Honoring Our HER2 Lost

[KDR]

Since we keep a list of those fighting The Monster, I thought it would be humble to mention those we've lost, in remembrance, because we won't forget them, because we forge on in their memories. Does anyone have such a list...Jackie?
Karen

[tricia keegan]

Karen, in my time here there have sadly been too many losses, it was suggested before to have a rememberance page on the site with photo's etc but think Christine was against this as wants anyone coming here to have a message of hope rather than the alternative.

[sarah]

Yes, Tricia's correct, it was suggested before but rejected. I think it would have been nice. Maybe only available to senior members? I don't know. I respect Christine's decisions, it's her site and so important to us. She and the others who help with it (Becky, Stephanie and others) are angels helping and protecting us. What would we do without it???

[KDR]

In light of BC Awareness Month, we mark this time to remember with love the people before us, the people ahead of us, and the promise to fight on. I think it's a beautiful idea. After all, we call them angels, and they are. It is part of life, so I put it out there.
Karen

[PinkGirl]

There is a place on this site that lists the names of our
deceased angels ... but no one can ever find it.

[StephN]

Here is a link to the page where our dear departed sisters and brothers are listed, it is called View Forum Leaders:

http://her2support.org/vbulletin/showgroups.php?

Hope that will work.
Scroll down a little for the list.

[Sheila]

Steph...it seems as though there are missing names...Darlene Denise this year...
who updates it?

[PinkGirl]

If I didn't have that link, where would I find "view forum leaders?"

[Lori R]

I can appreciate that for some, such a thread would be disturbing.

But for me...I thought about Lolly and others just yesterday and wanted to go out and post that I still am thinking of them and still appreciate the support they provided.

Just saying I wanted to wing a special prayer their direction. But then, I am sure they heard it. Thanks again all you angels who watch over us.

With Love....Lori

[Joanna J]

karen,I like your idea to remember those precious & dearly departed,I feel that they are all looking down & watching over us
Cheering us on! Joanna

[Bill]

I think it is nice to have this link to go to if you want to, without it glaring like a beacon as soon as you log onto the site. Just my opinion. Like Sheila said, though, it does seem like a few names may be missing.

[ElaineM]

I like the way things are now. We can go to the link to read about our special angels. We can also remember them in our thoughts and hearts.

[Trish]

Thanks for raising this issue, Karen. I am glad there is a list. I think hope and honest aknowledgment of the toll can co-exist. Without clear eyed recognition of the facts, hope, while entirely justifiable, lacks credibility.
Trish

[StephN]

Joe was the one with access to that part of the site and added any new names. Thus, I am pretty sure no one has been listed who passed after Joe did. Guess that is another bit that we either pass to Tom, the webmaster, or someone gets access to that page to add new names.

[sarah]

Thanks Stephanie. So many of the people who are now angels were so important to so many of us. It's nice to know that now we can revisit them and remember them fondly for their courage and inspiration and advice.
love sarah

[PinkGirl]

Never mind StephN ... I found it. It's at the bottom of the
list of Group Forums.

[StephN]

Sorry, Pink - did not mean to ignore your question.
I had just come in from a 4-hour drive and probably should have just gone to bed!

[StephN]

What names are missing, besides Darlene Denise?

Let's start a list so they may be added.

Please chime in.

[Bill]

VAmoonrise. I didn't see her on the list. Maybe I looked in the wrong place.

[Trish]

Jackie Handley passed away last year. I think her posting name was J. Handley but I can't remember it exactly.
Trish

[StephN]

Bill, right you are. I can't recall exactly when that list was finally posted (after quite some discussion), but I see some other names missing from your dear Nicola's time.

Someone DID add Joe! Maybe it was the webmaster or Joe himself? Will check and see how to add some new names.

[Becky]

Besides who has been mentioned:

Vicki
Al from Canada's Linda
Tom's mother
Believe51 - Mighty Oak

[KDR]

JudyF, not sure if she was a registered member or visitor, passed this year after severe complications of surrounding brain tissue and radiation. She did tell me she visited the site often. I don't think she was an avid poster.
Also, Joanna J--your neice, Tabitha, too? Her story moved me like no other.
Hope all are well today,
Karen

[Soccermom]

I'd like to add Nancy Wehrell to our Her2 lost. She posted once here as Nancy W.
Rest in peace, Nancy

[StephN]

PattyZ is also missing. She was our first brain mets guru!

[Joan M]

Karen,

Thanks for this thought about not forgetting the women who contributed to this website who are now HER2 angels. We fight this terrible disease in their memory.

Joan

[Bill]

Thanks, Steph, I thought of Patty today. And also, "Goops", I feel bad for not remembering her real name, but she did post here now and then.

[Jackie07]

I'm not sure a list (though I myself am a 'list' fanatic :) of lost members would be a good idea. The list could have a strong 'adverse' psychological impact on our new (or even existing) members. I personally would not want to experience that sort of emotion whenever I log on.

