Xtandi side effects, results, etc (continued)

Passages & Jitters99....so good to know that you both R still posting and letting us all out here in PC land...what and how you both R doing........good days and bad days, I am sure....and they will continue for a time. Jitters99 weren't you suppose to be going to a support group? Get going girl....Passages, maybe there is one at one of the local churches or hospital for U......it's better to know that your feelings of loneliness, depression and all of those other emotions are normal and to be expected.....

nhwife.....hospice, understanding what is needed now....is a wise choice. Pain is such a defeating and emotionally scaring to oneself. Although we R not at that point yet, my husband sometimes just gets tired of all the handicaps that have gone alone with this disease, fatigue, pain, swelling, incontinence, inability to do any type of manual labor, etc, all of that is enough to keep a person depressed. Which my husband is a lot of the time, but I understand and try to make him laugh by putting on his jockey underwear on over my shorts or wearing my bra on the out side of my tee shirt....just anything to make him laugh......he so seldom laughs.

My heart and hand as I write this post are heavy with thoughts of you all and what lays ahead.....it will be the fall season, where everything closes up for awhile until spring, when a renewed insurgence comes alive.....so hopefully that will be what will be the state for you Passages and Jitters99.......closing up for awhile.......and with time, you both will come alive with a newness for life.... ...hugs, and [prayers to you all here in this land of PC and it's curse to the men in our lives.......

Thank you,tednsal. I agree, nicely said.
I write this in the hospice room - he is sound asleep in his bed, I'm in the pullout sofa. It's the first night I have felt really ready to stay.
Tomorrow his mom and sister arrive from Florida. I may have panicked yesterday. He was so different from just the day before: sleeping but then almost writhing in pain. And no doctor to talk to. I made a big stink about that. But i really felt I was losing him so called his family and mine, in tears.
Today, a little better. He seems more comfortable. Doctor did rounds this am after I was told yesterday she would be in the afternoon when i came. I did make a stink. And she called finally around 2:30.
So now I have information. It's been a dance to get the meds right but they feel they are close. He was more alert today and less in pain. But now he needs assistance with eating which he isn't really doing.
My brother tells me this is my husband's journey and I can support him in this but need to be sure I am ok. I think Jitters and Passages learned this.
The goal is to get him comfortable and to get him home. That may happen on Friday! I hope so but what is important is his comfort - no pain. So the meds have to be right and then managed at home which the doctor said they could do.
Met the social worker today - very nice guy and offering all sorts of help.
A therapy dog came to visit - he loved that!
Most of the nurses are just great, there's one I do not like. Like all the aides.
There are great clumps of time where we don't see anyone - it is so peaceful. And he sleeps.
So tomorrow his mom and sister. And then one of my sisters comes on thursday.
I have been loyal to this thread and appreciate the support and care. It helps.
Best to all.

Warrior ladies, it is so good hearing from each of you. I got inspired today after reading Jitters post for the weekend and got my fall decorations out. I love fall, with the changing colors and the cooler evenings! Glad to hear things are moving along for you Jitters. I feel the same way about being a caregiver. Feel like that has been what I have done my entire life!
Passages- good to hear from you as well. So much to do at this time, I'm sure. I am so glad you are continuing to check in with us! Thank you for doing that. Those of us right behind you, need to hear what you and all the other ladies have to say!
nhwife- I didn't realize they would have your husband at a hospice facility while they jumpstarted him on his new care. I sure hope he gets home quickly and that all goes well with your company.

Well said smo1 . Many of us need those words of wisdom, even looking back like Jitters. Hearing from the caregivers who have walked the path before us lets us know what works and does not. Thank you for your latest posts.

Passages (Jane),

I usually stop by this topic at least weekly. I haven't been on HW as often lately.

I am so sorry to hear about Mike. Thoughts, prayers, hugs, and love sent to you and yours.

Nhwife (Susan),

The same thoughts, prayers, hugs, and love are being sent your way as well.

All of you ladies have been a great inspirations to so many of us. I am at a loss for words.

All of you came together, stayed together, and in such a short time period of each other...watched your PC Soldiers take to rest.

May God Bless ALL of YOU, as you and yours continue to journey forward.

Jitters,
Would it make sense if I told you I would rather die from a predictable accident than to let PCa get me?

Passages,
I don't know what to say now, but if I'm here and able, I'll show up next spring ;)
You already know I'm not much for the written word.

I guess this is the beginning of Day 4.
I am doing ok. I got lots of little things done on Monday, like arranging for the cremation. In the evening I received lots of phone calls, all good.
Yesterday I did my first food shop - that was hard. Walking by all the foods I used to buy to please him.
Both days I had to get out in the afternoon to walk - the house was suddenly too small.
More good phone calls last night - from one of my best friends of 57 years and my aunt.
Today I am going to go to work in the afternoon - payroll has to be done! It will be good.
Tomorrow I am meeting with another good friend who is a minister and we are going to talk about the memorial for Ed.
That is coming together quickly and nicely. It is going to be on October 14th in our yard amongst his beloved arches.
Here is a link to his blog on how he built those arches:
http://centerstone.wordpress.com/
I had imagined maybe 50 people but it is becoming rapidly apparent that I have no control over this figure! Lots of people want to come and who I am to turn them away?
I have also learned I can get a plot in our favorite cemetary in town, right behind our house!
People say I sound strong and in control. If only they knew....
But I am doing OK.
The posts from Jitters and Passages have helped me enormously.
I hope for the best for our other warrior women.

