Esme from Shrewsbury was just five, when she was diagnosed with an astrocytoma. She had surgery followed by gruelling chemotherapy and radiotherapy. For 15 years, her tumour remained stable until 2016 when a routine MRI found a new growth near her ear, too small for treatment at the time. The mass grew further by December 2022. She was diagnosed with an acoustic neuroma and in January 2023 had intensive radiotherapy. Over the last two decades, Esme has overcome bullying because of the life-changing injuries caused by her tumour. Now 27, she wants to share her story as a brain tumour survivor to offer hope that patients can lead a fulfilled life after diagnosis.
Esme tells her story…
Despite living with a brain tumour, I am determined not to be seen as a statistic. I’ve lived with an astrocytoma for 22 years after I was diagnosed when I was five. I had recently started school and remember going to appointments and wondering when my friends would get their diagnoses.
In February 2001 I started to suffer with bad headaches and one day I fell down the stairs, in hindsight, I wonder if that was the beginning of my partial sight loss. My symptoms worsened. I began vomiting most mornings and had regular bouts of tonsillitis.
I would fall asleep at school and repeatedly lost control of my bladder.
This continued for a few months until May. My mum, Pauline, took me to the paediatrician. They saw me losing my balance whilst walking and decided to send me for a CT scan which found a tumour called an astrocytoma was found on my brain.
My mum was distraught. The doctors gave her treatment options which included an operation, chemotherapy and radiotherapy. I had surgery the day after and surgeons managed to remove 70% of the mass. Chemo in June followed.
In order to target the remaining 30% I needed radiotherapy, a treatment which is not taken lightly when treating children.
My mum was reluctant to make the decision based on the doctors’ information alone. She found another family of a young boy whose story was similar to mine and he had come through treatment with minimal side effects.
I had 31 sessions of radiotherapy in as many days, travelling to Queen Elizabeth Hospital in Birmingham with my mum. My head was bolted to the table and the treatment caused me to lose my hair.
Growing up as a brain tumour patient was tough. The other children made fun of me, they called me names and I was bullied for a number of years. The tumour was close to my pituitary gland which impacted my development through my teenage years and I needed hormone therapy. I am still taking medication to help my organs function.
In spite of my diagnosis and the struggles I faced at school because of it, I attended college to study art, a skill the tumour didn’t take away from me. I regularly drew and still draw, having worked on commission pieces which people have had tattooed on their body, and I have drawn some of my own too.
Results of a routine scan in 2016 showed a tiny spot near my right ear. On 13 December 2022 the doctors confirmed the new growth was an acoustic neuroma, which was caused by the radiotherapy I had when I was five and now big enough for more treatment. I spent the whole of Christmas crying, thinking I was going to die.
In May 2023, I had stereotactic radiotherapy. A more precise version of radiotherapy I had when I was five. This time it was delivered by CyberKnife technology which means it was more targeted with less chance of damaging the surrounding healthy tissue.
I had a mask made and was greeted by the familiar face of same technician who fitted me with my first mask all those years ago. I opted to have the treatment in a one-off 40 minute sitting to get it over and done with.
I’ve spent my life adjusting to the changes brought on by my brain tumour diagnoses.
Next year, I am planning to hike up Yr Wyddfa (Snowdon) in Wales, with a team of hiking experts, to raise money for Brain Tumour Research. I’m doing it for my own mental and physical health. Having lost almost six stone already, I want to be a healthy version of myself and give this challenge everything I have.
In almost two decades, we’ve seen advances in radiotherapy, I can attest to this, but it’s not enough. I am urging the Government to step up and take responsibility to invest into researching the disease as they promised. We need to keep us this momentum and improve the outcomes for patients and their families.
Esme Ramsden
November 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Esme’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure