STEAM ROOM FOR ANGER
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Thr Pink Parade
Disclaimer: I dont think awareness is bad. People should see how wide spread breast cancer is and demand something be done. I’m very grateful breast cancer has so much funding & movement. Show unity. Show survivorship. Raise money. Show an honest portrayal. All that jazz.
Rant time. It has become a joke almost. Everything in the store is a pink ribbon thing. To me it feels like it diminishes what the people dealing with this disease are going through. Oh it’s just breast cancer. Everyone lives forever with breast cancer nowadays just look at the commercials...This lady is going back to work today not a spot of hair on her body (she must have completed treatment the day before since it hasn’t started to grow back) and she is so happy and perky and doesn’t look like she was fatigued a day in her life. That’s a real cancer patient, someone fighting and fearing for their life, if I ever saw it. It’s a breeze beating/living/dealing with cancer. This IS NOT how I want to be portrayed. Hard chemo that leaves you a naked mole rat is hard and maybe someone out there flew through it like a goddess, but let’s not glamorize it. SHOW the fuzzy wussy was a bear phase. It’s not pretty but it’s what many have to go through. Let’s do a fun run to show we know about breast cancer and sell some more stuff. Maybe I’m just angry, because I know it has served some good out there. When you are in the thick of it rolling down a mountain hitting all the trees on the way down the last thing I want to see is a pink ribbon pep rally. There’s a lot of positive but there’s much suffering that isn’t portrayed by the hyperpinkpoptosis that is breast cancer awareness month. I’M AWARE!
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Micmel,
You have also inspired and brought me a lot of comfort on these forums. All I can say is I share your fatigue, but these are the moments when you say f u to the cancer because that’s when it starts to win. You stay strong not for the moments when you don’t need need it things are going ok, good scans, less pain, you found $1 in your pocket, but right here. Today. Tomorrow. When you feel like if I die today or next week it’s all the same right? What’s a few more days. I know these are dark thoughts, but I think it’s important not to pretend we don’t think them sometimes. Those days are important. The reasons vary for everyone. One more smile on their child’s face. A chance to tell someone something important. Feel the sun on your skin and know you were a tangible good that forever altered the world. I think the word ‘fight’ in relation to cancer might relate not just to the disease, but ourselves. Sometimes I feel cynical about it. I’m not fighting I’m trying to outpace a beast.
Hang in there and if your reason bucket is empty do it just to say f u cancer
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candy that is truly accurate (as an MBC cancer commercial comes on tv). It’s heart wrenching, and we are pushed along for the ride. Like loosing your footing in snow or ice, skidding along not wanting to move but not able to stop. Knee deep in the mud, or spinning wheels knowing you're stuck. I feel every single word you write.
Runor~ always gets me too. Somehow that connection is there. Even though we've never met. I feel close to you. You take the time to care. That is a Wonderful feeling. To know someone. Cares. I am making sure that I tell people these days. People that I go way back with, sometimes things become pointless to harbor anymore. Especially ones that really didn't even get involved in drama within the family. Sometimes they feel the same way you do and you never would have known. Had you not even spoken. I've cried so many tears. Each one seems to sting lately. Like the hurt has become exhausting to even shed a tear anymore and it's settled into a sick feeling everyday in my stomach, and of course with my nerves shot that stomach turns to pain. We must go forward even though for me , forward has been taken away, I move but it's not forward. It's obeying time. Which again I have no control. I'm weak then strong, strong then weak. It's as chronic as the disease I face. I never know what emotion will un controllably escape my heart demanding to be said. Again no control..... face down on the sandy beach tussled about in the waves, lucky to have found land.. but realizing you'll never be saved.... ever..
Parry~ thank you for caring. Thank you for your response. Reading different opinions thoughts and ideas gives me tools to try to distract my mind. My emotions can't handle anything anymore. My nerves are weak and I fear every little thing. I can understand why women give up. Everyday in syrup wading through just to get the strength to get out of your own mind long enough to remember to eat. Yes... they do understand here. ~M~
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runor
That's very well said. I agree, there is much wisdom on these boards.
I recently read something similar on these boards, I wish I could credit the person who posted it, but she wrote about not being able to sleep and having dark thoughts in the middle of the night, and that she would then tell herself, "it's OK, right now at this moment I am safe in my bed, nothing bad is happening to me at this moment, I am in fact doing fine at this moment lying here safe and secure in my bed" and checking in with herself as she continued to lie awake, and reassuring herself over and over again, that "at least for right now I am alive and OK."
I have used that thought to self-comfort myself, fighting back against the fears and dark thoughts that often come in the middle of the night ,forcing myself to concentrate on the present, and that for now I am alive. And I am not denying that sometimes the current moment may indeed be filled with pain and suffering, but hopefully there is some reprieve from those moments for all of us.
