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EVERYBODY PLEASE READ
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
Love,
Jan
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.
Thanks
Jan
http://earth.google.com/index.html
yahoo.com: Yahoo ! ID: ***@**** password: courage. The attachment is above the salutation.
Thanks
Jan
http://earth.google.com/index.html
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)
Jan
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)
Jan
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.
Teresa
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.
Teresa
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?
Jan
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?
Jan
Jan,
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!
Teresa
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!
Teresa
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.
Jan
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.
Jan
Now I am blue ;-)
Jan if you need help putting the list together, count me in. I am so bored and have nothing to do except for thinking about this cancer so would be glad to help
Jan if you need help putting the list together, count me in. I am so bored and have nothing to do except for thinking about this cancer so would be glad to help
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.
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.
Hillary
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.
Hillary
Good Morning and Merry Christmas,
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.
Love,
Jan
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.
Love,
Jan
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.
Monserrat
Monserrat
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.
Jan
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.
Jan
This is a great idea. I just found this forum and after being a three year survivor I would love to give support to women in need of it. I live in the South Eastern wisconsin area.
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
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
PS Keep the chat going please/.
PS Keep the chat going please/.
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.
Mary
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.
Mary
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