Pete on the importance of sharing experiences

Wednesday 29 January 2020

Maggie's Oxford

When I finished treatment for head and neck cancer I wanted to give something back. I worked with Maggie's to bring back the Heads2gether support group.

I was diagnosed with tongue cancer in 2015. It was pretty devastating, especially because, as a DJ, my entire working life has depended on my ability to communicate. 

I was in treatment for just under a year, and the sooner I can forget about it the better, it really wasn’t much fun. 

Recovery was a real struggle

A head and neck cancer can be extremely difficult to get over. Because of my treatment, I couldn’t eat anything for six months and had to learn how to swallow again.

I also had a large scar that looked just like a zipper going all up my neck. In most cases, there can be a lot of psychological problems. 

Being with others really helped

During my treatment I discovered Maggie’s. It’s an amazing resource and just what cancer patients and their families need.

When I finished my treatment, I joined the Where Now? Support Beyond Treatment course. It was a real eye-opener for me. It taught me the importance of people getting together with others who have been through very similar things. 

The free exchange of experiences is an enormous relief as it helps each of us to realise not only that our issues are not unique, but also how to help resolve them. 

Because Where Now? is for all types of cancer, I asked Maggie’s if we could start a head and neck group.

Reforming Heads2gether

Claire, the Centre Head told me about a virtually dormant group called Heads2gether, and she put me in touch with Ray, one of the people who had been the driving force behind the group. I talked to him and we decided to restart the group at Maggie’s Oxford in 2017. 

Everyone is welcome at our group, all ages, men and women, but it is important that they have finished treatment.

I encourage people in my group to talk to each other. It’s very, very important to talk to people who have been through the same thing as you. 

Learning from experts is a real bonus

When you’re in hospital, if you have a problem, you speak up and it’s solved. But when you are discharged there’s nobody who can answer your questions and a lot of people say it’s like falling off the edge of a cliff.

So we will also get clinicians to come to our group; an oncologist, nutritionist, speech therapist, physiotherapist. We always have somebody. 

It's powerful to share

The Heads2gether meetings are about exchanging information and ideas.

Head and neck can affect your looks, your speech, how you eat. There are so many possible complications. It can be very, very hard to cope and we can help alleviate this and make people believe in themselves and that they can cope with what’s happening to them.

The group has improved lives

Re‐starting the Oxford Heads2gether group at Maggie’s was one of the best things that ever happened.

We’ve had people come to the group and say their whole life has changed because of the support group. And that is really my aim.

There are more and more head and neck cancers being diagnosed, in younger people too. Maggie’s and Heads2gether provide vital support to these people and today it has become the driving force in my life.

I want to see head and neck cancer support groups all over the country. It is a nasty disease and recovery can be very hard for some, so support groups are an essential. 

Heads2gether currently meet up regularly at Maggie’s OxfordMaggie’s West London and Maggie’s Nottingham. For more information, please visit their website.

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If you, your family or friends need support during this time, please call us on 0300 123 180, email or book a time to visit us.

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