The dumbest things people have said to you/about you
Comments
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Oh, dear, MrsBee, I almost spilled my juice on the keyboard! thank you for the laugh!
Yes, yes, "Foobies Bergeres"!
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Sharon and Susan I can so relate to you both. I have had wonderful support especially from my husband so no complaints there. But now, nearly 4 months out of chemo, 3 weeks after reconstruction, and on tamoxifen, I really feel many of the same things you do. How to feel 'normal' again? the terrible fear of recurrence. Mourning the 'old me', my healthiness, the way I could do things around the house, in the garden, enjoy a long day out or a trip away. I have had bc twice now in 9 years (two different primaries in different breasts) so I now feel especially 'unlucky' in some ways. I am getting on with life and I feel I have a positive attitude overall, but when people look at me and talk to me they only see the happy optimistic face, not the hidden one that is fearful, a bit angry, and sad.
I can only hold onto the belief that things will improve inside my head and heart, with time.
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Flyingduchess-I can see us now-"The Amazing Dancing Amazons" We can charge extra for every scar we display. Or better, charge by the inch of scar! Then we can run a lottery: buy a chance to see if you can identify which boob is the foob while we're dressed, win a ‘booby' prize if you guess correctly! I realized I was healing when I started looking at and playing on a couple of games and humor threads. Welcome to the world of ‘recovering breast cancer survivor'!
MrsBee¬¬--Ambien is known for causing sleepwalking and not remembering what happens during sleepwalking incidents. Eating-as in cleaning out the fridge-is one of the more common forms of sleepwalking Ambien users have experienced. Sexual behavior is another form. When Ambien works, it works well. When Ambien doesn't work it can be frightening. Have you tried melatonin to help with sleep? IT can take a few nights of taking it for it to work, but it has very few side effects and the dose can be tailored to your particular need. Added bonus, some research has shown that melatonin in high doses inhibits breast cancer cells and can actually kill them. Edited to add-just reread your post, so glad you found something that helps you sleep! That's the important thing!
Neece-One of the things that really, really, burns me is the whole "new normal" concept. In my mind there is no such thing as a "new" normal. My life is either normal or it isn't. Since diagnosis, my life has not been normal. Having a cancer diagnosis is, by definition, not normal. I have lost my normal self. I still grieve that loss, and always will. Have I come to some level of acceptance, yes. Do I call it being "normal?" NO WAY. Before bc I would never even consider, let alone talk about, working in a topless coffee shop. That would have been a completely inappropriate topic of conversation. So, I have had to let go of the "normal" me and learn to live with a new and different me, with bc. Things have improved in my head and heart since getting the diagnosis. But I refuse to call this normal. IMHO, the "new normal" concept is a distraction from the fact that, even with millions of $$ raised for research every year, bc (or any other cancer) cannot yet be cured.
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There really ought to be an Awareness calendar that shows different breast reconstructions and NOT, in a flattering way. If someone made all those elderly women look sexy surely they could work with us. Hmmm, is there a photographer out there?
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Okay, this is NOT going to be funny. I am NOT happy about this. In fact, I am REALLY P*SSED OFF. This was not said to me or about me, but it was written in our local (university) student newspaper this past week. Well, I guess it was said about me, and the rest of us here, in an indirect way.
The title of the article was, "Girl's Guide: Women's health risks." The article focused mainly on HPV and cervical cancer, as well as cardiovascular disease. Toward the end was a small section on breast cancer and the importance of breast self-exams. (Never mind what the USPSTF said about that in their recommendations last year...)
The main source of medical information in the article was a woman who (apparently) is the "clinical manager" at the local OB/GYN clinic. She was quoted liberally throughout the piece. I'll refer to her as "Ms. Jones", so she won't be recognized for her stupidity.
The article says this about breast cancer:
"Along with hyper thyroid disease, breast cancer is another health risk for women that is often genetic. Ms. Jones said breast cancer is another disease that can easily be prevented. 'One way to detect it early is to start doing a self-breast exam. ... You'll know your breast so well that you can easily detect an abnormality.' "
"... easily be prevented"? Did I miss the memo? Did I sleep through that lecture? This was clearly one of those nightmares where I arrived too late, and it was already time for the final exam even though I'd never attended class. I flunked. I got breast cancer, even though it "can easily be prevented."
