Changing the conversation about work and cancer

Home Straight

Melvyn the Melanoma has finally got his way and we’ve reached the home straight. I’ve now been transferred from Addenbrooke’s Hospital to Macmillan Nursing and the hospice care team. To digress (yes, already !), half of my male ancestors were fishermen, and I recall that they used to talk about the great pre-War skippers who could always find the fish. The expansion of radar after the War meant that by the 1950s any fool could find them and hoover them up. The old tricks were soon lost, and the seas were soon empty.

Why am I telling you this ? The only one of those tricks I remember was about finding mackerel. In the local vernacular, this meant looking for ‘hoss-pissy water’ (water the colour of horse piss), so naturally this is the first thing I think about when I hear the word hospice. To further digress, my other seaside memory at this time is of a song by my favourite French singer, Georges Brassens. He pleads to be buried on the beach at Sète, his home town on the banks of the Mediterranean. Perhaps a mermaid will pass from time to time for a little posthumous dalliance. Well, I’m from Lowestoft, which soon knocks that idea on the head. Any passing mermaid will have strayed way off course, and if she doesn’t beat a hasty retreat will certainly die of cold in the easterly wind. As Voltaire said : ‘don’t even bother to speak to an Englishman when the wind is in the east’. In Lowestoft it almost always is.

So I’m now in the hoss pissy water. It’s taken longer to get there than it should have. In 2017, when I was diagnosed as Stage 4 cancer, I was given about 18 months to live, so I’m certainly not complaining. I even suggested to Melvyn that we should call it a score draw, but he wasn’t keen. He pointed out his skill in choosing his moment, seizing the opportunity when I had a very nasty surprise last summer. Sudden chest pains after Saturday breakfast landed me in a blue-light ambulance to Addenbrooke’s and a nine-hour operation at next-door Royal Papworth. I remember nothing until five days later, when I finally emerged from intensive care. I had suffered an acute dissection of the aorta, not a clever move, as the aorta is what moves the blood around the body. One of the doctors told my daughter that they thought I had a one per cent chance of survival when I came in, so the only one complaining was the Grim Reaper. I continued to be a very lucky man. But the cancer treatment had to stop till I was strong enough to have more.

Morphine made me as loony as the proverbial fruit cake, so I still couldn’t really work out what had happened. On one occasion the World Triathlon Championships from Sunderland were on the TV and my family thought that might be of more interest to me than the usual daytime fare. I used to work in Sunderland and I used to do triathlons, so I sort of understood the location and what was going on. What I couldn’t work out was why I was in Sunderland, seemingly watching the events from a bed in someone’s sitting room. Is there no limit, I wondered, to the milk of human kindness?

Recovery took a while, and the break from the immunotherapy treatment, which had served me so well, gave the malevolent  Melvyn his chance to make hay while the sun was shining elsewhere. When I had further scans a few months later, we discovered that he had been cultivating his garden with a nice crop of further tumours. It was now too late for immunotherapy to do any good, so in a desperate final throw the consultant decided the only solution was to re-try one of the drugs, Dabrafenib, I’d had back in 2017. This time, I wouldn’t take the other drug with it and I’d have a smaller dose. The previous time I’d taken it it had attacked the tumours but then sent my liver crazy, so we had to proceed with caution. I did not wish to be re-acquainted with my old adversary, Billy Rubin (normal range in blood tests 0-20, my figure 237), in spite of the spring attraction of turning the colour of a giant daffodil. It took three months to recover from that.

So I started the trial and it worked for two days. On the third day it had already started its tricks. I began to shiver, my wife took my temperature, 38.5, and, this time knowing the drill, we were on our way to A&E. By the time we got there the full delights of Dabrafenib were already kicking in : shivers, high temperature, the grisly rigors, and, as a special treat, the nausea and sickness. I was immediately given a smart new card, warning everyone that I was at risk of neutropenic sepsis. As a linguist, I was naturally pleased to learn some new vocabulary to show off with, even though I hadn’t a clue what it meant. I soon discovered it was a useful phrase because it seems to get you straight to the front of every queue.

I can however pass over a hot tip about getting space for yourself in a crowded waiting room. Throwing up over everything seems to be a sure-fire winner in that respect, though not in many others. I was quick to oblige. They worked on me all day, concluded mid-afternoon they’d have to keep me in overnight, and then, having found me a bed, made a late decision I was looking well enough to go home. That, of course, was the end of the Dabrafenib experiment. The consultant had run out of tricks. Without using the same words (I know this will surprise you) he effectively said : ‘sorry, it’s the hoss pissy water for you now my lad’. I was cooked as a mackerel. ‘Think months rather than years’, he added.

I’m now discharged from the hospital and further treatment and in the hands of the hospice team and my excellent GP. I’ve already met a hospice consultant and know that this care will be just as good as all the rest I’ve received so far. I’d prefer to die at home, as I expect most people would, and as long as nothing too nefarious occurs in the next few months that’s what I’ll do. The hospice care will be provided by support at home, and equipment will be available as and when I need it. On top of all that, my daughter Marian, a nurse by profession, has experience of both intensive and palliative care, and her knowledge has already been invaluable.

Therefore I continue to be a very lucky man, the cat with nine lives, or at least the one who swallowed the cream. I don’t have a problem with dying. Being a genius I’d already worked out that Stage 4 would eventually be followed by Stage 5, which no-one talks about since death replaced sex as the main taboo subject in society. Death is not a thing that gets discussed at all in our day and age. Which is strange, because it comes to us all in time. Times have changed. I remember as a young child seeing my grandad lying in an open coffin in the front room and going with my nanna to lay out a body, one of her roles in the parish. Death was all around us, not brushed under the carpet.

My approach, for what it’s worth, has been never to ask ‘why me ?’ ‘Why not me’ is a much better question. Try always to be positive. Sort out what’s important, your family if you’re in the fortunate position I am of having a loving one, and what’s not important, usually the day-to-day hassles of life. Above all don’t take yourself too seriously, and if you can laugh, do, as often as possible. Like me, Ozymandias and everyone else, you’re just a grain of sand in the desert of time.

This may be a final sign off, but who knows ? This old cat may still have a few mackerel to catch. Or he may have had his chips. No worries ! I’ll happily go out with a plate of fish and chips, probably the very definition of a ‘good death’. As for a valediction, I think George V’s supposed last words of ‘Bugger Bognor’, were simple and clear. In my case, ‘Bugger Melvyn’ will be less omomatopoeic but much more apposite. At least, contrary to the received wisdom, I can take that little swine with me when I go.

Harmer Parr,

March 2024