STEAM ROOM FOR ANGER
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“It does seem like another category altogether when it comes to folks whose anxiety is extreme, who almost seem to want the worst diagnosis, who brush off reasonable advice, etc. I think they might need to talk to a trained counselor as there is more to address there than possible cancer. There is actually a recent thread where a very worried person allowed herself to be talked down by members, who was able to learn, and take a deep breath. It actually surprised me.“
Yes, I have my frustration with those posts as well. After you’ve seen mo’s, ob-gyn’s, dermatologists etc., had biopsies and imaging and are found to not have bc, it is puzzling why one would still believe they have bc. I have sometimes asked myself if they want to have bc! I realize that sometimes a dx is missed but that is very, very rare. I will even confess that one time there was a poster who would not let it go, that is she was sure she had bc despite overwhelming evidence to the contrary. I was tempted to post, “ You really want bc? You can have mine!” I didn’t but I thought it
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I'm one of those members who try to slap some common sense into the freaked out newbies. But now... I feel like I need to apologize for having the audacity to post anywhere in this forum because I was just a lowly stage one. Here's the thing, though: I've had four different stage one cancers. I know that four stage ones don't equal one stage four (except mathematically 🙂) but my psychological hell is just as crappy as anyone's as I wait for number 5 and 6 and 7 to pounce. I'm a member of a few forums for the other cancers, but there isn't the level of support that I've found here, so I've tended to mentally bundle my four when I've posted here. I also have a non-cancer major health issue that will shorten my time considerably, so combining that with those lowly stage ones does occasionally make me a basket case. And I've seen people on here whose stage one cancers resulted in horrible radiation burns or lymphedema or other treatment reactions that seriously and permanently affect their quality of life. I'd hate to think that any of them would be intimidated into not posting anymore because they're "just" stage one.
Edited to add: it's not ever a competition, but none of us knows what another person might be going through beyond the diagnostic information in our signatures.
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Agree Alice. I'm "early stage" and probably cancer will not kill me but my other health issues will. I do remember the fear. When I was diagnosed I do not Facebook, and barely email. Doing the cancer board was a big thing for me even but those younger people are as techie and on computers all the time and it is easy to get obsessive (especially after COVID and people at at home more). They do not know how to "un plug" from their electronic lives it seems which makes their anxiety worse.
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it's my rant and I'll rant if I want to, rant if I want to... 🎶🎶
And nobody can guilt me into stopping or convince me that there isn't a *fundamental* difference between quality of life issues or potential life shortening conditions, and actual death staring you in the face much, much sooner than you expected.
Fwiw, I wouldn't want to have a separate stage 4 steamroom. I figure we should listen to all of us gnash our teeth in anger - no matter what our stage
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agree. We can be mad at doctors and rude people and all kinds of stuff. We can all be nice here because face it, we are all NICE people!!!
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"and yes, beesie has the patience of a saint"
Well, that was the best laugh I've had in a while. My DH would no doubt find that even funnier than I do. No, not even close.
What I am is stubborn and stupid. I keep thinking that if I try to explain things differently, maybe I can get through to someone. In truth, most newbies arrive scared and quickly calm down after they read one or two posts that explain that things are likely not as dire as they think. But the ones who don't calm down.... and the ones with extreme anxiety like Shetland described - I can't deal with them either. I usually walk away once I realize that this is the mindset of the person I'm responding too. And there are times when I read a post, see that there's been no response, know what I could say, but think, "No, I just can't do it right now." I'm early stage and I sometimes feel the need to walk away, so I completely understand why someone who is Stage IV would get angry at some of the hysterics. I look at the kind and thoughtful responses from Stage IV women, especially to those who have a call-back or biopsy, or those who are newly diagnosed with an early stage diagnosis, and I wonder how you do it.
When I was relatively new on the site, I read something very wise from someone who'd been around here much longer than me. I always try to remember this whenever I'm posting to a newbie: "The worst thing that ever happened to someone is the worst thing that's ever happened to them". Their worst might seem like a walk in the park to someone else, but if it's the worst thing that's ever happened to them, then for them it's pretty awful. Usually that works for me, but not always. That's when I walk away.
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Well said. So funny what you said about your spouse! My DH always says he wishes he was perfect like I was and I just tell him I do too and we'd have a lot less trouble around here!
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Good quote, Beesie! I think many of us have had someone say, "I shouldn't complain compared to what you're going through." Hey, if someone has a hangnail that's infected and sore, then it's infected and sore. Whatever I'm "going through" doesn't diminish someone else's pain. Fear is fear and pain is pain. That being said, many of us have advised the newbies not to borrow trouble and stop consulting Dr. Google. Good advice, I say!
