Over the last week or so, I've noticed (or had brought to my attention) a series of articles discussing a phenomenon related to alternative medicine that I don't believe that I've addressed before, at least not directly anyway. I had filed some of these in my folder of topics for blogging, but somehow never got around to them because I let so much time and blog verbiage be dominated by a discussion of how Andrew Wakefield infiltrated the Tribeca Film Festival, only to see Robert De Niro reverse his decision a few days later and yank his film from the festival, after a brief attempt to defend the choice. Then, of course, I couldn't resist having some fun with the conspiracy theories that flowed afterward. And, before I get into the heavy stuff, I can't help but mention a little comic relieve, mainly that Wakefield's film Vaxxed will be showing at the Angelika Film Center opening tomorrow, April Fools Day.
That diversion aside, yesterday as I contemplated what to blog about it I saw that Steve Novella had written about the very phenomenon I had planned to write about and almost thought I had blown my opportunity. Far be it from me, however, to let a little thing like that stop me, particularly when the topic is one that I don't recall having directly addressed before and relevant to cancer patients and alternative medicine. I'm referring, of course, to the tendency for well-meaning people, many of whom are often woo-friendly, recommending all sorts of remedies to patients suffering from serious, even terminal illnesses.
The article that brought my attention to this was an advice column, Ask Amy: How do I keep people from offering alternative 'cures' for my husband's advanced cancer? A woman who bills herself as "Upset" (as well she should be) describes her husband being diagnosed with stage IV pancreatic cancer, failing two chemotherapy regimens, and facing a dismal prognosis of being unlikely to survive more than a year from his diagnosis, which, given that he had already undergone two courses of chemotherapy, would only be months. If you've ever had a close family member in this situation (or if you yourself are facing a serious or even terminal, illness yourself), see if you recognize this situation:
People we hardly know come up to us and tell us how various alternative medicine approaches (multiple herbs, specific diets, etc.) “cured” their loved ones and/or tell us how their neighbor, co-worker or friend has survived five, eight or 10 years or even that “they can cure cancer now.”
And:
I have tried to simply say “that’s interesting” to suggestions of alternative therapies and “how fortunate for him or her” to the others but, unfortunately, these people want to continue telling us what we should be doing or insisting that my husband can live a long time.
Because I see on a daily basis the deterioration in my husband’s condition, I find these comments and unsolicited advice extremely distressing.
In an attempt to end one of these unsolicited conversations, I told someone that they did not seem to know much about pancreatic cancer and walked away from them. I was later told that I was being rude. Can you suggest a polite way to shut these people up so they do not add to my stress and grief?
First, of course, it is not Upset who is being rude. It is these well-meaning believers in various forms of quackery who insist on continuing to make their suggestions, even though Upset has made it clear that they are upsetting, not helping, her. At the same time, they are acting out of what they perceive to be good intentions, a motivation to help and, in helping, to potentially save a life. After all, if you really believe that a treatment you know about can cure advanced cancer and you have a friend or acquaintance dying of cancer or who has a loved one dying of cancer, wouldn't you feel obligated to tell that person about it and try to convince the ailing person to try it? When you look at it that way, there really is a problem in dealing with such people if you happen to have a loved one with cancer, the most common precipitating illness for such misguided attempts to help, or another life-threatening disease.
Unfortunately, people like this make their suggestions so based on misinformation. Usually this misinformation is based on anecdotes about which they have incomplete information or that represent misinterpretations of what really happened of the sort that I've deconconstructed more times than I can remember on this blog and, when critically analyzed, don't actually show that the alternative treatment cured the cancer.
Amy's advice was reasonable. Pointing out that Upset should remember that these people's motives were good, she also suggested:
But please — do not engage in these conversations about miracle cures, even to the extent of pretending to listen. Look the person in the eye, say, “I think you’re trying to help, but this conversation is making things much harder for me, so please — let’s stop now.”
This is about as good an option as there is, or perhaps I should say this is probably the least bad option.
A couple of days later, Steven W. Thrasher hit the same notes in more detail in an op-ed published in The Guardian. Thrasher lays it on the line immediately from the very first sentence:
If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves.
And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either.
The motivation for this article was the second anniversary of his sister's death, who suffered from a rare sarcoma for 15 years before finally succumbing two years ago. Thrasher nails something about alternative medicine in general, and alternative cancer cures in particular, that I've been emphasizing for a long time, having written about it as recently as last week. I'm referring to the mentality that implies that all cancer is curable, if only the patient would only do the "right" things, pursue the "right" natural treatments, and have the "right" positive attitude. As I've discussed before many times, this attitude is very much like The Secret, the New Age mystical belief system that claims that you can have anything you want if you only want it enough and have a positive attitude. Basically, at the heart of The Secret is an idea known as the Law of Attraction, which states that you attract from the universe what you think about and desire, or, as one Secret maven put it, "Thoughts become things." In other words, your mental attitudes draw people and things of like intention.
