Living with a rare cancer: Why should I have less chance of survival?

Rare cancers are, by definition, unusual. But living with one feels completely universal – the fear, the uncertainty, the fight to reclaim your life. My journey with ocular melanoma has been a lesson in loss, resilience – and the power of telling my own story to help others and raise awareness.

A diagnosis I’d never ever heard of

I’ll never forget the moment I was told I had ocular melanoma. It was a grey humdrum day, and I remember staring at the consultant as the words landed, not really understanding. A rare cancer. In the eye. I’d never even heard of it before. Cancer, yes – we all know someone, I my case my mum and best friend – but in the eye? It felt surreal. Scary. And certainly shocking.

When the dust settled a little, the word ‘rare’ made the volatile situation feel even more uncertain. We often use rare in our lexicon for things that are positive: rare diamonds, rare sightings, rare talent.

But I knew straight away that ‘rare’ in the context of cancer means fewer answers, less research, and not many people who’ve trodden this path before. It’s as if the ground falls away beneath you and you’re left without a map.

What ‘rare’ really means

Having a rare cancer means you carry two battles at once. The first is with the disease itself, the second is with the uncertainty. With common cancers, there are established treatments, endless resources, support groups bursting with people who understand. With ocular melanoma, there are fewer trials. Less data. More questions than answers. Telling friends and family is akin to being a schoolteacher – educating on new subjects. And yet, I’d only just learnt the topic myself.

And then there’s the isolation. You don’t bump into someone in the waiting room who says, “Oh yes, me too.” You can feel like the only one. I found myself scouring the internet late at night, searching for stories, blogs, anything to prove I wasn’t alone. Until I met my (now) one-eyed comrade, Jo – you can read about our parallel rare eye cancer stories here in The Times.

Facing enucleation

Nothing prepared me for the word enucleation. I had to Google it – surgical removal of the eye. When the doctors explained why it was necessary, they were calm, professional, careful. I listened, nodding, but inside I was reeling. How do you begin to process losing an eye? All with two weeks’ notice?

The day of the operation, I felt as though part of me was being erased. Waking up afterwards was brutal. I touched the dressing, I looked in the mirror, and I felt the absence where there had once been presence. It was grief, pure and simple. The loss of an eye isn’t just physical – it shakes your identity; it challenges your sense of self.

But strangely, in that same moment, something else stirred: determination. I realised that if this rare cancer was going to strip me of something, I had to find something else to hold onto.

Turning to storytelling

I’ve always worked with words. As a journalist and communicator, language has been my craft, my way of understanding the world. After the diagnosis, writing became my therapy. At first, it was just scribbles in a notebook, emails to family, private words to make sense of the chaos. Then slowly, I began to share more publicly. And always, candidly. Starting with ‘going global’ with this piece I wrote for The Times.

Storytelling gave me power back. When so much felt uncertain, I could at least take ownership of my narrative. I could write honestly about fear, about loss, about resilience. And in doing so, I began to connect with others. People reached out – some with the same diagnosis, some with different rare cancers, all wanting to say: “I understand. You’re not alone.”

That’s when I realised my story wasn’t just about me. It was about visibility. Rare cancers need voices. We can’t stay hidden in statistics and medical journals. We need to be heard.

The hidden weight

What most people don’t see is the long shadow rare cancer casts. The surgery heals, the socket recovers, but the emotional impact lingers. Every scan appointment carries dread. Every twinge makes you wonder: is it spreading?

And then there’s the everyday challenge of how people respond. Some avoid the subject, uncomfortable. Others offer platitudes. Very few ask, “How are you, really?” I’ve learnt to carry both bravery and vulnerability. Some days I feel strong, other days the sadness comes back sharply. Unfortunately, my diagnosis never quite leaves the room.

Why rare cancers matter

If I’ve become outspoken, it’s because I’ve seen the gaps up close. Rare cancers often fall through the cracks. Great work is being done by the likes of Ocular Melanoma UK and in the US, A Cure in Sight – you can listen to my ‘Eye Believe’ podcast here. But research funding is harder to secure. Clinical trials are fewer. Patients end up advocating for themselves, campaigning for awareness, seeking out the specialists hidden around the country.

But our lives are no less valuable for being rare. We deserve the same attention, the same urgency, the same compassion. Raising awareness isn’t just about me – it’s about every person who gets that lifechanging diagnosis and wonders, “What now?”

Reclaiming my story

Yes, I’ve lost an eye. Yes, I live with a rare cancer. But I refuse to let that be the end of the story. What cancer took physically, storytelling gave back emotionally. Sharing my journey has connected me to others and, I hope, offered them some of the reassurance I craved at the start: that you are not alone, even when your cancer is rare.

***

Do reach out…

Any questions about monocular vision or living with ocular melanoma, please do ping me an email. And do follow my story on Instagram: seeing_life_clearly.