EVERYBODY PLEASE READ

[Jan214]

I have been toying with the idea of starting a registry among us so that in the event that one of our "sisters" needs someone to be with them IRL we will have a list of people we can call in their city.  Most of us remember our little friend in CA who could have used a lot of support and at the last minute we were scambling around trying to find someone to help her.  Now there are other women who are having to face this alone or pretty much alone and that should not be the case.  We are so loving and supportive on this forum, I don't see why we should not carry that over into RL.  I have thought of several good and safe ways this could be done so now I just want to know if you all would be willing to participate.  If the response is enough I will post my ideas on how it could be done and I would like your input as well.  I am an organizer by nature and usually pretty good at getting people to come together for a good cause.  We are always looking for ways to help the cause of OVCA and being there for one of our own is a great way to start.  Thanks
Love,
Jan

[gah_70]

Count me in.  There seems to be a lot of people on here now who are in my general area, and it would be great to not only meet them, but help out in a time of need.  Great idea, Jan!

Gail

[cirella]

Good idea, Jan.  I may not be able to share the experience but I can sure hold a hand.  

[Jan214]

Thanks guys.  You don't have to share the experience, and hand holding is just what we need.  Besides cirella you share the experience through us and you have certainly listened to me whine enough that you must know exactly how it feels. :)
I could use some help on how to set this up.  I don't think emails through this site would be enough, because some aren't set up to get them and not everybody checks everyday.  We would need a telephone call system like we used to do with PTA, girl scouts etc.  All of us soccer moms know how to do that.  I think if people want to offer a phone # it should be a cell.  I think we would need someone or regional someones to act as registrar/s.  To have a list of people who they could call when a situation arose.  We would have to be able to verify the person acting in that position cause there have been some nut cases and we don't want them involved.  For instance, the place I worked until I couldn't work anymore did criminal background checks and my old boss said he would be willing to verify who I am, that I am not a criminal or a nutcase, but the only problem would be that I wouldn't want 200 people calling him.  How could we be sure of the people we ask to act in this capacity?  Do we want to make sure we know who the people who sign up for this are?  We don't want to send any whack jobs out to our friends either.  There are 10 or 12 of you that I am 100 percent certain that you are who you say you are, that you live where your profile states and that you are normal caring people.  Some of these people who don't put anything in their profile and with whom I have not corresponded, I just don't know about.  They could be anybody.  So lots of questions and will really need suggestions from all.  Thanks

[ireneo]

I think it would be a good idea to have some kind of phone tree or email tree (?) to give support to those in the midst of it all. I'm involved with a heart board and the regulars have exchanged info to stay in touch just in case something happens. Are you planning to have a group to give support to new patients in an area or just to those that are posting here? Guess I'm not catching on. Hospitals have volunteer positions too. My husband volunteered for a few years in the cardiac unit. Then he became involved with the "No One Dies Alone" program. That's where he simply sits with a dying patient because they have no friends or family able or willing to come sit with them during their last hours.

Oops, wandering again. I think you have a good idea and should pursue it.

[Jan214]

I like the "No one dies alone" program, but I was thinking about support before that happens.  There are some on here who don't have a lot of friends and family around or whose boyfriends/spouses have left them in a lurch.  They shouldn't have to go through the anxiety of the first surgeries alone.  Or anyone who has to be in the hospital for any reason and maybe has friends and family but wants someone to visit that understands their situation.  The thing is ireneo some people don't live anywhere where there is a Gilda's Club or a support group and although hospitals do have volunteer programs the patients rarely hear about them and that would just be a stranger anyway.  We are friends, we know each other and should be there if needed.  I am not looking to start local support groups.  My brain isn't working well so maybe I am not explaining things right.  It's like with our young friend in CA.  When her mom passed she was all alone and a good many of us would have hopped on a plane if we could have, but it would have been nice to have someone from this forum who lived close by go sit with her.  There is another girl who is facing surgery alone except 1 relative and her fiance has been just horrible.  She could surely use a friendly face to show up at the hospital when she has her surgery.  That kind of thing.

