STEAM ROOM FOR ANGER
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Yes just the fact that they have to advertise all that "feel good" crap to recruit patients is a major red flag...
mac, I am so sorry you have to put up with that attitude from you "DH". I can't imagine how you don't blow a regular gasket.
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I had a visit with cancer center of America and I have Medicare. I would think if they didn't take the governments insurance, they would be losing out on money. I don't think that they are in the business Of losing money, especially since they can slide the scale of what they charge to Medicare. I never received a bill from them ever and I went there for my second opinion. I don't have any other insurance either. They told me that my oncology department here was giving the me treatment that they would have given me. Since my care here is local, they recommend I continue treatment here instead of traveling over an hour each week or more in some cases. That would be awful if hey didn't take the most common insurance for senior citizens. What a blow that would be. I'm interested in this now. Research time!! Have a great week! ~M~
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MC doesn't pay much so many providers of hc decide not to accept it. If they have plenty of private insurance people why bother with MC? They are a pain in the butt to deal with from what my friend who's been a biller in a surgeon's office for 12 years says.
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I HATE THOSE >,+%,+~~ COMMERCIALS!!!
Whew. Ok. Hope all are properly vented.
Hey B
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This rant is about BCO. I wish I had the energy to be more detailed, but you'll have to read into it.
I wish BCO were smaller. I feel lost often times. I look for answers and search results give me lots of information about nothing important.
I've posted threads with questions that have gone unanswered, with mods explaining that I should post questions in different groups (bone mets, lung mets, tamoxifen, etc.) Well, I don't know how you ladies do it but I can never keep up in those groups. Discussions go so fast and get so splintered that I can't follow.
And if you aren't a regular poster who gets involved, responses are not a given. I am now on hospice and can really use some advice, but I feel lost on the discussion board. I've found a few groups on FB that have been helpful, but for every 2 helpful responses, you get 1 that's judgemental with wacky advice.
So.... Just venting and letting it out. I've been coming here for ten years and feel like it's failing me at the end.
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I'm sorry for your frustration but totally get it, I've been a newbie lost in a fast moving thread myself. In some cases, I feel like I barged my way in to a conversation until I was better known, lol
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Noni so sorry you have had a hard time navigating thru BCO....the threads I have been apart of...to keep up with them..I added them to my favorites and you can receive notifications to your email when someone posts...
Also when I have a question for the ladies on here...I keep bumping it...to keep it in active topics...until someone responds...
I hope one of the mods will jump in here and give you some tips on how to make your experience better on this website...with all your going thru ...you don't need this too🌹
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It's a very busy forum because unfortunately it's a pretty common disease we are navigating which never has an end date.
Tips: Don't post in threads where there hasn't been action in a long while. Those folks from awhile back are most likely no longer posting. If you are unsure where your thread should go, choose what you think is the right forum. If it's not in the best place, the mods are being helpful by saying this would receive more attention if posted in this forum type info. Use the favorite function. That's the best thing is you can do is have a list of threads that interest you including the ones you post. I have a very long list on my favorites starting from when I was first dx'd and on. I've kept them all to refer back to. If you still feel lost with it, add the email notification to it so you get an email when someone has responded in the thread.
We don't know just how good we have it in terms of the massive info and various forums on an active board like this. When my friend's sister was dx'd with pancreatic cancer, I could not find a forum like this with such details. How sad is that. Majority of us get most of our tips and info from here, not from docs and other medical personnel because they don't know like we in the trenches do.
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I've had a list of favorite topics for quite a while. Those are the ones I have a difficult time to keep up with. I guess I'm just grumpy.
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Noni~I can say that sometimes that happens, and I am sorry that you feel that way. As if having cancer isn't enough. Everyone needs to be heard. My heart dropped reading your posting. I would never want anyone to feel that way. I am holding you close in prayer. Hugs ~M~
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O Noni. (((Hugs))) Definitely wouldn't want any advice from me these days.Naturally Bb ☺️
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Hugs to you Noni (and your brainy girl).
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Noni ... I am sorry your questions were unanswered. I know how that feels. What question(s) was / were not answered that maybe we can find answers here?
Coach Vicky
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I take a break from BCO from time to time. I have to force myself to do so, but it helps to take periodic "fasts" from online forums. I don't want to live in cancer world all the time. When I'm looking for specific information I use the "search" function and limit the posts; it makes it easier (sometimes).
When any commercial comes on about little "c" (like an advert for a drug or a treatment facility) I change the channel so fast I feel like I might break my hand. I resent being pulled from a place where I might not be thinking about cancer (it happens sometimes) to thinking about it because some drug co. wants to sell Neulasta or CCOf America wants my potential business.
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Good for you claire....I switch the channel every time Trump comes on or there's a mention of some new travesty he's put his stamp on. But that's just me. I'm still a newbie to cancer...only 14 months post dx.
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My brother thinks the reason they haven't found a cure yet is because cancer is BIG BUSINESS. Think how many people would be out of work without cancer...medical oncologists, oncology nurses, hospice workers, radiologists and their support technicians, nurse navigators, cancer social workers, to name a few. Pharmaceutical companies would be out billions of dollars, and manufacturing facilities would have to shut down or re-tool for other drugs because palliative chemo would be a thing of the past.
It boggles the mind.
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So my Mo is "uncomfortable" giving my an Rx for my eye lash and brows to grow.
Really? Fucking uncomfortable was having my tits cut off and chemo.
Will be looking for a new MO.
Thanks for listening and sorry for the f word.OK I am not sorry ... I felt GREAT to write it.
The only person more pissed is my husband. Called my PS office and they said come in Friday and we will do the Rx and anything else we can help with. Why is my PS more understanding than my MO?
