Colette holding her wig

HSCT insights: it made sense to me

Colette Beecher is an occupational therapist specialising in neurology. She has worked with people with MS for 25 years, and found out the relevance to her own health in January 2011, when she was diagnosed with MS herself.

I was diagnosed in January 2011, started my first symptoms in 2010. Pins and needles in my left arm. They disappeared but then I got a nasty bout of flu, which is what – I think – triggered my first proper relapse.

An MS diagnosis

I’d been suspicious it was MS. I’d go to the supermarket and drop packets of biscuits in the aisle, because I couldn’t hold on to them properly. Or I’d be eating dinner and keep missing my mouth… tell-tale signs something neurological was happening.

I paid for a private MRI and the results came back the following day – it was MS. I started on Avonex and my symptoms didn’t progress very quickly. But soon noticed I was falling into a pattern of two relapses a year – that’s when I heard about HSCT. I ticked all the boxes.

HSCT felt right to me

When I went on treatment before I’d agonised over my options. The DMTs offered had side effects that made me nervous. But with HSCT, I understood the processes involved and it made perfect sense to me. And although it’s chemotherapy, which I knew could be tough, it’s a treatment that’s familiar. It’s a known risk. I knew what to expect and that was very reassuring to me.

Before I started HSCT, the oncology nurse gave us all this information, and explained potential complications. I had a few blisters in my mouth but it never went any further. I know that’s not everyone’s experience of chemotherapy so I feel very lucky. Weirdly, the only symptom I really had was hiccups! Apparently it’s quite a common side effect of chemotherapy.

A bright outlook

I’m now two years post treatment. Symptoms come and go. I still have some numbness but I don’t have spasms in my spine anymore. I recently had a follow-up MRI and it confirmed that there have been no further signs of active disease since having HSCT. This is what I was hoping for – I’m very thankful. I was ready to return to full-time work 4 months after my treatment.

I’m also doing a PhD, following people’s journeys on HSCT. It’s looking at their different experiences and expectations of the treatment, interviewing them to find out how they came to the decision. It’s a lot of work but it’s great!

This blog first appeared in Research Matters magazine. If you’d like to receive Research Matters by post, email supportercare@mssociety.org.uk to ask about subscription. You can also download the full issue for free.