Laura, aged 43, is a lawyer originally from Cardiff and now living in London. At 40, with a full an happy life ahead of her with her husband, Dave, she never imagined she would be diagnosed with a glioblastoma. Her journey has included emergency hospitalisation abroad, awake brain surgery, radiotherapy, chemotherapy, recurrence and the harsh reality of limited treatment options.
Laura tells her story…
I turned 40 in August 2022. To celebrate, Dave, who was 42 at the time, and I booked a house in France and invited friends to join us for a weekend party. We flew out the day before everyone else arrived, and there was absolutely nothing that suggested anything was wrong.
That first evening, we went out for dinner, went to bed, and everything felt completely normal.
The next thing I knew, I woke up in a local hospital with no understanding of how I’d got there – or why.
During that night, I’d had a tonic-clonic seizure while I was asleep, for which Dave had to rush me to the local hospital. When I woke up that morning, I had no idea what had happened or why I was in hospital. I’d never been a hospital patient before. I remember seeing Dave; he looked completely stunned and devastated. He told me that I’d had an MRI scan during the night and the doctors had told him that I had a brain tumour. Other than the single seizure at night, there were no other red flags or symptoms that I’d had.
Because of the steroids I was given in hospital, the news didn’t land at all at that time. It went in one ear and out the other. I just wanted to leave hospital and enjoy my birthday with my friends.
I called my mum, Susie, who had no idea what had happened. She asked why I was in hospital and I told her I had no idea and that I was absolutely fine. Dave had to fill in the gaps for my parents.
I signed myself out of hospital later that morning. I was exhausted and on steroids and anti-seizure medication, but otherwise not cognisant of the serious health situation I faced; I was focused on celebrating. That first week was fine for me (thanks to the distraction of blue skies and being surrounded by my friends – and the meds I’d been prescribed at hospital!) but in hindsight, horrific for Dave. He was watching me, knowing something was very wrong, while we were away from home. I still feel incredibly guilty and can’t imagine how frightening that must have been for him.
For reassurance during that week, we spoke to a doctor – since, my neurologist - in the UK. They said there was no need to hurry home because I was on the correct medication and would be stable. It also meant that my health admin was sorted out before we started seeing the doctors at home. At the end of the trip, we chose to take the train home rather than fly to be on the safe side.
When we got back to the UK, we saw the neurologist, which escalated my medical care very quickly.
I remember the surgeon saying, “We’ve probably found what is going to kill you, we just don’t know when.” That sentence will stay with me forever.
By that point, I was off steroids and much more aware. This reality hit me hard.
In January 2023, I underwent surgery, an awake craniotomy that lasted five hours. It was surreal, something you only ever see in frightening TV shows. The prospect of the surgery was horrifying but necessary. In actuality, I was very well cared for throughout. For example, a speech and language therapist asked me questions during the operation so that my brain function could be monitored throughout. I can still remember some of those questions…
Amazingly, I came out of surgery without any noticeable side effects. Everything the surgeon had warned me about didn’t materialise, and I remain incredibly grateful for that.
Before my surgery, I was told that my tumour tissue would be flash frozen and stored in a freezer so it could be used for future research and potential treatments. At the time I didn’t think anything of it beyond “OK, cool”. What that meant for my future was a mystery to me at the time, and my mind was only on gearing up for surgery.
Within a week of returning home from hospital, I was told the tumour was a glioblastoma.
I began seven weeks of radiotherapy alongside chemotherapy. The fatigue was overwhelming. I lost some my hair, which was upsetting not because of how I looked, but because it was a visible sign of the cancer and what my body was enduring. My memory, appetite and taste changed, and food I once loved no longer appeals to me.
I finished maintenance chemotherapy in April 2024. Although I was relieved, I felt scared, like I’d lost a safety net. I continued with regular scans and did well until June 2025, when I experienced the first of two episodes experiencing problems with speech and comprehension.
I went to a Pilates class and at first everything felt fine, although I noticed the lights felt glaring. When I left the gym, Dave messaged me to ask what I wanted for dinner. I could recognise the message, but I couldn’t work out the words I wanted to reply with.
