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ginnyde

Asking the General Group for an opinion

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HI everyone,

we just got in this evening. we haven't had a chance to read the board thru or answer e-mails or talk with the BOD/Moderators at all, but I saw this post and wanted to reply.

All of your ideas will be considered and with input from the board and administrators, we hope to have a compromise soon.

Just also wanted to add that at no time was this website/board "Lung Cancer Support Community", estreas- or affiliated with her in anyway.

The website "lung cancer survivors for change" was dissolved completely along with any affiliation, before this website was ever created and went live.

Before that short affiliation and before we became a non profit organization, Rick and my website was simply called lchelp.com

Estrea's website still exists at her same web address.

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Dear Katie and Rick Welcome Home and I do hope you had arelaxing vacation. Sorry you had to come back to be met withall this so suddenly but glad you were able to get away for a while and hopefully relax. Welcome Home again.

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I never post much anymore, but I still read and get much from this site. That said, I wanted to repost part of the mission statement of this organization. You can find this on the "home" page of this website.

To provide the best lung cancer center on the web that fosters hope and support for those diagnosed with lung cancer and their families.

I don't think that this organization's mission is to be all things for all people. Someone posted on here that you can't make everyone happy, but you can make everyone "welcome". I totally agree with that. Someone also said that you can't measure grief, and whos to say the grief over losing your spouse is greater or less than the loss of a child?

The managers of this website would have to create a forum in each catagory for spouses, children, partners, friends, etc....just to be fair! right now, the general grief catagory covers everyone.

I think we should even be thankful we even have a grief forum to begin with because no other website has one at ALL. Check ACOR, SLCA, LAF and others. NONE of them have a grieving support section.

My two cents is if everyone can't get along together and post together, then get rid of the grief forum altogether. Just my opinion.

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This is how i personally feel about the subject at hand. I as many of you know just recently lost my Wife of 44 year's and to me and maybe it's my Male instinct but i feel like it is more personal (the grieving). There is not much i want to expose to the rest of the world and i'm pretty confident she is where she belong's. If you all want a Area for widow's and widower's that is ok with me but stop and take a look at what has happened to the participation in the General area after just for the fun of it was started. For some reason that i am unable to explain i felt a loss of involvement due to the change as i liked the way the General section was going untill the Change. Or just look at how little participation goes on in the SCLC section now.

I personally think the Grieving section and Spirituality area cover's or offer's the now discussed widow , widower need's. Just remember this as when i first heard it said i thought it was so cruel but now and since then i've learned the wisdom of these word's just by seeing the result's of action taken as a result. The word's are ANY THING DECIDED ON OR DONE UNDER A EMOTIONAL REASON WILL BE A DISSAPOINTMENT....Now after stating all this i too have chosen to fall back in the Shadow's....Larry

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Here is what I think - I think people who lose a loved one need support just as much as people who are helping and caring for a loved one. I think the idea of subcategories in the greiving forum is a good idea. For this site being a "family" I don't think we should ask any family member who is grieving to leave this site and go somewhere else. I care about the patients, caregiver, widows/widowers and everyone the same. Another grieving forum may not be good for people because here they all know that they lost their spouse to LC and may have more in common and be able to offer more support. I think subcategories under grieving for: Spouses, siblings, parents and friends.

Also how about doing a survey for all in favor that way no names will be shown?

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When Rick was first diagnosed with lung cancer (2/06), I spent many hours searching the web for information on his type of cancer, treatment options, and support groups or message boards. I had so many questions, and things were happening so fast that my head was spinning. Unfortunately, Rick passed away within 2 weeks of his diagnosis, and I hadn't yet found LCSC. I so wish I had found it sooner.

To me, what set this site apart from the others and made me want to join, was how well rounded it seemed to be, and how many caring people posted here. I think there's nothing worse than to ask a question about something so worrisome as lung cancer, or to pour your heart out about your feelings and fears, only to have no one respond. And from what I've seen elsewhere, that seems to happen more often than not. You truly have formed a community here - a community of caring people who understand what we are going through because you all have been there, and you help each other deal with something that most other people have no clue about. That is so important!

If I had found this site when Rick was still alive, I probably would not have read the Grieving or Obit forums. But I was impressed to see that they were here, because to me it meant that everyone here was dedicated to supporting each other through all stages and aspects of lung cancer, of which grieving is a part. I know that I was grieving after hearing Rick's diagnosis, although it was a different sort of grief than what I'm dealing with now.

