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.

@colleenyoung

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It’s not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

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I bet you would have @ventibug She was a pistol for sure! 100% full Italian, driven, loving, and an amazing partner who always had my back. She and I were about polar opposites. She was creative, an artist, and an entrepreneur who created a chain of five children's clothing stores and then reinvented herself as an accomplished interior designer. I don't have a creative bone in my body, can't draw in a coloring book, and always worked for large firms.

At the end of her life, when she was designing her Celebration of Life, she asked me to get a second sheet of paper. I did and asked why. She said it would be for the list of those folks she wanted me to invite to her Celebration. I said 'honey, these things are not usually done 'by invitation only' you know!' She responded with (pardon the language) 'Scott, I don't want someone in our living room blowing smoke up your a*s telling you how much they cared about me after I'm dead, when they didn't give a sh*t about me when I was alive'.

56 names. 54 attended (the only two who missed were overseas). She even picked the wine to be served. We drained 62 bottles that night!

Yes, I think you might have enjoyed her!

Strength, courage, and peace!

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@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

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@nogginquest. Thanks for your honesty. I am already tired of being told not to be negative. I am human. Some of my emotions in response to loss & grief are negative. I dont want to stop being fully human. Silly people. I have never liked simplistic responses to complex human experiences.

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@kateia

I have a friend who has just made the decision to forego any more treatments. The cancer has spread throughout the body. I have always supported her throughout the two year struggle and continue to do so. My dear friend is a Christian and has the comfort of knowing that in the end he/she will be with Christ. My question for you, cancer sufferers, what can I do to keep spirits up and let my friend know that I care and want to help.

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@kateia. Thank you for persisting in relationship with your friend. Many herein have mentioned their loss when friends/relatives dissapear from their lives when they have cancer. Please do not underestimate the value to her of "being with", just adapting the pace and pattern of the last 2 years of your friendship, and staying in relationship. When I have done that, I have always been so blessed; I am certain I received more than I gave to my dieing friends. Now, to learn the corresponding role as i am the patient. Ah, gee, another Dang learning experience!

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@shortshot80

(shortshot80, Today in my world the sun is shining brightly, no wind. Can hear the ocean as I sit here at my computer. I am patiently waiting for my cancer doctor to call and tell me the test she wanted has be done and I can start chemo. Also this afternoon my husband, #1 son and I are going to the casino to play bingo. We like to do this couple times a month. Some times we even win!!!!. My friend also let me know he will be here next month and help me finish my book. That will be just great. Soon I will let you know about my book. Have been thinking about this project for about 30 * 40 years. Now I need to finish it as time is getting shorter. Nancy

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@shortshot80 Hi Nancy. Can you at least tell us what kind of book you are writing?

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@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

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@ventibug

You are sooo right! Simplistic responses to complex problems are not at all helpful. They reflect a lack of understanding. I have learned to soften my irritation to simplistic responses by realizing that they simply don't understand my situation and chalk off their response to ignorance and lack of experience in the tough stuff of life.

Groups like Connect give us a place to share with others who understand. That is probably why we are all here.

Teresa

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@colleenyoung

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It’s not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

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@IndianaScott Hi Scott. Your wife sounds like someone I would have loved to have had as a friend. We have interior design in common (and wine). Life can be so unfair when disease comes along and snatches away your dreams. Big Hug to you, Scott.

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@colleenyoung

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It’s not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

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Thanks @windwalker Hugs back!

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@allisonsnow

I have a question. I had an oncologist ( that I loved ) who ordered a pet scan with every visit, every 3 months ….and now have a well supported oncologist who NEVER orders one ! Who was/is right???

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Hi @allisonsnow
You wrote about one oncologist ordering a PET scan every 3 months and now you have an oncologist who doesn't monitor with PET scans. And you asked, "Who's right?"

Naturally, it is a great and valid question to ask your current oncologist why s/he doesn't order quarterly PET scans. I encourage you to ask.