For me breast cancer seeks to rob me of my presence and my present moment. I cry to my own SELF, "Don't leave me" and am fighting hard to not desert myself in hopelessness.
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Micmel
I don't know what to say. Your posts are so expressive and heart-rendering and I wish I could comfort you, and reach across the internet and give you a huge hug. All I can say is I am here in spirit with you, in solidarity. You are not alone, I can see there is much love for you on these boards.
hope and peace,
Amica
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micmel I feel badly for you having to deal with this in what should be a joyous occasion and you are struggling.
Like the all cancer matters idea! If someone knows how to market that bet you can make a fortune selling bumper stickers or window magnets for our cars!
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The fortune to be donated for research of course!:)
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Oh Micmel great big hugs hun, I am so sorry you are feeling this way. Have you thought of talking to someone? I see a therapist and love her, she has helped tremendously with everything that has been going on. Have you tried screaming at the top of your lungs for a stress relief? My DS1 told people "my mom goes to the garage to scream." Embarrassing, but I know I am not alone, a woman I worked with told me she would do the same thing - heck that's like where I got the idea from! haha I hope today is a better day for you.
xxx
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I am grumpy today. Started out with a 10 year old girl that couldn't manage to get her stuff together and get in the car anywhere near on time, then she didn't have any shoes, etc. etc. I then called a provider to add a bill to my already existing payment arrangement, they apparently can't do that. When I asked to speak to a supervisor, he hung up on me, I called back. They will not add the 2 bills together and give me one payment per month, now I have 2 payments per month from the same place at a lot higher amount. Do these places think they are the only bill you have? I'm tired. I'm crying. I'm hungry. I'm sick of breast cancer. I just needed to vent. Thanks.
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Trail~ you’re not alone. Wrapping you in arms. I understand... we all do. Fu cancer
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OK, two thoughts have occurred to me this week, kind of connected. A friend on Facebook posted about having a "minor" throat surgery and then having the recovery way worse than described by her doctors. Several people chimed in on comments that that is pretty common, me included. I think I actually said, "they never tell your the truth about anything." After about 10 or so comments like this, one person had to say, "on a positive note, I hope you feel better." Now, several people had said they hope she feels better, etc. but the "on a positive note" stayed with me. Does there always have to be "a positive note?" Maybe there is not. My friend is a singer, a serious singer. The difficult recovery from throat surgery is a really big deal to her. No positive note. Or any note.
Then that lead me to drug side effects. I have at least two doctors that think that if a patient knows about the side effects of a drug, they are more likely to have it. I've known about this for a while. I finally decided to see if there is any actual research that shows that. Yes, there is. Several studies exist where a control group was not told about a drug's side effects and a the study group was told. The group that was told had more of the reported side effects than the group that was not told. My question is this: is it a question of HAVING the side effect or REPORTING the side effect to a doctor. I think patients are more likely to report a side effect that is known and has been reported before. If you come up with something new, never reported before, you are reluctant to report it. You think maybe it is due to something totally unrelated to that drug. Or you think that your doctor will not believe you or shrug it off as stress. Or your doctor will think you are being difficult or non-compliant. This has happened to me many times. So I have to doubt this research.
On a positive note, I obviously need to stop thinking so much.
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Jaycee-the answer is that it’s about recognizing the side effects and what caused them. Now, what the docs are trying to avoid in this case is someone having another cause for the side effect, blaming the drug and refusing to take it anymore. For instance, a lady called in insisting that the medication she was prescribed for diabetes (not metformin) caused her to have explosive painful diarrhea for 3 days and she only took took the one dose. Diarrhea is a listed side effect of the drug but not that common. After a little more questioning she’s said the medication and a cleanse she bought at GNC were the only things she did different and it couldn’t possibly have been the cleanse and so she wasn’t taking the diabetes medication anymore. Unfortunately docs are dealing with the general population who don’t always think logically, Don’t understand the disease/condition or it’s treatment and don’t want to. So they just don’t discuss side effects.
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Interesting study on SE from medications, jaycee49. I struggle with even talking to my oncologist about potential SE which is probably not a great idea but I find they are usually dismissed. Not much they can do about it and we kind of need the meds. I was a bit pissed at the nurse who told me that I was more likely to have SE from Ibrance due to my coloring - fair skin, blue eyes. I did not need to hear that. Fortunately she was wrong and I’ve been on Ibrance and letrozole for a year now with minor SE. And on a positive note - just kidding!
