hi, newly diagnosed wanting to talk

jonnie71
jonnie71 Member Posts: 26
in Ovarian Cancer #1
Hi, was just diangosed on monday 4-25-11, couldn't sleep just wanted to talk... anyone here

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    #2
    Hi Jonnie,
    you still there? I will friend you and you can give me your phone number.
    k
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #3
    Jonnie....I'm sorry I missed
    Jonnie....I'm sorry I missed you. There is a CSN chat room, but I have yet to find anyone there from the ovarian board. Still....in some ways, cancer is cancer.

    I was diagnosed in Sept of 2009. I know just how you feel. I was totally blindsided. No risk factors, no family history. No reason I should have ovarian cancer (or any cancer). I hope you will share your story with us when you have settled in. This is a great group - supportive, very well informed, and super, super nice.

    Carlene
  • srwruns
    srwruns Member Posts: 343
    #4
    Hi Jonni, this isn't like a
    Hi Jonni, this isn't like a chat room so there isn't instant messaging...but we are all here for you. I just finished chemo about a month ago. The folks here really helped me through it all. Especially coming up on the first chemo I was terrified. Stay in touch.

    edit: just read Carlene's post in total. I didn't know there was a CSN chat room!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
    srwruns said:

    Hi Jonni, this isn't like a
    Hi Jonni, this isn't like a chat room so there isn't instant messaging...but we are all here for you. I just finished chemo about a month ago. The folks here really helped me through it all. Especially coming up on the first chemo I was terrified. Stay in touch.

    edit: just read Carlene's post in total. I didn't know there was a CSN chat room!

    Yes....there is a chat room!
    Yes....there is a chat room! Maybe that explains why I've never run into any OC girls in there.

    On the left of the screen there are navigation boxes. The top one is redish/pinkish and it has:

    Discussion Boards
    Announcements
    CSN Feedback
    Member Resource library
    Expressions Gallery
    Member Directory
    CHAT
    CSN Email
    My CSN Space
    Invite a friend


    Just click on the word "chat" and it will take you to the chat room.


    Carlene
  • leesag
    leesag Member Posts: 621 Member
    #6
    Hi Jonnie,
    I'm so sorry that
    Hi Jonnie,

    I'm so sorry that you've joined our club, but you'll find TONS of support here! I love my Teal Sisters, they are really the basis for my ongoing sanity!

    On another front, if you are having difficulty sleeping, you may want to talk to your doctor about it. I was such a wreck after my diagnosis, that I didn't sleep for three days. When I finally called my doctor (on a Sunday), she immediately called in a prescription for me. I'm one of the "better living through chemistry" proponents. If that's not your choice, then there are many other ladies here who have a multitude of other ways to deal with stress and sleeplessness!

    Hugs Honey, you are SO not alone in this!

    Leesa
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #7
    leesag said:

    Hi Jonnie,
    I'm so sorry that
    Hi Jonnie,

    I'm so sorry that you've joined our club, but you'll find TONS of support here! I love my Teal Sisters, they are really the basis for my ongoing sanity!

    On another front, if you are having difficulty sleeping, you may want to talk to your doctor about it. I was such a wreck after my diagnosis, that I didn't sleep for three days. When I finally called my doctor (on a Sunday), she immediately called in a prescription for me. I'm one of the "better living through chemistry" proponents. If that's not your choice, then there are many other ladies here who have a multitude of other ways to deal with stress and sleeplessness!

    Hugs Honey, you are SO not alone in this!

    Leesa

    Hello
    Nice to meet you. I am sorry you are going through this. What stage are you. Did you have surgery yet. I know it is a shock to find out you have cancer, but there are many sisters here to help you along the way. Please come back and keep us posted....val
  • kikz
    kikz Member Posts: 1,345 Member
    #8
    poopergirl14052 said:

    Hello
    Nice to meet you. I am sorry you are going through this. What stage are you. Did you have surgery yet. I know it is a shock to find out you have cancer, but there are many sisters here to help you along the way. Please come back and keep us posted....val

    Welcome to the club
    nobody wants to join. I find myself writing that here alot. But having said that I don't think I have ever been part of a more supportive, knowledgeable, sincere and loving group of women. You can get through this. It is probably one of the hardest things you will ever do but you will do it. One day at a time, one minute at a time. I live by the bottom line. When I can't figure out what to do, I use the bottom line. This disease took me right to the bottom line. I want to live. I want to live as long as I can. So whatever chemo, surgery or other treatments can make that happen; bring it on!

    Take time to let it all sink in. Ask for help from family and friends. Get the best medical help you can get. And fight!