Not knowing all the details of your case and I'm not a medical professional, I can only tell you that there are many factors that go into deciding when to do imaging studies and when not to. Sometimes, more is not necessarily better. Scans can be trying and may even cause side effects themselves. When cancer is very slow progressing or in remission, it may not be necessary to be monitored as frequently.

Perhaps you are having other tests to replace the PET scans. What tests do you now have with your 3-month visits?

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@allisonsnow

I have a question. I had an oncologist ( that I loved ) who ordered a pet scan with every visit, every 3 months ….and now have a well supported oncologist who NEVER orders one ! Who was/is right???

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I have complete blood work and a CT. That is until this last visit when I was only seeing my pulminalogist and I ASKED what the blood work was checking for. They didn't schedule a blood work-up. I know my cancer does not have markers and the blood work was necessary while on chemo but I will have to check with oncologist on who is ordering and why? I just like to know what they are looking at, I know there is a lot that needs to be monitored at this time but it is never discussed during my meeting with Dr. unless I bring it up.
One of the great things about most Mayo Dr.s' is that they will take as much time as you need for questions. I had growth during chemo so we stopped that in Jan. and had more growth in April, not much but enough to be considered growth … more than the 10% rule my Dr. goes by…he says anything less than 10% is considered stable. That's what he thinks LOL to me growth is growth!! and all those littles add up to a lot ! If I may add a comment for @ventibug anxiety can suck the joy out of living if you let it. It sounds like you have a strong faith so all I can offer you is trust and be thankful. Trust that God will give voice to the questions you have and be thankful everyday. People would look at me as though I was crazy when I said Cancer was something I could be thankful for in that it has made me a better person. More understanding, more giving more generous of my time and so much more. Thankful for the 100% joy I take in 5 grandsons 2 of whom were born after the cancer. I just turned 60 which in itself is a gift, I was given weeks to months to live when diagnosed that was 9 years ago.
Of course I still have the pre-visit anxiety but not as drawn out as it used to be. I don't believe that will ever go away. Holidays bring so much Joy and sadness accept that as your new normal, don't try so hard to not be anxious or sad or angry It is all part of the journey.
He knows the plans he has for me. If any of this helps I am glad.
allison

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@allisonsnow

I have a question. I had an oncologist ( that I loved ) who ordered a pet scan with every visit, every 3 months ….and now have a well supported oncologist who NEVER orders one ! Who was/is right???

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Yes, it helps. Thank you, Allison.

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@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

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You are a step ahead of me I have gone between a Samsung and a LG I used to think I knew a bit about navigating computers… that was until it came to phones !!! LOL I was ok at first but my latest phone a simple smartphone seems to be in a foreign language. My husband used to say he had a stupid phone hahaha but not anymore he is leaps and bounds ahead of me and that is just not right LOL
but all kidding aside our phone and the computer can become a life line some times those close to us just don't get it and we need someone who has been there…done that and that is what we get here on connect. It comes from a lot of different directions, you just need to find the one you connect with and go from there.

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Hello @ventibug
Hope your Samsung & you have a long lastning & satisfying relationship, ahead of you. I am an IPhone & IPad user & it is too late to start learning how to use an android gadget. I have a computer but don’t remember where I have parked it. My memory is a bit of mess and I have accepted my condition with difficulty, due to 23 years of chemo, cancer & other treatments. I am always such a positive and happy person but now I feel that I am lost in the deepest whole of depression that can be found on earth. I feel that my husband is very tired of being this great strenght, loving partner of mine. It is not easy with ups and downs in my different treatments, side effects and various reasons to be hospitalised, more often recently. Between us I am tired of being alive but sitting in this waiting rom before the final D”eath”day. I have being diagnosed 4 time with stage 4 cancer. I don’t know if it was thanks to my Sunny personality or my wonderful oncologists that I have survived this far. But as said before, it has become tiring just waiting. On the bright side, I Said hello to my new grandchild, a little boy for almost two weeks ago. Didn’t even believe to be able to meet my first grandchild, a very bright and beautiful girl who would be 4 years old quite soon. So you see life is full of surprisens even when we found ourselves at the bortom of darkest whole in the world. My aim is to find a comfortable and pleasant mind zone for my beloved husband, where he can relax and gather his strenght back.
I am so happy that you are a believer, your trust in God Will help you through this ordeal. Nobody understands your situation better than you, but please find a place in your mind that you can the reasons for being lucky. Mine are that I have a wonderful tired husband, a handsome son, two wonderful grandchildren, and still with my spread stage 4 cancer for the past 3,5 years, I have been enjoying most of my days. If I die now, you must know that while feeling the blue, I am the luckiest woman alive.
Take care beloved ventibug❣️

