Bonfire of the Goddesses
Comments
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I just want to be the "real me" again..........not the "me" who gets up each day, limps across the room, holding onto the bureau, and the side of the bed, just to get to the bathroom..............I want to go somewher, and dance till I can't stand up anymore............I want to jitterbug, cha cha, waltz, chicken dance, electric slide, and be able to get down on the floor during "Hawaii 5/0............and of course, kneel to Shout and throw the arms up for YMCA....................that is my idea of "fun"................Oh I do get out on the dance floor, but I'm not the "last one to sit down" like I use to be.
I want to go to all my grandchildren's games......take those long car rides to see them play, walk the boardwalk, go in the ocean and really jump around, and walk in the sand for miles without having to stop to rest cause the knees can't handle it anymore.....................bask in the sun, and not say "oh I'm on medicine, I can't be in the sun"......................those are the things we give up when we get hit with this disease....................life is never the same again...............even though we make it through the shock, the biopsies, surgery, rads, chemo (if you got it)............and still say "hey I'm doing ok"............then they put you on the "killer drug", that zaps your hair, your joints, your very soul......................and then for good measure someone decides that isn't enough, so they give you Lymphedema for good measure.
Have I covered it all.................sorry to depress you all, but even with all this "bullshit".........somehow, we all still go on,,,,,,,,,,,,fight the good fight............let everyone "believe" we are doing great, when inside we are crying out............No we're not, we're sad, we're hurting, and someone has taken something very prescious away from us.............the ability to have "true" quality of life"......................but each day we get out of bed, and say........here we are Lord..............ready to face another day.................Please walkl beside us, and hold us up............hugs.
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Amen Ducky! You have said exactly how I feel today and everyday since the BC journey to he!! started. I'm going through it a second time and I feel more of my life is taken away from me. I want this to STOP!
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Ducky, your words say it all---for every person that suffers from a disease that science could find an answer. Your words should be immortalized!
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Sunday we had a girl's night out. We went to this nice place and they had a little band there palying all the songs you mentioned. Everyone got up and danced. I sat at the table and watched with a forced smile on my face. I even tried dancing from my chair. My breast throbbed with pain. I tried to ignore it.
My breast throbs with pain when I'm not doing anything. I am so sick of this. But I manage to drag on. Soon I'll have a BMX. Its going to rob me of more. They are removing the breasts that nursed my babies, my womanhood. Even though I'll be getting immediate reconstruction, they have no sensation.
I'm crying like an idiot right now. No one but us understands what cancer steals. This is crap!!!
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Veggy, sweetie---they are no longer nurturing boobs. I was attached until the moment that I realized they could kill me. AT that moment they became foreign "things". It made it easier to say "Off with Them". I to wanted to remember the past, but this is the present, you are crying for the past, not these present "things" that have made your life hell for the past 3 years of worry and dread. Having them off gives you a shot at the future, keeping them gives you a shot at what? Cry and we all cry with you b/c we have all been there. But we want you here with us. So mourn them and what was, but allow your resolve to seek life---- prevail. Love and hugs sheila
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reposted with permission of Dunes:
An hour ago dunesleeper wrote:
Here is something for you all to pass around to the various groups you belong to:Please join us on Monday, June 25th or Tuesday, June 26th for an important free webinar: Take Back Our Genes: Ending the Patent on Breast Cancer Genes to learn about how one company's control of the "breast cancer genes" creates barriers to research and testing that could endanger your health and compromise the healthcare of hundreds of thousands of women.
In 2009, Breast Cancer Action signed on as a plaintiff in the lawsuit challenging Myriad Genetics' patents on our genes. The lawsuit, filed by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, challenges the legality of the patents that grant Myriad Genetics control over the BRCA1 and BRCA2 (the "breast cancer") genes.
Myriad's monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer. It also limits women's ability to get second opinions when they receive ambiguous test results, which happens disproportionately to women from ethnic minorities, including African-Americans, Hispanics and Asian-Americans.
Breast Cancer Action is the only national breast cancer organization named as a plaintiff in the lawsuit. We are able to take this stand because we have no conflicts of interest: we don't take money from companies that profit from or contribute to cancer, and because our work demands that patients must always come before profits.
The webinar will be presented by BCAction's executive director Karuna Jaggar, Sandra Park, Staff Attorney for the Women's Rights Project at the ACLU and Runi Limary, breast cancer survivor and plaintiff. Topics we'll cover include:
Why BCAction opposes gene patenting and why the issue is important for women
The impact of gene patenting on underserved communities
The current status of the ACLU's lawsuit challenging the legality of patents on human genes
Real stories of women's experiences with gene patenting
How you can get involvedJoin us on Monday June 25th 3pm PDT/6pm EDT or Tuesday June 26th 10am PDT/1pm EDT for this free one-hour webinar to hear the real story about the effects of gene patents on women's health and to join us in opposing corporate control over our bodies, our genes, and our health.
