Today I’m celebrating five years since I received the official phone call telling me that I had cancer.
“Five year survival” is one of many statistical measures that cancer researchers and healthcare teams use to gauge the effectiveness of treatments and interventions, as well as to provide prognoses to people who have cancer. Five years is kind of an arbitrary amount (kind of not). Obviously, our number systems are base-10, half of ten is five, so it’s a common number to use. Personally, I find the number five fascinating for how much it recurs in nature, in both simple examples (five fingers, five toes) and more complex patterns (a pentagon’s ratios are golden ratios are the Fibonacci sequence). So, for any or all of these reasons, it feels like a big deal that I’ve survived cancer for five years, an outcome that had about a 13-18% probability.
If you’d like to celebrate with me, please donate to one of the organizations that have had a significant impact on me through my cancer journey:
- Young Adult Cancer Canada focuses on supporting young adults living with and beyond cancer through retreats, conferences, support groups, and much more. I’ve found such a strong and supportive community in YACC that has truly helped me thrive through my cancer journey.
- Wellspring Alberta helps people affected by cancer at any age with a variety of supportive programs including arts, exercise, health, finances, social activities, and more. I’ve been benefitting from Wellspring’s free programs since my diagnosis and always learned so much.
- Tip of the Toes (Sur la Pointe Des Pieds) takes young people living with cancer on therapeutic wilderness expeditions to regain self-esteem, build hope, and find connection. I believe so strongly on the power of nature in the healing process, and am so thankful for the incredible work this small foundation does.
- And if you can’t donate at this time, reach out to a friend you haven’t heard from in a while, say hi, and tell them why they’re special to you.
Now onto some juicy stuff. There’s a lot of change and growth that happens in five years. Even though much of what I’ve learned has to do with a disease I would have never chosen, I am grateful for the lessons I’ve learned because of it. So, here are five things that were actually big learnings for me in the last five years:
- Everybody is different and everybody’s cancer is different.
I am pretty amazed how incredibly diverse cancer is. Before my diagnosis, I hadn’t thought too much about cancer. I thought cancer was the same thing just in different parts of the body. But there are so many different kinds of cancers, complex reasons for cancer, and even a single kind of cancer can have many mutations. The way different bodies respond to the same treatment is also varied.
Scientists and researchers around the world are learning how to target all the different kinds of mutations. It’s exciting to see so many discoveries that lead to better individualized approaches to treatment decisions. When I was diagnosed, my tissue samples were biopsied and tested for mutations that would inform the kinds of treatments chosen for me. But, it’s more than even that. Understanding that everyone is different has reinforced how important it is to listen and understand before “fixing.”
Just like getting to know an individual’s cancer before prescribing treatment, I want healthcare teams and supports to know the person too: What do they live for? What are their goals? What are the no-go’s? For me, I don’t mind tolerating certain side effects so I can continue to live, experience Earth’s joyful wonders, and do my little part in making the world a better place for as long as I can. But what if the side effects took away my ability to do what I love? Everyone must make that judgement call for themselves, and I hope each individual is supported in making the choices that are right for them.
- Advocacy is so much more than what I expected.
Advocacy should be easy and accessible for everybody. Anyone should be able to get answers about their own health, have respectful discussions about treatment decisions in order to make choices that align with their values, and have concerns not only believed, but addressed without a fight. If that all happened, perhaps self-advocacy would not be as foreboding and difficult as it is. In general, I have a lot going for me that helps me advocate for myself and be heard. And yet, my concerns still get dismissed, treatment discussions have to be rehashed, and frankly, my own strength to advocate falters as I try to keep up with a brain that works at half-speed.
Even with skills such as good communication, organization, and curiosity, I can’t deny that my lack of medical knowledge feels like a huge hinderance in advocating for myself. I had a steep learning curve in how to read imaging reports, understand bloodwork, read medical research papers, and look for clinical trials. I don’t have the experience of someone who sees people with cancer everyday and that is an enormous gap. Luckily, support groups help to share information and topics that help with self-advocacy, and I’m thankful I have access to many such groups.
