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Posted 4/26/2011 5:52 PM (GMT 0)
Oh yeah

I forgot he has broken out in a rash on his back and is constantly iching and digging at his back. This is normanl I think when your doing treatment right?
Posted 4/26/2011 8:48 PM (GMT 0)

Hey, Steph.  We were trying to remember the other day who it was on the trial.  Guess it was your guy.  So they are going to keep him on the combo for 48 weeks?  I've heard so many things about the new treatment protocol I don't know which is correct.  At any rate, it will be delayed for me since the liver cancer has returned.  sad

I'm very pleased to hear that your guy is still showing clearance of HCV.

I really can't answer your question about the rash on his back.  Maybe he's developed an allergic reaction to one of the meds?

Don't be a stranger.

Hugs,

Connie

Posted 4/26/2011 8:57 PM (GMT 0)
Connie

 Iam so sorry to here about the cancer. And yes Iam still here hanging in there one day at a time. The treatment is still working and 9 months left to go just like having a baby on my hands most of the time. So what happens to you know that it has come back?

Posted 4/26/2011 9:40 PM (GMT 0)

Steph, it showed up on a routine 6-month MRI.  I have a thread going called MRI NOT okay.  I will get the results of all my scans (looking for metastases) this Fri., and what my options are, if any.

Hugs,

Connie

Posted 4/26/2011 9:46 PM (GMT 0)
I will pray for you Connie you are a great lady and have helped me with so much in such a short time tongue
Posted 4/26/2011 9:56 PM (GMT 0)

Thanks, Steph, I appreciate that.  I have gotten much more than I have given in this forum, though.

Hugs,

Connie

Posted 4/28/2011 4:10 PM (GMT 0)
Good days and Bad days, I quess this must be another bad day. Just wanted to vent alittle as a care giver to my bf today. Most of the time when I see him he really dose not act like he wants me there. It makes  me feel bad then I go back on here and read some of the post that people have sent me. I keep reading its not you but it still dose not make me feel like its not. It makes me really sad inside and I want this to be over with but the end is so far away right now 9 months left to go. I realize its hard to be pleasent when your not feeling good and its no excuse to take it out on the people who are standing by you through all of this. Thank god I have a program today it takes me out of my head even if it is for just a short time. I wish so much that this would be the relationship that works most of the time, but the truth is when I go see him I end up leaving early because all he wants to do is pick at me. I am so unhappy alot of the time and I really dont know what its like any more to have some one just be nice to me. I am sorry Iam just in alot of feelings today and wanted to talk  thank you for listening.
Posted 4/28/2011 6:27 PM (GMT 0)

Steph, you are indeed fortunate to have a program to turn to.  Remember the saying "Let Go and Let God"?  You should consider it.  This doesn't mean to stop being there for him and caring about him, but to try to emotionally remove yourself.  This is his battle--with help from his HP and the doctors.  Also, I know I really don't want to see anyone when I'm not feeling well.  It takes too much effort.  Make your visits very brief.  Let him know you care and ask if there's anything he needs or wants.  And remember to take care of yourself.

Hugs,

Connie

Posted 4/28/2011 8:12 PM (GMT 0)
Connie,

   Your such a blessing to me. And I really needed to here let go and let god it made me think, I forgot to pray today. And yes this is his battle with the hepc not mine. I feel much better as the day is moving on and yes Iam letting go. Just put a phone call into my sponser and let her know who I was feeling today. Thanks always for listening on here.

Posted 4/29/2011 10:28 PM (GMT 0)
Well,l

Yesterday was a terrible. When I started to talk about how I felt he went straight on the defense. My feelings really were not important enough for him to listen. I ended up leaving  again pissed off and upset. Then talked to another recovering addict that suggested counseling so i sent the text and asked if he would be will to go as long as he is doing treatment. He tried to tell me iam to controlling and wanted to try and make things better all the time. I said well at least one of us is trying here. So furstrated with this. This weekend Iam choosing to not go and see him for once i would like to have a peaceful weekend with no fights. Iam going out to dinner with my sponser tonight and setting boundaries for myself. Trying to love some one who is doing treatment really sucks. Iam so grateful i never stuck a needle in my arm to get loaded.

Posted 4/29/2011 10:51 PM (GMT 0)

Steph, I'm glad you are having dinner with your sponsor.  Also that you are pulling back some.  You need to do this in order to take care of yourself.  He's telling you that your efforts to help are irritating to him, so just let him wallow for now.

Hugs,

Connie

Posted 4/30/2011 12:10 AM (GMT 0)
Steph,

My Mike was AWFUL on treatment. They tell you about the nausea and itching and maybe this and that. But they don't prepare you very well for the emotional ups and downs the patient is going through. Mike was miserable and cranky most of the time. And depressed. He made me cry 5 times a day and it didn't seem to care that I was upset. He was just an ogre. One day, while screaming at me for driving poorly, he jumped out of the car while it was still moving....I had gone to the wrong gas pump. Good grief.

