Cheryl, I'm so sorry that you are being treated so shitty. I work at a hospital (secretary), every hospital has a Patient Advocate. Get your husband to get that person involved IMMEDIATELY! No one should be treated as you are being treated. I can't imagine how panicky it must feel to be ignored by the people who are supposed to be taking care of you. No hospital likes to get bad patient satisfaction reports. Go above the nursing dept. and get administration involved. We've had patient's families at the hospital I work at directly call the Vice President of the hospitals' office. I'm so sorry you are going through this.

My mom had the "whipple" surgery at Johns Hopkins in Baltimore for pancreatic cancer. She had the top surgeon in the country but the nursing care was horrible. We stayed with her round the clock or she might not have made it out of there alive. It was really bad. I will continue to pray that things get better for you. Wanda

OMG Cheryl!! What a nightmare. You need to have someone there with you to ADVOCATE for you. Write down what is wrong/needed and give it to your advocate and have them stay on it until it is fixed!! I have been where you are.

Explain to them that you are in pain, concerned for your safety, and ask them to put themselves in your powerless position!

Perhaps your personal advocate can find the patient advocate or you can show your list of concerns/desires to one of the doctors on their rounds? Sometimes an intern/resident will be more ACTION ORIENTED than the 'been there done that" balance of the staff.

Hoping to hear better news soon.

Donna

Waiting that long for pain meds is not acceptable. You must let your doctors know. If you get a standing order ie meds every 3-4 hours whether you ask or not, it is more likely you will get them on time. Otherwise the nurses will just wait until you ask, and if they are busy it will take a while.

Cheryl,
I HATE that your going through this! My sister had us around 24/7 and we are medically inclined and it was still a battle. Not being able to communicate was extremly frustrating for my sister. Have your husband call your surgeon and explain how your being treated. A lot of times when the head honcho speaks they listen. Please keep us posted. That NG tube was trouble for my sister also.

Better - yesterday morning was the worst I am not sure where most of these people went school - but common sense was clearly not a priority - to being accepted - so far there have been 3 decent nurses - I know that sounds not bad considering I've been here 5 days but - that's out of 10 - the rest for the most part Aren't great not sure if I would entrust the care of a sack of potatoes to them- I am doing most of my own care - they check in occassionally to see if I am breathing - but that's about it - and let me tell you - yesterday I almost wasn't - I am in a room - have been since Saturday - I can't talk - but when I push the alarm bell the wait is at least 5 minutes - except yesterday morning when I was really having trouble breathing and had to wait 40 minutes - because they were doing report - I was hysterical by he time they got to me - I don't get the mentality - it may have been 17 years since I graduated but as far as I recall - airway should still be number one since if there isn't any breathing being done then that person's dead. they had to remove the NG tube Saturday night because it got coiled somewhere behind my throat - then a resident came in the next morning and tried to put it back in - he handed me a large glass of water with a straw and said swallow when I try to insert it - dumbass - my tongue is swollen - my airway is swollen - I can't breath properly but I am supposed to swallow water? Needless to say 2 tries later and a lot of gagging he was unsuccessful - yesterday an ENT res came in froze my throat and it went in not comfortably but better - really - some people have no common sense - however I get the trache - a lot of it is positional - if you are drooling and phlegmy - which I am very much the queen of both - head needs to be to one side or the other at all times or you end up gagging as it runs down the back of your throat - so that is what I do. And this helps with the NG too - today should be better - as they are likely removing the last drain in my neck- repositioning the iv from my foot to somewhere on my arm - the one without the cast - (the one I have two bruises the size of Australia on - because it too 3 nurses 8 tries to draw blood..) And most importantly they are putting in a fenestrated trache so I should be able to talk which will help matters.

Sorry I posted the last post too soon - I was actually considering hiring someone for a few days - to be here with me - but I should get my voice back today - so that should help - also I am able to do most of my own care - I feel bad for someone who can't and doesn't know - they must be terrified. Pain hasn't been too bad - the morphine they had me on a pump for - wasn't helping with the pain just making me a space case and suppresses breathing which is already compromised - so I asked them for something else and ended up with Tylenol number threes - which is now a standing order - my Goal today? Have a shower! Let's see if I accomplish it - thanks you all have been a great source of comfort!

I am so sorry you are having to experience this! The staff at my hospital were a bit lacksidaisical but I wasn't in your situation so it was irritating not frightening. I like BranyK's take on it. Hope that they can find out what's causing the pain in your lung. You are in my prayers!

Cheryl,
I too am sorry for your hospital care. I think all of us have a nightmare story or two about some aspect of our cancer experience. My has to do with two residents who did not know what to call the carotid artery on my neck, while they were trying to do a FN aspiration of a lymph node close by. There's more to that story, of course. This was earlier in my treatment and not at MD Anderson.

Anyway, it is good you can set yourself a goal for the day, like a shower, because that is how we make it through, by setting daily goals. It is great that you have a background in nursing as that will make it easier, but you still may find that you need either a second person there to reinforce you, if nothing else, or an advocate, such as the patient advocate someone mentioned earlier.

Have they indicated how long you may be in the hospital? I left the hospital following my surgery with the drain still in from my neck dissection, and without being able to eat anything but yogurt slowly and jello, although I could drink liquids. All with a certain amount of pain present of course. But getting away from the hospital was good for me because I recuperated better at home. I had to go to the docs to have my drain removed, but that was simple. But it sounds like you have some additional problems I did not have.

Wish I could help you more. This too shall pass.
Anne

Can't your husband stay with you? If not can't you have your husband contact someone to stay with you? You are in no shape to be by yourself. Did your husband contact the "patient advocate"? You need to reach out beyond the nursing staff.

Actually now that I have a fenistrated trache in an can breathe I am fine - showered - changed - cleaned my room - checking emails etc... I am just appalled apt the lack of Concern for a patient - who cannot communicate and Is having trouble breathing. Its terrifying that the do this day after day to people - stick them in a room and leave them - with no ability to communicate - difficulty breathing - and then not come when you're called.. I dunno but I would fire someone like that since airway is priority - I am pretty self sufficient - but when you are that vulnerable you are all right - someone should b there to advocate. I always used to look at the patients and see the individual - and try to put myself in their soies - it's a perspective a few of them cold learn. Thanks guys you all are amazing