Wondering how you and your family are doing today. Know you are in my thoughts and prayers daily.

Donna

We are trying to hang in there. Neil is pretty confused most of the time but is not in pain. I am struggling with making sense of this needless suffering. I'm also trying to hold on to my faith in God-I feel it waivering right now and I don't want to go down that road. It's so hard to see someone who had struggled so hard and fought so long spending the rest of his days in a bed not knowing what's going on around him. So many wonderful members of Neil's local union have come by to say that they owe their jobs/ways of life to him and I hope he realizes this on some level. It's just so unfair that someone who has given so much should have to die like this. I do, however, get strength from coming to this site and reading everyone's posts. It helps to know that people i haven't even met face to face are so caring and compassionate.

Sue

Sue,

We are with you. I have been checking several times a day and praying for you. Your feelings are normal. May your faith in G-d stay strong and continue to sustain you at this time.

Malka

Sue,

Neil's reward for a life well lived is soon to be. I think that is where you have to go while getting thru the next days. I love the hymn, "Great is Thy Faithfulness." I sang it to myself many times during and after my father's death.

Wishing you strength,

Deb

Sue

Please don't let this terrible DEMON of a disease win by not only taking Neil but stealing your Faith. None of us knows why bad things happen to good people, but they do. Lord knows, if anyone deserves to feel down, you do. I'm fixated on cancer song lyrics today so here's one for you when you feel like it's all too much with too many balls to juggle.
[quote]
Well hey, even the greatest juggler drops a ball or two
The question still remains what then does one do?
This ball got too heavy and I dropped it for a sec
Good a time as any to do a little check
God knows I ain't superman - Never claimed to be
I must confess this was a test I thought was behind me.
Now, dragons have a way of creeping up on you
Giving you some time to figure out what you will do.
But demons are a different beast and catch you unawares
They sting the soul and make fear become your only care
DAMN those demons and the speed at which they fly
You think they're gone but then they're back to spit into your eye.
[/quote]

Sue,

Stay strong and don't let this make you loose faith in God.

I don't know why...But, I have also been listening to songs that mean a lot to me and have been really really taking them to heart more so then ever. The one song that has hit me a little hard but in a very good way is "Lean on Me" by Bill Withers.

Stay strong

http://www.youtube.com/watch?v=2Wpof8s5ZTg

Sue. Thank you for taking the time to post. We are all concerned and it was good to hear from you and giving us an update on Neil as well as yourself. Everyday, all day, you all are in my thoughts. I can't seem to muster out the appropriate words to say to you. We all love you and care about you. Claudia

Sue,
I think of you and Neil daily and your thread is the first I check when I log on. At this point I just hope the end is soon for the both of you and your kids. I have no magic words to make this better, but just know that you and Neil are in my thoughts daily. Take care of yourself.

Eileen

The experience that Sue is going through pushes your faith in everything to its absolute limits.The only thing you know you can trust is yourself,and the knowledge that it will inevitably end.I think in some ways it takes you to a point that when that end comes,you are actually relieved its over,but the anger at the unfairness of the nature of that end takes much longer to leave.
It is the experience Sue is going through and the one i went through,that highlights the reason why just about every one on theses boards who has a partner,uses the phrase "we" when talking about treatment.It truly is a disease whose effects torture the mind of the sufferer and the carer equally in different ways.

Sue you have been noble and courageous throughout and no one could argue with how you feel right now.

take care
liz

Sue, You and Neil are in my thoughts and prayers! Neil is lucky to have you as acare giver and partner thru life!! Semper-Fi Bob

Sue
You are a wonderful wife, mother and caregiver. Neil is very lucky to have you by his side. Please dont lose faith. I know this is awful for you and your family. Maybe Neil is fortunate not to know everything right now. He is a very strong, proud man, just remember that. Im sending lots of prayers to you.

It is the hardest and saddest day when you have to watch someone you love lose their battle. It did come to a point when my brother was dying, that I wished it was over. I felt guilty for thinking that. I couldnt bear sitting next to his bed where he was fully sedated, not knowing I was even there holding his hand, and just waiting for him to die. I knew it was going to happen and when it did, I felt relieved, not just for me, but for him. He was no longer suffering, he was no longer hooked up to machines.

It doesn't make it easier, because now you deal with the loss. But in the end, I know we took care of him, loved him and stood by him until the end.

Sue, you have shown so much strength and courage, probably more than you think you had! His life will become an inspiration to you and your family. You will have even more strength and courage!!

Take care of yourself . . . I am thinking of you all.

Susan

Sue,

I feel so lucky that I got to meet you and Neil last fall at Susan's walk. You are both such strong people. I am sorry to hear what you and Neil are going through. I am glad to hear that he is not in pain and I'm sure he knows how lucky he is to have you as his caregiver and loving wife.

You, Neil and your entire family are in my prayers.

Jerry

I hope in all this concentration on the cancer victim and his plight, you don't lose sight of the fact that when that part is over, the rest of your life begins -- I hope you are getting some therapy now for yourself and not just putting it off until afterward -- It will help you get through this part on a more even keel.

