Me and myeloma: Paul’s story

Tell us a little bit about yourself.

My name is Paul and I am 56. My husband Greg and I are daddies to an over-anxious Goldendoodle called Wesley. I used to work in Higher Education, but we are both retired now through ill health. Me with myeloma and Greg with Parkinson’s. We both do some part-time work and love cooking, jewellery making, and long country walks.

Tell us about your myeloma diagnosis.

My diagnosis took quite a while to finalise, after a number of hospital stays in 2019 for hypertension, kidney problems, and diabetes. The picture was finally made clear in January 2020. I really didn’t fully understand what was being said but was relieved when someone appeared to know what was wrong. I left the diagnosis confused but in the possession of a reassuringly large pile of reading materials (still unread).

What helped you when you were first diagnosed?

After I started treatment, my priority became battling with side effects, and to be honest I spent very little time thinking about myeloma. I wrestled with water retention, blood sugars, and numbness; each day, counting out a multitude of pills and potions. I allowed myself very little time to emotionally consider my diagnosis and prognosis.

What kept me sane was the specialist nurse team and the online support group from Myeloma UK. What I valued most was a safe place to ask dumb questions and being told how things really work.

Don’t do it alone! My husband Greg attends all my consultant appointments and he never fails to hear the things I missed, or to ask the question I forgot.

What advice would give to someone who is newly diagnosed?

Just ask questions would be my advice. It is easy to feel struck dumb by the Latin-infused speak of hospitals. Understanding is important so don’t leave any consultation or start a new prescription until you understand why, even a little bit.

Has being gay impacted your experience of treatment or diagnosis in any way – positive or negative?

I am sure that most of what Greg and I encounter is similar for any couple facing the challenges of dealing with life-altering news. Generally, we have found people are supportive and open. However, I still find several “old school” assumptions in certain parts of the NHS:

  1. You don’t work or have an employer that is very accommodating.
  2. You are freely available to change appointments or wait endlessly.
  3. Your “wife” is available to deliver and collect you 24/7.
Close-up photograph of a hand holding a mobile phone.

Stay in touch

We’d love to stay in touch. Join our mailing list to receive updates from Myeloma UK including our monthly newsletter and updates about our services, research, campaigns and other ways you can get involved.