The dumbest things people have said to you/about you
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Mumorange...please do not leave this board. This topic does make for heated discussions but everyones opinion is valid...and personal. This is a place for peaceful and loving expression of our fears, desires, gripes, blessings and all the rest. We all have our 'bad' days and the way we read things or write them may not be as they are really intended. Don't let your or someone else's bad day or bad mood or bad attitude or bad circumstances make you feel that your opinion is any less valid than theirs. Please just take a minute to breathe deeply, give out a long sigh, and tell bc to go to hell. It's the disease we are fighting, not each other. It's the awareness of how bc is still out there, not 'cured', that we are fighting. And honoring those who did not win the battle is part of our fight to finally find a cure and bring information to others about the need for mammograms, self exams and early detection. I really hate that bc awareness month hurts some of us so much when it it meant to be a positive message.
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Bon, Very well said on the subject of "pink".
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NativeMainer -- re wearing the pink ribbon, you put into words exactly how I feel about it! I participated in walks and did a great deal of volunteer work with cancer patients prior to my own diagnosis, but now that I've been a patient, I just don't want to wear the ribbon. It seems as though I'm "advertising" the fact of being a patient which, of course, is not true. Funny, huh? My participation in BC research organizations is done privately through donations now.0
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Sorry everyone. A little overdramatic on my part at the end.
I just didn't think I had said anything that implied I have a problem with anyone and wasn't sure why I was responded to so individually.
I'm ok. Have to get on with it. Chemo number 1 in 48 hours.
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hugs [[[[mumorange]]]] and {{{sandyaust]]] ultimately we're all here for each other, and you won't find a more understanding group of people, who know how difficult it is to hang on, on the emotional roller coaster. more hugs.
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mumorange - I was absolutely terrified of surgery but by the time the day arrived I was able to face the day with a calm heart because I knew I had to do this to stay alive. I hope you are able to find a calm place to face your first chemo and I hope all goes well.
D4hope - we were dx pretty much the same time and I chose bmx with recon too. My surgeon said the same thing as your SIL but added that he thought I was having a knee jerk reaction to my dx! I felt I only had one chance to rid myself of this 'alien' and I wasn't going to be happy with half measures. Needless to say I convinced him otherwise but defending my decision was so hard when I was so emotionally challenged. And why does 'everyone' seem to have an opinion about our treatment when they don't know anything about it? - unbelievable!
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Mumorange
Welcome. I have the first of my Taxol Monday morning. It may help you to know that I was really afraid of my first chemo. Two things that I didn't know that would have helped me immeasurably are. 1.) Chemo itself doesn't hurt. (I had thought it would burn going in.) and 2.) Chemo doesn't kill you.(If you walked in yoi are going to walk back out.)
I post and read on the Starting chemo in August group as well as the Ladies 40 to 60ish. You can find lots of answers and buddies there. This particular board, The Dumbest Things People Have Said About You, can be harsh because we are most often comparing horrid things that ignorant people are saying or believing about us. It is a place to vent and get the stupid out of our lives. We also laugh more than a little bit here too.
Remember hydrate, hydrate before and after your chemo. Drink more than ever before on those days and it will be easier for you. I (embarassing confession here) even found myself needing Poise pads because I couldnt get to the bathroom in time. Good luck
Ginger
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Mum, you are so entitled to drama...this is one place where I can get upset, go on a rant, cry, etc., and everyone totally understands and gives me a big (cyber) hug - the rest of the folks in my life just get nervous and avoid me. I don't really blame them, but I thank God for this site. It has saved my sanity more times than I can count.
I will be praying for you. Cancer sucks so bad. I hate it. You start chemo this week and I start therapy this week (the mental kind - I have been doing PT for the past 4 months for lymphedema).
We will get through this. Hang in there, girl!
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Thanks girls. I have to say reading I have found this site to be fantastic. Fantastic support ( my friends are great but really don't get it) and full of information. I am nowhere near as scared as I was. I am ready to go ( or as ready as I will ever be!)
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Diagnostic imaging scheduling person tried to talk me into getting a mammogram even though I've had bmx. She didn't seem to understand -!? Told her I don't have breast tissue and then she asked me why I'm scheduling an ultrasound if I don't have breast tissue? Ok, maybe I have a little bit of breast tissue and it has a lump in it... why can't they just schedule you for the test your doctor ordered? My online patient profile shows me past-due for a mammogram and I got a reminder by certified mail. Maybe "awareness" should start at the clinic.
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OMG they sent you a reminder! I hope they send me a reminder next year. I will send them a big reminder right back!
