December 16th 2015; Cake day number 10

I had intended that this would be my the last post. When life is plodding on there is little to report – except perhaps that life is plodding on. Ten years ago I might not have been so sure. And five years ago, when my cancer returned – and when this particular blog began – my chances of reaching the 10th anniversary of diagnosis, looked decidedly dodgy. But here I am.

But I’m scheduled to have a final scan in April 2016 and so perhaps that will be the time to finally draw a line under this particular journal.

I had a scan in April this year and the oncologist, seeing no sign of the disease, was prepared to discharge me. But we insisted on one more scan – we were at the very same point in April 2010 when the final scan then turned out to be anything but.

I had a successful voice operation in October 2014 at the Queen Elizabeth Hospital in Birmingham; I can now sing again – not as I did before, but well enough to get invites to take part in the occasional gig. In October this year I managed a week’s tour of Germany with some old band mates, performing 5 gigs in 5 night. It did a lot for my confidence – a much needed boost to my morale. But it did not do a lot for my heart.

The Gods of Arrhythmia have returned with a vengeance. After the lung resection in 2010 I was diagnosed with Atrial Flutter for which I had an Ablation. This cured the flutter but resulted in Atrial Fibrillation. In the past three months this has suddenly got worse; episodes have gone from around once a month to one every two days. There is no obvious explanation for this – the usual suspects – alcohol, caffeine and heavy spicy meals have be eliminated from my diet. And still they come. I am now waiting for a Coronary CT scan to see what, if anything, is going on inside my heart.

Although the disease now appears to have gone, the consequences haven’t. I’m stuck with them. Of course I am not alone in this; I cannot imagine any member of the Cancer family getting off Scot-free. Cancer might go, but it always leave something behind – a reminder of its visit.

Despite this, I am looking forward to 2016. I have plans. I hope you do too. Good luck.

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December 16th 2014. Cake day No 9

It will not have escaped the notice of regular readers that the urge to write is diminishing. Well, not so much the urge as the need or even ability. Looking back over the past nine years I can see that I tend to write when things are bad. Writing is therapeutic and I’ve been very fortunate to share my therapy sessions with others, be they regulars or passers by.

So the lack of posts is an indication that things are not bad. Or not as bad as they once were. And that would be a fair summary.

Today, though, is a day of celebration, more important than a birthday. Each December 16th, I mark the anniversary of my first cancer diagnosis in the belief that we are survivors from the moment we are diagnosed, rather than when we get the ‘all clear’. Because some people never get that signal. Yet we are still here.

Nine years ago, on December 16th 2005, I was dragged kicking and screaming into Cancerworld. At that time the 5 year survival rate for advanced bowel cancer was 5%. I have no idea what it is these days – and I have no wish to know – but things have clearly improved.

After the initial fuss of surgery, chemotherapy and yet more surgery, we lived in hope and a blind faith in the future until April 2010, when the cancer returned. We spent four years and four months in ignorance of the cleverness and deviousness of cancer cells. Sometimes they hide or play dead when the scanner is switched on and then sneak back when the operator’s not looking. So when the oncologist says; “there’s no sign of disease” what he really means is that – by his own admission – there is no sign on the day they did the scan.

It’s now four years and eight months since the last sighting of cancer cells; a combination of surgery, radiotherapy, luck and shear bloody-mindedness means we have now travelled further along the survival path than we did last time. Have they really gone this time? We can but hope.

“We won’t get fooled again.” The Who

I say ‘we’ deliberately. Annie shares this journey with me. She has never wavered in her love and support and nagging encouragement not to give in.

In the early days I celebrated this special day in the traditional manner, with a glass or two of fizz. Since the lung re-section and the consequent heart arrhythmia, I have substituted cake for alcohol. Chocolate cake; with layers of gooey chocolate filling. Probably as bad for the heart as fizz, but ….


We’re looking forward to 2015 and the prospect of a cake day No 10. It’s going to be a busy year; we have plans. Lots and lots of plans; music, photography and travel.

Like many people, I am living with the consequences of cancer, rather than dying from it. And it’s not just me or the other inhabitants of Cancerworld; Society at large has to deal with the consequences of survival. We need drugs, we need scans and other resources and perhaps most of all, we need reassurance. And cake……

So cheers – and best wishes to all the other inhabitants of Cancerworld – be they family, friends, supporters, survivors or the poor sod who has this disease.

And today is a timely reminder that you can photograph your cake and eat it.

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It’s that time of year again. We’re back at the Oxford Cancer Centre.

We have a love/hate relationship with the place – we hate coming here and love leaving (usually). The tension and anxiety gradually build in the days and weeks beforehand – only to dissipate in minutes if the news is good. Or – at the very least – not bad. Anyone who is a member of the Cancer Family will understand this. The need to come here dictates our social calendar. So many things are put on hold until this day is over.

