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  #1  
Old Sun Sep 22, 2013, 12:34 AM
Honey Honey is offline
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In memoriam

Hi Neil

I have a suggestion to put a section on your website to honour those members who have passed. It is not supposed to be morbid, but a place which could be used to inform others if someone has passed, a little about the person such as their age, type of MDS etc, and story, and especially a place where others can post their sympathies and memories of the member. Some I can see are close or have met.

I have nearly had foot in mouth wishing someone well, in an old post, only to find out later reading through another post that they had passed, as some notices about someone's passing is put in an unrelated post. It is also useful for some that may have been away from the forums for an amount of time or newbies.

I think those that battle this disease deserve their own acknowledgement and place to celebrate their life.

What do you think and members think? Again it is not supposed to be morbid or scary for those going through this process.

Honey
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  #2  
Old Sun Sep 22, 2013, 02:11 PM
PattiDean PattiDean is offline
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Quote:
Originally Posted by Honey View Post
Hi Neil

I have a suggestion to put a section on your website to honour those members who have passed. It is not supposed to be morbid, but a place which could be used to inform others if someone has passed, a little about the person such as their age, type of MDS etc, and story, and especially a place where others can post their sympathies and memories of the member. Some I can see are close or have met.

I have nearly had foot in mouth wishing someone well, in an old post, only to find out later reading through another post that they had passed, as some notices about someone's passing is put in an unrelated post. It is also useful for some that may have been away from the forums for an amount of time or newbies.

I think those that battle this disease deserve their own acknowledgement and place to celebrate their life.

What do you think and members think? Again it is not supposed to be morbid or scary for those going through this process.

Honey

Honey, I think that is an excellent suggestion!

Patti
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  #3  
Old Mon Sep 23, 2013, 01:05 AM
Neil Cuadra Neil Cuadra is offline
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We considered having such a section when we first set up Marrowforums.

The PNH Support Group used to maintain an In Memorium section at their website, but it hasn't been used in recent years. Almost every entry in their In Memorium section includes a photo, which is nice. There are no comments from other site members attached to the entries. As far as I know, people would submit the information and then wait for the PNH Support Group site operators to update the In Memorium pages.

A system that better matches this forum system would consist of a special subforum where each thread is in memory of someone we lost. A thread in that section could be started by the person's family or by a close friend who knows the circumstances. It would be up to the person who starts the thread whether to attach a photo to their post. In any case, other forum members could reply with condolences. Nobody would have to wait for Marrowforums to provide help.

Is that the type of feature you are suggesting? Is that what others would like to see?
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  #4  
Old Mon Sep 23, 2013, 05:07 AM
Honey Honey is offline
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Hi Neil

Yes that is what I am talking about, just another sub heading dedicated for this use, that members update. Notices seem to get lost in members questions, and unless you read everyone you may not be informed. I think passed members deserve their own special place.

Would that be hard to do? Perhaps the first could be from yourself updating all members that passed before the date of the new section. Again not sure how time consuming that would be for you. It's just a thought. Then after that notices can be posted from family, members, friends or yourself who have been notified and can pass the info on. I would expect it would be one thread per member.

I hope it is an easy install.

Thanks Neil

Honey
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  #5  
Old Mon Sep 23, 2013, 11:13 AM
sbk007 sbk007 is offline
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What your asking Neil to do is go through every thread looking for those that have passed. Not realistic. If concerned you might be responding to someone that is no longer with us, If you see a thread that has a date that looks to be ancient don't reply. Make good use of the search function. I appreciate all the time Neil spends maintaining the site, updating servers, spammers and keeping the webserver happy.
As a consolation anyone can start a thread to acknowledge someone.
Just my 2 cents..
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  #6  
Old Mon Sep 23, 2013, 12:04 PM
Honey Honey is offline
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Oooops!

Sorry SBK if I offended you at all. I was not sure if Neil could do it, he seems too be a whiz at bringing links to old posts up in threads, I thought he may have some magic search function or something.

I too appreciate all it takes to run this site.

If it is too hard to do I appreciate it. It was just a suggestion, maybe a dumb one. It was a suggestion though with the best intentions, and thoughts of others in mind.

I hope that clears things up. I am still new and learning my way around, so I hope you will be patient with me.

Honey
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  #7  
Old Mon Sep 23, 2013, 07:09 PM
Neil Cuadra Neil Cuadra is offline
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We could have a place for future threads about people we've lost from this community whether or not we find and include past threads.

