Me and myeloma: Scott’s story

Can you tell us about your myeloma diagnosis?

Looking back I can now see my symptoms. A 18 month ear infection that wouldn’t go away, kidney pain that was dismissed as back pain, a strange rash that appeared on my chest, a three year verrucas, tiredness and loss of energy. All dismissed by my GP.

First I was told it was kidney failure, and a trip to A&E, where there was no obvious reason my kidney function was so low, my bloods got sent around a lot of different at Guy’s Hospital.
I was a month away from turning 40. 2019 was already a tough year. September 18th at 2 pm, I was told I had multiple myeloma and I had to have a bone marrow biopsy at 3 pm.

Of course my head started to spin, I was crying and asked if I was going to die. ‘No, it’s treatable and you live.’ I was told it could have been a lot worse and it was caught at the right time.

I can’t say that it has been easy – having a long-term illness is hard. Having a stem cell harvest and two stem cell transplants during covid-19 pandemic and being isolated for 8 months was tough. But now being in remission and on a maintenance drug, it’s all really doable. I’m lucky, I’m feeling healthy and happy and I’m trying to stay that way, so that when the myeloma comes back, I’m in a healthier place to beat it again.

What helped you when you were first diagnosed?

Being given booklets on my first consultation was really helpful, can be overwhelming but it’s needed – this was how I first came across Myeloma UK.

I took my own time in telling people – family and close friends first. Then over the course of three months I started telling friends and colleagues, who I wanted to know, face to face. I had to get used to the notion and the treatment first. My concern was my partner, and if he had enough support from friends and family. Then we built a network of people around us.

I wanted to make sure I knew exactly what was going to happen to me and to understand my cancer, before telling the vast majority of people. This all came from Myeloma UK’s booklets and website.

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

My amazing Clinical Nurse Specialist, Grace at Guy’s Cancer Centre told me not to Google myeloma – just use trusted charity websites. And I never have.

Can you tell us about your experience with remission?

It was all very strange as we were still in a covid world and I wasn’t able to fully go out and lead a normal life and mix with people. My energy after a double transplant was slow to rebuild – it’s taken over a year. But now I’m on len maintenance and having regular check ups at the hospital I feel confident I’m in remission for a long while.

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

Keep as healthy as you can and get as much sleep as you can. Talk to others who are in similar situations. Finding others on social media and talking is really a great way to build your own confidence.