Another day with a nincompoop at the Oncology Center on Thursday. I had a 1:15 appt to see the Dr., which I wasn't pleased about because that meant I would get my chemo later. Who was the nurse that I had to go through first before I could see the doctor? FRIGGIN' GRACE!!
Some background of my history with Grace. First time I met her, she walked into my hospital room, pulled the curtain and stuck her stethoscope down the front of my gown. I said to her, "and who are you?" I couldn't believe it, she didn't say a word to me, just launched into a physical exam! No introduction, "I'm Grace and I'm here to do a brief exam....NOTHING!" And she did a poor job on the exam. She always listens to my breath sounds through my shirt, and she does the exam too fast, there is no way she is actually listening to my lung sounds!
Second time I "met' her: I'm in the hospital, getting my chemo and it's my last treatment, after this one I'm done! It's the Friday of Memorial Day weekend, a couple years back. She comes in and starts insisting that I have to return to the hospital on Sunday to get a Neulasta shot. Mind you, I had gone through six rounds of chemo without ever getting OR WANTING a Neulasta shot. It' is supposed to help boost your immune system and it also can cause severe bone pain. Sandy and I had decided that I would allow my own immune system to deal with the chemo, thank you very much. This Grace woman kept haranguing me about getting the shot, it was awful. I didn't know what to make of it. The nurse who was my one to one that day would tell me when Grace left the room, "you know, you do what you want." Finally I told Grace, go ahead and set it up for me, just to get her off my back. We had already decided there was no way we were going back to Providence on the holiday weekend for a shot we don't believe in.
The third time I see Grace was when I had my recent allergic reaction to the Doxyel. She was the nurse in charge of responding to the emergency. When I saw her I thought for sure I was going to die! All she did was do another poor job of not listening to my lungs, which you would think would be a critical exam for someone who was just struggling to breathe! Then she held my hand and comforted me....made my skin crawl.
So, I get her again on Thursday and she wants to argue with us about our decision to have the G tube removed. I don't care how many times we explained that the tube wasn't doing it's job, that it was causing me pain, that we were constantly fighting off infection at the tube site, etc. etc., she would say, "I hear what you are saying, BUT...." and she wouldn't stop. And she kept talking to Sandy and not to me. At one point she even said to Sandy, "you are going to have chemo today and that will help" and Sandy almost yelled, "I'M NOT HAVING CHEMO, SHE IS!" Sandy kept telling her to talk to me. It was wearing me out, I could feel my energy being sucked right out of me. When she finally said, "how about if they take it out and put in a tube that DOES work?" I thought I would lose my mind!
At one point during her harangue Sandy stood up abruptly. I looked at her face and I thought for a second that she was going to hit Grace, or walk out of the room to find someone who is sane. Instead she put my iPhone in my coat. Grace didn't pick up that we were upset with her. I have not seen that look on Sandy's face for a long time...it's the look she gets if she thinks someone is trying to hurt the dogs. Scary!
Then she did her usual shitty physical exam...she listened to my heart in weird places, she rushed through the lung exam, but WORSE...she only listened to two sites on my abdomen! I'm there with bowel obstructions for crying out tears! Bowel sounds are critical! Then she goes through this whole question/answer thing as if it was my first time there....HELLO, I've been coming here since 2009!
Finally the doctor came in, dragging Grace with her. We once again explained our reasoning for having the drains removed. The doctor told Grace to set it up with Rhode Island Hospital as she wasn't comfortable removing it due to my unique anatomy (due to my gastric by-pass) Grace had the good sense SOMEHOW...to keep her big trap shut.
Grace had taken so damned long with her friggin' dog and pony show that I was late getting upstairs for chemo. Which means that they took someone ahead of me, which made me even later in getting started, which means that the steroid they give me was administered late, which means that it didn't wear off and I was awake all night, as a matter of fact it's Nightly News time and I still haven't really slept today either.
They set it up for me to go this morning to have the tubes out, because it was too late to have it done yesterday....thanks Grace! We went up and they took the tubes out, piece of cake. I felt better as soon as the balloon that anchors the tube was deflated in my little tiny stomach pouch. Sandy still can't believe that they put the tube in that little pouch..."no wonder you couldn't eat, it was full!"
As more and more stuff drained out of my abdomen on the way home and once I got home...Sandy had to change the bandaging three times in a couple of hours....I felt better and better. I left a message for the doctor letting her know that all my systems are functioning normally and I feel a thousand percent better. Tonight I ate a good sized bowl of Jean's hamburg soup for supper and now I'm enjoying some rainbow sherbet!
Doctors need to listen to patients. Dr. McCourt listens to me. I know she wanted me to leave the tube in, but I was iffy about having it put in right from the get-go. The NG tube didn't do anything to decompress my abdomen, why would the G tube be any different? I trust her though and was willing to try. Turns out it made matters worse, it didn't decompress my abdomen, it filled up my stomach pouch and it exposed me to the possibility of infection. Not good.
The other thing about allowing them to put the tube in...it's a slippery slope. I don't want to have my life prolonged with artificial things, tubes, mechanical devices. I saw in this last month of having that tube in me how degrading, depriving and onerous having just a G tube installed can be. I don't want my medical support people think that I am willing to endure anything to stay alive. Quality of life is critical to me...I don't want or need to live as long as my father....I don't mind going out earlier, as long I can have dignity and peace.
Grace will be dealt with. The nutritionist tells me that many people have the same complaint as I. I will be telling them to keep her the hell away from me. Another one who is incompetent and proves it over and over again. I haven't had one positive encounter with her.
On the other hand, Sandra my chemo nurse is a star! She is so competent, attentive and handles my requests with no muss or fuss. We got the dosage on my benadryl lowered at almost a moments notice yesterday, which meant that I wasn't all doped up during my treatment. Big improvement! I am so happy I have her..and she, Sandy and I are bonding and building a good working relationship.
Oh, and I wear a mask from the moment I enter the medical buildings. Yesterday there were two kids in the Oncology Waiting room, both had colds and were coughing and sneezing all over the place, wiping their noses on their coats and then touching everything around the room. The snack lady even let them put their hands in the snack box to pick a treat. I told her afterwards what they were doing and that she never should have let them do that. Sandy and I were cringing the whole time we were out there. And I only took off the mask when I was in the room with Grace....and she asked me in a sarcastic tone, "and WHY do you have this?" I told her "BECAUSE I"M PARANOID ABOUT PEOPLE'S GERMS!" That shut her up....about that anyway.
Anyway...that was my bizarre day yesterday. Today was wonderful and I'm so happy I don't have that stupid tube protruding from my side anymore. It's not natural...it's not right. I have complete empathy for anyone who has to live like that. I won't do it again.
Thanks for listening....and GO PATRIOTS!