Chloe's story
Chloe was diagnosed with stage 3 neuroblastoma in 2010 when she was fifteen years old. Six years later she qualified as a children’s nurse, now works on a paediatric ward and has even published a book about her experience! Chloe has shared her amazing story as part of Teenage and Young Adult Cancer Awareness Month.
Symptoms and diagnosis
“A mass was found in my abdomen. I was 15 years old and I was confused, I didn’t really know what the term meant. I didn’t link it to cancer.”
Chloe was 15 when she was diagnosed with neuroblastoma
“I struggled for a while with various non-specific symptoms, including fatigue, dizziness, nausea, and pain, which was put down to chronic fatigue syndrome. However, during year 11 as I was starting to prepare for my GCSE’s, I developed an intermittent excruciating stabbing pain in my left side. We assumed this pain was a reoccurring kidney issue, which I had surgery for three years earlier. This prompted my mum to book me a GP appointment.
At the appointment the GP palpated my abdomen and felt something unusual, so referred me for an ultrasound scan ‘just to be safe’ and gave the impression it wasn’t anything to be concerned about. This meant that we were not prepared for what was to come. During the ultrasound scan the sonographers face changed. A mass was found in my abdomen. I was 15 years old and I was confused, I didn’t really know what the term meant. I didn’t link it to cancer. However, I could sense the seriousness of it and the urgency, as we were told I needed to see my GP the same day. The GP said I needed to see a paediatrician urgently and looked into my eyes and said, “Everything will be ok”. I thought to myself, what does he mean by that? What is he too afraid to say?
I was referred to Leicester Royal Infirmary where I had numerous tests and we got the devastating news that I had stage 3 paraspinal neuroblastoma, which was poorly differentiated and had adverse biology.
Treatment and side effects
“I was terrified to have such major surgery, with the prospect of losing the ability to walk, the surgeons not being able to remove it all and the impact of this on my survival. ”
As neuroblastoma is most common in children under five, the consultant had to consult other specialists to decide on my treatment protocol. It was decided that I would require the high-risk protocol which included Rapid COJEC chemotherapy (eight cycles), surgery, high dose chemotherapy and autologous stem cell rescue, radiotherapy and differentiation therapy.
However, during reassessment scans partway through the induction chemotherapy, we were told that the tumour had not shrunk. The surgery was brought forward, but as the tumour was still large, it made the surgery more complex. The tumour was very close to nerve structures and was in my psoas muscle (a long muscle in my back), so removing it all would affect my ability to walk. I was terrified to have such major surgery, with the prospect of losing the ability to walk, the surgeons not being able to remove it all and the impact of this on my survival.
During the surgery they only managed to remove half of the mass. When they were trying to achieve a more extensive resection my leg moved, suggesting the nerve root was contained inside the tumour. My treatment protocol changed. Instead of high dose chemotherapy, I had two cycles of MIBG therapy with chemotherapy in London, followed by 22 sessions of radiotherapy in Nottingham. I did go on to have 13-cis-retinoic acid, but the side effects I experienced meant I stopped this a few months early.
Coping with cancer as a teenager
“The hardest part was the fact everyone my age was moving on, progressing through their lives, making life choices, gaining more independence and my own life was on hold. I just felt like my new identity was the ‘girl with cancer’,”
Chloe with her friend at a fundraising event
My age meant I was very aware of what was happening to me, I was aware of my own mortality and the upset it was causing to those close to me. My focus and worries shifted from GCSE’s/exams, friendships and usual teenage issues to cancer and facing gruelling treatments to even have a chance of a future. That is a lot to cope with at any age, let alone as a teenager or young adult.
At the time I should have been gaining more independence and freedom, I had that stolen from me. I had become very dependent on my parents, due to the harsh side effects of treatment. I did not attend the rest of my GCSE year at school, as I was undergoing induction chemotherapy and I missed out on lots of fun social events.
