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
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
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.
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.
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
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
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.
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
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 :-)
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
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.
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
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.
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
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.
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.
I am grateful, but not surprised at all of the responses. You are all loving and caring people.
As for those of you who don't have OVCA, but still want to help, I think it is wonderful. We have to have a few well people we can count on with the rest of us being on chemo. :)
For those of you in rural areas, you could make phone calls instead of visits.
If someone is in the hospital, I think it would be a good idea if one person from here called her and let her know we were all thinking about her. We could post our well wishes and they could read them to her. That is how the rest of you not from the states can help. Write a post. If there is someone in that persons city and they want a visit, great. I have been keeping a list of people's surgeries so I could send a little note, but what if when someone tells us they are having surgery we ask them if they would like a call or a visit and we pick the person they know best or the best located person and have a visit or a phone call. The personal info of phone # or hospital could be transmitted in an email. We would have to make sure that people only accept hospital visitors if they are pretty certain who the person really is.
One of our members has already started taking care of one of our own. Someone is babysitting for our friend in surgery today whose fiance was a jerk. Let's keep her in our prayers and or good thoughts.
Please feel free to bounce back ideas on this. I would like to know how you all think this could work or what it could be. I would like ideas on how to recruit more people also.
Thanks again. You all are angels
Hi, I just posted as "17 year survivor.....". I want desperatley to help, but I am a serious technophobe, I don't even know what an IRL is OR how to read any replies I might have to the thread I started! How can I go about contacting you after work? I have no idea where you are. I am in New Orleans, central time zone. What a crappy situation, you have all these people wanting to help, but we have to be SO careful on the internet. And, if you're one of the technically impaired, like myself, well....that's a whole other stumbling block.
Thank you all again for you great response to this idea. For those of you whose names are in black, the first thing you can do is to put something in your profile so your name will be blue. With a blue name people on this site can send you private emails without you having to reveal your real email addresses. You don't have to put anything real personal. :)
For the technophobes or newbies to the site all you have to do is click on MyMedHelp on the upper right hand side of any page and than click on edit profile, also in upper right on that page. Even if you put your city and state that would help. That way when I run my cursor over the names your city and state will show and I don't have to keep a big list or come back to this post.
NOLABEAN: Many of us have corresponded and are pretty sure of the identity and safety of each other. However, you are right and we do have to be careful. That is why if someone wants a call or a visit, it will not be conducted through the posts. That will have to be set up through private emails and the two involved can decide if it is safe for them or not. Do you have a computer at home or just at work? The more you come on and tell your story and offer support the better we will get to know you and some of the other new people. I think it is wonderful you want to help. Thanks
I did put something in my profile today and I am blue now. I didn't "get" the mood section though. I also couldn't figure out how to find other people's profiles and I'm fairly computer literate. I don't remember entering my email so I'll check - Happy Holidays to you and everyone else - I am off to DC for a week so will probably miss posting as I'm so bad at remembering registration names and passwords but I've copied and printed them so maybe I can check in. I'm glad to help you any way I can, Jan. We don't live so far away that I can't visit you if you want to set this up, or vice versa (Nashville area, right?) and put this together. I'm very good with setting up databases (on existing systems) and mail merges, etc. Though not familiar with email merges, I have a friend at work who is our IT person and I think she would help me. Hugs and will be back in touch when I get back.
Rootietootie you could join us - you're not that far away either! Where in Atlanta are you?
OK, I turned my name blue:). Two questions, how do I post a reply over on the thread I started AND how do I exchange messages with others here? I clicked on your name and saw your photo, aren't you a cutie! Then I clicked on Send Message, I got my own profile. Now STOP laughing, I told you I'm a technophobe. Yes I have a computer at home. I really should not be on the forum at work, but it was a slow day, I was just poking around and voila! this forum popped up, I guess it was meant to be. Thank you for your technical help, I truly appreciate it.
I sent you an email. Go to the top of any page after you have signed in and above the orange search box you will see inbox/logout. Inbox will show how many unread emails you have. Just click on that and it will take you to your email. Make sure you click on the title of the email not the person's name to the left as that will just show you their profile. Hope this helps.
