STEAM ROOM FOR ANGER
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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.
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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~
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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
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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.
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Micmel, back at ya!
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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!
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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.
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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.
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Might have found my dream job. Finally starting to feel like things are heading in a positive direction after cancer hell and then getting fired.
Well now I find out this office is moving and my commute will be 50 miles each way. I'm already struggling with fatigue as it is. No way is this gonna work. I'm not so much angry as just devastated. I think more and more I should have just gone on disability after my initial dx.
Just highly beaten with life at the moment.
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Speaking of commercials, anyone see the dancing dude on Toujeo's epi pen? Sitting at his desk, walking through the office, mowing his lawn all the while a big smile on his face and dancing. Yeah, I'm sure that's how it is when you take that med. Most of us realize it's just a dumb commercial, but some may not and actually think one se is you'll feel like dancing!
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Mimi,
Your experiences (several posts ago) with Apple and with the elevators at your apartment were HORRIBLE! I hope both issues have been resolved
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I posted this to DD's Facebook page from another person's FB post. She absolutely loved it, and I think it's appropriately directed to all the agencies, organizations, social service programs, etc. that piss us off. (I'm sorry if the profanity offends, but I'm posting the card AS IT WAS WRITTEN):
I love the prissy looking Englishman pointing his finger to the left.
You can imagine your favorite Englishman (Richard Burton, Jeremy Irons, Anthony Hopkins, or Gordon Ramsey) telling these people to go fuck off.
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From an other ex pat Brit - I love this too!
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Rant on healthcare in general here and mass marketing by big pharma. Raises costs of all meds for everyone if you ask me. Then when you need to fill a prescription you've been on for years you have to get "pre-authorized" and it takes longer to get your meds. Meanwhile the bozos in Washington just fight and fight and argue and all the patients suffer.
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Just so frustrated and upset at this point. Crying due to frustration.
I have a younger brother. Though he was not particularly trying to, I found him hard to deal with today. Being Stage 4, my time is limited which I am acutely aware of. In one breath, my younger brother reminds me that my death could be anytime. In another breath, he is asking why I am not working right now. He thinks I look fine. He even was critical of my head. I keep it bald because my hair did not come back all the way after my brain radiation. He assumes I just want people to look at my craniotomy scar. If I happen to mention cancer, he assumes I spend 24 hours a day thinking about it. It is like I cannot mention it at all. It is just so stressful on me. I even want to see him anymore. I have been crying for a couple of hours. In short, whether he means to or not, he makes me second guess myself and feel badly about myself. I have a mother who keeps telling me to calm down which is not helping. I do not put her in the middle, but need to be left alone to deal with my tears. Nice to be able to write it down here
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^^^ While not the same as stage IV dealings, I can relate to fam not getting it. I have generalized anxiety which has put me on disability. They are a big part of the prob. I see a psychiatrist every 3 months for re-assessment and meds refilled. Just getting out of the house is a task. They know all this. It's all pre-cancer. But alas you tell them then they go back to being Dr. Phils. I'd rather they just shut it. For that reason I have only email communications with anyone who wants to keep touch, mainly mom, dad, bro (who isn't the prob and the only fam that knows about my cancer stuff). I've been locked up before. Once you go there chances are higher you will go back there. So I'm doing what I have control over to keep myself from bottoming out again which means take my meds, see my psych and stay away from people who trigger me making my anxiety worse. Just got done responding to my dad's email about how come I don't see my mom only for a few minutes when she comes to visit her family for 10 days 30 min from me for a few min. Sometimes it's better to be alone though I am blessed to have 1 whole bff who lives near me, but she's moving in a couple years to be near her dau in a couple years. Not sure what will happen to me after that. When it gets much I start wishing I'd just go already. Not much to live toward but so far trying to keep even keel and my pet guinea pig helps.
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Mara send your brother a copy of what you posted, he needs to hear what you are saying. Also give one to your mom . Your well being is more important then their hurt feelings, you should be surrounded with love and comfort , not criticism.
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Freya....been thinking about this a lot. I think I over reacted just because of the sensitive subject matter. I'm very passionate about children, especially terminally ill children. I also forgot the title of the thread. I agree in this thread you should be able to say anything you want without judgement.
Lita...I apologize. I didn't mean to offend you in anyway. This should be a safe place to vent. I wish you the very best. Be well
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God bless you all, None of this is easy for any of us.
