When my father was moved from the surgical trauma unit to the surgical step down unit I encountered one nurse that I felt like treated my father and I poorly. I expressed my concerns about my fathers condition to the nurse, only to have him blow me off. Because it was early in the game I felt like I had to let go because dad was in capable hands (after all he was in a hospital) and I felt like because he was my father and I cared so much for him that no one could take care of him the way I felt like he should be cared for.

The next morning, 12 hours after I left him at the hospital in those "capable hands", we received a call letting us know that dad was in congestive heart failure and they were considering life support. They had drugged him with Ambien during the night and tied him to the bed, for their convenience. (The agitation he experienced didn't help the heart condition that previously existed) Dad's version of the story was that he kept asking them to help him to the bathroom because he needed to have a bowel movement and he thought if he could get in there and just have a few moments of privacy that he would be able to go. They were aggrivated because the heart monitor leads kept coming off and rather than spend a few moments trying to find out what was going on drugs and arm bands became the answer to their problem so they would not be bothered. It was the ENT team that came in the next morning and found him in such a grave condition.

Just because someone is a health care professional doesn't mean that they are qualified to deal with patients nor does it mean that they have compassion for the patient or their families.

Take your complaint to the Director of Nursing of the hospital. I did. I went directly to the top without climbing the ladder. You better believe that when I started talking they started listening. They do not take this kind of thing lightly, but if you don't bring it to their attention they have no way of knowing about it. Every complaint will be investigated and maybe before that health care professional treats another patient like they did your loved one they will think twice before they do it again even if they were not formally reprimanded.

Hospitals have a Patients Bill of Rights. When making your complaint cite specifics. Patients families are also covered in these Bill of Rights.

I've ranted enough. Good luck.

Joy

Hi Amy, Sure don't like hearing this about Minnie's battle- makes me sooo mad! Please tell her that she is in my thoughts daily and I know what kind of fighter she is-and your family is-
You have so many friends and so much support and love here. Amy in the Ozarks

Mom had another bad day today. She was throwing up and sick to her stomach all day. She is so weak it breaks my heart to look at her. In the past whenever anyone asks her if she is okay she always says yes even when it is obviously not true. Today she answered no. She said that if her scans come back and it shows that the chemo isn't working enough to make it all go away she isn't going to continue treatment. She said an extra year isn't worth being this sick for 6 months of it. I can't say I blame her. If it's this hard for me to watch her be this sick, I can't imagine how it is for her. I also don't know how or if I should push her in either direction. I just let her vent and made sure she knew it was her decision.


Her medical oncologist is almost positive the spot on her lungs is cancer not scar tissue as the people at Hopkins said. He's so sure that even on moms paper work at the chemo center it says she is being treated for lung cancer with metasis on the neck. I don't understand how they know if it has never been biopsied. Even the 3 spots they were convinced were cancer that they actually did biopsy came back negative. There were two others that they were convinced about but they couldn't reach them for the fine needle aspiration. Are the docs being lazy in not doing biopsies? Her oncologist said that the new scans will tell us about the lungs because if they shrink they will have been cancer. Our last visit with moms ent ended with him telling her there was nothing he could do and that she needs to do chemo to try to maintain life for as long as she can. After the visit we went downstairs for the biopsy's and they said they were negative. How can they just not know? Should I be pushing harder? I'm young and I don't think they take me very serious sometimes. Mom just doesn't have the energy to fight.
cancer sucks

Amy, I am so sorry and so sad when I read the latest update. When is Minnie going to have her scans? I really hope they show that all her suffering has been worth it and the cancer has really gone away or at least is showing signs of going away so that she can see it's worth it to continue. I can't blame her at all for not wanting to be sick all the time-especially if it isn't buying her much in terms of extra time. Perhaps when the worst of this latest chemo wears off she will feel differently, though, especially if the scans show the chemo is working.

