Features | Floating in grey matter

What I learned about support through my experience with cancer

I would not be writing this without the support of all my friends and family.

It has been three Movembers since I was diagnosed with brain cancer.

I was first diagnosed during the summer of 2012 while I was working at a summer camp in Muskoka. Part of my job was getting the site ready for campers. I would spend my days raking up leaves, packing them into burlap sacks, and dumping them in a pile. Within a month on the job, the pile began to resemble a small mountain. I would also chip off the faded paint from cabins and then paint them back the same dark brown. I would do this along with other meticulous maintenance jobs while taking routine breaks, dips in the lake, and other entertainment only found in the woods. On one of the earlier days at the job, I was driving the camp truck to move some paint materials from one end of the camp to the other. The truck was finicky at best, and it was while I was driving down a steep hill that I lost control of the vehicle and slid off the road.

Luckily I was not driving very fast and didn’t incur any major injuries. I did, however, hit my head on the steering wheel when the truck collided with the curb. I had to go to the hospital. After about four hours there I was cleared to go, leaving only with a minor concussion, told that I would be fine within a few days.

Within the next few days I began to feel nauseous and started throwing up – a clear sign another visit to the hospital was needed. This time I had a CT scan. Unbeknownst to me, it would the be the first of many I would have. I headed straight back to campground after the scan was done, and took it easy for a few days. My headaches went away, I didn’t feel nauseous anymore, and I was back at work in beautiful Muskoka. I was ready to get on with my summer.

I woke up to another cold morning in my cabin, to an average day of work. I stumbled out of bed, wiped the sleep out my eyes, and got dressed, pulling my heavy wool socks over my feet. After throwing on my work boots, I climbed into the back of the camp’s rusted, old pickup truck, the same one I crashed a week earlier, to drive myself and the rest of the crew to the shop where we stored our tools overnight. It was a day like any other.

While at the shop, the crew and I started a game of basketball, and it was then that I got a call from my dad. His voice was shaking, and I could tell he was trying to be calm and collected, but right away I knew something was up. He told me the CT scan had found something unexpected, and far more ominous than I ever could have anticipated. The scan showed I had a low-grade glioma in my left frontal lobe – a brain tumour, a cancer that would envelop my life. I stood there and felt nothing. Fuck.

Cancer was not a new concept for me. When I was ten, my father was diagnosed with cancer. A good part of my childhood was shaped by this experience. But what my own scan showed was a different experience altogether. I was a healthy 19-year-old (casual smoker) who had just finished his first year at McGill. This tumour, I was told later by doctors, could have been living in my brain for the past ten years, and I would not have known had I not crashed the camp’s truck. How could this happen to me? It wasn’t fair; I had never heard of anyone my age having cancer, and now all of a sudden it was part of my identity. I had no symptoms. I had no warning. I had no reason at all to question my health in any way.

I stood there, completely emotionally shut down. Numb, I even went back to work the same day – despite protest from my co-workers. Brain cancer, you don’t survive that. Brain cancer – the most important part of my body is infected with a serious disease, with the potential to end my life. I truly thought I had come to the end of the line.

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The surgery

There are two approaches to dealing with brain tumours: wait and see, or go in and operate. Since I did not have any symptoms, one of the surgeons that my family and I consulted supported the wait-and-see method. Despite this, and after much deliberation with my family, I decided to have surgery. It came down to me simply wanting the tumour out of my head.

I had surgery in the the winter of 2012; it was an eight-hour awake craniotomy. Before the surgery, I underwent an elaborate series of cognition tests, mostly involving recognition, where I was shown an image and had to identify it. The doctors kept me awake during the surgery so I could answer the same questions as before. They did this in order to map my brain function during the surgery, and ensure they were not removing healthy tissue.

Being awake also meant that when my skull was cut through with a electric bone saw, I felt completely present. I still remember the sound. It was like nails on a chalkboard, and I felt the vibration shake my head back and forth, despite it being secured by a head brace. I remember having a seizure midway through the operation. I remember the nurses squeezing my hands to let me know I was going to be ok, and the pain of having 57 staples in my head. I remember all of this, and I hope to never forget it because it was the hardest experience of my life and I survived – though I was never alone.

