Sarcoma Awareness Month - Matt's story

Posted by June Heath on 28 July 2025

As Sarcoma Awareness Month draws to a close, we wanted to share this from our RNOH Charity Ambassador, Matt Forde, as he writes about his experience with sarcoma, the people who helped him and the power of taking action.

“July is Sarcoma Awareness Month, which is fitting for me as I was diagnosed with a sarcoma in July 2023.

My sarcoma was a chordoma, a very rare cancer affecting around 1 in a million people (I know, special).

It was on my sacrum. My oncologist thinks it could have been in there for five years, slowing creeping up my spine. The little bastard. (The tumour, not my oncologist. He's great.)

Thank GOD I found it when I did. I developed blistering nerve pain in my left buttock and hamstring area. Part of my bum was numb, too.

I'm telling you this because if you've got similar symptoms, get it checked. Having an MRI is crucial. Be pushy if you need to be. It's better to push and get good news than put it off and have a tumour creeping up your spine you don't catch early.

In fact, if there's anything wrong with you, get it checked. You know your body. You know if there's something wrong. Don't put it off. Don't think 'oh it'll just clear up'. Advocate for yourself. Either way it's good. If you're lucky, it's nothing serious. If you're not, you've caught it early and you have improved your chances of survival and minimised the damage.

When I was told I had cancer I just couldn't believe it. I thought I had a slipped disc. But you have to rapidly adjust to the new reality. I had to come to terms with my own mortality and how my life was going to be different.

I just wanted to live.

Being alive is wonderful. This planet, this place is special. For all our problems, even in the darkest times we find a way to get through and to feel hope. We have to believe that things will get better. They often do.

Trying to imagine your future with a changed body is impossible until you've started to live it. Having a stoma, having to self-catheterise and dealing with erectile dysfunction terrified me. Would I be able to live my life, go to gigs, the pub, football matches?

I've done all those things and more, because we adapt. You just get used to the new way and then it doesn't even occur to you.

Having a stoma is nothing. I don't want to minimise how difficult it can be for other people, but for me I barely think about it. It's a very small change. I'm more careful about what I eat and when. And if I'm going to see Oasis, I pop a couple of Imodium.

For the rest of my life I will be deeply grateful to @thernohcharity for operating on me, nursing me back to health and for their continued help in my recovery, to Glasgow Royal Infirmary for discovering the tumour and to UCLH for keeping a watchful eye over me every six months.

I'm lucky to have survived cancer and be almost in one piece. I know millions aren't so lucky.

When I was in that hospital bed in pain, I didn't resent people who were having a better time than me. I wanted them to be out there, living life in every way that made them happy.

Life is a gift and you never know when it's going to end. Make the most of it.”

Matt spent several weeks as an inpatient at RNOH and credits the wonderful staff and the volunteers here for their part in his recovery. He became an RNOH Charity Ambassador to give back to the hospital and now helps us raise awareness of our work and build funds so we can carry on helping to make more improvements to the hospital, from providing state-of-the-art equipment to revitalising the facilities for patients and staff. He even has his own page where you can leave him a message of support. Click here to see.

We’re sending our thanks to Matt and to all our supporters – from fundraising and donations to helping us spread the word – everything you do means we can do more. Thank you all.