Julian’s Story

Finding Support at the Right Time

The medical team who took over my care were extraordinary, compassionate, professional, and full of hope. They recommended proton beam therapy, a treatment that sounded like something out of science fiction.

First, I had surgery to attach tiny metal markers to the back of my eye. These would act as a dartboard for the proton beam. A few weeks later, I spent five days undergoing treatment at the only proton facility in the UK. I wore a mask to hold me still, stared at a red dot, and watched a pink glow fill my eye as the machine did its work.

It was surreal, but it gave me a plan. The tumour couldn’t be removed, but it could be targeted. That meant I had a chance.

What made the biggest difference was the support I found through Ocular Melanoma UK. The specialist psychologist they connected me with helped me come to terms with the diagnosis and the constant fear of recurrence. Their community showed me I wasn’t alone — that there were others living with the same anxieties, the same scanxiety, the same daily reminders of this disease.

Living Life After Diagnosis

A diagnosis like this is seismic. It shook everything I thought I knew about life, time, and the future. But it also gave me clarity. My wife and I no longer save things for “someday.” We bring plans forward, live in the moment, and make time for joy now.

During treatment, my wife brought me Star Wars Lego sets to distract me. I even bought a glowing lightsaber and practised moves in the hotel room between appointments. It sounds daft, but it reminded me that laughter and playfulness are not luxuries — they are lifelines.

I still see the tumour every day. My vision is distorted, sparkling, sometimes surreal. But I’ve adapted. I focus on the small things: the warmth of my wife’s hand, the dawn light in the garden, music that moves me. These things matter more now than they ever did before.