Stupid comments ....
Comments
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Well said runor......
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ready2bedone - sorry for the late reply . I agree; I think that I should have a conversation with my friend just so that she has a better understanding of where I am coming from. She has been a wonderful friend through this whole unexpected journey and I don't want her to feel as if I'm criticizing her so I'm going to have to choose my words wisely!!
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Solfeo, I think you are right. The passage of time eases the rough edges. Sometimes I think that's a bad thing. I don't want to ever be as blindsided as I was the first time. I have pretty much zero risk factors for getting cancer and yet here I am!
Oddly, when someone tells me they were shocked to hear their Grandfather dropped dead pruning the roses my thought now is, lucky bastard. I want to LIVE and not dwell in this thick soup of agony. To do that, I have to accept death. Plainly, bravely, clearly. Obviously a quick death would be easier for me, but maybe having time to say goodbye and get my affairs in order isn't a bad thing either.
I don't know. I really don't know. I just know that nothing is the same. And now I am going to turn on the stereo and dance like a fool because I am stuck in the 80s and it brings me joy. For a moment anyway.
Edited to add, Bohemian Rhapsody by Queen, HELL YEAH!
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I love "cancer contestant"!
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Runor- love the “cancer contestant"! I feel like I am slowly making sense of this whole mess. I am waiting for just one day when my mind does not wander towards breast cancer. In May I will have my first screening (mri I believe) post treatment so when I get past that maybe I can relax a little more and let go of this constant thinking about it
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Just my 2 cents worth but it does get better. At least it is for me. I've found that the more I take care of myself, the less I worry about recurrence. It never leaves and as Runor so eloquently put it...every ache and pain makes me worry the Angel of Death is also swooping in on me. ( I do so love the way you put things, Runor!). But you eventually learn to balance the panic with reasoning. And best of all, you can come here to ask questions, get advice or just be heard. And for me, as silly as it may sound, and like Solfeo talked about, I've managed to find my silver lining in all this. I'm much healthier now than I was before cancer. I've learned a lot about my own body. I've learned to open up and let others in. I've learned to ask for help. And, number one silver lining is I've learned to say NO. I used to spend so much time worrying about everyone else, whether it was if they needed me or if they liked me or whatever. Now I like to say Cancer broke my give-a-shitter and I have no plans to get it fixed. I look in the mirror and see this somewhat lopsided woman with one real boob and one fake boob, 15 pounds overweight (ok...maybe 20) who no longer has all my "lady bits" (thank you Tamoxifen!) and now that I'm 1 month off my 5 years on T, suddenly find myself with waaaay more acne (no one told me about this one!) and realize as I'm standing there that I love that woman more than I ever did in her previous 53 years. And it makes me happy. And I look around at my friends, some of whom just disappeared during my BC years, and realize the ones left standing love me just as much which I don't think I realized before all this. And I know that my DH who's been with me for 20+ years plans to be with me for another 40+ years no matter what I look like. And you know what? That's a pretty amazing thing to know deep in your heart. It helps you get through the mind f**k of cancer and say "Well, if it comes back, it comes back. I've fought it before and I'll fight it again." And you just sigh, smile and move on. Life is friggin' amazing. Don't waste it worrying if you can.
Runor and Solfeo---y'all speak to my heart. You should write books!
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The edges do soften with time. I tried to look "normal" on the outside as far as recon. It was several years and surgeries- ultimately my body rejected the implants. I made peace with that and had them removed. Pain and function improved. That phrase of "everything happens for a reason..." Not sure I agree. I can't change what happened. There is no rewind to get back my breasts, body or pre-cancer life, but I can use what I've learned (the hard way) to help others who face similar situations.
We belong to a club no one wants to join. The experience and fear stays with you because cancer is an unfair sneaky rat bastard. Makes me think of Hotel California: "Next thing I remember-I was running for the door. Had to find the passage back to the place I was before. Relax, said the night man. We are programmed to receive. You can check out anytime you like, but you can never leave...."
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Lala1, CapeCodGirl, Solfeo, yes, yes and again I say yes!
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I have this running through my head.
Announcer voice very much like Bob Barker, (Boob Barker?)
"Runor, come on down, you're the next contestant on The Price is Fright."
I stumble in looking all googly eyed and wonky, holding my boob, which has a wire sticking out of it. Bob Barker continues.
"This game on THE PRICE IS FRIGHT is called the Pathology Pyramid. This little man will climb a pyramid and as he goes up he will pass tumour stage, grade, size, hormonal status and node involvement. You hit the buzzer when you think he's gone high enough and we'll see if your treatment plan matches where the pyramid climber has stopped!" Then Bob smiles bizarrely and I think about ripping the little spring loaded climbing dummy out of his little game show prop and bashing Bob Barker over the head with it and running for my life.
