Bob on life in a wheelchair and taking on the London Marathon

Tuesday 06 September 2022

Maggie's Cheltenham

"I’d first thought about giving back to Maggie’s the very first time I went to the centre."

My diagnosis 

I was diagnosed with chronic fatigue syndrome in the 1990’s. Over the years, my mobility got worse and worse so I had an MRI to see why.

The scan revealed a tumour in my neck, which I had removed.

Two weeks later, I had an appointment with an oncologist, instead of the ENT team I was expecting. 

I was diagnosed with cancer - a salivary duct carcinoma - and I was told I’d need 30 sessions of radiotherapy. 

There are only about 200 cases of my cancer worldwide every year and there was little information out there about it, only one small study. 

The odds were not good. I was looking at around two years. Learning this at 56 was devastating.

My oncology nurse suggested that I come and speak to Maggie's.

I’d never heard of them, but my nurse encouraged me to go in for a cup of tea and a chat. 

Finding Maggie’s 

At Maggie’s in West London, I met Louise who is a star. 

The thought at the front of my mind was "how am I going to tell my mum?" 

“Why don’t you bring your mum with you?” Louise suggested. 

The team were able to have the conversations with her that she felt unable to have with me. It was such a relief. 

I discovered it was harder for my family and friends to deal with my illness than me. I spent a lot of time managing their expectations and emotions. But, at times, I just needed to focus on myself. 

"Knowing that Maggie’s was here to support my family took a hell of a lot of weight off my shoulders. My mum would have struggled much more without it."

I came to Maggie’s every day during treatment. It was a godsend. If I felt bad, I had somewhere to relax before going home.

The choir was a great distraction and gave me something to focus on, rather than just thinking about treatment all the time. 

The London Marathon 

I’d first thought about giving back to Maggie’s the very first time I went to the centre. 

In 2021, I was watching the London Marathon on TV. I watched a man in a wheelchair go past. He was in a day chair, just like mine.

I got my place in Team Maggie’s just a few days later. 

Racing in a chair is a completely different challenge, but I love a challenge. I’m finding that my mindset is stronger than I gave myself credit for.

Using a wheelchair 

Due to my chronic fatigue, my mobility continued to get worse, and I started using a wheelchair just before the pandemic. I now use it most of the time. 

Life in a wheelchair is a bit like life after cancer. You find your own way of dealing with it because no one is going to live this life other than you.

I can say hand on heart that I never appreciated the challenges people in wheelchairs face in their day to day lives. 

Society isn’t built for it and it’s something I am fighting to improve. Having something to fight for really helps my mental health. Change is slow but I am determined.

If you use a wheelchair and you want to take on a challenge, I’d say don’t view anything as a barrier. Just meet everything as it comes up. 

Five years on 

There are still days where I think that this is just too much to live with. I’m coming to the end of my five years of check ups with the hospital.

It feels like you’re being let loose again like an animal who has been taken in from the wild, been cared for and been restored.

It’s a tentative few first steps. 

But then I look back and it was a tentative few steps when I first got into a wheelchair. A tentative few steps when I first retired from work. A tentative few steps when I first started treatment.

And here I am at the other end of all that. 

I had faced the prospect of possibly only having two years, and here I am five years later. 

The ‘Where Now?’ course was really challenging and thought-provoking, and it got me to where I am today.

When a new challenge comes up, now I just see it as a new thing to make the most of. 

We're here with you

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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Last review: Jun 2023 | Next review: Jan 2024

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