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.

@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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Nogginquest, your posting touched me. It doesn't seem fair for you to possibly miss out on things you feel so passionate about. When I worry about dying before I always figured I would, I also feel like it's not fair, but I remind myself that I already have had more time than lots of other people do. It's amazing how the obits talk about people dying in their 40s and other people getting to their 80s and 90s. It's crazy how some people have twice as much time as others, no sense to it, that's for sure.

I hope that was not upsetting, if so I apologise. You sound like such an amazing person. Think of how many people you have touched through friends, family and work. So, I agree that cancer sucks, and it's tougher on some than others. Hang in there. Enjoy whatever you can. Think of everyone you have and continue to touch. gp

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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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Hi Nogginquest,
I am so happy for you that you still do the job you love. It makes me actually a bit jealous. Of course cancer really sucks and I quite agree but we cannot do anything about it. I have had cancer for the past 23 years & I try to live each day on it’s own. I was a person who planned everything in detail and the calender was filled with dates and programs. Now it is almost empty but then I have the possibility to surprise myself. I have learned that comparing my life with others (specially those healthy ones) doesn’t help me at all but waste the precious life I have still. Out there are richer, healthier, older, more fortunate, people with MS, childless people, disabled, people living in war zones, human beings who are turtured, those who live in fear, children who die because of cancer & more. I am & you are the lucky ones, to be able to live ”even for a short while” and do what we love to do. Enjoy your days and months or years to come. By the way I am stage IV and it has spread to other parts, too. It has been like this for the 3 years and of course there are downs, black holes and frightning moments when I wake upp, struggling for air & wishing that it would be over now. Then I look at the sky, my surrounding, my family and can breath again.
My friend enjoy the work you do, create all the things you enjoy doing and hopefuly you would be there with every event.
Good luck,

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@saltis….I love your posts!!! I am just sending a quick note (I hope) am writing this at 6am instead of on my way to bed (at 2-3) when I have a tendency to ramble. Your 2nd sentence ….I am jealous also, I loved that I could work with people and for the most part loved the people I worked with so even after 9 years I miss being able to work (the breathing and weakness). The empty calendar and quite phone do get me down some days…but then I realize my battery is dead ! I am such an airhead these days LOL I also was always on top of things a real planner and gosh darn it CANCER does not follow directions or stick to the plan!! and I used to be ( still am) big on plans. The Dr.s and I decided to stop chemo 1/2 way thru side effects ,but mostly, just wasn't working

still coming to terms with that

Oncologist appt. end of april so will see if I am stable or progressing, had new spots last time and I still have no idea of a possible plan as far as chemo goes we are in the "well we could try" phase and that doesn't fit my plan at all !!!!!!! I got lost along the way and forgot it is Gods plan… not mine and definetley NOT CANCERS. I have been giving cancer way to much power over my life and the fact winter just won't leave YUCK…IS aPRIL AND WAS 6 DEGREES WITH OUT WINDCHILL (sorry about the yelling)
and then. . something happens that make me so glad I am still alive
My grandson, almost 4, is for the most part non-verbal, he just chooses not to talk and is also lacking some skills
He , Abel, gets on the phone and says "I love you gramma"
I LOVE MY LIFE (YELLING ON PURPOSE)
Have a great morning to all

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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.

Jump to this post

@nogginquest Keep doing what you love for as long as you can do it. Stay strong for all those people you have touched. For me Cancer is a ONE day journey. Every day I wake up is a new day and a new chance at doing what I love to do. Some days I can do it…..some days I let slip by to regain the strength for the next day. No matter what happens I get to live one more day and feel so happy about it. I have lived with one motto since my cancer metastasized 5 years ago and it is this. " I'll probably die from cancer, but it ain't gonna kill me". Every day I get is a good day and I can find a positive in the day no matter what the news is around me. I've not worked in almost 2 years but when I did work I did not work because I loved what I did. I did it for the paycheck but I really did not enjoy my job. Now that I am away from my job I feel like I've been released to go have some fun and to really do a few things I love to do. I'll keep making plans for future days no matter what my diagnosis is. Yes, cancer does suck. But what sucks worse is letting Cancer dictate what you do today. Go out and make every day a great day no matter what the Cancer does.

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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.

Jump to this post

I was diagnosed with stage 4 pancreatic cancer a year ago and I also have the BRCA gene mutation, so I feel your pain. I am 60 years old and I feel like I am a walking Time Bomb just waiting to explode. Although I feel great today I always wonder what tomorrow will bring. Cancer does suck!

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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.

Jump to this post

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.

Jump to this post

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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