WARNING: INNER THOUGHTS, WHO AM I NOW--Just a body?

[Elaine]

I hope I don't get booed off of the board for posting this, but I am going to do it anyway.

Tonight, our power went out for a couple hours, and I was alone in the dark, with no tv, computer, no lights--plus, I left my phone off the charger, so no phone.

I was beside myself. No one else home. I was alone--alone with my cancer. It was unbearable. All I could do was think about my body, and what was going on inside it. How foreign my own body seemed. I did things like make a mental note of places that ached, and it dawned on me, I ache everywhere--and I don't yet have what I would call "pain." I just don't feel like me, physically, emotionally, mentally or spiritually.

I am not me, anymore. I am a stranger to myself most of the time. Only brief moments do I recognize the "me" that I was.

And once I realize I am being me, I quickly feel an awful loss and sadness. I hope this doesn't sound self-centered because it isn't really, because I think of "me" and the "not me" as I do or do not relate to those people and things I care about.

Pls don't tell me I need more meds. I have meds. They have little, if anything to do with this. I am quite aware I am depressed, but this is more than that, and meds aren't going to bring "me" back. The "best" I could hope for with meds is complete unawareness and who wants that??? Not either one of "me."

I realized tonight, that I will do anything I can to keep the thoughts that I had tonight from surfacing. Until there was nothing to do.....

I am not telling all my thoughts, but it did dawn on me that I know a whole lot about what caregivers on the board think and feel, and very little about what, we, as patients think and feel--outside of how they felt given the results or anticipation of one test or another.

I am not criticizing anyone. I just find it so hard to know if what I am feeling or thinking is normal or have I lost myself off of some deep end.

Too often, I feel caught between hopelessness and denial. Swinging back and forth. I looked and looked at all the different forums and I could not find a place to put this post. Much of what I think or feel doesn't fit anywhere.

I post this also because I got a very tearful private email from another member who hasn't posted much and has stopped. She said she stopped because she knows she is going to lose the battle--probably soon, and no one would call her an "inspiration"--she says she has yet to get "good news"--nothing is working for her. She cries and is frightened etc. People will think she is a loser or has a "bad attitude" because her body seems to be succombing to the cancer.

I talked to my Dr about stage IV and not all Stage IVs are the same. Depends on the agressiveness of the particular tumor. It depends where and when one became Stage IV in your diagnosis--. It depends on if you have BAC or not. It depends on where the damn cancer cells decided to take up residence in their oh so squatter ways. It depends on a lot. I don't know how much attitude matters, though it probably matters some.

I don't think I am all so great, and if what my Dr said initially was true, I would be bedridden or at least on oxygen and doped up by now. I take mega supplements and that is all. None of the chemos there are available now, are curative. I will have to post on why I don't do chemo another time, (there are many reasons). And I may do chemo in the future, depending on what the disease, itself, does to me. But I think there are many factors at play at why I am not bedridden.

What I am trying to say is this: None of us has the same disease--regardless of the type of cancer we have. None of us get the same chemo even when the name of the chemo is the same. Our bodies are different. Our tumors are different. The doses we get are different. My supplements are different than any one elses' even if we take the same thing.

I applaud all of us.

It just feels not right to treat what is happening to us as completely a physical thing or the old American heroic, stoic and religious thing. We are more than bodies and prayers, I think.

I read about how it feels to grieve the loss of a loved one. I, too, have lost loved ones--both parents.

The thing about us "survivors" is that we do our grieving of those we love now, while we are alive, I think. We feel that pain now but also anticipate the grief of others and mourn for that, too. At the same time, we have hope and we fight. And add to that, the periods of denial. A big tangle. And we put on strong facades. Or we don't. It's complicated. I wish I could express it better. I don't know if this makes sense or not. Because what I am saying isn't as negative as I might be making it seem. It just is. And it is precious, too, with a tinge of sadness.... Like everything--how could we know one thing from another without the other???

I don't know where to post this. Maybe it is inappropriate. I don't have a local support group that is comfortable. I don't even know if anyone wants to talk about these things. Maybe I am just too intense for the world. But late at night, I do think about these things and wonder....

Elaine

'

[ginnyde]

Elaine,

I applaud this post.

I am the caregiver and my husband does not communicate any, not any, feelings about his illness - not anger, not frustration, not confusion, not acceptance, not anything.

As the caregiver, I would appreciate some insight as to his feelings, so I can help him or comfort him or whatever.

You are right about same disease, same treatments etc and many different outcomes. Body chemistry, good endorphins, who knows, but each person and each disease is individual and will have individual results.

My dear friend that has ALS and is at the point where she can only move here hands just a little and has just been dx's with lung cancer is one of the most amazing people I know. She blows the statistics away on a daily basis. Why, who knows, but I think her attitude and love of life and family and friends has been a life extender for her.

I am rambling, I'm sorry. I think this type of post is needed and healthy. It should be included with all the different types.

