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 was looking to see if someone posted that poem.
That was from a posting to cheer me up when my husband was being a bugar. It's
a little depressing,but it's true. I let my husband read that. What a slap in his face to realize what we go through.
A perfect poem. Helped me to know my pain was normal and that I wasn't the only one. Some get lucky, but so many aren't.
Thank you
Missy
That was from a posting to cheer me up when my husband was being a bugar. It's
a little depressing,but it's true. I let my husband read that. What a slap in his face to realize what we go through.
A perfect poem. Helped me to know my pain was normal and that I wasn't the only one. Some get lucky, but so many aren't.
Thank you
Missy
This is apparently a very big subject that alot of us share. I'm really sorry
for what your wife said. It could be very overwhelming for her to have you sick again. I believe it will work out for you. She'll come around and realize
you need her. Try to be patient and by all means let her know how you feel
and let her do the same.
My husband really hurt me in the beginning. I guess we both thought I'd get through this and in 2wks I'd be fine. I just didn't realize how insufferable this tx is. The point is, neither does anyone else. My Dr. put it out to us as if it were no big deal and within 2 wks I'd be fine. WRONG!
My husband has seen me go through this for 10 wks now. He sees me trying to get past the pain/fatigue/fevers. I really try and he knows this. Finally I got his understanding. I don't ask for a pity party, but I do expect understanding.
FEMALE/RIBA= Explosives
Because you've been through this before it kind of shocked me your wife stated
as she did. Do remind her of what you're going through and tell her your sorry
that this is hard for her,but this is something that has to be done and how important it is for you to be a strong person to get through this and to see her upset brings you down. You'll need all the forces you can get. This time you are going to win!
Your child,well that's a given. Lots of hugs! I don't know how old he is.
Teenagers get a little weird about that. Spend quality time with him as much as possible , as I'm sure this will help you feel better.
As far as your friend, again until you walk in our shoes, they'll never get it.
In the mean time you can come here when needed where we know what you're going through.
Be strong and stay busy 22 wks will fly.
Missy
for what your wife said. It could be very overwhelming for her to have you sick again. I believe it will work out for you. She'll come around and realize
you need her. Try to be patient and by all means let her know how you feel
and let her do the same.
My husband really hurt me in the beginning. I guess we both thought I'd get through this and in 2wks I'd be fine. I just didn't realize how insufferable this tx is. The point is, neither does anyone else. My Dr. put it out to us as if it were no big deal and within 2 wks I'd be fine. WRONG!
My husband has seen me go through this for 10 wks now. He sees me trying to get past the pain/fatigue/fevers. I really try and he knows this. Finally I got his understanding. I don't ask for a pity party, but I do expect understanding.
FEMALE/RIBA= Explosives
Because you've been through this before it kind of shocked me your wife stated
as she did. Do remind her of what you're going through and tell her your sorry
that this is hard for her,but this is something that has to be done and how important it is for you to be a strong person to get through this and to see her upset brings you down. You'll need all the forces you can get. This time you are going to win!
Your child,well that's a given. Lots of hugs! I don't know how old he is.
Teenagers get a little weird about that. Spend quality time with him as much as possible , as I'm sure this will help you feel better.
As far as your friend, again until you walk in our shoes, they'll never get it.
In the mean time you can come here when needed where we know what you're going through.
Be strong and stay busy 22 wks will fly.
Missy
I'm sorry you're not getting the support you need right now.
It must be overwhelming for your wife to consider having both you on treatment and caring for your son right now. I'm sure she feels scared and wonders how she can handle all this.
Going with you to the doctor and reading about this (perhaps on this forum) should help her understand that YOU'RE going through a lot right now.
Also, she needs to focus on the fact that after your treatment she will have a healthy husband to share fully in the bringing up and care of your son.
Treating for 24 weeks is not that long, it goes by quickly, and before you know it you will be through.
I'm sure you've talked it through, but perhaps talking to a counselor or therapist before you treat will help her express her feelings and fears, and she can get help putting everything in perspective.
But whatever happens, congratulations on going ahead and treating even in the face of these very real obstacles. You have every right to take care of your own health no matter how difficult it is on those around you. Keep coming here for support.
It must be overwhelming for your wife to consider having both you on treatment and caring for your son right now. I'm sure she feels scared and wonders how she can handle all this.
Going with you to the doctor and reading about this (perhaps on this forum) should help her understand that YOU'RE going through a lot right now.
Also, she needs to focus on the fact that after your treatment she will have a healthy husband to share fully in the bringing up and care of your son.
Treating for 24 weeks is not that long, it goes by quickly, and before you know it you will be through.
I'm sure you've talked it through, but perhaps talking to a counselor or therapist before you treat will help her express her feelings and fears, and she can get help putting everything in perspective.
But whatever happens, congratulations on going ahead and treating even in the face of these very real obstacles. You have every right to take care of your own health no matter how difficult it is on those around you. Keep coming here for support.
It's really tough dealing with this aspect of the disease. I think people understand and relate to cancer in a way they can't to Hepatitis C. Most people don't know what to say to someone who is doing treatment. Maybe they're afraid of saying the wrong thing or illness makes them uncomfortable.
miked-I run too, and managed to throughout treatment until the last 6 weeks when it got to be more of a shuffle. I knew it was time to start walking instead when I got passed by a walker one day when I was "running" up hill! It wasn't easy, but it helped to keep something in my life that was a part of my normal routine prior to treatment.
Good luck with your 2nd try for SVR.
miked-I run too, and managed to throughout treatment until the last 6 weeks when it got to be more of a shuffle. I knew it was time to start walking instead when I got passed by a walker one day when I was "running" up hill! It wasn't easy, but it helped to keep something in my life that was a part of my normal routine prior to treatment.
Good luck with your 2nd try for SVR.
I also want to say that I have great admiration for you and your wife. Dealing with one serious health problem is very difficult. I can only imagine what two familiy members with problems must be like.
You must be a very strong family to be able to handle that. I am sure that strength will work in your favor.
You must be a very strong family to be able to handle that. I am sure that strength will work in your favor.
Thank you for that. There is also a poem someone posted recently. :
If It Don't Show Today
I have had quite a few people
come up to me and say
why you're looking pretty good
you don't seem sick today
Well, have you ever lived wondering if
each day will be your last
not knowing if there's a tomorrow and
reliving and regretting your past
Have you ever fought daily just
to get out of your bed
had a foggy grey cloud hanging always
over your head
Have you ever lost 30lbs or
had your hair all fall out
wasted away in a chair
with no one about
Oh I have my good days too
when I don't let it show
and some see me those days only
so they don't really know
So all you nonheppers out there who
haven't ever felt this way
don't ask are you really sick if
I don't show it today....
J.W. Cutrer
aka SirJohn
If It Don't Show Today
I have had quite a few people
come up to me and say
why you're looking pretty good
you don't seem sick today
Well, have you ever lived wondering if
each day will be your last
not knowing if there's a tomorrow and
reliving and regretting your past
Have you ever fought daily just
to get out of your bed
had a foggy grey cloud hanging always
over your head
Have you ever lost 30lbs or
had your hair all fall out
wasted away in a chair
with no one about
Oh I have my good days too
when I don't let it show
and some see me those days only
so they don't really know
So all you nonheppers out there who
haven't ever felt this way
don't ask are you really sick if
I don't show it today....
J.W. Cutrer
aka SirJohn
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