BTW, I do often scroll up so that I can "see what Beesie said".
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Well, I'll just say I am glad I am not alone in some of these thoughts. That being said, I usually don't respond to someone in diagnosis or potential mets posting unless its something specific I know about (back pain) and it looks as though they had an inkling or are down the diagnostic path already. Otherwise I figure I am just renting mental space to the anguish of others for issues I know nothing about OR scaring them for no reason when everyone has different situations/healthcare/physical chemistry.
Beesie makes some good points - sometimes I pop into the hormone thread and read about the "just Stage I" ladies getting walloped with letrozole side effects or menopause symptoms and I've had no problems. Death may be staring me in the face, but taking 10 years of pills hoping the aches, pains,sweating,and depression are worth it so the cancer doesn't come back is its own kind of hell. I would never tell one of those ladies to suck it up, it could be worse, etc.
But the ones who keep digging and digging and digging for a reason or a sign of cancer or whatever - that I don't get. Or the incessant questions about IBC.
Finally, I wouldn't want a Stage IV steam room - I think that could get too echo chambery.
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Good thoughts Sondra. I had the attitude that SE from the 10 years of pills and bone loss was better than letting it take over my whole body no matter what. Maybe because of all we had been through already in our lives and our doctors we were working with and how they approached things.
It does not mean the fear is ever gone (especially since I still have a non-cancer side with issues already) but I know they are watching me at least.
And this forum with all stages in it has allowed some of us who are not Stage IV and are respectful and stay off those to get to know some of you amazing people a little bit too and help encourage you along your way too.
Keep the safe everyone!!
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If you could just "un"know what you know!!!! I applaud you all for helping me and the new comers that come. When I first came I was just reading and I thought, "OMG, what a bunch of cry babies" but then kept reading and found so much good info here, I signed up. I was passed surgery starting radiation at that point. So, when I do try and help I try to stick with what I know, or just say good luck, best wishes and move on.
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Perspective. For those who are newly diagnosed with DCIS or early stage invasive cancer (the two areas I generally stick to, along with the "Not Diagnosed"), while most everyone starts off scared, what I hope that my posts offer is perspective. No diagnosis of breast cancer is good, and we all have concerns and face fears, but I have never believed that those concerns and fears are the same regardless of diagnosis. Over all the years and the many discussion on this board before the Stage IV forum was changed to be for Stage IV patients only, it always seemed intuitively logical to me that Stage IV should be separate. The issues are different. The concerns are different. Those who are Stage IV can choose to participate throughout the rest of the board but there needs to be a place that is exclusive to Stage IVs. So when I see someone newly diagnosed with an early stage diagnosis who is overwhelmed with fear and so panicked that she doesn't understand that her prognosis is really good, I try to offer up information that provides that perspective.
Having said that, reading this comment "But it gets tiring to read the angst and then you see Beesie posting those charts about how you are practically cured for life with early stage at this point and it really drives home the "otherness" of Stage IV." and some of the other comments here (not picking on anyone; just responding to comments that made me think) I think what we are all realizing through this discussion is we need perspective on both sides. No matter how good the odds, a diagnosis of breast cancer, even DCIS, presents very real risks that we all have to learn to live with. There might only be a 1%-2% risk of a localized recurrence after a MX, but it doesn't take a lot of reading on this board to find dozens of people who have fallen into these small odds. A diagnosis of DCIS is as favorable as it gets, but it can lead to an invasive recurrence which in turn can develop into mets or in rare cases might be metastatic upon diagnosis. There are people in the Stage IV forum now who've had this very experience. And while many of us with early stage invasive cancer are cured for life by our treatments, we always face the risk that we might not be. I think of proudtospin, who passed away recently. She started off with DCIS-Mi, the earliest of early stage invasive cancer, and she developed a metastatic recurrence. And from my own experience I can tell you that a mets scare - one that is real and taken seriously by our doctors - is probably no less scary if you are Stage IA, as I am, or Stage IIIB. Then, as others have said, there is the issue of taking life altering meds that for some people destroy quality of life, when you're not even sure if you need them or how much benefit you're getting.
So there are certainly two sides of the coin. Stage IV is different. Stage IV patients face issues that the rest of us don't. But early stage has it's own crap. I hope that my posts help early stage patients relax a bit about their diagnoses and become less fearful, but I also worry if someone who is early stage thinks she's done and home free after treatment - I've seen too many people who are absolutely devastated when they come back here years later with a recurrence or new primary. And I've seen too many suffer through the treatments that they might not even need.
