General care questions

Hi Scotis

i am sorrybto hear of your father’s illness. Pancreatic cancer is not pleasant at any time and more trying in the current circumstances. I have read your profile. I can’t really comment on medical stuff as I don’t know medicine but I can speak a bit about my husband’s experience. 

Not wanting to eat is very common in PC and the more you try to get the patient to eat the more stressful it becomes for all. There are high calorie drinks such as ensure that might help. Needing Friends a contributor on here has experience of this so I’ll try to get her to come on and comment.

You ask about building him up for chemo. For chemo you need to be pretty fit and not in bed most of the time so in trying to get your father fitter by getting nutrition in him you might just distress him.

You are also wondering if he might be best in hospital or hospice. Perhaps ask him how he feels about this. My husband died in a hospice and it was a very caring atmosphere.

i think they are still working so you might find it helpful to call the nurses on the Pancreatic Cancer U.K. helpline.

You are clearly caring very well for your father.

Squeaky 

Hi Squeaky,

Many thanks for your quick reply and for sharing your husband's experience. We have the calorie drinks but they are also a struggle for him. I'll try the helpline.

Best wishes,

Adam

Hi there, I lost my partner to pancreatic cancer on Christmas eve. He had surgery and initially recovered well, his appetite almost back to normal. However it soon decreased and he barely ate anything for the last 6 months. We tried everything, went to see dieticians, had the supplements but he  just couldn't. I wish they had told me sooner that this was just part of the disease, it would have saved so much angst. I realise hope is very important and everyone is different, but this is how it was for us. Ken was fortunate in the sense that he didn't have nausea or a great deal of pain that he would admit to, but he just couldn't /wouldn't eat. The palliative care nurse likened it to how we feel when we have the flu, the body is trying so hard to fight and survive, it hasn't the time or energy to  eat or digest food. I think you are doing a great job and I agree with everything Squeaky says in her post. The palliative care team were great, and the district nurses fantastic. My only gripe  was I felt I never had a frank discussion about his disease, the progression, what to expect, Ken didn't want to know, but I did, I wanted to know what was expected of me so that I could help. They only admitted he was dying a couple of days before. A long winded post, sorry, I hope something in it has helped a little, try and get a support team in place if possible at this  difficult time , at least get as much information as you can,. I used this forum and squeaky was a great help, I also phoned macmillan, who were unbelievably supportive and informative. I wish you well, please let us know how you get on x

Thank you so much for writing to me Needing Friends. That was very helpful to read. I will try to speak with a nurse on Monday. 

All the best

Hi there. This is just to let you know that I have updated my profile now that my Dad has sadly died. I learned a lot from this and I hope my experience can be useful to others.

Hi Scotis, so sorry to hear your news. Your experience will undoubtedly help many. I'm thinking of you x

Hi Scotis ..i am so very sorry to read of your father's passing...my condolences to you and your family...i have read your profile ....thank you for all the details they have been very helpful to me in my current situation....my husband has stage 4 pancreatic cancer...symptoms started out of the blue at the end of October last year....iching, dark urine, light stools and then jaundice all occurred within a week......no symptoms other than a bit of indigestion a couple of times a few months before...and back pain but this was common for him....in December he was admitted to hospital and after numerous attempts eventually a stent was fitted..the jaundice delayed any chemo and by January we were told it was stage 4 as spread to the lungs...my husband was given 3-6 months...he declined chemo preferring quality of life over quantity...not sure if that was the right decision....reading your detailed profile has given me a bit of an insight into what to expect however i used to be a district nurse so ive seen some things...at present my husband has deteriorated quite a bit...he refuses to eat ..which I find heartbreaking....he can slowly get up and down the stairs but once of the chair he sleeps all day but cant sleep at night.....his ankles have swollen so i massage his legs, ...he has also started coughing alot more ..maybe the build up of mucus you mentioned....also over the past 2 days his voice has weakened and he is a bit disorientated but not much ...i put this down to starting MST 10 mg slow release and Oromorph in between...i know the end is near  ...how long i don't know but i don't want him to suffer anymore ...the only thing i can say is that i noticed that he had been depressed for a few years before this diagnosis..ive heard that depression can precede this illness....i pray for everyone who is goung through this horrible disease or who has list a loved one ...my husband is 59 ...his 60th in a couple of months ...its so sad ..take care x

Hi Carli04,

Gosh thats very young, I'm sorry to hear this, it sounds horribly familiar. It sounds like his time is very limited. Don't forget even if he is unresponsive he could very well hear what you are saying. I would just try to get as many drugs into him as the medics are allowed to administer, this will make him less responsive but much more comfortable and switch to injectables asap. My Dad never had depression but he did have digestion issues throughout his life, acid stomach etc. Nothing too extreme but maybe it made a difference. I think this disease can also just be random unfortunately. It is difficult to say but I think not doing chemo is probably best for most people, especially stage 4. I'm glad my Dad didn't even have a chance to start as he would have tried. Definitely put some compression socks on him, they made a big difference to my Dad as the swelling can be painful. 

Take care x

Hello Scotia, 

Thank you for your detailed update on your profile. It's so very strange as this was the first post I clicked on after seeking information re lack of eating and I can say that alot of what you have written is what is happening to my dad right now. 

He's 64 with pancreatic cancer which has spread to his liver, lungs and bowel with mets and ascites in his abdomen. The last 4 or 5 days we have seen a massive decline. No energy, cold, not eating, sleeping during the day but not at night but also hiccups! We've had our first palliative care nurse appointment today and they have put him on the slow relief morphine with oral morphine in-between, anti sickness meds to help with the hiccups and laxatives as he hasn't been to the toilet for over a week now. He's eating very little, nothing at all yesterday and a rice pudding today. He is still able to get up and walk about himself but can see he is getting weaker and weaker. I wonder how long he will be able to do that for. 

The palliative care nurse said today that the way he is eating is not sustainable and it's only just dawned on that's what she said. This was said when I asked whether he could get better or whether this is the start of the end. I came here looking for what sustainable means or looks like. How long people usually have between stopping eating/eating very little to the end. 

Thank you for sharing your experience and I'm so sorry you have been through this with such little time to come to terms with it. Of course, it sounds like it's been made even harder with the virus also. Which is again what I am afraid of. His care being delayed. 

Best wishes. 

Hi Savona16,

It sounds like you are going through exactly the same trauma as I did. I don’t think your Dad should eat unless he really wants to. Any food he swallows won’t be absorbed properly due to the disease and may cause nausea or discomfort. Funnily enough I also gave my Dad rice pudding. I also made a lot of smoothies for him. With my Dad the laxatives had no effect and were probably unnecessary because of the small volume of food intake. A doctor can examine your Dad's abdomen to see if he may get discomfort due to constipation. My Dad stopped eating anything about a week from the end. Within that week his drinking lessened also. If your Dad struggles swallowing the pills or gets any breakthrough pain I would request that he gets a Fentanyl patch instead. Your Dad's condition is probably going to change day by day. If he is still communicative make the most of that now. I wish you and your Dad all the best and as minimal pain as possible.