‘I’m not going to lie, I am scared. I wouldn’t be human if I wasn’t.’ Kerry’s pre-transplant story
When Kerry was told she needed a stem cell transplant, she decided to do anything she could to help other people. From sharing her experiences, to spreading the word, this is Kerry’s story so far..
I’m about to have my transplant and I wanted to share my story to help other people who might be going through this.
When you’re told you’ve got a blood disorder or blood cancer, well any sort of cancer, it’s scary. I went through a period of feeling really down in January, because I got sepsis and I was scared, and my mental health got low. I didn’t want to leave the house.
So, I just want to say to people: even though this is a rubbish time, make sure you get support, talk to people. I’d hate for anyone to fall down the hole that I did, not talking to anyone, feeling lost, keeping yourself secluded. It’s okay not to be okay.
I also want to remind people not to ignore symptoms. Just go see a doctor. When I eventually did, they asked me about all these different symptoms and I realised that I’d been ignoring lots of them and putting it down to something else. You never expect it to be something this serious.
When my blood test results came back, they told me that my platelets were low – at the time, I didn’t have a clue what platelets were, so I didn’t really know what that meant, but everything started moving really quickly then. They did a bone marrow biopsy and here we are today…
For me, the uncertainty was the hardest part
The only way I can really describe getting my diagnosis is, I felt numb. They originally thought I had leukaemia, and I just thought ‘Okay, we’ll deal with this.’ My mum had breast cancer twice and she went into remission last July, so for two and a half years I was her carer. Being there for her, I knew what would happen with chemotherapy and the emotions that can come out of it.
But then they weren’t certain, so I had to keep having tests. I think that uncertainty was what got to me more, but I just tried to be positive and think ‘Whatever it is, we’ll deal with this’. A few months later, they confirmed that I had myelodysplastic syndrome (MDS).
I managed to keep my spirits up, until I got sepsis. Then that hit me like a tonne of bricks. Before then, when I looked in the mirror I thought, ‘I still look like me’. I was tired, but I’d think, ‘Well lots of people are tired.’ Then I got sepsis and it really hit me that I was ill.
It wasn’t the diagnosis that I found hard, it was more the treatment that I would have to have and the impact it could have on my body. I was 26 at the time and talking about fertility treatment. I wasn’t with anyone at the time, so I was sitting there thinking, if I get into a new relationship, what do I tell them? When do I tell them?
Having a transplant is scary but I’m just going to take each day as it comes
The doctors told me at the beginning of the year that I might need a transplant. They said that would be the best chance of a cure. I didn’t know what a stem cell transplant was, so I did some research and read about all the risks. Sometimes I do feel like you can do a bit too much research, but I think it helped me feel prepared. When I got told in March that I definitely needed one, I felt like I knew what I was getting into.
I’m not going to lie, I am scared. I wouldn’t be human if I wasn’t. There are so many things that could happen, there could be complications, you just don’t know. But I am so excited. I see it as me being re-born. It’s going to be the start of my new life and I’m on the road to recovery now. That ‘day zero’ – I’m classing that as a new birthday. I’m going to be greedy and have two birthdays every year, now!
But I’m also trying not to be overly positive, because when things don’t go exactly to plan you end up more disappointed. So, I’m hoping for the best, but being realistic.
Obviously, there’s also the bit afterwards, where you go home and need to take care of yourself, but my nurses are amazing and they’re always at the end of the phone.
I’ve got a few goals next year, things that I’ve planned to do – a holiday, stuff with my friends – not set in stone, but something to look forward to. That’s my light at the end of the tunnel.
Whoever the donor is, they are my absolute hero
Without the transplant… the doctors didn’t say how many years I might live, they didn’t want to. They did say I wouldn’t have a great quality of life. With my illness now, I have good days and bad days - they said that it would just get worse and it could turn into acute myeloid leukaemia (AML). Right now, I’m at a point where they want to get it done as soon as possible so it doesn’t get worse. That was a bit of a scare, and I just thought, ‘Well there’s no other option is there, I’m having the transplant.’
Anthony Nolan searched the register and found me a donor. The doctors had warned me (because I asked) that there was a chance there wouldn’t be a match. That was scary.
I didn’t know about Anthony Nolan at the time, so I looked them up and saw stories about people who had found donors, and people who hadn’t.
Luckily, I didn’t have to wait long to find out – a few weeks later I got the good news. That really put my mind at ease. From that moment, I’ve just been thinking about this person who’s potentially going to save my life. Whoever they are, they are my absolute hero.
I want to do anything I can to help others going through this
I’ve been telling everyone about the register and I’ve managed to get over 50 people from my friends and family to sign up. We did a fundraising day at work as well and we raised over £2,000. People keep sending pictures to me when they get their donor pack through or telling me they’ve sent off their swabs. I keep saying, ‘Not only will you save someone’s life, but it will bring you joy as well, knowing that you’ve done that for someone.’
A lot of people are scared that it will be really painful, so I keep telling them that, for the majority of donors, it’s like giving blood but you’re there for longer. At the end of the day, you might never get called – but get on the register just in case someone needs you. I couldn’t think of anything better to do. If I was able to donate, I would do it.
I wish I’d known about Anthony Nolan before I got sick, but I thought, ‘If I can’t donate, what else can I do to help more people find matches?’ – so that’s why I’m so keen to get involved.
I can raise money, I can raise awareness, I can get more people to sign up to the register, I can tell my story – anything I can do to help others going through this.
The whole experience so far – and I know I haven’t gone through the biggest part of it yet –it’s made me realise how much we take things for granted. In a weird way, I feel like this has made me a better person because it’s made me see the bigger picture.
So many people are going through this and I’d love to help people, by sharing my experience. Anyone who needs that bit of support, who feels like they’re on their own going through it. Everyone experiences things differently, but you can relate. So, if this helps just one person, I’ll be happy.
If you or someone you know is going through a stem cell transplant and would like some support, our Patient Services team are here to help. Visit anthonynolan.org/patients to see how we can support you.