Since I'm new here, and I only joined after I lost Rick, I've only posted in the Grieving forum. I was looking for a grief support forum when I found LCSC, but I felt that I needed one that was lung cancer specific, and wasn't having much luck finding one. After I posted my first message here, I was overwhelmed by the outpouring of caring and support I recieved (thank you so much). I wasn't aware that grief support wasn't really a part of what LCSC was about, and so I apologize for my misunderstanding. I really don't want to make anyone depressed, dash anyone's hopes, or in any way deter new people from joining because of anything I wrote. I didn't have the time to find you guys here while Rick was still alive, so you didn't get to know me before. I feel I shouldn't really be posting here, since it seems to me now that the Grieving forum is mainly for short term support for long term members.

I truly appreciate the kind and caring replies I recieved. Those words really helped me when I needed it most, and for that I thank you all.

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Sher,

Thank you so much for sharing that with us. I too would have wished you found us before you beloved husband passed. We could have helped you through his transition even if it was short.

You know we are here for you now and always will be as long as you need us.

I could only imagine how difficult this is for you, and I thank you so much for posting and helping others as much as you do.

Peace be with you Sher,

Maryanne

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Sher,

I need to tell you that you are very welcome here..Our grieving forum is for members who need support and understanding during this very difficult time..It doesnt matter if you are a new or a long time member or if you feel a need to stay for a long or short period..

Many of our members that have lost loved ones, moved on right after..Then there are the members like me who cant seem to leave and thats okay too..Grieving for some of us unfortunatly is a part of the LC journey and we are here for you as long as you need us to be...

My dad was my hero, nobody seemed to understand my grief except for the friends that I made here, I hope that you can find that comfort and friendship here as well and begin to heal and find peace..

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"I feel I shouldn't really be posting here, since it seems to me now that the Grieving forum is mainly for short term support for long term members."

As others I'm sure are saying, NO, NO, NO! You articulated so well what makes the LCSC forum different from the others -- and I, too, tried several with virtually no response until some wonderful person directed me to this one. Don't feel that you shouldn't be posting here or in any section of the forum. Grieving, General,

Caregiver -- you've been a caregiver, even though your time in that role was so tragically short. You ARE a member of the lung cancer support community and you belong here!

Ellen

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Sher, please listen to what Ellen, Maryanne and Cathy have said. Grief and loss are part of this journey for many of us, and there is no reason that you should feel uncomfortable about posting here. Please stay......

Karen

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As I read all of the responses here I feel the need to add something more.

Right now as you know I am going through another process of grieving. At the same time I find myself growing. What is happening now in my life is teaching me to move on. I will always grieve for Johnny and everyone who I love that have gone on. It is just that now while trying to help my children and grandchildren cope with the loss of Denis I am realizing something. How can I tell them that they can not let this pain destroy their lives because it is not right and not what Denis would want when I have not learned that myself?

If a forum for spouses or mates were to be formed it would not stop me from going to the grieving forum more than any of the others. Why? Because I don't have the time to go to the others as often as I would want to. I can not welcome each and every new member but I can use what time I do have to go to the grieving forum because that is where most of my experience is. I'm 62 years old and I have been dealing with grief for 32 years! I have lost brothers and both parents and Johnny and now my ex husband. Each and everyone of those deaths have taken their toll. Each and everyone has led me down a path of grief that is different from the others. It doesn't get easier each time. It gets harder but each time I learn more and if sharing what I learn can help one person in a hundred in some small way it helps me.

Grieving is not something you do and get over. Grieving is a life long process that changes over time but it does not end. When someone you love dies they take a part of you with them and they leave a part of themselves with you. You are never the same because your life will never be the same.

I can not understand everyone elses pain. No one can because we are all different, circumstances are all different but if just one experience can get someone through a bad place in the process who am I or anyone else to deny them that?

Cancer is a terrible disease and lung cancer has it's own share of that horror, something that very few if any can understand unless they have been there. We have to be here for one another because there is no one else who can possibly understand the toll that monster takes on a person's life because of the stigma attatched to it and things that the person with cancer and those who love them experience.

We may not always know how to help those who are still fighting but we can and should help those who will always feel the loss of not only a loved one but the innocence or maybe I should say ignorance of bliss we lived it before being touched by lung cancer.

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Thank you for clearing that up for me. I just haven't been thinking straight lately, so I seem to be easily confused these days. (well, more easily confused than usual :wink: ) Thanks for making me feel so welcome!

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Wow! I have been checking in only once in a while and was surprised to see this thread.

I became very very attached to this site when we learned of Tim's dilema with the disease. I think I would check in more often if Ginny's idea came to fruition. Just my thoughts on it.

