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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@lls8000

Hello @babs1956, facing our own mortality is one of the most difficult things we encounter as stage IV cancer patients. We all know stories of people that were given an estimate on how long they have, and many people outlive those estimates. No one really knows, and we're all here temporarily. Tagrisso has shown great success in treating EGFR cancers. It's great to have options that didn't exist 10 years ago. I'm thankful for that in my own case.
Do you have support of friends or family? I find that they can be helpful, but only to a point. They are grieving the future loss of you too, and sometimes don't want to talk about the reality of us all passing on at some point in the distant future.

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Thank you so much, Lisa. Yes, I’m much happier now, what will be will be. I’m leaving it in the lord’s hands. Thank you again,Lisa.

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@babs1956

I also think about Seven years ago I had stage one B lung cancer. It has come back stage four I will be doing chemo and the pill Tagrisso. I was told it will prolong my life for a few years. I hope it’s worth it.

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Hello @babs1956, facing our own mortality is one of the most difficult things we encounter as stage IV cancer patients. We all know stories of people that were given an estimate on how long they have, and many people outlive those estimates. No one really knows, and we're all here temporarily. Tagrisso has shown great success in treating EGFR cancers. It's great to have options that didn't exist 10 years ago. I'm thankful for that in my own case.
Do you have support of friends or family? I find that they can be helpful, but only to a point. They are grieving the future loss of you too, and sometimes don't want to talk about the reality of us all passing on at some point in the distant future.

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I also think about Seven years ago I had stage one B lung cancer. It has come back stage four I will be doing chemo and the pill Tagrisso. I was told it will prolong my life for a few years. I hope it’s worth it.

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@mir123 -- guess what? I'd already forgotten my own details. I just pulled out my file folder to look for some specifics and see I had 37 radiation treatments (28 regular + 9 boost) not 27. No wonder I had side effects. So you may do much better with your 15 + 5 optional. Good luck!

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@mir123

Thank you! Your note came at the right time--I've just had the set up for radiation. I'll do 15 treatments, with another 5 optional. I have a huge supply of Calendula! I am worried about fatigue--particularly after treatment. I'm disabled with chronic pain and mobility issues--so fatigue is already my middle name. However, I am an expert at resting! I hope to feel well enough post treatment to take my husband to a music festival for his 70th birthday. But I know to get a nice hotel and personally to only aspire to one event per day. Thank you for the prayers and the encouragement. And for your kindness! Surprisingly, my radiation oncologist has been very collaborative and said simply that I can take 4 days off a any point in series, and of course quit if I can't go on. Th fact that I don't feel pressured is actually an incentive

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@mir123 you'll do great! I just needed someone to walk my dog for me during the worst of it. My treatment was 18 regular + 9 boost. With fewer treatments, hopefully your skin will not get too bad. When mine healed, it was darker than other skin, but that resolved in a few months. They assured me that their equipment is so precise these days that the radiation would miss my lungs. That made me feel better. Let us know how it turns out. Have fun at the music festival!

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@californiazebra

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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Thank you! Your note came at the right time--I've just had the set up for radiation. I'll do 15 treatments, with another 5 optional. I have a huge supply of Calendula! I am worried about fatigue--particularly after treatment. I'm disabled with chronic pain and mobility issues--so fatigue is already my middle name. However, I am an expert at resting! I hope to feel well enough post treatment to take my husband to a music festival for his 70th birthday. But I know to get a nice hotel and personally to only aspire to one event per day. Thank you for the prayers and the encouragement. And for your kindness! Surprisingly, my radiation oncologist has been very collaborative and said simply that I can take 4 days off a any point in series, and of course quit if I can't go on. Th fact that I don't feel pressured is actually an incentive

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@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.

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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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@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.

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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.

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@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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@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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