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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.

jo16 | @jo16 | Apr 17, 2022

I find it helps to narrow my scope and stick with short distances and small time frames. When people start making elaborate plans and grand gestures I know they mean well but they don't realize we pay for these things with more exhaustion. I am a baseball fan and made it to some games last year but now I watch on my TV with my son or a friend over. And my husband who is always at my side...I think I can find happiness by keeping it small and the world will have to take care of the big things from now on. Thank God I lived a full life. No regrets and I did what was really important to me and I've let the rest go. I wish you all peace and comfort...

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 17, 2022
In reply to @leighs2011 "i think it helps to read how other people are trying to deal with the same..." + (show)
@leighs2011

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

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@leighs2011 I am 70 years old and was diagnosed with endometrial cancer at age 67. It's hard not to compare my diagnosis and story with others and feel that maybe my cancer and journey are not all that bad. A psychiatrist once told me that this is my journey and my life and so feeling the way I did at the time about my circumstances is valid. I did not understand that at the time but I do now. I feel blessed to have insurance and the means to get the cancer care that I do. One day at a time, sometimes one hour at a time.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 17, 2022
In reply to @anto1nette "My best friend lost her husband to bone cancer within the last year. NOW my husband..." + (show)
@anto1nette

My best friend lost her husband to bone cancer within the last year. NOW my husband has pancreatic cancer. The best advice she gave me was ONE DAY AT TIME. It’s a long journey.

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@anto1nette Welcome to Mayo Clinic Connect. It must be distressing to be placed into this new role, even if you have taken some training for it.

There is a group here on Mayo Connect that is for caregivers. Perhaps you will find a few conversations that will "speak to you" and offer ideas and support?
https://connect.mayoclinic.org/group/caregivers/
Ginger

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anto1nette | @anto1nette | Apr 16, 2022
In reply to @leighs2011 "i think it helps to read how other people are trying to deal with the same..." + (show)
@leighs2011

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

Jump to this post

My best friend lost her husband to bone cancer within the last year. NOW my husband has pancreatic cancer. The best advice she gave me was ONE DAY AT TIME. It’s a long journey.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 16, 2022
In reply to @leighs2011 "i think it helps to read how other people are trying to deal with the same..." + (show)
@leighs2011

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

Jump to this post

@leighs2011 Yes, I agree. Each person's journey is unique, and in sharing we can reveal what works for us. So many times I will read a post, and have an "ah-ha!" moment, and be able to add another tool to my arsenal as I navigate my own path.

Do I say "congratulations" for working this many years with pancreatic cancer? It is indeed a sneaky cancer, that one! I really like your attitude, and am wishing nothing but what works best for you.
Ginger

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leighs2011 | @leighs2011 | Apr 16, 2022

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 5, 2022
In reply to @upstairs17 "JUST PEOPLE WERE SMILING WHILE GETTING THERE MEDICIEN AT CVS, AND ALTHOUGH MOST WERE FACED WITH..." + (show)
@upstairs17

JUST PEOPLE WERE SMILING WHILE GETTING THERE MEDICIEN AT CVS, AND ALTHOUGH MOST WERE FACED WITH WITHOUT THERE MEDIECIN THEY WOULD SUFFER PAIN AND OTHERS DEATH (SILENTLTY ,UNDERSTOOD) AS I WAITED FOR MINE PEOPLE SAID HI AND THAT MADE ME SMILE . I SUSPECT THAT THIS IS WHY LIFE MEANS SO MUCH AND IT MADE ME FEEL IMPRESSED OF HOW MUCH PEOPLE LOVE AND DONT EVEN KNOW HOW MUCH A SIMPLE SMILE OR HELLOW IS LIFE GIVING TO OTHERS WHO DONT KNOW THIS SECRET.

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That's so true, @upstairs17 I read this yesterday somewhere else by @rambler:
Life is like a mirror.
If we frown at it, it frowns back.
If we smile. it returns the greeting.
People respond the same way.

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upstairs17 | @upstairs17 | Mar 4, 2022

JUST PEOPLE WERE SMILING WHILE GETTING THERE MEDICIEN AT CVS, AND ALTHOUGH MOST WERE FACED WITH WITHOUT THERE MEDIECIN THEY WOULD SUFFER PAIN AND OTHERS DEATH (SILENTLTY ,UNDERSTOOD) AS I WAITED FOR MINE PEOPLE SAID HI AND THAT MADE ME SMILE . I SUSPECT THAT THIS IS WHY LIFE MEANS SO MUCH AND IT MADE ME FEEL IMPRESSED OF HOW MUCH PEOPLE LOVE AND DONT EVEN KNOW HOW MUCH A SIMPLE SMILE OR HELLOW IS LIFE GIVING TO OTHERS WHO DONT KNOW THIS SECRET.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2022
In reply to @upstairs17 "thanks to the group it realy makes Life a little better and feel that I am..." + (show)
@upstairs17

thanks to the group it realy makes Life a little better and feel that I am somebody and This not something that Im Just going through.I see now that may have been on this Road and i appreciate those shareing their Knowledge as to how they are Battling this Infirmity May the great God who WHO knows our Needs continue this Outlet and Love of this PARTICULAR Group !

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Hi @upstairs17. How are you today? What brought a smile to your face today?

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dutchman09 | @dutchman09 | Feb 22, 2022
In reply to @gingerw "@dutchman09 I am on chemo for multiple myeloma. I also have neuropathy in my lower left..." + (show)
@gingerw

@dutchman09 I am on chemo for multiple myeloma. I also have neuropathy in my lower left leg/foot caused by the myeloma, and use a cane to help mobility, now. It is one of three health issues currently being addressed, all unrelated to the other.

Yeah for being able to grin at some of the terms used in the article! Just the other day I met a fellow from my same hometown, we were 1000 miles from there [small world, right?] who shared he was a male breast cancer survivor, so I am sure he has had the same cocked head response to articles on breast cancer!

I hope you will find some relief in the prescription you were given, along with more mundane choices of cool water and layers of clothes!
Ginger

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Sorry to read about your multiple melanoma. My lower left leg and especially my left foot seems to be getting worse especially when laying down if they rub against the sheet or something! I know there is no cure for PN but after reading the reviews for Neuropure (not written by the product maker) I decided to give it a try. Should come in the mail any day. I did not know melanoma could cause Nephropathy. I should use a cane because of my balance problem from PN but I'm stubborn!

It seems funny to read the phrase 'male breast cancer' when it's anything but! My breasts have enlarged somewhat because of the hormone therapy. But I guess it's just something else to live with. Fingers crossed, so far no real hot flashes incidence. As mentioned, I've taken that prescription before to try and lower my PSA but never made the connection with hot flashes.

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