Frightening words! I heard them from my doctor last month. Anyone else dealing with the thought of dying, or rather not the thought but the reality of dying?
Terminal diagnosis: Frightening words! I... - British Liver Trust
Terminal diagnosis
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mousehold
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Almost, my local consultant never actually said those words but made it very clear that although not all avenues were closed survival for more than a few months were doubtful. After transplant when I went back to the local hospital he actually said he wasn't expecting to see me again.
It was a terrifying time and I probably had a month to six weeks before I got on the transplant list and thought I had a chance.
So although not exactly, I can definitely sympathise. What it did to me mentally is hard to explain. Because it was intense, the lack of sleep and constant thinking about everything from how I'd lived my life, the after life, my own spirituality and faith, and how it would end was something I experienced.
How are you coping yourself?
I'm not sure how I'm coping really, I went through the transplant and all sorts just to find I have secondaries, I think I'm just so fed up with all the illness and stress being dead might be an attractive peaceful alternative!
After I'd mulled it all over a million times, I surprised myself and found I wasn't scared of death. But I was terrified of leaving two young children fatherless.
That was all that really scared me, leaving people behind! I surprised myself at that realisation. I was quite happy to think about my own death. I started looking at it as just the way of things. I'm pretty keen on physics and it was comforting to me to know that at an atomic level I've been around since the start of the universe and will continue to do so until the end. I'm more sure of that than I am about a god and heaven. And at a molecular level I'm made of star stuff. We are after all "children of the stars".
"We are a way for the universe to know itself. Some part of our being knows this is where we came from. We long to return. And we can, because the cosmos is also within us. We're made of star stuff," - Carl Sagan
Thank you for writing this openly. I live like this, I believe it. I am doing ok facing my hard realities. I feel very strong. I know now how much I love and admire my own self. If its my ending and it looks like it is b/c I am in liver failure, I have liver cancer, I refused transplant so its just Pallative Care now. I take no meds. I am 64. I only wish to go out living well. 43 years of hep c with treatments and bleed out is a long time to live and I've lived well. In life, we do not get everything we want. Accepting this situation I live in has made me a better person, isn't that all we really need, to be as good of a person as we are able to. We all help each other.
I agree, there was definitely an enlightening of sorts when I faced my own death.
💔💓🌹.I'm so sorry to hear your prognosis but you are obviously a strong person and have made your peace with the world.
Have you been transplanted?
Yes catfish. Just over a year ago. I'm doing really well now. I'm no longer in any danger whatsoever.
what state do you live in and what is your age if its okay to ask, I understand if you do not wish to say also. I am in Hawaii, there are few transplants done here not sure why, 10 a year or something like that. I am happy you are in no danger, sounds like your transplant and liver were just right for you, thats just super great to hear. So happy for you. I am about to cycle the ocean highway this morning after having to rest all day for a couple of days, my liver has rested and its holding just enough energy to cycle. Aloha
Hope you enjoyed your cycling. I do a bit of cycling myself, I've got a road and mountain bike. And I know that 25 miles is good ride.
I'm in the UK, and my transplant was carried out at Kings College London. In The UK we have National Health System (NHS) that ensures everybody gets the medical treatment they need. It saved my life. I understand there are about 700 liver transplants in the UK every year. I know there can't be a direct comparison to the State of Hawaii. I'm 44 years old.
Perfectly put. That's it. Also it is inevitable. Most people think it's not the right time for them but strangely I feel it might be time for me to go. X
Yes I understand, that feeling has settled into my being also, so I just love life now one day at a time, sometimes moments at a time.
Dear Mousehold - I'm not sure what to say except that I am going through grief from the death of my husband.
Did you ask about the prognosis? I am curious to know if you asked or whether he/she bluntly told you? Our consultant never said and it was only after I asked the specialist nurse and she asked the consultant that she came back with an answer.
Thing was I kept it hidden from my husband and in some ways I feel I may have cheated him and myself from coming to terms with impending death but I never had the courage.... looking back I feel guilt and regret that I should have said " this" and if only I had given him the chance to say "that" and the list goes on....
