Just diagnosed

Hi,

I am sorry to hear about your diagnosis. It really sucks and is very stressful. I had the same diagnosis when my daughter was 6 weeks old, so I know what you are going through. Especially feeling like 'this can't be happening'.

Although it is worrying, I thought you might like to know that I haven't lost the sight in my eye completely. For the most part it is fine. There is an area in my vision that has gone black, which I can only really notice when I shut my good eye. I can still drive, read, use the computer etc as normal. The only real issue I have is I am really sensitive to light, but I have been told that will get better as time goes on. I just wear sunglasses, even now in winter. I also bought some blue light glasses from Amazon, which really help indoors. 

I had surgery in Liverpool in April 2021, then proton beam radiotherapy in May. You are you in good hands, all staff were friendly and helpful. Always had time for me. 

I am not sure if it is the same for everyone, but for me the recovery after having surgery was about two weeks. I went home on the same day. I couldn't open my eye for a couple of days, but then I just had to wait for the swelling to go down. Ice packs came in handy! 

Hope this helps a little! If I can answer any questions I will. 

Thanks so very much for replying. i am so nervous about the surgery as it’s being done under deep sedation. was that the case for you? i’m worried that it will be painful and that i am aware.

thanks for the update regarding the swelling and that you took two weeks to recover that’s handy to know.

i’ve been told i will lose my sight in my right eye as the tumour is touching my optic nerve.

im glad that you said the staff are lovely and helpful. 

do you still go for checks now ? how are you doing now?

thanks for all your help.

I see, my tumor is very close to the optic nerve, but not touching. 

I was put to sleep, yes. I didn't feel them doing it at all. I saw the same people in Liverpool who were there when I had my diagnosis. So it was nice to see the same faces again. 

I went in first thing in the morning. They give you a gown to wear and do all their checks. The anaesthetist came and spoke to me and answered any questions that I had. He was the one who put me to sleep, so it was nice to know who was going to be there. 

Then I walked into the operation room. I was quite shocked to see how many people were in the room. There was roughly 10. So don't be alarmed if you have the same. I laid down on the bed and they asked me to count backwards from 10. Didn't get past 5, then I woke up in a different room all together. 

I woke up without any pain. Just a big bandage on my eye. The pain killers do wear off after a while. I was given clean patches to wear, drops and a shield to wear at night. Was given something to eat and drink to make sure I wasn't sick. Then I could go home. I had a long journey home (6 hours) and all I wanted to do was sleep. Not that I was unconscious, just really really tired. 

Its really hard to describe the pain. It was an uncomfortable pain. Because you can't rub your eye to make it feel better, it's a bit frustrating.  Also because your eyes move together, looking around in general was difficult. 

I hope I am not making it worse for you. Just thought that the more you know, the less scary it is. I thought the operation was going to change the way my face looked, but once the swelling went down you wouldn't even know. 

I have had lots of check ups since. Some at my local hospital and some in Liverpool. My GP has also called to keep up to date with everything. 

My next appointment is in February to see how the impact of treatment. Lots of waiting around to give everything chance. 

Please feel free to ask any more questions!! 

Hello,   I can understand you being terrified, but dont.  really.  Moorfields and The Clatterbridge hospital in Liverppol for the Proton beam therapy are the best places in the world to get treated.  I had mine done, which is near my optic nerve, 2 years ago.  I can still see fine.  It is so scary when a doctor tells you you will loose your sight.   Ask to be put to sleep if you are worried.  I was put to sleep for the op.  The staff up in Liverpool are wonderful, you will be treated so well under the NHS.  You will stay in a hotel nearby, each day a taxi will come to collect you.  Amazing service, which was not on offer from any private medical insurance.  

Im just on this website as it has been two years now and when i try to look at a laptop screen it does go a bit weird, blury so I was looking for any advice on technology/inventions/devices to help with looking at a screen.   You will not loose your sight completely, please dont worry. the alternative would be to ignore it and possibly loose your eye. You dont want that.  

Best of luck to you, take a deep breath, you are in fantastic hands,  the doctors tell you the worst, but dont listen. And we are all here for you on this website.  

I had my surgery last year and had never had an anaesthetic ( i know that is spelt wrongly) the last thing i remember was the anaesthetist talking about football which i don't even like then i was waking up. I was able to fly back to Belfast that night although I had to be move up the operating schedule because of the flying.

One hint - when you put the eye shield on at night  do not tape the bottom of it -your eye might water at night and the tears can then escape rather than build up which is quite uncomfortable/. all i can say about my vision is that it is weird - light sensitive (go away low winter sun) and seems to go up and down – I am short sighted in my other eye - this had been my good eye. I do struggle with the computer screen at work but with my specs can watch TV no problem and don’t even need them to read.

For a few days after the surgery it might help to use your hand like a horse blinker if turning your head to look at something but this will soon pass

it was strange after the surgery - my head was itchy and i could not feel it to scratch it.

I had the optional biopsy when having the proton beam treatment – this is under local but is no different to being at the dentist and a nurse holds you r hand the whole time. This tends to impress people but really did not hurt not even aferwards

keep the site updated with your progress - hope it all goes well

thanks for all your updates and letting me know what you went through. i’m having my surgery this friday (21 jan). i’ve had to move out of my hole as my husband has tested positive for covid. it’s funny i was dreading the op but now i just want to have it done and not get it cancelled due to me catching covid.

i am worried about having deep sedation but they are the experts. Thanks for all your support i will let you all know how i get on.

good luck to with your progress and thanks again. x

Hello, I'm sorry to hear about your diagnosis, my dad has also been diagnosed with a Melanoma in his right eye this month at Moorfields hospital, he's also scheduled for PBT at Clatterbridge in Liverpool. His surgery at Moorfields is scheduled for February. He's yet to have full body scans to check for metastasis. I hope everything goes well for you. :) 

thanks for your kind words my surgery is now booked in for the 15 feb followed by appointments in liverpool. i hope your dad keeps ok, and his surgery goes well. i am too waiting for a full body scan to check if it has gone elsewhere. take care 

Hello thank you for the support. I just wanted to ask you if you have been given a date for your full body scan and roughly how long after your initial diagnosis will your scans be? 

People talk about full body scans here. Are these on offer in some areas. I just get ultrasounds on my liver.?