Grace's story
Grace was diagnosed with neuroblastoma two weeks after her 16th birthday in May 2021. Now 18, she has recently finished treatment and is training to be a paediatric nurse. Grace shares her story to mark Teenage And Young Adult Cancer Awareness Month…
SYMPTOMS & DIAGNOSIS
A few months before my diagnosis, I had noticed that I could feel a hard lump when I pressed on my stomach. It was not visible or painful, just a little weird. I assumed it was nothing serious, maybe a small hernia, and largely ignored it.
About five months later, I started to feel really unwell and was experiencing pain around my chest and ribs. I went to see the GP who said I had an inflammation and suggested I take some ibuprofen. But the pain got worse.
Eventually, I was in agony. I felt sick and the pain in my chest and ribs was excruciating. My mum took me to the Out Of Hours clinic. The doctor there felt the lump in my stomach and told me to make an appointment with my GP for the following day. I was sent home with some Gaviscon.
The next morning, I went to the GP and was seen by a medical student who thankfully gave me a very thorough examination. On feeling the lump in my stomach, they called the doctor into the room and I was sent to hospital for a scan.
“It was a huge shock to hear the word cancer.”
I ended up spending several days in hospital while various tests were carried out, including scans, blood tests and urine tests. A few days after I was admitted, I was visited by a haematologist who told me that I had cancer. At that point, he suspected it was lymphoma.
It was a huge shock to hear those words. I was not expecting it at all. I just thought I had a simple infection and was expecting to be sent home with a course of antibiotics. It didn’t feel real to me. I mean, at aged 16, you don’t expect to receive a cancer diagnosis. You just don’t think about children getting cancer. I felt really frightened.
I was sent for a biopsy which was an incredibly traumatic experience and was subsequently moved on to a children’s ward. When my biopsy results were back, I was told that my cancer was, in fact, neuroblastoma. I had no clue what that meant. My only awareness of neuroblastoma was that I knew Bradley Lowery had been diagnosed with it.
“Google was my own worst enemy...”
My disease was a Stage 2 High Risk Neuroblastoma. My primary tumour was in my abdomen, but the cancer had started to spread to my chest area.
I spent that first night awake all night, Googling everything. But Google turned out to be my own worst enemy. It was terrifying to read about neuroblastoma and its bleak survival rates.
Despite what I had read online, the medical team were always optimistic and always spoke about curing me, so I started my treatment feeling hopeful.
I was told I would be on chemo, then I would need a stem cell transplant, followed by surgery to remove my tumour, then radiotherapy and immunotherapy. It would all take around 18 months. I started Rapid COJEC treatment immediately and took my last IV infusion in September. I never needed radiotherapy.
THE FUTURE LOOKS BRIGHT…
It was a very difficult time, particularly as Covid rules were still in place to some degree. My mum and dad could visit me in hospital, but everyone still had to wear masks and I was not allowed any other visitors. The isolation was tough, as I was not allowed to even leave my room. I could only catch up with other family members and friends on FaceTime.
Currently, I am still being regularly monitored, with scans every three months. I am still taking a daily targeted therapy drug. But I feel optimistic about the future and don’t feel scared any more. I had always believed that everything would be fine for me. Now, I just look back and can say ‘I’ve been there, I’ve done it’ and I can move on and look forward to the future.
“I always wanted to be a nurse, but the care I received while in hospital has inspired me even more.”
Of course, there is no doubt that it was a very tough time, both mentally and physically. I had amazing support from my parents, family and friends. But I missed out on a lot of things that my peers were doing at the time. I missed a whole year of school which meant I had a lot of catching up to do and this really affected me. But I managed to achieve my Highers, completing them in just one year, and am now at university, studying Child Nursing.
I have always loved children and had always pictured myself as a nurse. But having spent so many months in hospital and having received such wonderful care from the nurses around me, I know exactly what impact you can make on the life of a sick child. My whole experience made me want to go into paediatric nursing even more. I should qualify in three years time and hope to be able to give back the incredible care I received to other children facing a similar situation.
TIPS FOR OTHER TEENS FACING CANCER
It is very rare to get neuroblastoma as a teen. It’s a cancer that usually affects very young children. But to anyone facing a similar diagnosis in their teens, I would say “Don’t overthink it. Whatever happens, happens. You just need to believe that you are stronger than it and that you can beat it”.
Our sincere thanks to Grace for sharing her story. Search #TYACAM to follow Teenage and Young Adult Cancer Awareness Month to find out how the charities are raising awareness and how you can get involved this April.
If you'd like to help fund vital research into this rare and often aggressive cancer, please donate today. Thank you.
