STEAM ROOM FOR ANGER

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  • 7of9
    7of9 Member Posts: 833
    edited January 2016

    Marie711....good for you!!! I never got nipple surgery or did fat grafting after implants though I would have liked to. Was too afraid of recurrence and messing with a good thing. You know what? I now have a regional recurrence! I had BMX though BC only in one side. NO REGRETS!!!! I was envious of the women that could get and did get lumpectomy and rads. Maybe if lumpectomy had been an option I would have gotten rads instead of BMX clear margins - oh you don't need rads. Now....rads! This disease is frustrating and scary enough without one more damn outsiders opinion - especially offensive ones like the cut off the hand statement.

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  • Englishmummy
    Englishmummy Member Posts: 337
    edited January 2016

    Great tips, Sas. You are such a brilliant resource - you do so much for the people here, I am sure many appreciate your candour and humour. I do have the binder, creditkarma etc. as I said I am cuckoo about keeping our finances straight and to the penny. I like the 'negatively impacting me financially' statement. My hubby would have no problem engaging a lawyer. Ha! Glad I am not the only that disputes the pennies. I do too. It always seems someone is trying to take more than they are entitled to: we are a one income family, and just like any other family - pennies count. Having said that, is there a charity or organization that helps people with BC pay their bills when they can't afford them? The adults in our family don't do gifts but instead, pool that cash to make a donation to a charity. I'd like to give to something like that, any ideas or suggestions.


    Oh and Marie, I felt the same way, having to defend my decision.Well, not any more. Everyone (not that many people know but almost all that do, outside of family) has said " why on earth would you get a double mastectomy - such a rash decision?" Nope, nothing rash about it, it was a completely calculated decision, based on the information I had from the Dr's and knowing myself, being 100% honest with myself (hence, I reconstructed). But I just tell them, "because that's what I wanted - when you get bilateral B.C. at 41 we can talk about what's really a rash decision. 'Til then, STFU." Grrrrrr. So easy for people to judge when they have never encountered anything like this. My husband tells me I got new boobs with matching sassy pants! Please or offend, he's a straight shooter whereas I've always been a pleaser. Your choice, her choice: the same or different: we are all individuals - we all make our own choices and I for one, don't regret the path I took, seems you don't either, so that is as it should be. Each to their own - although if I may say, I find her Dr's comment a little flippant.


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  • Jumpship
    Jumpship Member Posts: 305
    edited January 2016

    I'm scheduled to babysit an elderly family member who is in hospice tomorrow. 9 hour shift. 2 hour drive each way. I had to beg for someone else to spend the night because she is up every hour. Pissed because I just finished treatment a month ago. I haven't slept 8 hours straight in 16 months. No one cares. It's my turn. That's how they see it. I feel like I'm sacrificing my future with my kids by meeting this family obligation . I'd love to help but on a scale of 1-10 I feel like a 2. When my dad was on hospice he would have wanted me to have shorter visits and heal so I could be a mom. I'm sure I'm sounding heartless. Who wouldn't want to be with a dying family member? I'm in so much pain and fatigue that it's difficult to man up and be there. My oncologist has said no long visits but the family doesn't hear that message.

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    How often do you do that? Maybe it'd be worth it to pay someone for the day

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Englismummy, thank you for such a nice thought, certainly a day brightner. Counters the few that I've gotten, that took out my jugular.

    MONEY, get a Social Worker consultation. They are the keepers of the list of resources for everything. Mine gave me a list that had organizations with phone numbers. Some national and some local. My Dh got 5000$ grant from the Leukemia and Lymphoma Society. Plus, the local chapter of LLS was 150$. We used every penny. Then there was a local charity that covered only two counties. We each got 2000$. That was a total of 9150$.Every penny used.

    He got 1000$ the next year. I got 1000$ the year I was dx'd with Thyroid cancer from the same organization.

    Each organization has they're criteria for approval and how the money can be spent. The local charity specified it had to be spent on non medical bills i.e utilities, groceries, property taxes. LLS was all related to medical stuff.

    Most cancer centers have Foundations, again they define what they will cover.

    Healthwell Foundation helps with meds. http://www.healthwellfoundation.org/

    If found an old post that had even more ways to find money that I had forgotten about. I left it intact and just reposted the whole thing :)

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    This is an old post regarding finding money

    May 28, 2010 03:30AM - edited Aug 15, 2013 07:50AM by sas-schatzi

    It sucks to have to go through this, but not having things organized to your usual level of organization just adds to the stress. The amount of paper that starts flowing your way can be daunting. Having some idea of how to manage can help.