[kimblanchard]

Dear Elaine,

Thank you for your post. I am a caregiver so I can only look on and admire you for your honesty. Yes, we are never the people we were, I believe that all our life experiences, good or bad, change us. People are not static, the human condition is fluid.

I often look in my mother's eyes searching for the fear, sorrow, that may be there but she keeps it to herself. I fear bringing it up so as not to upset her. When the time is right she will share.

Thank you for helping us all to appreciate the place you are in, I'm sure you are not alone. I am humbled.

Nancy

[Addie]

Dear Elaine....

I think I'm going to have to print out your post.....and consider it all for a long, long time. I thank you very much for posting it!!

I think - in your own eloquent way - you've touched on a few very important things....not the least of which being that since WE are all "limited editions".....so too are our experiences with cancer. The physical, mental and spiritual experiences will be as uniquely individual as we are. Therefore, NONE of them can be said to be too "odd", goofy or "wrong" to talk about!!

I'm barely starting out on this journey. It hasn't even been a month since I heard the dx......and already, I feel like I've covered a ton of spiritual and mental ground....so many "possibilities"....so many things I've thought about, considered, ruminated over that quite likely....I'd have left in some corner of my brain for a while, were it not for hearing those words, "You have lung cancer".

Fear takes you on some interesting mental journeys. Having cancer is a life altering event. For me....it's partly that thing about - once you have cancer and even if you're deemed "cured"....it's sort of like a home invasion. Our bodies were invaded by the cancer against our will...and if it happened once, it can happen again. That, to me, says that living with cancer is living - always - with a certain sense of vulnerability that is somehow different from other illnesses. At least, that's how I see it so far.

And as I said, I'm just beginning this journey. There is SO much to assimilate....because I don't think any of us want to live with fear being a part of our daily state of mind. Denial doesn't quite feel comfortable either. It's hard to sort through ALL of the emotions we feel...and find a balance that leans more towards strength, determination and a positive attitude towards being the VICTOR in this battle.

There are too many "fear of the unknowns"....I suppose. Waiting for test results to see how treatment is working...or where we stand. Feeling every ache, twinge, pain or physical difference as a warning or alert, raising the fear level again.

I read some of that vulnerability here, in the posts of others....and I try to keep myself aware, yet balanced. I know there will be some rougher times ahead...and I try to prepare for that too....just as I'm eating like a pig right now to boost myself before radiation starts in a couple of weeks or so.

Maybe, as a sort of bottom line to your thoughts....as I interpret them....what you're really saying is that cancer upends us. Turns our lives upside down. It's like looking in a Funhouse mirror. All of a sudden everything we "knew" or believed in seems somehow changed. Different. Scary. We no longer have the same sense of security or order or normalcy in our lives and we're just not quite sure HOW to deal with what feels unreal in a sense. It's sort of like being on the inside of a funnel....a tornado....and we WANT to feel grounded, solid, secure.....but we don't. We can't yet.

And yes, nightime is the worst. Already it has been for me. Mornings....especially when the sun is out....seem hopeful and bright and happy to me. I can almost forget.

But nights are dark....and so they encourage dark thoughts.

Do you keep a journal? Perhaps if you wrote your thoughts down in a journal on the nights you feel most at sea....or alone, adrift in your own mind.....it would help. Things in black and white that we can look at and see, seem somehow less scary than the thoughts floating around in our heads....don't you think?

Or else....distract yourself at night. Watch a movie...a comedy! Or read a good book...and lose yourself in that. A favorite magazine maybe? Or go "window shopping" on the net or in the newspaper.

Yes, we are more than bodies and prayers. We are spirits. We are our emotions. And under the circumstances, I believe we have every right to surround ourselves only with those who will support us in the ways that we need right now.

Tuesday, I had my radiation mapping. The nurse I mostly dealt with was so dispassionate, matter of fact....borderline "cold" that I came away from the appointment and cried more that day that I have up to this point. She, in fact, terrorized me with her demeanor....the lack of empathy, the very matter-of-factness (without ONE empathetic smile in the whole exchange between us!!) of how she presented me with the information.....some of which WAS simply terrifying in its own right! I mean radiation to the chest ain't a cake walk....NOR were we discussing a new transmission for my car. But we may as well have been!

I have decided that should I need further services from a nurse in radiation oncology....it won't be from her. She didn't do anything wrong, really. She just is NOT a personality that gave me any comfort or sense of compassion. And I'm sorry.....but right now I don't need "calm, cool and efficient".....I need a little empathy until I fully absorb what I've been handed!

Sorry...got off on my own little tangent there....but your words, Elaine....ALL of them are thought provoking and important. I will follow this discussion...as I believe already, that this diagnosis takes us places in our minds that we never figured on going.

I believe things happen for a reason and that even in the very worst of times, there is always some sort of silver lining. I expect to be paying a lot of attention to things that I perhaps paid little attention to before. If I have to go thru this experience...I want to find EVERY single BIT of "good" that may come from it. I do not believe this experience IS or has to be "all bad". Call me a Pollyanna....I don't care. This belief is what will help see me thru.

