“Even though I’ve lost my sight, my vision is clearer than it's ever been”

13 April 2018

In December 2017, Lorraine Wilby was busy living life to the full.

The 53-year-old from Wakefield had decided to start putting her health first, taking up running, attending ‘fighting fit’ classes and completing her first Great North Run with her partner Stephen.

Her dad had just recovered from bowel cancer, and the family had lots to celebrate. Ending the year with exciting trips to Disneyland Paris and London for New Year’s Eve, Lorraine had every reason to feel positive about the future.

Nothing could have prepared her for the devastating news she was about to receive.

In January, Lorraine was diagnosed with ocular melanoma, a type of eye cancer, and by the end of the month she’d had her left eye completely removed.

“Even now, 12 weeks post-surgery, I’m still asking how you get cancer in your eye,” Lorraine says. “I’m just shell-shocked. Absolutely shell-shocked.”

Lorraine’s first warning sign was a severe pain which came on suddenly as she was finishing work as a night shift manager at Generator Power, Normanton, in early December.

“I couldn’t look up or down, but by the time I got home it had gone,” she explains. “It was a bit sore, but there was nothing I could put my finger on. Looking back now, I was forever cleaning my glasses. Something was obviously affecting my vision.”

It wasn’t until Lorraine arrived home from London that she decided there might be something wrong with her eye and that she should seek medical advice. After attending an appointment at her opticians, she was referred to SpaMedica eye hospital with a suspected cataract – a clouding of the lens of the eye that can lead to a loss of vision.

“The lady who saw me spent a long time looking at my eye, and then got someone else to look,” Lorraine recalls. “They both agreed it wasn’t a cataract. Then they called for a surgeon in the clinic to have a look. By that point I was a nervous wreck. I knew it was something serious.”

Lorraine was referred to the Royal Hallamshire Hospital in Sheffield, where tests concluded she had cancer. The tumour – which measured 23mm by 9mm – had grown aggressively and had caused the retina, a loose layer at the back of the eye, to become detached. This meant doctors had no option but to remove the eye completely.

“The team in Sheffield were fantastic,” Lorraine says. “There are only four specialist eye cancer units in the UK and Sheffield is one of them. I felt lucky to live close by. They are experts in the field, and I’m so grateful for the treatment I received.”

Lorraine has spent the last two months adjusting to only having vision in one eye. At first, she felt so vulnerable she didn’t leave the house, but slowly she has started to regain some sense of normality. Recently, she began a phased return to work on day shifts.

“Generator Power have been absolutely fantastic. Their support has really played a big part in my recovery,” Lorraine says. “I started by going to the shop around the corner. I did bump into people, but while I was wearing a patch they understood. Now I have a prosthetic eye, they don’t always understand and sometimes think I’m being rude. It took six weeks for me to feel comfortable in big crowds.

“I’m still not completely used to it. It was simple, everyday things that I struggled with the most. It never entered my head that I’d have a problem putting make-up on, but when I closed one eye to apply my eye-liner, I couldn’t see anything. It took a while to find a way around it.

“I started driving again after about four weeks. I thought if I didn’t do it soon enough, I’d never do it. I gradually got better but I’m still avoiding driving in the dark. If I don’t drive, that’s something else I’ve lost.”

Determined to not to let her experience with cancer stand in her way, Lorraine completed the Wakefield 10K on April 2 despite not being able to train. She is now stepping up the distance by preparing for the Rock and Roll Half Marathon in Liverpool on Sunday, May 20, and in Dublin on Sunday, August 12. She will complete a race every month with her partner Stephen until the Great North Run in September.

“I’d signed up to the Wakefield 10K last year to raise money for charity after my dad’s experience with bowel cancer,” Lorraine explains. “There was no way I wasn’t going to do it. It took an hour and a half but I started and I finished and that was what I wanted.

“I can’t wait to take part in the Rock and Roll races. There’s a band every mile and the atmosphere will be absolutely fantastic. Running and keeping fit gives me something to focus on, even more so now. I know that a healthy lifestyle and exercise can help you recover from cancer and might even help to keep it at bay. So I’m doing all I can to keep active.”

In contrast to malignant melanoma, a type of skin cancer, no link has been found between ocular melanoma and exposure to the sun. Following her diagnosis, Lorraine was tested and found to carry a hereditary mutation in a gene called BAP1, which causes an increased risk of eye cancer and a number of other cancer types including kidney and skin cancer. She will now require regular MRI scans to check if the cancer has spread. She says this is the most worrying part of everything she’s been through.

“If I understand things, I can deal with them. If I don’t, that’s when the panic and worry starts,” she explains. “Throughout my treatment I always asked lots of questions. But the fact is that they don’t know where the cancer might have gone. They class ocular melanoma as incurable. It can travel through the blood system and that means it can spread to the liver. If cancer is found in the liver, it’s not the best news.

“People don’t really understand. They think that now I’ve had my eye out, life can go back to normal. But I’ve got to keep going for scans every six months, and I’ll worry for two weeks beforehand, and for two weeks after, and then try to be happy for the other four months. I know I’m lucky in a way because I am being scanned, and a lot of people are walking about not knowing what’s going on, but I have had a couple of meltdowns.”

Lorraine has been wearing an ‘off the shelf’ prosthetic eye since surgery, but she is looking forward to being fitted with a bespoke prosthetic that has been moulded to fit her and hand-painted to match her remaining eye.

However, she says that every time she looks in the mirror she will be reminded of her cancer and what she’s lost.

She’s now become dedicated to raising awareness of ocular melanoma. Just 600 people in the UK are diagnosed with the disease every year, making it a very rare type of cancer 1.

Lorraine says, “When you lose your eye, it’s gone. You can’t get a false eye that sees. I know there are no ‘good’ cancers, but I think that if I’d had breast cancer I would have felt safer. I would have been able to go to lots of places for advice. It’s good that it’s not a well-known cancer, as that means fewer people are affected, but it’s frustrating for the patients that have got it. There isn’t as much research because not enough people get it, which means treatment is limited, and there aren’t as many support groups.

“There isn’t one person I’ve spoken to that has ever heard of anybody having eye cancer. I’m not considered partially sighted or disabled, and eye cancer isn’t something that’s listed by insurance companies, even though you have to declare it. I feel like someone needs to pick up the challenge and fight for more support and education. All opticians should be trained to know when a tumour is present. I’m disappointed that my tumour wasn’t picked up by my own optician.”

Lorraine adds: “I think everyone who has had cancer experiences the realisation that they don’t want to die. Losing my eye has reminded me I’ve got to do the best I can with my life. Now I take notice of things a bit more. I don’t take things for granted as much. Even though I’ve lost my sight, my vision is clearer than it’s ever been. I’m just trying to get some sort of structure and routine back into my life and then it will just be a case of living.”

Symptoms of eye cancer can include:

• shadows, flashes of light, or wiggly lines in your vision
• blurred vision
• a dark patch in your eye that’s getting bigger
• partial or total loss of vision
• bulging of one eye
• a lump on your eyelid or in your eye that’s increasing in size
• pain in or around your eye, although this is rare

These symptoms can also be caused by more minor eye conditions, so they’re not necessarily a sign of cancer. However, it’s important to get the symptoms checked by a doctor as soon as possible.1

More information and support for people with ocular melanoma can be found on the OcuMel UK website: www.ocumeluk.org.


1 https://www.nhs.uk/conditions/eye-cancer/

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