A Strange Evolution

Sigh I am so tired of the endless Dumb Shit Said To Cancer Patients (DSSTCP) articles–yet here I am writing on the topic myself. Again.

My views and feelings on many topics in CancerLand have evolved slowly over the years since I began this blog. Most changes have been subtle I think, so subtle that maybe only I know the tiny differences. But I think my evolution on the topic of DSSTCP is noticeable.

When I first began interacting a bit on the interwebs with other breast cancer patients, I thought it was great that so many were writing “don’t say that, say this” types of books and pieces. I especially enjoyed the blog posts listing snappy comebacks some cancer patients thought up. You know, stuff like, if someone advised a patient to view cancer as a gift, patients would say “I want to return it/get a refund”, things of that ilk. I even went so far as to develop a list of DSSTCP with potential snappy comebacks, hoping to build a resource of those as a page on this blog. But I think I met some patients who were writing a book similar to that, so I abandoned it (like so many posts I start).

Lately, there seems to be a glut of what not to say, say this instead type of posts on my FB feed. Now, while some of the DSSTCP still greatly piss me off, I am at a point where I don’t really feel like reacting much if I hear any. I’m just not at the white hot angry stage I was when I first completed treatment. I’m no longer stuck in outrage mode. But for some dumb reason, I still clicked on some of these recent posts.

And I think I’ve had an epiphany of sorts.

For a while now, I’ve been increasingly annoyed that we (cancer patients) are asked to provide pointers on what to say. While it is somewhat good that people are recognizing that the usual phrases are unacceptable, the cry of “tell me what to say” proves what we know about communication: people listen to respond or retort, not to actually hear or understand. There is a self-centered-ness to this request for appropriate responses that irks me.  See my old, old, old post about this, Don’t Speak. In short, maybe listen instead!

But now I’m going half a step further. I don’t even want the suggestions of what to say to even exist anymore–and I hope I can continue to resist the urge to ever offer any suggestions when asked! Is this because there are sooooo many of these books and essays already existence? YES! Is it because I am tired of people not learning to listen, have empathy and think for themselves? YES! And one more reason. Yep, it has to do with being a Curmudgeon I guess.

In each of the articles on this topic I skimmed recently, there was at least one suggestion in each piece that rubbed me just wrong! If anyone said one of these things to me, well, it would be nearly as annoying as the original DSSTCP. The best example I can remember right now was one article suggesting people offer to shave their heads in solidarity, and to be prepared to go through with that if the offer was accepted. Look, I HATE the head shaving in solidarity thing and do NOT think that is an appropriate “say this not that” kind of thing. (See Supporting the Show and Something I Can Use for my thoughts on the head shaving issue.)

The bottom line is, as always, cancer patients are all individuals, and no one will have the same feelings about every single aspect of the cultural experience of cancer. Again, while it is good there is a general recognition that platitudes are maybe NOT the way to go when chatting up MOST cancer patients (hey, some LIKE the platitudes, so there’s that)–making a generic list of “say this not that” is bound to not work every time either. Because of my Curmudgeonly nature, of course I’m bound to be annoyed by at least a few of the alternatives offered. And then, inexplicably, there are the few things that do not annoy me, like “new normal”, and I know some folks hate that one.

When asked recently for some “what to say” suggestions, I balked. My internal monologue said, “who the hell am I to suggest anything–I don’t know every damn cancer patient and what is suitable for one is NOT for another”. I have a rather black sense of humor, so I’m sure I find some things funny that would horrify other cancer patients. Or maybe I just don’t want the responsibility of providing “cancer patient approved” pat phrases, because I know at least one thing is bound to rub someone the wrong way–just like the head shaving suggestion made me gag.

Look, I’m not trying to hit out at the many patient bloggers who have written these suggestions. And I’m not trying to be the opposite of helpful on purpose, hell-bent on NOT improving the lines of  communication between current cancer patients and potential future patients (duh, that would be everyone, since every human has the potential for cell division gone amok).

I guess in my mind, I just go back to my suggestion of a couple years ago: it is not your turn to talk, it is the patient’s turn. And I stand by my latest cancer motto: try thinking what your friend who happens to have cancer may want to hear–not what “cancer patients” want to hear. If you cannot understand the subtle difference in that statement, then maybe you shouldn’t be talking at all. You see, the problem ain’t what you’re saying, it’s how you’re thinking.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

7 thoughts on “A Strange Evolution”

  1. Amen! Show up (doesn’t even have to be in the physical sense) and listen. I’ve said it before and I’ll say it again, silence is so under-rated.

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    1. Yes, like, “just be quiet a minute!” Ha ha, maybe that should be the “pat response” when someone asks for a list of things to say instead of platitudes: “nothing!” But I guess the articles wouldn’t be very long!

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  2. Interesting reflections you shared here. I like the idea of treating patients as individuals when it comes to supporting them. I agree that forcing people to say “the right things” to patients is also forcing them not to think for themselves. It isn’t a natural response. And like you said, not everyone would react the same way.

    I too have read some “what to say/what not to say” articles from patients that I wasn’t particularly in agreement with. Personally, I choose silence. The society we live in today is programmed in such a way that everyone feels they have to have an opinion. So once again, this is a cultural thing we have both in cancerland and our regular society. But there’s something else I struggle with: How many different kinds of expectations should there be? I sometimes wonder, just as much as there are societal expectations for patients, could it also be possible that we may be expecting too much from those who haven’t walked the cancer path?

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    1. Yes, I admit, I am expecting too much. Because of the reason you point out mostly–this habit of listening to respond/retort rather than to understand. So in a way this post is not really about all the say this not that lists that are focused on cancer–but all illness and death too (one of my old posts I link to here was inspired by a woman’s essay about cruel things said to her after the death of her child). My gripe is with society as a whole, and maybe I’m just filtering it thru the cancer lens, because that is what I happen to know a bit more about.
      I know I am expecting too much, and am merely letting off steam half the time on here. My blog is not widely read, I am anti-social, so I’ve adjusted my expectations accordingly. But in general I don’t think most people will read an article about cancer culture, or other illness, or death of a child) unless they have a close experience with such things. Stuff like the empathy cards, and the little one minute news blurbs about them, have far more reach. I’ll explain an anecdote about that in a future post. In fact, I’ll make it my next post I think–you got me thinking!
      Thanks dearie!

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