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Tybear and those with OVCA
Hi Tybear, What you wrote on the other thread really jumped out at me. I feel it needs to be addressed (yet again). You said in reference to losing your ovaries "I know somedays it doesn't seem like anyone on here actually has cancer, but some do". (Incidentally I hate that freaking castrated term, but, compared to what you are going through, it is small potatoes).
I came upon this site when I was waiting for surgery to determine if I had ovac. I didn't know where else to post. I did not have ovca. I did have a total hysterectomy. I feel I have "bonded" with so many of you. HOWEVER. I worry about the ... line that is drawn....between those that got the ovca diagnosis and those that did not. I think that if I had gotten that diagnosis, I fear I may have moved on to another site, and I know some women have, because, as you say, it doesn't seem like anyone here actually has cancer. I really agree with you. That being said, Mary53 had ovca. She loves me anyway! She has helped me more than any doctor, more than anyone in my "real" life actually. I can never thank her enough... I also love it when Dian drifts by and speaks... another wonderful woman who had ovca. I plunked into this site because there didn't seem to be a section for "Ovarian Concerns" or whatever, and all our stuff seems to meld together somehow.. But that being said, honestly, would you prefer that those of us who have gone through surgery, and not had ovca, just leave? I care so much about each of you, I could list all your names. I don't post much because I feel it is wrong to now.
Thanks. KT
I came upon this site when I was waiting for surgery to determine if I had ovac. I didn't know where else to post. I did not have ovca. I did have a total hysterectomy. I feel I have "bonded" with so many of you. HOWEVER. I worry about the ... line that is drawn....between those that got the ovca diagnosis and those that did not. I think that if I had gotten that diagnosis, I fear I may have moved on to another site, and I know some women have, because, as you say, it doesn't seem like anyone here actually has cancer. I really agree with you. That being said, Mary53 had ovca. She loves me anyway! She has helped me more than any doctor, more than anyone in my "real" life actually. I can never thank her enough... I also love it when Dian drifts by and speaks... another wonderful woman who had ovca. I plunked into this site because there didn't seem to be a section for "Ovarian Concerns" or whatever, and all our stuff seems to meld together somehow.. But that being said, honestly, would you prefer that those of us who have gone through surgery, and not had ovca, just leave? I care so much about each of you, I could list all your names. I don't post much because I feel it is wrong to now.
Thanks. KT
As one of those with the OvCa dx, I have to admit I don't post often. Still going through chemo, I am often too sick to do anything more than lurk and read. But the main reason I don't post very much is I don't want to scare or discourage anyone who hasn't been diagnosed yet. I do have to say that I don't think I could have gotten as far through this nightmare as I have without all of these wonderful women on this forum.
Dear Tybear
I am new on the site since yesterday & waiting for a diagnosis. i can quite understand how it is frustrating to listen to the anguished wailings of the likes of me when you are dealing with what you are dealing with.
thoughts on the term 'chemical castration' - i think the person who used this term was expressing a lot of self hatred. I don't know yet if i will be facing total hyster. or what yet (ask me in a week), and so have not yet had this experience. I am 39 with no children (would've liked 'em ). i know it is a complex one to negotiate, but I also know that a lot of women have dealt with it with aplomb. I can think of a couple of very foxy ones of my aquaintance ( one quite young ). I think your age bodes well for you, and to go through all you have, well that makes you pretty amazing.
Courage, Rx
I am new on the site since yesterday & waiting for a diagnosis. i can quite understand how it is frustrating to listen to the anguished wailings of the likes of me when you are dealing with what you are dealing with.
thoughts on the term 'chemical castration' - i think the person who used this term was expressing a lot of self hatred. I don't know yet if i will be facing total hyster. or what yet (ask me in a week), and so have not yet had this experience. I am 39 with no children (would've liked 'em ). i know it is a complex one to negotiate, but I also know that a lot of women have dealt with it with aplomb. I can think of a couple of very foxy ones of my aquaintance ( one quite young ). I think your age bodes well for you, and to go through all you have, well that makes you pretty amazing.
