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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.

Maureen, Alumna Mentor | @alpaca | Dec 2, 2017
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

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You have such insight! I can just imagine the oncologist being overawed by your fabulousness. I hope the new chemo gives you normal breathing so you can wow everyone even more.

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Linda | @llwortman | Dec 2, 2017
In reply to @hopeful33250 "Hello @saltis I am sorry to hear that you have been hospitalized and not well but..." + (show)
@hopeful33250

Hello @saltis

I am sorry to hear that you have been hospitalized and not well but glad that you are back home. You made some very helpful comments about the newly diagnosed people in our group. It does take awhile to get our hands around a cancer diagnosis and the long term implications of it, doesn't it?

Please keep us updated as to how you are feeling. We have many in our group you are dealing with breathing problems right now. I'm going to tag some of our members who have also dealt with breathing problems, I'm sure they would like to give you some words of encouragement, @windwalker, @shortshot80 and @llwortman.

Yes, I will remember to "enjoy the life I have." Thanks for that great reminder!

Teresa

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Hello Dear:
I certainly am happy that you have returned home. I under stand somewhat how challenging it is when our lung(s) have difficulty finding that breath of comfort.
I hate it when I can’t breathe! You are very strong and your “will to live” is remarkable and sets the standard high for all of us.
I too am happy that you find value and trust in Connect! Let’s stay connected.
linda

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 2, 2017
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

@saltis I so appreciate your posts! Your attitude is exceptionally healthy - thanks for sharing it with the rest of us. Teresa

REPLY
shortshot80 | @shortshot80 | Dec 2, 2017
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

(shortshot80) Nancy @saltis....You are having quite a journey, you could write a chapter for your new book on how a oncologist treats people. Who eventually might get his vocal wording more positive than negative conversations. To me things/words are demeaning and uncalled for. You already know what is happening in your life and you do not need anything more to make you feel useless. I pray that things will/can be better for you. I have two kinds of lung cancer. I have been only two years with this and my friends/family keep me on level ground. I am 84 and also know I will not live forever, however I do not need any negative words or people around me. I have my church which I attend every week and some times various functions. I feel very comfortable in either situation.I am very lucky. I pray that things will be better for you and people with encouraging words and actions for you. Blessings....... Nancy

REPLY
saltis | @saltis | Dec 2, 2017

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

REPLY
19 replies
krishh | @krishh | Dec 2, 2017
In reply to @kateia "I have a friend who has just made the decision to forego any more treatments. The..." + (show)
@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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Hi Linda - I love your response. I feel very much the same about facing death. Some people have a very hard time understanding how I can be so accepting. The way I look at it, we don't have a lot of options. We can either be freaked out and unhappy, or we can choose Happiness - I've already looked up Dr. Sood's book and will be on a search for it at the library of my local Mayo Clinic. Thank you for the suggestion!

REPLY
krishh | @krishh | Dec 2, 2017
In reply to @kateia "I have a friend who has just made the decision to forego any more treatments. The..." + (show)
@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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I agree with the Sarah Young books. Often I hear the words I need to hear that day - highly recommend! And I agree with Mollie - your friend is lucky to have you!

REPLY
krishh | @krishh | Dec 2, 2017
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

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@allisonsnow I know what you mean about being a guinea pig as well, BUT, I am currently receiving chemo that is NOT meant for my type of cancer (cholangiocarcinoma or bile duct cancer) and I am doing better than I have for the past year. Hard to believe, actually, how good I really feel. That being said, you just never know. My quality of life is pretty good. I also understand what you mean by everyone saying how good I look. I like how Teresa said people have no idea how hard we work at trying to look good before going out (at least most the time). You just have to do what feels right for YOU! Good luck and keep us posted what you decide. ~Kris

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Linda | @llwortman | Dec 2, 2017
In reply to @kateia "I have a friend who has just made the decision to forego any more treatments. The..." + (show)
@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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Dear Kateia::
You are a wonderful friend. It is so special when we have people in our lives like you.
Just knowing “you care” is a great gift to all of us!

Looking at the end of life has made me appreciate each day,one day at a time. My lung cancer diagnosis really became my blessing. However,I did not realize this on my own.

For me, I will always feel blessed to have been asked to be part of a “Paced Breathing” research study by Mayo Clinic -with Dr Amit Sood. There are now several books available written by Dr Sood. I have given out several 100 copies of “Happiness” as gifts. People really have loved the read.

At the brink of my life, I was afraid of dying. Hearing the words you have lung cancer was very scary and shocking! I was in denial.

The surgery to remove most of my left lung was extremely painful. My husband stood by my bed and told me to Breathe, Breathe, breathe!

I had never connected my mind and body and spirit to my death. I was afraid of dying more than the experiencing the joy of living. The lessons I learned in the study were life changing and I found true happiness. This makes people around me happy and less afraid of my dying.

Through the study, I took time to slowly breathe “in and out” and I learned to slow down and relax my “nervous system”, “mind and body”. The 15 minute dvd(now on my iPhone) has a calming voice that “talked to me” while breathing to relaxing symphonic tones! I practice this breathing several times a day!

With paced breathing, I am able to reconnect my mind, body and spirit. For me a life saving lesson.

I realized after learning to “breath new life again”, I became stronger mentally and I have happily accepted the fact, “No one gets out of here alive!”
I do not grieve my dying. I have let go of a lot.I am able to walk away from things that do not matter and feel good about rising above the the things I really cannot change. I’m living.

I will never forget the strength and love as of those who have stuck by my side through a very scary time.

I still thank my friends who so bravely “showed up” to support me, when some humans though they knew when would die!

Call it crazy, but it is comforting when my best friends and I giggle about dying. We are not being mean or insensitive...We all know we will meet again.

Give your friend a big hug for me & ask her to give you a hug back! You both are special. Thank you for sharing. Let’s stay Connected!
linda

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 2, 2017
In reply to @kateia "I have a friend who has just made the decision to forego any more treatments. The..." + (show)
@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.

Jump to this post

@mollie59 Thanks for your suggestion! Teresa

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