Aa
My spouse and some of my friends just don't get what treatment means
I must be feeling like sharing today so tell me to shut up if I'm posting too much.
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
I've made the connection between my son's illness and now mine. We've discussed the topic but my wife is a pretty stoic woman who doesn't easlily show her feelings. Maybe this is her way of dealing with it, It's just really out of character for her to behave this way.
I think that she looks at me and I look healthy and am very active both physically and mentally. The mental thing of tx is the hardest for me. I had my driver's license renewed well into treatment the last time. I had that Interferon-glazed look. Several times at airports, TSA women have kidded that I'm much better looking in person. The Ribaviren didn't bother me much but Interferon absolutely sucks.
I pray that this is the last time that I have to treat. I also pray that the clinical trials will pave the path for a cure for everyone.
I think that she looks at me and I look healthy and am very active both physically and mentally. The mental thing of tx is the hardest for me. I had my driver's license renewed well into treatment the last time. I had that Interferon-glazed look. Several times at airports, TSA women have kidded that I'm much better looking in person. The Ribaviren didn't bother me much but Interferon absolutely sucks.
I pray that this is the last time that I have to treat. I also pray that the clinical trials will pave the path for a cure for everyone.
I didn't read any of the answers yet, because I was feeling so alone and just like you today...this is what I wrote in my blog this morning...you'll get the gist and understand that you're not alone in this...we're all in this together...you may want to let your wife listen to Llama Lashes and Grumpy Old Gits...I sent it to all my friends today too...figured, can't lose what you really don't have anyway...lol...maybe they just need to be educated more???
http://video.google.com/videoplay?docid=-5858401322519918178&hl=en
Copy of myspace blog
Well, how did this week go......do you want the real version, or do you want it sugar coated???
Monday I went to the researchers and was feeling OK...Cousin Fran came with me and my hubby...hubby runs out every 45 minutes to put the money in the meter, Fran is there with me as my support, and she has really been a Godsend.
OK...so I tell them my symptoms, I ask for copies of my blood tests, and for a copy of my liver sonogram that I had done the week before...
I'm not as happy with my blood results this week, my viral load is down to 289,000 which is a 1.33 log drop since day 1 of my treatment....some people clear by their 4th week...I guess I'm not one of them...but there's always hope...I will clear this virus!
...after my shot on Monday night, I went to bed to watch 24 and fell asleep before it ended again...no problem, I don't know if it's me or what, but I really have no patience for that show this year...it's not keeping my interest at all...but I'm not here to write about 24...lol
I woke up Tuesday morning with absolutly no, and I mean NO energy at all...OK...I can handle this I say, and I try to get through the day...I force myself to go to Costco the main reason being that I can get one of those roasted chickens, and some prepared foods because I can see this week is gonna be a killer to get any cooking done. That night I heated the chicken in the microwave, put it on the table, took the knife in my hand and proceeded to cut the chicken...to my surprise, after the second cut, I was all out of breath...geeze...it's been like that all day...do a little something, and loose all energy throughout my body....what else is there to do next but CRY...and cry I do...how the heck can we do this if I can't even cut a piece of chicken???
Oh, I guess you say "WE" oh, there's somebody else there with you...you have help then???
Yes, I have a husband, but he's sick himself, and is a great help with lots of things but cutting chickens isn't one of them...
OK, it's only Tuesday...I can do this...I am strong...I am a survivor...
All that sounds great, and somedays I feel like that, but most days I just feel like crying the last few weeks. Ohhhhhhh, the meds must be doing their job????
Take Tuesday, and multiply it all the way up to Saturday...that was my week...well, not exactly, because Wed I have to take my hubby to the doctors in the City...another failure on my part, because when I park the car and we walk to the doctors office, I get there and I think I'm going to pass out...all I can think about while we were there was the walk back to the car, and if I will make it...I made it back, but that was the straw that broke the camels back for this week....it put me in bed until Saturday morning...of course there was cooking in between, all done by me in 5 minute increments...why such small increments you may say...well, that's all I could sit up for each time...
Let me not forget the wonderful news from the endocronologist...I'm diagnosed with Thrroiditis and Hashimoto's Disease...I don't even have the energy to google it...she said to continue with the hep C treatment and to see her in 3 months, I don't need to be treated for it yet....
OK and if that don't top the cake add in a call from hubby's doctor, oh yes, he had a thyroid sonogram last week, he has a nodule on this thyroid...so the doctor proceeds to tell me that he needs to have a thyroid scan done because the nodule is solid and could be cancerous....
Do you understand how I feel yet????
Saturday I asked my hubby to help me change the bed, and we were just about done when the bell rang...GEEZE I say...as he goes to see who's at the door...all I wanted was to finish the bed, so I could lay in it, and this is holding me up here...
Then my prayers were answered
OMG it's Michael...my son from California....OMG....it's Michael behind that big bouquet of flowers....I held on to him, and cried until there were no more tears...this was just what I needed, I felt so alone the last few weeks, and I was thinking it's the meds making you feel that way, but in reality, it wasn't...I had no energy to pick up a phone...and to reach out to the outside world.
Enough about that....lets get back to my wonderful surprise...
Michael stayed until Monday night, got some lunch for us on Saturday, cooked for us Saturday night, drove us to a party on Sunday...and soothed my soul for the time he was here...I feel renewed! I can't thank him enough, and he will never know how far to the end of my rope I was when he delivered those flowers to me that day before Mothers Day!
Amen
Sorry for the long post, but I had to get this off my chest today too...
http://video.google.com/videoplay?docid=-5858401322519918178&hl=en
Copy of myspace blog
Well, how did this week go......do you want the real version, or do you want it sugar coated???