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@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

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@ventibug, I'm glad you found the Start a Discussion button, which is found on the Group page, for example the Cancer group https://connect.mayoclinic.org/group/cancer/.

If you have further questions, here are some helpful tips on how to use Connect https://connect.mayoclinic.org/get-started-on-connect/

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I connect to almost everything you have said @saltis.. At one time or another have experienced it all especially the feeling of being tired of the fight but battling with that feeling is the stronger emotion of feeling blessed with the cancer, as I have expressed many times I am a better person now. So @ventibug I hope the replies and welcomes you have had and will continue to get supports the feelings of gratefulness for what you can still experience. If anything is "normal" during this time it is that you can feel Gods love at the same time you feel depressed for what you have lost. You can feel joy for the gifts you are still getting at the same time you feel sadness for what you have lost. Here you find compassion and understanding for whatever "stage" you are in. @saltis said it very well.

Allison

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@saltis

Hello @ventibug
Hope your Samsung & you have a long lastning & satisfying relationship, ahead of you. I am an IPhone & IPad user & it is too late to start learning how to use an android gadget. I have a computer but don’t remember where I have parked it. My memory is a bit of mess and I have accepted my condition with difficulty, due to 23 years of chemo, cancer & other treatments. I am always such a positive and happy person but now I feel that I am lost in the deepest whole of depression that can be found on earth. I feel that my husband is very tired of being this great strenght, loving partner of mine. It is not easy with ups and downs in my different treatments, side effects and various reasons to be hospitalised, more often recently. Between us I am tired of being alive but sitting in this waiting rom before the final D”eath”day. I have being diagnosed 4 time with stage 4 cancer. I don’t know if it was thanks to my Sunny personality or my wonderful oncologists that I have survived this far. But as said before, it has become tiring just waiting. On the bright side, I Said hello to my new grandchild, a little boy for almost two weeks ago. Didn’t even believe to be able to meet my first grandchild, a very bright and beautiful girl who would be 4 years old quite soon. So you see life is full of surprisens even when we found ourselves at the bortom of darkest whole in the world. My aim is to find a comfortable and pleasant mind zone for my beloved husband, where he can relax and gather his strenght back.
I am so happy that you are a believer, your trust in God Will help you through this ordeal. Nobody understands your situation better than you, but please find a place in your mind that you can the reasons for being lucky. Mine are that I have a wonderful tired husband, a handsome son, two wonderful grandchildren, and still with my spread stage 4 cancer for the past 3,5 years, I have been enjoying most of my days. If I die now, you must know that while feeling the blue, I am the luckiest woman alive.
Take care beloved ventibug❣️

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Dear Saltis, Your descriptions of your experiences and emotions are wonderful. Twenty three years is a long time. You give me hope that I may outlive my 18 month prognosis. I've wanted a 50th wedding anniversary for 43 years this week. We will see what God has in mind. Bless you in welcoming that new grandson. Pictures were taken, right?
I, too, am blessed to have a husband who takes excellent care of me. This is a new role for him in this last 6 month and he has really stepped up. I am so grateful. I can't imagine how tired he my become and it is hard to be on the receiving end of nurture all the time. Yet I am so grateful.
You mention feeling foggy. I can tell a difference already so I think you do very well. Thank you for posting. I feel understood when i can empathize with you. Ventibug

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