Do you talk about losses...?

BethNY

I don't know exactly how to ask this, but I've been around the beast for 3 years.  I've seen the ups and downs.   I've watched the crap shoot of the beast, and who has to fight round two.  I've cried and felt total anger over losing friends I've made here.

In recent weeks it feels like the loss and bad news has been piling up, and my question is, do you guys tell your non-cancer support team about the losses, and sad news?

I guess it feels weird to announce out loud that one of my friends from the boards is dying, or has passed, because I don't know how I want my significant other or friend to react...but at the same time, I don't want to carry my saddness and reality of this disease by myself.

Just wanted to hear how much you guys share with family etc.

EachDay

I talk about all of it with my non-bc friends/family.  This is part of my journey, what my life is about.  Those who are closest to me are interested and know why this involves me, why this is what my world is.  And they "get" it.  Last year, this very weekend was my MIL's 90th birthday.  There was a party for her and just as I was to leave to go to that I learned about a woman I knew who had passed away from her cancer.  I was late to the party because I needed to have some time to absorb this, grieve it and assimilate it.  And everyone understood because it is the "what if" if our lives.  So I just do it, and if others don't get it, or react like there is something wrong with me, too bad.  It's part of what my life is now as a part of the breast cancer society.

Excellent question by the way.

Paulette531

I talk about it with family/friends. My grandaughter even asks about certain people and how they are doing. At times when she was visiting me she saw me on the board and even read some of the posts. She was heart broken when she heard about Shelli. A lot of the people from around the time I joined (2003) have been in my thoughts and prayers for nearly 4 years and are almost as dear to me as family and in some ways more dear. So, yes I talk about them.

connierc1

Hey Beth,

When I tell (have told) my hubby or my mother about folks whom I've gotten to know via chat who have had a recurrence, is having surgery, has died, they tell me NOT to keep going online, as it only is a "negative" thing, since "people you sort-of know" are sick or dying. I know they don't want ME to be upset, but I don't think it makes THEM worry about ME getting sick -- other than emotionally.

My two cents.  Blessed Be to RAVEN & SKYBABY...

luv ya,

connierc (boston)

Anonymous

Interesting question.  I don't usually tell anyone in my real world.  DH would say, stop going there your getting too depressed.  Family and friends dont really understand why I come to these boards everyday.  The friendships I have made. 

Each time we lose a sister, my heart aches - but I know we can come here and support each other.  In the last few years, we have lost many.  Makes me shake my head - as even though  they are coming up with newer and better treatements, we are still losing so many.

Nicki

Member_of_the_Club

I spend a fair amount of time communicating with women in my community going through treatment (I'm not trained like you, Beth, more of an informal thing) and I try to remain upbeat for them. This has been a hard week -- a Congresswoman from nearby died yesterday from bc and there has been so much bad news on the boards. Plus I am in the process of having several biopsies so I am back in bc world mentally. And I also don't want the people closest to me to think the boards bring me down.



I have a group of on-line friends who have children with the same form of autism as my son and, interestingly, that is where I feel comfortable unloading about what is happening here. These women understand the power of an on-line community but they are removed enough that I don't have to put on a positive show.

Jaybird627

I compartmentalize my life so, no, I don't 'share' any BC stuff with anyone outside of my BC 'world', just as I don't really share much about my daugher with those who aren't in a similar situation. As general conversation I might make comments but as for in-depth details I don't. That's just how I've always been.

Anonymous

I'm with Jaybird and Nicki....I share only with those I know will care and understand. Otherwise, I'll just get pissed off when someone asks why I would care about someone I 'don't really know' or told to stay off the boards if they 'make me depressed.' Most people just don't get it, ya know?

~Marin

BethNY

I'm struggling, b/c I'll be hanging around the house- and maybe a friend or two is over, and I'll happen to get on the boards, and read some bad news.  Over the last few years I've announced stuff out loud.  But now, it just doesn't feel right.

