THANKS FOR NOTHING? THANKS FOR EVERYTHING!!!!

[JohnSis]

Hello again, WOW What an experience. When I logged on to this site for the first time, I had been stewing in a world of confusion, fear, pain, frustration, sorrow, helplessness, but most of all ignorance for over 48 hours. I am single and do not have a significant other. I was alone, I was praying, for clarity. Then here I was. I know God lead me here. I am sorry for posting my anger and frustraion out here. And even sorrier to those who thought it was directed at them, or this group directly, hardly. I was not doing well. I would never write anything to hurt someone on purpose. I was more angry at cancer than anything, and most of you realized it. I call you my Angels now. Bruce when I read "I know how you feel", I knew that you really did, Shirleyb everything you wrote was helpful and loving, Rich-dadstimeon, what a guy, very cool, SharonR you are a very smart woman, your ego is in tact, you knew it wasn't about you, and didn't let me get away, Peggy-stand4hope, another beautiful soul who knew I needed to be here, CindyRN made sure to post again also, expressing your concern, Jamie I hear you, and KatieB you are beautiful inside and out, you are an inspiration, your compassion, intelligence, also swept me off my feet. I am so grateful for this group of Angels who were able to see clearly I needed to be here, but maybe I was afraid of what I was going to find out. Whatever caused you to write to me the second time and calm my fears came from above, I believe He sent you after me because I was running. If all of your respnses would've been like DavidC, Fay, DavidP, Frank, ChloesMom, J.C., Elaine, I would never of returned, but then again if that would've beeen the only kind of response I got, I doubt this forum would exist. Just for the record I never once even for a second thought about shaming my brother for smoking. No perception involved there J.C. and Elaine, maybe that's an issue of yours, but not mine. The only reason I stated it was because I had noticed under everyones names it said smoker or non-smoker, that was only one of the few facts I did have to tell you. DavidC took time out to take my inventory 3 times, no it's not a hotline, it's better. You see I belong to a forum quite similar to this. Since 2001 I have been a member of an ostomy forum. Very much the same, and also totally different. I could never presume to know what or who a person is by what they wrote in a time of crisis. You intentionally tried to hurt me 3 times? I will pray for you.

Back to the beautiful, loving responses, wow thank you Betty, Becky-Snowflake , Rochelle-Ry,Bill, Cathy, Laurie, Addie,Ginny-Ginnnyd, Paddy, Don Wood, Ellen, and Lamb Last. You are all angels sent to help me and show me compassion and love. I am a strong believer in God and I know all of you were sent to give me the words that came out. Because first of all I am no longer a mess, and through all of the info and suggestions you gave me, everything is as good as it could possibly get. I can't believe it. I wanted fast action, I got it. I didn't respond sooner because after I put together the information, and really understood, so much more, I called my SIL and told her I would never come there unannounced. She said she didn't mean to be mean but that it was his wish that I not drive the distance. But if I was coming he would love to see me. I also shared many of My Angels' posts with her, she was really impressed. I made sure to tell her that I will be available at any time to help with anything, I have my own place to stay, and no longer feel like my brother was given a death notice. I expressed to her how we have to have hope, and be positive about his cancer. Then she confided that she wasn't hopeful at all, and that she told my nephew to come home because she feels he will be dead within the next 3 to 4 months. If I wouldn't of read so many of your profiles I would'nt of said anything. But I told her everyone is different people go into remission, maybe not for 10 years but 6 months even would be more than she is anticipating. I told her to try to keep positive for him, and for herself that she has to take care of herself also. She told me she would love to have me come stay and help her. I could've never known to say any of that if it weren't for My Angels. You all spread some real hope, I also told her how guilt is a big part of this dx. She couldn't believe it. So that is all fine for now.

He was dx 4 weeks ago, I have learned some of this but not sure about the latter part. My SIL said his dx was small cell 4th stage something about an "OAT", it is in some lymph nodes none to brain. She said she would write it down from the paper. Maybe you all can get an idea from this. She said it's almost the worst that you can have. I told her we aren't sure of that yet. Was I right? I hope so. I have also got my letter that many of you suggested I write, my SIL thought that was a great idea. So I can never repay you all for the love and concern you have shown me, not to mention the knowledge to allow me to be a positive part of this situation. I will keep you informed. You are all in my prayers. God Bless "My Angels", and everyone on this forum.

[Ry]

Oh good! I am so glad you are doing better and got a few answers. I am guessing from what you said that your brother has non-small cell lung cancer stage 4.

I hope your brother and SIL will visit the site also. Hang in there and keep updating us.

