How do you feel about a Memorial/Tribute Forum?

[Becky]

Dear Members

With the recent passing of our dear Brenda, the subject of a Memorial/Tribute page has come up. Generally, our founders, Joe and Christine, were against the idea. However, if there is a strong concensus FOR such a place on this site, I can address this. It does not mean that if the majority wants this that it will happen as the views of the Druther family should be respected. However, I think that it should be made aware of what the vast majority of the board wants. Your vote is highly confidential. And I want a vote because the majority may really not want it as we tend to hear more from those who do versus those that don't.

Let your opinion be heard.

[StephN]

Becky - thanks for taking the bull by the horns.

If we do have an affirmative vote, there is the question on where it goes, and how readily apparent it might be.

Debra (Joe's daughter) may make the final such decision.

Don't mind me - I tend to think ahead of the game.

[KDR]

It's a great way to remember the ones we loved. Period.
Karen

[Patb]

Its also a good way to remember who they were
because as the years go by, I might remember some
of them but not all that were dear to me. For example,
green shoes but can't place the name. This dates me.
patb

[StephN]

"Green shoes" was Sandy Henry from Maine.

What a lovely woman who cared so deeply.

[sarah]

I would like to see one, I think often of the wonderful, courageous and inspiring people who are no longer here. Madubois' great reports on her journey for example and so many others. Remembering is nice, it gives them a new life. However I respect the opinions of others.
health and happiness
sarah

[Jackie07]

I really don't think it's a good idea for an on-line breast cancer support group like ours to have a 'Forum' dedicated to paying tribute to the ones who have left us.

This whole website is a tribute to all Her2 breast cancer fighters. Information about/by those who are gone can be retrieved by using the 'Search' button and/or the Members List.

Anyone wants to pay tribute to anyone else can just start a thread or make a donation in his/her name.

I would have been scared off as a newly diagnosed if I had seen such a 'Forum' when I first registered with the 'support group'.

Seriously, it is a terrible idea.

If there are whole bunch people feeling the need for one, then I would suggest someone to start a 'Her2 breast cancer fighters tribute/memorial' site for that particular purpose. Both Google and Yahoo (plus many, many more blog sites) offer free blogging space.

[nancy dip]

I agree with Jackie--a separate forum would be better.

I also think that Joe and Christine's wishes should be respected--would that not be a fitting memorial to Joe?

[rhondalea]

Unless the agreement for the use of this site are like those of Facebook (and other sites with similarly invasive terms of use), I expect there will be copyright and permissions issues that prevent the use of a separate website for the purpose.

[NEDenise]

Hi all,
I find myself on the fence here. While I love the idea of remembering the friends we love...

I share the concern that a forum devoted entirely to all those who have lost their valiant fight, might scare people away from our community - and it would not necessarily be restricted to newcomers.
In effect, that would rob them of all the support they would normally find here, and in many cases need desperately. (I know I do!)

This is a quote that Lori R posted on the other thread about a memorial...

"If I recall, Joe was concerned that if the
memorial included treatment history there
would be a chance that a new comer would
review and try to relate to a personal
prognosis. (I could see myself doing that)"

I couldn't have expressed my own thoughts better myself. I would totally have done that as a newbie. Honestly, I might be tempted even now. And as we all know, that is NEVER a good idea. Every breast cancer is unique, just like every survivor is.

Is there a way around this sticking point?

Could their treatment histories be removed, so just the loving tributes and memorable posts remain?
Or, would that removal be objectionable to those of us in favor of the memorial forum?

Again, I find myself in the position of seeing the valid points presented on both sides of the discussion. If nothing else, this is an excellent way for each of us to focus on, and give our thoughts about this whole issue. Thanks Becky!

Denise

[Jackie07]

There are many other websites devoted to Her2 breast cancer patients (usually imbedded within a broader topic or institution). As long as the name of 'Her2support' is not included in the title, I don't see how there could possibly be any conflict with this support group.

