Lets do a Sh*t People say to Metastatic BC Patients
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Most of you know I don't get upset or offended by people's comments, adverts, or the color pink. I'm quite easy going about most things. However an acquaintance from my flight attendant days posted something on FB that raised my hackles. Additionally, I was stupid enough to continue arguing with her. She posted a link to natural news, an article by Mike Adams( the health ranger) calling mammograms a medical hoax. Additionally she spouted some barely informed info about how doctors are urging women to cut their breasts off because of "some gene". I challenged her on this, acknowledging that mammos are not perfect and that some doctors order the BRCA test without genetic counseling, but overall the medical profession has many, many caring and competent practitioners. She came back with some story about aspartame and macular degeneration and a story about a chef who cured herself with diet alone. When I asked if the chef could share this diet with others, so it could be replicated and studied there was no reply. When I asked if those who are big pharma get cancer or if their loved ones get cancer, no reply. Here is the kicker, she has no health insurance so gets no medical care or screenings. She surmises that perhaps this is why she is so healthy! i.e. traditional medicine has not "found" a disease to cure in her with their treatments and meds that do more harm than good. There was also a lot about what she has read over the years about breast cancer and other aspects of traditional medicine. Really? Really? You are saying this to a stage IV bc patient who has, not voluntarily, become all too well informed about bc. Sheesh!
Caryn0 -
Doesn't that just piss you off.
My mom and step dad were pushing the baking soda cure at me, and some sour-sop fruit thing last week when they were here.
My step dad has skin cancer on his lip and his "treatment" at the moment is dumping vinegar on it and drinking baking soda. I just want to scream at him. Just because it's on face book does not give it any damn credit!!! It takes all of 5 minutes to google this crap and see that it is bunk info. Baking soda cures cancer...if only we were so lucky.
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Arm and Hammer should only be so lucky!
Caryn0 -
Caryn, it might be time to unfriend or block that dingdong. I'm sure she has many fine qualities, but she has extremely poor judgment in sparring with you who have a life PhD in the damn disease--and probably the entire health care system. I almost went to town on my local co-cop newsletter editor for running an article by a woman who claims to bea nutritionist about turmeric and its "miracle" qualities for cancer and other diseases. The article said everything a health journalist or trained editor NEVER says about a food or treatment or discovery, including the word "miracle." It also said people in India have less cancer than Americans "because of turmeric." As if there aren't thousands of other factors and differences between Indians and Americans, including whether India has a system of documenting disease and death among most of its population, that might come into play in cancer numbers. I was repulsed because there are people who will avoid scientifically proven treatments and instead run to the store and buy bottles and bags of the spice and start eating it in everything, when they don't even know what quanities are needed or even if the health-enhancing qualities come through eating it or through some other way of being administered. I decided not to spend my time writing a scathing letter. It is such an uphill battle. So I guess I saved my rant for you all!
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I woud defriend her, I truly can not stand people with that kind of mentality. Truly.
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Thank goodness I don't know her well. Though she also told me that during the London Olympics, the female beach volley ball players would be forced to cover up so as not to offend Muslim viewers. When I pointed out that I had watched several matches and the players were wearing bikinis she said she had seen them in long sleeved shirts and leggings. Yes, they most certainly did when the weather turned chilly! Yes, de-friending imminent.
Caryn0 -
I was at my X-mas party last night and one of the wives mentioned that it was really hot in the room. I agreed as sweat was rolling down my neck. She told me she was hot because she was going through menopause. I told her that my cancer loves the hormones, so they put me in menopause too. Then she asked what estrogen drug I was using to help with the hot flashes. I repeated that i can't have lthe hormones because of the cancer. This is a smart woman. I just told her that I can have estrogen. Then she asked me if I was estring. I don't even know what the hell that was, but I was starting to get really jealous that she could take something for her menopause symptoms.
I don't think she knew I was IV, so I wasn't upset when she asked me how many more treatments I had left. I said the rest of my life and she still looked confused. This is were I hate telling people that this is terminal and it's not like I'll be doing chemo for that long. I hate having that feeling like I need to lie and protect people from mortality. I felt like I slapped her in the face.0 -
When I told my friend that I would be on anti-estrogen treatment indefinately, she asked if it would turn me into a man.
Of all the misunderstandings that I have gotten from people, this one is way more hilarious than hurtful.
Caryn, be extremely wary of the everything can be fixed by diet people. They don't understand anything.
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I told my sister that my aromatase inhibitors were going to turn me into a bald, fat man with nighsweats. Sounded like the perfect image to me at the time.
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Just Sue,
No worries, I am quite moderate in my habits. Yes, I believe a good diet is essential to keeping up my health but I don't believe diet is a cure all. I am just incredulous that she would say such things to a stage IV bc patient!
Caryn0 -
One morning as we have done for years we went in to paneras where we meet with friends for coffee. The other day one of the men said in a loud hardy har har voice, here comes HEDDA HOPPER! Referencing the hats I've been wearing. He himself had a good laugh as did the jerk who was sitting with him. I really couldn't believe it. We've known him for a long time and his wife just died of lung cancer a few mos ago, bald. She had one baseball hat and I'm wasting brain cells trying to figure out what was bothering him about my hats, why it was any of his business, and how he could shout out something so awful in front of the whole restaurant heads turning everywhere and a good time was had by all, except me!
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I try not to analyze jerks - it's too tiring. So sorry this dumb@#* made such a ridiculous comment to you! Puts such a damper on your morning out with friends. Hate to hear that you had to put up with such ignorance! People are crazy..
