Your thoughts on Memorial page

[Lisa]

Friends,

I have talked to Joe about including a Memorial page on this site for friends and families we have lost. I, for one, want to remember every woman, and I find myself already forgetting names.

Joe feels this would be too depressing for those of us fighting to live. I disagree, and want to get your input to share with him.

Love and light,

Lisa

[dee]

It's not the stories of valiant women and men who fought the good fight and then moved on. One reason I find this site so hopeful/helpful, besides the tremendous opportunity to get educated about this subject like no where else, is because of our community of souls who are willing to share our stories, which provides me guidance in the choices I make to take care of myself. At some point, I will be faced with the need to make more difficult choices about end of life issues. I will want and need the stories of those who have gone before me, who've demonstrated what the good fight looks like at the end. Then, there's the simple issue of honoring our departed souls from this struggle to find a cure. Honoring requires remembering. Joe, while I truly respect your opinion in all matters, I humbly submit that mine on this topic is aligned with Lisa's thinking.
dee

[Lolly]

I think it would be fitting, and I myself don't find it depressing to remember those we've lost. I've made and lost friends at my treatment center, and I've kept a record of their names and the leaflet from the services I've been able to attend; not out of morbidity but a desire to honor and remember their lives by not forgetting them. It also helps me stay determined in my fight to stay alive, and carry on in their names.

<3 Lolly

[fourboysmom]

Part of the healing process is remembering those that have fought the fight before us. Let us never forget them. I'm in favor of a Memorial page. Love, Janet

[Sandy H]

If a person does not want to view the site then its their choice. If its there then they can make their own choice. Its not an issue with me either way. Sandy

[StephN]

Sensible as usual, Sandy!

I was thinking that since we have the survivors stories and some of those ladies have been "lost," that at least updating their stories may be appropriate.

It seems to me that the story of the battles won AND lost is the real cancer story - and is simply reality. Should not be a depressing thing, since most of us are still here.

[AlaskaAngel]

If there is one, I would like to see it as a separate place like the clinical trials and the reports, a place where one can choose to go whenever emotionally ready for it, rather than having that focus become a steady part of this area for comments. A.A.

[Unregistered]

While it is an encouragement to read the survival stories here, the truth of the matter is that "most of us" are not still here. I have seen many brave women die from breast cancer and all of us ultimatly will. That is the reality of the disease. If you post and chat and share your stories while you are alive then it seems a dishonor not to post and share about those who went before us. It is an injustice to people who come to this board not to see the whole picture. Yes we fight, but to know that are fights are remembered and made a difference to others is the greatest gift we can all give each other. I say yes yes yes to a memorial section.

[Nicola]

I agree that it is a good idea to honor all of the women that have gone before us with a memorial page. So many of them have been an important part of our lives whether we knew them personally or not. Their journey has led to many new advances that will benefit women for years to come, and their experiences have touched us deeply. We honor military men and women when they have fallen in battle, are we not as brave and as gallant in our battle against cancer, isn't our fight just as important for future generations. Everyone deserves and desires to be remembered, let us not be the ones who will forget.

Nicola

[Sherryg683]

I wouldn't mind a memorial page, but would like to see it seperate from the main board. Some are not ready to read memorials just yet when they are in a battle for their own lives. And having it seperate would give them a choice. I for one, am not willing to belive that we all will "ultimately die" from this disease. I'm keeping a little more hope out than that. We have come a long way in treatments and no telling where we will be 5 years from now..sherryg683

[Oliviab]

I agree with Sherry... and I was a bit saddened by "ultimately dying" from it as well. I don't mean to offend, but I guess I need to think positively.

[Audrey]

Lisa, I think a memorial page is a lovely idea--those who log in here could choose whether to visit the memorial site or not...I don't think it's too morbid, we could think of it as celebrating the lives of those women who passed on before us and remember the contributions they made.

[CLTann]

I was undecided early on, but the majority's sentiment persuaded me to side with them. Certainly many of us want to visit and remember past friends, just like in real life many of us do. That site could be like our photo albums, they are there for people to view at their option. I wouldn't call the albums depressing.


Ann

[RhondaH]

it is important for us to have a place to celebrate/mourn those that have left us. I also agree that it should be in a place like Articles, Clinical trials etc. Take care and God bless.

Rhonda

[al from Canada]

I am in favour of a memorial board. Joe, my question to you is if it was your wife, would she have a memorial? Personal I would want my wife immortalized in some way......in cyberspace if no where else.

respectfully,
Al

[Lolly]

I took our Guest's comment about "ultimately dying" to mean that we all WILL die some day. My surgeon put it this way; "You have incurable cancer, but our job is to see that you live long enough that when you die, it's not from cancer!" That sounded good to me, and still does.

Just wanted to share that.

<3 Lolly

[PatS]

I also think a memorial page is a good idea. Yes, it can be depressing, but it is also reality. I think it's nice to remember people who have been an important part of the board. I also think it would be a good idea to have it be a separate section of the board so you could choose when to go there.


Pat

[Sandy2]

I read your site all the time but don't post because I feel like doing so would be an invasion of "your" territory. I found this site when researching Her2neu+ breast cancer for my best friend who is battling it. I've found a wealth of information and encouragement here and for this I thank all of you. She doesn't read the site because I think she feels she devotes enough time to the cancer by driving 100 miles each way for treatment - she just finished her last daily radiation treatment, finally, thank God, but will continue Herceptin for a year. She already had the AC chemo, then Taxotere.

I think all of your stories are inspiring and that you are one brave group of spectacular and extraordinary women, and your stories are incredibly uplifting as well as informative, and it was with information gathered here that my friend was able to make informed decisions about her treatment options.