That would be great as it makes it so much easier for people to get to know you a little. Just put whatever you want in the profile, maybe just tell us a little about your situation. I don't think we have corresponded so I don't know your story and if you posted something my mind is shot and I don't remember it.
Thanks for the kind response. I surely will follow through on making sure I update (or at least start) my profile...as I feel I have gotten to know you and so many other posters although I have not posted as frequently over the past 6 -10 months. I sort of "dip" in and out depending on what is going on in my life. I recently (well, it seems recent, but was actually in July) got some answers to why I was having horrible pain since December of last year. After seeing a series of doctors a Neurologist found a slipped disk...(after having seen an Orthopedic doctor twice last winter!!!). I have just started to recapture some of my old self but it has been a long road.
I had a total Hysterectomy in Sept of 2000 after a malignant cyst was taken off my ovary during a tubal a few weeks prior. It was caught so early that no other cancer was found so therefore no staging, thus do final dx...no chemo. Still baffled....Why? and don't we need to pay more attention to stubborn cysts in Perimenpausal women (I have many friends who are nurses who spoke to me about how my Dx. shook up their clinic).
Hey all ... Sorry I havent been on here (had some more medical stuff going on, but nothing to complain about) ....
JAN ... this is a wonderful idea ... BTW .. I worked in retail for several years which means - I can put stuff together & even though I am all the way over here ... I would absolutely LOVE to help in any way that I can ... Just let me know where your (or anyone elses) needs are & I will pick it up ... This forum has turned out to be much more than what I expected when I first started reading the posts and posting myself ... This is a life line for all of the people effected directly or indirectly by this horrible disease ..
Two ladies in my school district who had been diagnosed with OVCA shortly before me were wonderful in giving me information and providing me with support. I'd love to be able to help others in the same way. I'm in the Austin, TX area.
Paula, My Adhesion (and much younger :)) Soul Sister... I know...that sounds corny...but whenever I see a comment on pain from scar tissue/adhesion...I always think, "ah, I know Paula will cover this if I can't..." Or...WE both cover it! And, WHY NOT, right?
Thanks for the note. I appreciated it.
I am excited now that I am blue...and, very proud of myself that I figured it all out...I wrote a very long story, but then, I felt there was a lot to cover!
Speaking of blue....I have been a bit blue recently...just some family stuff husband (of 27 years!) and I are trying to figure out....but, we're getting there. Part of the problem is that life gets so busy and hectic...as if this is news to everyone, right? Also daughter home after graduating from college made it necessary to make some adjustments around here. But, I think we've figured everything out, and now we barely see her since she is so busy...but, it's a good busy, you know.
Loving the job though...and the furry pets keep me laughing.
Take care...Didn't mean to change the direction of this thread, but wanted to acknowledge your kind note to me. I promise to come out of hibernation.
From not so sunny AZ, this is is great idea, will look it up soon as I get home, I am here, but with 5 little granddaughters and all the plays, musicals and so forth and keeping very busy, love to you all, and Merry Christmas Marty
The response here has been totally AWESOME!!!. Especially since I am seeing so many women so much closer to me than I had realized. This is so nice and not just for the ones having surgery ect, even for just having someone to talk to on the "down days". Even better, I am seeing so many of us within 2 to 3 hours apart that I can forsee a meeting of a bunch of us in the near future. I so look forward to something like that as I am sure so many of you are. I don't remember if I ever stated my town in So IL but it is a little town by the name of Olney. Also known as the home of the White Squirrels, due to a large population of white squirrels here. (Actually, they are not all 4 legged creatures either!) It is nice to see so many caring and concerned women out there, it warms my heart. Best wishes to you all. Love Chris
You all are just amazing!!! I will be at my inlaws from Mon-Wed or Thurs. After that I will be putting together a list of where you all are and will be emailing a master list and a local list to each one of you. The list will only contain city and state and that way if something arises you can call or visit with the people in your area. I would also like to start a "greeting card" post for those going into surgery. We could all post our well wishes and than one person could call or visit and read them the "card" from all of us. I know if I were in the hospital and away from you all it would make me feel better to hear from you guys.
