Paula,

If you go over to the left side of Sue's post and click on her screen name a drop down list will appear. Click on "Send a PM" and you will get a screen where you can type a message and that will send an email to Sue. It's that simple.

Jerry

Paula- I started the conversation about the future and final plans. I took Minnie's advice- had the conversation and let it go. We just had our wills done which is something we should have done awhile ago since we have children. That also included power of attorney and living will. The power of attorney is important so you will have access to accounts and records. I know this is difficult to deal with but I feel so much better now that it is done. Next step- I want to start dealing with funeral issues. This is the worst but I will have to deal with teenagers and want to have things already planned.
I'm really sorry if this upsets you but I think it actually makes you feel alittle "in control" of things we otherwise have no control over. As for remaining time- we really don't know except for the opinion of the oral surgeon who just told us that based on the size of my husband's tumor he would say he has about 2 years. His surgery was 9 months ago and so far the metastasis has not responded to chemo. He has one more dose of Taxotere before he has another scan. That should give us more info. I just pray we have a great summer with all of us together because I don't think the fall and winter coming up will be.

Sue

I hope I am not being intrusive here but for anyone wondering about having this conversation, I just wanted to recommend getting a copy of the "Five Wishes" form/booklet,
https://secure3.electronet.net/agingwithdignity/subCategory.cfm?SID=3&category_ID=1

which I think would be a great way to start a conversation about some of the more difficult issues including what someone might want at their funeral or memorial service, and medical intervention steps that they do or do not want taken and under what circumstances (it is much more detailed and thus asks you to think out these things ahead of time much more than a health care proxy).

When I was diagnosed with cancer, I got a copy free from my church (many churches and some human resource offices have these forms) but you can also order a copy at the web site above. I have been working on some of the things in mine, including what sort of service I want after I die, even though I hope to be alive for many more years. It's really something everyone should do to help their loved ones should they die (suddenly or otherwise).

Nelie

Here is some information about the organization ("Aging with dignity" that publishes Five Wishes.

http://www.agingwithdignity.org/

Unfortunately paula i have had those conversations.If i can be of any help please feel free to ask.

love liz

Paula,

When Jim is ready, hospice is very helpful. There are stages that you and he will go through in this process. Just be sure he is as comfortable and free of pain as possible. My heart goes out to Jim and you and I'm so sorry this has happened. Life can be so friggin unfair at times, just have to deal with what it gives us a day at a time. You are in my thoughts,

Nancy

Thanks everyone for all the kind words - and no it doesn't offend me at all, Sue. I am at a loss right now. Jim went to radition today and they zapped him good in the belly to get to his spine - he threw up several times in the Dr.'s office and we are home now - he's asleep. Dr. said the nausea will disappear as quckly as it came on. No one ever thinks about people that only have one leg...he just can't run to the bathroom, but has to rely on crutches or a bucket.

I'm off of work the rest of the week - we go see the oncologist tomorrow to see what type of chemo cocktail they want to do for him. His parents come up on Wednesday and we will spend time with them - Thursday we see an attorney for all the legal stuff - I don't want to go there at all...Jim says we have to do it. Since we don't have children together, I don't see the sense in any of it, but he does, so I will comply. He did say that maybe this weekend we could go to a bed and breakfast to spend some time together. Right now his brother is staying with us (who annoys the s..t out of me, but he really means well and he really helps out a lot. The house that I wish now that we hadn't purchased is down to the bare bones and I don't even begin to know how to put it back together without Jim. We have the $, I just don't know how to go about getting a reliable source to help us out. I think it's funny, that I work at Mary Kay in Dallas and have for 15 years and have worked on the Habitat for Humanity Homes (Jim has even been so gracious to fire up his huge smoker and bring it to the jobsites to feed all the volunteers) and now I am faced with trying to get a home remodeled. I am trying to convince him to sell and let's cut our losses, but no way - he does not want me commuting 1 1/2 hrs. each way every day. So I am trying to be patient and sit on my hands AND mouth! His parents keep telling me that this will help keep Jim busy and his mind off of the situation as much as possible. They are wonderful people and I hate that they hurt so much. I hate that Jim is hurting so much....I'm glad that I have my cyber friends very, very much.


