“Take the risk of thinking for yourself. Much more happiness, truth, beauty and wisdom will come to you that way. I want to live my life taking the risk all the time that I don’t know enough”.
Christopher Hitchens (1949-2011)
Sometimes I’m torn; to celebrate means being thankful for love and support. It means acknowledging that it’s good to be alive – that all the minor problems, which bug our everyday lives, don’t amount to hill of beans. On the other hand, it means drawing attention to it, making a fuss, a big deal. I just want a quiet life. Normality.
December 16th 2010 was always going to be a significant date. I had it writ large in my diary: Special Day Number 5. For anyone touched by cancer, the 5th anniversary of diagnosis holds special meaning.
I was diagnosed with advanced bowel cancer (Dukes Stage D) on December 16th 2005. Like most people in this situation my first thought was “what are my chances?” I could find 1-year and 3-year survival rates, but that was about it. I phoned a UK cancer charity and asked for some numbers; “We don’t tend to publish the 5 year survival rate for advanced bowel cancer”. Why not? “Most people don’t survive that long”. After a lot of digging around on various websites I found what I was looking for; the 5-year survival rate was around 5%. We didn’t need Charles Dickens back in December 2005. We had our own Ghost of Christmas Yet to Come.
Given the return of the Prodigal Tumour in April 2010, Special Day Number 5 became even more important and we celebrated with cheers and tears and a glass or two of fizz. Now that the excitement’s died down a bit, things will be a bit more low-key this year and we’ll probably just have a nice cup of tea.
Looking back over the past 6 years I’ve come up with an organ hit parade – my very own Top of the Chops. If you’re going to have bowel cancer, this may help. Or not.
In at number three is the lung. Difficult to remove without upsetting the neighbours – the heart and vocal nerves tend to get mangled. And the pace of life slows down afterwards – get used to coming last.
At number two is the bowel itself. Easy to remove, but messy. May need alternative plumbing arrangements. These can be temporary or permanent. Plenty of people with bags under their Lycra.
At number one – the organ of choice for removal – the liver. Easy access, staples out in 10 days and then it conveniently re-grows all by itself. You’d never know, apart from the Mercedes scar. And the empty bottles of blood outside the operating theatre.
As I’m now living with the consequences of No. 3, I have (finally) started using a lung-training device (finally, because it was given to me by a colleague a year ago) in order to rehabilitate my lungs. I read something recently by a COPD nurse, which made me think; “coping with COPD … is like training for a marathon”. I need to take lung damage seriously.
The lung trainer is a T-shaped plastic device a little larger than an asthma inhaler. At one end is a mouthpiece, at the other, an adjustable valve. As I breathe in the valve acts as a resistance to my effort – exhaling releases it. I can increase the tension, thereby increasing the resistance, making it harder to inhale. This in turn strengthens the inspirator muscles, which control breathing.
If I do 30 repetitions, twice a day I’ll notice a difference ‘… in just 4 to 6 weeks’. This reminds me of those Charles Atlas adverts on the back of magazines and newspapers for a postal course of isometric exercises guaranteed to ‘stop bullies kicking sand in your face’. Well Charles Atlas – I completed your course; now send me the muscles.
The Power-Breathe has 10 increments for adjustment. The lowest resistance, which I start on, is much like holding a mirror to the mouth of a corpse. It simply detects signs of life. This does not seem right. It appears I’ve unscrewed it too far. Correctly adjusted I suck in, the valve activates and my lungs slam shut like a paper bag evacuated by someone who has successfully completed the Charles Atlas course.
I log onto the company website and discover that my particular model (the red one) is for athletes and has the highest resistance. I find the wimps model (turquoise) and take comfort from the fact that, instead of positive reviews from Iron Men/Women and Marathon runners, there are positive reviews from COPD patients, AF suffers and people who are just getting a bit past it. Scrolling down the list of happy puffers throws up more hallelujahs than a revivalist’s meeting. One COPD patient even throws away his portable O² cylinder.
Even with the correct model, getting into a training regime is not easy. I am just not a gym person. Annie, in a previous life, was an aerobics instructor. Give her some leg warmers, a room with a big mirror and an iPod and she’s in her element.
