Talking Frankly about Living with Advanced Cancer

i am new to this discussion group, but it certainly is right for me. I am facing a prognosis of 6-12 months, but 4 months have already went by and my folfirinox treatment looks like it's not working,although it helped first month. (pancreatic cancer). I am panicked thinking what can I do to prepare my family to live without me. Then I get tired and sleep and feel I've wasted precious time. I'm 58 and have 3 kids in college in their 20's, my heart breaks thinking of their needs and me not being there for them.

So sorry to hear about your prognosis.
Stay positive and pray!
My wife (stage 4 lung cancer) was told “4 months...maybe longer” in July, 2016...
She is still with us! She has a great quality of life and we attribute it to her Mayo team, strong faith in God, and a positive attitude...

I hear you @lbern My wife was in her 40s when she was diagnosed with her cancer. Your feelings/thoughts are many of the same ones she voiced to me. Most of her energy was needed to fight her illness, but when she felt 'up' she did do a few things that helped when she was gone. They didn't necessary remove her sadness, but she did feel some positivity from them. Writing down her wishes and arrangements was an immense help. Discussing and implementing needed changes to our wills, etc. also helped her. She reached out to a few folks she wanted to make amends with, while at the same time remaining comfortable ignoring several others who she was content to 'leave sleeping dogs lie' as she put it to me. She also gave a few gifts to family members. I must say she beamed every time she saw them with her gifted item on or when it was spoken about. This also cemented how important the item was to the person she gave it to.

She also bought a small lighted sign for us. We kept it by her bedside and often she'd hit the button on top to light it up and to reassure her she was doing what she could that day/at that time. You can see it here -- I now have it in a cabinet and often find myself giving it a tap on and again!

Wish I had something more concrete to offer...keep up the good fight!

Strength, courage, and peace!

thank you again @IndianaScott. First I have to say that I don't understand what the @name is all about, but I see you used it in your reply so I'm thinking I should try to do the same. Why do people use the @name? I'm obviously learning how to use this discussion board.... I've read your posts before and they are always so helpful. I hope to get my husband to start reading some, but since I'm still getting chemo, he is wonderfully hopeful, & reluctant to spend time at this point thinking about the end, but I worry about the toll this is taking on him....thank you for your responses and thoughts, they are very helpful to feel someone relates to my concerns

I also wanted to convey how beautiful your wife is -especially beauty from the inside that shows through her eyes and smile. These losses are so profound and I wonder how to help my husband prepare...

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! 🙂

Thanks @lbern I married WAY above my pay grade for sure! No doubt about it! I wish that photo had been in color since she had gorgeous green eyes. Side bonus -- she was 100% Italian and could cook up a major league storm plus her grandfather made wine in his basement! Oh, I was a lucky fellow!

I so wish there was some help I could give about helping prepare. Luckily my wife and I were partners in our marriage so we both did most everything, so the handoff of duties during her illness was simpler than say for my mom when my dad passed away and she had never done any bill paying, insurance, etc. etc. That made the transition for her all the more challenging.

I'll do some thinking on this one and again I say thank you for the kind words about my wife.

Strength, courage, and peace!

@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!

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