Coach Vicky
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Wow. Good riddence to that MO. Glad your ps is awesome.
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I don't get it. Why would your MO be 'uncomfortable' giving you a prescription for hair growth? Sometimes the inanity of this cancer situation leaves me speechless. As in, let's hack off a body part, oh and pump poison into your veins, zap you with enough radiation to cook a potato, put you on pills that will suck every last shred of femaleness out of you like the sun sucks moisture out of the desert, but hair meds? Hmm, I don't know... might be risky. Yeah ... eff off with that shit!
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I don't get it either, Runor.
And, yes, good riddance, Artista 928.Problem is I still have 9 weeks of treatment left and I doubt anyone will take me until I am finished.
It is morning and a new day. I will channel this anger into something positive.
Thanks for listening.
Coach Vicky
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Vicky ~ find a pallative care doctor. They are the medicine keepers and they are awesome. I never ask my onc for any medicine. I always talk to my pallative care doctor and she gets out her computer and issues me three months of medicine in advance, I told her about my fatigue and wham. There was a solution. Those doctors are amazing and they listen to THE patient and want us to feel normal and whole again. My onc doesn't focus on anything except scans, ibrance, and results, he can't help me loose weight. Having extra weight means the cancer isn't not progressing , I had to see my pallative care doctor to have her explain the good point about having a few extra pounds,she gives explanations and finds solutions for problems and always makes sure I have what I need. I even went to her for the script for my prosthetics and bras. She issued them right up no questions asked. Best doctor I have ever found. Please ladies find one. Then only see your onc for the check ups and scan scripts. Clearly some of these oncs haven't lost their hair and or eye brows. Also, if there is any risks or medicine interference they will automatically find another option for you. I would never give her up. She's amazing. I'm sorry you had to deal with that crap and Vicky,I don't mind the f word. It kinda makes me feel human. Knowing I'm not the only one who lets the f bomb fly!! Hugs your way! ~M~
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Vicky~most people associate these doctors with hospice and Things like that. But that's not all they do. They treat chronic illnesses. Which is really what we have for many years, It's just the entire body approach and they also deal with anxiety, stress relief and many things I wouldhave never even knew about hand it not been for her. God bless you and I hope it helps you!! It really helped me!!! Hugs ~M~
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Wow, didn't know you needed an rx for lash and eyebrow growth. I just used Latisse that I bought over the counter at my PS' office...I used it on both although it's supposed to be for lashes only. It worked, better on lashes than brows.
Anyway, what I really wanted to say is that your MO seems to have been poisoned with some over-reaching ego-power. Finish out the treatment and fire her. Look forward to that day, and it will get you through the next nine weeks.
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I can actually understand the MO not wanting to prescribe it if he was unfamiliar with it, because after all, it can get in your eyes. I would think, however, that considering that most of his patients will lose eyebrows and eyelashes, that he would make an effort to research it.
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My MO wrote me a prescription for Latise, when he did it he told me it would be expensive. He wasn't kidding, a one month supply which could be stretched to 6 weeks, cost $150.00 and insurance did not pay for it. I use careprost, it is Latise but the generic version. It cost less than 1/3 of the price. There are different websites you can find it on. Here is a picture.
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Thank you MeToo14!
Coach Vicky0 -
Oh how the saga continues ....
Oncology Nurse contacted me. Evidently my MO contacted a colleague who "avidly uses Latisse in his practice." He is now convienced it is safe and I got the prescription.
I guess my MO doesn't belive Brooke Shields.
Coach Vicky
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coachvicky, that's what he should have done to begin with. All he had to do was say "let me research that and I'll let you know."
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I went and met a specialist who deals with getting something to replace my lost, taken , cut away, removed, breast, in order to feel some normalcy when I go out into public in my clothing. Nothing hung right with one foob. It was so ugly and still is. Talk about being left deformed, the surgeons take our parts and what actually happens to them?. All I can tell you for sure is that it is really gone, I know some people don't have operations at stage four unless it's for pain reasons. Or necessity. I had surgery. A lot of it. And my front looks like a road map. I received a type of bra I wouldn't choose if I were 90 (not that I would mind being 90 one bit, don't get me wrong) but this, no one would want to wear. It doesn't feel pretty or even normal, like other bras could be. It has a slit in the one side where the gel mold slides into to form against your body. I am appreciative to have this, because if I am honest it does look a lot better with my clothing it being balanced. If you didn't know my story, you would never even guess, it looks that close. But it's fake. Not me, not mine, not anything but strange and uncomfortable and hot. Just like the freaking wig. (Although my hair is really growing back good, I still don't feel feminine at all) Being fake is hard work. So.... after much soul searching. I am going to make an appointment with a plastic surgeon. I want to see if i can have one reduced, and the other one fixed. I don't need perfection. Just something that resembles a real breast. The reason I haven't done it, is because I have a great handle on my lymphedema and I'm scared to irritate anything in that area, because that shit hurts!!!! It's very slight now and I would like to keep it that way. But I need something to make me feel like I once was. I am desperate to find that person once again. I liked who she was. Who I used to be. I don't want to have cancer anymore. I dont even know if they will operate for reconstruction on stage four patients anyway. They probably feel like I won't be around long enough to even need it. I saw my chart the last time I went in for my blood work, which is something I have to do tomorrow again oh joy! And I was reclassified to stage III A, what the hell does that mean anyway? It spread to my bones, and was in my liver, that to me is certainly stage four. Their rationale for it was, we removed the cancer from your breast, nodes and liver, it only remains in a few places in your bones. That's why. Well.... um....ok.. but to me it's still stage four. Such stress ~M ~
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