When I survive.....not IF, but WHEN.....there will be something I need to do to "pay back" or pay it forward for the gift of survival. I believe that too. It's only by thinking about the sort of things that you've brought up....that I will figure out what it is I will need to do.

Again....thank you for this post. I hope a lot of people jump in with their thoughts...as I think this sort of "hard to express" discussion can be very important.

[Snowflake]

Like you, Elaine, I am once again afraid of the dark. I scramble to avoid the silence that allows the doubts to breed, the thought of loss to grow and the sheer terror of helplessness take over.

When the sun is shining and the voices are still, life is still good, but I'm still not the me I used to be, either. I used to occassionally worry about where we go when we die - see, no one really knows for sure. We have different beliefs and different reasons for those beliefs, but no one can truly guarantee anything after the here and now.

So now, instead of wondering about what will happen to me when I'm 92 and on my way out of this world, I wonder if I'll be able to come back and visit if I have to leave before I'm ready...before I'm finished with what I view as my job here - to raise my boy to be a good man.

I wonder what's going on in my body, if escaped cancer cells are rallying somewhere to make another attack...if the aches I feel are mets or just aches. I feel I have the role of patient AND caregiver. I have to keep everyone else's spirits up, even when I don't feel real positive. Can't let 'em begin mourning before my death is imminent...

...and then there's my attitude. I'm back to work full-time. I used to be okay with my job, but now, it all seems so petty in the grand scheme of things. I have no motivation and I truly don't want to be there...in my feeble brain, there are far more important things than stocking pencils and sending email - like splashing through puddles and flying kites and enjoying the earth while I'm here, NOT being locked in a chemical plant for eight hours a day! Of course, I NEED the job - need that insurance and the pay...but that's no longer a real motivator...

Attitude...yeah, I definitely have one of those. When I see those high schoolers (I live about two blocks from the high school) lighting up, I want to bodily shake them and tell them that they are ten times more likely than me to develop lung cancer if they continue to smoke and that it's NO FUN to be in my shoes...but it's no guarantee. Not ALL smokers get lung cancer - but they're increasing their odds. Should I also be shaking the non-smokers and telling them to get a chest CT at least once a year to make sure they aren't carrying a "critter" that society says non-smokers don't get? After all, these kids live within miles of that chemical plant I work in and I picked this thing up SOMEWHERE...

Rainy days can bring the blues, winter can, too. Being locked up in the house and inactive brings up that little voice and the thoughts of what may be. But why the hell am I stressing, I WILL die someday. What makes me think I have any more control of it now than I did five years ago? Vicious, butt-biting circle...

So I try to avoid the cancer thoughts, as well. Far worse than the monster under the bed ever was, I could chase him off by turning on a flashlight (just as long as I jumped to my bed from as far away as possible so he couldn't grab my ankles and pull me under). This cancer thing, I can feel those monster hands on my ankles....and no flashlight in the world will make it go away.

I'm sure that acceptance is the key - I just can't always get the mindset and start to fight it....like struggling in quicksand. Just need to float and ease out of the trouble spot...

I'm sorry, Elaine, I can think of no quick fix for the bad thoughts - I have them, too. I have them prior to scans, I have them when making big decisions and I have them out of the blue, when I'm least prepared to fight them.

So, I'm trading in that flashlight for a light saber...may the force be with me... AND I'm looking for a spring board to hop over this monster...

Take care, and hang in there. Try to not end up in the dark, facing your monsters alone - it's scariest then.

xxoo,

Becky

[Andrea]

Elaine,

Thank you for that post. I have been craving to hear it from a fighter as have other caregivers. I also wonder what my mom is thinking. She seems so calm, so positive, so sure her cancer is gone, but I want to know what she is really thinking. I think she is scared as all heck and is being brave b/c seh does not want to upset others around her.

This has to be so scary for you and I applaud you for posting it!!!!!

[Connie B]

Dear Elaine,

As much as I would LOVE to reply to this message at this time, I don't have the time to do it. BUT, I WILL APPLAUD you for sharing your inner thoughts and fears of being a Lung Cancer Patient/Survivor!!!

Your words have touched my heart and mind, and I FEEL your Fear and Pain, for I too have walked that road of fear and pain and time and time again, it comes and goes like the rain and the sun. Is there a right or wrong to all this? I don't think so! Is there a pill we can take when we feel the fear? NOPE, not that I am aware of! And as far as where to post these feelings in what Forum? Anywhere you want too!

Should you apoligize for speaking from your heart? NEVER!

I will get back to this when I have more time to share.

((((((((((((((((ELAINE))))))))))))))))))))

Love, Hugs, and Support

Connie B.

[Elaine]

First, let me thank you who posted for making me feel that I could post these thoughts. As I read this again after a few hours of sleep, I recognize how inadequate words are to express exactly what I am feeling or even to express my thoughts. Plus, like everyone's thoughts, my thoughts and moods change, but what I wrote IS almost what I wanted to say, but I don't know how to say what I really want or need to say. I don't know if it is even possible.