Rochelle

[dadstimeon]

Glad your back and your spirits are better. Hang in there. Peace, take care and God Bless. Rich

[Angie Daughter of Bill]

Glad you decided to return. I know that desperate, helpless feeling that you felt. I know the anger that cancer brings upon us. I had all of that when I first signed on here. Most of all, I had fear. Fear of the unknown. Thanks to this wonderful group of people, I now carry hope with me. Does the fear and anger ever sneak up on me? You bet it does. When it does, I come here and post my fears. These guys ALWAYS make me feel better! I am glad that you are feeling better. Please stick around. You will find much comfort here. Praying for you and your brother.

Angie

[ginnyde]

Glad you came back. Yes, the initial feelings after a loved one has be dx'd are tough. Does it get easier, no. But you begin to be able to function with the 'new normal'.

Does your SIL have internet access? Have you told her how to get here?

We are here to support and care for each other, and to answer the questions we each have.

[Addie]

It sounds like you're getting a much better handle on what is always such emotional news. I'm glad. The fact that you communicated with your SIL and were able to encourage her to have hope will be enormously helpful for all of you.

You mentioned "oat" and oat cell is another name for small cell lung cancer....but it is usually only staged as limited or extensive. If it is only in the lymph nodes in his chest...it's possible this is limited stage. Has he had tests aside from the brain to try to determine this? If your SIL said it's almost the worst you can have....it may be that there are mets outside of the chest...but perhaps she thinks it's the worst because small cell is an aggressive cancer. The thing to remember though...is that because it is aggressive, it also is very responsive to chemo and radiation!!

Just keep reminding her AND yourself that no situation is without hope! A strong, positive and hopeful attitude is great medicine and I believe it even helps one cope better with treatment, so I hope your brother finds and hangs on to some real hope as well. You've got to enjoy the good days in order to offset the days that aren't so good. Living with cancer doesn't mean it's the ONLY thing in life. It's just a part of the overall and it's really important, I think, to try to remember that and enjoy all the other aspects of life as much as possible.

Good luck...and do keep us posted. I'm glad things seem a little less panicky right now and you'll be able to find lots of good information here that will also be helpful to your brother and SIL.

[sharyn]

I am so glad that you have given us a chance!!! What you really must remember is that as others have said it does sound like Stage IV cancer, BUT and a big BUT.... don't let anyone tell you "its the worse" or "he has only limited time" etc. EVERYONE is different and responds differently and personally, any doctor who told me that would be on my S---list and I would go look for a second opinion. God Bless you on your journey, it is just beginning, but we will be here for you all the way through it. Tell your SIL to come and visit too!! Love, Sharon

[Fay A.]

Oat cell is another name for Small Cell Carcinoma. Having a diagnosis of cancer is bad and not something any of us would wish on anyone. But it isn't a hopeless diagnosis, either.

I have gone back and re-read my response to you, Janet. And I stand by the things I said. I knew you were in a very bad place. But I was trying to make you understand that it was possible that your sister in law and your brother might be unable to handle supporting you at this time. I did this because I was in a similar position not too long ago. I wanted you to know that sometimes those of us who have the disease cannot handle the intense emotions of others. It was all I could do to keep my kids up when I was first diagnosed.

I'm glad you were able to approach your sister in law from a supportive position once you calmed down. I hope that you will go back and re-read the responses. I don't need to be one of your Angels, Janet. But I'm no demon and I won't let you paint me that way.

At any rate, I am glad that you returned to this board. It's a blessing for all of us.

[Elaine]

John's Sis

I, too stand by my post, though I do apologize if I am wrong abut you, in particular. I am right about anyone who would throw smoking up in a patient's face.

I see you chose to ignore my first post. And I also see that you went on to do some more judging of people's posts who you did not like (including mine). If you re-read my supposed hurtful post, you will see that it doesn't directly accuse you. It says you, as a judgemental person, based on your post accusing the board of being awful, might be someone who would do what I said some might do.

You took a lot of time to again throw judgements at specific people, publicly, instead of contacting us privately. I am glad you found people to support you here, as I told you you would.

I am also no demon and don't need to be your angel.

Those of us with the disease also have our ups and downs, not just distant family members and caregivers. We are, after all, the ones with the DX.

I also don't think that most people put whether they smoked or not in their profile.

elaine

[Remembering Dave]

Janet,

I must tell you I am very glad that you have calmed down, got more information, and came back.

