Coping with changes in diet

Spring 2011

John McGuiness, who was diagnosed with mouth cancer two years ago, says having access to a dietitian was crucial to his recovery.

Around Christmas 2008, John, who is now 58, discovered what he thought was a mouth ulcer on his tongue. A biopsy later revealed that the little ulcer was mouth cancer|.

John had surgery to remove a piece of his tongue, some teeth and lymph nodes. This was followed by seven weeks of radiotherapy.

‘I had already lost weight before treatment, so my Macmillan head and neck clinical nurse specialist (CNS) referred me to a dietitian. I saw the dietitian before surgery because the cancer was very painful and I couldn’t eat terribly well. The dietitian recommended foods high in protein. She also suggested I try eating porridge. I had never had porridge before my diagnosis.’ John says the support from his CNS was crucial.

This wasn’t the first time John had been diagnosed with cancer either. In 1985, he was treated for early stage Hodgkin’s|. He says there was nobody to help him manage his diet then. ‘The treatment I had was successful, but I lost about four stone.’

Treatment

‘After surgery, I wasn’t able to do anything. I was fed via a drip while in hospital for 10 days. The dietitian was with me every day to make sure I was given enough supplements. They were always available to talk to my wife and family, and gave me the Macmillan recipe booklet| and other publications.’ 

Two weeks after surgery, John began radiotherapy. He says dietary needs became really important at this stage. John describes his mouth as feeling ‘sunburnt’ following the radiotherapy.

Adapting

For the next nine months the soft tissue in his mouth was very painful, but John got through it with support and help of his healthcare team.

'I felt a bit sorry for myself, but that soon passed. My main concern was getting better’

John McGuiness

‘Once I started to get stronger and could go out to restaurants, it was a difficult experience because of the things I couldn’t eat. It made me feel a bit depressed for a while when I was out with company. I felt a bit sorry for myself, but that soon passed. My main concern was getting better.’

‘It took me a while to adapt to my new regime, but I manage my diet very well now. I can eat steak if I cut it up into small pieces and have it with gravy.’

‘I was always a big lover of sweet stuff like trifle, and I can eat that now. Radiotherapy plays havoc with your taste buds, but normal taste starts to recover after a year.’

I know I can always call my CNS or the dietitian – they are always at the end of the phone.

John says his symptoms will improve over time and he now has a regime to follow with the help of his wife.

‘I’m happy in terms of what I’m able to eat – I probably have a better diet now than I did when I was diagnosed. I’m not eating as much rubbish. I count myself very lucky.’

Related information

Macmillan has information about diet and cancer|, including recipes|.

We also have information about head and neck cancer|.

You can order booklets containing this information at be.macmillan.org.uk|