Based on what you've said, I think at this point it is totally up to Minnie how hard she wants to fight this. What will happen if the scans show the spot on the neck is gone or has shrunk but spots on the lung (which this one doc thinks are cancer) NOT shrinking? That could mean it IS scar tissue--as they said at Johns Hopkins. It seems to me that at that point they should try to do another biopsy to answer the question once and for all.

I don't think some docs take their patient's questions seriously enough no matter what your age, but keep asking and pressing for answers on this. At the very least Minnie needs more firm information about what is going on to make her decisions about future chemo.

Please let us know the dates for the scans so I can send some special prayers then. And give my love to your mom.

Nelie

I have been reading all this for some time now and this is getting on my head !

Amy ,What the hell do the doctors mean by guessing that spot on the lungs are Cancer ? I would suggest you to please take a stand here and ask ur doc to explain things .

I dont know the past but have you taken any other docs opinion ?
Trust me its always better to have a doc who atleast have time to talk to you and understand your questions.
It seems to me that all your hospital visists have been kinda business for the medical team rather than treatment.

You are doing a good job by fighting back but its matter of life and death, so your stand is correct, Never hesitate to take second opinions and never feel your expecting more from medical team may that be your doctors or other staff.

As for your mom she is brave woman, hats off to her courage.
Please do take care of her and yourself and dont give up on anything !
You both are there in my prayers

Dear Amy.....and the rest of you girls...and your Dad....and your grandmother...and our dear Minnie. What a very difficult time for you all. You all play a different role in this fight, and I am very proud of you all, mostly you, Minnie, for giving your all to this fight.

You're right, cancer sucks, big-time.

My prayers will be with you daily for strength and courage and clarity and, hopefully, good health.

I "listen" every day, as many, many do, but I don't post often. Please know that we are here behind you whether you "hear" us or not.

XOXO--COlleen

I was told by a well respected MO before I was Dx'ed with cancer that if my swollen nodes shrank due to the antibiotics he put me on that I definitely did not have cancer. Two weeks later they had shrunk 1/2 in size and he congratulated me, shook my hand and said "you don't have cancer!!" Two months later and 2 more doctors and a FNA I began my Tx for Stage IV SCC. MY point is a biopsy is the only way to tell for sure if somethings cancer so hopefully they will stop guessing and do it.

Hang in there Minnie!!!

Hi Amy- My thoughts and prayers are with your mom and your entire family. Don't let the doctors intimidate you. You might be young but you are certainly not stupid-don't let them treat you like that. I've been blown off by doctors myself and have learned to speak up if something doesn't seem right. If you don't "get" what they are saying make them explain things until you do.I know that medicine is not an exact science. My husband has a rare case where the primary cancer has shrunk but the metastasis to the lungs has increased. Go figure. Anyway, best wishes to you all, Sue

I agree with David. A biopsy is the only way. Your Mom has had
enough of this foolishness. You hang in there for her and do not
let her give up without a fight. This has just made her so weak, that she needs a little help. They have got to stop quessing with her life. I am so sorry for you and Minnie. You are in my
thoughts every day. Ask for a second opinion her.
God Bless,
Debbie

Amy:

Im so sorry that you have to go thru this with your mother. Being young shouldnt be a reason for doctors to dismiss you. If it would make you feel better, try to take another person along to the doctor appointments. That way if your mom or you miss something the doctor says, then the third person can be there writing everything down. It might also help for just plain old moral support for both you and your mom.

Minnie is very brave and I know how bad treatments and the side effects can be. There were a few times that I was ready to quit my treatments too. Please tell her we are all praying for her well being. She has gone thru this before and can do it again.

How is her nutrition? Is she getting enough liquids to stay down? Did ashe get a peg tube? If her nutrition and liquid intake is down that could be why she is feeling so poorly too. Chemo makes it pretty difficult to keep things down sometimes, is she taking anti-nasuea meds and pain killers? All these things may help her to feel a little better.

Best of luck with everything, I am saying prayers for Minnie and your whole family.


Christine