STEAM ROOM FOR ANGER
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It's time to change the stigma that stage IV cancer patients need to look sick and be given a period of time of their life expectancy. It's totally ridiculous in this day and age!!
I get that a lot in regard to my sister who is Stave IV about how she looks well. What people don't know about cancer is a lot. I whole heartedly admit that I knew ZERO until it happened to me. My sister was diagnosed 6 years before me. She's 10 years in by the way.
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@exbrnxgrl Your contributions to this place have been very helpful. I bet it gets tiring though.
Sorry for the double post, I hit the wrong button!! UGH!!! It's colonoscopy prep day for me and I am none too happy about it. Doing my best to keep on track for a good test BUT I just want a sandwich!!!
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I second Divine in reporting the rude person to the moderators. Why would anyone who did not have breast cancer want to come to this site? As much as I value being able to gain support and knowledge here, given my druthers I would never have developed BC and spared myself all that it entails. So if someone was rude enough to make that comment to me, I would gladly hand them their head. You were far too kind.
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Have I mentioned how wonderful all of you are? Thank you 😘
And now an update. The member has since apologized to me which I appreciate. She was still a bit miffed that I called her out on it saying I should have asked for an explanation but it was a yes/no question (Did you have breast cancer at all?). What’s to explain? I am just going to assume that perhaps her own potential bad news has clouded her thinking and leave it at that. ¡Muchísimas gracias a todos!
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De nada.
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Many people like to fling shit anonymously on the internet and get away with it. Not sure why the member who pm’d you, exbrnxgrl, thought you’d keep quiet. You did her a favor by not disclosing her screen name, but you could have done that.
I’ve never sent anyone on this forum a rude pm. If I have a gripe with someone, it is aired publicly. I’ve reported less than a handful of members to the moderators over the 13+ years I’ve been here. Once, someone was attacking me in numerous posts on a thread which caused me distress. I pm’d the mods for advice. Then I went back to the thread and told everyone that I’d reported the issue to the mods. I think the attacking member was shocked that she’d been reported as many members looked up to her for her medical intelligence. Members still have to be courteous to one a other, regardless of what they bring to the table.1 -
Wow, I guess I've been lucky not to be attacked here. I've had people say things that seem stupid, but I think it's out of ignorance and not meanness.
Hoping everyone has a lovely, peaceful day. I ordered a new little trash can for my used tissues. I didn't like how they were piling up on my desk.
Carol
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Another day, another rant! This time about my mother! I envy anyone who has a good relationship with their mom.
My mom thinks she is a medical expert! I was recently diagnosed as diabetic and saw an endocrinologist. Well the endocrinologist took me off one medication that was not working to curb it and put me on a different one and Ozempic, and put me on the Dexcom monitor. So far two weeks in, no problems. The minute my mother found out what my new doctor did, she started her “do as I say because I am a medical expert” crap. She told me to tell my doctor to put me on the meds she is on for diabetes and to get on the CGM she is using. I told her my insurance won’t pay for the CGM she is on, but will pay for the one I am on and that I am trusting my doctor with my new meds as she is the expert and not me. I don’t see my endo doctor until next month! So now every time my mother calls, like today, she persists on asking if I bullied the doctor to put me on what she takes. I told her I’m not having any issues so far and if I did my doctor told me to tell her asap! My mother blew a fuse over me trusting my doctor over her “advice”. I had to listen to a 20 minute rant about it! I ended up so upset over it, I hung up! I am nearly 50 years old, I think I would know by now who to listen to for medical advice!2 -
Does your mother have any medical training? Just curious…
Yes, at age 50 you should not put up with her treating you like a child. You can reassure her that you love her and you know that she has your best interests at heart, but you will be following your doctors advice since he knows you from a medical perspective. If she persists, you need to tell her that this is stressing you out and stress is very bad for your health. If she still persists, and this is not an option to arrive at lightly, you can go low contact until she can respect your position. If she can’t behave like an adult, at least you can. You are her child, but you are no longer a child.
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I get along with my mom and guess we are the ones in charge of her at this point. She lives by herself in a senior building but we have had to go over and help her a lot with things she can't do herself at this point. She still wants to think there is nothing wrong with me even though she knows I had BC surgery and now have a another thing that will end up killing me probably before cancer does at this point. I just want to keep going to outlive my parents at this point.