I sincerely hope your consultant is wrong but if it's true then - well - I think the most important thing is to tie up any loose ends so to speak - kiss and hug those you love and tell them how much you love them and how meaningful your life has been. Get loving family photographs done - that will be their comfort..... concentrate on all your happy times and make the most of every day just like Cibble. At the end of the day " tomorrow is promised to know one and we are all dying every single one of us......
One reason I didnt let on to my husband (and I wish I hadn't asked as I would have preferred not to know. Really and truly) but once i did know I didnt want to tell him but encouraged him to remain hopeful and I always thought that no one really knows anyway and that massive heart attacks ends peoples lives suddenly and without warning anyway......
I hope you're ok - and trust me there is plenty of support on this forum.
" From the moment you know, you know, you know "
I think you did the right thing I really do. What is the point in knowing? The reason I am not cross with my hospital for not doing ct scans earlier which they should have done is that I don't want more that a couple of months to prepare ( and that's mainly paperwork!) I had a lovely summer up on the north norfolk coast in the sun - imagine if I'd known it was my last one - how much of a dampener would that have been? People seem to assume you're going to go all spiritual and deep but it is they who seem to want to deal with the concept of death. The person dying would prefer a bit of a laugh and big cream cake (take it from me) they don't want to start brooding on the meaning of life (which can't be worked out anyway). When my husband was dying I was always trying to get him to face up to it etc. What a mistake that was, I was being selfish. We should have gone for a boat ride and a pint while we could.
Mousehold Thank you SO MUCH for your reply xxx
and it means all the more as you responded whilst dealing with your own concerns and issue.
Also I don't think you were being selfish to try and get your husband to face up to dying because as i said above I feel I didnt give my husband the opportunity to come to terms etc and I'm worried that when he was in the act of dying he felt he wished he had known. So either way is hard but your response has made me feel better about it!
But on the other hand..... my husband and our children did all enjoy our last months together in a way that would not have been possible if anyone had known. it would have been a black cloud looming over us - We decided not to tell our children ( who are in their twenties and thirties just how bad it was although they knew he was being treated for hep B we didnt tell them about the cancer) - I'm sorry that you yourself have obviously had to go through pain and loss of your husbands death. Perhaps you now feel that you will be moving on to join him? In a spiritual even if not religious way.......?
I liked Rodeo Joes post above and the link he provided. It's very interesting.
Oh I deleted the link. Sorry, I didn't think anyone would read through all of it to get to the bit I quoted above. However Carl Sagan is brilliant, his astrological observation and speeches are brilliant.
My father died when I was 22. This was in 1982 when you weren't routinely told your prognosis. My mother was told during visiting times that he had only a few weeks left. She had to come back to his bedside and act like everything was fine. My dad must have known but chose not to acknowledge it so we all had to act like everything was normal even though he was having to sleep in my bed because it was too painful for him to be touched. I had to sleep with my mother and listen to her crying every night. She now wishes she had made him talk about it as she didn't get to say all the things she wanted to. And I regret it too.
Mousehold I am sorry. Can I ask why after a transplant your consultant has come to the decision?
I suddenly fell ill so in May I was told at the hospital that I had a few days left if I didn't get a donor on time. I just didn't know how to react. I had acute liver failure which is always sudden and very quick. I remember they told me to let my little children come in at that day. That was probably the most heart wrenching part for me. I just held them without crying.
Like rodeojoe mentioned, leaving younger kids was more scarier than death because I was not thinking directly of myself. I have a disabled daughter who has her own complications in life and a little toddler son. I have to say, I cried so much just imagining not being with my daughter. She is attached to me in such a different way. I think only a mother or father of a special child can explain that. She cannot cope when I'm sad or even have a little cut. Her first reaction is that I will leave her and go to hospital. Since all the ordeal she is even more attached to me. She continuously hugs me and will say I love you all day long. The thought of leaving her behind is my biggest worry.
I really hope there is something the consultant can do and if they can't, then I can only say that spend time with your loved ones and enjoy these precious moments. They need the memory of these moments to hold on to.