I remember thinking how strange that was, but because I didn’t have a full seizure as I had done in France, it didn’t strike me as a recurrence. I was only about 15 minutes from home, so I started walking, trying to read street signs I see every day. I knew I was looking at familiar words, but my brain couldn’t connect what I was seeing with the words I wanted to say.
Mum was staying with us that week. When I got home, all I could manage to say was “I can’t” and I couldn’t finish the sentence. Mum gave me an extra dose of my anti-seizure medication and, about 20 minutes later, my words came back.
Unfortunately, a couple of weeks later, I woke up one morning and my words just weren’t there again. I went to A&E as a precaution and was told nothing concerning could be seen on the CT. It wasn’t until I had another MRI with my oncologist that I was told the cancer had come back. Hearing that was devastating.
I went back onto chemotherapy immediately. That solved the symptoms I had been suffering that summer, which I was very thankful for, but by January 2026 its efficacy has dropped. I’ve since started a new chemotherapy treatment, which feels unfamiliar but a new step in the right direction. As long as it works for me.
Last week, I had my first adjuvant treatment session. Sitting in the day unit, it hit me anew that this is my reality: I am a cancer patient.
If this treatment doesn’t work, I’ve been told I may have 12 months to live. That knowledge is an absolute gut punch.
Brain tumours kill more adults and children under 40 than any other cancer in the UK, yet since 2002, just 1% of the national spend on cancer research has been allocated to brain tumours. Seeing those statistics is devastating when you’re living this reality.
My family and I have looked, and continue to look, into many possible treatment options, here and abroad.
In looking into these other treatments, I’ve been told (quite bluntly) that my brain tissue wasn’t in fact fresh-frozen at surgery. That means that my brain tissue removed at surgery can’t be used in some clinical trials – such as 5G and DC Vax, which show so much promise for GBM patients like me. Finding out that my tissue sample hadn’t been frozen, because at the time the hospital where I had my surgery didn’t have the facilities to do the freezing, was utterly devastating. That statement has been incredibly hard to process and move forward from.
This should not be a lottery. The hospital at which your tumour is removed or the team tasked with that unenvious job should not dictate whether further treatments are possible. That reality shattered a lot of the hope I’ve been clinging to. I can only continue to hope that my tumour tissue not being fresh-frozen isn’t the blocker to my future. Will it be?
I don’t want to be told my time is limited simply because treatments available here are too locked-down.
In learning about DC Vax, I was told that my tumour potentially could be a good candidate and I could do well on that treatment. Hearing that was such a relief - only to be turned away because my tumour tissue was formulin-encased and not frozen, which was soul-crushing to hear.
Similarly, in scoping 5G trials, I learnt that one of the excluding conditions is a lack of frozen tissue. Here, frozen tissue is required for gene sequencing. It’s beyond my understanding (for sure!) why this can’t be done on tissue that wasn’t fresh-frozen. The result for me is the same - I can’t qualify for it.
Unless I require another brain surgery, which I wouldn’t wish on anyone, I will not be able to benefit from these and other treatments. There’s nothing I am able to do to change that - except implore those who can make a difference to do it.
Surgical teams - please opt in your patient’s tissue for freezing and make it happen. Or if you can’t make that decision for your patient, proactively have the opt in conversation with your patient before it’s too late. Don’t assume your patient knows about how tissue samples can be stored, let alone know if they have to make that decision for their own tissue. I didn’t.
Clinical trial teams – please do not forget about those of us who do not have frozen tissue samples. If tumour tissue isn’t frozen, clinical trials might still be made open to patients like me anyway unless there’s an unavoidable reason for needing fresh-frozen tissue only. So thankfully, my type of tumour is rare. For research and development, the field of potential patients is small enough already without excluding those of us who weren’t subject to tissue freezing. If we might otherwise qualify, please consider whether frozen tissue is truly required.
Please work with us whenever you can. We can work together on a cure.
People with brain tumours deserve more help, more hope, more funding and more treatments options.
My mum took part in the 10,000 Steps in February challenge and raised £3999.50 for Brain Tumour Research. What a hero! Her action reminds me that there are people fighting for change, and that one day – hopefully, very, very soon - patients like me will have more options and a fairer chance at life.
Laura Acreman-Scanlan
March 2026
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 Laura’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
