fear with loss of confidence

Hi.. so sorry for all that you are going through.
If changing doctors isn't an option.... bring the note you wrote to us and read it to your doctor. Make him understand you need him to be honest and then HE needs to regain your trust.
If his response to your statement isn't satisfactory...... GET ANOTHER DOCTOR!! Or add another doctor you can see for honest responses. But make sure your husband didn't request for him to sugar coat anything.
Best of luck. Try not to worry about the speed and/or pain at the end of the battle. There are so many medicines and programs to help. Each person is different... all that matters is how your husband is now, and to fight. Death doesn't have to be horrible. There is hospice, which is wonderful and available everywhere. You need to talk to your doctor about your specific questions.

Please learn to care for yourself also. Ask for help and accept it. Makes life more enjoyable. Consider the help a deposit in the bank... you can repay it later when others need you. Right now your husband needs you.

Be strong. I will be thinking of you. jana

Hi,

I'm sorry about the situation you are in. I can totally relate to doctor's predisposition to sugar-coating... NONE of my doctors told me they thought the primary tumor was unresectable, and just recently, my oncologist told me he wasn't too worried about the CT scan because most spots were probably from the surgery. I spoke to my surgeon today who admitted that it was probably the opposite - he missed quite a few metastases and only a couple of the spots were scar tissue. I knew the truth all along, but I hate the glossing over MDs attempt to do. I am a big girl who wants the truth. BUT I will not rant too much and I will try to put myself in their shoes for two seconds. Firstly, there are many ways to tell the truth and perhaps the doctors don't feel they are lying but rather downplaying or ommitting facts. Also, doctors know how important hope is and maybe they are giving what they feel you can handle. This, of course, is inappropriate. I have told my oncologist straight up that I want the whole truth. I still don't completely trust him so I read every single note in my file, every CT, every PET, EVERYTHING. This is my body, my treatment, my disease. I also told my doctor "What I do not ask, do not tell me because I don't want to know.". Personally, I do not want to know his guesstimation of how long I have or other statistics on metastatic disease and death rate. I think you should simply tell the doctor that you would appreciate getting the whole picture because, at times, you feel you are not getting the whole story. Why can't you ask your questions around the doctor? It is his responsibility to answer any questions you have.

Your concerns and questions about death... I completely understand. I have metastatic disease and have been fighting it since Sept. 03 with surgeries and chemotherapy. I am super positive and optomistic about my prognosis but of course I wonder sometimes. One day I just figured I would spend the day understanding the physical aspects of a cancer death. I wasn't particularly sad or worried, so that's why I decided to do it. I visited different sites and looked at symptoms and pain control and what hospice can do for the terminally ill. I have not thought about it since, but my curiosity was satisfied and I have felt better about death since then. I also talked to my doctor and I made him promise that he would tell me when things were not looking good and I also made him swear that he would be with me to the end taking care of all my symptoms and controlling pain. All this being said, I HAVE NO INTENTION OF GOING ANYWHERE. But reading a little about death and making myself comfortable with the subject... Well it just eliminates the fear. You have to get rid of the fear if you are going to focus on being well and enjoying life.

The very best of luck to both of you. Wishing you and your family a gentle 2005 and I hope you are enjoying FRIDAY:)

Hugs,
Andrea

WARNING!!!! DO NOT READ IF YOU DO NOT WANT TO READ ABOUT DEATH> PLEASE.

dear pjenks,

you asked about death. I do not think that asking or wondering will make you drop your focus. I agree with andrea that if you get a satisfying response to your curiosity then you can move on.

We all will die. So it is not a crime to think about it or discuss it. I sure wish my sister would have discussed things before she died.

I only have my experience with her to share with you.

Since you know everyone is different then take this for what it's worth: one woman's death experience from her sister's point of view. (just like everyone's birth experience and pain tolerance and threshold is different).

Her's was not quick or painless at all. In fact it was a long roller coaster that took its toll on all of us. She did not die peacefully in her sleep without a stuggle to get there. Eventually she was drugged into a catatonic state and let go after my father was willing to accept her death....but that's another story.

Her pain increased over the months until she was crying out a lot. She was only 33 and she just had a baby (5 months before she died). Six weeks after the baby was born she did another round of chemo that made her sicker but her liver was shutting down and her abdomen was filling up with fluid so she looked 9 months preggie at all times. She would have to go to the clinic to be drained often.

She was very yellow at this point since her liver was going.

She had a pool and thankfully it was summer so she did a lot of floating around in her warm pool crying out every so often when the pain got to be too intense. She was a tough woman when it came to pain so we knew she was in bad shape.

One day she finally admitted that she could not take it much longer and sure enough two days later she started slipping away. My BIL over medicated her the next day and she ended up in the emergency room.

I will never forget what it was like when I walked into that room. No one could have prepared me so I am telling anyone here who wants to read this:

It was violent when I walked in. There she was lying naked, skinny as a holocaust cadaver with blood coming out of every orifice. She was convulsing violently and her eyes were enormously protruding and dialated. She was gasping for breath. My other sister (who is also one tough cookie) had to leave the room to vomit. It was that disturbing.

Eventually the staff got her calmed down and peaceful and catatonic. she hung on a couple more days and then died.

Sure then day she died it was peaceful but getting there was violent and nightmarish. There was nothing hollywood death scene about it.

I am sorry if anyone has read this far and is upset but I believe in telling it like it is--the whole truth.

So for me to get cancer added even more fear to the death quotient. If I get that bad I will have no problem smoking some dope.

A point to be made is that she did not want hospice and maybe this would have made a difference. I will never know and do not care to speculate.

As for your doctor not telling you the whole truth.....it is not surprising to me at all. You just happened to find out. If he is good in other ways just keep him accountable and like spnger said (I think) have him rebuild the trust. Now that you know maybe he will kinow he cannot do that again.

I wish you the best.

peace, emily who will never forget