Courage, Rx
I could not agree more. This site has been a Godsend. Everyone is so gracious and giving. We should all consider ourselves lucky to find this place. Before dx, we don't know if we have cancer and then by the time we find out - friendships are made and bonds are formed and you just want to help the next frightened woman who comes along. You know, pass it on. What a wonderful world we would be living in if we could all just pass it along. No dividing, no lines are drawn, just women coming together and sharing info that can change lives. Yes, some do get the ovca dx, but what wonderful help they are to those who don't. We are all here for each other and that is the way it should be. I love you all. Godspeed
~Tascha
~Tascha
Thank you all for your responses. I didn't mean to be ignorant to the fact that I know many of you have bonded and made everlasting friendships. I just feel lately, that the focus of the site has really drifted away from the concerns about ovarian cancer that got this site started in the first place. I'm sure the person who posted about not wanting to be chemically castrated should she have to have a hysterectomy didn't mean it in a mean spirited way or to intentionally upset anyone - I just think she forgot that she's on an Ovarian cancer site and like I said before, many women on here have already had life saving hysterectomys. I hope one day I too, can laugh at the ignorance of some people, but I guess my wounds are still too fresh. I never dreamed at 27, I would have had to go through all I've gone through - certainly not having a hysterectomy and losing the ability to have more children. The cancer, I can handle! I think the women on this site have more knowledge than the average person about what struggles lie ahead. I'm not asking anyone to not post because you don't have cancer, just to remember when you do post, be thoughful to the other women on this site.
When I first began posting on this, there were not near as many posting that has ovarian cancer as what there is now. I am sure this site has traveled via word of mouth from those of us receiving much needed advice. I could not imagine being you either having to deal with what you are going thru. I am 31 and I have been dealing with up and down scary ovarian /uterine issues since last year at this time. I hope all goes well for you and I hope you are able to help those us dealing with the "what if" of cancer. I am sure we will all be more aware of fellings and issues as we post.
Kristie
Kristie
I'm relatively new to this site and I am one of the few that is struggling to beat ovca. It did occur to me early on that most of the posts were coming from those who were not diagnosed with this illness. But there is still a strong common denominator among every poster and that is the concern that what they are dealing with could be cancer. Having lived through the devastation of hearing those words confirming the diagonsis, I completely understand and embrace those of you who are presently in limbo waiting and wondering. And having just met a cyber friend for the first time last weekend, I can assure you that these internet relationships are the real deal!
I am here to learn, to support and to receive support. I wish I had known about this site when I was going through treatment but better late than never, I'd say. I look forward to getting to know many of you better as we walk through our respective journeys.
Christa
I am here to learn, to support and to receive support. I wish I had known about this site when I was going through treatment but better late than never, I'd say. I look forward to getting to know many of you better as we walk through our respective journeys.
Christa
There is no way I can articulate any better what has been said. I would have gone crazy if it were not for this site. I have made one particular friendship that is as real to me as my own family. Without her I would still be led on my bed crying into my pillow in fear. I am crying while I write this because she is the most selfless wonderful person in the world and I would never have met her if I didnt come here. I would never embarass her by pointing her out but she knows who she is.
I am only to aware that it is a forum for ovarian cancer, and as I said before sometimes I feel a bit awkward posting when my cyst has not been diagnosed. I trawled the internet for days looking for a support group and this was the only one I could find. When I found it it was like coming home. My husband said to me the other day talk to me, I said I dont want to talk to you Im talking to the girls lol. I dont know whats going to happen to me but god knows I know farrrrr more than I would ever have known had it not been for this forum. All I had was a photocopied leaflet from the hospital saying bring a dressing gown. When I found out I had a 20cm that could be cancer I felt like I had been hit over the head with a shovel. As soon as I posted Nat and a few other said yeah mine was huge too and I no longer felt like the moron who thought they had wind.
This place is precious and full of genuine love. I couldn't bare not coming on to this site anymore!
Anna x
I am only to aware that it is a forum for ovarian cancer, and as I said before sometimes I feel a bit awkward posting when my cyst has not been diagnosed. I trawled the internet for days looking for a support group and this was the only one I could find. When I found it it was like coming home. My husband said to me the other day talk to me, I said I dont want to talk to you Im talking to the girls lol. I dont know whats going to happen to me but god knows I know farrrrr more than I would ever have known had it not been for this forum. All I had was a photocopied leaflet from the hospital saying bring a dressing gown. When I found out I had a 20cm that could be cancer I felt like I had been hit over the head with a shovel. As soon as I posted Nat and a few other said yeah mine was huge too and I no longer felt like the moron who thought they had wind.
This place is precious and full of genuine love. I couldn't bare not coming on to this site anymore!
