Louise’s Story

Life was good. We were happy, loved each other very much and were at a point in our lives when everything was going well. Peter had a good job and I am a nurse.

I remember Easter 2025 we went away as a family for a break in Norfolk with my brother, his family and my Mom and Dad. Peter was fit and well he had a slight redness in his eye but that would come and go nothing I worried about, but I do remember my Mom saying to him that he should pop to the chemist to see if they could recommend anything for it. But next day it would be less red and it wasn’t uncomfortable so he didn’t do anything. We returned home on the 19th April.

The next thing I remember was the following weekend on the Friday evening saying to Peter that his eye looked sore again. I don’t know why but I asked him how his sight was.

His answer shocked me as he said his eyesight was strange and he couldn’t see properly through it. I said well tomorrow we will go straight to the eye hospital and get it looked at. Peters reply was that he wouldn’t go tomorrow as Villa were playing an important match and he would go the following day. Ive been a nurse for 35yrs and have to admit that I know very little about eyes or eye health so had no clue as to what to expect.

We went to the local eye hospital on the Sunday and that was when our lives changed forever.

After lots of tests Peter was told he had a large tumour in his eye and had to return the following day for more tests. I remember going back home afterwards and Peter sat in the garden and cried. I found this so hard and didn’t really know what to say to him as I had no knowledge about tumours in the eye and so couldn’t reassure him and I felt so frightened and I didn’t know how to make things any better.

We returned the next day and the concerns were clarified and he was referred to a specialist hospital miles away from home. We were going on holiday in 12 days to Gran Canaria and I remember asking the doctor what we should do. Should we go or cancel.

We didn’t know what to do about the holiday and i I remember saying to Peter its your decision I will do whatever you want to do. He decided he wanted to go which really worried me as I was worried incase anything happened while we were on holiday. I rang the specialist Hospital and asked to speak to the Ocular Melanoma team and as they had yet to see him they said they couldn’t advise us. I also contacted our travel insurance company and they said they wouldn’t cover him as it was an undiagnosed condition. They gave me a list of companies that cover people with medical conditions and thankfully I managed to get insurance cover which we had to pay quite a bit extra for but insurance is so important and I was worried just incase he had a problem while we were there.

We went on holiday and had a lovely time although not like our normal holidays as we were anxious it gave us a good time together and we talked a lot about his eye and how we felt. I’m so very glad that we went as it was the last time we did something nice together. Even though it really worried me.

The day after we got back which happened to be my birthday I was driving to work and Peter called to say the specialist hospital had been in touch and he had an appointment the following day again Peter cried on the phone as he was so worried about it he really didn’t want to go, although he knew he needed to. (Peter wasn’t normally someone who would cry) I remember saying to him that I was glad the appointment had finally come and it was like a birthday present as he needed to be seen ASAP.

So the following day we travelled many miles to see the specialist consultant and he was told because of the size of his tumour he needed to have his eye removed. This was the worst outcome for Peter and it was what he most dreaded. He was devastated. I wanted to cry but felt I had to remain strong to support him. Peter was a very proud man and I don’t think he ever came to terms with loosing his eye despite being told he could have a new eye made and that many people would never notice.

Peter went from being fit and healthy to being diagnosed with cancer and facing the loss of his eye within weeks. Then, just before his surgery, an ultrasound revealed something concerning on his liver.

An MRI was arranged, and within days Peter developed severe back pain and bloating. He was taken to A&E, where his symptoms were initially thought to be gallstones. His blood tests were normal, and we hoped this was unrelated to his cancer.

The following Monday, we received the devastating news that the cancer had spread to his liver and spine.

Peter became very poorly, very quickly, and sadly never received treatment. He passed away in hospital on 18th July, with me by his side.

As a nurse of 35 years, I had never heard of this type of cancer. Neither had most of the people we spoke to. That was one of the hardest parts of this experience, the shock of being diagnosed with something so rare and unfamiliar, and how quickly it changed our lives.

A year on, I am still learning to live with the loss. I share Peter’s story to raise awareness of this devastating cancer and to make sure that people understand that rare cancers can have an enormous impact on patients and their families.

Support, OMUK and my fundraising event

I was very lucky to find Ocular Melanoma Uk on line and looked at the website. I saw that I could ask for a session with a psychologist as a bereaved person. I found the sessions with Laura so helpful.

I found it useful to talk to someone who understood the disease and understood how it effects people physically and emotionally. Laura was very patient and compassionate, and I felt safe talking to her particularly about things that were so personal and I don’t really speak to others about.

I am so grateful to her for listening to me and giving me ideas of how to relax when I am not sleeping well. I found the sessions invaluable

Because I was so grateful for the help I had from Ocular Melanoma Uk I decided that I wanted to arrange a fundraiser.

My initial idea was to cover the money that would have been used by my appointments with Laura but I had no idea how I was going to get support and donations to be able to do this.

However by some miracle and by so much kindness from friends and family I was able to raise £5100 by having a coffee and cake afternoon at my house. I had an incredible raffle with unbelievable donations of prizes, enormous tombola cake sales, plant sales.

I also decided this was a great opportunity to raise awareness of the condition and I did a large display board containing lots of information about symptoms etc. I really hope that this money is used to support other people who are affected by this awful disease.