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Thinking about WHEN while living with metastatic colorectal cancer

Posted by popobrady @popobrady, Dec 8, 2025

I had emergency surgery for a full bowl blockage in 2023 stage 3 CRC. Surgeon was able to resect and started 5FU only chemo because of existing neuropathy from diabetes. Went through 9 cycles without major issues and CEA came back below 9. I had high PSA levels and had 20 radiation treatments for stage 3 prostate cancer. Everything looked good until April 2025 when I had a lung issue that required a CT scan and showed multiple 2cm lesions in both lungs.
Scheduled palative chemo for CRC right away but treatment was delayed by 6 months due to pneumonia and pulmonary fibrosis. Went on hospice but eventually became well enough to start chemo treatment in early October.
I’ve completed 3 cycles of chemo with increasing side effects but stopped to get radiation treatment on my ribs which had fractured due to continued spread.
I’ve missed 2 cycles of chemo and will restart Dec. 15. I had a CT scan done this past Friday with no report to my portal yet. Blood CEA & C-19 reports have doubled since October during chemo treatments. My wife is scared to death and I’ve been hesitant to get all my affairs in order for her.
Big surprise but I’m finally getting concerned about the WHEN question.
I actually feel OK now, but have been off chemo for a month. Other than continued fatigue, I am now questioning when to go off treatments and enjoy the time left with my family. They all want me to last as long as possible but I’m scared of what they will have to endure with me dying at home.

I apologize for sending this depressing message and asking for undeliverable hope, but it’s late at night and I’m feeling hopeless. I am thankful that I can enjoy this holiday season and hope that we can all focus on making lasting memories for those we leave behind.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

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apinzonc0627 | @apinzonc0627 | Dec 23, 2025

Lo único que te puedo decir,esto es paso a paso y no pierda la fe que hay un Dios que todo lo sana.
Que pases felices fiesta junto a tu flia.

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myjiggers1 | @myjiggers1 | Dec 28, 2025

I am with you my friend. I am petrified of the when question myself. Its not fear for me because I will be off in heaven, but I worry for my son. You should definitely put your affairs in order now to take the stress off your family after. My dad just passed and did none of that and it was a crapshoot. I would encourage you to pen letters for them to read when you are gone. I myself am on maintenance chemo til it no longer works. I have made it a year so far and am praying diligently for the opportunity to see my son graduate college and reach his dream. He is on the spectrum and I am his person…. It’s my biggest fear to leave him. The end I hear is not pretty regardless of being on or off it. I would give it some time and a good effort to ease your families mind. When your dr says its not working…. Then take that precious time with your family. A last vacation or memories. We don’t know our time. Only God does… so smile thru your pain and leave a legacy of love. You may have years or you may have months… you may be a miracle. This may not be the thing that takes you. I wish you love and grace and peace.

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popobrady | @popobrady | Dec 28, 2025
In reply to @myjiggers1 "I am with you my friend. I am petrified of the when question myself. Its not..." + (show)
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I am with you my friend. I am petrified of the when question myself. Its not fear for me because I will be off in heaven, but I worry for my son. You should definitely put your affairs in order now to take the stress off your family after. My dad just passed and did none of that and it was a crapshoot. I would encourage you to pen letters for them to read when you are gone. I myself am on maintenance chemo til it no longer works. I have made it a year so far and am praying diligently for the opportunity to see my son graduate college and reach his dream. He is on the spectrum and I am his person…. It’s my biggest fear to leave him. The end I hear is not pretty regardless of being on or off it. I would give it some time and a good effort to ease your families mind. When your dr says its not working…. Then take that precious time with your family. A last vacation or memories. We don’t know our time. Only God does… so smile thru your pain and leave a legacy of love. You may have years or you may have months… you may be a miracle. This may not be the thing that takes you. I wish you love and grace and peace.

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@myjiggers1
That was moving and well said. I admire your commitment to your son and everything your journey has required of you.
All we can do is make ourselves and our loved ones proud till The journey ends, as it does for all who live.

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Colleen Young, Connect Director | @colleenyoung | Jan 8 2:43pm
In reply to @popobrady "Thank you, Colleen, for helping me get more perspective on how others are dealing with the..." + (show)
Profile picture for popobrady @popobrady

Thank you, Colleen, for helping me get more perspective on how others are dealing with the "thoughts" side of this condition. It is so rewarding to see positivity and compassion from others, who are going through a similar journey. I want to be someone who makes my family and friends proud of how I deal with this chapter of my life.
I could use some pride in myself, as well, and now intend to complete the long list of things to be done.
I have looked online about getting my affairs in order but there is not much on who to go to for assistance on the particulars. Any advice on helpful websites or organizations that can assist me on what needs to be done and the best order to proceed. I now realize the sense of satisfaction I can achieve by doing the work needed to ease this transition for my family and myself.

Merry Christmas and a memorable Holiday Season

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@popobrady, you might start by meeting with an oncology social worker. They can be so helpful is guiding where to get started.
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

There are a variety of online services that can help. Here are a few I found using Google. I'm not familiar with any of them, so this is not an endorsement.
- End-of-Life Planning: The Definitive Guide & Checklist https://www.willful.co/learn/end-of-life-planning
- End of life planning https://www.nicenet.ca/articles/end-of-life-planning
- The Conversation Project https://theconversationproject.org/

And remember, Rome wasn't built in a day. You don't have to do everything at once. I recommend doing some activities that bring you joy and bring you closer with the people around you as an antidote to doing the logistical things. When working with my parents on some of these things, we made sure to sprinkle liberally with memories, understanding, and loads of laughter.

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premi | @premi | Jan 11 12:38pm
In reply to @colleenyoung "@popobrady, I hope you don't mind but I revised the title of this discussion because I..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@popobrady, I hope you don't mind but I revised the title of this discussion because I think it is an important one that is often considered taboo with family. The thoughts about "when" are familiar visiting thoughts to anyone living with cancer. This is a safe, non-judgemental place to talk about the important things you outlined
- When to stop treatment?
- When to get things in order, with whom and how without freaking people out?
- What is important to me now? What do I want to enjoy?
- What is palliative care and when is it the right care to have?
- When is it time for hospice? Do I need it?

I'd like to bring in fellow members like @gingerw @mir123 @verol65 @afvc @wifemom3 @martin77 @hardingv who are living well with metastatic cancer and may also welcome talking about the future. As @nycmusic says, be it weeks, months, years, these are questions we think about.

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@colleenyoung
Thank you for listing out the when and what questions .After the initial shock of Stage 3B CRC diagnosis the first thing I did was to talk about my end of life decisions with my husband and a very close friend as I was making treatment plans.
I could get time,as it was 28 days of Preop concurrent chemo and RT and 10 weeks break before surgery. More than The staging of the cancer ,my oncologist said the kind of cancer decides about the outcome and how you respond to it is something you have to wait and see.
All said and done,I made sure all the matters were settled before I went for surgery. It was easy to sign Do not resuscitate ,and sign body donation papers when I was in a stable mind.The initial shock is followed by acceptance.Then came the practical things to do,so that it is easy for the family and friends.Ultimately surrendering to HIM has given me all the peace.
Enduring is the next challenge and hope to be strong till the end

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