HER2 Support Group Forums - Honoring Our HER2 Lost

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- - Honoring Our HER2 Lost (https://her2support.org/vbulletin/showthread.php?t=51828)

Re: Honoring Our HER2 Lost

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

Re: Honoring Our HER2 Lost

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

Re: Honoring Our HER2 Lost

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

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

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

Debbie Laxague

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

Re: Honoring Our HER2 Lost

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

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

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

I would hate to be forgotten by all of you.

Re: Honoring Our HER2 Lost

Nora,

I agree with you 100%.

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

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

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

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

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

Re: Honoring Our HER2 Lost

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

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

Re: Honoring Our HER2 Lost

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

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

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

Re: Honoring Our HER2 Lost

Steph,

Thanks for explaining the situation.

Jackie,

Thanks for the warning.

Re: Honoring Our HER2 Lost

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

Re: Honoring Our HER2 Lost

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

Re: Honoring Our HER2 Lost

Sheila needs to be added to the deceased list also.

Re: Honoring Our HER2 Lost

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