Register for Monday June 25th 3pm Pacific Daylight Time/6pm Eastern Daylight Time: www3.gotomeeting.com/register/...
Register for Tuesday June 26th 10am Pacific Daylight Time/1pm Eastern Daylight Time: www3.gotomeeting.com/register/...
For your convenience, we are offering the webinar at two different times. Click on the links above to register for the time and day that works for you.
Sincerely,
Sahru Keiser
BCAction Program Associate of Education and Mobilization -
I guess maybe I am mourning my breasts, the unknown. I haven't cried like this for over a month. I know the are trying to kill me. I know this is the only right decision, but its not easy. So I will let myself cry. Holding it in isn't good. Thanks for the hugs.
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Ducky - I truly feel for you cuz I have it bad too.....here's my bad
3 herniated lumbar discs w/ severe nerve damage in my legs, herniated disc in my neck, fibromyalgia, hyatal hernia, menieres disease, IBS, aracnoid cysts on my brain (benign), and breast cancer. I know the pain and know it all too well. I too need to hold on, I can't squat, I can't run, I can't even walk a mile without the pain and fatigue. I can't lift or hold my new great nieces and nephews, can't even lift the groceries. The menieres gives me terrible vertigo and I'm puking at least 2-3 times a week from it. OY, calgon take me away...........
Throughout the years I wondered if the powers that be were testing me for some kind of payback for being bad. With all this medical crap I've gone through for years I'm glad that I can actually take it and tell em' "bring it on cuz I'm on the winning side, this is not going to get me down and out, you will have to come up with something more challenging since I beat cancer." So here I wait for the next round of something. Like I said, bring it on..........
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Kingrl---------YOU GO GIRL-------LET ALL THOSE AFFLICTIONS JUST SUCK EGGS---YOU HAVE A GREAT SENSE OF HUMOR AND KINDNESS. UCK EVERYTHING ELSE.
In 1995 my mom went into the hospital b/c of abdominal pain, utimately she had a bug that if nursing and doc's had done everything right she would or should have come out unscathed.-------Nope, she had un-needed surgery b/c a nurse negated her responsibility, then another nurse watched her right into Congestive heart failure>>then the Icu nurses either b/c of lack of technique or contaminated rooms--she left the ICU to a floor room and then the hospital with clostridium difficile---commonly known as c-diff.- Medication for months---Uck'em--she survived another 9 years, but always wore a diaper "Just" in case b/c of the damage caused by c-diff. ------Don't know why I'm writing this right now, but been all over the boards this affternoon------so many ucking errors. I WANT TO SCREAM--SO, MUCH SELFISHNESS BY GOVERNMENT------SUCH WANTON DISREGARD FOR PEOPLE. AND THEY GET PRIMO MEDICAL CARE THAT WE HAVE TO FIGHT FOR. AND THEY SIGN LAWS THAT GIVE AWAY EVERYTHING.----BUT THEY LEAVE WASHINGTON WITH GREAT PENSIONS AND GREAT MEDICAL FOR A FEW YEARS OF WORK------UCK THEM----------INTO THE FIRE, NOTHING SWEET ABOUT IT. LET THE FIRE BURN HIGH.---------UCK THEM IF THEY WANT TO MAKE MY FILE BIGGER BECAUSE OF DISSENT.
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wELL THAT BLEW OFF A BIT OF STEAM. hMMMMMM
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Hugs veggie - I mourned for my breasts, too. I never knew how attached I was until I had to off them. You will get through this. Cry all you need to, it's a process. Hugs again.
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ducky1 - Your words have said it all. Somehow we all manage to get through the days.
Veggy - Cry all you want. You are already mourning a big loss. We are all here for you. (((HUGS)))
SAS - We all need to blow off steam every now and then.
Well ladies, this thread has reached page 100! Never knew this would go on so long. Thanks to every one for coming here and making this happen.
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Holy crap.WTF is goin on here?Everyone is so jumpy.me too.im gonna tell you 2 weeks agon we had an eclipse and monday we had another one.This causes everyones blood chemistry change.Every post is heart wrenching.I wanna cry for all of you including myself.
I too wanna dance.hey i danced competition for 30 yrs.now 1 dance kills me but you think i stop.hell now.ill pay tomorrow.Ducky-sista/friend.sorry to tell you but we are over 70.We made it this far....put a smile on your face and remember the good times.We are in the battle of our lives right now and IT SUKS!!!!!!
Veggy and king===I feel for you.it does get betta,it will get betta,it better get betta!!!!!!
Sas-You sure have a way with words.Thanks for the info.I get emails from them.
