What it’s like to lose an eye to melanoma

A small red spot on Jess Van Zeil’s eye had never concerned doctors when she was a child. But the spot remained throughout her teens, and at 19, during her first year of university, it grew and became raised. ‘I was told it could be cancer, but I didn’t need to stress,’ she recalls.

The first biopsy was benign, so Jess got on with her life and study – a Bachelor of Food and Nutrition Sciences at Deakin University. But in June 2014, dark spots that looked like moles on the whites of her eyes appeared. ‘I ignored it because the past spot had been benign and I didn’t trust the doctor that I’d seen either,’ she says. Determined to carry on as normal, Jess booked an eight-month trip around the world. But just before her November 2014 departure date she was back in the doctor’s surgery for tests on the spots.

‘The doctor said he didn’t want me to go, but it was booked and paid for,’ Jess says and remembers being defiant – she wasn’t passing up the opportunity to go exploring. Eventually they agreed she’d have tests during her travels. Her father, who lives in South Africa, arranged a specialist appointment on her arrival.

Three days later she was having surgery and was diagnosed with ocular melanoma. ‘I saw an oncologist and they said I had to come home because Australian research on melanoma is some of the best in the world,’ she says.

In Australia, one in 14 men and one in 24 women will be diagnosed with melanoma sometime in their life, usually in their skin through ultra-violet (UV) radiation exposure. It’s also the most common cancer found in people aged between 15 and 29, but Jess’s ocular melanoma is extremely rare.

Just nine weeks into her trip, Jess was reluctantly back on home turf visiting the Royal Victorian Eye and Ear hospital. She then had another surgery and was given the all clear. However, the relief was short-lived. ‘I started getting more moles and it grew into the eyelid,’ she explains. According to the doctor it was time to do ‘something drastic’.

Doctors planned to remove her eye and the contents of the eye socket. Jess had done her own research and tried to negotiate. ‘I came in with a game plan, but the doctor said this was my only option if I wanted to be sitting here in five years. It was hard to come to terms with,’ she says.

She only had a month between the news and the surgery. During that time she accepted the fact that losing an eye was a small price to pay to stay alive. Jess recalls, ‘I started to think about being a little bit different and dealing with people looking at me funny. The big thing was always staying positive.’

But positivity didn’t pay the bills. Due to the volume of appointments and the stress, Jess wasn’t able to work. Fortunately her sister stepped in and helped her to raise $15 000 to cover out-of-pocket expenses and the eye patches she’d need post-surgery.

The surgery took place in October 2015 and now she’s back at university, completing her final year. But the return to academic life has been difficult. ‘Extended screen time was exhausting at first. I’d get home from uni and crawl into bed because I couldn’t look at anything,’ she explains. Despite facing more challenges than most undergraduates, Jess plans to go on and complete a masters in dietetics. ‘I had an option to save my life,’ Jess concludes. And she has every intention of making the most of it.