Nikki Bennett, 41, from Conwy in North Wales, woke up with a baggy eyelid and headaches in June 2024. A CT scan revealed a meningioma, with Nikki needing urgent surgery. Weeks after the operation, Nikki had to be placed into an induced coma after developing meningitis.
Here is Nikki’s story in her own words…
I was 40 when it happened. I had started to not really feel like myself. It was difficult to put my finger on what was wrong. I worked in an office on my own up here in north Wales, and as a very sociable person that gets a lot of energy from other people, I thought the strange feeling might be down to solitary working. I also thought it might be down to hormones, but I had that checked and everything was normal.
I then started work in a customer service role at a garage to get more social interaction. Five weeks in, I began getting these headaches. It was just like a bit of a niggle in my temple. Then after a couple of days of this I woke up with a baggy eyelid. I went to the doctor because I thought it was temporal arthritis after googling my symptoms. The doctor agreed and told me I needed intravenous steroids.
At the same day emergency care ward I saw some more doctors. I don't think they really believed what was wrong. I had a little bit of an ache in my jaw, but nothing major. They were convinced that this was something for the dentist, but I was adamant the pain was in my temple.
I was offered a CT scan to please me, almost to shut me up. They did the scan, and that's when they found the mass.
My husband was nearly sick when we found out. All I said was ‘ok’.
I was very much on autopilot. I had melanoma in 2013 so I know the impact of what stress can do to your body and how much of a negative it can be in terms of your mental health. So I just knew I had to get on with things. I wanted facts. I needed to know what my next steps were.
I had an MRI at the Walton Centre in Liverpool, and they actually found lesions on my liver and cysts on my ovaries too. I spent five days in and out of hospital having everything that the Walton wanted me to have done. I was officially diagnosed with a meningioma brain tumour. The mass was 5cm x 6cm, the size of a small orange.
It was a shock, but again I just wanted to continue as normal. I was still going to the gym as I didn’t want to lose something I’d always done. The doctor’s face dropped when I told him this.
They told me that if I had a seizure now, it would be fatal.
I had had no idea just how serious it was.
The operation was a fantastic success. There was no pain at all after, it was if I’d literally just had my head shaved. I was home within five days.
About 10 days after that, however, I started to get swelling down my face. I looked like the Elephant Man.
They had to drain my head of cerebrospinal fluid so they inserted a lumbar drain. There was still a hole in my head that hadn't healed, so they wanted to drain the fluid out my spine to give the chance for it to heal. The following night, I woke up in the hospital absolutely dripping in sweat.
I rang my husband, Liam, at about 10pm, and told him I felt a lot better. That was a Tuesday. I fell back asleep and when I woke up, it was Friday.
I don’t remember anything, but I had three seizures in my sleep, so they had to put me in an induced coma. They had to carry out an emergency operation to clean the wound. I was in hospital then for another three and a half weeks, and found out later that I had developed meningitis. All of this was far worse than the initial brain surgery.
I now need a cranial plastic inserted into my skull. This has been delayed until January as I am still recovering from the meningitis.
Right now, I’m focused on getting my fitness back, which is part of the reason why I’ve signed up for Brain Tumour Research’s 99 Miles in November challenge. It’s so important to get the word out there about this disease. The amount of people that I've now spoken to who know somebody that's been affected by a brain tumour, or have even died from a brain tumour, is shocking. It's not something that's readily spoken about.
It’s so easy to dismiss the warning signs, so easy to make an excuse.
I think it's something that definitely needs more attention. You see information about breast cancer or prostate cancer everywhere, but brain tumours are often neglected. I can’t understand why when the disease can be so cruel.
Nikki Bennett
November 2024
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 Nikki’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