The building is quite attractive – even though there are rooms full of death-ray machines that zap and burn and other rooms where they drip-feed poison into veins – the decor is rather tasteful. A lot of pastels and a lot of artwork. They’ve spent money on the place.

Oxford Cancer Centre

Oxford Cancer Centre (foyer)

There’s a glass water-fall in the foyer.  Even in a place like this there is room for beauty – they try to repair the soul as well as the body. A grand piano stands in the foyer for the use of patients and staff. You can just sit there and tinkle the ivories if you feel so moved.

No scan this time, just a blood test. Annie in particular, is anxious about this. But the oncologist reassures her that I’ll have another scan in 6 months time. We’re moving from two scans a year to one. Which is good. In a way. The anxiety arises because that’s precisely what happened last time. Four clear years then – bang. Back it comes. So, next October will be the real test. If I get past that perhaps I can relax a bit. The oncologist mentions that, as my cancer returned, they reset the clock and monitoring will be extended to 7 years instead of the more usual 5 years. So – another 3 years of visits to this place.

A lot’s happened in the past couple of months. The Singing for Breathing¹ pilot scheme that I’ve been involved with has been running for 6 weeks now. A couple more weeks and then we’ll evaluate it and decide if it’s working or not; if things look good, we’ll run it as a permanent part of the rehabilitation therapy at the exercise group I belong to.

It’s a bit too early to tell how effective it’s going to be. People seem to enjoy the singing part; the exercise part is hard though – it’s tougher than a workout at the gym. But I’m hopeful it will make a difference to me. The singing teacher – an ex-opera singer and yoga instructor – is teaching us to breathe through each lung separately. This is a challenge for me, given the state of my lungs. I must admit to being a bit sceptical – and I only have to see the look on people’s faces when I tell them about it to realise that I’m not the only one. But having said that – I’m gradually beginning to get the knack of doing this.

The singing part is harder for me. I no longer have the range and my breath control is rubbish. I’m beginning to accept that this part of my life has changed; perhaps forever. I have another appointment at the ENT clinic in Birmingham, where we’ll decide whether to have one last try at improving my voice.

A recent news item confirmed for me that the Gods of Arrhythmia really do not like music. UB40 were playing at the Corn Exchange in Cambridge a couple of weeks ago and the music was so loud it was “altering heart rhythms”². Although I’m sorry for those affected, I am relieved by this news – I’ve experienced arrhythmias on a number of occasions when attending gigs. So – it was not my imagination after all.

We leave Oxford with a hop and a skip; another 6 months before we need to think about it again. And perhaps we won’t have to after that.

¹ See Singing for Breathing, January 26th 2014
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cancer envy

I can see what they’re trying to do.  I can even see why they’re trying to do it.  But the ‘how’ just leaves me speechless.  Well no – that’s not quite true.  I’m bending Annie’s ear… “and another thing…” 

The cause of my disquiet is an advertising campaign by Pancreatic Cancer Action¹.  One image shows a young woman with pancreatic cancer and a caption ‘I wish I had breast cancer’.  Another shows a man wishing he had testicular cancer.

I don’t know why I feel quite so worked up about this.

The point this campaign is trying to make is that pancreatic cancer has the lowest survival rate of the majority of the cancers we usually come across.  It also attracts less funding.

Perhaps my anger stems from guilt.  Survivor guilt.  I have the ‘right’ sort of cancer.   But how can any cancer be the right sort?

I write to Pancreatic Cancer Action to explain that this campaign is making me feel uneasy.  They reply that that’s the point – they want people to feel uneasy.  But what about people with other forms of cancer?  How are they meant to feel?  Am I meant to think myself lucky that I only had bowel cancer?  I can understand why someone with pancreatic cancer might say ‘yes’.  But don’t expect me to be happy about it.

PCA explains that they don’t actually wish they had cancer – they simply meant they wish they had one with a better survival rate.  That’s fine.  But if you have to explain your message – does that not mean, as a communiqué, it has failed?  And if what you say is not actually what you mean, then isn’t that a bit …disingenuous?

They apologise for any distress they’ve caused other cancer patients; that was not their intention.  Unfortunately it’s too late for that.  The internet is awash with claims and counter claims.  The anger is palpable;  ‘Many are saying the campaign is “insensitive”. I will tell you what is insensitive, it’s all those people running around waving pink in your face ….’.. (For those who might be unaware, the colour pink is associated with Breast Cancer).  The media² have been quick to dub this the ‘cancer envy’ campaign.

It’s like a couple of schoolboys circling each other for a fight they don’t really want, shouting, “my dad’s bigger than your dad…”

‘I wish I had’ is a negative campaign, relying on shock tactics to get its message across.  Like all such strategies there are unintended consequences, which distract from the original message.  There is a danger that, rather than educate, the campaign may perpetuate ignorance – especially if we start rating cancers as if they were contestants in a game show, like … oh … for arguments sake … snog, marry, avoid.  (Not that I ever watch it.  Or have even heard of it.)