[freshair]

Hi Jan,
You have a wonderful idea. I had a friend that suffered this horrid disease and she lived alone. I'm all for it and anything I can do to help.
Helen

[PPhelps]

You are one of kind. Thinking of others like you do. I take my hat off to you. You are right though Victoria should have had someone with her. It's a shame the way some families behave. I guess I take it for granted sometimes my family and friends would be there in a heart beat. I'm one of the rural people too, but I'll do what I can. Paula

[crecco]

I think that would be a great idea. Especially considering the fact that I also live alone. I don't always like to burden my family (Which is rather small, my mom, one sister, and my son and his family) with my whining when I am feeling down in the dumps. Regardless of how strong we would like to think that we are, all of us have our days, and having someone to talk to that understands would make such a difference. Like PPhelps the biggest problem is that we live in mainly rural areas and I think that she is the closest woman I have yet to meet with ov ca. But if I can be of help, just let me know.  Chris

[ireneo]

Ah, yes, I get it now. It's true that hospital volunteers are strangers. But a person who's been there, done that is a good place to start. I tend to connect with others that have heart problems. It's an instant connection. One way to start is when a person is going through a tough time, see if they're willing to share that info with the people here on the board. Even if we can't hop on the plane, we can send our thoughts and hugs. The person in contact can copy and forward them. We do that at another board I visit. Some people email personal messages and if something goes wrong (like a family death or other disaster) we all send our love.

Just another thought, not to replace your idea, just a little extra connection.

As for the No One Dies Alone program, that was random. Not related to this. It's just been so meaningful to be able to help in that way.

[ChrisP2236]

Hi Jan,
I think this is a nice idea - I still work full-time but would like to help where I could.  I haven't filled out a profile because I didn't know there was one - may not have been paying full attention when I registered.  Hope you are feeling better today.  Chris

[cirella]

I'm getting a vision of Marty's 'I Am Woman song'!  LOL  You go girl.

[vrw520]

Jan, I think this is a really good idea. None of you should ever have to feel alone through all of this. Just one caring person I think can make a big difference. This is really great. Victoria

[dian07]

Jan....you can count me in........I am in northwest Iowa so I can cover this part of the woods.
Peace.
dian

[Fiveft4]

If there is anything I could do to help I would love to. My diagnosis wasn't cancer, but I can certainly relate to all the prior stuff and surgery. We each start out with the same looming question of is it or isn't it? Only when we have our surgery do we learn exactly what it is we're dealing with. If I can be there for someone I would be honored. I live in the Portland, Oregon area - same as Irene :-)  

Sharon

[vegas2cr]

Jan I am in Costa Rica so I don't know how much help I can be... love your idea though.  I am in Las Vegas at least 4 times a year for 2 or 3 weeks at a time seeing my kids...You are correct no one should ever feel alone... Ronni

[PPhelps]

I didn't know you could get a profile either, but I just put on. It's easy. Up at the very top there is a blue line. The last one is My Medhelp. Click this it will take you to where you can do your profile. I need to get a different picture of me on this computer. But it will do for now. No one laugh.

[crecco]

Just thought I would add, here in Southern IL where I live, I am not close to a Gilda's Club. (I think the closest one is in Chicago) Nor is there an ov ca support group any closer than about 2 1/2 hours away. (In Decatur, which is held once a month) I know how hard it has been for me and if there is anything that I can do to help make it a little easier for someone else, then I am all for it. Chris

[LoriLee1962]

I've seen your posting on mine before. and I live in Brazil Indiana, near Terre Haute Indiana, which is about and hour and half north of Evansville. You're probably the closest to where I live.
Lori.

[lvfrogs]

I think you have a wonderful idea. I have a very good support group of friends and some family, but I know that sometimes you need someone who has gone through it and can truly understand. I have not been diagnosed with OVCA.  I have been on this forum because of all my symptoms and they are still trying to figure out what is wrong, so I do come and read the posts.  If I can help, I will. I live in Central Florida.
Colleen

[crecco]

Terre Haute is about a hour and a half drive for me. As a matter of fact, I am going to Terre Haute this Friday! Yes, I do think you may be the closest one yet. There are several others within about 4 hours. PPhelps, in So IL, cirella and hatgal in No IL, TGinKY in W KY, Jan in Nashville TN. Maybe sometime soon we can all meet somewhere in the middle. That would be so nice! Chris

[Twilight_Princess]

What a wonderful idea! I don't have any experiences to share because I've never been there, but I too, like some others here, came to this forum because of my symptoms. I believe none of you women should be alone. I will say this, count me in! If I can help, I will. I live in the Central New York area.

Kathy

[linlynn]

Great idea.I did not tell my friends around about my cyst because I do not want to be the lunch topic. I  I suffered a lot and learned a lot from my ovarain cyst. I would like to share my experience with you all. I lives in Columbia, MO.

[rmarie]

It is a good idea, you can count me in.  My area does have an American Cancer society with a program and an Ovarian Cancer support group.  Marie

[Brownie3321]

Jan - what a great idea. You can count me in. I live in Boulder, CO. Deandra