Monday I went to the researchers and was feeling OK...Cousin Fran came with me and my hubby...hubby runs out every 45 minutes to put the money in the meter, Fran is there with me as my support, and she has really been a Godsend.
OK...so I tell them my symptoms, I ask for copies of my blood tests, and for a copy of my liver sonogram that I had done the week before...
I'm not as happy with my blood results this week, my viral load is down to 289,000 which is a 1.33 log drop since day 1 of my treatment....some people clear by their 4th week...I guess I'm not one of them...but there's always hope...I will clear this virus!
...after my shot on Monday night, I went to bed to watch 24 and fell asleep before it ended again...no problem, I don't know if it's me or what, but I really have no patience for that show this year...it's not keeping my interest at all...but I'm not here to write about 24...lol
I woke up Tuesday morning with absolutly no, and I mean NO energy at all...OK...I can handle this I say, and I try to get through the day...I force myself to go to Costco the main reason being that I can get one of those roasted chickens, and some prepared foods because I can see this week is gonna be a killer to get any cooking done. That night I heated the chicken in the microwave, put it on the table, took the knife in my hand and proceeded to cut the chicken...to my surprise, after the second cut, I was all out of breath...geeze...it's been like that all day...do a little something, and loose all energy throughout my body....what else is there to do next but CRY...and cry I do...how the heck can we do this if I can't even cut a piece of chicken???
Oh, I guess you say "WE" oh, there's somebody else there with you...you have help then???
Yes, I have a husband, but he's sick himself, and is a great help with lots of things but cutting chickens isn't one of them...
OK, it's only Tuesday...I can do this...I am strong...I am a survivor...
All that sounds great, and somedays I feel like that, but most days I just feel like crying the last few weeks. Ohhhhhhh, the meds must be doing their job????
Take Tuesday, and multiply it all the way up to Saturday...that was my week...well, not exactly, because Wed I have to take my hubby to the doctors in the City...another failure on my part, because when I park the car and we walk to the doctors office, I get there and I think I'm going to pass out...all I can think about while we were there was the walk back to the car, and if I will make it...I made it back, but that was the straw that broke the camels back for this week....it put me in bed until Saturday morning...of course there was cooking in between, all done by me in 5 minute increments...why such small increments you may say...well, that's all I could sit up for each time...
Let me not forget the wonderful news from the endocronologist...I'm diagnosed with Thrroiditis and Hashimoto's Disease...I don't even have the energy to google it...she said to continue with the hep C treatment and to see her in 3 months, I don't need to be treated for it yet....
OK and if that don't top the cake add in a call from hubby's doctor, oh yes, he had a thyroid sonogram last week, he has a nodule on this thyroid...so the doctor proceeds to tell me that he needs to have a thyroid scan done because the nodule is solid and could be cancerous....
Do you understand how I feel yet????
Saturday I asked my hubby to help me change the bed, and we were just about done when the bell rang...GEEZE I say...as he goes to see who's at the door...all I wanted was to finish the bed, so I could lay in it, and this is holding me up here...
Then my prayers were answered
OMG it's Michael...my son from California....OMG....it's Michael behind that big bouquet of flowers....I held on to him, and cried until there were no more tears...this was just what I needed, I felt so alone the last few weeks, and I was thinking it's the meds making you feel that way, but in reality, it wasn't...I had no energy to pick up a phone...and to reach out to the outside world.
Enough about that....lets get back to my wonderful surprise...
Michael stayed until Monday night, got some lunch for us on Saturday, cooked for us Saturday night, drove us to a party on Sunday...and soothed my soul for the time he was here...I feel renewed! I can't thank him enough, and he will never know how far to the end of my rope I was when he delivered those flowers to me that day before Mothers Day!
Amen
Sorry for the long post, but I had to get this off my chest today too...
Tx is tough on everyone. On my second go 'round the family and I have subsided into a "don't ask, don't tell" attitude. It doesn't do me any good to *****, whine, moan or complain - they just don't know and can't fathom. On their side, this **** has been going on for so long that I'm slowing them down. It's a lousy situation sometimes and I'm in the 'dog days' now in which there's little to want other than for it all to be over - again.
When I was sick at home watching TV I surfed to a channel with a preacher on. He was looking straight at me when he said:
"You can get sick - but don't stay sick too long because people get tired of it. When you first go into the hospital people visit and send flowers and call you all the time but after 6 months you find yourself all alone because no one wants to be around you - they get too depressed being around you".
There I was watching TV and sitting all alone and I knew this preacher was on to something. That's just the way it is sometimes.
Mike
"You can get sick - but don't stay sick too long because people get tired of it. When you first go into the hospital people visit and send flowers and call you all the time but after 6 months you find yourself all alone because no one wants to be around you - they get too depressed being around you".
There I was watching TV and sitting all alone and I knew this preacher was on to something. That's just the way it is sometimes.
Mike
Thank goodness for forums and support like this one. No one can ever know the fear & hardship we confront to do this tx. No one. We all picked one heck of a path, didn't we?
Don't ask; don't tell. That may just be the solution.
My hope for Round #2 is to be done with this **** in 6 month which seems a lot more doable than 48 or God forbid 72 weeks which I've read a lot of here.
I'm feeling fortunate after reading the post above from the lady who had problems walking to her car. This time around I WILL FORCE MYSELF to walk ten miles per week on the treadmill, do or die. Off tx i run 15 miles + per week and it always clears my head and body....my theory is walking will suffice during tx.
My hope for Round #2 is to be done with this **** in 6 month which seems a lot more doable than 48 or God forbid 72 weeks which I've read a lot of here.
I'm feeling fortunate after reading the post above from the lady who had problems walking to her car. This time around I WILL FORCE MYSELF to walk ten miles per week on the treadmill, do or die. Off tx i run 15 miles + per week and it always clears my head and body....my theory is walking will suffice during tx.
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