Topic: update on Joe

I am just catching up on this site after being away to visit our daughter in Phoenix for a week.  It did not go so well.  Joe had chemo on Thursday before we left on Friday and I knew he would be exhausted on Sat. and Sun but he never perked up the whole week.  It was all he could do to get from the car to the restaurant to eat.  We brought in a few meals and microwaved some leftovers but all he could do was sleep and watch T.V.  the walk to the pool was even too far for him except one day.  He says it is a chore just to get up each day.  Physically the cat scans show no progression of the disease but he has mets to liver, lings and spleen.  He has no pain but no desire to eat either.  he probably lost about 5 pounds this last week.  I think emotionally he is just tired of the fight.  We talked about this and he agreed although he said he didn't want to die yet.  I have struggled for a few months on whether to keep pushing for exercise and getting together with friends.  He seems to be detaching so much.  In the house, it feels like I am already alone.  I talked with our daughter Karen who was hoping he would be around to walk her down the aisle(but that won't be happening until next year probably) and we think it is time to let go and stop pushing.  How do you know?  I know you aren't supposed to ask how long they have but when Joe was out of the room two weeks ago, I did ask the oncologist because his ascited is getting so bad.  He said he thought 6 months.  I don't think it will be that long.  I think once you shut down emotionally your body just follows suit.  We are Christians so we know he is going to heaven - it is just the time from now til then that is so hard.  I read about John who doesn't want to stop trying.  I wonder which is harder.  No one in this situations has it easy.  Jeff you being able to share both sides is really helpful.  I just started going to a caregivers support group and I think that will be helpful.  I also wonder about stopping chemo and see if he regains some strength.  He has been battling this for 26 months  so I know we have been blessed by the time we have had but it never is enough is it?  Just needed a place to vent and have people understand what I'm feeling.  Thanks for being here.  Mary Anne

Re: update on Joe

Dear Maryanne,
It's so terrible to have to watch your loved one suffering - I can feel the pain in your words. I think that there's always a chance that taking a rest from the chemo may help Joe a bit -- chemo really depletes the immune system and his body may need time to regenerate and then maybe he'd have more energy.
But also, as you said he is detaching himself, I can say that in the case of my mother, that was a sure sign that she knew her body wasn't going to go on much longer. She didn't want to talk about it or acknowledge it, but she knew. If this is the case with Joe, you'll want to make sure you have a backup plan like hospice care in case you need it.
It's a great idea to go to a support group - you sound like a very wise and caring person. I'm sure Joe appreciates it now more than ever. Just take care of yourself, too. I'm so sorry it looks like he won't be able to get to your daughter's wedding. But I do hope things get better, and there is always hope.
Sending you hugs through cyberspace,
Joyce M

3 (edited by JeffG Sun, 14 Sep 2008 20:26:19)

Re: update on Joe

Mary Anne,  I agree whole heartedly about the emotions.  After a while you get so tired, but you keep on pushing to protect your loved ones, from the emotional pain that you know they will go through.  I've only recently realized that no matter what I do,  My family will have to go through the grieving process. Some more emotionally than others.  It'll be a sad time.  I guess it's all called love.  I just don't fully understand why the dying patient has to feel a sense of guilt. We didn't ask for this disease nor the emotional pain it causes our loved ones. I know eventually I will understand, when the time is right.  Mary Anne, May god bless You, Joe and your Family while travelling the path to greener pastures.

God Bless,
Jeff
P.S.  Thought I would mention, since stopping chemo and drinking 2-3 Ensure plus a day.  I have felt really good and lots of energy.  My vitals have all turned to normal.  Even so, I still have to try radiation again for the pain, just because it worked last time.  I guess this instinct to keep pushing is pretty addictive.

