On being diagnosed with cancer

This reflection started as one about engaging with my own mortality and ends up with me wondering if I need to fight not cancer but my own culture, my own society.

I have always been of the opinion that the diagnosis ‘cancer’ is a meaningless one, even to the point of it being farcical. Well perhaps not pointless or worthless but certainly a diagnosis of cancer today is far different from one say 20 years ago and maybe even 10 years ago. The damage done by the overuse of the term cancer is probably way underestimated and given my recent experiences I think it’s a dangerous one that’s leading to many unnecessary deaths.

Those who are very ill, incapacitated and die are lumped in with people like me whose treatment is ‘inconvenient’ to say the least – that's the bit that feels absurd. I think that I’ll go on using the word ‘cancer’ in the hope that by the end of this piece it will have lost at least some of its shock / fear value.

My first direct experience of cancer was in 1975 with the death of my father when I was just 15 and he was a young 48. I don’t remember it being spoken about directly in public but alluded to all the way along. “It will be weeks and weeks and weeks for his recovery” the doctor at the then Academisch Ziekenhaus in Leiden, The Netherlands told me over the phone. I visited my father soon after this conversation and he wasn’t a happy man or indeed a lucid one, his hands having been tied down to prevent him from pulling out the various tubes that were keeping him alive. He died a few weeks later. The only positive thing in my mind was that it had taken him only three or four months from diagnosis to his death.

Cancer and I came head to head again in the early 1980s. ‘Gay Cancer’ was the label then as young, fit, white, middle class men with no apparent reason to do so succumbed to Kaposi's sarcoma and other terrible ways to die. They died in isolation, shunned by both families and friends. One legacy of which was to present a ‘deathstyle’ more fearful that actually being gay and thus help begin to make being gay acceptable. Around me a whole cohort, peer-group, family call it what you will –died from named and un-named cancers. The announcement back then, of the arrival of cancer was the death knell for the demise that would come as surely as night follows day.

Then I watched many celebrities be diagnosed with various cancers and their response struck me as being very odd. I still remember Michael Landen, he of television’s ‘Little House on the Prairie’, being interviewed about his cancer diagnosis. “We’re going to fight cancer!” he trumpeted as his right arm was raised and he punched the air. I noticed that his left arm stayed resting in his lap as if another part of himself said “Let’s just get on with this and enjoy what we have.” As if this other part of himself was somewhat embarrassed about the overenthusiastic demonstration of determination to live no matter what. That’s just my interpretation of course and maybe it was as much a cultural effect as well, given that many Americans seem to have the view that death is optional anyway.

There is a third element to all this and that is my training as a Neurolinguistic psychotherapist. This training and my subsequent experience means that I can pay attention to my emotions and both guide and be guided by them. I’ve been asked to write more about that.

So when cancer came to me I was quite surprised and yet not panicked or fearful. As I believed that 70% of cancers were curable so all I had to do was take action. I’d had a mole on my ankle for some time and presented it to my GP on a number of occasions to be told that it’s fine and no action need be taken. So when a new blemish appeared and was noticed by my husband we got that checked very quickly and via a different GP got a referral to a dermatologist. That was fine and it was treated with liquid nitrogen. However, the dermatologist said that the mole on my ankle was certainly not. If it had been recent then “I’d have it off this afternoon” she said.

A week or so later off to the hospital to have it removed and biopsied. Back came the results “spreading malignant melanomaClarke level 2 at 0.3mm. Then the word ‘excised’ - removed, eliminated, expunged! So in the course of that consultation I was diagnosed and cured of cancer all at the same time! Maybe that's why I am not getting too over heated about my experience but I am now concerned about the loose talk that surrounds cancer.

