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I feel like a horrible person...


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so according to all the Drs the treatment is just a life extending thing...dont expect too much out of it...OK fine I did that I got myself all in the thought process of "hes DYING" and I got grips with that for the most part. well I get the CT an I find that while we still have alot to go there is REALLY good improvement! THATS AWSOME RIGHT?!?!?! well yea thats awesome! but my brain is having a hard time dealin with the cancer is dying more so than he is... isnt that AWFUL? what the hell kinda daughter am I that Im almost disappointed its working... is it because I read all the horrible ways that others loved ones have passed on and dont want that for him? or am I just a total whack job that really needs to make a apt with her shrink?

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I'm not you, but I'm guessing that it's less that you're disappointed that it's working, and more that you don't know what to do with something you haven't prepared yourself for. Kind of a, 'great it's working, but he still has cancer' kind of feeling. I imagine your body and brain are reacting to the fact that it is GOOD news, but you can't let your guard down anyway, and THAT is an exhausting feeling.

Be gentle with yourself, and know that this is a roller coaster and the emotions don't always make sense. Again, I can only guess here because I'm not you, but I'm betting they are just difficult to name right now as they aren't simply 'happy' like you expect they should be.

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I agree, don't be too hard on yourself. You're NOT a horrible person and what you're feeling is, I think, perfectly normal.

You prepared yourself for the worst after having suffered through a horrid diagnosis initially. You are likely just subconsciously afraid to hope for fear you'll have to go through those awful initial feelings again.

You're obviously there for your dad, your'e a good person, and I wish you and your family the best.

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I know exactly how you feel. I think we caregivers and / or family members have all felt that. Ever since Mom was diagnosed a couple of months ago, my whole world came to an abrupt holt. My life will never be the same. Of course, it's nothing compared to how my mom must be feeling, I understand that. And she is so strong in front of me. Probably protecting me. I hear so many people say that the statistics are just numbers....that my mom is a very strong woman....she can fight. She will fight....but the fear has come over me like some evil entity. I have been in a such a dark place over the past couple months. So scared. And then, finally, she starts chemo & I can breathe again. Her coughing has gotten better, she's not throwing up every meal (we're assuming the vomitting is from the 2 X 15mm nods in her lymph nodes in her chest which have been causing a gag reflex when she coughs...it has nothing to do with nausea)....and then I am walking down the street and that fear takes over me again.....I stop breathing & feel as though I've just witnessed a child run in front of a car...it's that panic, survival rush of panic that takes over my body. I start sobbing and want to scream......THIS IS NOT HAPPENING TO MY MOM!!!! I can't breathe, I gasp for air...my whole world starts to collapse.....and then I find my strength & exhale. I HATE, HATE that evil dark place called FEAR. I can't go there anymore. I don't have the strength to go there. I can see how we're just starting this rollercoaster ride. Mom has had 2 chemo treatments and we have so much ahead of us. How good will it get when it's good? How bad will it get when it's really bad?

I'm sorry for going on and on.....I just know how you feel. You are so "normal". And from the other posts.....it appears as though we are all feeling these same very normal feelings.

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Yes, it's the roller coaster effect. You're strapped into this thing, you can't get off, it won't stop, you can't see the track ahead, and when it's going up and everybody else is laughing all you can do is brace yourself for the next time it starts down, and you don't know when that will be since you can't see the track ahead, but when you feel your stomach and heart in your throat and all the dirt is coming up from the floor you know you're heading down, and while everybody else is screaming on the downslope you know there are bound to be better times ahead, but you can't even enjoy that because you know that before you can head back up you're going to be ground into the floor with the weight of the world crashing down on your shoulders, and you don't know when that will be...

Nope, kaneohegirl, no horrible persons anywhere in view around here. What you expressed is what most, if not practically all, caregivers have felt deep inside. It's just that most have never had the courage to acknowledge those feelings. I've never said it before, but I had the same feelings when my dad was in the hospital (though not from cancer). I knew down deep that he would never come out of there alive, and that as an outdoor, vibrant person all his life he was miserable being cooped up in there with no realistic hope of improvement, so I secretly welcomed setbacks as long as they weren't causing him pain. Some might be shocked reading this, but probably very few in this group.

