Lee’s Story

Finding Support at the Right Time

At diagnosis, my oncologist recommended I visit Ocular Melanoma UK’s website. That simple recommendation led me to an incredible source of reassurance and support.

The information on the website was clear, well-written, and not at all frightening. It gave me what I needed to understand the journey ahead without overwhelming me. I joined the Facebook group a little later, where I found real-world advice and community wisdom. Coffee mornings, shared stories, and practical tips — like how to wash your hair after surgery or even which TV to buy when your depth perception changes — were surprisingly helpful.

One of the biggest surprises? Realising how kind people around me were. My neighbours helped clear my home for trip hazards before surgery and even took turns walking me afterward. Friends showed up in ways I’ll never forget. You really learn who’s in your corner.

At OMUK’s online meetups, the team offered knowledgeable, calm support. They helped answer questions I didn’t even know I had. And more importantly, they made me feel safe. I could be honest without shielding anyone from how I really felt — something that’s hard to do with friends and family who are emotionally invested.

Living Life After Diagnosis

I try not to play the “what if” game. It’s tempting to wonder whether an earlier scan could’ve changed things — but it doesn’t help. I focus on moving forward.

Recovery has been a journey.

“Two months after my surgery, I went to Rome alone. I wasn’t sure how it would go — but it was bizarrely normal.”

My brain has adapted in ways I didn’t expect. I even spotted a bus number before my friend did — and she has both eyes!

That’s not to say every day is easy. Some days, I feel blind. Some days, it’s just harder to see and harder to be. But over time, it’s gotten better. There are still situations — dim lighting, crowds, busy pubs — that make me nervous. But I’ve learned tricks. I’ve gained confidence. I’ve even had to laugh at myself — like the time I tried to fill a glass and sprayed my face instead!

My appointment with the ocularist, who created my prosthetic eye, was one of the most enjoyable medical experiences I’ve ever had. Their skill and compassion really left an impression.

I’ve also realised how crucial optometrists are. Mine spotted the signs of melanoma when I just thought I needed new glasses. We need to do more to promote eye health as part of regular care — not just vision tests, but real health checks.