Your thoughts on Memorial page

[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.



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

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