While this is trivially true in one way that has nothing to do with the mysticism of the "universe" sending you things because you want them and/or have a positive attitude, it also has a dark side. That dark side is the flip side of the message of attracting good things to yourself with desire and a positive attitude. Specifically, that flip side implies that if you don't have good things or are sick that you've somehow brought it on yourself through your desires and "negative" attitude. In the case of disease, this has particularly pernicious consequences. While on the surface it might seem "empowering" to believe that you have the power to cure disease and make yourself healthy, that dark flip side to "Secret"-like thinking is that if you are still dying of cancer you brought it on yourself and/or just don't want to be cured badly enough. It's just as I said last week. When alternative cancer cures don't work, it's always the patient's fault for not having done it correctly or not having tried hard enough.
This is basically what Thrasher describes:
Over the years, it was painful for me to see people tell my sister (and me) that she could just cure herself if she really wanted to. Didn’t she know that if she just drank lemon juice every day she could wipe out her cancer cells? That if she’d just watch that Netflix documentary The Gerson Miracle she’d be OK? That if she were only willing to take vitamins, or eat raw food, or do yoga or look on the bright side of things, her illness would go away?
It's The Secret in action, and patients suffering from cancer and their loved ones hate it—for good reason. In fact, Thrasher goes beyond that and characterizes such offers as "act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer." I'm not sure I'd go that far, but then I haven't experienced what Thrasher has experienced. True, my mother-in-law died a horrible death of breast cancer seven years ago, but I heard very few offers of alternative medicine cancer cures. Perhaps that's one advantage of being known among your friends for writing a blog like this. I don't know, however, how many suggestions of such "cures" my mother-in-law endured before the end.
Thrasher lists three reasons why he thinks these offers are acts of "violence." Reason one:
First, it’s condescending. If lemon juice really cured cancer, don’t you think we’d all be dancing around citrus trees? That lemonade would be traded on Wall Street and hedge funds would be peddling lemon-flavored credit default swaps? More importantly, when someone has had cancer for months or years – maybe living through hours of doctor appointments, days in hospitals and months in bed – don’t you think they’ve had time to consider every possible option with the seriousness their own mortality deserves?
I frequently point out to the conspiracy theorists who think that "they" are keeping "natural cures" for cancer from you in order to make money that we who take care of cancer patients would be overjoyed if someone could demonstrate that lemon juice (or something else as simple) cured cancer. I also point out how impossible such a conspiracy would be to keep secret given how common cancer is and how pretty much everyone who lives long enough will witness a loved one die of cancer. Do such idiots really think that, if we knew of a cure, we'd keep it from our family members and friends? Then, once out, the cure would be everywhere. Basically, no group as large as scientists, physicians, and the pharmaceutical company could keep such a thing secret for very long. It's utter nonsense to imply otherwise.
Reason number two is one manifestation of The Secret:
Second, it could be argued that people giving advice are just trying to “do something” and kindly offer help. But I reject this: if you want to do something to help someone in distress, as George Carlin famously riffed, unplug their clogged toilet or paint the garage. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death. You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.
Exactly. Reason number three is a variation on the same theme:
Finally, giving advice to people with cancer blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. As the authors Barbara Ehrenreich and Sarah Schulman have shown, we have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them. Having cancer or caring for someone with it understandably causes fear, anxiety and depression. Expecting someone to have a Positive Attitude™ when they are facing mortality, or telling them they’ve missed a simplistic way they could have avoided their fate, further isolates and shuns them.
Again, it might seem "empowering" for people to think that they can cure their cancer with magic herbs, shooting coffee up their butts, thinking positive thoughts, or doing yoga, but it's not. It tells people battling cancer and losing that they didn't do enough, that they could have prevented this if only they had wanted it badly enough and had a positive enough attitude, that their impending death is at least partially their own fault. Believe me, cancer patients ask themselves every day if there was something they could have done to prevent this or something they can do to arrest the inexorable progression of their disease. In the case of diseases linked with various lifestyle choices, such as smoking, the regret can be overpowering. Even in the cases of cancers much more weakly associated with lifestyle factors, cancer patients are constantly asking themselves, "Why me?? They don't need to hear the implied answer from well-meaning friends of, "Because you don't want to get better badly enough to chase after these cancer cures I'm telling you about."
