Empowering voices: A public member's story in the fight against Mouth Cancer

For Mouth Cancer Action Month, Paul Hellyer, who is a Patient and Public Involvement and Engagement (PPIE) member for the King’s Clinical Research Facility (CRF), tells the story of his late father-in-law. Paul lives in Sussex by the sea and is a retired dentist and clinical teacher. He spends his time beach-combing and aspiring to be a writer.

Dave was a lovely man, very gentle but not an easy man to chat to. He had little small talk and didn’t express his emotions very easily. During World War 2, he had been a captain in the army and there met his future wife, Amy, a nurse.

Dave and Amy had 3 children, Joan and Joyce, born in the late 40’s and some years later, Mike came along. Joan, in her teenage years, was diagnosed as paranoid schizophrenic, frequently hearing voices telling her to harm her father with a carving knife or push him through a window. When I was dating Joyce, Joan was already in a secure mental hospital. Joyce also had medical problems, with chronic auto-immune diseases, and died in her fifties. Mike died in his forties from pulmonary fibrosis. Joan remained institutionalised for the rest of her life.

Dave outlived his wife and 2 of his children. Only Joan survived him. He never spoke about the traumas of bringing up the children and the irony of being left in the world with the one child who had wanted to harm him. In his lonely old age, in his eighties, I used to visit him, and we would have a pub lunch and a short walk in the countryside once or twice a year.

One time, supping his pint, he spoke about more personal things.

‘I went to the dentist last week,’ he said.

‘Oh yes?’ I replied.

‘He’s found a lump on my gum, just down here,’ and he pointed to his chin, near the corner of his mouth. ‘I didn’t know it was there because it doesn’t hurt at all.’

‘It’s good he spotted it,’ I said.

‘I didn’t realise dentists looked at other things other than your teeth,’ he said, ‘so he’s referred me to the hospital.’

‘Are you worried?’

‘Not really, it doesn’t hurt, so it can’t be much.’

A few weeks later, he phoned me to say he was going into hospital for an operation. The lump was mouth cancer. The operation to remove the tumour and place a bone graft was successful but probably due to his age, he never really recovered physically from the procedure, and he died in hospital a couple of months later.

Dave had none of the risk factors for mouth cancer – he never smoked, and his alcohol intake was limited to when I bought the drinks at our catch-ups. However, he went regularly for dental check-ups and had a good dentist, astute enough to recognise some soft tissue abnormality. 

Mouth cancer in its early stages is usually painless and therefore unrecognised until someone, usually the dentist, looks in the mouth. In its later stages, mouth cancer can be painful as the growth presses on nerves. It is then difficult to treat, frequently involving radical facial surgery.

The message of Dave’s life story? There are some things in life you can’t control – he simply stoically carried on, watching his wife and children slowly disintegrate and die before him – but there are some things you can control, and looking after yourself is one of them.

One of the ways of looking after yourself, whatever your age, is to go to the dentist regularly so that your cheeks and gums and tongue can be checked for early signs of mouth cancer.

To read more about Mouth Cancer Action Month, visit: Mouth Cancer Action Month | Home | Oral Health Foundation (dentalhealth.org)

To learn more about PPIE at King’s CRF, please visit: For patients and public (nihr.ac.uk)