So this is what happened early 2013 or late 2012, can’t remember exactly. Point is, it was a long time ago, when I was still in my post-treatment, semi-depressed, white-hot angry about cancer culture phase, and was new to cancer social media. I’m admitting here I’ve held onto this negativity.
On a social media platform, a breast cancer patient confessed that she was “competitive” with her cancer (I remember use of that actual word), that if you did not have chemo, radiation, AND mastectomy, your cancer was simply not as serious and you could not understand her position.
I flew very hot at this “confession”. And I say confession because it was written in the form of a confession, with tags like “bad” or “guilty”. I remember knowing a little bit about her situation–I know for sure she was not metastatic at least then; I think she was stage 2 whereas I was stage 3 (I’m not sure), I do know her tumor was not as large as mine. The fact I knew that and remember it shows how horrible I am about the compare/competitive habit too-like everyone else. It gets worse. Here is the childish and churlish response I wanted to send her:
Oh yeah?! Well I was stage 3 at age 38, mammogram didn’t catch my cancer, no mastectomy but my lumpectomy took my nipple so how do you think that looks? Where do I rank in your fucking competition? At least I had a smart oncologist and a smart surgeon diagnosing me, I was wisely advised to do chemo first and shrink my tumor to nearly nothing, so I had the option to have a lumpectomy. Your oncology team must have been really stupid to start with surgery first. My oncologist can certainly beat yours up! As for understanding your situation, well, you cannot understand mine! You have pics of your husband and son on your blog–at least you have those things. I WISH I had a supportive husband. Do you even know how many women who had “less serious” cancers but had spouses leave, or cannot have kids now, and they want them? How dare you think you have some kind of monopoly on cancer hardship!
I cooled down and did not send. But I did unfollow her. I just did not, and still do not, wish to have that kind of shit in my face. Because, see how immature it got? Sure, I am lucky to have had an oncologist who apparently was ahead of the curve with the chemo first route, though I didn’t know that then. It wasn’t until years later, when Joan Lunden called her chemo-first/surgery-after treatment “new” (eye roll), that I realized that I got some smart, forward-thinking treatment even in my podunk small town (see Maybe Mayberry Ain’t So Bad for the whole story on that). I was ridiculous with a “my oncologist can beat up your oncologist,” na-nana-naa-nah response.
Whew, horrible, schoolyard bully-worthy confession out of the way. I’m not proud of this episode, but I am being honest about how quick and easy it is, at least for me, to fall down this hole.
Not long after, Journeying Beyond Breast Cancer posted her wonderful “Is There A Hierarchy Among Cancer Survivors?” an I commented on it. I realized I had judged others whose cancer was a lesser stage than mine (3), and I admitted as much in the comments (read all the way through the comments, it is a great discussion). I confronted in that comment that unsavory judgmental tendency in myself, swearing to myself to be ever vigilant in my attempts to be a better person, despite my curmudgeon-y ways. All these years later I ask myself: have I been successful? I don’t know; I only know I try again, over and over, every day.
And every day is hard. I see the competition all the time. I think it to myself in conversations with others almost immediately. The little voice in my head will say, “Oh, she only had stage 1, I had a harder time,” and I catch myself. Like I pointed out in Part 1, comparison is natural; we wish to seek out those with the most similar diagnosis or age or other aspects–at least in the beginning. For me, those things became less important as time passed. Patients who mirrored my disgust with cancer culture became way more important to me. My first real friend I made in the cancer social media-sphere was a man with stage 4 prostate cancer. Not much in common other than we had some kind of cancer–but we had similar views! I was lucky enough to meet him in person before he died.
It isn’t just the one on one, personal incidents that bug me either. In the everyday ways cancer is spoken of, well, dismissiveness happens. That ongoing debate about Stage 0—is it cancer or isn’t it—and the subsequent debates about over-scanning/diagnosing/treating, has a way of being off-putting, at least to me. And I fully admit to being dismissive of the trauma of a false positive. I’m not sure I’ll ever be able to get over that. I’ve even seen some judging of women who dare to speak out about their stage 0 cancers— reactions like, “oh she didn’t have REAL cancer”. I know in my gut that when the medical professionals and advocates speak about too many mammograms picking up things that may never turn into cancer, they do not mean to diminish the experiences of those patients having a Stage 0 tumor, but…it still comes off that way. Of course, when patients start in with “a mammogram saved my life”, with all that hyperbole, making it into some heroic fight and claiming a victory—yes, at times the scorn is invited (the over-use of “xyz saved my life” is a rant post for another day). It isn’t fair to judge others, but how do I reconcile my feelings when a celeb or public person claims their life was in peril with their stage 0 diagnosis, and here I sit with all this stage 3 mess? Like I said, I struggle every day.
