Me and myeloma: Deb’s story

Can you tell us about your myeloma diagnosis?

I didn’t have any symptoms but was diagnosed from a random blood test so the whole diagnosis was really out of the blue and hit us for six. Our children were 2 and 4 so it was really hard to comprehend what the future might look like.

What helped you when you were first diagnosed?

The Myeloma discussion forum and website really helped me to realise I wasn’t the only person of my age (34) to go through this. Making friends with these people (mainly online) was such a major turning point for me.

What message or advice would you give to someone who has just been newly diagnosed?

Don’t read the internet – stick with myeloma.org.uk. And find someone you can share with. Don’t feel bad if that isn’t always family.

Can you tell us about your experience with remission?

It wasn’t full remission – only partial. But I tried to go back to as normal a life as possible, taking up netball, cycling and working.

What message or advice would you give to someone who is in remission?

Enjoy the time and don’t worry about what ‘might’ happen.

Can you tell us about your experience with relapse?

I knew it was coming but was really disappointed despite having 8 years of remission. I set myself a new fundraising task of raising £50,000 before i (hopefully) reached 50.

My consultant has been very supportive and empathetic when I have relapsed and has taken the time to explain the various options to me. I have really appreciated that support, as well as the openness and realism about future lines of treatment and how I might tolerate them. I have tried to maintain my positive mindset when I have relapsed and to be pragmatic about starting a new line of treatment.

What message or advice would you give to someone who has relapsed?

Don’t panic. Things are changing all the time with treatments.