BSH 2022 | Myeloma and amyloidosis: patient experience as a medical professional
Scarlett McNally, BSc, MB, BChir, FRCS(Tr&Orth), MA, MBA, FAcadMed, East Sussex Healthcare NHS Trust, Sussex, UK, shares some insights into her talk at BSH 2022, which focused on her experience as both a surgeon and a patient with myeloma and amyloidosis. Dr McNally shares some insights into her personal experience with treatment and how this impacted her life. Although Dr McNally was initially told that she was not fit enough for a transplant, she used exercise to build up her fitness so that she could undergo treatment, and emphasizes the importance of encouraging other patients to do the same in order to improve outcomes. This interview took place at the 62nd Annual Scientific Meeting of the British Society for Haematology (BSH) 2022, in Manchester, UK.
Transcript (edited for clarity)
It’s been really lovely being at BSH, because I was invited as a patient and a surgeon to talk about my experiences. So I was talking about having myeloma and amyloidosis, and I’ve had that for three and a half years now. And at times, the treatment didn’t feel like it was working, and I had a stem cell transplant which has worked very well indeed, and I’m on maintenance chemotherapy now...
It’s been really lovely being at BSH, because I was invited as a patient and a surgeon to talk about my experiences. So I was talking about having myeloma and amyloidosis, and I’ve had that for three and a half years now. And at times, the treatment didn’t feel like it was working, and I had a stem cell transplant which has worked very well indeed, and I’m on maintenance chemotherapy now.
So it’s quite a lot of ups and downs. Some of it’s the practicalities and the treatment and being a patient when you’re used to being the doctor and when to demand different things, when to sit back and let things happen, it’s kind of changing you as a person and then working out how it fits with your family and everything, the steroids making you go a bit mad, but sometimes using that and being aware of what it’s like for other people around.
And the big thing, because obviously I was reading up about it all the time. The big thing for me was being able to do something to try and improve things. So initially I was told that I wasn’t fit enough for a stem cell transplant and I worked out what I would need to do to get fitter. So I couldn’t even walk at that stage without getting short of breath, and I got an electric bike and I built up every day doing a little bit more and a little bit more.
And it was almost like some days you forget to take your evening medication, so you go downstairs and you take them, it was a bit like that with, “Oh, I haven’t done my exercise yet today. I’ve got to get up, I’ve got to go out and do it.” It was that sort of thing.
It was part of my treatment and I built up and I built up so I could do a seven-mile daily trip, and it built my heart up so that I could get through the Bruce protocol, which is a cardiac assessment thing in order to be permitted to have a stem cell transplant because I didn’t want to die. Not when I had a kid doing GCSEs and a kid doing A levels. I wasn’t ready. I was so angry. So that’s what it’s been about today. That’s what I’ve been talking about.
It’s about being me with all the different bits of being me, but also what can we do to get patients fitter? Because it makes such a difference. Exercise is a miracle cure. It really does make a difference.
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