STEAM ROOM FOR ANGER

Lita57

I hate to be a bitch, but is anybody else getting sick of the St Jude Children's Cancer Hospital commercials besides me?

They seriously need to do a commercial about us Stage IV gals who can't work anymore, only get a fraction of what they used to net from SSDI, can't afford their expensive chemo, can barely pay their rent, AND SEND US SOME MONEY TOO!!!

Nah...we're not gonna send you any money. You're already on death row. But you can have a pink ribbon instead.

😝

Artista928

I do see in recent weeks a ton of commercials for Ibrance for mets. Of course the person dx'd is smiling and all. Yeah, that's reality. Who wouldn't be smiling on any med that makes you miserable and has a ton of terrible se's. stupid

Micmel

Bosumblues~ I am sorry if I tend to ramble 😞, all of this is so frustrating, I know you're having a terrible time of breaking down your mothers house and have your own set of sadness and reconciliation of emotions to do of your own. I am not only angry, I promise lol I do love with all of my heart my DH and you're 100 %correct some people don't find that person. That's why I started my own happy thread lol my husband my love my life my cancer, because there I am asking people to share their love stories with me because I'm a hopeless romantic and adore hearing about how strangers or not strangers even fell in love. Some have posted beautiful flash back pics of their lives with hubby and family. I started it to see that there is a lot of wonderful good relationships to be thankful for. That is where I read people's smiles when they talk about their person. It warms my heart. Thank you for your kind words. You ladies are strong and wonderful to share such emotions as well all do. I send you all huge hugs and many wonderful blessings as we fight and go on through this disease. ~M~

Micmel

Bosumblues~I am on that medicine and trust me, I am in No way Julie, don't get me wrong some people may be Julie, but usually not after the awful chemotherapy that they barrel at you, I cannot work, I am physically beaten down, everyday with such fatigue that word doesn't even suit it. Everyday I live with worry, how long do I really have? What is that new pain? I used to jog all the time, fatigue has put an end to that, I can barely get out of bed. No glamorous career here. I lost my hair so I don't look like Julie either, and when my alarm goes off in the morning. I am not ready to hit the ground with a stretch and a smile, and they say perhaps it will work for two years or more and that is ok???? Just two years we can help you ?? Really ? That's worthy of a commercial? I don't like pink at all, it annoys me and I hate the entire commercialization of the mere fact they shove all that shit down your throat! Meanwhile, it is swimming throughout our bodies venturing to a new island for residence. While when I do wake up in the morning. I am faced with another day of exhaustion, mouth pain (like my tongue has been hard boiled) bone stiffness and joint pain that just hops around my body like the worst flu you've ever had except this time, This flu won't be going away. EVER. And the medicine you take for it. Just slowly kills us. Harsh reality being handed the black ribbon. I don't have any parade around me, there are no walks for the black ribbon survivors , no special rallies for metastatic women who suffer daily waiting for the grim reaper to appear behind us knowing when we will go. Each day is called a life I know, but it doesn't necessarily mean one is actually living it. You can say love each day. Hell I have even said it. I guess we say what gets u through But for me each day, means I am just another day closer to more scanning and facing endless scanxiety sickness and endless port accesses. Endless.....shots and 14 pills daily.....endless.....until it isn't anymore. ~M~

exbrnxgrl

Olivia Newton John is very much alive. She now has MBC, but she is not dead

Mimi2kleh

Well I missed a day here, and I missed a lot! HUGS to you all.

I HATE all those commercials! All the people are always good looking, even the kids. And they always have a wonderful spouse and family for support, who go through everything with them. So unrealistic. They just make me feel worse, fatter, uglier, and more alone. I have started muting the tv when they come on.

As for Olivia, of course I feel for her, recurrence sucks! But yes, she has definitely done us all an injustice. We know there is no cure, surely her doctors have informed her. So why doesn't she speak up, with the truth! Why does every celebrity that gets BC, seem to have an easy time of it, and breezes thru it?! There has to be one that has had some trials and tribulations with the disease. I also suffer from PMPS, which NO ONE tells you about. It has been in the closet for so long, that many doctors aren't even aware of it! Surgeons don't want to admit to it. Yet they have been doing studies and research on it, all over the world for a long time. Many women have been told it's all in their head! Thank god I found my PMPS FB group, it has saved so many women. We constantly talk about how we need a celebrity, that has it, to come forward and talk about, and make the world aware of it. Someone to tell the whole truth, about BC and all it can entail! I knew nothing about Lymphadema either, before finding that group. Fortunately I don't have it, but damn, that is something they need to tell every BC patient about too! These aren't little side effects were talking about, they are life changing, never-ending, permanent issues!