I can see someone saying “there’s no point in me giving up smoking because lung cancer’s not as bad a pancreatic cancer”.  Extreme?  Perhaps.  Unlikely?  Perhaps not.  Perfectly rational people will go to extraordinary lengths to justify a habit or lifestyle they know might well kill them.  Or rather – kill others.  Not them personally you understand.

Shock advertising has been around a long time.  While we tend to remember the image, we often become desensitized to the message.  We’ve seen it all before.  Although I admit, not cancer envy.  That’s a new one on me.

There is another campaign around at the moment that’s based on a comparison with breast cancer.  Men United sets out to do for prostate cancer ‘what women did for breast cancer’.  It’s a ‘come on lads, we can do this’ approach.  Everything it says is positive.  There is no envy at the increase in detection and survival rates for breast cancer – rather, it is seen as an achievement, something to aspire to.

The Pancreatic Cancer Action ‘I wish I had’ campaign is by its very nature divisive, dragging in its wake, albeit unintentionally, blame and envy.   Surely if anyone could express a wish about cancer it would be that they didn’t have it at all?  Not a longing to swap it for another.

As I said at the beginning, I can see what PCA are trying to do.  And their apologies to those they’ve upset are genuine.  But they are unrepentant; their message, they believe is just too important.  It’s a high-risk strategy.

This is of course just my own view and you may well disagree.  But I hope you will agree that it’s a sad day when people who already have enough to cope with because of this poxy disease, end up fighting each other about who’s got the worst deal.

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singing for breathing

Back in November the cardiology/respiratory exercise class¹ that I belong to asked if I would be willing to attend a workshop on Singing for Breathing at the Royal Brompton Hospital sometime in January.  The aim is to help people with long-term respiratory conditions using breathing techniques commonly found in choirs and other singing groups; feedback from various initiatives around the country is encouraging.  Singing for Breathing is a hot topic right now.

It works like this; in order to sing you need to breathe.  In order to sing well you need to breathe properly.  You need to pay attention to your posture.  You need to exercise the muscles that enable singing to happen – from the vocal cords, down through the chest to the diaphragm.  Most singers, from soloists to choirs, from the highbrow to the lowbrow, will go through a series of warm-up exercises (posture, physical stretching, breathing exercises and vocal exercises) before they get on to the actual business of making music.  Someone somewhere had the bright idea of using these warm-up exercises to help people with long-term respiratory conditions, in an attempt to improve their quality of life, both in terms of their physical and their mental well-being.  It was only a matter of time before a group of people with COPD, led through their vocal exercises by a singing teacher, would take the next step and actually sing a song.

The workshop is aimed at people working in different areas of community health who are planning to set up their own singing for breathing sessions; from NHS managers to independent/freelance singing teachers.  My role, if I agree to go, would be to get a patient’s eye view, on the basis that I’m an ‘expert patient’.  At first I think they’re laying on the flattery with a trowel – expert patient?  (Blush) Surely not.  You’re too kind.

It turns out that the phrase ‘expert patient’ is commonly used in healthcare and simply means ‘the patient probably knows more about what’s happening to their body and how they feel than we do, so we’ll let them decide what they can or cannot do.’   Ah.  So, nothing to do with being a medical/musical genius then.

I came across an item about Singing for Breathing on a BBC News website² a few weeks ago;  “When you’ve got COPD, breathing is on your mind all the time. But strangely I don’t notice it when I’m singing. I can hold a note for ages.”

This is someone who struggles to climb the stairs in her home.  She cannot walk more than 15 paces without pausing for breath.   I can fly up the stairs with no problem – but I can’t hold a note.  A few weeks ago my friend Neil (Fat Freddy’s Cat) asked me to sing harmony on a song he’d recorded; ‘will you still love me tomorrow’.  I had to record the last word ‘tomorrow’ as three separate syllables and edit them together – I simply could not sing that word in one go.  So something amazing must be going on here – how can someone I could easily beat in a race (over 15 paces), hold a note much longer than me?

The more I delve into this the more amazing it gets.  I come across Singing for the Brain – where singing is used as therapy for people with Alzheimer’s³ and Dementia.  There is also singing therapy for stroke patients; they can’t speak but they can sing.

I see Singing for Breathing as a means of helping me get my singing voice back.  Or at least some of it.  Possibly.  Would I be willing to go? – You just try and stop me.

Which is exactly what happens; something tries to stop me.

A week before the workshop I fall down stairs.  I land on my right shoulder and there’s a milli-second pause before I slide across the floor and slam into the wall opposite.  This pause stands out in my mind because I do not recall anything about the fall.  I’m halfway down the stairs, and then I’m on the floor.  But the slide across the floor, I do remember.  When I come to my senses I notice an excruciating pain in my right ankle.  I can wriggle my toes so assume nothing’s broken.  Annie’s out having fun, but I remember an acronym that she instilled in me for situations such as this – RICE:  Rest, Ice, Compression, Elevate.  So I hobble to the medicine cabinet and retrieve an old ankle support and thence to the freezer for a packet of frozen peas.  (How many people have an old ankle support in their medicine cabinet?) By the time she gets home I’m lying on the sofa with the bag of peas wrapped tightly round my foot.

