HSCT insights: dealing with isolation

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What’s it like having HSCT? Three people who’ve had the treatment share their experiences.

People having HSCT typically spend about a month in isolation following chemotherapy. This is to keep them safe while their immune system rebuilds.

In this blog, we look at what helped them cope with being apart from friends and family.

Mark had the treatment on the NHS in the UK, while Kate and Darren travelled abroad to private clinics.

>> To find out what HSCT is, how it works and who it’s for, visit our information pages

Mark’s Christmas in hospital

Mark

Mark had HSCT in London on the NHS in December 2016

I went into hospital on 18 December to start the chemotherapy. Having two kids, it was a blow not to be at home for Christmas.

I was in isolation for about three weeks. It was mind-numbingly hard work. My wife printed out pictures of the kids and I covered the window with their pictures. This kept me going. I started writing a blog too.

I felt pretty emotional and overwhelmed during the transplant. The emotion came from feeling so fortunate to be receiving it. My family were on my mind throughout.

Kate kept motivated through music

Kate

Kate had HSCT in Mexico in 2016

My dad came with me to Mexico. My husband stayed with the kids to keep everything as normal as possible for them.

We stayed in an apartment for the length of the procedure - four weeks. On most days I went to the clinic for treatment or tests. Nurses or doctors also came to the apartment daily to give me injections or take blood tests. Otherwise the only person who came to the apartment was a cleaner.

When I first arrived it felt a bit like a holiday but it definitely wasn’t. It was an endurance test. Netflix and Skype were life savers. Although dad was there I felt very isolated from family, friends and my regular routine. Every day at 9pm we would call home and catch up on everyone’s day, which gave me a sense of normality.

Other people were having the treatment at the same time and we set up a Facebook group. We sent motivational comments and music videos to each other, like Michael Jackson’s ‘Beat it’ and M People’s ‘search for a hero’.

Darren used the time to reflect

Darren

Darren had HSCT in Russia in October 2016

I was in Russia for a month and in hospital throughout the process. My family were incredibly supportive; my wife flew out to Moscow for two weekends. I had daily Facetime with my family, including when I was placed in total isolation for 10 days.

I’m a sociable guy so the isolation was hard, but I got through it. I had Netflix, books, music…I set up a Facebook group with friends and family so I could talk to people. I also chatted to other people having HSCT through Facebook Messenger about how we felt and the effects of the treatment.

You think about things a lot - it was a time to reflect on my life. My first breath of fresh air after the isolation was fantastic. 

>> Find out about MS treatments and who can help you decide what’s right for you.

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