And yes, Alzheimer's is nothing to smile about. Both my dad, and stepdad suffered from it, it is a horrible way to go. I think it is worse on the family, than even the patient.

sweetp6217

My rant: In my case, My husband's MIL moved in with us when the doctor told her she couldn't be alone after her colon St 4 Non-hodgkins lymphoma surgery and during treatment. She didn't like it since her own house was closer to her hospital, but none of her children, including my husband could move in with her for her "year' of care and treatment. My husband (who works at a smaller big box store) quickly notified his boss that he would need to always have Thursday's off to take care of all her appointments and treatments. How wonderful of him and the nurses to arrange everything around that day of the week. Every week, there was something to do and he took her there with no complaints, at first. At one point, she even switched some of her doctors to our local hospital after she was rushed to the hospital with bleeding. That hospital is literally a rock thrower's stone's throw from our house. Both of us visited her every day that she was there. Same thing when they transferred her across the street to rehab. Side note, none of Mom's kids aside from us help out.

Just before she moved back in with us, my angel of a husband revealed that running Mom around on Thursday's had put a dent in his off time, WHAT? Note: he can be good at holding things inside for a very loooonnnng time. Fast forward to my BC. He works at the same place that he did then, but there is a new boss that is trying to shake things up with hours. Instead of a team working 4 to noon, some weeks, he wants them to work 10:00PM to 6:30AM, again WHAT? That started right when I was diagnosed and my treatment begins end of July 2017. My hubby is telling them today that he needs to have Thursday's off again, for at least a year and will make up for it on Saturday's; the work will still be there. But, apparently, the boss still wants him and his whole team to do this crazy shift that can be done during the day. BTW, customers can't find any help during the day if there's no one there!

When the team was told in a meeting that they were going to be working crazy shift for a week again, they all said NO. There was silence and an angry look on the top manager's face. Someone is going to cave, I have a feeling because every once in a while, they see a group of people in orientation. Most of them don't stick around, I wonder why? How does this effect me? Well, if he works until 6:30 AM, then waits for my appointment(s) to come up, drop me off then run home to sleep, he won't get a decent 7 to 8 hours to sleep before that 10:30 PM shift that night. That work place is nuts.

Way back when it was less difficult to find night owls, I used to shop there because I was a night owl too, back then. I hated shopping when they had the aisles all clogged up with skids of product at midnight. The reason I shopped then is because hardly anyone else was there and I had just gotten off work so it was convenient.

Anyhoo, he knows how chemo goes, but of course, the two treatments are different. What's my rant? I'm afraid that between my shorter hours at my work (if I can even work!) and the possibility of his job loss, you can just imagine what's going through my mind. I just got a peek at my bills for pre chemo and I about fell on the floor. At least $25k and I have yet to get a PET scan and ECHO w/chardio consult, not to mention the PORT. I could just scream.

Yesterday, I broke down crying on the way home from work. I haven't cried since my MIL passed away this year. Didn't cry when I got my diagnosis or before then during all that testing. My boss is such an angel and has bent over backwards to fit me into a new schedule that will work for me. Her eyes kind of bulged when I told her that the treatments, in total, would be for a year. But she calmed down when I told it that the chemo was only for 6 treatments. Bless her, she didn't know about all that yet. Isn't ignorance or inexperience bliss? I'm done ranting and hope that my husband's grinch of a heart grows from a pea size to a normal heart.

runor

I have been absent for a while. I am staying away from home, at a lodge, while I take daily radiation treatments. Was told that mid way through I could expect some redness. By treatment 3 my breast was red, swollen, and hurting. I have had 8 treatments now and my chest wall feels like someone smashed me with a baseball bat. And even though the rad onc tells me the nukes are missing my lymphatic drainage system, my left arm feel swelled and itchy and weird. I have read enough to know that this is likely going to end with lymphedema. Flock.

The rant today is husband. God I seem like a flake how one day I love him and next day see nothing but divorce in our future. But he said, in a text, "I feel that you do not have cancer anymore and that you are not dealing with this in the best way. Your attitude about cancer will kill you long before the cancer does. Haven't other people have told you that your attitude is a problem?" Uh .... what does that even mean?

