Glasgow-born consultant radiologist Roger Chisholm has had Multiple Sclerosis since he was 27. Earlier this year, he was diagnosed with a brain tumour. Here, he explains how he came to terms with saying goodbye to everyone - and everything - he loved.

I’VE always used toeclips when I cycle. For people with MS, they’re particularly useful, keeping your feet exactly where they should be on the pedals. It can be a bit exasperating when you can’t get your feet into them, but once they’re in, they’re in.

At the start of 2017, though, I noticed something new. In all the years I’ve cycled with MS – almost four decades – I’d never had any trouble getting my feet out of the toeclips. Yet now I did. One day, as I cycled home from work, I managed to fall off my bike twice within ten yards of my front door. I tried not to worry: I had been walking a lot around the hospital at work, and maybe my legs were just more tired than usual. But my falls were becoming more frequent, even on the 15-minute cycle ride to work. I had cycled that route almost every working day since 1989, and this had never happened before.

But there was worse to come. I found that my left leg was becoming so weak that I could no longer even lift it to the pedals. This, I reckoned, must be another sign of secondary progressive MS – the stage the disease reaches when relapses stop and gradual deterioration begins – that I’d been told to expect five years previously. I was also becoming increasingly depressed, but I reckoned that was probably MS-related too. If you had spent your life trying to defy a disease and it was tightening its grip on you, depression seemed an entirely natural reaction.

Just to be sure, I had a scan at the hospital where I work as a consultant radiologist in the north of England. The following morning one of my colleagues came to see me. I’d known Amit for years. I trained him as a registrar and had been on the appointments committee 18 years previously when he had been made a consultant. He is a lovely, sensitive man.

“Amit,” I said, “is there a cause for my weak left leg?”

He nodded. There were tears in his eyes. He showed me the contrast enhanced images and discussed the diagnostic possibilities. What was most likely, he said, was that I had an aggressive brain tumour. I saw my brain surgeon the next day, and she agreed to operate in five days’ time,

My mind raced around what my life would be like after the operation. First of all, how much of it would there be? Days? Months? Years?

I am the kind of person who likes to set a goal and work towards it. Climbing was like that, so too was sailing, and so, I suppose, was my career. But this was different. This was like setting out on a tightrope walk over a chasm where you couldn’t see the other end, and where the rope could be cut at any time.

Like any man my age – I was 65 – I had lost far too many friends who had died too young. Like any doctor, I had seen death up close. But in those five days, thoughts about death weren’t the only ones spinning into my flywheel mind. Brain operations could easily go wrong. Remove too much of the tumour, slice off a millimetre or so of working, thinking tissue, and what then? My mind, still working frighteningly well and imaginatively, threw up all possible variants of a bleak future. Wheelchair-bound, incontinent, babbling versions of myself stared back in my mind’s eye.

The prospect horrified me. Granted, it would horrify anyone, but I think my years of MS made it even worse.

This wasn’t vanity; it was fundamental. My whole personality leads me to seek out and live a life of freedom, friendship and, to the extent allowed me, adventure. Judge a man by what’s on his screensaver: Half-Dome, the huge granite cliff in Yosemite, one of the great free-climbing challenges. That’s the direction in which my mind works, even if my body no longer does.

I had fought to make my own way in life despite MS, to use my brain and lead a useful life. But however the operation worked out, it was going to bring down the shutters on the kind of independent life I wanted. Friends, then and now, counselled acceptance. That’s easy to say, and doubtless wise. But I was in no mood for acceptance.

Those five days didn’t take long to pass, and after a night in which my mind bubbled over with thoughts of the future, I got up early and was in surgical admissions at 5am. Oddly enough, given that I’ve spent most of my life in hospitals, I’d never had anaesthetic or an operation: indeed, I’d only ever spent one night in a hospital as a patient in my life. Still, I knew what to expect. A brief chat with the junior doctor. Then the consultant anaesthetist. Then the surgeon. The needle in my arm and the loss of consciousness.

I woke up a few hours later. The anaesthetist was talking to me. It was indeed a malignant tumour, he said. They’d done the tests and taken out – debulked, to use the terminology – as much of it as they safely could.

What he didn’t spell out then – but what I knew was true – was that some of the tumour was left in my brain, that it would grow back, and that it would kill me.

Before I sank back to sleep, I did a quick bit of mental arithmetic in my head to see whether my brain was working. Seven times eight was, mercifully, still fifty-six.

It’s six months later and I am sitting writing this in an end of life nursing home. They’ve given me a room on the top floor because they know how much the sea means to me and I have a great view of it from up here. Since July I’ve been able to watch the dinghies flutter about in the bay half a mile away.

I’m here because it’s where my cousin Rosemary works. She’s one of the most caring people I know; 73, and still looking after crocks like me out of the boundless goodness of her heart. She’s so cheery that I always look forward to seeing her. She knows I’m working on a book about my life, and the other day she asked me what I was going to call it. I said I didn’t know. “Have you any ideas?” I asked.

“You could always call it Tits Up,” she said.

Well, it made me laugh anyway.

I know how books like this are supposed to end. There’s usually something about the circularity of life and acceptance of death. I could easily, if only it were true, wrap up this story like that. After all, here’s cousin Rosemary coming into my room to cheer me up, and she’s still the same warm-hearted, kind person I remember from my childhood when she lived a mile away across the valley. That sea I often catch myself looking wistfully across at is the same sea my father sailed us across in 1969, as my love of sailing began to grow inside me like, well, whatever the opposite of cancer is.