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Oneday - what an idiot. Part of me would suggest telling him off but it's probably not worth it. But if he ever made any kind of weird comment again, I'd say something to him about his unwelcoming comments. Pity the poor woman who was married to him.
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Thank you so much. I feel so much better. So glad I tattled to you about him. I could have thought it was my fault wearing so many hats. I never paid more than $6 for one and my daughter is making them for me and she can do it for $2 and they are nothing short of amazing, beautiful, and so attractive. I'd love to figure out how to show you a pic. Love and prayers. Marsha
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I totally love the bus reponse!
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(When asked to share details by one co-worker) another said, "You make me uncomfortable."
Seriously? My response, "It's not about you, get over it."
(I was bald with no eyebrows or boobs at the time). I didn't wear wig and I still don't wear fake boobs.0 -
Kavanagh, that's terrible. I would have loved to have responded to that person with: "No, you make yourself uncomfortable because you're superficial."
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Follow up: I did "unfriend" the woman I mentioned earlier. She swiftly sent me a message saying she was sorry if she offended me but...she simply couldn't understand why people unfriend each other over a difference of opinion. Then she said why teach children to get along if adults can't get along, have a civil conversation, agree to disagree etc. She really, really doesn't get it. I wrote her back and told her politely, but unequivocally how I felt, particularly that regardless of how much she read and studied she clearly knew nothing about bc and even less about stage IV cancer. I ended by telling her that I sincerely hoped she never would have to really learn about these things. Happily, I have heard nothing further from her.
Caryn0 -
Congratulations, Caryn! You handled it brilliantly. ...It's frustrating when people say they can't understand why people unfriend each other over a difference of opinion when opinion has nothing to do with it if they're ignoring facts, science, and common sense.
...How did she notice you unfriended her so fast?
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exbrnxgrl, that ex-friend has a lot to learn. It's one thing to have a difference of opinion over matters that are not personal, such as what's the best vacation spot, who's the best football team, was last winter's snowfall worse than this years, ect. ect. ect. She just doesn't get the fact that this is what you deal with every day and that it affects your entire world. It is so personal for us, and that should be respected by others if they truly want to maintain a relationship with us. It sounds much more like she wanted to ride her high horse and act as some kind of expert about the disease without ever having been in its trenches. Good riddance!
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stormynyte -
I just got around to reading your post about your fil using vinegar and baking soda for his skin cancer.
I've used a vinegar and baking soda mixture for years to clean my pipes (not my body or physically!), in the kitchen, bathtub and sink drains. Not sure if it works, but it's supposed to be a natural unclogger, lol.
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Ok - here's a good one. I was at the psych docs today (standing 3 month appt. for my antidepressants, etc.). I usually see the Nurse Practitioner (the same one each time, for years). Today was the first day I'd seen her since my dx in Oct of this year.
Me: I have Stage IV Breast Cancer
She: (not looking up from her incessant typing of my info in to the computer) Oh, sorry to hear that.
She: So how's your mood?
Me: Well, since it's in my bones and lungs, it hasn't been really great.
She: (looking up now, with shock) You mean you're Stage IV AND it's spread???
Me: Uh, yeah - that's what Stage IV means.
She: Proceeds to tell me the story of her friend who died of breast cancer. (Therefore has no excuse as 1) a medical professional and 2) a witness of what this disease did to her friend NOT to know what Stage IV is).
It is truly, TRULY frightening to me the rampant ignorance about this disease. Not to mention beyond annoying.
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I had to go to the dentist to have a temporary filling put in, and I wanted to be sure the dentist knew that I had to take precautions with dental work because I had metastatic cancer and was on Zometa. The dental hygienist, in her early 40s, squinting and looking puzzled, said, "What does 'metastatic' mean again?"
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I was diagnosed from the start, stage iv one year ago and I was (and still am) full of hope and saw a Psychologist for the first time (and only time) and he said to me "I was intellectually dishonest" for having hope and "I should call hospice".
Another oncologist I saw told me "he would not take half of the things back there" meaning the chemo drugs etc. I only saw him one other time and he asked me "how are you bowels doing" and my reply was "great, I was not having any issues and he told me I will be."
Moving on now to the world famous MDA, they told me to come back in three months, I asked if I would be alive and the oncologist told me to "come back in two".
I had a temporary stent placed into the ureter in May, I never heard from the urologist again and made an appointment and saw him on Monday of this week and he told me I looked great and "lets face it, no one expected to see you again" I exclaimed "what" and his next reply "well it's true".
Talk about brutally honest, there you have it.
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Not brutally honest, brutally stupid. And how rude! You can live years and years with MBC now a days. That is horrible.
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LiWoG, it's incredulous that doctors would say such things to you. It is amazing that medical professionals can have such false perceptions of stage iv disease. That goes for the ones treating Liz and Surly, too. When I hear of these stories, it makes me ever so greatful to have this forum where we can share our knowledge.
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LiwoG -
Oh my God - those are absolutely the worst stories I've ever heard. I'm enraged and speechless at the callous way you were treated. Not to mention how wrong they were, as obviously you are still here! Ugh!
LL0 -
LiwoG - you need to find some new doctors. Horrible.
LizLemon - I would tell the nurse practicioner next time you see her that it is NEVER helpful to hear a story about someone who died of anything when you have cancer. Idiot.
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Annie - I know right???? And in a shrink's office no less! It must be a full moon or something!
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Thank you all for your kind words. My husband and I were devastated in the beginning with the words spoken over me. The diagnosis was bad enough.
And yes, this site was an enormous blessing for us both, seeing all you remarkable woman with this disease allowed me even greater determinaton that life can move forward, as woman shared their experience. I will always be grateful. Love to all.
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