Nhwife - It certainly is a process and glad you have a friend to help you with a memorial and you don't have to rush it. It probably helps to have job and stuff.
Jitters and others, it is surprising when it will suddenly hit you. Odd times and places. I think there's a part of us dealing with it, another part may be denial; but think it's a form of survival. Not feeling good, not having him here for it, just makes me a bit more vulnerable and less strong.

Started a grief support class today. Not sure if it's too early.
Yesterday called the urologist office to tell them some problems i was having. they said my issues had nothing to do with stones, stent, or infection and told me to go to my Family Dr.; where i discovered they had discharged me with an ineffective antibiotic per the culture. I repeatedly told them I just had a culture and they should check with Dr - can get it online. Sorry for whine, just frustrating. It's nothing compared to what Purgatory and many of you have gone through. It's just they were so worried about sepsis.

I am blessed with all the people who care, loved him and you all who listen.

142...completely understand your statement. The cancer journey is such an emotional rollercoaster and so many adjustments.
Susan I am so sorry to hear of Eds passing. Even reading how close it seemed to be it is still to hard to read we lost another.
I had a friend here from Vegas that took me for a wonderful get away to Boston for 4 days and three nights, spas, wonderful tours, meals, and every time we returned to our hotel I still wanted to call Jim and tell him I was safe and having a good time. While we both had a great time together, we shared so many tears just realizing neither of us were ever going to see Jim again. She left this morning and I kept busy all day cleaning and again fall decorating, and then evening sets in and it hits me all alone yet again and it still hurts. Went grocery shopping and its still a struggle wanting to buy what he liked to eat. My daughter says I'm killing my dog with food, and I think she's right, makes me feel better to feed everyone but me. Went to my second support group meeting, it's very discouraging to see so many struggling after a year and several 2 years. I felt so strong in group while I was there, but tonight not so much...very sad and even some anger..

For me right now keeping busy is the best medicine and I have tons to do over the next 3 weeks preparing for Jim's birthday celebration next weekend, then heading to Vegas for a wedding, hotel and spa with my daughters, and a dinner with a group of retired friends from my husbands old job....now that one will be hard, but I am going anyway. Then packing up his things at our condo and visiting the house we still own and lived on for 31 years, that too will be hard, but our renters are our very good friends too. Then after that a concert to celebrate all the hard things I did....even going to a dog show for the dog club I was very very involved in...busy next two months actually...hope everyone has the best weekend they can and take special care of yourself warriors..

My mom always said the hardest thing was to come home to an empty house - that was much later after my sister had grown up and out.

As I said earlier, I tried to text him to let him know I was in the hospital last week. Yesterday I couldn't control my feelings when I was in the recovery room again without him. The tears just flowed. He wasn't there and will never be there. The nurse was concerned, when my sister came in; she explained that I had just lost my husband.

The book for the grief group is The Grief Recovery Handbook by John W. James and Russell Friedman. It mentions that just keeping busy is a. Distraction. "It does not alter the fact that you have to take direct actions to complete the pain caused by loss". I think it will be helpful. There are a number whose loss was a while back. Some interesting thought and ways to move forward, yet deal with the loss. This is a 12week class. Hopefully by Wednesday that physically I will be feeling better.
Take care my fellow journeyers

Beejane, I was thinking the same thing yesterday. Going from my parents home to our married home. This is the first time in my life I have lived alone. Strange coming back to an empty house. One of the biggest adjustments was not having to hurry to do errands to hurry home so Jerry wouldn't be alone too long. Somedays I would be crying in the car knowing there was no need to get home. But the passing days are getting easier. I still have our pups and cats who do depend on me and are a living presence in the home. I have three great kids who are my great support. I find myself capable of handling the home maintenance, not as well done as Jerry did, but I can do it. Tomorrow I am replacing the kitchen faucet.....wish me luck. Not having him here to share things with is the hardest, accomplishments don't seem to mean as much without that. Need to get past that one year mark, right now I find myself thinking of what we were doing last year at this time....the special days, the firsts. Working past the "ifs". If we had done that, if we had tried this, if we had caught it earlier. The ifs will break your heart. I have come to accept that we did the best we could, I have to accept that to move forward. So the tears still come, how sad if they didn't. How sad if no one mourned your loss. This has been such a year of loss of our warriors. I pray that from all this that they will find better ways of destroying this beast. So to all my fellow warrior ladies, know that you are all in my thoughts and prayers and that you find peace in this journey you are on.