Limitations and expectations

Posted by Suppiskey2surv @suppiskey2surv, 19 hours ago

Mornin everybody!

Toasted coconut flavored coffee ☕️ this morning. Mmmmm.

Just a couple of thoughts this morning. I promise.

My husband has his appointment this afternoon with that pancreas cancer prevention oncologist to go over his last MRCP scan. The radiologist results sounded encouraging, as he noted things looked "stable" when comparing that IPMN they're watching after MAYO recommended a yearly scan last year but, obviously, each year we will be a little anxious until a specialist agrees. I decided to stay home this time. They don't really care if I'm there or not; particularly, here at the local level. But I thought it a good day to remind myself of the limitations I've decided to set this past year in the ways I just can't go on trying to DO and say things to people HE should be doing for himself when he's able. I used to be considered "obese" in a lot of my doctor's notes, so about a year ago I lost those nasty 45 pounds with exercise and a lot of soul searching. Part of that process was coming to terms with how and why I found myself in the middle of all those terrible adjectives. Part of the reason for that was that I was continually obsessing about my husband's health, foregoing my own sometimes. So, I told myself, "No more sleepless nights on a lumpy cot in the hospital if we found ourselves there again. No more driving to the ER at the speed of light if he needed to go there. An ambulance (although wayyyyyyy too expensive) would just have to do. No more talking to them FOR him if he could speak. No more "expecting" things to be hunky dorie if I spent the time in front of a computer all night researching everything. "Hoping" for that, yes, but bad things just sometimes happen. Thinking that the "God" I prayed to before was in some other place, working in the "mysterious" ways I was always told he did but that that "God" still loved us and we better still love "him" the whole time we were suffering . . . just didn't make sense to me anymore.

Soooooo, I did a lot of mind-bending and came to the conclusion that that "God" was not in "some other place". "He" was inside of me, working just as hard as I was, trying to turn things around. I just needed to reject what was happening, hating all the scary stuff and realize all the horror comes from somewhere else, not from the very place I was turning to for strength and hope.

That belief isn't for everyone, I realize. We all should have the right to choose the beliefs that gets us through the toughest of times. No one should put themselves in that position. When I stopped doing that, it helped me shed that 45 pounds and all I felt was an overwhelming sense of love. I was judging myself, my husband and all the medical professionals we were going to for help. Don't get me wrong. I will always fight for justice and will fight for truth in all things, but I do that with the realization that setting certain limits and expectations I can live with, realizing I don't need to do that all by myself. People like all of you, my husband, my friends and family . . . and taking care of myself surrounded by love are my best tools to fight and keep hope alive in the midst of challenging times. I DON'T have to do it all by myself. There is always love to be found and THAT is where I find the strength and hope we both need to fight for the outcomes we hope to find.

Okay, time for that cup of coffee ☕️.

😘

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Hello @suppiskey2surv.
Thank you for sharing your thoughts. I find your transparency inspirational. I can also relate very closely to the spiritual perspectives you mentioned. Also admire your decision to set limits that would benefit your wellness.
I realize all of our patient care / life changing experiences can be very different but we all share that common thread of caring for loved ones and our individual realities are not cookie molds of others. Strong empathy can still exist.

I remember when my wife could effectively articulate subjectively. That was before her first of four battles with cancer. A left frontal brain tumor 2013. Radiation left its mark with a Neuro deficit. Over the years I've had to step up advocacy for her. Cognitive impairment has been interfering with her ability to communicate and remember. I was reminded of the month we stayed at The City of Hope in Los Angeles 2017 for chemo and stem cell replacement. I ended up in the local ER because of my lower back. That nasty lumpy cot was a recliner that made into a bed. Didn't plan for that surprise.

We believe God has been with us thru all the traumatic events. especially when we look back in retrospect and see how things could have turned out much worse. We're so grateful to have each other. She's 67, I'm 73. So much more to the journey but no need to share each traumatic adventure. But being able to share with other caregivers on this site is therapeutic for me. I like how you mentioned being surrounded by love. The support from family and friends. We've been so blessed to have had help when we needed it. Asking for help is so important.

Praying that your husbands condition continues to remain stable and even improves. You're doing a good job.
Ernie

REPLY
Profile picture for lungranger77 @lungranger77

Hello @suppiskey2surv.
Thank you for sharing your thoughts. I find your transparency inspirational. I can also relate very closely to the spiritual perspectives you mentioned. Also admire your decision to set limits that would benefit your wellness.
I realize all of our patient care / life changing experiences can be very different but we all share that common thread of caring for loved ones and our individual realities are not cookie molds of others. Strong empathy can still exist.

I remember when my wife could effectively articulate subjectively. That was before her first of four battles with cancer. A left frontal brain tumor 2013. Radiation left its mark with a Neuro deficit. Over the years I've had to step up advocacy for her. Cognitive impairment has been interfering with her ability to communicate and remember. I was reminded of the month we stayed at The City of Hope in Los Angeles 2017 for chemo and stem cell replacement. I ended up in the local ER because of my lower back. That nasty lumpy cot was a recliner that made into a bed. Didn't plan for that surprise.

We believe God has been with us thru all the traumatic events. especially when we look back in retrospect and see how things could have turned out much worse. We're so grateful to have each other. She's 67, I'm 73. So much more to the journey but no need to share each traumatic adventure. But being able to share with other caregivers on this site is therapeutic for me. I like how you mentioned being surrounded by love. The support from family and friends. We've been so blessed to have had help when we needed it. Asking for help is so important.

Praying that your husbands condition continues to remain stable and even improves. You're doing a good job.
Ernie

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@lungranger77

Your words, so sweetly offered in response, meant so much to me. THANK YOU!!!!

You, too, have had your share of "bad" . . . haven't you? My goodness! How inspiring!

Ernie . . . you are, truly, one of a kind! I don't mean to disparage your gender or anything . . . but you are, truly, one of a kind!

I suppose, if faced with more "bad", I will pick myself up and do what needs to be done; but, as I get older . . . I simply have to set certain limits as to how much I can do . . . physically OR emotionally! If my husband can mow the grass and spend 3 to 4 hours, outside doing stuff . . . I've decided he can certainly speak for himself now and again and monitor his own health when he needs to. "THEY" and even he doesn't seem to appreciate much of it anyhow when I try to "help". Just causes friction and resentment between his doctors and between himself and me. Sooooo, like today's appointment, he is pretty much on his own to deal with it. He left a little while ago so, I've decided to go outside and take advantage of the beautiful weather cleaning up a few flower beds.

Wishing you and your wife all the best!
Dawn

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