STEAM ROOM FOR ANGER
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I am a veteran and eligible for care through the VA system. Care was fine when I was active duty. However, my experiences with them as a veteran have not been at all positive and I would only go back to them in some extreme circumstance of not having any medical coverage at all.
I know they have been taking a lot of steps to improve things, particularly for female vets, but right now I trust them about as far as I can throw an elephant.
JJ
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Great discussion. - In the USA the medical system in its fully glory drives the economic system, foremost. Insurance, prescription drugs, medical professionals, hospitals and clinics and university centers, and all the rest. It is our product and service that grounds our economy. At the expense of the people and their health. The oath, first do no harm, that is what needs to drive the product and service, but falls far short. Then the patient needs more and more and more.
LOL which takes us to Marijen's link. http://www.patient-safety.com/blacklisting-patients.htm I can't wait to read that completely. Dinner now.
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McCain voted it down as did Paul (for other reasons) and the senator from Maine (forget her name) is leaning on no because of what it does to MediCaid. So looking good that this bill will be killed.
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You would think after what, 3, 4 times repubs are trying to bully the shit bill through that they'd get a clue.
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About health professionals that really don't know as much as they think they do (need training?)... recently, I went in for an infection. That same practice handled my hysterectomy 7 months before. The nurse asks me when my last period was. WHAT???? I just looked at her and said that I'll wait while she reads through my file (on a laptop, no less). Oops! She says. ROFLMAO!
About equifax: There are recommendations to request that a fraud alert be placed on your file. You only have to contact one of the three and THEY have to contact the other two fairly quickly, day or two later. Considering the breach, a 7 year fraud alert would be in line. I'm going to do that as soon as I can find someone to answer the phone.
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Remember the commercial of the lady who cut her hair and now she said she looked like a squirrel. It has happened to me. Hair in shock, awaiting recovery.
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BBlues- did they say if it is easy to unfreeze if you need to apply for a loan or something?
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I'm going to do the same. Last year someone got a hold of my debit and went on a shopping spree. They were dumb enough to use it through a pay pal account and I don't have one so it was fairly easy to get my money back but dam scary to check my account and all my money was gone
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Today at grocery store ran into fellow who lodged at cancer clinic while I was there. Hi, how are you, you look well, you have hair, big hug. His wife was with him and when he asked me how I was I answered honestly, that my body is healing but my mind is sort of messed up, trying to go forward with the spectre of cancer hanging over my head. He nodded knowingly, this truly is an insider joke, I don't think the Undiagnosed can truly have a clue, not that they don't care. But there is that moment where your world tips on its axis with the words, it is cancer.
Immediately, IMMEDIATELY upon my saying that his wife pipes up with the Posi-talk. "But there have been such advances in treatment and so many people are surviving this and that's what you have to focus on and go forward believing that you are cured."
OH my god. Shut up. Seriously, shut the F up. I KNOW I have to go forward with a positive attitude. But knowing it does not automatically drop it into my lap. I KNOW there are advances and yet I still know that breast cancer has some pretty horrific statistics attached to it. I KNOW all of this.
But seriously, we can't even voice our true feelings without being smacked down with a dose of politically correct puking positivity. I am not allowed to state My Truth without being corrected. Like, talk about editing out a person's experience and feelings. This happens to me ALL THE TIME! I have been told that I have to be 'more positive'. Why? For whom? For the sake of everyone else around me?
More and more I feel alone with this stupid effing disease because there is a time limit and word count placed on my feelings and my struggle. No, I do NOT moan about this all day every day. I get up and do everything I always have, god forbid that anyone be inconvenienced with me being out of commission! So I carry on, no matter how I feel or where my head is at. But I feel a tamoxifen induced hormonal shit kicking coming to the next person who tells ME how I have to feel about MY cancer shit!
I am TRYING, everyday, to talk myself into getting my shit together and carrying on. I carry on even when my shit isn't together. I felt bad for that fellow who didn't say anything as his wife gave the positive speech. I understand her fear and actually felt more compassion for her position than is coming across in this post. But all the while she was talking, he held my eye. He just looked steadily into my eyes. Yup, Buddy, I know where you are. I know where you are. May we both find our way and our health and our lives again. It was good to see him.
