living with brain cancer: 'it’s given me more compassion for people and their own experiences'
8 minute read
stuart selby's brain cancer diagnosis has allowed him to "redesign" his life.
paul hughes
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when stuart selby, a biochemist from toronto, ont., was re-entering his office after the worst of the covid-19 pandemic was over, he began experiencing what felt like panic attacks. he had several of the hallmark signs—overwhelming feelings of impending doom, difficulty speaking, and mixing up words.
the attacks would come on fast and only last a short time. but when they began happening far too frequently, upwards of ten times a day, stuart thought it was time to see a professional. he was sent to both a psychiatrist and a neurologist, and as it turned out, panic attacks weren’t the diagnosis. it was focal aware seizures.
“they weren’t the standard movie-style tonic-clonic, a lot of movement. it was more just a seizure that put me in a different headspace,” he said. “these moments of just weirdness.”
he then had an mri scan to see why these seizures were happening, and that’s when they found the tumour. the tumour turned out to be a grade 2 oligodendroglioma, a low-grade, cancerous tumour.
“after getting that mri, it was very fast. let’s go see a neurosurgeon. and i was asking, ‘hey, can i take my kids to wonderland this weekend? and the answer is ‘no. i think you need to be in my operating room this weekend. we need to take this out fast,’” he said.
getting the news that he had brain cancer
while stuart was waiting for his mri results, he and his husband took a trip out west to vancouver. since stuart came from a scientific background and could understand complex medical scans, he signed up for access to his medical scans online to have first access to the results.
while in vancouver, he and his husband were enjoying lunch when the email popped up on his phone. the results were in.
he pulled up the scans, read that he had terminal cancer.
“it wasn’t the best way of learning. i was sort of split. i looked at that and said, ‘this explains so much, but it also sucks.’ and then trying to tell my husband, i couldn’t stop the tears,” he said. “it was a roller coaster of emotions, and i think that’s probably quite normal.”
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stuart noted that part of him was relieved, happy even, to finally have an answer to what was going on within his body and causing seizures. but the answer itself wasn’t very promising.
he was then booked in for surgery to figure out what kind of tumour he had, how aggressive it was, and what he was really up against.
“there was a sort of hope for the best, but we know that even the best is challenging,” he said.
going through neurosurgery and the aftereffects
since stuart’s tumour was in a place in his brain, near to his temporal lobe, it was safe enough for his neurosurgeon to go in and remove as much as possible to both diagnose the specific type as well as get as much out as possible to slow the progression of the disease. he ended up losing about half a cup of his brain in the process, along with about 80 per cent of the tumour.
“the day after surgery, when i was in the mri, i realized that my left foot was paralyzed. i couldn’t move or feel,” he said about the aftereffects of losing part of his brain. “i’ve had changes in the way that my memory works. i can remember things i’ve stored, but i have to focus differently to make new memories.”
his ability to switch between tasks at work was also compromised because of the surgery, leading to an early retirement. while stuart’s ability to walk has been restored through the support and help from “an amazing team of people,” including physiotherapists, the long-term effects of brain loss are still apparent in his life.
“leaving my career, i was fortunate enough to be able to do that,” he said. “it was just difficult to keep up with the pace. even today, if i’m out with a bunch of friends and we’re talking about different things, i can’t follow. so long as i focus on one person, i’m mostly my normal self.”
he continues to learn on the fly and adapt to the changes, and he’s grateful for his ability to do that.
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finding the right treatment for the other 20 per cent
since the neurosurgeons couldn’t safely remove the entire tumour, because it would have negatively impacted stuart’s memory significantly, he was still left with a smaller bit that needed to be dealt with.
his neurooncologist and radiation oncologist were ready to start him on the next steps, which were chemotherapy and radiation. he was ready, too. however, as it turned out, there was another, more modern solution that he could access due to the type of tumour he had and the genetic mutation that drove its development.