<sigh>
otter
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Otter, does that newsletter have an online edition? I would LOVE to give that woman a piece of my mind, as from a woman who's mammograms didn't show drat for years and suddenly got IIb and how much self breast exam helped in the process of "prevention". Does she even know what "prevention" means? Aparently not.
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Along the same lines, I was disturbed by what Martina Navratalova was quoted as saying when revealing her recent bc diagnosis. Words to the effect - I only have myself to blame, I skipped a few mammos - !! If she actually said it, how stupid!!! Ask anyone here - getting mammos means no bc! Ha!! If only.
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It amazes me the amount of times I have to tell people that mammograms DO NOT PREVENT BREAST CANCER. Self-exams DO NOT PREVENT BREAST CANCER. Early detection DOES NOT PREVENT BREAST CANCER. Early detection is - early DETECTION. You know, detecting, finding.
And none of it is 100%. I had a clear mammo ten months before I found the lump, and then a clear mammo the day it showed on u/s and was biopsied. It was already Stage III.
But people continue to think of it as PREVENTION.
Sigh. You can't fix stupid. Or fantasy, for that matter.
Leah
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I had a clear mammo on the day the Pathologist determined I needed a biopsy, based on an ultrasound. My GYN felt a lump which turned out to be nothing, which is why I had both a mammo and US (during which the tumor that was biopsied was found in another area of the breast).
People confuse detection (of the disease which exists) with prevention (avoiding the disease). This sounds really ignorant coming from a health professional.
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bcincolorado - The comment by your boss reminded me of something stupid my dad said. When I was explaining the sentinal node biopsy and told him they take out your lymph nodes and test them for cancer he asked if they put them back in afterwards. The man has a PhD.
Sue
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Sue!!! That gave me my first laugh of the day
!!!! I've had a rough, hard day where I've cried a LOT!! And your dad's comment/question cracked me up!! Especially a man with a PhD (reminds me of my son....he's so incredibly smart, he's stupid!!)blessings...robin
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IF ONLY it was that simple!! No seromas, no LE.... 20 nodes, all perfectly good, Thank you Doctor, now can you put them back in please. Maybe one day the surgeons will be able to, let's hope it will happen.
Robin, sorry your day has been hard. Thinking of you.
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Otter -- can you write a letter to the editor? Such misinformation is so frightening, especially from a health worker or is a clinical manager even a health worker (i.e., knowledgeable and trained in women's health). Arrrrgh!!!!!!!!!!!!!!
I was able to google the article -- I will leave a comment with Otter's OK to do so. Otherwise, I'll just shake my head in disgust at this article.
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I'm wondering why Wacoal's "Awareness" bras have wires. My PS says underwires are fine but I have heard that they are not good after reconstruction, and I have seen discussions about their safety in general and possible link to bc.
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Elizabeth, go for it!
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Thanks Otter. I could have gone on and on but tried to keep it short. Here's what I posted:
A dear friend told me about this article and I am compelled to comment about the misinformation about breast cancer. Breast cancer is NOT preventable nor is it curable. One hopes to catch it soon but this is not a guarantee that it will not come back. Not all breast cancers present with a lump and can only be found with scans.
I am a 40-something woman living with Stage IV breast cancer. I have lost so many friends to this disease. A disease that affects many women in their 20's and up.
That this misinformation comes from a clinical manager at an obg/gyn clinic is both appalling and fightening. I would have expected better than this.
Edit -- ack -- typos, well, I was shaking while I was typing. And I meant early, not soon. Chemo brain!!
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konakat,
Well said. Perfect in every way. Hit send.
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konakat - Hit send, please. It could not have been said any better.
Edited to add - where do we go to add our comment?
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konakat, you go sista.
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Konakat - never mind. I found it. It is in the Auburn Plainsman. I posted the following comment:
This is an unfortunate article that blames the victim/patient for their illness/disease.
Breast cancer - preventable? If only this were true. Cervical cancer - 100% preventable if you don't have sex with "six million people"? This woman is a credible source???
Telling young women that it is their fault if they contract these diseases because they are "not in tune with their own bodies" is irresponsible and heartless.
Who is this woman to tell the thousands of families who have had wives/mothers/sisters/ daughters who died from these diseases that it was their loved one's fault that they died?
