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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Zebra | @californiazebra | Apr 3, 2023
In reply to @mir123 "Thank you! Unfortunately my NET is in my breast and all specialists (UNM, Mayo) agree it..." + (show)
@mir123

Thank you! Unfortunately my NET is in my breast and all specialists (UNM, Mayo) agree it should be treated as "ordinary" breast cancer. Sadly, this has poor results, and the World Health Organization says there are no protocols, and asks for research on the topic. The tumor is too fast growing for NET specific drugs. I was offered chemo, but declined due to kidney disease,
numerous co-morbidites, and preference. I've had a lumpectomy, but cancer is possibly still in a lymph node according to post op scan (pathology report notes only one other cancerous node). This may all be ordinary, but I'm 8 months in to diagnostics and a bit of treatment, including AI. I was pessimistic on diagnosis, and am now more so. I won't just walk away from doctors as my husband--a truly wonderful guy--wants me to at least listen to medical advice. Currently debating radiation. Each doc seems to go through a similar cycle: this is very rare and aggressive, this is totally ordinary, you need big gun treatment immediately, you need more treatment, etc. So emotionally & spiritually I've taken my attitude into my own hands, proceeding with common sense but little hope of cure. Instead, relying on family, friends, nature, creativity, travel (while I can), live music, reading, prayer, meditation, gardening, and being helpful when I can to give my life energy and meaning. Regards to you and this wonderful chat board.

Jump to this post

Wow @mir123, thanks for sharing that. I know NETs can be anywhere, but usually GI or lung. Haven't heard of breast till now. Sorry to hear you have an aggressive type. I had radiation for my aggressive recurrent breast cancer in my chest wall - 27 treatments. Had surgery first, but a positive margin. Radiation just felt like a minor sunburn for the first 15-20 treatments then the fatigue and skin issues suddenly kicked in. Treatments are quick and painless each day. In and out in 10-15 min. Like getting a scan. That was two years ago, so I don't remember the timeline exactly. The worst was over 2-3 weeks after the radiation was over. Glad I had it. Just really, really be proactive and apply the cream 2-3 times a day as suggested. I used Calendula cream from day one. Praying for your comfort, joy, decisions and miracle cure.

I love all the things you are doing to make the most of each day and life. Happy you have a supportive hubby.

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Apr 3, 2023
In reply to @californiazebra "I love your post and agree about life being so much better when you retire from..." + (show)
@californiazebra

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.

Jump to this post

Thank you! Unfortunately my NET is in my breast and all specialists (UNM, Mayo) agree it should be treated as "ordinary" breast cancer. Sadly, this has poor results, and the World Health Organization says there are no protocols, and asks for research on the topic. The tumor is too fast growing for NET specific drugs. I was offered chemo, but declined due to kidney disease,
numerous co-morbidites, and preference. I've had a lumpectomy, but cancer is possibly still in a lymph node according to post op scan (pathology report notes only one other cancerous node). This may all be ordinary, but I'm 8 months in to diagnostics and a bit of treatment, including AI. I was pessimistic on diagnosis, and am now more so. I won't just walk away from doctors as my husband--a truly wonderful guy--wants me to at least listen to medical advice. Currently debating radiation. Each doc seems to go through a similar cycle: this is very rare and aggressive, this is totally ordinary, you need big gun treatment immediately, you need more treatment, etc. So emotionally & spiritually I've taken my attitude into my own hands, proceeding with common sense but little hope of cure. Instead, relying on family, friends, nature, creativity, travel (while I can), live music, reading, prayer, meditation, gardening, and being helpful when I can to give my life energy and meaning. Regards to you and this wonderful chat board.

REPLY
1 reply
soupycampbell | @soupycampbell | Apr 3, 2023
In reply to @lls8000 "I'm glad you are feeling well. Enjoy Hawaii! I'm excited for you. I've never been, but..." + (show)
@lls8000

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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Thanks Lisa. I’ll sure try and enjoy every minute.
Take care 🙏

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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.

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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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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

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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.

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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

Jump to this post

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

REPLY
1 reply
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!

Jump to this post

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

REPLY
3 replies
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.

Jump to this post

@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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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.

Jump to this post

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.

REPLY
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