The dumbest things people have said to you/about you
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You are absolutely right. I love this site as I can come here and realise I am not a lunatic! I too have issues with all the "think pink" marketing, survivor status ( which I do want by the way but only for me to know!!)...it seems the people who organise these things with a good heart just don't get what it's like to be here. Things like the graveyard that was described above...WTF?? While this is my second diagnosis, this is the first time chemo for me...why oh why did it have to be October????
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I too was not into the rah rah party at Komen. I did not do the parade. I'm happy it helps some women but at times I felt like it was at a cult.
Yes I understand the parade give women hope but it seemed creepy to me. I started to look more into the American Cancer Society and Gilda's Club. Granted I will still sponcer my friends in the Komen walks/race. They do good things for some women and breast cancer just not my cup of tea.
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I have a different view. We survivors give voice to everything you are saying and I said alot of it out loud when I walked this past weekend. I have benefited from the money raised for research as I lost my mom to BC and her mother had it as well. My treatment was definitely different from theirs. There was a very large group behind us "firefighters for the cure." one of the women is a daughter of someone I work with. They acknowledged me and I loudly said this isn't about saving boobs, it is about saving lives. My SIL is a BC survivor, but also has stage 4 pancreatic cancer. She walks in a walk for that every year. People need to see there is hope.
Now the FB thing, I posted today that this "I like it" thing is supposed to be a thing for BC awareness and if anyone was going to post, they should first make a large donation to a worthy BC charity. I was not ready to do any of this the first 2 years, now I'm armed and ready to participate and use the opportunity to educate. 2 of my three DS's walked with me along with my DH. My sons did not know all of what I went through. It was a great opportunity to talk to them about it and educate them. It also helped me to reflect on my own journey.
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I don't think anyone has a problem with the walks and fundraising. I am the first to say that I support the fundraising 100% hence "I like it on the credit card". I will generously donate to the cause when the opportunity arises. I guess I am saying that I am just not ready to wear the tshirt or the badge. I am very private and I do not like feeling like I am on show. Perhaps my own sensitivity but, to me, to be involved right now is to ask for personal help...it just doesn't feel right to me. I am grateful beyond words to the people who raise the funds and lend their voice but I feel that the organisers should have walked in our shoes to ensure the correct sensitivity. I am more than aware that what I am saying is that I don't want to do it but someone else should....not sure why I can't but I just can't yet.
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I have done the walks, once in support of my sister and other survivors and a year later as a 2 time survivor myself. I actually like the walks and find them uplifting, especially since I was dx for the 2nd time the day before the last walk. I joined our local Susan G Komen as a volunteer and to make speeches for the Speaker's Bureau. Unfortunately, with my 2nd dx, I haven't been able to do much. I'm hoping I can after I'm done with chemo and radiation!
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Hi mumorange,
I understand exactly where you are coming from. I buy pink ribbons and then hide them in the bottom of my hand bag. I am over six years out.
By the way do you like the colour orange, live in Orange, eat lots of oranges, or all three??
Take care,
Sandy
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and Sandy, orange goes great with pink
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I participated in a MS walk several years ago after my diagnosis and I felt every range of emotions there were and at times it scared me even though I was with friends. Seeing a lot of the people in different stages was totally frightening as I just wasn't ready to face all that.
So far I have stayed away from the BC walks and such but perhaps sometime I will. I think you have to be at a certain stage for it. I also would imagine ( not been there) but that it might be easier to walk in support of someone rather than going yourself. However I do like the comment about how it gives hope to others.
as to the whole graveyard thing - what a terrible idea and such poor taste - they just can't have been thinking properly. I do think that organizers should have actual BC patients on board to give advice as to what might be offensive. I know they are doing this with good intentions but extra insight would certainly help.
As to the whole pink thing.... I don't know. A friend gave me a pretty little angle that is discreet and I could do that. My cousin's daughter made me some pink ribbon earrings which was lovely of her to do but I don't think I could wear them. It would make me too self conscience. It would feel like I'm advertising me and not the cause.
I do agree totally that if companies are going to make money being politically correct they need to back it up with substancial contributions not just raising awareness. Awareness if fine but it doesn't find the cure and ultimately that is all we want for us and expecially for our daughters and friends and future generations.
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When I sat with other survivors after our short walk, we all laughed and said quietly, "find the f**cking cure."
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boy, can i relate to almost everyone of those comments. my daughter, of all people, who is 38, can't understand the fatigue. she said that i need to push myself more! i can't explain the weakness that i had during chemo and radiation.
