Asking the General Group for an opinion

[elnodel]

Becky, Amen and Amen!

Ellen

[hollyanne]

I completely agree with Ginny. While losing someone is so difficult regardless of the relationship, it is different when you lose a spouse versus a parent or sibling. I needed and continue to need all the support from thise who have lost loved ones before me, regardless of what forum they are in. I just hope that all who lose a spouse continue to post in other forums as well...

I needed their support when my mom was sick and I still need it.

[bethluvswill13]

Ginny,

I haven't lost a spouse, but I think that's a wonderful idea. My dad just passed and my mom could use some support like that. Good luck on getting things started.

[shirleyb]

Just my two cents on this.

I think the idea is wonderful but I also realize what Connie is trying to say. In some respects, a grief support group would be helpful. What ties us all together though is the fact that we lost someone to lung cancer. But I also understand the limits of Rick's time which is so valuable, and I also understand the limitations of the server to support this.

So I can see both sides of it.

That is all.

Praying for all of us as we each take our journeys through life.

Shirleyb

[RandyW]

Out of 365,000 new diagnosis 165,000 will not be here next year. What about a subforum if that is possible, from a widowers perspective. I am fighting now for everyone else. I have nothing left to gain, or lose, come, or go. I am here for everyone who is still fighting. i post where I feel I need to post when I chose to post. My only thought is a subforum for widow/widowers if possible. Good Night and prayers for everyone out there in Cyberspace.

[ginnyde]

Chapter 2.

There are so many eloquent people on this site, who say things so much better than I.

Becky hit on so many of the points that I wish I had said.

I have lost a Mother, a Father, 2 sisters, all of my grandparents and uncles and aunts, and 3 nephews, all of them in their 30's or 40's. I have mourned and greived and missed all of them and continue to this day. My Mother died in 1968 and I still speak to her. I called my sister every day on the way home from work. She died in May 2004 and I almost have to sit on my hand not to call her.

BUT losing my husband was different. I lived with him 24 hours a day, I shared a bed with him. He was my friend, my sweetheart and my lover. No one else fit that same profile. Additionally, there were all those legal and accounting things, changing names, chasing down documents etc. etc. etc. All being done while you are in a state of shock.

What prompted this request was talking to some recent widow(er)s that were floundering. We thought we could offer some help with people that they felt some affinity with.

I apologize for getting on my high horse, but I was feeling dismissed again. Dismissed before a full discussion could take place.

Maybe subcategories within Forums - probably a technical nightmare.

Another confusion - I don't understand how Hall Pass and Updates would be in the same Forum. What am I missing?

[SBeth]

I've recently lost my husband. Prior to Bill's death, we signed on with Hospice and all treatment stopped. As everyone here knows, treatments change, science continues and before long I will have nothing to offer to those family members on the front lines fighting "our" lung cancer. I won't have the experience or probably even the memory of what treatment or drug caused what side effect for Bill...but I will ALWAYS remember what it felt like to loose him and miss him. That is something I will always be able to offer to a newly widowed member. I celebrated and suffered thru the ups and downs of lung cancer with my family here...I don't want to move on and grieve on a site where I am just Beth and not Beth-n-Bill. I'd like to stay here and offer my support to anyone that I can and I think that a forum for widows/widowers would be good. If there are members/warriors that don't want to come to such a place, then they don't have to, but for those of us that want to help and would like such a place...why not? Thank you Ginny for asking for my opinion.

Adding machine anyone?

[Andrea]

Again, Katie and Rick (the ultimate decision makers)are gone. They are not reading the website right now. They are on vacation.

Please everyone don't get bent out of shape just yet, let's wait to hear what they say I am sure Katie doesn't want to come home to read people jumping down each others throats.

[shineladysue]

Ginny,

As a new widow , I find I very much need a forum such as the one you suggest. The death of a loved one is painful no matter what the relationship, but the death of a spouse requires an entire lifestyle change. I know that I myself am faced with challenges, decisions , paperwork etc. that I have no idea how to accomplish. I could go off to another web site to seek new friends , but I much prefer to stay here with my lung cancer family. There is much comfort here to me. I feel I am among family. There is so much foreign in my life right now , I don't need to have to be shuffled off to strangers to get support or help. Yes, it would be so nice. This is not to take away from the grieving forum or to downplay the grief of anyone. It would be to address those special needs of widows and widowers. Katie and Rick, I hope you understand where we are coming from. We love you and hope you can make this possible.