I'm hoping to gauge the level of interest in having such a forum. Anyone who reads the forums long enough is going to learn of a death from these insidious diseases. People who read all the new threads each day will see these threads no matter where they are posted, so the difference in having a specific forum is that people will be able to seek these threads out after the fact and to see them as a collection. And I suppose they could also choose to purposely avoid the forum.

I've lost friends who I met in these forums and I want to pay as much respect as possible to them and their families. But would having an In Memoriam forum be too scary for newly diagnosed patients? People coming here for facts may appreciate hearing the honest truth that not all patients survive, but if it's the first forum they read would they be getting an overdose of the pessimistic side? Is it worth the risk to help us remember those who have passed?

Do others have opinions about it?
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  #8  
Old Mon Sep 23, 2013, 11:07 PM
Snuuze Snuuze is offline
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If I were new to the forum, I'm not sure I'd want to see a subsection dedicated to those who have not beaten the disease. While a nice way to give a tribute, I think it's better done in the posts. Family members can post a note when they are comfortable doing so within the specific disease. Condolences can follow that thread. I think the comments are more meaningful to the family than to see an entire section devoted to deaths.
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  #9  
Old Tue Sep 24, 2013, 07:07 AM
Honey Honey is offline
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Hi Neil and Snuuze

I too thought about the the scare factor etc of having such a section and would it be a worthy suggestion. I know some don't want to know, although as Neil says it will be unavoidable reading the forums regularly. But I thought this would give a clear area that those that prefer not to know and who can avoid reading or until they are ready. I know the feeling first hand only just being newly diagnosed and new here. But, I also found comfort as well, from the lovely support those give in the forums, that it doesn't scare me as it did in those first few weeks.

The motivation for the suggestion was because I was reading an old thread (can't remember who. I have read soooo many) and the announcement of someone's passing was sort of plopped in the general convo. I thought they deserved a spot of their own, maybe the author's mistake there.

Death is unfortunately a part of life with or without bone marrow failure disease.

Honey
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  #10  
Old Tue Sep 24, 2013, 07:45 AM
DebS DebS is offline
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Tribute

I have thought and thought about this. I am afraid that I don't have an answer.

Honey, it was so thoughtful of you to try and come up with a way of tribute to those who have fought bravely and not won with these diseases. They should be honored in any way that we can.

Neil, you are absolutely right about the scare factor. The new people on the forum would certainly be taken aback by a "section" devoted to this.

Maybe it is better, as was suggested, for a new thread to be started. Then people can express their thoughts and wishes for the family members.

This is NEVER easy! Doug's regular oncologist told him yesterday, that he "hopes" he can just make it through the upcoming treatments before the transplant. He went on to say that he is at such an "iffy" age. I can't tell you how I am still reeling from that one! Thank God his doctors at Loyola have been positive and encouraging.

For every thoughtless remark we have to endure, there are twice as many encouraging ones on these forums. I thank God that I have found you all!

Deb
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  #11  
Old Tue Sep 24, 2013, 08:26 AM
Honey Honey is offline
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I think we let the suggestion go. I don't think there will ever be a right or wrong answer. I was thinking of regulars of the forum not just newbies btw. Thanks Deb for acknowledging the thought. That was my intent, maybe a little lost in translation.

Honey
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  #12  
Old Tue Sep 24, 2013, 10:14 AM
edithr edithr is offline
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While I agree that having an "in memorandum" section could be scary for newbies, the reality is that by the time they find this site they have already realized they're in for a long journey. I would assume most here are adults, my son is 17 and he doesn't look at this site at all. Neil, do you know if there are many youths who use this site? If so, my vote would be nay. If you think most are adults, then I would like to see such a section.

I peruse this forum in spurts, so for me, having a specific section dedicated to those who have lost the fight would be a way to catch up with people who have lost the fight. I don't find it too different that the obit section in the paper, only that here I will probably know each of the deceased.

Just my two cents.
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  #13  
Old Tue Sep 24, 2013, 03:03 PM
Marlene Marlene is offline
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I think it's worth a try. I can't alway keep up on everyone and I participate on this quite a bit. I don't read every thread and have missed some posts on people passing.