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I got a reminder recently that I was due for a mastectomy bra and prothesis fitting--the one person I forgot to tell that I was having a recon this summer was the fitter! But I know what you mean about the reminders when you've made sure your record is up to date. It'll be interesting to see if I get one from my mammo place. I shouldn't since they were inolved in the recon planning and had to send multiple reports and images to Boston, but we'll see!
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MumOrange. I am so sorry perhaps it is me who should leave. I spoke to you, because I thought we were speaking to each other about our observations about things we have seen and heard and how we feel about them. I wasn't having a go at you, I specifically and deliberately made the point that these comments were not directed at you and that I was merely talking about something I feel passionately about. I am also hurt and upset.
I have been on this board for a long time but you will see from my post numbers I hardly post. However I have read a lot. I am often afraid to express my opinion, obviously with very good reason. Unfortunately though on a couple of occasions I have spoken up when some things have been said or done that I think need to be challenged. There was a lady on the young women's board who was concerned about fertility who was effectively driven off the young women's board by someone in their 20s because she was 41. I thought the "must be 40 or under line" was a bit harsh and her desparate need to have a child made it more than appropriate to post in that forum. I was condemned harshly then too but the PM of thanks from the lady driven off made it worthwhile.
Also a little further back in this thread a lady posted a complaint about survivor mentioning at an uplifting talk at the Race for the Cure that she had been diagnosed with mets the day prior to her talk. This lady, very early stage, stated that her mentioning her diagnosis was totally inappropriate because it spoilt the uplifting mood and her desire to celebrate the end of her treatment. For the reasons I have outlined above this makes me very angry. I think about how that lady must have felt and how other later stage ladies and their friends and family would feel reading a comment like that.
On the subject of graveyards, which by the way you didn't raise, another poster did. If it was set up as an actual depressing graveyard with actual tombstones then maybe there is a point. But everyone has different points of view. Or maybe it was a "field of pink ladies" similar to what the BCNA does here in Australia where there is a field of ladies each lady memorialising someone lost to the disease. As someone who has lost close family members I can understand their need for a voice. Tolerance is the key. Maybe also I need to be more tolerant (actually no maybe required). But I hate it when some people are shut out or excluded and rather than sit back sometimes, but rarely, I am brave enough to say what I think and defend someone who I feel needs defending such as the lady on the young womens board, the lady at the Race for Cure who was diagnosed with mets the day before her survivor talk, and the relatives whose dearly loved and sadly lost family member/friend who are represented in a graveyard that is apparently so inappropriate.
This is why there is pink ribbon fatigue, because quite often only the happy uplifting stories are allowed. At least we have progressed from the times when it was inappropriate to even mention breast cancer.
I feel like I am digging a bigger hole here so I think I will go hide under a rock now. I really am not very good at this stuff.
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mumorange and SandyAust--please don't leave this board, either of you! I've read back over the recent posts and I can see where postingings could be taken as responses to an individual, but the overall feeling is one of a general conversation. I've been where both of you are--taking a posting personally when I shouldn't hvae because I was in an emotional place where everything was about me, and had postings taken as an individual response when I meant a general comment on the topic at hand. This disease plays havock with our emotions and misunderstandings happen all too easily. Please, don't leave, either of you. Mumorange admits to be a bit dramatic (happens to all of us, Mum!). SandyAust I'm sorry you've had bad experiences posting on the boards and on this thread, and I hope you can see that most of the time it's the disease's fault, not yours for the responses you get. Both of you have valuable insghts to offer here and I don't want to be deprived of that!
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mum and Sandy, I couldn't say it better--or as well--as Native Mainer. Please stay for all of us as well as yourselves. Don't let a misunderstanding drive you away.
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I got the call for my BRCA1/2 results.
And I'll be danged if it wasn't the PERKIEST little thing on the phone to call me! The conversation went like this..
Her: We've got good news! You do not carry the BRCA1/2 gene!"
Me: "Well that is good news!"
Her: "Yes! We will be noting your file that there is no geneological OR histological reason that you should ever develop Breast Cancer!"
Me: *pause* "But, I still have breast cancer.... "
Her: "YEP! It must have been a FLUKE!"
Did I say she was PERKY???? Good God. Yes, it must have been a "fluke". Lucky ME! Can I have a do-over? I want my "fluke" to be winning the lottery without ever playing...
Did I mention how damned PERKY she was? Honestly, I could do was laugh. I'm not even sure why I laughed. Shock? Dumbfoundedness? Amazement at her stupidity?