All of that is true, but it’s not the whole story, and if you can’t tell the whole story when you’re facing up to death, what’s the point in telling your story at all?

When, six months ago, in my still-drugged state, I heard the anaesthetist confirm that I did indeed have a malignant brain tumour, I closed my eyes in despair and dropped off back to oblivion. Deep down, although my mind was still whirring through all kinds of different potential futures, the thing I felt most was a primal sense of unfairness. All those years of multiple sclerosis – four whole decades, almost – and now this? Forty years of building a career, of saving up for a retirement in which I could spend more time with my children, sailing with friends or at our family cottage – and now what? All those years of trying not to be defined by disease and – bang – here comes another one right on top of it, one that there was just no way round.

It made me bitter. Friends and family have, I know, come away from visiting me shocked at how angry I was, how much I wanted to commit suicide. At least if I did that, I thought, I would be taking back control. I wouldn’t just be waiting anxiously for the tightrope to nowhere to be cut: at least I would be in charge of my own death, just as I had been of my life.

Back in May last year, as I began 30 solid days of radiotherapy and chemotherapy, I felt less in control of my life than I ever had been. My mind was racing through a succession of different but usually equally horrible futures, and at the same time the treatment schedule was piling up. I was a cork borne along on the terminal illness river: every day for 30 days I had to be at the hospital as the treatment got underway. If I didn’t have any, they told me, I’d be dead in six months. If I did, well, who can say? Twelve months? Eighteen? There are some cases the oncologists can’t explain where the patient might even live for another five years. We all hang on to the hope implicit in “miracle” cases like that, even rational scientists.

So the “miracle cure” scenario went into my mental mix too, but it never really stuck on the churning list of possible futures: I’m too much of a realist. Besides, my legs were getting weaker, whether through the chemo or not I didn’t know, and I was feeling increasingly tired. Tired, and yet also rushed and out of control on the treatment superhighway. If only I could have stilled my mind – or if only there had been time to somehow pull off the treatment superhighway, maybe for counselling, maybe for a longer explanation of what my future – I could have felt as though I was more in control.

By contrast to all of this, suicide did seem the more straightforward option. It was, I read in brain surgeon Henry Marsh’s excellent memoir Do No Harm the one that he himself would choose if he were ever diagnosed with a brain tumour. Besides, my life was a living hell, and I didn’t believe in an afterlife, so suicide was entirely logical. Some people couldn’t understand this. I had been so resilient in the way in which I had dealt with MS, they’d say: why couldn’t I be like that now? Why couldn’t I let go of the anger I felt? Why couldn’t I stop feeling bitter? Why couldn’t I make peace with the world?

Against that, there are moments when I don’t feel like this at all. Friends come round and take me out for lunch. We laugh and remember and life is good again. I love my children more than my own life, I am enormously proud of them both, and know how much they would be hurt by my suicide.

And there’s something else too. Something I realised even at my most profound moments of despair.

It’s this. I have, despite 40 years of MS and a brain tumour, had a good life. Looking back on it, as I have been doing while writing this book, I realise that I have even been lucky.

I may not be able to go into wild places any more, but I will always have the memory of how much at home I felt there. The world has given me so many moments of happiness. Think of what you feel about the beauty of this planet when you watch a heron fishing on flat calm water. When you sail into a loch – Loch Scavaig, say, my favourite – and see seals flopping into the water all around you. When you moor a boat and look down through crystal-clear water at anemones and crabs scuttling over white shell sand. Or when you’re on the hills, sitting down on a heathery slope when you’ve climbed a thousand feet or so, and you’re looking up and working out how much further there is to go, and you can feel the wind sighing against your face or hear the skylark singing its heart out.

And those are just the bedrock memories of what the wild places have meant. Whatever happens in my brain’s right temporal lobe, it knows that I have also seen icebergs off Greenland and sailed under the Arctic sun in Norway, that I have walked 145 miles around Annapurna and taken the high roads of Waziristan, and clambered up an Austrian alpine pass with only one of my four limbs working properly. And because memories are not stored in one distinct part of the brain, my right temporal lobe will know, as a matter of course, that I did all of this while having MS.

The more we think about memories, it seems, the stronger those memories remain in our brain.

And what memories would I want to leap across my brain’s synapses when the end inevitably comes and I slide off towards oblivion? There will be no shortage. As well as all my golden memories of my children, Elinor and Owen, I think I will imagine being in a safe harbour with good friends. Peter will have dropped anchor, Howard will be cooking a meal, I’ll be uncorking a bottle of red. We’ll all be in Village Bay, St Kilda, and if it’s not too much to ask, I’d also like to see the sea-stacks silhouetted in the evening sun.

So many memories. So much life. So much fondness for everyone I met in mine.

And maybe, at the end, I will even imagine myself into a memory my darling mother left behind when it was her turn to die.

It’s the closing lines of a poem she wrote about our cottage in the mountains:

The afternoon drifts by

Too fast and the air turns cool. My daughter moves with her books

Out from the lengthening shadow. My husband stirs

From a sunny doze and his feet crackle under dead bracken.

It is time to make tea, while the radio is promising

Another lovely day tomorrow

This is an edited extract from Don’t Look Down: An Adventurous Life with MS by Roger Chisholm, Scotland Street Press, £19.99 which can be ordered from Waterstones or MyBookSource.com. Revisiting the Dubhs Ridge, an award-winning film about Roger by his friend Howard Steen can be seen on https://vimeo.com/215021897

Revisiting the Dubhs Ridge from Howard Steen on Vimeo.