Before my Father passed away, family members and friends corresponded via e-mail and Facebook. After he had left us, my Oldest Brother created a Google page and we posted his life story there.

I used my Father's picture as my FB profile for a while until one of my nieces complained about it (a few of her friends asked questions...) Surely I could continue using that picture, but if it bothers just one of my family members (however immature she and her friends may be), I figured it's not something I need to insist on doing.

[rhondalea]

If you were responding to what I wrote, Jackie, I need to clarify. It's not a copyright/permissions issue with this site, but with the individual posters whose permission would be required to copy their posts to the memorial site. The reference to FB...well, FB has set itself up to do pretty much anything it likes with the data it receives from users, which is how people find their words and work being used for advertising purposes in strange places. (Consider the guy who found a photo from his wife's wall being used on a dating site.) Unfortunately (for this purpose), the terms of use here are not so broad. There's an obvious intent to protect the privacy of the posters here, so we have not all agreed at the outset to have our posts and information used for other purposes.

Anyway, if part of the desire is to preserve the posts of the absent, it cannot be done without permission from the next of kin (actually, I suppose it would need to be the executor or administrator of the estate). Off the top of my head, the best that could be managed would be links to individual posts on this site (vs. copying entire posts from this site to the new site).

I haven't thought this through, because my brain isn't working very well right now. There may well be a simple solution, but I don't know what it is.

[CoolBreeze]

Is this board affiliated with genentech? If so, I could see why they wouldn't want to highlight a memorial section. However, I see no harm in it and don't need a secret vote, I think it's a nice idea.

[StephN]

Hi Cool breeze, Rhonda and all -

Here is a link to the Terms of Service of this site:
http://her2support.org/about-us/disclaimers-terms-of-use

I would not say this site is "affiliated" with Genentech in any way other then promoting their HER2 drugs within this site. Genentech has donated funds from time to time to support the site.

But the site stands on its own, with other drug companies and individuals donating as they see fit.

Her2support.org is a non profit created by Joe and Christine Druther.

[Jackie07]

Not sure where the "with the individual posters whose permission would be required to copy their posts to the memorial site" came from. Why would anyone want to copy their [old - I presume] Her2support posts to a separate memorial site?

However, it is a good reminder to all about the copyright and privacy issues.

The discussion makes me feel even more grateful to Joe and his family for giving us this wonderful, safe venue to exchange ideas and support one another.

[Jackie07]

Just had another concern - it just doesn't feel right if we are going to pay tribute to only a selected few of our past members. Maybe we can ask the Webmaster to set up a function of the 'memorial' dates similar to the birthday reminder? [and make it a 'choice' function - only the ones who choose to see will see it?] That way we can always start a thread (or use a designated thread) to remember our past members on their special day?

ps. Looks like we've been having similar discussions before. Wondered if we going to have similar discussions every October? http://her2support.org/vbulletin/showthread.php?t=51828&highlight=view+forum+leaders&page=2

[ElaineM]

Philosophy

"Through a team effort, this unique support group seeks to promote education by maximizing the utilization of available resources. We promise to assist members by supporting their concerns and providing links to news and current research".
Christine H. Druther - MSPH
-Founder
[/URL]
(http://her2support.org/vbulletin)
[URL="http://her2support.org/community"]

[rhondalea]

Not sure where the "with the individual posters whose permission would be required to copy their posts to the memorial site" came from.

http://her2support.org/vbulletin/showthread.php?t=56163

[rhondalea]

Here is a link to the Terms of Service of this site:
http://her2support.org/about-us/disc...s-terms-of-use

Oh yeah, Steph, I read it the other night before I posted in this thread.

That was when I discovered--much to my mortification--that I should have read it before I posted the geographical survey. I still haven't quite figured out what to do about my error, but I won't do it again without asking permission (if I can figure out who to ask).

[CoolBreeze]

I think this is one of those things that is going to be impossible to manage. Who is going to do it, ultimately responsible? How are you going to know for sure who dies? What are you going to post about them? You can't just move all their threads there, that would be strange and break up the flow of the forum. So, you would have to post obituary type things - who is going to write it?

