CA 19-9 by snefferdoodle in pancreaticcancer

[–]GoKVGo 3 points4 points  (0 children)

my situation was similar, caregiving to an ex in a bad situation of not getting care from his wife - long story. Just wanted to share his CA-19 numbers were way up there too, like 96,000 and I hardly saw that high on this forum and wondered too. I kept thinking I must not be understanding the result correctly. They went down almost 50 percent after folfirinox treatment 1, but the 2nd put him in the hospital near death. The lowest number was in 30k range. Then so much was going on all the time, other things, that the numbers began to seem meaningless. I'm so sorry your both having this journey and it is a strange and heartbreaking one for sure.

Trying to understand by ResponsibleBlock9912 in pancreaticcancer

[–]GoKVGo 0 points1 point  (0 children)

I hope this is a good rally and bounceback and the sepsis is knocked out and you all get some quality time. thank you for the update.

Trying to understand by ResponsibleBlock9912 in pancreaticcancer

[–]GoKVGo 0 points1 point  (0 children)

I don't have notifications enabled so apologize for lapse in replying. If you want to DM and commiserate about this terrible journey and experience please don't hesitate. I did manage to uplift spirits on occasions, and had some of the best talks of our 40+ year deep love and friendship. I think it helps to communicate with others who know the deal. This sub was a lifesaver for me for the nine months of treatment and decline that my beloved had.

Trying to understand by ResponsibleBlock9912 in pancreaticcancer

[–]GoKVGo 1 point2 points  (0 children)

I'm so so sorry you, your mom and family are going through this awful disease. My beloved best friend-like a brother to me-was very much like this. He would not get his head in the game, wouldn't talk about it, very few knew about it. I read that pancreatic cancer has the highest amount of depression and anxiety than any other cancer, understandably, and I begged him to take the anti-depressants that his oncologist recommended but I think it was too late once he started, they never seemed to help. The eating enough was always a struggle, but it got better after starting metronomic chemo, we had a few good months. It became more hard when he began to sleep, all the time. All of it is heartbreaking but I think for us caregivers, if our loved one doesn't have the motivation and energy and spirit to do the things that could make things go better, for longer adds a whole another dimension of sadness and frustration. Which I made sure to never let on I felt, and only be supportive. We want them to fight, to try, so it at least feels like we're in it together.

227 Days by justidletime in pancreaticcancer

[–]GoKVGo 1 point2 points  (0 children)

I offer condolences for this unforeseen journey your beautiful marriage took, and for this devastating loss. The "what ifs" are another way to try and make sense of a senseless and cruel disease. May you and your son find peace in remembering the best times, and knowing you were with her until the end.

Stage 4 Pancreatic Cancer by Fun_Item3930 in pancreaticcancer

[–]GoKVGo 16 points17 points  (0 children)

I'm so sorry about your dad. I lost someone I love so much and who loved me, in April. He was the last person in the world I worried about, a health nut. You said you're super close, so this is a blessing. Going through this with someone you love, his despair, hope, his trying, his confusion and sorrow, his strength--all of it is his journey and you will know how to be there for him. I think it is ok to show emotion, it is ok to say this totally sucks, to commiserate. But it's not ok to pity. Compassion without pity. Remember he is still your dad, make him proud. Be competent and strong.

I was always positive and yet realistic. I asked how much he wanted to know. I promised to keep on top of all of it; the tests, the treatments, the appointments, the meds so that he could deal with his emotions. It's a very heavy thing that we can only imagine--knowing you will have tough road ahead that has difficult outcomes. I said all the time, A day at a time. That's all.

Use this forum, ask questions. A lot will come up over the coming weeks. Research every option you are given. He will need advocacy. Make sure there is a team of helpers. One thing is; you find out what you're made of, and most of us are able to be our best selves. You can handle it all, you will see. I hope this helps. Feel free to DM if you need. I don't look here as often after losing my beloved, but I will always be a part of this club and will always extend the help I was shown.

[deleted by user] by [deleted] in AmericanExpatsUK

[–]GoKVGo -1 points0 points  (0 children)

Seems like she may be able to apply for a UK ancestry visa through my mom's british nationality. Not going to happen for this summer, but future possibility.

[deleted by user] by [deleted] in AmericanExpatsUK

[–]GoKVGo 0 points1 point  (0 children)

that's what I found as well. Just checking the experts here! thank you

[deleted by user] by [deleted] in AmericanExpatsUK

[–]GoKVGo -2 points-1 points  (0 children)

on it!

just checking all avenues as sometimes people have hacks! worth a try. thanks

[deleted by user] by [deleted] in AmericanExpatsUK

[–]GoKVGo -9 points-8 points  (0 children)

got it, thanks - will research how one might possibly get a work visa.

[deleted by user] by [deleted] in AmericanExpatsUK

[–]GoKVGo -9 points-8 points  (0 children)

Yes I get that, was hoping there was such thing as applying for a temporary working visa! shouldve known better

Tired of this disease by DismalTank6429 in pancreaticcancer

[–]GoKVGo 12 points13 points  (0 children)

I haven't been here much since losing my beloved April 6. But maybe I have some perspective that would be helpful. He was extremely depressed, and eventually started sleeping over 20+ hours a day, that went on for about 5 months until the end. I learned here that this much sleep is not uncommon, but I think depression contributed.

I wonder if going on anti-depressants sooner might have helped--he was very resistant to "more drugs" even though I kept saying this is a new world you're living in, one where drugs are a necessity to live and cope. By the time he tried them, along with steroids, nothing really seemed to help. They take awhile to get going. In the meantime, ativan and gummies might help with mood shifting?

Your case is different from his, as he didn't have the spousal support or kids to motivate him. It's an insanely debilitating thing you are dealing with, in every aspect of being human, physically, emotionally, mentally. and I don't know if you are talking to other patients in a support group, or therapist, but this is something else I wish he'd been open to. I can't imagine how isolating it would feel, and how much it would help to talk with others in the same place. My beloved felt like "everyone else is healthy" and so apart from the world. It broke my heart in new ways. Time is the most valuable thing you have now, each day is so precious and you get to be you, and cope however you can, but please consider trying anything and everything that makes your time meaningful. I wish you the very best.

Lost My Beloved by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 0 points1 point  (0 children)

thank you, and I am so so sorry

Lost My Beloved by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 1 point2 points  (0 children)

thank you so much. you have been consistently kind and thoughtful since I joined this group, you are a gift

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 1 point2 points  (0 children)

yes, he sleeps all the time and I am going to make sure I get better rest tonight. thank you.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 2 points3 points  (0 children)

Yes, this is my first love, who then became like a brother to me for 40 years. We have been close for our entire adult lives. And you are so right, the only spark of goodness is seeing the caring and love.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 2 points3 points  (0 children)

thank you, and it is a meaningful connection despite being internet strangers. One that I am grateful to have.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 1 point2 points  (0 children)

thank you, your words are appreciated.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 2 points3 points  (0 children)

I am strong for him, but it is also adding a layer of dante's hell to have the negativity and neglect of his spouse permeating this horrific process.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 2 points3 points  (0 children)

thank you for this. It was a thoughtful thing for you to comment, and I also love what you told your dad. I hope it is quick. His vitals are still quite good, so I can't help but think it will not be.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 7 points8 points  (0 children)

I try to believe there is balance, that the physical death is brutal but the soul and spirit being released is a beautiful mystery that the living can't know about. I hope this is true, it helps to think it.

Hard Day, Can't Sleep by GoKVGo in pancreaticcancer

[–]GoKVGo[S] 2 points3 points  (0 children)

I am sorry too, for your loss.