What does this say about what people believe about Ovarian Cancer?

LaundryQueen

debp26 said:

Leesa there is HOPE
Hi Leesa. I was told by my doctor that if we are not Stage 4 we have a chance at a complete remission because the disease didn't get into our organs/bloodstream. I have two little boys, a 2 year old and a 4.5 year old and I completely know that this is the scariest time of my life. There are moments when I feel guilty that I had kids fearing the worst. We must have faith, hope and believe. My doctor is constantly telling me that I am NOT dying! As a matter of fact I just finished my last treatment yeaterday and I'm in remission. Since my second treatment my CA125 went down to 4. He tells me Leesa, that new drugs are always coming out, and that I have to live for today. It sucks to have a diagnosis and believe me, I have my days too. I have contact the Cancer Hope Network and spoken to several survivors. Wanda was diagnosed at 42 and is currently 56 and has had no recurrances. Berdadette was diagnosed in her 30's and today is 46 and she too has had no recurrances. Both were Stage 3C. There are tohers too! I have a friend that will be 50 this year and she went through a NINE HOUR surgery for Stage 4. She was in remission for two years, and is getting treatment today. She is SIX YEARS with disease and FOUR of those years she is with active disease. We just went Apple Picking and she just arrived home two days ago from the Bahama's. She is my lifes inspiration and we all need that. Cancer sucks and my heart goes out to you.

What do you say...?
I so appreciate this thread that Leesa started.

I find that I am ambivalent about telling my story to people who ask for details of my recent "health condition."

On one hand, I feel some sense of obligation to teach women about the disease; and on the other hand, I just want to wake up from the nightmare that I lived through not talk about it.

Sigh...

childofthestars

LaundryQueen said:

What do you say...?
I so appreciate this thread that Leesa started.

I find that I am ambivalent about telling my story to people who ask for details of my recent "health condition."

On one hand, I feel some sense of obligation to teach women about the disease; and on the other hand, I just want to wake up from the nightmare that I lived through not talk about it.

Sigh...

So agree
I just came across this thread and so agree with what you are saying. It's a real balancing act..............
Michelle x

pattysoo

What do people say?
My favorite comments have come from my former coworkers who tell me that The Rapture is right around the corner and we'll all be taken up together. I can't help thinking that would be a much nicer way to end my life than cancer. They look at it as, "We're all in the same boat, really." It makes me smile.

kikz

pattysoo said:

What do people say?
My favorite comments have come from my former coworkers who tell me that The Rapture is right around the corner and we'll all be taken up together. I can't help thinking that would be a much nicer way to end my life than cancer. They look at it as, "We're all in the same boat, really." It makes me smile.

I have been in remission since Novemember
and it seems that most of the people in my life have let out a big sigh of relief and gone on their merry way. I don't expect or want to be the center of attention as the "cancer girl" but I must admit that I am kind of lonely. I retired and even though I remain in contact with my some of my co-workers, I miss the day-to-day of our relationship. I understand that people are busy but I still need everyone as much as I did for the last year. I have been having a couple of rough days. I think because it is almost time for my CA125. I felt anxious yesterday and today I just feel down and I have no appetite. I can't express this to my mom because she gets too upset and I don;t want to burden my son; he's gone through so much. I am usually upbeat and try hard to face each day with hope, optimism and joy; but I can't be strong all the time. I'm sure I am not telling you ladies anything new.

Karen

anicca

kikz said:

I have been in remission since Novemember
and it seems that most of the people in my life have let out a big sigh of relief and gone on their merry way. I don't expect or want to be the center of attention as the "cancer girl" but I must admit that I am kind of lonely. I retired and even though I remain in contact with my some of my co-workers, I miss the day-to-day of our relationship. I understand that people are busy but I still need everyone as much as I did for the last year. I have been having a couple of rough days. I think because it is almost time for my CA125. I felt anxious yesterday and today I just feel down and I have no appetite. I can't express this to my mom because she gets too upset and I don;t want to burden my son; he's gone through so much. I am usually upbeat and try hard to face each day with hope, optimism and joy; but I can't be strong all the time. I'm sure I am not telling you ladies anything new.

Karen

Hey Karen, I put on 5 pounds
Hey Karen, I put on 5 pounds before my last CA-125 draw, so I would say, yes, it's anxiety. (Can we trade next time, and I'll stop eating, while you pig out?) I also know what you mean about not being able to talk to your mom or burden your son. After reading this board for the first time, I shared too much with my husband, and got him so anxious he had trouble sleeping. He actually said maybe I shouldn't come back here. I didn't for a while, but then I got it under control, and have found this is THE place to bring my concerns, questions, fears, relief, and everything else to do with cancer.

NJW

I appreciate this entire thread
I appreciate this entire thread. I am not sure how to even answer the "How are you?" if/when someone asks me. We are already dealing with one cancer (lymphoma) in a young family member :-( and one of my best friends is always so "up," sometimes I can scream... I AM a realistic person in general, leaning a tad on the optimism side. But if I say ANYTHING at all - like he just almost died two nights ago from a cardiac side-effect of the chemo. It is always a positive response and she acts like how can I not see how WONDERFUL everything is? The day after returning from the hospital from my latest abdominal surgery she was asking me if I wanted to go for our usual 2.5 mile walk (no, she was not joking)... I felt like a failure.... I was in so much pain.