I came home emotionally spent last night and came to this site for some help and that's exactly what I got after reading all your posts. Thank you all so much. I'm very anxious at night because I hate to leave Neil when he feels most vulnerable even though he had an aide that stays in his room with him. She is very nice and last night i found out how capable she is. She saw a pill in his mouth that the LPN had given him but he didn't swallow as it was stuck. That woman probably saved him from choking on it later. Needless to say i felt better that she was there. I guess we have to take our victories whever we can find them.

Sue

You sound more relaxed. As much as can be expected at this point anyway. I'm glad to hear you have found some competent help to ease your load. Know we are all thinking of you and praying for you each day.


Donna

Dear Sue, All along, we have talked about the fact that you are strong enough to meet whatever challange has been asked of you AND you have proved that daily. Hopefully, Hospice is keeping him as comfortable as possible. Wish I could be there to hold your hand -- please know you and Neil are in my thoughts and prayers. Amy

Sue - my thoughts and prayers are with you and your family. Take care of yourself....Paula

I don't know where to start. I've been crying for 24 hours. I can't stop. So much for being strong. I'm crying because he is suffering and depressed. I'm crying because I'm going to miss him. I have so much to say and so much has happened this past week. When I look at him, I stare at him. I look at him and he is not the same man that he was a year ago, not even two months ago. What about tomorrow, I wonder ? Can I get through all of this, I wonder ? Should I put him through more Erbitux and then the cyber knife ? How do I know when he's had enough ? He sleeps most of the day away and only taking 1500 calories thru the Peg. How do I know when I need hospice ? He is still able to walk from bed to chair and watch TV. He can't talk because the cancer is now in his jawbone. I had a scare Weds evening, the day of his Erbitux treatment and had to call the ambulance. I knew he was up and I was waiting for him to walk down the hallway. He never came. I walked into the bedroom and he was laying on his back with his legs dangling. He couldn't walk and he was wetting himself. His blood and urine checked out okay and he was discharged. I thought it was due to the Erbitux as it was his first treatment, but the doctor said that it wasn't and thought that it was probably the "I.V." that they give him before the treatment. Can't think of the name right now. Think it began with a "D". I try not to cry in front of him, but I did last night and he said to me "I know I'm dieing"....His mom lives with us and she had 3 sons. Two have passed (so sad) and now she has to see him so sick. I wonder what he's thinking ? I don't ask because I'm afraid of what I might hear. I hate this disease..........I want to scream ! he was so active, hard worker and built us a beautiful cabin overlooking the allegheny river. That place was his life. He worked so so hard and now it's like a memory to him. would I ever be able to go back there without him.? Why do I act like he is gone ? He is still living. I'm really having a difficult time and still sobbing while typing this. I'm sure it's all jumbled up and makes no sense whatsoever--------and I'm sorry. Even though I have a wonderful family with lots of siblings and lots of support, I try not to cry in front of them and kinda hide my feelings, but here I LET IT ALL OUT.....Love you all. Claudia

Claudia, I'm new here and haven't posted very much compared to others. Your post is so heart wrenching and has touched me deeply. I know other caregivers on the forum are shedding tears over what is happening to you and your husband. Do the doctors' think this treatment will give him more time and a remission? What are the actual odds of this working? I don't know what my husband would do under these circumstances, wanting to do everything possible, but only if there is a good chance of survival.
Can you get him to your cabin? To look over the Allegheny river from a home he built out of love with his God given talent seems like it would be so comforting. Even with a big family, the caregiver is still alone with the worry, love and responsibility to get everything done and keep it together for our loved one. Please keep posting and let it all out. You are making plenty of sense and I, too, would be crying on the inside and out from the hurt, frustration, exhaustion and sadness... Geri

Thank you Geri. I was ready to jump in bed but thought I'd check the board out first, and there you were like a sweet little angel saying sweet things. Maybe now I can get some rest. God Bless ! Love, Claudia

I'm no expert, but I suspect it's quite healthy that you are in part acting like he is already gone -- Apparently you are adjusting to the reality, not just walking around in denial -- Sort of the same feelings we get where we are grieved to see someone die yet glad the ordeal is over.

Claudia, If you ever want to send a personal message, I would like to keep in touch with you. So far, we are very lucky with Richard's prognosis. We have decided that when he's through with treatment, we are going to do everything we want to and live in the moment as much as possible. All the doctors are positive about a favorable long term outlook, but I've learned from this forum that there are no guarantees. I pray everyday for the strength to handle whatever happens and for the good Lord to hold us in the palm of his hand. Also for all the others suffering with this dreaded disease.... Blessings, Geri

Claudia,
I'm so sorry your husband is not well. I talked with you a while back. Life is not fair sometimes. I hope your husband may find some peaceful days.
Rett

Sue,

I'm sure you know how important your role is in Neil's life. The people who support me are my saviors and I'm sure Neil feels that way about you. You sounds like a strong woman and we are all here for you. You are in my thoughts everyday.

Suzanne

Geri. I sent you a pm and it disappeared. I can never figure anything out here. I'm not too computer savvy and I'm always doing everything wrong. I'll try again tomorrow. Claudia

Rett. Thank you. How is your dad doing these days ? I've thought of you often. I've calmed down some within the last week. I was just having an awful day.