JO Knight was only 40 years old when she began developing unexplained and unusual symptoms.
She would experience panic attacks, and blurred vision headachebut when she went to the GP, the self-employed cleaner was told it was stress.
Incredibly, Jo struggled with her debilitating condition for over a decade until she finally collapsed after a seizure at her aunt’s London home in 2016.
After being taken to hospital, Jo, 52, from Southend-on-Sea, received the devastating news she had brain tumorwhich had probably grown in the last ten years.
“In 2005, while I was dealing with the death of my father, I went on a dream vacation to California with my husband Ivor, 71,” says Jo.
“But something was wrong. I wasn’t feeling well and felt like something was pressing on my head.
“Later that year I was in a meeting at my local church when all of a sudden, out of nowhere, I had a panic attack.
“My head felt weird and I couldn’t breathe. I started hyperventilating.
“But when I went to the GP they put it down to stress and grief over my father’s death.
“I’ll never forget the doctor saying, ‘What’s wrong? Why are you here? You’re never sick.’”
“I’ve had depression in the past and I think that immediately made her think I was stressed and anxious. I was prescribed antidepressants.”
But when Jo started to develop vision problems, experiencing twinkling stars and strange visions, especially at night, she became worried something else was wrong.
The dull pain in her head also came back, but when she went back to the family doctor, she was fobbed off again.
“I remember saying, ‘I’ve got a weird pain in my head that might have nothing to do with it.’
“All he did was feel the top of my head and say, ‘Do you have anyone at home making a fuss about you?'”
Eventually Jo stopped going back. She says: “I felt patronized, like I was paranoid or a hypochondriac. But I wasn’t one who ever went to the doctor.”
The symptoms continued, with the cleaner having visions at least once a month.
Then, in 2016, Jo felt tired while working a few odd jobs at her aunt’s house.
She thought she saw faces in the flowers in the garden and then collapsed.
“I had a seizure out of nowhere and passed out. My aunt called the paramedics and they took me to the hospital,” she recalls.
“I thought I passed out because it was a pretty hot day, but then they told me I had a brain tumor.”
Further testing revealed that Jo had a grade 3 glioma on her right temporal lobe.
After a biopsy, a neurologist told Jo that her tumor had in all likelihood been growing over the past ten years and that what started out as a low-grade tumor was now a high-grade tumor because it had been ignored.
Heartbreakingly, Jo was told that surgery was not possible due to the tumor’s location in the brain – but there would have been a window of opportunity when surgery would have been possible had it been spotted earlier.
I was relieved that I wasn’t actually crazy
Her initial prognosis was two to ten years.
At first Jo wasn’t angry. “I was told that the best thing they could do was try to stabilize it and keep it under control,” she says.
“I was relieved that I wasn’t actually crazy – there was something is wrong with me.
“The diagnosis put an end to all the uncertainty and not knowing what was going on.
“Finally I could go ahead and get the treatment I needed.”
Before Jo’s diagnosis, her husband had been diagnosed with myeloma, a form of blood cancer.
Jo was so impressed with the care her husband received at the Royal Marsden Hospital in Sutton that she asked to be transferred there too.
She received radiation daily for six weeks and then underwent chemotherapy, which she took in pill form at night, for eight months.
The tumor has not shrunk but fortunately appears to be stable.
Jo has check-ups every four months and takes anti-seizure medication.
She says: “I think the side effects of radiation and chemotherapy never really let you go.
“I feel tired and exhausted and can only do my cleaning chores part-time.
“My clients, who I’ve had for 20 years, have been really understanding.
“But lately I’ve found that the physical effects of physical work combined with my illness mean that I’m often tired.
“Sometimes I come home from work and I just have to lie down for a few hours.”
“Every year 12,000 people are diagnosed with a brain tumor”
ALEX Lochrane, Executive Director of The Brain Tumor Charity, said: “This Brain Tumor Awareness Month is an opportunity to highlight the need for advances in brain cancer.
“As Jo has learned, brain cancer symptoms are often difficult to distinguish from signs caused by other conditions, such as stress.
“Brain tumor symptoms can include headaches, blurred vision, and nausea.
“Although brain tumors are relatively rare, it’s important to recognize the possible signs – especially if symptoms are persistent and/or you have multiple of them – it’s important to see your GP.
“You can also contact us on 0808 800 0004 if you have any concerns.
“Around 12,000 people in the UK are diagnosed with a brain tumor each year and while we have seen some encouraging advances in both research and care in recent years, we know progress is not moving fast enough and we must act now.
“We now need to invest more in world-class research to diagnose the disease earlier, better understand its causes and find new treatments to give those affected hope for longer life and a better quality of life. ”
Jo takes care of her husband, who can no longer work as a gardener, and also takes care of her mother Jean, 73, who has an acoustic neuroma (a benign brain tumor).
But she is determined to keep a positive outlook on life.
“I worry more about my husband’s scan results than my own,” she says.
“But there’s always a sense of uncertainty and worry when it’s my turn.
“Now I’m trying to look at it positively.
“We try to enjoy life as much as possible and save up for a dream trip abroad.
“I’d love to go to Hawaii, but any place that’s hot and has a beach will do!”
“I keep fit and healthy and eat lots of vegetables and fresh produce.
“I had given up meat before I got sick. But I like a glass of wine, so I’m not giving that up.
“I take cannabis oil, which is believed to fight brain tumor growth.
“Swimming is my favorite thing – I try to walk at least three or four times a week and when I’m in the water I forget about everything else.”
SO MUCH SUPPORT
The support Jo has received from both Royal Marsden and Brain Tumor Charity has also been invaluable.
“Whenever I’m feeling down or worried about another symptom, I can look at the Brain Tumor Charity’s Facebook page and chat with other people with brain tumors.”
This month is Brain Tumor Awareness Month, when people share their experiences of living with brain tumors as part of the charity’s Voices For Change campaign.
Jo decided to tell her story to prevent anyone else from going through what she went through.
“I’m trying not to think about it too much, but I’m angry that no one’s gotten to the points and been like, ‘Oh, she keeps coming back with these symptoms and we need to investigate further.’
“Instead it was like, ‘Keep taking those pills and running, stop worrying.’
“Not enough is known about brain tumors and we need to listen to more.
“If I can share what happened to me and it helps someone else, or hopefully a few more, it’s worth it.”
https://www.thesun.ie/health/8580951/my-panic-attacks-were-blamed-on-stress-for-a-decade-but-it-was-a-tumour/ My panic attacks were attributed to stress for a decade