We’ve turned our spare room into a home gym. This was done originally to help me recover from bowel surgery. It has a big mirror and a set of iPod speakers (I draw the line at leg warmers). So it should be easy. It’s certainly convenient.
Annie sets herself targets. She will often do a session in the gym after a 10-mile bike ride. She strives for continuous improvement – all with a smile on her face. She really loves it. I, on the other hand do not. My ‘target’ is to use it more than once a year. I think it goes back to school days and PE. I hated PE – running around in a vest and shorts being shouted at by an ex-Army sadist left deep scars. I cannot bear to look at a vest even today.
The one thing I could always do was ride a bike. So in preparation for lung surgery it was no hardship to go out and do 20 miles before breakfast. Besides the fun, I felt a connection with my childhood heroes. My friends wanted to by Billy Wright (captain of Wolverhampton Wanders and England, married to a Beverly Sister, thus starting the trend of Sports/Showbiz marriages.) I wanted to be Jacques Anquetil (5 times winner of the Tour de France). His approach to training -“pheasant, champagne and a good woman” – was lost on me as a schoolboy, but he looked a bit like James Dean on a bike and therefore, cool. Before we really knew what the word meant.
Now things have changed; what was once no hardship and fun is completely the opposite. Annie has to drag me – nag me – to get out on the bike. Even Lycra has lost its appeal. I do it solely to keep the pnuemonitis at bay. I cycle to work whenever I can. Going is easy – even in bad weather. Coming home is hard though; uphill and against prevailing winds. I guess there is progress of sorts; it doesn’t seem to get any easier and the effort always hurts but my recovery time has shortened. Like the man says; pain is temporary; quitting is forever (Lance Armstrong).
Some days though, and for reasons I cannot explain, I take a big step backwards. There is no obvious sign that something is amiss until it happens. Then my chest is in a vice and my breathing is laboured; moving – even thinking – seems to take place in slow-motion. I refer to these as my ‘bad days’. But they don’t last long. Perhaps my body just wants a day off every now and then.
I’ve opened up another front in my war on pneumonitis by having singing lessons – or rather – breathing lessons. Just half-an-hour a week, but it’s a start. I tell my teacher that I’m not expecting miracles. “It’s good that you’re realistic”. We start with the diaphragm. “In and drop – out and squeeze”. I immediately get this wrong; ‘in and out – drop and squeeze’. I should be pushing my diaphragm down each time I inhale. What this means in practice is that my stomach distends to the extent that I could easily pass for someone who has spent a lifetime drinking 12 pints of Heavy each night.
Then as I exhale I bring my diaphragm in and squeeze every last drop of air through my grateful vocal cords. “Your diaphragm is your best friend”. It’s surprisingly hard work and I can see it’s going to take a while for my new best friend and me to get acquainted. I need to practice and I find the mantra in and drop – out and squeeze playing in my head as I stand in the coffee queue at work; it’s grotesque. I’m going to get arrested.
Then a song; she suggests ‘Smile (though your heart is aching…)’ – it has a fairly limited range. I should take a breath at the end of each phrase, but I’m gasping at the end of each word. My teacher makes encouraging noises; “there’s still a voice in there somewhere”. Although quite where ‘somewhere’ is, is unclear. It’s probably dark and damp, its inhabitants enjoying a quiet night in, until disturbed by the out of control vibrations of a flabby, yet plucky, vocal cord.
Back home, with the guitar, is no better. I can’t get through a Fat Freddy number yet. Except in the shower. Which doesn’t really do a lot for cedar and mahogany. I’ll give it a few months (the lessons, that is). I realise that singing is a metaphor for life and I’m just not ready to give up on it yet.
Three of us from Fat Freddy’s Cat recently got together to hold a wake for our one-time accordion player, Steve Hollier. The date was chosen to coincide with a celebration of his life being held in his most recent home, Azerbaijan. We play some songs and, by the miracle of modern technology, we’re seen and heard by his wife Sandra and his friends in Baku. The connection lasts long enough to share a few memories.