I think that it might be a lot of work but maybe my vision is not what others are thinking.

[v-ness]

i think it is a good idea to have a memorial section. it could be located down at the bottom far from the Newcomer's Section and the Her2 group, Caregiver's Corner, etc. not easily found, not the first thing seen. my personal take is that those who have died deserve it. they probably gave a lot to this site to have become well-remembered. i find that when someone dies, people naturally respond with sadness and shock, but wouldn't it be lovely if there were a place where people could write their own eulogies and pay homage to that person's life. it wouldn't have to be about what kind of cancer, how big a tumor, what kind of treatment. it could focus on what we learned from knowing that person a little or a lot, the impact they had upon us, the positive attitude they may have had, the grace with with they lived. like a memorial service. in real life, we do not pretend people didn't die. they do, and they do more often with cancer.

it seems as though in a way, they drop from our ranks and are mourned on one thread about their death and then move on. a newbie perusing the site *will* find posts about who got their wings or who lost their battle if they do any kind of searches for information. they might find, as i did, someone who was really interesting and wonder where she went, like i did with julierene. the newbies are not spared the knowledge that people here die and it is reality, people die. why cloak that? if anything, as a newbie, i would have been very touched to see there is a community here that values their lost friends so much that they even do a tribute site. i would hope i could be part of that community and IF that happened to me, that i would be so well-remembered for something, anything.

many of those who have inspired me and my attitude have been some of the very people who lost their lives. you can't protect people. if that is a concern, then more people could work the Newcomer's Corner offering reassurance, guidance, help, someone to talk to. newbies have already thought about death the first minute they were diagnosed. it comes with this territory. to have someone tell them about Andi BB or christine and the many living with stage 4 and mets and the high rate of success with early diagnosis, that will balance out any memorial page, in my humble opinion. my cancer life began with a friend with triple negative BC and later brain mets. she died on my last day of chemo. because of her, i'd done frequent self exams and i attribute my early detection much to her. her loss was devastating, but i didn't leave the church thinking i would fall apart because of her death. if anything, i went forth more determined to live after listening to the loving memorials people shared.

just my nickel's worth.

valerie

do you really think the site would need permission from family to repost what the individual already posted themselves? it does not seem so, if we were not mentioning full names, just their handles here.

[rhondalea]

do you really think the site would need permission from family to repost what the individual already posted themselves? it does not seem so, if we were not mentioning full names, just their handles here.

It's a problem only if the memorial site is a separate site (vs. a separate forum on this site). It's not that I think that anyone would object, but only that copyright law is pretty clear about what you can do with someone else's words. If this site had permissions like FB's (well, the permissions FB gave itself before the courts got involved), then it wouldn't be a problem, but it doesn't, so it is.

I'm not a lawyer, but I do try (not very ably, at the moment) to keep up with this area of the law.

Just so we're clear, I'm very much in favor of a memorial forum. My experience (many dead friends from the time when I participated in a high-risk sport) tells me that it is both comforting and healing. I just think it's important that it be done properly.

[KDR]

How about their picture or Avatar, name and date of transition? That's easy. We already have it, in a way. I think for those persons who would like to see this happen, a quicklink would suffice.
Karen

[Joanne S]

I think we're making this more difficult than it really is. We already post our tributes, condolences, sympathies, thoughts, feelings and prayers whenever we learn our sister got her wings right her on the 'her2group' forum. Perhaps we could just have a "Wings" forum/section to move the posts related to those fallen by this terrible disease. Or we could just post the date of death with their signature information. Do we know who is currently responsible for managing this site? And what it entails?

[Joanne S]

KDR, ditto!

[Laurel]

Becky,

I really like the ideal of a memorial "wall" that is a sticky here where we can go and post when we lose one of our own and where we can go post a funny story or even resurrect a favorite post by one of our fallen friends. Listen, it seems to me that we should do all we can to remember those who dedicated themselves to battling not only their personal illnesses, but shared in all of our battles. I never want to forget them.

