who gives them the right to take away our hope

Hope
I have very mixed feelings about hope. I believe hope is important in the battle of any disease. My husband fought against GBM for 15 months before he sucumbed to this cancer. We were told from day one that he would not survive. We would attend appointments and his oncologist would tell us (in front of our children) how well he was doing. He had a very dramatic response to his first round of avastin and the doctor was very pleased. He gave my children alot of hope that he was winning this battle. As soon as the kids (I say kids, they were all in their 20's) left the office, the doctor would tell me that I needed to prepare my children that their dad was not going to survive. He did not want to take their hope away even though he felt there was no hope. So I am a believer in hope, but not false hope. We also dealt with the DNR issue. It was vey difficult. My husband did not want to sign one, I wanted him to. I was hoping he would slip away in his sleep or during one of the several ER trips and be spared the difficult end that this cancer can bring. He was not. I am sorry for all you are going through. It plain sucks and nothing is easy about it.

Decide When You're Away From The Hospital
I have asked my family, if the time ever comes, to sign a DNR document for me, when they have been outside of the hospital for a number of hours if not days. I think there is just too much biased pressure when a caregiver is handing you the document and standing in front of you. Take the document home.

HOPE
You'll notice that I wrote the word HOPE in all caps. There's a reason. To borrow a phrase from Vickie Gerard (RIP), HOPE is a verb, an action word. It is what gets us through each day. I also firmly believe in the bible verse "Faith is being sure of what we HOPE for, and certain of what we can not see" (Hebrews).

As for doctors coming in and trying to steal your hope? They can't. They aren't God. They don't know how long any of us has, regardless of what they think. I was only given a 20% chance of surving my brain surgery and yet, here I am. My husband was told that my surgery would only be 8 hours; it was 18. And I have also heard of people who were given high percentage of surviving surgery or other treatment and they didn't. So the doctors don't know how long any of us have. Statistics be damned. If docs start trying to quote statistics and/or trying to steal your hope, I would politely, but firmly, tell the doctor that you appreciate their OPINION, but that you would prefer if they would keep said OPINION to themselves.

As for DNR, Advance Directives and Living Wills? Every time I am admitted to the hospital I am asked whether or not I have all the paper work lined up. My husband knows my wishes and we have planned for every contingency including filling out the dreaded paperwork. It was one of the hardest things I had to do, but I would rather do it than have to have my husband have to make those choices under pressure. And yes, I was asked about it at my first MRI and first CT Scan. I was also asked about it at my first neuro appointment as well. I simply think the docs are trying to cover their butts.

If it would help you, see if there is a patient advocate or patient representative at the doctor's office or hospital where you go who can help you navigate all the distasteful paperwork and red tape.

Good luck!

4theloveofmysis said:

hope vs time
I guess what Im saying is they are pushing the DNR to soon. If it was signed last month I wouldnt have my sister right now. They asked her if she had lived long enough or did she want them to try to save her. Good God why would they say that. I know where all this is going, not something I can say out loud yet.We have only had the first MRI after treatment I dont want to just give up. Im very lost... having a really hard time dealing with it. Like Ive said in my posts before Im a nurse, I give chemo, I hold patients hand when they die...I know more than I want to know...
I think that they look at GBM and go OH...
We would like to buy some time here. Everything works, arms, legs, fingers, toes, brain! We need more time...We are at the 4 month mark.
I dont think its fair that your labeled GBM.

HOPE
You have to wrap you arms around hope and hang on. I am well aware that this will eventually kill David, but I don't have to lose hope. No reason. None of us know how much time we are on this earth. Any of us could die today. I get up every day and Thank God for another day with David. Then I try to dos omething special for him and with him if I can that day. Sometimes that's tough, like when he isn't feeling up to it because of fatigue, worry or irritable with life in general, but I know it is to early to give up and I don't plan on it. You hang on.

Marty