    I can add a newly learned item. Check with the cancer center that your working with to see if they have anyone assigned to apply for grants for whatever you might be eligible for. We found out 4 months after the neulasta copays were building up that our cancer center would do the paper work immediately after we said we were falling behind in payment because new insurance didn't cover it. Now they are all covered YEAH!!!! that amounts to close to $ 2000.00. good luck!!! Please post any new ideas or links to assistance money.

    Edit:6/6/13 Found two new web sites that are a must to review. One is on saving money on drugs. Start with 'home" page , then the really helpful page is the "First time users" Pg. Link is to home pge.

    http://www.needymeds.org/index.htm

    This next link is dedicated to most of the need to know info regarding work and cancer. BCO has much information on the main board, but this link is much more expansive :)

    http://www.cancerandcareers.org/en

    Per my resource: This is how to make the needymed.org website work or other resources work for you while receiving cancer meds in a cancer center, SPEAK UP and let them know you need financial help, best to do when you have initial contact with CC. What they then do, if they are connected like mine, they go through their resources the same we would, but would be contacting as a a provider. Grant money or assistance can be available under all kinds of circumstances. Do not assume you make too much money or b/c you have insurance, money is not available. If say you get turned down initially, rechecking with organization is a good thing to do should you're circumstances change. :)

    Edit 8/15/2013: submitted by Shellshine. Link is to a website Re:Soccial Security Disability

    http://www.disabilitysecrets.com/social-security-disability-breast-cancer.html

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    "Englismummy, thank you for such a nice thought, certainly a day brightner. Counters the few that I've gotten, that took out my jugular."

    Sas,
    I have never posted to this thread before but got a good chuckle out of your comment. I've had a few posts/pm's that went straight to disembowelment and wishes for progression of my bc. Just a few mind you, but pretty crazy that people even think like that. Never thought I was a lightening rod for such vitriol, but I can only shake my head and even laugh, in the end. How can we have such bitterness and hatred for folks we don't even really know?
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  • Englishmummy
    Englishmummy Member Posts: 337
    edited January 2016

    exbrnx - I have seen posts from both yourself and Sas countless times, they are ALWAYS reasonable and well put together, often involving very relevant research.Unfortunately, the internet does seem to provide somewhat of a 'mask' for vitriolic, vindictive personalities and I guess B.C. can bring that to the forefront? I believe many who post such nasty things (here or anywhere else) are individuals who generally wouldn't say 'boo, to a goose' in the real world. Hence my 3 children have very limited access and engage in NO social media. Please keep doing what you are doing, I for one, am most appreciative.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Englishmummy,

    Excellent insight into the situation. I do not expect that everyone on bco will like me, nor I them, nor do I expect everyone to agree on all things. What I fail to understand is why swearing and vulgar personal attacks need ever be a response to any post. And hoping that someone has progression? I simply don't know what to say to that. In my real life, no matter how angry/upset family and friends get with each other, I've never heard anyone speak to others that way. Yes, I know people do but not in my personal or professional circles. Take care.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Exbrnxgrl, Progression that sucks, that is about as hateful as it gets. I awoke on day with a PM that would singe your eyebrows and the next PM in sequence was similar to what Englismommy said. I was so thankful to have the nice one after the burning one. Not sure what the rest of the day would have been like.

    We just keep on trucking. Convoy like in the Bandit.(hope that's not an obscure thought--loved that movie), sometimes we lead, sometimes we follow, and sometimes we jump into the cradle :)

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Dec 29, 2015 12:24PM - edited Dec 29, 2015 12:25PM by MelissaDallas 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...

    Melissa agree whole heartedly. I know you read lots of studies too. Terribly frustrating to read biased studies that then someone else extrapolates on the biased information and publishes articles as true. Also, something that is common in studies is after reporting 'whatever' they follow with we 'think this might be related too_______'. That is not unreasonable because the researcher is drawing together thoughts generated from the study. This kind of observation leads to further research. But again some yoyo comes along that doesn't understand that the statement is an observation for future research and prints as a true fact. We then end up with the "Healthy Lifestyles" promulgation of so many organizations.

    Lordy, just recently they're was a huge oncology fiasco with this type of thing, The research was out of Duke. One researcher lost his priveleges to publish or be funded for 5 years. Another expose earlier this year, was in the Psychology field where 50 studies based on one erroneous research had to be retracted.