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mommyof3, it sounds like you need to create better boundaries with your mother. It’s something I’ve been working on for several years in all my relationships. It was very difficult for me at first. My parents have passed away, but I had issues with siblings. Having boundaries meant I learned to say no to things. I spend less time with them. I am mindful of what I say to them. I don’t need their unsolicited advice. When I see them now, it is more pleasant. “Less is more” in this case.
There are many articles online about putting boundaries in place. But I love to find tips about boundaries on Pinterest, and I pin them to a board so I can review them from time to time. I found that even my good relationships benefitted from having better boundaries.
I used to wait and hope others would change their ways. It’s not going to happen. I finally realized the change needed to come from me. That’s the hard part, haha! But I’m proud of myself for sticking with it. Good boundaries improve my relationships.0 -
I only call her once a week, but if she keeps it up, it will go to once every couple of weeks. She has no formal medical training but she listens to all these supposed “experts” on tv and thinks that qualifies her to tell me how to handle my medical issues. I have gotten to the point at that I just let what she says go in one ear and out the other. It causes too much stress for me and my hubby gets irritated with her trying to push me into listening to her. My endocrinologist is a woman and my hubby sees her as well, if I can’t trust her, I’m in big trouble. I have told my mom many times that I may e her child, but I am well into my adulthood and no longer will tolerate being treated like I am a child, of course, she ignores it.
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I’ll add a bit of humor to the issue of parents and medical advice *.
My father simply couldn’t understand that all cancers are not the same. He was fond of saying, “Cancer is cancer!”. Nothing could convince him otherwise. As a result of this, he spent quite a few years before his passing clipping and sending me articles about new treatments and advances for… prostate cancer, pancreatic cancer, testicular cancer, etc. Yup, he was convinced that the latest advances in treating prostate cancer would sure work on breast cancer because… cancer is cancer!
He was also fairly certain that my sister got cancer, uterine sarcoma, from sitting in the chair of a woman who had also been diagnosed with cancer. He argued that researchers couldn’t prove that that wasn’t a possible cause of cancer, so in fact it might be 🤷🏻♀️.*My apologies to those who’ve been on bco for a while as I’m sure I’ve told this story before.
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exbrnxgrl, that is pretty humorous! It can be rather unbelievable the way some people think, and there is no changing their mind. Though it’s not always easy to do, it sounds like you were able to take it in stride. You probably knew there was no use trying to argue the point. And no, I hadn't heard this story from you before!
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Exbrnxgrl - Sounds very "Dad like" to me. He obviously cared a lot though and was trying to work the problem. Since my dad wasn't an expert, he wanted everyone to simply defer totally to the doctors; no asking them questions or bringing up something you'd heard, etc. ( That was for the rest of us of course, not him.). Very sorry about your sister having the uterine sarcoma. That's what took my mother. They say it's so rare that they just don't know much about it, so no real progress on treatments.
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Thank you three tree. She was dx’ed and passed away about 6 months later. I don’t think my mom ever stopped grieving as my sister was her youngest.
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Every cancer is different and that is what some people do not get who have never had cancer. Some are more advanced and have different treatments no matter what type you have. They are all terrible.
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Hey there.
Newly diagnosed as MBC (literally from lump to stage 4 bye bye Felicia in 6 weeks) and I have a bone to pick. Now, I am sure this is not the first time it has come up (for which my apologies) but I really need to vent, as I am concerned I am perilously close to punching the next person who tells me to "be positive"
Number 1: for me that is in the same area as people who tell other people who are angry to calm down. I mean, realistically, when someone has already combusted that generally does not work well.
Number 2: Why do I have to be singing and dancing? To make you feel comfortable?
Number 3: Why do you assume that I am not positive just because I am not singing and dancing, but trying to come to terms with a pretty scary diagnosis. Toxic positivity is also not healthy. I am not getting ready to lay down and die, but I am trying to manage my expectations and make the plans needed for my family and children (you know, the whole plan for the worst and hope for the best)
Number 4: Why is there only 1 suitable way to deal with this?
Anyway, just really, really needed to get that off my chest.