Love,

Sue

[Connie B]

I agree with Andera in that Katie and Rick aren't here. I might also add that when requesting a new forum or idea, it really is best to do it in a PM to the Admin/Katie/Rick and let them post it to the board and get ideas if they feel it's worth looking into it. As someone said, it's costly and time consuming to create and to maintain all these forum.

All the decisions of creating, adding, deleting, changing forums are totally up to Rick and Katie.

Even I went to Katie a while back and ask for the Survivors forum.

So, please let them enjoy there first vacation in 3-1/2 years and try not to bomb-bard them with all this if you would please.

Let me suggest this. How about if someone starts a Widow/widower Website and ask Rick and Katie if they would put a link on this board like they do to Juice Plus, etc on the top of the page here, to the Grief Board for Widows and Widowers, or even add more to it if you want. That's another option. Now that might be something that would work very well. Just a suggestion.

[tnmynatt]

I also support this idea (Ginny's idea). I think Peggy mentioned being prepared for how to handle things. I have already gained from reading just for this purpose. Keep going and moving!

The other important thing to me is already "knowing" others that are traveling the same road. The CancerCare site makes you move on to a grief support group. You've lost your spouse and your support group. That isn't right.

Take care.

[stand4hope]

Hello again, sorry to chime in with something else - well, no, actually I'm not sorry. Tee hee!

I just want Andrea and Katie and Rick to know that I actually don't think this is one of those angry threads that we all hate. I think it's turned into something very positive. Everyone is speaking their opinion and being friendly about it. I think this is a good topic and a healthy discussion.

I would like to add that I would not like having a forum off site with a totally separate forum like the Juice Plus ads, etc. My reason for that is that if I stay, I wouldn't feel like I was part of the group. Know what I mean?

OK . . . . slinking back into the sidelines. I think I just heard Don yell, "Get off that d*%# computer and go to bed."

Love,

Peggy

[hopeandstrength]

I just wanted to say that I also support the idea of a widow/widowers grieving board here. Even though I haven't lost a spouse; my mother has, and she is having such a difficult time dealing with losing her "best buddy". I think it would be very helpful to a lot of people.

Cathy

[Linda661]

OK, I am getting a bit intimidated by this topic as a newbie.....lots of responses flying all over the place, and I just hope I remember what the heck I am doing/saying here:

Somewhere along all these responses, I thought I picked up that some of the particular issues in the new proposed forum might be dealing with all the "paperwork" and such that comes with what widows/widowers deal with......that is a real concern and generally unique to spouses, but I hope that others would be welcome to comment if it got going: I have actually been dealing with those issues since my dad's passing on my mom's behalf (even before she got ill with LC).....it's a messy, messy thing and is a horrible, taxing process in the midst of just grieving the loss of a loved one.....widows and widowers will probably know what I mean when I say you can just feel like "everyone in the world wants a piece of you when you get up in the morning....they just won't leave you alone....it's like the whole world will take all of you away, if you let them." Sound familiar at all? That's what it has been like just dealing with the paperwork issue after a loss (and I am not even dealing with special emotions that come from the spousal loss issue) -- this area doesn't get a lot of support in the usual local venues, to my knowledge....it's pretty much as individual-specific as much as LC reality is and really could use "friends helping friends" through it. Just my additional two cents' worth for the ultimate evaluation process in the viability of this forum option.

And....to all of those who lost their loved one and aren't sure about whether to stay here or not: this makes me really, really sad as a newbie; most of you who have posted here in this thread with those comments I have followed in many posts since I got here......I am learning from you and watching the wisdom you are giving me as well as many others -- don't you ever think you aren't appreciated here!

If I was way off base with my new comments here, I'll just apologize now in advance...

Linda

[Nushka]

I have no idea how complicated it is to run a web site such as this one. I do know that it is very time consuming and expensive. That being said, if at all possible, I would really like to support the idea of a widows/widowers forum. If something happened to me, it would help my husband so much to be able to talk to people who "knew" me and ask them questions. This has come to be home for all of us. We love each other and depend on each other. Having a place to talk to others in the same boat is what this place is all about. Lung cancer has come into each of our lives. Becoming a widow or widower is sadly part of it.

