Need to be strong? May be sensitive.

[Elaine]

This is for patients. It's not that I care who reads it or posts, but I don't want to upset anyone. I guess it's really for those of you with ED.

I had to ask myself why in the heck did I get so upset once again. Besides the reason that might be obvious to some of you, I am sure there was more.

I know Betty has brought this up sort of, but I don't know if we have ever really talked about it lately.

It's about this constant need I feel to be strong for others. So one of my ears heard this when someone posted I don't want to hear from patients:

I "heard": keep on being strong no matter what and don't dare talk about anything that might upset anyone. People already have enough problems, so don't add to it. That's what I heard, not necessarily what was "said."

Theresa the nurse posted a quote about the fear others have of people who are sick because they can not or are not ready to face their own eventual demise.

I am not ready to face mine either, but I just keep thinking I better just not say anything. I think part of it is I don't want to face anyone else's pain either. It's all mixed up--my need to be weak at times, my need to say some things, and my "need" to not face things, which means not say anything.

I am careful never to wince, knowingly, and that is pretty hard to do some days, believe me. I am sure I am doing a horrible job of faking it since I walk like a snail.

I hate being alone here, but on the other hand, I don't have to pretend if I don't want to. Likewise, when I am around my kids I am in much better spirits, so I do more and feel less badly.

It's mostly just with my husband. I think we need to talk about some of this, but he is just beside himself with fear and helplessness and maybe I am too. So it feels like a big wal,l and I don't know a way through it. Where IS the door?

It doesn't help that it may be 2 or more months before I move.

It was pretty scary being here with no electric for 6 days and nights, no TV or heat-- did have a phone but who wanted to hear me whine.

I don't do whine very well; hard for some of you to believe it.

I got some pretty bad news in a most horrible way yesterday. Instead of a Dr telling me I need O2, I get a phone call from some O2 salesman. I guess I should have been able to figure it out myself looking at my PFTs, but stilll...... only one of my values is way low and I didn't know what it meant to begin with.

I guess I am just not ready for a lot of things. I know O2 isn't the worst thing that can happen, but for me, it is a milestone that means a lot, symbolically.

Is anything I am saying making a bit of sense?

I also have read that people who are sick begin to close themselves off from their loved ones. I have done that some already, and I don't want to do it anymore. I really don't.

I know my own mom did that when she was sick, and I was just a kid. It was awful.

I also see where people lash out at their loved ones. I don't want to do that either. I would hate myself or hate for that to be memories floating around in my kids' heads.

I cant tell you how many other fears I have, and I guess these few are enough for now.

All I know is that I feel like I am walking around in a foreign land ,and someone keeps chainging the "rules" so I am sure I am going to mess up bad, so I am very careful.

I guess I do my messing up here, instead.

I guess counseling is an option or worse hospice. I don't mean to offend, but I just can't see doing hospice or counseling without my family around.

elaine

[betplace]

((((Elaine)))) I don't know about anyone else, but you are making perfect sense to me! My therapist has been the biggest blessing for me. If you are not getting some kind of counciling please consider it. If you are and it isn't helping, change therapists.

Mine is so good, I never have to pretend with her, I can let out all the fear, I can discuss how other people are reacting, I can admit to her that I may die. I can't do that one with ANYone else. It upsets them so. I can even tell her how much I hurt.

[paddy]

Bet's suggestion sounds like a good one to me Elaine. It will enable you to "get it all out" without alarming your loved one's. I must say though I would have preferred to know what my husbands fears and feelings were so that I could have addressed them, instead of worrying about what he was "thinking" all the time.

I have great admiration for you. I'm sure this must be the hardest thing to be going through and you are doing it with great courage as are so many of the people on this board. You have my prayers and positive thoughts,

Love Paddy

[shelliemacs]

elaine,

i can't begin to understand the fear or emotions of a cancer patient. Its just something that I watched from the sidelines. No matter how many people I end up being a caregiver too, I still won't be able to know the gut wrenching fear.

I wish my mom or dad would have talked about it. I knew they were terrified, i could see it in there eyes. I think they did as you say and kept it to themselves for me as well as them. if they didn't talk about it, it would not be true.

i know my mom and dad used to say allot, that they wont be here for this date or that occasion, i always said "sure you will" but alas they were not.

All I can say is that I am sorry, I am truly SORRY that you have this Mother Ducking diesase. I hate it , I so want to cure it. I for one would make the deal with god to take time off my life, if he would cure the diseases that take people to him. If we were all given say exactly 66 years and 55 days and knew that from the day we were born, we would all say ok, i accept that. but what a person faces when they have a disease that may possible take them to heaven sooner than that time period is to say the least, unacceptable.

gosh am I rambling here or what.

i guess to sum it up elaine. I am sorry, so sorry you have LC and would give up anything if someone would cure it.

