My spouse and some of my friends just don't get what treatment means

[miked]

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

[geterdone]

for being crude and self centered, no offence to anyone here.

[wyntre9]

"once treatment is over and the "old you" returns that friends and family will be back, I found that out. Thing is how many of them do you really want back. Sorry for the cynicism but wanted to let you know that you're not alone."

Just call me cynical.  And I don't (want them back).

wyntre

[miked]

Your hermit comment really rang true.  When I last treated I avoided social situations like the plague.  We're big-time hockey fans but just the idea of being in the area with the horns and music blowing at goals just about drove me nuts.

I too take comfort in my gardening which for the Prove 3 trial will be in the summer.  It's peaceful and feels productive to plant something that you know is for the future.  Right now we're pigging out on Asparagus.

Thanks everyone.  I really do feel better for talking (writing) this out today.

[cruelworld]

yalls comments confirm the positve aspects of my strategy. i have told virtually no one about my disaster, especially not my family. i didnt tell them because i knew it might play out for many years. why drag them through it? i didnt tell anyone else because of the anticipated lack of understanding. it is simply true that until youve been here, it is all meaningless. i beleive, too, that to survive this you must have a least one person to talk to who at least acts like they understand. my plan of solitary confinement may be lonlier but its easier, you dont have to worry about others disappointing you along the way.

[cigaso]

For those who can maintain their regular activity levels while on tx, God bless you. I couldn't and got fired. I did learn from both times on tx that the people you work with, even your loved ones, are accustomed to you meeting your responsibilities and obligations. Once they see you can't, attitudes will change. Once they go through their phases of shock, anger, pity and acceptance they get to the point of wanting it to be over for you. I don't mean death. They get weary for us and don't know what to do or say. The first time I was on tx I did not include my wife in any part of my tx. She is much like your wife. She holds everything in and maintains a positive attitude for her and the kids. This I am very grateful for, but the sx can be overwhelming at times. This 2nd time around I made sure she went with me to my Dr's appointments. This has helped a great deal. I have made sure she is my partner in this personal hell.

Hope this helps you and others.

[andiamo]

I think it all has been said in the earlier posts.  I can only say that my experience was often like yours and theirs (I have done this a few times).  While I was still working, I once posted the interferon warnings on the company email system.  I highlighted suicidal ideation and homicidal ideation (as a joke).  I got many funny responses about people refusing to be in the same room as me and having a rule that I could only teleconference until my treatment ended.

After a while, they actually became sympathetic and made life a little easier.  I gave my wife a lot of literature and asked her to read this board; she is much more understanding now.

Today I had a wonderful experience: spring is sailboat commissioning time and for a sailor like me, this is one of the most exciting times of the year.  This year, I am felling so sick that I didn't have a clue how I would get the boat ready for launching.  Yesterday my wife and best friend said that they would accompany me to the boat, and I should only supervise while they did all the work!

This is my 5th time on treatment and I finally have support.  Perhaps it is because as I age, I look worse while I am treating.  When I first treated, most people said I looked better than normal even though I felt worse.  Now people meet me and look worried when the see me for the first time in a while.

I am sure things will improve for you and I certainly hope the new drug works well for your son .