I think Edith is correct when she says that most who have found their way here are aware that death is a part of the journey. I would not worry about scaring someone off with a new subsection.
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  #14  
Old Tue Sep 24, 2013, 03:18 PM
Whizbang Whizbang is offline
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It could be put in the 'Private' section so that only members could see it...
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  #15  
Old Tue Sep 24, 2013, 06:30 PM
edithr edithr is offline
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Wait, we have a private section? I've never been there. Whats it for?
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #16  
Old Wed Sep 25, 2013, 12:05 AM
Neil Cuadra Neil Cuadra is offline
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We've had some teen patients using Marrowforums but for the most part I get the impression that teens either aren't interested in all the nitty gritty disease details (their parents can handle that!) or they get their information and talk to their acquaintances by other means, e.g., Facebook. Most people prefer to talk to their peers so if we had lots of teens in the forums we'd get more teens, and if we don't have enough of them then we won't.

The last forum on the main forum page, named "Private", is available for any members who want to make posts that only other registered and logged in members can see, rather than making posts visible to everyone on the Internet. Very few have used that forum but it's always available.
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  #17  
Old Wed Sep 25, 2013, 06:42 AM
Honey Honey is offline
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Thanks Edith and Marlene, that is what I meant, maybe didn't say it as well. I agree we are adults, and know the journey. I think there will always be some that will lean towards doom and gloom as there are ones that will fight. Either will search for answers on the net that satisfies what they are looking for. The subsection was to celebrate one's life and pay respects, not scare. I don't think people have their heads in the sand. I was also going to say it is just like the obits as well, you read them or you don't.

I admit I didn't consider there were youngsters on here.

Honey
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  #18  
Old Wed Sep 25, 2013, 08:06 AM
Marlene Marlene is offline
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I think you expressed yourself well Honey. I also think that younger patients are more aware than they let on. And, we've all seen how well youngsters manage their diseases...with much grace and courage. So I don't think we need to walk like we are on thin ice here around this issue.

Our culture has a difficult time with death and allowing this topic to be visible will be helpful to most. I am always touched by the kindness of the members on this forum. I find it most comforting.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #19  
Old Fri Sep 27, 2013, 06:02 PM
slip up 2 slip up 2 is offline
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Think the forum is best the way it is.....in the last couple of months has been very emotional for many....some post what they are going thru with death & others not....

Some have different religious feelings than others & to me that would not be fair on this forum.....

Some believe in the hereafter, some say passing, some will share and some are not interested in posting about death.....there have been questions about death & dying mixed in with the regular messages....

Dying & death is up to each individual member to post & should remain that way.....

I posted about my husbands' death over a year ago & would not like to see it on a separate space.....


My feelings.....
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  #20  
Old Fri Sep 27, 2013, 06:33 PM
sbk007 sbk007 is offline
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Originally Posted by slip up 2 View Post
Think the forum is best the way it is.....in the last couple of months has been very emotional for many....some post what they are going thru with death & others not....

Some have different religious feelings than others & to me that would not be fair on this forum.....

Some believe in the hereafter, some say passing, some will share and some are not interested in posting about death.....there have been questions about death & dying mixed in with the regular messages....

Dying & death is up to each individual member to post & should remain that way.....

I posted about my husbands' death over a year ago & would not like to see it on a separate space.....


My feelings.....
+1 - Well said. Its a touchy topic, Great site without it.
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  #21  
Old Tue Oct 1, 2013, 03:32 PM
riccd2001 riccd2001 is offline
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+1 I concur. Remember that saying, "If it ain't broke, don't fix it!"
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  #22  
Old Tue Oct 1, 2013, 05:17 PM
edithr edithr is offline
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Originally Posted by slip up 2 View Post
Dying & death is up to each individual member to post & should remain that way.....

I posted about my husbands' death over a year ago & would not like to see it on a separate space......
Oh, I just assumed that if a loved one chose to post something about a death it would go in the "in memorandum" section, I didn't think Neil would move posts there. It would be totally up to you, or your loved one I suppose, to share.

And I am sorry for your loss, thank you for weighing in.
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  #23  
Old Wed Oct 2, 2013, 08:51 AM
Marlene Marlene is offline
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That was my understanding also Edithr.
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  #24  
Old Thu Oct 3, 2013, 12:46 AM
Neil Cuadra Neil Cuadra is offline
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There was bound to be a mixture of opinions about this idea. There won't be a consensus but comments are still welcome.

One choice is to put an "In Memorium" section in the Private area of the forum, so only logged in forum members can see it. If families choose to post there, that's fine. If they choose not to, that's fine too. In either case, the messages wouldn't be subject to search engine retrieval, so they'd be only for the registered users who are the regulars here. Those are the people that are most likely to consider each other friends and want to learn about passings and share their tributes or condolences.
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  #25  
Old Thu Oct 3, 2013, 07:43 AM
DebS DebS is offline
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Neil,

What a great compromise!!! I think this should satisfy everyone.

Deb
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