Aa
To My Online Family
It's been almost three years since I found this wonderful community, and through it, I discovered the true kindness of strangers. Many of you have become very dear to me -- you've all taught me so much, made me laugh, made me cry, but most of all made me feel like I wasn't all alone when times felt really dark, and I can't thank you enough for that. I admire so many of you -- so much generosity and good will in sharing your knowledge, your opinions, your songs, your jokes...
But in some ways coming to this forum these days is bittersweet. There are moments when I feel I can no longer share in the trials and tribulations of hep c treatment, and to wonder about SVR or relapse, and discuss outcomes. There's a part of me that wants to give back what so many of you gave me, but my husband's outcome is one no one really wants to consider. I want so much to help people impartially, but inside I feel like screaming, "Treat, treat, treat! You don't want to wind up where my husband is!"
Oh gosh folks, as I'm writing this, I think it's the first time I've broken down since the diagnosis of his new hcc. I guess I'm feeling a sense of desperation now, with his bone scan and interventional radiology consult coming tomorrow. Sorry that I just so needed a place to break down, and I guess I sort of need to feel out if it's still good to come visit or not.~eureka
But in some ways coming to this forum these days is bittersweet. There are moments when I feel I can no longer share in the trials and tribulations of hep c treatment, and to wonder about SVR or relapse, and discuss outcomes. There's a part of me that wants to give back what so many of you gave me, but my husband's outcome is one no one really wants to consider. I want so much to help people impartially, but inside I feel like screaming, "Treat, treat, treat! You don't want to wind up where my husband is!"
Oh gosh folks, as I'm writing this, I think it's the first time I've broken down since the diagnosis of his new hcc. I guess I'm feeling a sense of desperation now, with his bone scan and interventional radiology consult coming tomorrow. Sorry that I just so needed a place to break down, and I guess I sort of need to feel out if it's still good to come visit or not.~eureka
Hi Lady!
I remember when you and I came to this forum...Full of questions and typical semi-freaked out newbies that we were! LOL Ahh, the memories...Do you recall my "Riba Rash Boogie" song? Remember Mikkimoe? Trish? IMR? Headshop? Wassup? Jeeze, there's so many more but the tx brain fog fuzzed things up a bit...Do you recall doing "first shot parties"? Everyone comparing "stupid brain fog moments"? :P I'm happy to say those days are past, and now I'm one of the ones to offer encouragement and the "get over your pity party and educate yourself" tough love moments...Hang in there chickie...Eat the elephant one bite at a time...(((((((((((((((((((((((HUGZ)))))))))))))))))))) ~MM
I remember when you and I came to this forum...Full of questions and typical semi-freaked out newbies that we were! LOL Ahh, the memories...Do you recall my "Riba Rash Boogie" song? Remember Mikkimoe? Trish? IMR? Headshop? Wassup? Jeeze, there's so many more but the tx brain fog fuzzed things up a bit...Do you recall doing "first shot parties"? Everyone comparing "stupid brain fog moments"? :P I'm happy to say those days are past, and now I'm one of the ones to offer encouragement and the "get over your pity party and educate yourself" tough love moments...Hang in there chickie...Eat the elephant one bite at a time...(((((((((((((((((((((((HUGZ)))))))))))))))))))) ~MM
Can I just send you a (((((hug))))) . My words feel very inadequate to express how I feel about what you are going through. I only know to pray at times like this and I am doing that now.
Ev
Ev
Please don't worry about scaring people. It would be so easy to quit this tx. You remind me that my discomfort with the situation is nothing compared to what my husband could be dealing with if I give up. I'm giving it my best shot for him. And I thank you for sharing. I'm sending you all the extended hope (I love that phrase) I can muster.
Carol
Carol
If all sides were like you everyone would be doing treatment all of the time.......why we'd have to pretend we relapsed just go get more meds :)
And don't worry about being worse case scenario rep - honey it might be one person who needs to read what you have to say that ends up making them decide to treat and saves their life. You cannot beat that with a stick!
And don't worry about being worse case scenario rep - honey it might be one person who needs to read what you have to say that ends up making them decide to treat and saves their life. You cannot beat that with a stick!
The forum is one of the few places I feel secure about being insecure... or naughty, as you say :). Just sometimes it's hard to reconcile that a lot of people come here scared, and that I might be scaring them more... I will just have to adjust to being the 'bad case scenario' rep on this forum!
And as for the bright spot, you have the right idea! I'm going to move forward with the presumption that it is former injury (hubby's had lots of those!) unless otherwise informed.
And when I do feel crazy, and I come here, I often feel much more normal... so, really, what's THAT saying? ;)
The truth is, if my husband were the one posting on this forum, the one silly side he'd undoubtedly be whining about would be me! :) Thanks for the good cheer. ~eureka
And as for the bright spot, you have the right idea! I'm going to move forward with the presumption that it is former injury (hubby's had lots of those!) unless otherwise informed.
And when I do feel crazy, and I come here, I often feel much more normal... so, really, what's THAT saying? ;)
The truth is, if my husband were the one posting on this forum, the one silly side he'd undoubtedly be whining about would be me! :) Thanks for the good cheer. ~eureka
Dear Dear Eurkea.
