I got an email last evening from a woman who said she was from one of the more venerable online news sources, one that used to be in print. She said she was a senior editor who was “working on a piece about what you shouldn’t say to a breast cancer patient, and I was hoping you could lend your insight. If you’re open to it, could you send me your thoughts on what people shouldn’t say (and why), and some examples of what they could say that would be much better? Any anecdotes or advice would be terrific, and I would love to include your thoughts.” It immediately occurred to me that one of the things you shouldn’t say to a breast cancer patient was that you’d like her to tell you what you shouldn’t say to a breast cancer patient. I emailed her back, thanked her for asking me, but suggested to her that “this topic has been done to death. If you Google ‘what not to say to breast cancer patients,’ you’ll see what I mean.” I provided a link to a post by another blogger, who has metastatic breast cancer, who’s written what I think is pretty much the last word on the subject: Stupid things people say to those with cancer & their families.
I then went on to say, “With respect, I think there are a lot more apt and important angles on breast cancer that you could write about, especially for a media outlet as esteemed as _____. For instance, how many of the 1300 breast cancer charitable organizations are actually involved in some kind of fraudulent fundraising practices?” I then referred her to my last blog post. The use of the word ‘esteemed’ might have been laying it on a little thick, but I was trying to be polite while thinking she was alarmingly unimaginative for a ‘senior editor.’ I closed with a bit of nicey-nice and sent it off.
A short time later, she emailed back, saying, “I can assure you that the team has a very robust lineup of content planned — not just this piece.” I thought her tone was a little snippy, but I suppose mine was, too. She did close with “Thanks.”
Naturally, I went to check out this news site. It’s a clean site overall, fairly well laid out, as these things go, not overly crowded with crap, as are some I could name, and it didn’t take a hundred years to load, as do others I could mention. And I found her name on the masthead, although not listed as a ‘senior editor.’ But I didn’t find a single report anywhere about breast cancer, or even about Komen’s latest nonsense with pink drill bits. And worst of all, I couldn’t find a search box either, so I couldn’t check the archives for the past few weeks since the month-of-pink-overload began. What kind of self-respecting media site doesn’t have a search box? Whatever ‘robust’ content they have planned, they better hurry up with it before the damn month is over.
Lions and tigers and bears! Oh, my!
I was never one of the really popular kids at school. But I always had a loyal band of misfit friends who stuck together. What we had going for us is that we were always nice to other misfits, and we knew how to laugh, and we mostly recognized bullshit when we smelled it.
Not so different from how my life as a blogger is now, really. Of course, I’m very grateful that people bother to read and enjoy my blog at all. Wouldn’t be half as much fun to write if they didn’t. But when you’ve been bullied from a young age by the ‘popular’ kids, and you’ve survived with your psyche more or less intact, you tend to grow up to be the sort of adult who doesn’t give a big, fat rodent’s derriere whether you’re popular or not. And you still tend to smell bullshit a mile away, or, at the very least, employ a certain healthy skepticism. I’ve come to view these qualities as advantageous in the social media world, as helping me preserve a little objectivity when I’m exploring certain subjects on this blog. I like to think I can trust myself not to get exploited by someone for their own self-serving purposes. But maybe I’m just paranoid. My mother had a personality disorder that caused her to see conspiracies everywhere, so you never know. Perhaps I’m not so much skeptical as delusional. I’ve been accused of worse.
But I can tell you, without delusion, that in the past month, I’ve received every manner of request to get me to lend my name, blog space, time, ideas, and tacit or explicit endorsement to all sorts of exploits. And these are just the few that have escaped my vigorous spam filter. Some of them are fairly harmless. Some are legit. But a lot of them amount to sales pitches, delivered under the guise of ‘supporting breast cancer awareness.’ I know for a certainty that I’m not the only one who’s received these requests. I know that many, if not most, of these people making these requests just do some kind of Google search for ‘breast cancer blogs’ and go to town. Hence, they do not make me feel special. Or popular.
