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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.

ginpene | @ginpene05 | Apr 15, 2018
In reply to @margaretrivers "I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate..." + (show)
@margaretrivers

I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate for surgury. Dr been giving me chemo and until now the tumor was stable. Now the last abd cat scan shows there's a 'mild progression of the tumor at the head of the pancreasl Drs want me to have radiation ; and and I'm scheduled for a PET SCAN in the morning. How effective is radiation..and I was told I MUST keep my blood sugar UNDER 150 IN ORDER TO HAVE THE pet scan. My blood sugars have always been erratiC; wILL they NOT DO THE TEST IF MY BS ISN'T BELOW 150 which means I can't do the radiation?

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Hi, sorry about your recent changes in your tumor. I have had 2 PET scans, and they said nothing by mouth from midnight the night before, and my blood sugars were below 100 by the morning of the scan. If your levels are erratic, they should schedule you first thing in the morning. Ask your doc, but I would think your levels would be alright. And the PET is so important for diagnosis. Good luck and keep fighting. gp

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Maureen, Alumna Mentor | @alpaca | Apr 15, 2018

I don't know the answer, just know that PET scans show uptake of glucose where tumours are active. You wouldn't want anything to give you a false result. Were you told how to manage your diet to achieve this? Good luck with the scan and the radiation. Once again, I don't know about radiation for pancreatic cancer but see radiation as an important tool for managing cancer. Best wishes.

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margaretrivers | @margaretrivers | Apr 15, 2018

I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate for surgury. Dr been giving me chemo and until now the tumor was stable. Now the last abd cat scan shows there's a 'mild progression of the tumor at the head of the pancreasl Drs want me to have radiation ; and and I'm scheduled for a PET SCAN in the morning. How effective is radiation..and I was told I MUST keep my blood sugar UNDER 150 IN ORDER TO HAVE THE pet scan. My blood sugars have always been erratiC; wILL they NOT DO THE TEST IF MY BS ISN'T BELOW 150 which means I can't do the radiation?

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1 reply
vsinn2000 | @vsinn2000 | Apr 13, 2018
In reply to @nogginquest "Tomorrow I go in for radiosurgery on my pancreas. When I was first diagnosed with stage..." + (show)
@nogginquest

Tomorrow I go in for radiosurgery on my pancreas.
When I was first diagnosed with stage IV pancreatic cancer, I was told that I was not a candidate for surgery or radiation. However, the cancer responded to Folfirinox/Folfiri treatments. The nearly two dozen tumors in my liver are resolved, and the 2inch tumor in my pancreas is a fuzzy haze on the scans. I'm slowly buying back time.

We are going in to zap the original source of the cancer and hopefully kill of a few more cancer cells.

My oncology teams said we are in uncharted territory, and there is a 2% chance the procedure could be fatal. There is also a chance that we could damage my small intestine. However, the benefits far outweigh the risks. We are trying to stay on top of the cancer.

I am 45, and I am fighting for my life. I'm both nervous and excited about this procedure. I'm also nervous about skipping chemo for a month. What if the cancer starts to grow somewhere else while we zap the pancreas?

Here's going into the big unknown.

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Your whole battle is like flying off into new, uncharted territory! Keep fighting, every single day. Mayo works miracles and if there is even a small chance to beat this I guarantee you they will have your back and do everything humanly, technologically and spiritually possible to help you! Stay positive and my thoughts are with you!

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nogginquest | @nogginquest | Apr 9, 2018
In reply to @nogginquest "Tomorrow I go in for radiosurgery on my pancreas. When I was first diagnosed with stage..." + (show)
@nogginquest

Tomorrow I go in for radiosurgery on my pancreas.
When I was first diagnosed with stage IV pancreatic cancer, I was told that I was not a candidate for surgery or radiation. However, the cancer responded to Folfirinox/Folfiri treatments. The nearly two dozen tumors in my liver are resolved, and the 2inch tumor in my pancreas is a fuzzy haze on the scans. I'm slowly buying back time.

We are going in to zap the original source of the cancer and hopefully kill of a few more cancer cells.

My oncology teams said we are in uncharted territory, and there is a 2% chance the procedure could be fatal. There is also a chance that we could damage my small intestine. However, the benefits far outweigh the risks. We are trying to stay on top of the cancer.

I am 45, and I am fighting for my life. I'm both nervous and excited about this procedure. I'm also nervous about skipping chemo for a month. What if the cancer starts to grow somewhere else while we zap the pancreas?

Here's going into the big unknown.

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@windwalker I visited the Mayo once for a second opinion. They recommended the radiosurgery.
I was very impressed.

Finished first round of radiation, and I am almost as sick as I was when I first started chemo.

The toilet and I are becoming reacquainted.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 9, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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Hello @saltis

Your strategy in the last paragraph is just perfect! Thanks for the smile and for a good response for people who just don't know better.

Teresa

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saltis | @saltis | Apr 9, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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Oh, I don't feel very special or chosen. I am just a human being, no better no worse that is really going to die of cancer, if not get hit by a bus as everybody else, all those who are not going to die of cancer. Here in Sweden 98% say that if they aren't driven over by a car. Well, actually there aren't many who were driven over by stray cars or cats, lol!
Allison, I feel and know what you are talking about. They want to give us courage but they belittle us and doesn't understand how much it hurts. The worse are those who change the subject immediately as if the cancer through talking becomes contagious.
Hope you were able to sleep a bit more. My lovely girlfriend from my youth surprised us with her visit all the way from Toronto. Her presence has been a great comfort to my husband & me. Just love to be able to laugh, joke about anything and everything and be sure that she doesn't take it in the wrong way.
Dear Allison, in case of non- understanding people, turn a deaf ear to them & ask them many times to repeat what did they just said until the umpth time and then ask them innocently so your plan is to be hit by a bus? But I never wanted neither planned to die of cancer. How am I able to change to your category?
Take care & have fun,
Saltis

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 9, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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@allisonsnow

So very true, Allison. Thanks for saying the words that we all wish we could say to others.

Teresa

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allisonsnow | @allisonsnow | Apr 9, 2018
In reply to @alpaca "This breaks my heart because I know what you are feeling and I'm so far away..." + (show)
@alpaca

This breaks my heart because I know what you are feeling and I'm so far away in New Zealand but I reach out to you across the waters. I've been lucky with my repeated cancers and have come back from the brink a few times - feel such compassion to those who have to really face up to their mortality more immediately. We all seem to live in denial of death - even older folk like me - until we are forced to confront it. That's when it hurts. But you are not alone. I get it. Much love to you.

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@alpaca... Thank You.... means a lot

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Maureen, Alumna Mentor | @alpaca | Apr 9, 2018

This breaks my heart because I know what you are feeling and I'm so far away in New Zealand but I reach out to you across the waters. I've been lucky with my repeated cancers and have come back from the brink a few times - feel such compassion to those who have to really face up to their mortality more immediately. We all seem to live in denial of death - even older folk like me - until we are forced to confront it. That's when it hurts. But you are not alone. I get it. Much love to you.

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