Ashamed: I think about (and plan for) dying. Do you?

Posted by olgamarie @olgamarie, Feb 7, 2021

Hi, did anyone, after there cancer and COPD diagnosis start to think about dying? After almost four years, I still do, all the time. Planning my funeral, how to leave my children, how it will be to be in a coffin. Bizarre, I know.

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@rits

Hi there fellow copder. Yep it's a pia but it is what it is.
I have severe copd and if that's not enough, my poor decrepit lungs also have bronchiectasis and pseudomonas (a nasty drug resistant bacteria)
I have lots of sputum and spend an hour every morning and another one every evening doing airway clearance . Don't ask.
You don't want to know!
But with all that I don't desaturate and consequently am not on supp O2. I just helped my housekeeper put the laundry away and am sitting here recovering my breath. O2 96% on room air. Sometimes I wish I could turn it up and breathe better.
( housekeeper? Yes. I started saving for home health care when I was diagnosed with severe copd in 2010. No nursing home for me. Without being able to travel or eat out or spend much money there's plenty in that account. I live alone and no way could clean this place)

I also have had two cancers, the second one caused by extensive radiation for the first one and have terrible digestive issues as a result .

But with all that and a clearly limited quality of life, I do have pleasure in my life. There is so much to watch and to read . And so many interesting people to meet on support groups .

And silly optimist that I am I always hope it will get better. Summer is almost here.

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@rits- Good morning. Hope is gold. It is what keeps us going. I think that success stories give us hope. Everyone on Connect, in one way or another, gives us hope! Is it a feeling of trust? Or maybe it is a feeling of expectation and desire for a certain thing to happen? Or the possibility or likelihood of some future event occurring because it has in the past with someone?

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@merpreb

@ta52- @olgamarie- @marshall8318 - Good morning. I think that there might be some confusion here. Making end-of-life decisions does not mean that you are choosing death. It means that you are living well, taking care of business. Some of this is similar to buying car insurance. It guarantees certain things. Now if you were a 20-year old I would really wonder why you would do this. I'm guessing that you aren't!

By making a will, even buying cemetery plots makes good sense. This way you make the decisions and there will be fewer confusing decisions for your heirs to make.

When my niece was killed I bought up all the plots around her that I could so that whoever wanted to be near her could. I am a 23+ lung cancer survivor from 2 different lung cancers, 2 open chest surgeries, 2 SBRT's, PTSD, COPD, and various other annoyances. Making end-life decisions, as difficult and morbid as they were, gave me peace of mind. It was a good day of living when I made my decisions.

There is no shame in thinking about dying. Survival is a natural instinct and for a healthy life, I think that those thoughts mature us. Sometimes it's difficult to know what our place is in the world. For me, I had to look at my whole life and that meant both ends.

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Thank you for those words. I recently found out my lung cancer has spread to my liver. All I hear and see in peoples faces is "oh with a sad face" This concerned me as I am stage 4 lung cancer and was doing reallyt well 3 months ago. I immediatly went into depression. But I want to be upbeat and happy, Working on paperwork is a struggle but am getting it done. I have a Social Worker helping me. So any words of encouragement will be welcome. 23 years is what I saw in your comment. I feel better now!

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@tahoerox99

Thank you for those words. I recently found out my lung cancer has spread to my liver. All I hear and see in peoples faces is "oh with a sad face" This concerned me as I am stage 4 lung cancer and was doing reallyt well 3 months ago. I immediatly went into depression. But I want to be upbeat and happy, Working on paperwork is a struggle but am getting it done. I have a Social Worker helping me. So any words of encouragement will be welcome. 23 years is what I saw in your comment. I feel better now!

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@tahoerox99- Twenty-four next month! I do think that wanting to be positive and happy will see you through what might be a tough journey ahead. It will help propel you to just go forward, not spend too much time on what might be but what can be. That is the gold, the path that is lit to show you the way.

Having help will lessen your stress and give you more energy. What really helped lessen my sadness and depression was telling people about my journey. Would you like to do that here, to give hope to others? Help them on their journey as we go along on yours? Isn't that right, @richcolleen?