I don't have cancer? Then why, in the name of god, am I subjecting myself to radiation? Why, if I don't have cancer would I take five years of tamoxifen ... for cancer cells I do not have? If I do not have cancer, why will I have mammos in 6 months? For someone who does not have cancer I sure seem to be getting processed as if I do!

i WISH I could get cancer out of my mind. It's like being hit by a truck and with your limbs all broken and twisted being expected to get up and walk like you did before the truck hit you. My husband, and other people, want to put this behind me. God, I get that! But I don't think it's for me that they want it, but for them. It's okay if I am terrified and have it on my mind like a lurking vulture, waiting to swoop in and peck my eyes out, just as long as I keep it to myself and never mention it. They want their life back and that means I cannot have cancer, do not have cancer, will never get it again, end of story.

I feel like a burden and a problem when I am told that my fears are unfounded. I think several people around me are in a heavy state of denial. But it's damaging. I am pissed off as hell but too tired and too sore to even express it clearly.

I am so heartbroken by what I've read here. Some of you are suffering serious misery. Words escape me. I pray. I don't even know for what sometimes. For whatever it is that each of you needs.

Freya244117

Runor, I blame the whole pink shit propaganda for people believing that "attitude" will make any damned difference to how your cancer progresses or not. You were only dxd a few months ago, you are still undergoing active treatment, what the hell does he expect?

Once you finish treatment and as time passes cancer will not be the main focus of your thoughts. It is a grieving process, it takes time.

((hugs))

Artista928

I loathe Oct pink awareness shit. Everyone is aware by now I think. Why not focus not only on the research in better txs but asking people to help individuals. Donating to the cause is nice but some people are alone and have no help. They need help with meals, cleaning, laundry, kids if any. That part gets lost as it doesn't occur to people because all they hear is donate now!

Freya244117

I'm with you Artista. I was getting monthly requests for donations for BC awareness, tick the box to say how much you are giving type of thing. The lowest amount was $50. I sent one back letting them know that I was stage IV and that it was costing me a fortune every month for meds, and I did not have any spare money for awareness.

The next letter I got was how to leave them a bequest in my will.

Mind you, my bank is just as bad, they called asking if I wanted to buy life insurance. Told them they wouldn't cover me because of my circumstances. 10 minutes later, another call from the bank offering estate planning, at a cost of course.

Sometimes it just feels like vultures are circling.

Micmel

runor~please tell your husband that if he really believes that you all of a sudden do not have cancer . (Or that he would even bring those words to his lips is ridiculous, not to mention that the one thing in this world you want to hear is that you no longer have cancer) tell him I have some property for sale just for him that backs up to DEENIAAL river!!! I want to kick him in the shin for you. (I don't want to really hurt him, because I know you do love him) grrrrr family makes me so mad. I am so sorry for you! ~M~

Sweetp~ as far as your hubbys job. I am praying that all the hour business will work out. I know how stressful that can be. Especially when you no longer have the strength to do everything you used to do. Sometimes I. Don't think employers are employee friendly. 😕 Idiots. Prayers for you and your family. Also for all of us BC sisters (and in some rare cases brothers) ~M~

leftduetostupidmods

runor. Getting cancer out of your mind? It took me over 3 years before finally the first thought when waking up was not "cancer". They can't realize, because they don't live with the scars, the pain, the fear,

I remember that right before the first surgery, the big one, BMX + LD recon, while I was waiting in the pre-op, I was bawling uncontrollably. My (ex now) boyfriend was trying to reassure me that everything will be ok, the surgeons are great, I'll go through treatment, all the yadda yadda, and was siderated because I normally don't cry, ever. I couldn't explain to him that I was crying because I knew that life, as I knew it, was over, and I was entering a journey to Hell from which I knew there was no turning back.

sweetp6217

Thanks Micmel. Yes, Prayers and hugs all around!

Mimi2kleh

WTF is wrong with your husbands?! UGH, men! Hoping you guys can get thru to them. Runor, glad you checked in, and that you're able to stay at a lodge nearby your radiation treatments. I cannot believe your husband said that! So sorry you're having such a hard time with the rads, sounds awful.That's one thing I haven't had yet, radiation. I remember when I was first diagnosed, I always feared chemo the most, thinking radiation was much easier. Then I heard from so many, of the reality of it, and horrors it can cause. Another issue that is white washed in the public.