The third article showed up a couple of days ago and describes another price that is paid. We've seen this before in posts I've done, but this story is about a famous Indian actor who appeared in Malayalam films who unfortunately developed cancer at young age. It was initially successfully treated, but recurred and ultimately took his life at age 35. After his recurrence, he experienced exactly what Upset experienced, only on a grander scale because of his fame:
Death may be the ultimate equaliser, but famous people have to deal with fans eager to cure their stars. Circumspection when it comes to free advise is not an Indian trait. In the age of Facebook and Google this enthusiasm often turns to unhindered medical ‘knowledge’ and personal stories based on wishful thinking not science. Everybody has a cousin in America and an aunt in Coimbatore as well, with several tumours disappearing to the surprise of western medicine.
Jishnu Raghavan had his dose as well, of people asking him to try remedies like Lakshmi Tharu (simarouba glauca) and Mulathu/Mulethi (graviola). He tried the various cures and as he wrote on his Facebook page, he found himself in a dangerous spot. Not wishing to hurt his followers, he left a note saying goodwill is one thing, holding out hope of cure is quite another especially as he was battling for life.
As a result, Jishnu posted this on Facebook last April:
Friends I am getting a lot of suggestions to take lakshmi tharu and mulatha.. This was popularised through social media...I took the risk of trying it on myself and many other popular alternate medicines suggested by friends and family.. It couldn't control my Tumor and rather took me to a very dangerous situation.. I will never suggest it as an alternative to the already proved medication.. Maybe after a formal medication all these can be used so that it doesn't return back.. I wish and pray there is further study and research on all these to create a proper medication for cancer..Please don't advice this to anybody as an alternative to chemotherapy or any formal medication and mislead people.. It is very dangerous... And never believe forwarded messages in social media blindly.. I was declared dead a few months back by social media and here I am messaging you..
It's not as though Jishnu appears to be in any way anti-alternative medicine either. The first comment that shows up after this post is him telling his fans that he doesn't mean alternative medicine is wrong and that he understands "that we have diverted ourselves from our taditional living methods we are getting all these kinds of deseases." He even mentions that he would use "ayurveda and homeo to deal with the aftereffects of the treatment that i am going through now and see to it that i follow ayurveda for a better life ahead." That he felt obligated to say these things after asking his fans to stop sending him recommendations for alternative cancer cures gives you an idea of the effect these stories have on cancer patients. They know that these recommendations come from a motivation to do good, to help save them. They also know that these alternative cancer cure testimonials can give false hope or simply put the onus on them for being sick.
As Steve Novella observes, seriously ill people do not need your well-meaning medical advice. If they want medical advice, they will ask you for it. Do not offer it unsolicited, as it only makes them feel worse about their situation, in essence shaming them for being ill and not fighting "hard enough" or having a "positive enough" attitude while making you feel better about yourself. Instead, offer them the help they need, whether it's to watch their children or drive them to a doctor's appointment. George Carlin, it turns out, was right about this.
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Back when I was about to have my radical prostatectomy, one of the fellows whom I work with gave me a present, a giant bottle filled with some sort of herbal remedy. I had never heard of it, and I don't remember what it was at this point, but I looked it up, and I saw that it had anti-platelet activity in pharmacological doses. Needless to say, it went right in the trash, which is where it would have gone anyway, but I was quite offended. This is a bright guy who should have known better.
I told him that I could not take it, and he said that I should do whatever I want.
I have to say that I remember that as one of the more unpleasant episodes of my experience. I would have been better off if he had not done that.
My dad has psoriasis and lactose intolerance. Someone suggested "skin salts" for his psoriasis and so he happily started gulping them down thinking it was minerals the skin needs to be healthy.
Naturally the small text on the bottom of the back of the bottle said it was homeopathic. I got the pleasure of informing him that he'd been taking nothing but lactose to treat a skin condition that he generally has under control by getting plenty of sun and using sorbolene.
You should have seen his face! (Not the skin, the expression.)
Every cancer patient has the experience of unsolicited advice. Every cancer patient has someone tell them something along the lines of "my aunt had that and she died." Not ever patient asks "Why me?" because it is a huge slippery slope. We all hear stories about miraculous cures and about celebrities and regular folks who, now making a living off alt. med, are saying they didn't do straight ama treatment, but upon further inspection did. I had breast cancerr 6 years ago. I did the whole AMA route to deal with it and have spent the last 6 years doing alt stuff to rebuild my body and it's immune system. Some of those things are straight forward--eat right exercise--some are suppliments given through a dr. However while I agree that a positve attitude can't always cure sometimes it seems to and the bottom line is that one is much more pleasant to be around and has a better life when having one. We are all making a wild guess--the drs and the patients when deciding on cures--yes we know certain things work but not on everyone and not all the time so we put the facts together and roll the dice. And pray, And eat right and take the meds.I did all of it but when I was going through chemo I hated the people who wanted me to....xyz immediately because thier cousins friend's sister had done it. I got tired of people who imply that what I did--chemo, surgery was not necessary and I could have done x and been cured. I listened to my drs and I followed their advice because that is why I hired them. I also got tired of people who told me they would never do chemo. All I could think is that that decision looks very different when it comes after the words, "You have cancer."
