Adele’s Story

Finding Support at the Right Time

I was told proton beam therapy was a possibility, but not the recommended option. Four different experts all said the same thing: I needed an enucleation — surgery to remove my eye. It was a devastating decision to face, and I felt the weight of it deeply.

Thankfully, the nurses were incredible. One of them took the time to explain everything to me clearly, in language I could understand. She helped me feel informed, and that made all the difference. I realised it was the right decision, and within five weeks I had the surgery.

That’s also when I found Ocular Melanoma UK. Their closed Facebook group was a lifeline. Everyone in the group either had ocular melanoma or had gone through something very similar. I could ask questions, read about other people’s journeys, and feel less alone.

Unlike other places on the internet, it wasn’t overwhelming or filled with misinformation. It felt safe, supportive, and human.

Living Life After Diagnosis

Now, I’m back at work. I’m driving again, even if it’s not my favourite thing! Some things take more effort, sure, but there’s very little I can’t do. Life has changed — but it hasn’t stopped.

Looking back, the difference between where I was then and where I am now is huge. And everyone’s journey is different, but I’d say this to anyone going through it:

Take it one day at a time. Go at your own pace. Don’t try to do everything at once. And above all, know that you’re not alone.

The Facebook group was especially helpful in those moments when I didn’t feel like talking. Sometimes, just reading other people’s posts — seeing the questions and answers — was enough to feel a little less afraid.