Boundaries
Family around me kept trying to point me toward hope, a chance, but I was unwilling to hear it. I didn’t have the ability to conceptualize a future anymore. I knew everything I had been working towards, everything that had given me a sense of purpose, was gone. I couldn’t see past the fog of grief that laid out in front of me. It felt like there was nothing for me anymore.
A lot of what people don’t understand about the journey is what terminal actually means. People just sit in their own point of view where they still avoid looking the reality that everyone dies in the eye. They sit with feelings as if there is always a clean ending, like we are all given the opportunity and the privilege of growing old. The truth is that it is a privilege to have more years in front of you than behind you. To see the future - grandkids, generations, everything around us growing up and older - that’s a future so many won’t have. Time takes us when it wants us. Some go old, some young. Some tragically, some gently in their sleep.
People are so focused on maintaining their idea of permanence that they often take for granted the days they have. There is so little time and there are so many things to do in life. Someday may never come and people put off everything until the inevitable occurs and life has passed them by. It isn’t until someone is impacted by grief that they often stop to ponder the things we want from life. Until something like death and/or the prospect of it rocks us to our core. A central experience of being human is to experience death. It is one of the only certainties of life, and yet, when confronted with it, we avoid talking about the eventuality of it all.
The discomfort of talking about my terminal status plagues most people I speak to. They offer me pleasantries and platitudes. “You are so strong… you are gonna make it through this… it’s gonna be okay….” while life will return to the status quo for so many after sharing these conversations with people, I’m left feeling more alone than ever after being offered up these clean, affirming phrases that do nothing to help me. I’d rather be affirmed in how loved I am, how that this situation is actually the shittiest thing to go through. Being offered validation is the most helpful part for me. It makes me feel normal. It makes me feel seen, heard. It’s not as tidy as the phrases that you would typically offer to avoid the grittier parts of a conversation, but it is certainly more affirming.
People want to be helpful and offer up some sense of hope. I’ve had family try to send articles, books, etc to help me navigate my cancer diagnosis. I threw them all away. I decided early on the only acceptable source of information are the care team that I have hired to be honest with me about my diagnosis. I denied help from alternative sources because there are so many different types of cancer that there is no exact solve for them all. They vary heavily. I decided the course of action was the medical route and I have stuck with it because I still believe it is right for me.
I think most people get torn between what they want and what others want you to do, but the most helpful people in the process of me seeking out my treatment are the people that let YOU lead. At the end of the day, it is your body and your choice to make the decision best for you in your treatment. I had two options for treatment at the beginning of my journey. I could either go the suggested doctor route (and the route that had a lot of research behind it) or go the route of a clinical trial. I chose to go the results route, the one with the best research cases, as the results pointed toward the goals I had for treatment: quantity and quality of life. Choosing the goal of treatment for yourself is such an important step and having that be my guiding force helped make decisions about my care easier to make. I set boundaries about how much information that I wanted to know and the sources I would accept it from. I set the boundaries to protect myself and I didn’t just set those boundaries with myself. I set them with my doctors, my family, and my friends.
The importance of boundaries allows you to be in control, especially until you’re ready to hear more about your diagnosis, treatment options, etc. You, and only you, know what feels right for your journey and your health, so follow your instincts.