My own preference would be for our members to feel free to honor the lost sisters on their 'anniversary' or whenever something reminds them about a particular 'passed' member.

For those who are really interested in having a list, please click on "Members list" on top of the Board and just look at the last log-on dates. Most of the ones who have quit posting are alive and well. To find out if the person has passed, look up his/her last posting and then put the member's name in the 'Search' box to see if there's discussion of her/his passing.

Then again, there could be some that have earned their wings, but their passings have never been known to the Board.

Just my two cents.

[KDR]

Dear Jackie,
Thanks for your opinion. You say, "I personally would not want to experience that sort of emotion whenever I log on." I respect that, but I also think there should be a site location where we CAN go to visit should we miss someone, want to find out their status, etc. Then you say, "To find out if the person has passed, look up his/her last posting and then put the member's name in the 'Search' box to see if there's discussion of her/his passing." I don't know how accurate this could be, supposition at best.

Personally, I feel a loving connection toward my fellow fighters. We even refer to each other as HER2 Family. Passings don't always involve HER2 breast cancer, either. I don't think our lost members should just float away and never be "heard" from again and I don't think those of us who monitor each other's well-being here should be left in the dark.
Respectfully,
Karen

[ElaineM]

Personally I think the link Steph posted earlier is the right way to honor our "angels".
It is there for those who wish to visit the list departed members and does not get in the way of those who do not wish to visit the list of departed members.
All we have to do it is write down or bookmark the link somewhere we can find it easily or just follow Steph's directions to find it.
That way if we want to read about one of our "angels" we can go to that link and read. We can also remember those "angels" we were especially close to in our hearts or do something special and personal to remember them on their birthdays etc. I don't need to have the people I was close to and who passed away listed anywhere. I remember them and honor them in my own way.
I think the main purpose of this site is to offer support to those who have breast cancer and their families and friends. People can share their concerns, share their joys, give support and get valueable information about how to live with breast cancer.
This site works well with that mission and purpose. That purpose should remain the same for those who visit this site and in honor of Christine and Joe who started this site with that purpose in mind.
I would not log on very much if remembering those who passed away becomes a major part of this site.

[KDR]

"Personally I think the link Steph posted earlier is the right way to honor our "angels"."

I don't think anyone was asking for anything different. Just to keep it current and to let us know where it is.
Karen

[Joanna J]

My niece, Tabatha Nicole Reed was not a member,nor did she have Her2,But she passed away on April 7th,2011 w/an aggressive form of B C (I am so thankful for the support from my Her2 family,as you all gave me stength,during this difficult & trying time in my life) Thank You so much!! (esp.Karen for remembering Tabatha) Hugs To All. Joanna J.

[KDR]

You are so welcome, Joanna. Tabatha really made an impact on me, and I never met her face-to-face. May you have continue to be clear forever.
Karen

[StephN]

Becky, did you mean Vickie H, or was there a Vicki too?

Also we should remember:

HerMiracles
Clisa
HavahJ

[Becky]

And Goobs (I think)

[StephN]

Bill mentioned "Goops" (Karen)

[ElaineM]

Kathy S from Tokyo seems to be missing from the link you provided. I think she passed away in May,2010.
We used to skype occassionally and she had a blog.
I used to live in Japan several years ago and enjoyed chatting or blogging with her.

[StephN]

With addition of KathyS, we have 17 names to get added to the list of our dear departed members.

[v-ness]

VickieH is missing from the list. valerie

[Unregistered]

My twin sister died on January 2, 2011. She was diagnosed 3 years ago. She had the HER2, Stage 3, did all of the protocols, surgeries etc, then it came back after 6 months. It had spread to the liver and then to the bones. I miss her every day. She is my hero.

[Trish]

It must be so hard to lose a twin but I'm glad she is living on in your loving memories,
Trish

[StephN]

Now we need to add Gina Popp.
Thanks CathyA for following up on one of our dear sisters.

[Debbie L.]

I agree that remembering and honoring listmembers who have died is right, and important. There is so much fear for anyone with a breast cancer diagnosis and I believe that in honoring both the living and the dying, we decrease that fear and increase acceptance. If we hide or make secret that which we fear, the fear doesn't go away -- it festers. In my opinion.

The way it is now, with just a list of names, and that list in an obscure place, seems odd to me. Kind of cold, and not properly honoring the lives these women and men led, and the connections they made with us.

So -- my preference would be a separate forum (on the main page, where we have all the different sub-forums) and each thread would be the name of the person who died. When they die, we could post our immediate tributes and thoughts there under their name, and over time, as they are in our thoughts -- we could add things if we wanted. No one would have to go there, or even notice the forum's existence, if it bothers them. But those of us who find comfort in the remembering would have a place to do that together, with each others' support.