The people here that have shared their journey through their disease, hospice, funerals and grief process are still part of my family. I love each of them. As a patient I don't want to read about all of their "new" problems but would hate it if they had to leave. I still need their love, knowledge and support.

This site is unique. We all know how much is has become a part of our lives. I would not like to see even one member feel uncomfortable here. If there is a need and (very important AND) there is a way to do it practically, then I vote for a place just for them. If not, I hope that they will stay and continue to post in grieving. Maybe just put something in the signature that states widow/widower responses.

The last thing I want is for politics to play any role in this community. Katie and Rick have created an entire new world for those of us that really need it. It is our safe haven. I can't say enough about how greatful I am for that.

I love each of you dearly.

Nina

[MalouDP]

How about "GENERAL/CAREGIVERS & FAMILY MEMBERS"

make this into one FORUM.

Then on the "GREIVING" add WIDOWS/WIDOWERS.

I think the GENERAL and CAREGIVER/FAMILY MEMBERS forum are a little reduntant really.

Also, I agree on Ginnys comment, HALL PASS /UPDATES,

to me just don't somehow blend. "TEST TIME/RESULTS TIME" Should be called "TEST TIME/RESULTS TIME/UDPATES

My .50cent only. No offense to nobody. I love each and everyone of you here.

Malou

[karenl]

I agree that it would be a good idea to have a separate section in the Grieving Forum if spouses feel they need one. I very much feel for what Beth said about wanting to stay where people know her as 'Beth and Bill', not just 'Beth'. I also think the danger of suggesting that these people move on to a separate grieving board will result in a serious depletion of valuable resources. As has been said earlier, this disease takes few prisoners, and we need to keep the resources that we have - the loved ones left behind. The reality is that there are not many long term survivors of advanced lung cancer. If the carers don't hang around to help, then newcomers will be forced to continually 're-write' the book. And these widows/widowers are our friends - I want them to stick around!

When Mum was alive, I almost never read the Grieving or Obit forums. I needed to believe that we were going to beat this thing, and I needed the support, advice and information from people who had been there before us. These days, I spend alot more time in the Grieving forum, but I still read the rest of the board and contribute if I think I have something of value to add.

I understand that it is perhaps a logistical headache for administrators to keep refining the board, but the loss of a beloved spouse is likely to be the single most devastating event of a person's life. I believe we need to recognise and respect that fact by listening to how they think we can best meet their needs. If they go to another message board to receive the support they feel they need, then we will all lose....

Katie and Rick have done such a wonderful thing in developing this meeting place - they both deserve some sort of award!! , and I'm sure it is quite a different creature today than when it started out. I hope that it can continue to grow and evolve in response to the needs of its members.

[Maryanne]

Okay my turn. First of all, I don't feel that this post that Ginny started is becoming negative. I am very overwhelmed by the responses and feel they are all very emotional and straight forward. I don't feel they are intimiding in any way.

I feel Ginny's idea is a good valid one. I know Ginny along with some others would be good mediators for that forum.

I feel when a spouse passes a person posts in grieving, obit. Then some wind up later on in general. I think if they had a place to go to vent their fears to others who have been through this, this would help them through their grieving process and help with the healing. Instead of posting sometimes just all over the place ie: greiving, spiritual, caretakers, general etc. This could be just their place to get the help they desparately need.

I don't feel they should have to go to another site for support in grieving. They are comfortable here among their family on LCSC who has been with them all the way.

I know that many leave after awhile and it should not have to be that way. We really need them here to help with support for others and help others through the grieving process and most importantly support for our newcomers.

I thank G-d I have not experience a loss of a spouse and cannot even think about such a horrible loss.

The only thing is, should it just be for the loss of spouses? Then should there be one for other losses ie; mom, dad, bro, sis etc.? That may be the problem as that would be more forums and more work. Or we can keep the "others" in the grieving only like we do now.

I personally feel, it should just be for the loss of spouses only, but that is just my opinion.

I love you all, and I am so glad when after a spouse or a love one passes you stay with us. That to me is priceless. I thank you all for that. I know in my heart that if anything happened to my Joel, I know you would be there to support and help me get through this....so maybe if we had a separate place to go this it would be for the best.

