Thoughts about life in general

[Isunique]

First of all apologies to anyone that might be offended, hurt or just totally irked off at me. But, I needed to put some things into words.

I have been reading quite a few posts about death. How we are taking a loved one’s death, or how we will discuss it with our loved ones. First, I need to say we are fortunate. I know that it doesn’t seem like it but we have had the fear of the unknown taken from us. Not all of it mind you but some. Have you ever went to a funeral and afterwards debated in your head and your heart how it is going to be when you are gone. How will my family take it? How will I go, will it be quick and painless or will I suffer? Or if you are totally weird like me; wondering if you will have a good turnout? Okay, I figured if I couldn’t be popular in life, maybe…. We have the opportunity to deal with this hard and painful topic beforehand. Now, I am not saying that it is easy or that we feel good about doing it, but it can help ease some of our fears. I know I have thought about death and what it might be like. I sway between being very religious and being very logical. I have come to the conclusion that I don’t think I will mind it if we could set some conditions.

1. Could I be updated every now and then about what is going on.

2. If life on another planet was ever discovered could I be told about it?

3. If they ever discover a cure for the common cold or cancer could I be told?

I think that is what bothers me the most after not being able to be with my family, I am a curious sort and I like to know what is going on in the world, if I die I won’t know, bummer.

Okay, now that you know I am really strange I have some more stuff. I don’t want anyone to think I take this lightly, I don’t I am just as scared as everyone else. I just have questions and strange thoughts. When I go, I want my family to have a party, a celebration. I am tired of going to funerals and seeing everyone sit around for hours talking about what a saint the deceased was… I wasn’t and I want my life to be celebrated and remembered for what I did and who I was. My “life” will go on in everything and everyone that I have had the good fortune of coming into contact with, loving, helping, or just being with. When you think that you are sad because you miss me, look up to the sky and dream about the clouds like I did, look at the evening starry sky and wonder if you will ever see the day that life from another planet will be discovered.

I don’t want my family to sit and mope about me. Talk to me and remember me, but no moping and risking losing one second of your precious time with your family. To all the daughters and sons, husbands and wife’s that are taking care of someone that means the world to them, love them, and when the time comes let them go. We as cancer patients know that the time might come that we will have to make our final exit, help us and guide us, but please don’t make us feel guilty; we already do and will need all of our strength to finish our final chapter.

Well, I am going to go for now. I hope that when you read this you will forgive my rambling on. I find it is easier for me to write things like this down. Okay, I need some encouragement that I am not totally nutso. I often feel like I am a baseball player and I am playing on 2 strikes, gallbladder cancer and now lung cancer.

Sorry, it is a long post and if the moderators feel the need to delete that is okay, just needed to do this.

Please take care and look up at the sky in awe, tis a beautiful sight to behold.

Love to all

Sarah

[RandyW]

Sarah First off congrats on surviving 2 cancers!! As a moderator I do hope this post does not get deleted. I find it thought provoking because like you have said we do hear so much from caregivers and caregiver survivors on death and dying but rarely is such a post writen on behalf of the patients I think. I do know that my late wife was scared at many points in time and she wore a special necklace for strength. ( A personal belief system that she had so...) we never really discussed her fears that much but we did talk more about my future with out her some what. I never really knew what she was thinking so I now feel as though I do nowto a certain degree.

My prayers and thoughts go out to you and I shall share some wisdom or a special thing that I do now because it may help you out some if you decide to try it.I like to pray and talk to God uner the stars at nite. It has a strange calmming effect for me when i get upset or stresssed out or just in a bad mood. THought that may help you out at some point and time so..

Any way i hope this does not get deeted so....

[SandraL]

Hi Sarah. If you are nuts..well you have just joined a very large club. And a fun one too I might add. I am with you on the no doom and gloom thing. Celebrate the crazy people we were. Stick around though for a bit please...and let us get to know you better. I plan to go out in style...but not for a very very long time. Thank you for sharing your thoughts

Sandra

[CaroleHammett]

Hi, Sarah.

I think that most of us who have lung cancer are at least a little bit crazy (the survival rate statistics are enoiugh to do that to us, even if we weren't already nuts--which I most definitely was ).

One of the ways in which I am thought by some to be crazy is that I think I'm lucky to have been diagnosed with an illness that has given me a "heads up" that I am dying, rather than having been killed by that proverbial bus (in which case I would have been unable to say good bye to my family and them to me).

I also believe I'm lucky in that I've had children, even grandchildren, and a career and hobbies I loved, and although I might "feel" young to be dying (I'm 62), the truth is that I have had a full and rewarding life, and since being diagnosed, each day has been more precious to me than the last.

As an agnostic, I don't have a clue as to whether there are more adventures ahead of me, but I do consider the act of dying an adventure itself--a learning adventure, and I've always had a love of learning so I've definitely been doing my "homework" about the subject (including subjects such as voluntary refusal of water and nutrition, palliative sedation, etc.).

That doesn't mean I don't experience fear: I sometimes find myself scared, but not nearly as much as my family members and friends. I hope to die with grace and dignity, and I find myself concerned sometimes that, as a result of their fear, that they will be reluctant to let me go at the end--for their own sakes rather than mine. (which is why I've completed all the paperwork to make that less likely; i.e., the Five Wishes form, DNR, etc.)

Like you, I hope my memorial service is a celebration of my life, not a mourning of my death, and that my family members and friends remember me as i was (warts and all!) rather than turn me into a saint (no wings on this angel! )

Am I nuts? Does it really matter? I am who I am. Some love me for it and others don't. As to the latter, that's their issue and I can live with it or die with it.

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

[MarGre]

Hi Sarah,

No, you are not alone. I too am hoping for a good turnout! You raise some wonderful points and questions. If I had a choice between going suddenly (time to be determined) and knowing, I would prefer to know. It gives me a feeling of some control over how I exit this life.

Keep on posting those thoughts and questions! I'm tend to only post when I have a specific medical question/comment but enjoy posts like yours that raise the bigger questions - especially when done with humor!

Marcia

[Patti B]

Hi Sarah-

Well, seems like we have quite a large "nut" club because I, too, want to go out in style and have my friends and family celebrate my life and not be at my funeral hysterically crying. Its hard on me, sometimes, because I have a son, and a mom who is 91 years old and I realize how difficult this will be for both of them.

I often wonder the question you posed re: whether its better to know how/when we are going to die or not. I don't know about that one. This is damn scary knowing how I am probably going to die but yet it has given me the ability to appreciate things in life. On the other hand, it might be nice to be oblivious and just go out without knowing in the blink of an eye.

Do I want to die from LC?? Of course not. Am I ready to die??? Absolutely not - I want to live a long, long time and see my son become a man with a family. Have I accepted that I may die within a few years??? Sometimes I think I have, but yet I am doing well and who knows how I will feel once I start to go downhill and know the end is coming. Will I still be in acceptance or will I be terrfiied?? I guess bottom line is, we are all dealt a certain deck of cards in life and we have to live with those cards, like it or not.

Thanks for starting such a thought-provoking post.

Hugs - Patti B.

[Connie B]

I'm not sure why Randy thinks your post would be deleted in the LC Survivors forum, This IS the place for LC Survivors to come and vent and share there thoughts and fears, but I can assure you your post it won't get deleted! Your not alone in your thinking and thoughts of death and your fears of how will we die, etc, etc, etc,. Those of us on the Lung Cancer Survivor/Patient side of this fence know exactly what your talking about.

Here is what it says on the Front Page of LC Survivors Forum:

LC SURVIVORS

A forum for anyone diagnosed with Lung Cancer, those in treatment and those who are not, to express their thoughts and issues from a patient's perspective. A place for survivors to connect and vent and to share their journeys with one another.

Those of us that Moderate this Forum are ALL Lung Cancer Survivors and we totally get what your talking about. As a matter of fact, we did have a chat about this not that long ago, and we have had these little chats before. Your safe here and we're here to support you and to let you vent.

It's hard when we KNOW we might be facing death in the near future. A million questions run through our crazy little minds.

Your in GOOD COMPANY with some of us Wierd-o's that think strange and wierd things.! Your going to fine out we've ALL had some of the same thoughts, PLUS SOME!

I'll reply later to your post when I have more time.

((((((((((((((((((((SARAH)))))))))))))))))))))))

[recce101]

Thanks for starting this thread, Sarah, and thanks to the others who have been willing to express their own thoughts, incomplete and conflicted as they may be, for the rest of us to share. For myself, a somewhat spiritual and "universal" person but not religious in the conventional sense, I thought I had things pretty well figured out at one point. But that all changed some 23 months ago, and I'm still "working on it."

Aloha,

Ned

[RandyW]

Just trying to ease fears from Sarah basically. I did not hesititate to think that this one would be deleted for any reason at all!! Just a little insurance!

[Isunique]

First of all thank you all very much for the kind words. Yes, I do plan to be around for awhile. My husband won't be able to find ayone as good as I am, so I guess I have to stay and make sure he stays out of trouble. Besides he suffers from a seizure disorder, we never know when he might have a seizure and not come back. They imiatate TIA'S or baby strokes, he forgets everything, even who he is at times. I was fortunate that with both of my cancers, they found it in time to have a chance at firghting it. My Gallbladder cancer was found after I had it out, no treatment needed. My PCP is a gem. I had to have a RX renewed, he had to see me to make sure I still existed type of thing. He makes it a pratice to do a yearly chest x-ray of all his patients that smoked. My lucky day, it was caught while still in the early stage, 1B, T2 N0 M0. Treatment for me was borderline, 5 % greater chance of help with chemo, otherwise it was 50/50. I guess I am a little strange, I opted out of chemo. I go tomorrow night for a general check up and chest x-ray to my PCP, so hopefully that will come back okay. It was really strange, after we got the DX of lung cancer, I thanked him. He looked at me weird, he gave me a fighting chance to keep my sorry you know what around here for awhile.

With regards to being in the right place for being a nutso, I was a nut long before I had cancer. Large family I am one of 8 kids (6 are boys), school bus driver, married man with 3 kids, I had 1 kid, not bad right, except that 3 of them were teenagers. Plus, I am a Scifi freak. I have thoughts that run around in my mind that are just strange, like who was the first person to discover yeast and why did they think it was okay to eat (or did they get someone else to try it first. Have you ever thought about weird stuff like that.

Randy, I do the same thing in the evening and any other time I want to. I will be driving to work, and have some idiot try to be too friendly, I get a little upset and just say thank you for giving me the chance to have a bad day.

This is one awesome site and the people are terrific. I read as many of the posts that I can and find myself thinking about everyone and hoping they are okay.

To Carol H, you are one fantastic lady. I only hope that I have the courage (or at least the ability to give that impression), and carry myself the way you are.

Take care all and be well

PS

I was concerned that the moderators might find my comments a little to far off the wall. I just wanted to let them know ahead of time that it was okay if they wanted to do a write out thing to it.

[CaroleHammett]

To Carol H... I only hope that I have the courage (or at least the ability to give that impression), and carry myself the way you are.

Sarah:

One of the things I don't know is whether I truly am handling all of this with "aplomb," or if I am an Academy award winning actress!

In other words, I am quite aware of the possibility that my "calm, cool and collected" demeanor may be simply a cover-up for a case of massive denial, and until the end, I won't (can't?) know for sure. In the meantime, however, I'm sticking to the former position unless proved wrong! .

What I have asked of myself (and my family) is that I be allowed to die with grace and dignity, which means that even if I'm in denial, no whining will be allowed (I just hate whiners! )!

The most important thing I have learned here in our on-line community so far is that while many of us may be in denial to one extent or another, there are very few (any?) whiners on this board. Instead, I've met some of the bravest people I have ever known in my life--with you most definitely included among that number.

Affectionately,

Carole

PS I'm technically still out on a "hall pass," so apologies to all to whom I still owe responses.

[Dollfinn]

Sarah~

I have had to plan my funeral not once but twice! One plan included a big picture screen outside the funeral home ( like the ones they have at concerts) So people could ogle, say they were there, and not bother my family!

I am a nurse of 33yrs. so I have the true inside scoop. Most final efforts are made for the caregivers peace of mind. So as a patient I feel I can at least meet them 1/2 way, so they dont feel like crap after I croak. I am the morphine queen when a person gets to the start of "their Journey" that is in keeping with the dignity issue. If you werent a moaner or groaner you whole life long, why pick up a bad habit at this point of your life?

And the noisy compressor, that forces air into lungs that are sick and can not accept the oxygen. I have made it clear, turn the darn thing off! It's noisy, it gives off heat, and I will be able to hear you better with out the noise.

Celebration of life, is a memorial that has been around for some time. I thought about a DJ but that might be pushing it. Big tent party to celebrate the times when life was one big party. Celebrate being a part of a great circle of people!

Yikes ....does that make me nuts?

Better then being a fruit cake.I'll leave when I'm good and ready, if exhaustion doesn't get me first! Mary

[jaminkw]

Sarah, I don't have a lot to add to the comments that proceeded me except that before lung cancer, I often commented to my family that I planned on living until I was 104. I picked that number because Rose Kennedy lived to 104 and it seemed like a good number. I'd settle for 94 now. My main reason for living so long was and is twofold, my grandson and because I want to see how it (our society and all that entails) turns out.

Judy in Key West

[CaroleHammett]

Mary: "Most final efforts are made for the caregivers peace of mind. So as a patient I feel I can at least meet them 1/2 way, so they dont feel like crap after I croak. I am the morphine queen when a person gets to the start of "their Journey" that is in keeping with the dignity issue. If you werent a moaner or groaner you whole life long, why pick up a bad habit at this point of your life? And the noisy compressor, that forces air into lungs that are sick and can not accept the oxygen. I have made it clear, turn the darn thing off! It's noisy, it gives off heat, and I will be able to hear you better with out the noise..."

My sentiments exactly.

Carole

I'd rather die while I'm living then live while I'm dead.--Jimmy Buffett

[Wendy]

Bravo Bravo Bravo - thanks to all for this thread!

I have not been blessed with the ability to express my feelings well. I can stumble all over myself trying to explain how I feel at times.

Dear fellow survivors I thank you for saying what I have felt so deeply but have been unable to express.

(Does that make sense??)

Hugs to all,

Wendy

[jaminkw]

Wendy, That makes perfect sense. I think it could be called community empathy.

Judy in Key West

[eYuppie]

I'll be the first to say that I don't have the answers in helping my kids to cope with what lies ahead for me. We've discussed faith, and hope, and grace, that life for me will continue in a wonderful and eternal form, and that life for them goes on until we are united once again.

I've discussed with them this wonderful writing by William Penn (1644-1718):

"We seem to give them back to Thee, O God, who gavest them to us. Yet, as thou didst not lose them in giving, so do we not lose them by their return. Not as the world giveth, givest Thou, O Lover of Souls. Life is eternal and love is immortal, and death is only an horizon, and an horizon is nothing save the limit of our sight. Lift us up, strong Son of God, that we may see further; cleanse our eyes that we may know ourselves to be nearer to our loved ones who art with Thee. And while Thou dost prepare a place for us, prepare us also for that happy place, that where Thou art we may be also for evermore."

As far as the funeral goes, I want it clear that I was not a saint -- that I had warts -- but that I loved deeply, with all of my flaws, the people in the room. In lieu of a final hymn, I want them to sing "Happy Trails to You Until We Meet Again".

eYuppie