I just found out that my multiple myeloma is relapsing; lots of plasmacytomas, though my blood tests are still good. I was waiting to do yet another X-ray study when another multiple myeloma patient greeted me. She had just come out of the X-ray room. We spoke briefly about 'what comes next". She's finishing up a course of treatment; she's in complete remission. She's deciding whether to go on maintenance and wanted to know some of the side effects I'd had.
A young woman with a baby overheard us, and when my friend left, she turned to me and said that if I would only go on a vegan diet and go off chemotherapy, that my cancer would go away. She was utterly serious, very concerned, and downright evangelical, with missionary zeal. I said 'thank you for your advice," and, thank heaven, she was called in before she could pulpit pound.
Don't get me wrong here. I know pulpit pounding. I used to be a missionary and did a lot of that. I'm still very passionate about my religious beliefs, come to think of it, but, er, I wouldn't go up to someone who was in trouble and tell them that joining my church would solve all of 'em. For one thing, it wouldn't. Darn it.
Ah, well.
So, this isn't the first time this sort of thing has happened. I'm sure it won't be the last, and I'm equally certain that everybody here has had similar experiences. What do you say to these people? (And I'm sure you know that 'vegan diet cures everything" is one of the milder silly solutions being handed out.)
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What do you say to people who offer unsolicited advice?
I have the same experience. Well-meaning people can be very annoying if they try to engage me in a discussion of their "cure" approach.
Over time I have gotten better at dealing with this. Now I usually thank them and change the subject, or excuse myself.
Hang in there,
David
Over time I have gotten better at dealing with this. Now I usually thank them and change the subject, or excuse myself.
Hang in there,
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: What do you say to people who offer unsolicited advice?
Hi Dianaiad,
Greetings to you.
Treatments have been unnecessarily delayed and lives have been lost due to these well-meaning alternative therapy enthusiasts. To the best of my knowledge, there are no effective alternative treatments for multiple myeloma, although certain diets and minerals / vitamin supplements may help with some side effects of the illness and the treatments too, BUT it is important to obtain the advice of your health professional before taking anything.
Best Wishes,
Victor L
Greetings to you.
Treatments have been unnecessarily delayed and lives have been lost due to these well-meaning alternative therapy enthusiasts. To the best of my knowledge, there are no effective alternative treatments for multiple myeloma, although certain diets and minerals / vitamin supplements may help with some side effects of the illness and the treatments too, BUT it is important to obtain the advice of your health professional before taking anything.
Best Wishes,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: What do you say to people who offer unsolicited advice?
Dianaiad:
I am so sorry to hear about your relapse, and pray that they get your plasmacytomas in control quickly.
I am going to be a little snarky now, and I don't mean to offend anyone on this forum, but here goes: I completely understand your frustration with people who offer up unsolicited "suggestions". I too have experienced this, and I decided that I am no longer responsible to make people "feel good about themselves" or somehow justify their insensitive and frankly ignorant comments. So now if someone mentions to me something so ludicrous that "if I go on a vegan diet my cancer will go away", I either laugh out loud, as if they surely must be joking, or if I am in a particularly snarky mood, I say "Hummm, that's very interesting because I was on [insert their ridiculous recommendation here] BEFORE I got cancer, and I was wondering if it had anything to do with my GETTING cancer."
I don't think it's our responsibility to make these people feel smart, or good about themselves. As ignorance is no excuse in the law, it should also be no excuse for giving unwanted or unwarranted medical "advice".
Sorry if this sounds mean, but with the fight that all of us have with this cancer – that none of us asked for, or did anything to "deserve" – dignifying ridiculous comments is not something that I will take part in any longer.
Will be thinking, and praying for a quick remission for you.
All my best,
Kathleen
I am so sorry to hear about your relapse, and pray that they get your plasmacytomas in control quickly.
I am going to be a little snarky now, and I don't mean to offend anyone on this forum, but here goes: I completely understand your frustration with people who offer up unsolicited "suggestions". I too have experienced this, and I decided that I am no longer responsible to make people "feel good about themselves" or somehow justify their insensitive and frankly ignorant comments. So now if someone mentions to me something so ludicrous that "if I go on a vegan diet my cancer will go away", I either laugh out loud, as if they surely must be joking, or if I am in a particularly snarky mood, I say "Hummm, that's very interesting because I was on [insert their ridiculous recommendation here] BEFORE I got cancer, and I was wondering if it had anything to do with my GETTING cancer."
I don't think it's our responsibility to make these people feel smart, or good about themselves. As ignorance is no excuse in the law, it should also be no excuse for giving unwanted or unwarranted medical "advice".
Sorry if this sounds mean, but with the fight that all of us have with this cancer – that none of us asked for, or did anything to "deserve" – dignifying ridiculous comments is not something that I will take part in any longer.
Will be thinking, and praying for a quick remission for you.
All my best,
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: What do you say to people who offer unsolicited advice?
Thank you.