Unfortunately, reality is that in any group facing a life-threatening disease some will die. Women like you - making the decisions, participating in the clinical trials, taking the treatments, becoming informed consumers of breast cancer health care, being active participants in your treatment, and maybe most importantly of all, supporting and informing and helping each other along the way - are what it is all about. You are the pioneers, paving the way for newer and better treatments and someday, a cure. All of you need to be remembered, always.

I think a memorial site would be a lovely and appropriate way to remember and honor the brave women who fought but lost the battle. Those who love them will remember in their own ways, but people reading here need to know that these women were members of this group who gave support and encouragement here in whatever way they could - they were women who lived and deserve to be remembered, not just drop out of sight. They will remind us all why we need to keep pushing for a cure.

On a lighter note... I am a nurse and have cared for many, many middle aged or even very old ladies who had breast cancer years ago when the only treatment was a radical mastectomy, even some with extensive lymph node involvement - there were no tests for prognostic indicators, Her2neu, etc. But I'd bet more than we realize had the Her2neu tumors and they are alive and kicking and dealing with problems associated with normal aging, not breast cancer. So I think your optimism is appropriate - keeping hope alive and strong is always appropriate, even for those who've been labeled "incurable."

You are AWESOME.

Sandy

[lisahammo]

I think a memorial page is a lovely idea. I have to say, I love the thought that if I were to pass away, I would be remembered on this site, and my fight could be read by others, as it would be a huge fight to the last breathe. I think we deserve to be remembered and honored for all that we have been through, and yes we are ALL inspirations to others.

I also agree that it should be on a separate page, so people can choose whether to look at it.

Love Lisa

[sassy]

One of the main reasons that I continue to come to this board and have basically dropped any other boards is that those who post here and are involved are a positive group who offer support, encourgement, knowledge and a joy of living and celebration of life. I hope as others join us--even as guests, they will do so in this same spirit. I think a memorial page, listed as a separate forum, could be a continuation of the celebration of life for those we have known. As a separate forum, those who visit would be able to view as they choose.

Sassy
________
Hurt from prilosec (http://www.classactionsettlements.org/lawsuit/prilosec/)

[aquinis2000]

hi sandy2! I am really sorry that you haven't posted before because you might
"invade our territory". This board is everyones territory! We certainly need all the new opinions and fresh ideas that are out there. Please feel welcomed here and know that everyone enjoys new faces. Everyones input is important. Now that you've finnally posted, please continue to do so! welcome.

[IndyAnnie]

I believe that this site should have a separate Memorial page so that we can all choose to visit that site if we would like.

It takes a lot of courage to post your innermost thoughts and questions here, and what better place than this, to remember those valiant folks that have gone before us in this life. We should honor them with space on this website to celebrate their lives.

Ann

[Maryanne]

Lisa,

Very nice idea!!!

I do agree it should be a seperate forum not only for the obvious reason, but also a way for them not to get lost in the day to day posts.

[kcherub]

Was this ever created, or did the final outcome result in a "no"? There are other sites that have a memorial page, and I think they are done tastefully. I, for one, would like to think that I could inspire someone after I am "gone". I think it is the battle and our willingness to share it that inspires others, and not necessarily how the battle ends. :)

Take care,

[Jade]

Yes, Krista,

I absolutely agree - this is a topic that should be revisited as I believe it would be a very positive addition to the Board.

Currently in our cyber community (world) there is no final resting place for our winged members. We all grieve in our own way and for many it would be a comfort to have a place to go to remember. The friends who we've lost have taught us much and shown us strength, courage and character. They deserve to be honoured and remembered.

I agree that it should be a separate forum; even one containing some inspiring words of wisdom to help us process our thoughts.

A rough week here - love to all.

Jade

[WomanofSteel]

I think a memorial page is a wonderful idea. I couldn't think of a nicer way to remember all those who have fought so hard and touched our lives.

[PinkGirl]

Hi Krista and Jade & WOS
I brought this subject up awhile back and was
told (by Kate) that Joe and Christine do not
want a memorial to be part of this site.

Kate and I discussed this at length and thought
that the majority of members wanted some place to
go to remember the people who have died. I think
this was around the time of Nicola's death.

But nothing happened. We dropped the idea because
of Joe and Christine's wishes.

I wish we had such a place. I do not find it depressing
at all. We are a family which explains why so many of
us would like to see some kind of a memorial board where
we could visit with and remember our old friends. Kate and
I had agreed on a "forget-me-not" theme!!! That's my 2 cents.

[Bill]

Hi everyone. In my opinion, I don't see anything wrong or depressing about the idea. As stated, most of us have family photo albums of lost family members that we look at from time to time and while it may make us sad, more often than not, we remember the good, happy times. I have countless pictures of Nicola, and know her story well (wink), and when I look at them, I'm inspired by how strong and brave and beautiful and wonderful she was. I think a section on the site devoted to the wonderful people that have passed on would be like that. It wouldn't be too depressing. It would be a "room" where we could go to, and reminisce about them, and remember how much courage and selflessness they showed to others on the site. We're all family here. We need a Family Album. I'd like to go there and see our lost loved ones and reminisce, "oh, yeah, I remember the time so-and-so said......." I think that would help us to regroup and re-focus more quickly and resume the battle against this terrible disease.

[Becky]

It is difficult to decide which way is the right way to go. I think this site should be a hopeful place. A place where advocacy, support and knowledge are rendered unselfishly. This site should represent life and not death. That said, death is part of life. This we all know too well. But I would want newly diagnosed women to come to a place that has faith. A place where they can really believe that everything will be okay because for most early stage women, it will be okay. For the most part, many come and get the advice they need and the support through chemo/herceptin and then they leave. Unfortunately they continue to be quickly replaced by other newly diagnosed women.

