Carly’s story
Life was good for Carly. She loved her job, had recently married her childhood sweetheart Kris, and just celebrated her 30th birthday. What she didn’t know was that she was living with a large brain tumour. Carly told us how it changed her life.
I had a sudden seizure at home in September 2017 which was the first sign that something was wrong. I don’t remember anything of it myself, but my husband Kris said it was like I was sleepwalking before I fell to the ground. I was taken by ambulance to A&E in Bath and, whilst initially doctors felt that, in the absence of any other symptoms, the seizure was likely to have been caused by stress and fatigue, I really sensed there was something more wrong.
I was fortunate to have private health care through work and so was able to get an MRI scan in just a few days. When the results came through and I received a text asking me to immediately see my doctor, I felt it was bad news – and I was told that the scan showed a large tumour on the left-hand side of my brain.
So it was October 2017 when I was referred to Southmead Hospital, and was advised that the tumour was most likely to be a low grade glioma, and that I didn’t have to have surgery immediately but recommended it in one to two years. In the meantime, I would have medication to reduce the risk of another seizure. However, with the tumour being on the left side of my brain, which affects speech and movement, I really didn’t want to wait and was certain that I wanted surgery straight away.
Surgery and diagnosis
In January 2018 I went through a 13 hour awake craniotomy – I needed to be awake during the surgery to minimise the risk of long term damage to speech and movement due to the tumour’s location. It involved being tested throughout the operation by being shown simple pictures, and me identifying and relating different images to test different areas of my brain. I’d been well prepared for it and was grateful to have been put in touch with someone else who’d also been through similar, but it was a daunting experience, even though I can’t now remember much of it.
Fortunately most of the tumour was successfully removed. For about two weeks afterwards my speech was badly affected but the doctors were pleased with how quickly I recovered, and my family were certainly a huge support through this this time. Six weeks after surgery the tumour was finally diagnosed as a grade 2 oligodendroglioma.
I was warned that it could be a year before I was fully healthy, but I did gradually get back and return to my job. But it was a massive shock and it does have a big impact on life, especially with an unknown future. I was put on a ‘watch and wait’, being monitored with onging MRI scans. The type of tumour I have meant that I would eventually need further treatment – possibly in the form of radiotherapy, chemotherapy or more surgery.
Feeling alone and how support helped
For the initial time after my diagnosis I felt really alone.
It’s hard to come to terms with the diagnosis and how it can change your life. But what massively helped was my referral by the hospital to Brain Tumour Support – that was about six months after my operation.
I received the help of a specialist Support Professional, who could tailor support to what I and my family needed. I was worried about how others would take what I wanted to say, but meeting Sarah made me able to be open and honest about my thoughts.
I also attended regular support sessions, which continued online throughout the Covid pandemic, where I could meet other people going through something similar. It’s made a really positive impact on how I think, how I manage day to day, and helped me get through very challenging times.
It’s priceless, to be able to deal with different emotions and have your mindset in the most positive way. It makes a massive difference.
An extra special event
Kris and I also faced the concerns around how my diagnosis may impact on our wish to have children, and so we were overjoyed with baby Ivy coming into our world in August 2021. With the support we have received through all this time it’s wonderful to look forward positively as a family.
Carly Beasley | January 2022
After sharing her story with us, and following some tumour re-growth, Carly went through further surgery, radiotherapy and chemotherapy. She once again had to work through weeks of therapy to regain her speech, and she achieved this for a second time, and completed all her treatment.
Although she knew the tumour may return, Carly continued to stay positive with the support of her family and friends, and in contact with her Support Professional whenever needed.
She also attended the face-to-face support groups held in Bristol and, having met fellow brain tumour survivor, Anna, through the Brain Tumour Support online groups during the pandemic, the two developed a lasting friendship and were always delighted to catch up in person.
Sadly Carly’s illness progressed but she was determined to be there for her young daughter Ivy’s first day of school, a milestone which she achieved.
A few weeks later, on 21st September 2025, Carly passed away peacefully. Her beautiful, vibrant and fun-loving nature forever missed by her family, friends and the many people whose lives she touched.
We are extremely touched that Carly’s family have suggested that anyone wishing to make a donation in honour of Carly may choose Brain Tumour Support or Dorothy House Hospice as two charities very close to their hearts.
If you would like to help our continued work helping families like Carly’s, donations can be made below.
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