I went through 20 months of intensive chemotherapy

Being diagnosed with acute lymphoblastic leukaemia 

Before I was diagnosed with cancer, I was studying for my GCSEs. In my spare time, I enjoyed gaming, I was into cars, and graphic design. I was good at athletics and rugby.

I started to get very out of breath during sports and then just doing day-to-day activities. My body was aching all of the time, my limbs were sore, I was exhausted and losing weight. It got worse and worse, but when I went to the doctors, they thought that I just had a bad cold. I was getting depressed  feeling so ill all of the time.

It went on for about six weeks and then I started to get a nasty, blotchy rash. It looked like an absolute horror show. It got so bad that I went to my local hospital.

My parents and my grandparents were there when I was told that I had Acute Lymphoblastic Leukaemia. I was only 15 and, in that moment, it didn’t sink in. I was transferred by ambulance from my local hospital to the Teenage Cancer Trust unit at the Royal Marsden. It was not until I was left by myself and I went to bed around 1am that I cried.

Treatment and Teenage Cancer Trust’s unit 

The care I had from Teenage Cancer Trust after I was diagnosed was amazing and so comprehensive. I met the nurses and their Youth Support Coordinator very quickly and they answered any questions I had.

I had 20 months of intensive chemo and had a tonne of side effects. You name it, I had it. I suffered from nausea and dry skin. I had fatigue, a lack of stamina and a lack of strength. My appetite fluctuated and when I was on steroids it went up and other times it went down.

Being on the Teenage Cancer Trust unit definitely helped as there were lots of things to distract me. There was a great chill out room where I could watch TV and movies. There was a games room and being able to do gaming definitely helped pass the time. It was also a form of escapism as when you’re focusing on a racing game or shooting aliens, you’re not thinking about being in hospital and all of the things you are missing out on, like GCSEs or going to prom.

I was treated around other people my age, so I had them to chat with. I made a few friends and they understood what I was going through. My other friends just didn’t get it.

Teenage Cancer Trust’s Youth Support Coordinator was great too and he organised things like movie nights and pizza nights. The food was pretty good too as the hospital have their own chefs, which is a bonus.

Relapse and maintenance treatment

I started maintenance treatment a few months before my exams. I was taking chemo tablets at home every day and only having to go to hospital once a month, so it was the first time that I was able to go back to school properly. I had extra tutoring and studied the best I could. The school was great, and I was allowed extra time in my exams. I was quite book smart before my diagnosis, so luckily, I hadn’t fallen too far behind and I got pretty good results.

I relapsed at the end of 2016. It was probably the worst and most traumatic time of my life. I just thought: When is this going to end? I’d already been through two and a half years of treatment, and it felt pretty endless. I was so dejected.

I was in ICU as my port was infected and I was in a coma for a couple of weeks. I had to wait until I was well enough for a stem cell transplant, and I had that in April 2017. The stem cell transplant in itself was pretty anticlimactic – one syringe and it was done – but the aftermath was horrendous. I had Graft Vs Host where my cells were trying to attack the new cells. I had severe skin issues and my skin was peeling off.

I was in hospital for 104 days and in bed all of the time, so I had to learn how to walk again afterwards. I had physio and even walking to the end of the room and back felt like a huge challenge. I used to dread physio, but it got me up and walking again. My advice to other people in that situation is to remember that it does get better. It is incredibly hard and most people won’t understand what you are going through, but if you get through that you will get through anything.

Post-treatment 

My fitness still isn’t what it was and I’m not able to play rugby or do athletics. I just don’t have the stamina. In 2021 I had more physio which is more in line with what the general public would have. I did things like going on a treadmill and slowly ramping up the speed, doing bleep tests and working with light weights. It helped me build myself up and get some stamina back.

Teenage Cancer Trust have been absolutely amazing throughout and have offered me so much support. Sadly, I didn’t get as much support from family and friends. Some people didn’t know how to handle it and either stopped talking to me or were unhelpful. The friends who didn’t drift away have really had my back though.

Work with Royal Marsden 

I’m now on Royal Marsden’s Youth Forum. We provide feedback on the care that children and young adults receive and feed into new initiatives. It’s great to be able to help improve the care that they receive.

I went back to an office job once I had recovered from my stem cell transplant, but even the commute wore me out. I was made redundant just before Covid and I decided to start my own graphic design business. This allows me to work my own hours which has been so helpful and it’s also something I’m really passionate about, so I want to get out of bed and start work each day. I’ve been doing graphic design as a hobby for years and when I was much younger, I combined my passion for graphic design with my passion for cars and designed a lot of wraps for race cars. After having cancer, I self-taught myself even more skills and I’m enjoying the work.