Brenda Hutchinson was an amazing advocate for herself and for Her2. I remember one evening at a meet & greet thrown by Genetech at SABCS Brenda and I were seated next to one another chowing down when she said how she was debating whether to go chat up the Genetech rep that stood there in the room with us. She was bumping head long into opposition from the trial doc in San Antonio while she was desperately trying to get into their TDM-1 trial. There was an issue with an old spot on her MRI from a previous gamma-knife "tweak." I was surprised to see confident Brenda hesitate to go ask this person if he could help her move this doc to recognize it was only scar tissue showing on the MRI. Nothing worse than erasable docs!

I vividly recall Brenda bowing and inclining her head my way saying softly, "it's just that I am so scared." She was not referencing her fear of addressing the Rep, no, she was speaking of her fear of dying of cancer. Well, that was all I had to hear! I urged her to go with my favorite life-ism "nothing ventured, nothing gained." Up she popped and as I crunched on my chicken I watched in awe as Brenda turned on her substantial charm. I was on dessert when she flopped back down beside me grinning triumphantly from ear to ear. The rep was going to help her get into a trial in Denver, which as we all know did happen.

The point is that I observed Brenda meet docs, researchers, drug reps, politicians in her quest to get help in her battle against Her2. I remember watching her and thinking, "that's the key to self-preservation and self advocacy: getting them to REMEMBER YOU." I was powerfully struck by this revelation and I continued to observe Brenda and other stage 4 gals bravely reach out to those in the "know" and in positions to help. But let me stress, the first step is to shrug off that "diagnosis" tag that defines us as patients. If you want your Onc. to care about you the first goal is to get them to remember you, to see you as a person and not a diagnosis. I did that. I bet most of us have striven to do so. It is what Brenda did so well, she got them to REMEMBER her so they would want to help her get into a closed trial, or research more diligently "because you see there is that great gal with Her2 that I met once and I want her to live because she was terrific...."

It is my belief that because everyone whom we have lost to this disease fought so damned hard to stick around, to plow a way for those who have followed them, to bravely and humbly summon the nerve to ask, beg, and plead for help, they simply must not be forgotten by us! Five years from now I want the newbies on the site to be able to know that "crap on a crapstick" is a Brenda-ism and Brenda was fabulous, and brave, and amazing and I absolutely loved her. I did and I do.

Laurel

[rhondalea]

That was beautiful, Laurel.

[Nancy L]

I think this site did a nice job doing something like this. If you are not aware of this organization dedicated to metastatic BC, I encourage you to see what they are about.

http://www.metavivor.org/AboutUs_Motivat.html

[StephN]

NancyL -
All I could find in that site was the following:

http://www.metavivor.org/Awareness_InMemorm.html

which is basically a request for donations in the person's name (which has a short obit) and not a tribute page.

If you found something else, please give the exact link.

[Nancy L]

StephN
You have the right link. Sorry, i didn't mean to say this site would do the same thing as theirs but rather use some idea you think is appropriate. I like the picture and biography of what they did for the BC cause. It doesn't seem negative or scary which I know concerns some. Skip the donation piece for this site and maybe give a link to memorable posts made by the member over the years if not too much work

[Adriana Mangus]

Hi Everyone,

I'm all for it. It will be a loving and respectful way to pay tribute to all the beautiful Angels who no longer are with us.

I do, however agree with Stephanie, the decision would have to come from Joe's daughter- Debra.


Love,

Adriana

[sarah]

Laurel that was a lovely page and posts like that would be nice to see. I think it is comforting. That may seen strange but we need a way to say thanks and goodbye. we are like a family here. I think calling it wings or angels is nice also and maybe it would have a note: for seniors only.