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Susanthur - I didn't have to do chemo but having MS I do suffer with fatigue which if you don't have it it is hard for someone to understand. It isn't like taking a nap will make it go away or sitting for a minute doesn't mean then you will have energy. What I told my kids was that when I'm feeling really fatigued then if I want that magazine across the room, I would need to really really want it cause it is going to take a lot out of me just to go a short distance plus I have to actually make my brain work to tell it to stand up and walk over. That seemed to help them understand it wasn't something that just meant I was tired. I would assume the chemo fatigue is similar from what my Mom went through.
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Here's my two cents on the subject of too much pink.
Many of my friends participated in the walk/run to find a cure for breast cancer, in different parts of the country, all wearing my name on their backs. They did it as a way to honor me and to raise money for the 'cause' to find a cure. Others have donated to various foundations in my name and still others are quite proud that they purchase the pink products on the shelves, all trying to make a difference and letting me know that they care. Perhaps all this pink stuff is too much...certainly the football players in pink was dramatic. But the one thing it all does is bring breast cancer into the forefront. Breast cancer awareness month is to get women thinking about mammograms and self exams and how random the disease is. We need a cure...we want a cure...and we want all women to be on alert so that if they do have the misfortune of being diagnosed with cancer, it will be found early. I'm not offended by the Think Pink movement, I just don't want to wear pink, nor be a poster child. But I support those who try to make a difference and get the message out, and raise or donate money for finding an end to this breast cancer nightmare. And if that means being attacked by a pink brigade everywhere I go, so be it. If you try clicking on this link or cut and paste it into your browser http://www.fox8.com/news/wjw-breast-cancer-vaccine-cure-cleveland-clinic-txt,0,5991875.story you will find the info on Dr. Vincent Tuohy at the Cleveland Clinic who is in the middle of developing a vaccine that could prevent or maybe even cure breast cancer. If buying pink M&Ms or a pink can opener will get money into his laboratory, well, at least this is a cancer people see, hear, feel...and care about. More than 30 years ago when my Mom had breast cancer, it was a taboo subject and something that somehow marked a woman. Back then they thought that cancer was catchy and that if you had it you were damaged goods. This era has embraced breast cancer as something to talk about and fight to overcome. So I say Hooray...GO PINK! Just don't make me wear it unless you are making a sizable contribution to an organization that is working toward an end to this.
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Stanzie - thanks for the explanation of the exhaustion you sometimes feel. It seems there should be a special word in English to describe that level of exhaustion, but if there is, I don't know it.
Everyone: I just saw, for the first time in more than a year, a younger woman in my neighborhood who battled bc perhaps 8 years ago.When I last saw her, she seemed to be doing fine. But today, she was walking with a cane with her husband at her side. I know her name to say hello, but not much more than that. In the past we might have spoken about house and neighborhood stuff, nothing personal. I am retired now and could help her out with transportation or whatever. But my fear of saying something really dumb (having had bc, doesn't exempt you from saying dumb things, esp if you have a tiny foot and very big mouth!!) is keeping me from saying/offering anything.
Your thoughts?
Julie E
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Hi SandyAust, Years ago when I had to put a username on a site I couldn't think of one so used their "help with a username" link. It asked me my favourite colour and a name everyone calls me. There you go...Mumorange, and I have used it ever since. The fact you know the town of Orange and that your user name has Aust in it...I am assuming you are in Australia?
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jelson - just say "is there anything I can help you with?" that's all, I'm sure she is yearning for someone to reach out to her and you sound like you could really offer her support and service. Don't wait another minute. Just my opinion, but we've all been there and it sounds like she is really suffering and her husband could use a break. Hugs.
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You know, I'm pretty forgiving when people say dumb things because I have certainly said things I thought about later and cringed. Unless they are really mean spirited I can let most things go, I have had the mean spirited so I do know the difference. However, to Jelson, not knowing what best to say. I will say If someone is in the same boat or close to some one even if what they say doesn't come out completely how they intended I'd still like to hear from them. At least I know they can relate on some level of understanding. My two sisters who have always been healthy, strong and happy with their lives and very lucky - well, they have no clue to my struggles in life since the day I was born. but resent the attention I got cause I wasn't "healthy, I have less patience with them. I would certainly change places with them for their health in a heartbeat.
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thanks for the encouragement Stanzie and bobcat.
