When Michelle Dilger, aged 60, was diagnosed with glioblastoma, it changed the course of her family’s life forever. A successful businesswoman, editor and mother-of-two, Michelle had initially experienced symptoms including very prominent speech difficulties and confusion, and emotional and behavioural changes. After repeated visits to the doctor where she received multiple misdiagnoses, the devastating reality was finally discovered during an emergency hospital scan. Years later, despite enormous physical challenges and repeated surgeries, Michelle’s resilience continues to inspire those around her, leading son Jack, an endurance athlete, to launch sports performance brand Cramp Killa, which supports Brain Tumour Research.
Michelle’s son Jack tells her story…
I was in my final year of studying marketing, in 2018, at the University of the West of England and life honestly felt perfect at the time. Then one day, I got a phone call from my dad, Richard. He was so distraught I could barely understand him, but he just said: “You need to come home. Your mum’s got a brain tumour.”
I was horrified. I felt like the ground had fallen beneath me and had to be collected by my uncle to get me home.
It was completely harrowing.
My mum is an incredibly intelligent woman. She’s always had amazing attention to detail, she’s brilliant with words, and she’s honestly someone I’ve always looked up to. She worked for Clarins and magazines before she and my dad started their own publishing and magazine business, which they’d run together for around 25 years.
Then suddenly she started sending messages that didn’t really make sense. Her speech became confused and disjointed. Looking back now, it was such a clear sign that something was seriously wrong.
At first, doctors blamed it on menopause and anxiety. These doctors had known my mum for 20 years and knew her typical personality and capabilities. But you trust what GPs tell you, because you want to believe everything is okay.
However, things kept getting worse. It reached the point where Mum could barely speak at all and was having fainting episodes.
The misdiagnoses continued with multiple trips to A&E my parents took. It was only after a routine gynaecology appointment in November 2018 that the consultant saw how unwell she was and referred her for an emergency scan where the tumour was discovered in the 30 minutes it took to complete.
My family and I were completely unprepared for the intricacies of a brain tumour diagnosis, even with our unfortunate past experience. One of my sister’s friends at school had suffered a stage 3 brain tumour at 19 and had gone on to travel the world with my sister and subsequently work on BBC documentaries. Such was her recovery, we just didn’t understand how serious things could become.
The only experience we’d really had was that one of my sister’s friends at school had survived three benign brain tumours and gone on to work as a journalist for the BBC. So, in our minds, we just didn’t understand how serious things could become.
We were told that the scan results would be sent to the surgeons and that we could expect to hear back the next week. Such was the severity of the tumour by this point, we were called to the John Radcliffe hospital immediately, with the surgery taking place three days later.
The operation took eight hours and thankfully went exceptionally well. The surgeons managed to remove 97% of the tumour. They had warned us that she may not be able to speak, but she woke up asking why the surgery had taken so long.
When you know nothing of the process, you imagine that the surgery will be the most difficult part. For a brief moment, you think maybe you’re out of the woods.
We were elated when the doctors announced after only three days that my mum could come home. While we were running around preparing the house, all texts and calls from my dad went quiet, which we assumed was because they were driving back. In reality, it was because the surgeons had told them upon leaving that the tumour had been confirmed as a glioblastoma and that the prognosis, even after a successful surgery, was 12-18 months.
You hear that diagnosis and it’s impossible to process. Even talking about it now is difficult.
My mum went through six weeks of radiotherapy followed by 12 rounds of chemotherapy. The treatment was incredibly hard on her physically, but she took this in her stride. Such is the gruelling nature of this protocol of treatment, which was not changed in decades, that the oncologists believed her dramatic weight loss and severe stomach pain was happening as a result and conducted no tests - when in fact it was gallstones.
Seeing someone you love go through such an ordeal is horrendous. My mum is incredibly claustrophobic and really feared the MRI scanners, the masks and even the appointments.
Despite everything, to this day, Mum has never complained once.
Through sheer defiance and determination, my mum fought with all her might to regain her independence - driving, working and travelling just as she always had, where Covid allowed. What’s incredible is that she actually did remarkably well for almost three years after treatment. Every milestone became emotional - six months, then twelve months.
Every positive moment felt like taking a breath.
In early 2023, I was out in Australia training for endurance events. I’d completed a half Ironman and was preparing for a full Ironman in New Zealand while fundraising for brain tumour charities.
Then I got the phone call saying the tumour had come back. After five years, it was a total shock, as there had been no symptoms this time.
Despite the surgeons saying surgery was required within a month, the operation was cancelled or delayed three separate times. Once when she was already in the pre-op ward at the hospital. For us, and more importantly for her, it was terrifying. All we had ever been told was how quickly surgery was required and how quickly the tumour grew. It created an unbearable situation for her, and interim MRIs showed further growth. At one point, she said she wanted to stand in a field and scream in her anguish.
My aunt eventually contacted the BBC to explain the impact the delays were having on my mum. My sister did an interview from home that ended up being shown on BBC News.