Many of our angels will be missed by all of us. But there are some(that have passed on) that women on the site do not know about(because they died long before one joined the group). Perhaps it is best that they are known in our hearts. Their love and courageousness to be incorporated in our souls, their beautiful spirit to be remembered and admired as such than to have a place on this site where what - what would be there? Really - old posts of chemos that did not work? Of their worries and fears. I hope not. I prefer the love in my heart for them and that they are our Angel Warriors who are guiding the newly diagnosed during their most fearful time. Helping them fall asleep at night after many fitful nights. It is the way I think (for me) it should be.

[Leslie's sister]

this is a tough one for sure and I was all signed up for a memorial page, but after reading Becky's post, I get it. I understand those fear filled, sleepless nights that come with the initial diagnosis. I miss ALL the angel warriors, but I want the newly diagnosed to see and feel hope when they come here. I still feel my sister's terror during those first few months and finding the life and energy here is what helped to lift her (and me) up. Today, I would understand and appreciate, the memorial page. As a newbie, I would be terrified.

Lisa

[Bill]

Becky, that's one strength this site has- we are all family, and feel free to voice our own opinions, and hopefully, we all seriously consider other's opinions, carefully. Your comments made me realize that in my post, I used the word "I" alot, and right now, we are all grieving for Kate, Michelle, and Carol, thinking of ourselves, and that's perfectly fine. When you mentioned newcomers, that struck a chord. Those we have lost were all self-less, and Nicola was too, she transformed me into a better man. Perhaps we should think more of the new people coming to the site, instead of our own mourning. I don't see how we can do both at once. A good positive attitude is so important to the fight and beating this disease. If a permanent "room" is devoted to lost Sisters and Brothers, and failed chemos. like Becky said, it may harm others, and do more harm than good. I know I've done a 180 on the issue, and disagreeing with my Angel, Nicola, but we disagreed now and then, and discussed and debated often, but never went to bed mad, haha. Love ya!

[Chelee]

I can remember the day I found this board as if it were yesterday. I was scared out of my mind and searching for anything positive to hang onto. I wanted just a little hope...to know there was really a chance that I might make it through all this. That was so important to me...I was on a mission. (Panic mode.) I didn't want to see anything negative or depressing...I was looking for only positive things. I started looking for women that were my stage or closer that had positive nodes and were still alive. It was so important that I find some. I remember reading signatures and would instantly latch on to the women that were doing great. I remember finding women like Audrey & MichelleU and seeing that they were doing great.

My cancer center was so doom and gloom and they gave me *nothing* to hang on to. I can't stress that enough. I was so relieved to find this board and was even more relieved to find so many of the women doing great years later. :)

I have to be honest...had I found this board and ran across all the women that had passed away...that personally for me would of been too much at that time. (Could I handle that now...yes.) But I'm with Becky on this one...I really rather this be a place of hope. I remember telling my husband, Mother and anyone that would listen to me that I found this Her2 board and there REALLY is hope for me. I can certainly understand both sides of this issue but I really would hate for any newcomers to find this board and with their luck that is the first thing they would run across and start wondering how long they have to live. That seriously concerns me.

I use to talk via email to Lu Ann, & Sandy quite a bit...they were true angels. They hold a special place in my heart and I just have a feeling they wouldn't want newcomers to run across anything on this Her2 board that would take away their hope or depress them. (I can see both sides of this topic but I'm really worried about the newcomers.)

Chelee

[Mary Jo]

Hello everyone.......
That's one of the reasons this "place" is so wonderful. We are all able to express our views and share what's on our hearts and learn from each other.

I was ready to come here to say that I thought a memorial page would be a great idea. However, like a few others, after reading Becky's post I now see it a bit differently.

We "old timers" (thank God) have grown and come to see life differently (that's a thank God too) but being a newly diagnosed woman or man are at a totally different place. They are scared out of their mind. They definitely do need to read about hope and life. It's truly what keeps you putting one foot in front of the other at the beginning of this journey. I remember when my journey first started.........geez, if I read anything even remotely close to that dreaded "D" word I was done. I just couldn't fathom the "D" word at all. That's what makes the big "C" so frightening, right?

So, my mind is changed. I agree - this needs to be a place where women and men can come to gain knowledge, support and most of all love and hugs from each of us. We can help show them the way.......give them courage.......and then one day, they too, will be the encouragers.

God Bless each of you and thank you for each of you being who you are. You (we) are all special.

Mary Jo

[Mary Anne in TX]

I liked that we set a time in December to remember those we had lost and lighted our candles and prayed for those with wings. It was a meaningful night for me and allowed me to be grateful for those sweet souls we had lost, but then to move back into hopeful and striving for victory! ma

[nitewind]

My first thought, when I read this post, was what a beautiful idea. But the more I think about it, especially after reading Mary Jo's post, was maybe not such a good idea. I think this site is all about hope, I remember when I first read here, I thought, hey, maybe I'm not doomed after all. I'm not saying that we should act as though it never happens, but all of us and mostly the newcomers need to come here and find that hope that I found. Had I come here and first read about all the Angels, I think I would have stayed away after that. We all know that thinking about that "D" word can ruin a day for us and cause us to dwell only on the bad. Since I've been here for awhile now, I can handle reading and thinking about our dear sweet sisters who have gone before us, I love remembering them and going back and reading their posts, but I really believe that the newer people would have a hard time with it. Just my thoughts.
Hugs

[PinkGirl]

Hi Guys,
Every time this discussion comes up, it always ends
the same way..... we want this site to be uplifting
and positive and we don't want to frighten the newbies.

Just another idea - last night I went back and saved
the avatar pictures and signatures of the women who
have died. I put in some little notes to myself to remind
me about Sandy's green shoes and Kate's grandson Eli.
So, I guess I have created my own memorial to these
brave souls.

[Colleens_Husband]

Dear Friends:

I have to tell you that I think a memorial is a good, kind and appropriate gesture. We need to find a way to incorporate a memorial into this site somehow.

