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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

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

Terri Martin, Volunteer Mentor | @windwalker | Apr 20, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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@allisonsnow Hi Allison. I am Terri, a Mayo mentor from another group (lung disease) I saw your post asking about Dr. Sood. He is a doctor at the Mayo Clinic in Rochester. He heads up a dept for mental well-being, especially for those dealing with a chronic or life-threatening illness. Many of our members on Connect have benefitted from his insights and wisdom. There are many Youtube videos of him that you may find helpful. I just Googled Dr. Sood and they came up as choices. I would send you the link, but I do not know how yet. @colleenyoung can please help?

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allisonsnow | @allisonsnow | Apr 18, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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@vsinn2000 Thanks for typing exactly what I feel and I agree trying to juggle between what people think is exhausting. Friends you can distance yourself if you have to but family you had better keep lol....I actually have a seven year old grandson that has the best grasp of any of them. He tells me he knows I have cancer and that is why I might go to heaven sooner than we want. But as long as its not for a while yet and he gets to see me again in heaven he can accept that. Now his father(my son) knows I have this rare and deadly form of cancer but he really hasn't faced my dying at all. I don't think he realizes how close I have come on more than one occasion at least that he will acknowledge, he refuses to sit down and discuss it. Hoping I won't see you on here later tonight
Thanks to everyone for there help and support

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allisonsnow | @allisonsnow | Apr 18, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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for some reason Dr. Sood sounds so familiar .....is driving me crazy now trying to figure out why???? and my memory is not what it used to be !!!! lol I listen to Enya a lot when I need to relax I have been monitoring my blood pressure because out of the blue it has dropped into the basement and occasionally goes high (another problem for another day ) I only bring it up because when the readings get high I sit and try to calm myself but left to think is not good for me my mind wonders and then I worry. So I listen to music and that seems to help the most.
I also come here for some peace of mind and a place to put some of my worries. The feeling of family here helps so much.
Thanks for the hugs

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vsinn2000 | @vsinn2000 | Apr 17, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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Up all night is not a new thing for me. It's the time your brain goes to thoughts and places you don't want to go to while you're putting on that brave front for everyone else. I'm very fortunate to have a great friend who has been there and also sleeps very little at night. Friends, I think, are afraid to truly face what our diagnosis means. In my case, even a couple of the kids are still trying to convince themselves it's like a bad case of flu or something. Then of course the other kids get angry because of that. You can't change people's perception of what we go through, but just decide how much denial you can accept in your circle of friends. You'll exhaust yourself trying to make them understand or change their minds. Hang in there!

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Linda | @llwortman | Apr 16, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

Jump to this post

Dear Allison:
I am watching and thinking of you as a 10 year lung cancer survivor.
I encourage you to check out Mayo Clinic Dr Amit Sood, on line and read his Mindfulness and Resiliency articles or books and if you can listen to his powerful words of meditation.
I have learned the power of learning how to relax my mind, body, spirit and nervous system through his program and It has been remarkable as I have strived to beat the 17% chance of living after lung cancer diagnosis and surgery.

I live with this paced breathing program that is now on on my phone and it helps calm me accept life as I must live it
one moment and one day st a time.
You are in thoughts and prayers.
I am sending you kind cyber hugs.
lung cancer mentor
linda

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saltis | @saltis | Apr 16, 2018

Hello @margaretrivers, Wish you luck with everything. Hope you can do your PET-Scan today and everything goes just fine. Radiation was very effective, in two of my cancers. My body is a cancer-loving one so it is always looking for more challenges to keep on this adventure going on. Just keep calm & positive about this stage of your life. Remember the good in your life, the last laughters ”real ones” and enjoy them again. Love yourself and try to find positive aspects in every ”happening”. Even in the worse hour, if you look around there are so many beautiful things to enjoy. I do this when I feel deep down in the shit hole, sorry for the language, but I have been fighting cancer for the last 23 years and for the past 3 years I have been diagnosen with spread cancer stage 4. When I am in the deepest I look around me and a bird singing, a child’s laughter or a smile makes me feel alive. Have a nice day and good luck.

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Maureen, Alumna Mentor | @alpaca | Apr 15, 2018
In reply to @margaretrivers "No, I wasn't told how to manage diet to achieve lower bs except what I've been..." + (show)
@margaretrivers

No, I wasn't told how to manage diet to achieve lower bs except what I've been doing already; diabetic diet. but most foods taste bad to me.I've lost so much weight, dr, said eat whatrever I can

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That makes it harder. There was some good advice up thread a bit. I really hope you get your PET scan and radiation. Sounds as if you need more info about the PET scan.

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ginpene | @ginpene05 | Apr 15, 2018

Oh, Honey, I'm sad you don't eat. When I was on the chemo everything tasted like metal. But good luck with the PET scan. I'll be thinking of you. gp

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margaretrivers | @margaretrivers | Apr 15, 2018

No, I wasn't told how to manage diet to achieve lower bs except what I've been doing already; diabetic diet. but most foods taste bad to me.I've lost so much weight, dr, said eat whatrever I can

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