I certainly can't say that ANY of my thoughts bear any resemblence to the thoughts of any other "fighter." But maybe something holds true for others or there would be no reason for me to post.... It would just be me blabbering for my own self, which I swear, I try not to do.....

Dean posted what he "knows to be true" a few days ago. One thing I have found is that it takes a lot of energy to fight the "demons" (cancer and the thoughts and fears) and to try to protect others from them.

Andrea and Ginny, I thought a lot about why I try my best not to voice these things other than here: I am not only tryjng to protect my family, but I am also trying to protect myself from having to see or hear them hear me. I would rather just be the me they always knew, even if I know I am not really that person. So I jsut try to be the way I was. But as you might guess, I often fail miserably at being the way I was, which is why I am so often silent and seem very distant to what is happening around me. Maybe this is the same for your loved ones, I don't know. It's like I want to be the same, but I am different and after awhile acting is really hard, so I close up.

This doesn't happen consciously, please understand. I am analyzing myself based on what I have looked back on and "seen".

So I am good for a few hours or minutes when I need to be "good." Then it seems to wear me out... In some ways, it is easier to be around strangers. They don't know how I really am or was.

I don't know if this makes sense or not.

Elaine

[dave s]

Dear Elaine,

First of all I have to admit that I saw this post within minutes after you made it as I was up and in pain. I took a pain pill and was waiting for it to kick in. So I logged in to look around the board as I often do when I'm up alone in the middle of the night. I read it and wanted to respond but could not. I really tried but just couldn't. I think it hit a little to close to home for me.

The role of patient in this LC game is a complicated one. We must fight the beast with everything we've got and simultanteously do everything we can to protect our loved ones from the dispair we internally feel so intensely. At the same time we have to make preparations for the possibility that the Drs are right and we will not prevail in the fight no matter how hard we try. Those preparations take many forms. Beyond the "final arrangements" issues are the softer but no less important things like trying to prepare those who we will leave behind to have as little discomfort as possible. I don't want those I leave behind to be sad or grieve for one more minute than is absolutely necessary.

Then there are the practical problems. There are certain things I do that someone else will have to do after I am gone. How do I try to prepare them for those tasks without making it look like I have given up. I'm talking about practical things like paying bills and managing money, etc.

It's easy to say I'll wait until later to do some of these things, but how can I be sure I don't wait to long and find myself unable to do them at all. That would be very unfair to those I leave behind, wouldn't it? Plus it would make me feel just awful.

I see I've begun to ramble so I'll stop. Thank you for your post Elaine.

Dave S

[Addie]

Elaine...again, I'm going to try to see if I'm "getting" what it is you are putting out here. I think you are expressing feelings that any of us COULD feel....and that's why it seems very important to me to try to understand....to get a handle on what it is you're trying to express. I do, at the very least, know how difficult it is sometimes to put emotions into words....especially when they feel all jumbled up inside.

I know I've already sort of put up the brave front at times, for my husband, kids and best friend....probably seeming more "normal" or strong than I felt at the time. So I can relate to that sense of being other than how we really feel inside, for the sake of those we love.

And at other times, if someone has complained about this or that....some minor gripe or complaint....I think to myself, "What does it matter? Why is something like that so important to you?" Whether or not the person complaining even KNOWS about my cancer doesn't seem to matter....I just find myself being irked that "anything less than a cancer dx" would bug them so much....you know? (Okay, that was an exaggeration....that "anything less than...", but I'm sure you know what I mean. One's priorities are different when cancer is a part of the picture.)

I think the fear is a part of this disease that is very hard to make go away completely. Some fear is always going to be there...just like any other difficult experience in life often leaves a residue of fear in our hearts.

And sometimes the only way to get past such emotion....is to work our way THRU it. Allow yourself to feel the fear....fully, perhaps....for a limited time. Then go distract yourself with.....LIFE. With something positive. Sometimes allowing ourselves to really feel what we feel, helps us get beyond it....rather than trying to stuff it or hide it or put on the brave front or be some way OTHER than what we truly feel at that moment.

I don't know if anything I'm saying really reflects what YOU are trying to tell us about how you feel. Or maybe I just am not expressing myself well. But I truly WANT to understand your feelings....as I'm sure others do....because this place is all about helping each other...leaning on each other. And you've shared this....which gives us a chance to help...or support...or maybe take away some of the fear and give you a greater feeling of strength.

I have to cut this short...have an apptmt with my onc doc. But I will be back later. I think this is such an important discussion.....

[Elaine]

Addie,

Thanks. If you read Dave S's post, it best describes how I try to protect others from the despair I often feel. He also describes the feelings I have that I have to prepare for so many "what ifs" and don't even know how to prepare for any of them because, I may be youngish, but I am old enough to know, that it is impossible to prepare for what really will happen. ( I am about your age, Addie).