I also see Joe's point of view. When I first came to this site, and maybe all of you can relate to this, I was pretty scared of HER2 breast cancer. The information about HER2 you get from other sources is pretty gloomy and scary. Since being here, I realized that you can survive HER2 cancer and I realized it isn't a death sentence. If this site had a memorial forum on the front page, I believe it would have a pretty strong adverse affect on newcomers.

With that in mind, I think we can have a meaningful compromise. I propose we start a 'Chapel' forum. This would be a place where we could have prayer requests, discuss matters of faith, AND we could have a memorial thread so that Kate, Michelle, Nicola, and all the others will not get lost in the flotsam of thousands of posts.

Since God is an important part of the healing process for many of us, creating a sacred place on this site seems appropriate, without needlessly scaring the newcomers.

Lee

[goops]

When I was first diagnosed with cancer I quickly learned not to do any cancer searches on the web because every time I did I found doom and gloom. I later became more brave and started looking things up and that is when I found this board. I was looking for hope. A memorial page would not upset me now - but when I was new it probably would have.

I think we have to also remember that this is Joe and Christine's site, they have done a great job on it and we should trust them to know what is best for the site. If a memorial page was created - Joe would be the person stuck doing it and since he is against the project, we would be asking to much of him.

A possible alternative would be for a member here to create a memorial website. Perhaps Joe would be willing to add a link to it or have the link in a sticky post.

[kcherub]

Was the original idea of a memorial page to move posts from our lost friends? That was not what I thought the original intention was, but now I am not so sure (after reading Becky's post about failed chemos). That would be just silly, time-consuming, and kind of offensive! I need to go back and make sure I didn't miss what the original idea was!

Young Survival has a separate area called the "remembrance board" which is very nicely done. People post about members there, and even post about others that might not have posted on the site, but for whom they want to post a note about. Take a look at it--I think this would be a nice format.

Being a newbie last year was scary no matter what--I do check the remembrance area on Young Survival often, so that I can offer comfort to those who may be posting for a friend, family member or even someone they didn't know personally. I don't post very often on that board in other areas, but do send a short note to that area.

Not sure if this makes sense--I swear the Tamoxifen is giving me brain cell loss!

Just a thought!
Take care,

[PinkGirl]

Krista,
The first post from Love and Light Lisa did not
mention anything about including treatment
history etc. Some of the subsequent posts by
other members did mention this.

My idea of some kind of memorial page does not
include lists of failed chemo attempts. I am talking
about a page of photos to remember and show
respect to our members who have died.

[kcherub]

Pinkgirl,

That is exactly what I was thinking. If I could find a way to set something up on one of my sites, I would. They just don't seem appropriate and would be hard for anyone to find (I couldn't just put a link on the home pages--one is a pregnancy loss site and the other is for my children's boutique).

Maybe the idea will come up again at another point. It was a good discussion, nonetheless.

Have a great night!

[ElaineM]

Hi,
I log on to her2support.org for the positive messages, opportunities to share information with others in the same boat and for information about new developments
in cancer treatment. I probably wouldn't log on very often if this site contained a memorial as a main feature of the site. If the majority of members want a memorial how about putting in on the list with the other things like clinical trials and other kinds of information on the left side of her2support.org entrance? Then the members who want the memorial can click on it as a choice. My other suggestion would be to create a separate her2 website for memorials.

[dlaxague]

What a sad week. I send thoughts and prayers to everyone who is hurting.

I don't post often and don't feel enough like a part of the list to be entitled to weigh in on the memorial page issue but I'm going to do so anyway. It's just an opinion, not a vote. You all who work so hard to support each other on a regular basis are the ones who should have some say.

Is a memorial page a sad thing? Of COURSE it's a sad thing - it's normal and right to feel sadness about losses. It's normal and right to want to share words and thoughts and prayers about loved ones who have died. Personally, I'm not enthusiastic about formal memorial stuff because I like to think that the most important part of honoring and loving the dead person happens within my heart - I hold them there and remember them there. But I do understand and support the need to have formal memorials. Just like funerals, they are of great comfort to many.

Is it a scary thing to have a memorial section or page? Not at all, to my way of thinking. What is scary is cancer. But we can't change the fact that cancer is scary. We CAN, however, help each other get past that fear.

When I was first diagnosed, just as many others have said, I was terrified and full of fear. Fear of dying, fear of illness, fear of dependence, fear especially for the loss that my kids would experience if I died. What helped me? It wasn't finding hope that I wouldn't die of cancer. I knew that no one could tell me whether I would die of cancer.

What helped me was finding women (and men) living with advanced cancer and living so wonderfully. Living fully and with great love for life and for each other. Online, and later in person, I met people who were dying, or whose loved one was dying. What a rich and wonderful gift they have to give us, as they share the experience and help us realize that this, too, is something we can all do, when we have to. (and of course, we will all have to - life is terminal and we are all dying) Not of course that we want have to do it, but that it's entirely do-able. Entirely "normal". Incredibly sad but also incredibly rich and full of love.

Our society does not support us well, in the experience of death and grief. Our society supports fear and avoidance, as if by refusing to recognize death as part of the cycle of life, we can save ourselves from the pain. I think that it's the exact opposite The more that we hide death (and dying, and grief) - the scarier it seems to us, and more scared we are - the more we hurt.

Sometimes when I get caught up in fear, for a loved one or for myself, it helps me to remind myself that whatever is to come, this moment right now is what I have. Do I want to waste this moment in a panic over what could happen, or do I want to trust that whatever happens will be do-able. I've learned, from such wonderful teachers - about savoring the moments and about the deep capacity for love and endurance that exists in all of us. I wouldn't have learned these things if I hadn't had the opportunity to become closer to death. I wouldn't have learned these things if others hadn't shown me the way, through their words and their actions as losses happened. I think that memorial pages, and discussions of issues around death and dying, are wonderful and healing ways to share love and support I think that exploring these issues offers more support and healing than a million posts about treatment successes. But that's just me. I do understand there are other points of view.