Big group hug!! But don't breathe! I have a nasty bug 🐜!!!!! Hang on tight to each other. Sometimes this place is all we have to get it out!! May everyone have everyone in their lives that annoys them to any extent to leave us alone today. May we find something small to smile about each and everyday. Oh and the Ibrance commercial is on with the bouncing Julie. Speaking of parama commercials. I am going To choose to laugh at the timing of this Commerical! Hugs to everyone who has ended up in this shit stew! ~M~
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dtad
Graciously said....
Wishing all of us a calm, peaceful day with no ANGER - or at least as little as possible
but if you need to, vent it!!!0 -
Thanks artista and Lookinforward. I need to stop being over critical of myself and caring what my family thinks. It would make it easier to deal with things. We are close 98 percent of the time, it's just that two percent that is an issue. I also believe my emotions can be amplified with all my brain radiation which is difficult. Today I feel much better. I really appreciate what you both have to say.
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Mara~. It's a normal thing to do. I am feeling like such a burden lately. It bothers me. Some days I just don't know how on earth to even fight another day. It's so complex dealing with cancer. I think you're pretty amazing along with artist~good~lookingforward~ nice words.
Freya~ always makes me smile !
Dtad~nicely said! Also it is a very tragic thing to see those children dealing with things adults can barely handle. The entire cancer world is brutal. There is no other way to say it. I am an emotional nightmare. I would cry at the closing of a Kmart.
Peace and strength to everyone ~M~
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I am an emotional nightmare. I would cry at the closing of a Kmart.
You gave me a great well needed laugh with that one today. Thanks.
Blessings x x x
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.....forgot to add Micmel. Hope you feel better from your 'dose' soon......
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New to the rant page ...just have to let go for five minutes........2015 ...DIL 28 year diagnosed stage IV Bowel cancer, DD dx with adenocarcinoma in situ of cervix..... I was Dx with BC..see below..... Hellish year ..driving 1000k, between AC doses to visit son and DIL ....she passed in August that year.... Daughter wedding two months later 1000 kms the other direction...me with pencilled in eye brows a wig and totally exhausted. 2016 exhaustion ..numb feet ... Chemo brain... Running family business office....son off the rails for a while... Late 2016 climbing markers... Feeling in pit of stomach something wrong.... PET scan jan ? Something on R kidney....... Told to rescan in three months.... February go for portacath flush very breathless.. Nurse wouldn't let me leave straight to emergency... Multiple pulmonary embolism in all four quadrants of my lungs.....5 weeks in hospital getting blood levels right !!
Scan redone ... Lesion on top of right kidney ... Benign or cancerous a possibility.... Opted for robotic controlled partial nephrectomy .... Pathology just came back as Clear Cell Arenal Carcinoma!! Enough is enough ... I have remained positive adjusted lifestyle dealt with two years of the head tilt"how are you" in hushed tones!
I just want to scream ,...I can't believe that after dealing with numb feet from taxol ,chemo brain and the joys of AI's to now face this .....what the...
Prayers please ... And perhaps a big field that I can stand in the middle of to scream.... Now back to the hushed tones, avoidance or worse..". You have done it before so what's the worry !" Aaaaaaarrggh
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Yoxter - Wow! You have every right to scream, if you can't find a big field scream wherever you are. I usually yell when I am driving alone in the car. I have prayed for you.
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yoxter~ i am always sorry to hear of such a hard time for someone to go through. I am just beginning really a year and a half out, but straight to stage four do not pass go or collect shit!! It still seems like forever to me becaus everyday has been a new struggle!I have some major loser family issues. Not my immediate DH or DD or DS or DSS, this is the brothers, sisters, father, step monster and a few other Gems. This Is my thought on them!Good~ lol at you laughing. That made me smile too! I guess I'm a wreck.! I try so hard but am so emotional! No day is ever easy once we bathe in the cancer shit stew. I am just praying for a cure. Or.. treatments that don't make you want to crawl our of your own skin on a daily basis, throw us a bone here people!!!
Peace only today! ~M~
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Bosom, I tend to agree with you. Plus, I feel it gets patients who are on a generic drug or older less expensive drug to push for the newer one which is more expensive. I think people feel if it's newer its got to be better.
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I could not agree more therefore this applies :
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