But the other thing I was trying to say is that I am also trying to protect myself from having to witness the pain and suffering of those I love. When I read posts from caregivers or those grieving the loss of a loved one, I can hardly bear to think of my own family feeling any kind of despair or loss. It simply paralyzes me. I am only speaking for myself, because I don't know how others feel. I was just trying to explain to GinnyD and Soccermom and Andrea, why their loved ones may not be "talking" about their feelings. They may be so afraid to see you in any emotional pain, and know it is because of themselves.

I guess that is what I mean.

DaveS is right. It is so complicated. There are days the beer truck looks more promising than this road that seems at times to be a nightmare in a room so dark, I can't see anything in fromt of me. You know that the imagination is often worse than the reality, but then again, I also fear that my imagination is not up to snuff, and that there are worse things than I can simply imagine.

I do, though believe, that our energies go on and that something better awaits me. I just kind of like what I have now, you know. I would like to bargain for a whole lot more of what I have now. I know I can't have what I did have.... But I would take years and years of this....regardless of how hard it sometimes seems. I would stay with this.

elaine

.

[john]

I think it was a great post. I think anyone who abruptly has to face their mortality will struggle with the big questions.

who am i? What happens when I die? Ultimately we have to answer those questions ourselves but we have comfort in the fact that every human faces the same thing.

And it was an interesting point about the stage IVer who PMed you. There was an research article about how "positive attitude" does not matter. And it went on to say it may put too much pressure on people being "upbeat". That we may even blame people for not trying hard enough.

I think like you said all people are different - Dean chose to battle in his own way and every individual must anwser the big questions themselves

Take care

[Fay A.]

I spent about 3 hours this morning working on a response to this, and when I attempted to post it, I lost it. I HATE it when that happens!

And my computer is about to be shut down for the day. I want to come back to this when I can do it the justice it deserves. I'm glad you wrote this, Elaine.

I hope you are reassured that no one is going to give you the big "boo" because you had a rough night. (we all have them.) And I hope that your private messager will open up, too. No one should have to shoulder that kind of sadness alone. I hope she shares her burden with us and that we can lighten the load.

They're getting ready to reroute the telephone and cable lines. Gotta go.

[Guest bean_si (Not Active)]

Elaine

What are you doing inside my head?!

You have most eloquently expressed many of the feelings I have been having. I am speechless.

Elaine, your words, in many ways, mirror the philosphy in a book by a very well known author, Thich Nhat Hanh. I have found comfort in his books, especially "no death, no fear". Notice that even in the title he does not capitalize the word death.

I found recognition in the feelings he described as I have found recognition in those you have described. I think you would appreciate this book.

It is so hard to be honest on the fears within. Thank you for voicing them. Thank you for letting me know I am not alone.

Cat

[mhutch1366]

Elaine,

Thank you for opening the can of worms here. Mental health of cancer survivors (ie, those diagnosed be it a minute ago or a decade ago) is a subject not touched on much.

Sure, we try to keep positive, because the alternative is its own nightmare.

I sought counseling. It helped some. I found out how strong my faith was. It helped alot. I found out how much my aging parents will still do for me, and that helped.

I found out how much my kids keep me grounded and distracted and that helps.

I distracted the heck out of myself with cheap novels and rental movies.

That helped.

But more than anything is knowing you're not alone, because being diagnosed with cancer was the most single estranging event in my life.

So to those of you who air your cobwebs, bless you!

And to whoever thought he/she would be judged for the way in which they were facing their cancer -- there is no right or wrong way, and I am not here to judge. Send him/her my love and my best wishes.

XOXOXOX

Prayers, always

MaryAnn

[Andrea]

Elaine,

What you wrote back in response to my post is exactly what I am positive my mom is doing. My mom WANTS to try to act as normal and be as normal as possible because she is SO afraid for me and my dad. I think that just as we are fearfully mourning her before she is even gone, and who teh heck knows, she could be CURED, she is worried about us mourning her.

My mom wants to be normal, so she got her hair cut ("shaped" as she says) and colored even when it was half gone And they treated her like a princess. She is doing it for me, I know it.

My mom does NOT read these boards, not b/c she does not care, but b/c as a patient seh cannot deal with it and is soooo afraid and worreid for me and my dad and how we will react, that she chooses to be positive. I am hoping she is not keeping it inside of her and making her sick. I think it needs to come otu and I am so glad you opened this topic.

I actually think the best thing for us to do as a family (meaning me and my mom) is for each of us to act normal b/c then we make the other one happy Like it made mymom happy that I had a good vacation. It makes me happy when she sounds good. So we almost do it for each other as much for ourselves if that makes sense.

PLEASE NO ONE KEEP THERE FEELINGS INSIDE! PLEASE!

[Elaine]

Andrea:

Yes, we are doing it for each other AND for ourselves, too. When I was nine I remember seeing my Dad cry at my Mom's funeral. It terrified me to see him display what I felt inside. I "knew" then that he wasn't the "rock" he always tried to be for us. I guess I fear terrifying my own kids even though they aren't nine, but still young, in their early 20s. THey are still my babies, in some ways. I want them to be happy, have a normal day, you know.

elaine

[Andrea]

Elaine,

You sound exactly like my mom. I swear someone from above sent her strength at my wedding even. She was dancing and doing the horah and talking. At one point, going around in the circle I was getting out of breath and seh was fine!