HAVE I TOLD YOU LATELY F$*&K bc!!!!!
huggggggs everyone.keep that fire burning.my feet are freezing.K
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My pity party came to an end... for now. I think I tired myself out. Thanks everyone for the hugs. It helps knowing that someone cares.
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I love you ladies.....................thanks for the kind words..........I hope I spoke for all of you................we will bitch, moan, complain, rant, and rave..............but we will survive......................WHY..............because we have the LOVE of each other........................hang in there my friends...............we're gonna make it......................hugs......May our tomorrow, be better then today......................
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ducky - I certainly hope tomorrow is much better than today. Today was crappy. I had a crying spell over something stupid and I have no control over. I know it is good to get the tears out instead of holding them in but still......
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Well based on a belief of the writings of Duneslayer, My taking of her posting with her permission and posting to many threads and to the Mods------it was deleted from each thread. So, into the fire ---a non considration of a different belief.
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ducky, I agree that your words should be immortalized! I would like to add neuropathy (whether chemotherapy or radiation induced) as something that just invades some of our lives and won't be ignored. and cannot be cured or even adequately treated in many instances.
Veggy, sometimes you just need to cry for a long, heart and gut wrenching cry. Sending you gentle lovingkindess - you are a wonderful woman.
SAS Sheila, thanks for the reposting about the genetics patents. This has bothered me for a very long time!
My youngest sister reminds me that "parts is parts, and they'll turn on ya!" - breasts, ovaries, uterus, appendix, teeth, etc. ..... you name it, it can turn on you!!!
Let me invite you all to the gentle warming fire for a bit to share a hug, share love, give a shoulder to cry on, and yes, perchance, to dance wildly into the night!!!!
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Linda - Just give me a second to get my chair and I will join you. I could definitely use a hug today.
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Linda............good heavens..........you talk about neuropathy............never had that until about 5 weeks ago............horrible..........I thought,........am I the only one who is bitching about this..........I said to my daughter the other day when we were down the shore..................if I could replace from my waist down, I would feel good...............I can handle the LE..........its nasty, but it has not made living horrible.......it isn't pretty, but I can deal with it..................but what is it they say...........when your feet hurt........you hurt all over............my legs and feet ache from morning till night.......no let up, and when I walk its even worse..................guess I'm not alone with the neuropathy.............and the Dr.s try to tell you, the meds don't cause it............bullshit..........
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ducky, I have neuropathy too--also in my hands. It has also caused numbness in the soles of my feet and palms of my hands. This has caused balance issues which I went to my PCP about. He diagnosed tamoxifen induced neuropathy, no known effective treatment but sometimes does improve on it's own. At least he gave me an answer and he did provide some practical suggestions for living with the balance problem. He also insisted on getting me a handicap parking permit. I had never been willing to get one, bullheaded fear of "looking old" I guess.
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Ducky & Chabba - I have radiation induced neuropahy in my left toes (bc side) and my left breast. How weird is that? After many tests - bone scan, CT scan, etc. I was sent to a pain specialist. The long and short of this story is that I was put on Nortriptyline and that has helped a lot. I hate it that I am going to have to stay on this drug the rest of my life - GRR!!
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I too have neuropathy. Hey, anyone been lucky, I mean unlucky enough to have a nerve conduction study, or EMG done? Well, I have and it hurts like......well, like, it hurts. I have to have this test done every 2 years but have put it off for the past 4 because I know what to expect. What are they going to tell me that I don't already know about my nerve damage.
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I have a headache today.not a migraine but a steady banging on the sides of my head.
One day i wanna wake up sayin nothing hurts.
yeah right....and pigs fly!!!!!!!!
make room for me at the fire.Im still freezing and its beautiful outside.
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Yeah, New York is sunny and cold too.
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I love this weather....just want this headache to go away without takin any meds!!!!!!
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kingjr66, yes, I've had the EMG/NCV test three times (chronic neuropathy pre-existing, not due to chemo). Yep...OUCHO. Depends on the skill of who does it, too. Some are better than others. This is not something you want an intern practicing on you...eeeks!
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Had the EMG done also, but it ws for something else.............had someone good, like a stinging sensation, but I kept thinking.........Good Lord what must the electric chair feel like.............well I guess you actually don't get to tell anyone, right...............
I am going tomorrow for a complete ultrasound of my arterial system.............from head to toe..........they will be starting at 9:30, and the last will begin at 10:15.........peripherial, carotoid, and somewhere else...........my Cardio is going to do it............it is to see if all this swelling of the legs and feet is an artery problem..............I still say......................screw the tests............its the Femara................which I also blame for the neuropathy..............so here we go again.........................fishing.........oh well........guess I'm gonna be late for BJ's.............
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I got my surgery date this morning... June 27th. Is about 6 weeks from my original date May 15th. I fired my first surgeons. They wouldn't do what I wanted.
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Veggy - Great news. June 27th will be here before you know it.
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