What Is It Like to Experience Cancer in Childhood, Adolescence or Young Adulthood?

Three people who have survived cancer in childhood or adolescence share their experiences and the challenges they have faced in the aftermath.

Listening to childhood and young adult cancer survivors is a key part of the European e-QuoL project, which aims to improve their quality of life through digital tools. Anne-Sophie Gresle and Kristen Thornton asked the survivors attending e-QuoL workshops in Spain and Norway if they would like to share their experiences. Yaiza, Saskia and Samuel generously accepted the challenge and share some of their most personal stories here.

Yaiza Cumelles, patient advocate: “The aftermath is invisible”

My name is Yaiza and when I was 21 years old I was diagnosed with lymphoma, a type of blood cancer.

At that moment my mind was overwhelmed, full of questions... Why me? Did I do this to myself? How could I have cancer at such a young age? Although I never found an answer, I faced the treatment with optimism and a strong desire to recover so that I could return to a 'normal life'.

I spent a lot of time in hospital, often admitted for treatment. I always felt like an outsider, like I didn't belong. I was always the youngest. My hospital roommates were my grandmother's age, and although I was the 'favourite' patient on the ward, the only time I really felt included was when I made eye contact with someone my own age in the waiting room. My illness became more complicated, and over the years I had to undergo several rounds of treatment until I finally had a bone marrow transplant that put my disease into remission.

I had to give up my studies and my job, and my friendships deteriorated to the point where many of my friends distanced themselves from me for good. I watched as everyone around me moved on with their lives - finding partners, having children, getting new jobs, travelling, partying - while all I did was lie sick in hospital.

Throughout this process, I deeply missed having a space where I could talk or find information about things beyond my medical diagnosis - things like sexuality, work, my fears for the future and what I could do to improve my quality of life. All the information I found online was written by and for doctors. Don't patients have a right to access this information too?

That's why, when my cancer went into remission, I realised that not only did I have nothing in common with my friends, but I hadn't experienced any of the things expected of a woman in her twenties. I had barely lived outside the hospital and felt incredibly alone throughout the whole process. I longed for information that went beyond cancer - especially about what comes after: the struggle to find a job, the social anxiety, the physical changes and the lasting effects of the disease.

My daily life after surviving aggressive lymphoma is difficult. I feel like I'm swimming against the current. The after-effects are invisible and I constantly feel the pressure to live as if nothing has happened.

Although cancer has taken a part of my life and I have spent more time surviving than really living, I have seen how technology has enabled patients to connect, support each other, access reliable and understandable information, and take greater control of our health. There may not yet be a cure for cancer, but I am happy to see that future generations will be increasingly empowered.

Saskia Degen: “The ‘after cancer’ matters”

My name is Saskia and I was diagnosed with Neuroblastoma at age 2.

For me, there’s no life before and after cancer, just the one after. For more than 20 years I thought this cancer couldn’t have any impact on my life because I was too young to remember anything.

But when I look back now, there’s a lot of physical issues, fear and anxiety actually caused by the cancer that really has an impact to my current life.

I really tried to push all the negative feelings away I felt for years. I said to myself “I have to be grateful”, “I’m not allowed to feel this, others are worse off”, etc.

After a psychological rock bottom I know now – cancer has an impact to everyone’s life a, because the “after cancer” matters and nothing will be the way it was before. At this point in my life I would have been grateful for an app that would have shown me wich late-effects cancer can have and how can I get in touch with Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS).

Every CAYACS deserves to get the most out of the life after cancer and today's technology can make this possible through access to information, help and connecting survivors.

Samuel Degen: “The diagnosis made me furious”

My name is Samuel and I was diagnosed with a Hodgkins lymphoma at age 19.

Looking back, at this point, it would have been invaluable to have anyone take the time, listen and explain the psychological impact of cancer, or any kind of resource to understand this, really. Be it an app, a platform to connect with survivors, or any other source of information.

Instead, the diagnosis made me furious. I was attending university, studying business at the time and all I wanted to do was party, quickly get my degree and go earn lots of money. Instead I was forced to undergo surgery and months of chemo and radio therapy. It made me sick, I lost my short-term memory and all my physical energy.

Truth being told I was also extremely scared and depressed. But I wouldn’t admit that to myself or anyone else. Nobody asked about it either. So I decided to be angry, ignore it and drink and do coke to a point where I no longer felt scared or frustrated.

This went on for a couple of months until I reached a tipping point and could no longer handle my self-denial. At first I tried to kill myself. That didn’t work – thankfully. So I had to face my reality. I could no longer attend university because my memory was screwed. Also I realized studying business and being surrounded by rich idiots full of themselves was nothing I wanted to waste my time with. So I ended up working for an advertising agency I had done an internship at before.

Although I did go through and another 10 years of depression, denial and substance abuse, until I finally got treated for my mental issues I did manage to have a rather interesting career in advertising.

Today I am managing partner of an agency, I have been entirely sober for 9 years and most importantly I am a husband and father of a wonderful little boy.

So, no matter how fucked up things seem, my lesson is: There is help and nobody should be afraid or too proud to ask for help. There is plenty of good waiting. Or so, I guess.