The purpose of Teenage Cancer Trust is to support young people through the toughest of times. Kai, who was 23 when diagnosed with Acute Lymphoblastic Leukaemia , is a member of our Youth Advisory Group. We are very grateful to him for taking the time to share his story. We hope this gives you some insight into the impact of cancer on young people..
“Running up to being diagnosed I didn’t have any of the usual symptoms like lumps. I just started getting headaches, pain in my knees and I also began to struggle with bright sunshine. I knew something wasn’t right so I went to the doctors. They listened to my concerns, took some blood and I headed off to get ready for a family holiday.
The next day, we were driving to our caravan break when I got a call from my doctor. She asked me where I was and when I explained I was on my way to our holiday she replied: ‘You’re not. I need you to turn around and go to The Grange Hospital’.
We turned straight round around and set off for the department she gave me directions to – haematology. At that time, I didn’t know what that word even meant, so I wasn’t particularly worried. When we got there they put a band on my wrist, and the consultant said that they had found leukaemia. I didn’t know that meant I had cancer, but my partner Molly did and immediately started sobbing. In the space of a few hours I had gone from driving towards a lovely family break, to being admitted to hospital and being told I had cancer.
A few days later I was told that I could move to the Teenage Cancer Trust unit at the University Hospital of Wales in Cardiff. I stayed in for six weeks and met two other lads and we called ourselves the three musketeers. It really helped to be around them and just be able to talk. Not everybody likes talking about cancer, but I think it’s important. The atmosphere of the unit helped me massively too.
The second phase of treatment was really challenging. This part was done as an outpatient, but my immune system was so low that I’d catch infections and go into hospital for two or three weeks at a time. I also developed sepsis. On top of the infections and sepsis my intensive chemo gave me some horrible hallucinations, I also bad diarrhoea and was throwing up constantly. I then had full body radiation and a bone marrow transplant, with the bone marrow donated by my brother.
Christmas came and I wasn’t able to have a full meal or a drink and I seemed to be feeling worse rather than better. I was told in January 2024 that the cancer had mutated into a different type of leukaemia, Acute Myeloid Leukaemia.
There’s been complications throughout and it has been a real battle. As a result of the treatment, I’ve dropped around 30kg, and I’ve lost a lot of muscle. I have no cartilage in my knees and my bone density is low. To have all of this on top of cancer is hard. My body has been though a lot.
Anna, Teenage Cancer Trust’s Youth Support Coordinator, has been brilliant throughout. She’s given so much support not only to me but also to Molly. She always checks up on her. When I was staying in hospital, Anna would always come in to check up on me and see how I was. She’d also encourage me to go on the day unit and meet other people. I also remember crying when I relapsed and her hugging me.
I have two younger sisters, so I asked Anna if they could get any help. She arranged for someone to go round to our house to talk to them so they could ask any questions and get support. It’s good that they are able to express how they are feeling too as cancer affects the whole family.
I joined Teenage Cancer Trust’s Youth Advisory Group as I wanted to raise awareness of cancer but also make sure it’s not such a grey subject. Some people don’t want to ask about it as they don’t want to upset or offend you, but I think there’s sometimes an elephant in the room if they don’t ask. I like talking about it and I want to be able to help others talk about it too, which is why I am so pleased to be able to share all this with you.
Thank you for reading my story and for being interested in Teenage Cancer Trust. I hope you can help the charity carry on doing amazing things for young people.”