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"Should we pull away when our news is bad?" continued...

kayandok
Posts: 1223
Joined: Jun 2008

I am taking the liberty to re-post LInda's words to be able to continue this discussion on a new thread. Her quote is below:

Nancy opens an interesting point for us to discuss, maybe not on this particular thread, but something I wonder about. Should we pull away when our news is bad? Is it too disheartening for this community when one of us is suffering? My CA125 is over 2000 and I have a CT/PET scheduled and expect some really lousy news. Lately I've thought that my own time may be very short, hope not, but it is what it is.

But I remember the personal messages I received from Teresa late in her journey. And Bonnie and Linda Dorian kept us in the loop almost until the end, too. And I took comfort that they were still communicating, still so ALIVE, still so THEMSELVES, even as their bodies were betraying them. I remember thinking, "I can do this when my time comes. This is bearable, do-able." Because there were moments of joy and humor in their days and their communications, even near the end. I was GLAD they shared it. It made me less afraid, for the unknown is the scariest for me. I know each of our cancers takes its own unique path and how it ends for one of us is not how it ends for all of us. But those examples of grace and courage and humantity; they help me feel more prepared, more at peace.

How do the rest of you feel? Was a glimpse of those journey's ends scary for you, or comforting to know that you will still be YOU, even at the end of the long long battle?

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I'm not sure it's a desire to remain private as much as we/they don't want to rain on anyone's parade with our bad news. It's almost like having to tell our families that they've confirmed a recurrence, or that the doctor has suggested Hospice. We don't want to make anyone sad. And I have to say this, although it's truly NOT directed at anyone in particular: sometimes the rah-rah section makes us feel like it's just plain WRONG not to be all perky and optimistic, 24/7. I really think that discourages people from posting the whole truth. And if you can't be honest, what's the point in posting at all?

We don't live in Never Never Land. People die from OC every day. Most women who are diagnosed at stage III or IV will eventually die from the disease. It might take 3 years; it might take 5, or 10, or even more. But let's be honest, ladies...no one is going to be offering us any great deals on life insurance.

Personally, I want to know what is going on with my cyber sisters. I want to know when you are scared, sad, ready to throw in the towel, or just mad as hell. It goes without saying that I want to hear the good news, but when I get emails and PMs and phone calls/texts that say, "I need to talk," it makes me feel like I have value as a friend and confidante. It makes me feel like maybe there is a reason I have been given this cross to bear. I would certainly hate to think it's all been for naught.

And the thought of any of you suffering all slone when you get bad news just makes me SO SAD. Don't keep it to yourself....whatever it is. If it's a blessing, share it; and if it's a burden, spread it around.

Carlene

JMulkey
Posts: 32
Joined: Apr 2010

I'm not fighting ovarian cancer, but I'm watching my mom go through it at 79 years old. You have both said you don't know whether or not to share with others, because you don't want to upset them, or bring them down. But with my mom, she absolutely will not talk about anything negative. She has not cried once. And she doesn't want any of us to cry. So how in the world can I ever share with her about this? I've gone through cancer, breast cancer, had nodes positive, had chemo, so I could hang in there with her through chemo, she had similar chemo to mine. But what happens if the day comes that the doctor tells her that with her age there's nothing else to be done? How do I talk to her then? I have absolutely no idea what to do. I'm so lost about it all. If people such as yourself share with others, then people like me, can possibly find a similar situation and maybe learn how to help our loved ones as much as we can, or as much as they will let us.

I truly hope I have not upset you by posting and if I have, please accept my most sincere apologies. But I just don't know where else to go but these boards for hope and help.

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

JMulkey - I don't know whether this applies to your relationship with your mother or not, but I'm 64 and have 2 daughters in their 20's. At this time in my life, I really feel there is nothing I crave other than the safety and well being of my children and husband. Even before my dx, I felt that way. I'm not saying that there aren't things I want to do, places I would like to go, etc, but I'm satisfied with what I've got and where I've been and what I've done. I would love to see grandchildren, and that would be my only regret if I don't last that long. So, right now, I want to protect my children from fear and also from regret. I want to improve my relationship with them (they both still sometimes have trouble seeing themselves as adults around me,) and would like to feel that when I do die, they will not be left thinking "I wish I had..." This is something that I am pretty sure they do not understand.

