May is Brain Tumour Awareness Month!
To raise awareness, we will highlight stories from the brain tumour community. Today we read about the challenges of living with a non-malignant brain tumour.
Vicky is patiently awaiting her turn for surgery. Almost two years since being diagnosed with a brain tumour, she is ready for some relief.
“I want it out,” said the 34-year-old mother of two. “Your brain is only so big. When something is in there that’s not supposed to be, there is only so much room before it causes a lot of damage.”
Her slow-growing brain tumour, known as an acoustic neuroma, is considered non-malignant. However, it affects her quality of life daily and could become more aggressive, so she is having the mass removed. But it will come at a cost. Vicky will lose her hearing in her left ear.
The “bad luck tumour” as she refers to it, had likely been growing for about 10 years before it struck a nerve and got angry. Within a day, she developed a debilitating headache, vertigo and fatigue.
Vicky, who works at a nursing home, went to work thinking her headache would get better. But as the day went on, she became the patient.
“By the end of my shift I felt so bad and my balance was off. I had to hold the railings to stay up. I didn’t know if I would even be able to drive home,” she recalled.
Four days before Christmas, and two MRIs within 24 hours, Vicky was given the news.
“My doctor sat down and said I’m not going to waste your time or beat around the bush – you have a brain tumour.”
The diagnosis was just the beginning of her challenges of living with a non-malignant brain tumour. Just getting anyone to take her symptoms seriously was a battle, let alone trying to manage life with a brain tumour.
People, she said, often dismiss the signs as depression, anxiety, just headaches or fatigue.
“They tell you just pop a Tylenol and you will be fine. It’s all your head,” she said. “Just because you can’t see it, doesn’t mean it doesn’t exist.”
Although she may look fine, Vicky said, everyday tasks that are effortless to others are a lot of work for her. She added, just getting out of bed takes more work than normal.
“I have to sit at the edge of the bed and balance myself first, then start my day… I can’t go tobogganing with my kids because my brain can’t keep up and I will black out.”
She has even had to secretly grab onto her nine-year-old daughter’s hand to help keep her balance to walk. And her symptoms are progressing. With the tumour now pressing on her facial nerve, she is experiencing numbness and tingling on the left side of her face.
But she pushes through as she doesn’t want to “play the tumour card,” admitting there is a stigma attached to having a non-malignant brain tumour.
Her experience has made her look at her job differently and has given new meaning to the old adage don’t judge a book by its cover.
“I definitely see things differently now. When a patient tells me they don’t feel well, but look fine, I believe them. I get it.”
Vicky recently had another MRI and is hopeful the 10-hour surgery to remove the tumour will proceed this month. She understands there are more priority and emergency cases, but each cancelled appointment leaves her feeling more depressed.
“I am important too,” said Vicky.
There is nothing benign about a non-malignant brain tumour. All brain tumours invade precious space inside the brain and can cause a range of signs and symptoms. Treatment for non-malignant tumours is often the same as cancerous tumours. You can learn more about these tumours in our Non-Malignant Brain Tumour Handbook or online at www.braintumour.ca