I’m extremely lucky, it could have been a lot worse.  I manage with crutches for a few days and by the time the workshop comes round I’ve progressed to a walking stick.

The workshop is a revelation.  We’re treated to a demonstration by one of the Singing for Breathing groups at the hospital.  Led by their charismatic singing teacher, they run through their exercise routine before singing a few songs for us.  Songs are carefully chosen – relatively narrow ranges to suit the capabilities of the group – from a Ghanaian lullaby to What a wonderful world this would be (Sam Cooke version, complete with doo-wops).  The sound they make is beautiful – surely these people cannot have serious long-term respiratory problem?

In the question and answer session that follows, patients talk about the difference singing has made to their lives; “It’s given me confidence”;  “Breathing is so much easier”.  They all like the idea of performing – i.e., singing to others outside of the group.  One patient though, does not take part in the actual singing.  She explains that she doesn’t actually like music and would not listen to it out of choice.  She attends the sessions because she feels the warm-up exercises have a beneficial effect on her breathing.

It’s all very inspiring and I’m left with a warm glow and a sense of hope as I make my way home on the train.  Now I have to write a report for the exercise class and see if we can set up a Singing for Breathing group in MK.  And I have a New Year’s resolution; to hold a note for ages.’   Will you still love tomorrow will do for starters.  Watch this space.


 ¹See Road to Nowhere October 10th 2013
²Belting out a tune ‘helps those struggling to breathe’
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cake day number 8

RIP Edna Kabappel


Edna Kabappel, Bart Simpson’s teacher at Springfield Elementary School, was a great comic invention.  She had many catchphrases – one of my favourites being, “Don’t do as I say, do as I mean”.   I find myself using this a lot these days.

Marcia Wallace¹ – the actress who gave life to Edna – recalled her own dealings with cancer in her autobiography Don’t look back, we’re not going that way!  While I would dearly love to add this phrase to my repertoire of handy mantras for difficult situations, I can’t.  Not just yet.

I’m still stuck with images in my head from those scary days around that first diagnosis.  The day, or rather, evening after I get the news, I’m standing in a friend’s kitchen.  There’s a party going on – but I’m lost in that in-between world; in between hope and despair.  On Christmas Day, I’m sitting on the bed reading Alan Bennet’s account of his own bowel cancer, while the sounds of Christmas – turkey sandwiches, games and The Great Escape seep under the bedroom door.  And so on.

These images float in and out of my mind, coming and going like a slide show dissolving quickly from one snapshot to another, with no time to take in the detail.  Although I remember some scenes quite vividly, others are vague, out of focus memories.  It was 8 years ago.  It seems longer, a lifetime ago – and I guess it was – in another life.

I stick a tentative toe in the brave new world of ‘don’t look back’. I try saying There’s no cancer in my body.  It sounds good.  And vaguely familiar.  A riff comes comes into my head; there’s no cancer in my body/ no cancer in my body….. (repeat).   Think early 1990s club anthem.  (Not that I know anything about that sort of thing).

Being moderately cautious and occasionally pedantic by nature, I try again; there is no sign of cancer in my body.  Can’t argue with that.

I can actually.

Sometimes I can be extremely cautious and (to my dearly beloved) frustratingly pedantic: On the day I had my scan there were no detectable signs of cancer in my body.  Medically accurate but hardly catchy; try singing it to I’m too sexy for my shirt/ too sexy for my shirt by Right Said Fred.

I ask Annie.  “Don’t say it yet.”   Her caution is based on our shared history and not because she might be a closet fan of Fred.  Or Marcia Wallace.

We’ve heard back from Oxford.  The oncologist is not ready to wave me off yet, so we’ll see him again next April.  Annie is not quite ready to think I might be free of the disease.  She still prefers to think about life in 6-month chunks.

This is the thing; we share this disease.  We both have it; joint custody of a delinquent set of unloved, unwanted and uncontrollable cells, which manifest themselves in the body as cancer.  As I say to anyone who’ll listen, I have the symptoms – Annie has the consequences.  And the consequences of cancer last much longer than the symptoms.  So, until we can both agree on a suitable form of words, the ringing of bells and the shouting of huzzahs will remain a work in progress.  It can keep for now.

If you’ve followed this blog for more than 12 months you’ll know that I have got into the habit of celebrating, or at least marking the passage of, each anniversary of my first diagnosis as a ‘special day’ – renamed last year as ‘cake day’.  Diagnosis is the moment we become survivors, so what better way of saying “up yours cancer” than a nice slice of cake.  But even though I will indeed partake of celebratory foodstuff – carrot cake is my current fancy, although a currant fancy also hits the spot – I cannot help but adopt a more cautious tone this year.