Even though your mother knows you have been through cancer yourself, she may not wish to increase your burden (in her eyes) with her own illness. She may also be whistling in the dark and want nothing more than for you to join her. In any case, speaking as a mom, you can't go wrong with simply letting her know how much you love and value her.

DB

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

JM....don't worry about upsetting us. We have cancer; it's hard to upset us.

To answer your question, I have 3 words for you: follow her lead. If she doesn't want to talk about "the end", then don't try to force her. If she chooses to live in an alternate reality, where she is going to live to be 120, that's okay. She knows how much negative stuff she can ingest without jumping out the window, and it's not helpful if you insist on trying to bring her back to Earth.

Find a group (this one is a good choice) where you can share YOUR feelings, and pour out your heart. We will understand your grief, your rage, and your frustration - without making your mom feel like she gave birth to Debbie Downer.

How you deal with your mom's illness and how she deals with it are NOT going to be the same. And each of you gets to decide when/if you cry. Your mom gets to say, "Don't cry in front of me," but she doesn't get to prohibit tears altogether. Crying is often what we NEED. It purges feelings and cleanses emotions. Just don't cry alone.

Carlene

kayandok
Posts: 1223
Joined: Jun 2008

Carlene!

I have always felt free to express my thoughts and feelings on either extreme, and know from that experience, that there is a climate of acceptance here. I do think it is actually easier to share many things here, than with those that we are really close to. Sometimes, sharing here first, has helped me process and then be able to be more honest with family and friends.

There is no formula to this stuff!!! As my friend who was dying told me a few years ago, when given the few options he had for choosing life support etc etc, "Kathleen, I don't know what the hell to do, I've never died before!"

I have learned so much from Bonnie, Jayne, Dorian and others who have been willing to share their thoughts and feelings even while they were dying. I hope I am brave enough to do the same.

And for those who want to pull away for whatever reason, I think that is ok too. I just wish Susan had let us know what was going on and we could have offered love and support. But, I guess that was her choice. SHe was so sweet.

k

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I didn't join this board until almost 1yr after diagnosis because I couldn't handle any 'scary' news. I remember reading Linda Dorion's spiral downward and ultimate death really scared me. Each death that followed was sad but no longer truly scared me. I remember when people weren't doing well I felt desperate for them to get better. I feared their demise because I knew I would probably be walking a similar path one day.

Now my ca125 is sky high, I've been through most of the 2nd line treatments and I fear I have limited options. I truly don't know why I feel myself not wanting to post bad news. I always talk about my disease openly to anyone who ask. It has nothing to do with privacy.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Sweet Nancy591

Please keep us posted on whatever you want to share with us. I probably wouldn't want to post bad news--not to spare anyone's feelings because I wouldn't want to think about it myself.

Have you seen the book "Heaven is for Real" about the 4-year boy who went to heaven and came back during his emergency surgery? His father wrote the book using the child's words. It is very astonishing and comforting to me. I want to believe that I will be with my family again after I am gone and that I'll see my brother Bruce (who died in a car wreck at age 17) again.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Carol,
I think you may be on to something about not wanting to post because I don't want to think about it or make it real. Your post made me so sad about the book because I don't want to die. I'm not ready to die. My Mother seems to think we struggle so hard to hold onto our physical bodies when something great is waiting for us on the other side. That doesn't give me much comfort. The book sounds interesting and I may check it out.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I feel that this is a personal choice that we each have to make, but I will forever be grateful to my brave sisters Bonnie, Saundra, Dorion and all. I often think think that as a parent, I continue to teach my children even though they are busy teaching their own. I hope that when my fight is over that I leave behind thoughts of how I handled the struggle rather than what disease overtook me.

I relish in hearing good news from our sisters, but if this isn't the place to run to when you need understanding and support.... then where?
(((HUGS))) Maria

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

I don't have an answer for the posted question; however, I made an observation about American Cancer Society (ACS) discussion boards. There are "other boards" for such topics as "long-term survivors", "side effects of chemo", "grief and bereavement", "in loving memory," etc. There is nothing for "nearing the end of life." Or whatever euphemism you want to use for "dying."

The ACS appears to avoid the whole issue of dying from cancer (or dying from the treatment for cancer) as if it were a taboo subject. As a friend of mine told her mother's oncologist when given the news that her mother was dying, she said, "Dr. we are ALL dying." And that's how I see it, too.

