What tips do you have for the caregiver after a total pancreatectomy?

Hi @christinemb, I changed the title of your discussion slightly to reflect the caregiver question and I added it to the Pancreatic Cancer support group as well as the Caregiver support group.

There are many discussions about panreatectomy, like this one:
- Life after Pancreatectomy: How was your recovery? https://connect.mayoclinic.org/discussion/life-after-pancreatectomy/

See all: https://connect.mayoclinic.org/group/pancreatic-cancer/

But I like your question about what can the caregiver expect and tips to help your husband's recovery. When is your husband's surgery? How are YOU doing?

Thanks for updating my post title and adding it to the other groups. I'll be checking out the other discussion groups. This entire experience has been a lot to process and sort through. Turns out that the total pancreatectomy scheduled for yesterday was not performed as planned. The gall bladder was removed, as well as some noncancerous lesions on the liver. However cancer was found on peritoneal implants and I was told this indicated a stage 4 diagnosis. The surgeon feels that the pancreatic masses and other issues will be best treated with additional chemotherapy. When I left the hospital yesterday evening, my husband was not aware of all this . The surgeon and hospital doctors will be explaining all this to him today. I'll be back at the hospital later this morning with additional questions for the docs.
As for me, right now I feel like I just want to cry. I get the sense that there's some "hedging" when the doctors have spoken to me about my husband's condition. They have all been very kind and have offered detailed explanations when asked, yet I feel that they're not telling me everything. I know that they can't offer a definite prognosis and I understand this, but it's still frustrating not knowing exactly what's going to happen next. I worry about how I can best help my husband get through this when I'm having trouble getting through this myself. Thanks for asking. I really do appreciate that.

My husband was diagnosed with pancreatic cancer in May 1025. He had the whipple surgery. Very tough 9 1/2 hrs of anguish. It has been a long year for recovery but he's finally starting to come around. after 12 rounds of chemo. He chose the aggressive chemo treatment. At his age of 79 he should have done the lesser treatment. He's finally gaining weight but the side effects of the treatment were not expected. He still has adema on the legs and hands and diarrhea and worst of all, brain fog. He's also cold every day. This could be from loss of weight. We're looking as to why the adema continues. I'm trying to think positive every day but is one of the roughest situations we been in. Be very patient because they can become very critical about everything. Remember they're not the same person you knew and can get frustrating not to be able to help you. I try to keep him busy with physical therapy to improve his walking and recently took him to a lymphatic drainage massage to improve his water retention. Ask a lot of questions for the Dr. and continue to monitor him, any changes report to Dr. men don't tell you. You habe to be their advocate with meds, doctors and whatever it takes to make him comfortable. As he gets better,
ask him to do little things to help in the house. (IF he can) this will help him a lot. Wishing you the best.
Don't forget yourself. Find a friend and go out for to get fresh air.

Thank you for the kind words and great suggestions. The behavior and attitude changes HAVE been the most difficult (and frustrating!) to understand and it helps knowing that these changes are part of the "disease". Thanks for taking the time to respond...it's much appreciated 🙂