January 11, 2016
One of the reasons I started the blog series “Cancer and Me” was so that I could own my story. I wanted to be in control of what information I put out there, in my own way, first. The thing about being a part of different communities, is that I knew news about my cancer would be told within different family and friend circles. Inevitably, there is the situation of broken telephone, where I tell one person something, but that information gets distorted as it is passed on to someone else and so on. I also did not want to contribute to the stigma that the disease still has in different parts of the world, including Canada.
I am fortunate that I am not famous, because then my cancer runs the risk of becoming a news story and there is rarely much control over how the media frames some of these things. Today came the announcement of David Bowie’s death due to cancer. It was a private battle, and thinking about it for a moment, it makes complete sense that he did so. He did so much in his life and just because cancer ended it, it shouldn’t be given the headlines.
Cancer is horrible. I wish it didn’t exist and I often wish the word wasn’t something of a trigger but it does make me simultaneously sad and angry regardless of the context in which I hear or read the word. Personally, I know that I am much more than my cancer, but it often feels like it takes over my life when it manifests in physical symptoms. Not even the cancer itself but because of the treatment to get rid of the aggressive type I have.
I think as human beings, we have a hard time keeping information to ourselves, partially because a key way of processing information is to talk about it. I am aware that I myself have needed to process, and reflecting back, this blog has provided me with the space to do so. It provides a platform for those close to me to refer to if they do not know how I am doing. Granted, sometimes it may be hard to read, but it is the truth, and the truth can be tough.
I haven’t put pressure on myself to keep writing this blog series. I write when I want to, and when I do not feel up to it, I don’t bother. That means that recently, my blogs have been a lot more sporadic as I have been doing other things in life, like going back to working full time, trying to be more active, meditating, journaling, painting, reading and of course, colouring.
Whether people choose to disclose their cancer diagnosis to just a few people, no one, or more publicly is a personal choice and there is no wrong or right. What is more important is to remember that they own their story, they have the option to choose how they go about their treatment and their recovery. I give permission for people to share my blog posts because I have control over the content and how it is written. If I talk to someone individually about a particular occurrence or confide in them about something, it does not provide automatic permission for them to share that information. In this digital age, it can be difficult to respect and honour the difference, which is why I tell people, if necessary, that “this is between us” or “please don’t share this”. This statement is not meant to offend, it is meant to clarify.
We talk about this concept of disclosure often in spaces where I meet other people living with cancer. It can be tricky to navigate but I feel comfortable with what I choose to share here and what I share more privately. It has a been a challenging but rewarding process for someone like me, who has throughout much of my life been told that I’m such a private person. The biggest reward and primary reason why I feel happy with my decision is that sharing this blog series allowed others to connect with me about similar experiences, ask questions and voice fears. A great way to validate yourself if you’re into that sort of thing.
I am fortunate that I am able to use my voice to share some personal stories and insight into navigating the health care system in Toronto, advocating for yourself against institutional policies that make no sense and practicing self-care. My education (formal and informal) really has given me the lens to analyze a lot of what I’m going through from a health equity perspective. I am immensely privileged in a lot of ways and continuing to make that the focus of my life helps me stay away from the self-pity. If I died tomorrow, I’d be happy with my life and how many people can say that at my age. So yes, I am definitely owning my story.