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I feel the same runor, which is why my fam doesn't know. My bro who does doesn't say anything other than best wishes, love and peace. Even if someone has/had cancer and are saying that, some of us don't like to hear it esp because WE KNOW. Thankfully my group of those who know are max 5, with bro being the only fam member. Others don't say shit like that. Just support, if there's anything I can do, if you need an ear, best wishes, peace and love. That's it and that's perfect.
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Being open about your symptoms and feelings is not being negative.......it is being honest.
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I will post this again (posted it a few times on other threads). When I first saw it, I felt a strange vindication. I still send "well-wishers" the link to watch it.
Unfortunately, Holly is no more. But I hope her words will last for decades to come.
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I *hate* the be positive speech. And, get it all the time. I hated when people told me to "be positive" even before I had BC!!! Just such a stupid thing to say... My way of handling stuff is to face it and be realistic and express my feelings.
That's why - I only told a handful of people about it. Because I can't stand the be positive crap and people asking me "what stage" that I was diagnosed with. Like - anything will change - if I tell them. I hate talking about it and only want to feel normal.
My MIL - lectured me about - the "importance" of telling the *whole* family. Anyway, she said because people "want to help". It's my call, my business and my personal situation. That made me wish - that I hadn't told *her*....
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RUNOR - You are so expressive, why wouldn't someone want to sit and listen to you except they don't know how to really listen. I for one can only agree, been there. I am asked all the time, How are you as I am gingerly making my way through a restaurant. I was in a wheelchair then on a walker, or Hubby's arm. Still am half the time. How does it look like I am doing? But they ask and I now mostly say, You don't want to know. Because I really believe that, they have to rush off anyway. The ones who really want to know pull up a chair and say "Tell me." So there are a few. My sister. Hubby. A few waitpersons we know very very well. I don't know what I would say or do if I got a positivity speech.
Runor said, "But seriously, we can't even voice our true feelings without being smacked down with a dose of politically correct puking positivity. I am not allowed to state My Truth without being corrected. Like, talk about editing out a person's experience and feelings..... I feel a tamoxifen induced hormonal shit kicking coming to the next person who tells ME how I have to feel about MY cancer shit!"
MONEY COCOON - Our account was drained back in 2010. We got the cash back. But they were taking out $2 to $200 a swipe and then a duplicate in a town nearby so double dipping. What we did ----- we opened a cocoon account. That account number is only known by us and the bank and anyone depositing a SS or pension amount. So all the big money is in there, never used outside the bank transfer, no debit card, no payments out of it. We transfer to the account w the debit card and that way the money is 'safer' at least. But I prefer Paypal for everything if I can get away w it.
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My daughter and her dog are now in the UK, just hours from being reunited w her new husband. As far as I can tell all has gone well w her dog being accepted into the country, one huge concern. So relief is here. I will not miss all her aggravating and sometimes (often) selfish ways but I will miss her. The house is quiet, we slept in after watching progress from flight to flight during the night. And hung out in our jammie clothes. And ate cereal. And eating dinner early with movies. It's like we are reclaiming our domain when a visitor is not here. Good news is she did as I asked and completely packed, cleaned the sunporch completely. Bad news is there are many loose ends but good none of them are for me to deal with. And I won't.
Wish I could breathe decently in an AC'ed building. Cough endlessly, Looking ahead to the break in weather tomorrow and hoping it is for the rest of autumn.
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Responding to runor's (typically elegant) mini-essay about the positivity stuff. I went to a meeting of stage iv bc people, to try and process my fear and dismay in a place where people would understand, and a first-time attendee exhorted me to "Be positive!". I turned to face her squarely and then quietly demanded, WHY? You could feel the silence in the room, then the social worker stepped in (with a nervous laugh) to try and smooth it out.
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How funny Shetlandpony! My mom is into this be positive crap for every single thing I complain about. I know she cares but there's not much worse to say if you are trying to show you care. Just listen already and wish me the best. Being/staying positive does not affect what may come! Let me express my fear/concern in peace. Acknowledge that this is real for me. That's all I want. Ugh.
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Good one, Freya.
Yeah, and that shouldn't be too much to ask, Artista.
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Okay...I have tried to stay out of this, but I have to chime in.