    Karen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    Hissy_Fitz said:

    Jonnie....I'm sorry I missed
    Jonnie....I'm sorry I missed you. There is a CSN chat room, but I have yet to find anyone there from the ovarian board. Still....in some ways, cancer is cancer.

    I was diagnosed in Sept of 2009. I know just how you feel. I was totally blindsided. No risk factors, no family history. No reason I should have ovarian cancer (or any cancer). I hope you will share your story with us when you have settled in. This is a great group - supportive, very well informed, and super, super nice.

    Carlene

    chat room
    I have clicked on there many times, and never see anyone in there, but it might be my time difference, too.
    k

    PS this was supposed to land below Carlene's explanation on how to use CHAT on ACS. There is a way also in the chat room to choose to go to a separate room, and chat with your friends, but it might be tricky finding enough ovarian gals on at the same time to do this. Bonnie used to use chat all the time, and was friends with many different survivors every morning with her coffee. I smile when I think of that.
  • Christine B.
    Christine B. Member Posts: 137
    #10
    Hello Jonnie,
    My name is Chris and I was diagnosed Stage IV in September. It is a scary road to be on, but you have found good support in this group. Reach out to friends, family,and if you can and are up to it support groups your area. I found a wonderful group near me just for women with ovarian and uterine cancers. I also began seeing a therapist a few months ago, just talking with him helps me straighten out some of my anxious thinking. These and prayer have kept me going. Just know that you can come here anytime for support and for answers to your questions from those who have been along this same path.
    Best wishes,Chris

    PS: Carlene, I was wondering about the chat room too, thanks!
  • Mwee
    Mwee Member Posts: 1,338
    #11
    Welcome
    Sorry to meet you this way, but you are so welcome here. I have found such comfort here. I'm another one who didn't even realize that there WAS a chatroom.... I'll have try it out.
    (((HUGS))) Maria
  • mopar
    mopar Member Posts: 1,972 Member
    #12
    HI, JONNIE
    So sorry you have to be here for this reason. I remember many sleepless nights, and I would go into the Chat room. I did come across one or two OVCA survivors, and it was good to talk, especially in the middle of the night when you tend to feel so alone. Beyond that, this is truly an amazing discussion board! Please give us some details about your situation, and maybe we can share some thoughts and ideas to help you through this.

    Till then,
    Hugs and Prayers,
    Monika
  • pstur1
    pstur1 Member Posts: 37
    #13
    Thanks for the chat room boost!!!
    Hey all, I don't post much but I have low grade ovarian and I frequent the chat room. It sure is great to see other ovarian peeps in the room! Please continue to join us. Who knows, maybe we can start a regularly scheduled ovarian chat or something...that would be great! Best wishes and fingers crossed for all my sisters dealing with ovarian cancer!!!
  • cfont11
    cfont11 Member Posts: 115
    #14
    newly diagnosed
    Hi Jonnie,

    Sorry we all have to meet this way. I was diagnosed last June during emergency surgery for a blocked colon, caused by the tumor. I am stage 3C. Had 6 treatments of carbo/taxol. Could not have surgery in June because of my condition but had hysterectomy/debulking in Jan. and then 2 more chemo treatments, last one was yesterday. It is hard to do anything until the shock wears off, which takes awhile but the best advice I can give you is to:

    Get the best gynecological/oncologist you can find. Not just a regular gyno but one that specializes in gynecological cancers.
    Find out everything you can about your disease but make sure it is CURRENT info.
    Have a good support system - friends and family and let them help.
    Chemo can be managed well with meds, other than neuropathy in feet, I had few side effects.
    Don't get hung up on statistics like survival rates and such. Most info is outdated. Talk to your doctor to get the real take on the numbers.
    Stay on this discussion board and/or find a support group that fits you. I found that most on-line groups were very negative.

    I just went in the ovarian chat room the other night but found it a little difficult with so many people writing on different topics at one time. I was asking about some specific issues and all I got was "so, we are all in the same boat." It was not helpful like I found the discussion board to be.

    Good luck and keep us posted on your progress. you will get through this. My prayers go out to you and your family.

    Chris
  • jonnie71
    jonnie71 Member Posts: 26
    #15
    cfont11 said:

    newly diagnosed
    Hi Jonnie,

    Sorry we all have to meet this way. I was diagnosed last June during emergency surgery for a blocked colon, caused by the tumor. I am stage 3C. Had 6 treatments of carbo/taxol. Could not have surgery in June because of my condition but had hysterectomy/debulking in Jan. and then 2 more chemo treatments, last one was yesterday. It is hard to do anything until the shock wears off, which takes awhile but the best advice I can give you is to:

    Get the best gynecological/oncologist you can find. Not just a regular gyno but one that specializes in gynecological cancers.
    Find out everything you can about your disease but make sure it is CURRENT info.
    Have a good support system - friends and family and let them help.
    Chemo can be managed well with meds, other than neuropathy in feet, I had few side effects.
    Don't get hung up on statistics like survival rates and such. Most info is outdated. Talk to your doctor to get the real take on the numbers.
    Stay on this discussion board and/or find a support group that fits you. I found that most on-line groups were very negative.

