Your thoughts on Memorial page

[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...174854465.html

Believe me it is well worth the read.

Love,

Lisa

[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