please some help here, end stage liver cancer.

[Jimmy777]

Dear BLT people,

I hope you are all doing reasonably well.

After my story 1.5 year ago about my misdiagnosed liver cirrhosis its kind of weird to say that I found out that my dad was diagnosed with liver cancer today. (he was never a drinker or fat or what so ever, he is quite old though, he is 81).

My dad got older and older but suddenly a lot worse from June last year. In oktober and november he took clearly another step back, ate way less, lost weight, and everything seemed to he had to do was going way more difficult then before. In December I realised it was going to be our last Christmas with my dad. From that Christmas day till now he got extremely much worse.

Lost again more weight, was not able to do anything anymore the last 3-4 weeks, and was sleeping more and more.

We never knew what he had because he didnt wanted to go to hospital, he just knew it was going downhill but we didnt know what he had. Until today. At home the GP took some blood a few days ago and some urine sample and an echo (some portable thing, didnt know it existed) was made in his hospitalbed in his home. Thats how we found out.

The last few days he went from sleeping from 14 hours a day to 20 hours. Has a huge amount of pain in his whole upper area (chest, ribcage) which of course probably is from that liver. He also now looks yellow. Today for the first day he didnt wanna eat anything except drinking tons of water. Also he is very confused and is saying a lot of things that doesnt make any sense.

I have a very simple question (he's not getting any treatment except pain relief pills and morfine). How long do you guys (from people who got experience with losing family to this horrible disease) in general we still have with him? The GP didnt wanna answer the question. Or was at least very vague.

It would be nice if somebody could give me a ball-park figure. It will not take a year I understand that. But is it days or weeks?

Please share some experiences if U wish.

I wish everybody the best as possible and I hope I can look forward to your replies.

[RugbyMama]

I am so so sorry to read your story.

Livers are fickle things, some will keep going for weeks, others not so much. You will find you Dad sleeps more and more. All the symptoms you describe are indicative of other things that go alongside liver disease like hepatic encephalopathy that causes the sleepiness and confusion.

See what they might be able to give him for the pain and to keep him calm and settled. Be kind to yourself, get plenty of rest and take a break if you need to - it's a truly awful time. Make sure you've got plenty of support around you and cherish eveey moment you have now with your dad. Tell stories, joke, laugh, cry. My husband read the football transfer news to my FIL as he was dying. He was asleep and heavily medicated but I honestly think it helped my husband process what was happening.

[Jimmy777 in reply to RugbyMama]

Thank you for responding RugbyMama. Yeah, I already thought it was hard to say. I do know the last 24 hours he slept litteraly the whole day. I cannot give him his medication anymore. We woke him up in the morning but the rest of the day he seemed passed out. It SEEMS to go so fast now, but maybe today brings us a different day. Maybe it´s good it would be matter of days. Im constantly in doubt. It would be better, or wouldnt it be. I think it would. Thanks again. The tell stories, joke, love, cry part is already behind us unfortionatly. Very hard to do this with this man. And now just simply too late. Thats sad. I will give him a big hug and say I love him if would be awake today....

[Buddythezhu]

I don’t know about your dad, my dad’s GP has moved him to end of life care from the hospital but he’s still at home. My dad now has so many cancers, he’s not being treated anymore but started liquid morphine. We haven’t been given a ‘timeline’. I would definitely ask his GP to refer him to hospisl palliative care, that’s what my dad’s gp did. Good luck, it’s such a difficult time.

[Jimmy777 in reply to Buddythezhu]

Thanks for the story and advice Buddy!

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Jimmy777

We are sorry to read this, if you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also have a Thinking Ahead booklet, which also covers end of life care in a separate section that can be looked at when you feel ready.

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[Jimmy777 in reply to BritishLiverTrust8]

That´s a very nice option indeed, thank you. However, I don´t live in the UK but in the Netherlands. Thanks never the less.

[Roy1955]

When my relative became as sick as your dad it was only days.

[Jimmy777 in reply to Roy1955]

Thank you Roy, very Usefull. I think it starts to look this way as well....

[Roy1955 in reply to Jimmy777]

You mentioned he has a hospital bed at home.Are nurses or hospice involved with his care?

[Jimmy777 in reply to Roy1955]

We hope for hospice, but he doesnt want shit... So thats gonna be hard...

