My cancer, an aggressive tumour on the salivary glands, was diagnosed in early 2015. I’d first noticed the lump the previous summer, but tests proved inconclusive. It took a deep-tissue biopsy in January to confirm that it was cancerous. Because of where it was – and because it had been there for about 18 months – there was a good chance the cancer would be embedded in the nerves. The surgeon said he might need to cut those to remove the lump, in effect paralysing that side of my face. He wouldn’t know until I was under the knife.
I didn’t really understand the impact of this. From the outset, I wasn’t interested in my prognosis, because it didn’t help me cope with my illness; trying to imagine life without facial movement was pointless. When I woke up, after a five-hour operation, I was told they’d had to sever those nerves to root out the entire tumour. I couldn’t move the right side of my face or make any facial gestures, and could open my mouth just wide enough to eat a piece of toast.
It’s only when you can’t smile that you realise how central it is to nonverbal communication. Soon after coming out of hospital, I passed someone in the chemist and did that whole “after you” pantomime, giving her a little smile. Except it wasn’t a real smile – it was a sort of one-sided grimace. She gave me a confused and slightly mistrusting look.
I asked my consultant how I could get my smile back. I’m a project manager for an IT company, and I perform in a band, so nonverbal communication is really important for me. Plus I have a 10-year-old daughter, Mia. “How are you going to get a girlfriend if you can’t smile?” was her burning question. I was told it wasn’t an option yet; the remaining nerves were being blasted by radiotherapy and there was a lot of scar tissue. I had my treatment and saw a speech therapist about facial physiotherapy. She referred me to another hospital, which specialises in facial palsies such as mine.
My kind of facial paralysis isn’t temporary, like Bell’s palsy – this situation was for ever, unless I went for it. So, in November 2016, I had a 14-hour operation. It was a complicated procedure, but I was determined to come out smiling. The surgeons took a nerve from my thigh and attached it to the cut nerves in my face, connecting them to my jugular vein. They put a deep layer of fat on top of the affected area, which kept the nerves warm and helped the blood supply from the jugular. After the operation, I kept haemorrhaging. They used leeches to control the bleeding. I lay in bed, covered in leeches, watching Trump win the election and thinking life was pretty bad. The next morning they operated again to stop the bleeding.
I knew the lump would look ghastly, then settle down, but I cried as hard as I’d ever cried after seeing myself in the mirror. It looked like a massive tumour. I’d told Mia I was going to hospital to restore my smile, and that it wouldn’t come back straight away. But this was awful. When I got home, she sat on my right, but asked to swap because she couldn’t cope with how I looked.
A year and a half on, I still can’t smile. My doctors originally said it could take up to two years to see movement. Now they say it might take up to three. Of course I miss smiling with Mia, but there’s a level of communication with someone intimate that is intuitive – we hug and laugh a lot, and she knows when I’m smiling inside. She’ll sometimes say she wished this had never happened, but our relationship is probably stronger than ever. She’s shown empathy and intelligence, and understands that there’s no such thing as normal or weird – just different.
Now I choose my words carefully, talk more slowly and use more eye contact. It’s interesting to see how other people cope when they meet me. I think there’s a fear – of looking at me and not offending me. Everything I say is delivered with the same face, so you have to really listen to the words to work out what I’m saying.
While I’m waiting to see if the nerves start working again, I’d like an operation to help my face look more symmetrical. But I’m pragmatic; I’m alive, back at work, recording and performing my music, and raising awareness of facial cancers for Cancer Research UK. And, to Mia’s delight, I’ve got a girlfriend. She didn’t know me before all this happened. It’s good to know she wants me as I am.