[nikkala]

Elaine,

I am new here but your post really struck me. I would like to tell you about my mom who died of LC at age 41, 9 years ago. I was 23. The day my mom found out she had lung cancer was the same day I found out I was pregnant. although my moms cancer was extremely advanced when discovered she lived with it for 3 yrs. She always put on a happy face for me and my daughter whom was her motivation to live. She never complained or cried or told me of any fears or anger. I never shared with her my fears or anger. After my mom died I went to her house and was going thru her things with my stepdad when we discovered a journal she had kept. She wrote most of the time in the middle of the night when she was alone and couldn't sleep. She wrote about keeping a good front for everyone and "needing a battle plan". Those words will stay with me for the rest of my life. My heart aches EVERY DAY knowing the pain she was going thru and felt she couldn't share with anyone. I really hope you will allow your family to share in your anger, fright,sadness and all the other feeling you are going thru. If I could change one thing in my life it would be to go back and just hold my mom and cry along with her. Good luck to you Elaine. May the angels watch over you.

[SDianneB]

I've been pretty much a loner for most of my adult life, don't have much immediate family to speak of, but love dearly the ones I do have! (They tease me that I know more about our ancestors 100 years ago because of all the genealogy work I do -- they may be right!)

Although my family is factored in on everything that affects me and I talk to them about it openly, it's a different thing than people who have husbands and children - completely. So, how could I ever understand that? Simple. Because I've seen and observed it for years and years. And because it's often someone from outside the situation who sees it more clearly than those directly involved.

Professionally and personally, I've been around seriously injured, seriously ill, terminally ill, and dying people since I was 18 years old. Personally, I believe there are worse things in life than death.

So, you're handed a cancer diagnosis. Now what? It's like the stages of grief that we go through -- anger, denial, etc. We go through it. Sometimes we come out of one stage and go to the next smoothly, sometimes not.

But, as for me, know what was more fearsome to me (and still is) than the thought of death? What I was going to have to go through just to GET there. Chemo, radiation, morphine, and all the buzz words that float over the heads of people with devastating diseases. We try and swat them away one at a time, but sometimes they come back. Sometimes they are here to stay. We just don't know for how long.

In order to get there, counseling - yes. Hospice - yes. Whatever can be helpful to us - yes. Being single for so long, and independent as heck, I've learned a great deal about having insight into myself and what I feel. Generally when I talk to counselors, they tell me that -- that I have good insight and just need to concentrate on x, y, or z. Whatever.

In the meantime, there is that ONE thing that we have to do, no matter what else we do or don't do - we LIVE. Life. As long as we have it.

The reality is that people who are 20 or 30 or 40 or 80 and who are in perfect health might use some counseling to prepare for disease or death just as much as any of us, but most don't seem to think of it until something whacks them upside the head and says DON'T THINK YOU'RE GETTING OUT OF THIS LIFE EASILY!!!

What keeps me strong is just that -- LIFE. Living it every day and hoping that I don't have to worry on THIS day about steroids or more chemo or more radiation. I may have to worry about that on the NEXT day, but not on THIS day.

And then I call/email my family and let them know that I'm ok and that I feel good and that I love them dearly.

Di

[Treebywater]

Elaine--

Thank you for the reminder to be sensitive with my words as a family member... Seems like a tenuous line sometimes--wanting to stay and talk positive, and needing to validate and listen to the REAL feelings of the muck of this stuff. I WANT my mom to feel like she can tell me she's scared, that today is a really shi__y day, that she hurts physically and emotionally. I know I have to work to create that environment... I also know I have a very independent mother who has always tried to protect me from 'the bad stuff.'

Know that is IS ok to not be strong. It IS ok to whine. It IS ok to not put on the brave front all the time. If this is the only place you feel safe doing that, then come here lots... (Sometimes I find that it's a comfort when someone will just give me permission to feel those things... so--You have permission!)

((((hugs)))) to you.

[mhutch1366]

Elaine--

(((((((((((((((((Elaine))))))))))))))))))

Cancer sucks.

Take a big hot bubble bath and go ahead and cry.

I did that every day for several months.

It got it mostly out of my system.

I had no husband and the kids were with him while I was recovering from surgery and chemo and radiation.

I understand I did a lot of grumbling, bitching and moaning under my breath.

Mostly I think I was not too bad because I was left alone.

But I was horribly depressed.

The thing that got me through this at all was prayer.

No joke.

I would say the same prayer over and over and over.

I'd do it in radiation,

I'd do it at night going to sleep

I'd do it in the testing. I fell asleep in the MRI once.

The depression was worse than the disease.

People at work can suck so bad when something like this comes up.

I feel for you, hon, I do.

I cannot comprehend doctors who will not keep trying.

I cannot comprehend people who will not keep trying, period.

That's another story for another day.

Point is, I see your point, it's valid.

You need more than hugs and prayers, but that's the best I can do for now from here.

(((((((((((((((Elaine)))))))))))))

Prayers, always

XOXOXOXOXOX

MaryAnn

[DeanCarl]

Elaine,

The best thing I can suggest is to seek out a third person you trust (or can come to trust). And if you can get your family members to think about doing the same it would be even better. Gay has her psychologist and I have the hospice chaplin (not my usual route for things like this but and chaplin that plays poker on the internet can't be all bad! (actually he is VERY good)).

I find I can say things to Felix (the chaplin) that I just can't say to Gay even though we are so very, very close. With Felix I can be afraid, or angry or whatever. I mean, that's what he's THERE for, right? That's his role, his job. And MY role is that of client rather than husband, lover and friend. So not only is it ok to NOT be strong when I'm talking to Felix, it's almost EXPECTED!

Dean

[Justakid]

Elaine-

Please know that your are not alone. Everyone we (as cancer patients) come in contract with handles "us" differently. WHen I'm in a good mood I joke with people and say all those "taboo" things that everyone is thinking but not saying (except around my children).

I understand the "pulling away" from your family too, it almost makes it easier and you think it will be easier on them too (if something happens).

Don;t have any answers, just wanted you to know, you are not alone!

[Pamela]

Elaine,

Your soul shows in your postings, and I am so, so sorry that you have to go through this horrible experience.

I do not have cancer and I have never been seriously ill, so what I say may have no credibility.

I know as a family member that I wanted desperately to talk to my Dad openly and honestly about what was happening to him. I most certainly did not think less of him when he was weak and suffering. I wanted to know what he was feeling, his fears, his thoughts about his life and what it all meant to him. I wanted him to cry with me and laugh with me and allow me the privilege of giving back some of the strength he gave to me all my life. I wanted to share old memories and be a part of the experience with him in a real way. But Dad was so accustomed to being strong (and silent) that he bottled it all up. Maybe he was afraid if he talked about it, it would overwhelm him. I don't know.

I don't know how old your kids are, but they may be waiting for you to make the first move and show your vulnerability. They may be wanting to ask questions and share the tough stuff with you. They may be holding back because they don't want to make this harder on you. You will know your kids better than anyone else, so you may have a sense about that.

Just rambling thoughts. You are so eloquent in your postings and I am learning from you.

Pam

[stand4hope]

Elaine,

For the first time in my life, I'm really struggling for words. (My hubby would call the doctor for ME if he knew that).

I do think on the "hearing" part that we all hear the same words differently, which has certainly been proven in the past few days.

On all the rest, I can't add anything to the wiser minds above me on this thread.

All I can say is what my heart is feeling. My heart is feeling that I love you, I care so very much, and I'm sorry you are having to go through any of this.

Love,

Peggy

[Nushka]

Elaine,

I know that as of my last check up in Oct I am NED...but...I know that it may not stay that way. What you have said makes perfect sense to me. We try to put on our "good" faces while inside we are a mess. I am able to talk to my husband some about it, but mostly its just me and this board. I admire you greatly. You have strength (even though I know that sometimes you don't think you do) and you think of others. I hope that when my time comes (and we never know when that will be), that I can be strong and take care of business and hand myself over to the Power that is. I am not sure I can but I really do want to. My children don't have a clue what is going on inside my head. I try to keep it that way but sure wish they would take more time to just "be" with me, just in case. You know what I mean? My thoughts are getting all jumbled right now. Its very late. I just wanted you to know that you are not alone and that you can say anything you need right here. ((Elaine))

Nina

[SDianneB]

I wish I could track down a video of it, but a little over a year ago there was a Nightline show that highlighted a cancer patient and her physician. The physician's wife had been through cancer treatment, and he reorganized his entire practice due to the (overall poor) experiences they had with the "system" during her treatment. He'd changed to a team approach -- had counselors, surgeons, holistic practitioners, etc., all available in one practice.

The cancer patient was undergoing chemo for advanced breast cancer. We saw her in a pretty wig, with makeup, and nice clothes. "This is me living," she said. And then she pulled off the wig, wiped off her face, and threw on her sweats. She said "this is me dying." She said that when she went to the grocery store with the wig and makeup, friends would come up to her and say "let's do lunch." Just meaningless things that implied she had a future. She said they never saw the other "her," because they couldn't handle it. She said that if she showed up at the same grocery store without the wig and makeup, in other words showing her friends "the dying me," they would run in horror.

Her family and close friends, of course, knew both. She said it had taken her the better part of the time spent in treatment to weed out those who could from those who couldn't take it. In the meantime, she had no choice but to take it -- every day.

I guess we just have to look for the "happy" (for lack of a better term) medium in all this, and not have our expectations set too high so that we alienate everyone, yet have them be realistic at the same time so that we aren't hiding from or deceiving others.

They just don't teach you this stuff growing up.

Di

[ellakc2]

Hi Elaine,

Please know, I would say we all know what your feeling. It's easy to

pull away. I think it's because you want to stay strong in there eyes.

Don't have any advise. Will pray for you. Fight and stay strong girl.