Just my opinion. I will respect whatever the outcome. I am just thankful to Katie and Rick for making their dream a reality. Where would we be without this site?

Thank you so much Katie and Rick...

Maryanne

[Frank Lamb]

OK,time for my feelings on this as well.I feel somewhat fortunate as it is pretty good odds I will never have to suffer the loss of my spouse.I guess I am luckier than most folks in that I somewhat know about how long I have left and what is probably going to get me.I cannot imagine how difficult it must be to lose your significant other.

I feel the two worst times of lung cancer are the fear,uncertainty,lack of knowing what is in store,and all that goes with the initial diagnosis.

AND

The terrible,crushing,devastating emptiness that has to accompany the loss of your spouse.

We have so many here that lost their spouse and elected to stay aboard in order to not only help others deal with things they have already been there and done.But also at times to borrow from those that can help them with the adversities of dealing with the loss of their spouse.

I seldom post in the grieving forum but I do read.I have to say my heart goes out to each and everyone of you.

Katie and Rick have the say so on this as well as the workload of making any changes.If there were any way possible they could have a forum for grieving spouse I feel it would be a rewarding place for so many of our members to take and give support to one another.I feel this type support is every bit as important as any other we offer.And SUPPORT is one of the main reasons we are here.

Hopefully there is a way it could be done easily and affordably,mabe by again rewording or revamping the titles of our forums.We are a growing family thanks to Katie and Rick.And with growing families additions and or changes are usually beneficial.

However Katie and Rick decide to address this I would like to ask all of us to respect their integrity and commitment.They have helped all of us so much with all they have done here.

[lilyjohn]

Ginny I agree with you 100%. I too have lost so many of my loved ones. Each is different. Even now I am grieving for my ex husband but nothing can compare to the loss of your true mate. The one person who knows you totaly and completely inside and out. When we lose anyone we love we are deminished but when you lose the person with whom you share your heart and soul, mind and body and hopes and dreams you not only lose a big part of your past but your future as well.

Connie I totaly understand where you are coming from. I know when you say it is time to move on to counciling you have the very best intentions. The truth is that it is just not always possible. It can be a matter of time or money but mostly it is the real understanding that is missing.

Here we can share what can not be shared anywhere else because even after death the stigma attatched to lung cancer still exists. We are set apart we speak a language that no one who has not been there can possibly understand.

One of the biggest needs we have is to have purpose to be needed. Everyone one this board has helped me many times if not by answering my posts then by reading yours. But the ones who really help are the ones who respond and say "those could have been my words" or when I read something ad say the same thing. I joined an on line group of people who lost their mates to cancer soon after Johnny's death. Yes it helped me some but they had no idea where I was coming from because lung cancer is so different.

Not only is it being alone feeling that the world has been jerked out from under you, but it is the things that we went through in the diagnosis process and the months or weeks leading up to the death of our mates. There are so many issues that only those of us who have been or are still there can address. All of those things take a heavy toll. As someone here once said when you lose your mate you are no longer the most important person in someones life.

Our children and siblings grow into their lives. They have spouses of their own and children of their own. They become the most important person in someone elses life and that person in theirs. Yes we are still important to them but they still have dreams of a future. They have someone to share everything with and you no longer do. That is where a grieving for spouses or mates comes in. Each of us can understand what no one else possibly could because they have not been there.

Certainly we all know how important hope is. The last thing we would want to do is take that hope away from anyone. When a person is diagnosed with lung cancer they and everyone close to them has to face their own mortality. The very first thought is about death. You learn as you go that their is hope but in the back of your mind the thought of death is always there.

Each person who comes here has the option of what they will read and respond to. There are many times I come just for the fun things because I have too much on my plate at the time to get into anything else. Other times I go only to the grieving forum because that is where my connection is. That is the one place where I may be of help to someone. I am no longer up to date on treatments and options but I am up to date on grieving and I and I'm sure everyone who has lost their mate needs to feel like what they have been through may help someone else. We have to have a purpose. Without that purpose we are lost.

We come here to give and recieve support. That need does not die when our mate dies. I seriously doubt if it ever ends.