Good luck 
They did a late ct scan and saw secondaries in lung etc, the liver ultrasounds were clear because I had secondary liver cancer but not in my liver. I think it never left my body so although the transplant replaced cancerous liver it had already started going round my body. I did get a good year though so that's something I wouldn't have had, got a lot accomplished esp with my brain memory and logic back again!
How awful; as people have said; death comes to us all; though i personally dread all things to do with death; i am at an age where people/family are starting to die and i do have some regrets about wishing id done certain things prior to a family members sudden and unexpected, death. So, id say, as you are aware.....spend time with your loved ones; try and do all the things you enjoy; make the most of the time you have left; try and do stuff which will give you a laugh....no matter what it is...you decide how you want to spend whatever time you have left. I do hope you have some time to go yet though; very best of wishes to you. x
Mouse hold 😘😘 you are being so brave and I would like to thank you for posting ❤️❤️❤️ I think all of us on here are either experiencing illness or looking after poorly husbands/wives/family and friends - having someone so brave to post whilst in such a sad situation is very admirable xxxx it definitely is thought provoking ❤️❤️❤️❤️ I do hope your having some cake 😘😘😘😂
Awesome post,not too much I can usefully add,I agree,we are all going to die,its not that scary,indeed depending on your quality of life,its a good thing sometimes.I feel,a lot of us in 'advanced' parts of the World,are in major denial about the 'end game'.We are born,we live,then we die.What is so hard to understand about that?Hopefully its not ugly and long drawn out,apart from those worries,I'm totally cool about it-although its easy to be brave when your OK(ish).I often reflect about Alduos Huxley asking for-and being given LSD on his death bed to ease his journey into the next World/adventure.
I think we are on the same wavelength. Sometimes I feel it is more amazing we stay alive rather than die when you consider the complexity of the human body.
SO sorry the hear this. I did think I was dying last year, it turns out im not at all. I became very freaked out initially, thought about all the things I regretted and had thought I had wasted most of my life. I did think about the possibility of the after life, a good thought was I may get to see my grandmother.
The main fear was dying slowly and painfully alone. I hated the idea of sitting around waiting for some medical emergency to happen, I started to consider taking my own life because it would give control back to me, I would decide when I died. But there arent many ways to die easily as I found out by googling various ways etc. But I did find after a couple of months I started to accept death as a natural conclusion, something we all have to do, something every great and small person has to do. The fragility of life is shocking when you think about it, Lemmy and now Alan Rickman, alot of people I grew up watching and listening to have fallen now and im only 40.
I started to think about all the worrys of this world will be gone, money, job security etc, I would be at peace atleast and if the mind does still live I could find myself laughing at the rat race that is human existence.
Reading through these replies made me remember, when i was told i had a 50/50 survival i decided to stay on the organ and tissue donor list (in reality probably too much of me is affected by viruses, meds and general wear and tear to be of use) but i rather like the idea that maybe part of me, even a tiny part such as a tendon or a cornea, may stay behind on this earth, helping someone else.
Every comment made I can identify with..I got told just before my husbands 3rd transplant that he had about 48hrs to live if a liver never became available. .I remember feeling distraught at first then a calm feeling of acceptance he might not make it..luckily the next day a liver became available. .I felt so sad that a person died and my husband was left with the chance to live because of that decision to give another person a chance of life..I am so grateful for the 3 people who gave my husband a chance to live
Mousehole you are so brave and you are right most people that know they will not be here for long don't want sympathy just to be around their family and share their time doing things that make them happy...I have family passed away with liver disease and they seemed to accept that it will happen but coped with it in a peaceful and dignified manner. .spending time around the ones you love definitely makes it easier to cope..god bless you Xx
Thank you it is so nice talking to all these lovely fellow sufferers. Three transplants - my god I don't think I could cope with that! That is bravery and the fight for life. And you have other family passed away with liver disease - you must have been through the toughest of times. You are the brave one too. Some people seem to have such smooth easy lives! I love this forum.
