Julie from Norfolk was diagnosed with a central neurocytoma in June 2022 after blacking out at home. The shop worker, who is 51, also had migraines, something she’d suffered with since being in school. She endured two operations and relies on a permanent shunt to help drain a build up of fluid around her brain. Although Julie lives with the knowledge that her tumour can grow, she feels survivors’ guilt and has taken to fundraising for Brain Tumour Research to help find a cure for all types of brain tumours.
Julie tells her story…
In my late forties, I started getting lots of headaches. I’ve suffered with migraines since I was eight, they were more pressure headaches. I managed the pain in my head well until 2020, when I then took myself to the GP who prescribed me with tablets for high blood pressure. After a few weeks, my headaches seemed to ease, I thought, okay, that’s the problem solved.
In June 2022 I had fall during the middle of the night after blacking out on my way back from the bathroom. It was about 3am, I suddenly felt hot and dizzy and fell to the floor. I managed to get back into bed and when I looked in the mirror that morning, I noticed a cut on my head, deeper than I thought. I took myself to Cromer & District Hospital A&E, there, I was stitched up and advised to go to Norfolk and Norwich University Hospital to find out why I blacked out.
The doctor initially thought the dose of blood pressure tablets were too high but said they’d give me an MRI scan as a precaution.
A group of doctors came to see me and walked me to a side room. I was told the scan revealed a large mass on my brain. They told me I’d need to stay overnight and see a specialist the next day.
My phone battery was flat, I couldn’t contact my parents to let them know. My sister was with me, and I asked if she could go to see them to tell our family the news.
After spending a night in Norwich, I was blue lighted to Addenbrooke’s Hospital in Cambridge, my partner of 32 years, Mark, insisted the doctors hold off on any treatment until we were fully aware of the full picture to which a doctor expressed their concern for my health which shocked me. I thought I was going to die.
A consultant explained that I had a rare brain tumour called a central neurocytoma. It was growing in the ventricles which are the fluid filled spaces in the brain, causing hydrocephalus.
All these names meant nothing to me, I just wanted to know if it was low-grade.
I had another scan, this time a full body including brain scan which showed only the one tumour on my brain although the fluid build up was so severe, the doctors were surprised I didn’t have brain damage.
I talked diagnosis through with my family. Armed with information from the medical team that if I didn’t have an operation, one day I wouldn’t wake up or I could go into a deep coma. I opted for a craniotomy which took place on 7 October 2022 and lasted 10 hours. The surgeon removed 75% of the tumour and remained in hospital for four weeks after, assuming the fluid from my brain would drain naturally.
After spending a couple of weeks at home, my partner phoned the hospital. I became almost completely unresponsive. One morning, Mark just couldn’t wake me up. I was mumbling and couldn’t wake up properly which we found out was caused by hydrocephalus.
The next day I was in surgery for a second time this time to fit a shunt to assist the draining of the cerebrospinal fluid (CSF) which wasn’t happening on its own. When I saw my partner the next day, he couldn’t believe the difference as I was sitting up in bed, alert. He commented that it was like someone flicked a switch.
Full recovery took a good few months and I slowly returned to work. I’m now shunt dependent and am used to it being there and continue to live life almost the same as before. I do worry about headaches, is it just a headache or is it a shunt malfunction but I feel lucky to be here. I get to live again, so many others are not so lucky, that’s why I have survivors’ guilt when I talk to others who have lost so much.
My short-term memory is impacted, and I’m scanned once a year and will be for the next decade to check the residual tumour, which can apparently grow back high-grade.
It never really leaves your mind and the saying “benign is fine” certainly isn’t how I feel. Every day I wake up is a great one and I was pleased to celebrate my 50th birthday in 2023.
I now like to fundraise, when possible, for Brain Tumour Research, especially around Christmas with a light display, to help others and hopefully one day find a cure. I have met a few local people who have either lost someone to a brain tumour or have had one themselves, there seems to be so many people suffering now, perhaps it’s because I’m more aware of them.
Julie Davies
December 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 Julie’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