Debbie Laxague

[kcherub]

Debbie,

Wow. That was a great post.

Take care,

[Vi Schorpp]

Your post was so sincere and succinct. I agree that society tends to "protect" us from death and dying and agree with you that it is part of the natural life cycle. I personally think the reluctance on the part of many to have a memorial site is that this site was designed to inform and empower all who visit the site. Most of us who visited this site for the first time were filled with an overwhelming feeling of dread and unimaginable fear. To see a memorial site might stop people in their tracks. I'm not saying that's rational, but when we feel so vulnerable and afraid I think that's an honest response.

However, I do agree with you that reading of all of the members living (and living vibrantly) with this disease is very helpful and vital. What helped me to dream of a future was reading the survivors' stories posted here.

As we become part of this community we become attached to many of the members. From this attachment we follow the success and struggles of so many and become like family and friends. As such, we want to memorialize them because they meant so very much to us. I liked Lee's suggestion of a chapel, and thought that made a lot of sense.

I respect Joe and Christine's inclination not to have a memorial site. Maybe someone on this board may want to take charge of creating a memorial site apart from this board. I'm not talented enough, but I'm sure someone is.

[Marlys]

I, for one, feel very strongly that Joe and Christine's wishes must prevail. That being said I did as PinkGirl and made my own memorial page with those who have left since I joined. I, in fact, have put it in the same folder with all the pictures of TipToe so that I can cry and laugh at the same time. I loved the scene in Steel Magnolias where Sally Fields expresses her anger about her loss and Olympia Dukakis tells her to hit Shirley McClaine and I found myself laughing & crying at the same time. It is so cathatic.
Love & hugs,
Marlys

[chrisy]

I've not commented on this thread; I remember when the original thread was posted after a similarly difficult time. I agree with Becky and especially with Joe and Christine's wishes.

I have another suggestion, tho. As flori said in the other thread, we miss the opportunity for remembrance and closure we would in a real life community because we are a virtual community.

We do have a way to do this - why not set a chat room date/time. True, cyber hugs will never really substitute for real ones, but it would be way to come together, say good bye, share memories.

[ElaineM]

Hi,
The suggestions about a separate memorial page or a separate chapel where people can drop in and remember people who are no longer with us is a good idea. Those things give everyone a choice about whether or not to view memorials as part of the main her2support.org site. It would also continue to provide the information, support, sharing and encouragement the majority of the people who log on seem to benefit from whenever they log on to her2support.org. Maybe the folks who suggested the memorial page or chapel could volunter as monitors of those things.

[kcherub]

The reason I brought up the original thread was that I didn't see any final determination on it. To be honest, I envisioned that the original idea as an area on the bulletin board page, where each person could have a thread in their name, and those of us who wish to could post our thoughts there. How wonderful it would be for families of our lost sisters (and brothers) to also have a place to post and to receive responses from us letting them know that we still remember and love their lost ones?

I have wanted to post remembrances from several here on other sites, but it just didn't seem right. They don't "know" us. The inclination, and then not doing so, is the original reason I brought the thread back up when I found it while browsing.

Does anyone know if the format was the issue with not doing it, or just acknowledging that some will be lost? That doesn't really sound like I wanted it to, so I hope that no one thinks I am being sarcastic! It's just the only way I can think to ask. Chemo-brain lives on...LOL

Take care,

[chrisy]

Krista, the issue was that Joe, and especially Christine, did not wish to have that be part of this site - and that she personally would not want to be remembered that way. I'm not trying to put words in anyone's mouth, that's just what I remember about the discussion.

In the end, we have to remember that we are guests here in Joe and Christine's home - and respect their feelings about what kind of place it is. I notice Joe has not chimed in on this thread, so I don't know what their feelings are now - as I said, I don't want to put words in anyones mouth.

Speaking for myself, I believe it is important to come together, cry, say goodbye, share our favorite memories of our beloved friends who have left us. In real life, we do that at a memorial service. This is why I suggested an online chat might be a good alternative. As for remembering, I will always have my memories of the friends I've lost from this forum...I don't need or desire a memorial page to do that.

Much love,
Chris

[Bill]

Good point, Chris. We are "guests in their home". The fact that Joe hasn't commented on this resurgence of the thread indicates to me that he has already stated his and Christine's thoughts on the matter, and feels no need to repeat himself. I'm not speaking for Joe or Christine, mind you, but it just seems that way to me. They've devoted an immense amount of time and effort to this site. It's amazing. The main focus is to share knowledge and support for each other, and uplift our common spirits, not "?dwell" on negative events by way of a permanent "room". Just my 2 cents worth

[Leslie's sister]

There are so many thought-provoking posts here. It is nice to read them all. This is definitely a group of thinkers!

But, I specifically want to respond to Debbie’s eloquent post. Debbie you are definitely an important part of this list. Your posts are always so well thought out and supported. Please keep posting. I love reading them.

When I read your post on this subject, it really caused me to stop and reflect once again about the memorial page idea. Everything you say is so very true. So what is the problem? Look at it like this, you are the equivalent of a college graduate when it comes to recognizing and accepting the realities of a cancer diagnosis and the possibility of death. However, many newly diagnosed persons are like preschoolers; they just are not there mentally. They only want to see the success stories, the survivor stories, and the stories that give them hope. Then, and only then, can they see themselves as a success story. And, as Andi, likes to point out, seeing themselves as a success story is an important part of the battle. Some get to your level of thinking, some make it part way, and some never get there.

An example being my sister- I found this site within a few weeks of her diagnosis and told her about it. She finally had the courage to look at the site and “freaked out”, because she saw that some that had her same cancer were not doing well, and worse yet, some had even died. That was it for her. She couldn’t bear to look at the site. I am her eyes, if you will, her filter, gathering information and sifting out the “stuff” that she simply cannot bear to hear. She is an extreme example, but I’m sure that there are many more that, if they came across a memorial page, would agonize unnecessarily. Is it a rational way of looking at this? Not necessarily. But everyone has different coping mechanisms and I want the frightened to find comfort.