[Cathya]

Hi all;

I am not in favour of a Memorial as there are so many that would be lost in the process. This site has grown in knowledge and concern as the members have expressed their views, experienced their disease and passed. Some were members who were loved and posted often and some passed by quickly and were gone. There must be a better way to remember all who were members here. I remember an Australian women (I hate to say I can't remember her name) who was very inspirational to me from years past. Would we remember her?

Cathy

[Jackie07]

Were you thinking about Kiwigirl from New Zealand?

http://her2support.org/vbulletin/showthread.php?t=54539&highlight=kiwigirl

[pibikay]

Hema and I are for it/But let it be a part of this forum

[sarah]

I'm still for it. Yes, Cathya you're right those who received their wings in the past won't be on the site unless someone makes a point to update them but we will remember many of them.
I would like to hear from a caregiver or family member about how they would feel. I know personally that if it was my husband, I would like to go to a section and add stuff and read nice things about him and read his postings but my husband would never visit the website so......everyone's different.
Another thought what about a post for those who've made it past 10 or more years??
health and happiness and to the end of seeing our sisters and brothers die from cancer
love sarah

[Marlys]

I, too, am really against doing anything contrary to Joe and Christine's wishes. I cry when my "friends" are going through the final stages of this disease because I remember what beautiful moments they have given me and I know where to find them again. I do not believe I would have joined this group if I had seen anything even resembling a memorial page. I have been on this site since 2005 and I love it. Please do not change it.
Love & Hugs,
Marlys

[tricia keegan]

I'm in favour and love the idea and would echo Laurels thoughts, I think we owe our departed sisters some form of recognition as so many of them went through earlier drug trials etc to help those that would come after them.

[Mtngrl]

Reading through these reflections is a fascinating exercise. We're all so different, and we each bring a unique perspective to the "big questions" about not just the meaning of this forum but the meaning of life, of suffering, of struggle, and of death.

I'd like it if we had a thread dedicated to honoring the lives and achievements and personalities of members who died. It would be great to have a central hub for anecdotes, insights, tributes, etc.

Newcomers need hope, of course, and encouragement. They need to know they have choices. They need concrete information and assistance. I think this site does that very well.

I also find a great deal of hope and encouragement for us stage iv folks, and, selfishly perhaps, I appreciate that. Many in-person support groups shy away from talking about death. And there aren't many stage iv groups. A significant percentage of people with HER-2 bc are metastatic at diagnosis. I was both a newcomer and stage iv. Everyone knows cancer is deadly. People who go looking for information and support are not the type to hide or deny. So, even newcomers, and even those diagnosed at early stages, probably need honesty and frankness about all the issues.

It's a support group. Everyone's idea of what that means is colored by what he or she needs at the moment, or finds helpful (or not), or expects from others. Each person uses this site in a self-directed way. Every thread is specific to certain groups of members. They don't click on the ones that don't appear relevant. To me, one of the best things about being in support a group is knowing I'm not alone. Right up there with that very high value is knowing I won't be forgotten. Having a way to remember and honor those who are no longer with us would serve both these values.

We're all going to die. Yes, it's sad for the survivors. (That's the only thing about my own death that bothers me. I wish I could shield my loved ones from the pain.) They suffer and mourn. But most of the time it gives their lives more depth and fullness than they would otherwise have had. I think awareness of our mortality is one of the most humanizing things about being human.

[Becky]

Well, I put this sticky up because this subject comes up from time to time. I feel obligated to ask ALL OF YOU your opinions because it is our site and (as an aside only), I am on the Board of Directors of the Her2 Support Group. As such, the board wouldn't exist without all of you coming here, caring and sharing.

However, I am also just a member too. I haven't even voted yet. I put this up for you. When I put this up, I really did want a Memorial page although I think that decision must be made taking into full consideration of what you want. There are many things to ponder. Some of these things have been brought up on this thread.

