Amy, 38, a former computer science teacher in Exeter, was living a busy life as a new mum when she began experiencing symptoms she initially dismissed as postnatal fatigue.
It wasn’t until a seizure in December 2022 that she discovered she had a brain tumour. What followed was a whirlwind of hospital visits, surgery, radiotherapy, and chemotherapy.
Amy tells her story…
I’d had our little boy and was juggling life as a mum and teacher. I still had that go-go-go mindset. I thought I had what everyone calls ‘baby brain’ tiredness, low concentration, feeling foggy. It all just felt like a part of motherhood, especially after having a baby. I didn’t go to the doctors because I genuinely thought it was just postnatal exhaustion, maybe low iron or fatigue, nothing unusual.
But then the headaches started, terrible ones that would wake me up in the middle of the night. Looking back, I realise my concentration levels were much lower than they should have been. Still, I kept pushing through, assuming it was part and parcel of having a baby.
Then one night in December 2022, I went to bed and had a seizure in my sleep. Luckily, my sister was living with us at the time. I woke up to her and my husband Will looking at me with horror and concern. They said I’d had a seizure. I thought they were joking, how could I have had a seizure if I was asleep?
They called an ambulance, but because I was awake and breathing, one wasn’t sent. Thankfully, my sister Chloe insisted on taking me to Royal Devon and Exeter A&E. I remember feeling nauseous and exhausted in the car. While waiting in triage, I fell asleep and had another seizure right there in A&E. It was all very worrying, then doctors gave me a CT scan and told me I had a ‘space-occupying lesion’. I had no idea what that was or meant. I was confused, shocked, and overwhelmed.
The doctor prescribed me anti-seizure medication, and I also had an MRI. Due to the seizure, I was told I couldn’t drive for a year, which was difficult to hear. Over Christmas, I felt a mixture of anger, anxiety, and fear. It was all a blur.
One minute I was in bed, the next I was in hospital facing brain scans and big decisions.
I was then sent to University Hospitals Plymouth l for a biopsy where the surgeon told me that he thought it was a low-grade astrocytoma. He said I could wait and see how it developed but warned me that waiting could make it difficult to remove later. I didn't want to wait and chose to have surgery. The risks - seizures, complications, even death - scared me. But I knew I couldn’t leave it and risk it becoming inoperable.
The scariest part was not knowing what would happen next.
While waiting for surgery, I stayed home and stopped working. That period was incredibly tough. I spent hours reading things online, trying to understand what was happening to me, terrified I might not get to see my little boy grow up.
In June 2023, I had an awake craniotomy at Plymouth hospital. The anaesthesia room was full of machines which was terrifying. I had to lie on my left side because the tumour was on the right of my brain. During the first part of the surgery, they tested my responses by asking me to open and close my left hand. Then they put me under general anaesthetic for the remainder of the surgery. I fell asleep in one room and woke up in another.
I was in hospital for five days. Thankfully, I didn’t lose mobility on my left side. I wasn’t allowed to drive for another two years post-op, which was frustrating. But the good news is they managed to remove most of the tumour, with only some cells left on my brain. They weren't able to tell me the percentage, but I am happy they felt the operation was a success.
After surgery, my sight was affected, and reading became difficult. I also had physio and occupational therapy, and then the treatment started.
Chemotherapy was the hardest pill to swallow. I struggled to take tablets I knew would get me better but made me feel awful.
In late June, I began 33 sessions of radiotherapy. Before starting chemo, I was advised to freeze my eggs, just in case we wanted to have more children, which I did. Then, in October, I started oral chemotherapy. That was the hardest part. I was sick a lot and mentally it was a real battle.
I was supposed to do 12 cycles but could only manage six which was upsetting. I felt like I’d failed. But my oncologist reassured me there isn’t strong statistical evidence that doing all 12 makes a significant difference so that put me at ease.
Now, I have routine scans. I don’t usually look at them, but I asked to see the latest one. The area where the tumour was is now filled with fluid and there’s no sign of recurrence which is a huge relief.
Life has changed. I’ve changed.
I’ve learned to take life slower. Before, I was on a hamster wheel. Now I value people, time and memories more than possessions. I remember looking at 20 years’ worth of university and college work after my surgery and thinking, none of this really matters.
I still have down days and try to stay motivated. I attempted to go back to work, but it was too overwhelming. The sensory and processing overload made working in a school difficult, and not being able to drive or continue with work was a big loss.
It’s been incredibly difficult for my husband. Every scan brings anxiety. My parents visit weekly and have felt helpless. It’s important to say: the trauma doesn’t just affect the person with the tumour, it impacts the whole family.
My check-ups have now moved to every four months, partly to reduce the impact of the contrast dye on my kidneys. I haven’t had a seizure since the first two in 2022, and I received a clear scan for June 2025 which is great news.
To give something back and raise awareness, I’ve signed for up to do Brain Tumour Research’s 88 Squats a Day in July Challenge. I’ve already raised £150 and the challenge hasn’t even started yet.
Brain tumours come out of nowhere. You never think it will happen to you, until it does.
My advice to others going through a brain tumour diagnosis is not to compare your journey to anyone else’s, be kind to yourself and take it one day at a time.
Amy Dytor
June 2025
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 Amy’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.