But even with all this, I get tired and I get frustrated, and the work I do never feels like enough. And I say this realizing, gratefully, that I have a privileged set of acquired skill, personal characteristics, innate privileges, and unfettered access to pay-walled research (and technology) that improve my ability to advocate more effectively. The fact still remains, I’ve needed help from loved ones coming to appointments with me, from doctors not rushing me, from other patients sharing their own research and experiences with me, and from countless people coming before me to make changes in the system—and I believe those supports are a vital part of effective advocacy as well.
When I first heard “advocacy,” I thought it was simply stating my needs and standing up for those needs. It is. But access to information, support to interpret that information, and support with skills outside of my wheelhouse are also necessary. Furthermore, self-advocacy is far easier when you have a healthcare team willing to listen. Like so much in life, effective advocacy is carried out by community.
- Self-compassion isn’t letting oneself go.
A couple years ago, my psychologist encouraged me to explore self-compassion. Up to that point, I thought self-compassion was saying things to myself like, “oh, it’s okay that you didn’t do that thing that’s important to you today, you can try again tomorrow.” It didn’t really work for me. After taking a self-compassion course, reading Self-Compassion by Dr. Kristen Neff, and working through a lot of exercises and practices, I realized that self-compassion is so much more than accepting imperfection. I realized self-compassion is also finding ways to make things better in a kind and supportive way.
For instance, one day I went to the pharmacy—my final errand on a full, hot morning. I was irritable as I waited in the ever-lengthening line, I tapped my foot aggressively and glared at the confused customers ahead of me who were asking too many questions. Later that day, I felt ashamed at my unkind behaviour. I could have just said to myself, “it’s okay, just behave better next time.” But that’s not really self-compassion. I had to recognize how stressed going to the pharmacy makes me, and provide myself the comfort I needed in that moment. I also made a supportive plan for myself to use inn future. Next time, I would go to the pharmacy first or not run so many errands in a day, and if I did notice myself feeling irritable, I would put my hand on my shoulder to ground myself. And then, I supported myself in making those changes because they help me be the person I want to be.
The other amazing thing about self-compassion is the ripple effect. What struck me most about self-compassion, is that self-compassion is strengthened by understanding interconnectedness. Additionally, compassion for others is improved when being more self-compassionate. In her book, Dr. Kristen Neff says, “as we recognize that we are interconnected rather than distinct entities, understanding and forgiveness can be extended to oneself and others with fewer barriers in between.” To be compassionate to myself at the pharmacy helps me to understand why others may be irritable at the pharmacy. And much like self-compassion, it doesn’t mean letting people off the hook for poor behaviour, but to approach people in a supportive and understanding manner.
Since practicing self-compassion more, I have become more aware of what draws my attention, what I notice, and what I talk about most. Not surprisingly, it is the very things that frustrate me most coming from others that also frustrate me most about myself. Recognizing this doesn’t always make it easy to challenge those beliefs, but practicing compassion for myself first helps me to practice compassion for others and not get so annoyed by other’s behaviours, like impatience or laziness (qualities I find I am particularly hard on myself for).
- What the health and wellness industry sells me is fixing my failures and the illusion of control.
When things don’t make sense and seem too big, what do I reach for? Health and wellness books, exercise routines, diets, sleep programs, meditation plans. Why? Because wellness feels like something I can control in a body and a world that is spiraling.
It is vital to understand personal levers of control in order to act effectively. Yes, an individual’s food choices do affect personal energy levels, mood, and long-term health. And in a broader sense, an individual engagement in civic issues is a level of control that can affect democratic change in a society. And don’t get me wrong, putting effort into taking care of my health and wellbeing has been a net positive in my life. But I struggle to make sense of that. Getting cancer seems a clear sign that despite all my efforts, I am failing at controlling my body. And many health and wellness influencers prey on this sense of failure and vulnerability so they can make money from it.