From the moment we take our first breath, we are moving in the direction of taking our last breath. I am OK with dying, what I am afraid of is pain. so my husband and kids already know that when my time comes, PLEASE, PLEASE tell the nurses not to spare the morphine.

I can see the point in moving away from this board onto a different board so as not to scare the "newbies" and still be able to stay in touch with friends.

Although I never met Susan, it's obvious from her postings that she was a lovely person who's light burned brightly until it went out much too soon.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Queen...I'm afraid I have to disagree with you on the issue of moving to another board, though I do agree that we all start to die the minute we are born. The difference between us and the average person is that we no longer have the luxury of thinking/saying "someday...not soon, but someday." It's ever so much easier to think of death as something abstract and so far in the future, there's really no need to worry about it. For us, it dances on the edge of every thought. Will I still be here, come Christmas? Will I live to see my children/grandchildren graduate from high school? I recently joined a gym, and even though the lifetime membership was a much better deal in the long run, it required a big payment up-front. Instead, I opted for the month-to-month. Not because I didn't have the one time fee, but because I would have to live 5 more years in order to get my money's worth from the lifetime investment. Will I still be alive in 5 years? Realistically, I have to say, "probably not."

I'm not willing to censor my posts for "death sensitive" issues. Sorry. If the ACS finds my posts objectionable, they will remove them and there is nothing I can do about that. It is, after all, their site. But I have not seen that kind of thing here. Not at ALL. I think the moderators have used great restraint. And the one time I took real issue with their use of administrative rights, I messaged them and got a prompt reply. (It had to do with Meghan, Linda Dorian's 14 year old daughter, whose account was taken off the board because of her age.)

This board is vital to the larger community of women who have been diagnosed with ovarian cancer. How many of you knew, pre-diagnosis, that you absolutely needed a gyn/oncologist for your surgery? I didn't know there WAS such a sub-specialty. This board is monitored by more than just its owners, believe me. Cancer is big business, and cancer treatment is extremely personal, very compettive, and some of us tend to be very vocal about our care and those who provide that care. That's a GOOD thing!!!! Sometimes, the only way they know is if they read it on CSN.

I have shared information, more than once, via private message, rather than posting it on the board. Not everyone wants to see a post about what happens at the end. It was one of the first things I asked my doctor, though. That doesn't make me negative - just different, yet I have been accused of "negativity" by more than one member. It has never been my intention to burst anyone's bubble. Leesa often refers to her mind-set as "Pollyanna-ish". I respect that. I LOVE Leesa. But I also know that she wants/needs more than just a cheerleader. Like me, Leesa is optimistically realistic. We hope for the best, but we KNOW the nature of the beast, and we don't trust it. If the board postings get too heavy for us, we back off reading them for awhile. What we DON'T expect is for everyone else to tone down what they post, for the sake of our delicate feelings. And I hope all of you are of a similar mind, because I post what I feel. I post what is going on with me. Otherwise, why post at all?

Carlene
Sorry for the long rant....

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

Bring it on ! When I first joined this board I scoured the posts for details on what happens at the end of our journey, Carlene messaged me privately on the subject which helped me alot. My Dr was rather grim so I will always be happy to hear the happy stories but the ones that helped me the most are the ones where you are dealing with the side effects, the tests, all the things we all face.
We are sisters and we should share everything;a burden shared is always lighter. I sound like a fortune cookie !Lol Where else can you share that I've been having almost normal bowel movements for the first time in a year and I know that you all understand.
Maybe too at the end it is too much effort to be on the computer and I plan on having my daughters keep you in the loop, but don't expect to hear from them any time soon. It won't just be to let you know I have died either . I hope it will help someone just starting down this road to know what is happening in the last weeks, days and hours of this disease.
We need the good news also ,each time a treatment works for someone it is hope for all of us even if not personally but for our daughters and grandaughters
Love to you all and thank-you for sharing all that you have with me. It is a gift that I treasure.

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

All of my news (except for the dx, of course) has been good, so far, and the bad news really freaks me out - BUT, I need to hear it. Before I found this board, I had my head in the clouds. I was beginning to suspect that all was not so peachy as I had thought, and I was purposely sheltering myself while in chemo, because I desperately needed to stay strong to get through it. After chemo, I experienced the let down that I now know many of us go through. No longer doing anything, but waiting for the other shoe to drop. No matter how rosy the prognosis, that other shoe is out there waiting. Hearing about how strong and, really, courageous, so many of you are, has helped me believe that I could cope also, if necessary. Hearing the stories, both bad and good, helps me prepare for whatever may be in store for me. I have always had to have a plan in place for whatever alternatives I could imagine (I'm good at imagining bad ones...LOL.) Now, with your help, I am actively developing plans, and that helps quell my anxiety. So, whatever is posted here, in my opinion, is all good!