Although the second surgery itself went well once it eventually took place nearly three months later, things afterwards became incredibly complicated.
My mum developed meningitis following the surgery which was misdiagnosed and left her in a life-threatening situation - requiring more surgery. Infections and subsequent leaks kept coming back and for the next year and a half, she spent 90% of the time in the hospital.
During this time, the drain which was supposed to be relieving fluid on her brain was mismanaged and left open - this could have been catastrophic. Eventually, surgeons had to perform a major reconstructive procedure because the skin wasn’t healing properly. They removed much of the left side of her skull and used tissue from her thigh to create a skin flap.
The operation lasted more than 20 hours. There were around 30 people involved - plastic surgeons, neurosurgeons and specialists all trying to deal with what had become a very unique and complicated case.
The trauma caused by 13 brain surgeries in two years, means that Mum now experiences speech difficulties and right sided weakness. Despite this, she continues to be two steps ahead of the rest of us. She still goes to the gym once a week and we even took a trip to New York last year.
This year my mum celebrated her 60th birthday, a milestone that once seemed beyond our wildest dreams. We held a party with her closest family and friends, where she was the light in the room, just as she has always been.
After mum’s diagnosis, brain tumours suddenly seemed to be everywhere. We now know, with one degree of separation, four people who have had glioblastoma in the same timeframe as my mum. There are three people in our local area with it. In 2024, one of my closest friends from school, Kai Agnew, was diagnosed with a stage 2 oligodendroglioma.
Kai is one of the smartest people I know. He studied chemical engineering at university and had been suffering terrible headaches for years.
What’s frightening is that before his diagnosis, he’d had 17 GP appointments.
At one point, we were together in Denmark where he was supporting me during a half Ironman. We were cycling in 30-degree heat when he suddenly collapsed. At the time we thought it was dehydration, but looking back it was almost certainly a seizure caused by the tumour.
When he finally had a major seizure years later and received a scan, doctors said the tumour was so large they didn’t know how he’d survived.
Then shortly afterwards, I saw swimmer Archie Goodburn post publicly about being diagnosed with three brain tumours – also oligodendrogliomas – at just 22 years old.
I messaged him completely out of the blue because Kai had been offered proton beam therapy and I thought Archie should know about it too.
Since then, we’ve become really close friends.
At that time, I was heavily involved in endurance sport and triathlon. I’d struggled badly with cramping during races, including during my first half Ironman in Denmark where I cramped so severely it ruined my race despite all the training I’d done.
Six months later, I was training in Australia when a family friend suggested I try vinegar to help prevent cramping. I thought it sounded ridiculous.
But during another race, I cramped again at almost the exact same point as before, so I took this horrible vinegar concentrate I’d brought with me. It tasted awful – but almost instantly my muscles relaxed.
I ended up running a personal best, 11 minutes faster, in the half marathon section of the race. That was the moment I realised there had to be a better way to create an effective anti-cramp product for athletes.
Over the next two and a half years, I developed the concept that eventually became Cramp Killa. But I wanted the business to mean something.
When I started building the brand, I knew I wanted it connected to research into brain tumours somehow.
Originally, I’d raised money for different brain tumour charities simply because it felt relevant to my family’s experience. But after speaking with Archie, we both agreed we wanted to support Brain Tumour Research because its focus is funding scientific research and finding a cure.
That’s ultimately the goal – for families not to have to go through this anymore. Now, Cramp Killa donates £1 from every sale to Brain Tumour Research.
Archie became the first athlete ambassador for Cramp Killa and has since qualified for the upcoming Commonwealth Games, which is unbelievable considering everything he’s been through.
Through Archie I was also introduced to Max Litchfield, a three-time Olympian and British record holder, who also came on board to support the brand.
To have athletes of that calibre backing something I created from scratch is surreal.
There needs to be more awareness and faster diagnosis. One thing I’ve learned through all of this is how little people understand about brain tumours and how difficult diagnosis can be.
Headaches, speech problems, seizures, vision issues; these symptoms are too often dismissed.
I genuinely believe people should be diagnosed from the top down. Rule out the life-threatening things first instead of waiting until someone becomes critically ill. Because when you’re dealing with glioblastoma, every week matters.
There also needs to be better access to treatment. It is an injustice that patients are told that they will be given a standard of treatment and that it ultimately won’t work.
It’s incredibly frustrating knowing that some therapies exist elsewhere in the world but patients in the UK can’t access them through the NHS because of cost.
No patient or family should have to fundraise hundreds of thousands of pounds just to try and save their own lives or the life of someone they love.
As traumatic as this journey has been, we haven’t, and never will, give up hope for my mum and others.
To any family receiving a diagnosis today, I’d say: hold onto absolute and resounding hope, and advocate unfailingly for your loved one. Ask questions and challenge what you might be told.
There are going to be setbacks and terrifying moments, but there is still light on the other side of it. That’s why I want Cramp Killa to do more than just help athletes perform better. I want it to help fund the research that one day finds a cure.
Jack Dilger
June 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 Michelle’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.
