My complaint is from Rome where I live and that is I like to be kept informed and I have to pull answers out of the Dr. or nurse. It is like they don't want to explain or tell me anything. The only way I can get info is to ask for a copy of the test or my records to keep up with information. I know I must have a good Dr. as I am sill abovve ground but I would like the Dr.'s to tell me my diagnosis, explain treatment options, and quit treating me like they don't want to give me any information. It is as if they feel the least I know the better, but for me it is the more I know about something the better off I am so I can make informed decisions and be a part of my treatment. Thanks, Angel

Angel,

Have you said all of this to your doctors? Sit them down and tell them exactly how much information you want. If they don't get it, see if there's patient advocate or social worker you can talk to. I think every patient has the right to all information regarding his or her care.

-Margaret

Margaret in ma, Where would you find a social worker or patient advocate? I have have a phone number for the cancer navigators here an I will try them again. First off I couldn't even get them on the phone as they would say the person I needed to talk to had gone for the day, and that was every time I called, until I asked them for their bosses name and who actually ran the place and then the person they said had left for the day again conviently got on the phone and spoke with me. It was a short conversation and she was pissed, but I don't think I should have to go to the extream and be rude to be able to get information. I want to cry sometimes when I have to push someone to get answers. I normally just clam up and give up. At the cancer navigators I called 5 times before I had to get rude with them to get someone on the phone so I could find out exactly what they did there. Now I am sure that no one likes me there and I don't even want to call them back now for help.

Angel,

Where are you being treated? And do you have someone with you when you see your doctors? I understand your anger in feeling like you have to do battle to get answers especially since that's energy you should be using to fight your cancer.

Depending on where you're being treated, there might be a patient liaison that you can speak to. Can you have a friend call and ask?

Margaret. In Feb.08 I lost my husband. Last Feb. 07 I lost my best friend. My son gets angry because he is afraid to loose me even though he won't say anything about it but I can tell it in his voice he is afraid and that is turning into worry and anger for him. He wants to help me so much. I have 3 grandchildren of which 2 are special needs. I raised them most of their life but my son has them now and he is great father. He is my inspiration and my only child (he is 39 years old). I was 17 when I had him. I am one of the luckiest of all mothers to have such a wonderful son but he knows nothing about this disease. He is there for me in every way and would ask anything for me but if they don't answer his questions it will set him off and he will most definately get rude if he is gotten rude with. Like the Dr. wanted to send me home to early from the hospital and I couldn't even swallow my meds or even a drink of water and he told the Dr. under no surcumstances would he allow that to happen. Well they kept me 2 more days due to heart problems and not being able to swallow my meds after surgery. But now the Doctor got mad amd won't even speak to him period because he disagreed with the Dr. To answer your question I am being treated in Rome, Ga. at Floyd Medical Center. I am going to try to talk with the cancer navagators as I called just now and they do have a case worker. As usual, they are gone for the rest of the day! (Their favorite excuse not to do anything). I didn't say anything and I will call back again tomorrow. Angel Gotta go get a thyroid biopsy done now so I appreciate your letting me vent some. Thanks you, Angel

Angel,

Vent all you need! And good luck today - I'll be sending up some prayers for you.

- Margaret

Clearly, as a patient you have the right to know what is going on.
But also consider this, if you are at the receiving end it it surprising how much info may get lost/selective hearing. This is not the most rational of times. Being combative should only be used extremely sparingly and not as the regular mode of interaction with the physician/staff. If it is then you better change the physician, how can there be trust otherwise.

I have been dealing with a fair number of different physicians, nurses and technicians both in Atlanta but also at smaller locations. None of them were rude in any way. To some extent it also depends of the approach the patient is taking.

M

There should be a social worker in the Hospital. All of the Hospitals here in the Ohio Valley area have at least one person for this job. I have yet to meet one that isn't understasnding and caring. Ask one of the nurses about a social worker.

Angel:

There is some excellent advice here. Most of all you, are your best advocate. Remember, squeaky wheel gets the grease! Don't be afraid to ask as many questions as you feel necassary.

Support groups are a fantastic resource as well. Here in Phoenix, I am lucky to have SPOHNC. Support People with Oral Head and Neck Cancer. A wonderful organization that meets every third Thirsday of the month. The facilitors are RN's who are survivors of oral cancer. One of them at 7 years!

Another resource is a new book titled "Meeting The Challenges of Oral and Head and Neck Cancer a Surviors Guide" by Nancy Leupold and James Sciubba. It is an incredible book discussing everything from issues with Chemo and Radiation to insurance issues, swallowing disorders and social securtiy disability.

My thoughts and prayers go out to you Angel. God Bless you and may you be victorious in your fight against this terrible disease.

Jim,

You really think you over did it? If not, I've got a garden up north that needs some work.

Jerry