Oh I’m Sorry, Is MY Life-Threatening Cancer Making YOU Uncomfortable?

There have a been a few times comments on my posts have made me think and made me want to expand on the idea into another post. I try to respond to all comments as best I can, and the discussions can be quite good. But I think maybe some folks don’t read the comments sections on blogs, which is a shame; I’ve found some of the best ideas, thoughts, and conversations in comments not only  on my blog but others. So sometimes it is a good idea to write a brand new post. I just haven’t done it before because of time constraints or I was on to some other topic, or I was just being lazy.

Swoosieque just made a comment on my previous post that made me think of an idea that is a small part of one of my motivations for blogging. This one motivation—among a few others very important to me—is to challenge the status quo of cancer culture and conversations. (Pssst, for those new to my blog, I don’t like Pink and all that rah-rah that goes with it, and I’m alone and surrounded by it in my rural area, so online, this blog, is a great way to rebel when smacking my head against the wall in dealing with people in real life gets to be too much.)

The previous post addresses one of the dumbass things people say to cancer patients. As I mentioned in that post, I’m not really interested in that topic anymore; I guess it just doesn’t bother me as much because there are so many other irritating aspects of cancer culture. But Swoosieque’s comment made me realize that maybe the dumbass things people say is a small part of the bigger picture, so I’ll address that big picture using the example of these dumbass things.

Swoosieque talked about (seriously, click over there and read our discussion) how she too was uncomfortable and did not know what to say to a person with cancer 27 years ago. Her larger point is about how, until she got cancer her own self, she just did not know what to say to cancer patients. I KNOW I’ve said dumb, maybe offensive, things to cancer patients my own self too, before I got cancer, and I wrote about it.

But that’s not really what I want to talk about. She pointed out that back then, cancer was not spoken of. That got me thinking. She is right, one of the points I hear in cancer conversations is that the taboos around cancer, especially regarding breast cancer, are now broken. We have indeed, as a society, come a long way.

But we have not come far enough.

I truly dislike it when anyone uses the argument or example of how “breast cancer used to never be spoken of, and look at it now”. Folks will point to all the damn Pink as evidence of how far we’ve come. While I dislike Brinker (and Komen and Pink), I agree with the sentiment behind a statement she once made, something along the lines of until breast cancer is eradicated, there is not enough Pink.

Well, I’ve had enough Pink thanks very much, (and I capitalize Pink to include the ribbons and all the party culture and whatnot it represents which I so dislike), but she is right—the conversation and research cannot stop just because we’ve come this far. Just because everyone is so “aware” of breast cancer (don’t even get me started on that topic today), what, we’re all done, problem solved? Excuse me, I still got breast cancer and am likely to get it again—problem NOT solved. While it may be impossible to cure cancer, at least any time soon, that does NOT mean attempts to do so, or at least to prolong life, improve effectiveness of treatment, make treatment less miserable, and so on, should just cease because, hey, look how far we’ve come!

I am of the same opinion regarding the dumbass things people say to cancer patients and the dumbass things they want to hear from cancer patients. Sure, cancer, breast cancer especially, is an acceptable topic even in TV shows now and maybe it wasn’t 20 years ago—but c’mon—that was 20 years ago! Society still cannot seem to get past a few tired old clichés. And I don’t know about others, but I heard the same cliché repeatedly over my treatment timeline, from people I barely knew AND from family members, multiple times from the same people, which kind of made me think everyone was being insincere. But I am sure they were being sincere. What I think is more likely is that while cancer is no longer taboo, it does not mean everyone is all that comfortable with it either. If they were, maybe we could get real and honest, and there would be no need for blogs, essays, and books about all the dumbass things people say. Because real conversations would be taking place, not trite phrases gently spoken to cancer patients so often that we can actually make a list of them (no I don’t have a list, I lost interest, do an internet search for the aforementioned blogs, essays, and books).

I remember once reading in a comments section (see what I mean that the best stuff is in comments?) of an essay that us cancer patients should not be so harsh towards our friends and others, because they too are new at dealing with it. I’ve addressed this before. And I get it, like I said above, I was one of those idiots who did not know what to say and got a harsh lesson by getting cancer my own self. This is one reason I’m driven to talk and write about it. The only way to get past this uncomfortableness is to start a conversation about it. The essay in question addressed how long cancer treatment takes (months!), and how friends and others tend to fall away because they, especially younger people, do not understand or have no experience with serious, long-lasting illnesses such as cancer. The essay introduced the topic, maybe the writer hoped to have a conversation that resulted in change, but that didn’t happen.  Instead of listening, some commenters got defensive. Yes, like I said, I was such an idiot once, so I will try not to be too harsh when I say that I can only understand the “I don’t know what to say” predicament so far. Yes it is hard to know what to say, how to act, but cancer is harder. I want to scream at the commenter, “Oh I’m sorry, is MY life-threatening cancer making YOU uncomfortable?” How can we ever get over this discomfort unless it is confronted?

I’m tired of the “well at least we’re talking about it” and the “treatments are much better now than they were” excuses. I’ve said many times and I will say it a million times more, I AM grateful for all the funding and awareness and so forth that kept me from dying because I was lucky enough to get cancer now, not 30 years ago. But my cancer experience was hardly cushy, and just because we’ve come this far, we should NOT stop. I want more and better (see my About page).

moar-cat

Remember how awesome TV dinners were—pop them in the oven for 45 minutes, go do something else while it cooks and presto! Dinner is served with little effort. Then along came microwaves. I bet women thought those hand operated washboard things were waaaay better than washing clothes in the river, and now we’ve got washing MACHINES. Whoa! Yes, I’m being absurd, but to make a point. There is always a better way and being satisfied with the status quo just leaves everyone in a rut. I want out of the rut.

Science IS still working on “better” for cancer care, why does society and culture lag behind? Sure, sure progress in culture may be objectionable to some. Thirty years ago Madonna was lewd at the VMAs and now we got Miley making Madonna look tame. Some would say that kind of cultural progression is not so good. I don’t care about that. I do care about bringing some honesty into the societal conversations around cancer, breaking out of the mold of overused clichés, only spewing positive, “inspirational” crap, and the idea that Pink is effective. I will continue to push to get real.

So dear Swoosieque, I thank you for making me think—I bet this did NOT go where you thought it would! Does not have much to do with what we were talking about, I guess, but good all the same. You inspired me to think differently about and address something that bothered me that until you came along, I just couldn’t put my finger on it. I think I said somewhere in our chat I’d write a short post. HA! Like I could ever do that. I remain, as ever, yours truly, the very long-winded, Cancer Curmudgeon.

My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone.  She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist.  Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.