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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.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 14, 2019
In reply to @lbern "@IndianaScott thanks for helping me learn all kinds of things, including how the discussion board works...." + (show)
@lbern

@IndianaScott thanks for helping me learn all kinds of things, including how the discussion board works. Where would I see the electronic note you mentioned? thanks again

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Good morning, @lbern Sorry I missed that step! If you go to your account (top of your page where the circle (or picture) is hit the down arrow and a menu opens. Select Account Settings. Scroll down to Email Notifications and pick what you'd like to get notified of from each category.

I hope this is clear....if not let me know and I can try again!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 14, 2019

@lbern you'll find some helpful tips about using Connect, with instructions and pictures here: https://connect.mayoclinic.org/get-started-on-connect/
If you have any questions about navigating the site or figuring out how it works, send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 15, 2019
In reply to @IndianaScott "Good point @burrkay My father created what he called his 'Just In Case' book. It was..." + (show)
@IndianaScott

Good point @burrkay My father created what he called his 'Just In Case' book. It was a three-ring binder with all this type of information in it. I copied that idea and added a few modern touches, which my dad never had to worry about, such as passwords that might be needed, what accounts are autopay, where all my electronic photos are backed up, etc.

I, too, gave a copy to each of our adult children along with a copy of my POAs, et. and have a copy in our home (where they know where it is) so they can have unfettered access to it since it also includes my last wishes. Plus this way I have one copy easily accessible,which I can update as passwords change, accounts close, companies change names, etc.

I agree --- great to be able to share here on Connect!

Strength, courage, and peace!

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@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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3 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 15, 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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Good to hear @gingerw I will never forget our daughter whispering to me in the funeral home 'I am so glad we know exactly what Mom wanted. Can you imagine having to question ourselves with every decision?'

Enjoy your Friday!

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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....

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2 replies
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

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2 replies
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....

Jump to this post

@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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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!

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 🙂

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

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