In other words, don't just do something, sit there. Consider how you would feel if you, or your spouse/sibling/parent/child, were the one with the terminal illness. The doctors have done what they could, and the best they can do at this point is to minimize the suffering that you will either experience yourself or see in your loved one. Advice about a miracle cure will sound condescending at best, and at worst will produce unnecessary short-term suffering in pursuit of a false hope. Not to mention the con artists like Burzynski who make their living from people in this kind of situation.
"But I reject this: if you want to do something to help someone in distress, as George Carlin famously riffed, unplug their clogged toilet or paint the garage."
OMG this, a thousand times this. And for someone caring for a cancer patient, offer to do laundry or go grocery shopping or clean the kitchen or make a week's worth of casseroles to freeze. There are the things that fall by the wayside when someone is that ill. These are the things that keep the caretakers up at night, on top of the rest of the stress of caring for someone who can't even swallow or sit upright.
"Do such idiots really think that, if we knew of a cure, we’d keep it from our family members and friends? Then, once out, the cure would be everywhere."
Sorry, but I'm keeping what I know secret. The money from maintaining the status quo is just too good.
I hear the meme about mainstream medicine keeping simple, safe, cheap cancer cures under wraps all the time. It doesn't matter to alties how ludicrous and offensive this claim is - it has irresistible appeal to a certain type of mind.
The following remains one of the best articles I've read on the Cancer Cure Conspiracy:
https://www.sciencebasedmedicine.org/the-hidden-cancer-cure/
There's another layer of blame that's sometimes placed on patients and those who love and care for them - that it's the "toxic" conventional treatment that's making them so sick. So poisoned and so weakened that the MMS and IV H202 might not work anyway. . .
It's not just cancer that attracts the quacks - try having any long-term condition, such as MS (which I don't recommend). Because the *precise* mechanism behind MS is not known, that leaves room all kinds of quackery to creep in. Start with the usual suspects (mercury fillings), breath in some hyperoxidation (hydrogen peroxide, hyperbaric chambers), to dangerous surgical procedures on the basis of very loose correlation ("liberation therapy" venous stents) - it's all there!
Positive attitude does not cure any disease but allows you to accept what needs to done to try to reach a cure (if possible). Having positive attitude allowed me handle all the events, tests, chemo, radiation, during my treatment for prostate cancer. One more low PSA test in May and I should be able to say I am cancer free.
Just recently, a friend was diagnosed with a fast growing brain tumor. A week ago Wednesday she was sent from her doctor's office to Harborview. She had surgery on Friday (the tumor was about the size of a computer mouse) and the surgeon stated that she would have been dead by Sunday if they hadn't operated.
I did the best act for her that anyone could do; I took in her two dogs. She told me her biggest worry had been taken care of when I took the dogs.
The best news is the type of cancer has a decent chance of at least remission if not a cure.
This is a bit of a tangent but on the theme of this problem extending to many, many other medical issues, as a few of the commenters have mentioned.
I am fairly competitive in (age-based!) sports. Woo abounds in this crowd. Mention a muscle ache or persistent issue of any kind is certain to elicit referrals to naturopaths, chiropractors, and various herbal remedies and diet recommendations.
The thing is performance is quantitative. The clock is an absolute measure of whether a therapy works. So when something is tried and time doesn't improve is the person cured of their attraction to woo? No.
A common reaction I've heard is for them to claim they would have done worse if the chosen therapy hadn't been tried. Then they go on to try something else in the futile pursuit of shaving seconds from their time. It never ends. You soon learn it doesn't pay to politely try to redirect their enthusiasm toward reality.
Then there are the pharmavores (as I'll call them). These are people with treatable (or untreatable) conditions (e.g. obesity, back pain) that they attack with real pharmaceuticals from real doctors. They reject woo but consume pills of almost every description, risking harm along the way. They shop for doctors that will cater to their demands. The mentality at work is similar to woo. They even trade ideas on which drugs (and doctors) to try next.
I used to get all kinds of recommendations for what to do to deal with my depression. "Just get more sunshine!" or "Take valerian root," or this that or the other herb or supplement, or "Go on a gluten free anti-inflammatory diet!" and so on. This was, in particular, the approach taken by my Portland friends. A friend in Ann Arbor sold me a bike she didn't use anymore for cheap, and that was actually helpful.
Funny, nobody seems to be interested in hawking me "natural cures" for a manic episode. Perhaps they are a-scared.
When my husband was diagnosed last fall with stage 3c colorectal cancer, We were fortunate to receive real support from a dog walking neighbor, our daughter's friends who helped her have a normal teenage life, rather than being constrained by her father's treatment, and a very accommodating workplace that allowed me real flexibility. Only One idiotic suggestion to altie treatments (Hulda Clark). While I considered my response polite, if abrupt, had it continued, a suggestion to insert cranium into rectum would likely have occurred.
