Playing my part in “Cancer Can Do One!”

When a rare illness barges into your life, it has a habit of moving the furniture without asking. In my case, it felt like I’d moved house. I’ve spent years working in communications and as a broadcast journalist, handling crises, unpicking complex stories, making sense of the noise. Yet nothing in my professional career suitcase prepared me for the moment I first heard two strange, alien words: ocular melanoma.

I had never heard of it. Not once. And in the space of a fortnight, between diagnosis and surgery, I found myself on an accelerated crash-course in a disease so niche, so particular, that even seasoned medical professionals often speak of it with caution. There was the cancer itself, certainly, but also the world it ushered in: prosthetic eyes, monocular vision, blurred data and a sense of isolation that was new an unwelcome.

Recently, I joined former journalist Mike Kinnaird on his podcast “Cancer Can Do One!”, which explores how we talk about cancer and how we support those living through it. Our conversation was frank and surprisingly cathartic. In telling my story, I realised how much of it speaks to the wider experience of we rare disease-bies, navigating systems never quite designed with us in mind.

Shock, awe – and a strange silence

You might imagine that someone who has spent a career in communications would instinctively reach for words when the worst happens. I didn’t. My first instinct was to go inward. Survive the day. Manage the logistics. Preserve what little emotional energy remained. My close friends gently teased me that I’d slipped into “crisis comms mode”, briefing them as if they were attending a media training session: “This is what you say. This is what you don’t say. This is how I’ll probably react.” They found it helpful, they told me, though slightly terrifying.

It took more than a year before I was ready to speak to the public, and when I eventually wrote about my experience in The Times, I thought I was prepared for the response. I wasn’t. The impact was overwhelming, at times almost disorientating. But there was also extraordinary comfort in it. People with ocular melanoma reached out, relieved that someone had articulated their story. People without it reached out too, especially men who admitted that they had never quite managed to express their own emotional responses to cancer.

Misguided misinformation

One of the first surprises was how little reliable information exists online. My ocular oncologist warned me early on that the data around ocular melanoma is inconsistent or incomplete; skewed. It is simply too rare. When I did venture into the digital wilderness, I discovered very quickly how terrifying and misleading it could be. So, I stepped back. I chose instead to rely on my consultants, including the brilliant Professor Mandeep Sagoo at Moorfields, who would, with refreshing honesty, sometimes say, “We just don’t know.”

This is the reality of rare cancers: fewer clinical trials, less funding, less commercial incentive for pharmaceutical companies. It is a numbers game, and on paper, the numbers don’t work. By contrast, skin melanoma has benefited from extraordinary breakthroughs in immunotherapy. But those developments don’t translate neatly to the eye. For us, options remain limited. Even promising treatments, such as chemo-saturation therapy for liver metastases, remain caught in limbo when it comes to NHS access. It is progress, yes, but slow, incremental and uneven.

Accidental support

One of the most astonishing chapters of my story is that I found another ocular melanoma patient living less than a mile away from me in southwest London. So unique is our story that we’ve been written about in The Times and invited on the BBC Woman’s Hour to tell our story.

Jo and I share not only the same cancer, but the same eye removed, the same surgical team, the same prosthetic specialist and, in a delightful piece of cosmic symmetry, two two-eyed cats each. And partners called Mark. She went through it a year after I did, and a mutual friend put us in touch. Our parallel lives still amaze our consultants. The only difference is the side of eye we had out.

Yet this coincidence points to something missing. Unlike those with more common cancers, I wasn’t ushered towards a ready-made support network. Of course, I could have sought one out, but the truth is that you often don’t know what you need until you feel its absence. The care I received was excellent, but emotionally and psychologically, there is a strange solitude to rare cancers. You are discharged back into your life, told to return for surveillance scans every six months, and left with the uneasy knowledge that if your disease returns, the next steps may involve clinical trials or treatments on the edge of established science. It leaves you vulnerable, suspended in a kind of medical grey zone.

Facing the physical reality

People often ask about the physical side, though they rarely phrase it directly. So let me. How would you feel if you were given two weeks’ notice that your eye would be removed? It feels medieval, even when you know it’s lifesaving. At one point, during the chaos of COVID, sedation was suggested instead of a general anaesthetic. I refused. Obviously.

We live in a society intensely focused on appearance, and I’d spent years on television as a journalist. Losing an eye is not something you glide through gracefully. The shock of waking up bandaged, bruised, swollen, and knowing that you’ll soon have to meet your own reflection is indescribable. I approached it slowly, glancing for a second a day, then two, then three. A quiet, private challenge.

When I received my interim prosthetic, friends excitedly called it “Liberation Day”. But the reality was harsh. It didn’t match my other eye; the iris was larger and a bright, unfamiliar blue. I felt like a circus act. Seven weeks of that. Being stared at, feeling conspicuous, adjusting again and again. The bespoke prosthetic was different. Remarkably close to my real eye, it finally allowed me to move through the world with something approaching normality. Though, even now, I sometimes feel as though it stands out more than it does.

Are you newly diagnosed?

When people ask what I’d say to someone diagnosed today, I offer a few truths. Firstly, you will be more will be okay than you can possibly believe at the start. Secondly, communities do exist. They may be smaller, less visible and harder to find, but they are there when you’re ready.

And finally, a warning. Information is not always illumination. In the age of algorithms, much of what appears online is skewed, recycled or stripped of context. Hold it lightly. Trust your medical team. Protect your emotional bandwidth.

A line from Salman Rushdie’s Knife stays with me: “We would not be who we are today without the calamities of yesterday.” I’ve come to see something quietly empowering in that. Those of us with rare cancers occupy a peculiar space. But there is strength in it too. We are, in our own way, distinctive. Unique. Special.