Since the brain controls all bodily functions, any brain tumour, whether malignant (cancerous) or not, is scary and complicated. Depending on the tumour’s location, symptoms can vary, treatment options can be limited, and surgery might not be an option.
Not so fun facts
There are more than 120 types of brain and central nervous system (CNS) tumours.
Those 120 types of tumours fall into approximately six main categories.
The most common type of primary malignant brain tumour is Glioblastoma, which is also one of the most-deadly brain cancers. GB falls under the Astrocytoma category.
Non-malignant tumours account for almost two thirds of all primary brain tumours (those that haven’t developed from another source).
27 Canadians will be diagnosed with a brain tumour every day and eight of those diagnosed will be cancerous.
More children die from brain tumours than any other childhood cancer.
Symptoms of a brain tumour can include changes in behaviour and thought processes, dizziness or unsteadiness, problems with vision and/or hearing, frequent headaches, seizures, and nausea/vomiting in the morning.
In Canada, May is Brain Tumour Awareness Month. Internationally, Brain Tumour Awareness Week is from October 28 to November 4, 2023. Brain Cancer Awareness Day is October 24th in Canada.
Dean’s Story
To help demonstrate the reality of brain cancer, Dean, from Ontario, agreed to share his story.
Brain Cancer Diagnosis
In September 2021, Dean showed his first symptoms of brain cancer. He was at the school where he was an educational assistant for special needs children. He was with his colleagues when he heard a popping sound (like a lightbulb breaking) followed by double vision and the inability to speak. He was aware of everything going on around him, but he couldn’t tell anyone what was wrong and that he needed help.
Since Dean couldn’t speak, someone gave Dean a pen and paper, hoping that he could tell them what was wrong. Dean tried writing with one hand without success. While he wanted to write, “I need help,” he wrote the word, “underneath”. Dean tried writing with the other hand, but the result was the same… “underneath”. Dean’s colleagues suspected he had a stroke.
Dean’s wife, Margie, was called, but she was 20 minutes away. Within the time it took for her to get there, Dean improved to the point where he was walking out of the school when she arrived. While he seemed to be back to normal, Margie wanted answers and took him to the hospital. Unfortunately, because of COVID restrictions, she could not go into the hospital with Dean. Instead, Dean and Margie communicated by text. When the problem was diagnosed as a migraine, they disagreed with the diagnosis and advocated for magnetic resonance imaging (MRI).
Many hours later, when an MRI was done, a “glimmer” of something was found. It was not clear what it was, but the cause of Dean’s symptoms was definitely not a migraine.
Dean was referred to a doctor at the Juravinski Cancer Centre in Hamilton. Three months after Dean’s first MRI, he had a second one, only to discover that the original glimmer was now a lesion. Whatever this was, it had grown quickly, so the suspicion was that it was malignant (cancerous). A month later, in January 2022, a biopsy confirmed the suspicion. Dean was diagnosed with brain cancer, specifically, Stage 4 Glioblastoma (also known as GB).
Treatment options
The location of Dean’s brain cancer means that removing it surgically is not an option (inoperable). Instead, the only options are to slow down the progression of the disease. To do this, Dean has had both chemotherapy and radiation at the same time. His chemo was in a pill format, but the drug loses its effectiveness after 12 months. While the tumour/lesion has not grown, new lesions have appeared. Dean is now taking a different chemo drug to try and prevent the growth from reaching the ventricle (a type of valve) that, if not closed, could allow the cancer to get into the spinal fluid and spread throughout his body.
Progression and impacts
Since Dean’s diagnosis in January 2022, he has experienced the following:
Another seizure (now recognized as what occurred at the school when Dean had his first symptoms)
Increased weakness on his left side, which now requires him to use a wheelchair or walker
Being more emotional than usual
Struggling sometimes to find the right words and sometimes to speak
Counter measures
For his emotional health, in the early days of Dean’s diagnosis, some of his emotional support came from an unexpected source. To reduce the amount of time spent travelling between cities, Margie and Dean found accommodation at Mark Preece Family House, which included a separate room for them and a shared kitchen. Ironically, it was this shared kitchen that allowed them to interact with other people who understood what they were going through. They were strangers, but they understood.
But family and friends have, and continue to be, the key to Dean’s journey. In one word, they have been “amazing”. There is one adventure after the other and, even if it doesn’t go as planned, there is always laughter. If anyone needs emotional support, they lean on each other. After all, as the saying goes, “It takes a village.” When they aren’t there, Monty Python picks up the slack.
For his cognitive health, Dean likes to listen to a lot of music, watch educational TV programs (especially science), and do Sudukos. He also does a radio show of music (hard core metal) on cfru.ca every Thursday from 10 pm to 2 am. Dean has been sharing this music with his listeners since 1989. To stop now would make things worse for him instead of better.
For his physical health, safety measures are in place to reduce the risk of injury, particularly from falls. He also has a lot of physiotherapy to improve/maintain the functionality of his limbs.
Next steps
There are no clear steps. The thing about any cancer is that the only constant is change. As the cancer changes, so do the treatments and the emotional impact on not only patients, but the people who love and care for them. For now, chemo and laughter are the best medicines.
Resources
If you or a loved one has a brain tumour, check out the following resources:
Brain Tumour Foundation of Canada (https://www.braintumour.ca/)
Handbooks
Information sheets
Educational videos
Webinars
Caregiver specific
Brain Tumour Foundation of Canada: Caregiver Support (https://www.braintumour.ca/care-support/caregiver-corner/)
Handbooks
Private Facebook support groups where one is specific to caregivers
Bill of Rights for Caregivers (an excellent reminder that it’s okay to need help and time to yourself)
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