“there is a new drug that’s now been approved by health canada … and it specifically targets this mutation,” he said. “it effectively let me wait before chemotherapy and radiation therapy. most patients need radiation therapy right away.”
stuart counts himself fortunate for being able to obtain the drug after clinical trials had closed, as he could be part of the wider-scale investigations that pharmaceutical companies conduct to ensure a drug can be safely administered to the masses.
the new drug was given to stuart, and the side effects were minimal, especially compared to chemotherapy and radiation.
“i basically got access to time in a tablet. this tablet keeps me in this space where i don’t need to ask the doctors to expose my brain to radiation,” he said. “it’s new enough that we don’t yet know how far it’s going to go.”
he notes that the drug itself has helped to slow the progression of his cancer, which is already a slow-growing tumour, but that there’s no way to tell how much time is found in those little tablets.
leaning into a new life with support around him
with his professional career behind him and brain cancer being his reality today, stuart was given the opportunity to create a new life for himself and his family.
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before his brain surgery, he made the decision to start building his support team by notifying all those closest to him what was going on, and what the end result could be.
he leaned on his family and friends, and then began seeking help in other ways, such as reaching out to support networks, including brain cancer canada and the brain tumour foundation of canada. he also participated in online support groups to speak to others in the same shoes.
“the one thing i found out quickly, never be afraid to ask for some assistance or help or even just to say i have this thing going on,” he said. “i think that the biggest help for me or the biggest improvement for me was just getting over that hesitancy to ask a question or to ask for help.”
before his brain cancer diagnosis, he was very career-focused, describing his former life as “fairly hectic” at work. at the same time, he tried to strike a balance between his personal and professional identities.
“i had a life that i really tried to balance work and family and friends, but work was a big piece of it,” he said.
now, stuart’s been given the chance to “redesign” his life, putting more precedence on the things that matter most.
“i’m making time to see family, to do more family things, to spend more time with friends, to get those vacations,” he said, later continuing, “it really has heightened my focus and what really is important to me. i think that’s something i hear from anybody with a significant illness, a terminal illness, just the ability to refocus.”
of course, even with the positives he’s gained from his experience, stuart still contends with the uncertainty of it all. not knowing how long the medication will work for. not knowing what the results of his next mri will be. and not knowing when he’ll receive news that’ll require even more adjustments to his already changed life.
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“it started as more just understanding how long do i have? and what will actually happen next? now, it’s more about just knowing that this is always sort of in the background,” he said. “there is still that cadence where i know at one point one of my mris will show that, okay, something else has grown and we need to do something about it.”
living with terminal brain cancer through compassion, positivity, and humour
stuart has learned a lot through his experience with brain cancer. he’s spent time researching and reading about the brain to better understand how it works, how memories are stored, and how people “anticipate things”, an educational quest that has led to a somewhat surprising revelation.
“i think learning more about how our brains work has given me more compassion for people,” he said. “people are actually kind of amazing, even when we think they’re being rude or stubborn or annoying. it’s given me more compassion for people and their own experiences by experiencing something a bit more significant myself.”
he continued, “i’ve realized, and we say this fairly often, you never know what this other person is going through, but now i’m also realizing that i never know what this other person’s brain is feeding back to them. it’s given me more understanding that our brains, they’re such intricate machines that we can’t predict what’s happening inside somebody else’s experience.”
stuart, whose sense of humour is very much intact, wants people to recognize that, while taking a deep dive into everything that is brain cancer may not be for everyone, it never hurts to know more signs and symptoms, and to always reach out when something feels off.
“brain cancer isn’t just one thing. it can be devastating. it can be fast. brain cancer, like so many things, has a lot of variability, and it’s more about maybe not being scared,” he said. “i go back sometimes to, i don’t know if it’s a silly thing, going back to kindergarten cop … the bit with arnold schwarzenegger and the kids, and he has a headache and the kid says, ‘it might be a tumour’ and he says, ‘it’s not a tumour.’ bad accent, but i think there’s something about this to not be afraid of the unknown. to always get help if we think something isn’t quite right … we owe ourselves the best opportunity to help that we can.”
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