    I just went in the ovarian chat room the other night but found it a little difficult with so many people writing on different topics at one time. I was asking about some specific issues and all I got was "so, we are all in the same boat." It was not helpful like I found the discussion board to be.

    Good luck and keep us posted on your progress. you will get through this. My prayers go out to you and your family.

    Chris

    Thank you,
    your advice is
    Thank you,
    your advice is most helpful....

    congrats to you for finishing up chemo....

    WHOOOO HOOOOOO

    in the chat room there is private chat, one on one. i got some help there today from sitch57, shes like us. not sure how to initiate the private chat though.

    thanks for your help and if you ever need a shoulder, i am here

    Jonnie
  • JoWin615
    JoWin615 Member Posts: 150 Member
    #16
    jonnie71 said:

    Thank you,
    your advice is
    Thank you,
    your advice is most helpful....

    congrats to you for finishing up chemo....

    WHOOOO HOOOOOO

    in the chat room there is private chat, one on one. i got some help there today from sitch57, shes like us. not sure how to initiate the private chat though.

    thanks for your help and if you ever need a shoulder, i am here

    Jonnie

    Good advice
    Hi, Jonnie

    Chris has given you some really good advice - especially the part about not reading too much depressing stuff. I, too, am stage 3C and am in the middle of my carbo/taxol treatments. I really enjoy coming to this discussion board to read what others have experienced, but sometimes I come away feeling a little down. I'm trying to find a way to combat this, as it is, after all, a place where we ALL can be completely honest - even those of us who are not doing so well! I am learning though, and I look forward to following your progress.

    Jo
  • carolenk
    carolenk Member Posts: 907 Member
    #17
    JoWin615 said:

    Good advice
    Hi, Jonnie

    Chris has given you some really good advice - especially the part about not reading too much depressing stuff. I, too, am stage 3C and am in the middle of my carbo/taxol treatments. I really enjoy coming to this discussion board to read what others have experienced, but sometimes I come away feeling a little down. I'm trying to find a way to combat this, as it is, after all, a place where we ALL can be completely honest - even those of us who are not doing so well! I am learning though, and I look forward to following your progress.

    Jo

    Welcome Newbies!
    Dear Jonnie/Chris/Jo

    Just noticed y'all are new to our discussion board.

    Here you will find lots of information and support. I understand how it can be hard to read that some people are suffering, angry, feeling helpless & scared, etc.; however, there is joy, triumph & empowerment, too.

    Having a support network increases the odds of survival so I believe this discussion board is keeping a lot of people alive--outliving their prognosis and daring to be cured despite the statistics.

    Let us support you--we ARE all in this together.

    Take care & be well.

    Carolen
  • jonnie71
    jonnie71 Member Posts: 26
    #18
    JoWin615 said:

    Good advice
    Hi, Jonnie

    Chris has given you some really good advice - especially the part about not reading too much depressing stuff. I, too, am stage 3C and am in the middle of my carbo/taxol treatments. I really enjoy coming to this discussion board to read what others have experienced, but sometimes I come away feeling a little down. I'm trying to find a way to combat this, as it is, after all, a place where we ALL can be completely honest - even those of us who are not doing so well! I am learning though, and I look forward to following your progress.

    Jo

    thank you
    Thank you jo, i am always a little down it seems. i think it is the waiting part... but the last 4 days or so have been better. love that your here and i will keep posting my progress.
  • jonnie71
    jonnie71 Member Posts: 26
    #19
    carolenk said:

    Welcome Newbies!
    Dear Jonnie/Chris/Jo

    Just noticed y'all are new to our discussion board.

    Here you will find lots of information and support. I understand how it can be hard to read that some people are suffering, angry, feeling helpless & scared, etc.; however, there is joy, triumph & empowerment, too.

    Having a support network increases the odds of survival so I believe this discussion board is keeping a lot of people alive--outliving their prognosis and daring to be cured despite the statistics.

    Let us support you--we ARE all in this together.

    Take care & be well.

    Carolen

    thanks
    thank you carolen. you are right, we are all in this together. there is strength in that.
    jonnie

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