Melonoma of the choroid in the left eye.

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Hello all.. 

Recently diagnosed and have had the clips fitted last month. Going up to clatterbridge for pbt this week, am struggling tbh with the diagnosis and what the future holds.. Does anyone have any advice on how to get used to this. Does it happen over time. Just feeling like I've been dropped into a world i don't understand.....

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I've had a different type of cancer to you but I think that everyone will agree that no matter what type you have the worries and anxieties are broadly the same.

    I don't think that you ever "get used to this" but rather you have to find coping techniques that work for you. When I was first diagnosed I immersed myself in my hobbies so that I didn't have time to think about the 'what ifs' as I was too busy enjoying myself. Do you have any pastimes or hobbies?

    Lots of people find mindfulness really helpful and, if this is something that interests you, clicking here will take you more information.

    I would also recommend that you just concentrate on dealing with what is happening now and try not to spend time wondering what will happen in the future, possibly easier said than done, but it does help.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    All the best with your appointment this week

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • not the best time of year to have to deaL with this is it?

    the good thing is that the reaction to the PBT (Blistering of the eye lid) does not kick in for a few weeks so you will not have to worry about this at Christmas  - not that there is anything to worry about - just extremely itchy).

    just don't forget about the eye drops in al the fuss bout Christmas and dont forget you have just had medical treatment  so you couldn't possibly do all those extra dishes - could you?

    seriously though   i can only advise to take it day by day.

    Are you having the biop[sy done/ It might give you some peace of mind. Your eyesight may or may not change over time - your hospital should have advised on this. Again make sure you take all the liver scans offered  - my follow-up on this has been much better than the eye follow-up. They can be reassuring 

  • Hello Lou23 I too have be diagnosed with the same type of cancer at the end of September this year. In that short time I have had the markers put in and had my proton treatment in Liverpool. This Friday will be my 28 th day on eye drops. My eye still sore but nothing like i was was expecting it. I have had CT scan and MRI and all good. I have a follow up with Moorfield London in Jan. I have good and bad days. It's so hard to take in so I know how you feel. These people that work in Moorfields and Clattebridge are absolutely fantastic. They make you feel totally at ease. You will be fine. Please don't read too much on internet as there is alot of scare talk on it. I got told of by my Nurse in Moorfields for doing that lol. All the best. Merry Christmas x

  • Hello Lou

    I'm so so sorry to hear about your condition, it is totally understandable you are struggling but by reaching out and acknowledging this is a way forward to recovery. 

    I have walked your path and had a large choroidal melanoma near my optic nerve of which I had successful proton beam in October 2021 at Clatterbridge. I still have flashing, flickering and headaches at the moment  and I never imagined it would be such a long long journey. My vision is pretty good at the moment but probably will regress at some point and my eyelashes haven't returned but I had lots of problems with radiation burns. But hey... I'm still here and  no longer fear dying from this in the night and technically the cancer in my eye is now dead.

    On the other plus side I no longer cry when I get NHS letters that hit me like sledge hammer and were relentless in the early days. I can also cope with the constant TV ads on cancer which were difficult in the early days.To some extend I am now gradually learning to "park it" much better at the back of my head until hospital appointments and by far waiting for MRI screening results which takes many weeks is definately the worst! (last one was before Christmas and it took 5 weeks before I got my all clear liver results!) However, personally I will never feel totally safe from the fear of cancer  returning and I guess that is why people talk about  learning to live with the condition.

    I personally found these things helped me and may help you?:

    *Relaxation music,breathing and trying to meditate (Buddha principles certainly has made some sense to me and I attended some workshops as wanted some inner peace!!!! ) 

    *Mindfulness

    *Reiki (Yes I was sceptical but I do see beautiful colours in my eye and so much nicer than silver flashes.. It certainly helps my headaches.. I can now do this on myself and is helpful as i can now relax in the Mri tunnel!

    *More coffee  and cakes with friends and  making time for what I enjoy.

    *I now don't sweat on the small things as they  are so unimportant now, I see each day as an added blessing that I woke up and I  definately have more gratitude and patience! I think I am now a better person, or at least i like to think so!

    * Developing acceptance that life will never be the same but you will come out the other side!

    *I stumbled across  a really good article which really helped me and still does! Google "After the treatment finishes then what"  by Dr Peter Harvey

    NEVER NEVER EVER EVER GOOGLE YOUR CONDITION AS IT WILL REALLY FRIGHTEN YOU, ESPECIALLY STATISTICAL DATA as, you can't forget what you read and such articles are not specific to YOUR case, just listen to your consultants! This caused me untold emotional trauma when everything was so scary!

  • Thanks for your reply.. I was very lucky in not getting any blistering or soreness from the pbt. I have had the biopsy done a couple of days ago now and that was pretty hard to deal with. But I know ive made the right decision getting it done.. Just gotta take my mind off it all now while I wait for results. The stitches are soooo irritating though but I'm told these ones are dissolvable within 2 wks so yay to that... X

    Hope ur doing okay too. 

  • This article really helped me as I’m new to eye cancer.