Debbie Laxague

PS: Thinking about it a little more -- although each person's thread would be very personal in the remembrances and such, it might be better not to put there any medical details of their life with cancer. That would prevent newbies in morbid moods from that obsessive looking for others "just like them", to see how they fared.

[norkdo]

KDR and others: thank you so much for this. I believe the supermoderators etc should really listen to our need for a full comprehensive list. Newbies we all once were, but the only way out of that initial terror and paralysis is "through"....not "around" the truth. We log on here at every stage for exactly the same thing....the sisterhood, the love, but most of all, the truth. We get enough false positivism from folks in our lives who don't have BC but who are scared to lose us.

During the Iraq war the president of the US forbid television footage of caskets coming off military jets. In Canada, however, we photographed, published, and televised every single one. This is a similar difference here. I would hate to feel military families' lost ones are forgotten by the whole community. Respect is not the same thing as "putting the lost one out of your mind."

Stop protecting us from knowledge!! That is waaayyy condescending. I want ALL the details of these people that we have. They lived! They had details! They are not just names. I find that holding a prayer/meditation session with a list which INCLUDES their medical and other details, in front of me of all those whose lives were shortened by BC in all its forms gives me an intense connection to their unique beauty, the fears they must have had, and their innocent goodness in reaching out to others as they left this world....and in turn I get the pleasure of sending out prayer to their still-living souls...an intense "sending out" of respect and love to say "you, my sister....whom I never may have had the pleasure to meet....are valuable....I honour your memory. I send you my love." (just in case they didn't have too many folks of their own to do this.) This connection makes life gentler and more respectful. Reminds me to live better...for their sake.

I would hate to be forgotten by all of you.

[Mtngrl]

Nora,

I agree with you 100%.

Everybody knows you can die from this disease. Shining people on is not support.

Debbie, I also agree about the medical details. That's not really necessary once someone has died, and it might be misused by the living. Instead, maybe basic life data--birth, death, marriages, descendents, friends, partners, etc.

People who know they have run out of options might want to post some kind of farewell address for a "memorial" thread, perhaps to be uploaded by a loved one or another member of the group after they die. It's this community that "gets" what the whole thing means. We could help each other a great deal that way.

I have an in-person group here in Boston. We just found out Monday that a member had died recently. We had no idea it was coming. It's not that I expected her to find time to come say goodbye to us, but it was a shock, and I did feel a little abandoned. It's a support group. There's giving as well as getting.

One thing we can give each other is a view of what the last phase looks like. From what I've seen, it has its good points. No more struggle. No more worry. Acceptance. Peace. Closure. I'm not anxious to get there, but the ones who've gone before are still with us in spirit. We should give them a way to live on in our memories.

[StephN]

The way things are right now with this web site, we do not have an official administrator who can make any changes such as when Joe was alive. We react to major problems to keep the site clean and running as well as possible. But at this time there is no revamp in sight. Sorry, if some of you feel that this type of responsiveness is lacking (I join with you), but until Christine and Joe's daughters wish to move ahead with some substantive changes here, we must live with what we have.

So, NO one is being forgotten or purposely dropped off the cancer map. This is the way Joe left the site. God rest his soul.

[Jackie07]

I've just found out that my social security number and all other personal information have been compromised and someone had filed my income tax return for the 2011 year. When I called the IRS last year after encountering problems doing on-line filing, the agent who took my call evidently had thought I was the bad guy and brushed me off. Finally I got it clarified a couple of days ago and now I have to do all sorts of paper work to get myself 'moved' from 'Maryland' and become a 'married couple' again!

Just imagine if I'd used my 'real' name on my Facebook and other online forums! The information was 'phished' from me at home because I'd thought the caller was from a legitimate source that I'd just contacted that day. My computer was also compromised one time because the 'technician' had installed a virus - I realized it when the 'phisher' called right after that mechanism 'flashed' on my computer. There goes my 'innocence' ...

So please be very careful as to putting personal information in an open forum. We've got visitors who do not fit the Her2 profile and there's no way to find out who they really are!

[Mtngrl]

Steph,

Thanks for explaining the situation.

Jackie,

Thanks for the warning.

[norkdo]

Thanks so much Amy and Steph!!! That clears a lot up!! And yes, Amy, and Debbie I concede on medical info as per the info from Jackie07.

[mamacze]

KrisVell - my friend that I met on this site then was astonished to learn we lived just 1 mile apart. We became good friends. Our daughters were friends. I just hated to see her go. Here is a shout out to you sweet angel - I know you are watching out over us XOXO

[Jen]

Sheila needs to be added to the deceased list also.

[IrvineFriend]

I'm new, not at stage IV and think it's appropriate to honor those that have died from this. Not a downer, just reality. Your community is what kept me coming back every single day and community honors those that have passed.