EFFF all these "be positive" people!!! EFFF them in the wazoo, and then EFFF them in the wazoo again with a jagged piece of glass.
I have just come out of the worst, worst, WORST month of my life. I am no longer Stage IV metastatic, I am now END STAGE, people!
I have TWENTY PLUS effin' brain tumors in my head now, as well as leptomeningeal activity (cancer cells in the fluid surrounding the brain, which is VERY difficult to treat). I was only Dx'd Stage IV from the get go a mere SEVENTEEN months ago. I thought I had AT LEAST another year left b4 the shiz got really bad. Well, lucky me, the shiz just got really BAD right now!
The WHOLE BRAIN RADIATION TX I just finished last week are only gonna buy me maybe a couple more months (if that). The two biggest tumors are 4 cm X 2.5 X 1.5 and 3.5 cm X 2 X 1.5. How much do you think TEN measly radiation sessions shrunk those two mother-effers down? These two biggies are in the cerebellum, near he brain stem. They are INOPERABLE!!!
How in the HELL am I supposed to BE POSITIVE with all this literally hanging over me?
Come on, PUHLEASE!!!
My days are literally numbered now. My MO has already made an appt with palliative care for me. I go in tomorrow, and we will discuss pain mgmt and up and coming HOSPICE options.
I have been told to get "my affairs" in order because some of the tumors are bleeding a bit. Any one of them could hemorrhage out at any time. Seizures and black outs are to be anticipated.
Oh, just be POSITIVE, Lita. You can DO this!
Bullshit...and bullshit again, I say.
I am absolutely devastated. I am angry, and I am in despair. I had absolutely NO IDEA that things would escalate this quickly. The tumors in my spine, organs, and muscle tissues are hurting like crazy now because they can't have you on chemo and rads simultaneously. The Taxol infusions will only buy me a couple of months as well.
Ladies, I am dying, and I know it. The angel of death has put his foot on the accelerator.
Some how, I have to wrap my tumor-laden head around all this. It is NOT easy. There is NOTHING POSITIVE about any of this.
Oh, and I finally completed my "Death Binder". It has all my notes for my memorial, my obituary, people to notify, contacting Social Security, which accounts to close, etc. I also made the final payment for my niche at the mausoleum, so I am ready to go at any time now.
All I have to do is wait it out.
Trying to be positive is NOT an option.
I have to take it one day at time....no, strike that...one HOUR at a time.
It's really effin' easy for these people to say "Be Positive" when they don't have TERMINAL cancer.
They will NEVER understand until it happens to them.
Thank you to all of you for posting here.
Lita
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Naughty Freya! I laughed so hard I peed a little.
I really, truly think those cheerful, wide eyed 'positive' types are scared shitless. Hell, we're all scared shitless! Fear of dying waaay before I'm ready to, that is my big fear, my big mourning. But those people who cannot even allow another's sadness or anguish in the room without smothering it with their positive blanket ... those people are terrified. Too terrified to give voice to their terror, so terrified they have to paint it pretty with positive pink. Do not SAY the word fear, we are trying to snuff out fear, we are trying to go forward CERTAIN that we are cured, avoiding with vehement insistence the vast numbers of dying women. They are not real, they are not real, they are not real. If we DENY the fear and DENY the truth and don't let anyone else speak about it, then we can bend the world to our rigid view. If I stamp out every person who talks about a spider I have, in effect, stamped out all the spiders.
WRONG.
I know I have to arrive at a place where I take a deep breath and say, I guess I have to move forward. That is not 'being positive'. That is effort, adulting, big girl panties, courage, determination. It has NOTHING to do with being positive. I will move forward when I have made my peace with the burden I shoulder which is having my death shoved right in my face instead of floating in the back. Awareness of my potential early demise is a roadblock I have to work around. It is not going away. I have to employ every skill I have in my personal kit to find a way to deal with this new truth. Thinking positive is not, for me, problem solving. For me, it has more to do with true grit and balls of steel than perky positive. To me, positive is people pretending there is no problem. But there is. I have breast cancer. I might get it again. At any time. No matter what I do. And it might kill me. And I might not live to see 60. Or 55. Being positive does not make any one of those things any less true.
