Shannon Graham, 19, from Dulwich in London, was diagnosed with a rare Dysembryoplastic Neuroepithelial Tumour (DNET) in January 2024. A month earlier, she had suffered a seizure in her sleep but, when she went to hospital, she was told the cause of the seizure was dehydration. Two weeks later, Shannon, who is studying forensic science at London South Bank University, had another seizure and returned to hospital where an MRI scan revealed the tumour. Shannon recently took on the 200k in May Your Way challenge to raise money for Brain Tumour Research.
Shannon tells her story…
In December 2023, I had a seizure in my sleep. It was around seven in the morning - a college day - and my whole family was around me. When I asked what was happening, my dad said I’d had a seizure.
He said I needed to get out of bed because the ambulance was waiting outside. It was all very strange, and I was feeling out of it.
I've never had any seizures, so I was 100% scared and I had no idea what was going on.
I was taken to King's Hospital where I was told I’d had a tonic clonic seizure. I didn't know that meant. I now know it’s a type of seizure where you lose consciousness and your body stiffens, followed by rhythmic jerking.
A nurse told me I might have been dehydrated and not to worry. I went home and everything was fine; I didn't have any headaches or anything. Then a few weeks later, I had another seizure as I was drifting off to sleep, but this one was worse because I bit my tongue. It happened as I was drifting off to sleep and this time, I actually felt that the seizure was going to happen.
I was confused and I actually punched both of my parents, but I didn’t know what I was doing.
Like before, an ambulance was called and it took me to hospital. This time the doctors told me there was a problem and I would need to have an MRI scan.
Unfortunately, I had to wait until the start of January for the results. So, at the start of 2024 when everyone was optimistic and excited about the year ahead, I received a letter from the hospital telling me I had a brain tumour.
The scan showed I had a small tumour on my frontal lobe on the surface of my brain, just hovering there like a little pebble on the sand. I didn't even know what a brain tumour was.
It was a really long letter; it said it had come to their attention that I had a low-grade brain tumour. I thought I was going to have a panic attack. I was staying in my room, I wasn't eating, I wasn't sleeping, and I was googling all sorts of questions about brain tumours: Am I going to keep having these seizures? Am I going to be on tablets? Do I need to have surgery? What's wrong with my brain?
This was when my depression started and I spiralled down into a really bad rabbit hole.
I think it would have been better if I had been told by a doctor in person instead of by letter.
I was 17 at the time, and I didn’t know how to contact the doctors because I didn't have any of their numbers or emails.
I watched a YouTube video of what a low-grade brain tumour was, and the first thing I saw was people having seizures. I wish I hadn’t seen it because I still get PTSD thinking about it.
I was a mess. Fortunately, my family was there for me, assuring me that we would get to the bottom of it.
Throughout 2024, I had appointment after appointment and therapy sessions because I was so depressed. I had monthly MRI scans for eight months.
Eight months of being looked at and analysed. I hated it because I'm not a fan of hospitals.
When I think about it, it makes me so annoyed. I know there's a waiting list and others also need to have surgery, but I was having these really traumatic seizures, even though I was on anti-seizure medication. The seizures were so severe that I ended up punching my mum and dad. I was so upset because I would never do that. I felt like I had to beg the doctors to just give me an operation. The doctors kept upping my anti-seizure medication dosage each time, but it was giving me acne. It was so stressful.
I was diagnosed when I was 17 but I didn't have surgery until I turned 19 which is ridiculous.
When I was diagnosed, all I kept hearing was “Shannon, it's benign, it's harmless, it's not going to kill you. You don't need to have this surgery right now”. I actually got into an argument with one of my doctors because she said to me: “You can keep this brain tumour in because it's not really doing anything to you. It's not hurting you”.
I was so angry because the tumour was giving me seizures and making me depressed.
I kept lashing out at my family when they tried to restrain me. Why would I want to keep it in my head?
On 8th September 2025, I underwent surgery to remove the tumour. I felt really nervous; I had to sign a document of what could go wrong. It was a long list of things like I might never be able to walk again; I could be blind in my left eye, I could have facial paralysis, and there was a chance of me dying on the table.
My mum, dad and twin brother, Christian, told me they were proud of me and that I was going to smash getting through the surgery . They said they would take care of me. That made me feel really positive.
When I had to say goodbye to my mum, I broke down in tears, and so did she. We were both emotional wrecks. Fortunately, the operation went smoothly and the surgeons manged to remove the whole tumour.
The minute I saw my mum after the operation, I gave her a massive hug because I had been so worried that something would go wrong in theatre.
My mum’s friend Carla came as well, and I was so happy to see her, too.
I was in the hospital for five days, and then I came back home to recover. Mum was taking care of me and making me my favourite meals. Then, three weeks later, I went back to university because I didn't want to miss out on my learning and I wanted to get back to reality.
A few months later, I got a tattoo which symbolises my brain tumour journey.
I take anti-seizure medication and, luckily, I haven’t had any more seizures. However, I have noticed that I stutter quite a lot now.
I still struggle with my mental health. There are days when I'm really doing well and feel so happy, but then there are days where I'm so emotional because I realise the enormity of what I’ve been through.
The doctors don't think the tumour will return so that’s great. My next hospital appointment is not until October.
I recently took on the 200k in May Your Way challenge to raise money for Brain Tumour Research. I could cover the distance in any way I wanted, so I cycled it.
This cause is so close to my heart and it’s vital that research into brain tumours is properly funded.
This disease isn't given as much government funding as other cancers, so I want to do my bit to help. Brain tumours kill more children and adults under the age of 40 than any other cancer, so I want to do anything I can to give other brain tumour patients some hope.
Shannon Graham
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 Shannon’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.