    It gives science a bad name for sure. But does support us being our own advocates. I learned early as a young nurse to study hard to learn as much about the area I was working in, so if I was given an order I knew if what they were saying was right. May sound weird, but it isn't. Caught countless errors.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Smoky and the Bandit? We're dating ourselves 😝.


    Seriously, I have only heard people speak in such crude, nasty language on reality shows that capitalize on that kind of stuff. It really blows my mind to realize that it goes on, for some, in the real world
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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Ex, Smoky and the Bandit--------1978-1980? Well I was in my 20's and now I'm in my 60's. If this BC chit doesn't get me, with the family longevity history on my Mom's side, I should get into my 90's. All the cancer chit came from Dads side.

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  • enjoyevrymoment
    enjoyevrymoment Member Posts: 334
    edited January 2016

    I found this thread and seriously chuckled at all of it yet felt sad as well, people said exactly what I have been struggling with here almost two years post diagnosis. I do KNOW I am blessed that it was found at stage 1, and no mets yet. But I just know too much. I don't sit around all the time waiting for mets to come get me but unless you have dealt with having cancer, you really don't get that when stuff happens like bad bone pain it is the first place your brain goes. I am gaining weight like a hog on this Femara and eating like an ever loving Spartan..... a girl at work got breast reduction and said to me "now I am in your club". Really? She took the same amount of time off, six weeks, and I am sorry, you are not in my "club"......

    I am a person with strong faith but I am human too and I am also driven crazy by people saying "asparagus", "don't harbor bitterness" (was I bitter, I sure wasn't aware of being bitter?!).... And please don't tell me I am CURED. That just feels weird. Thank you ladies for letting me vent!

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Enjoyeverymoment, What a beautiful screen name. Bless you. The weight thing---.We know it's the AI's, the docs say count calories and exercise. Shaking my head. Our docs are our life resource for intervention, and the treatments are killing us or making life more complicated. They're a bunch of threads that I suggest you read with the goal of developing a comeback library of comments and a quick assessment of whether the person

    1. is so stupid they can't be educated,

    2. Misinformed and can be educated,

    3.Do you waste your breath on them and it's best to turn and walk away,

    be back with some links

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  • ronqt1
    ronqt1 Member Posts: 811
    edited January 2016

    ShetPon and sas-schatzi. I have not been on the boards since my initial rant, have calmed down and have a date to hopefully temporarily remove my implant due to nerve damage. No, there was no discussion with me to them about sharing info. I let my PS what I thought of his office mate. As a young PS coming up, I was told by my PS that he does not care. My doctor is an old timer and said he did not know. His staff said they told him. Anyway, I let it go. I went for a second opinion with another old timer who knows my PS and I finally have calmed down. This decent human being second opinion guy said I might never go back to the old me with my condition as my PS has told me. A heavy decision is being made for me to lose my breast again. I am sure I will survive.

    Thanks girls.

    Hugs,

    Someday I will go through the rants after the surg. Still circumventing taking care of alz husband too.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    Sorry Ronnie, sucks. So, praying for you. You've been through too much.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    I came here to cry, don't mind me, just move along.

    I talked with my MO today. I just had three chemos and now I'm depending on trials. There's no cure, only trying to keep the desease away as long as possible. If I don't make it to the trials then it becomes "life extending" chemo. How did I end up here? What kind of karma is this? Yes, I gonna ask, why me? In general, I try to enjoy every day but today is a "crying" day. Almost a month ago I saw a dream about me dying and it was so peaceful.I woke up and felt calm and ready if I have to die here and now. A month later I'm furstarted with not knowing what's going to happen. I'm not buying anyhting cause I think I will never wear/use these things. I'm that close to book a ticket to somewhere and get away of all the hospital appointments and treatments.

    Find the cure for this bloody thing!

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  • april485
    april485 Member Posts: 3,257
    edited January 2016

    ((((MoreShoes)))) Just sending you a hug...and I agree. It is time for a cure...way overdue.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2016

    More Shoes, Hugs and praying

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    (((((((((MoreShoes)))))))) We are sending you as many cyberhugs as we can. You are not alone, and we are all here for you. Cry as much as you need with us!

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    Thank you all so much for the virtual hugs. Moderators, thank you for creating a safe place to cry and let off steam. At home, I try to act "normal" so not to upset the kids. I don't know when is the time to tell them how bad things are.

