What cancer were you diagnosed with?

Stage 4 Alveolar Rhabdomyosarcoma

What age were you diagnosed?


What has helped you to thrive?

I had a new found positivity and appreciation for life, which has helped me thrive! My friends and my family have been absolutely amazing with their constant support and I can’t thank them, and Ward 27 at Leicester Royal Infirmary enough - for saving my life!

Daisy's Story

In May 2017, I started to get really bad back pains. I didn’t think much of it, because I’d been carrying a heavy bag to uni every day for the past few months, so thought perhaps I had overdone it! After mentioning it to my GP he kept an eye on me and told me to go back if it got worse.

The pain did get worse! Much worse! It then spread to my right leg and I was in absolute agony. It felt like really severe growing pains! I couldn’t even stand up straight, I was bent over at a right angle, and sneezing would send me into spasm and I’d collapse! It was bizarre. I went back to my GP, and he sent me for an urgent MRI scan. Various specialists looked over the results and tried to determine what exactly the problem was, all my blood tests seemed fine. They found shading on my spine after another MRI, a PET scan and a CT scan. I also had a raised lymph node under my left arm, which was removed and used for a biopsy.

All these tests and scans helped them to determine that I have cancer of the soft tissues. So random! I’d never heard of Sarcoma before.

I had an ovary removed to try and preserve my fertility, at John Radcliffe in Oxford. In September 2017 I started my 6 brutal cycles of VIDA chemo and lost all my hair. I lost so much weight due to lack of appetite and mouth sores that I ended up having a gastostromy PEG for feeding. I had multiple blood transfusions and more than one case of sepsis, but somehow survived the most horrific few months!

A year later, I’m now onto my sixth cycle of maintenance, which is planned to go on for a year. My recent scans have shown good progress and it’s stabilised. But stage 4, around the body, is always going to be hard to control. Plus they’ve never known my primary source, so keeping it away will be interesting!

Read more of Daisy's story here

Oopsy Daisy