This forum has been very helpful finding out about what is happening and what could happen and real life truth of it all.
I was told liver cancer can affect you very quickly yet here we are 3 years down the line so I thought it was going slowly.
Also extremely little growth no spread.
Everything was stable
Then unbearable pain came just like that,
No warning
Just watching television one minute
Hospice the next.
My family member was supposed to come home.
From current situation I am not yet sure that is possible right now.
The extreme rapidness without warning after very long period of stability is very alarming, concerning and I wish someone would have told me to prepare incase this happened.
I was told things can happen fast but knew nothing more and there was nothing to suggest this could happen.
Watching tv one minute
Hospice the next
Pumped full of pain medications and can barely wake move or talk.
Written by
eekk
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37 Replies
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Oh, I'm so so sorry. You are in my thoughts and prayers. Thinking of you as always Lynne xxxx
Life can be so very cruel , I suffered a very similar incident last year with my aunt and I can sympathize with what you must be thinking right now, rest in the knowledge that your family member is being well cared for .
My thoughts and prayers to you and the family at this difficult time
Linda x
Hi Eekk
I'm also so sorry for your latest sad turn and my prayers also go out to you along with a squeeze hug for comfort.
The only thing you can do right now is be there to help your family member go through this very sad difficult time.
A very close friend of mine went through the exact same..one minute he was sitting eating fried chicken and all having a lovely time the next day he was also taken to a hospital then moved to a hospice!
Unfortunately we can never predict when cancer can take a sudden bad turn until the last minute for some!
God bless your family member and so sorry to hear your sad news.X
I'm sorry eekk how this has just happened so suddenly.
Each person and illness is so different that it must be very difficult and nigh impossible to give an exact prognosis
I had Liver cancer more than 4 years before my transplant and it held stable with TACE and chemotherapy and it was the cirrhosis that took me to transplant and not the HCC in the end.
I'm sure that in the hospice that they will be keeping him comfortable and free from pain so that your time with him is peaceful and not stressful.
Hello eekk. As Alf said, your family member will be kept comfortable and pain free. Hospice staff are wonderful. I wish you all much strength and love at this sad time. xx
I am incredibly sorry to hear about this awful turn of events. You must be so shocked and sad. What really struck me is the anxiety you are naturally feeling because your family member is still in pain. I am in the US, and don’t know about hospice policies in the U.K. However, do you think it would be worthwhile to have a conversation with the Hospice staff about his pain? “Palliative” literally means “to relieve pain.” And, hospice care usually only occurs when it is clear the person is not going to survive the illness. It seems the staff might want to be more aggressive with the pain medication, even if that slows the heart and lungs of your family member? All that maters now is that both of you can experience some peace. I really wish that for you. ♥️
I sincerely apologize for my original comment. I misunderstood and thought that all options were over and that no improvement was possible. Since you think he might survive this current flare-up, I can understand that you would not want to do anything adverse.
However, may I gently suggest that you clarify his status/condition/prognosis with the Hospice staff? If they believe he might get better and come home, then it seems you are on the right path. If the end is certain, though, and it is simply a matter of timing, then the peace of him being pain-free might be worthy of your consideration.
I do understand your angst and that you feel you cannot stand it. But you can. Somehow you will find the strength!
I hope there is someone who might be with you during this difficult time? I hate to think of you alone there, trying to navigate this on your own.
Oh Dear eekk, I am so sorry to hear of your sad news. I can only repeat what others have said, and send you my thoughts and prayers at this tragic time.
Such a shock for both of you, really sorry you are both going through this and hope you get some greater clarity from the medical staff very very soon. Big hugs, know I would be in bits if one of my family. Make sure to look after yourself too. x
I don't really know if this is usual in this case.
I had a catheter immediately after transplant for a week or so. I imagine the reason for mine would be to take some stress of the body and also when you are on a lot of meds and painkillers you wouldn't always be aware that you want to go.
It could be for similar reasons that they are talking about a catheter for him.
It is now clear hospice just administer pain relief.
Not really interested in the patient or family just pump the patient full of drugs/chemicals so they cannot speak and lie quietly sleeping.
They do not bother seeking scans or help or anything that can help relieve just one way road.Pump full of drugs until they can no longer wake up.
I thought the place was nice until I saw its only purpose.
There may be some if only slight ways to have loved ones live longer but that requires them to have help in ways of scans and treatment rather than just be injected or medicated full of drugs to send you to sleep.
It is now clear if I want answers or to see the truth of what is going on i will have to pay for private consultations and scans.
Hospice from what i am witnessing is just a place where they shut the patient up with massive doses of meds to knock them out until they cant wake up again.
Some things can be helped and can make people live longer but hospice has no machines and they only have a one track system.
Medicate massively to sleep.
Not interested in helping the patient live longer.
I feel for you being so stressed out and not happy with his treatment.
A hospice is a place for palliative care, to make the patient more comfortable when it is thought that there is nothing more that can be done in the way of operations and procedures that will have an outcome in the patients favour.
If you are not happy and you think that he is in the wrong place the best thing to do would be to have a talk with the doctor that had him admitted to the hospice.
I hope that you are able to do this and to be able to get a clearer understanding of his treatment.
It was me that requested he be put there as the hospital were of no use whatsoever leaving people in corridors over ten hours at a time then forgetting to prescribe meds then sending people home only to start the cycle again.
So I put him there with the intention we could figure out where the pain was coming from 100 percent instead of guessing as been stable up to this point ish.
Then later realised they do not do scans or help with any treatment as such just give you very strong opiods so you cannot think straight or barely stay awake.
I can see it's a difficult situation and that the NHS are at breaking point with admittances especially in the winter, more of us than they can comfortably deal with in the present lack of funding situations.
The hospital is the only place to be though to get the scans and tests etc that you require.
The only other way is as you said to get them done privately but then he has to be comfortable enough and on the proper meds to maintain this to come home .
The nhs at this stage do not want to bother scanning .i guess they assume its a waste of their time and so just assume they know where the pain is coming from.
Perhaps it is coming from the place they assume but I think it is better to know for certain as if it is something seperate that can be helped in some way that is best for the patient rather than nhs non existant budget
They said cancer causes pain so that is what they believe it to be .As it is not treatble they do not want to spend money on a scan to show if it is cancer causing the pain and nothing they can do they just wasted their money i guess
Dear eekk - I’m sorry for the way you are feeling at the moment and the reasons for this. It’s hard for us to know where to begin to offer comfort in such difficult times. It is torture to see someone we love suffering especially when doctors have told us there’s nothing can be done to save them any more. It is agonising to know this ends one way only, very hard to endure. At these times it can be easy to shut out the only comfort that works, the love that people will surround you with if you allow it. I wonder if you may have a barrier up just now to feeling this comfort that many, including on here, want you to take. Focus on the one you love and let go of any resentment that may be getting in your way. Your loved one can hear you even when they can’t move or speak. Make this a time to be together in love inspite of every
difficulty and tell a nurse or doctor how you are feeling, how unprepared you feel for events to turn like this. Then they can help you to bear this. I’m sending love to you both as I know everyone here does xx
There was talk of catheter but they never ended up doing it.they tested for urine inf a week ago came back negative i have not heard them mention it again since.
This fever thing is weird.it has happened 3 times just random then goes.
They are only giving pain relief there so discharging tomorrow.
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PALLIATIVE CARE
ultrasound 
Salt / Sugar / diet and food recommendations and a bit of background.
Forgot how reliving it was to get a diagnosis 
Liver pain. How long to repair? Am I doing it right? Feeling frustrated and on my own with it.