Where is the editor of this "newspaper"? Did anyone actually read this article before it was published? A retraction and apology to every woman who has been touched by these diseases is in order.Here's the address:
http://theplainsman.com/pages/full_story/push?need_to_add=true&content_instance=7076825&id=7076825
Have at it.
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Perfect Cornellalum.
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Sue: LOL!
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Love it, cornell. My DH and I were discussing this earlier. Preventable? Wouldn't we all have liked to have prevented this.
And Sue--would love to know, a PhD in what? Tell me not a science.
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Ok I went and posted too.
"Burdette said breast cancer is another disease that can easily be prevented."
When are they announcing the Nobel prize for Ms. Burdette? I mean, really, for decades the medical community struggles to find a cure for cancer, and this woman comes and cuts to the chase to the point that there is no need for cure, because she has the secret on how to PREVENT it?
No, really, people, you couldn't find anyone better for an article of such a tremendous importance for the life and well-being of young women? You had to pick someone who doesn't even know the difference between "prevention" and "detection"? How did this person manage to become a "clinical manager"? I'm not sure of for how long from now, though, because after such a humongous blooper, it's hard to see a bright career future for her.
I am going right now to put in the entry for Darwin awards for Ms. Burdette."
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How about my 15yr old telling me that I am using "displacement" on him when I was telling him to clean his room for the Umpteenth time! NO, I REALLY need you to clean your room...now everything I say can not be taken at face value? Gesh, I didn't know that is what happens when you are diagnosed for the first week
Kids can be experts after their fist AP Psych class.0 -
That was great Day!!
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Another unfortunate oversight: Along with hyper thyroid disease, breast cancer is another health risk for women that is often genetic.http://theplainsman.com/pages/full_story/push?need_to_add=true&content_instance=7076825&id=7076825
About 5% to 10% of breast cancer cases are thought to be hereditary, resulting directly from gene defects (called mutations) inherited from a parent. http://www.cancer.org/docroot/cri/content/cri_2_4_2x_what_are_the_risk_factors_for_breast_cancer_5.asp
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Ugh. Those slipped by me. Sigh...
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I just had to jump in and post my 2 cents worth. Here's what I posted:Ms Burdette has done a grave disservice to the young women she is supposed to be trying to help by giving totally incorrect information.
Regarding cervical cancer "Burdette said this disease is 100 percent preventable if the right measures are taken." NO disease is 100% preventable. According to the Mayo Clinic "What causes squamous cells or glandular cells to become abnormal and develop into cancer isn't clear. . . However, HPV is a very common virus and most women with HPV never develop cervical cancer. This means other risk factors, such as your genetic makeup, your environment or your lifestyle choices, also determine whether you'll develop cervical cancer." (MayoClinic.com) Note the last sentence, please.
'"It's just a shot," Burdette said. "There are very rare side effects at the sight of injection."' The Food and Drug Administration (FDA) has required the addition of this warning to the official prescribing information: "Because vaccinees may develop syncope, sometimes resulting in falling with injury, observation for 15 minutes after administration is recommended. Syncope, sometimes associated with tonic-clonic
movements and other seizure-like activity, has been reported following vaccination with GARDASIL." "Just a shot," Ms. Burdette?Ms. Burdette's information about the causes and prevention of breast cancer is also incorrect. Less than 20% of all breast cancers are genetic, or caused by an inherited gene mutation. More than 80% of breast cancers are diagnosed in women with no family history of the disease. I don't know anyone who defines "often" as less than 20% of the time.
Ms. Burdette states that breast cancer is "easily prevented." If this is so, then none or very few of the young women she comes in contact with and educates in breast cancer prevention will be diagnosed with the disease in their lifetimes. Do you have statistics to prove this claim, Ms. Burdette? Considering that the rate of breast cancer diagnosis had not diminished to next to nothing over the last few year disproves this claim. Or are you the one person on the planet who knows how to prevent all breast cancers, Ms. Burdette?
As a breast cancer survivor I am appalled at the statements made in this article. I also noticed that Ms. Burdette's title is given, but no clinical credentials. Obviously she is not qualified to be speaking on this topic.
NativeMainer, RN, MSN, Full Time Taculty
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retrievermom - A PhD in education.
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