Maybe because I’m over-analytical, I am interpreting other little verbal habits as part of this competitive culture. Things that are not just the obvious, “I have it worse because my tumor is bigger/my stage number or grade is higher”. For example, I always laugh a little these days when I see a “cancer story” in which the cancer patient claims their cancer to be “aggressive.” The word is so overused it has become meaningless. I was told my cancer was aggressive too; I suspect HER2+ cancers are called aggressive in that they grow a bit faster. I’m sure I used that phrase. Why, though? Well, I confess it is easier than explaining HER2 vs estrogen vs triple negative tumors to people who think breast cancer is one simple disease. “It grows faster than usual” is a phrase people understand, rather than “my tumor feeds on protein not estrogen” or whatever. I saw the “my aggressive cancer” phrase used in a NYT article recently, written by a stage 2-turned-metster. I figure she used it to deflect the comments sure to appear: should’ve caught it earlier, it’s her fault, she could’ve done something to prevent the spread, what did she do wrong during her treatment—because we all know those comments will happen (Did You?). I wonder if the patient used it as a defense mechanism; I sure would’ve. Still, that phrase, “I was diagnosed with an aggressive breast cancer” just sounds like nails on a chalkboard to me. No, it isn’t coming right out and saying, “MY cancer was worse than those of other people you know about,” but it sure implies the hell out of it. But that’s just my twisted view.
At this point in this over-long post, one could say, yes we get it, there is competition in CancerLand. Surely now I’ve written too many words trying to prove it, or maybe I’m coming off as finding it when it isn’t there. Bottom line, though—what is there to be done?
Anyone who has read many of my posts over the past 4 years should know, I don’t generally offer solutions, I ask questions. It’s a bit of a cop out—but, I honestly cannot think of any, and my big angle most of the time is just trying to bring up uncomfortable topics in the first place. I mean, this topic makes me VERY uncomfortable—it’s taken me 3 years and a million tries to write this damn post! So, nope, no solutions. And it should also be no surprise I’m not going to be all Kumbaya, we’re all in this together, can’t we all just get along. That AIN’T me.
Fact is, this comparison stuff, these, “my cancer is worse,” proclamations will continue. And yep, I’d agree being metastatic is far worse than early stage—because I embrace the basic philosophy most people do: death is undesirable and to be avoided. There isn’t anything to be done. Now, is there a way to cope with comparison, with someone suggesting I have not suffered enough? Hmmm.
That is not to say there has not been dismissiveness in the metastatic conversation. That open letter to NBCC from Metavivor earlier this year was particularly trying for me. So very dismissive of early stagers and I applauded theitsthebunk’s response to it pointing out the letter’s author was unaware of the circumstances of individual early stagers to make such dismissive blanket assumptions.
That brings me to my next point.
This is going to sound cliché, but maybe the first place to start is by realizing cancer doesn’t happen in a vacuum. I think I should repeat that for those in the back row: CANCER DOES NOT HAPPEN IN A VACUUM.
Yes, the trite platitude on a pretty picture stating something to effect that everyone we meet or interact with is going through a hardship we don’t even realize, it’s true and so often ignored. As I mentioned in my fantasy retort, I’ve seen too many women in social media speak of partners who left them or were unsupportive during cancer. And even though the fertility issue is not one I personally care about, I am too painfully aware of how large it looms for my friends.
