STEAM ROOM FOR ANGER
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Marijen, I was at a summit conducted by stupidcancer.org and the star of the show was there. I couldn't stay as long but people got to chat with her. The show however is done, it didn't get picked up for another season.
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Not surprised Unbreakable, the whining was terminal. A good lesson in how notto drive everyone away.
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Good rant from Margaret about cancer expenses taking her daughter's college fund. The only thing left to fund mykid's college is my life insurance. Either way my kid loses.
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ObamaCare
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Hi all, after six years of scar tissue and running of options, and me asking the PS office is Botox for this treatment covered, Medicare denies, and my supplement denies and I will be responsible the paper says as I perused the explanation. I can't take the crap of doctors saying there is nothing else we can do. Dealing with money issues to earn Long Term Care for a beautiful hubby, another stinking issue, going broke until LTC people are satisfied, struggling to get through each day, please just let me ramble, it is Sunday, my LD scar on back is starting up, blah blah blah before I start with the vile mouth. Sorry ladies, it says vent, so I am venting. Hugs to all,
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ronqt1- I hate that you are suffering but glad you are venting. Does that even make sense? {{hugs}} Linda
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Thanks for the tip on Chasing Life - will have to check it out.
Wish me luck and my ativan or attivan or however the fuck you spell it - keeps me from bawling and from ranting too far on my second opinion doctor's ears tomorrow. How much you wager my inner demon kicks in to see if we can trick this guy into agreeing that my fancy pants highly awarded onc missed my reoccurence back in September. Ok, that is not the main objective, it's to see if he seem nice, bright, sharp and would be available 15 minutes away vs 40 minutes. And he has the first full read of biopsy results tomorrow. I got them last week but this will be my husband's first go around. It's going to be a shit monday for sure.
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I'm new to the boards but I'm definitely glad I found this post in the early stages of finding out my diagnosis! I feel like I have a lot to complain about these days so here goes..... (also, nice to meet you ladies... before I unleash the crazy on you all).
First I'd love to talk about my sister who told me how great it is for her that I have BC, now she has someone to put on her t-shirt when she does a BC 5k in the spring. And how this whole BC thing is only an "inconvenience" for me since the diagnosis is so good. Yes it's quite inconvenient to fight off tears everyday, or think about not being there for my toddler next year. I know my chances of a "cure" are excellent but no one truly knows what will happen with cancer. It could be gone or it could kill me in six months. That's an inconvenience if I've ever heard one.
For the people who try to remind me how much worse it could be, and how thankful I should be for what I have, go F yourselves. I know things aren't as bad for me as for other people but they are certainly as bad as they've ever been and I feel I've earned the right to be as miserable as I want for a period of time.
Phew. That's all for now... I have a feeling I'll be back though. Ha.
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I am with you aquafriday. My mom, brother and sil ( they are " devout catholics") has not even called me once since I told them I have been dx with bc. When I called to let them know that I am slightly relieve that it was not found on snb, they basically said " great, you will be fine". Not one even emailed a "Merry Christmas". The rest of the pathology is not even in!
Apparently, some people believe that cancer is contagious.
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aquafriday121 I totally agree. I have not even met with the surgeon yet, but was suggested to by the radiologist that it is "stage 2" and I have already received the "well, at least you caught it early, or at least it isn't stage 3, 4". I mean WTF people. Seriously? I'm not even "officially" diagnosed and I'm being told it could be worse and/or that I caught it early? I have no idea if I caught it early, I don't have all the information and facts yet because of the holidays, so F YOU ALL !!! I mean seriously....F YOU ALL to those people!!! How can anyone remotely think it is okay to diminish your diagnosis? I literally had someone respond by saying "it could be worse". Um, really?
I'm angry as hell. Cancer took my father 3 years ago within 4 months of being diagnosed. So, I'm scared as hell no matter what stage, grade, etc. I am with this beast. So, again F YOU ALL to those inconsiderate jerks who respond so poorly.
*whew* that felt good
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Sas, you have started LOTS of great threads on BCO but this one is really one of your best and most inspired yet. Venting is good for the soul and only others who have been through what a BC diagnosis can bring can understand. As I have shared before, I am sick of people saying "It is only DCIS, not "real" cancer that you had/have. Yeah? Well BITE ME!
The TWO wire guided lumpectomies and the Radiation are real as are the side effects from the anti-hormonal that make me feel like shit every single waking moment. My breast looks like railroad tracks are running across it since two lumpies on a small C cup breast is a lot and it hurts when I reach up still, almost 3 years later. I still worry it will return as an invasive cancer since my odds are definitely higher than they were before my diagnosis.
