Teenager Jessica-Jayde Allen shares her experience having been diagnosed with cancer at just 15 years old. Here is her story…
The Royal Alexandra Children’s Hospital (the Alex) in Brighton treats young people up to the age of 19. Being a teenager with a long term or life threatening illness can feel very isolating and frightening – at Rockinghorse we raise money to support teenage patients through projects such as the specially designated Teenage Rooms (located on every ward) and the Teenage Support Group.
In her own words, teenager Jess shares her story about how it felt to be diagnosed with a rare form of cancer at just 15 years old, and her experience as a teenage patient at the Alex:
“I was living life as a normal teenage girl, going to school and preparing for my GCSE's. I was due to enrol at college and I used to argue with my siblings non-stop, but from the moment I was diagnosed, everything changed… Whilst moving house, I lifted a heavy box and got an awful pain around my collar bone and in my chest. My mum said I had probably just pulled a muscle so I thought nothing of it, however, days went by and it started to get worse.
I went for a routine check-up at the doctors where my GP noticed blue veins and swelling around a lump. He found another lump in the top of my neck and two days later I was in the hospital for an x-ray and an ultrasound. After that, the nightmare began as I was admitted to the Alex and it was confirmed. "It's cancer." I sat there…shocked….confused…stunned in to silence. No tears came. No words either, just disbelief. It took two words to make me feel as if the world was against me. Two words to change everything.
I had been diagnosed with a rare form of cancer called Ewing Sarcoma. It started at the top of my neck and finished just below my left breast. It had already collapsed my left lung and three days later, I started my fight for life. I had a biopsy of the tumour, different types of bone marrow tests, fluid taken off of my lung and a Hickman line fitted. Chemotherapy started almost straight away.
Telling people was very hard. I didn't want to accept the situation, let alone share it. How do you explain to someone that you have cancer? It sounds like a simple thing to do, but once others believe it then you also have to. My closest friends were so supportive but I found it really difficult to let them see me the way I was. Dealing with school was very tough and having the time to even think about my GCSE's and go out and socialise wasn't easy. I wasn’t able to concentrate and I couldn't learn anything new with this massive problem filling every inch of my head.
I was initially given a very intense course of chemo which made me feel weak, sick and very tired. I would be in hospital for days at a time, attached to a drip. When I actually got to go home, infections would kick in and I’d be admitted to my local hospital where I would spend the next week on IV antibiotics to fight the viruses I was too weak to fight on my own. I started to lose my hair, followed by my eyelashes, then my eyebrows. That was my life for seven months.
During my time at the Alex, I was determined to keep going. I'd get up, and paint, play or draw with the children too ill to get out of bed. It's so rewarding when you manage to find that smile underneath all of the pain that they're going through. I've made so many friends through such a tough journey, but lost so many. Back in April 2012, Rockinghorse opened three Teenage Rooms to provide young patients with an age appropriate space away from medical procedures. I was in the hospital on the day the new rooms were launched by celebrity visitors and hip-hop duo Rizzle Kicks, I was so excited to meet them! The Teenage Rooms were invaluable to me as a patient at the Alex as I could get away from the ward and socialise with patients in my age group, most of whom understood completely what I was going through.
Over a year later, I was told that I was in remission and I now have scans every two months. I never thought I could adjust to this situation, but I have. To me, it's normal that I've had cancer. It’s normal to me that I've been close to death. The experience has taught me many things. I've learnt that life is tough, no one can deny that. Some people have a bumpier ride than others, but sometimes we have to be grateful that we are here for the ride. I've learnt many of life's lessons that will stay with me forever.”