Cyndy

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In the few months that I have been coming to this site my heart has been touched in ways that I never imagined would happen when I came searching for a lung cancer forum. The people who participate here are generous of spirit, and they are generous of heart, this despite their own burdens and sorrows. We give and we take here; in the taking our fears can be made less frightening, our confusion unraveled and our sorrows lifted. We can bask in the warmth of the kindness found here and be renewed so that we may get through another moment, another day. It saddens me to think that a member might suddenly feel *disenfranchised* from the site when their loved one has passed on. There may not be another time when they need us or each other more. If it is possible to add another forum category or reconfigure what is already available, perhaps something that is more inclusive, such as, "coping with the loss of a loved one from lung cancer" might be the best way to accommodate any and all who so need to continue to receive what this board gives the best; love, support, encouragement and hope for another day.

Lynda

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Beautifully stated, Lynda.

I would like to comment on those who feel that the grieving forum is a big negative for newcomers to read. I joined this board quite some time ago, when there were more patients than caregivers and some real characters. When I came here, I had been reading the odds and knew all the bad things that I was up against. Here, I found people who knew what "treatment" and the "mind trip" were and helped me to work through all those thoughts. I was already past radiation side effects when I logged in here and was experiencing some extreme side effects from Iressa.

Through my tenure here, I have lost MANY friends. THAT is far more disheartening to me than the caregivers who are still here and grieving a loss far deeper than anything I have over a user name that no longer pops up on my screen. I've met some wonderful friends here - and lost them. Mo_Sugar and I discussed shoe shopping, Bobmc and David A in the chat room with discussions of kids and pet birds, Fay A and Addie with their good sense, T-bone and his rocking sense of humor, DeanCarl with his soothing tones and presence, BeckyG, David C, Beth/Justakid...and oh, so many more!

My fellow warriors have a reason to no longer post on the board, it's really sad to see a family member disappear. Curtis is gone, Angie - daughter of Bill, most of T-bone's clan, Norme... Where are they? Why did they leave? Did they work through the grief and get on with life, or did they feel they weren't welcome here where their loved ones' aura is still bright and tangible because of the sadness they exhibited?

I want to know that if I die, my husband will have some place to go to talk to people who "knew" me, people to gently help him walk a walk he never planned and doesn't want to take.

Unfortunately, death is a big part of this disease. Helping those left behind to work through their grief is a worthwhile cause. For the caregivers/loved ones/family members, the battle does not stop with death - the real battle has just begun. I'm fighting demons and getting support when I need it - who can say that the demons a widow/widower face are any less than the monsters under my bed?

People who are bothered by the thought of possible death can just not read the forum that is for supporting those who have lost their loved ones, but I think there should be someplace for that information to be, it's yet another side trip on this journey and necessary to help those who have helped all of us so much through their love and support in the face of extreme adversity and while their own hearts were breaking.

Love to you all,

Becky

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I'm not sure how the issue went from creating a separate grieving forum for widows- to the importance or elimination of our Grieving Forum altogether. Eliminating the Grieving Forum has never been a consideration in the past.

P.S. Becky, I had corresponded with Norme when she left, I know that for her own grieving process, she couldn't be here and be reminded of lung cancer and her loss, she left so that she could heal- the same for SAM's wife shirley and many others. I haven't kept in touch with T-Bones clan to know why they don't post, maybe for the same reason. Alot of people just deal with their grief differently. Some people feel comfortable posting about and during their grief, and others just don't.

Thru much discussion with BOD and volunteers, we feel like it is the right time in this thread to post a response from Lung Cancer Support Community. I am also going to lock this thread as it is incredibly long. Anyone/everyone is welcome to begin a new thread or PM me for any reason.

This idea of a separate grieving forum for widows is something we have considered very carefully.

Even though many of these widows are members I consider my dear friends, what we have concluded is to keep the website AS-IS with the current grieving forum we have had since the conception of this website.

We try very hard to maintain our mission statement. As much as we wish was possible, LCSC cannot be all things for all people and we can’t (no matter how hard we may try) make everyone happy.

If we added a section simply for widows, we must extend the same courtesy, effort and time to include children, partners, siblings and friends.

Currently, the website forums are designed to generally welcome everyone, and it generally supports everyone. We do not separate or segregate them. Aside from individual cancer type forums and the survivor and caregiver forums, we have the general grieving, spiritual forum that encompasses all faiths and the grieving forum for everyone who may be grieving.

We have also researched other LC websites and find that they do not provide a grieving forum at all. We considered briefly removing the grieving forum altogether, but reconsidered because we do feel it is an intrigal part of this website and always has been since day one.

We do feel that we offer a well-rounded website that supports and encourages survivors to survive, and generally takes anyone from diagnosis thru grieving.

What members make of what we offer is completely up to them and their level of comfort and participation.

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