Talking Frankly about Living with Advanced Cancer

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.

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

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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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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@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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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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@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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@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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@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

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?

Liked by allisonsnow

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@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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Thanks @windwalker. To send a link, simply copy the link and pasted it into your message. When you copy YouTube links into a separate line in your message, the video will appear right in the message.

@allisonsnow, here is the link to Dr. Sood's Stress Free website http://stressfree.org/
There are so many videos to choose from. Teresa @hopeful33250 which Dr. Sood video might you recommend to start with?

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@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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Thanks going out to @windwalker and @ colleenyoung

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@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 @colleenyoung and @windwalker

I like

. This deals with Resilience, one of my favorite topics. Anything by Dr. Sood is great, you just can't go wrong with his talks.

Teresa

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@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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Good morning @margaretrivers

By now, you have probably had your PET scan. I hope that all went well.

I would love to hear from you when you have a moment to post.

Teresa

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I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that………..I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

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@cindylb

I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that………..I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

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Hello @cindylb I am sorry to read of your husband's health troubles. So difficult to face cancer and even a bit more so when you haven't a clue as to the cause, primary, etc. We are so accustomed to almost immediate answers and a pill to cure our ills in most cases.

I am also sorry to read of the other losses you have had in your family. It must beyond debilitating to manage all the grief.

My wife went for a second opinion when she was diagnosis with her brain tumor. it was a very wise move on our part. We found a doctor team with a much improved bedside manner, understanding, and support structure. We didn't get a lot of new information, but we ended up getting a far better healthcare team who stuck with us for her entire 14 years1

You are right in your concern that caregiving can become overwhelming. I, too, had to take over every aspect of our lives when my wife was diagnoses and through her war years with her cancer. I learned quickly to 'totem' our needs. Her needs were tops, after that each thing was weighed, valued, and often times discarded as nonessential. There were still far too many times I felt, and was, overwhelmed by all the demands.

I appreciated your comment regarding 'no regrets'. You might get a lift out of the attached photo. I saw this cheezy light at a discount store and had to buy it. I, too, wanted no regrets when it all ended. Sadly, it is my personal opinion that it is impossible to be a caregiver and not come away from the experience with absolutely no regrets. I regret I let some things slide I had to, I regret some of the times I got too short tempered due to the stress, etc. That's why I have this light. I tap it on when the doubts about what I did and didn't do creep into my mind. I remember to look at it all in its entirety, where on balance I can say the sign is right. It's the best we humans can do.

Strength, courage, and peace!

NoRegretsLight

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