Amy’s story
A sudden seizure in her sleep was the first sign something might be wrong with Amy. It was May 2023, and she was in Ibiza, on holiday with a friend. Amy’s friend, who witnessed it, was very upset, but Amy had no recollection of it whatsoever. She explained: “One minute I’d laid down for a rest, the next minute, paramedics burst into the bedroom.
“I thought, maybe someone’s put something in my drink.” The medics in Ibiza did basic tests on me, and everything was ok. I walked out of the hotel room absolutely fine.”
There were no further seizures, and Amy, 30, was able to continue with her holiday, so it was easy to put it down to an isolated occurrence. But later that summer, she started to have random panic attacks. She also noticed she was getting blurred vision. Amy, an accountant, thought it might be down to looking at screens for work. But she decided to go and get checked out.
A neurology appointment led to a suspected diagnosis of epilepsy. Initially, Amy was told a scan to confirm this was not routine. Nonetheless, a scan was ordered, to rule anything else out. Amy said: “So much of my diagnosis was down to chance. I nearly didn’t have a scan. Then when I went for one, they forgot to do it with contrast at first. A nurse called me back at the last minute. If they hadn’t done the second scan, my tumour might have stayed undiscovered until much later.”
Shock news
Amy found out about her brain tumour in a blunt phone call. She said: “I was on my own at home at the time. It wasn’t ideal. The doctor said, “It’s good news – it’s not epilepsy. You’ve got a brain tumour.”
“I couldn’t process it at all. I called my mum – I was completely unsure what it meant. When I called the doctor back, I asked: “Is it cancer?” He just said: “Probably.”
In fact, Amy’s tumour was later found to be an astrocytoma, grade 4. Surgery was planned for just a few weeks later.
Amy’s first surgery, in August 2023, went well, but 10% of the tumour remained. This was due to its position in her left temporal lobe, and fears that her speech would be affected by removing more. But Amy’s surgeon wanted to try again. Amy said: “My surgeon is fantastic. I felt able to put all my trust in him. When I came round from my second operation, it was nice to see him sitting at the end of my bed, and to see that he was smiling! He was very happy to have taken 95% of the tumour out.”
Treatment
Chemo and radiotherapy followed. To begin with, Amy had both treatments simultaneously for six weeks. It was tiring – involving an hour’s journey to the hospital and back – but: “it wasn’t painful. I think the build up was worse than the reality. Having the mask made was the toughest part. My face swelled up. I lost quite a bit of hair. The worst side effect was exhaustion.”
Amy then had more chemotherapy, from January to June 2024. Now, she’s monitored by regular scans, that recently moved from every month to every three.
How The Brain Tumour Charity helped
Coping with her diagnosis and treatment regime, and all the disruption that caused, was understandably very difficult. Amy attempted a return to work, but found it a struggle to concentrate and perform at the same level as before. She explains: “Although I’m so glad most of my tumour was removed, it’s tough to know that some of it was, and is, still here. Then daily sessions of chemotherapy and radiotherapy for six weeks, and additional chemo for six months … it was draining and terrifying to try to accept, and try to survive.”
Amy found out about our free counselling service from our website and referred herself for some sessions. Her family have already lost members to brain tumours, and know only too well the devastation they can cause. Talking things through with someone outside immediate family was a big help: “I could talk about things I couldn’t tell my mum. I’d been in a bad way. I’d been writing letters to leave to my family. I was scared of dying, and at the same time, I was trying to pretend that everything was fine. That’s not healthy.
“My counsellor was amazing from the start. It was if I knew her, and she knew me. As my treatment went on, my mood improved. She could see the improvements in me.
“I’ll always be grateful to the Charity for the support I received, and for the precious support they provided to family and friends. It made such a difference to how I was feeling, and helped me to get through my treatment. It helped me into a routine and to get some independence back, without feeling terrified and angry due to memory issues etc, every day.
“The Facebook peer support group was also valuable – not just for emotional support, but also practical things around daily life with a brain tumour, like your driving licence, travel insurance, etc – things like that. Reading other people’s personal stories on the website was helpful as well. It was reassuring to read stories from people with the exact same tumour as me.”
Active Autumn: 34 minutes, for 34 days
Amy took on an Active Autumn challenge because she wanted to raise funds to help other families going through similar things to hers– and because she wanted to gain some of her fitness back. Active Autumn – one of our brand new seasonal fundraising events – asks you to do 34 minutes of exercise, for 34 days. How you achieve that is up to you! Amy said: “After my treatment, I had physio sessions, but that would take all of my strength. A ten minute workout was an effort for me. I wanted to take part in this challenge to prove I could do it.
“To make sure I moved every day, I mixed things up. I did gym workouts, dance workouts at home, and I’d swim if it was raining. I really enjoyed going for walks with my dog. She was a good motivator!
“I would definitely recommend doing the Active Autumn, or similar challenges, to others. Knowing that I had raised funds and so many people had donated to the charity for me doing the challenge, helped me to keep going and find the energy and motivation to try something different, or build the confidence to go workout in the gym.
“It brought me back a lot of energy and helped me in to a normal routine. By the end of the 35 days, I could see a difference in my fitness, even now walking up a hill isn’t as difficult as it was during and after my treatment.
“Any money we can raise for the Brain Tumour Charity will allow others to access the counselling, support as well as more time to find a cure to make our lives stronger!”
Amy not only completed her workouts, she smashed her fundraising target as well! Amy’s fundraising page for Active Autumn has raised an incredible £1000 so far, (with Gift Aid):
Feeling inspired?
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