Rhiannon Ashbourne, 29, from Burton-on-Trent in Staffordshire, discovered she had a glioblastoma after a routine eye test initially detected swelling behind her eyes. Because of the tumour’s sensitive location in the parietal lobe, she was told surgery would not be possible. Before undergoing combined radiotherapy and chemotherapy, Rhiannon went through fertility preservation to give her hope of being able to have children.
Rhiannon tells her story…
I was living a normal life, working full-time and spending time with loved ones.
Then in March 2025, I had an eye test at my local opticians. I’d been putting it off because my eyes were fine. I did not know previously how important eye tests are for also monitoring overall health and not just your eyes. The optician said the OCT scan showed a cloudy like swelling behind both eyes which she suspected was papilledema in both eyes. I’d never heard of it but was told it was swelling of the optic nerve.
I was referred to an eye specialist at Queen’s Hospital in Burton on a two-week urgent referral where it was confirmed it was papilledema. They sent me for an MRI scan to rule out any abnormalities, which picked up some sort of mass in the brain which they thought was quite small initially. But after a few more scans, including some with contrast dye, showed it was bigger than first thought. Hearing the words they found a mass in my brain was very difficult to process, as I did not have all the answers at this point.
I was referred to the neurology department at Queen’s Medical Centre in Nottingham. Initially, my medical team suspected a low-grade glioma from the scans as there were no visible high grade features. I was told that, because of the sensitive location of the tumour, surgery would not be possible. I was given two options: watch and wait, or to have a biopsy. I wanted to know what I was dealing with, so I opted for the biopsy.
My biopsy, which was on 26th of June, confirmed my worst fear. It was a grade 4 brain tumour, otherwise known as a glioblastoma which is a high-grade and aggressive form of brain cancer that requires intensive treatment.
Being told this over the phone was probably the worst moment of my life. I broke down and instantly started thinking about the worst-case scenario.
The most difficult part since my diagnosis has been the loss of independence. I had to stop working in June to focus on my treatment and recovery which has been especially hard given how much I value my career. However, I am hopeful once I have finished treatment I can get back to my role. I was happily working full-time as an occupational therapist in mental health which I have been doing for four years. It’s a career I love and find incredibly rewarding.
Outside of work, I’ve always had a passion for travel and exploring different cultures. I’ve been lucky enough to visit many places around the world, and each journey has shaped me. It has made me more open-minded, curious, and grateful for the people and experiences I’ve encountered.
I also can’t drive now because my driving licence was revoked on medical grounds. I have to wait two years before I can reapply again, as long as there are no seizures or regrowth. It’s something I once took for granted but I now rely on others for support in ways I never imagined.
It has just felt like endless loss.
While humbling, it has also shown me just how incredible and generous the people around me are. Now that I’m not working and focusing on recovery, I have more time to go out for walks in the countryside which I find meaningful and to spend time with my loved ones.
I was referred to the oncology team at Derby Royal Hospital and began a six-week course of combined radiotherapy and chemotherapy on 21st August. That was followed by a four-week break before I started a six-month course of chemotherapy tablets called Temozolomide in cycles.
I have experienced nausea, sickness and fatigue. I had a day where I couldn’t stop being sick because of the treatment, which required me to be put on an intravenous drip for fluids and sickness medication.
I’m just taking things day by day because no-one knows what tomorrow brings.
I have had brilliant support from loved ones, who have been taking it turns to come to my hospital appointments with me. Everyone has really come together to support me which I am so grateful for.
Fertility preservation is something I hadn’t anticipated needing to consider at this point in my life. However, due to the potential impact of chemoradiation on fertility, I made the decision to pursue this option before beginning treatment. It’s a decision that felt both important and overwhelming, but I want to give myself the best possible chance for the future, should I be blessed with the opportunity to have children. A few weeks before I started my treatment, my oncologist organised for me to preserve my eggs at Leicester Royal Infirmary. It involved having to inject myself every day for around 10 days and having a minor operation to remove my eggs.
Despite these challenges, I refuse to give in to despair.
Every day is a gift, and I treasure every moment with my loved ones. Their unwavering support and love are what keep me going.
I remain hopeful that with ongoing advancements there will one day be a cure. I hope the chemoradiation therapy slows the progression of this disease to give me more time to live fully and meaningfully.
Alongside my treatment, I’m also raising funds for Brain Tumour Research. I took part in the Walk of Hope at Elvaston Castle in September because I just wanted to do something positive to help others, and to raise awareness and fund research. I have raised £1850 so far which is still increasing, which I am so proud of.
Research in so important. Other cancers are more survivable because they’ve had money for research. It’s a horrible situation to be in as someone newly diagnosed. It’s awful and the stats don’t give you a lot of hope.
We urgently need more funding for this devastating disease to provide hope and, one day, a cure.
Rhiannon Ashbourne
December 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 Rhiannon’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.
