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How do families approach preparing for things to come?
My loved one is stage IV and doing reasonably well. Loved one, however, does not wish to discuss prognosis or future expectations with oncologist. Basically the approach is to do whatever the doctors suggest and not worry about whatever the future may hold. Quite admirable, really, but this leaves family members at a loss as far as preparing for the future. We want to respect this loved one’s approach to their own medical situation, but wonder how other families have handled what must be a somewhat common circumstance. Would an oncologist typically be willing to speak privately with a spouse or child? Are there other resources we’ve failed to consider. Planning for upcoming family events and vacations is what is driving the concerns. We want to fill time with love and fun-filled quality time together, but unclear how to plan such things without a better sense of what may be expected/possible in the near and longer term future. Change in loved one’s desired approach to the future is the one thing we cannot see changing. Otherwise all ideas and suggestions appreciated.
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Being the one with stage IV inoperable pancreatic cancer I can say it is sometimes easy to discuss some things, but not easy for others. I have been alive with this now for almost 2 years (known diagnosis). At first, I only tried to get my banking and things like that rearranged with my husband. I wanted to go places but had not the energy to accomplish doing a lot like traveling. Also Covid was still causing many issues. Now I am in radiologic remission where the cancer is no longer seen on CT. I am still cautious but try to increase my activities. Now, I could try to plan for things but there is always still a concern of what the next labs & CT will reveal. The near future (3 months) is somewhat easier now to think about. I find I am "preordering" books & movies believing I will be here to read/see them. I would welcome discussions that are planned out and take into consideration travel method, meals, restrooms available, do I need wheelchair or walker or cane?, what type of food service is available, crowd management. If I am in a good or stable mood, then that would be a great time to discuss possibilities for family events & vacations. Your loved one may be afraid to speak with the oncologist about prognosis. My husband attends all doctor/oncologist visits with me. No one, not even the oncologist, can predict what the future may hold. My first oncologist gave me 11 months with treatment. It will be 2 years in June that he told me that 🙂 I know my current oncologist has spoken privately with family members because the family members have told me when I selected this one that he will do this for them.
It is so hard to know how to approach this subject & being a retired nurse does not make it any easier. I do feel that we can plan or not plan & life will continue to happen. I could have a plane fall on our house. I could be hit by a car. There are a lot of "could happens" out there, but I look for the positive & say thanks for every day I am here. I still buy yarn, patterns & hooks like I will be here forever! As I have seen on Facebook lately: "I have enough yarn to live until I am 749 years old" :).
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11 ReactionsThank you! You provided a level of insight and honesty that is so helpful! Most importantly that at least some doctors would entertain questions from family when a patient does not wish to ask. Uncertainty is not easy for anyone and your response reminds me that it is just one of the variables that cannot be changed. We want to do what we can to make our loved ones’ experiences the best they can possibly be, but perhaps the lessons we must learn is that it is not within our control always to do so. So, I suppose, we just go forward in to the murky future not knowing, just like everyone else in the world. One wants to do all one can, however, to help. “Enjoy every sandwich,” as someone once said!
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3 ReactionsI also was diagnosed stage IV. 11/2021. Mets in liver, multiple lobes. High tumor markers, etc.
I am still here and enjoying life! Yes, my schedule somewhat revolves around treatment and recovery time but it also revolves around making every day count! I can tell you this:
Love is spelled T-I-M-E. By this I mean spending time together. Make every opportunity to just “be with”. Fabulous trips are nice but being WITH consistently is so meaningful to us that live between scans. Making plans is great, but calling regularly, having coffee together, taking a walk together-truly golden time. Kids/grandkids are great, but if it’s your Dad or Mom, they really appreciate time with just you.
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6 ReactionsI just read a helpful book, “A Beginner’s Guide to the End” by B J Miller MD.
Discusses things I had never thought of… lots of practical ways to deal with problems and concerns. Available on Amazon
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3 ReactionsBravo, so well said and captures true sentiments of how many of us feel and think! Congratulations on your process and thank you for your services of being a nurse. My mom was one and I know how hard but rewarding it can be at times.
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1 Reaction@mnewland99 hi there -Buy refundable tickets and go on your trips. New treatments are in trial and responses vary by patient. Be sensitive and supportive like you are and don’t talk to oncologist. What you are told you may convey and that is not what your loved one wants.
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1 ReactionThank you to everyone who has commented. I have learned a lot. Especially not to let the perfect be the enemy of what is good and done with love. May I always remember that!
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