Last year’s entry for this day was full of optimism and thanks – recognition of the progress made in the previous 12 months and hopes and plans for the 12 months to follow.  Yet just a few days later, Annie’s brother Rob died as his cancer quickly and unexpectedly finished the job it had started some 5 years earlier.  She was there in his last hours, trying to take his pain away and make it better, as she had wanted to do for me on so many occasions.  I don’t really know what it’s like to watch a loved one suffer.  I imagine helplessness and blame and guilt.  If only I’d done more.  I could have done more.  I should have done more.   But it doesn’t quite work like that.

I have a friend in Cancerworld called Barbara.  She reminded me, not so long ago, of something I wrote back in 2006² _ when I was having a bad time with Chemo.  Some days I would be on the floor, unable to face another session.  I would often shut Annie out, not wanting her to see me at my lowest.  This was, I guess, a mix of pride and foolishness on my part; a futile attempt to protect her feelings.

I realised that there are some things I just had to do for myself, things that no one else could do for me.  Like getting up off the floor and going to Chemo.  Barbara describes this as “being on a wobbly rope bridge, high above the jungle, that you have to cross on your own even though there are loved ones at either end for support.”  I love this analogy; it sums up the situation perfectly.  Knowing my own personal demons as I do, I cannot imagine anything much worst than a fragile rope bridge, high above a jungle; a fear of heights and creepy crawlies that want to eat me.  And yet …. no one else can get me across.  I have to do it myself.  That’s the thing about cancer – so often it’s just me, me, me.  Selfish – but that’s what being a survivor means.

I could see that this made it doubly worse for Annie; she was hurting for me and hurting for herself.  I put my thoughts down in writing, as a way of explaining what I was struggling to say out loud.  In so doing, it made me think about other people in her position.  So I wrote an open letter to all those who care for someone with cancer:

Dear Loved Ones

We know it’s hard for you when you see us in pain and discomfort.  You say “I wish I could make it go away” or “I wish I could make it better”.  What you mean is – you wish you could make the cause disappear – but you can’t.  In that respect you’re just like us – helpless.  The best you can hope for is to ease the symptoms. 

You cannot know what this is like – and for that we are grateful.  There are some things we cannot, dare not, share. 

Don’t be hard on yourselves; if you do, we end up feeling guilty and you feel worse.  The hardest lesson for you is to know when you can help and when you can’t.

Don’t forget your own needs.  You are going through this as well – you need help and support.  We get all the attention and it’s easy for you to get left out.  You may not have the disease, but you too feel pain and discomfort.  So don’t feel guilty about addressing your own needs.  Have fun.  We would in your place.

You already have an important role in our lives – you may be our partner, our parent, our sibling, our offspring, our best friend.  Just carry on being that person – we won’t ask anymore of you.

Know that we could not do this without you.  You stand on the touchline in all weathers as we play to win.  You fetch our pills, you wipe our brows, you hug us when we need your warmth.  You are as important to our survival as all the drugs and scans and surgery. We do know what you do for us and we love you for it.  So thank you.

A Cancer Survivor

If there is one BIG lesson that Annie and I take from what we’ve been through these past 8 years it’s that it would not work if, god forbid, our situation were to be reversed.  The one time she has been unwell enough to justify staying in bed was a disaster; my nursing skills are rubbish.  I’m just not as good at it as she is.

Comfort food is important at times like these.  It should have a mix of carbohydrates and protein and be easily digestible.  Macaroni cheese is a good old hospital standby and so I attempted to nourish her with the same dish.  Maccy cheese is something that really polarises our thinking, as I eventually discover.  I like it with a light, generous sauce – she likes it thick and stodgy.  If you were undertaking some repairs to a plaster wall, Annie’s maccy cheese would provide a firm basis, albeit with a bit of light sanding, for a coat or two of emulsion paint or wallpaper.  You can leave out the sanding stage if you’re trying to repair Artex or wood chip.

She put on a brave face when I took her supper up to the bedroom.  At first I thought she was overcome with emotion, rejoicing in my new role as her carer.  But no. “This is the sloppiest maccy cheese in the world” she sobbed; “it’s just macaroni floating in yellow water”.  She threw back the covers, rose from the bed and went down to the kitchen.  Now I call that a miracle.

She read through this just before I posted it and although it’s been a few years since the event described, the memory is still clearly raw.  She’s hardly ever ill now.  In our house at least, maccy cheese has become a byword for preventative medicine.

As I celebrate my eighth year as a cancer survivor, I tip my hat to all you carers, supporters, lovers of those with cancer.  You have the toughest of jobs, so hang in there.  Better still, sit down and put your feet up.  And don’t forget the cake.