But after the treatment was over, even though he didn't clear, he got better. Much better. For 7 years he was pretty good. Not perfect. But he worked, had fun, wasn't cranky, enjoyed the family. Was mostly normal but for some changes in his attention and some Hep C "fog." They told him never to drink again, but he did. Daily.

And so he went down hill until now, when he has cirrhosis and end stage liver disease. Without transplant, he wont make it much longer.

Oh how I wish he had kept sober after treatment. They told him he had a good 15 years on that liver...but he used it up in 7.

Sometimes I still feel angry about that. But he has been sober since September and while really ill, he is looking forward to his transplant. Finger crossed, etc.

He is working his AA program and seeing a counselor now. Which is really good.

As he went downhill again, the crankies have returned. He is easily cross with me, but I don't think he means anything against me. I think he just doesn't feel good and is cranky with his life. I am trying to let it go...I am wiser now and try not to take it personally.

Sometimes I have to put my foot down. But mostly it is going okay. I feel really sad knowing a transplant is his only chance. I have loved him for 30 years. I don't know if this happened when we were young if I would have had the strength to face it day by day.

Stay strong, take care of yourself. And work your own program. It is important. Carol
Posted 5/2/2011 3:18 PM (GMT 0)
Thanks so much Carol for your words of wisdom they are most up lifting to me. I dont really think they understand what its like to be a care giver or have a loved one with hep c or liver disease. It is very tough on us to love some one who cant love them selves at that moment. I dont think he will want to do treatment again if this dose not work for him. And yes thank god I have a very strong program just got my clearence for a jail panel again. Getign out of self is always a good idea and help a new comer in recovery. Some times I think they are helping me more than I am helping them. This weekend was good I kept my time brief with him over the weekend and hung out with the girls in recovery. It funny you get so rapped up into trying to make them feel better or trying to make it better you forget about you.
Posted 5/2/2011 6:18 PM (GMT 0)

Steph, you are definitely on the right track.  Keep on keepin' on!

Hugs,

Connie

Posted 5/2/2011 8:24 PM (GMT 0)
Sounds like ur working ur program... and realizing that exposing yourself a little at a time to the negativity is best... good for you... it's the loneliest feeling in the world loving someone going through this... cuz they're fighting the battle and ur... still in the relationship.. fighting in a different way... it's tough... but ur coming along girl... just keep doing what you need to .. one step at a time.. one day at a time... u know that ole Chinese proverb about a journey begins with one step.. or something like that... take care... praying for u.. Sandi
Posted 5/16/2011 6:59 PM (GMT 0)
Good news the HepC is still showing no signs of returning. His attitude is getting better and things kinda feel back to normal for a change. I think the court case for the accident he was in also could not have come at a better time.
Posted 5/16/2011 9:58 PM (GMT 0)

That's really good to hear, Steph!  Be sure to keep us updated.  As always, remember to take care of YOU.

Hugs,

Connie

Posted 5/27/2011 3:41 PM (GMT 0)
Things are still so up and down with the attitude. I still feel like Iam the only one is this relationship most of the time. The hep c is still showing no signs and there is still 6 months left of treatment. I cant understand what its like to be doing treatment but i do know the effects it has on loving some one who is and that sucks. Sometimes i feel like iam not even there.
Posted 5/28/2011 12:15 AM (GMT 0)

Steph, keep remembering to Let Go and Let God.  This is your guy's battle to fight, not yours.  Remember that it's the meds talking and not him.  But don't allow abuse of any kind.  Set your boundaries.  Take care of you.  And hopefully there will be a light at the end that will set you both free from the nastiness of treatment.  Great that he is still cleared of the virus!!

Hugs,

Connie

Posted 6/8/2011 5:51 PM (GMT 0)
BF went to doctors on Monday stiil no sign of hep c and he is still working while doing treatment. He dose get tired easly but everything is still going well thank god. Just wanted to check in and let every know that things are still good. His temperment is getting better and now we are on the down slope of the treatment.
Posted 6/8/2011 6:35 PM (GMT 0)

Steph, so good to hear that things are getting better.  Also wonderful to hear that the virus is still undetectable.  The big test will be when he completes treatment.  Wishing the best for both of you.

Hugs,

Connie

Posted 6/8/2011 8:56 PM (GMT 0)
How you doing Connie are you hangin in there? Ive been praying for you
Posted 6/8/2011 9:36 PM (GMT 0)
Steph-glad that you have good news to share. When will the treatment be completed?
Posted 6/8/2011 9:47 PM (GMT 0)

Steph, I'm hanging in there.  Read my Transplant Evaluation thread for updates. 

wink  

Hugs,

Connie

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