I have to say that 'snarky' is often tempting. I rather like your version of 'snarky,' actually!
Strangers are annoying, but whatever happens, they go away quickly.
I have a friend, though, who is 'into' holistic health nutty stuff. As in seriously off the rails nutty. Don't get me wrong here: I love her dearly and she is one of the most talented artists I've ever seen, not to mention sweet and caring.
But oh, my. I can't go to her house and have dinner. She laces everything with saffron when I do. Have you ever thought about eating yellow saffron flavored ice cream? Saffron french toast? Saffron spiced eggs?
Mind you, some of that stuff is great, but sheesh. Why saffron? She read about curcumin and wants to make certain that I get it from her if no place else. the problem, of course, is that curcumin comes from turmeric, not saffron, but she figures that both tend to turn the food yellowish. Saffron is more expensive (and thus 'better'), and she really dislikes turmeric, so (sigh).
I gave up a long time ago with her, actually. I just love her and eat saffron eggs. Which, by the way, are rather good.
We just deal with this stuff, right? Humor is also good. Wish I had a few more witty (though mostly gentle) come-backs.
I have to say that 'snarky' is often tempting. I rather like your version of 'snarky,' actually!
Strangers are annoying, but whatever happens, they go away quickly.
I have a friend, though, who is 'into' holistic health nutty stuff. As in seriously off the rails nutty. Don't get me wrong here: I love her dearly and she is one of the most talented artists I've ever seen, not to mention sweet and caring.
But oh, my. I can't go to her house and have dinner. She laces everything with saffron when I do. Have you ever thought about eating yellow saffron flavored ice cream? Saffron french toast? Saffron spiced eggs?
Mind you, some of that stuff is great, but sheesh. Why saffron? She read about curcumin and wants to make certain that I get it from her if no place else. the problem, of course, is that curcumin comes from turmeric, not saffron, but she figures that both tend to turn the food yellowish. Saffron is more expensive (and thus 'better'), and she really dislikes turmeric, so (sigh).
I gave up a long time ago with her, actually. I just love her and eat saffron eggs. Which, by the way, are rather good.
We just deal with this stuff, right? Humor is also good. Wish I had a few more witty (though mostly gentle) come-backs.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What do you say to people who offer unsolicited advice?
I just tell people I'll ask my doctor. I do what she says.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: What do you say to people who offer unsolicited advice?
Thank you Dianaiad. Interesting question. I love your posts, so well written and informative. Very sorry about your relapse and congratulations on the wedding. What an emotionally complicated couple of weeks.
You have some interesting responses today. For me, I don't think I deliberately want to make someone feel bad for a well-meaning, even if ill-conceived, suggestion. Maybe "Thanks, I'll take it under advisement" works well enough.
I am all open to hearing other ways to handle unsolicited, particularly off-the-wall, advice.
You have some interesting responses today. For me, I don't think I deliberately want to make someone feel bad for a well-meaning, even if ill-conceived, suggestion. Maybe "Thanks, I'll take it under advisement" works well enough.
I am all open to hearing other ways to handle unsolicited, particularly off-the-wall, advice.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: What do you say to people who offer unsolicited advice?
Diana,
I love your posts since most of them are laced with a little bit of humor. You of all people should have fun with this!
Really, what color vegetables? Green or Yellow? Asparagus makes my urine turn colors and that interferes with my tests, can you recommend another vegetable? Spinach? Hmmm, no, I'm already taking blood thinners, so that's out.
I get this question from well meaning people, too. The level of their zeal has an inverse effect on my ability to remember that what they are saying comes from a place of love or at least caring. I usually listen for a bit and then tell them that what they are saying could very well be true for other cancers, but unfortunately myeloma isn't a cancer that responds well to a natural approach.
Lyn
I love your posts since most of them are laced with a little bit of humor. You of all people should have fun with this!
Really, what color vegetables? Green or Yellow? Asparagus makes my urine turn colors and that interferes with my tests, can you recommend another vegetable? Spinach? Hmmm, no, I'm already taking blood thinners, so that's out.
I get this question from well meaning people, too. The level of their zeal has an inverse effect on my ability to remember that what they are saying comes from a place of love or at least caring. I usually listen for a bit and then tell them that what they are saying could very well be true for other cancers, but unfortunately myeloma isn't a cancer that responds well to a natural approach.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: What do you say to people who offer unsolicited advice?
Diana,
Sorry to hear about your relapse. I pray for effective treatment for you. Do you know what that is yet?
Your post prompted me to get some things off my chest..
The friend who's "done a bit of research" and concluded that multiple myeloma is "totally curable". When someone came out with that, I was aghast, smiled politely, and thought 'you should talk to my oncologist'.
It took me all day to figure out what to do, and I finally came up with a text message saying: "I love your positive attitude, it inspires me. However, my oncologist snuffed when I mentioned a cure, he said, in the 2 decades he has dealt with multiple myeloma, he can count on the fingers of one hand how many patients have reached permanent remission"
I continued "websites that say multiple myeloma is curable are very valuable to me at the moment and could you forward any you come across."