I wasn't trying to condemn you at all, I see you mention David C's post several times (but this is Karen, not David . . . poor guy, don't want to stick him for this one!). I just wanted you to see how unfair you were being to take your frustrations out on these good people. And I think you saw that! I, like Fay, stand by what I said. And I'm glad you're back. And yes, I am a very devout Christian myself. I prayed for you several times a day over the weekend. I hate playing tough love but sometimes I think it's necessary. Who knows, maybe some of my prayer was answered. But I'm glad you're doing better, and you have a better handle on what's going on.

I am getting a little chuckle because I got some PM's from folks thanking me for what I said - and those are the folks you call an angel here! I think we're all angels, just some of us are in disguise . . . sometimes hearing what we don't want to hear is what we need . . .

Are your brother and his wife on the internet? If so, please invite them to this website. They will find alot of things clarified I think. It sounds like he maybe has extensive small cell lung cancer. It's not good, but small cell responds very very well to chemo and radiation - so they should look at it as an immediate death sentence. People can and do live with extensive stage SCLC. My husband has/had small cell limited, but it was just about to spread to his lymph nodes - who knows, it may have, he had quite a large tumor ON his lymph nodes - but he was cancer free after his treatment and one year later remains cancer free. We are here to offer your family HOPE.

Hang in there and keep us updated.

God Bless,

Karen C.

[Snowflake]

Janet,

I am no angel. In fact, I stepped away from the "Thanks for nothing" post because I was too upset to deal with it. After a heated exchange a couple of weeks ago with another board member where I ALSO held back some of my feelings and didn't post in my own defense, I've learned that sometimes just walking away is a good coping mechanism for me.

I am glad you decided to stay, but feel the need to say that many you listed as "demons" are some of the strongest cheerleaders on this board. They are MY angels, my friends and my traveling companions on this horrible journey we've all been thrown into... In fact, most of those that gave you the more "negative" responses are actual patients who have dealt with it from the other side of the bedrail. Their insight should be something for you to hold near and dear, they have much to offer for the caregiver/family/friend of a cancer patient, as many of the patients do NOT talk. Elaine and Fay ESPECIALLY are very good communicators and candid about their feelings.

Please don't separate the board into good and evil, we are all just people, dealing with some cold spinach on the Plate of Life. Some choke it down, some throw it out and some try to hide it under the mashed potatoes...but we ALL have to deal with it somehow.

I wish you all the best,

Becky

[natalie]

Hi John's sis,

I just logged on, since I don't check the boards on the weekend...I'm so sorry to hear of your situation. I have some advice or feedback from an only daughter's point of view.

When my mom was sick, it was just me and my Dad to take care of my mom locally. I had two aunts that divided up their time and would fly out to help us take care of my mom by cooking well balanced meals, take her to a couple of appointments, take her shopping...it also gave my mom some different people to talk to and look at. I can't tell you what an enormous help it was to have someone come just to clean, cook, help around the house. It will also assist your sister in law greatly if she's in a position where she has to go to work. I'd say that the first month was extremely overwhelming. It took us some time to get over the shock and figure out how we were going to handle finances, deliver the news of my mother's diagnosis, researching all avenues of treatment...we kind of ignored the rest of the family for a while because we honestly barely found the time or the emotional energy. We would hear people gasp and say "oh my" or "is she going to make it?"...then hear them cry or react. It is an extremely painful process to have to relive it with everyone. Your brother and sister in law are not themselves right now, I can vouch for that...please do not take it personal. I have an aunt that took it very personal and it hurts now because she doesn't want to have anything to do with me. I don't have a mom now, so my aunts are that much more important to me emotionally, but she has written me off. Based on my experience, my advice would be to wait a month and then call them to say that you'd like to help...ask your sister in law to come up with a list. It would probably also help them tremendously to come by yourself. I had a family member bring their kids and it just made it more difficult for us because we had to make sure the kids were entertained. There was no emotional energy for that. I felt for once that I could relax just a little bit when we had someone to cook. It's so emotionally draining to go to doctor's appointments, call all the family to give weekly updates, make sure your family member needs are met, that there's no energy to clean or make dinner. I hope that I haven't offended...this is just to give you some advice....it's a very difficult time for everyone and you are probably feeling pretty left out. I doubt they are doing it intentionally. It's a life changing event as I'm sure you are experiencing, but your sister in law's daily life has changed. She probably is in a trance right now.

Keep us posted. I wish you the best.

[DeanCarl]

Janet,

I'm VERY glad you've returned and very glad you've found some folks here you can relate to and get the support you need from. That's what this place is all about.

I did not respond to your first posts mainly because, by the time I saw it, you'd already recieved better advice and information that I could have given you.

