blame and doom and gloom

Dear Wishiwere,

I think you gave good advice.  I know when I get really sensitive (I have good and bad days)  It helps to know that people can respond in loving ways and also in stupid inmature ways.  And words hurt!!!

Hugs to you Carol, I understand how annoying it can get.  Just know its their problem - not yours.

Shirley

dx 4/07   total left breast mastectomy 5/1/07

no nodes, 6 months chemo (cmf) arimidex since 1/08

Carol, that's pretty amazing. I cannot believe you have people sending you that crap.

I think if I were you (and I know it's different when it *is* you) I would say something like: "Thank you for thinking that I would be interested in this information; however, I am not acquainted with this individual so I would prefer that in the future you refrain from informing me of deaths and funeral arrangements. Thank you for respecting my wishes on this."

If they persist, block them.

Carol,

People are just plain crazy. When I told my best friend about my dx, she told me about a friend of hers who was dx and dead within 6 months. I just looked at her and could not believe it. This is the woman I was looking to for support.

It does seem like everyone wants to share their horror stories with me. I posted on another thread that sometimes I get so mad, I want to say "Have you had that mole on your face looked at? I knew someone who had that and had to have their nose removed." See how they feel! But of course, I am not going to lower myself to their standards.

I have another good friend (bc survivor 10 years) who has throat cancer. I have another friend who just died of throat cancer. I have made it a point never to mention him to her. I screwed up when I told her I attended a "celebration of life" dinner. She asked me what kind of cancer he had. I stuttered and apologized and said I never meant to scare her. I also let her know he had esophageal cancer and she has squamous cell cancer. I still felt pretty bad about it.  

Sometimes, we just have to be blunt and let them know "I don't want negativity, only positivity. If you cannot provide that, then please don't share anything me".

Debbie 

I'd like to think that the deodorant question was raised out of care and concern, but that would really be giving "people" a lot of credit.

I don't get the forwards of strangers who have died (and BTW - I'd put a stop to it if I did!) but I have a couple friends who forward me every BC related petition or awareness story floating around the internet. Hello... I'M AWARE!

I don't think people who haven't had cancer can truly understand. It IS annoying though! Maybe they are lurking here and learning.
Hugs

Erica

It reminds me of when my mother died and the first card I got was from a woman I worked with that said "may your beautiful memories sustain you."  It just enfuriated me because what I was dealing with was not the beautiful memories.  It seems like everyone I've told has responded out of their own Stuff - like one woman who burst into tears because her mother had bc when she was 15 and she still feels bad about the way she treated her. 

Many people have been great though!  Another thing - all those people who say to let them know how to help & they really want to do something.  What do you tell them?  Recently I've been telling them to have a mammogram! 

k....I would so normally NOT do this but, I believe completely that anti-perspirants help BC rear it's ugly head and I for one, have not used it since the day I was dx. I use baby powder instead and I only apply it after at least an hour after shaving my armpits. 

There are just WAY too many "againsts" on this subject. Here are just a couple after 2 minutes of Google.

http://www.controlyourimpact.com/articles/antiperspirants-aluminum-and-breast-cancer/

Research studies of underarm antiperspirants or deodorants and breast cancer have been completed and provide conflicting results.

Can you say CYA? "Neither the American Cancer Society nor the deodorant companies we contacted say they have seen any evidence for a link with breast cancer. And while we don't necessarily advocate using these products, we thought you might want to know that there are antiperspirants on the market, that you can get at about any drugstore, that do not contain aluminum salts if it is a concern for you."

A new piece of scientific research, published in the Journal of Inorganic Biochemistry has shown that a common ingredient of deodorant may be putting you at risk for breast cancer.
Scientists from the UK have found that the aluminum content of breast tissue and breast tissue fat was significantly higher in the outer regions of the breast. This is, of course, in close proximity to the area where there would be the highest density of antiperspirant.
Other recent research has linked breast cancer with the use of aluminum-based, underarm antiperspirants. There has been a known, but unexplained, increased incidence of tumors in the upper outer quadrant of the breast which seems to support such a theory. The identification of the actual mechanism of antiperspirant-induced breast cancer has been quite elusive, however.
This UK team (Keele University and Wythenshaw Hospital, Manchester) measured the aluminium content of breast tissue from breast cancer patients at Wythenshaw and published their findings of this increase, potentially due to the aluminum content of antiperspirant deodorant.
Aluminum salts are a major ingredient of some deodorants, and these salts have long been associated with cancer, as well as other human disease. The daily application of aluminum-based antiperspirants most likely results in the presence of aluminum in the tissue of the underarm and surrounding areas.
Each of the patients in the study had tests which showed "a statistically higher concentration of aluminum in the outer as compared with the inner region of the breast." The authors also state that there is evidence that skin is permeable to aluminum when applied as antiperspirant. They have not yet discovered the direct evidence that the aluminum measured in these breast biopsies originated from deodorant.
Still, these findings and previous research on the same subject have certainly increased the sales of products for "natural" or "healthier" deodorants that are free of aluminum salts.

k....I'm off that soapbox.

