1. < Lung Cancer

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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

soupycampbell | @soupycampbell | Feb 21, 2023
In reply to @lls8000 "@soupycampbell, I agree that a visit with your GP is a good place to start. Having..." + (show)
@lls8000

@soupycampbell, I agree that a visit with your GP is a good place to start. Having all of the info related to what you are facing can give you great power. I respect that you have the power to make these decisions and have some control over what the remainder of your life will look like. That’s very brave.
People often talk about the strength of people that fight until the end, and ‘never give up’. I believe that knowing when to be at peace takes so much more strength! I wish you the very best.
I have stage IV lung cancer with metastasis to the liver. It is very much under control right now, but my type of cancer is incurable. I’m 52, and my current treatments are a breeze compared to some. So for now, I’ve chosen to live each day! That’s brought me a great feeling of freedom and peace. For now at least!, take care, Lisa

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Lisa, I’m so sorry. You are so young yet, my daughter is 54. I’ve always said I would be happy to give my life to someone younger so they can enjoy theirs. Yes, I’ve been at a loss for lack of info. I just would like straight up truth and what to expect. I tried to donate my body to the University of BC and apparently if it’s metastasized they can’t except it. I thought maybe I could do some good! I would imagine with last years Desmoplastic Melonoma on my head that would confirm it. I will say a prayer for you and hope you can hold it off for several years. I truly appreciate your answering and your message.
Joan

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createyourownmerit | @createyourownmerit | Feb 23, 2023

This isn’t bizarre at all. I see your thoughts as normal and practical. My husband was diagnosed with a rare bone cancer and had two stem cell transplants. He hovered near death multiple times, but miraculously made it through. I say miraculously because the Drs called it that. That said, he lives on with multiple complications and I think about him dying every day. Someone told me once that when your spouse has cancer they die every day. I understand that sentiment. That said, like others here we’ve chosen to live every day fully. When my husband got a call from a Dr with the news of how to treat his third cancer, again at the top of the scale serious, we asked if he could hold on for just one moment: we needed to get out of the wind so that we could hear him. We were at the Grand Canyon. Live your life without shame. Plan ahead, put things in order, breathe, and thank God for this new day. You are still here for a reason.

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1 reply
Merry, Alumni Mentor | @merpreb | Feb 23, 2023
In reply to @createyourownmerit "This isn’t bizarre at all. I see your thoughts as normal and practical. My husband was..." + (show)
@createyourownmerit

This isn’t bizarre at all. I see your thoughts as normal and practical. My husband was diagnosed with a rare bone cancer and had two stem cell transplants. He hovered near death multiple times, but miraculously made it through. I say miraculously because the Drs called it that. That said, he lives on with multiple complications and I think about him dying every day. Someone told me once that when your spouse has cancer they die every day. I understand that sentiment. That said, like others here we’ve chosen to live every day fully. When my husband got a call from a Dr with the news of how to treat his third cancer, again at the top of the scale serious, we asked if he could hold on for just one moment: we needed to get out of the wind so that we could hear him. We were at the Grand Canyon. Live your life without shame. Plan ahead, put things in order, breathe, and thank God for this new day. You are still here for a reason.

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createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain a constant high of living fully day after day after day. I've had lung cancer, as many of you know for 25 years and I have never been able to continuously live life to the fullest. I just plain wear out. And I do still think about my own death and my dying. And I'm still scared.

I am presently trying to recover from SBRT treatment for 2 lesions in my middle lobe from radiation. I developed pneumonitis and am having an awful time with prednisone and getting my O2 above 90 during activity. In a call with my doctor last night I blurted out, "am I dying?"

Until that time I must have been subconsciously thinking this. It really snuck up on me. I'm always surprising myself with what comes out of my mouth but that one really jolted me.

For some strange reason, I don't seem to feel shame because I've lived with this for so long but it can take time to get to this level. Shame goes away after time I think because the longer we or someone else lives the more that we realize that we don't need to. Does this make any sense?

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4 replies
thisismarilynb | @thisismarilynb | Feb 23, 2023
In reply to @merpreb "createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain..." + (show)
@merpreb

createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain a constant high of living fully day after day after day. I've had lung cancer, as many of you know for 25 years and I have never been able to continuously live life to the fullest. I just plain wear out. And I do still think about my own death and my dying. And I'm still scared.

I am presently trying to recover from SBRT treatment for 2 lesions in my middle lobe from radiation. I developed pneumonitis and am having an awful time with prednisone and getting my O2 above 90 during activity. In a call with my doctor last night I blurted out, "am I dying?"

Until that time I must have been subconsciously thinking this. It really snuck up on me. I'm always surprising myself with what comes out of my mouth but that one really jolted me.

For some strange reason, I don't seem to feel shame because I've lived with this for so long but it can take time to get to this level. Shame goes away after time I think because the longer we or someone else lives the more that we realize that we don't need to. Does this make any sense?

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I am overwhelmed by your post and all that you have suffered. But shame? Absolutely not. To make plans about your future life, whatever they are, is not shameful. It is showing good sense and consideration for your loved ones. Good for you and keep on walking - one foot in front of the other.