When Shelli was going home to die with her family around her, I wept, and openly shared it with my non cancer team, b/c I've talked about her for 2 years.

With two chat friends with new mets, and another that is going home to die, I'm having a hard time right now.  I want to tell my BF, but I also don't know how I'm supposed to feel about it.  Why do I feel like I need to tell him?  Does my non cancer team even understand?

Just feeling confused.

Anonymous

I started out having just a wonderful day, went for a walk and was reading the Sunday paper.  I read the headline Congresswoman Jo An Davis dies from breast cancer.  She was diagnosed the same year and age as me.  So this struck home.

I happened to mention it to my DH and his response was well your not her.  Thats the main reason I dont discuss it with my non bc friends.  They all think Im fine and this journey is over. 

My highest hope is that as time goes on, they will continue to find better treatments and hopefully soon a cure.

Nicki

Kasey

I tell my husband about some of the things I learn on these boards.  Such as how the chemo I'm doing is working for others and experiences others have had with procedures that pertain to me.  I talked about Shelli with him before she was so sick, mostly because she and I went to the same cancer center and I had corresponded with her.  I told him about her death, I couldn't have hid that from him because I was so sad.  He knows I come to the boards, you are all my support group and he's fine with it. 

Hugs,

Kasey

gsg

Hi, Beth.

I, too, tell people when we lose someone here and I've tried to analyze why I do...because, really, why should I tell them.  Well,  I think, subconsciously, I want them to know that breast cancer is still something I deal with every day.  I look and act fine...but thoughts are still there lurking, I haven't "gotten over it," there is no cure, and no matter how much moving forward I do, breast cancer has left scars on more than my left breast.  I don't know that I'll ever feel out of the woods.

But instead of telling them that...I tell them when this horrible beast has come for another of our sisters...who did everything I did....and more...to fight for their lives.

So far that's the best I can come up with as far as my own novice psychoanalysis.  Not sure if it rings true for you.

Take care-

Patrice

Isabella4

I hear you, and I just don't really mention what I do on my pc.

My doctors, right from the start said 'don't go online'.

My bc nurse, who I don't see too much now, constantly told me not to immerse myself in online groups, she poo poo's anything I mentioned I had discovered....things I should have been told by my own hospital, but who just don't think it appropriate to find out things they aren't telling me for myself.

My DH knows when I am online, obviously, but if I mention anything about whats going on, because it is very important to me, he just changes the subject, so now I keep my trap shut !!

This group means a lot to me, I have learned so much about bc, from girls who are all in the same boat as me, so when someone is really ill, and like Shelli recently, I am on and off line constantly worrying and thinking of them. I keep the grief of the losses to myself though.

Isabella.

Anonymous

Interesting question and interesting responses.  Also, interesting how people react when told about "news."

I shared Shelli's pic that Geeta posted to my middle daughter.  Shelli was a year older than my oldest.  My middle daughter has two children.  Her response was she was crying for Shelli's family too.

One friend in particular will advise me to stay away.  I tell her that I don't think negatively everyday or worry everyday that mets will hit me.  I tell her that there are "good" stories here too.  We learn a lot from each other. However, she thinks I just take the negative.

I also share with another friend and my daughters.  I don't go into much detail. 

I don't know why I tell them.  I just want people to know that this disease is a KILLER.  I don't want my family and friends to worry about ME.  And I'm afraid that no matter how much we scream about this noncurable disease most people are not going to understand until they are touched by it.

I just ran into a friend at the grocery store who I haven't see in years.  I found out that two "kids" who are my daughtger's ages and when to school with them has breast cancer.  It broke my heart.  I also found out that one of the "mom's" (she took care of her and her brother after their dad killed their mom..she's an aunt to them) also was just dxd with colon cancer.

I hate this disease in all forms!

I share some.  And then there's some things I don't share because I believe people get tired of hearing about it. 

Shirley

JoanofArdmore

Hi BethNY.Who IS my non-cancer support team?You mean my friends and family, right?

