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!
I love your quote “…I spend every day playing in traffic.” I might have to steal it. There are people who still say “you could get hit by a bus tomorrow”, and I have never thought of adequately kind and pointed response.
I understand that everyone’s lives are complicated and people forget that a person living with MBC probably has more challenging days. I would offer the idea to put an appt in your phone to text/call/write a note to someone you know might be struggling. This small act can make a big difference in that person’s life.
Haha, steal away, Anne! I love your idea about putting an appointment in your phone to check in with someone you know who might be struggling. And even if that person doesn’t get back to you right away, they still really value knowing you’re on their mind. I can be bad about getting back to people when they check in with me (sometimes I’m just feeling too overwhelmed) but I always so appreciate their kind thoughts. I actually want to do a better job of checking in with others myself! Making an actual appointment may really help..
I love your quote “I spend everyday playing in traffic” I would love to borrow that. That’s exactly how it feels. Although I have been surviving/thriving for 22 year, it has not been easy. I have a laundry list of doctors and I am forever being scanned. What I have learned it to really enjoy life and create as many memories with the people I love because I am always waiting for the other shoe to drop.
Borrow away, Beth! I too feel like I am forever being scanned (and now they’re moving them back from every 6 to 3 months. blah). Hopefully this site will give a little glimpse into what life with MBC looks like for readers who don’t live with the illness. We can definitely still really enjoy life but it looks a lot different than it did before..