The Teenage Cancer Trust unit became my sanctuary. When I first arrived on their ward from the intensive care unit (ICU), I felt overwhelming relief. Gone were the endless machine beeps and harsh lights; instead, the ward had an atmosphere that felt far more like home. The staff became my lifeline, understanding both the medical and emotional toll. Padma, the youth support coordinator, organised activities like pizza nights and even a music session that brought out the real “me”, which my parents hadn’t seen in months. In a space designed for people my age, I felt seen and valued.
Isolation was one of the hardest parts. For days, I barely saw anyone other than a handful of nurses. At times, I felt like I was fading, not just physically, but also mentally. The hospital psychologist became essential to help me face the uncertainty and understand that my emotions were valid. Having someone outside of my family to talk to lifted a weight off my shoulders, especially as I was worried about burdening my parents.
I’ve had to come to terms with permanent changes, like needing lifelong immunoglobulin top-ups. My doctors explained that the CAR T-cells had eliminated not only cancerous B cells but all B cells. Some side-effects are ongoing: I have a low number of neutrophils, which makes infection an ever-present risk. At times, it feels like a hidden world that people don’t understand – cancer in young adults isn’t something people expect.
I was fortunate to receive incredible care and support from my family and friends. My parents took turns staying with me in the hospital, which kept me from getting fed up with either of them, and my younger brother visited most days. Friends brought games to cheer me up and distracted me with memories of primary school, as well as jokes, and it was just great to be normal again.
There were physical challenges that I hadn’t anticipated. I was warned that fertility might be impacted by my treatment, particularly because I was placed on the high-risk pathway. I haven’t fully processed this yet. There have been so many more immediate things to worry about.
Physically, my body endured far more than I ever imagined it would. At the start of my treatment, needles and cannulas didn’t bother me, but after having my blood tested twice daily for weeks and being cannulated more times than I can count, I began to struggle with them. I’ve also had various lines placed (tubes placed under the skin to help deliver treatments) – a neckline, femoral line, PICC line and Hickman line – all of which have left their mark.
Throughout, I tried to remain positive, but constantly receiving bad news (the cancer was still present after bone marrow biopsies) was incredibly hard. My psychologist and clinical nurse specialist were my anchors, helping me process the roller coaster of emotions. To this day, I find bone marrow biopsy results clinics challenging as I’ve come to expect bad news.
Yet, despite all the emotional and physical wear, there were small things that kept me going. Looking out of the hospital window each morning, seeing the sunrise, or feeling a breeze on my face were quiet comforts that reminded me that I was still here.
When Christmas came, I was desperate to be home, but a seizure forced me back into hospital. It was a crushing blow to learn that my leukaemia had spread to my spinal fluid. I spent the holiday season in isolation, my only company being the youth support coordinator and nurse who were allowed to visit despite the restrictions. They brought so much light to a dark time.
My love of nature encouraged me to get out every day, even if it was only to a balcony overlooking the hospital garden. Gradually, I managed to walk farther, and that progress lifted my spirits.
Since finishing active cancer treatment in May this year, I still have to go to hospital twice a month, so it’s not all over. But I’ve been rebuilding my life. I’ve started my final year of sixth form, reconnecting with friends and getting back to the activities that I once loved, such as cycling and walking in the countryside.
