Help with diet please

My husband was diagnosed with PC after obstructive jaundice mid Sept 22. He goes in for this 3rd Endoscopy tomorrow as they still can’t tell us whether it’s a primary pancreatic cancer or melanoma resurfaced from his knee 4 years ago. The treatment is different but we couldn’t have started chemo or immune therapy as after he had a stent to bypass the bile duct he caught every hospital infection going. He went from just under 13 stone 18 months ago to just under 8 stone when he left hospital in Oct, and lost all his bodily functions, mobility and appetite (just before this he had been at the gym 4-5 times a week and we were walking on beaches in Cornwall). 
I’ve been nursing and caring for him at home downstairs since mid Oct, and over the last 8 weeks he’s regained bowel and bladder control and we’ve managed to put 6lbs on in weight. And that is only having 1-2 weetabix for breakfast and 2-3 Scandi shakes a day enriched with full fat milk, organic vanilla ice cream, vegan protein powder (lowest sugar and flavour free) and life mix vitamin powder from our local health food shop. .  
I gave up trying to get solids down him after the hospital  infections as everything tasted like mud/sludge/metal and he was sick.  However after lots of trial and errors, it’s very boring (he only likes one flavour) - but I’ve found a formula that works at putting weight in and he can tolerate! He takes 6 creon with every shake and breakfast and 3 if half measures.  At the beginning/occasionally he had/has cravings for things he used to love but one forkful and he said it tasted horrible - nothing like he remembered and loved!  Even the toast is off the menu now! 

During this time we’ve also had to master his diabetics controls as we can go from hypos to hypers in one day. I couldn’t have done this without the amazing support of the specialist pancreatic cancer uk nurses hotline, our McMillan nurse and local doctor and surgery diabetic nurse.
he was mid-diagnosed with type 2 diabetes where as we now know it was type 3C - and that should have raised the red flags 18 months ago but this is little known amongst doctors and even diabetic nurses at the GP  

However, none of this was easy to start with and I had to chase and question everything and challenge things based on my research and the expert guidance I got from the pancreatic nurse hotline and the materials/forums online. The pancreatic nurses  pointed me in the right direction re discovering the right number if creon - increasing from the 1or 2 the doctors initially said to 6 per meal (2 at start of shake, 2 mid and 2 at the end). You can’t overdose on creon and it makes the world of difference to nutrient absorption and regular  bowel movements etc.

We had to add in rapid insulin pre meal times in addition to the daily slow release. The weight started going back on after this and he regained mobility and all bodily functions and can now shower independently. 
He has a permanent pain (dull ache) in his tummy and it grumbles and growls a lot after processing any food or drink.  The doctor did give us cocodamol but that can cause constipation so we prefer just to take 4 x 2 paracetamol a day unless the pain becomes more stabbing - but he’s learned to manage those attacks better my deep breathing.  

There’s loads more I could share about our experience over the last 4 months - so feel free to ask me anything - it truly has been a rollercoaster journey with new scary and terrifying twists and turns added along the way. I recently retired early and this is my new 24/7 job!

I would say don’t worry about even trying to do meals ‘like they used to be’ - just find the quickest and easiest way to get the key nutrients in.

I think my darkest moments have been battling the infections and over the holiday period not being about to get through quickly to the doctors or 111 and my support lines have been closed.  However, we made it though and I have loads more experience and tools/coping  strategies and options to help me manage after the sickness bouts which cause chaos with the bloods and regular stats (BP, glucose levels, temp etc) 

I keep a daily journal of all his stats and food which provides a useful and accurate record I share with his doctors/nurses to help me look after him the best I can  

My husband only now drinks water (ribena if we’re facing a hypo in the middle of the night) but I’ve stopped stressing  over this.
At the beginning I tried everything to build back his appetite after the horrendous hospital infections, enriching his favourite food with calories and little and often portions etc   but got very upset with the wastage and feeling he wasn’t trying or liking my cooking anymore.
Now I accept we probably won’t be able to eat out or like we used to at home around the table  (just don’t take it personally!) - but the positive is what we’re doing is a little weird but is working and building his strength back and I can juggle/manage  with the diabetes too. 
We are hoping when we see the oncologist at the end of Jan, we get a final diagnosis (all we know is there is a 4.3 cm mass at the head of the pancreas that’s grown from 4cm in Sept) and he will now be well enough to start chemo or immune therapy or whatever treatment plan they thing is best. We know they can’t operate - ideally they want to shrink it/slow the growth initially.

I’m sure I will have lots of questions as we enter the next stages of this journey I know none of would want to ever be on. And it’s reassuring to see common threads across others experience of this particular nightmare. 

It shoud say 9 stone - he’s now 9 stone 5lbs 

My husband had fortisips in hospital and they made him sick. However, we discovered powdered shakes and soups. Tried them all - and have 1 success - chocolate scandishake enriched with full fat milk, organic vanilla ice cream, vegan protein shake (lowest sugar and flavourless) and vita life vitamin & mineral mix all whizzed up in a blender. Since hitting in this, he’s put in 5lbs!  My small miracle over the last few weeks! 

It is literally day by day - and some days hour by hour! 
And you. Any force them to eat or drink - joy is real trial and error - testing and learning. What works / doesn’t! 

Thank you for your message.

 At the moment we are just trying to take each day as it comes. The lack of appetite is really the worse thing as you feel you need fuel to function and just not being able to put anything in his mouth is awful. Sometimes he can’t even explain why. Is it fear of being sick? Not being able to swallow? I don’t think he knows himself. I’ve bought him shakes to try but he just seems frightened to try anything. 
my husband’s weight is now 9st (dressed). 
the initial treatment that was offered was limited as he had a stem cell transplant in 2010 so they had to be sure that anything they offered didn’t effect that. It has been a nightmare to be honest. The days of going to work and being a normal couple seem like such a long time ago. I can’t imagine a time where I will feel safe leaving him to go to work.

i am really grateful for people reaching out to me and sharing their experiences, I am going to try different things you suggested.

 Thank you

Hi Knittynanny 

I am sorry to hear of your husbands diagnosis. 
I would suggest that you don’t worry too much about mealtimes and let him eat when he likes rather than it become stressful when you know it’s approaching lunch or dinner time and you have to start encouraging him to have something. Leaving the snacks around is a great idea. Try to get as many high calorie foods into each mouthful as possible. So adding cream, cheese, honey, peanut butter, chocolate, avavado, nuts, icecream etc to what he is managing. It’s so hard watching your loved one not eat and have no appetite. It’s kind of the measuring stick to how well they are. Just take each day at a time. X 

I’m trying not to stress about meals. It’s really difficult now I have a few ideas to put in to action over the next few weeks. Fingers crossed I can sneak a few calories into him

 thank you for your suggestions

 celia