[Roy1955 in reply to Jimmy777]

Ask for Hospice at home.The help is fantastic.

[Jimmy777]

Still in progress because we got the diagnose yesterday. Only around this time there is a nurse helping to wash him and dress him. thats it. But with the diagnose now we can get more help...So... yeah that would be extremely helpfull.

[Readlots]

Hi Jimmy, I lost my Dad to cancer which went to his liver and my Mum to an auto immune liver disease. The local hospice was brilliant with both of them, providing support at home. I can totally relate to the weird rambling with my Dad. Like you I wanted to know how long and the hospice told us ‘when they are getting worse each month they’ve got months, worse each week they’ve got weeks, worse each day it’s days etc’. It was true for both of them and it helped me to know. I hope this helps you - thinking of you - it’s such a difficult time x

[Jimmy777 in reply to Readlots]

this could be really true and if so, its done in a couple of day max. Monday he is planned to go to hospice after all but I think its 50 50 if we make that. I hope he dies as fast possible. For him and his family. Ive never experienced this in my life. Man, he is sooo bad ans looks so horrible. Its like a horror movie. Behaviour as wel. Thanks Readlots!

[RugbyMama]

Hi Jimmy

How is your Dad doing? I've been checking back in for an update. Hope you are doing OK - it's a tough time for everyone.

[Jimmy777 in reply to RugbyMama]

Worst day in my life. Horrible day. We cannot communicate anymore (he is very deaf and we cannot get his hearing aid in his ear). He doesnt understand nothing. This morning he was peeing every hour. Help him to stand, bucket under him, but every time pee everywhere. Worst thing, he got Morfine now (he had Tramadol) and became so restless. He needs to lie down, but came up everytime today. He has thousends black spots, full of wounds, wounds from sitting on his ass. He got a daiper instead of standing peeing, but daiper he didnt understood that he could pee in the diaper. At a certain moment he thought (I think) he thought we didnt allow him to pee. And the sound he makes (he doesnt hear himself). He is screaming and moaning sooooo loud. Horrible. Then finally I called house care. He got something to make him sleep (Haloperidol) and a catheter. I didnt hear him. He didnt make a sound when they put in the catheter (is this the right word). The Haloperidol seems to work, didnt hear him (besides sleeping) for 4 hours. Such a relief, lets hope it stays this way. Never, ever had such a day. Horrific. And finally scratching... He kept on scratching blood on the sheets...and not a little. pfff well enough details. I hope for him (but also for ourselves) things end soon.

[Roy1955 in reply to Jimmy777]

Sounds like he would benifit from being fitted with a syringe driver to administer end of life medication.

[Jimmy777 in reply to Roy1955]

thanks Roy...

[Skwbunny]

Take some deep breaths, watching a parent in pain is tough, all you can do is be present, talk to him, maybe play some music, and even if he is not able to communicate , you will be able to look back and know you did everything you could for him. I have been there and would not wish it on anyone. You sound like you are doing everything you can and should be proud of yourself. .

[Jimmy777]

thank you . thx a lot

[Aztec632]

So sorry to hear what your Dad and family are going through. My heart goes out to you.I experienced similar with my mother. I was told she had around 8 weeks from diagnosis.

She was very yellow and lasted 5 weeks. Mom was at home as she would have wanted to be. Also very yellow.

It's a very stressful and emotional time but soon your dad will find peace.

Take care, Sending you a big hug

[Jimmy777 in reply to Aztec632]

yeah, yesterday especially was very extreme. Sorry to hear about your mom. It would really surprise me if it would take weeks in our situation but we will see. Thanks Aztec.

[RugbyMama]

My father in law was receiving palliative at the end of his life. A syringe driver helped greatly but you do have to push for it. He was in hospital rather than at home but once the driver was in they could keep his medication going consistently and he just slept. It made the end very peaceful for him.

[Jimmy777 in reply to RugbyMama]

Thank you. Hé died 17.30 half an hour ago. Exactly...

[LeWabbit in reply to Jimmy777]

So sorry for your loss

[Jimmy777 in reply to LeWabbit]

Thanks

[PerpetuallySad in reply to Jimmy777]

Jimmy I am so sorry for your loss. I’m sending you so much love.

