“What changed when I was diagnosed with cancer”

Cancers start when tiny cells change in ways they’re not supposed to. They can change entire lives in ways no one expects. 

For teenagers and young adults, whose lives are already in flux, cancer can be especially complex. Asha, Zaid, Taylor and Eilidh were all in school or university when they were diagnosed. There was no curriculum to prepare them for what was coming. 

To mark Teenage and Young Adult Cancer Awareness Month, we asked them to look back on what they’ve been through and tell us about the actual changes, big and small, that follow a lifechanging diagnosis. 

Their stories show why it’s so important for research to focus on what makes cancer different for people who don’t fit neatly into categories like ‘child’ and ‘adult’.

You can find out more about how we’re working to help young people in our teenage and young adult cancers research roundup.

Asha’s story: “Everything changed”

Asha, who’s now 17, was diagnosed with stage 4 Hodgkin lymphoma in March 2024, when she was 16 years old. She received six months of chemotherapy (escalated BEACOPDac).  

Everything changed – everything. 

The things I could do changed. I couldn’t go out day to day in case I got an infection, and the treatment made me too tired sometimes. 

My diary changed, and the chemotherapy took over. Days at the hospital could last from 6am to 11pm, so I had to cancel everything on that day and the next, as well as big things like a holiday with friends. 

My appetite changed, and on some days around my treatment I wouldn’t be able to eat. I couldn’t even shower for six months because of the PICC line in my arm. I had to have baths with it covered up.  

But my attitude changed too. I have more appreciation of life and what I have. I realised I take so much for granted, but also that if I want something, I have to go for it. 

Zaid’s story: “Nothing can really prepare you”

Zaid, 16, was diagnosed with acute lymphoblastic leukaemia (ALL) in July 2023, aged 14. He has been part of our AllTogether-1 clinical trial and is due to finish treatment in the summer.

It had never entered my mind it would be cancer. 

I was starting to get more independence as a 14-year-old, but I had some back pain and I was getting tired. I had some tests, but the doctors weren’t sure initially. When I was diagnosed, it was such a shock. 

Before, I was thinking about school and football, and then suddenly I was worrying about my health and the long-term impact. I didn’t know if I would ever play football again. 

Then, when the treatment started, it changed my day-to-day life. It felt like such a massive step back. 

Instead of me becoming more independent, my parents were keeping an eye on me all the time. They were worried about me, and I was so tired. I didn’t know how to deal with the sickness and pain. After one of the treatments, dexomethotrexate, I would have no strength in my legs – I couldn’t run or jump. 

One thing that didn’t change was how my friends treated me – they were normal and have been really supportive. I’ve been catching up on school and getting back to some football training recently too.  

I’m due to finish treatment in the summer and it feels like it’s getting closer. And then I’ll be going into sixth form. It will be a fresh start. 

Taylor’s story: “My perspective has changed” 

Taylor, 23, was diagnosed with a stage 2 ependymoma, a rare type of cancer that starts from cells in the brain and spinal cord in April 2023. He was 21 years old at the time. 

Before I was diagnosed, my fitness was a big part of my life and my sense of myself. I was boxing and running – I could do 5k in 17 minutes.  

That all changed. 

In the last year of university, doctors found tumours on my spine and brain. I had five brain surgeries, one spine operation and six weeks of radiotherapy to treat them.  

There was a fear that came from my diagnosis, too. I would always say “I’m fine”, but you just don’t know. I still have the tumours now, which is hard to comprehend.

But my perspective has changed. I think this experience has strengthened me – it’s given me a mental toughness. I’ve pivoted to new things and found new targets. I’m interested in bodybuilding now, still in the gym five days a week. 

I don’t talk about my experience too much, as I have to move on, but I do want to share it. I’m doing well and I think my story can give others the hope of seeing a positive outcome. During treatment, I needed stories like this to know it was possible. 

Eilidh’s story: “I have been given a second chance” 

Eilidh, 23, was diagnosed with acute lymphoblastic leukaemia in 2016, when she was 14 years old. During her recovery from ALL, she was diagnosed with thyroid cancer.  

I didn’t realise how much my life would change when I was diagnosed with leukaemia. 

I needed aggressive chemo, which meant I had to be admitted to hospital, but it felt more like being put in a bubble. I was confined to four hospital walls – the constant beeping of drip stands – for three years. The hospital staff became my second family. 

Quite early on, I developed an adverse reaction to the chemotherapy, and they had to move me to intensive care to help manage the pain. 

Things deteriorated quickly once I was there. I remember feeling like I was living in my body but not able to control it. After that, everything goes dark. 

I was put into an induced coma. The chemotherapy had killed the cancer, but the collateral damage ended up almost killing me. When I woke up two months later, all I could do was blink. 

I couldn’t believe it. How could I have two types of cancer at once? After all I’d been through, how could this be happening again? 

As soon as I took my last chemo pills for leukaemia, I began the process of tackling my second cancer. Thankfully, the surgery went smoothly. It was the only part of my treatment that did. I was in the hospital for three days and it was over.

All the way through, my end goal was just to get better, to go into remission and ring the end of treatment bell. It had taken all my energy to stay positive and continue to fight, but I’d done it. 

But then, about a month later, I felt that I’d lost myself. 

For years, my world had revolved around the fact I had cancer. I’d spent so long in that bubble, fighting to survive, that when I became cancer free, I felt unrecognisable. Cancer had become my whole being. Without it, I was nothing. 

I still felt like the 14-year-old who walked onto the ward, except I was now 17. I hadn’t changed the way anyone else had. My peers had worked through school, developed friendships and relationships, and really discovered themselves. But me? I’d been watching life from a window. I was so confused as to who I was and who I was meant to be. 

And, before cancer, I’d had 14 years of full mobility; of walking without even thinking about it. Now I’ve realised how inaccessible the world is. I lost so much independence and freedom that I had taken for granted. 

It stings a little to know that this chapter isn’t fully over yet, but I’m extremely proud of how far I’ve come. I feel like all the tough days, hard recovery and overwhelming fear was worth it, because I’ve been given a second chance at life. I’m excited for my future and look forward to living out the rest of my life, happy and healthy. 

Our focus on teenage and young adult cancers

The chemotherapy side effects Eilidh experienced are extremely rare. Doctors at her hospital in Glasgow had to look back through 25 years of records to find something similar.

Even so, her story shows why we need to keep finding out more about the biological factors that make teenage and young adult cancers, and each person who is diagnosed, unique. 

Earlier this year, we launched the BIOINFORM project, which is bringing together high-tech tools and 30 years of high-quality data from more than 20,000 patients to investigate differences and personalise treatments for people like Eilidh who are are diagnosed with acute lymphoblastic or acute myeloid leukaemia. 

BIOINFORM is building on a legacy of research that has helped prevent around 13,100 cancer deaths in teenagers and young adults in the UK since the 1970s. Like all the projects we’ve discussed in this article, it will help us keep pushing that number higher, while making sure the lives we save aren’t shaped by long-term side effects. 

You can find out more in our research roundup.