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@merpreb

@tahoerox99- Twenty-four next month! I do think that wanting to be positive and happy will see you through what might be a tough journey ahead. It will help propel you to just go forward, not spend too much time on what might be but what can be. That is the gold, the path that is lit to show you the way.

Having help will lessen your stress and give you more energy. What really helped lessen my sadness and depression was telling people about my journey. Would you like to do that here, to give hope to others? Help them on their journey as we go along on yours? Isn't that right, @richcolleen?

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Can’t get in this new system. Sign in with my Mayo password and doesn’t work but can get in to see test that were just completed? Go figure

Colleen

This I-pad changes words without me knowing!

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@richcolleen

Can’t get in this new system. Sign in with my Mayo password and doesn’t work but can get in to see test that were just completed? Go figure

Colleen

This I-pad changes words without me knowing!

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Hi Colleen, since you were able to post this message, that means you are signed in. I think what you are experiencing is an annoying bug where the a screen pops up over the website telling you to sign in when you're already signed in. This happens to random iPad users. We're still trying to figure out why. For now, simply click the x to get rid of the popup. No need to sign in again.

I hope this helps so that you can write to @tahoerox99 with some encouragement. So great to see you here again.

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@richcolleen

Can’t get in this new system. Sign in with my Mayo password and doesn’t work but can get in to see test that were just completed? Go figure

Colleen

This I-pad changes words without me knowing!

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Think I’m in now!

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@richcolleen

Think I’m in now!

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Yes. I see your post. Welcome back, Colleen.
Please read recent comments starting here: https://connect.mayoclinic.org/comment/631301/
I look forward to your update.

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In dreams I have seen myself being in my glorified body that Jesus will provide me when mortality puts on immortality (because I have chosen Him for my prize now and in the life eternal that is to come later on).

FYI: when one passes away their spirit departs from their body to where they have no awareness of being in a coffin.

Do you have life insurance? Whether or not you do, a friendly suggestion is to think about eternal life insurance. If you don’t already have it, Jesus offers it for free (paid in full) but just requires we accept it and Him. 😇

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I too worry about final preperations. I cannot figure out what to do first. I just as you am looking for some answers. Reaching out to several services. Sometimes frustrated about them never getting back to me. Not having the energy to do any of it. Worried about my kids being sad after I go. I have lung cancer and wear oxgyen. I can't cry because it is hard to breath. I am angry at my husband for his lack of caring. I don't think that is going well at all. Sorry but wanted you to know your not alone. Look up a site called "MyLungCancerteam" Lots of info and support. They at least listen. Good Luck.. If I figure any of this out I will let you know. Or just let it all go!! Bless you!

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@tahoerox99

I too worry about final preperations. I cannot figure out what to do first. I just as you am looking for some answers. Reaching out to several services. Sometimes frustrated about them never getting back to me. Not having the energy to do any of it. Worried about my kids being sad after I go. I have lung cancer and wear oxgyen. I can't cry because it is hard to breath. I am angry at my husband for his lack of caring. I don't think that is going well at all. Sorry but wanted you to know your not alone. Look up a site called "MyLungCancerteam" Lots of info and support. They at least listen. Good Luck.. If I figure any of this out I will let you know. Or just let it all go!! Bless you!

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Hello @tahoerox99 I read your post with interest. Thankfully my wife and I did our final arrangements planning while she was still mentally able. It may not be for everyone, but here’s what we did.

We started with our medical decisions — HIPPA, DNRs, etc. Then we moved on to our basic final arrangement desires, leaving the who, when, etc. to the survivor. So we did things like wanting cremation, a celebration of life (no funeral), etc. She even picked her songs, eulogists, music, where to spread her ashes, etc. without worrying about what company would do it. She then gave several meaningful gifts to family and friends while she was alive and could share their meaning and stories with each recipient. Then we did the legal stuff — wills, marital trust, estate plans, POAs, and durable medical POAs.

It was hard, especially to start, but incredibly valuable to her, me, and our children.

Strength, Courage, & Peace

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