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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.

Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 24, 2019
In reply to @lbern "@gingerw I just went on 5 wishes website, the wording of the wishes are direct and..." + (show)
@lbern

@gingerw I just went on 5 wishes website, the wording of the wishes are direct and meaningful, thank you for sharing it. I am on such a surreal journey, last year at this time I couldn't even imagine that I'd have terminal cancer. I keep changing what I thought about my wishes. Initially I didn't want any pain killer that made me muddled in thinking. Now that the pain's increasing I'm beginning to feel differently. I know I want to minimize the suffering my family feels at watching my decline. I'm not sure really how to do that, I cannot reassure them of anything except my love for them....

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@ibern Your family is also going through so many levels of understanding and grief over your condition as it is today and may progress to in the future. Assuring them of your love for them is precious to all. You cannot script for them how to feel. Script only for yourself. Allow two or more important members of your family to understand that your desires may change as your condition changes. This is critical in adjusting things. It's a difficult situation to be in I know. Sending gentle cyber hugs to you today.
Ginger

REPLY
lbern | @lbern | Mar 24, 2019
In reply to @gingerw "@indianascott Like you and @burrkay I have gotten all my papers together, back in 2015 when..." + (show)
@gingerw

@IndianaScott Like you and @burrkay I have gotten all my papers together, back in 2015 when my rare kidney disease diagnosis was given. Each day is another one of gratitude. I filled out a 5 Wishes booklet to indicate my desires, and even wrote my own obituary. Funeral plans made and paid for, and that is included in packet. While it is such a sensitive subject for so many to address, my approach was to extend my kindness to others and make things as gentle as possible for them, thinking what I would like to know if in their shoes (because I have been!). And don't forget to annually or semi-annually review everything if there are changes.
Ginger

Jump to this post

@gingerw I just went on 5 wishes website, the wording of the wishes are direct and meaningful, thank you for sharing it. I am on such a surreal journey, last year at this time I couldn't even imagine that I'd have terminal cancer. I keep changing what I thought about my wishes. Initially I didn't want any pain killer that made me muddled in thinking. Now that the pain's increasing I'm beginning to feel differently. I know I want to minimize the suffering my family feels at watching my decline. I'm not sure really how to do that, I cannot reassure them of anything except my love for them....

REPLY
1 reply
fmh1 | @fmh1 | Mar 24, 2019

Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer in the lymph nodes with a small spot on one rib. I just started chemo this past Friday, and it went well, no side effects; however, the Neulasta OnPro device failed /beeped red, so I took it off and called my doctor. He said to stop by the hospital cliinic on Monday morning. Is there someone in Connect who knows what the basic back-up plan is when the device fails? I cannot find any answers online, and all the cancer clinics are closed on the weekend. My doctor said if it is not given within 27 hours of chemo, there is no reason to get the shot. Your thoughts appreciated.

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 18, 2019
In reply to @lbern "@indianascott more info about ca 19 at https://www.pancan.org/facing-pancreatic-cancer/diagnosis/ca19-9/#what" + (show)

Thank you, @lbern I appreciate this information. My neighbor during the summers was just diagnoses with Stage IV Pancreatic Cancer and your link will help me understand at least a bit of the jargon surrounding it.

Thanks again and get ready to welcome Spring this week!

REPLY
lbern | @lbern | Mar 17, 2019
In reply to @IndianaScott "So sorry to read this, @lbern I am not familiar with what you are referring to..." + (show)
@IndianaScott

So sorry to read this, @lbern I am not familiar with what you are referring to with the CA 19 test.
If you don't mind I'd be interested in learning what it is.

Also, I support your 'the good and the bad' perspective here! It was exactly the fact I could 'be myself' here that made me come to and stick around Connect. Healthcare journeys are not always positive. I for one belive sometimes just saying (or typing) something outloud makes it far easier a burden to carry!

Good luck with the MRI results. Will be thinking about you!

Strength, courage, and peace

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@IndianaScott more info about ca 19 at https://www.pancan.org/facing-pancreatic-cancer/diagnosis/ca19-9/#what

REPLY
1 reply
lbern | @lbern | Mar 17, 2019
In reply to @IndianaScott "So sorry to read this, @lbern I am not familiar with what you are referring to..." + (show)
@IndianaScott

So sorry to read this, @lbern I am not familiar with what you are referring to with the CA 19 test.
If you don't mind I'd be interested in learning what it is.

