Changing the conversation about work and cancer

Black Spot

I have probably bored too often with tales of Melvyn, my very persistent melanoma. Melanos means ‘black’ in Greek, the black spot. Working with cancer was where the journey started, twenty-six years ago. I had the classic, itchy spot on the back, and classically ignored it for a few months (memo to self and others: never do that). Once identified as a malignant melanoma, it was quickly removed. ‘I think I got it all’, said the consultant, ‘but you never know’. We were moving house at the time, and my insurance premium suddenly went up from £15 a month to £90. I protested, but slowly I realised that a melanoma was a more serious problem than I thought. With no other symptoms at the time, it was not difficult to continue working, which I did happily for the next ten years, pausing only occasionally to think ‘he must have got it all’. As if.

The next development was in the form of a large lump that suddenly appeared under my arm. I was whisked into hospital and the lump was removed, together with all the lymph nodes in that armpit. As suspected, it was the melanoma. ‘I removed it and the contents of your armpit’, said the consultant. ‘I think I got it all, but you never know’. Being a lucky devil most of the time, I’d never had any time off work before. Now I had an enforced month to recover and reflect. I was a year off retirement age, and began to think about going early. I could still do some freelance work, but could choose if and when to do it. So working with cancer became living with cancer, which I did happily for the next ten years, until Melvyn’s most sneaky move yet.

I was still heavily into running, cycling and doing the occasional triathlon. The Saturday morning Park Run was a particular pleasure, and I was still improving my times. I was keen to get to seventy, because when I did I was likely to be able to win that age category. I never quite managed that in the 60-70 group. Melvyn again had other ideas. I started to have bad leg pain after running, would take a break, try again, but with the same effect. I thought it was the recurrence of an old football injury, but an X-ray proved me wrong. The melanoma was in the right tibia, a classic bone cancer which I would never have suspected. As Melvyn’s fairy dust had been sprinkled in the liver and lungs as well, I was now Stage 4, and basically ‘terminal’. They gave me about 18 months. I worked out that Stage 5 must be the one that never gets named. It is deeply protected by superstition. Don’t mention death and it may go away. I was now living and dying with cancer, locked in a less than cordial dance with the Grim Reaper.

The first treatments I had were two pills to take night and morning. If they’d been designed to make me feel wretched, they couldn’t have been more successful. I became very ill, had to stop all treatments, until suddenly a new wonder drug appeared that seemed to suit me very well. Pembrolizumab, a form of immunotherapy took a different approach to other treatments. Instead of attacking the tumours directly, it taught the immune system to do the job itself. Previously it had allowed itself to be conned by the cancerous invaders who presented themselves as friends. The

immunotherapy taught the immune system to recognise them and attack them, rather than welcome them in as previously. The new regime started, with three-weekly infusions of the wonder liquid which prevented further growth of the tumours.

As the treatment was still essentially experimental, it was decided after a few months to start a trial whereby half the participants would stop the treatment and the other half would continue. The aim was to see if the immune system was now able to do the job itself. I was in the group that stopped the treatment, and continued without it for around a year. The trial was somewhat compromised by the outbreak of Covid, so analysis of the results was never quite completed. In the end, I had to go back to the treatment, although the interval between infusions lengthened to every three months rather than every three weeks. This was not a difficult regime to follow: a couple of hours of treatment every three months seemed a small price to pay, particularly when the treatment included a cup of tea and a Bourbon biscuit.

I’ve read this week in the newspapers that pembrolizumab is now being used in combination with DNA from the patient’s tumours to create a vaccine, which may turn out to be a very significant treatment for bowel cancer and perhaps other cancers as well. It’s a good example of how things move on, and further research and development can suddenly make previous approaches seem old-fashioned. It is a similar development to the arrival of pembrolizumab on the scene in 2017, from which I benefited so much. It is also a reminder that we can only live in one time slot, and that things that kill us now almost certainly won’t in a few years time. Unfortunately, ‘can I come back later?’ will not be an option.

After nearly seven years of living quite comfortably with cancer, something had to give. And it did. Sudden chest pains after breakfast on a Saturday morning came with no warning whatsoever and sent me hurtling towards Addenbrooke’s hospital in a blue-light ambulance. I was quickly assessed and transferred to Royal Papworth and the operating table. Nine hours later I was coming round from the anaesthetic. I had suffered an acute dissection of the aorta, but as usual my luck was in and I had one of the best surgical teams in the country. A long recovery period beckoned. I was too weak to have further immunotherapy so the treatment for the cancer was stopped. Five months later further scans showed that Melvyn had taken his chance and made hay while the sun was shining elsewhere. The consultant told me that my tumours were now beyond the reach of immunotherapy or indeed any other treatment. So I’m now on palliative care, designed to make my last months as comfortable as possible. Dying with cancer, the last stage of my journey.

Emotionally, this final phase is not a problem for me at all. It was always going to happen one day, and I can hardly complain about the time it has taken to get me to this stage. I am not tortured by religious doubts, nor do I have any expectation of spending eternity singing hymns with saints or cavorting in Arcadian groves. As a long-term lover

of French Romanesque churches I always thought that the sculptures on the wicked side of Christ in Majesty looked much more interesting, although the thought of being fed into an oven with a toasting fork by a small, malevolent devil was not exactly appealing either. As Philip Larkin put it, ‘death is no different whined at than withstood’. He was terrified by the thought of ‘not being anywhere, and soon’. I’m not, but then again I have no imagination!

Unfortunately the palliative journey is no clearer than the rest. ‘Think months’, the consultant said, without indicating how many months that might be. A few things are obvious already. The ‘journey’ will entail a progressive slowing down as the life is dragged out of me bit by bit. The main symptoms so far are progressive weariness, accompanying breathlessness, difficulty in enjoying food which never tastes quite right, problems climbing the stairs or getting up from low chairs. Suddenly things you’ve taken for granted all your life become a problem.

But how pitifully trivial these changes are: annoying, inconvenient, but at the time of writing I’m thinking of all the sacrifices made by a previous generation as the D-Day memorials proceed. My generation was never required to make such sacrifices. At the age when we might have been sent off to war, we were experiencing all the advantages of rapid upward mobility. With our full grants and the expectation we would proceed to university from our grammar schools many of us, me included, were lifted out of a life of potential turnip picking to one of middle class comfort and respectability. We have had, for the most part, an easy passage through life. My brother’s sudden and and gruesome death in warfare and the deaths of others in conflict are a reminder that it doesn’t have to be that way. So yes, Rishi, I would have stayed to the end. Bad call.