Thinking about WHEN while living with metastatic colorectal cancer

So sorry for what you have endured….you must be pretty strong to survive all that…when i was diagnosed with a large tumor, I told the family I’d rather have some shorter quality time rather than a longer time that could be hard on all of us…I felt some resistance from them but wanted the docs to know how I felt….i asked family to help me organize my financial and legal affairs- we worked together and were very relieved to have that in order, so we could focus on what was important to me, to us…..as it turned out I had a rare cancer, rare mutations and we found very good treatments, thank heaven…had it gone another way, I would have chosen palliative care, as some patients do surprisingly well on it…an older cousin did combo chemo and immunotherapy and then switched to all immunotherapy and he’s doing really much better…all of this says we don’t know the future, but we want to maximize the here and now !! Maybe your days or months or years be really good ones !

@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.

@colleenyoung this is an important post, questions people shy away from but really are on our minds….when i was first diagnosed, my tumor grew very fast during that initial testing period, and I had no idea what would happen…so I saw my lawyer, had papers drawn up and did planning with the banks , so my family wouldn’t be left in the dark…my closest family member was very helpful…turned out, I’m almost 1 year NED…grateful for that, and glad these things got done. Best to all.

Thanks Colleen for bringing me in. popobrady I'm glad you posted here--these are important thoughts and questions. First, let me address getting affairs in order for a spouse. When I was 41, my first husband died and left a complete practical mess. I swore I'd never do that to someone else. 3 1/2 years ago I was told I had 1-2 years to live, due to a rare aggressive breast cancer. I threw myself into tidying up all legal, financial, and planning aspects. I pre-paid my funeral. I gave some money directly to our kids and to my half dozen nieces and nephews. I planned my funeral. Oddly enough, I truly enjoyed all this! It all felt right, and clarified some of my goals and relationships. If you can take care of business as an incredible gift you can give your spouse, that might help you start to do it. On a positive note, I'm still alive, and doing well with a minimum of treatment. I do have a palliative care doctor, and as I was a hospice volunteer I plan to go into hospice when needed. Anyway, thinking of you and your situation. I've had to let go of worrying about my family should I die. I'm seeing more and more that they are all strong and also united with each other. Please enjoy the things you can, including memories and connections. I appreciate your honesty.

@mir123 love your post, and glad you are still here ! Doing these things really can be a ‘gift to a spouse’ or other family member as you aptly say…enjoy your life !

@nycmusic Much appreciated!

Thanks, Colleen, for bringing me into this thread. It’s a topic that must be frequently on our minds but does need an airing. We all have different situations but it seems to me the common denominator is the need to make life easier for our loved ones and ourselves when we finally depart this life. I'm so impressed by those who have planned ahead but ashamed to say that I've only just started to get my financial affairs in order! I guess I'm ever hopeful that a succession of ops since November 2022 on the bowel, liver and, most recently, the lungs with good recoveries from the first two and currently recovering slowly from the lung ablation ops, will result in more good years of skiing, walking and cycling but it's time to be more realistic! As a result of this thread my New Year's resolution has already been decided!
Merry Christmas to all.

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

@popobrady

Does AARP have helpful info/services ? Social workers to help find decent local legal services ? Good luck— this is doable…you will feel better no matter what your health situation is. I did it when my tumor was growing fast and my future uncertain — doing this distracted me very well ! and it took one worry off the table as it were.