Hi Cheryl,
I’m in the US! I had no idea you were in AU!!!
Welcome to the board, and I wish that I knew of sources of help that are close to you!
I will contact the NPS here and ask them if they have any recommendations for someone living in AU.
Surely we can find something!!!
Welcome, welcome, welcome! I’m so glad you reached out.
They’re always something new to learn here and I totally understand frustration in dealing with the lack of knowledge with EPI and the many complications that may accompany the diagnosis.
I’ll get back with you ASAP after I call the NPF tomorrow!!!
Huge hugs from me, Gramny Dee

Good morning Cheryl from QLD
My partner had accidental finding of benign 5 cent size PNet in head and tail of pancreas. Had distal panc+spleen removed via laparoscopy last Oct'23. Type 2. Blood sugar is all over the place despite being on Metrex + Gliciside+Creon 25,000 3/day and 10,000 with snacks. On going diarrhoea. Once chopped is done, no more input from the surgeon n cohort. Attending OP but no general wellbeing post surgery done. Endocrinologist & GP was cranky coz no discharge summary was received from the hospital. Even his endocrinologist was unaware of the operation (isn't it shocking😱)

I am a Registered Nurse and being proactive with his appointments and diet. Recently had Dietician & nutritionist input. She gave us the list of what to eat & drinks (can give u a copy). We joined the NeuroEndocrine Australia (Victoria).