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Moderator

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.

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ventibug | @ventibug | May 28, 2018
In reply to @kateia "I have a friend who has just made the decision to forego any more treatments. The..." + (show)
Profile picture for kateia @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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ventibug | @ventibug | May 28, 2018
In reply to @testlady "Six years and counting! I walk around with a smile and a positive attitude only to..." + (show)
Profile picture for testlady @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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Mentor
Scott, Volunteer Mentor | @IndianaScott | May 28, 2018
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
Profile picture for Colleen Young, Connect Director @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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1 reply
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ventibug | @ventibug | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
Profile picture for ventibug @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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@jamienolson oh I have plenty of anxiety to share but, yes, I need help navigating. I dont know how to start a thread. Where is the "start a thread" button? We all know life is not fair, but my Iphone croaked the week I started chemo. I was so mad that Apple wouldnt do anything to help me with a 23 m/o Iphone on recall that i refused to buy another one! Now Im trying to learn a new Samsung phone! Joke is on me!

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Profile picture for Scott, Volunteer Mentor
Mentor
Scott, Volunteer Mentor | @IndianaScott | May 28, 2018
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
Profile picture for Colleen Young, Connect Director @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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@ventibug Personally I think that is the best thing we can do!

Cheers to you and your spouse!

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Profile picture for Scott, Volunteer Mentor
Mentor
Scott, Volunteer Mentor | @IndianaScott | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
Profile picture for ventibug @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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Thanks @ventibug I appreciate your kind words. My journey though grief is almost as hard, and in some aspects harder, than my years as caregiver. The most valuable lesson I have learned is the oft quoted 'stages of grief' are not at all what the majority of individual experience as they live in grief. But that is for another discussion another time.

I know my wife felt as you did...not liking to be the one on the receiving end all the time. She did finally come to accept it as an inevitability, but it took a few years.

Strength, courage, and peace!

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ventibug | @ventibug | May 28, 2018
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
Profile picture for Colleen Young, Connect Director @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 would have liked your wife! Ventibug

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Profile picture for ventibug
ventibug | @ventibug | May 28, 2018
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
Profile picture for Colleen Young, Connect Director @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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Tried to teach our kids Empathy, Altruism, and Work Ethic. Thanks for sharing.

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Profile picture for ventibug
ventibug | @ventibug | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
Profile picture for ventibug @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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Great ideas, thank you. I cannot imagine coping with the death of your wife; my sympathy for your loss. My husband has been so great about taking care of me. I literally could not be doing this without him! He just changed another dressing. And of course i would do the same for him. Still hard to be on receiving end all the time. Hope you take care of yourself, too, but of course you do. You are still here and still reaching out. Ventibug

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ventibug | @ventibug | May 28, 2018
In reply to @cindylb "I was directed over to this support group by the lung cancer group and am glad..." + (show)
Profile picture for cindylb @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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@llwortman. Wow, thanks. Will check out TED talk tomorrow and likely order a book. Ventibug

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