Along with my aunt/second cousin/this girl I went to school with had the same as you and she is now in remission/still here 20 years later/running a yoga retreat etc. this is the comment I receive most often in the "non helpful" column. I appreciate the good emotion behind it, but honestly the toughest part so far about telling people is needing to manage their feelings by not reacting, so appreciate the chance to share it with people who (at least some hopefully) get it!
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Exbrnxgrl - Oh, your poor mother. I can totally understand why she was never able to get over it. My mother managed to get a couple of years after being diagnosed and the drs told us she did better than expected. For that I was glad. They had assumed she would die pretty much within a year of her diagnosis if that. Re your mother, there's always that thing about how a parent should never have to lose a child, but a youngest child would hit even harder, I'm sure. My sympathies to your whole family.
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@usethepointyend welcome to the mbc club - a club nobody wants to be part of. I understand your vent. I also went from lump to mbc in a similar timeframe. The endless positivity can generate some fairly interesting responses depending on what sort of day I have had. I really like your breakdown of the key points of the behaviour underpinning the positivity. I give my kitties some heavy duty cuddling if i am really peeved after a "be positive - you are a warrior" conversation from a friend. Although I also get those conversations from people I barely know and who do not know me particularly well. You will find support here without judgement.
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usethepointyend, I hate toxic positivity, too. I think it often is about other people feeling uncomfortable talking about bc so they try to be upbeat. I also think there is a lot of societal conditioning of women to put a positive spin on everything, even something as ugly as bc. On top of that, women are expected to put other people’s feelings before their own, even when discussing their own bc diagnosis! What a shame! It is okay for women to have strong negative feelings when dealing with bc. All the feelings must be dealt with. We can challenge society’s pressures by telling people, “Maybe I will get to a better place with this, but right now I am scared, angry, worried and upset and I’m not going to apologize for feeling this way.”
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Divine, wonderful response to someone who wishes to gloss over another's medical dx.
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Oh, that positivity thing hit a nerve! If one more person ascribes my longevity to my positive attitude, I may let out a stream of not so positive expletives 🤬. So are they implying that those who have passed contributed to their own demise by not being positive? And don’t get me started on the whole fighter/warrior stuff either!
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Oof! I hate the “be positive” crap. I say it’s okay to have hope, but let the individual dealing with it have their emotions.
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Exbrnxgrl
Exactly! At my last MO appointment, I told her that I was really tired of modern medicine blaming the victims! She had just asked me, with a bright smile, whether I was "eating healthy and exercising" as that could prevent a recurrence. So if I don't do those things I have nothing but myself to blame for a recurrence? I reminded her that for decades I ate vegetarian, never smoked, drank only occasional small amounts of alcohol and worked out multiple times a day. Didn't prevent me from getting BC or from advancing to Stage IV 2.5 years later. I suggested that the "studies" she cited were a load of crap intended to dump guilt on women who are already struggling.
I choose what to eat and whether to exercise based on how it makes me feel in the moment, and sometimes the best thing in a particular moment is putting my feet up with a pint of Ben & Jerry's. Screw the guilt!
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eleanora, I’m so glad you spoke up to your MO. I hope your comments to her will make her reconsider asking the same question to her other bc patients.
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If I see one more ad for something to "prevent a recurrence" I think I'll scream. Even my MO, when I asked her about cutting out wine, said, "If it's something you enjoy, then why not?" I'm mean, what's the worst that could happen? A recurrence of my recurrence? Sheesh!
Love you ladies!
Carol
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Just want to say how much I agree with all above re "positivity", and the brave warrior on a "journey" business.
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usethepointyend you can feel how you need you need to deal with this right now. No one can tell you differently. Everyone is different in how they handle things. For someone to come and tell you it is wrong to feel one way is crazy. No one can tell someone their emotions in any situation in their lives. What happened to being nice to people and compassionate? You are supported here.
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I am just so angry - not at specific doctor or person or medical system - Just about the situation. I was recently diagnosed with liver mets - an incidental finding when I was having an ultrasound for something else. I am 4 years out from my original diagnosis and did all the damn things I was supposed to - exercised more, drank less, watched my diet.
I did the chemo to prevent recurrence, opted for ovarian suppression and aromatase inhibitor because it was slightly more effective than tamoxifen to prevent recurrence - I did all the things!
Now I feel like it all out of my control with so many unknowns and I just need to vent about it before moving on.
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