Listening to Childhood and Young Adult Cancer Survivors: Yaiza Cumelles – ‘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.