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.

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ellengrubb | @ellengrubb | Mar 20, 2023
In reply to @soupycampbell "I so totally agree with you! I have no idea at this point where I am..." + (show)
@soupycampbell

I so totally agree with you! I have no idea at this point where I am as far as time left but I know I’m done with biopsies etc and feeling like crap after them and getting weak. I just want to be my normal active self (before tests) and enjoy my life the best I can for as long as I can! I’m 85 and just bought myself another (much less powerful motorcycle) more like a scooter but goes faster. So hoping this weakness goes away soon. Good luck to you and prayers you get lots of good quality time!

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You go girl!!!! 🏍️

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Zebra | @californiazebra | Mar 31, 2023

I've had stage IV breast cancer for 2.5 years, other medical issues and scary side effects from meds, but I still have decent quality of life. I tend to think about what all I need to take care of before I go so my son won't have to do it. I've taken care of and organized all the paperwork, cleaned out closets of excess stuff. I even have a stack of letters I've written and dated to those closest to me to go out after I've passed or maybe if I'm in hospice, but I wanted to have something written prepared in case something happened suddenly. I don't delay in writing kind letters and notes now, but some things are better said at the end or might worry people if I sent the letters now. My last "need to do" is to do something with the thousands of photos and get them organized and down to a more reasonable amount. Due to fatigue, getting through my list has taken longer than I had hoped. I do make sure I'm enjoying my days and having some fun in between tasks. I don't dwell on it all, but try to use the advanced notice to my advantage. I feel lucky in that respect.

You have no reason to feel ashamed. Just allow yourself to enjoy life to the fullest while you're taking care of business. Let people remember the best version of you laughing and smiling. Prayers for you.

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Zebra | @californiazebra | Apr 2, 2023
In reply to @soupycampbell "I so totally agree with you! I have no idea at this point where I am..." + (show)
@soupycampbell

I so totally agree with you! I have no idea at this point where I am as far as time left but I know I’m done with biopsies etc and feeling like crap after them and getting weak. I just want to be my normal active self (before tests) and enjoy my life the best I can for as long as I can! I’m 85 and just bought myself another (much less powerful motorcycle) more like a scooter but goes faster. So hoping this weakness goes away soon. Good luck to you and prayers you get lots of good quality time!

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@soupycampbell I love your screen name. It made me smile. I love that you bought a scooter and plan to make the most out of the time you have left. It seems you made a good decision. Prayers for you. Enjoy!

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1 reply
Zebra | @californiazebra | Apr 2, 2023
In reply to @mir123 "I'm obviously in a minority, but I'm fine thinking about death. When I first got a..." + (show)
@mir123

I'm obviously in a minority, but I'm fine thinking about death. When I first got a poor prognosis--neuroendocrine tumor 8 months ago--I immediately pre-paid and pre-planned my funeral. I come from an immigrant family, and was raised to not burden the family financially by ignoring these things. I bought a plot almost 30 years ago, when I was in my early forties. I've always liked graveyards--the peacefulness, the urban oasis, the history and sometimes famous people buried there. I'm a great fan of Harriet Tubman, and once visited her grave and brought flowers.
That said, I'm interested in "life to its fullest." We can try to remember that sadness, exhaustion, even dullness are part of life. To me, being a person--being myself--is the fullest. I almost died when I was 21, when I first learned this. Now, as I currently feel pretty good, I see my friends, dote on my husband, walk, read, write, do a bit of freelance in my field, dance, pray, hang out with daughter & grand baby, take road trips, go to concerts, am out in nature...it's beautiful, and I love it. I've basically retired from "shoulds." I'm quite aware of mortality, but the last six months--once I got over the initial shock and made treatment decisions--have been among the happiest in my life. Yes, I'm also worried and concerned. But this is very special. Best regards to all on this chat.

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I love your post and agree about life being so much better when you retire from shoulds . Enjoy your time and blessings. Haven’t read you NETs story anywhere but hope you are seeing NETs specialists. Prayers for you.

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1 reply
Zebra | @californiazebra | Apr 2, 2023
In reply to @ellengrubb "I agree with mir123 and quimbie. My prognosis is 5 months. I’ve chosen quality of life..." + (show)
@ellengrubb

I agree with mir123 and quimbie. My prognosis is 5 months. I’ve chosen quality of life over chemo & other drugs that have unpleasant side affects and very low longevity rate. I feel fine at this stage, it know I won’t always feel this good. I’m 75 & have lived a good life, made a difference in other’s lives and continue pouring into others.
I am a Christian and look forward to my new home in heaven.

My Living Will has been updated, mortuary insurance in place, funeral ‘suggestions’ written, contact list in a spreadsheet, PowerPoint of my life nearly completed, individual letters to my children and grandchildren almost ready to share with them individually.
Ok, so that’s all a bit OCD!
As the weather clears and warms, I expect to be outside and active & interactive. So, having this tedious stuff out of the way, PERHAPS I can relax. (That’s tough for us OCDers 😄)
I am at peace with my lot.

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@ellengrubb It sounds like you have a good plan and are taking care of business. We OCDers get things done. Prayers for you. Enjoy your time.

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soupycampbell | @soupycampbell | Apr 3, 2023
In reply to @californiazebra "@soupycampbell I love your screen name. It made me smile. I love that you bought a..." + (show)
@californiazebra

@soupycampbell I love your screen name. It made me smile. I love that you bought a scooter and plan to make the most out of the time you have left. It seems you made a good decision. Prayers for you. Enjoy!

