Local support group......last night's meeting

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I joined a lovely bunch of ladies last night for a BD celebration/support group meeting/homecooked Vietnamese dinner. It was great fun and great food.

This particular meeting combined patients with all types of gyn cancers - mostly ovarian and cervical. I was delighted to meet a woman who was diagnosed stage III c (ovca) over 6 years ago and has never had a recurrence. She was in the carbo/taxol clinical trial and received 8 IV treatments of carbo/taxol - no other treatment. Her ovca had seeded throughout her peritonium/abdomen. Her doctor (who also happens to be my doctor) recently "graduated" her from CA 125 and CT scans every 6 months to once a year.

I regret that I never met the legendary member of this group who lived 18 years after her diagnosis (also stage IIIc). She died last year, but I am not sure if her death was cancer related or not. She was 80+ years old, so as Tina says, I'll buy a ticket on that ride.

There was a young woman there who just finished treatment and came commando - with her "high and tight" military-style hairdo. Very inspiring!

Another lady, whom I have met before at the local NOCC meetings, has just been diagnosed with her first recurrence and has started treatment again. She was 4 years out before it came back and let me just say, she looks like a million dollars.

I really encourage all of you to seek out a local group of ladies whose lives have been impacted by OVCA - either survivors, ladies in treatment, or family members. Don't settle for a combo group unless you absolutely cannot find one that is primarily for Ovarian Cancer. Contact the NOCC, the ACS, or ask your doctor. Maybe you could even start one! After all, someone started all the groups....why not you?

We are all desperate to hear success stories and talk one-on-one with women who have traveled this road. Remember....if it's a burden, share it and your load will be lessened; if it's a blessing, spread it around and your blessings will be multiplied.

Carlene

Comments

  • cptv8ing
    cptv8ing Member Posts: 24
    It sounds fabulous!
    It sounds fabulous! Unfortunately the nearest support group to me is an hour away! I went to one while I was in Iowa and though I was the youngest it was truly wonderful. There is nothing like a roomful of women who know exactly what you are going through! I'm glad you had a nice time you deserve it!

    Melanie
  • cptv8ing
    cptv8ing Member Posts: 24
    It sounds fabulous!
    It sounds fabulous! Unfortunately the nearest support group to me is an hour away! I went to one while I was in Iowa and though I was the youngest it was truly wonderful. There is nothing like a roomful of women who know exactly what you are going through! I'm glad you had a nice time you deserve it!

    Melanie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    cptv8ing said:

    It sounds fabulous!
    It sounds fabulous! Unfortunately the nearest support group to me is an hour away! I went to one while I was in Iowa and though I was the youngest it was truly wonderful. There is nothing like a roomful of women who know exactly what you are going through! I'm glad you had a nice time you deserve it!

    Melanie

    Melanie.....you could start
    Melanie.....you could start one! Seriously...talk to your doctor, your infusion center, the American Cancer Society, and/or the National Ovarian Cancer Coalition.

    One in 58 women is diagnosed with ovarian cancer. So even if you live in a small town of 5000 people, there are over 80 women in your immediate area who have ovca.

    Being pro-active is so much better than letting this crappy disease turn us into victims. Get mad! Fight back! And keep on fighting! It will keep you strong.

    Carlene
  • nancy591
    nancy591 Member Posts: 1,027 Member
    awesome
    Carlene, I just think you are awesome. I wish you were my Mom.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    nancy591 said:

    awesome
    Carlene, I just think you are awesome. I wish you were my Mom.

    Thanks, Nancy. That's my
    Thanks, Nancy. That's my calling in life, I think - to be everybody's mother. It probably stems from my own upbringing, and wishing that I had a different mom - or rather, that my mom was different. She was one of those moms who did everything right - paid her bills before they were due, kept the house clean, cooked great meals, etc, but she did not enjoy her kids, let alone anyone else's. She was not warm and fuzzy, and I yearned for a mom that the other kids would be jealous of.

    I tried to be the best mom ever to my kids. I hope I succeeded, somewhat. My (now ex) son-in-law once told me, "All I ever wanted was to be one of your kids." To me, that was a huge compliment.

    I know that you have that same maternal instinct that transcends all else, and that you have very young children. That has to make this time in your life truly hellish. I pray that you will be blessed with a miraculous cure and that you will see your boys grow up to be fine young men, with families of their own.

    Carlene
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  • nancy591
    nancy591 Member Posts: 1,027 Member
    rural
    I live about 2hrs outside NYC. No ovca support groups in my area. Breast cancer support...but of course!
  • froggy1
    froggy1 Member Posts: 205
    Great group!
    I am envious you are able to find such great support. The first thing I did when diagnosed was look for a support group. I really found very little help, either on the outside or through the doctor's office. I felt so alone in my journey. Many of the ladies in the chemo suite didn't seem very interested in sharing. They seemed as if they just wanted to be left alone.
    I think part of the problem is distance. Some of the patients come very far for chemo and it would be difficult to get a group together.
    That's why I am so thankful for this group, 'wish we could all get together for real, how fun would that be???
    Thanks, as always, for sharing Ginny
  • sanam
    sanam Member Posts: 106
    froggy1 said:

    Great group!
    I am envious you are able to find such great support. The first thing I did when diagnosed was look for a support group. I really found very little help, either on the outside or through the doctor's office. I felt so alone in my journey. Many of the ladies in the chemo suite didn't seem very interested in sharing. They seemed as if they just wanted to be left alone.
    I think part of the problem is distance. Some of the patients come very far for chemo and it would be difficult to get a group together.
    That's why I am so thankful for this group, 'wish we could all get together for real, how fun would that be???
    Thanks, as always, for sharing Ginny

    Dear Carlen
    You are such a

    Dear Carlen
    You are such a wonderful person!
    Last month I participated in a course called "7 habits of highly effective people".
    I guess you are fimiliar with that.For me in Iran attending in such a course was realy some thing.
    The first rule is:"Be proactive".It means you can take some of the things that you think you can not control to the area that you can control.From circle of concern to the circle of influence.
    Now you are the symbol of The first rule for me.
    THERE IS NO SUPPORT GROUP IN MY COUNTRY.
    When my mom is laying down in the clinic to recieve her chemo,She is chatting with other ladies with diffrent type of cancer,I feel she is much better.Even those ladies seem so willing to share and help each other.I promise myself to find a way.
    Hugs
  • msfanciful
    msfanciful Member Posts: 559
    Hi Carlene,
    You're

    Hi Carlene,

    You're absolutely right!

    Support groups (the right groups of course), makes all the difference in the world with how many individuals with cancers, etc. deal with their situations.

    I have dabbled in several before finding at least 2 groups I absolutely love!

    One is given through TX Oncology here in Austin, Tx and the other is with ACSs' Look Good Feel Better" program of which I've already conducted two classes! (Yippee!)

    I just love your positive outlook on things and do my absolute utmost to follow your lead! :-)

    One thing about Austin's motto it's..."Keep Austin Weird". Yes it really is!

    Maybe that's why I feel sooo comfortable going out commando! LOL!

    Stay beautiful and have a great weekend!


    Sharon