What Double Shelix said.
It is not just human medicine fraught with suggestions of woo for incurable/serious diseases. I lost a beloved dog a few weeks ago to osteosarcoma. I am a science-loving, statistics-understanding, well-trained veterinarian, and STILL I got "you should try turmeric" or "why didn't you amputate and try Dr. Quack's miracle nightmare solution?" And the worst "You know you didn't HAVE to euthanize him." I was unseemly to the last one. I have no idea how I would have responded while my mother was dying of a horrible chronic disease--probably horribly.
This is a little off topic, but a little not off topic. (Orac, delete if this is inappropriate please!)
Years ago I told a dear friend that I had been sexually assaulted as a teenager. Their response was to wonder sort of negative thoughts and attitudes I must have had to "manifest that in my life."
We weren't friends for much longer!
"Claims that you can have anything you want if you only want it enough and have a positive attitude" are hardly restricted to New Agey woo like The Secret. They're ubiquitous on every sports broadcast, interview with a successful performer or business person, and every form of motivational speaking or self-help seminar/book/video/whatever. Barbara Ehrenreich's 'Bright-Sided' is a masterful critique of this BS, which stems out of her experience with how people treated her when she had breast cancer. And this was less about woo recommendations specifically but about attitude and resolve more generally, “If I don’t get better, it’s my fault,” she told the NYT.
I blanche every time I hear the familiar lines, "You're going to beat cancer" or "[Patient J. Doe] beat cancer." Uh, it's not a basketball game. My best friend in this area, recently retired, learned just this month that he has an aggressive prostate cancer that has already metastasized to his hip-bones and spine. I'm going down to the peninsula for a cook-out at his place Saturday, the first time I'll have seen him since he got the news. If anyone there tells him "You can beat it, Bob" or some such, I know I'll want to go upside their head...
I read the Steven Thrasher article and whooped then sent it to my brother as it says exactly what I need him to hear, although in my case it's a chronic pain condition not cancer. I hope he understands and accepts what the article says as it will make seeing him and his partner a lot more pleasant. And I've bookmarked it for future use as I know it will be needed again. *sigh*
There's a phrase I learned form a friend of mine who has RA. "As well as possible". For people with serious chronic conditions (like RA, MS or cancer), the meaning of "good" and "well" are shifted from what healthy people mean by that.
My friend said "I'm never going to be well. But some days are better than others, and I'm doing as well as possible."
And 100% on the importance of "being there" for friends and family who are sick. I recently visited a friend in the psych ward (not the worst experience I've ever had, but not something I'd care to repeat) and he insisted that it was very helpful.
Then again, I've had family who announced a serious diagnosis and ended the e-mail with "please don't call or e-mail for a week". (We can be a bit over-involved.)
I get pissed off enough with endless woo recommendations for my migraines. God only knows how difficult/enraging it must be for someone with a really serious or terminal illness to listen to the crap spouted by well-meaning people. I'll stick to the sumatriptan, thanks.
Brian t says (#8),
It’s not just cancer that attracts the quacks
MJD says,
An expert can be a quack too.
Dr. Greg Poland at the Mayo Clinic says that getting a flu shot during pregnancy could reduce autism risk.
Doctors that promote flu shots during pregnancy in an effort to reduce autism, which has unknown etiology, are also quacks.
http://newsnetwork.mayoclinic.org/discussion/flu-shots-during-pregnancy…
MJD, do you know why it's recommended that pregnant women get flu shots?
Visits were very helpful; in fact, they were the only thing that kept me tethered to outside life and feeling human when I was "locked up" and, due to mismanagement on the part of the hospital (well, busy doctors, three or four different shrinks, a social worker out sick) didn't know when - or if - I would ever get out.
JP, it's good to know that visits are actually helpful. It happened to be Super Tuesday when I visited, so when my friend asked about the news I was a little hesitant.
Then he told me the head nurse had suggested that he watch Inside Out, which is a lovely movie I would never in a billion years suggest to someone who's having a hard time distinguishing between awake and asleep.
My advisor brought me a flash drive loaded with The Matrix and a bunch of zombie stuff. Not the best idea, he might have been taking recommendations from his wife. (She's big into that kind of stuff.)
I did watch some of it once I got out (the nurses wouldn't let me have it when I was in, plus I had nothing to watch the stuff on it with) and it was from The Matrix, I think, that I got the idea that "lithium is for batteries, not for people and horses."
Horses because horses, I guess. Old Roma and pioneer stuff in my head or whatever.
Although I really couldn't handle the side effects of the lithium (corroborated by friends, I would get super loopy and conk out as soon as I took it) and I'm a difficult blood draw, which resulted in at least one fairly traumatic experience.