My mom soooo worried about me. I can tell in certain moments especially. My parents panicked literally a month or so ago, I did not call them when I got to Court in downtown LA, I usually call when I arrive but I got a call from work and then cell reception went out, etc. My dad called my husband a few times, my office, etc.

It worries me and makes me sad to know my mom is so worried about me when she should be worried about herself.

Then I know my mom is worried and sad that I am worried and neurotic when she wants me to be worried about myself.

So instead we all just worry and make jokes about it. My mom's new nickname is my chia pet b/c her hair is growing back like a chia pet

[kimblanchard]

Elaine, I am so glad you posted, glad you are able to express yourself so well and glad you felt you could post. Addie and Becky and evveryone adds so much to it. I wish I had that ability to express myself . I have always been a person of few words, in college I was ok if the professor graded on what I wrote but if he graded on how many blue books I filled, I was in a world of trouble. I don't share my deepest feelings, like you said I am always trying to protect my loved ones. So many days I wish I could talk to someone. Like am I the only one whose mind tells them daily that I have cancer? I don't hurt so that isn't a reminder but the thought is always in my mind. My neighbor, nurse and friend who is a breast and ocarian cancer survivor as well as emergency bypass heart surgery survivor was the only one I shared much with but she has moved to Ok. and I do miss her. The phone doesn't meet the same need.

I watched my late husband struggle for those last breaths and I don't want my loved ones subjected to that. How fortunate folks are that die in their sleep. It is a shock for their family but so much easier in the long run.

My husband is 11 years older than me, and we assumed I would be the one taking care of him. Now both of our health is failing and we are wondering who is going to take care of who, should we be closing the house and moving to an apartment now, but neither of us is really up to that, and what happens to our beloved collie that needs a yard to roam etc.

I am rambling, but want each of you that posted to know I enjoyed reading your post. Thank you.

[glo]

Elaine -

It's a good post. I think one of the reasons we all get addicted to this board is because we can express those feelings that we spend so much time protecting our loved ones from. Sure everybody on here cares and feels our pain, but they aren't looking into your face while you sob it out.

DaveS -

About those practical matters of bill paying, financial status, etc. -- yes, that's important. What may be helpful is just to organize a little more now. Some of my friends and I were discussing the fact that our children don't want to talk about life insurance, and things like that. We've come to the conclusion that the best thing to do is to put together all the important papers in a binder or folder -- maybe more than one and then simply tell them "in case of emergency all the important papers and household info is in the top drawer of my desk" or wherever you decide to put them.

I have started a document that lists all the monthly bills and I enter dates I pay them and the amount. Of course I don't actually keep this up every month, cause I'm not that naturally organized, but I did print the page and put it in a binder - even a few months entries are enough of a clue as when to expect what bills. At the bottom I listed those things that are only paid once or twice a year.

I also put in other household info -- like the receipts for any household repairs that have been made recently, bank account statements, other on-going expenses and receipts. I'm working on another binder for info like birth certificates, marriage certificates, death certificates, social security numbers, deed to the house, car title, life insurance policies etc., etc.,

The beauty of this is that it's so helpful right now and makes me feel that if I become incapacitated or Snowflake's infamous beer truck gets me, I will have made it easier for my daughter and in the event we should go together in an accident, whoever ends up dealing with the mess will have something to go by.

If you don't get around to any of this, I wouldn't worry over much. My husband paid all the bills, but his system was easy to follow and everything else I need can only be hiding in one of three different drawers. I've actually found everything I needed so far without much digging. Just limit the number of spots where paperwork accumulates and it'll all be ok.

It would be nice, though, to know what the holy heck all these keys all over the house go to! That's a project for me one of these days -- go around trying them in all the locks I can find and mark those I can identify and put the rest in some container -- can't throw them away because as soon as you do, you find out what it unlocks and of course that item is locked!

Gloria

[Addie]

As I've said already....I'm just a few steps into this journey....so maybe I have no right to even TRY to relate to how it feels to some of you who are much further down the road. But.....that probably won't stop me from trying!

I've buried most of my family. Aside from my hubby and kids and my in-laws....there is only a sister who's been estranged from the family for 20 years.

So....I've got quite a bit of experience with being the one left behind and how to deal with grief. I lost my father when I was 27, just 8 days away from giving birth to my first child....and let me tell you, there is NO good way to prepare even an adult child for the possibility of losing a parent. No matter what....it hurts and it shocks and it causes pain and loss. Pain is part of life and if WE can't avoid it....neither can we fully protect our kids or other loved ones from it.

Maybe the best any of us can do is show them and tell them how much we love them....and let THEM say what they need to say to us. I don't think it's ever easy discussing one's mortality with loved ones....but I do know that when my mother was undergoing treatment and finally got to where she could acknowledge that she wasn't going to beat her colon cancer....that it allowed a much more open, honest dialogue between us, about virtually everything.

