Trying to find ways to cope

[Patches]

In October last year my husband was diagnosed with stage 4 pancreatic cancer that has spread to his liver.  Due to bronchitis, cellulitis and now Ascites plus fluid retention in his legs my husband is in hospital for fifth time in that period.  He was having chemo but it wasn’t working for him and was actually destroying his quality of life.  He was home for 3 weeks this last time following being in oncology ward for 10 days.  I knew his muscles had been effected as part of the last time in hospital but I didn’t realise how badly until a week ago when senior oncology dr told us he has now lost 2 thirds muscle mass and was carrying massive amount of fluid in his legs.  Following day he started showing signs of Ascites.  By Wednesday afternoon he couldn’t stand without support.  

He he was placed on Lasix on Wednesday evening and since then he has lost over 10kg, nurses tell me most of it is fluid.  Whilst visiting him today he told me his legs are getting weaker.  He needs support of 2 nurses to be able to stand up from the chair.  He now can only shuffle when moving from chair to bed, his chair is almost right beside his bed.  Today whilst the nurses were holding under the arms he grabbed my arm as felt he was going to fall.  

He he is still mentally ok most of the time but appears his muscles, especially in his legs, are failing.  Three days ago palliative care nurses offered us hospital bed at home with support of a nurse for majority of the day to enable him to come home ...... watching him tonight I am so scared he will no longer be able to come home.  He has been offered bed in palliative care unit at centre in our town to which he says he won’t go and if he has to go he will starve himself to death.

knowing I am probably going to lose him soon is upsetting me heaps but knowing that he will most likely be bedridden for some period of time before he finally passes away in a palliative care centre that he is terrified to go to is causing me so much emotional agony.  Part of me wants to have him home, even if only for small number of days, which is want he also wants, but part of me knows  there is no capacity for him to even get into my home due to there being 3 steps at front and back doors.  Feels like my heRt is being torn apart each time I think of him or visit him.  Have cried so much it feels like I have no tears left at times

[iloveyoudearly7]

Hi Patches,

I am sorry to hear about your journey, it sounds like it's filled with rough decisions. It's clear to see that you want the best for him while also keeping inline with his goals. I provided home care to my mother while she was...ill but then again I did have help from my sisters. Sometimes palliative care is the best option but it all depends on who can assist you during the nights, who can physically help you as well. It's alot to consider as you will be also responsible for providing medication as well such as pain killers and whatever else. 

I had to make these decisions, I am not trying to scare you away from home care but just letting you know, what you might encounter and what to expect as well. You can only do what's best for them and sometimes sadly it doesn't always work with their desires due too many reasons.

 But you can visit them everyday, knowing they have excellent nurses looking after them 24/7 and you can even make the room more homey too, with home blankets or items.

This is not an easy subject to touch but you are clearly doing your best and that is all anyone can ask from someone.

Please tell me, how is everything going?

[Kase]

Hi Patches

what an awful road we are travelling down. My father also has pancreatic cancer. He was diagnosed in October 2019 and after 6 rounds of aggressive chemo we were told it has spread through to his whole body. We are now counting down the days if not hours of life he has left. We too wanted him home with my mum right or wrong, however after much thought we made the decision to place him in hospital On palliative care. Thankfully we did as how he has deteriorated so rapidly there is no way in the world mum would cope at home with him. It’s absolutely brutal. We are lucky enough to be in an outback country town and our little hospital has been brilliant with us all going to be with him.

You also most importantly need to take care of yourself as well. 
whatever you choose to do is your decision Neither is right or wrong and I wish you all the love in the world while we battle this horribly cruel journey.

cheers

[mangoman]

My father was also diagnosed in October with Stage IV Pancreatic Cancer. We tried to stay hopeful but we knew it would be very hard. The first line of chemo drugs didnt work and it spread to his liver. The fluid build-up had just started and he was having difficulty with breathing. He passed away this week, at home. Take care of yourself and your father for whatever time he has left.