I have said so far to everyone, "I have good news about the pathology results!" but my parents I could hear in their voices are upset anyway because they have lost too many people to cancer, or really - to the chemo. But I do not know if I need chemo. I don't really know anything yet except I will probably need more surgery and I am NOT looking forward to that because my abdomen is already like a tic-tac-toe board.

I feel kind of lonely. Aside from this one perky friend, there is a distinct lack of "How are you?" or "Do you have the pathology results back?" from anyone else in my circle of friends. It's weird. One part of me wishes they would ask, and the other part of me is very relieved because I don't want to talk about it.

And WHY do I feel I MUST put that happy happy happy enthusiasm into my voice saying, "GOOD NEWS!" before I say "yes, it is ovarian cancer, BUT..." and then continue with how it is probably early, although fast growing it is low-grade (!?!?) that ... blah blah blah....

I AM upbeat... I am confident this will be OK... but awwww, come-on.... I have been through an OC scare 15 years ago when I had a tumor, they went as far as to tell me it probably was ovarian cancer, and I did enough of crying my eyes out and feeling panicky, and practiced calming and breathing techniques. But my children were little then. I am older now and they are young adults, and I feel much calmer this time around - calm even though this time it IS one of the things I thought I feared most.

I posted about my type of cancer and no one has responded yet, but I am not surprised. Only a fraction of a percent of OC patients have that specific type which is why it has taken a month to even find out the type, and the only literature I found on it was from 11 years ago so I know it does actually exist but the literature I read all the women died - but they all had late stage. They said they didn't know how to treat it but that was 11 years ago. Anyway, that is why I am not set up with an oncologist yet - my doctor is looking for the "right one" for me.

Whew - I just wrote more than I wanted, and I have unexpected tears in my eyes because I have NOT CRIED this time, so I don't know why I am now.... I just feel lonely. I have been so upbeat with my husband and kids and others and have not allowed myself ANY ANY ANY sorrow or self-pity this time, so no one is at all worried (except my parents - they don't say so but I heard it in my mom's voice last night). We have enough worry about the other family member with cancer.

NJ

kikz

NJW said:

I appreciate this entire thread
I appreciate this entire thread. I am not sure how to even answer the "How are you?" if/when someone asks me. We are already dealing with one cancer (lymphoma) in a young family member :-( and one of my best friends is always so "up," sometimes I can scream... I AM a realistic person in general, leaning a tad on the optimism side. But if I say ANYTHING at all - like he just almost died two nights ago from a cardiac side-effect of the chemo. It is always a positive response and she acts like how can I not see how WONDERFUL everything is? The day after returning from the hospital from my latest abdominal surgery she was asking me if I wanted to go for our usual 2.5 mile walk (no, she was not joking)... I felt like a failure.... I was in so much pain.

I have said so far to everyone, "I have good news about the pathology results!" but my parents I could hear in their voices are upset anyway because they have lost too many people to cancer, or really - to the chemo. But I do not know if I need chemo. I don't really know anything yet except I will probably need more surgery and I am NOT looking forward to that because my abdomen is already like a tic-tac-toe board.

I feel kind of lonely. Aside from this one perky friend, there is a distinct lack of "How are you?" or "Do you have the pathology results back?" from anyone else in my circle of friends. It's weird. One part of me wishes they would ask, and the other part of me is very relieved because I don't want to talk about it.

And WHY do I feel I MUST put that happy happy happy enthusiasm into my voice saying, "GOOD NEWS!" before I say "yes, it is ovarian cancer, BUT..." and then continue with how it is probably early, although fast growing it is low-grade (!?!?) that ... blah blah blah....

I AM upbeat... I am confident this will be OK... but awwww, come-on.... I have been through an OC scare 15 years ago when I had a tumor, they went as far as to tell me it probably was ovarian cancer, and I did enough of crying my eyes out and feeling panicky, and practiced calming and breathing techniques. But my children were little then. I am older now and they are young adults, and I feel much calmer this time around - calm even though this time it IS one of the things I thought I feared most.

I posted about my type of cancer and no one has responded yet, but I am not surprised. Only a fraction of a percent of OC patients have that specific type which is why it has taken a month to even find out the type, and the only literature I found on it was from 11 years ago so I know it does actually exist but the literature I read all the women died - but they all had late stage. They said they didn't know how to treat it but that was 11 years ago. Anyway, that is why I am not set up with an oncologist yet - my doctor is looking for the "right one" for me.

Whew - I just wrote more than I wanted, and I have unexpected tears in my eyes because I have NOT CRIED this time, so I don't know why I am now.... I just feel lonely. I have been so upbeat with my husband and kids and others and have not allowed myself ANY ANY ANY sorrow or self-pity this time, so no one is at all worried (except my parents - they don't say so but I heard it in my mom's voice last night). We have enough worry about the other family member with cancer.