Prior to that, I had stuffed a lot of what I wanted to say....NEEDED to say to her....because she had been a bit of an ostrich up to that point. She wasn't ready to take it all in....just how advanced or serious her cancer was. And so I waited.....until she she had taken it in, and then we had some very loving, very important conversations. I treasure being able to have talked to her that openly.....that genuinely. She told me her wishes.....and I was able to address things I wanted to be extra sure SHE knew. And while it was hard waiting until I felt Mom was ready to have those discussions.....it was necessary. My mom was one of my best friends. I lost her Christmas Eve l985 and miss her still.

Betweeen l994 and l998....I lost three aunts, my only American male cousin (who was virtually like a brother to me), a sister and three extended family members! I barely had time to breathe between the losses. But not one of them died not knowing what was in my heart....and I believe to this day, thru all the losses....that it's the one thing that has saved me from regrets. I let them all know what was in my true heart.

At this point in time....I have the positive attitude of a survivor with every intention of curing this cancer. Until there is some strong evidence that that's not going to happen....I have told everyone NOT to cry any tears for me. To simply send me positive thoughts.....mental "hard hats" to fight this beast. That might not work for everyone...but it's what feels right to me for now.

But I still intend, at some point, to have a more honest discussion with my two sons. My oldest tends to avoid such "maudlin" stuff, as he calls it. Whenever I mention anything about "someday when I'm not around"....he sort of avoids the topic and I always have backed off.

Maybe I won't back off anymore......and maybe, Elaine, it's something for you to think about in terms of your kids, too...and trying to protect them. They may well be trying to protect you, too.....and what gets accomplished if everyone is sort of tiptoeing around what is on their minds?

My oncologist said something to me today that applies here too, I think. He said, "Sometimes people really want to help or do something for you...but they don't quite know what it could be. If there is some way you can allow them to help...giving you a ride, shopping for you, whatever....it makes them feel good too, as if they are contributing something to your well being".

Makes sense even when applied to our kids, our spouses, our other family...AND perhaps even to the gift of truth.

I think it's Dr. Phil you says, "You gotta name it to claim it". Well I'll go him one better and say, "You gotta claim it to stop the fear, or at least ease the fear!"

Putting some words to some of the dark thoughts or feelings may just help. You've put some of them down here.....and the burden of them is already shared and will continue to be for as long as you want to keep putting the words down. That's part of what we are all here for.

Youve made ME think about things that might otherwise have taken me months to get to. This is helpful, Elaine. I hope that for both you and Dave...there will be some comfort, some answers, some ideas in all the thoughts others are contributing here....that will help you....that will ease things a little....let a little more light into the darkness.

One thing I did tell both my sons.....is to expect a wide range of emotions and even some anger.....perhaps anger at me. I smoked. Their father smoked. Neither of my sons smokes......do I get kudos for that? How two smokers managed to raise two NON smokers is almost a miracle in itself....but I figure I redeemed myself somehow with this little feat!

But...I don't want them having angry feelings and then feeling guilty about it. I told them....I'm actually a little p.o.'d at MYSELF....because I knew a long time ago I should quit!

I'm being as honest as I can with them so far. I haven't yet had a lot of real fear....I think, in part, because I flip-flopped it over into having a purpose......fighting this thing, educating myself, staying positive, staying as healthy as possible otherwise, getting enough rest, eating right.

At the moment, I'm trying to keep myself too busy to be too fearful.

We'll all walk this journey in our own way. But coming here....means that no matter what....there are others out there at all hours of the day or night...who'll walk with us for a while, and make us feel not so alone....not so scared....not so much in the dark.

That's a huge help all by itself....and a major ray of light in an otherwise dark disease. Hanging on to that....seems very smart to me.

I'm so glad this place is here!

[Elaine]

Addie,

Just a quick note: You have every reason and right to believe you are going to beat this thing. I believe it for you, too. I commend your ability to even read what I wrote, knowing inside as you do, that you have the power to overcome this. You and Becky (Snowflake)--I can't even thank-you enough for the things you can say and write.

I was wrong about one thing: I am in my forties, Becky in her thirties and I see now that you have a few years on me--lol.

I am most ashamed of myself for this: THere have been times I have coveted the ages of people. I have felt cheated out of the years they have had or will likely have. I don't mean this to sound like a confessional, but I am truly shocked at how low my depression can make me stoop at times. And then I think of those who have not even had my years, not even close.. and then I think of the time that I have wasted, over the years. My own mother only had thirty. Her mother has over 90 now and going. I hoped to live long enough to have some wisdom and the sense to put some of it to use. So I better get going... LOL.

How old are your boys? My daughter is a non-smoker. My son smokes and it tears me up. They are 23 and almost 25. My son smoking has always seemed like a failure on my part, and more so now.

