Patient stories

“It was splashed all over the paper, and I thought, ‘What’s all this fuss about?’ But it had been the biggest breakthrough in about 25 years, apparently. The best thing since sliced bread.”

“I actually found out about my diagnosis by the GP sending me a photo of a letter to take with me to the hospital, saying ‘possible leukaemia’."

“Max didn’t understand why Daddy was gone for a week every couple of weeks.”

“I just burst into tears, and I said, ‘Really? This isn’t going to kill me?’ And she said, ‘Not if you don’t let it.’”

“You know what? From 2020 onwards I have very little written in my diary, because you just know that some days are good, and some days are not so good, and that’s it, really.”

“After all that happened, the myeloma really started to take off. So my haematologist said it was time for us to do something. No argument.”

“I’m really grateful to finally find some other people out there with ET – you know, we’re rare, but we are out there!”

"My body weight plummeted until I was little more than a bag of skin and bones.”

“The difficulty of it was, I went through all of that, and it didn’t work.”

“It was very hard for my daughters. Initially, they were scared, and they couldn’t accept it.”

"I was so relieved because I knew once they found something, we could work with it."

"Dance saved me – it’s in my blood."

"I think it’s about time that I actually go find out what’s happening. Because now it doesn’t feel like anaemia. It feels like something else.”

"One doctor told me that if I hadn’t gone to get sorted when I did, I may have only had another fortnight, if I was lucky. That was a wake-up call."