When I express my fears of mortality, I sometimes hear the argument “we could all get hit by a bus tomorrow.” It is well-intended, and I don’t take offense. But I don’t look at things quite the same way. True, anyone could get hit by a bus tomorrow, but I spend every day playing in traffic. “When will my cancer show progression again? Will they be able to get it back under control?”
Don’t get me wrong: I have days of incredible normalcy, a strong sense of purpose, and even moments of profound joy. Actually, my joy is sometimes even heightened by our illness. Every time I’m able to pick up my nephew and swing him in the air or complete a difficult workout, I smile to myself and experience a moment of immense gratitude; I wasn’t able to do that four years ago, or this spring when I had a recurrence in my spine. And I don’t know what tomorrow will bring. But I was able to do that today, and for this I am grateful.
On the other hand, though, I’ve had to get used to a life of scans and tumor markers and daily medication and monthly appointments. At this point, I’ve actually spent a quarter of my life dealing with this disease. Sometimes I’m just exhausted. And scared.
I think it’s difficult for people to wrap their heads around what it means to live with incurable, Stage IV cancer as a serious chronic condition. Many individuals still look at Stage IV cancer as something you fight and beat or die from in a pretty short time frame. They don’t see it as something you simply live with every day. However, as cancer treatments improve, but there isn’t yet a cure, people will need to get more used to the idea of individuals living with cancer as a serious chronic condition…and understand what that looks like. I’m hoping this site can provide a little window into that experience.
So here’s my question to all you brave and beautiful members of the MBC community–what do you want people to know about our illness? What is helpful when you are trying to educate and inform?
Sound off in the comments below. Thanks in advance for helpful & kind feedback that will lead to greater understanding!