‘It’s a cancerous tumour in your sinus cavity,’ the consultant confirmed. ‘It has spread up behind your eye. We’ll need to start treatment straight away.’
My whole life, which had spread endlessly in front of me, suddenly seemed so fragile. ‘Whatever it takes,’ I nodded determinedly. ‘Let’s get it done.’
‘Of course the eye will need to be removed,’ he continued. Shock slammed into me, leaving me speechless. Not only did I have cancer but it was going to take my eye?
After the appointment, when I walked back to my car and googled ‘facial cancer’, I was met with my worst nightmares; people missing half a face, horrifically disfigured.
This was back in 2012, and I’ve come a long way since then. Although it felt like it then, I know now that I’m not the first person who has been left looking completely different because of an accident or illness and I won’t be the last.
That’s why Coronation Street’s latest storyline, where Ryan Connor is left with facial scars after an acid attack, is so important. It’s a story that needs to be told – and retold.
‘Once his facial injuries are revealed to him, it knocks it right out of him again,’ explains actor Josh Prescott. ‘The initial glances are heartbreaking. The first time he sees his face, he is thinking, “I am never going to have love in my life again. I am going to be the one that people look at in the street.”’
I remember those feelings – completely.
Before my diagnosis, life was good. I had two sons and although I had just been made redundant from my job, I felt life was going the way it was supposed to.
Then, in early 2012, I had what I thought was a blocked tear duct. My eye kept watering and it didn’t seem to be clearing up. After months of GP appointments and referrals, in April I was booked in for an MRI scan.
Days later, the hospital called, asking if I could go in straight away to discuss the results. ‘I’ve got a job interview,’ I explained, still convinced it wasn’t serious. ‘Could it wait?’
But the receptionist explained no, it couldn’t and I knew, as soon as I walked in and saw the consultant’s face, that it wasn’t good news. He looked… well, he didn’t look cheery. Straight away, he showed me a large dark mass on the scan. ‘I don’t know if it’s cancerous or not but it’s a large tumour,’ he explained.
After a biopsy, I was called in for another appointment. There were 14 people in the room when I was told it was an aggressive form of cancer. ‘Am I going to live?’ I’d asked – the way I’m sure everyone in that situation does. And they told me we needed to start treatment immediately.
Of course, when I’d told the doctors we should do whatever it takes, I’d had no idea it would mean removing my eye.
And as I sat in the car looking at the terrifying pictures of what might be, I had no idea how I’d survive this – physically or mentally.
‘You’ll just have to work it out as you go along,’ I told myself.
That was all I could do. The big picture was too terrifying to contemplate, so I took it a day at a time.
In early June, I had the operation to remove the tumour, my eye and all of the surrounding area. As soon as I woke up from the operation, I got up, staggered to the bathroom and gently unwrapped the bandages to see what was left of my face.
It was… overwhelming, to say the least. The reality was, quite literally, staring me right back at me. It was done.
But even then, there was a sense of relief. The doctor said the operation had gone as well as could be expected. They’d removed as much of the tumour as possible.
To ensure all trace of the cancer had gone, I had 30 sessions of radiotherapy and two cycles of chemotherapy, all of which left me ravaged for the next two years.
Devastatingly, my wound didn’t heal properly, and over the following years, I’d have a dozen more surgeries to try and close the hole and have something resembling an eye. They only left me with more scars.
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I wore an eye patch, but still, whenever I went out, I attracted points and stares. I didn’t mind when I heard the childish whispers that they’d just seen a pirate but it cut deep when I heard adults laughing or saw them nudging their friends.
I’d never imagined I’d be ‘that’ person, the one to attract double-takes but now I was, it was revealing, just how cruel people could be.
And just as hard to deal with were the people who heaped praise on me when they learnt what I’d been through. ‘Wow, you’re amazing,’ they’d say. ‘You’re so heroic.’ Their words made me feel like an imposter. I wasn’t brave, I’d just done what had to be done to save my life.
I didn’t want this attention – good or bad.
In order to help me cope, I started a blog, detailing my journey. Back then, there was little else out there on facial cancers and before long, I started to receive messages from other people with a similar diagnosis. People who could understand what I’d been through and some of whom I became extremely close to.
Two years after my original operation and six weeks after more surgery on my eye, I ran a marathon to raise money for The Royal Marsden, the hospital where I’d been treated. It was incredibly hard, but it proved I could still get out there.
Because I’d made a decision. I wasn’t going to see myself as a monster, I was going to be grateful that I still had my life.
So many of the people who contacted me sadly passed away when the cancer didn’t respond to treatment, or returned. I couldn’t waste the life that I’d been given.
Instead, I started working with charities like The Scar Free Foundation, who fund crucial medical research to understand more about scarring and how we can heal better and Changing Faces, who supports everyone with a visible difference – for Scar Free I even allowed myself to be photographed for the first time without my eye patch.
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I knew how isolating it felt, to have your life turned upside down by becoming disfigured, and I wanted to show people they weren’t alone.
Three years ago, an ex-girlfriend, Tamara, got in touch and said she’d seen what I had been through and wished that she’d been there to help me through it. When we got back together, it felt so natural and she couldn’t have been more supportive.
In fact, when we got married, she asked me not to wear my eye patch during the service. ‘I want to marry the real you,’ she told me. Those words meant so much, especially considering that like Ryan, I’d at first thought I’d struggle to find love again.
So now, I will be following Ryan’s storyline closely, hoping that they treat it with care and execute it correctly. Because I know how many people out there will be affected by it, who will be watching it feeling like they’re the only one. But they’re not.
Having a facial disfigurement is a torturous thing to happen. It strips away so much of who you think you are and changes what people think of you, until you’re just left with… you. The person you are inside. Yet, when you accept that person, you realise that anything is possible.
For more info, visit scarfree.org.uk
As told to Sarah Whiteley
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