As for those in the "Not Diagnosed" forum who are so certain that they have breast cancer, even when all the signs (even biopsies, sometimes) point the other way.... honestly, you have no idea how many times I've been tempted to post here voicing my frustrations. It appears that great minds think alike!
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I've been reading the last few posts with interest. I think one of the issues I'm seeing is a matter of comparison. It's sort of a "whose life sucks worst" thinking.
When I was first diagnosed with Stage 1 TNBC IDC with DCIS (Feb 2019) and chose lumpectomy, chemo, radiation, what I knew was that my life suddenly sucked a lot worse than it did a couple of months before. That was an easy comparison. As a dear friend of mine says, "sucks to be you." And it did. There was a lot of suckitude to it.
As I read posts here from a wide range of people, I knew there were a lot of bco members whose treatment plans were much more extensive, and whose QOL and/or survival prospects were worse than mine. In terms of breast cancer, they got the prizes for their illness sucking more than mine did.
And there were a lot of posts from people who "only" had DCIS, or completely benign breast issues, and I wondered what they were so upset about. You can't die from benign disease. But of course even for them, their lives probably sucked a whole lot more on the day they were posting than it had before. For them, at that moment, they may have been at peak suckitude.
I can't know what else is going on in someone's life, either the greatness or the pain. Even if they describe it, I can only guess what their lives feel like to them. If they are suffering from anxiety and have a hard time believing, after many health appointments and attempts here to reassure them they are fine, they are NOT actually fine. Clinical anxiety (which I have experienced) is a very sucky disease all its own. (That said, we can't help them with it, either.)
This is a good forum for ranting. It's the perfect place to rant about this issue, to people who are kind and thoughtful and respectful in how they respond. The only advice I have is, if there are posts you don't want to see for whatever reason, don't look at them. I occasionally clear my browsing data so that I'm not automatically drawn back to posts I've looked at before. It helps keep me from rehashing the same stuff with members whose problems I don't need to take on.
With best regards,
Mia
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I wasn't devastated when I was dxd. I thought I was stage 4 with yhe large red swelling and enormous pain in the breast. I went from stage 2 before sx to stage 3 after sx. My thought is what can I do. I do my best. Do what docs say and see. I may be different but maybe it's because I don't have this big desire to live into old age. So many health issues and financial for so many. I'm 56. I was ready for whatever at 50.
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Who else has had some of the most insensitive remarks made to you about breast cancer? Here are a few things that have been said to me:
"So, are you growing a beard yet?" - my aunt, after I told her I'm on endocrine therapy to reduce my estrogen
"Breasts are not that important. It's all about the butt." - my dad
"You must have gotten breast cancer because you drank too much alcohol. That's the only difference between me and you, and I didn't get breast cancer." - my twin sister
"So, which relative do you have to thank for causing you to get breast cancer?" - my occupational therapist (I have no relatives with breast cancer)
"Upper body strength is not that important for women." - my oncology physical therapist (said when I told her my reconstruction seems to have compromised my upper body strength. I've always been very active and had toned arms before all this.)
"It all sounds like good news to me." - several people, after learning that my cancer is treatable. I've had my breast removed and am going through hell with endocrine therapy. It's not "all good news"!
"Well, it just seems like you've got a good handle on the situation." - my mom, after I asked her why she never asks how I'm doing with the breast cancer treatment and seems to be pretending breast cancer never even happened to me.
I've noticed a theme with people where they want to believe there is a rhyme or reason to breast cancer. They seem really uncomfortable with the idea that breast cancer can strike you at random, and they want for there to be a reason it happened to me. The other theme I've heard that that my situation is not all that bad. People make jokes to break the tension so *they* can feel better about what happened to me.
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Yup, Yup Yup orange. Take your early stage pills and like it!
No one gets it. I still have fear of it coming back. Wrap that up with recent grief and there's no one, not here, not my family, friends, co workers, no one feels the way I do right now. It sucks! When there's happiness and laughter going on around me, I just want to spit. Instead, turn on the facade smile and carry on. I go from hopeless to a little hopeful that 2021, just turning the calendar will help me. Well, that and I think I need a pill. I just want to be numb until then.
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Don't you wish you had a home version of whack-a-mole for those times that people say insensitive and stinging remarks? You could attach a name to each mole as the need exists.