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

I have nowhere else to go...my mother is soon going to be getting her wings...I just can't talk to others about this...it is so private and personal...I do PM people when I want real specifics, but egads.....in the next 6 months I am going to need people here more than ever...I admired Bonnie and Saundra and Dorion and Tiffany so much for the posts and experiences...they have helped me prepare....this is a cancer board...people die from cancer...people die from ovarian cancer....if we can't talk about that reality here, then we are denying ourselves support and encouragement at one of the most important crossroads of life...bring on any news you want...we each have a choice to respond or not respond....to read or pass over...

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Please no one should feel like they shouldn't share their bad news. It is real ! We live in such a cotton wool culture now a days. I agree it may scare newbies but I am so sorry to say it is the reality for most women with OC / PPC.
I am so glad to have read all the experiences of the different women on here, the good news gives me hope and the bad prepares us for what we might face in our journey ( or our mums) it has certainly prepared me for the set backs we have had, I am so much stronger now than 6 months ago.
Thank you for all your experiences , the good, the bad, the ugly!!!!!

Xx Liz.

kikz's picture
kikz
Posts: 1269
Joined: Jun 2010

I cried like a baby. I have so many wonderful people in my life who are there for me whenever I need them, but not one of them has ovarian cancer. The sisterhood I have experienced here is immeasurable. Bad news, I can relate to; good news I can relate to; humor at one's own expense I can relate to. Please continue to post whatever is going on in your life. We are all either going through, have gone through or will go through the same highs and lows of this rotten (not the word I really have in mind but I don't want to get kicked off) disease. Plus there are some very bright women on this board who do the research. And when I say bright, I mean it. I have had to ask for clarification. I have learned so much. When Carlene talks about needing a gyn/onc surgeon, thank God my health provider knew about this, I didn't. I admit I have shied away from the board at times because the posts were sad but I always come back. So bottom line, tell it like it is. We can take it.

Karen

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

I am fairly new to this board and in my opinion this is no place to sugar coat the
things that bring us here in the first place. I want to know what lies ahead and also want to hear the good news stories that bring us hope and a smile. I have great friends and family but no one has a real understanding what you go through or will have to go through.
I so appreciate being able to come in and read the posts. It has been invaluable to me.

rubyslippers
Posts: 53
Joined: Jul 2010

My views on these are that you should be allowed to say anything you want to say good or bad, this site is for friends, and friends that you will make while going through the worse time of your life. If you have a friend knock at the door and they see you are not happy they are not going to run away, friends support you, listen to you and yes give you that shoulder to cry on and friends also make you feel better and make you laugh. Lets be honest, when you log on to a cancer site you do not expect it to be a bed of roses. You need to know the realities of world and not just what the doctors want you to know, you want to know life experiences from other people that are suffering like you, and you just do not want to feel alone. I believe you should be allowed to say what you want. The first person I met on here was Hissy , I read her threads and I will always be praying she is well. She was there when I needed her regarding my mum and I do class her as a friend. We do make friends here

Kris xxxxxx

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Kris...your post touched me deeply. Thank you for your kind words. I try very hard to help whenever I can. I feel like it gives this rotten journey some higher purpose, something beyond just testing my faith and teaching me and mine about the oh-so-frail human experience that we call life.

Like you, I found myself getting very close to some of the people here. So close that it can (and has) break my heart when they get bad news. The daughters here are a window into my own children's thoughts. I know they don't tell me everything they feel and think. And that's another reason I need you guys.

Even my real life support group pales by comparison. It's just not as personal and close.

Carlene

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

I don't want to censor any true feelings expressed on this board. Sometimes I skip the "bad" news if I'm feeling especially vulnerable that day. But I sure would want to have a place to "lay it all down" if/when my own scary news comes around. No one, however loving, understands cancer like the folks on this board. Feel free to ignore any posts you think you cannot handle. When you post, try to use a subject header that gives a clue about what you're posting.
Whew, this was sure a hot topic. So many responses.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Geez... I know it is hard but ..I want to hear anything that all of you have to say. Sometimes when there is bad news, someone can help. Because maybe it isn't as bad as it seems and one of the "teal sisters" just might have the answer.

