Amanda’s Story

“On 11 August 2022, Mummy lost her 3-year fight with brain cancer. Whilst the pain is indescribable, I realise that we were “lucky” in terms of time, and I hope this gives some comfort to families receiving similar diagnoses.

In 2019, Mummy's symptoms including numbness and tingling began. Doctors put it down to menopause and arthritis, but an MRI and biopsy, resulted in a diagnosis of a Grade 4 Glioblastoma in July 2019. We were told the “preferred” route of surgery was not an option due to it being like an ink-splat on her brain.

A 6-week plan of chemo and radio felt doable and we had an expectation that after those weeks, Mummy would be cured, and life would go back to normal. It was, instead, an introduction to a new normal of chemo, appointments, scans and the fear they would tell us there is nothing more they can do.

After the prognosis of 6 months, we had 3 years together. They were not easy- seizures, fractured bones, impaired speech and physical deterioration with paralysis down one side but COVID meant my brothers and I moved home and we were together. Family and friends visited (who wouldn’t love a McDonalds and Champagne lunch), and we visited her favourite place in Spain.

6 months after Mummy, my father was diagnosed with Mantle Cell Lymphoma. Going through this in tandem highlighted the differences in treatment available to lymphoma and brain cancer patients. The treatment options for Mummy, without private treatment, were extremely limited, and almost no clinical trials. TJF’s work is so important to help raise awareness and push for developments in this area.

Time never feels on your side when you receive a brain cancer diagnosis, but remember to cherish every day - even the smallest of things, like a delicious meal, singing along to Kygo on our way to an appointment or a glass (or two) of wine in the evening, can make the day feel special.”