My former rheumatologist told me I was lucky I had "the good type of BC" and when I could finally regain my voice I informed her that there was "no good type of BC". Then she proceeded to tell me about someone she was related to who was dx'd with early stage BC that went on to develop MBC and died. Really??????????? WTF! Did she think this was consoling? Needless to say after seeing her for nearly 10 years, this was my final visit with her. I was crushed by her insensitivity.
Decided right then that if a medical person could be so insensitive then I would not share my dx with those that might also share her sentiments. So it was a very close circle of those I trusted that know of my dx. I have 3 brothers, but only shared with 1 and do not regret that at all. Never told my mother either because she could sometimes be cruel and did not want to provide the ammunition for another of her personal attacks. So she went to her grave never knowing.
So though we seek empathy, sometimes those we entrust with our trust, are not trustworthy. I can't even say I think they are considerate of our feelings, they are clueless or trivialize what they cannot understand. I do not regret keeping this close to my vest.
No matter what anyone says, there is no "cure" and to date all I have survived is the treatment and that is not without taking its toll as well. I feel 100 on many days, the SE's are ongoing, can't lose a lb to save my life (yet, have MD's telling me I need to lose weight like I am blind or stupid?), hair loss is so much fun, and the destruction to my bones and tendons is yet to be determined if it will be reversible once I stop the AI's. Here's hoping because right now this just sucks.
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Love that whack a mole! LOL!! That would help!!
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Doing a drive by, hope everyone is well. I feel like I have a cold so decided to work from home today. Tired of being paranoid with covid cases spiking nearly everywhere. I go from the feeling out of control and wanting to just feel safe, to then feeling ok. What a crazy train. I know it's the steam room, but I'm actually having a good day. First one in awhile. Have a great weekend.
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ctm, here's to a good day and may there be many more to follow!
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Has anyone else found a lot of negativity from their doctors since Covid made its unwelcome appearance? I saw my cardiac doc in June, and he went from mildly reassuring and informational at the pre-Covid appointment to full of dire predictions and descriptions of the awful things I won't be able to avoid at some point (it's an irreversible condition that can only be monitored for now, until I either die suddenly or have an iffy major surgery) at the June appointment. I left that appointment feeling stunned and depressed, and it's been hanging over my head since. Yesterday I saw my MO, and when I saw her in January, she'd seemed accepting of my decision to not take anymore Tamoxifen (decision was based on a research paper I'd read about it negatively affecting patients with fatty liver, which I have). Yesterday it was one long lecture about all the horrible things that could happen to me without taking it, even though I had a low stage and grade cancer. And she switched me to 6-month follow-ups instead of 3 or 4 since I'm not taking the damn pill. So, is it Covid fatigue, or have they become jerks, or am I the patient they've written off as not worth bothering with? I'm almost afraid to see my PCP and urologist next month.
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Alice, Re health care workers, Ed Yong has a piece in The Atlantic today. Excerpts from his twitter:
"I wrote about what health-care workers are going through, how exhausted & scared they are, and what this 3rd pandemic surge is doing to them. It's not like the first 2. It's worse. How much slack is left in the system? Iowa nurse: "There is none" "
"You've seen the huge numbers. Here's what they can mean. 36-hour shifts ; Docs on standby in case a colleague and their substitute AND their substitute's substitute get sick ; "We're all running on fear" ; "There's only so many bags you can zip"
https://www.theatlantic.com/health/archive/2020/11...
What I'm hearing on medtwitter & nursetwitter is that everyone, now matter where they work, has been overworked. Almost all hospitals have built contingency plans based on getting GPs, specialists, community clinic staff BACK into hospital wards if necessary. People are retraining to go into acute care in crash courses. There's an ICU online crash course for GPs and nurses who haven't worked that setting in a long time (or ever). It's extremely stressful on everyone as their peers are being burned out, staff is getting sick and who will look after people when the medics are sick?? Once a certain level of ICU beds are full, there's no room to treat car crash victims, people with heart attacks etc. I keep hearing people discussing 'trolley car' cases like if you have 1 icu bed and these 3 pts, who do you give the bed to? "A woman with two children is bleeding to death from complications of child birth, a young man has crashed his car and crushed his chest, and and ICU nurse can no longer breathe on her own. Who do you choose?" and who should make that decision? And how will that person feel when they make that decision???
In Belgium 25% of medical staff has covid and is being asked to continue working even with symptoms because nobody can take their place. I think health care workers are looking at what's happening around them & they know it's bad and getting worse & so everyone is very very stressed.