I’ve received several requests to review as-yet-unpublished book manuscripts. These are generally sent by other members of the cancer club who have written a memoir or a novelized memoir. These requests are a little heart-breaking. All of these authors mention how they wouldn’t have gotten through their ordeals without the laughter and support of their friends, bolstered by cake, retail therapy, or trips to the local day-spa, which, it must be said, was basically my strategy. One would presume they asked their friends to read their stories first. But after that, why not then find one of the several professional editors out there who make a living reviewing manuscripts? Why ask me? Sure, I used to be a professional editor, almost thirty years ago, but there are only fourteen people in the world who know that.
Likewise, I’ve also gotten a few requests to review and endorse songs, written to encourage us during Pinktober. I can always use a little encouragement, musical and otherwise. But generally, I turn to music that has nothing to do with cancer when I’m feeling disgruntled. Somehow I doubt these folks sending me iTune links know that I tried to be a rock star in my youth, or that I’ve written and recorded a number of songs that parody the experience of enduring cancer treatment and the barrage of pinkwashing that’s gone with it. Frankly, I’d rather watch a Weird Al video than listen to yet another person telling me what a hero I am. Bleck.
Then there are the requests to exchange links and/or to post something about some splendid product that is sure to make my life as a cancer patient much more tolerable. These include cookbooks, Japanese dietary supplements, and special services for breast cancer patients like retreats to find one’s ‘inner warrior.’ One of the more entertaining of these was for a wrist band (pink, naturally) infused with peppermint to be worn over a certain pressure point on the wrist, which is supposed to help control nausea. One may order these wristbands at a discount by visiting their website and entering the code ‘SAVBOOBS.’
Pay no attention to the man behind the curtain.
Among the more insidious offers are invitations to visit sites that are presented as supportive, informational online venues designed to help patients figure out if they are being adequately tested after initial diagnosis. They have names like KnowYOURBreastCancer.com and MyBreastCancerTreatment.org. Far be it from me, a staunch advocate of informed consent, to eschew gathering as much information as possible when one has been told one’s biopsy is positive. The two sites mentioned describe the benefits of molecular diagnostic testing, specifically the Oncotype DX test, which can be used to help determine whether chemotherapy would be beneficial, and to calculate a recurrence risk for those with early-stage breast cancers, including the risk for invasive recurrence with DCIS. Not a thing wrong with that.
There are a few things about these sites that I do take issue with, however. One is the fine print. Unless you look for it, you’d easily miss the fact that each of these sites is maintained by companies who manufacture such tests, Agendia in the former case, Genomic Health in the latter. They are not the only companies who make molecular diagnostic tests for breast cancer, but these two want you to ask your doctor to request their tests. To my mind, this occupies the same continuum of advertising as those ubiquitous drug commercials on TV that encourage you to tell your doctor to prescribe a specific medication for heartburn, say, or arthritis. To that end, additionally, both Agendia and Genomic Health have Facebook communities. Agendia’s is called Symphony Sisterhood for Breast Cancer, the ‘Symphony’ being a panel of four tests that analyze breast tumors. Genomic’s Facebook community is called Until Every Woman Knows. Both Facebook pages invite individual women to share their stories. I received an email invitation last week from a PR firm to allow myself to be featured on one of these Facebook pages as a way “to honor people who are using social media to raise awareness about breast cancer.” Several dogged minutes’ worth of investigation brought me to the corporation behind the invite. But I didn’t find it on their Facebook page. In the ‘About’ section of both of these community pages, the corporate names behind them are not mentioned.
Somewhere over the rainbow.
Regular readers of this blog know what a snarky bitch I am. Appropriately enough, the last time I used The Wizard of Oz metaphorically was in another post about the risks of exploitation by social media. But, however much I may let the fur fly here, I do try not to be unnecessarily rude to individuals. I politely declined the invite from the PR firm, saying that I did not normally allow any corporation to use my name or blog, because occasionally, I write reviews of research about such things as molecular diagnostics, and I would prefer to maintain my distance and objectivity. The response to this was an offer of links and videos describing the research their client had done about their products. There was some back-and-forth on this, but overall, it was a cordial exchange, devoid of snippiness.
We’re all grownups here in the blogosphere, and each of us has to decide for herself how to manage her social media presence. Me? I’m still the kid who was bullied as a child, who’s grown up to be a perennial skeptic. I like to think I’m occasionally performing a kind of public service, but maybe I really am just paranoid and deluded.
“…If I only had a brain
I’d unravel any riddle
For any individ’le
In trouble or in pain…”