Also, I support your 'the good and the bad' perspective here! It was exactly the fact I could 'be myself' here that made me come to and stick around Connect. Healthcare journeys are not always positive. I for one belive sometimes just saying (or typing) something outloud makes it far easier a burden to carry!

Good luck with the MRI results. Will be thinking about you!

Strength, courage, and peace

Jump to this post

@IndianaScott thank you for your support. I think I sent a relpy about the ca 19 test, if I don't see it appear I'll try again. Still Learning 🙂

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All_in_1963 | @burrkay | Mar 16, 2019
In reply to @gingerw "@indianascott Like you and @burrkay I have gotten all my papers together, back in 2015 when..." + (show)
@gingerw

@IndianaScott Like you and @burrkay I have gotten all my papers together, back in 2015 when my rare kidney disease diagnosis was given. Each day is another one of gratitude. I filled out a 5 Wishes booklet to indicate my desires, and even wrote my own obituary. Funeral plans made and paid for, and that is included in packet. While it is such a sensitive subject for so many to address, my approach was to extend my kindness to others and make things as gentle as possible for them, thinking what I would like to know if in their shoes (because I have been!). And don't forget to annually or semi-annually review everything if there are changes.
Ginger

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@gingerw Perfect! I love the "five wishes booklet", indicated ones desires...I have yet to write my obituary but will do it as soon as things slow down a bit...just back from a nice vacation with my dear wife. Thanks for sharing!

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Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 15, 2019
In reply to @lbern "Just wanted to share...I'm thinking this is the place to share both good and bad...this is..." + (show)
@lbern

Just wanted to share...I'm thinking this is the place to share both good and bad...this is the reality of the journey I'm in. I was diagnosed early Nov 2018 and had ca 19 result of 419,300. (The highest one of my health professionals ever saw). started chemo and Feb 5 went down to 59,259. Since them my liver function blood tests have been steadily trending poorly . They took another ca 19 test last week. It's went up to 101,750. Had an MRI today, waiting for results. Doc is thinking we'll change chemo. I'm a skeleton compared to my pre-cancer self. I still feel like this is not real....

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@lbern We each have a journey, filled with positive and negative. It equals 100% but is rarely overwhelming one or the other. Here we have the chance to vent, lean on a shoulder, ask for ideas, etc. I am sorry to hear about the recent tests. Trust your Dr's suggestions if you trust him. Is there a "wellness community" near you, or an in-person support group? It helps you along this path. We're here for you, at Mayo Connect.
Ginger

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 15, 2019
In reply to @lbern "Just wanted to share...I'm thinking this is the place to share both good and bad...this is..." + (show)
@lbern

Just wanted to share...I'm thinking this is the place to share both good and bad...this is the reality of the journey I'm in. I was diagnosed early Nov 2018 and had ca 19 result of 419,300. (The highest one of my health professionals ever saw). started chemo and Feb 5 went down to 59,259. Since them my liver function blood tests have been steadily trending poorly . They took another ca 19 test last week. It's went up to 101,750. Had an MRI today, waiting for results. Doc is thinking we'll change chemo. I'm a skeleton compared to my pre-cancer self. I still feel like this is not real....

Jump to this post

So sorry to read this, @lbern I am not familiar with what you are referring to with the CA 19 test.
If you don't mind I'd be interested in learning what it is.

Also, I support your 'the good and the bad' perspective here! It was exactly the fact I could 'be myself' here that made me come to and stick around Connect. Healthcare journeys are not always positive. I for one belive sometimes just saying (or typing) something outloud makes it far easier a burden to carry!

Good luck with the MRI results. Will be thinking about you!

Strength, courage, and peace

REPLY
2 replies
lbern | @lbern | Mar 15, 2019

Just wanted to share...I'm thinking this is the place to share both good and bad...this is the reality of the journey I'm in. I was diagnosed early Nov 2018 and had ca 19 result of 419,300. (The highest one of my health professionals ever saw). started chemo and Feb 5 went down to 59,259. Since them my liver function blood tests have been steadily trending poorly . They took another ca 19 test last week. It's went up to 101,750. Had an MRI today, waiting for results. Doc is thinking we'll change chemo. I'm a skeleton compared to my pre-cancer self. I still feel like this is not real....

REPLY
2 replies
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