I wrote Harm a few months ago and I thought it was all I had to say on the subject of the impacts of viral sensations and celebs touting their woo woo medical beliefs. Ah, when will I ever learn that for me in CancerLand, the case, whatever case, is so rarely closed. Sigh.
A few months ago a work-related acquaintance asked me about some clinical trials and/or info about more aggressive treatments for her husband with stage 4 brain cancer. The place where he’d been treated, incidentally where I had been treated also, had sort of written him off—nothing more they could do, get affairs in order, etc. This woman was having trouble getting cooperation in handing over his medical records so she could send them to bigger, more experienced places (read: less small town/in the boonies places) so they could get more aggressive or experimental treatment. (I’d had similar problems getting them to hand over my images when I was still a patient with them—I’ve since had to transfer to another medical system due to insurance changes on my part). I did what I could, asked for some help on FB, Twitter.
When I ran into her some time later, her husband was doing great! As well as I can understand her, yes, her husband did visit another medical facility in a less Podunk place than our town, but he had also started some herbal supplement/woo woo/beat cancer with blueberries stuff. When she told me what it was (and I’ve since forgotten—some herbal thing) I went to the website she told me about it, and it was VERY woo woo. She also talked a bit about B17—which I Googled and saw immediately it is touted as alternative cancer treatment. I backed away.
Now, as I said in the Harm post, people can “do” cancer however they wish—I guess. I have trouble when it comes to the proselytizing about woo woo treatment. I shy away from all the crazy sexy cancer type websites touting some vitamin, whatever drink, herbal stuff, and assorted other, uh, crap, claiming to cure/prevent cancer. No, I’m not some big fan of Pharma’s prices, and sure I get it, there are some invented issues made just to market some drugs—but there are many drugs that exist, because, you know, THEY WORK. And conversely I’m not saying eat bacon and ice cream and stay on the couch 24/7; make healthy choices, duh, but recognize those things are not a guarantee of illness-free immortality.
It’s about balance, not embracing extremes, and about seeing the big picture. And most of all, not blaming cancer patients—which I think is a result, indirectly and directly—of some of the eat right/don’t smoke/exercise lecturing that goes on. I wrote about that ages ago and still mean every word of Did You?
I encountered this acquaintance again a few days ago, and of course I was happy to hear that her husband is doing so great that he is planning to return to work. Quite the change, she crowed to me, from early this year when he was told he had 6 months at best. Yes, he’d gone and had treatment at a big city facility, but she is giving the B17 all the credit. She launched into a lecture about how doctors “never” talk about nutrition, are just drug-pushers, aren’t even taught more than some limited number of hours—out of years of schooling—about nutrition, vitamins, etc. She also began talking shit about the local cancer center—again, where I was treated as well—and their initial “6 months” pronouncement, how she does not trust the doctors, the medical industry and so on. She’d “read some stuff about it”.
I confess I lost my ability to smile and say how nice it is her husband is doing better. I just kept quiet as she continued chatting with our mutual client. This was a tough spot for me and I think I behaved poorly here.
Why is all this so hard for me? I, my own dumb self, have been often frustrated with the local medical system, which failed to correctly identify the big white area on my first ever mammogram as cancer, dismissing it as density (see What Is My Psychological Damage for the whole story there). I was correctly diagnosed 5 weeks later at another local hospital system (near my home, whereas the mistake was made, and I was treated at, the cancer center near my work, an hour away from home). I have lingering doubts about the general capabilities in diagnostics in the area—and I’m not the only one, and it isn’t just a cancer issue—according to horror stories told to me by my clients. But on the other hand, my treatment was exceptional—damn near cutting edge in that my oncologist was forward thinking enough to get me into chemo before surgery, which apparently is “new”—ugh, rolling my eyes, read Maybe Mayberry Ain’t So Bad for the whole story there.
