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282804 tn?1236833591

OUR NEIGHBORHOOD

If you are anything like me you will have sensed a general air of gloominess & despondency over our neighborhood lately and I don't like it.  There have been so many sad things happen in recent months. There are many of us who are in treatments or phases of treatments that are making us really sick. On top of cancer so many are facing loneliness, financial stresses, fears for themselves and their families.  I am sure all of us in the winter season are feeling the mid winter blahs.  It just all feels wrong.  I know some of you who actually have stopped posting so much because the forum format changed.  Please get used to it, we need everyone's participation.

Speaking of which, I for one would like to settle the issue of people being on here that don't have cancer.  My stance on this is that anyone touched by ovarian cancer and especially those worrying about whether they have it or not belongs here.  I know I want to do everything I can to make sure someone doesn't get it or finds it early if they have it and Lord only knows where this forum would be if it were not for those that love us looking for answers.  Most of our best researchers are those that don't have it.  Besides we need a few well people to make sure this place keeps going when the rest of us are sick.  LOL

I have always considered this more than a forum, I think of it as a neighborhood.  Just like anyplace else, I know some of my neighbors better than others, some have become best friends, some I know only by sight and with some I know the whole family.  However, this is a neighborhood that is constantly touched by grief.  Think about this being your neighborhood.  What would it feel like if several of your neighbors had died, several had been diagnosed with cancer and were on chemo, some lost children, some were going through divorce, several more had questionable health problems requiring surgeries?  What if a mother you knew and her teenage daughter died within months of each other and most of your neighbors were in the hospital more than out?  What if everyday some tragedy struck your neighbor?  That would be a neighborhood that would, over time, become toxic and I think that is what I have been feeling lately.

I know we muddle along as best we can, and we are very supportive of each other, but I think we
can do more to find ways to lighten this aura of sadness.  No neighborhood can withstand the onsIaught of changes that have and do occur here without going batty, if positve steps are not taken to alleviate that stress. The sadness I hear in the posts and in your emails (don't any of you dare stop writing, I do the same to you)  has prompted me to write this in hopes that we can build a more permanent infrastructure to alleviate the stress and sadness.

I have a few suggestions but I would love to hear what ideas you all can come up with if you would care to do this.  

I know that before I started really posting (yes, I was a voyerur) there were some people who would host parties to get away from all of this. I don't possess the imagination to host a cyber party, but I bet there are quite a few of you that would be good at that.  

I think we could use Chatzy (maybe another room from SpaceCadet, Marty) to have "coffee" groups in the morning or, afternoon get togethers or whatever time of the day or times a day that we could schedule to get together.  That way we get to know more of our neighbors and if we get this set up I would strongly encourage any new people to join in, that's kinda the purpose of it :-)  

To that end I am going to start by making sure that everyone on my friends list knows each other and if they don't I will "introduce" them.  I would encourage you all to do the same.  If it were a real neighborhood you would not hesitate for a second so you shouldn't feel silly doing it here.  I have "introduced" several people to my husband and he has "chatted" with them.  It has been kind of fun.  So you don't have to write emails to each and everyone you could start a post of "Moonlight's Friends" and all of your friends could me on that post.

I would like to schedule times to work on Marty's suggestion of getting a newspaper article together.  

I would like to see a daily "good news post".  It can be good news about yourself, medical or otherwise, your daughter getting the lead in the 5th grade play, your husband getting an award at work (mine is tonight, that's what made me think of it), finally getting that basement finished etc.  I don't care if it is only "Hey, I didn't throw up today!!"  What is that song about accentuating the positive?  Man, if you all really knew me you would know what an oxymoron it is that I have always been a cheerleader.  

I would like to see us have a neighborhood welcome wagon.  People could voluntarily rotate and when new people come on but hesitate to really join in that person could reach out to them and maybe introduce them to a few people.  I do notice people hanging back and I know when I first came on here someone reached out to me and it made it so much easier having one of the "old timers" pulled me into the circle.  

I would like to see a committee of people that would keep track of those that are going in for surgery.  Sometimes someone thinks to do a post but I would like to do it for everyone.

We could have a book club or clubs depending on what kinds of books everyone loves or hates to read.  Hey, Oprah has a book club with millions of strangers.  We could also have a garden club for those of us that like gardening.

