I'm a 52 year old husband and father. Another privileged white bloke, but one who realised just how blessed I am during aggressive cancer treatment in 2009 (that I later learnt nearly killed me). In June 2016 I had a second diagnosis and surgery to remove and replace part of my tongue.
We lost the whole of Tuesday. I woke on Wednesday in Marsden's ICU. Still high on whatever they had pumped into me!
No 'that's it then' with cancer!
July 19, 2016
With cancer I've learnt that you don't get a simple 'that's it then'. Actually, the more I think about it, in life very little (of real importance) is black and white!
In 2009, some months after my treatment finished I had a scan that showed me to be 'within normal limits', meaning I had no more cancerous cells in my body than a 'normal' person. I remember not feeling particularly celebratory. Because it was the result I was expecting, because any other result would have been really, really rubbish - requiring exceptional resilience. Probably in part too because there was no clarity. No one actually said 'you're done'. They can't can they - for reasons that have subsequently become clear!
I was lucky to have a friend (a doctor who sees a lot of HPV related cancers in his work) who told me that if I was his patient, he would be looking at me as someone who was 'done'. I took my lead from him and over the next few years saw myself as someone who had had cancer and benefited from the experience. That was the right way to be. Because you can't live your life thinking 'something bad might happen'. Well you can, but.......
This time one of the nurses suggested last Wednesday that we might be opening a bottle of something sparkling to celebrate the news. I remember thinking that there didn't seem to be much to celebrate. Again partly because it was the news I expected and anything else would have been rubbish. More because what I had heard did genuinely feel like quite mixed news. And this is coming from someone on a mission to be positive.
The news we received was (with apologies for the inevitable 'Chinese whispers' deviation) that there are four markers they look at in a case like mine. Two I scored well on. Both of these involved lack of spread; I think into the bloodstream and the nervous system (?) They had removed the most likely neck nodes and pathology (I always visualise people in lab coats staring through chemistry set microscopes - the sort with the picture of a bee's hind leg at 60x magnification on the box) showed nothing abnormal. So the short term, immediate news about spread was good and there's no need to reacquaint myself with those strength sapping siblings: chemo and/or radio therapy.
The two markers I scored less well on related to the make-up of the thing itself. First it was much bigger than they had prepared for. We had an MRI scan I think three weeks before the operation and I'm assuming that their size expectations were based on that. But we knew the thing was moving and mutating at pace. After all, a couple of months beforehand it had just been a small (possibly 8mm x 8mm) patch of slimy greenish white on the side of my tongue. And in the three weeks between Cyrus first seeing it and his first follow up appointment it had 'deteriorated significantly.' The second was about the edges of the tumour. They like to see a clear delineation between cancerous and normal cells. I can understand why, but mine had confused edges. I visualised ribbon development and ad hoc, opportunistic building on the green belt around London. That's clearly not a good thing and it's also why they remove a margin of healthy tissue.
Cyrus characterised the news as being '85 out of 100'. I was immediately reminded of my first boss in the law who told me that whenever asked to give a client an assessment of litigation risk he always started from 60:40. Because 60 sounds like a positive figure, but 40 is actually quite a big number that can cover all manner of unexpected occurrences. He didn't use the 21st Century word 'downside', but that's what we're talking about here. 15 isn't an insignificant downside number either. Perhaps more importantly I thought a surgeon, given the nature of their job, is surely always going to give more weight to the short term factors when coming up with a number like 85.
We also discussed the relevance of the my cancers both being HPV related. Head and neck HPV related cancers are a big new thing in men of my sort of age. I was very much part of this new wave in 2009. Now it feels like I have veteran status. Respect due?! On the one hand HPV related tumours appear to be more treatable. However, on the other, there is "no reason for me not to have more". For someone who has just lost a good chunk of tongue having found an innocuous, whitish patch on it about 10-12 weeks ago, this isn't a message that it is easy to view in a positive light. OK it may have been seven years since the last significant episode, but what's to stop another one appearing tomorrow? OK they'll now be watching me closely, but still.
I've had a few days to reflect on this now. To construct a positive lens as it were. The truth is, I don't need to. I'm sitting in a sunlit garden as the evening shadows lengthen. Songbirds hop around me and some settle in the majestic, 170 year old tree that has made me feel somehow small but secure ever since we moved here. I have three beautiful sons starting to make their ways in the world and a wife who loves me, who felt overjoyed when she heard the operation had gone well and who sat by unconscious me in ICU. Together she and I want to plan 'the next stage' of our lives. So what if we have more animals than I would perhaps have chosen or if every so often I'm going to have a health scare? Everybody has something. And cancer is no worse than anything else.
I was shocked at Friday's media treatment of a cancer story. Michael Carberry, a prominent cricketer, had apparently been diagnosed with 'a cancerous tumour'. During the test match coverage Sky's announcer delivered the 'sad news'. A discussion on the same channel a couple of hours later introduced the news in the same way. It didn't need me, a veteran of two 'cancerous tumours' to shout at the telly; 'he's not died!' That was my 14 year old. Happily one of 'Carbs'' former team mates commented that he was a fighter who he knew he would emerge stronger. He will. Please let's get our language right; cancer is not necessarily a death sentence. It's a motley collection of illnesses that need respect and treatment. When it selects you, you learn a great deal quickly.