My rant tonight: I ordered a newer version iPad from the online Apple Store. Mine is old, and past its ability to be updated. It crashes all the time, won't load so many pages and articles, and now there is a loooong lag even when typing. I have to type in notes and copy and paste it everywhere else. I live on this thing, since I can't do much else. So I finally splurged to get a newer one. I bought a refurbished one, which I have done before. If you get it from Apple, it is like brand new, new glass, cover, everything, and has the same warranty as a new one. I never had a problem. Well the new one came, and I tried to set it up. Only it wouldn't load all the wifi networks to join, it would only show half the list, and of course my network was in the half not showing. And it wouldn't let me scroll to find mine. After fighting with it for 1/2 an hour, I finally decided to call them. The first guy was very nice, but after spending 30 min with him, off and on hold, trying everything he could think of, it still wouldn't work. So he gets someone else to help me, his super or something, and this guy was horrendous. They didn't know if it was a hardware or software problem, and the only way to tell was if I had a computer, with iTunes installed, so they could have me run more things to try. I told him I had an old computer, but it wasn't set up. He argued with me for 30 min, and wouldn't help me. He kept telling me to get my computer set up, and then call back. I told him repeatedly that wasn't going to happen. Then he told me to find someone who has a computer that I could borrow to try this. Um no. Then he wanted me to go find the nearest Apple Store. I told him I couldn't, because I was home bound doing chemo, for cancer. He didn't care. He just kept telling me the only way he could help, was for me to do one of those three things. He just repeated himself over and over, or sat there in silence. A few times I had to ask if he was still there. No matter what I asked, he shot me down. I told him I bought a product from them, it doesn't work, it is up to you to fix or replace it, it's not up to me! He just kept saying we can't until we know of its a software or hardware problem. I said I don't care what kind of problem it is, it doesn't work! He just kept arguing and saying the same things over and over again. No matter what I asked, he would never answer my questions. Finally I said that's it, tell me how to return it and I will go buy one elsewhere. He said he can't do that. WTF?! I'm like, yeah you can. I bought an iPad, it doesn't work, I want to return it. It has a warranty. He still wouldn't do anything. My head was spinning, I was so upset, frustrated and pissed. I finally asked again to speak to a manager or supervisor. He said there weren't any. I kept asking and he kept saying no, he was the only one. He kept telling me if I want to talk to anyone different, then I need to hang up and call back. Again, WTF?! I flipped out and started yelling, you can't tell me there are no managers or supervisors in the hole f*cking Apple Corporation! I want to speak to one now! He hemmed and hawed and wouldn't answer me, more silence, then I was put on hold again. I just started bawling, I was so upset and mad, all I wanted was my iPad. Why does everything have to be so damn hard for me? Then a woman comes on the line, along with him, and says she's is going to take over. It's been an hour now, and I said so I'm going to have to start this all over again?! She could tell I was upset, and said don't worry, I'm going to take care of you. When I told her everything this guy said, she was horrified, she just couldn't believe everything, She said in all her time, she has never heard such bad stuff. She notated the time, and all that, and said the call was recorded, so hopefully he gets his ass straightened out. I spent another 30 min with her. She sent me a return label, is sending a new iPad, and threw in a $40 cover. She felt so bad, she was in disbelief of what this guy did and said, as I was. She apologized a million times, and said that is not how Apple operates, I said I know! 1-1/2 hours, one heart attack and one ulcer later, I'm getting what I should have gotten the first try. UGH