Oh, I would like to see everybody introduce themselves to everybody in their state.  You Illinois people better get cracking, there's a ton of you : - ).    I have started to keep a big spiral notebook.  It was the only way I could keep track.

Obviously I can't do all of this by myself.  There are just to many bad days, but if you all want to do some of these things or others like them we could pull it off.  The more people that volunteer to help on committees the less everyone has to do and the more everyone would enjoy it. If we could get 15-30 people for each committee  (book/garden/whatever clubs could be as little as two so that wouldn't matter) everyone would only have to do a day or two a month.  Also, when it is your day you may not have to do anything if nobody is going in the hospital or no new people show up.  This won't be like volunteering to do a few things for the PTA and the next thing you know you can't recognize your own husband in a line up.  (Yep, been there)  Also, the more people that help the more there are to fill in if someone has to go out of town or is too sick to participate.


Obviously I would volunteer to organize and coordinate things.  I would keep lists of who is on every committee and make sure that everyone has the list they join so you can email people if you can't do your day.

I am still working on the google map thing.  

If you like these ideas and want to participate just tell me what you would like to do and I'll start getting the lists ready.  Also, let me know when you would want to do something.  If you want to "host" a morning coffee in a chat room that would be great.  If you want to do the welcome wagon but can't do it on Mondays let me know that also.  I would like to see eveyone volunteer for a rotation on the good news post.  Give you something happy to think and write about.

OMG I have forty five minutes to look like a million and I feel like a penny.  BYE

Jan
29 Responses
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Avatar universal
This is great.  I think a cyber party is well in order.  Don't worry about breakfast, it's on me.
Thanks Mary 53 for the invite!  Some of you may know me as Gatsby

Look forward to Saturday!
~Tascha
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Avatar universal
Hi Jan... I live down near Melbourne, in the little southern state of Victoria. I have a friend in Idaho, and there is presently an eighteen hours difference, ( we are ahead of the U.S.)so when I get on my computer here, she is in bed....but as you say, we can still post. Never know, could find a nightowl over there. :-) hugs to all...Helen..
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106886 tn?1281291572
Hi!

I just E-mailed this thread and a special request to Mary (RavenLady) to see if she is able to host a party Saturday night. She is the best.

Paula...once again, you read my mind (how do you do that?). I was recalling, too, the times Mary would post the weekly schedule of upcoming surgeries. Amazing and so supportive.

Also, as Paula mentioned, it was neat to catch up on the posts from both near and far  the next day and even into Monday. On Sunday morning, Tascha would drop by (the cyber party) with Cinnamon rolls and orange juice ....sometimes spiked!.... before she started her day. I will Email her, too, by the way.

OK....coooool idea.

And, hey, there's room for all of us....and thanks to MedHelp the space is even bigger....YIPPEE!

Love, Mary
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Avatar universal
Neat idea Jan.  I think that sounds fun.  It would be nice to have times where we could talk in "real time" rather than questions just waiting on the board.  Plug me in where you think I could help the most.  

I think it would be nice if several of us could give our opinions on each post.  Sometimes posters only get one response but would like to have several opinions even if they are in agreement.  Just a thought.

Shelly
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272338 tn?1252280404
  First I want to thank all of you for your care and concern while I was sick this past week. It is nice to know that so many people care!
  Jan I agree with you about "the neighborhood" but you know what? I feel much closer than that. I feel as if this forum is an extended family. I too have taken to writing in a spiral notebook so that I am able to keep track of names, birthdays, surgeries, etc. If I didn't I would be totally lost. I do good to remember my own name sometimes!
  To those of you who have been fortunate enough to not have ov ca, that does not mean that you have to leave or be afraid of taking up space. We love to hear great news like that! And if there was anything that we could do to help you get through that time of not knowing, well, that makes us feel good too.
  You Aussie ladies. Some of us are night owls. I regularly chat on another forum with a gal from "down under" as I am usually up fairly late at night. Just post a message sometime.
  I will try to help out where ever I can. After all, thats what family does.
                                                Love, Chris
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119341 tn?1232563757
I never got to participate in the cyber parties. I didn't have the internet at home at that time. When I finally got it the parties stopped. Go figure. But they were wonderful reading on Monday mornings. Those ladies really knew how to party. I miss it. Raven was not only the host of the cyber parties, but she also had a list or a very good memory of everyone that had upcoming surgeries, and she would post something the day before or the Friday before. She was very good at it, made everyone feel special. At least it made me feel special that she remembered.

