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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Amanda Day

For months, doctors accused Amanda Day of lying and dismissed her symptoms as “growing pains” and migraines. In fact, the teenager had a life-threatening brain tumour which was overlooked countless times, even when it was clearly visible on a brain scan. A talented artist, Amanda is now studying for her A levels, and despite being told that the tumour will regrow, she is determined to achieve her potential and live life to the full.
 
“My life as a ‘normal’ teenager was over. I felt isolated and abandoned by my friends. It was painful to see on Facebook that my friends were out partying and I couldn’t be a part of that. During my treatment I lost lots of weight and watched as my long hair and eyebrows disappeared. I felt ugly and disgusting and refused to have my photograph taken. Instead, I drew a self-portrait of what I hoped to look like once it was over. I had come to terms with dying but I didn’t want to be stuck in a dead-end job and I was determined to get back to school. We know my tumour will grow back but no-one knows when. I keep my hair short now. It’s my war wound and I wear it like a trophy, which makes me proud of everything that I have been through.”
Amanda tells her story:

I was 15 and studying for my GCSEs when I collapsed at school with a suspected stroke. I’d been suffering from severe migraines and crippling pain in my back but no-one apart from my mum was taking me seriously.

We attended so many medical appointments that I lost count and, even after being taken to hospital by ambulance when I collapsed, we were still dismissed. I had a CT scan but nothing was picked up and my double vision, shortness of breath and the unbearable back pain were blamed on “complex migraines.”

If it hadn’t been for mum insisting on an MRI scan, I wouldn’t be here today. She had already been through so much by the time I became ill. My parents’ first child, Sophie, was stillborn early with hydrocephalus, a build-up of cerebral spinal fluid on the brain. My older sister, Rebecca, faces complex neurological developmental delays and has dysmorphic facial features and other challenges such as autism which mean she is unlikely to ever live independently.

While we were struggling for a diagnosis mum was doing her homework. Some of my symptoms were a match for those caused by hydrocephalus which was particularly hard as it took my parents back to the dark days of the loss of their first child 25 years ago. Armed with her findings plus a letter from an optician who recommended an urgent investigation after he had noticed an irregularity in my eye, we visited my paediatrician.
But despite all this, she remained adamant that my problems, which were increasingly debilitating and left me on the sofa for hours, days sometimes, were caused by growing pains and migraines. When the paediatrician accused me of lying it was the final straw. My dad lost his temper and my mum, the strongest woman I know, was in tears. It had got to the stage where I began to doubt myself. I could see how some people might have thought I was being a drama queen and perhaps I was faking it but anyone who knew me would have understood this was not the case. I have always been the type of person who wants to do well and all I wanted was to be able to study hard and get on with my education.

I had been in a slow decline for months and mum told me later that she believed I had just weeks to live. When the MRI finally took place on 22nd December 2013, the doctor had to eat her words. I had a tumour on my brain stem which was visible in the previous CT scan but had been missed. The news was broken to my parents in a phone call on Christmas Eve. We had to report to King’s College Hospital in London on Boxing Day but I wasn’t told until late on Christmas night. Rebecca was told separately. Somehow mum and dad had managed to put on a brave face and give us a wonderful Christmas, setting their worst nightmares aside as we enjoyed our festive meal and opened presents.

I think everyone felt a rollercoaster of emotions. Mum felt vindicated and relieved but frightened by what lay ahead. I was very upset but also relieved that, finally, people believed me. 

Things moved very quickly and I went into surgery the day before New Year’s Eve. The tumour was located at the top of my spinal column and it was attached to the nerves controlling my vision, breathing and consciousness. Although the operation went according to plan I developed an infection in my brain which kept me in hospital for six weeks. I was in a critical condition: my blood count was 1,390, way over the 200 which indicates an infection. I had an external drain fitted to prevent the fluid building up and causing pressure but was struck down with another infection. In my fourth operation I was fitted with another drain, this time permanent, and was diagnosed with acquired hydrocephalus – a complication of my brain tumour – a ghost from my parents’ past.
I was determined to be home for my sister’s 18th birthday on 7th February 2014. Mum and I had been in hospital for six weeks while dad looked after Rebecca and continued to work. I made it. Rebecca was over the moon to have us back and it was extremely important to us both to be together for this milestone.

The surgery had left me completely exhausted and I had a month “off” to rest and recuperate before starting six weeks of radiotherapy at the Royal Marsden Hospital. It was an hour-and-a-half each way from our home on the Isle of Sheppey so mum and I stayed nearby. My treatment was high dosage in order to target tumour cells which had diffused into my spine and after the second day, I was in a wheelchair.

I took anti-sickness drugs but was still vomiting up to six times a day and I lost a stone-and-a-half. The radiotherapy left me with entry burns on my back and exit burns on my chest and stomach. I couldn’t bear to be near anything metallic and had to use plastic cutlery. Where previously I had been a chocoholic now I couldn’t bear to be near the stuff. 

My life as a “normal” teenager was over. I couldn’t go out although I did make it to my school prom but only lasted an hour. I felt isolated and abandoned by my friends. It was painful to see on Facebook that my friends were out partying and I couldn’t be a part of that. I lost my long hair and my eyebrows. I felt ugly and disgusting and refused to have a photograph taken to add to a patient wall at the hospital. Instead, I drew a self-portrait of what I hoped to look like once I was through the treatment.

Mum asked what I wanted to do about my exams and said I could ask to be graded on my existing work. I told her that I had come to terms with the fact that I might die but I didn’t want to be stuck in a dead end job for whatever time I had left. I decided to retake year 11 and started back at school in September 2014 with a bald head. I’d kept up my studies as far as I could during my treatment and passed my GCSEs. Now I’m in the sixth form studying art and design.

I have follow up scans every three months. We know that my tumour, which was identified as a pilocytic astrocytoma, will grow back again but no-one knows when. It could be in five years or 50. I may need more surgery and perhaps there will be different treatment options in the future. It is unbelievable to be told that brain tumours affect so many children and young people yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

For the past two years I have organised Wear A Hat Day at my school, Oasis Academy, in order to support the work of Brain Tumour Research. For now I am concentrating on my A level studies in art and design. I would like to study photography at college and to run my own business one day. I keep my hair short now. It’s my war wound and I wear it like a trophy which makes me proud of everything that I have been through.

Amanda Day, May 2016
Amanda Day

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