Karen Courtenay

3 min read

Mum-of-three, Karen from South Cornwall, was 60 when she was diagnosed with a glioblastoma (GBM). She died just four months later after doctors initially thought her lower back pain was sciatica. Karen also experienced foot drop and weakness in her lower left leg. In May 2023, she had a seizure and a scan revealed the devastating news she had a brain tumour and her only treatment option was chemotherapy. Sadly, Karen became too poorly to continue and all treatment was withdrawn. She died on 15 September 2023. 

Here is Karen’s story, as told by her daughter, Kerrie… 

Around the end of February 2023, Mum started to experience symptoms of sciatica in her lower back. She also had foot drop and a progressive weakness in the lower part of her leg. 

She went to the GP on numerous occasions as they thought she had sciatica, she was referred for an MRI scan of her spine to figure out what was causing the pain. Results came back normal despite Mum getting worse and having to use a walking aid to get around. 

In a matter of weeks, she went from joining me at the yard, towing the horses, mucking out and going shopping, to being stuck at home unable to do any of that without the risk of falling and her foot giving way. The GP made a referral to neurology for further investigation. 

By May, Mum had been managing her pain and limited mobility well until we rushed to her as she lay screaming on the sofa as she felt pain throughout her body. I’d been working as a carer for around a year and had seen some of my clients react the same to muscle spasms. The same day as Mum’s neurology appointment we took her to A&E on the neurologist's recommendation. We were sent home, after being told, ‘it sounds like a nerve problem’ and told to wait for someone to call us from acute medical unit (AMU). 

Two days later, Mum had another episode, which we later found out was a focal seizure. This time I managed to capture it on video and sent it to the hospital. 

The next day, on Friday 26 May, Mum was called in to the hospital and had more tests in the AMU, which completely ruled out nerve damage as the cause of her symptoms, and we were then braced for something more serious. They requested an MRI, this time of her head. 

As soon as we arrived back in the waiting room, we were called to a meeting room where the consultant said: ‘it’s not good news I’m afraid’ and I don’t remember much after that. 

I knew something wasn’t right with Mum but I never expected that it would be a brain tumour. She had three lesions growing deep in her brain. Mum was in disbelief. When we left the room I could see the shock on her face. 

They checked the rest of her body for any signs of cancer, at this point we knew the lesions were cancer, but it was only in her brain. They noticed a shadow on her bowel but further tests proved negative for anything sinister. 

The day before Mum was due to have a biopsy, she had an episode of extreme pain this time in her right eye. Over 60 seconds her left arm went tingly and then she couldn’t move it. 

She was taken to hospital and a CT scan showed that the tumour had caused a blood clot. A week later, Mum had the biopsy in which the clot was removed, results confirmed she had a high-grade glioblastoma (GBM). We didn’t ask for the prognosis and instead decided to focus on a treatment plan. 

Doctors initially thought the tumour could be removed by an operation and the plan was that radiotherapy and chemotherapy would follow. However this was short-lived as the tumour was intwined in her brain which made it inoperable and radiotherapy not even an option. 

After meeting Mum, the consultant commented on how much fight she seemed to have and tried her with a low dose of oral chemotherapy and she seemed to respond well. 

Overnight, things changed and within two weeks, her face dropped on one side and she appeared vacant. She couldn’t show emotion and was sleeping for up to 16 hours a day. The oncologist saw her and we all acknowledged that the chemo didn’t seem to be having any impact on the cancer. They ordered an MRI scan to check if the tumour had grown, which was booked for around two weeks later. 

On Monday 11 September, before I left the house to go to the yard, Mum said she felt sick and was unable to take any medicine or support herself. When I returned home she was in a deep unconscious state and couldn’t wake up, though she was still breathing. After paramedics assessed her at home, she was blue lighted to A&E. As the team tried to fit her with breathing tubes, she was pulling them out so we knew she was responsive. 

After a CT scan we were told she had a midline shift (MLS) which refers to the displacement of tissue on the brain – likely the fast growth of the brain tumour. ‘Should your mum wake up, she would likely be severely brain damaged’. Suddenly we were faced with the heartbreaking decision to withdraw all treatment. 

Mum passed away peacefully, five days later on 15 September. 

She was the strongest woman I knew and remained positive every single day through this crazy journey. She was due to take part in our Walk of Hope on 23 September, we had it all planned, but sadly died eight days before. So far, we have raised more than £3,000 from this event, all inspired by Mum and her story. 

I hope that by sharing our family’s experience of this devastating disease, people will feel less alone and they will see that we are fighting to find a cure for all types of brain tumours. 

Kerrie Courtenay
November 2023

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 since records began in 2002. 

Brain Tumour Research is determined to change this. 

If you have been touched by Karen’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 

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