Take it to the Limit,One More Time! (Eagles)

4 (edited by marions Sun, 14 Sep 2008 23:54:04)

Re: update on Joe

Mary Anne

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: update on Joe

Mary Anne,

I have to agree with everyone else. In my husband's case it went so fast, 7 weeks, that we did not have time to see any of this or think it through. Now that I have come to this site & can start to see things more clearly, although his progression was fast, he did start to detach towards the end. He also seemed to feel guilty for what the rest of the family were & would have to go through. I now have feelings of what else could I have done or said differently. The people here have given me strength & support. I think you are right on with everything you stated about your situation.  Be glad that you had the time you did & be strong in the days that face you now.  My thoughts & prayers are with you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: update on Joe

Hi Mary Anne!  So very sorry to hear how your life is changing so rapidly! Jeff stated, "I just don't fully understand why the dying patient has to feel a sense of guilt."  I kind of assumed this with Teddy and that is why I NEVER let down in front of him as he would feel he has failed me. Although he has not progressed to the point of Joe, we very well know the outcome of all this and what is ahead. Sometimes I wish we all lived in the same place and could all be running around helping each other but we have this site to vent and that is pretty good. Stay strong and somehow you WILL get through this. I cannot believe there is any greater test than the one we are all going through!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on Joe

Dearest Mary Anne,

I know what you are going through but just a different side of things.

John refuses to SEE himself. He's so thin and weak, refuses to stop trying to drive, ( We had a BIG discussion today ) and says he is getting better everyday. I really think he may be losing his sense of reality.

Your Joe is doing like my Mom when she was dying. She too started to detach. I really think Joes way is the better way. I say to you...show your love every minute, don't push Joe anymore for treatment. If he starts to feel better he may want to start treatment again. Maybe he is just tired of this fight and is looking forward to the peace that is ahead of him. Let him know it's ok to go.

I'm the first born and my Mom died soon after she called me to her bedside and tried to apologize for not being a Beaver Cleaver Mom. She had a lot to get off her soul and heart. I told her there was no reason to apologize and as far as we were concerned she had nothing to feel guilty about. I actually told her it was ok for her to go, that we would be fine and we loved her with every ounce of our being.

I send you all the love I can and the strength to let Joe go if that is what he needs to do.

Charlene

Re: update on Joe

Hya Maryann,charlene and Jeff

These things you have written here are so true.
So many different aspects to visualise throughout the journey of cc.
Sometimes it appears that there is time to stop and acknowledge these things and other times it is a case of dealing with the most important issues as they arise.
With hindsight as a carer for Alan I hope he didn't feel guilty as he did tell me to stop being so angry. I replied to him that I was'nt and he said it was like a light shining from me. I knew I was losing him so suddenly and my heart felt as if it would break into tiny pieces.
He did not push to do more but neither did he pull away from his friends, they were with him night and day. His friends were coming to see him and turning away in tears at how quickly his body had deteriorated. I had to help  them out to sit on the garden wall and tell them it was ok for them to be like this. Two days before he walked up to his dad put his arms around him and said"dad I love you".
I feel so much love for you all and I to wish I could be nearer physically to all of you, but I am sure here in my mind allways.
All of us,patients and carers alike I am sure do the greatest feat of our lives.

love and light to you all teresa.

Whilst I am here, an update on my husband of 49 years. Not CC.
He now only has 5 % kidney function left.
This is due to having diabetes for 55 years (2injections every day)
He is now in the final stages for as long as his body holds out.
He has been very sick of late and I have been told it it may only be weeks or months, but not many. I am truly a broken woman but have to do my best as a carer once again.
If I am not here for some time please forgive me, I will be thinking of you all.

U.K.Member

Re: update on Joe

Dear Teresa,
Sorry I didn't start a new thread - I just had to jump in and say how sorry I am about your husband. I knew he was in ill health, and it seems more than one person to bear after losing your son. You have always had the right words to make me feel better on this board, and I wish I could do the same for you. I can only wish you peace and comfort in your final days with your husband.
THinking of you,
Joyce M.

Re: update on Joe

Thanks so much for all you support.  Just when youthink things are going one way, they change.  Yesterday and today Joe has changed his outlook (after talking to our pastor) and now he says he will try and walk three times a week.  I told him how i didn't think I could push anymore and he said I shouldn't give up.  Has anyone ever experience Gemzar causing you to get so depressed.  I suggested he not take it anymore but he said he is afraid not to take it.
Teresa, so sorry to hear about your husband and so young.
Today I went to lunch and a movie with a good friend and it helped just to get out of the house.  The movie was bad but the time with my friend was great.  do any of you caregivers eat to relieve the stress and then all you get is fat? I usually swim for my exercise but have had a bad shoulder so haven't been able to do that.  But now I am going to walk with my friend and hopefully that will do two things at once.
It is an emotional roller coaster not knowing from one day to the next what the mood of the house will be huh? Thanks for being there  and answering me.  God Bless.  Mary Anne