FRESHAIR-DANIMATT-GAIL47 If you all would put just ONE thing in your profiles, I and others would be able to email you through this site safely so you don't have to give out any real info just put your city and state or your age or something so that your name turns blue. Otherwise the only way to communicate with you all is through the posts and it would be very easy to miss that. If I don't see a reply from you 3 or I don't see your names lit up I will write a separate post to make sure you saw this. Does that make sense? I am so confused this morning and have to much to do. See ya bye.
As a single mom in California facing the unknown and not knowing how to deal with a possible OVCA on my own, I would be more than willing to lend a helping hand to anyone in California needing support. Please count me in. My sister in law died of OVCA 6 months after being diagnosed and I'm still deeply affected by this. Let us know what you have in mind. May you all have a blessed weekend.
Well, we are going to try and drive to the folks this morning as I was to sick to drive yesterday. Just wanted to let you all know I think you are wonderful for jumping on this so quickly. For those of you still in the black...monserrat7, JenY, AliceZan would you please put something in your profile so that you can receive emails. Even if you just go in and check the female box, which we already know about you ( HA HA ) than you will be able to receive private, safe emails through this site. When I get back in a few days I am going to get the list done and if we can't communicate with you privately then it will be a problem getting you info. We can't put info like what hospital someone is in or cell phone #'s on these common posts as you all know some of the problems we have had.
I hope you all have a blessed day.
I just wanted to wish everyone here a very merry christmas and holiday, you have all been such a help to me and each other. This forum has kept me sane since I am still waiting on a final diagnosis. I will be thinking about you all today and hope that you are all doing well and trying your best to have a great day. I know I am for my kids, I'm still having a hard time but they wont see it, first year without their dad and they don't know I may be sick...but I will keep the sad and negative thoughts out of my mind today...we should all try to do that for our families and friends. If anyone here needs anything, please let me know...Jan, if you need any help with any of the lists, just let me know..I am a techie, work in IT..
Hope those of you up north are keeping warm today, we had a very warm Christmas this year, it's about 80 degrees today.
Have a wonderful day everyone.
Hi Jan. I updated my profile and hope that enables you and others to e-mail me. This is my first time joining a forum and am not entirely sure how to access information, but I hope that what I posted on my profile helps. Thanks.
Again I am just overwhelmed. THIS is what this forum is. I would have gone crazy without the supportive, loving, strong, courageous, exceptionally decent women on here.
Thank you all so much for putting profiles and making it easier for me to contact you.
I am going to work on the list tomorrow. I was thinking that we could divide the country/world into areas and each area would be responsible for keeping up with each other and arranging visits, phone calls, or other help as agreed to. It is impossible for any one of us to keep up with everybody as there are just so many. So, for those of you who are bored out of their minds I would like to have a few regional/area leaders who could be responsible for keeping up with the folks in your area. Your job would be to keep a list of those in your area who want a phone call and or a visit and try to set the recipient up with someone they know on here or seem comfortable with. Or to just send out the call to all of those in your area. Most people don't like asking for help, or don't want to admit that they are afraid so we have to ask them and than try to make it happen.
But to keep us all connected, I would also like the area leader to post a Greeting Card to the person going in the hospital or whatever and after we all post our well wishes, one person will call or visit and read them their card. It only makes sense to do things in reasonable areas, but everyone can "sign" the card.
To those bored people and IT guys :) and all those who offered help, I will be sending you an email after I see how the areas divide up.
Y'all have a good evening/day depending on where you are.
Count me in too! I would love to be involved in helping anyone. In fact, I have a strong NEED to help others right now.
As an example: I recently had a dear friend who is a gourmet cook, send over oodles of food. She sent so much for my husband and me we will never be able to eat all portions of each dish. She froze it, so it could easily be given to another family in need. All I would have to do, is divide it and take it to the person (s) in need. Believe it or not, I have no one that I know of in my area who is in need of meals due to the inability to cook. The preparation of meals has been a major problem for me since my diagnosis and surgery.
I have been very puny since beginning chemo treatments. I barely get my strength back and it's time for another one. But, I am half way through now and will be willing and able to help anyone I can in the near future. I think some of you gals are Wonder Woman or close to it to be able to go to work while having these treatments!!! I admire anyone who can function physically during these things. I want to help anyone I can and I want to get started ASAP.
Let me know what you need from me. I'd be happy to provide the information needed for you to get a list started. It seems there are quite a few of us here who are from Tennessee. Surely, there are needs you gals might have that I can provide assistance.
