Me and myeloma: Louise’s story

Tell us a little bit about yourself.

My name is Louise. I’m 61 years old. I originally trained as a nurse before working as a counsellor in the NHS for 30 years. I specialised in oncology, HIV and, most recently, worked with people with visual impairment.

I had to stop cycling when I relapsed in 2020 but I’m now back on my bike and I’m really enjoying cycling around Richmond Park and along the Thames. I’m also taking oil painting lessons. I’d always wanted to try it and it’s been good for my wellbeing. Since we retired, my wife Bridget and I are enjoying travelling together. We had a nice holiday in Barbados and we’ve just come back from Cornwall. We’re going to Lindisfarne soon. We love going to the theatre. And, of course, we have our dog, a cockapoo called Elton John, who keeps us on our toes. We enjoy walking him and playing with him.

Tell us about your myeloma diagnosis.

I was diagnosed in 2017. I’d been treated for a frozen shoulder for about six months and it was extremely painful.I was driving the car and I hit a curb, not very hard, but the pain was absolutely excruciating. I found out when I was diagnosed that my shoulder was broken and I’m sure that’s when it actually broke.

The GPs were good. I had a CT scan and all the tests for frozen shoulder but nothing showed up and it started getting worse. Eventually a physio sent me for an MRI and it showed that I had a pathological fracture in my shoulder and a plasmacytoma. That’s when I was diagnosed with non-secretory myeloma.

My wife and I are both nurses. Bridget had managed the myeloma unit at the Marsden and her knowledge of myeloma treatment was 30 years old. When we knew that area of work, there was no treatment. We both thought it was a death sentence. I gave away all my possessions. I was very shocked and it took me a long time to adjust.

I remember at the time, we both said to the consultant, ‘If the stem cell transplant isn’t successful or when that treatment fails, we take it it’s palliative care?’. The consultant looked at us and was really horrified. He said, ‘Gosh no, there’s lots more lines of treatment’.

I had chemo, radiotherapy and a stem cell transplant. I took me probably about a year to recover. My arm was completely immobile but, gradually, things improved. Because I’m non-secretory, nothing shows in my blood, only on MRIs. I relapsed in 2020 after a routine scan showed I had a plasmacytoma in my left humerus. I had radiotherapy and since then I’ve been on three-monthly full-body MRI scans. I get quite a lot of chest infections so I’ve been hospitalised three or four times over the last year or so, but I’ve been OK.

What helped you when you were first diagnosed?

In addition to massive support from my friends and family, I had therapy from the Marsden, which I found very helpful. It’s good to have somebody who understands. And I have such a supportive partner in Bridget. She’s been there all the way for me.
I have a real sense of ‘carpe diem’ now. To seize the day and go for it. I actually celebrated my 60th birthday a year early.

What advice would give to someone who is newly diagnosed?

I would advise them to be kind to themselves and to be around people who are kind to them. Do things that make you feel good. Don’t be too hard on yourself and try and believe some of the reassurance you’re getting from clinical staff. Believe them when they tell you it’s not a death sentence.

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

In other healthcare situations in the past, we’ve had all sorts of mixes and muddles where people made assumptions about our relationship. So, one thing we both decided to do was to be really clear about introducing Bridget as my wife. It was about trying to be as open as possible.

People have been supportive about it. I think we’ve only had one negative experience where a nurse was very obviously homophobic and quite shocked about our relationship – but not at the Marsden. But generally, as a couple, we’ve been accepted as a unit.

Close-up photograph of a hand holding a mobile phone.

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