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Posted

I am grieving over the fact that people that I know on this board could care less what happens to me. Just because my husband is passionate and concerned for my well being and said a few things2 years ago that offended some on this board, I have been tossed to the side by you members. I tried to start back posting to offer my many experiences thinking maybe it would help someone, but have found that this board continues to hold a grudge against me and my husband. Just recently I received a PM from a longtime member snidely asking me why I still post, meaning the members don't want me posting anymore. I tried to tell her the reason, and that reason is that I have cancer. The lady that posted the e-mail was a caregiver and not one who has been stricken by this disease. My post was erased. I still have cancer and it's getting worse. The God I pray to would look down on me if I were to continue to hold grudges as you members have here. I posted over 1500 posts on this board during the 2 years I was a member. All of those have been erased by management, as this one probably will as well. People that claim to be straight up Christians, feel they need no longer care what happens to me. That truly hurts. I am sorry that my husband said something to a Dr. on this board that made him mad enough to quit. Seems to me, the Dr. at that time was getting tired of answering the plethora of questions and was searching for a way out anyway... He left by blaming my husband and has not spoken a word on this board since. I would only think that this particular Dr. will face many situations like this from concerned patients and caregivers. I guess he will simply do the same thing and run away. I have met people on this board, taken some to dinner, donated to this website and offered many may hours of support, only to be thrown to the side. I am ashamed of the people on this board that knew me and communicated with me over the years that absolutly ignore me now. I have done nothing to you and you refuse to offer support. I am the kind that stands beside someone, even if it isn't politically correct.

I certainly get the message now. I will do all of you a great favor by leaving this board and never returning. I honestly hope that no one else has to experience cancer and then seek support from a board like this, only to find that he/she can easily, and with no conscience, be pushed to the side and forgotten... for any reason.

Cheryl

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Posted

(((Cheryl)))

I am so sorry you feel this way, please don't leave! To be honest I'm not up to date on your circumstances, but if you have gotten some negative responses from some please don't think it is the thoughts of all of us.

In a way I do understand, when my husband was fighting this terrible disease, I spoke my mind, I had to, I was his wife, his strongest advocate, it didn't matter, I had to speak, if some didn't understand, so be it, I couldn't worry about the "petty things", this was so much greater.

please don't leave...

Grace

(PM me at any time!)

Posted

Dear Cheryl,

I honestly do not think the majority of us feel that way and I am so sorry that you received that e-mail.However, that was only one person's thoughts

As a matter of fact when you originally left us, many many people wondered about your well being.

I cannot say I agreed with how angry your husband got at the Dr. who I believe was trying to be helpful,and he also sent some nasty P.M.s to people as well but that has nothing to do with how people felt about you and your well being

Please continue to post. You continue to be in my thoughts and I am praying that you will beat this cancer.

Posted

I am a caregiver, and feel badly that you have felt this way. I can only imagine what you have been through and know that I am here if you need to talk. I don't know the circumstances, but will be here.

Posted

Thank you for your kind words Grace, and am sorry for your loss. Be proud that you were a super caregiver and did what you could for Carlton, even if it you had to do and say some things that you normally wouldn't have to. I would have not made it this far had it not been for Jack.

Eileen, The PM I got recently from the longtime member was one, yes. When the incident happened with the Dr., our inbox was blasted by many longtime members, who said some very nasty things that my husband wouldn't even write down. The fact that these members are still on the board today, saying basically any and everything they desire, baffles me. Not one person has ever asked us for our explanation, we were simply dropped. That's what hurts. I wish I could thank you for your message, but again, it appears that more mud is being thrown on my husband. Though you admit it doesn't have anything to do with me, you put it out there as to justify members behavior. Nothing gets mentioned about the horrific PMs we got, because we were no longer allowed access to the board to explain. The change over to Lungevity is the reason I was able to get the ban lifted in the first place. I joined this board originally in 2003, I never suspected any of this would happen, but it did.

Grace, Our PM capabilities are blocked so I cannot PM you. Thank you so much for offering.

I would like to add. The original disagreement with the former doc started when my husband asked him why Brain MRI's weren't done on a more regular basis. I had just been diagnosed with Brain Mets and hadn't had a brain MRI in over 18 months. That dr. replied by saying it wasn't cost effective, which didn't settle right with my husband. We had the money and good insurance for the MRI but simply didn't know to ask. Had we known then, we would have demanded one much earlier. I will say that I have read many posts by your new Dr. West and must say that I am very impressed with his handling of all questions. He doesn't seem like he is the type tp quit on his patients.

Cheryl

Posted

Cheryl, I am a long time member. I was a caregiver. I well remember the incident you describe. It is only by the grace of God that anyone of us do not offend others everytime we post. This site is intended to be a sanctuary for those touched by this horrendous disease. And during this torturous journey, we can not be expected to be politically correct all the time. I know that I would have fought like a mama tiger if I thought it would have helped Earl.

Please do not leave us. I know you have valuable information for others and I hope we can offer you some hope and support. I am sorry that someone can not forgive and forget. As is so poignantly obvious at this site that life is often short, so let us support each other.

Posted

It sounds as if you have had a rough go of it. I am sorry for your troubles. Hopefully letting it out here on the grieving board has made you feel better, and you can concentrate on your treatment and healing.

Prayers for you and your family.

Posted

Ginny, you did fight like a "Mama Tiger" for Earl and I remember your long and hard journey. Thanks for your kind words. Words that I would have liked to have said, but couldn't quite put it the way you just did.

Thank you,

Cheryl

Posted

Cheryl,

I know nothing of what happened in the past, but I do want to tell you that I support you in your fight against this disease. I hope so much that you will stay. There are many, many here who simply come to offer support, and I am one of them.