And bless him, he was straight back on the web, doing research and sending me articles. Most speculated that a cure might come soon. And that was actually helpful to my state of mind. It helped motivate me to do more research and now I believe that a cure is not that far off.
As an aside, it took me quite a while to go from thinking I needed to fire my oncologist, to just deciding not hang on his every word. His counsel when I had MGUS was, he knows a man that had MGUS for 30 years and it never progressed. I shouldn't be so worried. Well, my MGUS turned to multiple myeloma in a little over 2 years, and I felt like a sucker for even thinking it might not progress.
It certainly is a steep learning curve for me, emotionally. Quite a roller-coaster ride of ups and downs. So, while everyone I talk to might not say the right things to me at the right time, I really think that everyone who has talked to me has meant well.
Thanks for reading,
Tony Y
Sorry to hear about your relapse. I pray for effective treatment for you. Do you know what that is yet?
Your post prompted me to get some things off my chest..
The friend who's "done a bit of research" and concluded that multiple myeloma is "totally curable". When someone came out with that, I was aghast, smiled politely, and thought 'you should talk to my oncologist'.
It took me all day to figure out what to do, and I finally came up with a text message saying: "I love your positive attitude, it inspires me. However, my oncologist snuffed when I mentioned a cure, he said, in the 2 decades he has dealt with multiple myeloma, he can count on the fingers of one hand how many patients have reached permanent remission"
I continued "websites that say multiple myeloma is curable are very valuable to me at the moment and could you forward any you come across."
And bless him, he was straight back on the web, doing research and sending me articles. Most speculated that a cure might come soon. And that was actually helpful to my state of mind. It helped motivate me to do more research and now I believe that a cure is not that far off.
As an aside, it took me quite a while to go from thinking I needed to fire my oncologist, to just deciding not hang on his every word. His counsel when I had MGUS was, he knows a man that had MGUS for 30 years and it never progressed. I shouldn't be so worried. Well, my MGUS turned to multiple myeloma in a little over 2 years, and I felt like a sucker for even thinking it might not progress.
It certainly is a steep learning curve for me, emotionally. Quite a roller-coaster ride of ups and downs. So, while everyone I talk to might not say the right things to me at the right time, I really think that everyone who has talked to me has meant well.
Thanks for reading,
Tony Y
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Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: What do you say to people who offer unsolicited advice?
Y'know, research is good. Going on the Internet to find things is also good, though at first my oncologist told me specifically and with emphasis not to go to the Internet to find stuff about multiple myeloma.
I know his thinking; he's just trying to avoid, from his patients, the crazy stuff that we as patients get from well meaning family members, friends, and downright strangers, that we have to come up with non-insulting responses to.
Or maybe insulting ones, depending upon the place and mood.
The thing about the Internet is this: it is this miraculous open and literally universal library that has everything in it, and that's both the pro and the con of the thing. Everything means everything. The "Internet" is just a storage bin, not a filter or a review board. You reach in there and come out with everything anybody wants to put in there, good, bad, silly or outright ridiculous.
So you can't trust the "Internet" for anything at all, especially not 'The truth, by golly."
But in many ways you can trust that the Internet will have the truth in it, if you are willing to do the work and check out the original sources. If only those doing research wouldn't get caught up in the 'squirrel / shiny object' syndrome' and check those original sources, we'd have a great deal more success in looking.
I love the dedicated work that some of us in here do, digging out the peer reviewed studies, showing us the actual work done by doctors in the field, and you can bet that they didn't drive to the local hospital and look up the medical journals. They found this stuff on the Internet, and then checked the sources.
However, I haven't yet found a handy list of witty comebacks for silly people seriously giving me very bad advice.
Darn it.
I know his thinking; he's just trying to avoid, from his patients, the crazy stuff that we as patients get from well meaning family members, friends, and downright strangers, that we have to come up with non-insulting responses to.
Or maybe insulting ones, depending upon the place and mood.
The thing about the Internet is this: it is this miraculous open and literally universal library that has everything in it, and that's both the pro and the con of the thing. Everything means everything. The "Internet" is just a storage bin, not a filter or a review board. You reach in there and come out with everything anybody wants to put in there, good, bad, silly or outright ridiculous.
So you can't trust the "Internet" for anything at all, especially not 'The truth, by golly."
But in many ways you can trust that the Internet will have the truth in it, if you are willing to do the work and check out the original sources. If only those doing research wouldn't get caught up in the 'squirrel / shiny object' syndrome' and check those original sources, we'd have a great deal more success in looking.
I love the dedicated work that some of us in here do, digging out the peer reviewed studies, showing us the actual work done by doctors in the field, and you can bet that they didn't drive to the local hospital and look up the medical journals. They found this stuff on the Internet, and then checked the sources.
However, I haven't yet found a handy list of witty comebacks for silly people seriously giving me very bad advice.
Darn it.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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