Oh well, one lives and learns.
(Bipolar runs in my advisor's family, so he wasn't shy about visiting, at least.)
An apt quote from Marcus Cole, a character on "Babylon 5':
"You know, I used to think it was awful that life was so unfair. Then I thought, wouldn't it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So, now I take great comfort in the general hostility and unfairness of the universe."
I have found a useful to shut down preaching and this kind of unsolicited advice.
Do not engage them.
Stop cold.
Put on a poker face.
Look the person straight in the eye for three to five seconds.
Quietly and with as little expression as you can put into it say once "Go away." Don't say anything else.
Maintain cold stare as long as necessary.
Often just the stare and silence alone are enough. It also helps if you can channel Christopher Walken at his creepiest.
I went out to dinner once with a small group of friends and a friend-of-friends-of-friends. The latter was a very stereotypically new-agey blowhard (a *serene* blowhard) who offered opinions about this and that until he somehow steered the subject onto cancer, and the (to him) sad-but-obvious truth that people get cancer because on some level they don't appreciate life and want to die.
Somehow restraining my head from exploding, I told him truthfully that I had a friend who recently died from cancer, and that she had loved life and had said she did not want to die and that I saw no reason to disbelieve her. I asked him, "This thing you just said— can you tell me *why* you believe it? What led you to have that opinion?"
He literally couldn't say. I don't mean that my response was so brilliant that it made him rethink his worldview... more like he somehow had been lucky enough up to that point to never, ever have to have that conversation with someone for whom the subject was a real thing and not an idle mind-game. So there was just a very long embarrassed silence, he changed the subject to (I think) yoga, and then whoever brought him apologized to me later.
As usual a great article but I am commenting to thank all who have posted comments. I really appreciate people sharing their stories in forums like these.
It happened to be Super Tuesday when I visited, so when my friend asked about the news I was a little hesitant.
Because American politics makes it seem unfair that some people are in psych wards while others are allowed to roam free?
Well, now that you mention it.
The first psych ward I was in was playing the news a lot for a while in the kitchen/TV room, which I found somewhat distressing, though it did lead to some interesting conversations with visitors and other patients. Eventually they started switching to a lot of nature shows, which I found much more soothing to the "soul."
Great article and great comments from the readers. I've been lucky, and I'm surrounded by people who are sensible and caring and know me well, so I've been fairly shielded from the self gratifying 'helpful' comments. People who do this remind me of the sort of people who give unsolicited compliments and then get cross when it doesn't lead to gratitude - they're doing something they perceive to be nice so they can get rewarded for it, not to be of help.
Now, people I know and love have said things to me about remedies they've heard of, and of amazing survival's, but in their case I know that it comes from that genuine need to help, and these people also provide me with more tangible help so it hasn't upset me.
It required insistence? I dunno, this is something I've been doing on and off for nearly 30 years,* including a state-run facility. One doesn't get to choose one's company in a locked ward; unless told otherwise by the person one wants to visit, I'd just keep in mind that any prolonged hospitalization is, at a bare minimum, boring as hell.
* Depending on definitions; might just be a quarter-century. I've yet to be confronted with hospice visits.
^ I'm also reminded of this item from Pierre Franey (I have a disintegrating copy of the collected 60 Minute Gourmet; the link was the best I could find).
^^ No, wait much better link.
The food at the first hospital I was at was surprisingly good, and you could get pretty much as much as you wanted; there were also miniature pizzas in the fridge, plenty of chocolate milk and juice, etc.
The second place was rather more stingy for whatever reason, and the food wasn't as good, so the snacks my advisor's wife brought me when she came to visit were much appreciated. (She also brought lotion, for whatever reason, which I used, and a bunch of CDs; I managed to commandeer one of the radio/CD players from the activity room for myself, which helped with the boredom.) Her brother has been hospitalized multiple times, so I suppose she knows the drill. I taught her how to make origami cranes, I suppose, in return.
My advisor, on the other hand, insisted on conversing about poetry and poets pretty much until he had to leave, at which point I tried to convince him to help get me out of there, and, when that failed, collapsed on the bed and started sobbing about wanting to go "home." (He made no motions of comfort, but he is not terribly touchy-feely. He did at least stay in the room, but was trying to lecture me about something or other.)
If anything good has come of this whole fiasco, my brother actually sent me some money to buy a place ticket home to visit. I have been buying my own plane tickets out West for my entire graduate school career, and it's nice to finally have a little help.
I know someone who has started a PhD on the general topic of "Appropriate and inappropriate things that people say to adolescents and young adults with cancer", so I've referred her to this post for additional data.
There is probably a PhD to be done in "Inappropriate things that people say to PhD students", but that's another topic entirely.