Jenny-go to the archives and look up some of the cyber parties. The Aussie ladies partied when we went to bed. That is what made the parties special. It didn't matter what time you posted. Someone would come on at all hours and pick it back up.

Helpful - 0
229895 tn?1261601948
I think it is a great idea but unfortunately due to the time difference between Australia and the states I won't be able to join in as I am normally posting when you are all snoozing. I hope this is the start of a good year for all of us.

Hugs to all

Jenny
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Avatar universal
Thank you so much for this post Jan, I have been lurking for a couple of weeks now and posted once or twice but was feeling that as i am not diagnosed i shouldn't be invading your much needed space. But now you have given me the strength and courage to go on and make a post about what is happening for me at the minute.

If i stay around, i'm a book lover, so maybe could start a thread for books? But time will see i suppose....

Thank you to you all x
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329994 tn?1301663248
I didn't see your reply about posting the birthday or good news until after I had already posted.  If someone tells me what to do, lol, (I take good directions), I would be more than happy to do that.  Just let me know :)
Colleen
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282804 tn?1236833591
Helen:  Those of you that are in completely different time zones or sleep patterns can always posts the next days list of birthdays or surgeries or chemo's etc.  That is the perfect time to do it.  Also those of us like Deandra, myself and i am sure others could have our own late night parties.  It is always hard to wrap my brain around time zones, but when I looked at Austrailia depending where you are it is somewhere in between 1:15 PM and 5:45.  That is a big time difference, but still there are some overlapping times depending on your schedule.  What city do you live in?

Mary:  That would be great if you could contact her.  Maybe she would do the honors and host the party.  I hear she was very good at it.  If not maybe one of you ladies that participated could get the ball rolling.

Sandy:  That is really great news.  I hope it always stays that way.  When you come around, don't lurk. Come in and say hi!   I am sure we would all ask that you take what you know out in the world and you tell as many women as you can get to listen; and you will be surprised how many really start to listen.  Praying for and reaching out to strangers is what I believe Jesus has called us to do.  Whatever our individual beliefs, most everyone on here can agree that basic human kindness and compassion is reason enough to reach out.

Sharon:  Thank you for your kindness.  I think that is a wonderful idea.  Maybe we can find someone who would be willing to teach spanish.  Perhaps you can teach them something they would like to learn or maybe of group can get together to learn something.  It would be easy enough.  You would just have the tutor write in spanish with an english translation and it would conversational stuff so I do think it would be easier to pick up.  You would have to respond in mostly spanish and they could correct  it and also write something new.  When I took it in college (like Algebra got A's didn't retain it) we learned by conjugating verbs and by categories like food, occupations, types of buildings, shapes, colors, etc.  It was really fun and had I used it I am sure I would have retained it.  No, the times are in SimplyStars CST.  That would be 7 your time.  I have always wanted to travel to Oregon and Washington.  Except Alaska the only states I have not been to.

Thanks everybody you all are wonderful
Jan

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Avatar universal
Jan, you are such a wonderful, warm person! Your posts have been so helpful to me and you are such a joy! This might sound weird, but do you know what I would like to do? I want to learn Spanish and I don't know where to begin!! Is anyone interested in helping me out with this? I understand conversational is the easiest way to learn. I need a Spanish speaking buddy :-) I'm not sure how it might work, but I'm willing to ask my neighbors what they think of the idea :-)

I will try to log in to the chat room sometime. My time is so much less now that I'm back at work...by the time I get through traffic and make it home I'm exhausted and have do get ready to do it all again the following day! Are the chatroom times in Eastern time zones?