At the very same time as we’re saying goodbye to an old friend, Annie’s son and daughter-in-law are getting to know their godson at his christening. It’s tempting to imbue this coincidence with cosmic significance, but we manage to avoid singing the Circle of Life in the car on the way home. We do mention it though. Quite a lot.
This notion of ‘life as a series of circles’ allows a shameless segue into another topic. My 28-day heart arrhythmia was due on 11th December. Note the paste tense. It’s late. I get to midnight on the 11th. Annie’s still awake; “you’ve made it”. Now what? I don’t sleep well, tossing and turning, trying to find a position where I won’t feel a pulse. They’re everywhere. I swear before I had lung surgery that my heart did not beat at all.
I have an appointment with the cardiologist at MK in a couple of weeks. Do I show him my graph, with its 5 evenly-spaced points? And what of the 6th? If it’s late, or decides not to show at all, it’s going to make my theory look pretty silly. I guess all great scientists have to grapple with this one.
No one has ever mentioned the ‘R’ word. Perhaps it’s just as well. There’s a lot of confusion out there. Someone said to me the other day; “one more year and I’m in remission”. I nodded encouragingly, not wanting to rain on his parade. I can be annoyingly pedantic at times; “what do you mean by …? (insert word/concept of choice). I see it a helpful rhetorical device designed to clear up any potential misunderstanding, although others may not.
Remission is not the same thing as cure. It just means that on the day that the oncologist examines a scan/blood test etc, there is no sign of the disease. It doesn’t mean it’s not there. They just can’t see it. There is a limit to the resolving power of even the most sophisticated scanning machines. I know this much from personal experience.
And why is this important? Most cancer deaths come from cancers that return – usually in a secondary or tertiary site – metastatic cancers. Having had a thoroughly good kicking in their original location, malignant cells can wander off, sulking and skulking, before getting up to mischief elsewhere in the body. At a time and place of their choosing.
When I see the oncologist, I ask him to define ‘remission’. “It’s not a word we use – although it is used for certain haematological cancers.” He confirms that today, there are no signs of cancer in my body. “You’re doing very well – although with all that you’ve been through, we can’t rule anything out.” No – I understand that. I have learned not to have unrealistic expectations.
My chest sounds fine when he listens – no crackles. Perhaps it’s the Power-breathe; I’d certainly like to think so – having been at it for 4 weeks now. He asks about aches and pains from the lung surgery; it’s been 18 months and I’m still sore under my left arm. “Unfortunately, you’re probably stuck with that”. It’s not really a big deal; I’ve got to that age where, had I not had cancer, things would have started creaking and dropping off quite naturally – the inevitable precursor to oblivion – ‘sans teeth, sans eyes, sans taste, sans everything’.
He is relaxed enough about my progress to pass on a 3 month check up and see me in 6 months; “unless you’re worried of course – you can see me any time”. No, I’m not worried; call me Joe Cool. Today the scans are clear and I’m happy with that.
There have been times during the past year when I’ve not been happy with my progress – my mind drifts back to a consultation with the cardio-thoracic surgeon some 18 months ago during which he raised concerns about surgery – specifically – its negative effect on my “quality of life”. And at times like these I wonder if I made the right decision. Perhaps I should have just taken my chances with another dose of Chemotherapy. Annie, on the other hand has no such doubts; “you probably wouldn’t even be here now”. And hands me a tea-towel. There is surely no finer example of normality than standing side-by-side at a kitchen sink.
It’s easy to forget that this year has been as trying for Annie as it has been for me. She’s also been a cancer survivor for 6 years. She’s borne it for the most part with dignity and good humour, losing her cool only when the Byzantine nature of the NHS conspires to prevent even the simplest of conversations or exchanges of information between doctors, or between doctors and patient. I cannot imagine how I would have got through this without her.
And to all of you out there on the other side of my computer screen, reading this blog – thank you. You make a difference. As for other members of the cancer family – hang in there. Acknowledge your own Special Day.
I look forward to Special Day Number 7. Perhaps a new voice. Or a year free of treatment. Better still – all my bits, present and accounted for. I’ll drink to that.