It's all making me mad because there are areas (Australia, New Zealand, Vietnam, South Korea...) where they've gotten a grip on it but the rest of us are botching it badly....
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Two rants.
First, why why why do I get ads for Ibrance in IG, FB, basically anywhere that has ads? I was dx'd w/ a stage 1 BC, so just STOP with the Ibrance ads.
Second, my foot fracture is a non union fracture. I have to see a specialist for next steps which may include surgery. And of course there's always that teeny tiny possibility that I would be the one person to get bone mets in my foot. Almost certainly NOT but it's still a number above zero.
And then I see those damn Ibrance ads.
GRRRRRRRRRRRRRRRRRRR.
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I do online surveys. One I said bc stage 3. The next question was name some stage 4 meds ads I see on tv. All I could think of was Ibrance. I mean why is the question about a mets med when I entered I'm not. Weird.
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Good article moth, seeing it from health care workers perspective. I am sure they are exhausted. Wow.
Alice, I wouldn't want to think any of your docs are jerks, maybe stressed, and as I always try to remember is age. As we get older its inevitable something is going to happen. We really have no choice of what that something is going to be. You of all people have already been through it. I know you'll keep going to all of your follow ups and just take what they say and try to remember we're in a not so normal place at the moment, and hopefully we'll make it through the next 6 months.
Strangely, I received a call from my primary's office and made an appt. Then, I received a letter that I'm due for CT lung scan in Dec. but I am holding out on that one since I'm done with claims for 2020. I just sent out $600. check for husbands ambulance ride back in May. Had one bill ambulance was covered but 2nd one was for a paramedic assist which insurance only paid 200 of 800. Another check for co pays from the hospital. I really hope that's the last of it. Waiting for new or renewed insurance plan and I see the MO in Jan. If he writes a new order for the lung screening then I'll go. Of course the world could end by then, so still trying to stay in the present and not look too far ahead.
Hang in there. Let us know how you make out next month.
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My coworker across the aisle keeps coughing. You're not even supposed to be in the building if you're coughing. He thinks it's just allergies.
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Thanks for the responses. I've been sort of protected from this year since I don't work, but I stress over my husband's job. He's part of a skeleton crew and only working 3 days a week, but every day he hears of people in his building who have Covid. I go nuts if he even clears his throat. Same with the adult son in our basement. He was off for the spring and most of the summer, but now he's back in a public library and it's hard not to think about it.
I think part of my problem with doctors is not being able to see whole faces. Both the doctors I saw have very flat voices, which makes anything sound more negative. My next two doctors have lively voices, so that should help. I hope. I know medical workers are extra stressed, and in our area it's crazy. All the anti-mask dimwits who got it in rural Missouri are being shipped to hospitals in St. Louis and Kansas City because the small-town hospitals are full. A friend of mine who had breast cancer the same year I did now needs MOHS surgery for a skin cancer. Although it's a low-grade one like I've had in the past, it still needs to be done. But she's cancelling because the facility is in one of the large hospitals that's packed to the gills with Covid cases. I have to have an ultrasound in the next few weeks, luckily in an outpatient setting, but if it turns out to be something that needs removal or ongoing treatment, I'd have to make a crappy decision between delaying or being in a Covid-crowded place.
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ctmbsikia GLAD you are having a good day!!! You deserve one if anyone does!!!
I'm tired of COVID and the morons who will do nothing to help stop the spread of it. All our schools are going back to distance learning. We are almost on on total lock down in our city now and they are trying not to so they do not hurt the businesses.
We just stay inside...........................see no one...............for months...............and months................and months.........................
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I’m also really angry about the anti-maskers who are raising Covid rates everywhere. This isn’t comparable to those having to defer a surgery of course but my sister who has stage 4 lung cancer (thankfully no progression beyond lining/pleura in close to 3 years since DX) and her husband were going to drive to my house to have Thanksgiving with me and my husband, we haven’t seen each other except for FaceTime since the Covid crap started trying to be extra careful since it coincided with my diagnosis and then surgery/long recovery. Finally I’m doing ok, Covid rates were going down in NY and we were really excited and looking forward to being together again. But because rates are now on the rise in my area of NY they’re nervous about doing the 2 hour drive in case something happens en route...she was in tears about it when we spoke today...first Thanksgiving we won’t be together in over 20 years, maybe 30. . WTF do the anti-mask people not understand?!?!
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aabigailj, the anti-maskers don't understand a damn thing. My question earlier today on FB was: How many of them get it and their last words are "I wish I hadn't been so stupid."
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