When I was 12, wearing glasses was the height of cool. My older sister Lauren had just got a pair, and I wanted to be just like her, so I begged my mum for weeks on end to take me to the opticians to get my eyes checked. My vision was funny, I said, so maybe I needed glasses too.
Ironically, there was a problem with my eyes, though I’d never clocked that things weren’t totally normal. For as long as I could remember there was this big black “floater” in my vision in my right eye. Because it had always been there, I’d thought that other people must have one as well.
How wrong I was. When the optician could see that there was a mass in my eye, he looked confused and said I needed to go to my local hospital for checks. It was cataracts, he thought, but given how young I was that was very suspicious.
When my local hospital in Horsham couldn’t get to the bottom of it either, I was referred to St Bart’s in London. My doctors said there was no cause for worry though, so I was excited – a day off school in the big city sounded like so much fun. Even as I sat in the ward, getting my eyes poked at and scanned, and in the waiting room afterwards, I didn’t worry too much.
Then the consultant, Mr Hungerford, popped his head in as I was tucking into a supermarket meal deal. “Olivia Deane?” We all packed into the dark room, me sat down with my mum and nanna behind me.
Then that’s when my world changed. “I’m really sorry to inform you,” Mr Hungerford said, “but you have a form of cancer called retinoblastoma in your right eye.” That familiar floater was a tumour, it turned out, and it was growing aggressively. I’d need to start chemotherapy at Great Ormond Street Hospital in a fortnight.
My mum and nanna burst into tears, but I just sat there in shock. “Am I going to die?” I asked eventually, once it had started to sink in that I had cancer. “The worst case scenario would be that you lose your eye,” said Mr Hungerford, “but we’re going to do our best to stop that from happening”.
To this day I’m the oldest person ever to be diagnosed with retinoblastoma in Britain, a form of cancer that’s usually found in children under four – so in reality, no one knew what was going to happen. Specsavers saved my life, I know now. Had I not gone for that checkup I would have died.
But I never entertained the thought that losing my eye could be possible because no one around me let me believe that things would get so bad. That’s why I dragged myself through chemotherapy every three weeks. I remember, aged 12, standing in the mirror with a Hickman line under my armpit about to have my first infusion, and realising that I was going to be the “sick kid” at school, and feeling terrified.
The worst thing in the world was losing my hair. I knew it was going to happen. It came out of my short brown bob in clumps, when I brushed or washed it. The kids at school were horrible, calling me a boy and making fun of my bald patches. I was gifted a beautiful wig from the Little Princess Trust that saved my self-esteem, and that my mum could never have afforded herself.
What I didn’t expect though was to lose hair from all over my body – my armpits, legs, eyebrows and eyelashes – just as all of my friends were shaving for the first time. I’d started my period just a few months before my diagnosis, and that stopped too. Just as everyone else was starting to grow up, I felt like I’d been held back in childhood.
It didn’t help that, given most retinoblastoma patients are about 18 months old, there was no one on my ward to bond with and talk to who understood what that experience was like. All of the other patients were babies.
Unfortunately, none of the treatments fully worked. In a desperate bid to save my eye, I was the eleventh person in the world to be offered chemotherapy intravenously, through a transfusion into my groin under general anaesthetic. We were all so relieved when that, in the end, froze my tumour meaning I was in remission.
My hair started to grow back, into a couple of fuzzy inches on my scalp, and I felt healthier and stronger by the day. Then just before Christmas came the call from Royal London Hospital that we had never expected. My cancer was growing again. I saw my mum on the phone, looking shocked and pale, and asked what was wrong. “I’m so sorry, Liv,” she said. “They’re going to have to remove your eye.”
What I felt wasn’t just shock, but anger – I had gone through so much to save my eye and always fully believed that it would work. Now, it seemed to mean nothing. I was going to be disfigured, I thought, with a horrible, scary crater in my face. What would kids at school think? Later they would call me a cyclops, so I was right about what was coming.
I had my surgery on December 30 when I was 14 years old, and spent New Year’s Eve in hospital. Waking up after the removal was horrific. I remember howling, and it hurt to move my remaining eye around, so I desperately tried to look ahead. At first I refused to look at myself in the mirror, but one of the nurses reassured me that it wouldn’t be as bad as I thought.
I am so grateful to her, because she was right. I summoned the courage to look at myself in a little handheld mirror, and though my eye was missing, they’d put a conformer in to keep the wound safe and clean, and it didn’t look so scary after all.
The first thing my mum said when I woke up was that I looked beautiful. She was my guiding light through all of this. Whenever I was at home I’d sleep in her bed. Balancing school and my illness was hard and she always let me know that I should put my health first, and that exams could come later. She gave up her job to be there for me, and would fast with me before all of my operations. It was what any mum would do, she still says.
Even after my eye was removed, my cancer didn’t fully go away. It took another round of chemotherapy for my cancer to fully go into remission. It was truly a miracle that I survived. At one point I was too weak for a blood infusion and so resigned to dying that the hospital almost had to call social services to force me to come in for treatment. My mum called all my family to the ward at our local hospital in east Surrey to say their goodbyes.
I never got to be a normal teenager, but my illness taught me that there is more to life than the little inconveniences and dramas we all get so wrapped up in. I tried to move on as best I could, helped massively by a beautiful prosthetic eye designed for me at Moorfields Eye Hospital by an artist who sat with me for hours, painting flecks of gold into my brown iris, adding veins, and making sure it looked as realistic as possible.
Today, with that prosthetic in, most people just think I have a lazy eye. When I started dating I’d always tell guys that I had a prosthetic eye, because I felt like I was hiding a secret from them otherwise. Now I know that I don’t owe anyone an explanation for how I look.
But at the same time, I don’t feel like the “real me” when I wear my prosthetic. I wear it out and about most days as it helps to keep my eye socket in its natural shape, but I feel much more beautiful without it in. Three years ago, while I was working as a cleaner for my sister’s company, I went public about my eye loss story, making an Instagram post without my prosthetic. It was noticed by the model Katie Piper, who herself was blinded in one eye following an acid attack and who helped me get signed to a modelling agency.
Now I’ve posed without my prosthetic in for Vogue magazine. My dream is that a little girl with a missing eye, maybe because of retinoblastoma, sees me and knows that she’s beautiful, just like my mum always told me.
That first Instagram post was also seen by Max, a childhood friend and, today, my partner and the father of my two-year-old son. He asked me to take out my eye in front of him early on in our relationship because he wanted to see the real me.
My son knows about my eye too – he’ll hand it to me or put it on my eyelid while I’m lying down. I’d like more children with Max in future, but for now, my focus is on raising a kind child, who knows that his mum is a bit different and will always treat other people who might not fit in with care and support.
As told to Lauren Shirreff
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