With my second treatment I developed liver cancer, I am living with that. I still do 4-8 hours a week of endurance exercise. Its hard knowledge but I go right on living but only in the present, I do not dwell on the past or plan things for the future. I have been in liver failure for years. I am not interested in a transplant. I have chosen my own path, I do not want to fight liver cancer, I believe my last days or years will be better if I leave it alone. I was diagnosed almost two years ago with liver cancer, one tumor that is encased but growing in size, now its too big for Ablation. No one but me can do this, its my responsibility, I just hope for the best ending but I have almost bled to death 3 times now, extremely low platelets, inability to clot blood and brain trying to shut down b/c I have low serium sodium, 3 times they thought I was not going to make it. I am stronger now than a year and a half ago, I still cycle 25 mile treks on the ocean highway with traffic and it makes me happier than anything else or anyone else can. If this is my ending then it means enjoy, see life, be happy, be sad, be everything you can be, its your last chance. I am female and age 64, I live alone on the ocean.
I am glad to hear this but if you had only one tumour why didn't you get offered a transplant? -
When you say you almost bled to death how did they manage to control that if your clotting factors became so low?
secondly your experience stirs up my guilt as it makes me wonder whether I shouldn't have just blindly believed the consultants and doctors when they informed me my husband was dying ( HCC) To be honest I was always in denial that he would die as I always thought that like yourself he would pull through....but he didn't.
Also How and What enabled yourself to pull yourself up from being at deathsdoorstep?
Please forgive all these questions but I am still searching for answers......
I do not mind your questions, they help me. My husband does not believe I am dying. Try not to have any guilt or shame about your husband. In Hawaii they want me on a transplant list, its me who refuses as they drug test and search every bit of the body for cancer outside of the liver. That is not what I want the end of my life to be about. I am 64, my hep c is dead after two treatments but half way thru last treatment they found cancer. Canibis is the only medication I use. My doctors are shocked I am not needing their medications and that I can cycle on the ocean hwy. 25 miles hard and it makes me feel great. All of my organs are affected by my decompensated liver. Platelets can get as low as 18 but now are 70. First bleed out was after biopsy 2004, I told them it was bleeding and I was contracting but for 3 hours no one believed me then suddenly they realized I was bleeding to death and they told me they did not know if I would quit bleeding. A year of interferon and Ribavartin that did nothing but destroy my health. 2014 the second bleed out, no one knew I had varcies. I chose not to call ER, I was throwing up blood and spewing it, I thought I would die so I decided I wanted to go quietly and alone. My house the next day looked like a murder scene but I could talk so I called my neighbor. 3 weeks later I finally got my blood labs. My doc refused to let me have them earlier b/c she was angry I did not go to ER that night nor would I go when I called her the next day so she refused my labs and 3 weeks later I was walking dead platelets below 18, hemocropit 6. Straight to ER I went for two back to back blood transfusions. Then a treatment with Solvaldi and Olysio. The cancer could have been Ablated but I did a private consulation with the surgeon and he was honest. I decided no based on the fact that my liver disease is so progressed that I could easily bleed to death in surgery, I am so inflamed that I could have easily ended up with a clostomy bag and I would still need the transplant. So I chose living. No one believes I am dying I look so healthy. I work hard to stay alive. I rest lots, I exercise 4 to 8 very hard hours a week. I eat no much other than organic grains, fruits, veggies, freshly juiced veggies like carrots, dates, prunes, yogurt and organic eggs. I take no meds. I have had hep c since I was 21 and now I am 64. All I do is research what is happening with my spleen, liver, platelets, my brain and its low serum sodium level. I do not eat or live like others. I am alone and quiet. I never eat out or touch foods that are processed or eat things like salt nor do I eat things that will effect the performance of my spleen, gall bladder etc. i have had ascites 3 times, 20 pounds of fluid and removed it myself with diet restriction, fluid restriction plus staying long periods of time swimming in the ocean. They the doctors have never seen a patient do that. Some people think I am crazy but honestly I am ok, I do not want to risk dying in the hospital. I do risk my life often cycling on the ocean highway, this is the surf mecca and we have lots of tourists, thousands of them out here just on the north shore. I so hope you have gone ahead with living, its precious. I work hard to be happy, happiness is to be worked for. Do everything you can to enjoy your life, live some for your husband too. I am happy to answer any new questions you may have and I am fine with honest feedback, you do not have to ust say the easy things to me, I know what hard is and its my teacher. I am likely to learn from you. Aloha
That is one amazing and long answer! Thank you so much catfishjumpin for taking so much trouble to answer in such detail. Thank you for your words of comfort to not feel guilty.
