Bonfire of the Goddesses
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Bcz of schedule change since Hubby took different position aat work to be home w me more : ) we had to get an appt to see onc today and did.
Yes, axilla right nodes cancer. Left neck node not cancer. Proposed surgery, then rads, then chemo test onco test I think, then chemo if that would be what works for me then Arimadix for 5 yrs. Said that could be the cure for this, he actually used that word. Cure? As for the innovative tx I asked about when I first went there, he has none, he has none, he strung me along with 'we will talk about that when the time comes, let's take one step at a time' and I was too frigging polite to punch him in the face. You don't even need to know the details, he is an ass and I am on to deal w this in my own way on this bc journey.
Onto the fire. Ignorant doctors. I have found a gem of a chiropractor and have my integrative medical dr pathologist.
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Diane - So sorry you are having to do this again. Sounds like you do need to punch that asshole in the face and tell him to get a grip. I will volunteer to do it for you - that's the kind of mood I am in today.
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Can I be next to punch the doc in the face?
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veggy - LOL!
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essa --sorry rorthe rotten news-----L&H&P's sassy
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(((Diane))) It just sux that you have to think about these things again. And it makes it worse that the doc seems to have ignored you and now wants to just move on.
Wishing you the best possible plan and the cure. No more BC ever again.0 -
My MO reads my history on the computer right there while I am sitting on the exam table. She has no clue who I am.
I stopped taking Arimidex in Dec. because I had scary angina....she was out of town and never called me back. Then when I went back to her in Feb., she spoke to me like a child and said "You haven't been taking your meds. Now we must find something that you WILL take" as ifI were being rebellious Did she notice that I voluntarily put myself through a heart cath 4 days post rads, to make sure my angina is not cardiac induced - just so that I could go back on AIs? (nope)
Into the fire with bad news and docs who neither listen nor care.0 -
What the hell is with all these medical oncologists? Do they think they are super human know-it-alls? Do they think they are immune from getting cancer themselves? I hear there are good ones out there, but the majority seem to be total meatheads.
Bah! Into the fire, all meathead medical oncologists!
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Into the fire with these stupid surgical drains that pop open and leak all over my clothes. Two of them no longer keep the suction.
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Veggy, call the on call person, there is away to make them work, but that falls under "medical advice" out of general knowledge--ergo i can't advise. BUT an call person is on call to sove problems outside of office hours .Hence ON-call. They should be able to direct you . I can say that in the office they can change the bulbs to new ones, if they are malfunctioning,
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veggy - WTH?? There must be a hole in the tube somewhere. That can be fixed rather easily. I have a small tear in one of mine and my PS fixed it right in the office. SAS is right - try getting in touch with an on call person.
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DH had a set back. Ended up back in the hospital Monday nite and has been there ever since. Keeping my fingers crossed that he will come home tomorrow. I expect him to feel better than he has been feeling during the last two years. He better feel better after all he's gone through! But I will tell you who is going into the bonfire. The TWO police officers and EMT who took him to the hospital! The DH needed to go back to the hospital. After arguing where to take him...THE POLICE OFFICER DRIVING THE AMBULANCE TOOK THE SCENIC ROUTE TO THE HOSPITAL.Why? BECAUSE THAT'S THE WAY THE GPS TOLD HIM YO GO! After we got him there the EMT told me.... NOT TO MAKE IT A HABIT OF MAKING THEM TAKE HIM TO THE HOSPITAL THAT I REQUESTED THEY TAKE HIM. Meanwhile, he was stable and I was threatening refusing the ambulance until they finally agreed! I just wanted to strangle all of them! I spoke to my brother-in-law, a retired police office and former EMT and he told me they were unprofessional! Today, while I regroup, I am watching them burn!!
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VR - What a bunch of idiots. Since when do ambulance drivers need a GPS? Don't they know where all the hospitals are? Praying that DH comes home tomorrow and wishing him a speedy recovery.
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Jo... It was one of our best hospitals!!! The cop couldn't even find his way out of my street... I was following them wondering where the heck we were going.. I could have easily shaved 5 minutes off the trip! It was positively INSANE! And... While they finally agreed to take him to THAT hospital..THEY REFUSED TO TAKE HIM THE EXTRA TWO MILES TO THE HOSPITAL WHERE HE HAD HIS SURGERY! Even though most of his doctors are affiliated at both hospitals, all week long they kept asking why we didn't go back to the hospital where he had the surgery! I am telling you! My blood pressure!!!!
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VR- that's awful!
I found out that the sticky tape around the tubes came lose. I used some bread dough around the leakand laid out in the sun to help it to help it raise and seal the leak. just joking. We used some tape that I got from thehospital nd taped around it. So far its holding up.
