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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@flusshund

Hi Lisa, @lls80000,

When I read your post, I immediately thought of one friend who has emotionally distanced himself since my diagnosis. His wife, father, and mother all died of lung cancer. I know he mentally knows better, but when he looks at me, I can see the concern that he's going to lose someone else in his life to this disease. You're absolutely right that some of our friends and family are already grieving the future loss. One of my brothers also looks at me like I'm already dead.

For those who haven't found him yet, Matt Mewhorter is a certified therapist, cartoonist, and cancer survivor. He created the Cancer Owl when he was going through treatments. I use his cartoons, with his permission, in my presentations. Here's the one that's relevant to this thread: https://www.mattmewhorter.com/cancer-owl/dead.

Lisa, maybe you can answer a separate question I've had for a while. I see an "Add Photos/Files (optional)" box below this square I'm typing in, but I've never gotten it to work. I've also never seen an attached photo or file in a post. Does the option work? Is there something I'm missing?

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Mathew, I can answer the question about adding photos and files.
1. Click "Add Photo/Files
2. Click to upload a photo or file from your device.
File types allowed pptx, jpg, jpeg, jpe, png, gif, mp3, m4a, m4b, pdf, They must be less than 5 MB.

YouTube videos can also be added and will play within your message. See more tips in the Help Center https://connect.mayoclinic.org/help-center/ or write to me here: https://connect.mayoclinic.org/contact-a-community-moderator/

Back to the topic at hand: thanks for the introduction to Matt Mewhorter and the Cancer Owl. Humor can be so helpful at getting to the core of tough topics with friends and family.

Metthew, have you been able to talk with your brother or others about their fears of losing you? Do you bring the focus back to living life now?

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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.

Jump to this post

Hi Lisa, @lls80000,

When I read your post, I immediately thought of one friend who has emotionally distanced himself since my diagnosis. His wife, father, and mother all died of lung cancer. I know he mentally knows better, but when he looks at me, I can see the concern that he's going to lose someone else in his life to this disease. You're absolutely right that some of our friends and family are already grieving the future loss. One of my brothers also looks at me like I'm already dead.

For those who haven't found him yet, Matt Mewhorter is a certified therapist, cartoonist, and cancer survivor. He created the Cancer Owl when he was going through treatments. I use his cartoons, with his permission, in my presentations. Here's the one that's relevant to this thread: https://www.mattmewhorter.com/cancer-owl/dead.

Lisa, maybe you can answer a separate question I've had for a while. I see an "Add Photos/Files (optional)" box below this square I'm typing in, but I've never gotten it to work. I've also never seen an attached photo or file in a post. Does the option work? Is there something I'm missing?

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Yes, it’s a wake-up call. We know we all will die, but not “now”. My husband and I have made final arrangements, made sure all our financial accts have beneficiaries, and just saw a lawyer today to finalize our documents. But we don't plan on dying any time soon. Just now know everything is in order.

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@babs1956

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, it’s a roller coaster. Enjoy the highs! Let yourself feel the lows just long enough to process what’s there, but don’t stay too long. Hugs!

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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.

Jump to this post

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.

Jump to this post

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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