I can tell you this. The warriors with wings already have a memorial here. What I mean is this, there are women whose battle ended before I came here, Al’s Linda and Living Legend Lyn, for example, and even though I never “knew” them, I know them. I know them through their posts in the archives, posts where they poured their hearts out. So, even though I wasn’t here during their fight, I feel like I was and feel like I’m a better person for “knowing” them. And for those that prefer to avoid reading old posts, well that is ok too.

Again Debbie, thanks for a great post. I mean that sincerely. I just reread it and plan on saving it for my own personal reflection.

Lisa

[dlaxague]

What a great discussion. Everyone has made good points.

I'm not arguing for or against the memorial page idea. I do have to say that I think this site "belongs" not just to the list owners but also to all of you who love it and nurture it.

You can probably already tell that the topic of death and dying holds only richness for me. Also, of course, it holds sadness but it's a sadness with a smile of love attached. Exploring what it means to know and accept that we are going to die has lessened my fear and increased my appreciation for life. There's no reason that everyone can't move toward acceptance of death as part of the cycle of life. I want to stress that I do not mean that the process will ever become "easy". It is inexpressibly hard to lose a loved one, or to face our own death. It is sad-beyond-sad, and sometimes lonely. But it's also a time of richness and opportunity. Opportunity for love and closeness and learning.

If we could take away the knee-jerk panic in response to the idea of dying that is such a common reaction in our society, there would be much less suffering. Someone else said it, also. The way out of pain is to lean into it. Avoiding it, denying it, refusing to look at it - those ways of coping simply stuff it deeper down where it festers and hurts us and eventually comes erupting out in even more scary ways.

I think that the way to begin taking away that panic is to have calm and loving discussions like we are having right now. Gently pointing out that there can be something for each of us, in allowing ourselves to explore the topic of death.

If we believe that in order to be okay after a breast cancer diagnosis, we MUST NOT DIE OF BREAST CANCER, then we are on the wrong track. Of course we hope not to die of breast cancer, but being okay is not about whether we live or die. It's about living right now in this moment with every ounce of love and appreciation we can muster. If we focus on live/die, we miss much. We stay stuck in fear and avoidance. If we shift our focus just a little bit, from not-dying, to living right now - ahhh - it's like taking a deep breath of fresh air that fills every cell in our bodies with love and appreciation. Okay, I'm getting carried away (smile).

One more point - for those who are actively dying, and for their loved ones, this site (or more accurately, the love that is present on this site) offers much. We don't want to put such an emphasis on "positivity" and not scaring the already-scared that we shut down these people at a time when they need our support, do we? And of course it goes both ways - in supporting and loving them, we are learning and growing.

I just don't see how a cancer forum can expect to function on anything more than a very superficial level if there's this avoidance of one of the most important subjects related to cancer. Those who are too scared to read don't have to read. Sadly, they probably are not ready to receive help from any kind of cancer site, anyway. I guess that there could be a special forum where only those who have not had a recurrence are allowed to post, and discussion of fear, recurrence, and death is banned. But what a shallow and stilted conversation that would be.

Love,
Debbie Laxague

[kcherub]

Debbie,

You have blown me away. Again.

I wish that I could put my thoughts into words like that. I am going to copy your post and print it out at my store on Monday. I might even copy it to my blog, if you don't mind.

Love,

[chrisy]

Debbie,
Very very well said. As always! Death is a part of life - a birth into something transcendant perhaps. My fear of death is far less than the fear that I might fail to LIVE fully while I am here. You said it much better than I can.

Your other point, about needing to have this be a supportive place for those who are actively dying is important. It is at that time that we need each other most.

Love to all
Chris

[Leslie's sister]

Debbie:

Your posts are incredible. I mean that. What an awesome person you are and what a support you are to those having to face their worst fears. Reading your last post made me think once again about the article in the Wall Street Journal regarding Randy Paush's "final farewell"

I found the link for it:

http://online.wsj.com/public/article/SB120951287174854465.html

Believe me it is well worth the read.

Love,

Lisa

[PinkGirl]

Thank you very much dlaxague for your posts. I could not agree more.

By not having a memorial page we are supporting society's view of fear and avoidance of death. I agree that the stories of the survivors who are living vibrantly with this disease are inspirational for the newbies. But what happens when those "living vibrantly" survivors die? Are they no longer inspirational to us because they died? I feel like we are sweeping them under the carpet so they don't upset anyone. That is crazy. Kate, Carol, Michelle, Nicola and Sandy were inspirational to me and important to me when they were alive. And now they are still important and inspirational to me.

I hope I am not offending anyone. This is how I feel. I really don't "get" the other side of this discussion. When I was dx. I knew that people died from cancer. I didn't join the her2support site to have anyone tell me that I was going to live to be 100 yrs. old. I joined for support and information. In the process I have come to know some amazing men and women who have become very, very important to me. I would not have been frightened by a memorial page. If I had been frightened I would have chosen to not look at it. I am starting to ramble.....

[ElaineM]

Hi,
I wasn't trying to be difficult when I suggested the folks who suggested the memorial page volunteer to monitor it. It is alot of work to build, update and monitor a website or a part of a website. We don't want the folks who do that for us on the her2support. org website to have more work. They do an incredible job for us already. We are blessed to be the recipients of their hard work and dedication.