Anna x
Hey there, kiddo...dian here. I was diagnosed with IC ovc last year on April 25.....my chemo ended September 13.....that was 9 months ago and if I get a runny nose or cough I wonder about lung cancer....it's like having a monster under your bed or in your closet...it is much easier to deal with the monsters in the light of day but nothing can make them disappear. I read the posts everyday....sometimes I respond and sometimes I don't....just depends...those of us who have been diagnosed "malignant" have experiences the others here don't...I certainly wouldn't wish this on any of them....it is their good fortune to belong to the 99% club....that makes you all the more wise and valuable for your experience....however, the wisdom and insight you possess is way too much at your young age....nobody wants any of that regardless of age...and no it is not fair...it saddens me deeply to know you have this happening to you...I do believe, however, you are a strong woman .....yes you are young....you come to this site for a reason....perhaps you are looking to talk primarily to women who have the same diagnosis...who have experienced the reality of your diagnosis...being afraid is not the same as hearing the word "malignant"... are you angry ....there are no wrong emotions..give yourself permission to experience all that come your way....I am 56 and it is scary....I am thankful I wasn't forced to deal with this in my 20's.....but that is your lot in life....nobody can change that....please continue to talk...I will continue to listen.....we are on the same path....lets walk together....I know we can relate in ways that would be beneficial to each of us. My e-mail ***@**** ....talk to me please. I do think all the women here do bring their own experiences to the table...some make me die laughing, some make me sad, some educate me, some just share their lives with me...we all bring something to the table that nobody else can....that is our "spirit" and all the compassion and love it holds...there is true sharing and honesty and trust and even some love on the table...when you are ready it will still be there for you to taste.
Peace.
dian
Peace.
dian
AS Fran Dresher said "Cancer Smancher" we all have a bond because we are women with concerns about our health and everyone elses well being!! I have stage 3 and I did not move on I like it here!!! I cannot help alot of people myself because one day I was diagnosed and within days was in surgery and on chemo, without really being sick a day in my life. Most of you woman here know more about most things than me, just because I have cancer does not mean that I don't need help with surgical menopause symptons and a host of things similar to you all. So lets keep going with all of us intact!!! Knowledge is such power and power gives hope and faith! Have a nice day fellow Sisters!!
Okay, girl...this site is as much yours as anyone's...don't be silly... you have as much to offer as anyone else...we all bring something unique to this forum, and we are all needed here...there are women here who will benefit from your experiences....some might benefit from my experiences...put us all together and we are a vast ocean of wisdom, compassion, understanding,....we all want to help. That is why the silliness, comedy, nit pickiing, and all out caniving has a place here..... it keeps us all sane.....reminds us that we are indeed connected...not just here at home, but around the globe. It would be sad if we were missing your link in the global chain!
Peace, kiddo.
dian
Peace, kiddo.
dian
I am very grateful for this site...it keeps me sane to talk. I wish I had it years ago when my beloved brother was diagnosed with cancer. He told me "you don't ever truly know what is like until someone sits across for you and uses the "C" word to you." And I believe that is true. And while we could NEVER EVER have felt the same that he did, I wish I had had a site like this to come to for help.
We battled along with him--on every visit. I put my family on hold, left my job, and traveled out of state with him for every treatment. If he couldn't eat one meal, my mother and I would cook another and another until we got something he could actually eat. He would think he could eat it , we would cook it, then he couldn't. We talked hours and hours into the night, researched things and clinical trials for him, read to him, prayed and prayed and prayed some more--begged and begged.
Then, we lost him over a hospital error after 14 months. I went insane for a long time. I call it my "black hole." I was very suicidal for about two years because I didn't have any help or anyone to talk to--and when someone said something wrong or insensitive, I wanted to smash them. If a certain song played, it destroyed me. I wrecked my car on his birthday because I was crying too hard to see and too many people thought I should "be over it."
Well, I survived w/o killing myself over it somehow--but I still get really really down at times and it was 10 years last month. So when the my Gyn first mentioned that he thought it was possible that I had the "female" version of what my brother had, I went nuts again--but this time I found this site--which calmed me down, helped me to reason, and gave me someone to talk to when everyone else is in bed. I am deeply grateful for this site and all the wonderful women on it!
We battled along with him--on every visit. I put my family on hold, left my job, and traveled out of state with him for every treatment. If he couldn't eat one meal, my mother and I would cook another and another until we got something he could actually eat. He would think he could eat it , we would cook it, then he couldn't. We talked hours and hours into the night, researched things and clinical trials for him, read to him, prayed and prayed and prayed some more--begged and begged.
Then, we lost him over a hospital error after 14 months. I went insane for a long time. I call it my "black hole." I was very suicidal for about two years because I didn't have any help or anyone to talk to--and when someone said something wrong or insensitive, I wanted to smash them. If a certain song played, it destroyed me. I wrecked my car on his birthday because I was crying too hard to see and too many people thought I should "be over it."
