Finding Support

1. Your medical team

Your medical team can answer any questions you have about your condition and will help you adapt to its impact on your life. Your care team will give you the best details to contact them.

2. Cancer charity helplines

Cancer charity helplines will give you some space to talk about your cancer diagnosis candidly.

3. Specialist psychologists

A clinical health psychologist is trained to use a range of techniques to help you understand difficulties related to your physical health and find a way forward. Your health team can refer you to a specialist if you ask.

You could also ask to be referred to a specialist psychologist — a person who is trained to provide help for people with cancer. If you are receiving treatment in Liverpool, you can access a specialist psychologist through your specialist ocular oncology centre.

If you are receiving treatment at another centre, you can get funded sessions with a specialist psychologist through Ocular Melanoma UK. You can learn more on our Psychological Support page. These services are often available remotely by telephone or online.

“My vision was getting worse, and every day I was checking to see how much I could see.

I would look in the mirror every morning, and it was a constant reminder of the cancer. I would then worry about the scans. I would wake in the night having these horrid thoughts, and I couldn’t seem to stop them.

I felt irritable a lot of the time, and my wife commented that I was ‘snappy’ and had ‘changed’. She suggested I speak to someone, but I thought, ‘No, how is talking to someone going to change anything? No one can take away my fear of the cancer coming back.’

When I went to my clinic appointment for my liver scans, the consultant asked me how I was, and I couldn’t speak. I just froze. My wife said I’d been finding things hard. The consultant suggested that I speak to the psychologist in person that day or on the telephone. I said yes to a call because we were in a hurry to get the train.

After a few sessions with the psychologist, I started to feel better. She helped me find ways of coping with the worry. My mood, sleep and appetite improved. I still get worried, but I’m getting on with my life. Worrying is so exhausting!”

~ Philip, who had proton beam radiotherapy

4. Your employer

If you are still working, you may have access to help through your workplace.

It is recommended that you first talk to your direct line manager.

You could also contact the HR department at work. They will be able to put you in touch with any support they have available, including occupational health and occupational therapists.

The schemes below may also be available to you, although eligibility criteria may vary.

5. Eye Clinic Liaison Officers (ECLO)

Eye Clinic Liaison Officers (ECLOs) have a lot of knowledge of eye conditions, including welfare benefits you may be entitled to and returning to work.

ECLOs offer individual care and advice to people with ocular melanomas, including talking to you about your worries and how to manage the different ways in which your cancer affects your life.

You can learn more about ECLOs and what they can do for you on the RNIB website.

6. Resources to learn more about living with ocular melanomas

Ocular Melanoma UK’s website has more resources on ocular melanomas, treatments, and the research being done to understand them better.

A Singular View, a book by Frank Brady, is also an excellent resource for those who have lost sight in one eye, as well as anyone who supports someone with a condition that affects their eyesight. You can buy yourself a copy from The Partially Sighted Society’s website or on Amazon. 

You can also learn how clinicians make treatment decisions for people with uveal melanoma by reading the guidelines on treating uveal melanoma, which can be found on Melanoma Focus’s website, linked here. 

If you have squamous cell carcinoma and require more support, speak to your care team for further information.