Patient Stories

Belinda Gilfoyle – a slow recovery and learning to stay positive

Searing pain reoccurs

I was lying in bed one night when it happened again – that searing pain that came from nowhere and felt like someone was sticking a knitting needle into my ear.

Oh, pharmacy no, please, I groaned. It had been happening for months.

We moved back to the UK. Finally, I saw a maxillofacial consultant but he just gave me drugs for nerve pain. Even when I saw my dentist again, he just thought I was grinding my jaw.

I was busy with life living in Marbella at the time and being mum to my three children Georgia, now 24, Nadia, 17 and Oliver, 10. But months passed and every few days the pain was there. I told my GP many times, even my dentist. They all thought it was nothing.

I’d always been outgoing and loved life. I’d travelled, lived abroad, worked as a model, been a champion Latin dancer and had always been confident. But now I felt anxious all the time. Some nights when the pain came, I’d punch myself in the side of the face – it was awful. Then one day, five years after the pain had started, I found a lump in my neck. I was so tired of being fobbed off, I went private and had a biopsy taken.

Seven days later I returned for the results.

Diagnosis and treatment options were brutal – it was ACC

My husband Carl held my hand. I heard the consultant’s words but only some of them rang in my head: Cancer… rarest form…nothing we can do…

He explained. I had a rare form of head and neck cancer called adenoid cystic carcinoma arising from a small salivary gland located in the back of my tongue. It was slow growing – which is why, despite my pain, it had been missed for so many years. I took a deep breath. ‘How long do I have?’ I managed. ‘A year to 18 months,’ he replied. He explained chemotherapy and radiotherapy wouldn’t work on this cancer. Surgery was not an option as he said it would ‘mutilate’ me.

Immediately my children’s faces sprung up before me. I thought: How can I tell them this? How will they manage? And then finally I broke down. How had this happened? Carl held me tight. Days passed. The doctors agreed to try chemotherapy after all. They weren’t hopeful but I tried to be.

Then one day Carl came home smiling. He’d called a hospital called The Royal Marsden. It was a centre of excellence for head and neck cancer treatment.

They were willing to see me. Days later we saw Professor Nutting who explained that the only potentially curative treatment would be surgery, followed by radiotherapy. A few days later I saw surgeon Peter Rhys Evans who, after careful examination said simply: ‘We would be happy to operate.’ I felt overjoyed.

Surgery treatment akin to Iron Man

After being told there was nothing anyone could do, I had a chance. But it would come at a cost: They would literally have to open my face like the Iron Man and drill down through my teeth and jaw to get to my cancer which was hidden deep beneath my tongue.

I would be scared. I would possibly never swallow again. I might never eat solid food again. My speech might be permanently damaged. But only one sentence reeled in my head: I’m a mother. I want to live. A few weeks later, I kissed my children goodbye and Carl took me to hospital. I was given an anaesthetic and everything went black. When I came to, I was in intensive care. I had a tracheostomy and couldn’t speak or swallow. They’d taken part of my tongue and replaced it with muscle from my thigh. I’d been in theatre for 15 hours. But they’d got my tumour plus some infected lymph nodes.

It was over.

Intensive care to long road to recovery

Carl was there at my side, as he always was. ‘You were so brave,’ he told me.

Later, I gestured for a mirror. When I saw my reflection, I gasped. I was swollen from the bruising from the operation. A scar snaked down under my chin, past my neck and zig-zagged around to my other ear.

A nurse came over. I showed her an old photo of me on my phone. I used to be pretty I wrote on the whiteboard they’d given me to communicate. ‘You are pretty,’ she said. Tears rolled down my face.

Later my children and other family members visited. I wrote jokes to them on my whiteboard and, as the hours passed, I realised right now my looks didn’t matter. I was alive.

For five weeks I remained in hospital: first learning to breathe through my tracheostomy, then having speech and language therapy. When I came home, I still had a feeding tube in my stomach. But one day my three-year-old grandson accidentally pulled the tube out! I made a decision. ‘Maybe it’s fate,’ I said.

So I got myself a juicer and started making my own super-food smoothies. At first, I could barely move my tongue to get the food down. But as the days passed, I managed a bit, then some more, then some mashed potato.

A new life, living it to the full

Meanwhile, I was practising speaking all the time. And soon, as I looked into the mirror, the scar was barely visible anymore. Now, two years on from my operation, I’ve found out there are some cancer cells in my lungs. There is nothing they can do. But my cancer is a slow-growing one. I’m staying positive and hope there might be some drug that may help me one day. New discoveries are being made all the time.

I’ve had to give up work. But I focus on enjoying every moment with my family.

I am telling my story to raise awareness for people fighting head and neck cancer. So many other well-known cancers are talked about but mine was missed for years because it was so rare. Yet now, head and neck cancers make up eight percent of all cancers. We need to talk about it.

If my story can help save another person, then I will be happy.

Oracle funded research into ACC

Oracle is proud to be funding an project at the Institute of Cancer Research looking into new therapeutic options for ACC.

We have also agreed to fund a second project taking place at Brunel University London, also focused on improving survival of patients with ACC. See New treatment options for Adenoid Cystic Carcinoma.