No, I dont really share.I compartmentalize, like Janice.Because my daughters do NOT want me here.The chemo nurse daughter haaates me reading here.She actualy reported it to my onc (they are collegues).HE said "Good! Nothing wrong with getting information."(Nothing about grieving for cyberfriends.I KNOW this isnt what most teams, medical and non, want for us.)

I'm a very suggestable person, so I dont go all around the boards.Still, I know enough about our losses to cry a lot.

My other daughter isnt so "bossy" But she says she's not happy about "my cells" taking all this in.She'd rather I go on with my life.She wants the old, brash me to come back.

Some of my girlfriends share these things with me.Some have had their own cancers, some have had their husbands have cancer.

Nothing, though, is like sharing with other sisters right here.

I dont have a husband or a BF.But the husbands I've had...I cant imagine them being anything but angry that I'm coming here and "getting upset".

So, in summation, I guess I dont talk a lot about our losses to my non-medical support team.It is scarey, but "ya hadda be there" to really understand.We have such deep medical knowledge built into our survivorships that not a lot of people off the boards get the true understanding.

Joan

geebung

Isabella, I couldn't agree more. It's a pity breast centres and anyone who treats women for bc, can't give out a list of reputable sources - books and online sites that give correct information and support. After all, I think that most people want to know more about the disease if they have some symptoms, fears or are going through surgery and treatment - so why not give them access to quality information and great online support?

gb 

LizM

I also compartmentalize.  I don't discuss this site with my friends and family other than telling them I have an online support group.  I don't tell my hubby about what goes on here because he wants me to move on and not emerse myself so much in the breast cancer world.  I also volunteer at the hospital where I was treated as a survivor volunteer helping newly diagnosed women.  I made the decision to stay involved and I know that means I will lose friends and I am willing to accept that. 

Member_of_the_Club

I think Shelli's death hit us all particularly hard. She was pretty amazing. It really is a testament to her life that her death struck us all with such force.



And some of our greatest stormtroopers -- Shepgirl and Kimmytoo -- have had progression and it just really, really sucks.

Anonymous

Also, we lost another sister to this disease.  I somehow ran across the announcement.  Her name was "pixiedust."  Her dh posted.  She died from complications from pneumonia.  She was young (34), beautiful and has two young boys.  Her dh husband has a couple of You Tube videos of her..her first treatment and one where her hair began falling out. If you haven't read it here is the link that he posted. The first link is telling everyone that she was sick and the next link she passed away.  She was dxd June 28 of this year.  Her name was Stacey.  Her last post appears to be Sept. 12. Her Lymphocytes never came back up.  

I'm posting this because she WAS so new here and wanted others to know about her.  I've read her posts and she was such a positive, sweet young woman.  

http://community.breastcancer.org/topic/69/conversation/692481  

http://community.breastcancer.org/topic/69/conversation/693325

Jaybird627

(((Beth)))

I'm sorry you're having such a hard time! I guess you just have to get through it the best way you know how to, and only you know how that is. Talk, or don't - we're here for you is you need us.....

Hugs

CindyZY

I just returned from a wonderful cancer wellness retreat in N.C. that Marin originally posted about. It was a wonderful experience, the women who ran it is a bc survivor who started this non profit. This was their first retreat. Eight of us stayed for the weekend. Most were BC, a couple of ovarian, endometrial. It was one of the most incredible experiences of my life. The group just "got it" we were all on the same page...it was an amazing time of sharing, caring, laugher, tears, anger at the beast. I look at the group picture and I wonder who will be around for a future reunion. I have never in my life looked at another picture and wondered that...do you know what I mean? It makes me so sad and so angry at the same time.  We are losing too many young amazing women to all kinds of cancer.

Cindy  

iodine

What a great question!

I don't share information about the boards with may family or friends.  In fact, when dh asks what I'm reading, I usually lie.  Often I'll tell him the boards tho and occasionally I'll tell him something funny from here, but never anything serious.  I can mention it to my daughter without any judgement, but don't usually don't have a lot to say to her about it.

