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 🙂

@christinemb, just checking in. How are you and your husband doing?

The original surgery for the total pancreatectomy didn't go as planned. As the surgery progressed, there was a suspicion that the pancreatic cancer had already metastasized, so only the gall bladder was removed. Tissue samples were taken, sent to the hospital lab and to Mayo. Results showed that the samples were not pancreatic cancer (good news!) but were a form of mesothelioma (not so good news). It was decided that the best course of action would be to perform the total pancreatectomy after all. So...three weeks after the first surgery, the second was done. He's only 11 days home, still in pain, minimal/no appetite (lost 40 lbs since this journey began), and now diabetic as well. He seems to be getting a little better every day, but there's been so much to learn about his new diet and glucose control that it's been overwhelming. A new course of chemotherapy for the mesothelioma will begin as soon as the surgeon and oncologist feel that he can handle it. As for me, I'm just tired and find myself too often close to tears. So much emotion swirling around in my head, but I'm handling it okay, I think. It is pretty lonely, though. Thanks for checking...I do appreciate it.

@christinemb - I am so sorry to hear all of the things that you and your husband have gone through. It is a lot to process and it's been over six years since I had a total pancreatectomy and I still have challenging days. I had a nutritionist that specialized in type 3c diabetes early on and that really helped get me on the right track and glucose/diet stabilized. Happy to help if you need anything.

Take care,

- Matt

Thank you so much for sharing! Your words are helpful and give us hope. It sounds like you’ve come to terms with this…any suggestions as to how I can help my husband accept and move forward?
The endocrinologist is referring us to a dietician and I'm looking forward to hearing what they have to say. How the diet for 3c diabetes different from a regular diabetic diet? What questions can we ask the dietician to be sure we’re getting the best information for this situation? How long before you felt like "yourself" again? The hardest part for both of us has been looking toward the future. Any thoughts on what we can expect from now on? Sorry for the barrage of questions…this is so new to us and there is so much to learn!

@christinemb - I understand for sure. When I first learned that I had multiple pNETs that required the pancreatectomy, I figured I was a goner. The biggest game changer for me was meeting the surgeon and his explanation was that it was much more about the after care and management of the condition vs the condition itself. If I gave up, it wouldn't be fair to me or my family so I doubled down and did a lot of reading and educating myself. It sure beat the alternative for me.

Type 3c is a little more challenging as with the pancreactomy, as I have to use enzymes for digestion and that is a little more difficult to predict the blood sugar spikes and how quickly the food digests. Some days I miscalculate and go low and others not enough and I go high. I work off highs with physical activity and lows I treat with apple juice or glucose tabs.

I would ask the dietician about food and portion recommendations for the enzyme dosage that will be needed. I try to eat fats with carbs to smooth the spikes and stay away from bad actors for me (rice, noodles, etc.) and focus on portion controls. I eat three meals and three snacks a day and rely on my CGM to tell me when trends are heading in the wrong direction to get ahead of problems.

I felt like myself after a couple of months (but was doing light yard work on day 7!) and I do get frustrated when I am in the middle of something and need to stop and get my glucose back up. I look at it as God's way of telling me to stop and smell the roses.

I will tell you that I can pretty much do anything that I used to be able to do - biking, hiking, kayaking, yard work, RVing, etc. and just have to plan differently (carry my bag with glucose, meter, emergency glucagon, planning to eat on schedule, etc.) and look at it this way - my life isn't over, just different now.

My PCP calls me the healthiest sick guy he knows. One of the reasons I joined Connect was to share what I have learned and help someone else get through the tough times. I figured getting mad about it does me no good (but do allow some self wallowing at times 🙂 - but I keep moving forward.). Let me know if I can help in any way.

- Matt

Thank you for the wonderful ideas and for sharing your life-after-pancreatectomy. I've printed out your response and will be sharing this with my husband. I love your attitude! I hope I can help my husband reach that level of acceptance and strength to move onward. Your words are inspiring...thank you so much!