I guess what I am saying here is that, yes indeed, the medical industry can use some improving. I get very annoyed when I read some blog posts on KevinMD where some professionals get very defensive about labeling us patients vs customers, the “satisfaction” metrics, and some interesting discussion on doctors firing patients who make poor diet and exercise choices, the responsibilities in that whole issue. But just because I disagree with what I read there does not mean I’m ready to dismiss the whole profession as stupid and evil, and start treating major illnesses with vitamins and herbs and nutrition, rather than medicine. Sure I would think twice about getting diagnosed around here, and I know how to advocate for myself better now. I get very upset when the discussions begin about patient satisfaction measurements being dismissed because some asshole patient gave a low rating because they did not get some stupid amenity like food or TV. Stuff like that is so stupid it should not be discussed, and patients should be told such complaints will not be considered. But, yeah, I’m a patient and I am paying for something (yes, my insurance paid, which I and my employer had paid into), so I am also a customer and my metric of satisfaction is getting a correct diagnosis. Of course learning cancer did not make me “happy” or “satisfied”, but being able to trust a professional to find a potentially deadly disease in me so it can be treated—well, that is a kind of satisfaction. I sure as hell would be unsatisfied if I died due to negligence, so to speak.
But speaking up, that is the point—to make it better, to improve. Not just chuck it all and swallow vitamins and kale. And then make videos or write books, as so many hucksters have done, touting alternative methods. People have these “beliefs” about cancer that seem unrelated to evidence (again, in Harm I discuss my queasiness about “beliefs”). If it works for some, as this acquaintance of mine so clearly believes, OK, fine. But what happens now, every time she opens her mouth to anyone who will listen? What is the harm to society in general when these conversations occur? People love anecdotes more than stats; numbers are boring, drama is better. And people love the underdog success story. People love to point to Stallone writing his own movie and getting successful; or the actress discovered in a restaurant—those one-time incidents—and believe it can happen to anyone, never mind the hundreds of others who write their own films or hang around hot spots hoping to get the big break, and they never do. It is the same in cancer. How many people shun the medical industry and die, while the one person who claims to have meditated and kaled the tumor away gets help up as the example, THE WAY?
I think again, grimly, about the “think positive” culture. Here’s an anecdote for all—an awful one. The woman who started the under 50 with cancer support group where I was treated was a sort of friend of mine—before either of us got cancer. She was a top volunteer for the non-profit I worked for in the latter half of the previous decade. She got two kinds of gynecological cancer, two separate cancers—not a spread, to be clear. She was treated and was a couple years out when I got diagnosed. She did the chemo etc. thing, but was into some of the woo too–integrative medicine. She gave me some acupressure bracelets to take the edge off of the nausea that first awful month of the Red Devil. She suggested some mushrooms from the health store which help prevent recurrence. She sat with me during that first infusion, suggesting I visualize the medicine running through my body, fighting the cancer. I never did that, I slept all the time. She was the poster child for the notion that keeping a positive attitude helps “beat” cancer. She moved away toward the end of my time in treatment, but she kept in touch with us girls in the support group. Not long after I completed treatment, she had a metastatic recurrence of one of the cancers; I can’t remember which. She died on a Thanksgiving Day. Moral of the story? The think positive person died, she could not rah-rah-fight cancer away. The grumpy Curmudgeon who won’t or can’t visualize, who won’t be rah-rah positive, who takes only a few vitamins at the behest of a friend/client, well, I’m still here for now. Not that I’m unhappy to have “survived” but this anecdote fills me with bitterness, even now, years later, as I write this. Yes, it an anecdote that supports my “belief” but it fucking sucks and I hate it.
Of course I do not wish my current acquaintance’s husband death just to prove the woo woo does not work. And I’m not going to get into some argument about how maybe it was some of the medical treatment working—I’m not equipped to do that. I will try to be better at being glad for them, and to just not impose my idea of how to do cancer on others.
Perhaps I should argue with her, but what would be the use? I doubt I will change her mind. On this blog and on my Facebook page I can say hey, do cancer your way, I don’t agree, and I can control the amount of woo appearing on my page, and I can just NOT go to the woo pages and sites. But how do I navigate in person disagreements? As I’ve mentioned before, my aunt who was diagnosed a couple months before me is a Pink, rah-rah, save the ta-tas supporter. We just never discuss cancer. I cannot. I would lose my shit. So I guess the thing to do is to smile, express happiness that all is going well, then leave the room.
But I am uneasy this week. Uneasy. I hope to improve how I handle this, because it isn’t going away anytime soon.
8 thoughts on “Harm Part 2”
*sigh* So, basically, this woman’s husband got treated at a what is likely to be a competent cancer center by competent doctors, probably with the best & latest treatment protocol they could throw at him, but she thinks it was the nutritional supplements that did the trick. You know, I think this is an example of how powerless people feel when they’re dealing with cancer. It does suck, as we both well know, to show up and submit to the ol’ slash/burn/poison protocol of cancer treatment, and it’s the reason why the reality of it is so NOT like ‘battling’ cancer. Where’s the battle? You show up, let them do stuff you scarcely understand, and hope it works. So, maybe crediting the supplements that she and her husband chose is her way of feeling like they could take some of the credit for how well he’s doing, instead of crediting all the unpleasant shite he no doubt went through that they don’t understand.