Good, bad or ugly.... I think that is what this board is all about. It is also hard when everyone starts putting up good news and in your heart you know that you are not doing too good. But you are happy for them.

Then as "Nancy" said, she doesn't like to put the bad news on because she doesn't like to bring everyone down. I do that too sometimes. But this is what we as a group are all about.

I have learned so much from all of you. And just to know that I am not going through this journey alone helps me. Please please continue to express your feelings and what you experience. It might be tough....but I for one want to know.

Teal Sisters are Tough
Thanks to all of you...We are in this together.

Linda

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

I support Patty's idea of making a clear subject heading when there is "bad news" so that someone (newbie or not) can choose NOT to read a post if they feel like they need to be spared something painful for whatever reason.

I find it so interesting that there are more postings from the "realists" on the board regarding this subject than from those who support the idea of letting people stay in denial a little longer about how truly devastating it is to be diagnosed with ovarian cancer.

It's said that there are two kinds of people out there: optimists and realists....hahahaha! I'm the optimist married to a realist--if both of us were optimists, we'd be completely insufferable and have no friends at all!

So it is no surprise that I'm in favor of breaking the bad news to someone gently--I guess that's my idea of the Golden Rule (although that Golden Rule idea is all relative anyway).

Ultimately, I appreciate it when someone comes back on the board to say ANYTHING after they have posted "bad news" or that they were having a hard time--at least you know they are still ALIVE! I've read too many of the old posts on this discussion board that sounded so desperate and then...nothing! It's like reading a book and then someone tore out the last chapter.

My mother always said "Many hands make a burden light." Which is to say that when someone shares their burden or their suffering with us, we hope they may feel a bit less burdened. And rather than bringing us down, the sharing allows us to feel less alone in carrying our own burden or enduring our own suffering because we know others who understand what we are going through.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I added a lot of personal info to my profile so you girls can track me down if I go missing. Not everyone is comfortable doing that but truthfully, if you have any kind of presence on the Internet, you are not anonymous. My phone number is in the book... I don't see much difference. Look me up, track me down, I don't care. If I know your name I can find your date and place of birth and where you live (Ancestry.com) and your drivers license number criminal and civil court records and more . Everything in life is a trade-off.

Carlene

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I added a lot of personal info to my profile so you girls can track me down if I go missing. Not everyone is comfortable doing that but truthfully, if you have any kind of presence on the Internet, you are not anonymous. My phone number is in the book... I don't see much difference. Look me up, track me down, I don't care. If I know your name I can find your date and place of birth and where you live (Ancestry.com) and your drivers license number criminal and civil court records and more . Everything in life is a trade-off.

Carlene

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

This is all I should have said:

Ultimately, I appreciate it when someone comes back on the board to say ANYTHING after they have posted "bad news" or that they were having a hard time--at least you know they are still ALIVE! I've read too many of the old posts on this discussion board that sounded so desperate and then...nothing! It's like reading a book and then someone tore out the last chapter.

My mother always said "Many hands make a burden light." Which is to say that when someone shares their burden or their suffering with us, we hope they may feel a bit less burdened. And rather than bringing us down, the sharing allows us to feel less alone in carrying our own burden or enduring our own suffering because we know others who understand what we are going through.

MK_4Dani
Posts: 318
Joined: Sep 2009

When I was in treatment this board helped me with encouragement and great advice and made the whole experience a little less scary. The first death from this monster (Linda) from someone who made me laugh, cry, worry about her daughter was indeed heart wrentching. That in and of itself was a learning experience on the reality of my (and all of ours) situation. As each of my cyber sisters have obtained their angel wings I grieve and it also reminds me of my luck to still be here to fight another day and to enjoy every moment with my family. I am coming on a year NED and I look at this board EVERY evening: hoping to pass on my experiences, my encouragement, my prayers, etc...I want to give back some way to the cyber sisters who helped me and have gone before me. Whether it be bad news or good news I like to be connected. The good news give those newly dx hope, the bad news gives me the empathy and resolve to continue our journey. Honestly, some posts I shake my head and think, "WOW, I had it pretty easy!" This is our shared reality: the good, the bad and ugly. Yep, for me I know a recurrance is possibly around the corner but I know from the others that there are other treatments, life after recurrance....!
That may have been 3 cents worth.
Mary

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