Talking Frankly about Living with Advanced Cancer

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

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.

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Very inspirational! I love your saying " I'm going to die from cancer but it ain't going to kill me." I like to say that I'm living with cancer instead of saying I'm dying from cancer. A good book I read years ago was it's Always Something by Gilda Radner.

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@nogginquest

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.

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You are right, @juliemangione

The unknowns of cancer do keep us all in suspense. When you feel like a "walking Time Bomb" as you said in your post, what do you do to calm yourself?

Teresa

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well I did have a good day even with all the pain I am suffering. As cold as it was I still went out! Went out with a couple guys I sold real estate with several years ago. I love those guys ....about 6 words about health and then we sat there another 2 hours just talking about "stuff" and "nothing"....It was great!
It is 2 o'clock I should start to think about going to bed. If I stay up much later I will over sleep and miss church. I hope all of you and this great support system had a great day!!!!! We are expecting more snow tomorrow. YUCK

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Dearest @allisonsnow, It sounds like a great night! Hope you wake in good time for church, too. If not, don't worry, look at it som a present from the above for all your pain. Continue enjoying the life we have. Take care, sweet Allison❤️

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Has started snowing supposed to get 6 in. but surprisingly I am in a good mood! got 3 GOOD hours of sleep ! so I am ambitious ...if I get half of my list done I will be satisfied. Does anyone here have that same problem? Even after all these years in my brain I am still healthy and I can breathe...so I make plans and get all excited and then reality sets in...
I am tired and panting on only my second time down the stairs to the basement. My back is killing from vaccumimg...reality can be a bummer sometimes. But today I am going to try to keep pushing thru, I feel so good when I can get stuff done!!!!!
That is important in our battle with cancer...no matter what kind...keep pushing thru...take breaks, give into the pain sometimes but then keep on going. I have found that it is the sitting and doing nothing may help my back but it wreaks havoc with my depression. I feel so worthless most of the time and my husband can have a sharp and mean spirited toungue sometimes. I don't think he means to most of the time but he gets frustrated also. He has had to deal with being told to "prepare" himself more than once that's for sure.
oohhh! shake that off and back to work !!! Keep pushing thru !!!!!

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Well done with the vacuuming. Not a nice job but so satisfying afterwards. Do you write a to do list - keeping it realistic of course - but good to tick things off. It's the simple things ...

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Forgive us husbands with "mean and spirited" tongues. I often am part of that grouping. It must be an abnormal gene that many of us were handed and have not learned to control it. At the end of the day when we are composed and are organizing our thoughts and considering our blessings we give our thanks, though many times not verbally expressed, to those we have often offended. It is so ignorant of us to emotionally hurt those we love. You are loved and admired, especially for your forgiveness, for your struggles I feel that your hubby many times harbors remorse for his actions. He loves you.

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to @alanr Please forgive me for maligning wonderful husbands, which mine is one of. Learning understanding and respect for each other can be difficult in normal times and I hope what I am living now Never becomes normal times. We all love and appreciate our caregivers whoever they maybe and it probably bothers him a lot that this third time he has not been able to be my caregiver. I was just starting chemo again when he had a horrific accident on his ATV and broke a hip and his pelvis in 3 places but I tried the best I could to take good care of him when he came home. I did have to break down and accept help for his sake, I didn't want him to see how hard it was for me when taking care of him was the least I could do. Months later and we are both still in pain and just plain tired but he works so hard and plays hard because it gives him joy. Thanks for reminding me to be thankful above all.

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@allisonsnow

Has started snowing supposed to get 6 in. but surprisingly I am in a good mood! got 3 GOOD hours of sleep ! so I am ambitious ...if I get half of my list done I will be satisfied. Does anyone here have that same problem? Even after all these years in my brain I am still healthy and I can breathe...so I make plans and get all excited and then reality sets in...
I am tired and panting on only my second time down the stairs to the basement. My back is killing from vaccumimg...reality can be a bummer sometimes. But today I am going to try to keep pushing thru, I feel so good when I can get stuff done!!!!!
That is important in our battle with cancer...no matter what kind...keep pushing thru...take breaks, give into the pain sometimes but then keep on going. I have found that it is the sitting and doing nothing may help my back but it wreaks havoc with my depression. I feel so worthless most of the time and my husband can have a sharp and mean spirited toungue sometimes. I don't think he means to most of the time but he gets frustrated also. He has had to deal with being told to "prepare" himself more than once that's for sure.
oohhh! shake that off and back to work !!! Keep pushing thru !!!!!

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I'm so glad for your good day. I've been playing a scavenger hunt all day. My local library, and my workplace, is offering a combination virtual and physical game this week.

BTW, I have stage IV pancreatic cancer, but I'm currently in partial remission. I'm trying to live as much life as possible while I can.

Keep living to the fullest, and enjoy every small victory.

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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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