Been referred to ocular oncology at Moorfields…

[Mussyy]

Hospital consultant found large active lesion in my eye, touching optic nerve and leaking fluid under retina. I have an appointment at Moorfields next week for further tests to determine if benign or malignant.

Quick update for anyone who's following or interested. Had the diagnosis confirmed today but fortunately not near the optic nerve so can be treated with a disc. Im booked in for surgery next work but could have gone for tomorrow had the circumstances been right! @GreysAnatomyMeredith if its any consolation the waiting is waaaay harder than the diagnosis (which you hopefully won't get). And the consultant was really positive about the outcomes so although its scary it doesnt feel awful. Hope you get your appointment through soon.

@annonymousnamechange Thank you for the update - I have been thinking about you the last couple of days. That sounds really encouraging, and it is clear that they are really looking after you. Thank you - I am still waiting for my referral but am hoping to hear soon! My local hospital has booked me in for Fluorescence optical imaging this week, so I am hoping that Liverpool are just waiting for that. It all feels very surreal. I am hoping I will feel better once I have definite answers! Good luck with everything, I hope the surgery goes well.

You are absolutely right that the waiting is hideous - it’s just a blank space vacuum that your spiralling mind and Google can fill with horror stories. All I can say was from the moment I was diagnosed every thing was expedited and accelerated. Everyone was incredibly professional and I felt hugely cared for and supported. Glad that your radiation procedure is so soon. It’s much better on the otherside.

There is a lovely patient support charity for those with ocular melanoma called Ocular Melanoma UK (used to be called OcuMel). It has a Facebook group and there are lots of wonderful people there who understand the journey and are a great source of information and support.

Stay strong, will be praying for you x

Thank you for the good wishes, im now organising myself for next week and wondered if anyone had any tips or advice? Im planning on downloading stuff onto a tablet including audible. Maybe some puzzle books and also some snacks. I imagine 3 or 4 days in the same room will be pretty tedious so any survival tips will be very appreciated! Thank you

I took crochet, books, puzzle books....to be honest it was quite uncomfortable so spent most of my time listening to audiobooks with my eyes closed, or watching re-runs of things I knew well so it didnt matter if I drifted off.

I got up each morning got dressed and sat in the chair then moved back to bed at night, though it was tempting to stay in bed! Especially the first morning when I was a big groggy and nauseous.

Best of luck.