburgh is much loved by the chattering classes – in the hotel bar for a pre-prandial drink are such a group.  With exquisite timing there’s a lull in the background babble just as a voice loudly proclaims; “I’ve got a pony – and a horse”.

We wander through the town looking for somewhere to eat.  The Aldeburgh fish and chip shop featured in a Sunday supplement a while back so we decide to try it out.  There’s a queue half way down the road.  It’s a real mix and good-natured – people emerge from the pub next door with drinks for friends in line.  The only impatience seems to be from the 4x4s waiting opposite (dads in cars while mums and children queue).  Perhaps in addition to putting their children down for a school place at birth, they should also consider putting them down for a place in the queue.

It takes over half an hour to get to the counter – and then the couple in front order 6 haddock and 5 cod – so we wait again for a fresh batch.  People (sans 4x4s) are sitting on the sea wall eating theirs and it seems as good a place as any.  And if you were wondering – it really was worth the wait.

At around six next morning a gap in curtains produces a red scar down the wall opposite.  I get up to look out the window at a bright red sun rising over the horizon.  We’re out early to take some photos while the light is good before wandering back to the hotel for a late breakfast.

We’re so lucky with the weather – we laze in the sun, reading, people watching and just chilling out.  It is bliss.

In the evening we discover that the Aldeburgh cinema is showing The Illusionist – a film we’ve been desperate to see.   So we sit with around 50 other people (including a famous film actor) in this tiny art-deco theatre watching a beautifully made story slowly unfold.  Afterwards we find a restaurant a few doors down and have a late supper and treat ourselves to a glass of fizzy.   Apart from the fact that the waitress cannot hear me when I speak, cancer (and school for that matter) seems a million miles away.

As we walk back to the hotel along the edge of the beach we see something we simply cannot see at home – the night sky.  There’s a bright object in the Eastern sky – I take it to be Saturn; I have some binoculars in the car so when we get back to the hotel I confirm that it is indeed that planet.  They’re not powerful enough to show individual rings, but the quatrefoil shape – which is what Galileo first saw through his rudimentary telescope – is unmistakable.

It seems appropriate that Saturn – named for the Roman God of Abundance and Peace – should watch down on us as we sit and stare up into the sky.  Everyone deserves to have a perfect day; this was ours.  A song by Mark Knopfler comes into my mind;

It’s the end of a perfect day/for surfer boys and girls/ the sun’s dropping down in the bay/and falling off the world/there’s a diamond in the sky/our evening star/in our Shangri-La.

September 17th 2010

Doctor doctor

Obfuscate; that’s a fine word and one I’ve wanted to use for ages.  But all in good time – back to the song; Doctor, Doctor gimme the news/ I’ve got  a – bad case of cancer blues/no pills are gonna cure my ills/ I’ve got a – bad case of cancer blues.

My wish has been granted – and not just once; Monday the postman delivered copies of three referral letters – and taking what was obviously a belt and braces approach, three more copies arrived on Tuesday.  And now, a few days later yet another doctor is giving me news.  I’m thinking-  she’s very young but explains everything clearly – and then the ‘but’ made me realise I must be getting old.  Patronising the young is a sure sign.

We’re in Oxford at the Cancer and Haematology Centre.  It turns out that although the margins were clear – medi-speak for removing the tumour in its entirety and leaving nothing behind – the tissue itself contains ‘numerous tumour seedlings’.  These are cancer cells too small to be seen by the surgeon – or the CT scan for that matter.  But they’re alive and kicking on a Petri dish.

These are the ghosts of tumours yet to come; how prescient my first blog back in April turned out to be.  An Exorcism is required and I will have Radiotherapy every day for 4 weeks.

We’re up at six in order to get to Oxford first thing and on the way back I need sustenance.  I spot a garden centre and suggest to Annie that we pop in for a coffee and something to eat; “Noooooooo – we’ve just joined the National Trust and now we’re eating in a garden centre café – all in the same week”.  For Annie, each of these on its own would herald the (reluctant) start of a life beyond work.   But the two together is clearly a bit much.  But she’s a brave lass and endures her worst nightmare for the sake of my coffee.

It occurs to each of us (both of us?) that back in July when we saw Mr. S and he uttered the unnerving “Oh that’s disappointing” when looking at the results of my lab tests on his computer – that this reaction was not, as he claimed at the time, caused by a lack of information.  It occurs to both of us that he knew or suspected – that in spite of his skill and best efforts, the tumour was not alone.

I’m not sure if this is an example of obfuscation (but hey – I get to use the word) – or if I’m being unfair.  What is clear however that for at least a month and possibly two – the existence of these tumour seedlings has been known about – except by us.  And comments about the tumour being something other than a bowel secondary, and offers to telephone with information (which never materialised) have all served to confuse and create uncertainty.

That was last week.  This week I’m in Oxford again – having a scan to identify the target area for radiotherapy.  “Have you been looking things up on the Internet and scaring yourself?” I confess I have had the odd look here and there.  “You don’t want to believe everything you read”. They make it sound like a walk in the park.  “You’ll be sore and tired but it won’t hurt”. I get tattooed (it’s a big circle with a cross in the centre and the legend AIM HERE) so that the radiographers will know where to point their Death-Ray.

I keep making references to Ming the Merciless and his Death-Ray – but Annie doesn’t get it.  I’m given a booklet on side-effects.  Any radiotherapy involving the lung is complex – the lung, heart, gullet and throat are all compromised in some way.  It’s a shame that bowel cancer secondaries don’t end up on the tip of the little finger.  They could zap away to their hearts content.