¹  Marcia Wallace, AKA Edna Krabappel, actress and author, died 25th October 2013.
² My first blog which turned into ‘it’s not over till the Bag Lady rings’, Spring Hill, Oxford, 2007
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tooth story 2

Back in the 1970s I lived next door to a couple who had a son around my age – mid-20s.  One day he went to the dentist to have a tooth removed (tooth ache perhaps – I don’t remember the exact reason).  He came back toothless.  Not a single one left.  I was speechless.  So was he for a while.  

Was this perhaps a tooth fairy scam on a massive scale?  Were his teeth so bad that they all had to come out?  The answer turned out to be much more shocking and mundane than I had imagined.  He had looked at his parents and decided that false teeth were inevitable – a consequence of age, from which there was no escape.  He simply couldn’t be bothered to wait.  He just shrugged his shoulders as if to say ‘may as well get it over with now’.

I don’t know what shocked me more – that a young man with a perfectly healthy set of teeth (bar 1) should elect to have them all removed – or the fact that a dentist would actually agree to do it.

I consider mentioning this to my dentist; I decide not in the end, just in case he gets the wrong idea.

My wait for treatment is finally over.  It’s been 6 weeks, which is a long time to have toothache/abscess.  I’m a little nervous – not so much the actual extraction as the consequences.  I stopped taking warfarin 5 days ago and had a blood test on my way to the dentist.  The wound needs to heal quickly so I can resume the medication.

“Are you off the warfarin?”  I nod; “my INR is 1.1”  He’s relieved.  The injection takes about 10 minutes to kick in and then it’s all systems go; “you’ll just feel a bit of pressure and some funny noises – don’t worry about them.”   I close my eyes and wait.  In my head I see cartoon tooth-extraction from the comics of my childhood – string tied to a doorknob or an enormous pair of pliers.

I hear a bit of creaking and then suddenly it’s all over.  No mess, no spitting blood.  “Your INR seems to have done the trick.  I don’t like doing this when people are on warfarin”.   He advises me to wait another 2 days before starting again.

Over the next few hours the anaesthetic wears off and I begin to feel the effects of the treatment.  But it’s nothing a few paracetomol can’t sort out.  Annie prepares some soup and offers to get me a straw.  But I manage with a spoon, although not all the soup makes the journey safely from bowl to inside of mouth.

And that’s it, job done.  And I can confirm there is no tooth fairy.

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it’s the tooth, the whole tooth and nothing but the tooth.

It starts back in September just days before we go on holiday.  I crack a filling.  My dentist is on holiday, so the choice is wait a few weeks or see the locum.  I choose the latter.  It’s like a scene with the mad dentist from Little Shop of Horrors.  He’s almost most standing in the chair as he drills out the old filling.  It takes a week or so for the ache in my right jaw to go.

And now it’s back.  From my ear to my chin.  Codeine does nothing to alleviate the pain and I manage to get an emergency appointment with my own dentist, who’s now looking tanned and relaxed.  It turns out to be an abscess.  There’s a dead tooth sitting above it.  The very one I had filled.  It’ll have to come out, but not yet.

The warfarin is the problem.  He wants to wait 4-5 weeks so that I can see my GP and sort out a plan for coming off the warfarin while he pulls the tooth.  I’ve never had a tooth abscess before – my sympathies to all those who have – but I have dealt with pain and discomfort before.  A dental abscess would certainly make it into my top 10 list of things to make my eyes water.  He prescribes a course of antibiotics; “once they kick in you should feel more comfortable”. 

I don’t think I’ve had a tooth out since school days – laughing gas, a nice sleep and a bloody hanky.  Now it’s local anaesthetic.  So I’ll be awake.  When I get home I google tooth extraction and immediately wish I hadn’t.  The web is full of gruesome images of bleeding gums.  So don’t search for that particular topic if you’re in anyway squeamish.

It gets worse under the heading ‘things that can go wrong’.  It can take 8 hours for the mouth to stop bleeding.  I could swallow the tooth if the dentist is clumsy and drops it.  I didn’t check if my dentist is prone to dropping things.  I give up at this stage; I just don’t want to know any more.

Next day at the gym I’m just settling down to a session on the exercise bike when one of the nurses asks how I am.  I mention the toothache.  She looks at me as if I’ve done something very rude in a place where you shouldn’t do rude things.  Before I know it, I’m off the bike and sitting on a chair in the middle of the room.  People are watching.  I think she’s going to give me a detention, but she gives me a cup of tea instead.  It turns out that exercise and dental abscesses do not mix (especially while on antibiotics).  Exercise increases pressure on the abscess (through various nerve pathways running up from the abdomen) and there’s a risk that the abscess will spread from the jawbone to other part of the skull and ultimately, the brain.

Assuming the antibiotics kill off the infection I can come back next week.  Oh no I can’t.  I’m having a flu jab a few hours before the next gym class.  Flu jab and exercise is also a no-no.  The needle can damage the tendons in the upper arm so they need to heal for 24 hours before being put under any pressure.  It’s frustrating but it is also reassuring.  These people have my interests at heart.