Oh! and thank you Jan for continuing to ask folks to provide some information on their profiles. There is no way to even remember who a person is posting if there is no information provided to jog our memories of who that person might be. I'm going to update my information right now too!
I am so glad to see that you are feeling better. You were out of touch for awhile and it is good to have you back.
We have a benevolence center at our church that provides meals for individuals and families and if you want to give the extras to that you are only 10 minutes away from me. I'll come pick it up and take it to the church. It is a Church of Christ if that is alright. Hey, some people are picky, but you know Tn, if it isn't CofC it is Baptist. :) :) Okay one or two Methodists
I really am glad that you are feeling more like your old self. I know how tough your life is right now. Yes, it will get better. How's your husband?
My husband is still in remission. However, his IGG counts. (comparable to CA125), have been slowly rising. I keep asking God to help me get my strength back so that if his health changes, I will be able to take care of him. He is taking care of me right now.
LOL of course a Church of Christ is fine with me. My husband is from here, but I am orignally from Georgia. I had never heard of C of C until I moved here. I love all the jokes about this church vs. that church that I hear in Tennessee. I also attend church, so I could take the food there. There is no need for you to have to come do that for me. Thank you anyway. I just felt that this type food would be better used if it is taken directly to a family in need. It's enough for four main dishes for two to four people. Do you need any food? I'm not kidding. I could bring it to you, or my daughter could. It's not run-of-the-meal Southern food. It's dishes like manicotti, quiche, etc. This friend of mine who prepared it used to own a catering biz. I believe I told you in an email, that food prep is a major problem for me and I bet it is for others in the same situation.
I'm about to go through the few days a month that I feel ok. Do any of you find that as the treatments progress, the recovery time is longer? It's been this way for me. I'm fine the day of and the day following the treatment. Then it hits and I am bedridden for about four days. Then another four days or so is spent trying to get my strength back up. My legs feel like rubber for about eight days or so. I will have to end this topic with: It's WORTH IT though. I want to live as long as I can. Therefore, I know I have to endure these treatments and make the best of it.
I am so glad he is in remission. Going to the hospital for treatments together does not constitute a date:) I am sure he will get his #'s down and I am equally sure that with your grit you are taking care of him as best you can.
There are a lot of cracks about churches here but EVERYBODY goes. Or at least they say they do!!
Okay, so now we're talking. I thought it was your standard meat and 3 church lady food. Which is always good food, but you can't beat gourmet either. Food prep is a problem for me because of this bad chemo brain stuff and I almost set the house on fire twice in 18 hours. The smoke was so thick even firemen wouldn't have come in without masks. I am just dangerous. Also with the low platelets I have gotten kind of afraid to cook with knives and such. Sometimes i can eat but can't stand the smell of the food cooking so I do understand your cooking issues. Man it really sucks cause I LOVE to cook.
Yes, we all pretty much feel that way with chemo. Some more than others and with some the effects depend on the type of chemo. It IS harder as it accumulates in your system. My first go round I was in the hospital after my 3rd treatment for dehydration and and after 5th. I still have stuff in me my from my first go round with Carbo/Taxol and now the Gemzar. My chemo nurse even said that she can tell a first time chemo patient all of the possible side effects of the C/T drugs, but after that she doesn't know. There haven't been enough studies done on the side effects of second and third line drugs when there has been a short remission.
You are darn tooting it is worth it. We will not only endure we will THRIVE!!!!!!!
Please read my lastest post. It is really from my husband and this man that has a really hard time communicating had me in tears. It is a must read.
Have a good day (by time you get this)
I have done a Google Earth map of everyone on this post who has so kindly offered to help. However, i am having a lot of trouble trying to figure out how to get that info to you all. I set up an email account at yahoo and attached it to an email in there. Some people have been able to see it some have not. You do have to download the google earth program to see the files. It is free and here is the link. http://earth.google.com/index.html It is in the inbox. Not everyone can get on at the same time so I don't know how to get it to everybody in a better way. When I am feeling better I will work on that. If you all could look at it and let me know what kind of problems you are having that would help.
yahoo.com: Yahoo ! ID: ***@**** password: courage. The attachment is above the salutation.
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