Don't remind me of my "advisor." The sidelining at Second City should have been warning enough, but I was naive.
It's the "battling" and "fighting" that annoys me.
If I ever have any form of cancer I intend to follow the lead of a colleague's partner (he was an IT nurse by trade), who "had" leukemia, insisted on the finest chemo and radio therapies known to man and a marrow transplant, gave no shrift to anyone who came near him with any class of woo or "think positive", and made the most of the time they had left together...
In fact, as I am not as nice a person as he was, I fully intend to be pretty damn' obnoxious to any woo or positive thought or whatever suggestions...And will insist on the finest vintages of chemo...;)
Oh yes, a thousands times.
A former colleague of mine, a young PhD, spent a lot of her free time babysitting the children of a couple she knew, where the husband had a terminal cancer, and generally helping the parents with the house's chores.
And also, helping the parents decide how to announce the bad news to the children, a topic which became more and more urgent, as it was clear the father only had months left.
She displayed hidden depths in these trying times.
Trying to put myself in the parents' shoes, I can only start to imagine how helpful having a trusted friend sharing the load, physical and emotional, could have been.
I had a manager who would urge me to see her kinesiologist every time I had a workplace injury. She claimed that his aura reading fixed her up every time.
I had to hide my irritation due to fear of being punished for not supporting her woo.
Mine has stepped up his game since he got tenure; or maybe it's just that I went crazy and am being much more closely monitored these days. Probably both.
As a colleague of mine says, "Geez, if that's what has to happen in order to actually get some mentoring around here, I dunno."
Below is something that I've sent to several friends with terminal cancer. It is from 23 years ago but I still reflect on it as if it was given yesterday.
On March 4, 1993, Jim Valvano was awarded the inaugural Arthur Ashe Courage and Humanitarian Award at the first annual ESPY Awards. Following is his acceptance speech (edited).
Thank you, Thank you very much. Thank you. That’s the lowest I’ve ever seen Dick Vitale since the owner of the Detroit Pistons called him in and told him he should go into broadcasting.
But, I can’t help it. Now I’m fighting cancer, everybody knows that. People ask me all the time about how you go through your life and how’s your day; and nothing is changed for me. As Dick said, I’m a very emotional and passionate man. I can’t help it. That’s being the son of Rocco and Angelina Valvano. It comes with the territory. We hug, we kiss, we love. When people say to me how do you get through life or each day, it’s the same thing. To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.
It’s so important to know where you are. I know where I am right now. How do you go from where you are to where you want to be? I think you have to have an enthusiasm for life. You have to have a dream, a goal. You have to be willing to work for it.
I talked about my family, my family’s so important. People think I have courage. The courage in my family are my wife Pam, my three daughters, here, Nicole, Jamie, LeeAnn, my mom, who’s right here too. That screen is flashing up there thirty seconds like I care about that screen right now, huh? I got tumors all over my body. I’m worried about some guy in the back going thirty seconds? You got a lot, hey va fa napoli, buddy. You got a lot.
I just got one last thing, I urge all of you, all of you, to enjoy your life, the precious moments you have. To spend each day with some laughter and some thought, to get your emotions going. To be enthusiastic every day and as Ralph Waldo Emerson said, “Nothing great could be accomplished without enthusiasm,” to keep your dreams alive in spite of problems whatever you have. The ability to be able to work hard for your dreams to come true, to become a reality.
Jimmy V Foundation for Cancer Research and its motto is “Don’t give up, don’t ever give up.” That’s what I’m going to try to do every minute that I have left. I will thank God for the day and the moment I have. If you see me, smile and give me a hug. I’m going to work as hard as I can for cancer research and hopefully, maybe, we’ll have some cures and some breakthroughs. I’d like to think, I’m going to fight my brains out to be back here again next year for the Arthur Ashe recipient. I want to give it next year!
I know, I gotta go, I gotta go, and I got one last thing and I said it before, and I want to say it again. Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.
Coach Valvano died shortly after this.
I hope that if I get cancer, the people around me will remember that I'm the same person, and continue to treat me the same way they always have: I won't suddenly become brave or receptive to woo.
I learned that when my mother had breast cancer a few years ago (she's fine as far as we know now; thank you, NHS). She's not an easy person, and I realised that having cancer didn't turn her into another person, that mythical person who "battles" and "fights" with grace and dignity, as a lot of people seem to want you to be. She was still manipulative and demanding - the same person, but with cancer.
More recently, a beloved friend died of cancer, aged just 55. He'd had a rough four years with myeloma and he got very thin and frail before dying in February of a chest infection. Right the way through, though, he was still John - he liked lunch in the pub, he was implacably opposed to cooked cheese (except on pizza). I had lunch with him in the pub four days before he died, and although he looked awful ("I look like a concentration camp victim", he grumbled) and was very frail, he was still himself. I haven't been left with a memory of him as a "cancer victim"; my memories are of John.