Well, I survived w/o killing myself over it somehow--but I still get really really down at times and it was 10 years last month. So when the my Gyn first mentioned that he thought it was possible that I had the "female" version of what my brother had, I went nuts again--but this time I found this site--which calmed me down, helped me to reason, and gave me someone to talk to when everyone else is in bed. I am deeply grateful for this site and all the wonderful women on it!
Thank you, TyBear, and everyone for listening. I know we are all facing different things--some a fear (for now--and hopefully never more than that) and others a stark reality, but I do sincerely care about each and everyone fo you and all that you are going through.
Oh my...you brought tears to my eyes. Oh dear. This is why I stay. What a wonderful community of caring, strong, generous women!
I found this site after I had dealt with my diagnosis and was starting the journey of dealing with the aftermath. I felt that I had never truly addressed the whole cancer issue. I just felt stunned for about a year. I wanted to talk about it. I talked with a therapist about it. But, you know...I didn't know what I wanted to talk about. I did'nt know what I wanted to say. I just knew I needed "something" and didn't know what it was. But, I have to say...I found that "something" here. I found a purpose outside of myself...my family...my job. I found a place where I can share my experiences with women going through many of the thoughts, feelings, and emotions that come right about the time they start "watching that cyst."
I remember the first time I responded to Katie's post..what was that, Katie? About 15 years ago? Joking of course...but, I feel as if I have known Katie, Mary V. Tascha, Dian, Mickey, DebiR and on and on and on...for years.
Our only child (20year old wonderful daughter) was laughing at me at the holiday time while I was mixing a gin and tonic for myself for one of our "cyber parties." She walked by the computer (and me) and said..."Mom, you need some real friends!" I just laughed and smiled knowing that she would never wholly understand that you all could not be MORE real to me...you are my friends. You really wanted to know how I was feeling, how I spent my day...that I mattered. I matter to my family and friends...but, there is something special about bonding with the women on this site who have shared so much and in many cases have shared all but a cancer diagnosis.
I never dreampt that I would get connected to people "on line." I never dreampt that I would be able to figure out HOW TO BE on line in the first place! But, think about how much money is saved on therapy...To many of you (self included) this site is a form of therapy. And, what we will never know is how many women we are reaching if they are not posting...who knows how many women have found comfort along with new information when checking out this forum. I am amazed at the integrity of the women on these boards. I hope everyone who has two cents to add to these discussions will continue to post. There are nights I have to pick and chose what I am going to read...that is my perogative.
So, just pick and chose...and, keep coming back. And, remember...we are all in a position to change people's lives.
Mary
I found this site after I had dealt with my diagnosis and was starting the journey of dealing with the aftermath. I felt that I had never truly addressed the whole cancer issue. I just felt stunned for about a year. I wanted to talk about it. I talked with a therapist about it. But, you know...I didn't know what I wanted to talk about. I did'nt know what I wanted to say. I just knew I needed "something" and didn't know what it was. But, I have to say...I found that "something" here. I found a purpose outside of myself...my family...my job. I found a place where I can share my experiences with women going through many of the thoughts, feelings, and emotions that come right about the time they start "watching that cyst."
I remember the first time I responded to Katie's post..what was that, Katie? About 15 years ago? Joking of course...but, I feel as if I have known Katie, Mary V. Tascha, Dian, Mickey, DebiR and on and on and on...for years.
Our only child (20year old wonderful daughter) was laughing at me at the holiday time while I was mixing a gin and tonic for myself for one of our "cyber parties." She walked by the computer (and me) and said..."Mom, you need some real friends!" I just laughed and smiled knowing that she would never wholly understand that you all could not be MORE real to me...you are my friends. You really wanted to know how I was feeling, how I spent my day...that I mattered. I matter to my family and friends...but, there is something special about bonding with the women on this site who have shared so much and in many cases have shared all but a cancer diagnosis.
I never dreampt that I would get connected to people "on line." I never dreampt that I would be able to figure out HOW TO BE on line in the first place! But, think about how much money is saved on therapy...To many of you (self included) this site is a form of therapy. And, what we will never know is how many women we are reaching if they are not posting...who knows how many women have found comfort along with new information when checking out this forum. I am amazed at the integrity of the women on these boards. I hope everyone who has two cents to add to these discussions will continue to post. There are nights I have to pick and chose what I am going to read...that is my perogative.
So, just pick and chose...and, keep coming back. And, remember...we are all in a position to change people's lives.
Mary
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