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I think it is a horrible idea for a doctor not to discuss side effects, and even worse to lie about them. I was told that since I had had very few, almost non existant problems going through menopause, that taking anastrozole would be a piece of cake. NOT! I lasted 4 days and when I reported my side effects to her she acted totally surprised! So much for trusting her.... I think the truth belongs to the patient. Was she thinking that the power of suggestion would negate real side effects? The next doctor I saw warned me that I might experience “a few” hot flashes with the tamoxifen he prescribed. This time I read the fine print and decided that with my family history of heart attacks and strokes and my current age that I was not a good candidate for this drug either. How can you expect that a doctor who denies side effects will be able or willing to help you deal with them?
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Lula, that case you describe is kind of extreme. Many patients do understand the disease/condition and it's treatment and do want to. That includes myself and most of the people I've met here. Doctors not wanting to discuss side effects because they think the general population doesn't think logically is overly paternalistic and just wrong. I agree doctors sometimes do this but they should not. My side effects are real and I want my doctors to discuss them with me. What you describe is exactly what I'd like to change.
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I can't find my pocketbook or shoes. Oh well, I guess I'll stay home. Still feel crappy from this sinus tooth infection only 2 pills left. Not getting much attention from doctors mine are on vacation. I want to go on vacation but can't for 2 weeks.
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Jaycee49,
Interesting. Also, have you ever noticed that if you look at actual drug prescribing information, which is based on randomized double-blind studies, the control (placebo) group always reports a bunch of drug side effects at often close to the the same rate as the group that is receiving the drug! Just being on a "drug" even when it is nothing but a sugar pill, people report side effects. But of course they also report "benefits." Just shows the power of the mind, and how we interpret things!
I never like to know most drug side effects, like joint pain for example, because I feel then my mind will instantly grab onto that symptom, and I'll start feeling that way!
But I do agree doctors should be upfront about serious side effects like potential cardiac risks and things like that.
But really it's all online in the prescribing information or from your pharmacy.
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Jaycee, do NOT give up thinking. The world needs more thinkers!
Does there always need to be a positive note? I think there is no one right answer to that. I think it's a case by case judgement call. However, there is always that one Pollyanna, you know her, her braids were never lopsided, her dress was always perfectly pressed and she got As on all the surprise spelling tests. She raised her hand and stood smartly at attention to answer the teacher, her voice never wavering. If there was some shitty situation that required commiserating, she would skip in like a barf inducing ray of sunshine and be that pissy positive person that everyone wanted to slug. So I think that comment 'on a positive note' was less about having to find positivity in the situation and more about the person who wrote it calling attention to how wonderful and different and high minded and spiritually developed they are (gag). That comment was pure attention seeking and a subtle reprimand to all you other Negative Nellies that it's better to think like her than like you. Tutt tutt. I believe that sometimes situations are shitty, all you can do is acknowledge the shittiness and not gloss over it and diminish it with a positive spin. Sometimes sharing the misery is a true act of friendship, without having to make it all better. Sometimes people who have to make it better do so for their own comfort, not yours. They do it because they cannot cope with the inner turmoil of feeling powerless and miserable. They will not sit with those bad feelings. They have to scurry to make them all go away. It can be, in some cases, an act of cowardice. It takes backbone to bend under the weight of someone's unhelpable misery. To stand with them and not make it anything other than what it is.
DO some people imagine side effects because the doctor mentioned them? Yes. The power of suggestion is strong. However NOT being honest about side effects is assuming your patients are stupid and that you (the doctor) are in a position to edit and manipulate information so that the outcome is not problematic for you. I believe it is possible for doctors to open the door to truly hearing their patients by saying something very neutral, but that shows they are willing to respond to any issues that might arise. Like :" This drug has some very rare cases of side effects and I have read about them. But in the vast majority of users, it is very well tolerated. That is why I am choosing to give it to you, I really can't foresee there being any problems. But if you notice anything, please do not hesitate to call the office." I feel something like this sends you off with a partial reassurance that all should be well, but a willing acknowledgement that it might go the other way and if it does, the doc is there, willing to hear you out. The doctor does NOT have to read you the package insert. Those who are very worried can do that themselves. But I do think not acknowledging the possibility of side effects leaves many patients feeling pressure NOT to report problems.
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runor- Most of the time I agree with you, but we differ here. I think I’m one of those who do try to be positive and make people feel better. I try to put a positive note to things, to look for a silver lining. But it’s because I know things could almost always be worse. I had a shitty childhood, and was on my own and homeless before I graduated from high school. But...I learned independence, I learned to be a fighter, I learned that there were good hearted people who were willing to help. I had an abusive first marriage to an alcoholic turned drug addict. (Poor choice on my part, I know) But I had two beautiful children who gave me strength and a reason to struggle on. I got cancer, but I live in a first world country with a cancer center 15 minutes from my house.
