Talking Frankly about Living with Advanced Cancer

@IndianaScott Like you and @burrkay I have gotten all my papers together, back in 2015 when my rare kidney disease diagnosis was given. Each day is another one of gratitude. I filled out a 5 Wishes booklet to indicate my desires, and even wrote my own obituary. Funeral plans made and paid for, and that is included in packet. While it is such a sensitive subject for so many to address, my approach was to extend my kindness to others and make things as gentle as possible for them, thinking what I would like to know if in their shoes (because I have been!). And don't forget to annually or semi-annually review everything if there are changes.
Ginger

Just wanted to share...I'm thinking this is the place to share both good and bad...this is the reality of the journey I'm in. I was diagnosed early Nov 2018 and had ca 19 result of 419,300. (The highest one of my health professionals ever saw). started chemo and Feb 5 went down to 59,259. Since them my liver function blood tests have been steadily trending poorly . They took another ca 19 test last week. It's went up to 101,750. Had an MRI today, waiting for results. Doc is thinking we'll change chemo. I'm a skeleton compared to my pre-cancer self. I still feel like this is not real....

Just wanted to share...I'm thinking this is the place to share both good and bad...this is the reality of the journey I'm in. I was diagnosed early Nov 2018 and had ca 19 result of 419,300. (The highest one of my health professionals ever saw). started chemo and Feb 5 went down to 59,259. Since them my liver function blood tests have been steadily trending poorly . They took another ca 19 test last week. It's went up to 101,750. Had an MRI today, waiting for results. Doc is thinking we'll change chemo. I'm a skeleton compared to my pre-cancer self. I still feel like this is not real....

@IndianaScott Like you and @burrkay I have gotten all my papers together, back in 2015 when my rare kidney disease diagnosis was given. Each day is another one of gratitude. I filled out a 5 Wishes booklet to indicate my desires, and even wrote my own obituary. Funeral plans made and paid for, and that is included in packet. While it is such a sensitive subject for so many to address, my approach was to extend my kindness to others and make things as gentle as possible for them, thinking what I would like to know if in their shoes (because I have been!). And don't forget to annually or semi-annually review everything if there are changes.
Ginger

Good point @burrkay My father created what he called his 'Just In Case' book. It was a three-ring binder with all this type of information in it. I copied that idea and added a few modern touches, which my dad never had to worry about, such as passwords that might be needed, what accounts are autopay, where all my electronic photos are backed up, etc.

I, too, gave a copy to each of our adult children along with a copy of my POAs, et. and have a copy in our home (where they know where it is) so they can have unfettered access to it since it also includes my last wishes. Plus this way I have one copy easily accessible,which I can update as passwords change, accounts close, companies change names, etc.

I agree --- great to be able to share here on Connect!

Strength, courage, and peace!

@IndianaScott thanks for helping me learn all kinds of things, including how the discussion board works. Where would I see the electronic note you mentioned? thanks again

Hi @lbern The @ sign followed by screen name provides the person mentioned with an electronic note saying they have been mentioned in a post. It is helpful especially when someone asks a question so the post doesn't get missed and a question unanswered or acknowledged.

Thank you for the kind words. I understand your husband's feelings! These issues/concerns, etc. are some of the tough stuff in life! My wife and I had several fits and starts with addressing them until we finally dug in and attacked them. Luckily we have a daughter who was relentless on the importance of getting our wishes in written form since she is an attorney. But it still wasn't easy for sure!

One side benefit to being well prepared was it allowed me to avoid a whole lot of arguing when it came to end of life decisions and issues. Sure, extended family often disagreed with actions taken, but their complaints were faint compared to the fact I knew what it was my wife wanted and could tell/show them.

Kind of funny in a way story. All of a sudden, out of the blue, my wife asked me to get a pencil and paper to write down her ideas for her Celebration of Life, which she wanted to be held in our home. Once we were done with that she asked me to get another sheet of paper. I asked 'what for?' She said 'I am going to give you the list of who I want invited to my Celebration.' I replied 'Uhhhh, honey, one does not usually invite folks to a service like this -- rather it is open to all.' She looked me in the eye and said "Scott, I do not want anyone in our home who did not give a sh*t about me when I was alive, in our livingroom blowing smoke up your a*s telling you how much they cared about me after I am dead.' We both shared a good laugh and then she dictated the names!

Different strokes for different folks as they say! 🙂

@ibern and @IndianaScott
As for “end of life” preparation, assuming the usual legal “mumbo jumbo” has been done, most of us overlook the obvious.
A friend who lost her husband unexpectedly, came up with a “Survivors List”. It helps account for those obvious day to day things that we take for granted; but fail to think what those left behind will encounter once we are gone. If your spouse pays the bills, where are the records kept? Put it in the list! What are the utility shut off requirements for winter? Add to the list! Who to contact for the yard care? Add to the list...etc., etc.,
We have done a pretty comprehensive “Survivors List” and placed a copy in our safe deposit box at the bank, provided a copy for our kids and our financial planner and lawyer.
If you would like a redacted generic list, let me know and I will be happy to put one together and send it.
Best of luck to all of us who are dealing with serious health issues...thank God we found Mayo Connect where we can share our anxieties and experiences with others!