[sarah]

It's so sad we've lost some more members.
I am in favor of a memorial page.
I do think it should be in a separate area to the main forum page because newly diagnosed people may be too frightened seeing it too soon. Any way to restrict it from new members until they've progressed to "older" members?
I think of so many of the members who have passed and their caring families as friends, I would like to see their names remembered with a photo of photos. Perhaps it could stress their lives, what they did, hobbies, family etc more than just born and died dates. maybe even avoiding the past tense? They are still here in my mind, just silent. I think the families who have lost someone would be the best ones to decide the appropriate page. I also think it might help the families with their grieving to know how much we all care about them that we want to visit the pages to remember them fondly.
hugs and love to all, especially those of you who have lost someone dear to you
sarah

[PinkGirl]

Sarah,
I am certain that there would be a way to
prevent anyone from seeing this memorial page
if they did not want to view it.

With all of the boards, threads and posts, we
have to "click" on them to open them.

[tricia keegan]

Debbie like everyone else I loved your post and your idea's,thank you. As I see it nothing will come of this unless Joe or Christine wish it to be and of course we all respect that. I for one, am in favour of a memorial page and think it fitting that the people who we shared so much with and inspired us in life should still have a place in death.
When I first found this site on the recomendation of a friend, I was told not to come here and that it would scare me. Of course always the rebel I had to check this out for myself ! I found quite a few ladies dealing with stage iv dx but rather than frighten me that had the opposite effect. They all actually lessoned my fears and I felt if or when I did recurr chances are I could stay reasonably okay for years in tx as these brave ladies were ,without dying. That was a major revalation for me as I'd always believed a stage iv dx meant a death sentence and I would'nt have known this was 'nt always so were it not for reading daily posts here about their day to day lives tx's and troubles and happy NED moments.
I think for the people who may be scared off by a memorial page (and they don't need to open it if they're not ready) there are many others who like me will gain hope and inspiration while still getting a realistic picture of what this site stand for, but also what her2 cancer may mean. There may be sadness at those that have passed but admiration and hope for the one's who have'nt and are still doing well. It's a fair mix of both I think.
As you all know I met Carol through this site alone and Chrisy sending me a pm to alert me, had I not met her here and given her the info/advice on herceptin here and Tykerb , Onc's and various medical issue's she would not have come to Ireland or had Tykerb which gave her more time,, and therefore would not have passed as content or as relaxed that her family were settled around a larger family group to support them in Ireland. Carol herself wrote a letter read out at her funeral mass thanking the medical profession here for welcoming her with open arms, myself for helping make it possible and most of all the her2support site which made it ALL possible for her.
I can't think of a nicer tribute to Carol or the her2 site than to have that story printed on a memorial page for anyone to see. I think it shows how Joe and Christine and the her2 site are changing and affecting people's lives daily and often in a big and rewarding way, all over the world.
I see this as something good and to smile at, not sad at all. These stories may not have a happy ending but thats life, no one that comes here is expecting Disneyland, but a message of hope and kindness and friendship still can be found.

[tdonnelly]

I hope that a Memorial Page will be added to our website. I personally have continued my "fight" as a medical map for my children to have as a future guide should they to have to confront this disease. Our signatures of Dx - treatment provides a wealth of information for all that follow as well as researchers, doctors, etc. Five years from now I would like to think that what I shared online could help make a difference to someone else battling HER2 breast cancer. Isn't that what this fight is all about - Paying it forward ?
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+
Thyroid Cancer 1992 Hurtle Cell
Skin Cancer - 2003 (Under left eye)
Lumpectomy (RT Breast) 11/06
Power Port
A/C - 4 cycles, Taxol - 4 cycles (2 Neulasta shots) *Severe neuropathy (legs,knees,feet)
Herceptin - lost count...almost finished
Radiation - 28 treatments (damage to rt lung)
Biopsy - left breast 04/08 Ongoing skin rash- Negative for cancer

[Catherine]

Just wanted you to know that I am lurking (and I have no idea why this is typing in bold). As usual, I am impressed with the conversation and the love and thoughfulness of each member. It took me 8 months to find this site after my Dx in April 06. My Her2 sisters here and in heaven mean the world to me. I, too, see both sides to this memorial page idea. I, too, do not want to scare any newbies away. It might have scared me away. When I first signed on, I was excited to see so many gutsy women that were sharing information. I had a lot of questions that I only seemed to be able to get answered on this site.

Hugs to all of us here and in heaven,
Catherine

[Andrea Barnett Budin]

When I was first dx I had the usual stunned disbelief and the "all but paralyzing" fear". I quickly began buying books about bc. My DH Paul and I read voraciously, informing ourselves, aware that knowledge is always empowering! Whenever I got to the statistics I immediately tossed the book aside.

It wasn't that I couldn't handle it, and not that I was in any kind of denial, I just KNEW I needed to focus my attention on healing and becoming well (versus all the negative potentialities). No matter what, I fully intended to be in the little group described in all the books as surviving 5 years. Additionally, right off I KNEW I would be *starting* w/5 years. I needed to read different books. Ones that would inspire me, not discourage me. Ones that knew I was not a statistic, but a unique human being.
I yearned for others LIKE ME. (3 yrs after my '95 dx my bc had spread throughout my liver AND I then knew I was HER+!) However, at that time -- I could not handle this wonderful site! I was focused on thinking positively, fighting the cancer and the fresh fear, as my odds had dwindled to a new and staggering low. The few posts I happened to read scared me away. I saw so much suffering and searching. I had to distance myself to protect my fragile state of mind.

I guess I somehow missed the encouraging posts, the tales of victory. I needed to meditate and envision myself as a Survivor, unimpeded by all things depressing. I needed to come to own my Knowing that I would prevail. To BELIEVE! I Knew I needed to live AS IF what I wanted so much was truly on its way to me!

