In August 2021, just a week after first displaying symptoms, and six weeks after her 60th birthday, Elaine Clevett from Littlehampton in Sussex was diagnosed with a glioblastoma multiforme (GBM). Surgery to remove part of the tumour led to Elaine suffering a stroke, and she was rushed into surgery for the second time, which left her with significant brain damage. Four months after she was first diagnosed with her brain tumour, Elaine died in Fulford Care & Nursing Home in Littlehampton on 1 December 2021.
Here is Elaine’s story, as told by her daughter, Heidi…
It was my daughter’s second birthday at the beginning of August 2021. During a get together for what should have been a celebration, that’s when I first noticed something was different with Mum.
She’s a classic Gemini, always chatty and talking to people, but on this occasion, she was really quiet. Even friends had noticed and commented about how out of character this was for my mum.
At first, my family and I thought she may be exhausted. For three days every week my daughter, Ivy, would stay with my parents and my mum would look after her. After a break from childcare, my mum still appeared worn-out and a little worse than before.
Rather than wait for two weeks for a GP appointment, my dad and I took mum to A&E at Worthing Hospital to help find answers to her change in behaviour and whilst there, Mum kept forgetting where we were and the reason why.
“Doctors did a CT scan of her head which showed a tumour on her frontal lobe which was the size of an apple.”
It was a huge shock made even harder because Mum couldn’t comprehend what was going on.
She was admitted to hospital and put on steroids to help with the swelling caused by a build-up of fluid on her brain, and it was downhill from there. Mum lost her short-term memory and couldn’t understand why she was in hospital, let alone that she had just been diagnosed with a brain tumour.
The doctors thought my mum had a glioblastoma multiforme (GBM) and we were told a craniotomy was the only option to remove as much of the tumour as possible, and they would later confirm the type of tumour she had.
Mum stayed in hospital while she was on was on the course of steroids but she was keen to go home and eventually doctors agreed she could go back to live with my dad at their home in Littlehampton and carry on with her medication.
In between leaving hospital and waiting for Mum’s operation, my brother, Peter, was due to get married on 11 September; this was the third time it had been re-arranged, due to the pandemic. Surgeons could see how important this day was for the whole family, so they suggested to delay the procedure so Mum could attend the wedding, which she was so desperate to be part of. She had brain surgery just a few days later, on 16 September.
When I think about it, I never really got to speak to her properly again after that.
Six weeks after her symptoms first started, Mum had the procedure at Brighton Hospital and was in surgery for four hours. They thought the tumour had spread to both hemispheres of her brain.
“When she came out of surgery, she immediately suffered a bleed on the brain which caused her to have a stroke and she was rushed back into theatre, where surgeons decided the risk was greater if they left things as they were.”
The whole tumour was removed during a further five hours in the operating room and with it, many healthy cells were taken, which left Mum with significant brain damage.
She remained in a coma for five days and showed no signs of coming round and was on life support. Tests showed that mum was suffering from salt wasting due to a lack of salt in her body. After two weeks of treatment to correct her salt levels, she started to come round. She would be awake for an hour or two each day, still unaware of what she had been through and what was going on.
It was two-and-a-half weeks after the operation before we had confirmation that Mum’s tumour was an aggressive GBM. When we went to the hospital in-person, I wasn’t prepared for seeing my mum in that state. She was hooked up to lots of machines, very confused and speaking about random things. Her head was swollen from everything that she had been through and the combination of seeing her like that and how quickly everything had happened was shocking.
A follow-up scan showed no signs of the cancer on her brain, however due to the amount of brain damage, Mum was not in a position to have any further treatment and spent the last month of her life in a nursing home close to where she lived with my dad.
This made it a lot easier for people to visit as we weren’t restricted to numbers. Mum passed away on 1 December 2021, having survived 15 days with no food or water. In the end, she lost the ability to talk and it was almost as if she was in a coma.
My family and I didn’t know much about brain tumours before Mum’s diagnosis so we did a lot of searching on the Internet and was horrified by the statistics we read from Brain Tumour Research.
What happened to my mum didn’t seem fair and I want to be able to put my mind to something positive and have decided to set myself a challenge of walking non-stop the 106km distance around the Isle of Wight within a 24-hour period, to raise as much money as I can to help find a cure. 
Research on this type of cancer is extremely difficult, in part due to only 25% of glioblastoma patients surviving more than one year. More research is desperately needed to understand this illness better – there is currently very little understanding of the disease, no understanding of the cause and minimal treatment options available to those afflicted.
Heidi Clevett
February 2022
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.
If you have been touched by Elaine’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