Hi how are you?

Please share your experiences if that is OK. I too am facing the journey.

Thank you

Lisa

Hi Lisa,

Replies on here are a bit slow I find. I recommend you search out Ocular Melanoma UK. They are a charity dedicated to eye cancer and there is an active Facebook community with online meetings.

I am 2 years post-PBT now. The tumour has not grown at all, so that is the main thing. However, I continue to suffer problems with that eye - uveitis, high pressure and poor vision. Not sure it wouldn’t have been better to have had it removed in the light of what I know now, but it’s always an individual decision.

Hope you are getting through things.

Simon

Hi Simon 

Thank you for your reply.

Im Struggling I have joined that group.

I'm not sure if it's working for me, the comments although upbeat are also very scary.

It feels like a death sentence, not having more ways of dealing with it. 

Sorry to be so negative. 

Lisa

Sorry to hear that Lisa.

Whilst some people with our condition are having poor outcomes, I don’t think it’s inevitable. We all travel on our own individual paths. Early on, I found myself in a video call which included someone whose cancer was advanced and they were facing a very difficult time. It scared me and I haven’t been back to that group. It isn’t where I am and I hope I never will be. 

A lot of the time, I am able to just get on with my life but every now and again thoughts intrude about what might happen. I guess that effects is all differently depending on our circumstances, family situation, etc. As a sixty-something, I arguably have less to lose than a younger person might? I did speak to a counselor through Occumel around the time I had PBT. It was very helpful. I’m actually thinking about doing it again - a couple of things have recently knocked my equilibrium and it might help. Might that work for you? It can help to have someone outside who you can speak about all the dark fears to.

Simon

Hi Simon,

Thank you for sharing with me.

I have my cytology appointment at 9am tomorrow. Saturday at 9.30 I have a call with the counsellor. 

I'm 57 with a daughter of 25 and a son of 30.

Was looking forward to grandchildren and hoping this will all be possible.

I'm sorry to hear you maybe having a wobble

im expecting this will be the case with myself throughout my life. 

Thank you once again. 

Lisa

Hi Simon,

Thank you for sharing with me.

I have my cytology appointment at 9am tomorrow. Saturday at 9.30 I have a call with the counsellor. 

I'm 57 with a daughter of 25 and a son of 30.

Was looking forward to grandchildren and hoping this will all be possible.

I'm sorry to hear you maybe having a wobble

im expecting this will be the case with myself throughout my life. 

Thank you once again. 

Lisa