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  • rossileo18
    rossileo18 Member Posts: 245
    edited January 2016

    I hear you Moreshoes!

    Sometimes I just want to crawl into a dark place and disappear. this morning I just cried and snuggled up to BF and just thought of all the beautiful things in the world that I will miss and the life I thought I would have. I try to be philosophical and find something to enjoy each day, but it is so hard. And then I had to get up and go on with life.

    Hugs to you. Anna



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  • lbchaos
    lbchaos Member Posts: 2
    edited February 2016

    I'm new and excited to find this forum. I've been stewing all day. Had my surgery in late Dec and just started chemo last week. I've barely heard from my parents or brother. I sent them an email today telling them it hurt me that they've shown so little interest and both my mom and my bro came back immediately blasting me. My mom even said "just because we don't call everyday doesn't mean we don't care." Call every day? Had chemo on Weds, got a quicktext on Saturday checking on me. She and my dad had guests so they were too busy playing golf and going out to dinner. My bro ranted that I am a monster for judging him and I have no right. He's never called, doesn't visit, and sends a text every couple of weeks that say things like, "You good?" to which I get one word replies if I tell him what is actually going on. They are all actually pissed at me because I expressed my hurt during this horrible time in MY life. I didn't think they could be any more narcissistic but they've totally proven me wrong. Honestly, they should be a case study for how NOT to provide support to a family member going through cancer. Everyone can say I should be used to this from them, and I guess I am, but that doesn't mean it hasn't completely destroyed me as well. When do I get to the point where I can just walk away?

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited February 2016

    Sorry, I need to vent. My husband was basically gone the entire time I was going thru treatment. Didn't go to one doctors visit with me. Now, I didn't have recon at the time, he said it wasn't important. Tonight he is at the bar with his attractive and 2 years younger than me co worker, who has supposedly been his rock thru all this. He won't have sex with me, and I told him I would start looking into reconstruction in 2 years or so...whenever my radiated skin is ok . I'm sad and jealous. He just plays video games at home, he doesn't want to interact with or touch me. I wish he could have honestly told me that no breasts was an intimacy deal breaker at the outset. I would have done a lot different. I'm sorry for typos...my phone is hard to type on. Thanks for letting me vent!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    wow, you've been through a lot bmx, radiation, and chemo is devastating emotionally and physically. But you've probably kicked the hell out of your cancer. Plastic surgeons can do great work. I don't know how long you've been married but he sounds very immature, he needs to thank God he has you. Maybe a counselor is needed for this marriage.

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  • Janett2014
    Janett2014 Member Posts: 3,833
    edited February 2016

    lbchaos,

    I'm sorry that your parents and brother aren't more supportive. Do you have other family and/or friends who are helping you through this?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    Really angry tonight. I haven't been feeling well. Headaches sever sinus eye issues, I been to doctors no answers yet. My husband making snide comments because I've been had sleeping issues.

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  • Jumpship
    Jumpship Member Posts: 305
    edited March 2019

    I hear you Meow! Tonight I'm pissed because my family seems to think that the life of an 80+ year old is more valuable that the life of a mom with kids still in the home. It's not a one day event. My doc has said that I cannot do the caregiving that the family is requiring of me because I am not healthy enough myself. That's not the way they see it! The last thing I want to do is look into my kids' eyes and say, "Yep! Mom's cancer has returned because she caved into family pressure and took care of your grandmother instead of taking care of herself so she could take care of you." There is nothing that I do that is special for her. Most of the time she just needs company. I guess I'm angry at myself for not having the wherewithal to tell the family "hire someone" or "I'll hire someone" because I'm important to me and my kids. My kids are not grown. They need their mamma. My mom would like to have to kids around but really, anyone can do it. Come on...think of your grandkids. Last time I did "my share" as they call it ittook me 8 weeks to recover from it. I did not fight this hard to be able to continue being a mamma to have that taken away from me by mandates from "family" that never once came to chemo.

    Rant over.

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  • lbchaos
    lbchaos Member Posts: 2
    edited February 2016

    Thanks, Janett 2014.

    Thankfully I have a TON of support from my husband and his family as well as my friends. I just don't want to deal with my parents or brother anymore, they're nothing but hurtful and negative. I've read so much about how when you get diagnosed you truly learn who really loves you. The way my family has acted will affect my dealings with them going forward forever. I surround myself with love and positivity, I can't deal with their negativity and hatefulness anymore, especially not when going through all this.

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