Sharon
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Avatar universal
Hi Sandy.. it's good to hear that great news. I hope you continue on throughout life staying well....hugs...Helen..
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356929 tn?1246389756
I, like Colleen , have been reading the posts  for about 2 months now. I am so impressed with the knowledge and the caring that is expressed from all of you. I finally found out today that I do not have cancer as feared. I had some of the symptoms and with your help, I was able to find out so much about this hideous disease. I was able to ask questions of my Dr.that would never have occured to me before I came to this "neighborhood".
   I learned a lot --mostly that this disease doesn't get nearly the "press" that it deserves, that much funding is needed and public awareness is so necessary. The more people that learn about this cancer the more people will be informed and be advocates for their own care before the disease becomes advanced.
     I had just a niggling little pain in ovary that I thought was Diverticulitis.. felt just like it.Also backache.  Luckily my Gyn. wanted to rule out anything ovarian. Had the US which showed a 2mm solid mass on left ovary, 2 fibroids and fluid in uterus. Had the CA 125 which was 7 but  I learned from you folks it wasn't necessarily accurate in all cases. I was told by my Dr.  I could just monitor these things. Being the worry wart that I am, I opted to have ovary and fallopian tube removed. It did indeed prove to be benign which Dr. suspected but it's always good to be sure. (I am post menopausal so removal of ovary wasn't a problem) . I just wanted you to know how appreciative I am for this forum. I will continue to "lurk" from time to time if that's o.k. and any information I have gleaned from you will definitely be passed on. You are a wonderful group.. I will keep you in my prayers even though I don't know you. Again, thank you for being there.,
Sandy
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106886 tn?1281291572
This is a post from Apr 02, 2007 12:00AM To Ravenlady...Ravenlady and Tascha started the Cyber Parties about two years ago. I used to arrange my Saturday nights around them and will again. This is a comment that was made after the party from one of the members.

"Thanks for the lovely cyber-party saturday night. I was very high strung just thinking of upcoming test results.
I had fun and I didn't even think about the test.
You and all the other lovely ladies made my evening go by fast to where I was actually tired." (Post from a member)


AND....get this!!! We had 92 posters... (not nessarily 92 different people, but posts...it was hopping). I will send RavenLady an Email to let her know we are having a party. Love the idea!


Love, Mary
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Avatar universal
Hi Jan... You've wheeled out some good ideas,  :-) but it's a little hard for us down in the Southern Hemisphere to be here at 'peak hour'. I generally post when you lovely ladies are getting your beauty sleep, but still there in spirit. Wishing everyone well, and happy times ahead for us all...hugs....Helen..
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329994 tn?1301663248
Thank you! That is very sweet of you!  It is so nice to be able to come on here and find answers and talk to others that are feeling the same way - the frustration with doctors, and just having someone who understands that the way you are feeling matters and is not normal for you.  Anyway, I wish desperately that I had some answers for you all and that there was not this terrible disease.  My heart and prayers are always with you. Thank you for making me feel so welcome.
Colleen
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282804 tn?1236833591
I would like to set up a time or a post or something with a signup sheet for some of these things we have talked about. Any suggestions on how best to do that?

Lvfrogs: if you can't be on to join in a party or a chat maybe you could be one of the people that volunteers to put up a birthday post once a month or post the good news post once a month.  Those are things you can do anytime of the day, when you have time.  There are plenty of things you can do if you can't commit to a certain time.
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282804 tn?1236833591
Of course you would be welcome and anyone who would say otherwise wouldn't be.  If you couldn't be part of us than neither could SimplyStar or many others and that is just not acceptable.

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329994 tn?1301663248
I just wanted to say that I am one of the women that reads the posts and sometimes responds and who doesn't have cancer. I am still trying to find out what IS wrong with me, having all the signs of ovarian cancer and struggling with my gyno to do something.

I want to say that I have been helped SO MUCH and have learned SO MUCH from the women on here. I wish I could express to you all how grateful I am.  I feel everyone's compassion.  I don't know if I can participate in the CYBER parties or the morning chats, but I hope that if I can, I will be welcome.  If I can help in anyway, I would love to be able to.  You are all in my prayers. Thank you.
Colleen
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167426 tn?1254086235
The gloom and doom is about ready to leave, we have the chat room up and going now and will be reviving the CYBER partys this Sat night. Get out those smiles and join us for some lively times.  Marty
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Avatar universal
I totally agree!!  I too feel the gloom over us.  I have been here for almost two years now, and have seen people come and go, seen people die and just get diagnosed.  I am feeling very depressed about everything now, and I can feel the pain of many people.  I am glad I you can feel it too.  Shannon
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Avatar universal
You're always worth a million in my book! :) Thanks for the post -- still trying to digest it all. Love you lots!! :)
Hugs, Fran
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167426 tn?1254086235
think I fixed it now   I am so new to chat rooms, there are too many buttons to push   lol
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167426 tn?1254086235
will try to go fix it right now
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