Stay strong and know there are many, many out there for you.

Jen

Posted

I am very sorry that you have had a bad experience here. This is such a supportive place. I do not know of the circumstance that you had here, but I do wish you well.

Carol

Posted

Hi Cheryl

I rarely post these days, but I second everything that Ginny said. I too, would have done absolutely anything to help my Mum, and can clearly recall the utter despair and heartache that accompanied unfavourable scans and test results. I would like to think that the membership of this board is capable of understanding and forgiving the emotional outbursts of a man terrified of losing his wife. I hope you decide to keep posting, and I am sure that the great majority of people on this board would encourage you to do so.

Karen

Posted

Cheryl,

I'm sorry you have been hurt. I'll never understand why people go out of their way to hurt one another. This board is about supporting one another and helping when and if we can. In my opinion, there just isn't room for unkind words. Hope you will stay with us. May God Bless you.

Sue

Posted

I am not justifying people sending you nasty e-mails or nor am I speaking for anyone else at all. I honestly just stated my feelings about the situation.

I do not think anyone should be writing nasty e-mails to anyone

I am truly sorry if I brought back the hurt; that was not my intention at all.

I do hope you stay and wish you nothing but the best in your struggle.

Posted

Cheryl,

I was only just beginning to post when the incident you described happened, but I know that I was glad to see you back and posting again, glad to hear that you were (are!) still fighting. Know that the sentiments of this one person are not the sentiments of all of us. I know I would be sad to see you go again.

Posted

Peace and Comfort to you. I hope you'll stay with us and offer your insight and support to those that can benefit from your experience. And I hope you'll be able to ask for support or comfort when you need it.

I'm sorry you feel so alone and so hurt.

Posted

Cheryl,

I don't know what happened, but it makes no difference.....

As Connie said no one should have to feel so alone and hurt. Especially on top of what you are already dealing with.

I'm glad you posted and I hope you will continue to come here often!

Posted

Cheryl-

We're all a family here and like any family we have our crazy aunts, uncles, and busy bodies. No matter what happened with Jack, we never blamed you, and we never, ever stopped caring about you. When you were gone there were many messages wondering how you were and looking for you. When you came back, you were welcomed. I hope you stay - don't ever think we tossed you aside.

Rochelle

Posted

Hi Cheryl! I was very happy to see you back on the boards when you returned. I'm sorry if I missed any posts because I would certainly reply. I never forgot you when you were away and I don't want you to think you are forgotten or not cared about!

Guest Kaylei
Posted

Cheryl!!!!!!!! I hope you know that I think the world of you! I haven't known you long but you have helped me in so many ways answering so many questions via email about brain mets and many other things. I think you are one amazing woman and one of the most outstanding lung cancer survivorsI have ever had the honor to talk to! I hope things do work out well here. I'm staying in touch regardless, you know that. I'll just bug you with emails!

But with all my heart I hope you post here. You have given me so much support. Bless your heart, I hope you find it given in return. I"m here for you!

Posted

Cheryl

I have also been around a LONG time and I remember the incident well. I am sorry for what happened to you. I agree with the others.. nasty PM's are never, ever justified. I've received some myself in the past, now I mostly read messages and don't post much. However, I feel like if I really have something to add I will. This is a tricky place sometimes and even though I've been here a long time I don't always feel like I fit in.

I just want you to know that I have thought and prayed for you many times and wondered how you were. I know that you were quite ill when you quit posting and many were very worried about you. As far as continuing to post, I hope you do. You have such a wealth of information that you can share with the "newbies" and also many people here who do careabout you and want to help you through the rough times.

Continued prayers for both you and your husband..

Tami

Posted

((Cheryl))

WOW! This is news to me... I am so sorry you are feeling the way you do. I hope you decide to stay.

We need you!!

God's peace!

Jamie

Posted

Cheryl, I have already lost my wife to this disease. I can probably relate to hubbys reaction and feeling s at time. The past is behnd us now. I do not know what happened nor do I care. I do care about every one here right now and those that continue on> I alspo thank you whole heartedly for your Participationin the trial program. For that I applaud you and know that you are a Pioneer in this fielsd of research. Stick around, HAte to see someone leave because of Past incident. Prayers and hugs to you and family a this time.

Posted

Cheryl, I never once stopped caring about you. I often went to search out other boards to see how you were doing. I was thrilled when you came back here and updated us with your progress.

I hope you decide to keep posting and offer and receive suppport. We DO care about you.

Posted

Cheryl,

Always cared about you and Jack. Sad these things happen, that's why I don't post as much any more, I can't deal with the games and gossip. I am not perfect, but I am sincere. Don't mean anything harmful or hateful to anyone. I have enough to deal with just want to be happy and get well.

Cheryl and Jack you are in my prayers every day!!!!I am and still am soooo happy to see you posting and sharing your experiences with others, oh if only they would hear what our experiences have been and what we have endured, we just want to share so that it may help others..

Diagnosed March 2003

TWO brain surgeries and Cyberknife, now spine met and treatment at Stanford (cyberknife)....

Love Ya!!!

Woman of Faith

Karen

Posted

Cheryl,

I wasn't here when this incident occurred. Just wanted to let you know that you have my support and love. This disease is too big to fight alone so please don't go away. You have much to offer those of us still deep in battle, as well as a need for support for yourself. I am sorry that another member would be so uncaring as to pm and ask you why you are still posting. I wonder why they are still posting, because apparently they are not trying to help and support another human being affected by lung cancer. Anyway please don't let the ignorance of others dictate your actions. There are plenty of rational, kind, and loving people on this board who do care about what happens to you. I am one of them.

God Bless,

Sharon

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