Then, thinking the night couldn't get any worse... There are two elevators in my apartment bldg, it's a senior building, so very necessary. Well, 2 1/2 weeks ago, someone knocked off the fire sprinkle, flooding the area and taking one of the elevators out of commission. This has caused me to walk A LOT, which I trying not to do because of the hand and foot syndrome from the damn chemo. To go Anywhere. I have to walk around the whole building to the other side, to take the other elevator, then walk back around the building to the side where my car and apt is. Then do it all over again when I come home. And have to do all that anytime I go anywhere in the complex, for laundry, trash, mail, etc. My feet are getting so bad, and they haven't even been working on the elevator since the first few days! Someone told me they're waiting on Ins. GRRR Then tonight, after I calmed down from the Apple fiasco, I decided to take a walk. I needed to get mail, including meds from my mailbox, and take out trash, and drop a letter off at the office. So I loaded up my walker, to do one trip for all these things, trying to walk as little as possible. I walk around to the other side of the building, and take the elevator down, I got to the first floor, and the doors don't open. I start to freak, then hit the door open button a few times, and thankfully it opened. I was so afraid of getting stuck in there, it's like over 100 degrees in that elevator. So I do all my tasks, and walk back to the elevator, and there's two women standing there. The doors are still open from when I got out. We pressed all the buttons, and now this elevator won't work. So there we are, on the first floor. Where none of us live, two of us with walkers. Are you friggin kidding me?! How the hell are we supposed to carry our walkers up a flight of stairs? I also had a ton of mail, and a huge package of mail order meds to carry. So I walk back around the building, down the parking lot to my car, and put my walker it. Then walk back around to find the nearest stairwell, climb the stairwell, then back down the long hallway to my apart. By this time I am beat, it's in the 90's with monsoonal humidity, which we are not used to, I'm drenched in sweat, my back hurts so much I'm hunched over, walking SO slowly, and my feet are burning and stinging horribly. Again, so upset and frustrated! And I really needed my walker upstairs, as I'm going to stay at my sons for a few days tomorrow. So I have nothing to carry all my belonging, to take with me, and no elevators! I don't know how I'm supposed to get everything, including myself, to my car in the morning! I have such a headache, I wonder why?!

NOT MY DAY!

dtad

Lita...so sorry you are dealing with stage 4 BC. However, I'm not sure what that has to do with commercials about St. Jude! One has nothing to do with the other. Nobody should have to deal with cancer and its affects on their lives but its one thing to deal with it as an adult and quite another as a child! Absolutely nothing is more unfair! As for Pinktober and the lack of awareness and concern for stage 4 BC, I agree. St. Jude is a wonderful hospital that renders free care and a multitude support for patients and their families. I for one will never get tired of the commercials. Good luck to all navigating this complicated disease.

Freya244117

dtad, this thread is for venting. You don't have to agree with what has upset someone, they have the right to their feelings and to express them.

I personally think it is the height of hypocrisy to post on another thread "Yes, be nice!", and then come to this one and not only pass judgement on Lita for her feelings, but throw in a guilt trip about children dying of cancer as well. My stepson died of brain cancer as a child. Lita dying of cancer is going to be no less devasting to her family as his death was to ours.

Surely we do not need to have a hierarchy of who's life is worth more added to our problems.

pupmom

I've been debating posting this, but here goes.

First, I have been married to a wonderful man for 26 years. I would consider us soul mates (even, fwiw, we have the same birthday, although he is 7 years older).

But, previous to meeting my beloved DH, I dated a man I was crazy about. His wife had been kidnapped, raped and murdered about 8 years prior to our meeting each other. Anyway, although he wanted a woman in his life, he absolutely could not let go of his tragically deceased wife. Her pictures were all over his house and he referenced how awesome she was frequently. Well, at some point, I wanted more than just dating, and that was it. When I stated where I was coming from, he ended the relationship.

Fortunately, my knight in shining armour was just around the corner. The rest is history.

Just trying to say that for some people a truly loving marriage can't be replaced. In a way, they feel it is sacrilege to even try. As in my case, they may have relationships, but the ultimate commitment is not possible in their minds.

Micmel

pup mom~I agree with you completely. That is how I feel with my DH. Being so ill at such a young age scares the hell out of you. I just am happy I found my DH and would never be able to love anyone else because my. Life long love for this man, is what I committed too. It's what I only want. I think although sad for that terribly tragedy, I guess for him, there just wasn't getting over something like that. I am happy you met your knight! We all must find that knight in life. It makes it so much more worth living. Hugs ~M~

As far as the commercial commentary. I don't like the big pharmacy companies., those commercials aren't realistic by any means of what having the illness they depict in that commercial is usually not fully accurate,(there could be flukes) the st Jude's commercials I can handle, and I don't want those babies or children to suffer either. I do believe though, that they are played way too much. If I am honest as a fellow stage four patient (as Lita is) I can understand that feelings of being on the end of the forgotten condition. Is no picnic either. We have financial restrictions, and have adult problems that don't allow others to take care of us, because we are in a complete state of knowing that no matter what care we receive it only prolongs what will inevitably happen to us. We don't see any commercials in support of metastatic breast cancer or even the acknowledgment, that tons of women live with this everyday. Just as those poor innocent children do. Just in different ways. So in my mind, if you had these small, adorable innocent children in a commercial you would be a lot more willing to shell out some cash for that, then for older bald, boobless in some cases, pale, Bent over, some unable to walk with out a walker because of agony from bone mets. I just think it's the selling of the children that bothers me. Whereas. Us metastatic cancer patients have no parade in pink ribbons, no fund to supply us with thousands of monthly dollars in medical bills and tests and shots. And etc... on that one. We are adults that have been handed the black ribbon with no hoooplah of ringing any chemo bell at the end.... so if us stage 4 ladies are angry and feeling a littleLeft out.. you'll have to please excuse us. Our lives are literally flashing before our eyes. I love children more than anything and st Jude's is good. It's just merely pointing out that we have been forgotten in the awareness arena ~M~