Hope I didn't offend anyone.

Traci

This topic never grows old!

I have an well-meaning aunt who works for a health care provider - she emails me every "informative" newsletter she receives that pertains to breast cancer, estrogen, or preventative measures to prevent cancer (any type).   At first I would read them and sit there wondering what the "message" was???  So many articles made me feel like I could have prevented the BC from occurring, even though I knew that what I was reading did not apply to me and the whole thing is a crap shoot anyway!

Now I just delete the damn things and try not to feel bitter.  I know in my heart she means well, but every time she or my uncle gets sick, I feel like going on a google search to see if I can send her something as "helpful" as what she sends to me

I think the deodorant thing is due to people wanting to think they are in control somehow, if they use something that you don't use they can prevent BC. It sounds silly but its the only thing they can think of to help prevent BC, heaven forbid its in the air that we breath or the water that we drink or the food that we eat, it has to be something that they themselves have control over in their lives.

As far as the obituary thing, I would just send it back to whom ever was sending it and ask them to please stop sending me anything regarding BC. I had a woman at work after my dx say I know someone who had BC and is still going strong after 6 years out, then in the same breath tell me her best friend died 4 months after dx. I said remind me to never ask you for any support during treatment. 

I don't think they mean to be insensitive, they just blurt out the first thing that comes into their heads. I may have been guilty of this at one time or another, you think you are being supportive but it comes out all wrong. The two seconds after you say it, you wish you could rewind time and say something different.

The best responses for me have been a good hug, and them saying I am here if and when you need me.

Iodine, I think the only thing a positive attitude gets you through is treatment, otherwise you want to fold up and give up. Attitude has nothing to do with living IMO, if it did more women would be alive today. Just from the few ladies that I have read about here that are gone, they had positive attitudes and so much to live for and they are gone. Most of them kept their positive spirit right until the end, giving their families & friends a light to help them through the pain of losing them. God Bless all of them and their beautiful families

Carol-

Loving reading the conversation your post on this very annoying but very amusing issue has generated. On the mystery person obits (SO obnoxious) how about contacting the sender and acting really confused and worried that you are losing your mind? "I got this in the mail from you so I must know her , but I can't remember her. I am so freaked out, what is wrong with me? Blah, blah, blah." Then they'll be on the spot of having to come clean that they sent you a random obit of someone you didn't know and give some kind of account of the thinking that went into this. I bet they'd never do it again and you'd have the fun of putting on this little act and making them sweat a little. Heh, heh heh....

Having a positive attitude can kill you!



I wish I hadn't had one and been pessimistic and not tried to "get on with my life". I might have caught my recurrence earlier.



Carol, how about saying something simple like "Please refrain from sending me obituaries of people who have died from breast cancer as these obituaries are very distressing to me. I'm already aware that many thousands die from this disease and I only wish to be informed about people I know. I'm sure you will understand."

Carol,

If the unwanted obits are coming via email, you could just send a reply email with the question, "Why are you sending this to me?".  That leaves the ball in the sender's court.  He/she will have to think a bit about the wisdom of sending an obit from a BC victim to someone who has been dealing with BC.  How dumb can people be?

Talk about coincidence.  Just a week after my mast/SNB in February, I received a solicitation letter from a cancer charity, asking me to contribute $$$ to support research on cancer.  Prominently displayed all over the solicitation letter was the BC pink ribbon.  At first I thought this was triggered by my dx. Turns out, the BC charity letter was pure coincidence.  It was from an organization I've never dealt with, and it was sent to a configuration of my mailing address I seldom use.

Other than that, I've been stunned by the appropriateness of the reactions I've received.  A week after my surgery, I sent an email to the people in the department where I used to work (I recently retired).  I explained what had happened, how I was doing, and what I knew about my prognosis and upcoming treatment.  I worked in a biomedical research area, so I included some technical stuff that I thought my former co-workers might find interesting.

I received replies from more than a dozen people, mostly wishing me well and saying they hoped I could resume my traveling soon.  Some of the most touching and heart-felt comments came from people I really didn't get to know very well while I was there.  (Ironically, a few of the people I'd worked with the closest and knew the best have not said anything.)  I received a couple of personal get-well cards with nice notes.  One person I had sort of "mentored" sent me flowers.  Several women said they appreciated my email, because it motivated them to get their "annual exams," despite their hatred for mammograms.

I haven't received any BC obituaries from friends or former co-workers, nor have I received any "hey, cancer's curable these days!" either.  One person did say she had heard chemo was "easier" now, which I guess is true if you consider the se's are more manageable.  People offer encouragement however they can, even if they really don't know what works best.  (We're all different in our needs, aren't we?)

The only gloom-and-doom has come from a few immediate family members who live hundreds of miles from here.  It's clear from their words and their tone-of-voice that they pity me.  I don't understand the source of the pity, and it makes me very uncomfortable.  So, it's ironic that I've been helped the least by people who are closest to me (except my dh, who's been wonderful). 

otter