After being diagnosed with an aggressive form of MDS, Kal received a stem cell transplant from her brother. Recovery has been tough, but she feels so lucky that her brother was a perfect match. Kal shared her story to celebrate her brother on National Siblings Day.
She also hopes her story will raise awareness. It’s much harder for people from minority ethnic backgrounds to find a match on the register, and Kal wants to help change that.
It was just before Christmas when a doctor told me, ‘We think you’ve got myelodysplastic syndrome.’ I’d never heard of it before. I asked what the next steps would be and how bad it was. It turned out I had an aggressive form that could turn into leukaemia.
I didn’t feel ill. I’d been completely exhausted, but I’d put that down to working long hours in the city and a long commute. I thought I’d be given iron tablets or something. I’d never imagined it could be something so serious. She started talking about a stem cell transplant being the cure, but I couldn’t take it in. I was on my own, so I went out of the meeting and called my husband, crying.
Christmas was a bit of a killer. I didn’t want to tell the rest of my family until I knew 100% what was happening, so we kept quiet and waited for my appointment in January.
I worried about finding a donor
At that appointment, they told me I needed to start treatment straight away. A stem cell transplant was my only option because the MDS was so aggressive. My transplant was arranged for June 2020, but then Covid started, and it got delayed because UCLH was overrun by Covid patients.
I worried about finding a donor. I’m the oldest of five but I knew there was no guarantee that any of my siblings would be a match. The older ones were tested first but they weren’t a match, and I was getting more and more worried.
Luckily, my two youngest siblings were a match and they decided to go with my brother. It was the best thing ever. I bought him a t-shirt saying, ‘I’m The Chosen One’. I felt so relieved. I’ve read stories of people who aren’t able to find matches. It’s scary. I was thinking, ‘What happens if I don’t have a donor?’
I knew that it was harder for people from a minority ethnic background to find a match. I’d looked into it when I was trying to prepare myself for the treatment and I’d read lots of stories. I thought I’d be unlikely to find a donor, if one of my siblings wasn’t a match.
A frightening setback
My transplant was on 19th November. It went as well as it could and I was due to go home on Christmas Eve, but then my family noticed that I wasn’t responding normally. I was responding slowly, speaking slowly – this was all on FaceTime because nobody could come and visit me – so they told the doctors, and they said my family could visit me because they were worried. By the time my family arrived I was fitting, and I had to be restrained. The fits wouldn’t stop so they had to put me in an induced coma. I was in that state until the middle of January.
I’d been moved to a neurological hospital which was partly because of Covid again – at UCLH intensive care was full. When I came back, my doctors were shocked that there was no brain damage. Luckily, touch wood, there’s been no lasting physical damage. My memory is a bit hazy – my long-term memory is okay but my short and medium-term memory is still a bit sketchy. They expect it to go back to normal in time.
Since I’ve been back home, my recovery has been going well. I had some GvHD which affected my skin but that cleared up, and I have sciatica which means I can only get about four hours sleep, but I’m seeing a physio for that. I’m also getting support from a psychologist. It’s been helping me coming to terms with things and giving me some coping mechanisms. My anxiety is still quite high because of Covid.
Covid has made my experience even harder
When I left hospital, I was in isolation at my parents for six months. I couldn’t come home with my kids going to school - the risk of getting Covid was too high. Coming out of hospital has been a lot harder than going in. I feel more vulnerable. Covid has made the experience even harder – no-one could come with me when I needed to have horrific processes, like bone marrow biopsies. Having to do things like that by myself was hard.
I was in isolation in one room on my own for six weeks and then I had to stay longer because of the coma. It was about three months in total that I was in hospital. My family supported me any way they could. They were talking to me on videocalls all the time. Even when I was in the coma, they would call every day. The nurses would hold the phone up so they could see me and talk to me.
Support gives you hope
For someone who thought they were going to get given iron tablets, to come out with a cancer diagnosis... it was just complete shock. I’ve never had any illnesses, no issues whatsoever, and then to be hit with this... it’s been hard. I remember when I heard those words, I felt like my hair was standing on end. I was trying to comprehend what was happening and I just went on autopilot. After that, I tried to prepare myself as much as possible for the treatment.
I had really long hair so, before I started chemo, I started cutting it shorter and shorter. My dad was juicing every healthy thing in sight. It was just all hands on, trying to prepare myself as much as possible. Mentally as well – with things like meditation.
I want to help others
Reading other stories gave me hope as well. But then there are sad stories too. A boy in my daughter’s school, who’s mixed race, he unfortunately didn’t find a donor and he passed away. He was only 18. That’s why I want to do as much as I can to raise awareness.
When I have down days, I remind myself what a miraculous recovery I’ve made. After everything I’ve been through, I feel lucky to be where I am today. What I’ve been through makes me appreciate things more. I’m more present now. I’d like to do something meaningful and that’s why I’ve reached out to Anthony Nolan. I want to help others.
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