I just want to thank you all. It does help to feel heard and to find people whom I respect so much to listen to.

elaine

[Lisa O]

Elaine,

Thank you for your beautiful honest and heartfelt post. I have worries about so many deep dark monsters that stay with me- I cannot begin to tell you. My children are still too young to know what is going on or to understand Stage IV so we do not discuss it much and pretend that things are normal. Most of the time everyone else forgets that things are not normal - and that gets pretty hard on me at times.

I am just sick and sad that someone has stopped posting for fear that she will be rejected due to her progression. Is it possible to reassure her and encourage her to come back? We do all progress differently and fight differently and I do believe we would all support one another no matter which path is chosen.

Again, Thanks for your courage Elaine.

[Addie]

Elaine....my "boys" are 30 and 25 and my husband's son is 41....so yeah, I DO have a few years on you!! I'll be 58 in a few months. My youngest...for a while...picked up the habit of having 2-3 cigarettes if he was out for a night of partying with the guys. I was pretty shocked when I realized he was doing this...but he stopped about a year ago and he never smoked otherwise. For a while, it seemed to go along with the beer for him...I guess.

Now...I want to say to you....do NOT be ashamed of envying others their years....but remember too, that you're still here! And as long as you are...YOU provide hope to others that you may not even be aware of....maybe others younger than you. All the emotions we have are God given. Some, of course, we try to minimize....but to envy or covet what someone else has isn't inherently shameful and, in fact, is human nature! Cut yourself a break on these feelings...as they are quite normal under the circumstances and clearly not the way you feel ALL the time!

As for my confidence in beating this cancer...well, obviously NONE of us have any guarantees. Heck...cancer aside....that dang beer truck of Becky's could get all of us...huh?

But I know that I was fortunate that this was caught when it was...and quite honestly, after some of what I've lived thru over the past 30-some years.....well, it's just my nature to take on something like this with a positive attitude and to focus on educating myself as much as possible.

The unknown terrifies me much more than the known....so when I'm feeling a little shaky.....I either take a "time out" and distract myself with something else entirely OR I focus on researching, getting information and writing down the questions I will later ask the doctors! Attacking things this way, gives me a focus....a purpose...and makes me feel like I'm doing SOMETHING and not being passive about having cancer. It's what works for me.

If there comes a time that it doesn't work for me to be this way...then I'll try to figure out something else. I think that's what we all do, in some sense. Just try to find a way to keep putting one foot ahead of the other, keeping the fear at bay and hoping for the best. Most of the time, we still have choices and of course, we all have each other here too.

I genuinely hope that by sharing all the feelings you have, Elaine....that when you wake up tomorrow...things seem brighter...more hopeful than fearful. I hope you feel more like the real you....the you that you are most comfy with. And I hope too, that you will find comfort and strength in knowing that so many here are reaching out a hand and want to listen and help, if possible.

Remember too...that having cancer doesn't have to change everything. There still are reasons to laugh, enjoy your kids, do normal things....so indulge yourself in some of that. Any life needs some balance. Maybe those with cancer need it a bit more.....eh? Seize as many "normal" moments as you can and laugh as often as you can.

And when you need a hand.....just reach out.

I'll be thinking of you...

*******

A quick P.S. on having feelings we're not proud of:

There is this guy we know from our golf club who is 80. He's got a great sense of humor but otherwise is sort of a user of others. He drinks a lot...and can often be very nasty when drunk. He's been telling everyone about my cancer. And I mean everyone! I knew once word sort of got out...that when HE found out, it would be like a billboard in Times Square.

And it's okay that people know...that's not what has me so irked at him I could spit. What's NOT okay and what is causing me some less than kind thoughts....is that in the last week....he's seen my husband no less than 5 times and HAS NOT EVEN ACKNOWLEDGED ANYTHING to my hubby. Hasn't said, "Tough break" or "I'm thinking of you" or "How is she?"......nothing.

Yet he's running around with the juiciest bit of news to hit that place in a while....and is telling EVERYONE......and Elaine.....he's had 80 years to become an insensitive jerk and a mean drunk! Somehow that doesn't quite seem right.

See....I have some thoughts too that I'm not proud of.

[kimblanchard]

My children are 41 and 43 and neither smoke nor drink and I feel so fortunate. Their father was a chain smoker and an alcoholic (recovering in the last years of his life). I smoked far too many years and my oldest grandson at a pre-school age begged me to quit. I finally did. Needless to say when I found him smoking at age 19 I reminded him that he was the one that nagged me to quit. I hope seeing me bald, weak, gasping for breath if I go up a few steps

and living from scan to scan has caused him to stop and I think it has but his pregnant wife still smokes and needless to say it worries me but I keep my mouth shut.

We all say "I love you" everytime we end a phone concversation or when parting. Everyone knows they are loved including their step-dad that they each adore. There may be regrets but not on that subject and I think we do fairly well discussing the future when the need arises such as last summer when we went through possessions and listed who would get what "someday" and they took a few things we weren't using then so when the time comes for one or both of us to move into a smaller place no one will have to do it then. But we don't dwell on the future. We all try to make the most of every day God gives us.