We have had a hard year on this board. Two long term members who everyone knew, Brenda, and now Sheila have passed on. Emelie B, Krisvell and others. Being a member 8 years there were members many of you will never know but would have loved very much such as Tousled, Lolly, Lisa (Love and Light), SandyH, Shell, Lily from Equador. But there are new members who come for our love, support and friendship. In this thread, many state they may not have come back after coming on the first time and seeing a memorial page. Since Brenda and Sheila have just died, you can image what that page would look like just with them. So, as me, just good ole member Becky, I will tell you what I have been thinking about. The group's name is Her2Support group. It was founded to give support to breast cancer patients and survivors who are Her2 positive. At the time, and actually even now, we are different from other kinds of bc. Different (and new) treatments and different and new outcomes. At home based bc support groups, we may find that we are the only Her2+ one in the group. Not so here and this is why Joe Druther created this site. So we can find each other. We understand "Herceptin, Tykerb, Perjeta, TDM1" etc. If I haven't gone thru it, someone else here has and can lend a hand - the word SUPPORT shines through. This is what we are. This is what we do. It is clearer and clearer to me everyday that we are a family of close friends who never meet, may never even know what each other even looks like or even know each other's real name (my real name is Becky;)). A memorial page may be very frightening for a new member who NEEDS us and may not post nor return. How sad that would be. I will say one thing. In our birthday section, our Angel members still come up if they put their birthday in. That may be a good way to remember if someone wishes. Start a Happy Birthday thread and if there is a funny story to tell, tell it. Also, anybody can start a thread about "Remembering SandyH (and her green shoes)" or Tousled or anyone at all. I'm not sure.

I will still discuss this with the Druther girls in the New Year if a memorial page or something like it is what you want. And I will do this just like a Congressman votes for his delegates even if it is not his opinion. But as just Becky, I believe support and the love and caring we all have for each other (which is evident) is what Her2Support is all about. I wish all of you peace during the holiday season and love during this difficult time on the board.

[SoCalGal]

I'm with you, Becky. Really well said. The most important thing we can do is SUPPORT. Thank you, Flori

[Debbie L.]

Hello all. I know this is an old discussion. I am smiling at the coincidences, however. I had a thought about this memorial/tribute idea, while reading another breast cancer list, and thinking that the way they do it might be of some interest, here. Then I come here to mention it and Alice has already done an anniversary post for Brenda, whose passing prompted Becky to start this thread last year! Talk about serendipity. Anyway:

On the bclist, around the 1st of every month, a "Remembrance List" for that month is posted. The post usually starts with a nice quotation about life or death, and includes the names and (if known) dates of death for every listmember who has died in that month, going back to when the list began in the 90's. Typically, one or two members have been responsible for this task for long periods of time, and I assume they pass the info on to the next person who takes it on.

This works well for several reasons. One, it's clearly labeled (thus easy to avoid if desired, or to search for later). For example: "October Remembrance List 2013". It makes it simple to spend a few moments honoring the ones who have passed on, yet allows each person to go deeper, if desired, into remembrance of a special someone (or special someones) -- by then using their name in a search of the site, or posting a new remembrance thread for them, or just sitting and smiling at a memory, etc.

It would take a group effort, and some time, to begin to amass the lists for each month. Little by little, we could all help with putting them together and keeping them current. But we'd need one or two people to lead the effort (manage the lists), and do the posts.

What do we think about this? How would we decide if we would like to do this? A new/separate vote? Or are there enough people strongly opposed to anything like this that it would be better to just drop the idea (I'm okay with that, although I do not agree, as I've said before in other threads). I would be willing to be one of the people doing this, but would probably not always be timely in hitting the exact 1st of the month.

Debbie

[norkdo]

exc idea.
i am for this

[alicem]

I think it's a great idea also!

[MCS]

Do we have a list of those who have passed away? I know we focus on living and helping to live
but we owe so much to those who braved it before us.

maybe just name, user name and dates

[PinkGirl]

MCS - there is a list of deceased members but it hasn't been updated in quite a while ... and it is sort of 'hidden'.

[fauxgypsy]

I see that this an old discussion. Was anything ever decided? I would like this very much.