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ooo, I hate being a fluke.
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"fluke" - mistake... is like ooops, we mailed you the wrong package.
Where can we return it? I would love to return it.
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Fluke?? I already knew I was a flake - now I'm a fluke?
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LOL. Everytime a medical professional asks me about BRCA and I say I'm negative they give me the "fluke" line. I always tell them I'm not a fluke it's just that the medical world doesn't understand why this is happening and finding a couple of genetic markers does not solve the puzzle... keep trying please, for our daughters.
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LOL.. Fluke...
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1) an accidental advantage; stroke of good luck: He got the job by a fluke.
2) an accident or chance happening
3) accidentally successful stroke, as in billiards.
Yeah... I'm looking at #1 and just not seeing where this "stroke of good luck" is... ?? An "accidental advantage"... hmmmm... I'm just not seeing it. I'm not even really upset or anything... just kind of a surreal acknowledgment that people just don't "get it'. Yanno?
I don't know. I guess that can be a standard response now when people want to know "HOW" I got breast cancer. Everyone seems to have a theory. It's like ... if they can figure out what I did *wrong*, then they can not do that so they don't get it.. I can put their minds at rest now and tell them that I'm just a "fluke".
Eh. Whatever. LOL!
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I found out recently that I am negative for BRCA1 and 2 mutations, so I expect I'll hear the "fluke" line pretty soon. When I do, I'm going to trot out the definintion of "Fluke" and ask how this was advantageous or accidentally successful and see what they say!
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Actually it is a stroke of good luck not to be BRCA+. You have not only a higher risk of BC but also ovarian cancer and maybe colon too if you test +.
Getting back to the dumbest things. I was reading about SE on the Herceptin site. It says to call your doctor immediately if you have any of the following… "loss of consciousness."
I'm still cracking up over that one.0 -
That reminds me of the warnings on sleeping pills that they may cause drowsiness!
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Anne068...I'm sorry that the perky girl who gave you your BRAC test results was so ill informed as to how to deal with patients. I cannot imagine that whomever she works for would have approved of her 'delivery'. My suggestion is that she should be reported, unless of course she is the docs wife or is directly involved in giving you any tx or doing billing of any sort. Those are the dangerous ones. Not just stupid, but powerful, too. Anne, if you don't tell her supervisor about her crass way of dealing with the results and her total misunderstanding of how a cancer patient might feel, she will keep doing this to others. I know it's not your job to save the world, but I sure hate to think that this girl can continue to upset other women and that she is drawing a salary when there is such a job shortage and plenty of people out there who could do lots better.0
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I had to go to the next town an hour's drive away, sit down and be given my BRCA results. Instead of "you don't have the gene" I was told it was "indefinite negative". That is to say that the sample they tested showed no sign of the two genes identified thus far - more genes could be identified and maybe, possibly a different sample could have showed something else.
It reminded me of my daughter's pregnancy ultrasound where she was told there was "no evidence it is a boy". Indeed, the baby was a girl. I hope my indefinite negative means there is nothing to pass on to that gorgeous baby girl. I'll take being a fluke instead.
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SandyAust...let's just let it go. No one is going anywhere not you and not me. It was clearly a misunderstanding and I have no wish nor desire to continue it. We are all going through exceptional things and need to be able to climb over this kind of stuff. Besides, I don't want to be looking over my shoulder when I am having a coffee at Indro thinking you might be coming up behind me!! Let's get on with the big stuff. xx
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I guess if there's a group of older women here who call themselves a 'pod' as in a pod of whales, I suppose some of the members could also be known as 'flukes,' as in whale tails.
This is getting complicated.
Sheila.
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Back to the dumbist things:
"You need a biopsy, call the office"
Yes that was the message left on my cell phone 1 week after my mammogram/ultra sound by some office staff person.My actually gyn never even knew I went for a biopsy because some other physician whom I never met, in her practice looked at the request. My (former) gyno found out when I called and let them know that I had BC and I was leaving the practice. Gyn actually called me (finally) the next day. Boy did I rip her a new one.
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Hope you made it a big one too. I have a friend who can truly understand how you feel. This is such a small town that until recently we had only one DR. [most of go out of town for care]. She went in to check out a suspected thyroid problem. When the test results came in the receptionist--who was the DR's wife--called to say she needed to see the DR immediately because she had cancer. The woman had read the report and had interpreted "abnormality" as cancer. Turned out to be simple deficiency handled with medication. He was a pretty good DR but the wife drove away so many patients he had to close the practice. He was blind where she was concerned.
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