JKL2017

Lita & Micmel (& all of you who are stage IV), I am so sorry for what you are going through. My younger brother has lived with stage IV kidney cancer with bone & lung mets for 11 years. He has been through numerous rounds of chemo & clinical trials, had a kidney removed, had a metal rod placed in his leg & can no longer work. He (like all of you) continues to inspire me every day. When I was diagnosed, I asked him for advice & I've used his words as my screen name - JKL (Just Keep Living). It's all any of us can do.

Now I will take Sass' advice & find another thread for awhile (something that makes me laugh or smile!). I'll stop by periodically to check on all of you (& to rant when the need arises!). Wishing all of you peace & strength - JKL

Lita57

All I have to say is, "STAGE IV LIVES MATTER!"

It shouldn't matter if you're age 5 or age 55.

pupmom

Micmel, I feel the same. If he were to go before me (and who knows, I got cancer, he has a heart condition), I have no interest in looking for love again. I've had the best, and want no substitutes, lol. Regarding my former boyfriend, it is probably impossible for we who have never experienced such horror to know how it traumatizes the survivors. When she was murdered they had 2 and 3 year olds, along with 2 teenage kids. Wow, I have no idea how they all got through it. I'm sure having the 16 year old, yes 16 year old, killer caught and prosecuted helped, but OMG, how does one cope with such a thing.? That's why I never really resented her, and actually understood his inability to "move on." Everything has a purpose.

Micmel

pupmom~ god bless you and your knight! I hope you have many many years together in happiness. I intend To never give up. This steam room helps let out some loose steam. I created a thread about love stories and have been asking people to compile their stories, so we can have a happy place to share Our wonderful love stories. They will live on forever there. You're a wonderful loving woman. I am happy that you found your man! Hugs!

Waving hello to bosom! ~M~

Lula73

just a few comments on the st Jude commercials-

I am a childhood cancer survivor. I went to St Jude who referred us back home to a nearby teaching institution which was doing the exact same therapies and had the #1 RO on the east coast heading it up. After 9 months of 2 different chemos and 2 months of rads 5x week I was good to go. (Now I'm here with my 4th cancer diagnosis his time BC). I am forever grateful for them and the valuable research they do. However I cannot watch the commercials. Maybe if they weren't a mini-infomercial it would be better. But that's how they raise funds and I can't think of a group of more deserving patients as they haven't even lived their life yet.

And Stage IV assistance:

Then on the other hand Stage IV BC is treated like the red headed step child. And none of the women and men diagnosed with stage IV did anything to cause or deserve it. There should be more help for them. SSDI is not enough. It will take someone or a group of someones to put together some sort of foundation and market it well (like St Jude or Komen) for donations to help support Stage IV diagnosed individuals. Who would be able to start this foundation i don't know, but it needs to be done.

A different perspective on those pharmaceutical ads and pharmaceutical reps:

Pharmaceutical ads are actually quite important with the way medicine is today. Patients need to know their options and need to bring them up to their dr. It is amazing to me the amount of info docs are able to retain but they can't retain everything that's out there. This is where the patient comes in - If you aren't an advocate for yourself you need to be. I remember having uncontrollable nausea and vomiting with one of the chemos. None of the anti nausea meds worked. I happened to see a magazine ad in the MO's waiting room for marinol - synthetic mj in a pill - and asked if I could try it. It never entered the MO's thoughts to try it. And it worked. In another situation I developed a skin reaction (painful boils that would last for weeks) to eating foods containing wheat. Before figuring out that not eating wheat made the problem go away my doc and I tried some common antibiotics for skin issues and different anti-bacterial soaps, creams, etc. but nothing worked. I later read a study that had success in resolving this skin issue with a 30 day course of levaquin. It's not 'standard of care' for that condition but my doc let me try it and guess what....it worked. If I hadn't asked and pushed for it my doc never would've known about it much less brought it up. Think about the neulasta commercial. If you're receiving chemo and have to trek back to your dr the day after chemo for a shot when you're feeling miserable and may look even worse than you feel and due to the chemo have significant risk of picking up any little bug in the doctors office that could now kill you due to the low white cell count and you see that neulasta commercial. Tell me you wouldn't want it. Tell me you wouldn't be wondering why your dr never mentioned it...did it maybe have something to do with the dr wanting the nurse visit payment? Or maybe he didn't know it was available? Or maybe he thought you wouldn't want it and don't mind dragging yourself to his clinic the day after ravaging chemo. Because of that commercial you now know there is another option that allows you to stay in the comfort of your own home the day after chemo and still receive the white cell booster you need. I have many other similar stories I can tell. So instead of seeing those commercials and pharmaceutical reps as a way to make money for the pharmaceutical companies, Maybe try seeing them as part of the education and self-advocate process for patients who are suffering with various health issues and as a resource for the docs who rely on the reps to stay up to date on the latest medications/treatments and are on call 24/7 for questions from the doc to help them help you. And let's not forget the free samples we all love to get and appreciate :-)

So here's my rant:

There's a thread about if you don't have anything nice to say that berates a forum member for asking posters who post the same or similar questions all over the place to please stick with the original thread as the board guidelines ask. Simple right? We all read the rules and agree to them. I post pointing out that it's frustrating when posters post all over the place like that asking the same thing over and over and that my opinion was they're not reading or following the guidelines. I post a prime example where someone has posted on a forum that even states in regular size print (not small print) not to post on that thread it's for information only and someone posted there just a couple hours prior and people were responding. The response to my post is oh the mods will move it. That's my point! The mods shouldn't have to move it. It's really not that hard to read the rules and follow them. It's called respect. Every single one of us has been at the early stages and somehow managed to follow directions. They are there for a reason-to make the forums easy for everyone to follow and find threads. Littering them up because you didn't get any responses quick enough for you, you didn't like the answers you got or you just decided to blatantly ignore obvious 'don't post here' instructions is not ok No matter if you are just diagnosed or an old timer. Being new or distraught is also not an excuse for not reading and following guidelines. Others making excuses for this behavior just validates it and it will continue. Whatever happened to respect and accountability?

RAnt over

Lita57

Lula, good points.

I haven't encountered too many individuals who post the same stuff on two or three threads. Maybe that's because I only follow a handful of threads and the people are decent (i.e. they follow the "rules"). The people who do post 2X usually apologize profusely and explain WHY they are double posting.

I have found that it usually takes more than 24 hours to get an answer to an important query. Sometimes a responder needs to do a bit of research b4 they can answer back so as not to give false info. As anxious as we are, we have to wait and give it time. We must also remember that we all have LIVES. Most of us don't check these boards every hour on the hour. We have other things to do: go to dr appts, do labs & blood draws, scans, and go to the wonderful IV infusion clinic for hours at a time. We are also NOT doctors. We are just individuals who share our experiences with various treatments and similar situations. We are mostly here to provide support and hope.

I'm pretty neutral regarding the pharma commercials. These companies have to have some way to get info about their new products out there. If you don't like it, change the channel, or DVR your favorite shows so you can just fast-forward thru the commercials. That's what we do in my house.

Maybe someone like Olivia Newton John will lead the vanguard regarding the "forgotten" St 4 patients and funding support for those who can't pay for necessary Tx. Then again, she has money so she obviously doesn't have to rely on the pittance one gets from SSDI or whatever they offer in Australia. It's not something she or her family have to worry about. Countless St 4 patients (this includes the men who have BC, too) have to stop Tx because they simply can't pay for it anymore. We practically went into bankruptcy paying for my mom's St 4 soft tissue sarcoma Tx. My dad even drained all of our college savings accounts. Her condition was considered "pre-existing" so that's just the way it was back then.

I don't have the answers. But I have plenty of questions. Why do we fund pink ribbon campaigns that are more for St 1, 2 or 3 women who will get to ring those "end of chemo" bells, and we do next to nothing for St 4 women? Why has society totally discarded and forgotten us? Our families have not. They love us just like they loved us when we were "healthy." Our lives still matter just as much as a sick child who has his/her life ahead of her. Society loses and has to pay dearly when one of us dies. We can no longer work and pay our "taxes" into the system. Some families have to go on the "dole" for a while after a parent dies from metastatic cancer until they can get back on their feet financially. We can no longer contribute to society by volunteering. Volunteers save communities thousands of dollars by providing valuable services that tax dollars would usually have to cover. [Our church has a free dining room, offering meals to the homeless. We don't take a penny from the govt to do this, and it's staffed by volunteers who cook, serve the food, clean up, etc. I used to serve before I got sick.]

