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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.

sistermarcy | @sistermarcy | 2 days ago
In reply to @gingerw "@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are..." + (show)
@gingerw

@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are experiencing advanced cancer, can relate. As for "jumping all over the place", your mind led you to write as you wrote, so it is in the order you needed. When I write, I rarely if ever edit anything; it just is as my mind placed it.

For myself, I often wonder about the legacy my life may leave behind. Having an incurable blood cancer that cannot be addressed by the more common method of stem cell transplant due to my kidney disease that is separate from that blood cancer, I am stuck for Life in the limbo of daily dialysis. Not a kidney transplant candidate due to the blood cancer. A never-ending circle. And at this time I have a "hard no" when it comes to switching to hemodialysis over my peritoneal dialysis if there was to be complications.

So, each day I am grateful for my feet hitting the floor. Even if I cannot feel the floor with my left foot due to neuropathy! And each day I attempt to be a role model of what one can do with limited energy or limiting health concerns. No, I won't do the dunk tank at our little town's 4th of July celebration, but I can sell tickets for it! I can't march in the parade but I can drive my friend's 1947 Mercury for him.

Am I scared? Sometimes. But I want to think that over the decades, I have helped make a difference.
Ginger

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I love your reflections, Ginger. You speak for me and I’m sure many others. THANK YOU❤️

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sistermarcy | @sistermarcy | 2 days ago

Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my CA125 is rising. My oncologist prescribes a CT with contrast to see any tiny cells. She says it’s unusual to have this type of test discrepancy…anybody have similar experiences? In the mean time I’m focusing on the two “no cancer” tests.😊

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1 reply
marienewland | @mnewland99 | 2 days ago
In reply to @sistermarcy "Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my..." + (show)
@sistermarcy

Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my CA125 is rising. My oncologist prescribes a CT with contrast to see any tiny cells. She says it’s unusual to have this type of test discrepancy…anybody have similar experiences? In the mean time I’m focusing on the two “no cancer” tests.😊

Jump to this post

Yes, scans can be behind the cancer antigen; 125 in your case. Nodules and lesions have to be large enough to see. In my type of cancer (pancreatic) smaller nodules or lesions can be seen with endoscopy.

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jeshaw6801 | @jeshaw6801 | 2 days ago
In reply to @gingerw "@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are..." + (show)
@gingerw

@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are experiencing advanced cancer, can relate. As for "jumping all over the place", your mind led you to write as you wrote, so it is in the order you needed. When I write, I rarely if ever edit anything; it just is as my mind placed it.

For myself, I often wonder about the legacy my life may leave behind. Having an incurable blood cancer that cannot be addressed by the more common method of stem cell transplant due to my kidney disease that is separate from that blood cancer, I am stuck for Life in the limbo of daily dialysis. Not a kidney transplant candidate due to the blood cancer. A never-ending circle. And at this time I have a "hard no" when it comes to switching to hemodialysis over my peritoneal dialysis if there was to be complications.

So, each day I am grateful for my feet hitting the floor. Even if I cannot feel the floor with my left foot due to neuropathy! And each day I attempt to be a role model of what one can do with limited energy or limiting health concerns. No, I won't do the dunk tank at our little town's 4th of July celebration, but I can sell tickets for it! I can't march in the parade but I can drive my friend's 1947 Mercury for him.

Am I scared? Sometimes. But I want to think that over the decades, I have helped make a difference.
Ginger

Jump to this post

I am now in my 3 rd cycle of chemo for leiomyosarcoma. I went from stage two in Nov 24 to aggressive stage four in March 2025. Wow! That was quick but the CT scans were so vague in December it was not found sooner.

How is it to be stage four? Difficult at times when my chemo fatigue rules, other times I am quite normal except for being a house hermit. I miss my friends even tho I get cards and food gifts. I miss my activities like golf ( which I am too fatigued or it too hot outside) and my bunko girls, and choir and church. And they miss me. My social life consist of dr appts, massage, pt, . My spouse is depressed cause he can't plan our next big adventure. My kids are cautious. I can only see the grands when their noses aren't running ( which is most of the time)

So what do you do until the next scan: research next steps such as perpetual chemo therapy for stable lesions; or liver ablation or liver resection for greatly reduced lesions. When do you do this, why do this, what's the answer??
As you can see living with advanced cancer is full of questions, most which can't be answered until the next scan.
Sometimes when gardening I have the most peace because my mission at that point is to not understand my cancer but rather to obliterate that next weed, and to trim the roses for the next bloom, and plant the next flat of flowers that I overbought at the market. It's about the only time I don't think of my short future or how to prolong it. It is my solace.

Everyone says I'm doing great. But am I?. I never really know. But like gardening I focus on the next task like it is a weed. I try to plant love with my family. I try to care for my caregivers with love. Thanks for letting me share.

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