[Millie09 in reply to Jimmy777]

Hello Jimmy, I have been following your dad's journey since you posted on forum

I'm so very sorry to hear of the passing of your dad .

May he now RIP ,

please take care of yourself.

My thoughts and prayers

Linda

[Jimmy777 in reply to Millie09]

Thank you, this means a lot. Looking back now 24 hours after his death, I realise that the last 3 days before his death yesterday was really kind of traumatic. He fell on wednesday morning at 4.30 am and since that moment it went very fast, very bad.

We hardly could get him in sleeping mode. Well, a few hours maybe but then there was a few hours of hell again. The screaming, forcing to go out of bed, the look in his eyes (was not my dad anymore, more like some animal or something). The peeing and scratching like a maniac...The state of his body (I told this before) , it was really, truly shocking. He was bleeding all over the place because of the itching. His hands partly black (just died ???) around his eyes black. Open wounds on his ass because of lying in bed so long. His feet and ankles looked like balloons and his lungs full of fluid... The pain he must have felt despite the morfine... Pfff!

The nurses washed him saturday around noon and besides the screaming, we saw his (naked only with katheter and diaper on him) body. It was if a lunatic has cut him 100 times with a knife, It was so intense. When he was dead, it looked like his eyes popped out. This was not even remotely my dad... But of course the scary part is: it was him.

I will miss him. He was a very difficult man, but had some great personality traits. However though, we are all glad his pain is over. Thanks for all the love people... Really supportive. Now this horrible funeral and then we can get some rest...

Have a nice evening...

grtz Jimmy

[Millie09 in reply to Jimmy777]

I can relate to what you were witnessing in some way .I was My own father's FT carer 12 yrs ago ,he had lung cancer, which 3 months post surgery to remove his lung ( he was 77 yrs old ) his cancer had spread to the brain .

Towards the end we too witnessed things I will never get out of my mind . My dad that I knew and loved was gone ..yet at times when he was quiet due to medazolam sedation those beautiful sparkly mischievous eyes were still there .

I miss him today as much as I missed him since his passing..

You need to take each day as it comes, take strength in that your dad is not suffering any more .

Days and weeks will be rollercoaster for you and the family but you will get through it ,grief comes in many guises

Please take care Jimmy.

[Jimmy777]

Thank u so much.

[Readlots]

I’m so sorry Jimmy. It sounds awful - I wish the hospice had been involved sooner so that you both had more support. What you’ve described was certainly traumatic and you may need help processing it. Sending you a big hug.

[Jimmy777 in reply to Readlots]

Thanks, thanks a lot. Im gonna look aftershave funeral if i need mental support.

[Lperica10]

I was just going to respond to this and then I read the whole thing through. I am so sorry for your loss. Lost my dad the same way. Thinking of you.

[Jimmy777 in reply to Lperica10]

Thank you. It feels good to know there are People Who experienced the same thing...

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Jimmy777

We're so sad to read this, and very sorry for your loss

With best wishes from all at the British Liver Trust

[Jimmy777 in reply to BritishLiverTrust8]

Thank you I appreciatie that a lot. Thanks

[Lperica10 in reply to Jimmy777]

And I can totally relate with you. It’s like nothing I’ve ever experienced (end stage) it’s so awful - for everyone. Please take care.

[Jimmy777 in reply to Lperica10]

Thanks a lot and the best to u ..

[Roy1955]

Horrible for you but the one "good" thing about liver disease is the sufferer is usualy "out of it" towards the end and not really aware of what's happening.Ask the funeral home about support for yourselves and also a hospice will arrange ongoing family support.

Forget the Dr's, you don't want drugging.

Do what's needed now just a day at a time.

Roy

[Jimmy777 in reply to Roy1955]

Thank you

[Buddythezhu]

I have AIH a liver disease, my dad has multi myoloma cancer for about 20 years, he how has gone blind in one eye, tumour, big tumour behind his ear and advanced lung cancer, only found 2 weeks ago. All I will say is he’s no longer receiving cancer treatment, he’s been put on oral morphine and has been handed to the palliative care team at the hospital but he’s still at home, it’s extremely difficult. The doctors cannot give me a timeline, I’m dealing with it day by day, not easy at all. Sending love to your dad.

[Jimmy777]

Thank you Buddy. A horrible situation. I wish you strenght and the best possible to get through THIs...