A stem cell transplant at 15 – Kate’s story

September 20, 2018
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Kate was 15 years old when she received a stem cell transplant to treat her aplastic anaemia. After missing over a year of school, she’s now excited to be heading to university. Kate spoke to Caroline in Patient Services about her experience of having a transplant as a teenager, the support she has found helpful, and her advice to other young people going through transplant.

You were 15 when you had your transplant. Did you feel like you fully understood what a transplant was and what recovery could be like?

My parents were very clear in saying that this was my choice, it was my decision to make, it was my body. But it was a no-brainer really.

At 15, you’re suddenly thrown into a very adult environment where the only other young people were also going through really traumatic things. I was primarily communicating with adults. It’s quite a large concept to try and understand when you’re that young. You’re making major life decisions.

The best way for me to deal with everything was to communicate with my dad. I’d get the doctors to speak to him, and he would repeat information back to me in our own way. He was very straightforward and optimistic in the way he dealt with it. It felt more manageable that way.

Who else supported you during your transplant?

Before entering that room, it quickly became apparent to me that I wanted my transplant to be a completely separate part of my life. I didn’t really want to bring other family members or my friends into it, because it’s a very personal thing to go through.

But my mum, dad and sister were there the whole time - we were always together as a close family unit, and that’s how I got through it. It meant that I didn’t feel like it was ‘my’ bone marrow transplant, it became ‘our’ bone marrow transplant, and we did it together.

How did you find your isolation period? What helped you through that time?

That’s where my friends were really lovely. My best friend’s family would send me letters every day, and my mum and sister collected cards from everyone we knew. They’d give me one of those a day so it was always like I was communicating with people. We put them up all over my room to decorate it so it felt more homely.

I made it an environment that I was comfortable in by keeping it clean and bright. As soon as you feel like it’s your own space, it’s so much easier to deal with. I tried not to see it as a place where I was stuck or trapped.

Did your treatment affect your body image and how you saw yourself?

When you’re 15, your body’s changing anyway. But if you’re going through a transplant, your body is changing without your autonomy. You lose your identity somewhat, and I definitely felt that by losing my hair I was stripped of my femininity without having a choice. I struggled with not necessarily body image, but my identity within my body.

It’s about being prepared and fully understanding the situation that you’re going into. I went in to hospital with lots of hats and a wig and planned how I was going to grow my hair back. I took a picture every day at the end of each month after coming out of hospital to measure how much it had grown. I made it my own journey and formed a new relationship and identity with my body to the one I had previously.

If you start to view the body that you went into the transplant with as an unhealthy thing that was doing damage to you and put you in this position, then the body that you’re coming out with, even though it’s new and doesn’t necessarily feel like your own, it’s working and has gone through this big battle.

I almost viewed my hair as a battle scar and came to love it because it’s completely different and new now. I think it’s about getting your head around the new identity that you’ve been given and then learning to love it again.

Was your fertility discussed at any point?

My consultant said that my fertility may be affected by the chemotherapy, and asked if I would like to talk to someone about it at that point. My 15-year-old self just thought ‘I’m losing my hair. I’m going to park that for now and deal with it a bit later’.

Last year, it hit me that I hadn’t really thought about it. I’m not ready to cross that bridge at 18, but when I do I’ll be talking to my doctors again. It’s not something that I can control, but it is something that I can understand.

When you finally got to go home, what was that like?

It was weird because I’d become adjusted to this new home. I’d spent all this time with my family and felt safe and protected. You’re in a place where if you feel ill you can ask a million questions to the experts. But I was so excited – I hadn’t been in my own bed for six weeks.

I was definitely nervous because I was going to have to face a lot of people with a lot of questions. I looked and felt completely different - it was about readjusting to this.

How did you find returning to school?

I have an amazing school who work closely with Anthony Nolan now. They filtered me back in, and I had such good friends. You take for granted your access to education when you’re younger. I love learning and I’m so excited to go to university, but I still feel robbed that I didn’t get to be in Year 10 and some of Year 11. It was a monumental time in my life to miss and I will always be sad about that.

I grew in confidence tenfold when I came back - I was a bit more fearless. After your health has been risked, it can make you so much stronger as a person. All I was concerned with was learning because I’d missed out on so much. I didn’t want to go out to parties or drink because I just wanted to be in school and catch up and be healthy. I think I’m still negotiating that part of my life.

What has been the emotional impact of your transplant?

Before my transplant I was very quiet and shy and not as confident in myself. Now, I’m so much more positive and confident, and I really value choice and autonomy. I wasn’t in control of what was happening to my body, but now I have that autonomy back I’m less scared to make decisions.

Emotionally, it changed my whole outlook of how I behave. It’s also definitely left me with emotional scars that are always going to be there. You deal with them every once in a while. There is a lot of pressure on you to be positive, to get through it and be really brave. But it’s ok to feel that emotion.

Kate and her dad

Were you offered any psychological support during or after your transplant?

I was but I didn’t take it because I had such a good relationship with my mum and dad that I felt I didn’t really need another outlet for communicating. But if you don’t have that in your life, I would really recommend it because the way I got through it was communication - being confident in how I was feeling and sharing that with people around me. Having an outlet is really important.

How’s your physical recovery been?

The one thing you maybe don’t realise is that you are lying down in bed for six weeks and your muscles relax. You have to build yourself back up again and you can’t have high expectations that you can go straight back into your life as you were before. I live about a mile away from school and so my mum would drop me there and I’d walk home with my friends when I wasn’t allowed to attend.

Slowly I built that up, then went back to ballet and dancing and all the things I was doing before. You have to give your body time to recover because it’s still in recovery for such a long time after the transplant. It’s mentally getting your head around the fact that you’re not the person you were before, and that’s ok.

You contributed to the production of our ‘Young Person’s Guide to the Stem Cell Transplant Journey’. Do you have any tips or advice for young people going through transplant?

It’s important not to be defined by your condition. I think it becomes your whole life while you’re going through it. Even afterwards, when you’re being reintroduced into the real world, you feel like you are your illness. It’s part of your identity now, but it’s not all of you.

View it as something you have conquered or are conquering rather than something that’s happened to you. That will help with being able to be at peace with everything and live life positively post-transplant. I wouldn’t take back any of my experience because it’s made me who I am.

You’re off to university in September. How does it feel given all you’ve been through in the last few years?

I’ve been really emotional about it this week as it’s been results week. I came out of hospital and went straight back into my GCSEs, so I spent all my time working really hard throughout summer. I wanted to get back academically to the place that I was quicker than I did physically or mentally.

I got good GCSE results and the fact I went to sixth form is one of my proudest achievements. To be going to a good university now is overwhelming.