I'm not trying to dis the kids at St Jude's, but they run that commercial SO MUCH out here in California. Yes, their little lives matter, but so do ours...even if we supposedly "lived" our 50+ lives. Some St 4 women couldn't live to see their kids graduate, let alone attend their weddings and hold their first grandbabies. They had to enter hospice earlier than they'd planned because they simply ran out of money - not Tx options. They didn't want to sink their families further into debt just to get maybe 6 to 9 more months of "quality" on another Tx which their insurance wouldn't cover and they themselves would have to pay for. And the newer immunotherapies ain't cheap. They cost thousands of dollars a month if a woman can't find grants or help from the pharma companies to help defray the costs.

The reality is there are no "St Jude's" out there for us. We're Stage IV. Already on death row. No one wants to donate money to women with one foot in the grave. Only the women who had good jobs and were able to sock away lots of retirement $ will be able to survive past "the median average." They'll have the $ to pay for additional Tx that will keep them alive for a few more years. The rest of us will either be in the ground or in an urn on a shelf way before our time.

pupmom

Micmel, back at ya!

dtad

freya...never said she didn't have the right to vent. Also validated her dealing with stage 4 BC. Just did not understand the comparison to childhood cancer which was made. Plus I was nice!

Freya244117

dtad, I have no desire to argue with you, but I will respond to your 4 points. You have totally missed the point of this thread.

freya...never said she didn't have the right to vent. -

This thread is for unleashing and getting it out of your system, and then walking away hopefully feeling a little better. Being told that your feelings are wrong is not helpful nor is it "nice".

Also validated her dealing with stage 4 BC -

I have no response to this that does not involve prolific profanity. I will give you the benefit of the doubt with just a bad choice of words.

Just did not understand the comparison to childhood cancer which was made. -

She said she hated the commercials. You were the one that made the comparison.

Plus I was nice! -

That may be your interpretation or intent. I just see the classic "shit sandwich". Say something you think is nice, fill it with criticism, top with something you think is nice again, cut in half and serve with a smile.

wrenn

^^^

FelineMum

STOP TELLING ME HOW WELL I'M TAKING THIS!!!

You have no fucking clue how I feel. But to you, I don't look like I have cancer. I don't look like I'm in Chemo. 'scuse me, but no one gave me the handbook on how to look like a Cancer Chick. Does this guide have pictures? Do and Don'ts? Lists of rules? I suck at following arbitrary rules. And I'm very good with makeup. That makeup class teacher seemed to feel bad that I already knew most of what she taught.

Do you see me when I don't have a polite smile on my face or even a real one? Ah 'tant dead yet. And I refuse to live like I am. You don't see me when I cry or rant or worry. You don't see how lonely this is. I look fine, so I don't need help, eh? Up yours. May a million fire ants bite the soles of your feet. One.At.A.Time.

To every grant giving foundation that only considers applicants "gainfully employed prior to diagnosis," you're a disgusting bunch of hypocrites. I already lost my income when I became disabled. Every month is a fight to pay the bills and still have money for food, co-pays, gas. I busted my ass to get out of the hole that 4 years of no work created before I got SSD. And now I'm sliding back into it. And yet, no 'loss of income' means no proof of increased or even the existence of financial hardship??? Stupid judgmental bitches. I already had nothing left to lose. NO SAFETY NET.

WILL I SURVIVE ONLY TO END UP HOMELESS? PERHAPS A HOMELESS HOOKER FREAK SHOW? That'd be a niche market, I bet.

Family: Why is cancer a big deal? Because it kills.

Your lack of support already was epic. But somehow, you've found new lows. New blows. New nastiness. Even my therapist is impressed (in all the wrong ways). You did help prepare me to do this on my own. It's been my way of life - my normal - since I was a child. BUT I CAN'T BE A ONE WOMAN ARMY FOREVER. I AM SO TIRED. FRUSTRATED. ANGRY. DISGUSTED. LONELY LONELY LONELY LONELY LONELY.

Cancer team: You say you like that I ask questions. Good. Now please start answering the hard ones. "I don't know" is a legit answer. Try it sometime.