Aloha,

Ned

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Hi Kaneohgirl,I understand what you mean. This journey is such a rollercoaster of emotion. I sometimes can feel myself not wanting to think that things are looking great as I dont want to be plunged back into the despair of treatments not working for Dad etc. I am sometimes scared to allow myself to think 'at last something is working' incase my whole world comes crashing down around me.When I am with my Dad I push him to be positive and wont let him feel despondent tho. Does this make sense !! - I think we all have personal defence mechanisms that we rely on to avoid giving ourselves too much mental trauma and anguish.The mind is a weird and wonderful thing and we are all individuals who cope in different ways. You are not going crazy so don't worry about any feelings you have at this time.Thinking of you.

Love Dawn

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All these analogies are soooo accurate ... especially Ned's roller coaster ride. And I echo what tj said ... I'll be feeling fine and then this sudden feeling of dread (for lack of a better word) or impending doom. Like I should be doing something to stop something tragic and I can't. I even have to stop and think, o.k., kids are here and here, they're o.k.; just talked to my mom, she's o.k. (for now), husband's at work ... it's like an axiety attack but yet different.

No one wants their loved one to beat this more than me, but I feel as Ned did with his father. I don't want her to suffer and be miserable above all because I know that's what she wants too.

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I agree completely. Neds roller coaster ride was right on!!!

I know I just can't let myself get to excited for the fear of the rug being pulled the next week. I do believe in my mom's treatment and she is doing well but I just can't let my guard down.

Try and relish this good news because you never know when a miracle will happen!!!

Prayers for you and your family, thank you for sharing your feelings, many can relate.

Dana

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Your feelings are completely normal and not in the least bit evil.

Life extending treatment is a wonderful and glorious blessing IF the life being extended isn't terribly ill and suffering. Otherwise, you realize that's what's being extended.

I don't know a soul who wouldn't wish another twenty years for a Stage IV parent or spouse. But I don't know any live-in caregiver who would actively pray to extend the life of a terribly ill and suffering parent or spouse for twenty years if their condition were to remain the same.

It's unfathomable that any patient should go through that kind of agony. And it's equally unfathomable that a family should live through their loved one's pain.

I'm quite sure you just want something to count on, some stability - and to know that dad will get well and live forever. Otherwise that dad won't be extended years of more pain.

You are not a bad person!

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I agree with the roller coaster analogy...

my husband almost died a couple of weeks ago and they were able to turn it around pretty easily...

I was happy to have more time with him but at the same time I was almost upset b/c I had spent the whole day bracing myself for this and "preparing" and then it didnt happen... as glad as I was for more time..it upset me knowing I was going to have to do it all over again later as I know he doesnt have much time left....

as much as I have liked good days..I have come to resent them b/c I foolishly think I can breathe and then I get snapped back into reality pretty quickly....

my thoughts and prayers are with you for strength and peace during this difficult time

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I think we work so hard to prepare ourselves for the worst---then we get hope (which is great!), but we fear that we will have to start the process all over again. Just when we think we are prepared for one eventuality, we are faced with another.

Praying for you this week.

:) Kelly

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I think I undertand where you are coming from. My mom is is a "good" place right now with her treatment, but it's like I'm afraid to relax and enjoy it because I know this battle isn't over. I have to keep my guard up, so it's confusing when you sense that it doesn't need to be up. And just when you sort of figure out how you need to be coping emotionally--eveything changes--Ned's rollercoaster. It's a wonder we all don't lose our everloving minds with all the ups and downs!

Susan

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Patients are not the only ones who have good and bad days. We need totake care of ourselves in order to take care of the ones we love and take care of also. Glad to hear things are a little better today.

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Please don't be too hard on yourself. There is definitely no rule book on how you should feel at any point through this ordeal. I think it's very hard to prepare for the worst and be completely taken aback, maybe even as hard as being taken aback by bad news when your hopes were high. It's a roller coaster ride, that's for sure. Praying for your family.