NJ

NJ
It is a very lonely disease. I know what you mean about not knowing what to say to people. If I give good news they say, I knew you would be okay. I have to stop myself from screaming, "It's ovarian cancer, there is no okay." Don't get me wrong, I am optimistic and stay upbeat most of the time. I did have a hard time last week because I knew I would be going in for the bloodwork for my latest CA 125. Once I get the results I try to forget about the monster for the next three months. I am fortunate that the people closest to me understand the reality of the disease. They celebrate the good news but are mindful of the possibilities ahead. This keeps us all in a mode of gratitude; appreciating today, which is all anybody really has.

And of course having this board; these wonderful women to "talk" to makes the challenges easier and the highs higher.

Love you sisters,
Karen

Mwee

NJW said:

I appreciate this entire thread
I appreciate this entire thread. I am not sure how to even answer the "How are you?" if/when someone asks me. We are already dealing with one cancer (lymphoma) in a young family member :-( and one of my best friends is always so "up," sometimes I can scream... I AM a realistic person in general, leaning a tad on the optimism side. But if I say ANYTHING at all - like he just almost died two nights ago from a cardiac side-effect of the chemo. It is always a positive response and she acts like how can I not see how WONDERFUL everything is? The day after returning from the hospital from my latest abdominal surgery she was asking me if I wanted to go for our usual 2.5 mile walk (no, she was not joking)... I felt like a failure.... I was in so much pain.

I have said so far to everyone, "I have good news about the pathology results!" but my parents I could hear in their voices are upset anyway because they have lost too many people to cancer, or really - to the chemo. But I do not know if I need chemo. I don't really know anything yet except I will probably need more surgery and I am NOT looking forward to that because my abdomen is already like a tic-tac-toe board.

I feel kind of lonely. Aside from this one perky friend, there is a distinct lack of "How are you?" or "Do you have the pathology results back?" from anyone else in my circle of friends. It's weird. One part of me wishes they would ask, and the other part of me is very relieved because I don't want to talk about it.

And WHY do I feel I MUST put that happy happy happy enthusiasm into my voice saying, "GOOD NEWS!" before I say "yes, it is ovarian cancer, BUT..." and then continue with how it is probably early, although fast growing it is low-grade (!?!?) that ... blah blah blah....

I AM upbeat... I am confident this will be OK... but awwww, come-on.... I have been through an OC scare 15 years ago when I had a tumor, they went as far as to tell me it probably was ovarian cancer, and I did enough of crying my eyes out and feeling panicky, and practiced calming and breathing techniques. But my children were little then. I am older now and they are young adults, and I feel much calmer this time around - calm even though this time it IS one of the things I thought I feared most.

I posted about my type of cancer and no one has responded yet, but I am not surprised. Only a fraction of a percent of OC patients have that specific type which is why it has taken a month to even find out the type, and the only literature I found on it was from 11 years ago so I know it does actually exist but the literature I read all the women died - but they all had late stage. They said they didn't know how to treat it but that was 11 years ago. Anyway, that is why I am not set up with an oncologist yet - my doctor is looking for the "right one" for me.

Whew - I just wrote more than I wanted, and I have unexpected tears in my eyes because I have NOT CRIED this time, so I don't know why I am now.... I just feel lonely. I have been so upbeat with my husband and kids and others and have not allowed myself ANY ANY ANY sorrow or self-pity this time, so no one is at all worried (except my parents - they don't say so but I heard it in my mom's voice last night). We have enough worry about the other family member with cancer.

NJ

Dear NJ
I could soooo relate to your entire thread from the statistics, the well-meaning public that you feel you have to cheer up instead of the other way around to the worry about your family already dealing with another family member with cancer. I know that I would have felt lonely (and crazy) if I hadn't found this board. Here I've been able to share and be understood. Also, I learned invaluable imformation about different treatments and their side effects. Finding the right ONC is key and I'm glad your doctor is taking that so seriously.

You are so welcome here........... (((HUGS))) Maria

lindachris

Lisa13Q said:

Well, I do think you all look great and I'm building a resent...
ment because frankly no one tells me "I look great"..what am I? sliced bread? Must I get cancer to get a compliment on my looks....I have attached my recent portrait....I got a little hairy after they removed my ovaries, but I think I look great too!!! Smiles to you all!!!

A smile
Thanks for the smile. My wife Linda needs to see some of the feistiness of this group. I've yet to get her on here. Someday maybe.

Chris

LaundryQueen

lindaprocopio said:

I get the "How (pause) ARE you?" and that tiny concerned frown.
You know the look. They are communicating silently that they have heard you have cancer with that pause, that emphasis, that sympathetic head tilt.

HA! I don't let anything people say in their ignorance and ackwardness bother me. It's just not worth it. They're doing their best, even if their best is pretty weak. The wisdom we get from our journey isn't something that can really be taught, I don't think. Most people can't handle awareness of their own mortality, and if they don't need to face it I am happy for them. When people ask me, "How (pause) ARE you?" I usually just say "GREAT!, And you?"

You look GREAT!
This might be a little twisted but I am so tempted to say to the next person who says "You look great" to me: "Thanks, you look great, too--makes you wonder, doesn't it?"