When you hear the media speak about "protecting the vulnerable" it applies to me. I was asked to speak at the Desmoid Tumour Foundation of Canada's annual event, but due to COVID-19, we've had to cancel it. This event is organized by a small, local charity that is operated by volunteers. In three short years, it has raised over $200,000 towards tumour research initiatives. I'm directly impacted by this charity, and was really looking forward to speaking about my experiences and connecting with the community. But, here we are. I hope these words will help raise some awareness, draw connections to this current crisis and serve as a reminder that we really are in this together. I'm thinking of all my friends who are undergoing chemo, and everyone who has found themself living in a marginalized group. We are all in this together.
chemo versus covid
It’s hard to process all that’s happening in our world, but something feels oddly familiar to me.
New data emerges each day, opinions vary, research and trials continue, government decisions are debated, every country has their own approach, hospitals are overwhelmed, panic leads to desperation, and everyone is feeling anxious about the uncertainty.
This moment feels a lot like receiving my diagnosis and learning that I would need to undergo radiation and chemo for an unknown period of time. And here’s the thing: you’re not given a choice to decide when your life will be turned upside down. A potentially lethal virus, like a tumour, spreads without your consent.
Unexpectedly, every single aspect of my life was disrupted because of a health crisis. My job, home, personal life, finances and future plans suddenly changed in ways I could’ve never imagined and it's taken me a long time to process my diagnosis. I feel vulnerable. I still wonder about all my plans - all the things I think I want for myself. And eight years later, while I continue to wait for a cure, the fear feels heavier in this current crisis.
So here we are, collectively wondering the same questions in a different context. When will things go back to normal?
And what if, like me, nothing ever really feels normal again?
What if Covid, like cancer, is a chapter in our books that we don't want to re-read. What if the clinical trials don’t work? What if we go into "remission" and it returns? These are questions I ask myself daily.
I’m part of the vulnerable group. I’m one of those people they talk about in the news who could get very sick if I catch this virus. And like you, I still have a lot of things that I want to do with my precious life. I need to make more art, and learn to bake sour dough, return to my classroom, visit Tofino with my loved ones, build a family of my own and watch the delicate blossoms on my citrus tree slowly turn into perfect lemons.
You’re not stuck at home. You’re safe at home. How lucky are we (at least in these parts of the world) to live in safe, warm homes with clean, running water, power and reliable wifi. That’s not a punishment, that’s a privilege. So while this weird time really sucks, we'll get through it.
Please stay home and be grateful that healthcare workers and essential service workers are out there doing their important work, so that less lives are lost and we have the services we need.
In the world of cancer care, there are a lot of unknowns. It’s hard to be patient and blindly trust the opinions of others. But this isn’t a subjective debate. Unlike cancer, COVID-19 can be contained and controlled by us. Or maybe our world will be better once this challenge is behind us.
I’ve been conditioning myself for years, now distanced from the previous parts of my life - life before chemo. I have a mantra that I repeat everyday: when things don’t go according to plan, just make new plans. Take what has been offered to you, and in spite of the uncertainty, turn it into something that you’re proud of.
Going through cancer treatments, or any kind of treatment for something that is truly out of your control, is awful. Fortunately, we have some control in this situation and all it requires is a little mindfulness and patience. So, please stay home and consider the people in your community who are vulnerable and need your help. You never know what help you might need in your own future.
This journal was submitted by someone very close to me, who requested that her name remain anonymous. Im so happy to share these inspiring words of hope by a loving mom whose son was diagnosed with leukaemia in 2016. Three months after he turned two years old. He’s now five, started senior kindergarten last year and completed his last dose of chemo on February 5th. Children are resilient. Unaware of the politics and challenges of healthcare, they innocently adapt. I think this family is amazing for persevering through a challenge like this while holding onto each other tightly and never losing hope.
January 2, 2020
I went to bed last night feeling nothing. Nothing was different. It was just another appointment. Sure, one month closer to the end, but when you’ve been at it for 3+ years, and it has amounted to 2/3 of your parenting experience, you accept everything as part of life. Part of your routine. For better or worse, I had come to accept that this was just the way things were. Our reality. Our life. While my mind knew that we were nearing the end, I couldn’t fully accept it. It didn’t seem possible that this would be over soon.
When I was handed the appointment card and our NP explained what our end date was I didn’t believe it. I thought I was missing something. 5 more weeks and there would be no more chemo for his tiny body. What was the catch? Who’s going to hand me the “But...”? No one. That’s it. It will end. And the timeline is tangible. The relief and tears I let out were a small fraction of the emotion I was feeling. He didn’t understand why Mummy was crying. A moment ago wasn’t everyone just getting excited and talking about high fives? I told him I was happy. They were tears because I was excited and so relieved. He still didn’t quite get it. And all he wanted to do was hug me and comfort me. He stood up and sat back down. Not until his nurse told him it was ok to give Mummy a hug, and I opened up my arms, did he come to me - still very unsure. He stroked my arm and said “it’s ok Mummy”. I told him I was so proud of him. So proud of how strong he is.
A day - actually a year - that started out hopeless had turned around with one piece of paper. And I suddenly had the energy to make it to the finish line with my little man on my shoulders. There is an end. There is something more after this.
No, not today. Today the fears and the doubts and worries about “after treatment” can fuck right off. Today I will recharge and celebrate this tiny, infinitely strong human. I will feed off the knowledge that we have been through hell and made it this far. We WILL get to the end. We will do it together. The way we started this journey.
The Buts can knock at the door tomorrow.