I found it very challenging going back to the hospital for each treatment, during the hot summer days I would see teenagers of a similar age having fun and I felt robbed of those fun carefree times. My life was dictated by hospital admissions at various hospitals, gruelling treatments, and hospital appointments, with a small snippet of normal life.
The hardest part was the fact everyone my age was moving on, progressing through their lives, making life choices, gaining more independence and my own life was on hold. I just felt like my new identity was the ‘girl with cancer’, who didn’t fit in anymore. It was incredibly isolating; I felt a shell of my former self. I craved ‘normality’ and wanted something to focus on other than cancer, which led me to do my A-levels, whilst still undergoing treatment. Body image was also another big issue, as treatment altered the way I looked, I lost my long brown hair, which was very traumatic for me, I suddenly looked like a cancer patient which made the reality of my situation hit hard.
Turning a challenging time into something positive
“I went into nursing as I wanted to make a difference. It also meant I could turn a challenging part of my life into something positive. I have that deep understanding of what it is like to be patient and it is a privilege to be able to provide compassionate care. ”
Chloe qualified as a children’s nurse in 2016, with a first-class degree
At the end of treatment, I was met with many mixed emotions. Although I was happy and grateful to have finished treatment, I also had all these overwhelming emotions, which I was not expecting. I did not feel how I expected to feel. I had been in survival mode throughout treatment, and I no longer knew how to live a normal life.
It wasn’t as simple as picking up from where I left off, the trauma of cancer changed me. It was challenging to piece my life back together, I had the fear of reoccurrence, survivors’ guilt and long-term effects cropped up.
Despite this I continued my A-levels and decided to apply to university to study children’s nursing. Going through cancer was what influenced me to pursue a career in nursing. I qualified as a children’s nurse in 2016, with a first-class degree and got a job on children’s medical ward. I look after both acutely and chronically unwell children from babies to teenagers. I went into nursing as I wanted to make a difference. It also meant I could turn a challenging part of my life into something positive. I have that deep understanding of what it is like to be patient and it is a privilege to be able to provide compassionate care.
Support from many incredible charities
Chloe went on a sailing trip with the Ellen MacArthur Cancer Trust
I was very lucky to have received support from the many incredible charities which made my time during cancer treatment, and transition back to ‘normal’ life, easier. Young Lives vs Cancer, gave a huge amount of support, including a social worker which supported us to fill out complicated forms, provide general support and liaise with my school so they could provide support whilst doing A-Levels. I also had an opportunity to stay at Billy’s House in Nottingham whilst I underwent radiotherapy, which saved us a 100-mile round trip each time for the 22 sessions. My dad also stayed in Paul’s House in London whilst I received MIBG therapy.
When I finished treatment, I also got the opportunity to go on an Ellen MacArthur Cancer Trust sailing trip, which really helped me to regain the confidence and independence that I had lost, whilst I was surrounded by other young people who had been in a similar situation to me.
Tips for other teenagers facing cancer
“Make sure you do not lose sight of yourself and recognise the things that make you your brilliant self! You are not defined by your cancer. ”
Chloe wrote a book to share her experience and tips
My tips for other teenagers facing cancer would be to manage your emotions, do not suppress how you feel. Let it out! Whatever emotion you feel is completely normal. Remember you are not just human, you’re superhuman! No matter how you think and feel right now, you have more strength than you realise. Maybe you’re lucky like me to have reached the end of treatment or you could have an ongoing struggle and facing survival uncertainty. Whatever your situation there are ways to strive towards self-satisfaction and pride. It does not need to be complicated; it could be something simple that if often overlooked. Take a moment to recognise the small things that bring you joy. Make sure you do not lose sight of yourself and recognise the things that make you your brilliant self! You are not defined by your cancer. “
Beyond Fear is Hope
Chloe wrote a book to share her inspiring story ‘Beyond Fear is Hope’. The book also ends with some valuable advice for teenagers and young adult cancer survivors to help them move on and deal with their emotions. Order Chloe’s book here >>>
Our sincere thanks to Chloe 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.