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From Patient to Voice: My Myeloma Story

I stopped being just a patient. I started asking, 'Why isn't my experience part of the research that shapes my treatment?' So, I did something about it. I joined patient advisory groups, I reviewed real clinical trial protocols, and I got involved with Myeloma UK. Patients don't just add colour to research. We add context.

~ Solomon, Member of the BRP and Patient Advocate

His story in 8 moments

By August 2018, I sat in a room and heard two words that changed everything: Multiple Myeloma - a blood cancer. Incurable, but treatable. I didn't even know what that meant yet. I just knew my life had split into "before" and "after."
What followed was a crash course in survival: chemotherapy, a stem cell transplant, side effects I never imagined, burning feet, foggy thinking, fevers that landed me in hospital overnight. I learned to read my own blood results like a second language. Numbers that once meant nothing like kappa light chains, MRD, immunoglobulins became the heartbeat of my week.
Somewhere in the hospital chairs, the waiting rooms, and the 2am steroid-fuelled thoughts, something shifted. I stopped being just a patient. I started asking, "why isn't my experience part of the research that shapes my treatment?" So, I did something about it.
I got involved with Myeloma UK, Myeloma Patient Europe, and BCUK, working alongside researchers and clinicians who were, for once, genuinely asking patients, "does this matter to you?". I co-authored articles. I helped shape how quality of life gets measured in trials because a number on a chart doesn't tell you that fatigue means choosing between a shower and a meal.
Data tells you what is happening in a disease but lived experience tells you what it means. I'm not trying to replace the science. I'm trying to complete it. Every time I speak on a podcast, in a trial review, on a trial design, on a stage I'm saying the same thing: patients don't just add colour to research. We add context. We tell you not just what hurts, but what matters.
I also started a podcast called Through MYeloma Eyes to say out loud what most people whisper: the fear, the humour, the grief, the small wins, the shame that shouldn't exist, and the pain that has many faces.
Today I am stable and grateful and still here, years past a diagnosis that once felt like an ending. I am still learning, still adapting and still showing up for myself, and for everyone walking this road behind me. My story is not one about beating cancer. It's a story about living, honestly, in the middle of it and making sure that honesty counts for something.
Through myeloma eyes, I've learned that surviving is not the whole story. What you do with the surviving, that's the story worth telling.
Solomon’s story

After the discovery of a lump in his neck, Solomon was diagnosed with Multiple Myeloma in 2018. Whilst undergoing many different treatments, he began to study his health and results to better understand his condition. This led him to question how his experience could help shape research and the importance of the patient’s voice.

Determined to contribute, Solomon joined patient advisory groups, reviewed clinical trial protocols and worked alongside researchers, clinicians and patient organisations. He also created the Through MYeloma Eyes podcast, not just as an outlet and reflection for himself, but also to be a safe space for others going through a similar experience to realise that they are not alone.

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