Paula:

I have been reading your posts and praying for you and your husband. Im sorry that you are going thru this. I wish I could help you more by giving you some good advice, but Im sorry I cant. Im here to lend an ear and moral support.

Pain meds do make you very tired. Also when fighting cancer it wears you out too.

Paula, You and your husband have been in my thoughts as well.

I can't give a lot of good advice but when you asked "how will I know when to call hospice?" it made me wonder if you have talked to anyone at your local hospice at all yet. If not, I would say do it as soon as possible. They know a lot about pain control as well as so many other things. They are not just people to bring in at the very very last minutes but people who can help him live all the time he has up to those minutes in the way he wants with minimal pain. They will also just help you feel much less alone. Although this board can also do that, it's good to have support from more than one place right now.

You'll remain in my thgouths and prayers

Nelie

Paula,

When I hit my knees tonight, you and Jim will be in my prayers.

Paula
i cant speak highly enough of hospice care.In the Uk we have two types of hospice care.The first is home care provided by the community palliative care team,and the second is actual inpatient care when the time is drawing close.I am a qualified nurse ,but the one thing i was terrified of was robin dying at home.When the palliative care consultant came to the house,it was one of the first things he asked me about,and i told him when robins time was close i would prefer him to be in the hospice.The main object of palliative and hospice care is pain management,the most important to me was the total family support they provide.The nurses never came in to our house to see robin and see to his physical needs,without taking me into the kitchen and asking how i was coping/sleeping/feeling etc.When Rob was admitted to the hospice to get his pain managed ,it was like being wrapped in a great big warm blanket,of love and care.Rob loved the place and the people who cared for him,and his only real fear was being sent home again which he never was.They saw to his every need,physical,mental and emotional and the team of Doctors,Nurses,alternative therapists,counsellors and chaplins,were dedicated and committed to all our family.Rob had massages,aromatherapy,rakhi,counselling sessions when he was in the mood,and clear concise information given to him at all times.

They were wonderful both during his last weeks,and after he had ,gone,offering bereavement counselling for up to two years for myself ,his daughter and his brother.

Jims tiredness may be caused by medication,but could also be because his body is worn down with the constant fight against the onslaught of the disease ,a good palliative care specialist will explain the mechanics of losing the battle,and the manifestations it will display,so my advice is get in touch with some one who can explain it all too you.

i am please you Pm'd me and hope i can answer your questions,and help you through the next few weeks/months.

much love liz

Paula- I have already spoken to someone at a Hospice facility near us. She also explained that you don't have to wait until the last minute to reach out to them. As Liz said they are also there for YOU. Please call them soon. You needn't go through this alone.I have been praying for you and Jim often.

Sue

Thanks so much for the advice everyone. Jim and I go see his RAD Dr. tomorrow and I am planning on getting Hospice information. I thought they were there only for the end - When I think of Hospice, my only reference is from the move "The Gloaming". I'm going to miss another day of work, so that I can get some more definitive answers about this.

We had a better day today - he didn't seem as tired, however his knees buckled at one point and I thought he may have broken his back. But he sat down for a few minutes and then off again. He's incredible and I only wish that I had 1/4 of the strength that he has.

Thanks again everyone for your prayers and advice...so ready or not, Hospice, here I come...without Jim for now.

Hugs to my cyber friends!
Paula

Paula- You obviously have an amazing amount of strengh yourself-do not underestimate that. Let me know what kind of info you get from Hospice. Sue

We spent 6 hrs. in the RAD Dr. today - they were surprised to see us so soon. But they went ahead and did the tatoo, the trial run, got all the powers to be to agree to the angle of the beam and then burned the hell out of him....We got home at 7:00 pm and he exerted so much energy removing his prosthesis, that when he made it to bed, he broke out in tremors, that took all of my body weight to hold him in the bed...after about 10 minutes of shaking, which seemed like 10 hrs., he settled down and is asleep. I went to the store and broke apart in Wal-Mart...some lady came to me to hug me and then told me about this great tea from Mexico that saved her life from cancer....I don't know, right now, it just seems so hopeless....I couldn't bring myself to talk with the Hospice people today as I didn't want Jim to think that I was giving up on him....I'll wait for another day.

Thanks again everyone for all the prayers.

Hugs - Paula

Paula, I have been reading here...just couldn't post to ya till now. I just ache for you. I just lost my 31 y/o daughter to this evil disease in Nov. I'm also a Nurse.
The fatigue is quite typical, due to meds, weakness from disease, the body & mind are worn out. They will sleep more, and more.....become weaker. You will know.....it can happen slowly, or quite quickly, so take each day as you can. If there are things you need to talk about do it. If you need to hug, love, hold each other do it whenever you can. I held my girl and would say "I need to hold you" she'd reciprocate. As she died, I would say ' I hold you, honey'....
You are so normal in wanting specifics, and there just arent' any. But, you will know.....as things change. Contact hospice, have them available when the time is right. My heart and prayers go out to you. It just seems so unreal, and yet so very real. Make sure he has plenty of pain meds. There is no reason for him to feel any pain, and when he is ready, or it is the time, keep the emotional pain at the lowest too, with sedation. Christa never wanted to be out of it, yet she didn't want to have to suffer either. She had to see her 2 y/o daughter and know she was leaving her. Sedation can be a good thing. It is up to the person.

Paula,
From what I remember from when we put my father on hospice, is you are not allowed to have any treatments or medications that will prolong your life so I don't know if he would be able to continue his radiation treatments, even if they are palliative. Ask when you contact them. You can go on and off the program. Hospice is for the terminally ill and they reevaluate the patient every 6 months to see if you should remain on hospice. They were marvelous at pain control and the nursing service they recommended, but didn't pay for, was excellent and the cheapest in the area. I think you should contact them now so you have the information when you need it.

Take care,
Eileen