Yes, death is quite the downer, as we all know. I decided not to consider death by bc as being my destiny. I would die of something entirely different, far into the future. I intended to be at my then 2 yr old grandchild's wedding. And, at her 40th birthday, if you must know!! I was adamant. This was the energy I consciously chose to send out into the Universe. I learned that from the books I'd been drawn to.
So I certainly understand a newbies state of mind, and in particular w/this marvelous site. I would return years later, as a Survivor (somewhat firmly established in NED, beyond cautious remission). I would offer my experience for others to feel inspired. That worked for me. As a senior in Life Lessons I can handle anything thrown at me now. I have grown stronger and braver, tougher and more gentle all at once. All because of ca.
Still, I learn every day from my Sisters on this board. I am open. I continue to grow. I fall in love...
As most of you know, I have been hanging out in chemo rooms (in New York and in Florida) for most of the last 13 yrs. You can check out my signature below for details.
My point being, I have come to know a lot of dead people. When I first began losing chemo mates it hit me in my gut. It was wrenching. Frightening. As many of you can readily relate.
In '95, I knew, for example, that Florence was not doing well all of a sudden. She was a lovely older woman I sat with weekly and had come to know well. When she did not show up, Paul and I asked for her. A few times, her counts were down and she could not get her chemo, the nurse explained reluctantly, smiling sweetly. She was trying to be gentle. She had been down that road many a time, I now can see, in my rear view mirror. Then came the time I asked and there was that long pause. The nurse, Mary Lynn, locked my gaze into hers and softly told me, She's gone...
That was '95. Today, as I have had the good fortune to know many wonderful chemo mates and Sisters, I have also lost far too many. I've attended some of their funerals. Written cards and a special letter to the 7 year old daughter of one who I dearly wanted to be able to remember her mother and know how hard she fought to stay with her. How completely this child was loved. So that became a mission for me, to ensure that this darling child could have the essence of her devoted mother in words, to look at through the years as she grew.

http://cdn-cf.aol.com/se/smi/2b00001c91/06

Forgive my digression please. I plead guilty. I just want to give you my view from where I stand. The various Cancer Centers I *frequent* (I am laughing at the irony) have something in common. They do not dwell on those who have lost their battle. Surely the nurses clearly form affection for all entrusted to their care. We who know these warrior women of extraordinary valor hold them in our hearts forever, and in the highest of esteem. Whether they survive or not. But I believe it is felt (by the powers that be, at each Center) that it is in the best interests of those who do manage to be victorious, not to be brought down by our unwanted and painful losses.
Still many wish to properly honor our fallen soldiers. To remember them. To have a place they can go to touch them when we feel the need. To have a page of FORGET-ME-NOTS -- for those who have evolved to a point that they can handle tiptoeing among the gravestones, if you will... I respect that need! How could I not?! I am one with my Sisters and Brothers.
I believe we best honor those whose battle with ca has ended by planting ourselves firmly in each moment of each new day. Not lingering in yesterdays or worrying about tomorrows. Tough challenge, yes indeed! That is a Life Lesson I have learned well on this journey!
In carrying on our fight with as much grace as we can muster -- we pay tribute to those who are gone and to Life itself!! And this is surely what the loving Sisters they have parted from would ant for us.
Last year I was in a bit of an emotional slump. A social worker at the Center who sees me every 3 weeks, forever, sensed that I was not myself. We have exchanged views on positivity, cognitive behavior and Spirituality on numerous occasions. We are on the same wave length. This young woman is a bc Survivor. She pulled up a chair beside my recliner as I was getting my *fix* and asked, What's going on? Suddenly I realized and gushed -- in a matter of years, I had lost my dearest friend, I had lost my buddy who sat beside me at every chemo for 5 yrs, I had lost my friend of 25 years who was like a brother to me and more, more, more... I began to realize my list was quite long.
Kathy suggested to me that I go home and write their names down on a piece of paper. And then to put my finger on each name, one at a time, and say a prayer, thanking God for allowing me to know that person and have them be a part of my life. Then to say a prayer for them, that they may rest in peace, and know that they are still much loved.
I had accumulated several dozen names much to my surprise! I did as was suggested. It was a very powerful ceremony. It was cathartic. Clarifying. Elevating. A most profound experience. I mention this as a possible means of coping for you.

So, though I began reading this great thread that is full of much wisdom and substance, I thought I favored a memorial page absolutely. Now, I find I am conflicted. Certainly, I do not want to sweep our fallen heroes under the rug. And I do not want to bow to, and perpetuate, our society's inability to deal gracefully with death and dying (as I have come to duly note and scoff at as something that urgently needs rectifying). However, it is essential to me that we uphold the hope, inspiration and promise of this beautiful site at all cost. What to do?

I favor a special chat room session in which those of us who feel the need to come together as a virtual community and speak of our feelings, our remembrances and our admiration for Sisters who have gone on ahead of us. Perhaps it could be sporadic, suggested in a thread proposed by a member for a specific upcoming date and time, as needed. Those who do not wish to, or can't bring themselves to for whatever reason (as their personal journey dictates), simply will not log in. Some are fresh from traumatic events and their emotions are overwhelming. They need time to heal, understandably. We are human beings after all and humans are chock full of emotion. (What a great suggestion, Chrisy! Thank you, my sweet.)

I also rush to add that I feel it would be disrespectful to delete those who have passed on into non-existence. That is too austere, too drastic. Whoever wishes to familiarize themselves with certain old friend's faces and words of encouragement should have access to such beauty at any time. That's what I think. Much benefit could potentially be derived in my view at any time... I cherish Kate's words, Michelle's, Nicola's, and so on. Please allow me to reach out and reconnect at will, Joe and Christine.

Could there be a special category on the board where we could honor each and every Warrior? A part of the board, yet apart. Separate. For all who wish to reminisce in a bittersweet way, to post their sentiments. FORGET-ME-NOT. Courage is seeing what must be done and doing it anyway. Yet courage at certain times is all about getting through the next hour. Both these points of view must be dealt with in the interest of us all, for the betterment of us all.
<B>With much love always, Andi

</B>