I visit my GP for a plan of action; he looks up from his computer screen when I enter the consulting room.  “I haven’t seen you since you went to Australia.  How are you?”  I can’t imagine many GPs remembering that one of their patients went on holiday 6 months ago.  I explain about the abscess.  There’s a sucking of teeth and a hint of a frown;  “It’s very difficult to stop bleeding from the mouth.”  My INR is currently 3.1; “It needs to be 1”.  INR gives a measure of how quickly or slowly blood clots.  A normal person (i.e. someone not taking warfarin, or any other anti-coagulants) will have an INR of 1.  My current reading suggests my blood will take 3.1 times longer to clot than the norm, which is not ideal when having a tooth out.

Tooth day is eventually scheduled for 4th December.  I can stop taking warfarin 5 days before that.  My GP suggests a blood test on the morning of the appointment, before I see the dentist, just to make sure that my INR has indeed dropped enough to make the tooth removal safe.  He also prescribes another course of antibiotics;  “you’ve got a long wait.  We don’t want it tuning nasty.”  No – we don’t.  I just want the tooth out and whatever it is they do to abscesses, done.  I do not want it going walkabout.  A visit from the tooth fairy would be in order though.  I don’t know what the going rate for tooth fairy visits is these days, but I’m sure someone will enlighten me.

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if the nurse comes in …. part 4. this time she does!

But not straight away.

(If you don’t know what I’m on about you might like to read if the nurse comes in we’re doomed, July 7th 2012)

We see the Professor of Clinical Oncology.  He’s our favourite.  Compassionate, a good listener, a patient explainer of all things medical.  And to the point, no messing about; “your scan is clear”.  With those four words the stress of the past week just rolls away.  We’ve been through this so many times now – it never gets any easier.  In the time between having a scan and getting the results we go into some sort of emotional meltdown.  Annie still finds it possible to speak and be civil, but I’m withdrawn and brittle.  As if I’ll break at the slightest thing.

It looks as if the sums are now on my side.  But sums have a nasty habit of making 2+2=5.  The prof has explained this all before but it’s worth another listen; “in the case of bowel cancer, if it is going to return, it will do so – for around 90% of patients – in the first 2 years.  After that, the likelihood of a recurrence is very much reduced.”  So – get past 2 years and you’ve a good chance of surviving the disease.

“But”, cautions the prof “you’re a reminder that this doesn’t always quite work out.”   My cancer returned 4 years and 3 months after first diagnosis.  Which is unusual.  And it’s this that makes these appointments so difficult for Annie and me.  It’s now 3 years and 7 months since the cancer returned.  So while most people this far down the line might be starting to think they’re out of the woods and can treat scans as routine, we treat them with more respect – we know that it can still come back, even this late in the day. But the prof is relaxed about my progress; “I’m very pleased about where you are as far as cancer’s concerned”.  And if he’s pleased then we should be too.

He asks about my general health; I tell him about my aches and pains – particularly around my stomach.  I say ‘stomach’ – sometimes it’s the entire internal plumbing system.  I also point out that I’m aware it may be stress and all in my mind or a reaction to the various heart pills I have to take.  He listens patiently, then gives me a thorough physical examination.

He puts it all down to the after-effects of surgery; “you’ve had a lot of work done down there and, frankly, your bowel is never going to work as well as it did before.  It will cause you aches and pains from time to time”.  This is my version of what he said – he didn’t put it quite like this.  His explanation was far more graphic and used language that might cause those of a nervous disposition to faint.

So where to next?  He’s not sure.  Rather than see an oncologist in 6 months time, “it might be time to hand you over to the Nurses’ Continuity Group”.  He leaves the room for a moment and comes back with a nurse.  Annie and I exchange a glance (ha .. so a nurse did come in after all).  It seems someone making my sort of progress would, in future, be seen by a specialist cancer nurse; but given my history they may need to defer this for another 6 months.  They’ll have a think about it and let me know.  The prof makes his exit and leaves us to get to know the nurse.

I tell her that I’m glad she didn’t come in at the beginning; she asks why.  I explain about the ‘angel of death’ – a game we play to ease the tension while we wait.  If the oncologist comes into the room on his own, then it’s probably going to be OK.  But if a nurse comes in as well, then it means bad news.  “You’re the 3rd person that’s said this in the past couple of weeks.  We’re going to have to think about how we do this”.

We have a general chat, exchange contact details and then head home.  And that’s it over and done with.  Six months of uncertainty and a week of high tension, distilled in a half hour consultation.