I’ve known this about the wellness industry for a long time and I’ve had to put in continual effort to filter the messages coming from a $1.5 trillion global industry. Now, with social media, the messages seem relentless, more brutal, and are personalized to prey on my shame and vulnerabilities. This isn’t healthy, and thankfully, I think a lot of people know this trap and don’t fall for it, but it still scares me. I’m still learning and practicing to be compassionate to myself.
“Many people are scared to acknowledge their essential interconnectedness because it means they must admit they don’t have complete control over how they think and act. This makes them feel powerless. However, the illusion of being in control is just that: an illusion and a harmful one at that because it causes self-judgement and self-blame.”
~ Dr. Kristen Neff
- Dying well means living passionately.
Despite living at least two-thirds of my life as though I could die at any time, I hadn’t really considered how I would live if I died slowly. I live mindfully, gratefully, and passionately—not leaving for tomorrow what I can do today. Sure, I make choices and prioritize, because I haven’t figured out time dilation, but I live well. Then I got my cancer diagnosis, and I thought I’d just take time off and heal and then pick up where I left off. This sort of “living without doing” drains me.
Doing activities and working on projects brings meaning to my life; they are essential to my wellbeing. I no longer question why people with cancer or terminal illnesses continue to make art, read books, start projects, garden, support their loved ones, travel, or do whatever helps them live the life they love until they die. In fact, I hope everyone has the chance to die in the midst of doing something they love, because a passionate, unfinished life has to be better than dying without loose ends but never knowing what you lived for. I’m confident now that I can die peacefully with unfinished projects scattered about. I hope I do. I know those projects, passions, and purposes look remarkably different for everyone, but I hope everyone finds some of theirs sooner rather than later.
I struggle to believe that each of us has one unique purpose, and I think sometimes people get wrapped up in and frustrated by finding a single sole/soul “purpose,” but we do each bring something valuable and unique to those around us. In art classes, nobody makes the same piece of art. Nobody. All our bodies and all our lives are different, making our brush strokes and colour choices unique. I bring my unique composition and experiences to all I do, and I think that’s something worth sharing. And even if the smile I share with a passerby isn’t that unique, isn’t one more lovingly shared smile in the world worth living, and dying, for?
“But I do live. The bee flies. There must be some way to integrate death into living, neither ignoring it nor giving in to it.”
~ Audre Lorde, The Cancer Journals
Each lesson above, in some way, goes back to one core idea: the individual is an essential and inseparable part of the larger whole. Just as all the cells and organs in my body—complete with their individual skills and functions—are an essential part of my self, so too are those cells and my body a part of my larger social self and the earth. The edge of my skin is not a distinct barrier separating me from my surroundings and from others. It is more like an ecotone—a place where ecosystems overlap and intermingle.
Everyone brings their own individual composition, passion, and skill to the world. Together we advocate and take care of each other. This disconnection from other bodies and from our own bodies is an illusion that holds us back from caring for ourselves and others. I hope the lessons I am sharing in this post show, in some way, that individual responsibilities and outcomes are entwined with those of all beings around us.
In the end, I want to choose compassion. Compassion for myself, compassion for others, and I want to allow others to have compassion for me. I feel that’s one way to have some control, to shine with love in this bleak, spiraling time. I hope I do my best to honour that compassion by listening, being supportive, and exercising what skills I have. I know you, dear reader, have done that for me.
Now that you’re done reading, don’t forget to celebrate with me by donating to one of these amazing organizations: Young Adult Cancer Canada, Wellspring Alberta, and Tip of the Toes (Sur la Pointe Des Pieds).
References:
Lorde, A. (2020). The cancer journals. Penguin.
Neff, K. (2011). Self-compassion: The proven power of being kind to yourself. Hachette UK.
Kat Dornian 