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fascinating thread...To sort of elaborate on the very apt rollercoaster analogy: when you're at the bottom, you have the comfort of knowing that you can't get lower. With being lifted returns the possibility of being dropped again.

Don't feel guilty for having trouble *enjoying* good news. Its a unique byproduct of this experience that is neither bad nor good, it just is.

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Like someone once told me, you are not a rock. You are not cold and hard all the way through like stone. In the middle, you are loving and warm. The fact that you (or any of us, for that matter) are all mixed up inside shows just how loving you are. Could you possibly have that many emotions running through your heart and head if you didn't care? No way!!! My emotions go up and down all day long, every day. I'm like that box of chocolates, you just never know what you're gonna get.

I think you are perfectly and completely normal!

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  • 5 weeks later...

I've been dealing with this for 16 + months and hope to continue dealing with it - but's it exhausting! I've gotten to the point were I actually forget she has it, and then SLAM! something comes out of nowhere. I've noticed that this disease hits me at points of Joy in my life - got married, 6 months later, stage IV lung cancer. Had baby - 1 week later - multiple brain mets found. I've realized that I've changed as a person since the diagnosis, and I "miss" the old me - I tend to think about the future constantly, and everytime I see my mom do something (i.e. - hold my child) - I get teary eyed wondering if it will be the last. I'm a mess! So, I will say from a "semi-normal" individual - your ok in thinking the way you do....

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When I feel the way you're feeling, I call it the "Ice water in the face" feeling! :cry:

For instance: We go to the doctor, they tell us the tumor has shrunk 60%!! Yayyyyy! Big sigh of relief.

We go back to the doctor 3 weeks later, and the tumor has "had babies"- :shock: - It's like having ice water thrown in your face.. it takes your breath away.

It makes you feel so insecure, and I think that's what causes me to feel like we're "teetering on the edge" all of the time. I'm thinking of you, and I truly understand.

Take care of yourself.

Nova

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It's normal...I think we all feel this way- not knowing how to perceive or react to the uncertainties to everything...living moment to moment and scan to scan...not trusting or feeling secure anymore.

It is a rollercoaster. I called what I felt "whiplash"...where you are moving along in one direction emotionally and then bam/stop/spin- off you are in another direction- your emotions and sanity are left trailing behind it all trying desperatly to catch up before there's another spin in another direction.

I took it in moments at a time and stayed in the present...I think if I concentrated too hard on the entire situation (loss of what was, reality of what is, uncertainty of what will be), I would have imploded.

Hang in there. We understand and we are here for you.

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My mom has not had chemo in a few weeks. She had a broncoscopy in the hospital & they cleaned out her lung quite a bit. Plus did some other therapy to get the infection stuff out. She's home & we just went up to our summer cabin this past weekend. I don't think I've seen my mom this "normal" since March (pre-wrong-diagnosis-of-pneumonia). She has energy, no coughing, no shortness of breath....just looks beautiful and looks as though she feels great. You'd never know she was stage IV, Adeno. Family friends at our cabin just couldn't believe how awesome she looked. Especially after reading my carepages.com updates on her. Right now I don't feel that my mom has a serious illness. I like this place. This mental, emotional place that I'm in right now. No tears, no watching her with my 2 very young daughters and getting teary eyed praying to God that she watches them grow up with me & helps me raise them....I don't believe that she is sick anymore. I won't believe it. And that's where I choose to be right now. Maybe we can wish it away or ignore it so that it isn't true. That's where I choose to be. And I'll kick anyone's a** who tries to tell me different. That's where I am. Some may call it denial. I don't care. It feels good to be here.

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Don't feel bad.

When we had our meeting with the oncologist, everything we had been told or read said mom wasn't going to make it, and she wasn't going to make it for long.

The onco was sounding encouraging, longer life, quality...travel if you want blahblahblah. Well, guess who was more put off by these words than anyone...my Mom.

She went as far as not liking the guy. Because we get reality ripped from us when diagnosis happens. And then we start to accept another reality. Then when that one isn't what we thought we CAN get fed up with the rollercoaster.

So even my mom had trouble accepting any kind of hopeful talk. Seems normal.

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