In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Norma from Leamington Spa thought she was suffering with long COVID until a CT scan made the shocking discovery of a mass on her brain. The mum-of-three who is 54 was diagnosed with a meningioma in January 2022. It’s after she experienced episodes of confusion and thought her symptoms could be the after-effects of COVID for the second time. As she nears the first anniversary of her operation to remove the tumour, she is sharing her story to raise awareness and help drive funding towards research into the disease.
Norma tells her story…
When I started to experience moments of confusion I thought it was long COVID, I never expected it to be a brain tumour. There were no headaches, and even today, almost a year since my surgery, I still haven’t experienced excruciating pain which you might expect when you’re told you have something growing on your brain.
Over new year 2021 to 2022, I caught COVID for the second time since the outbreak, this time a lot worse than the first, I felt really poorly with it. I thought that it was a side effect of having it again. There were other things happening in my life, such as working shift patterns which could be overnight and my body was going through changes with the menopause.
My personality was always so positive but I had moments where I felt like I had a short fuse. A couple of times I got confused, the second time I was with my son, Jake. He asked for a lift to the barbers and as we were in the car about to set off I couldn’t remember how to get there. When I turned to him I said that I couldn’t remember the way, he didn’t understand. “Mum, it’s the same road you used to live on for years,” he exclaimed.
I went to the doctor, I knew something was wrong but didn’t know what. After blood tests I was referred to Stratford Hospital for a CT scan. On 10 February I was asked to go to the doctor’s for the results, it was the day after my CT scan but a couple of weeks after my blood test so I assumed the call was to chat through all of my results.
When I got there, everyone was wearing a mask – as was normal at this time. I remember so vividly people pacing the corridor, frantic because the computer system had gone down. A receptionist came over to me asking if I was okay and to let me know that the doctor wouldn’t be long.
Before I sat down the doctor seemed nervous and almost blurted out the news: “you’ve got a brain tumour”, immediately followed by a sympathetic look. I found out after that they had never diagnosed a brain tumour before, and the pacing and empathic reception staff made sense.
I couldn’t believe what I had been told. All I could think about was telling my three children, my husband and my family. I knew nothing about what having a brain tumour meant and had no idea if it was cancerous.
From that moment, I was told I can’t drive due to the risk of having a seizure, and given medication. When I got home, no one was in. I called my two sisters for advice on how to tell my family.
“I handed them the piece of paper the doctor had given me and we all had a cry.”
My tumour was 5cm x 6cm and something that had likely been growing for years, possibly since birth. A month after I was diagnosed with a low-grade meningioma. There was a sense of relief it wasn’t cancer however there is so much more that comes with a brain tumour diagnosis. The steroids I was given made me extremely bloated and caused unbearable pain in my joints. I developed shingles as a side effect of medication which I had to ride out for seven weeks.
Eventually, on 15 June I had a 10-hour operation at University Hospital Coventry & Warwickshire after having to self-isolate for 48 hours. After being warned that surgery could leave me with life-changing injuries, I surprised doctors when I sat bolt upright in the hospital bed and spoke immediately.
“The next day I was walking around to the applause of hospital staff. They couldn’t believe how mobile I was and called me a ‘miracle’, expecting my recovery to take longer.”
I still have part of the tumour remaining – as it wasn’t cancerous and to limit the impact on my mobility and speech. I’m monitored with regular scans which so far confirm no new growth. My memory is fine now, and I have experienced the odd headache, but that could be a sign of stress with everything that has happened.
As I approach a year since my operation, I find myself overwhelmed with emotion in sharing my story. I feel very lucky to be where I am today. I’ve been able to return to work, building up the hours – my work has been very understanding. I can drive again and I look forward to having a future which before was uncertain.
My hope is that that by sharing my story, I can help people understand that brain tumours are indiscriminate and can affect anyone at any age. They can present in so many different ways and in my case, I feel that my symptoms were masked by other conditions.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure