End of life issues for patients?

[Guest]

I have thought a lot about the posts from Fay A. and from DeanCarl and the responses to both. I just got my DX--inoperable NSCLC. --just as those posts were made.

It's hard for me to define what it means to "fight" this disease, expecially considering the fact that I have been bluntly told I will not win.

I am in no way prepared to die, whatever that means. I have have never thought that much about dying, so I feel pretty inept about it and not even sure what it means to prepare to die--and is it possible to "prepare to die" and to fight at the same time? Or should I only fight for some dignity and to make sure that I have the best palliative care possible.

Isn't that the crux of the two posts--isn't that the fine line that all late stage lc and other cancer patients walk--fight and prepare to die--seems impossible to do--schizophrenic.

Mostly, I fear suffering, and there are plenty of reasons to fear it with this disease. That doens't seem to be something that is talked about much on this site, so I fear even mentioning it.

I fear for my caregiver. I fear for my children, and really want no one to witness my suffering. As the sick person, I feel enormous responsibility for causing the emotional anguish of my husband and adult children. It overwhelms me and makes me not want to have this last very long, so that they can move on with the least amount of damage possible. These are not happy thoughts and so I am going to post as a guest because I even fear the response of people here I have come to cherish.

Maybe I am the only one who finds the need to "talk" about preparing to die and the emotional aspects of what we as patients are dealing with, I don't know. I would like to find out. I know that some days, I can hardly believe it myself. I feel fine, not good, but not like I am really really sick, so there is denial aspect of it. Then there are times when I am paniced etc.

Where can we, as patients, go to talk about our end of life issues? Is there some other place on the Internet?

Well, I have tried to be honest about this, and hope that I can gather some feedback and advice.

Thanks

[Don Wood]

Everything you have described I am certain we all here are going through. Luckily, Lucie and I talk openly and frankly, so we air a lot of those concerns. We also have "buddies" we can each talk with on a regular basis to air more. I believe in doing what we can to fight the disease, but at the same time do those things to prepare for the end (like getting our wills and paper work done and funeral arrangments for both of us in place). We are going to live as best we can with what time we have, and live as though today is the last but believing there will be more. Glad you expressed yourself here. Please do continue to feel free to do so. Blessings. Don

[gerbil runner]

When my mother was first hospitalized, the initial dx was pancreatic cancer, stage IV. Our initial thoughts were about hospice.

I read, and recommend, "The Needs of the Dying". Perhaps just reading that book (or a similar one) and passing it around to close family will help you talk about what you want to do.

This is a very difficult time, because you have not yet decided how to approach your disease. The uncertainty only makes everything seem worse. One you decide upon a plan, you will at least have that to focus on.

As for end-of-life issues, you may want to see what hospice facilities are available to you. In my area, there is an in-patient facility which is only for hospice. It is family-oriented (real furniture, no visiting hours, pets can stay) and may be an option for you if you are concerned about the pressures on your caretakers.

Many people do remain at home. If that is what you really want, then do it. There's all kinds of help available for the caretakers.

And in the meantime, LIVE! You aren't dead yet, and may not be for a long time. Think about how you want to live in the immediate future, and let those thoughts guide your choices.

As for whether or not to accept treatment, there is no right or wrong answer - only YOUR answer.

[DeanCarl]

Dear Guest,

As far as I'm concerned you can talk about those issues RIGHT HERE! If you don't feel real comfortable posting in "public", you can PM me or e-mail me if you wish.

But don't be afraid to "lay it all out" on this board. You saw the responsis Fay and I got to our posts. These people CARE! There was a question about end of life issues posted not to long ago that got a TON of wonderful, informative and supportive responses.

Of course you feel "inept" about the POSSIBILITY of dying. Who doesn't? It's not something we get to "rehearse" a few times before we have to face the real thing. For me it's using my two favorite sayings: "One GLORIOUS day at a time" and "I'll figure it out when I get there".

As for "fighting" and "prepairing" at the same time, Don pretty much said it. Live life for today with hope in your heart for tomarrow.

Both Fay and I are fighters. She fights every day for one more day, one more hour, one more treatment in the VERY REAL hope that she will see a day when she'll here the words "No Evidence of Disease!". I pray every day for her and others like her they get to hear those words.

I, on the other hand, fight every day for a certain quality of life. You can tell me I'm dying, but don't treat me like I'm dead. That's why I've pushed so hard for my mobility, among other things.

As for my family: I've been VERY open and honest with both my wife and my adult daughter. It's been hard at times, but both have come to realize, as have I, that I am NOT "guilty" of becoming sick. I did not set out, many years ago, to "get cancer". And they understand that. For that I am truely grateful.

Like I said, PM me if you want. Or post here. WE do this together, no matter the situation.

Dean

[Snowflake]

Wow, those two "silver foxes" imparted a lot of wisdom...and Jen had some good advice on hospice.

My turn...

The woman on the Cancer Treatment Centers of America ads had very, very small odds of surviving her advanced breast cancer. It had spread to her bones and she made friends in the hospital that eventually lost their battle with the disease. Vickie didn't. She wrote a book "There's No Place Like Hope" that you really should read. I believe her name is Vickie Gillespie... Point is that no matter how bad the odds, there's ALWAYS a chance, there's ALWAYS hope.

Please, don't just roll over and die. What legacy does that leave your spouse and adult children? Yes, "prepare" for the worst, make sure your affairs are in order - Will, Living Will, Advocacy, etc. Do all the legal BS that you wouldn't want your family to have to deal with while attending to grief... THEN, take a deep breath, and decide to live! YOUR choice, death with dignity or the no-holds-barred die trying... But don't JUST give up. Contact hospice when the time presents itself, decide on the perimeters and where/when things will happen.

Talk to your family. If you don't have "that kind of relationship", here's a chance to fix that! Pull them in, hold them to you and use that love to heal your soul.

I'm not sure how your family feels, but if it were my mother dealing with end of life issues, I'd make it a point to be there until the end and feel ultimately gypped if she didn't want me to be. Your children/family should pick the role they are to play, but they need to know the score.

Vent here, question here, find your treatment options, don't accept a "no hope" answer because it's WRONG. Be honest with yourself and decide on the road that is best for you. (I'm not sure I would take the word of someone who would "bluntly" tell you you're not going to win - this person may see inside your body, but not your very soul...)

You sure don't sound like someone ready to throw in the towel, you just sound like you've hit the ropes and received a bad surprise. Catch your breath and get back in the ring, we're in your corner!

Love,

Becky

[dadstimeon]

Hi Guest,

Sorry to hear that and it is a lot to take in at first. I was told the same thing that survival is rare at this point. But one still never knows. I choose to prepare myself not to die but to live. To enjoy life to the best of my abilities. Take one step and one day at a time. I did have to make adjustments and except things will never be the same. Will not be able to do a lot of things, and I’m limited to what I can do. Had a bit of a set back with my scans last week. It's a bump in the road not the end of the road. But I’m still here and plan on staying around. Not saying it is easy and not a challenge because it is hard. But it can be beaten. There are a lot of options out there today. Treatments, support groups, counseling etc. to help. Best not to go it alone. Also I did have to make sure everything is in order for my family if and when the time comes. We all worry about our families and what lays a head. That is understandable how you feel. Please do not blame yourself. Nobody deserves or wants lung cancer regardless of how one gets it. Feel free to talk about any of your concerns. Lots of people here willing to listen. Do not give up. Stay positive and focused. Be pro-active. Research everything you can. But you have to decide what type of fight you want and what is best for you. It’s an individual choice that should be respected by all. Do hope this helps. Peace, take care and God Bless.

Rich

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

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[Guest Laura]

Please don't take offence, but my stepdad use to quote Monty Python "I'M NOT DEAD YET!" I was able to spend a lot of time and really got to know him so much more the last two years when he was home going through chemo. I wouldn't trade that time for anything in the world.