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

Posted by christinemb @christinemb, Apr 25 6:44am

My husband's having a total pancreatectomy in a few days. What can I expect by way of caregiving once he's back home? Any suggestions?

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sdsharp | @sdsharp | 1 day ago
In reply to @christinemb "The original surgery for the total pancreatectomy didn't go as planned. As the surgery progressed, there..." + (show)
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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.

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@christinemb I am new to this forum. But I hear every word of what you are saying. I’m sitting in the hospital while my husband has his 5th procedure to drain nercrotic cysts and adjust the stents . We have been going through this for over 4 months. I’m thankful for the doctors that know how to do these procedures but no answers other than waiting. My husband was actually home for 5 weeks this last time but stubborn and in pain for 2 of those weeks. I am trying to keep an every large house and yard afloat while still raising 2 teenage grandkids. I am pretty strong and also sooo Angry about all of this. Today when he left for the OR was the first time I felt totally hopeless and sad. I’m not a crier but today I am. Hugs to you.

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