Me and myeloma: Marion’s story

Can you tell us about your myeloma diagnosis?

It was a chance finding when I was being investigated to see if I was suitable for HRT. It was a great shock, especially as nothing was said to prepare me for the bad news. Unlike most newly diagnosed people, I had a very good idea of what myeloma was, and I initially felt quite resentful.

What helped you when you were first diagnosed?

I had an elderly friend whose daughter, a registrar in oncology, had to have a leg amputated. She talked things through with me. Besides her, the only help came from Myeloma UK, which had just started up.

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

Speak to your specialist nurse and contact Myeloma UK.

Can you tell us about your experience with remission?

It was a relief to be able to do ‘normal’ things again. I visited several places that I’d always wanted to see.

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

See as much as possible of your family and friends, and work down your ‘bucket’ list.

Can you tell us about your experience with relapse?

I had several nasty infections the first time I was told I was relapsing, so I wasn’t surprised when my team recommended treatment. Subsequent relapses were found after blood tests showed rising paraprotein levels.

What helped you when you relapsed?

Having been diagnosed at a fairly young age, I had always known that I would likely relapse, but it’s still not easy when it happens. The hospital staff were very helpful.

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

I made up my mind to fight it all the way, although I realise that not everyone can deal with it like that.