Do I feel lucky? YES. Do I feel as though I did not have BC? NO! I know I did or I would not have had to go through all of that. I could have chosen not to but I am of the mindset that these doctors know better than I do what is best for me in terms of treatment protocols so I went with the standard of care and am not sorry that I did.
It boggles my mind that your sister said that to you aquafriday!!!! I would have bitch slapped her!
ayr1016, NO one knows your stage/grade until it is in the dish and pathology has gone through it all. So tell them to STFU!
Ok, rant over. Back to work (another rant for another day as we have a new system that is INSANE and working is so frustrating right now that I want to run home and pull the covers over my head!!!)
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April, Thanks a bunch. This thread was inspired by watching someone go through something with no where to let the anger fly. This thread is the antithesis of Warm & Fuzzies i.e. total opposites on a 180* spectrum. Here it's kind of the same color as the constipation thread. Difference there is we are trying just to get it to move versus flinging it. Let it fly and hope it hits it's mark.
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I hate dr's! Why the f*** do they play prescribing games? Why the hell wouldn't an onc prescribe Ritalin? It's not their life that is passing them by. They aren't losing time with their family. I'm angry, but now I'm tired
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Kjones13, do you have a nurse/patient navigator that can advocate for you or a social worker that can tell your Onc that you need to be more alert to spend time with your children and therefore need the Ritalin? I am so very sorry that they play God with your meds and are not giving you what you need! That is so not fair. I will keep you in my thoughts but wanted to tell you not to give up and to keep haunting your doctor until they give you the meds you need to function. If they are worried about addiction, that is patently absurd and really F'd up. Hugs dear lady. Keep on calling until they listen!!!!!!!!
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Kristen, If a drug isn't related to something they are treating, technically it's against their licensure. Some docs will just throw the dx into their problem list and deal with it if they're is a review. Who is treating your ADHD/Add? Is it being prescribed under an off label thingy? I fixing to ask my PCP for Metformin b/c of recent research. I know she'll be amenable. Insurance will be a stretch.
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I think I would just like to scream so I don't regret writing something, OK? Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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I'm having the same problem... I asked the rad onc for some sort of anti anxiety meds and he said I need to see my primary doctor. I can't stop crying and I already am going to be leaving work everyday for the next two months, you can't help me out and just write a rx for some effing meds so I can function and stop crying every five minutes? My blood pressure is through the roof and I cry every morning in the shower, but please, tell me to see a different doctor for this problem.
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The laws have gotten really tight on scheduled/ controlled substances drugs. The PCP should be addressing these problems. But some PCP's refer out for every dx. It's like "what are you here for". Actually, I had a homecare patient say that to her PCP. My PCP on the other hand IS perfect.
The trouble with referring out for every dx, makes the doc list very long. I had a PCP that was perfect. The last time I saw him in Jan 2009, I was newly dx'd with BC and a brain tumor. It was my pre-op workup. No need for meds. We talked about our brain tumors. His and mine. He had a recurrence shortly after that visit. I never saw him again. Went through the chit and DH Greg was dx'd with Lymphoma. Got through till August with PS providing pain control. The AI's hit me like bricks. Strange metabolism. The doc I saw in the same practice wouldn't prescribe anything. His comment "Can't you just learn to live with it?" I tried.
By serendipity I met my now PCP after an ER visit for a vein infection caused by a lab person in DEc 2009. I went in for a Rocephin shot. Contact should have been 10 minutes. I broke down. She didn't leaved me for 1 1/2 hours. I left with Ativan, Valium(muscle and TMJ), Oxy for breakthrough pain, Fentanyl patch 25 mcg, Savella SSNRI(provided samples b/c of expense). She listened and addressed each issue. Can't comprehend what life would have been like if I had never met her. Serendipity, for two reasons 1. she was one of two docs there that day. 2. She was only on the job for two weeks. She was hired to replace my doc of many years. It was like he had sent her to me.
Every controlled substance is kept in a database. It has to be checked before scripts can be written or filled. This is a serious issue in the cancer community. I'll link to a topic that isn't well viewed ---until needed.
https://community.breastcancer.org/forum/110/topics/830496?page=1#idx_25
This link is a short discussion on the problem. I started the thread b/c of what was happening on the threads with reports that members were having trouble getting their pain and antianxiety meds. Mags has linked multiple articles that show the problem nationwide.
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Just read a BCO link this past weekend on ASCO guidelines. It addresses pain and anxiety and what the recommendations are. But I didn't put it in favs. Got to it from a google search. Anyone that has the link. please, post. It's important to the above discussion.