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Kingir- have you tried an osteopath? the one I go to has really helped to realign me...the chiopractor just seemed to be making it worse but WOW....can't believe how much better I feel all over. not just my lower back and foot
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VR - sending tons of positive energy for hubbie to get better and come home tomorrow!
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Two of my four drains went into the fire this afternoon. I'm halfway there!
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Veggy... The little things that make us grateful... Congrats! Hope you feel better with each passing day!
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Veggy - Congrats - hope you get the other two out real soon. Its the little things that make us feel better.
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VR, hoping for the best for you and DH.
Veggie, hang in there with those drains - you WILL get rid of them soon!
For some reason, this thread got deleted from my favorites, so it took a bit to catch up with all of you. I am so sorry to hear of the many difficulties with the MOs.
Today, I am throwing in my anger at my MO. I have been angry with her for recommending the wrong chemo for me based on my personal fears and lack of fears. I told her on my very first visit that I did not fear death and I don't fear death from breast cancer, but I was terrified of neuropathy and cardiomyopathy, and yet she recommended TC as the treatment of choice. 18 months later and I still have the neuropathy that keeps me from doing much with my fingers and hands (it takes forever to type these notes). Today I asked her, "IF we had a do-over, what would you recommend today?" and she immediately replied with a totally different chemo regimen, one that I would have been willing to do, but we will never have that opportunity. The damage is done. I have been very angry with her for a very long time, but also angry with myself for "being a good patient" and going along with the initial recommendation, ignoring what my own heart and mind were telling me. Today, I let the anger go. She is a good person, is truly sorry for what these drugs did to me, for not taking me off the drugs sooner before they had done more or less permanent damage. It is time for me to move on. She cannot help me, no one can help me, I have tried many meds that just gave me more SEs, accupuncture didn't help, not much left. So I cannot waste any more energy on being angry, I need to focus on finding more joy. Into the fire with my anger, and may it be the beginning of true healing.
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Linda - (((HUGS))) Sounds like you have taken a giant step in the right direction. I can't imagine what you are going through but just know that you are in my thoughts and prayers.
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Veggy, LOL over the bread dough....too funny. Congrats on the burning drains;here's to getting rid of the others.
VR - hope your DH will turn the corner and get home soon.
Linda, I lost some threads from my fave list too....hard to find them. Not sure why it happens. So not fair that you have had this experience...hoping for healing of the long term effects you are dealing with.
Wow, the fire's getting hot.0 -
....I can feel the healing rising from the smoke..It's permeating in the air...
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Veggy you had me going a sec w the bread dough and sunshine.
VR just when you needpeace to heal its more crappola, idiots. One of these days taht words will come out of my mouthand the eother person will stare at me like I am the one insane. It's on the tip of my tongue.
Did I say punch/ The itch I had during the onc appt was to kick - KICK - him in the face. Wondering if my Birkenstock would fly across the room, being a sandal, but it was quite substantial for the task if shoe met nose.
The onc, the main issue we had w him was that he knew nothing. He was even so assinine as to say about the punch biopsy that it needed done, but he was not listening to me, I have LE, it maade arm swell x2 of the other side. There could have been another way, if we talked it out, like I had an excisional biopsy on breast mass, no sense poking the bear, just take it out.
What gets me now is Hubby and I were clear as was onc, we were to take our time to make decision on tx. But I get calls from a rad consult appt and the bsurgeon appt (oh and onc said this bsur was a specialist, only breasts, nodes) but he is not NOT, he is general, I checked. And the oncotype test called. All these are referrals that the onc gets a comm on I do believe. So that gets to me too, I canceled all of them and am going for a consult for lymph node RFA and or cryoablation tomorrow. No referral to the onc, that is for certain. Now to figure out what to do w breast bcz they want to do an mx, as usual, though nothing was on US or PET CT.
Onto the fire today, Ebay safe draft feature which does not work. So much for the new item onto my cancer fund for alt tx, lost time, so now I play.
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d eSSA----crappola
Veggy congratulations, but you had me going>>Iwas thinking SHIT now shE'S going to get a YEAST INFECTION.
lINDA----cRAPPOLA TOO.
VR---I don't know if I can tell you everything you need to know about the screw up. There are so many. It will be long, sorry folks, Could be useful info for anyone., but applies truly only in VR's DH's case.
1. Letter outlining problem to the police chief, chief in charge of EMS, >>>Could copy to councilperson. Most important is to the Medical Director of the EMS squad. You will need supporting documentation fromDh's doc managing his disease. Perhaps a statement from your lawyer describing what action that will be taken should he be taken to the wrong facility. More on this later
What they will tell you is that if the patient condition falls in the list of whats called "Life or Limb Threatening" They are required to take the patient to the NEAREST APPROPRIATE FACILITY" Translation...
.All EMS districts create L/L list. They basically, take a list and copy it from another district. Usually very successful districts that have stood the test of time in years of experience in EMS.
