We are grateful to Catherine who worked with us in October 2023 to share her story here. Sadly, she passed away in August 2024. We remember Catherine as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
Catherine Will was a professor on the sociology of science and technology at the University of Sussex. The 46-year-old, from Brighton, East Sussex, was diagnosed with a brain tumour, later identified as a an anaplastic astrocytoma, on her birthday in March 2021 after visiting A&E complaining of severe head pain. She was in hospital for seven weeks during which time she underwent a debulking surgery. Eventually, the mother-of-two had six weeks of radiotherapy and 12 months of chemotherapy.
Catherine tells her story …
“I was being investigated for head pain through my GP but a brain tumour was the last thing I’d expected although two family members had already been diagnosed with different kinds.”
Eventually, the day before my 44th birthday in March 2021, the pain got so bad that I took myself to A&E at the Royal Sussex County Hospital, in Brighton. The doctors there wanted to keep me in but I misunderstood and left, so, when I got home, they called and told me to go back. It turned out I’d been having seizures. I’d been getting dizzy and may have passed out, but I didn’t remember it.
“I was in hospital for seven weeks, which was complicated because of COVID-19 restrictions around visitors.”
I had surgery to debulk my tumour and remember a bit of my time, when my husband was able to visit, but he wasn’t allowed in for a couple of weeks after that. I had no clue what had gone on and was very confused for a while. He was finally able to visit after having a clear COVID test and he explained to me what had happened, which was really helpful. I was released into rehabilitation at the Hurstwood Park Neurological Centre, in West Sussex, but realised I didn’t need or want to be there. It was largely a place for older people who had suffered strokes and so I left after a week. However,
“I went back to Hurstwood Park the next day to have my first oncology meeting.”
I was informed I had a grade 3 anaplastic astrocytoma and that it was incurable but my oncologist, Dr Brock, had just come from a large CATNON trial in Europe. The trial had investigated concurrent, adjuvant, and both current and adjuvant temozolomide (TMZ) to radiotherapy in adults with newly diagnosed 1p/19q non-co-deleted anaplastic gliomas. It was, therefore, decided I’d be given six weeks of radiotherapy followed by 12 months of TMZ chemotherapy.
I live within walking distance of the Preston Park Radiotherapy Centre, in Brighton, so could walk to my radiotherapy sessions if I wanted. Sometimes I was too tired, however, and needed my husband to drive me. Unfortunately, the radiation caused my hair to fall out in clumps, so, in the end, I cut the hair short. I think the chemo I had at the Royal Sussex brought on my menopause, with night sweats. I also had a slight reaction to the chemotherapy drug, which meant my dose had to be reduced, but otherwise I tolerated it well.
“I’m now on anti-seizure medication, as well as HRT for my menopause symptoms, and being monitored with three-monthly scans.”
“I’ve been able to return to work and am so thankful to my employer for being so good to me, paying me in full throughout my treatment.”
I was on research leave and my grant was also further extended, which was great. Luckily, I can do a lot of work from home and there are good transport links to the university campus, so getting there is easy when I need to. Before returning to work, I had quite a lot of psychological intervention. I was informed my language skills had been affected but my maths remained good. I was always pretty good at maths at school so believe it was deeply embedded and harder for me to lose, but I often find myself waiting for a word to come to me now, which is something I’ve had to adapt to.
“As a researcher, it’s obvious to me that we need more investment in research into brain tumours.”
I’m a research champion but have found that a lot of research is focused on glioblastomas, which isn’t what I’ve got. It’s also annoying that cutting edge treatments, such as that which exists for immunotherapy, aren’t available in this country and this needs to change. I would have paid to have my genetic material stored, but I wasn’t given this as an option, which I think is wrong. In other countries, this is done as standard and I’d like to see that introduced in the UK too.
Catherine Will
October 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 Catherine’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