What just ripped me on reading the guidelines wasssss.... It had this statement " The recommendations are based on Evidence Based Research and Consensus"
Chit............Got a hell of a problem with consensus. I can get consensus at the coffee bar. I want research based info.
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Okay another thing that rips me and I KNOW is wrong. Is the Healthy Lifestyles thingy being promulgated by too many organizations related to our health. Definition is below for promulgate. How this is negative to us is when the government, docs, and media take information that isn't evidence based i.e scientifically validated. We suffer. They keep promulgating it. Yet the scientific connection isn't made.
Definition of promulgate.
promote or make widely known (an idea or cause).
"these objectives have to be promulgated within the organization"
synonyms: make known, make public, publicize, spread, communicate, propagate, disseminate, broadcast, promote, preach; literarybruit abroad "they promulgated their own views"promote or make widely known (an idea or cause).
"these objectives have to be promulgated within the organization"synonyms: make known, make public, publicize, spread, communicate, propagate, disseminate, broadcast, promote, preach; literarybruit abroad "they promulgated their own views"
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Consensus can suck. Consensus can mean great things and it can suck. Nobel prizes have been given to people that consensus agreed at the time was great. History showed it sucked.
http://www.livescience.com/16391-top-5-nobel-prize-goof-ups.html
We would have not gotten here as a species if we didn't figure out what was........hurtful, killing. dangerous. In ancient times and ongoing times till the last couple of centuries. Observation and treatment was made by dealing with what was presented and figuring a solution.
Below is a definition of empirical science as it relates to recent history.
"Definition:Empiricism in the philosophy of science emphasizes evidence, especially as discovered in experiments. It is a fundamental part of the scientific method that all hypotheses and theories must be tested against observations of the natural world rather than resting solely on a priori reasoning, intuition, or revelation"
Got no problem with the definition. But when medicine starts to promulgate without science behind them. Got a problem. When other science gives mainstream science an avenue a good direction, and main stream docs avoid it b/c it means a major learning curve. Got a problem.
The problem is what I just wrote is esoteric--------not decipherable by the average person. ---------That is medicine i.e dx, treatment and all the stuff that is fall out of treatment. Well that just sucks.
But what I know, is I'm alive today because I didn't trust. I did trust my knowledge as a nurse. I did trust google to find a different answer. Had I trusted google to find a different way on thyroid cancer, I'd be sitting much better. Literally.
Had some wine.............join me?
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I'm a glass half full person 99% of the time but...recently had my SIL nail me for not attending a party for her to celebrate her 1 year anniversary of sobriety that was hosted by her sister. Never mind that I explained that I had a prior commitment that had been on my calendar for 3 months. Her sister sent me a note to inform me that I had been selfish; that my brother and SIL were hurt that I didn't show up. You can call me a lot of things but selfish isn't one of them; I won't go into the detail but I am a regular volunteer with two local non-profits that I enjoy, have a full-time job, am a single mom of two boys (one still at home), went through cancer diagnosis, treatment and aftermath ON. MY. OWN. 17 year old (at the time) had to step up and manage the household, shopping, yardcare, snow removal, etc...when I couldn't function. Had a strong support system but, no one there at 2am when the ugly beast roars the loudest, no one else covering insurance and financial needs, no one else to care for my boys if I couldn't. I thought it odd that my brother was hurt and thought it was OK to call me selfish...I sort of pushed him to tell me what was really going on. Turns out the family felt like I didn't do enough during the time that my SIL was in treatment, that I marginalized their issues, that I had no compassion and sensitivity to their crisis, that I made my BC a competition...sort of like, my medical issue is bigger than yours so I'm not impressed enough by your alcoholism to care or pay attention to your needs. UGH, her treatment coincided with my major reconstruction surgery (DIEP) and a time when I was just getting to catch my breath after finishing chemo, surgery and rads. Still dealing with the fear of cancer coming back; what would happen to my youngest if something happened to me, juggling strained finances with need to maintain/manage a normal life. And I am suppose to remove those barriers in my own life so that I can pick you up from the mess you made of your own. How dare you say those things to me, how dare you expect me to forego my own fear and concern for my life and that of my children, how dare you think that I marginalize or don't care about others suffering; I am more compassionate and sensitive to others in more ways than I've ever seen from you. How dare you make me defend myself from your accusations. I am angry that what was once a good and loving relationship is now tenuous at best, that anything in my life (good or bad) must take a back seat so that you feel supported and cared for. You have a double standard, the times you've failed me in one way or another were just minor inconveniences, nothing to be reminded of whereas one perceived slight from me and the world as we know it ends. You must be joking! I will not let you take away my pride in survivorship or the struggle to overcome these obstacles, I am a good friend, mother, mentor, daughter, sister and human. I am strong, you are weak and I will not apologize that it is so...
