Mets in both lungs - feeling sad

Hi Kathryn,
My mother who has a dimentia with psychosis and is in nursing home was diagnosed with colon cancer in february of this year. I am her conservator. I did everything I could to fight the doctors for them not to tell her the diagnosis. I knew that it would mentally "kill" my mother. She has never been a strong woman even when she was mentally well, and especially now the news would have been devastating for her. When she went for surgery I told her that she has a tumor in her colon that needs to come out so that it would not prevent her digestion. That worked. She is on chemotherapy now in the form of oral pill and she still does not know the diagnosis. Not knowing the diagnosis has greatly helped her to recover very quickly from the surgery and maintain a relatively good mood throughout all this time.

Also, I come from Europe, and in my culture it is not customary to tell the patient about the cancer diagnosis. A doctor would first talk to the family and let family decide what should be told and what not. I think the medical care in this country does not care about patient's feelings. They wanted to "kill" my mother.

So, with that said, I totally understand your concern. It is very unfortunate that Mark's doctors did what did. You just now have to handle this the best you can. Tell Mark that you are there with him all the way and love him and that you are one team - you, him, doctors, etc. and you will fight this illness.

He is very fortunate to have you on his side. My thoughs and prayers go to Mark and you.

Eleonora

Oh Kathryn - I can so understand how you feel and how you were only trying to protect him. I'm sure he understands that too. But, they are his scans and if he asks the doctor to see them, then that is his right. Don't feel bad - you were only trying to preserve his mental health - which is very important. However, given that he is a mentally competent adult, no doctor should legitimately deny him access to information about himself that he himself asks for.

A story about my diagnosis. I received news of my original colon tumor in the recovery room after colonoscopy. Then the doctor wandered out and I heard him talking to my husband - "....positive attitude so important...., in for a rough ride, take it one step at a time blah,blah, blah...." I said to my nurse ' Damn it - they are already talking about me as if I am no longer even an adult". She said "You go girl!". And when they both came in I proceeded to tell them both that I didn't appreciate being talked about - thank you very much - that this was my problem and I wanted to be involved in any discussion of its solution. Yes it would have been nice to not know anything about all of this, but since that is not at all possible I wanted to be as much in control as possible and not feel relegated to the background with my husband filtering information etc. Haven't had that problem since. This whole experience has SUCKED big time, but I feel better being the one to get news first and being the adult who is still in charge of herself.

So, speaking of rambling I am sorry. Only point Kathryn is that even when the news is bad, facts can be empowering once you recover from the shock. And sometimes what you imagine is even worse than the reality.

Take care (of yourself as well as of Mark)

Betsy

It does not sound to me that Mark was insisting on knowing. And if he was not really insisting, it would have been much more merciful not to disclose these test results. Especially considering previous postings that he was very sick and very down. Not all people of sound mind are able to take this news. I know few of them.

If a patient is of sound mind, and is very insistent and blunt about knowing, then, yes, of course, the patient should be told the reality. But if there is no insistence, I don't see any necessity to devastate the patient. If a patient changes his/her mind about not knowing, the option to tell is always there.

I have noticed for 14 years being here that doctors here are very much in a hurry to smack the reality right in a face, when there is no necessity for it.

But this is just my opinion.

Kathryn,

I know how you feel. I am my father's health care proxy and my brothers and I basically make all of my dad's healthcare decisions for him. He is an able minded individual, however, he has a difficult time understanding english, especially medical terminology, so we have to interpret everything. Right now, I am having my own dilemma: My father is stage IV and when I asked the onc how long my dad would be on chemo, he said we would have to take it on a step by step basis. Then I hear stories of people with stage IV that are basically on chemo forever with some breaks in between. My dad asks us all the time how long he will be on chemo (he hates going through it, then again, I don't know anyone who enjoys getting chemo). It's hard on me because I don't know what to tell him. I feel like I shouldn't give him any indication that he could be on the chemo for a very long time. That would really bring him down. Some people are telling me to just tell my dad that for now, he will be on it for 3 more months (which was the original plan until a spot was found on his liver). In my dad's case, I think this may be the right thing to do, because if he thinks he will be on the chemo a lot longer than he expected, it would devastate him. I do agree with the others in that maybe this is better for Mark because now he knows exactly what he is fighting. He really is blessed to have you.

God bless the both of you,

-Lee-

Betsydoglover said:

Oh Kathryn - I can so understand how you feel and how you were only trying to protect him. I'm sure he understands that too. But, they are his scans and if he asks the doctor to see them, then that is his right. Don't feel bad - you were only trying to preserve his mental health - which is very important. However, given that he is a mentally competent adult, no doctor should legitimately deny him access to information about himself that he himself asks for.

A story about my diagnosis. I received news of my original colon tumor in the recovery room after colonoscopy. Then the doctor wandered out and I heard him talking to my husband - "....positive attitude so important...., in for a rough ride, take it one step at a time blah,blah, blah...." I said to my nurse ' Damn it - they are already talking about me as if I am no longer even an adult". She said "You go girl!". And when they both came in I proceeded to tell them both that I didn't appreciate being talked about - thank you very much - that this was my problem and I wanted to be involved in any discussion of its solution. Yes it would have been nice to not know anything about all of this, but since that is not at all possible I wanted to be as much in control as possible and not feel relegated to the background with my husband filtering information etc. Haven't had that problem since. This whole experience has SUCKED big time, but I feel better being the one to get news first and being the adult who is still in charge of herself.

So, speaking of rambling I am sorry. Only point Kathryn is that even when the news is bad, facts can be empowering once you recover from the shock. And sometimes what you imagine is even worse than the reality.

Take care (of yourself as well as of Mark)

Betsy

YOU GO GIRL!

I feel exactly the same way....though nothing like that happened. I saw my tumor on the colonoscopy screen and ever since I have always asked to remain awake to watch and see....

As for telling/not telling Mark.....I definately fall into the Tell Me Don't Protect Me catagory. I don't like others thinking they can have that power over my health (oh surprise) be it emotional health or physical health. I like to be the judge of myself...of what I can/cannot handle. Give me the choice, don't decide for me.

peace, emily who likes knowledge for empowerment and doesn't like to feel patronized