Dwayne

Dwayne talks about his diagnosis of mycosis fungoides, a type of skin lymphoma, and the impact it has had. 

Dwayne

As part of the creative writing section of my university degree, I was asked to write about something that had an impact on my life. That wasn’t difficult for me…

Five years ago, I was 25, living a family life with a partner and her daughter and I had a full-time job. 

I desperately needed a haircut, so headed to my barbers. At the time I had no idea of the impact of something he said to me: ‘You have really thin patches of hair Dwayne. You might want to get them checked out as it could be alopecia (spot baldness, often on the scalp).’ I decided to see my GP who checked me over and told me it was probably just an allergic reaction to a kitten we had recently taken on.

 
I had no idea of the impact that trip to the barbers would have.
Dwayne

Over the next 3 or 4 weeks, the patches of hair got worse and it looked like a UFO had come down and made crop circles on the top of my head. My doctor referred me to a specialist at the hospital who took a biopsy from my shoulder and told me to come back in a couple of weeks' time for the results. My partner came with me when we went back, but I told her she didn’t need to come into the consultation with me. I wouldn’t be long and it would be nothing to worry about. Little did I know!

I was diagnosed with stage 1 mycosis fungoides or MF for short. It was explained to me that it is a type of lymphoma that affects the skin. Because it was early stage and not affecting my health, no treatment was necessary at diagnosis.

I kept going back to the hospital for check-ups and reviews and over time I had about seven or eight biopsies. It came to the point when I was told that they wanted to do five sessions of radiotherapy over 5 days. This was when it really hit me. 

They said they would need to make a metal plate for the bottom of my back. I joked: ‘Like Robocop?’ But sadly it was far less cool than that; it was a metal plate in the shape of the top of my bum and back.

 
They needed to make a metal plate to protect me during radiotherapy. I pictured 'Robocop' but in reality it was far less cool.
Dwayne

I found the five sessions of radiotherapy went OK; they involved a fair amount of waiting around, and then me lying down while a large machine zapped me through a hole in the plate that was made for me.

The patches went down and, whether it was coincidence or part of the treatment, my hair grew back, which was massive for me. 

Since then, I have only needed to go for regular check-ups

For quite a while, I was able to put it to the back of my mind, but over time I have realised that emotionally it has affected me far more than I really acknowledge. If I feel unwell at any point – and recently when I had back pain – my first thought is about my lymphoma, and I feel it will always feel present in some way.

Find out more about skin lymphoma at lymphoma-action.org.uk/skin-lymphoma