I will report back
Julie E
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Hi mumorange,
Yes "I come from the land down under". Brisbane not Orange lol. I read this is your second round with BC that sucks.
I don't know why I can't wear the pink ribbons. I do mention if appropriate my previous diagnosis but I just can't seem to pin it on my chest. Not sure why.
HI Bon I agree with what you are saying about the pink creating awareness and putting some money towards research. I think the reason some people hate the pink is all the rah, rah, rah we all survived message that seems to go with it. People seem to now think that breast cancer is pretty and pink and quite frankly no big deal anymore. The fact is that breast cancer, along with melanoma, is one of the worst cancers for coming back after the supposed cure at five years. You can move on, put it behind you, but unfortunately for me, and many others, it is always lurking their in the background. Why because there is no cure and this disease can and does recur even many years later. We need a cure, not a big party with uplifting stories, champagne and pink ribbons. This is why the "graveyards" are there. Not to be in poor taste but to honour those who lost the battle, those with stage 4 who are still fighting it (and totally entitled to have their voices heard without it being called poor taste as suggested by another above).
I buy the ribbons to fund the research, I just don't pin it on my chest. Breast cancer is not pretty and it is not pink.
Take care,
Sandy
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I don't think anyone is saying there was a problem honouring "the fallen" but to look like a graveyard setting was a bit confronting for someone in the middle of it....I would feel the same ( but then I wouldn't be there because I can't face it at all!). I am in Brisbane too. Western Suburbs.
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Sandy...I understand not wearing the ribbons and not mentioning your breast cancer status unless 'appropriate', I am still working and almost no one in town knows that I have breast cancer and am still in treatment. The only people who know are those who have to know, And yes, you are right that people seem to think that once you've gone through breast cancer hell, you're cured. That's another important reason to support the research and all the breast cancer awareness hoopla. They call it "Race for the Cure'. That's a huge opportunity to educate others that it is treatable but, as yet, not curable. Perhaps that is one message they should stress in their promos..."We can treat it but we can't cure it ...YET!"
And on a different note, this past week my BS, MO and DO all told me to cut down my activities and rest. They said I was pushing myself too much and needed to cut things out of my schedule. That's difficult because right now I don't look ill so no one treats me as if I am ill. They think I'm just fine. And the few who know about the bc dx think that the rads tx is nothing big like chemo was. So I'll just tell whomever that I have to rest...doctor's orders. You know, I heard of a couple of tx centers where they make you rest in a darkened room for 30 minutes after tx as a mandatory part of your appointment. That might not be such a bad idea.
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I have tried so hard to keep it quiet in this ridiculous little community I live in. You would think it was a country town and not a large suburb in the city! Really disappointed that many of my friends ( who know my wish to be private) have been telling me " well I told them because they should know", " everyone knows anyway so what's the problem?"...I just feel so on show! I am pretty out there but not with something like this. The only way I can feel strong and brave is to feel I have some sort of control over something and right now I can't even control my information! Bon, good for you being able to keep it under wraps. I wish my nearest could have done that for me. I know somewhere deep down you are getting strength from knowing that not only are you getting this thing nailed but you are doing it with the least amount of fuss. You do need to find that darkened room ( somewhere) and slow down just a little though!
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mumorange...I tried to keep it a bit quiet about my dx because I am still working and don't want anyone to use my misfortune to their advantage by telling clients that I am ill and can't work. Of course I can work...but just with a modified schedule. And I've kept up, still working with clients between tx schedules. This is a small town and I'm in a highly competitive business, so I just felt that the less people who knew here, the better off I'd be. of course, I couldn't stop my Dad from blurting it out to his friends and neighbors, but the poor guy has been trying to take care of my Mom during her extended illness, so my cancer gives him something to mutter about besides Mom's multiple issues. Most of my friends here, many of them competitors, have kept it to themselves, I prefer that, too, because I didn't want to be a poster child for bc. Not yet, probably not ever. I'm not ready to share all this with strangers, except for all of you who have become confidants. I can get on these boards and tell most anything, much of it that I will not say to friends or family. I'm so grateful to breastcancer.org.
Going to my darkened room now for a short nap. Ahhhh...sleep. It's often been elusive since my initial dx. Can you say STRESS?
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LOL! I just say "Character is overrated." A little less character and a lot more health goes a long way.