Then a visit to an Occupational Health Practice to assess my ‘long term effectiveness’ on behalf of my employer.   I do better at this than my old Dad – when he became ill he was called in to the office on a Friday and told not to come back on Monday.  My effectiveness, thankfully, is not in question.

I sometimes wonder when I write this blog why I record the minutiae – the bits about Annie and the NT, or bathroom refurbishment and so on.  I guess I do it to remind myself that cancer is not the be all and end all of everything.  That life is made up of the minutiae.  Although cancer is claiming the limelight right now, in the grand scheme of things it’s just a bit player.

Reasons to be cheerful No. 17a

Managed to don the Lycra and get out on my road bike.  Yeah.  Only a few miles and although the flat and down hills are easy, any incline – and I mean the slightest gradient – has me panting.  But it’s a start.

Reasons to be cheerful No. 17b

Had a practice with the band last night; as I can’t sing I get to doodle about on Neil’s fancy (i.e. best) mandolin.  Which is nice.

Reasons to be cheerful No. 17c

Some men dream of owning a football team – for others, it might be a baseball team. I appear to have a team of 2-wheeled Gods and Goddesses.

Some colleagues from work are taking part in a cancer charity bike ride under the banner of The Spratley Sprinters.  Their target is £1000.   I won’t be taking part as my lycra is in the wash.

In the end they raise over £2000.  Thank you to everyone who took part and to everyone who donated.  You make a difference.

 

September 29th 2010

A Party Trick

“I can only do this once”. People are bemused. “I can sing Lady Madonna”. Now they’re impressed.  We’re standing outside the venue for Annie’s retirement party and I’m about to show the band what I can do.  I say ‘sing’ – not a wholly accurate description, but I open my mouth and go for it; “pa pa pa pah pa pa pa pa pah” – and so on (if you’re familiar with the song you’ll know this bit – if not then just indulge me).  And that’s it – the end of this section “See how she runs” comes out as a whisper.  But the ‘pah’s are loud. Very loud.  And in tune.  After they stop laughing I explain how I discovered (in the shower) that if I open my mouth really wide (as if I’ve stuck a coat hanger in it) and breathe out I could make a loud flattened ‘A’ sound.  As in ‘cat’.

Earlier in the day I demonstrate this to L (my speech therapist) and she’s impressed/concerned.  Impressed because it shows something is starting to work again – concerned because it’s what she calls a ‘non-voice’ sound.  And if I keep doing this it may be at the expense of voiced sounds.  Huh?   She demonstrates with ‘P’ and ‘B’.  The ‘Puh’ sound is just caused by air escaping through parting lips.  ‘Buh’, on the other hand, comes from the voice resonating through the vocal chamber before being forced out through the lips. All of the vowels are non-voice sounds – as are a few consonants.  It’s amazing what you can learn.  Shame it takes cancer to improve one’s education.

If I just needed to communicate with vowels and a stupid expression on my face I’d be hunky dory.  Predictive speech?

The band is playing at Annie’s party and I join them for a ‘non-vocal’ session playing mandolin and guitar.  I stand at the back alongside Tim the bass player – it’s strange not to be at the front but surprisingly relaxing and stress-free.  But my ego is too big for this to be a permanent career move.

Annie’s party is a lot of fun – ex-students and colleagues turn up to wish her well.  I’m incredibly proud of her – her approach to teaching (she’s a teacher who likes children – my own experience of school shows that there are plenty who don’t) means she is held in such high esteem and affection.  A group of twenty-somethings are standing at the back shouting “we love you Miss” and one presents her with a tomato inscribed ‘sorry for being naughty in school. XXX’.   We haven’t the heart to eat it.

In the week that follows my voice goes through a relapse – to the point where it disappears altogether.  People had said that it was suddenly sounding louder.  I thought it was having some sort of Lazarus moment – but it obviously thought better of it and sunk back on its bed.  My next meeting with L coincides with the 6-week target she had set herself for getting my voice back.  She’s still convinced something is working but thinks the problem is insufficient breath.  She writes to my GP asking for some sort of pump to aid my breathing.

She also suggests a video-X Ray: “but I don’t want to put you through this right now what with everything else that’s going on”. A video-X Ray apparently involves the barium swallow.  An unfortunate migratory bird that inadvertently flew over Chernobyl?  Or perhaps a companion piece to the Maltese Falcon?  Time will tell.

Annie’s persistence on the phone pays off (she could easily have another career in telephone sales) and I eventually get an appointment at the cardio unit at MK.  I bring my copy of the referral letter from Mr S, dated 24th August, because they’ve still not seen it.  To speed things up the nurse in charge is prepared to accept the referral without the need to see the consultant; “So – you’re wafarized to deal with this then?” She gives me that look which says she’s heard them all.  Things move quickly – a blood test, BP and an ECG – and I can expect to start the anti-coagulation treatment in about 2 days time.

Once I begin taking Wafarin I’ll need a blood test every Wednesday morning – before shooting off to Oxford for the radiotherapy.  (Oxford confirm that it’s OK to have Wafarin at the same time as radio).  The first phase of anti-coagulation will last about 6 weeks, then there’s a 3 week window of opportunity while they check to see “if conditions are right” for the Electro cardio-version therapy.  Conditions are right?  Sounds as if they’re waiting for a break in the weather.  We don’t talk about what happens if conditions are not right. “A counsellor will call you tomorrow with more details”. And then the Wafarin will continue for about another month. I’m going to need a white board or a Gant chart to deal with all this.  With any luck I should have finished with the Death Ray before they plug my heart in.

Annie buys a large wall calendar and 3 coloured pens – we mark up radio-therapy, Wafarin and speech therapy. It’s WW1 syndrome – let’s hope it’s all over by Christmas.

 

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