Posted on Thursday 2 September 2021

Chloe’s story: “The challenges I have faced have shaped me as a person”

“We walked onto an oncology ward but we weren’t warned it could be cancer, even my parents were totally unaware. So, we all looked at each other like ‘why are we here?’”

When Chloe was 14 she started to feel tired and would get dizzy. The doctors put it down to chronic fatigue syndrome, but then she started getting a sharp pain in her back too. Chloe’s Mum took her to see the GP, and the doctor felt a mass in her abdomen.

“I didn’t really know that a mass could be cancer, at that stage, I just could tell that it could be something serious.”

After an ultrasound, Chloe was told to see her GP as soon as possible.

“I saw the GP and he said ‘you need to see a paediatrician urgently’. From the way he was saying it, I knew it was something quite serious. He was like ‘everything will be ok’ so I thought ‘what is he too afraid to say?’ which was quite scary at the time. I felt so confused to what was happening, it felt so surreal.”

The next day, Chloe went into school as normal. While sat in the school canteen, Chloe received a text from her Mum saying that she needed to come home.

“I had to go to the school reception – you could tell obviously something wasn’t right. We went to Leicester Royal Infirmary and we walked onto an oncology ward but we weren’t warned it could be cancer, even my parents were totally unaware.”

Chloe had to have further tests to determine whether the mass was benign or cancerous.

“Then they took me and my parents into a side room and told us what it was. My parents were very upset but I didn’t really show my emotions, I think I felt that I should be strong for them.

“They said I would lose my hair, which was probably what affected me more than anything because it’s such a big thing at that age. That was my main concern. And it made me realise the severity of the situation.”

Chloe was only 15 at the time. She was busy preparing for her GCSEs, thinking about what subjects to do for A Levels and generally having fun with her friends.

“It felt like my normality had been ripped away from me. Your social life is taken away, as a teenager that’s the point of your life you should be experiencing things with your friends and gain more independence. I felt completely robbed of that precious time, it was hard watching people of a similar age living a carefree life and I was literally fighting to survive.”

Chloe had been diagnosed with Neuroblastoma, and went on to have several rounds of chemotherapy, surgery, radiotherapy and MIBG therapy over 18 months. Her treatment plan started with eight cycles of induction chemotherapy.

“Each round got harder, it caused me to have severe nausea and vomiting, I had zero energy and I lost my hair. When I got to cycle six I had reassessment scans. My consultant broke the news that the tumour hadn’t shrunk so they brought forward the surgery to try and remove as much of the tumour.”

At just 15 years old, Chloe was scared about having such major surgery.

“It was major surgery I was terrified. That was one of the things I was most scared about. I was worried about all of the risks of the surgery, whether I wouldn’t be able to walk, whether they’d be able to remove it all and what it would mean if they didn’t. Also having major surgery you’re worried about whether you’ll survive it which is a lot for a 15 year old to cope with.”

In surgery, doctors managed to remove half of the tumour. Chloe then had to go to UCLH (University College London Hospital) in London to have MIBG (Meta-Iodo-Benzyl-Guanidine) therapy.

“I had to stay in a lead-lined room because I was so radioactive. I was in hospital isolated for a week at a time; my parents had limited contact with me.

“It was really hard. I’d started my A-levels in the September so I’d started back at school and had a glimpse of normality. Then I was away from friends and unable to go to school for just over a month because I was radioactive, so a risk to others and had very low blood counts. It was challenging.

“Everything I took into the room you couldn’t bring out again so you couldn’t take any home comforts or my favourite things because I had to leave it there. There was a laptop in there so I could use it for schoolwork. You couldn’t use anything like social media or anything to keep in touch with people, so it was difficult. It was incredibly isolating.

“My Dad stayed at Paul’s House so he could be close by. It was amazing for my Dad to be nearby, as with new treatments, your parents want to be there to support you because that’s all they can do. They can’t protect you from it.”

The MIBG therapy shrunk the tumour by a third, which was positive news. Chloe then went on to have 22 rounds of radiotherapy over a month and a half. During this time, Chloe and her Mum stayed at a Young Lives vs Cancer Home from Home, Billy’s House in Nottingham, to be nearby the hospital.

“It was a really special place to be able to stay, although it’s not home it’s somewhere comfortable where you feel safe, it’s somewhere you can relax. Not travelling so far really helped with dealing with the treatment, which was amazing.

“I also met someone who was going through radiotherapy at the same time because of Billy’s House. We went bowling together and just had a laugh – I felt a bit more like a teenager rather than just someone with cancer, just dealing with treatment. It was great to be able to be myself and this connection was really special, it made staying away from home for so long bearable.”

After radiotherapy, Chloe went on to tablet-based treatment for the next six months. She was expecting the treatment to have less side effects but was quite unwell with sickness and migraines.

Chloe found one of the hardest things about being diagnosed with cancer at 15 was missing so much of school and being away from her friends.

“GCSEs wasn’t too bad because they gave me predicted grades, but as I went into A-levels, I had to pick different subjects to what I probably would have picked because I had to do more coursework based subjects, so I could do work at home.

“I missed out on a lot of teaching elements so that had a big difference on school.  Because I wasn’t there as much I felt like my friendships had drifted away, I left with not many friends towards the end of it, which had a big impact.”

Chloe was supported throughout her treatment by a Young Lives vs Cancer social worker, who helped her to keep up with school work and throughout her A Level exams too..

“We had CLIC Sargent social worker who was amazing throughout as well, which without we definitely would have struggled a lot more. It helped us through such a challenging time. From the get go she was there to support us and would always keep in contact often, offering support and she was so approachable and compassionate.

“She helped us to apply for Disability Living Allowance; they helped us fill out the forms for that and to see whether we could get any other benefits. It took a lot of strain off of us – she was there if we needed support at any point.

“They helped us with my education, she set up a meeting with my school to see how they could help me, which made a difference – I managed to get amazing grades for my A-Levels and the teachers knew where they stood and how to support me, so that made a huge difference. This enabled me to get into university to study children’s nursing.”

She also struggled with life post-treatment both mentally and physically. Adapting back into ‘normality’ was challenging for Chloe but she also experienced many long-term/late side effects too.

“It was so hard to move on. I had completely lost my confidence and felt lost. It was anxiety provoking getting back into normal life such as; attending sixth form more often, dealing with fear of relapse and just doing normal things – I wasn’t used to doing that because I was with my parents most of the time. It’s like a new normal. It felt like everyone had moved on, I was expecting to just to pick up where I left off which was not the case.

“I’ve had to live with long-term effects of treatment, which impacts on life on a daily basis. The first one I had was premature ovarian failure, diagnosed at 16 years old, this was caused by the chemotherapy and radiotherapy so I have to have hormone replacement now.

“I’ve also had chronic pain, it didn’t start straight away after treatment, it was when I was at university I was at the end of my first year. Ever since I have had to deal with chronic nerve pain since which has fluctuated in severity. This year I’ve had bad left leg weakness and went into urinary retention so I’ve been in hospital quite a bit this year.”

Chloe has been inspired by her own experience to become a paediatric nurse, to help other young children and their families too. She has also written a book ‘Beyond Fear is Hope’ where she shares her own experience of being a child with cancer, with proceeds going to Young Lives vs Cancer.

“The challenges I have faced have shaped me as a person and it has given me to determination to achieve amazing things.”

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