Neartest Appropriate facility I.e Major trauma may bypass multiple hospitals to get to the trauma center b/c a non trauma center may not be equipped to even do the most basic stabilization in multi-systems trauma. Burn cases can by pass to nearest burn facility.
Sorry had to submit undone b/c machine went kafluey. continuing to write so check back for completeness
Your unthinking police/EMT's not knowing the uniqueness of your husbands condition, b/c of his presentation to them >>DH presented as requiring to be taken to nearest facility. Not listening to you at all, but following their Standard Operating Protocol. In DH's case the APPROPPRIATE FACILITY IS THE FACILITY THAT CAN BEST DEAL WITH HIS CONDITION----B/C HE COULD BE KILLED BY INAPPROPRIATE MANAGEMENT.
This is not going to be easy to get things changed, but it can be changed with your due dilegence VR. Refer to above letter. Once you have perfected(made up the case letter) the document. Have lawyers letter define action, if a decision is not rendered to allow your husband to be taken to defined hospital of choice and that if his condition deteriorates b/c such request is supported by his specialist. The lawyer should be able to include civil actions, but more importantly CRIMINAL action. The lawyer may have trouble finding case precedent. But lets look at worst case scenario >>>EMS/ POLICE/ MEDICAL DIRECTOR notified (do it by affidavit & certified mail)>>>it then goes before a committee>>they produce a response>>>You are given a document specifying X facility which Dh would have to have with him at all times.
Case scenario:EMS is called b/c of need to your home or accident scene , you present document that states Dh is only to be taken to X facility if he presents with the following_________.(key unanswered question is "does he need to go to that facility for anything/everything i.e are they prepared for multi-system trauma?) Responding EMS unit refuses to take him to specially identified hospital and he should die as a result. That you will ask for homicide Murder two for depraved indifference, b/c the document presented at the scene described what was agreed to by committee and duly signed by the Medical director of the EMS squad.( the truly controlling individual)
Once document is approved, require that all EMS squad members be inserviced and that you want a copy of all personnels signature that they have received training. (they will refuse this, calling it internal and priveleged).
The fight is going to be "If we do it for one , others are going to ask for the same thing". The difference here is again the uniqueness of DH's condition which will have to be proved by you and your doc. I remember you quoted the stats when you described his condition. He is so rare, the closest nearest facility could kill him b/c they don't know his uniqueness.
Alternative is for specialist to write an allgorhyhtm that defines actions to be taken under presenting problems. Actually, also, should have at Xfacility, in case Specialist not immediately available.
Many people reading this are going to think this missive is overkill, but many pages ago you described the many times DH experienced serious adverse complications b/c of mismanagement, even when they were told such and such would harm him.
Also, include route they should follow to the facility.
There was a time all responders were required to learn the streets and routes and were even tested ---It was part of rookie training----so much for the old days------5 minutes is HUGE in an emergency.
VR good luck----I'll PM you my phone number Sheila
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SAS... Younger DS son is an EMT (and a rocket scientist...really). And I know what the protocols are. I kept asking if he was stable and they said "Yes.". So I told them if they wouldn't take him to one of the three area teaching hospitals (where all his doctors had privileges) ... Then I wanted them to put him in the car. Those hospitals, while 5 miles further... Are actually closer to my home because there were fewer lights. And had they gone the correct way and not been guided by GPS we could have been there sooner at 2 AM when there was no one on the roads!!!
He's home now.... After another week in the hospital... And I am still pissed. I don't have the strength to argue YET. But I am very active in civics and I am not finished yet! 29 years of living in my community with a husband whose health is precarious at best and I NEVER had to call 911 before and this was the best they could do???!!!! BURN! BURN! Burn!0 -
SAS- So that's how you get a yeast infection?!! You have me laughing.
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Oh Veggy---i thought you had a new invention.lol
it seems like everyone hates their onco...well i fired mine too.my D level went down and she never sent any copies to any of my drs.....bitch who is supposed to be the best....yeah right.most of them dont even know shit about LE...
VR---well you surely went to hell and back with DH...Im sending you healing thoughts and prayers.AND HOW ARE YOU BESIDES ANGRY????
On the hottest day of the year Sat.104 my AC dropped dead....talk about hell i was there...im fixed up now but i forgot how much i really hate the summer.
i smell smoke!!!!!!!its the white coats that say onco on it....burn you bastards.Ya lost quite a few perks this week.maybe even a trip to the Islands...We all know how that works....
(((((((((((((((Joan))))))))))) I miss talkin to you.....my apt.was soo hot i couldnt get near the puter....BUT IM BACK! tryin to catch up.
hugggggggs and keep the fire burning.K
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Veggy>>>again you are teasing me, I won't bite on that bread. But did you know before yeast was avaibale That bread was put on a open area to Catch natural yeast. Yeast in apacket was a boon to all bread makers.
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