Losing an eye doesn't stop Lorraine raising disease's visability

Lorraine Wilby lost an eye due to a rare form of cancer, and now she is promoting awareness '¨of the condition. Catherine Scott reports.

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.

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Her dad had just recovered from bowel cancer, and the family had lots to celebrate. However 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 removed.

Lorraine is taking part in half marathons and 10ks to raise awareness of eye cancerLorraine is taking part in half marathons and 10ks to raise awareness of eye cancer
Lorraine is taking part in half marathons and 10ks to raise awareness of eye cancer

“Even now, 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.”

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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.

Lorraine's eye cancerLorraine's eye cancer
Lorraine's eye cancer

“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,” says Lorraine. “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.”

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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.

“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 started driving again after about four weeks. I gradually got better but I’m still avoiding driving in the dark.”

Determined not to let her experience stand in her way, Lorraine completed the Wakefield 10K on April 2.

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She is now preparing for the Rock ‘n’ 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. 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.

“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.”

She’s now become dedicated to raising awareness of ocular melanoma. “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.

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“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. 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.”