About a year after dx he was furious that I stayed on the boards and I sneaked around and was on at night or when he wasn't at home (can you believe this!)

I finally realized that was silly and told him this place was good for me and I was good for the boards and I was staying. 

I've found that my best friend looks at me funny when I mention anything I've read here, almost jealous, so I don't mention any more. 

I have no place to volunteer and am not much for walking or racing for the cure, so I come here and hope to be of some help now and then.  I know you are all helpful to me.  We all "get it".  Can't say that for any of my "support group", such as it is.

purplemb

well.... I do share...as my DH and family found out , these women are real...at pinkstock when we were all around the fire they seemed to understand....I hope the other DH and family members saw ... we care and understand like no one else.... I don't really "care" what people think of me, so I do grieve and smile when happy things  are shared....(lol...have a friend my Dh remembers from 2 yrs ago as heating pad lady...lol..) its what I think of others tha tis important....so you are my family and I do tell. and share...just like when BethNY was in the Magazines last year...... my support family has even recommended this site to others ...cuz...I have been able to "move on" but keep in touch...

hugs MB

connierc1

DEAR BETH,

I told my DH about your question, tho it took him a while to even UNDERSTAND the question, and HIS reaction was that whenever I am in the chat room and hear about "people who aren't really even my friends" (asshole DH!), he doesn't like me to know because it makes me upset.  Oh, and sort-of on the same line, he COMPLETELY can not, will not, doesn't want to understand WHY I am "still" effected by this and why I "haven't gotten over it, it was four years ago."  Well, DH, my DX was FOUR years ago -- tx didn't "end" until about DEC. 06, and I'm STILL in physical pain every day because of the screwed-up recon and the muscles not in the correct place.  NOT a good day on Sunday, not at all...

LOVE YA, BETH -- and, yeah, it IS hard to know our "friends" are dying, even if we may not have coffee with them every day or have never actually met them.

BLESSED BE, SISTER,

Connie in Boston

livesstrong

Beth, what a great question. 

I find it hard to talk about what I have been through with some of my friends mainly because they really cannot relate.  My DH is a 7 year survivor and although he DOES know what I have been thru (he was actually worse off then me) I think he doesn't quite "get" the bond I have formed with some of the women here. I actually feel more comfortable talking with all of you about my bc then I do with him.  Go figure.

When I come here I know I will either laugh, cry, scream or sigh and I'm OK with that because I know you will all be feeling the same way too!!!

Valerie

junie

Great question and interesting responses so far!    I have so many thoughts and things to say, but bottom line is--yes, I share my cyber world with just about everyone I know.    Some friends think it is kind of strange, but they are accepting that I can talk to them about "Mary" who I've never met.....my DH thinks I spend a bit too much time here, but he is the one who holds me when I come to bed crying because someone has died.   And, he is the first to ask me if I've heard from "Jane".......he has been with me on several get-togethers where we have met some of you wonderful people face-to-face.   I have a wonderful group of non-cancer friends who all just seem to understand when I mention that a "cyber friend" is having a problem--or, sometimes a really great good thing going on!

Guess I'm lucky--I've got all of you to help me and I've got all of "them" who try their best to understand and help me......thanks to everyone!

Fitztwins

Yes I do share, mainly with my online friends. About people who I have grown close to on this board.  I always tell my husband, who gives me a blank stare. Or share with my best friend (who gave me magazines for Rosa) or my online twin mommy friends (the NYC one the most). I think it is healing for us to share.

Even though non-internet-board people have a hard time understanding the bond we build, all of our sisters here are part of our daily lives and our families.

I had a horrible time when we lost Theresa PW

and with Shelly.  Everytime we have a sister who mets or has progression my heart breaks. Some of it is for personal reasons (fear) and some of it is loss. Loss of those who have touched my life here.

Beth ~ I will see you in a month ! 

Janis