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road to nowhere – take 2

My experiment is in danger of failing.  About 10 minutes from the gym I’m considering turning back.  I feel unwell – stomach pains and light-headedness.  Something is not right.  If I miss the session, I won’t know if exercise affects my arrhythmia.  It also strikes me that if I do go to the gym and have another arrhythmia I still won’t know if it’s down to exercise – it could be something to do with whatever’s making me feel unwell (or a combination of that and the exercise).  Designing an experiment is hard work; no wonder it took so long to find the Higgs-Boson particle.  I ponder on this for a while.  In the end I decide to carry on – if I’m going to be unwell while exercising, this gym is a good place to be.

We gather in the foyer while exercise instructions, clipboards and pens are handed out and oxygen stats are taken.  My heart rate is 71bpm but my O2 is 88%.  This is not good – it should be at least 95%.  What on earth is causing this?  I know I’m feeling anxious; I have stomach pains and I have my scan tomorrow.  The previously discovered abdominal hotspot is weighing heavily on my mind.  I just hope it’s not weighing heavily in my stomach.

I’m losing all sense of proportion.  Well – to a degree.  Life is short, life is precious, don’t waste it.  I get that.  When I’m at the hospital surrounded by sick people, that message is writ large in the front of my brain in capital letters – my very own personal heads-up display.  (This message will also be powerfully reinforced in the gym foyer in a few moments time).  But the longer I survive cancer, the easier it becomes to lose sight of the big picture and so get stuck in the trivial.  It probably is just stomach-ache.

There should be three staff on duty but two are missing.  An announcement – the class will finish early today because of a shortage of staff.  One is at a funeral for someone from the Wednesday morning class.  The other is at a funeral for someone from the Thursday morning class.  This news is greeted with silent acceptance; I’m shocked – and then wonder if someone’s going to make a joke about Friday’s class.  But no one does.

I choose the exercise bike to start with.  The cardio-nurse is on duty and stops by my machine to ask how I am.  I explain about the stomach, the light-headedness, the O2 stats.  “Did you eat enough before you came?”  Yes, I think so.  She’s puzzled and tells me to take it easy.  They’ll check my stats at the end of the session.

I ask her about the arrhythmia and explain about last week.  “Whenever someone tells me about arrhythmia I always ask what they were doing in the 24 to 48 hours before”.  Hmm, interesting.  I was gardening the day before.  “Doing what?”  Moving some pots around.  “Heavy pots?”  One was very heavy.  “The exercise might have put the lid on the tin, but I’ll bet it was the lifting the day before that was the trigger.”

She explains it all in terms of speed limiters; “you know – on lorries.”  The bisoprolol sets a steady heart rate (speed limit), which can be over-ridden if necessary (foot down or over-exertion).  With the foot off the gas the speed/heart rate falls back down to its previous level.  So far, so good.  I tell her that this is the first time anyone’s explained the nature of beta-blockers to me in this sort of way.  I’ve heard the bio-chemical explanation before (whoosh – sound of adrenoceptor blocking agents going over my head) and I’ve heard about some of the side effects – tiredness, sleeplessness, low blood pressure…. – but no-one’s mentioned HGV engine limiting systems before.  She just shrugs; “I’ve been doing this for 25 years”.

I ask why there’s a time gap between the trigger and arrhythmia.  She puts it down to the bisoprolol.  “It’s a problems with all beta-blockers.”   The drug can cause a delay in the transmission of electrical impulses in the heart.  So the effects of over-exertion will be felt some time later.  I’m still pedalling away as we speak and getting more and more breathless – not ideal for conversing – so leave it at that.  But there are questions still to be answered.  I don’t pretend to understand all of what she says but I like where it’s going.

After the exercise bike I manage a go on the cross-trainer.  I get it right this time (rotate pedals forwards) and as I settle into it I come over all Mo Farrah-ish.  I can hear Vangelis¹ in my head – and my own personal chariot is on fire.  I could be out in the desert (on a Horse with no name) or loping through the Kenyan highlands (no suitable music comes to mind) and I realise that I really, really, like this.  I suddenly get running.  I understand human evolution; I’ve come down from the trees and I’m now chasing after food.  Or perhaps fleeing a lion.  Is it too late, at 66, to take up the marathon?   When we finish the class my O2 has risen to 95%.  So that’s a relief.

I’m tired when I get home and doss on the sofa with a cup of tea and a flapjack.  (By comparison, when I got home last week I was bouncing round the kitchen on an endorphin high).  My plans for a light supper are almost scuppered – Annie’s made one of her special (cardio-alert) apple and blackberry crumbles with a frightening amount of butter and sugar in the topping.  But it would be churlish to turn it down.

And so to the big question; what happened next?

Nothing.  Zilch.  Diddly squat.  In the context of last week, this is a ‘good thing’.   The Gods of Arrhythmia chose not to come.  Although if they read the bit about the 24-48 hour delay, they may just decide to put in an appearance tomorrow.


¹ Vangelis; composer of theme music for 1981 film, Chariots of Fire.  Also used at the 2012 Olympic Games opening ceremony.  And any footage of someone running in slow-motion.
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