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Date Posted: 14:13:45 02/25/14 Tue
Subject: Re: Taking a break for a bit
In reply to:
Lilly, an RN
's message, "Re: Taking a break for a bit" on 05:12:15 02/25/14 Tue
Raven posted a response to this message on Facebook:
This has been an excruciating few weeks for me (on so many levels). I really do need to take a break from everything right now, but I wanted to respond to two out of many posts being left out here, and over at my website regarding what this nurse did. I did not expect THIS many emails and posts from medical professionals.
I am going to repost one that was left publicly for me, as it was intended to be public in the first place (and because it sums up just about everything you guys are posting about), but also because I am starting to get a mass amount of emails from others in the medical profession regarding what this nurse did to me, and most likely others as well.
If I lose my Oncologist, I have nothing left. Those who have followed my case closely know the situation well. I live in a rural area and all the other physicians wrote me off and said there was no hope for me. They truly wrote me off as a dead girl walking and were not interested in whether I lived or died (you don't know the half of it). There are some things you don't know because I didn't want to even say it out loud to myself, but I have had that same sick dull ache return again underneath my lesion and where that large mass of Angiosarcoma first began. For a while now...
It's been getting stronger and stronger, and I know the feeling well. John and I have had many cries over this with each other because every time I want to take my Gleevec, I end up having to fight off new MRSA sores and infections instead (you can't do both at the same time or they cancel each other out). We know what that sick feeling probably is. I have been trying not to think about it. Every single day is a struggle to deal with either the MRSA infections/sores, staph, mind numbing pain, or the returning cancer pain in that same area yet again. I think that's why John and I both just lost it with some of the advice we were given (HOW MUCH STRONGER SHOULD I BE)! We both came to the conclusion that nobody is going to understand. How can they......
I must tell you this because I believe in being honest, things are as dark as I could have ever imagined at this moment. There is no bright, sunshiny other way to say it. I feel the cancer returning. Maria Laura Falcon will understand this better than most. Angiosarcoma has it's own special kind of pain. It's like nothing else on earth. It's basically like a Pacman eating your flesh from the inside out. I haven't had this dull ache for a while, but it has been started again despite my efforts to figure this thing out, and stay ahead of things. It's kind of hard to do that when the one thing that can save you makes you so sick that you can't take it half the time. I don't know why MRSA had to come into my life, but it is what it is. I have faked so many smiles....many. Trying to keep myself of good cheer. I smile when I see my Oncologist more in that one visit than I do in an entire two weeks. If I lost him (especially now), I would be completely lost without anything. This is a very precarious situation. My heart is broken from the domino effect this woman has caused me and when someone told me that I should turn the other cheek, I thought I was going to lose my mind (and up until now, it's been so very strong). I am running out of cheeks to smack here......Running out of cheeks to turn....things I should ignore....no more room....where to put it all....
I know the danger well in continuing to have this woman in my life, and to be honest, we are furious that she has done this to me (what did I ever do to her) and other people, and yet she is allowed to trot off into the sunset and lose nothing, and yet she has cost us plenty. I have probably already lost the love of my Oncologist over this (wonderful report that she has destroyed to be sure with her crying act and her out and out lies and dishonesty). It was bad enough to do what she did, but to gaslight us over it was just despicable. She is no innocent here who just had a bad oopsie. I know he would never admit to it, but I fear that she has done the impossible.
I do want to make something clear because it is as solid as anything will ever get, I will not report this woman because it could hurt him (the Domino effect is already bad enough). You have no idea what that would do to me and to the many who depend on him. He is a compassionate and loving Oncologist and it's probably because of that compassion, that this very convincing and disturbing nurse was able to do the impossible and keep her job. John and I are just going to try and deal with things as best we can. For those who are healthy and cannot even imagine how things might be for me, I am sure you have all kinds of energy and things you think I should do, but in truth, I would rather die than see anything even remotely hurt him or his practice. I can't. I will let God handle this thing with the kind of wisdom and strength that we just don't have a lot of right now. We are just so tired. A very deep down beaten down kind of tired that is hard to put into words. The final nail in my coffin is if my beloved Oncologist came to resent me, and so venting out here is a blessing that I have, to release some of this pain, but it will not go any further under any circumstances.....can't.....
I can't lose my lifeline.......(she has taken much already).....
The following comes from one of many RN's contacting me and I need you to know, that your email had me in tears as well (getting so many very similar emails with almost identical concerns). I know you only mean to help. I love you for reaching out and trying to give me perspective. I truly do, but I hope that you can at least understand the position we are in right now. I have to choose my poison at the moment. The following is from an RN named Lilly, who has posted a few times over at Voy lately. God bless you and thank you for thinking of me......(getting an enormous amount of posts and emails from nurses and doctors, and finally I realized I needed to address this here and now).......
I am glad that I have kept where I live and where I am being treated private. If I could not even have a place to vent over something like this, I think I would lose my mind. I am very resentful at the moment that we do not have compassionate choices available in every state. I think it's disgusting that we have let it get this far for people who are suffering this much. We will put an animal down that has no hope and is suffering greatly, but for human beings, we must never show weakness, run marathons, and suffer until the bitter end with absolutely no escape. We watch our loves ones dying and suffering in so much pain and yet there is nothing we can do but suffer and all they can do is watch......(sick).....
Sorry guys, angry, scared, and just plan tired....
Please don't take it personally if I don't want to talk to anyone right now, because I truly don't. I have asked John to handle any calls for me. After this, I feel I just need to shut down for a while......(hope you understand that it's truly not personal no matter who you are)...
Lilly (RN from
. (posted before this message)
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