In the way that our blogosphere seems to build from one post to another, Marie at Journeying Beyond Breast Cancer recently shared thoughts about the language of “survivorship,” and leads right into some thinking I’ve been doing this week.
All this talk about language, and I’m a bit stuck on the issue of “war” verbiage. I sense there are those who are “fighters” and those who are “living with” cancer. I respect both deeply, and hope for a time when they can respect one another!
I have been vocal (can we be vocal in writing?) in my frustration with the “war rejectionists,” if you will. If fighting a battle against cancer doesn’t work for them, then without question they should find language that is more fitting or comfortable. But they need to leave others to use the language that fits. I wonder, too, whether war language is easier to critique when treatments are behind you, and perhaps something that is particularly beneficial for those of us in treatment. As I read the comments on Marie’s earlier mentioned blog, it was not lost on me that most of the feedback was from women who were NED, their cancer treatments behind them. To continue my own analogy, they are no longer in the trenches. Like great generals, they can step back, be objective, wonder what the war was all about and how to move forward.
So, as someone who is back in treatment with no end in sight, I find the “living with cancer” language a tough pill to swallow. Breast cancer cells have taken up in my bone marrow. They have begun to erode my pelvic bone. They are in perfect position to spread to other vital organs. 75% of women in my condition are dead in 5 years. I do not, under any circumstances care to “LIVE with my cancer.” I want it DEAD. Completely. Annihilated. Gone. It is most unwelcome and I am not interested in living with it, being kind to it, or making peace with it. I don’t want these cells to settle in and feel comfortable.
So, I’m not prepared to see myself as “someone living with cancer.” I would much prefer to be killing it. Doing so, for me, is active and empowering. Killing cancer cells is what my body needs to do to save my life.
regrounding 
Jun 04, 2012 @ 18:20:48
Hi Lori ~ arriving at paragraph 4 really stopped me. and turned my thought process in a different direction, altho which direction is hard to say because I was stopped by an emotional response rather than an intellectual one, so I send you a hug and love. May I tender here an offer of a shift in perspective? Toss away both “living with cancer” because who the hell wants to live with cancer? And “war on cancer” because even though it feels like a war to you, invaded by something creepy & you didn’t ask for and don’t want, the word war creates imagery defining stress, anxiety, fear~none of which you want or need to make your body well. Healing will serve you well in any form you imagine. If I have offered something or anything you don’t want, please toss this away too. With Love, Joy Regan, (a twiiter follower @womenwalking )
Jun 04, 2012 @ 18:31:43
Thanks for your beautiful response! To be honest, how I approach this evolves along with me. I’m not really in constant “fighting mode” and focus mostly on the positive things I can do to support my healing…meditation, exercise, diet, as well as how things contribute to whatever time I have left. I focus mostly on whether “this” (however I am at any given moment) is really how I want to be.
I’m so glad you joined the dialogue!
Jun 04, 2012 @ 20:56:47
You are so right. I “live with” my wacky deteriorating spine (& other joints) but my medical challenges (politically correct term for “chronic pain few undersand”) doesn’t put my life in jeopardy. I can no longer work, but my life span isn’t a factor in my treatments, meds, scans, etc. What I have is an example of what people “live with”. With breast cancer and mets you must be a fighter. After over 35 yr of friendship I’m not ready to say goodbye. If anyone can fight cancer and stand up to it, it’s certainly you!
Karin
Jun 04, 2012 @ 21:08:18
Oh Karin….tearing up. I’m not ready to say good bye either, and I have no plans to do so! But hang on, it may be quite a ride!
Jun 05, 2012 @ 02:09:46
I love your writing Lori and I agree that we need to respect each other’s right to choose the language most appropriate to how we feel. I am not a natural born fighter, so that terminology never resonated with me, but I fully accept that for others it is just right. Thanks for sharing your perspective – wonderful as always.
Jun 05, 2012 @ 11:18:02
Thank you Marie. The more I think about this, your comment and Dr. Attai’s both make me wonder if this also has to do with where we each stand on the treatment continuum. I think I was much better at “living with it” when “it” was quarterly blood tests and semi-annual scans. Now that I am back in treatment the idea of “living with it” is intolerable. While it may not always feel like a battle, some active language is required.
Jun 10, 2012 @ 01:27:31
I agree with these points from both of you (and Dr. Attai)
Jun 05, 2012 @ 06:00:42
Not only do we need to respect everyone’s right to choose the language most appropriate to them as Marie stated, but I think that all of us need to understand that our own individual language changes from day to day, sometimes minute by minute. I would resist the temptation to define oneself (pr others) by a single phrase or word. With or without disease our emotions and moods change regularly, and how we see or define ourselves often changes as well. I just hate to see someone labeled when that word or phrase is just a part of the whole. And it’s the whole person that matters.
Jun 09, 2012 @ 23:32:13
Rarely do I read blogs that ‘speak to me.’ In the past I’ve been referred to blogs that often seem to detail people’s experiences; although I respect them and their journey with breast cancer, I do not find it helpful to get caught up in their struggle and wonder (for example) if I will live to see my 14 month old boys graduate kindergarten. I think that it’s just not helpful to me to dwell or as you wrote, to read about someone else who is “living with cancer.”
Well this post and others that you’ve written which I’ve had the opportunity to read, they’re different. You write about your experiences but mostly from what I’ve read, you write about your thoughts. Maybe it’s because I can relate to what you’re saying? What ever it is, I felt energized by this post. I will not say inspired because frankly sometimes it upsets me when people tell me I inspire them (as if battling MBC was by choice and a play toward heroism); however I will say, I know now after reading your post that I want to “fight” because I too want it dead and that “living with cancer” just really isn’t an option I’m content to settle for. Thanks for articulating that.
I want to hear more about what you have to say. I’ll be back! Thank you for sharing.