Terence's Story

Terence was diagnosed with Leukemia at the age of 16 and transferred to a Teenage Cancer Trust ward in Leeds. This is Terence’s story. 

Young man

I was just an average kid. I’d just left high school. I was about 16. I was relatively fit and well. Nothing special really. I’d planned, after school, to join the Army. That was my lifelong goal. At 16, I left school and went down to the careers office and applied. During that time, I’d started to get a pain in my knee. It was just dismissed at first as growing pains because I was only 16. So, I persevered. I think it was about 6-8 weeks later I decided to go to the GP just to check that nothing sinister was going on. They told me to take some pain killers but otherwise to get on with it. Time went by and the pain got worse. I went back a second time about 8 weeks later. They said they would run some blood tests to see if I had arthritis. By the time it came to the third visit I was really unwell. I was very pale. I’d lost a lot of weight. I was very short of breath. The pain was so bad it had pretty much stopped me from doing anything. There were also lumps around my head. The Doctor said, ‘we’ve done your blood tests. You’re a bit anemic. There’s not much we can do. We’ll give you an iron supplement and see how you go’.

Not happy with what the GP suggested, my mum took me from the doctors to A&E. The pain had started to spread from my knee to my pelvic area. I couldn’t think about anything but the pain. I spent the next 5 days undergoing tests trying to figure out what it was. I never expected them to tell me that it was cancer. Initially, I was scared. I started crying with my mum. I just broke down. They said it was bone cancer, and that it wasn’t treatable. All that was running around my mind was, this is terminal. I’m going to die. I just wanted to run away. I was the youngest person on the ward. There were certain visiting hours and then I was alone at night time. I was in a room full of strangers. When I got transferred to the Teenage Cancer Trust ward, everyone was so welcoming and warm and nice. They gave me a private room. I had my own bathroom and there was Sky TV and a Play Station. There was a sofa bed and they allowed one of my family members to stay over at night. I’d gone from a cold and lonely hospital to this lovely facilitating unit. It was wonderful.

Once I got transferred to the Teenage Cancer Trust ward and met my consultant, she wanted to do some further tests to rule out the chance of it being Leukemia. It turns out it was Leukemia, which made it treatable. The lumps on my head were tumours and the pelvic pain was where the cancer had eaten away at my bone – I was the second person in the world to ever be diagnosed with this type of Leukemia which attacks the bones. There were tumours running all the way down my spine, crushing my spinal cord. I had one round of radiotherapy, then I was put on high dose steroids to target the tumours. I spent the next three months just getting treated. I couldn’t walk. I was bed-bound. I was pushed around in a wheelchair by my mum. It was a struggle. I wasn’t able to walk or put any weight through my legs for about a year.
All my family has a good relationship so I had a good support network but Teenage Cancer Trust also offer great support. They encourage you to talk to each other and offer group sessions where you can talk or do activities. They do movie nights and pizza nights where they order pizzas from Domino’s. There’s a day room where they have a big TV, Play Station, DVDs, books and a juke box, and you can just go there to socialise and chat with your friends. They offer guitar lessons, lessons on the computer, and drawing activities. I was in there for about three months for the initial treatment but went back a few times when I got infections and became unwell. All told, the treatment took three years. Then it took me about a year before I could even stand up, literally. Then just getting off the bed and standing up was all aided. I had to have a zimmer frame at the start and then crutches. It was a long process.

For two years I was seeing a physio and trying to get back to walking with the crutches and zimmer frame, get more mobile and get my independence back. It took me a good three or four years to be steady on my feet. I’m five years off the treatment now and I’ve never been more fit in my life. I can do more things now than I could do before I got cancer. Teenage Cancer Trust has made a lot of that happen. They’ve given me some amazing experiences. I’ve met a lot of incredible people through the charity. I often go back to the ward to visit the nurses. Although a lot of them have moved on now, I still like to keep in touch in when I can. I know it’s a shame everyone is there because they have cancer but it’s also a shame that everyone can’t experience the community because it’s a wonderful thing. It took a while for me to get my head around it. For a long time, I felt very bitter that I couldn’t achieve my dreams. Despite passing all of the physical tests, the Army won’t let me in because of my medical history. For a while, I was angry that my dream career and my teenage years had been taken away from me through no fault of my own. I was very angry at the world. It took me a long time to accept it and start to look at the positives.

Teenage Cancer Trust speaker

Now, I feel thankful for it really, for the experience, because it’s given me a better outlook on life. I’m thankful for the relationships and the environment that was provided by Teenage Cancer Trust. Looking to the future, because fitness has been such a massive part of my recovery (not only physically but for my mental wellbeing), I’d like to eventually work with people like me who are having treatment or have finished treatment. My end goal now is to be a personal trainer for cancer patients. I want to share the insights I’ve gained through the experiences I’ve had. I want to mentor them and give them the tools that I didn’t have. The Teenage Cancer Trust ward is like a home from home. Everything you need is there for you. It’s a safe place to feel you can express yourself in any way you need. It’s unbelievable really. The specialist nurses are all provided through Teenage Cancer Trust and they’re the ones that make you feel safe. It’s the little things that people don’t see. People can look through you when you have cancer. It’s like you’re not there. The nurses at Teenage Cancer Trust make you feel human again. The service they offer is world-class. You won’t find it anywhere else and the only way they can continue to keep giving that service is through donations.

Thanks for sharing your story with the Omaze community, Terence.

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