How I’m helping Bloodwise shape the treatment of people with blood cancer
Mat is a member of the Bloodwise Policy Panel. The panel was established this year to ensure people affected by blood cancer are at the very centre of Government and NHS decision making. He explains how his experience with myeloma inspired him to join and shares the panel’s plans to change the way people with blood cancer are treated.
I really struggled with the impact of diagnosis and treatment
I was diagnosed with multiple myeloma in January 2017. I was 44 when I was diagnosed, although they reckon I'd been bumbling along for a year before that, being told I was arthritic. Eventually I was referred to haemo oconcology at Barts Cancer Institute in London.
I’d been really struggling with the impact of my diagnosis, investigations and nine months of intensive treatment. I didn't realise how affected I had been by the journey until I was spat out of the end of the treatment mincing machine and plonked on the pavement outside the hospital.
I had a stem cell transplant in August 2017. It’s now almost two years since, although I still have a lot of backwards days, generally things are going pretty good.
My treatment made me aware of the gaps in the system
Since finishing treatment, I’ve become aware of all the things I wanted to do differently if I’d had the chance. The questions I should have asked, the information I wanted but wasn’t available from the clinicians, the absence of people to talk to who’d been through something similar. I’ve become aware of the gaps in the system.
My brilliant CNS suggested I have a look at the Bloodwise Policy Panel. I applied and was accepted.
Why I joined the Bloodwise Policy Panel
As a member of the panel, I aim to put a face to myeloma, and provide a perspective of treatment and what non-medical help can do to improve success in treatment.
I don't want to be defined by blood cancer, and I don't want to be dominated by it either. I joined the panel because I want to give some time and energy to help shape and support the treatment of people with blood cancer.
In my experience so far, I’ve found Bloodwise to be really compassionate. Everyone I've met seems to 'get' it. They understand the treatment and political landscape and how powerful the voices of people can be.