Incurable Stomach Cancer with non Functioning Bowel - trying to get my head arounnd my Dads diagnosis and what is to come

Hi 

I'm sorry to see that after directing you to this group for help and support you've not had any responses to your post yet. By replying to you it will 'bump' your post back to the top of the page where it'll hopefully be seen by someone who has first hand experience.

I've had a look around the Macmillan site and found this information for you which will hopefully answer your question about what to expect at the end of life. It also gives information on where to get support.

Hopefully you've had chance to talk to the palliative care team this week and they've told you what you need to put in place to enable your dad to go home. If not, this information tells you about being cared for at home and who can help.

x

Hey Furbies,

Firstly, my family's thoughts and prayers and with you, your Dad and your family.

In the same way that every persons (patient or carer) cancer journey is absolutely unique, so is their transition from life to death.

My late wife, Margaret, was admitted to hospital in late June 2019 after 7 years of cancer. Her admission was due to a severe infection and she suffered a mild heart attack shortly after admission. The heart attack seems to have been the trigger that started her end game.

She struggled to recover from the heart attack and the doctors made the decision to transfer her to a specialist palliative unit. She was admitted 1 July and, although she was comfortable, was obviously going downhill. Margs palliative doctor (Dr. Sally Greenaway - who was also her pain management specialist) told our 2 sons and I that this was, indeed, the beginning of the end and their entire focus was on keeping Marg comfortable and peaceful.

We naturally had 40 bazillion questions and Sally and her team patiently went through everything with us. One of our first questions was "When?". They said that there is no hard and fast rule and that, although there are definite signs that someone is about to enter what they termed "a state of imminent demise", how and when they arrive at that point is unique.

Sally said, based on Margs history and the current medical complications, that Marg would probably not last more than a day or two.

In death, as in life - no-one tells my wife what to do.

Marg hung on for 23 days. Although she was pain free and comfortable, the waiting took its toll on our sons.

Although Marg was drifting in and out of consciousness, the one time we all stepped outside for a break was, of course, the one time she regained consciousness long enough to realize she was alone and became a little frantic. From this point onwards, we made sure there was someone at her bedside at all times so she wouldn't wake up alone.

We were talking to one of the palliative nurses, asking what to expect. He told us that sometimes, patients will hold on long enough that everyone they wanted to see had been in (my Dad did this - he hung on until my younger brother arrived from interstate before he let go of life), whereas others wait until there is no-one with them to let go. This was the route that Marg chose.

After 23 days, both of our sons were having a bit of a meltdown. I took them outside to the gardens to do a bit of unwinding.After a few minutes, our eldest son realized he had left his phone in Margs room and went back to grab it in case his wife called. Those few minutes of solitude was when Marg decided that she had had enough and let go.

Watching our sons say their last goodbyes was both heart breaking and uplifting at the same time. While we were waiting for the hospital to go through their process (which was handled very respectfully and lovingly) and all of Margs muscles relaxed, all of her wrinkles, laugh lines and worry lines simply faded away. She looked like she was 20 years old and stunningly beautiful. 

In those 23 days, Marg was probably conscious and lucid about 5% of the time. The other 95% of the time, morphine and the rest of her pain cocktail kept her blissfully and peacefully comfortable.

I truly wish that I could tell you that A, B and then C will happen, but I can't. Each and every journey is unique and that is true right to the end. The best advice we received was to talk to them, as hearing is the last sense to fail.

The person you love is still in there - talk to them. When you can no longer talk to them, they are still with you.

Peace,
Ewen :-)

Thank you Ewen.   I am so sorry for your loss and grateful for you taking the time to respond to my post.


It has now been 42 days since Dads TPN food was removed and we got him home. He hasnt eaten since, and is on 40mg of morphine by pump a day and extra injection at night.  

For the first few weeks most of the pain issues were down to him having been sat for so long in hospital that he couldnt find sitting or lying comfortable.  Hooked upto a TPN bag, fluids and urine bag post op in his last week there really did mean even though he was "fit" and would have been active if he could have been, he couldnt move anywhere at all :(

When we got him home they had to start him on morphine not because of the bowel, stomach and liver cancer but because he was in pain around his bottom area (no visible sores) or back. We purchased a recliner that helped a little, but the damage from sitting isolated in the wards as they do for patients under all these covid safety measures meant he had no physio, nothing to keep his mind occupied (not TV, radio for quite a few weeks and no views outside) so sat and drifted from boredom and shock of the news.

I knew this was going to be hard, but none of us had realised how long it would go on (not the Hospice either) for and how stressful this would continue to be for Dad.  We have been fortunate as diganosis was very short time (less than 6 months) he was able to be considered for emergency funding and this has helped fund carer attendence during the day and over night.

Dad is now at the stage where he is asleep more than not but when he awakens he is so uncomfortable, and his throat and mouth are so dry (despite Mum trying to keep lips and mouth moistened while he sleeps - we have tried the sprays, icecream, icepops, pineapple) he broke down in tears the other night saying he had had enough, as he found he couldnt swallow at all and that really scared him.   He still has an NG tube in place as his bowels stopped working whe he was in hospital so this has added to his sore throat and need to sleep open mouthed :(   

Sadly I suspect overhearing yett another District Nurse earlier in the day telling my 80+ year old mother that she would have to go and pick up the morphine which had not arrived (Mum cant drive, has dry eye macular degeneration, is diabetic and unstable on her feet!!), and the heated discussion that ensued for the second time in the week has not helped.   We have been so let down by local pharmacies in getting the vital medications he needs delivered.   I have had to return home so cannot be with my parents to support daily, but even when I was there was a complete shambles in getting the quantities of morphine ordered, delivered or even prescriptions sent through to the pharmacy.   One pharmacy treated me like a druggy trying to get drugs that we were not entitled to because the doctors surgery had not sent through the prescription they should have that morning !     

His brain is still fully alert so he really does know what is going on.   They tried sedatives a few weeks ago but Midazolam made him aggressive, the other drug knocked him out too much, and two weeks ago he did not want to be so alseep.   But now he and my Mum have had to plead with the District Nurses to help him, as he is getting more agitated.   They turn up for just 20minutes and often he is asleep and looks peacefull, but they do not see him when he wakens and cant get even sips of water down his throat and the distess that causes,  First District Nurse refused to help, or even call the hospice for their advice.  Yesterday the nurses did give him some sedative effecting drug, but it wasnt of any strength and a few hours later he was awake in more distress over not being able to swallow liquids, so much that he was swearing and cursing at my mum - something neither of them should be experiencing.  This has made Mum blame the sedative and so they are stuck just relying on morphine again.   Dad just wanted to go to sleep and not wake up from what is going on.

All of us just want the best for Dad, a gentle stress free, pain free release, but this is not what is happening