There's a part of me that wants to give back what so many of you gave me, but my husband's outcome is one no one really wants to consider."
You do not have to come here to offer any help to new members or to do anything single thing in the world except accept OUR love and support for YOU and YOUR HUSBAND. THAT is why the forum is here. You should know that by now......naughty girl you!
If anyone deserves to have a breakdown and needs some friends to vent to then certainly it's you right now. It makes me laugh when people come in and whine about silly sides (which everyone is entitled to do once in a while I guess) but then someone in your shoes feels bad about doing it. Now that my friend is not acceptable behavior and hurts OUR feelings! I know you don't want to do that! :)
I'm glad you have found a patient advocate type - these doctors might have degrees but just don't understand the human need during treatment very much do they? What a difference humanity can make!!!!!!!! As for the bright spot it could be anything and until there is something to definitely be concerned about put that aside. Please. Don't make yourself crazy. That is what we are here for ;)
xox ♥ Deb
There's a part of me that wants to give back what so many of you gave me, but my husband's outcome is one no one really wants to consider."
You do not have to come here to offer any help to new members or to do anything single thing in the world except accept OUR love and support for YOU and YOUR HUSBAND. THAT is why the forum is here. You should know that by now......naughty girl you!
If anyone deserves to have a breakdown and needs some friends to vent to then certainly it's you right now. It makes me laugh when people come in and whine about silly sides (which everyone is entitled to do once in a while I guess) but then someone in your shoes feels bad about doing it. Now that my friend is not acceptable behavior and hurts OUR feelings! I know you don't want to do that! :)
I'm glad you have found a patient advocate type - these doctors might have degrees but just don't understand the human need during treatment very much do they? What a difference humanity can make!!!!!!!! As for the bright spot it could be anything and until there is something to definitely be concerned about put that aside. Please. Don't make yourself crazy. That is what we are here for ;)
xox ♥ Deb
The new nurse assigned to coordinate care called this morning to ask some questions and to "check in." I was actually quite surprised, because she asked if my husband was OK with the radiologist he met, and if there was anything she could do... a patient-advocate type for once...more like the people on this forum than any other health provider my husband has had! Mixed blessing in the call is that the bone-scan showed a "bright spot" on one of his ribs, of questionable origin, but it was not questionable enough at the moment to interfere with the treatment plan. "Just might interfere with transplant status if it's not previous trauma." (Sigh)
Thanks for indulging my more difficult moments and helping me find the better side of things. You folks are more support for me than you'll ever know. ~eureka
Thanks for indulging my more difficult moments and helping me find the better side of things. You folks are more support for me than you'll ever know. ~eureka
Sending you and the DH my very best. I hope you always feel free to come here and express whatever you want to.
hello eureka..I am new on here less then 24 hrs...6mths diagnosed...scared to death..and bf left me..
I am so sorry that your husband and you are going through such a rough time. I've read some of your recent posts and I think that you are an amazing person to reach out and help others while you are going through this. I hope and pray that your husband responds, and that you have a long and happy life together.
You'll both be in my thoughts and prayers! You are definitely someone who has made this forum a good place for me. The difficulties you have had seem incredible and your strength is inspiring. I wish there was something I could do. Like Elaine says, you're not alone.
Hugs,
Brent & Liz
Hugs,
Brent & Liz
Your well wishes and understanding helped me so much -- I think sometimes how we get through things is drawing the from the extended hope and strength of others. Thank you so much for the outpouring of support.
There are times when I feel the well of rage, the unfairness of it all, but this place reminds me that we each have our individual burdens to bear. I have to keep believing that what my husband and I have ahead of us is there because we are capable of overcoming it, in one way, shape or form. It’s been a constant battle against hep c since his diagnosis, and watching his struggle and suffering makes me feel that somewhere through the pain SOME good has to come out of it. I appreciate so much your welcoming sympathy and encouragement in making me feel comfortable sharing my less than uplifting circumstances.
The appointments were a bit of a juggle yesterday (injection of isotope at 11am, return at 2pm for bone-scan, meeting with radiologist at 3:30), but we managed to cross the threshold to the next step. Radiologist was direct and to-the-point (just my husband’s kind of guy!) – one session, perhaps two if necessary to try to chemo-embolize 3 of the 4 lesions (one of them is rather diffuse and located deep in the caudate lobe). He estimated that this treatment is effective in about 2/3 of patients, and effectiveness of the treatment is determined a month after by imaging. However, he warned us that successful treatment no way impacted the growth of new tumors. It’ll be at least one overnight stay, with possible side effects for up to 2 weeks, but we’re hoping for the best. He expressed some conflict about his availability and the need for the procedure soon because of my husband’s rise in AFP from 345 to 545 in just 6 weeks, but assured us we’d receive a call by next Wednesday regarding procedure date. My husband felt encouraged: “he seems pretty confident.” I heaved a big sigh of relief, because my husband has not always felt positively about his health providers.