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1 reply
Merry, Alumni Mentor | @merpreb | Feb 23, 2023
In reply to @thisismarilynb "I am overwhelmed by your post and all that you have suffered. But shame? Absolutely not...." + (show)
@thisismarilynb

I am overwhelmed by your post and all that you have suffered. But shame? Absolutely not. To make plans about your future life, whatever they are, is not shameful. It is showing good sense and consideration for your loved ones. Good for you and keep on walking - one foot in front of the other.

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I agree, shame has no place, and if I worded my post incorrectly, I apologize.

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createyourownmerit | @createyourownmerit | Feb 23, 2023
In reply to @merpreb "createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain..." + (show)
@merpreb

createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain a constant high of living fully day after day after day. I've had lung cancer, as many of you know for 25 years and I have never been able to continuously live life to the fullest. I just plain wear out. And I do still think about my own death and my dying. And I'm still scared.

I am presently trying to recover from SBRT treatment for 2 lesions in my middle lobe from radiation. I developed pneumonitis and am having an awful time with prednisone and getting my O2 above 90 during activity. In a call with my doctor last night I blurted out, "am I dying?"

Until that time I must have been subconsciously thinking this. It really snuck up on me. I'm always surprising myself with what comes out of my mouth but that one really jolted me.

For some strange reason, I don't seem to feel shame because I've lived with this for so long but it can take time to get to this level. Shame goes away after time I think because the longer we or someone else lives the more that we realize that we don't need to. Does this make any sense?

Jump to this post

Oh absolutely it makes sense!!! And good for you for asking “Am I dying?” You needed an answer for that and you asked. 👏 Your level of living life to the fullest may not look the same as someone who heads out and hikes for miles, but you can live life to the fullest by choosing options that are sedentary. Read/listen to a book that makes you think? Learn to play chess? And remember: every one of us has horrible days. Give yourself permission for that, too.

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kmeikle1 | @kmeikle1 | Feb 24, 2023
In reply to @merpreb "createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain..." + (show)
@merpreb

createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain a constant high of living fully day after day after day. I've had lung cancer, as many of you know for 25 years and I have never been able to continuously live life to the fullest. I just plain wear out. And I do still think about my own death and my dying. And I'm still scared.

I am presently trying to recover from SBRT treatment for 2 lesions in my middle lobe from radiation. I developed pneumonitis and am having an awful time with prednisone and getting my O2 above 90 during activity. In a call with my doctor last night I blurted out, "am I dying?"

Until that time I must have been subconsciously thinking this. It really snuck up on me. I'm always surprising myself with what comes out of my mouth but that one really jolted me.

For some strange reason, I don't seem to feel shame because I've lived with this for so long but it can take time to get to this level. Shame goes away after time I think because the longer we or someone else lives the more that we realize that we don't need to. Does this make any sense?

Jump to this post

Thank you for your honesty.

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Merry, Alumni Mentor | @merpreb | Feb 24, 2023

I wish that there were not these two words--shame and guilt. They are destructive and demeaning and those are their purposes. "ok, folks. Let's just make you feel as bad as we can and make you suffer for it" It is so mean and controlling. We can't let this happen to us. I call out anyone who does to me. I have better things to do than this.

Right?

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cherip | @cherip | Feb 28, 2023

@olgamarie - I think it's natural to think about these things, but I would guess it's taking a toll on you. Shame is a heavy emotion - please accept that your emotions are valid and understandable.

Going down the rabbit hole of death before your time is really harsh on your soul, though.

I hope you can find someone to talk to. Having a terminal illness is a mind-slayer. I hope you are not holding those emotions by yourself. 🩵

REPLY
cherip | @cherip | Feb 28, 2023
In reply to @merpreb "createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain..." + (show)
@merpreb

createyourownmerit - I like your positive attitude. I find that it is very difficult to maintain a constant high of living fully day after day after day. I've had lung cancer, as many of you know for 25 years and I have never been able to continuously live life to the fullest. I just plain wear out. And I do still think about my own death and my dying. And I'm still scared.

I am presently trying to recover from SBRT treatment for 2 lesions in my middle lobe from radiation. I developed pneumonitis and am having an awful time with prednisone and getting my O2 above 90 during activity. In a call with my doctor last night I blurted out, "am I dying?"

Until that time I must have been subconsciously thinking this. It really snuck up on me. I'm always surprising myself with what comes out of my mouth but that one really jolted me.

For some strange reason, I don't seem to feel shame because I've lived with this for so long but it can take time to get to this level. Shame goes away after time I think because the longer we or someone else lives the more that we realize that we don't need to. Does this make any sense?

Jump to this post

@merpreb - makes total sense to me.

Really, we are all dying... most people just don't have a probable "how I'm going to die" diagnosis. I think it makes a difference. It did for me - I got very morose after watching my mom die of heart failure, and then 9 months later have my brother for hospice care, also for heart failure. Thank goodness my state has Death with Dignity, so I was able to stop thinking there. I felt like I had some control over how ill eventually die.

For me, the loss of control over my life has been debilitating. Medical professionals ought to be aware of those kinds of things. Each new diagnosis is a nightmare for a patient, but you get sent home to ponder and ruminate, with few resources- or, worse, they give outdated, incorrect information.

We are our own last defense.

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