Both he and my mother taught me such an important lesson and it's one I'll carry to my own last days, and remember every time cancer crosses my path.
Somewhat tangential to the OP: what do you say to people who (in a social setting) insist that nothing can be done about cancer and most people die of chemo?
Usually these people are my elders, so I don't want to just say "that's not true". I've tried "Treatments have really improved a lot in the last X years", but they insist that everything is still terrible. Generally this comes up when they learn that I work in cancer research.
I feel like I'm missing an opportunity to educate people, but I'm not sure I should push back at all.
I have watched a desperate 29-year-old mother juice carrots and go through chemo and surgery. I don't know if she believed the juice would save her or if she was just willing to try anything. I was only eight and she didn't share those kinds of things with her children. Her friends have told me in my adult life that even two days before she died (developed pneumonia) she was talking about getting better and going back to being a mother.
I deal with chronic illnesses and live with an alternative health fanatic. When I went home for my grandmother's funeral this January and saw the Noni juice and supplements in my favorite aunt's house I realized why I originally could believe some of what he knew could be plausible.
Personally, it does feel a little insulting having someone insinuate that you are not trying to find every possible cure. It is even more infuriating to have similar people suggest that their pet woo's (especially Reiki or faith healing) failure to improve your condition is your fault (or my very favorite, demonic possession is at fault).
That happened more than five years ago, and I still am absolutely floored that someone could be so convinced of their own magical powers that the only thing they could believe possible when their powers failed was that, not only did I "want to be sick," it was a spirit creature from help making me want to be that way.
When my favorite Chinese restaurant owner developed stage IV cancer, I helped his wife apply for social security for him, and sat with him when she asked me to. No woo required.
An Onion article that's pretty applicable here:
Loved Ones Recall Local Man's Cowardly Battle With Cancer
http://www.theonion.com/article/loved-ones-recall-local-mans-cowardly-b…
I just didn't tell anyone and went quiet on Facebook so I didn't have to have people worrying about me or offering 'advice'.
As a patient in Chemotherapy, my response to these pesky, often ignorant, people is: "Can you provide me with reference to a study showing the comparative benefits when compared with today's Standard of Care?" Since they have none, they are perplexed, and usually respond with something like, "Well, I have a friend (of a friend...) who did it and survived!" as if that settles it. I thank them for their concern, and tell them "I'll look into it." And, invariably, I find there's no evidence, no cure, just more quackery or pseudoscience. Fortunately, the numbers for my chemotherapy are exceptionally good, and despite the therapy's side-effects, I am expected to survive for quite some time.
It always perplexes me that well-meaning adults, eager to "help" will say the first thing they can think of to exhibit "compassion" about my illness. I usually remind them of the truth with a simple definition of "life" as I know it: "Life: A sexually-transmitted, terminal disease." That way we can both laugh and move on to other topics.
As a sufferer from an agressive Crohn's disease, I really thank you for this blog post... I am so tired of people telling me to watch my diet, exercise more, try not to worry about life or just rest.
Not only are those advices completely useless and irritating but they make you feel as if your disease was not so serious.
Until now I used to simply not respond.
Been to numerous doctors they gave me NO solution to my problems. Went to a MD who was also into functional medicine.
found out I had a methylation problem,I was given herbs. supplements, as well as a diet to follow..BINGO. now I advise people. Think outside the box
Yes my health is not controlled by Big Pharmaceutical which treat the symptoms and not underlying cause
Okay, everyone! Carol found the solution to everything and has convinced us with her unverified anecdote, so now we can all stop pushing reality!
now I advise people.
Why does that not surprise me?
I suspect that Carol did not bother to read the actual article at the top of the page, which is just about her type of behavior.
I've no idea what a "methylation problem" is, but apparently (according to Google Uni) it has something to do with (among other things) digestion. It is also genetic. So ironically, I am pretty sure you, Carol, are just treating the symptom and not the cause with a change in diet.
Maybe Carol has methemoglobinemia, which is treated with methylene blue. It could conceivably be the source of a misunderstanding that would lead to the conclusion of a "methylation problem".
treated with methylene blue
It is also good for treating "insufficiently blue urine".
I have several chronic conditions, one of which causes me to be very susceptible to minor illness. My boss has repeatedly told me that if I only took echinaeca, ate lots of green vegetables and cut back on my carbs, I'd surely find my health improving. She seems absolutely convinced that I'd get better if I only took 'immunity-boosting' supplements and had the right attitude, and that my susceptibility to illness is a sign I'm not trying hard enough.
I work in a doctor's surgery, and my boss is a registered nurse.
Ialia: Yeah, RNs tend to be infected by woo fairly easily. It's a job hazard.