(I think I need a good stiff drink right about now. I seem to be riled up tonight!)
I am a cancer contestant on The Price is Fright. I feel this is indeed a good way to describe it. Not survivor, contestant. Not sure how that's going to look in the coming years. The more I hear it the more I think it's the right word for me. KSusan I have to agree, I think this is a good one!
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Runor--just beautiful!
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Runor---I'd hate to think what you'd get if you won the showcase!!
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Really? People have no clue what kind of BC they have and what treatment they’re having/had? Or can’t remember? I cannot even fathom it. I had surgery, chemo & rads at age 13 (32 years ago) for a different kind of cancer and can tell you exactly what procedures were done, the 2 chemo protocols I had, and the rads schedule and field. It blows my mind that someone wouldn’t remember or wouldn’t ask/want to know the game plan to beat this monster. To each his own I guess
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Some people have been acculturated to trust and not question their doctors. Some pull back from engaging with things that scare them. Some are overwhelmed with details and don't take in the specifics, or are too nervous in a medical setting to track. Others may have known at one point but got snowed under with information, lost the information to chemo brain or immediate menopause, or didn't think the info was important enough to hold on to.
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You ladies are all my anchor in this . I so appreciate all your perspectives. It gives me a sense of calm, knowing that although I will do all I can to stay healthy, there are no guarantees. And while I am doing this I will carry on appreciating all the things that are good in my life. No wasting time on things I cannot control.
So a big thank you to all of you.
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I'm one of those who researches to a fault. One of my docs actually calls me Google Girl! My best friend was diagnosed 2 years ago and was the opposite of me. Refused to tell anyone (I actually played the cancer card on one occasion....and didn't feel guilty!). I told anyone that would listen and some who wouldn't. She didn't want to know anything about any of it. I actually didd what I did for me....researched her type, joined the threads that related to her and would email her things people said or articles I read where I would cut and paste only the positive news. I'm pretty sure otherwise she would have fallen apart. Then about a month ago she calls and tells me she's been having lower back pain, (which she's had before when she does too much gardening and she's been diagnosed with arthritic changes in her spine in 2 spots), and she went to see her GP who ran some tests. Two days later she's at her MO's office and he says he has the results for her and proceeds to tell her that her cancer has metastasized to her back! He actually tells her that he's not a radiologist but that's what it looks like to him but he'll get the radiologist to read it and get back to her. Needless to say she calls me freaking out and I tell her that she's just finished chemo with PCR no less 4 months earlier and there's no way period. While we're talking her doc calls so when she calls back....yep, you guessed it, he was mistaken. It was her arthritis. I told her I was coming there and going to punch him in the face. She said she was just so happy it wasn't metastatic that she wasn't even mad! And then she said, "now I really don't want to know anything. I'm just going to quit going to my doctor unless it's an emergency!" Makes me crazy that she chooses the head-in-the-sand method but to each their own!
I've been having a nagging pain in my shoulder for a few months which started when I started doing a specific weight routine and then took up swimming. Pretty sure it's bursitis or tendonitis but I call my friend all the time telling her I'm convinced I have shoulder cancer. Pretty sure she'd like to knock me in the head about that so I guess we're even!
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I had to research for my own sense of control in this madness. And I still feel I need to because I guess I don't completely trust anyone to make decisions for me. Even brilliant doctors! I just sent my PCP and gyno an article about ILC. I'm sure they love me.
But to each, his own, right?
For instance, my mother was diagnosed 10 years ago with TN. She read a little (which was of course pretty scary), so she stopped. She did what the docs told her to do completely, even though she kinda wanted -- and still somewhat wishes she had done -- a BMX. Except for exercise (which she was great with before), she reads nothing about new treatments, recurrence, supplements, diet, clinical trials, etc. And she's 10 years out without any issues. (She is in the "quiet generation" though, so this could be cultural.) Maybe this method is better! LOL
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I received my Oncotype score today, and it was good news with a score of 13. When I shared the news with my best friend -- that I will not need chemo -- her reply was, "That's good...it's not such a big deal then!" I know she probably just picked a poor choice of words, but it still stings. I will always be worried about recurrence or distant metastasis, and I still have to go through 7 weeks of radiation treatment, and be on Tamoxifen for the next 5-10 years. That feels like a big deal!
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People who haven’t been in our shoes just don’t get it. I had someone tell me that I had the “easy” cancer. I’ll admit - my road was easier than that others have had to travel. I didn’t have to have chemo but I did have 33 radiation treatments. And I’m taking anastrozole. And I have that dark cloud hanging over my head. So, yes. - it IS a big deal.