All I can say is WOW! You sound so brave and determined and courageous! When you said you were vomiting and spewing blood and even then you didnt call for help but just wanted to die quietly and alone! That must have taken some courage but finally that is what saved you then three weeks later they gave you the transfusions. Was it just plasma or all of your blood?
My husbands ascites wouldnt go with the dieuretics and I think it was the dieuretics that placed a strain on his kidneys. Do you think that swimming helped disperse the ascites?
We would definitely have tried the cannabis but wouldnt have known where or how to get it here in England. I do not think it is approved here yet. it must be helping I am sure.
Your answer is one amazing answer and Thank you - You sound entirely devoted to maintaining your joy and quality of life and may you have many more years ahead swimming in the ocean and cycling on the highway - it sounds fantastic and free!
You are very kind, thats how I manage, the kindness of strangers, we really are all suffering together in life, it cannot be avoided and people like you help make life more comforting, thank you. My tranfusions were blood, I am not sure about Plasma but I do not think so. Aloha
And yes, swimming in the ocean equalizes the two volumes of pressure, the internal one from Ascites and the external one, the ocean, its likey to be true of a pool also but the waves here rock against my organs. Hope this clears things up.
I am. I have refused the transplant list. I am only on Pallative Care. I see my doc every 6 months. I have almost bled to death 3 times. Odd thing is, I am still happy, I am still cycling 25 mile treks on the hwy. i rest all the time. I eat odd things for my liver fuels like dates, prunes, juiced carrots, I eat none of the things people eat at meals. I avoid salt and processed foods. I work hard to stay alive. I have had hep c since I was 21, now I am 64 with liver cancer. I have had it almost two years but I am physically and emotionally stronger but I am also resting a huge amount. Exercise is my only work now. You just may live for awhile to come. We are stronger than we imagined. I want everything life offers me until death grabs me and I must accept it. Sending you aloha and love
in reply to Catfishjumpin
Wow 😂❤️❤️❤️ I love the sound of you Catfish 😘😘😘😘 the only bit I didn't get is the food 😅😅😅 now I am not a foodie but I do like the bad things in life 'cheese/steak/fattening sauces etc' - do you actually like the food your eating ??? Just thinking about if it were me - I would hopefully be stuffing my face with cauliflower cheese and filet steak 😂😂😂 drinking cocktails and having a fag 😘😘😘
So do you eat the food to stay healthy/well or do you have it because that's the food you enjoy ???
Totally agree with the canabis !!!! If they wanted to sort the NHS out that one thing would probably do it on its own 😝😝
Also I do believe that where you are living has a lot to do with it ☀️☀️
My mum and step-dad are 72 and 76 - they go to Spain sept to May every year and are both in excellent health - as soon as they get back to UK - mums knees start playing up they get colds and bugs etc whilst in Spain they don't get anything !!!!! Definitely the warmth and 'happy' living must have something to do with health - now that would be an idea 😂😂 prescriptions for a week in the sun ☀️☀️☀️ oh if only I was Prime Minister😘😘😘 much love to you and hope your feeling great continues ❤️❤️❤️❤️❤️
I love that attitude. There's a lot to be said about just ploughing on regardless. It can get you a long way.
Good Luck!
thank you so much for standing beside me for a moment and cheering me on, I cannot do this alone. I need shout outs of encouragement. I sure hope my attitude keeps me here a few more years. Aloha
in reply to Catfishjumpin
I am sure it will do 😘😘😘😘 we are always here with you xxxxxxx
Hiya Catfishjumpin. Just been reading through ur posts & all the replies from the lovely people on here. How are things now? These posts are a coupla months old, so are you a coupla month older & fitter & cycling alongside the ocean?
I am, thank you for asking. How are you doing? I am just living one day at a time, it keeps me reasonably peaceful. Aloha
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