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Okay on a wine roll. Every bit of research articles that I've read about weight says "may" in relationship to cancer. That's because a causal relationship hasn't been established. But the friggen CONSENSUS is they're is a relationship. That so pisses me off.
Don't take a 'may' and change it into a 'causal'
But we have hope
Not for the reasons that the medical community has decided that it's a consensus point, but based on science that is only recently receiving recognition. The Microbiome.. The study of the bacteria that lives on us, in us, and around us. It's only gotten serious scrutiny in the last 15 years by the federal government NIH. The studies aren't included in the stupid healthy lifestyles media barrage. Reason is theses studies aren't conclusive. BUT. They are amazing. They are insightful. They rock.
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Good for you MEG2. Let it all out.
Shame on them. Selfish, selfish people. How dare they compare their self inflicted illnesses with yours.
Are you having a party because you decided to 'get clean' and kick cancer? I don't think so. Though I'm sure you would if it was within your power to 'kick cancer'.
I'm not minimising beating alcohol addiction but 'just get on with your life and stop patting yourself on the back for beating it'.
-and I know what I'm talking about-
Ignore their childish 'what about me' whinging. It's petty and selfish.
Good luck with your recovery.
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My vent facing recurrence....I was stage 2, double mastectomy (cancer was only on one side), clear margin, no nodes, neo chemo, no rads - 95% ER + HER - Tamoxifin....3 1/2 yrs later....probable stage 3 with 1cm mass and at least one positive lymph node in armpit...., possible stage 4 - will know next week.
WHY WHY WHY did I let the doctor, surgeon, gigantic hospital cancer care network "we know better" people tell me not to get my ovaries out? I was 40 and done having kids...women on my mother's side didn't go into menopause for years and years.....I was not BRCA positive but.....so hey, leave the estrogen producing machines in me and we'll hope Tamoxifin blocks all the chemicals they are still churning/ sputtering out since they are so good for my heart...which may end up 6 feet under, but in excellent shape otherwise - because we left the ovaries in and Tamoxifin didn't work.
Feeling like a fool....I remember telling the surgeon and oncologist with my husband by my side, I want all unused non-critical parts out of me. I was told this was the way to go, keep your ovaries, take tamoxifin, it's better for you. Well for 80% of the people who share my diagnosis. I was ready to play hardball but didn't get the support or encouragement and backed down. What a price to pay....
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Sas, it seems like half of the health "news" and "research" I read is trying to "prove" politically correct hypotheses demonizing weight, nutrition, fat, alcohol, etc. Most of the "findings" don't stand up to scrutiny, or, at best, show very weak or alost statistically insignificant correlation. Yet I see umpteen posts here from women trying to strategize somehow being perfect enough as to what they put in and on their bodies to escape the demon. Makes me sick. Those of us who have been here long enough know there were plenty of teetotaling, marathon-running vegans who got it anyway...
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7of9, we are sending you many, many hugs!
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MelissaDallas wrote, " Those of us who have been here long enough know there were plenty of teetotaling, marathon-running vegans who got it anyway"
Truer words have not been spoken. I get so very sad when I see ladies here saying they gave up milk, meat, bread, cheese, wine, LIFE for pete's sake, all in hopes of minimizing their chances of it not coming back or getting it in the first place if it is not yet diagnosed. We all know it is a crapshoot and it can be very random and unfair. Many, many smokers who are overweight and eat chili dogs morning, noon and night don't ever get this nasty disease while those who are vigilant about healthy lifestyles do. Ugh...
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april485 " Many, many smokers who are overweight and eat chili dogs morning, noon and night don't ever get this nasty disease while those who are vigilant about healthy lifestyles do. Ugh..."
Thank you for saying this! My diagnosis is very recent and so much is going through my mind. I do not (thank goodness) blame myself (yet?....I say that as I have no idea what I'm going to feel from moment to moment) for anything I have done. Breastfed three children, have NEVER done a recreational drug, have mildly drank alcohol my whole life (glass or wine here or there with a few times in my younger years of going out party all night kind of nights
, am a vegetarian. Blah Blah Blah. That said, I do want to get healthier to boost my immune system.My rant for the day. Why do people think it is THEIR RIGHT to tell other people about your diagnosis?? It just makes me so dang angry. I tell people I'm taking my time and being discreet and selective in who I tell (right now) as I'm still trying to process it and get my bearings. It is a little awkward to have (what I thought was) a normal conversation with someone (who I barely know) to find out later that they have already been told. Um, okay...thanks 'so and so' for not respecting my wishes. Unbelievable!
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