As surely as we love we will grieve sooner or later. Each person grieves differently but each of us also have a lot in common, none more so than those of us who have lost our hopes, dreams and future with the death of the other part of ourselves.

If it is not possible to have a grief forum for those of us who have lost our mates maybe we can find a way to get together through PMs but I suspect even that would not have the same impact, the same sense of filling our needs and helping others to get through the hardest time of their lives.

[Geri]

This is just a thought........it's actually ended up being several!

I joined this board as a survivor, long past my dx and tx. I found support when I needed it, I've made some lasting friendships and lost some people who had become dear to me. I have been encouraged to stay on and give hope to the newly dx even though I can no longer contribute about current tx.

At times this is very difficult for me to be constantly reminded that, for now, I have cheated the grim reaper, that any time I could be called to order with a new tumor. I think more about lung cancer now than I did when I actually had it but I am not complaining nor am I looking for any pats on the back.

I guess my thought it that a new thread for widows/widowers will be no more difficult for newcomers than reading about the newly dx is for survivors. This disease has good endings and bad endings, it's a fact of life that we cannot sugar coat as much as we'd like to.

I'm not expressing myself well today, chemo brain is still alive and well in this house, but no one should be made to feel that they have to look elsewhere for support.

I have been encouraged by these caregivers, they have a wealth of information that my family (or myself) may need in the future, they give their support quickly and willingly and if it's possible to make a new forum just for them I say do it. Let's not lose them and their valued contributions.

This is probably a couple of dollars worth of opinion, thanks for reading my ramblings.

Geri

[Ann]

Ginny...I agree with everything you have said and requested. I think that sometimes people feel that we no longer "fit" into any category here on this board. We are surviving spouses, sons and daughters of people that we have lost to lung cancer. We are also survivors. No...we have not personally felt the cancer grow inside our body but we have spent long nights holding bodies that are filled with lung cancer. We have not personally recieved chemotherapy to fight the disease but we have held the hands of a loved one while the drugs were administered to them. We have not felt the physical pain caused by lung cancer but we have felt the pain of a broken heart, shattered dreams and an entire sense of emptiness from being left behind. We have survived this and now our mission is to help others along this path of pain and loss. I,too, have continued to support this board by making small donations whenever possible. I was a part of this board with Estrea, long ago, when the board was known by a different name. I have often felt the pressure from people to move on from here, now that my life is taking shape again. I believe I belong here to help others along. That help may be in the form of listening, sharing a laugh, asking a question to help us know each other better, playing a word game to take peoples minds off their problems for a few minutes or sharing my experiences with other widows and widowers. We ALL have a place here. This thread started by Ginny is not a negative one. Her thread enabled us to state what we want and need from this board. Thank you, Ginny.

[hollyanne]

Beautifully said Ann.

[hopeandstrength]

I agree. Beautifully said, Ann.

Cathy

[glo]

I'll chip in my nickel's worth here too as a widow. God, who knew how much that word could hurt??

I believe the grieving forum is a good thing, but as to whether there should be a split off into subgroups, that's immaterial to me personally. I'm sure it can work -- I also think we can make it work as is, with a little careful consideration.

I do understand that witnessing the horrid details of our grief can be demoralizing to those struggling to stay positive, but the title of each forum tells you if it's apt to be something you want to read or not. I personally skip reading lots of categories.

I think it is courteous of those of us who are grieving to confine our descriptions of that grief and our requests for help with it to the grieving or obituary forums and confine our posts in General and in Family Members etc. to more positive thoughts. If someone is asking for help in those general forums on the topic of grief or after-death issues, we can merely post a reply something like "I'll start a new thread in the grieving forum to tell you all I know about that". Gives readers a choice to view or not. Ann is a shining example of this - she stays and contributes all kinds of positive help in all the forums.

The only thing in this whole issue that I would REALLY not like to see happen is a grief site established that is separate from lchelp.org with just a link posted. That really does mean "goodbye, we don't need you anymore". And it would certainly not be fair to expect Katie and Rick to establish and maintain a whole new site.

As to whether we should move on and find "another forum like this, but for grieving" - please -- there is not another forum like this anywhere for any subject. People here "get" each other.

As others have pointed out, it's an always evolving website, and there will always be issues to resolve. You can't make everybody happy all the time, but you can make everybody welcome.