My husband tells me that he fears I might not be taking this seriously or seriously enough. Maybe he’s right. I saw the GP on the Tuesday, the dermatologist that Friday and the surgeon the following Wednesday and I was in hospital just 10 days later. Just for the record, all this via private health care and not through my NHS GP. All my NHS GP was prepared to offer was a telephone consultation a day later! (See post script)

I have had cancer and now I don’t. Early detection is the key followed by quick action.

However, my experiences and view of life got me through three weeks and two operations for appendicitis back in 1996. Friends were horrified when I took them through the events but for me I had to get on with it. To quote Terry Pratchett’s character Sam Vimes “You do the job that’s in front of you.” True, that one day in London’s Ealing Hospital when they tried to insert a garden hose into me via my nose, they called it a nasogastric tube, and I fought them off has been the only time in my life when I have felt alone and very, very miserable.

My experience so far with this cancer has been discomforting and certainly inconvenient but not anywhere near as distressing – hence I am more certain than ever that it’s time to call time on the catch-all term – ‘cancer’. I tell people it is or was cancer and the looks they give me are that of joking disbelief and/or fear and more frequently one followed by the other. I wonder if this fear is what is stopping early detection?

The NHS seems to meet the ‘two week’ wait to be seen by a specialist and a 31 day wait for treatment and yet that depends on people recognising that they need to go and see a GP in the first place. Mind you, I went a number of times over two years and was told by two GPs that everything was OK, so how many people are also being missed by unskilled GPs? That’s two stages where people miss out; not going to the GP in the first place and an unskilled GP acting too slowly, if at all. Maybe that's why more action needs to be taken as described here: BBC News Target of four-week cancer diagnosis. I’ve taken my concerns over the GPs to the General Medical Council and maybe that's a post for another occasion.

The Australian code says that a 1cm area of skin around the melanoma should be excised to ensure that all possible cancer cells are removed. When I began to write this piece after the second operation my foot was in bandages and I was using crutches to move around so that the new wound healed fully. I wondered to myself then and now to you – exactly what just happened? I was going about my own business and the universe said “hang on a second” and stuck out its metaphorical foot. I have tripped up certainly but far from fallen over.

So now I have a simple dressing on the wound, I’ve stopped using the crutches and the stiches come out in a couple of days’ time. This has taken just three months from diagnosis to, hopefully, complete physical recovery. It’s not over totally as I then have three-monthly check-ups for the next five years, a schedule guaranteed to keep me checking in with my mortality on a regular basis. On the plus side I’ll know that I am being looked after by skilled people I trust and early action can be taken to ensure that my eventual death is kept at a polite distance – it’s not just peace whose price is eternal vigilance it seems.

What word then can I use to name, label and tie down these experiences? If not ‘cancer’ then what? The word ‘illness’, like ‘cancer’, is too vague. Lesion simply means an injury and is perhaps equally unhelpful. Maybe then just ‘melanoma’, yes a kind of cancer but perhaps less daunting more under control. Melanoma, an easily detected and treated condition that everyone could feel at home with, so much so that getting checked up is as simple as I don't know, going to the dentist?

Ah…..yes ……about that checkup up I meant to book ………..my teeth ……….mmm

Post script:

October 2015

The stiches are out, the wound is looking great and I am back in the gym and cycling again. We go into October with bright skies and winter beginning to pull its weight as the nights close in. And I read that GPs are being paid not to refer people. This gives me a shock. The Guardian reports that there are payments to GPs not to refer people for diagnosis or treatment and the BBC Reports that:-

“GP practices are being paid to help local NHS groups limit the number of patient referrals and cut costs, the doctors' magazine Pulse found.

Appointments affected include scans and consultations with specialists - including those for cancer patients.”

Have I lived through my father’s early death, survived the AIDS crisis and dodged Margaret Thatcher’s reign only to be bought down by the growing gap between rich and poor?

Is it too fanciful to place my, lack of, treatment at the feet of a selfish society that values the possession of things above good health and life?

This experience, fight?, is far from over.

I am not paranoid, but maybe I should be, just maybe I need to be…….

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