When I got back to McGill I told my friends that I had a brain tumour and needed surgery to remove it. The reaction I got was better than I ever could have expected. They were always there for me, and even organized a benefit concert to help cover the cost of my surgery. Without their help, I don’t know what I would have done, or how I would have coped. We laughed together, sometimes cried together, and got through it together. I had amazing people by my side and I am so lucky to have had them there. Not everyone is fortunate enough to have this kind of support, and it certainly made all the difference in my experience with cancer.

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De-corporatizing cancer support

This is the month of Movember, a campaign that aims to support and raise awareness about prostate cancer. I do not suffer from prostate cancer, but I do have experience with cancer, and have been subject to different support initiatives as a result. By no means do I want to say meant to speak on behalf of all, or any, cancer survivors except for myself, but I want to state that I don’t need or want the type of awareness that Movember and similar campaigns facilitate.

Movember is a time when well-intentioned people grow facial hair and collect money for cancer research so they can feel like they are supporting people with cancer. I feel campaigns like this, which are riddled with gimmicks and slacktivism, distract – if not completely distance – us from those who are really at stake, as well as the substantial methods of support outside these highly corporatized self-benefitting campaigns.

Corporations are quick to jump on as sponsors of campaigns that claim to aid people with cancer because it is good advertising and PR, but this then again misses the mark in committing to supporting cancer survivors in a meaningful way. The idea of Movember is good in theory, but falls short of affecting real change in its complicity in the corporate cancer machine that capitalizes on people’s suffering. It is just another self-serving device in a pool of capitalized cancer initiatives.

When I first found out that I was diagnosed with brain cancer, I went to a hospital in Toronto. Since I am from Ontario, I was covered by the Ontario Health Insurance Plan (OHIP). I quickly became familiar with the financial constraints of Canadian healthcare, and the real limits that cancer survivors may face. I went to my local hospital to meet with the brain surgeon and discuss the approach that would be taken with my surgery. According to the surgeon, I would spend six hours under observation in the hospital and be sent home afterward. Six hours for an awake craniotomy – an incredibly challenging and complicated surgery – did not seem sufficient to ensuring proper care of a patient. But in the Ontario healthcare system, this apparently makes a lot of financial sense.

Cancer is an incredibly expensive disease to have. Hearing about the six-hour observation prompted me to follow up with research on why this would be the case. What I learned was that because Canada’s healthcare system is publicly funded and not-for-profit, doctors claim to need new and unique ways of conducting surgeries. These ‘new and unique’ ways resulted in more limited patient care, such as day surgery.

The idea of cancer patients spending only six hours in hospital and later going home offers the healthcare system a saving of approximately $1,140. This shows how desperate the Canadian healthcare system is to save money. If outcare is being cut back on, which one would imagine would be a priority in a healthcare system, it begs the question of what cuts are being made on the research side.

With this in mind, taking the example of Movember again, which claims to have raised $147 million last year, I do not doubt that it has made a difference, but in the grand scheme of things, it is just a drop in the bucket, and is not going toward ameliorating the above issues.

The effort to raise awareness about cancer is appreciated, but I do feel that the method is misguided, and even misplaced. Raising money through quick-fix slacktivism is just a band-aid solution. Cancer is a very expensive disease. My surgery alone cost around $100,000. A better use of resources would be if the participants of Movember lobbied and protested the government to make healthcare more accessible. The more accessible healthcare is, the more benefits and care cancer survivors will receive. If you want to help survivors, fight for this, not essentializing moustaches.

The October a year after my surgery, I was back at school and was starting to feel like myself again. I was just ready to get my life back on track. However, it was that fall that I was flooded by a sea of pink. Everywhere I looked in October there was pink. It was on so many products targeted toward women – yogurt, wine, butter, everything. It has been reported that certain companies’ donations to the cause are meagre at best. For example, Campbell’s donated about 3.5 cents for every can of soup it sold. Similarly, if you were to raise a mere $36 to fight breast cancer with the Yoplait cancer campaign, you would have to eat three cups of yogurt each day for four months.