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SandyAust-I don't wear the pink ribbons, or go to the survivor events because I had enough of being identified by my diagnosis by the medical people I got "care" from. I am NOT a diagnosis, and I will not play the "courageous survivor" game. The diagnosis was horrible, the treatment was horrible, my life as I knew it was totally destroyed, and I HAD NO CHOICE. I am not only my remade boobs. I am a nurse, a teacher, a friend, and honorary Auntie, a homeowner, a dog owner, a winemaker, a crocheter, and baker, a gourmet cook, among other things. Many other things. It't time for attention to be paid to those other things.
Mumorange-I hear you when you say you feel like you are on show. I stopped talking about bc at work when everything I did was being looked at as it related to the diagnosis. If I got tired, someone mentioned "everything you've been through." If I did something well, it was "in spite of everything you've been through." Yuck. Fortunately, work is busy and crazy enough that if I don't bring bc up, it stays quiet. And I like it that way!
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Yes MumOrange I get what you are saying, but I know a lot of stage 4 ladies feel they are overlooked, they don't have a voice and that they are breast cancer's unmentionable "dirty little secret". I know of a lady on this board who was asked not to attend a support group anymore because her stage four status was too confronting for those earlier stage ladies in the middle of it. This is not fair. I woud not like to be treated that way if I was stage four. Would you?
All people affected by this disease deserve a voice. Sometimes hearing those voices is uncomfortable but that does not mean they should be silenced. Sorry this is not directed at you, I just know of a lot of ladies who are feeling hurt so I am somewhat impassioned on this topic.
Also the more people who understand that this disease still kills people the better. We don't have a cure and unfortunately the pink party has tended to gloss over that terrible fact. We need for people to know that we need a cure. My own father said to me that he was "...sick of all the attention breast cancer was getting...". My mum also had premenopausal breast cancer so he was recently approached for a donation. He didn't give one. I understand how he feels as mum died three years ago from melanoma, that we originally thought was a recurrence of her breast cancer. I understand his words, but they still hurt. I was 36 at diagnosis with two four-year olds and that is a long time to worry about recurrence.
I am in the western suburbs too. Boy are we having some wet weather! I was in Perth when diagnosed. This is where my husband and I spent many years and where my children were born. I moved to Hobart when I found out my mum was dying (unfortunately she died before we arrived) and then in January last year we moved to Brisbane as my husband need to get back to the mainland for work reasons. We were from Queensland originally (20 yrs ago) so here we are...and I love it!
Take care,
Sandy
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I think everyone should be able to choose how they deal with this. BC is such a personal thing. It is disgraceful to think women in later stages were asked to stay away from a support group. No I would not want to be treated that way, nor do I think my recent post implied that I do. I believe everyone should choose to travel this road as they choose to. This time I had no choice. It is public and it is out there. I didn't want that. That is not to say I believe women in my situation should be ignored but I would like to choose to be ignored by busy bodies. I have just returned from dinner with 3 of my good friend and we ended up in a heated discussion about awareness vs research. We are all on the same boat and all wanting to do the journey our own way...sometimes it is different to our fellow passengers. Noone is right or wrong. Noone should be overlooked or ignored. How would I feel being asked to stay away from a support group? Utterly devastated. No question. But that is if I chose to be there and I likely wouldn't...that doesn't make me wrong but it certainly doesn't make ignorance right either.
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Re reading this I am not sure where you got the impression that I feel confronted by women in worse situations than myself? Nothing could be further from the truth. We need to honour those that have bravely fought yet lost the battle but not in a way that is offensive to those still fighting. I believe a graveyard is offensive and confronting and I make no apologies for that. Surely there are other ways to honour those brave women? With the exception of that comment and a wish to travel this road my way I don't see how you could have arrived at that impression? All this brings about passionate debate and, to be frank, I am really not about that right now. I am about getting through the months ahead and trying to find my way through this ugly place. I had hoped this was a place I could come without my thoughts and feelings being judged as hurtful to others when that was so not my intention. Sorry. I will leave here now.
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Wow, Mumerorange,
I don't know you but I hope you dont feel judged here. I really dont think htat is anyones intention and is not how I read the exchange at all. Please dont lo=eave our commuity, I need every singke one of you right here, Our mutual support will carry us through. No one excluded, no one judged.
In love and peace
Ginger
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After I found out I had breast cancer I chose to have a double masectomy with reconstruction. My SIL said to me "don't you think you are being a bit drastic?" She then don't assume you are going to die from this and think positively. Well at the time I was scared to death and not very positive. I told her my cancer, my decision and I don't need your input.
BTW this is my first post, I am glad I found this place.
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Mumorange, please hang in there - and stay - we all need each other!
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