In 2013, Alex spoke to us [https://www.youtube.com/watch?v=5ZyGuY3frsI] about living with Graft versus Host Disease after a transplant and the effect it’s had on her body. Two years have passed since the video was filmed, and we’ve recently caught up with Alex on how she’s doing – here she talks about how she’s learned to accept the changes and adapted her lifestyle to suit her needs.
I had my second stem cell transplant almost two years to the day after my first. As I had relapsed from the first transplant, the second transplant had the donor’s T-lymphocyte cells left in, so that I might develop Graft versus Host Disease (GvHD) and its associated Graft versus Leukaemia effect.
The idea is that the donor’s T-cells eliminate any residual leukaemia that the chemotherapy and radiotherapy haven’t blasted. It seems to have worked – I’m now 28 and 8 years in remission.
The chronic form of GvHD creeps up on you, with changes happening relatively slowly. I initially developed problems with my wrists – tingling in my hands and slight restriction in movement. Then my symptoms widened to include my skin thickening in places and becoming scar-like in appearance. Currently I think the only parts of my body that haven’t been affected are my outer ear and forehead! I stopped doing things like yoga due to my joint restriction but in hindsight I should have kept going and pushed myself harder – the less you do the worse it will get.
I started receiving extracorporeal photopheresis five years ago at Rotherham Hospital to treat my GvHD. I went fortnightly for the first three months and then once a month thereafter.
My consultant now thinks my GvHD has ‘burnt out’ and so has reduced the frequency of my treatments to every three months – I’ll hopefully be able to finish the treatment soon.
The treatment has allowed me to come off a lot of the drugs I was taking. I came off steroids last year and lost the weight I had gained, so I feel much happier with my body. The longer I’ve lived with my ‘altered appearance’, the more at ease I become with it. My skin has improved in the last year or so and people keep commenting saying how much better it looks.
I’ve had treatment from a physiotherapist and I try to incorporate stretches into my daily routine so that it isn’t a chore. For example, when I clean my teeth I stand on the edge of the bottom stair with my heels hanging off to stretch out my calves (while clinging on to the banister with my free hand). I’ve also been treated by occupational therapists and they made me some wrist splints to wear at night. These are a great way of maintaining movement. The natural form of the body is to curl up so you need to actively stretch it out.
Taking responsibility for your own health is something I believe in very strongly. I understand my disease, the treatments and the drugs I take. I try to eat healthily and stay as fit as I can. I go swimming and have started Pilates and Zumba classes. Both of my feet now sometimes leave the floor at the same time!
I’d never been a gym person; I much preferred to be outdoors on my bike or walking. However, with a gym you can tailor your exercise very specifically to certain parts of your body, and when you’re tired you can just stop and go home instead of being on your bike 10 miles from home! It’s also much easier to measure your progress.
I found out recently that my bone density is above average, which is amazing considering that I’d taken steroids for years. Plus my dentist says I have excellent teeth, even if my gums have receded, so I’m not completely broken!
I still need a lot of sleep and I have to pace myself, but I’m always busy. I’m learning French and I’m the membership secretary for my choir; I love crafty stuff and I’m currently working my way through a ridiculously intricate cross-stitch for my baby niece. I work as a project coordinator, specialising in compost, for the organic horticultural charity Garden Organic. I also campaign against food waste and have helped to organise Disco Soup and Disco Salad events such as the one in this video (you can see my arm at one point!). . These events originate from food waste campaigner Tristram Stuart and his environmental organisation Feedback .
People always say I’m so strong and courageous, but I just live my life. I was 17 when I was diagnosed, so it’s hard to say whether I’d have grown up differently if I hadn’t been ill. I have some absolutely wonderful friends and family, and that always helps me see the positive in life.
My friends from university are currently fundraising for Anthony Nolan. Five friends, along with my dad, who’s a keen cyclist, are cycling from Rotherham Hospital (where I receive photopheresis treatment for GvHD) to the Queen Elizabeth Birmingham (where I received both of my stem cell transplants). The route will spell out ANTHONY NOLAN, and my best friend Sarah and I will be in the support car, providing everyone with encouragement and emergency rations.
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