Thank you for all of your support.

Paula

Oh Paula - my heart is with you guys through this time. I wish there were words or some special "handshake" to send you that would make this easier.

I agree with Sue on the discussing the future makes you feel somewhat better and in control. That really helped with my mom. When her cancer spread to her lungs and brain it was "wait to die" time. She was very strong mentally for awhile and wanted to do alot of things. Our first reaction was no - rest, take your meds, etc. then we realized that whatever she felt like doing - she should do and if she wanted to talk about her funeral or other depressing stuff - we should let her. Now - by no means am I saying that it's easy for the caregiver - my life was HELL during that time and so was my father's, but we had to do what we had to do for her...

Good luck to you through this and keep posting. The people on this site have got to be the most amazing people in the world!!!

Paula
on the day that Rob was told there was nothing more they could do,we drove home in total silence.When we got home,i dropped him off and took the dog for a walk.We both needed some space to get our heads round the fact that he had a few weeks left.It was a total shock,we never saw it coming ,had no preperation time ,god he never even got offered chemo or anything else.

When i returned home 30 mins later,he was sitting in the lounge with a very expensive bottle of brandy and two glasses,and as soon as i walked in he told me to sit down,while he told me what was going to happen.

He then rattled off a list of things he wanted me to do,a list of things he was going to do and within a short while i was setting it all in motion.

I was in shock,but he had been thinking things through for a few days and was expecting the news.I didn't argue with him ,just set about doing everything he had asked.It was surreal,but it was all i could do for him then.My admiration for him knew no bounds and all that he wanted was done in a few days.

This left us three weeks to spend every minute together we had left.During that time he had the chance to tell me his wishes after he was gone.He was so so brave and it made my role so much easier because i just (for the first time in my life)followed his instructions to the letter.I didnt have to think or make decisions for myself.

Just listen to him Paula,and let him tell you what is in his head,and let him know that everything he needs or wants you to do will be done. This will ease his mind and let him concentrate on his own fight against this bastard disease.

I wish you both a peacful time together.


love liz

Well, we're home now from a surprise camping trip for me. Jim made arrangements to have a travel trailer brought to a Tx. state park nearby, instructed me to pack cool clothes and bring all of our paperwork.

We have been working on combing our files, he going through his and throwing things away. At once point we came across all the house plans that he had drawn up for us at different points and said he wouldn't be needing these and to toss them as well. I couldn't do it - they were all in his handwriting - he noticed that I put them aside and said, Paula, you didn't do as I asked - I know you want to see my handwriting, but it will not do you any good. He said that he has spoken with so many people that have lost a loved one and one of the hardest things to do was to throw out paperwork - cause they didn't know which ones to keep and which ones to toss. His goal was to remove that burden off of me. So I tossed them, too.

Another pain in his back developed while we were away and it is excrutiating - so I called RAD Dr. and we are to go in Monday. I called his chemo nurse and she told me that this was a good sign, when chemo is working, cancer begins to die and that this is very painful. I've never heard this at all from any of his Dr.'s., so we will talk with his RAD Dr. as he really shoots straight with Jim. Jim doesn't want the "warm, fuzzy, emotional, B.S." - only the facts so he can make the best decisions.

We did talk about our trip to England to see my brother (who is also terminal with cancer) and Jim doesn't see himself making the trip. So I'm to try to get our $ returned or combine the tickets for me....I cannot leave Jim now to go see my brother - I would go nuts being that far away from him.

Also - Jim is sleeping a lot...is this due to the chemo, pain meds or is this what's to be expected when the cancer returns?
How will I know when to call in Hospice, I wake up every hour just to put my hand on his chest to make sure he is breathing; I'm so afraid that I will make a critical mistake and it will cost of precious time together...How will I know when the end is near?

Thanks to you all for being there for me - this board is all I have for support.

Hugs,
Paula