Congratulations on your Oncotype score, Opera Mom. Best of luck with your radiation - other than my skin getting red, I sailed through the seven weeks fairly easily. The extreme fatigue was the worse side effect. When my husband said, “oh, so you’re a little tired,” I gritted my teeth and explained that I had never been so exhausted in my life. But that goes away when the treatments end.
I’m glad you found this forum, Opera Mom. There are some very wise women here!
MJ
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Okay, well, call me uneducated, naive, uninformed, or any other epithet you can think of, but I am one of the *gasp!* 34%. Its true! I do not worry overmuch about recurrance. My take on it is this: I will do reasonable things to keep myself healthy. I will strive to live in a positive manner, be an asset to my family, and face changes as they come. I absolutely REFUSE to waste my life worrying about all the things that could happen or the past decisions I have made. I made my decisions with the best information and resources I had at the time. If the cancer comes back, well, then it does. I will be mad and sad, but i will deal with it then. Not now.
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Lala1, if some doctor would have said mets, oh wait, sorry, not mets after all - I would have been ballistic with rage. When you go punch that doc, I will go with you!
Tappermom, yes, this is a big deal. There is no good kind of cancer. I am sorry you've had to endure the blabbering inanity of people. I have tried to develop tolerance for those who want me to brush this off and get on with life as if nothing happened. I too want to brush this off and get on with life, only I will never be able to pretend that nothing happened. Have to find a way to get on with life anyway. Tough call.
I researched until I burned out. Until I realized that all the knowledge in the world wasn't going to change the path I had undertaken. I did want the boob-hanging-down kind of radiation but would have to travel thousands of miles from home to get it. So you deal with what you have and I had the boob blast kind that gave me a 6 month cough and other problems, like lymphedema. But I did reach a point with the reading and note taking where I was done. Just done. I needed it to not be the main thing I was doing morning, noon and night. Then I started taking tamoxifen and every shred of knowledge or short term memory got sucked right out of my head. Oh the joys....
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Sometimes I wish there was a like button.....
(and every once in a while I feel like we need a dislike button)
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The upside to cancer is that you get a free boob job. Said to me by BCS.
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Mrsmcg---What?! THAT man needs to be punched too! Hope you got a different one!
I read this article today and it made me think of all that we've been discusssing. I think it's a pretty good description for most of us.
https://www.ihadcancer.com/h3-blog/03-02-2018/our-...
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yes, my doctor said idc is the best cancer treatme
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Are you ready for this one? A man said to me "Well nobody dies of Breast Cancer anymore.," What a dolt.
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So a relative from out of town stops by. They know full well what treatment I've had. They say, "Oh I didn't realize you cut your hair" "Um I had cancer" "Yeah but I didn't know you'd cut your hair" "It fell out" "Oh I guess I didn't realize, you poor thing" WTF Are people really so clueless? This is exactly why I don't want to be around anyone except a handful of people. They are beyond stupid and say ridiculous things. It's like they have no idea what having cancer means to your life. They either think you are dying or unaffected. News flash we are all affected in one way or another. Be sensitive and shut your mouth!
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Operamom, I know my chances of dying are much higher with triple negative cancer, but I see nothing "easy" about having one's hormones scrambled for 5 years. 😐
Does the single positive lymph node make you ineligible for the shorter radiation treatment (sometimes called the Canadian protocol)? Compared to chemo, radiation was relatively easy for me although the level of fatigue following treatment was more severe than I expected. I drove myself to my appointments and had no help at home plus I've had severe Fibromyalgia for years. I think that makes me a bit wimpier than your average bear at times. I know some people worked throughout their treatments. Although my lymphedema worsened significantly, my skin held up well over the 16 treatments. I hope yours does as well. Hang in there!
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I know this thread hasn't been active in a while, but I've gotten some chuckles out of it so here's mine...
When I told my sister about my triple negative BC diagnosis, she said, "Well, please don't let them give you chemo. That stuff does horrible things to your body. You know it can kill you!"
Ummmm.....
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GAWarrior, sometimes you have to put these things down to shock. But she's not wrong, that chemo... that's some bad shit!
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GA warrior, my sister said almost the same thing to me when I told her about my diagnosis. She said “whatever you do, don't get chemo, that's what killed my husband". Her husband unfortunately had brain and lung cancer...I'm pretty certain it was the cancer and not the chemo. Sigh. I ended up with a low oncotype score and no benefit from chemo, so I got to avoid any more comments like that from her for the moment at least.
Anyway, such strange comments to make...like we will just say “yeah ok you're right I'll just pass on the chemo, thanks for the helpful tip!"
Thanks for sharing, you are not alone!
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