Liver cancer

A place for people affected by liver cancer to support one another, ask questions, and share their experiences.

Advanced liver cancer

fiveballs
Posted by

hi everyone, just looking for some advice and guidance. 

After a sudden decline in health my 86 year old dad has been diagnosed with advanced liver cancer with metastasies of the right lung and spine. He has been fastracked for continuing healthcare at home, and very frustrated that he has already spent 10 days without his wife, waiting to go home. Nobody at the Hospital can tell us when his discharge may happen , or what his prognosis/ time he has left. 

I seem to be watching him deteriorate by the day, its heartbreaking. frustrating, and i am worried that he may not get to go home at this rate. 

If he had savings, this would have speeded everything up, but as he needs total care now, and the hospital consider him unsafe to go home without care in place ( falls), its a waiting game. 

All of this In two weeks, its been a shock! getting answers is a nightmare, exhausted, living in a nightmare right now, torn between just taking him home to fulfil his wishes, not knowing how long he has, and waiting for how ever long it takes to get everything set up by the NHS. 

I have rambled on, sorry, so tired now. Mum needs all care at home, so looking after them both is becoming stressful. 

latchbrook
Posted by

Hi  and welcome to the online community

I'm very sorry to hear about your dad's recent diagnosis and the frustration you all feel with him not being able to go home yet.

I don't have the personal experience to help you with this but I noticed that your post had gone unanswered. Could I suggest that you join and re-post this in the carers group which is full of knowledgeable people. I'm sure someone there would be able to suggest ways that you could speed the process up. To join this group just click on the link I've created and then choose 'join this group' on the page that opens. 

You say that getting answers is a nightmare so it might be an idea to speak to the Patient Advice and Liaison Service (PALS) at the hospital where your dad is being treated. They can help with many things including health related questions or problems you're having with arranging for your dad to come home.

You may find this information on organising help before someone goes home helpful as it gives you an idea of what you might need to do and who can help you with that.

It is also important as your parent's carer to make sure you look after yourself properly and you will see that there are various things you can do to try and take some of the stress out of your life.

Wishing you and your dad all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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fiveballs
Posted by

my father died this afternoon, ten days after his cancer diagnosis, it was cruel  and harsh for us all. 

its so hard to take it in. awarded community care at home, but nobody could provide the care for at least 3 weeks. 

he was totally let down by the very people who awarded him the fast track care he needed. 

he was obviously dying, wanted to go home desperately to be with his wife of 65 years. 

so, we took him home. 

We couldnt get analgesia without ringing community  nurses, and waiting for them to appear. 

I contacted macmillan who were amazing, came and assessed dad, and said they would offer him a bed. 

Not what he wanted: but they gave him exceptional care 24/7, and he died in peace. 

i cannot fault his care by macmillan, but very upset that the NHS could not provide his care for him to go home, although awarding him full funding. 

Something has the change, we have amazing nurses working extremely hard to cope with demand, burning themselves out, providing excellent care, but just cant meet the demands of the service, working long hours for minimal pay. 

So very sad that Dad couldnt get the home care that he wanted, and he knew it, 

latchbrook
Posted by

Please accept my sincere condolences on the death of your father. It must have been a great shock for the whole family so soon after his diagnosis. 

I'm glad to hear of the exceptional care he received over the last few days and, even though your dad couldn't be at home, I'm sure that he would have taken great comfort from being surrounded by his family. 

Sending a gentle ((hug)) 

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

hrimalf
Posted by

Sorry to hear your Dad died. I totally agree about the shortfalls in the NHS!