Supporting pioneering research into adamantinoma.

Adamantinoma is incredibly rare - it accounts for less than 1% of all bone cancers, and bone cancers account for around 1% of all new cancer diagnosis in the UK. Because it’s so rare very little, if any, funding is assigned specifically for it but we want to change that. And if I don’t raise funds for my little rare mutating cancer cells - who will?

We want to initially raise £20K for an Ideas Grant with The Bone Cancer Research Trust. Funding research into adamantinoma is unlikely to save my life but it may well change someone else’s.

I was first diagnosed with adamantinoma in 2001 at the age of 12 And following multiple surgeries I had my leg amputated due to the disease in 2003 when I was 14. In 2018 I was having the time of my life. I had, and still have, a job in communications which I love. I had an even better job on the GB Paracycling team, and having missed out on selection for Rio, firmly had Tokyo 2020 in my sights. I was also due to be married in September to my boyfriend of 7 1/2 years. I had raced in Belgium at the start of the season and had picked up a nasty chest infection. I raced the TT as best I could, and my power numbers weren’t too bad, but I sat out of the road race feeling exhausted. I came home and couldn’t shake a nagging cough and some mild pain in my back and shoulders wasn’t budging with the usual physio so an ultrasound was done.

When a doctor says, your rib looks a bit cloudy, maybe it’s a stress fracture, I’m not sure, let’s do an X-ray, you kind of know something isn’t right. When they suspect you have pneumonia because it looks like fluid in your chest and send you for a CT scan, you start to panic. But when the consultant says you have some suspicious shadows on your lungs and, given your history, it’s highly likely that your cancer is back, your mind goes blank. And then you hyper-ventilate, your mind kicks into overdrive and you can’t even see straight. The tube journey home is utter torture.

In the blur of scans, biopsies, and draining fluid from my lungs - 2.5 litres if you’re interested, which is quite a lot to be carrying around and not noticing - it was confirmed my cancer was back and because it’s metastasised it is incurable.

But there was no way that was going to ruin our 2018. Jack and I got married - twice. We spent our first honeymoon in the Macmillan Cancer Centre starting radiotherapy but had much more fun on our second honeymoon spending two weeks in Greece. I rode my bike, had more radiotherapy, and spent a lot of time seeing friends and family. And laughing, we have laughed a lot and continue to - because what’s the point if you can’t laugh! We’ve settled into a routine of scans, working, last-minute holidays and now my husband and I want to create this fund to change the landscape of research into adamantinoma in the UK. It’s not a lot, but it’s a start.

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