And yes, all of us have, at times recieved the wonderful love and support of these great folks. But there is another gift I get here also. The gift of honesty. A gift that is, unfortunately, often in short supply and one we all need. It can be a gift that is hard to recieve at times especially if it's something I may not really want to hear. But it just might be THE most important thing I hear all day.

I very much hope you stay with us. And, if you do, I think you'll find the folks you, at first, felt were a bit harsh or unsensitve just might be the best support you could ever find. It's been that way for me. The person I disagreed with the most when I first got here is now one of the best friends I have.

Changing subjects: As others have said, "Oat Cell" is simply another name for Small Cell. The bad news about that is that it is the most agressive of the types of LC. But the GOOD news is that SCLC is the most responsive to chemo. So you are right. The dx was NOT a death sentance. Here is praying you brother responds well to treatment and we hear a TON of good news in the following weeks, months ... yes, even years.

Dean

[mhutch1366]

Dear JohnSis,

I am glad you have a clearer channel of communication with your SIL. I bet that puts both your minds at greater ease.

I'm very sorry your brother has cancer, and that you are in need of this board. Welcome to the club no one wants to belong to.

But now that we're here.....

When you're rested and in a positive frame of mind, go back and reread the posts that upset you the first time. I feel a knee-jerk emotional response coming through your post, not a thoughtful rational one. And who would be expected to be thoughtful and rational when cancer strikes a family? No one. I was an emotional basket case. I doubt anyone here could claim to have not been shook by the news.

As an aside, Becky, I LOVE the spinach ( cold ) analogy. Tell you what, cold spinach is easier to deal with than cold creamed spinach or cold creamed corn ( my mom's favorite instruments of torture when I was small).

JohnSis, please know that no one here would intentionally cause you pain. Before you stand a diverse bunch of people of enormous personal integrity who tend to be rather blunt and outspoken. The other 85% don't post, they mostly lurk. Not sure why.

So know that we welcome you, and are happy to be supportive of you and your family however we can.

XOXOXOX

Prayers, always,

MaryAnn

[J.C.]

I stand by the things I said.

I don't want to be one of your Angels.

I am what I am and what life made me.

I won't accept to be put on the side of the demons as I am not one.

J.C.

[Frank Lamb]

Janet,I truly am glad that you got a positive response from your brother and SIL.I'm also sure that in the upcoming battle w/cancer all of you working and fighting together will strengthen the bond.The up side is that your brothers cancer has a history of responding well to chemo & radiation.Thank you for giving the members another chance.I didn't intentionally mean to offend you,I made a too hasty decision to defend a lot of people on this board who have been a great big help to me in my own battle with this disease.I'm also not sure if I am an angel or a demon as you have me listed once as each.Like Dean Carl stated I am one of the say it as it is people.I sincerely wish you and your family only the very best on the upcoming journey.As you hopefully get to know some of us better and realize how long it took me to type this(don't know how to type)I hope you realize I am talking from my heart.

SINCERELY,

Frank Lamb

[Cindy RN]

Dear Sis---The oat-is what they used to call small cell, oat cell carcinoma. Currently medical people call it small cell. It is the most agressive of these types. It does respond to chemo fast tho. If caught early-one node or one tumer they can sometimes remove it. Ususally it has spread to several places before it is discovered. I was told 1-2 yrs with treatment if I was lucky. Here it is 3 1/2 yrs later and I am still puttin around. There are some success stories and you will find them on these boards.

Also we play nice here. If you have a problem on these boards it is best to pm that person so it stays private. Just a suggestion.

love cindy

[karenl]

Hi Janet

I'm glad you are feeling better about things. A cancer diagnosis is one of the most difficult things you are likely to face in this lifetime, and it can lead to alot of anger and frustration. However, while cancer is an explanation for this anger, it is not an excuse for throwing hurtful comments at members of this board. Everyone here either has cancer, or, like you, loves someone with cancer. We come here for one reason - to give and receive support.

Welcome, and I hope that you stick around long enough to appreciate the wonderful and supportive environment that has been created on this message board.

Karen

[Remembering Dave]

My quote:

"It's not good, but small cell responds very very well to chemo and radiation - so they should look at it as an immediate death sentence."

I meant to say "so they SHOULD NOT look at it as an immediate death sentence.

Also, please know I am quite serious about my faith and my Christianity. I firmly believe that prayer - lots and lots of prayer - given up for Dave from all over the world, literally - had alot to do with saving Dave and removing the cancer from his body, along with the God-given genius of the medical community. I would never ever try to use my faith as a weapon or insinuate it as such. When I say I am praying for someone I am.

God Bless us all,

Karen C.