The biggest issue for me is economics. Sure I’m not metastatic, but I’d be pretty doomed if that changed. I am not in a financial position to try the latest and greatest treatment to extend my life a few months. Sometimes I laugh grimly and wonder if financial status is “worse” in breast cancer (whoops there go the cancer comparisons again!) than other cancers. Breast cancer organizations have an “ideal” patient even though I’m sure corporations and “charity/awareness” organizations would deny that. Sure, they want the feather-boa, pink-outfit clad warrior woman who has survived (no bummer metsters to bring everyone down now). And she must have the disposable income to waste on pink totchkes. It has often been pointed out that breast cancer is a shopping disease, that this is sort of demeaning to women because the strategy relies on the women-as-shoppers stereotype. But it is worse than demeaning. It relies on a certain kind of woman caring about breast cancer: yeah, one who can afford it. That leaves me SOL–even if I wanted to buy that crap. I remember everyone getting up in arms about the Komen-Kohl’s idiot “elephant” campaign a few years ago. Urges to boycott were all over social media and all I could think was–how nice to take such a simple step. Others may call that kind of “activism” lazy, to just NOT shop, but hey, I’ve always pointed out that idiots will stop churning out dumb pink products once it stops being profitable. But I do that slacktivism every day and while yes, I firmly believe in not buying pink-drenched crap, I also cannot waste the money anyway.
Point is, we all have some baggage we brought to cancer. Basing the cancer competition on mere stages and grades just seems, well, limited vision. Of course, even with the baggage, I’m sure there will be those that bring those factors into the “I had it worse” syndrome. Still, I think for everyone to stop assuming we know ALL the details of others’ cancer experiences is a good place to start. Am I saying check your privilege? Maybe. I try to check mine—again, I’m sure I fail more than I succeed, just like I do with comparison.
My final though on this topic is this: should I even bring this up, since it likely cannot be resolved? I know I should not still be so mad over the incident I’ve used in this piece, given it was posted sort of like a “confession” even though it was not on an anonymous site like Whispers or Cancer Confessions. The original poster was being honest, and I’ve prized being honest about cancer experiences above most anything. So who am I to fuss when the honesty makes me angry or uncomfortable? After all, I’m being honest admitting here I’ve thought the same. Is it fair that I got so upset about a confession style post? My cancer was “worse”, but how lame am I to note that?
I wonder at my sense of propriety and etiquette, drilled into me by southern-esque maternal figures. That Southern way we say something polite but it means something else (actually read an article about translating Southern mama language today). So is the issue that I’m fine with her feeling the way she does but how DARE she say it? I mean, the punk part of me thinks flouting manners and saying what you really mean is a good thing! Sometimes I hated the “(w)e’d rather be vague than rude,” rule of thumb while growing up. Say what you mean—that is always good, right?! (NOT making a comment on current American presidential race, not going down that rabbit hole.) Is it wrong to admit to comparing because it does hurt some feelings? Or am I just whining about my widdle huwt feewings and need to suck it up?
So, what’s the answer here? So many of us here in CancerLand are determined to “speak the truth” about breast cancer, and that many of us do the automatic ranking (my stage was worse than hers, I had it worse), it’s just a fact. It won’t do any good to pretend it doesn’t happen. Am I suggesting we submerge our feelings, keep our mouths shut? No, of course not. As we are all free to do cancer as we wish, if anyone wants to claim their cancer is worse than mine—in their opinion that is—they are free to do so. But I’m free to react as well. I’m free to roll my eyes about it. I’m free to point out how dismissive and judgmental such claims are, and to think less of anyone making them. That is one price of making that claim, of course: loss of respect from others. Just as I unfollowed the person who made that post years ago, I’ve continued to withdraw from this kind of nonsense in recent months. I am first to admit, yeah, I did not have some of the same hardships as others in terms of say, side effects. I discount too. But if someone tells me I have not had it hard enough, I might just say “fuck you” and walk away. I’ve finally reached the point in social media I’m not interested in proving myself and pissing contests. So much for manners.
I’ve written 3 very long posts bringing up questions, not supplying answers, reaching no conclusions. Hey if anyone has a suggestion for resolution, I’m all ears. I end this series with a whimper, not a bang. Truth be told, I’m tired, this painful issue in CancerLand wears me out. I had a headache when I finished Part 2 last week and have another now as I finish this one. I’m wiped out. I sense I’m not really finished with this topic, but hope I don’t wade into again anytime soon—I just don’t want to talk about it anymore. I hope I see less one downmanship in CancerLand—and not just because I tend to prune my social media feeds to avoid it. Advocates for other cancers/diseases will continue to exploit cancer, especially breast cancer, to further their agendas. Patients will continue to compare staging. All I can hope for is everyone to at least be cognizant of how divisive this competition is and to expect fallout.