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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.

nogginquest | @nogginquest | Apr 4, 2018

I'm a programming and outreach librarian, which means I plan and schedule all the programs for our library. When I was first diagnosed with Stage IV pancreatic cancer I was told I would probably never go back to work and if I did it would be part-time at most. However, with my partial remission I was able to go back to work, and most weeks I clock-in 40 hours.

The last two weeks I have scheduled several really fun programs. I planned them with the idea that I will get to host many of the programs. There was a part of me that was super excited, but another part of me was super sad.

There is a real possibility that the remission could be short lived. The type of cancer, and lovely BRCA mutation, I have could mean a quick progression.

I'm just a little sad at the thought of not hosting some awesome programs. I'm really disappointed that cancer makes me feel the emptiness of missing future fun.

Cancer really sucks.

REPLY
6 replies
nogginquest | @nogginquest | Apr 3, 2018
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
@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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At an appointment with an oncology psychologist I was told that it was interesting to feel survivor's guilt when I wasn't even a survivor. I told my oncology nurses and they replied with a huge hug. They said I am living which means I am surviving.
I never went back to that psychologist.

REPLY
shortshot80 | @shortshot80 | Mar 27, 2018
In reply to @shortshot80 "Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I..." + (show)
@shortshot80

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

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Hi Teresa, (shortshot80) Nancy. Things are somewhat down to a small roar... Next is... I saw my heart doc yesterday, Seems that my pacemaker has stopped working. I have to have the battery changed next Monday April 2. My doc is 65-70 miles away. I have to be at
the hospital at 6;30 am for surgery at 8am. Will have to be in the hospital for aprox 5 - 6 hours afterward. He has to change the battery and make a few adjustments. Then the drive home of one - one half hours. . See my cancer doc on this coming Thursday to see what will happen next. I'm feeling somewhat better than I was a month ago. Still a touchy stomach. Hopefully that will be gone soon. I have lost over 20 pounds with all that has happened. I had panic attacks in bed, (thinking I could not breath) (cancer) So am on some lorazepam. Really does help and am finially getting some sleep. Positive outlook helps.. Will keep you posted as I can. Nancy

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 22, 2018
In reply to @shortshot80 "Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I..." + (show)
@shortshot80

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

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@shortshot80 Hi Nancy:

I am so glad that you are doing better, I really missed hearing from you. Anxiety is pretty easy to treat and often meds and physical problems can cause anxiety. What a blessing that your primary doctor figured it out. I am so glad that you had a good birthday.

I look forward to hearing from you again.

Teresa

REPLY
shortshot80 | @shortshot80 | Mar 21, 2018
In reply to @shortshot80 "Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I..." + (show)
@shortshot80

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

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Hi Teresa, Finally I think I am getting a little better. The last month and half have been very stressfull. First I could no eat very much, then no sleep, then I couldn't breathe... Seemed like I wasn't going to get better at all. I have been to the doc's and Yesterday I sawmy primary
doc. I just told him how I felt, So turned all my problems to him. Well he said something that finally made sence. . I was having "panic attacks, quite regularly. Didn not even think that as I have never been afraid of much of anything. Well doc gave me pill (prescription for some "lorazepam" I think that is a life savor...... I was able to sleep through the night last night and I have even eating a little more. I had spent four days in the hospital, (didn't figurer it out the). Think things will be better not.. Slow but that's ok.
My 85 th birthday was just great. I had many email, cards , phone calls. I even had a family from Texas call and sing to me. That was special. ..... Thanks for asking .... Be back soon. Nancy shortshot80

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 21, 2018
In reply to @shortshot80 "Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I..." + (show)
@shortshot80

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

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@shortshot80 Hello Nancy,

I hope that this post finds you better from the side effects you mentioned in your last post. I hope that your birthday on Monday was a good one for you.

I would love to hear from you when you feel up to it.

Teresa

REPLY
saltis | @saltis | Mar 5, 2018
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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Thanks Teresa for your kind letter. Take care❤️

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 5, 2018
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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Hello @saltis

Your post brightened my day! I appreciate the positive attitude you have managed to maintain. I am glad to hear that you got through a rather tough bout of the flu.

Teresa

REPLY
saltis | @saltis | Mar 5, 2018
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

You are so right. I really enjoy life & love hanging out with the loved ones and new friends. I see my grand daughter grow and one is on his way to this world of us, too. I made thru flu which took a month & everybody specially my doctors were quite worried after my lungs malfunction and the following operation to restore it's function. But anyway life is good & sharing the love with others, even better.
Take care,

REPLY
allisonsnow | @allisonsnow | Mar 5, 2018
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

Made me smile when you wrote "Nobody ever told me I looked fab when it was important" and then it made me sad. I wish you had support when it was important, but know that you are making up for it now ! Connect gives you so much support!!!!! and you can tell people mean what they say , they have been thru it(what ever it is), What bothered me the most about what the Dr. said was Don't expect to much....WHAT ...I expect everything!!... I expect to be treated like an intelligent human being....I have earned the right to be respected.....I WILL maintain my dignity till the end...AND MOST IMPORTANT .... I expect...no I KNOW.....that God has a plan...I don't know what his plan always is but I trust him.....Nine years ago I was told I had months to live and here I still am.. it has been a difficult journey but with all the prayers and support in every direction I am able to LIVE my life...not the same life I will admit but I able to continue with HOPE and acceptance. I am no angel I get very! frustrated sometimes(read some of my past posts LOL) but with help I work thru it. Well ...will quit rambling for now. I admire your strength and sometimes some Dr.'s need to be put in their place! LOL

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