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Thank you so much. Yes, last thing I was told s Few days ago when I pushed for answers was depending whether they go other organs I should have months to a year and because I am in such good shape possibly longer. My daughter had to go to Hawaii (with regards to her business) and I’m going with her tomorrow! Haven’t been there for several years now so that will be nice. I live in White Rock , BC which is close to the ocean and usually pretty warm by now but it’s been unseasonably cooler. I will enjoy the heat.
All the best to you and prayers being sent! Keep us informed.
Joan

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3 replies
Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 3, 2023
In reply to @soupycampbell "Thank you so much. Yes, last thing I was told s Few days ago when I..." + (show)
@soupycampbell

Thank you so much. Yes, last thing I was told s Few days ago when I pushed for answers was depending whether they go other organs I should have months to a year and because I am in such good shape possibly longer. My daughter had to go to Hawaii (with regards to her business) and I’m going with her tomorrow! Haven’t been there for several years now so that will be nice. I live in White Rock , BC which is close to the ocean and usually pretty warm by now but it’s been unseasonably cooler. I will enjoy the heat.
All the best to you and prayers being sent! Keep us informed.
Joan

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I'm glad you are feeling well. Enjoy Hawaii! I'm excited for you. I've never been, but it's on my list. Take care, Lisa

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1 reply
Zebra | @californiazebra | Apr 3, 2023
In reply to @soupycampbell "Thank you so much. Yes, last thing I was told s Few days ago when I..." + (show)
@soupycampbell

Thank you so much. Yes, last thing I was told s Few days ago when I pushed for answers was depending whether they go other organs I should have months to a year and because I am in such good shape possibly longer. My daughter had to go to Hawaii (with regards to her business) and I’m going with her tomorrow! Haven’t been there for several years now so that will be nice. I live in White Rock , BC which is close to the ocean and usually pretty warm by now but it’s been unseasonably cooler. I will enjoy the heat.
All the best to you and prayers being sent! Keep us informed.
Joan

Jump to this post

Joan, I love that you are going to Hawaii! One of my favorite places, but it has been a long time. So beautiful! It will bring you peace and, yes, warmth. Even California has been unusually cool this winter. Enjoy!!! Prayers for you, Lori

As for your lung NETS, I still want to be sure you've seen a NETs specialty team. There is a support organization in Los Angeles LACNETS.org with tons of info, links, videos of NETs specialists around the US giving talks about various treatments. NETs is treated very differently than other cancers and the patients tend to survive much longer. There is also a different treatment plan for each patient -- not standard like common lung cancer. It's more operable even in organs. It's a rare cancer with programs only at top cancer facilities. If your decision to stop treatment is just a quality of life issue and not wanting more surgeries or meds then I understand. I expect to make that same decision at some point. But my local oncologists were not familiar with NETs so I to go UCLA (Los Angeles) for NETs treatment and my local oncologist for unrelated breast cancer treatment. They coordinate. Not sure about Canada, but there is a NETs specialty team in Seattle, WA -- a couple hours from you. I hope the LACNETS site will be helpful.

REPLY
Zebra | @californiazebra | Apr 3, 2023
In reply to @soupycampbell "Thank you so much. Yes, last thing I was told s Few days ago when I..." + (show)
@soupycampbell

Thank you so much. Yes, last thing I was told s Few days ago when I pushed for answers was depending whether they go other organs I should have months to a year and because I am in such good shape possibly longer. My daughter had to go to Hawaii (with regards to her business) and I’m going with her tomorrow! Haven’t been there for several years now so that will be nice. I live in White Rock , BC which is close to the ocean and usually pretty warm by now but it’s been unseasonably cooler. I will enjoy the heat.
All the best to you and prayers being sent! Keep us informed.
Joan

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Joan, I think I mixed up your cancer history with someone you replied to so I guess the NETs info doesn't apply to you. Have fun in Hawaii! Lori

REPLY
Zebra | @californiazebra | Apr 3, 2023
In reply to @mir123 "I'm obviously in a minority, but I'm fine thinking about death. When I first got a..." + (show)
@mir123

I'm obviously in a minority, but I'm fine thinking about death. When I first got a poor prognosis--neuroendocrine tumor 8 months ago--I immediately pre-paid and pre-planned my funeral. I come from an immigrant family, and was raised to not burden the family financially by ignoring these things. I bought a plot almost 30 years ago, when I was in my early forties. I've always liked graveyards--the peacefulness, the urban oasis, the history and sometimes famous people buried there. I'm a great fan of Harriet Tubman, and once visited her grave and brought flowers.
That said, I'm interested in "life to its fullest." We can try to remember that sadness, exhaustion, even dullness are part of life. To me, being a person--being myself--is the fullest. I almost died when I was 21, when I first learned this. Now, as I currently feel pretty good, I see my friends, dote on my husband, walk, read, write, do a bit of freelance in my field, dance, pray, hang out with daughter & grand baby, take road trips, go to concerts, am out in nature...it's beautiful, and I love it. I've basically retired from "shoulds." I'm quite aware of mortality, but the last six months--once I got over the initial shock and made treatment decisions--have been among the happiest in my life. Yes, I'm also worried and concerned. But this is very special. Best regards to all on this chat.

Jump to this post

LACNETS.org has a lot of info and contacts, videos from NETs experts regarding treatments for neuroendocrine cancer. Treated very differently than other cancers. It has a better survival rate than most cancers if treated properly. I hope that site has some useful information for you. It's rare so most doctors are not familiar with neuroendocrine cancers. A NETs specialty team like Mayo or other top cancer centers might be worth while for a second opinion. Prayers for you.

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