Jessie Mae Lambert, 27, from Derby, began experiencing unexplained seizures in October 2023, which led to the discovery of a brain tumour. In September 2024, she underwent surgery but surgeons could only remove 40% of the tumour - a grade 2 astrocytoma - due to its challenging location. Despite numerous challenges, Jessie has faced them head-on and shares her journey on TikTok, offering advice and hope to others facing similar struggles. Her openness inspired Phoebe, a new friend, to run three marathons in three countries, raising funds for Brain Tumour Research in Jessie’s name. While her tumour will require lifelong monitoring, Jessie is determined not to let it define her, focusing on raising awareness and fighting back with unwavering positivity.
Jessie tells her story…
It’s a bit strange because I didn’t realise, I was having seizures at first. I would call them episodes where I’d be having these out-of-body experiences and wasn’t sure what was happening. All I knew was it felt like I’d been drugged. They started happening more frequently, about three times a day. It wasn’t until December 2023 when I had one in front of my mum and dad, that they realised something was definitely wrong.
Mum noticed these ‘episodes’ and said, “Jessie, I think you’re having a seizure.”
She took me to the GP for an emergency appointment, which I regret attending because it was awful. The GP said I needed to get my story straight on whether these were panic attacks or seizures, even though I’d only described symptoms of a seizure. It felt like he wanted me to agree it was a panic attack, which I refused to do.
Eventually, I was referred to the Royal Derby Hospital and put on a waiting list for an MRI and EEG scan. I called every day to try and get a cancellation, becoming so familiar with the staff that they recognised me by name. It was incredibly frustrating, but finally, in March 2024, I got a last-minute appointment. The nurses attached 24 wires to my head to monitor for any epileptic activity, followed by an MRI scan of my brain.
My oncologist showed me the scan results, and I cannot express the sensation, total panic descended all over my body.
It was a 4cm by 3cm tumour found in my head. At the time, I didn’t know what kind it was or if it was cancerous, but I took comfort in the fact it didn’t look aggressive on the screen. That was me trying to find any positive thought I could and clinging to it at the time.
I was offered three options: monitor it, biopsy it, or have it debulked. I went for the third option because they could biopsy the mass when it was removed. The doctors told me about the risks of stroke and the possibility of not being able to walk, which I was worried about, but I was thinking more about my friends and family. I didn’t want them to be sad, which sounds silly, I know.
My six-hour surgery took place at Nottingham’s Queen’s Medical Centre. When I woke up, I asked if I could still walk, and I was so relieved to be able to wiggle my toes and talk. The surgeons managed to debulk my tumour by 40%, with the remaining mass monitored by scans for the rest of my life.
The surgery went without complications, and I was out of hospital the next day. But a couple of weeks later, my wound got infected, and I was back in hospital for a whole week. This was horrendous because there was a chance the piece they had taken out was infected, raising questions about whether the infection was internal or external. Thankfully, the doctors discovered it was external and there was nothing I had done to cause it. Another hurdle to jump over, but relief when it turned out okay.
I had to wait until September 2024 for the diagnosis: a grade 2 astrocytoma, which I was told was the best news we could hope for.
Because so much of the tumour was left behind, I had to undergo six weeks of radiotherapy at Nottingham City Hospital. Radiotherapy wasn’t a nice experience, and it led to a return of the epilepsy, which I had been warned might happen. But it was important to try and get rid of some of the grade 3 cells that showed up on the scan. I’ve completed the six weeks of treatment and continue to monitor the remaining tumour.
At the start of this mad journey, I decided to document everything I was going through on TikTok. It started when I watched another girl’s videos describing everything I was experiencing and saying it was all caused by a brain tumour. I had a gut feeling that this could be the same for me. That girl’s videos helped me live, so I decided my story might help someone else in a similar way. I give advice based on my experience: keep calling and pushing for an MRI scan, be annoyingly persistent with your doctors for results, and things like that. Even if I help just one person survive by sharing lessons from my own bad experiences, it will be worth showing the most personal moments of my life on video.
I really want to thank everyone who has helped me get through this nightmare. A really lovely thing to come out of this was meeting a new friend, Phoebe, through our mutual friend, Lauren. We had never spoken before, but Phoebe had watched my TikToks and asked for permission to run three marathons in three countries and fundraise for Brain Tumour Research in my name. I was honestly stunned by the kind gesture, and I couldn’t wait to meet her in person and cheer her on at the finish line of her final marathon in Turin.
I know that I can’t be completely cured, and this tumour will be monitored for the rest of my life. But I don’t want it to beat me.
I’ve absolutely bossed brain surgery, the infection, and radiotherapy. I am determined to just keep on fighting.
Jessie Mae Lambert
January 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 Jessie’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.