Yep, I think that is a big part of it: the powerless/control thing. And I guess a need to oversimplify all this stuff to understand it–a wish that we could just simply buy some stuff at the health food place, not have to go thru all the complicated treatment.
It is not my “job” to tell people they are “wrong”, just like I hated it that people would tell me to eat blueberries and to not do evil chemo, etc. This is just weird area to navigate sometimes. Sigh.
This story isn’t over yet. You don’t mention the time frame of your friend’s husband’s treatment or the exact type of brain cancer (primary? metastasis from elsewhere?). These things, along with the place of treatment, do color the picture and it’s good that he’s doing well. The woman’s enthusiasm for the supplement is what helps her feel better about the situation, more in control. But this story isn’t over yet. The supplement could be masking things or filling in long-standing deficiencies. I wish the woman’s husband well. She may change her stance later on depending on the outcome.
Oh you’re so right–the story will go on. She is not a friend, just someone I know in a work situation. To the best of my knowledge it is brain cancer that was diagnosed metastatic stage. And ultimately this is none of my business, other than the fact I was approached with this info. I sure got sick of people telling me how to treat my cancer, the did you questions and so on. So I have no intention of trying to change her mind. I think what I realized this week is that I have a strong opinion about the woo woo, and it is really hard to not speak up about it. That video the woman did a few months ago,described in part 1, it just seemed wrong for her to spread misinformation. Is it a responsibility to call that out? I just don’t know sometimes.
I am sorry about your friend.
This is something I struggle with too, when other patients (or families of patients) tell me they don’t believe chemo is the best option, even when they know I took chemo to treat my cancer–talk about having tact! My aunt who was dx with leukemia 3 years ago recently told me that if she ever faces cancer again, she is going to try something other than traditional medicine even though she is in remission thanks to the chemo she took (?). Now, she is my aunt, and I love her dearly. And because I love her, and I know she wouldn’t find what I say offensive, I spoke my mind to her. Yes, I too made the mistake to tell another patient how to do her cancer.
I think it’s all about who you’re speaking with and how much energy you want to invest in the discussion. Most of the times it’s not worth it to me to have the discussion and I try hard to keep the conversation short, and walk. But you’re so right when you say there’s a level of damage when people like your friend (the one with the now-healthy husband) go around telling people traditional medicine was not what cured the cancer. (And yes, I am still glad the husband is doing well.) There are people who believe this and make their medical decisions based on those half-told stories. When it’s cultural, it’s even tougher to deal with it. There’s too much improvement to be made, but like you said, society prefers drama.
Hmmm, is it easier to spend the energy on social media, like in the things I talked about in part 1? For me, yeah. And this is not a friend, just someone I see a couple times a month if that, we have a mutual client. So no, I don’t want to spend the energy, and that is why I just shut down the other day.
The inspirational story always “wins”–hell, even I space out when I read blogs I like that just over stuff with stats and numbers that prove things I already know to be true. I guess maybe that is why I told THIS particular story here. But I’m not coming to any conclusions, this is just a thing I’m trying to work thru. Sigh, one of the weird little things in cancer culture that I never thought I’d think about. Ain’t it funny (not ha ha funny)?
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I used to be very active on the crazy sexy website. What I got from it was a very positive attitude and eating healthier – think no twinkies more veggies. I am still in contact with some people from the site. But I did not go for the woo woo skip the doctor and you can cure yourself through herbals.
There is something to be said for keeping your attitude positive to help you cope. I would never skip traditional medicine for an unproven herbal.
Yeah, there is the whole integrative thing and if that works, great! But not sure anyone can say it was alt treatments that did the trick if the traditional treatment was in play too, perhaps it was both? But not for me to say.
Sure, the attitude thing has an impact on coping, but that too is different for some of us. I maintain as a Curmudgeon I’m happier when I’m grousing, staying with my true nature, what some would call “negative”, but I do not. For now, my final words on that topic are in the recent post https://anotheronewiththecancer.wordpress.com/2016/04/14/whats-good-for-the-cat-is-good-for-the-cancer-curmudgeon/