The big surprise in the midst of all this is he’s not been told to stop treatment. Shot #93 tonight.
There are times when I feel the well of rage, the unfairness of it all, but this place reminds me that we each have our individual burdens to bear. I have to keep believing that what my husband and I have ahead of us is there because we are capable of overcoming it, in one way, shape or form. It’s been a constant battle against hep c since his diagnosis, and watching his struggle and suffering makes me feel that somewhere through the pain SOME good has to come out of it. I appreciate so much your welcoming sympathy and encouragement in making me feel comfortable sharing my less than uplifting circumstances.
The appointments were a bit of a juggle yesterday (injection of isotope at 11am, return at 2pm for bone-scan, meeting with radiologist at 3:30), but we managed to cross the threshold to the next step. Radiologist was direct and to-the-point (just my husband’s kind of guy!) – one session, perhaps two if necessary to try to chemo-embolize 3 of the 4 lesions (one of them is rather diffuse and located deep in the caudate lobe). He estimated that this treatment is effective in about 2/3 of patients, and effectiveness of the treatment is determined a month after by imaging. However, he warned us that successful treatment no way impacted the growth of new tumors. It’ll be at least one overnight stay, with possible side effects for up to 2 weeks, but we’re hoping for the best. He expressed some conflict about his availability and the need for the procedure soon because of my husband’s rise in AFP from 345 to 545 in just 6 weeks, but assured us we’d receive a call by next Wednesday regarding procedure date. My husband felt encouraged: “he seems pretty confident.” I heaved a big sigh of relief, because my husband has not always felt positively about his health providers.
The big surprise in the midst of all this is he’s not been told to stop treatment. Shot #93 tonight.
It so very hard on the caregivers, I think even harder than on those of us with this nasty virus.
Like you there are times and days that I'm happy to live my life free of thoughts concerning HCV or hearing yet of another person in the same position I found myself. There are so many of us with this virus, it can be overwhelming.
Please, take time to be good to yourself.
Its good to take a break, if possible when you can.
And as my mother used to say, this too shall pass.
Hugs,
OH
Like you there are times and days that I'm happy to live my life free of thoughts concerning HCV or hearing yet of another person in the same position I found myself. There are so many of us with this virus, it can be overwhelming.
Please, take time to be good to yourself.
Its good to take a break, if possible when you can.
And as my mother used to say, this too shall pass.
Hugs,
OH
I know you don't know me very well, but I have seen you post many supportive comments to people while you are in the midst of your own very serious situation. You are obviously a very kind and strong person. As Elaine said it's okay to breakdown, feel your emotions and cry. I am very sorry that you and your husband are faced with this after all you've been through.
You have a lot of friends here,
I hope you beat the odds once again,
Dave
You have a lot of friends here,
I hope you beat the odds once again,
Dave
I wish you both the very best tomorrow.
You and your Husband will be in my heart and mind.
Mike
You and your Husband will be in my heart and mind.
Mike
Hi Eureka !
I wish to express for the best possible outcome for you
and your husband. This road is sometimes lonely and heartbreaking.
I'm still thinking positive for both of you, along with many hugs and prayers
sent your way.
I was told it's OK to cry and break down sometimes and yes, you can always
come here.
You're never alone
Hugs to you
Elaine
I wish to express for the best possible outcome for you
and your husband. This road is sometimes lonely and heartbreaking.
I'm still thinking positive for both of you, along with many hugs and prayers
sent your way.
I was told it's OK to cry and break down sometimes and yes, you can always
come here.
You're never alone
Hugs to you
Elaine
Of course you can still come here with your situation. I would think you need us more than most, and even though your situation doesn't offer hope to new people, it does give them a sobering reminder that they shouldn't take their dx too lightly. We all have a purpose here.
I'm sorry you and your husband are having to go through this. Let us know the results.
Diane
I'm sorry you and your husband are having to go through this. Let us know the results.
Diane
Sometimes I forget how hard this is/was on the people who love us, and who have gone down different roads by our side. I'm sorry that your journey has been so very long, and that there remains no clear resolution.
Best wishes to you both.
Best wishes to you both.
Best of luck to you and your hubby.
I think we can use this place for whatever reason we please.
huggles,
frank
I think we can use this place for whatever reason we please.
huggles,
frank
I'm sending you my warmest regards and really hope that tomorrow evening you'll be here to let us know how the consult turned out.
Fearing the worst is how most of us go into consultations like these but please never give up.
I wish both of you could get a good night's sleep tonight and face tomorrow, prepared, rested and realistically optimistic.
Best wishes and cyber hugs, always,
Susan
Fearing the worst is how most of us go into consultations like these but please never give up.
I wish both of you could get a good night's sleep tonight and face tomorrow, prepared, rested and realistically optimistic.
Best wishes and cyber hugs, always,
Susan
I am not one who has been here to help you. But you are one who has taken the time to help me. My heart is breaking for you in this terrifying time. Please, know all of us, old and new, are here for you and are very concerned. Scream whatever you like. We're here to listen and offer whatever comfort we can. Hugs with tears.
Carol
Carol
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