So yes, I do try to find the positive side of things. But it’s not because I’m clueless. And I do recognize that not everyone wants cheering up. But Hope is a powerful thing.
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I agree that hope is a powerful thing. I believe most of us have had shitty childhoods someway or another. I had hope that maybe I would be a happier adult and not be saddled with yet another mountain to climb... except this time I am not going to get over that mountain. Cancer has seen to that. Now I shake my head and pretend to listen. Hope never made me rich so I can pay my medical bills without starving ...hope never took away my cancer to allow me at least an adult happiness and security. Something that was never In my childhood. Everyone has to learn to be scrappy somehow. Life is hard.... hope or not. And far as being positive... that’s great. We all need a little sunshine now and then. So keep spreading that positivity!!!!!
Much love~M~
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Jaycee-when you're working on a daily basis with patients who don't have a clue and don't think using the logic more pro-active patients do, you realize that ladies like us are the exception. And we tend to surround ourselves with like minded pro-active people and that becomes our view of the average patient population. I never thought that way until I started witnessing it everyday. It totally baffles me. I'd like to think the example I gave was extreme, but trust me when I say it's not, it's just one of the more recent ones that stuck with me. Unfortunate. Makes me even more grateful for this site and you ladies.
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Thank you, runor. I was starting to think I was alone on both of my issues. The positive note thing is up for debate and I can see both sides. My friend with the throat surgery actually posted later that she felt fortunate (even mentioned being in a first world country like Peachymom) and was grateful for that post by her "dumb as a rock" relative. Woke her up. Fine. I get it. Some people are just positive all the time.
On the side effect issue, I was really worried that everyone thought they are all in our heads. I'm glad I'm not a patient at Lula's medical office where they seem to assume patients are generally illogical (stupid) and side effects should not be discussed. Just like with the side effects, if you have that idea in your head, it will prove to be true (even if it is not). And any perceived side effect, whether psychosomatic or not, is just as painful/bothersome as a "real" one. These issues need to be discussed/explained patiently and calmly to patients during any medical visit. Now I know where the blowing off behavior of my former oncologist comes from. Any side effect I would bring up, he would say, "that's not a side effect of this drug." No explanation. No wonder I stopped telling him anything about side effects. And changed oncologists.
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I agree that doctors can be too quick to blow off a patient's concerns.
Case in point, I have a small white nearly translucent spot on my forehead. My family doctor looked at it, and breezily said, "Oh, that's nothing to worry about." I have a new medical oncologist I just met with for the first time last week, she looked at the spot, and said, "That's not cancer."
Yesterday I accompanied my father to his dermatologist. She saw me and she said, "It looks like you have a basal cell carcinoma on your forehead. You need to get that biopsied." She told me it is not urgent, and of course no one knows for sure what it is until biopsy.
And I went online and saw that breast cancer patients are at higher risk for skin cancer and vice-versa. Don't the doctors know that?
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I think we all know people who find something negative in everything. They thrive on turmoil. That’s just as annoying as someone who is a super Pollyanna. I’m somewhere in between.
I acknowledge and deal with the bad because what choice do I have but I don’t wallow in it. My MIL was the stereotypical rose colored glasses person. You didn’t have permission to be angry about something because....even when they weren’t her situations to deal with.
We can hit a happy medium. Realistic, hopeful and guardingly optimistic.
Diane
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micmel- You are one of the sweetest ladies on these boards. I see you give understanding and encouragement to others. I know you are suffering, but you use even this awful disease to try and help others. There is strength in trying to make whatever good we can come from this monster. Thank you.
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Cpeachymom- I agree wholeheartedly with your post regarding Micmel. You said it beautifully! She is always an inspiration to me as well.
Stllivin- Suzy
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omg I never expected to read something like this. 😪 I am very touched. I care deeply because I understand. I am a very out going person. It's my nature... but I cannot tell you how much I appreciate you all even noticing me. I am like you, trying to find my place. My safe haven. I cannot thank you both enough for sharing how you feel. It truly touched my heart and I will never forget it. Ever. ❤️ Much love and friendship ~M~
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Stillivin - am I reading that right?? You’ve had MBC for 21 years??!?!
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oh gosh no, (I had a hard time figuring out how to properly fill in all my info. - so I just gave up) 15 years with bc andMBC only 5 years working on my 6th. I was 36 went I first got bc, my kids were 6 and 8. I've been fortunate to see both graduate high school and college and buy there own homes and one get married. Even with all that wonderfulness, the MBC threw me for a loop and it's been such a hard emotional and physical battle and I can't figure out why. (TMI) but felt good to get out.
I do hope for 20 more.
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so do I darling so do I. You deserve it! 💙~M~
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