So how much does this actually help? Do I feel supported when I walk in to a supermarket and see chocolate bars with a cancer ribbon? Not really. It is this lack of sensitivity that is alarming and realized through the whole month of October. It surprises me that nobody ever thought that maybe filling a grocery store full of merchandise that claims to support cancer is very triggering for people who have survived it. While it might make you feel better because you are supporting the cause, you’re not the one that has to deal with the disease. One cancer survivor told the Boston Globe that October is a difficult month for her because she is constantly reminded of her disease. She said, “I want to buy my English muffins and not be reminded of it while I’m waiting for results to come in.”

The difference between this and year-round events are that they focus on helping the survivors and those affected. These groups also usually offer free counselling and education sessions. These are the sort of groups that need support, not just companies that slap a pink logo to commodify a struggle so they can profit.

Meaningful support

Movember raises awareness about prostate cancer, but does so in a limited way. By growing a moustache and raising money, participants are privy to the gratifying sense that they are helping, that they are making a difference, that they are supporting survivors. Somewhere along the way, participants might feel a sense of inflated significance of their support’s value – even to the extent of a sense of entitlement over change. I’d like to call for a more substantial and direct approach to support than growing a moustache, or dropping money in a jar on your way out of a depanneur.
Real, substantial support is not about arm-length, momentary actions such as this.

You never forget that you have cancer. Sometimes you just want to try not to think about it. When I got back to Montreal, I started to notice that whenever I would go out with my friends, there would always be that one person in the room who I had maybe talked to once in my life, but who had heard about my surgery through friends of friends of friends. They would rush up and ask me how I was and if I was okay. They’d say things like, “Hey man, if you ever need help give me a call.” Though clearly well-intentioned, I often felt situations like these made me feel the need to compromise my comfort level so that others could feel like they had done a good deed for the day.

I was left wondering what their stake in caring was beyond this. Living with cancer is a very real thing that I have to deal with everyday. I don’t feel I need reminders, and I certainly do not need sympathy. Thanking people who essentially amount to strangers puts me in a position where I have to validate their feel-good deed. It really does very little to help me beyond reminding me that yes, I do have cancer.

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Personal support

Campaigns to raise awareness or raise funds for cures often obscure the most influential support that is needed for people with cancer. It centres and congratulates the supporter, rather than the person in need. What might be more effective is moving away from centring the supporter, and refocusing on the survivor: allyship.
Allyship removes the onus on the survivor to explain themselves, to validate your concern, and other extensions people make in an attempt to help. It means asking how they would like to be supported, and not telling their stories, or claiming knowledge over their experience.

Before I had surgery I was dealing with a lot. The average student juggles much more than academics alone, and having added medical appointments and stresses definitely did not make things easier. My friends were good allies because they addressed my needs the way I needed them to. They didn’t give me patronizing sympathy, nor did they try to be overly sacrificial. They treated me like the same old Drew. If I wanted to talk about what I was going through, they made themselves available to listen. This was exactly how I wanted to be supported and it made all the difference for me.

Unlike quick-fix coin boxes, pink merchandise, and unattractive facial hair, being an ally is an ongoing commitment. The best way to support cancer survivors is to treat them with the dignity of this commitment, rather than the former. Financial help does make a big difference, and fundraising is a significant aid, but once a year is not enough, and monthly donations are far more effective, as is calling for healthcare reform. Cancer survivors aren’t the neatly wrapped corporate fun-and-games that you can just buy. They’re people and they should be the motivation for the cause.

I truly believe that people that are taking part in Movember, pink ribbon campaigns, Livestrong, and all the others have their hearts in the right place. But this type of support needs to be challenged. More direct care can make a much more meaningful difference to cancer survivors. Growing a moustache does not help me fight cancer, nor does buying Becel. I’m not sure how people think it does. If you want to do something with your hair to be in solidarity with cancer survivors, shave it off, something many people working in cancer wards do to support their patients. Monthly donations to hospital funds are much more directly beneficial.

It’s been a long journey, I’m not jaded, or mad, or looking to give people a hard time. I just want to live my life, a life that will always be filled with routine cancer screenings, clinical trials, and the various other medical exams that come with having cancer. This is my reality. If you want to help me and others with similar realities, do more than just supporting these slacktivist campaigns, because frankly, they don’t cut it.

If you would like to get in contact with the writer, you can email him at drewwolfsonbell@gmail.com

 


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