Jan, a fun-loving and vibrant woman from Pontcanna in Cardiff, was diagnosed with a grade 4 glioblastoma in December 2023 after experiencing subtle but concerning changes in her health. Following a series of scans, the aggressive brain tumour was confirmed, and she was given a prognosis of three to six months with treatment, or six to nine months without. Jan decided to forgo treatment in favour of quality of life. Her condition deteriorated quickly, and she died peacefully on in March 2024, just three months after her initial diagnosis.
Here is Jan’s story, as told by her daughter, Elinor…
My mum was 74 when she was diagnosed with a glioblastoma. She was a retired civil servant, and was married to my dad Joseph. She was a mum to my sister Charlotte and me, and a proud grandmother of four to Ben 11, Megan, nine, Annabel, eight, and Alice, five. She was also one of the funniest, warmest and most generous people you could ever meet, with a witty sense of humour.
Mum had been feeling unwell for a little while in late 2023. She was tired and not quite herself. She went back and forth to the GP and was eventually prescribed medication for anaemia. None of us were overly worried, I thought it might be long COVID or chronic fatigue. She didn’t have headaches or anything that rang alarm bells.
But then one night she fell out of bed, which struck me as odd.
On 19 December, we spoke on the phone, and it was a perfectly normal conversation. Two days later, we spoke again, and partway through the call, she put the handset down and spoke to my dad and then forgot I was on the phone. That had never happened before. That’s when my stomach dropped, and I knew something wasn’t right.
We were due to visit my parents in Cardiff for Christmas, so on 21 December, my husband Thomas and I along with the children drove to my parents' house. When I got there, I could tell immediately that Mum was very unwell. On 21 December, we called an ambulance, and she was taken to University Hospital Wales. It was very late, so we had to leave mum in A&E to have some tests, including a CT scan. It was incredibly hard to leave her there. We were scared and worried.
The next day, we were called back in. The doctors took us into a separate room, and I knew something was wrong. We were told by the on-call doctor that it was a brain tumour, and that an MRI would be needed to confirm the diagnosis. In my mind brain tumours were so rare, something I thought that happened to other people. It hadn't crossed my mind that her symptoms could have been caused by one.
I had to call me sister Charlotte, who I'd been updating since arriving in Cardiff, as well as other close family members.
It was devastating, I think I knew then that I would lose my mum.
Charlotte arrived in Cardiff immediately, and we were all together for the MRI results. We were told mum had a grade 4 glioblastoma, and surgery was not an option. Without treatment, she had 2-3 months to live. With treatment, six to nine months.
It was shocking. No one said a word; there was a deafening silence. It felt like the floor fell away.
Mum was clear that she didn’t want treatment. If the prognosis had been longer, she might have considered it. But she didn’t want to spend her final months suffering through it. As it turned out she became too unwell for treatment anyway.
The next morning mum had a biopsy at University Hospital to confirm the diagnosis. After that, she was discharged from hospital with a bag full of medication but no care plan. It was terrifying. We felt left to figure it out ourselves, with the palliative care team offering only peripheral support. There was no urgency. Mum’s GP surgery was shocked to hear of her diagnosis and didn't seem aware of her care needs.
Charlotte and I stayed with mum full time, having left our children with our partners. While Charlotte cared for her, I tried to piece together what was supposed to be happening with Mum’s care, but I was getting nowhere. We were trying to understand the system while watching her decline. I even asked my parents if we could afford private care. It was extremely stressful. We didn't know when we would return to our children, who were in another county.
Eventually, I phoned the palliative care team at University Hospital in a desperate state. I told them that if they didn’t help me, I would be admitted myself to hospital, and that was true. That was the turning point. The next day, we found out that Mum had been given a place at Ty Llandaff Care Home, just around the corner from my parents’ house. That was the beginning of her end-of-life care.
It was a huge relief. Up to that point, it had been just my dad, sister and me caring for Mum 24 hours a day. We saw the changes happening, Mum would drop her fingers into her food without realising or hold her toothbrush while asking where it was. Her decline was so fast and cruel.
I now understand how deeply challenging it is to care for someone, even someone you love dearly.
Before her diagnosis, Mum had been enjoying retirement, baking, reading, and spending time with her grandchildren. She had so much more to live for. It felt like she became disabled almost overnight.
Mum died on 26 March 2024, just three months after her diagnosis. She was surrounded by love and was cared for right up to the end. Not one of us left her side. I will always be grateful to the staff at Ty Llandaff for enabling her to die with dignity, after everything she had suffered.
Mum was joyful, witty, and always had a sparkle about her. She was creative and loved literature and would never cut short a phone call. She gave you her time, her warmth, and her laugh. After retiring, she went to the University of South Wales in her 60s to study English Literature, she was a very talented writer. I never imagined something like this happening to our family. It’s changed how I see everything.
We need better treatments, more research, and more support. I’ve since learned around 12,000 people are diagnosed with a primary brain tumour each year, yet they receive just 1% of the national spend on cancer research. That’s shocking and unacceptable.
This September, my daughter Annabel and I are taking part in the New Forest Walk of Hope in Mum’s memory. We’ve already £466 so far, and I’m so grateful to everyone who’s supported us. On the day, Annabel and I will bring some homemade cakes, just like Mum used to bake, and enjoy them together along the route.
We’ll walk in her honour, and for all the families like ours who’s worlds have been turned upside down. I want people to know that brain tumours can happen to anyone, at any age. Please trust your instincts and never stop asking questions if something doesn’t feel right.
We need more research, more funding, and more hope.
Elinor James
September 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 touched by Jan’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.