So. I will move forward hopefully, slowly. I anticipate that I will make peace, as much as possible, with my new situation. It's not the best situation but it's a situation I have to make the best of. And I will. Just not today. I need time. I think peaceful acceptance will be my goal, not pointless positivity, which is, for many, a fancy wrapper on terrified denial. I feel bad for people so scared they have to bury everyone in a layer of positivity and remove the voice of those who are struggling. If you can 'positive' yourself to recovery, god bless you. But some of us soldier on in a more humble way. No politically correct positive. Just one foot in front of the other.
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Oh Lita, so so sorry to hear this. I will keep you in my prayers. Gentle hugs.
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Lita these positive people can go you know where. They are not dealing with what you are going through.
God owes you one, it better be pretty nice in heaven.
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Lita, I'm so glad you let it all out. I'm damn angry too. I'm sure it is only the force behind the anger that is keeping me going. I started a new chemo Monday, it knocks me out basically. I wake up take my chemo, the process takes about an hour, go back to sleep. Late in the afternoon I wake up and do the process again, go back to sleep. I'm awake about 4 hours a day.
When cancer progresses, it does it fast. It leaves you no time to get your head around what is happening. That is disconcerting. When your MO says, if this doesn't work, there is nothing else to try, you will have a matter of weeks, that is also hard to get to your head around.
Anyone who tells me to "think positive" will get a punch in the face, or hit over the head with my walker.
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Lita,
Thank you for your candor. Love your style with guns a blazing - always.
I wish you a peaceful, gentle exit.
I wish your loved ones peace. I got tears in my eyes reading what you wrote.
I'm so very sorry.
Runor, if you are for hire my, would you be my spokesperson? So much more elequent than I could ever be.
My regret, making chemo and surgery look way too easy. People have no idea about the brain fog of chemo pause, Tamixifen brain fog, vaginal atrophy from both? Yet, I'm supposed to be GRATEFUL that I am early stage 1A and hormone positive.
I was a champ through treatment. The shitz I'm left with is what I struggle with and no one understands.
And the guilt that it could be so much worse is a horrible.
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Lita, so sorry to hear. Keeping you in my prayers for easy transition when your time comes.
Washington Hospital here in Fremont oncology center has 2 oncs that are affiliated with UCSF. Dr. David Lee's specialty is breast cancer.
"UCSF - Washington Cancer Center
Washington Hospital has established a new affiliation with UCSF Health to provide oncology patients with access to the latest cancer research, technology and treatment in a comforting and convenient environment."
http://www.whhs.com/Services/Specialized-Programs/...
Best to you. xxx
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Lita, I suspect that the words you write are just the tip of the iceberg. There are times when language fails us. Times when words and sentences cannot convey the anguish or anger or terror. When I was first going through this, worse than the physical poking and prodding and squishing, was that trip to hell my brain took me on. The mental suffering. The laying in bed and not being able to think any good thoughts. One of my fears now is that I will have to go through that bullshit again at a later date. And here you are, Lita, reaching out to us all from that darkest place.
In this moment, words fail me. I have tried to find the words to convey the profound effect reading your posts has had on me. What is it that I feel when I read about your worsening situation? Sadness, yes. Anger at the medical community not being able to fix this, yes. Grief for your family and friends, yes. But that still does not say it. The closest I can come is respect. I feel a deep and clear respect for the fire you have stepped into. You are in the lion's den. You are calling out to us, telling us your story, shouting out what you see and feel. I know when I am in the presence of immense bravery and fight. There is nothing to do but watch in silent awe and deep respect as you move through this last stretch.
I am far away connected only by this glowing screen. But in my heart I have felt the fear, I know the monster, I hate his guts, he has you now, but oh my god you are handing out one hell of a shit kicking on the way! If I were in the room with you and heard you speak the words that you wrote, I would bow my head and be silent. Your truth fills me with respect. You have given much, you mean much and you are lifted by the spirits of so many, many women. Lita, please accept the gratitude, awe and wordless witness that I offer you. Bless you.
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Thank you, runor.
Artista, I have heard about Dr. Lee. He is well respected.
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seachain thank you for posting that. I am sorry to hear she is no longer here. People are dumb when they say things like that and too often we don't speak up.
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Wow, Freya! A picture says a thousand words. Don't know whether to laugh or scream. I guess it's a scream.
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