Patient stories

“I just take one day at a time. I want to get on with my life and be really strong through all of this.”

A legacy of hope for future generations

“It wasn’t possible for me to have a stem cell transplant. My haematologist basically said, ‘New Zealand can’t do anything more for you. You need to look at CAR T-cell therapy.’”

“Over the last year, I’ve had a good quality of life. I still exercise almost every day.”

“I remember one time they brought me the dinner I’d ordered, and I looked at it and just started to cry. I wanted it, but I just couldn’t eat.” 

“You start reading about it online, and then you freak out, because it’s sort of saying you’ve got five years to live.”

“So many people could have quality of life with daratumumab, but it’s not funded. I know how lucky I am.”

“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.”

“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 didn’t know what she wanted to talk about. And then she gave me eight weeks to live.”

“I’ve got amazing friends and family – they’ve all been there when I’ve needed them… And sometimes just being there is the best thing they can do.”

"He was OK for a couple of years before it started to rear its head again. That's when they offered him the first clinical trial."