Not on a downer here at all.But,on a slightly dark note-I suppose?We are all-slightly damaged goods-in our own way.I think it's very important to accept where you are,and what the end game signifies-which in our Western culture,is in many ways,is the great taboo that perhaps,many of us have difficulty in accepting- or indeed acknowledging.But-all of us,I assume,have a support system-generally known as our families-the great unsung heroes,who put up with our health issues/our moods/our irrationalities-and indeed-at times,what must come accross as our complete self-centered issues.I mention this because leaving aside our huge debt of gratitude to our 'carers'.We all have a debt to them,I think, to make our wishes known pre-end game.IE, wishes in a coma/on a hopeless ventilation situation etc.Also,of course,transplant wishes etc.I think the least we owe them all is transparency.On a lighter note,if they are anywhere near you,and you can physically do it,rugby tackle them now and kiss them endlessly.love to all,Andy.
It's a difficult road.: Not on a downer... - British Liver Trust
It's a difficult road.
Hey City man. .you like me and can't sleep guess your right. .we all can be self centered at times consumed in our own misery..nice to have people around to support you..I never talk to family about my issues they don't even know that I have cirrhosis. .I tend to keep things to myself. .but it's good sometimes to let it out to people you don't know that have the same issues and fears..get what your saying..Good night City man Happy days will come.
Wow,not my business,but it must be hard not to tell your family why you come across as such a pain in the ass-sometimes!And yes,you're right,I can't sleep-if you paid me,its a lonely place sometimes-often in fact.7/8 hours-I find my own company palls big time. But totally agree, apart from the value of asking for help/advice on this supportive,totally brilliant forum.Its great to vent-and dare I say,occasionally bare your soul,and share stuff,that just maybe your nearest and dearest can't cope with.Good to hear from you-go to sleep 
Thanks Andy I was needing that.
Morning city
Yep, everyone is self centred to a degree, even close loved ones. As I get older I see this all the time, peoples patience runs out and attention drifts, but people will always try and look after themselves in the end.
We are all going to die, the clock is ticking the minute we are born, the environment/lifestyle we are in then can affect that clock and its never for the better I would say. Its a taboo subject is death, people think you are weird if you think about it, but its very important because its the last thing you will ever do.
So yes I agree.
Pre transplant when I knew I was in a bit of a corner, I used to share with my family in sometimes over graphic detail what I wanted surrounding my death and arrangements afterwards...... I found it ever so soul cleansing to be open and free about the subject, not morbid, in fact a bit (not a lot) silly about the taboo subject, friends and family understood in differing degrees, but all (I believe) found some comfort in the fact I was "happy" to broach this taboo subject with such light brevity..... we all deal with our issues in individual ways, none is right or wrong, but I felt unburdened by being very open, it helped me face my fears which melted away as I shared them.
Absolutely,it's really good to prepare your nearest and dearest for what is going to happen,and I think,even better to prepare yourself too,because-I believe,we all have a slightly rather over-inflated sense of what will happen when we shuffle off this mortal coil,which,in reality,will be rather less of a World-shaking event than we would wish to believe..!!
Yes; we must try and make the most of our lives; of each day; enjoy the small things in life. I am one of the people who constantly fears and worries re death! the family is often far more important than we all realise , sometimes only when its too late. So enjoy any time you have left with them. Happy Christmas to you all x
Hi Cityman, when I started reading the headline on my email, before clicking on it I knew that was you writing this. I went to sleep at about 02.30 am and I really slept last night. Needed to because we have grandchildren today and part tomorrow and I need my strength! Let you and I play "Follow the Leader today. I bags I am the leader - the leader says Let's all try and be cheerful today?" xx
😂😂😂 me too - must be the way city writes lol xxx although I am disappointed - thought it was gonna be a poem 😘😘😘😘
Yes Robswife, how about it Cityman? Write another poem and, (if I understand it) I will reply. I also love writing poetry!
Hi Tajnana how are you love? It's your friend from Canada!!!!🇨🇦☃❄️just posted something that has been bothering me for 30 years and I guess everyone has similar problems regRding the stigma attached to Hep-C patients. I've been fighting horrific skin infections/lesions, i've been on antibiotics for over two months and I five more months to go. They won't even touch me right now because of the infections until they have that under control. Anyways just thought I'd give you a buzz let you know I'm thinking about you and everybody else. Hopefully you're doing fine talk to you later bye for now
Hi Enjoylife2, hope it won't be too long before you are better. I of course am thinking about you. Cyber hugs. XX
Thanks sweetie cyber hugs to you too!! "What doesn't kill you make you stronger❣" wishing you lots of health and happiness through the coming new year .☀️🇨🇦
I think this is a lovely thread of conversation, and it brings tears to my eyes to think there are such loving caring people out there. It's so soul destroying when you read about your loving families, and close friends and the love, and care they give you. Soul destroying for someone like me that is. My family don't give a dam about anybody but themselves individually. My family know how lonely I am dealing with an ill husband,and a mentally handicapped in law. I never see a soul, I never get a phone call. I wonder what I have done in this world to deserve such isolation. One thing is though, I am used to it, I've put up with loneliness for a long long time. It is HORRIBLE but I just get on with it, at the end of the day what choice have you got? I think this is why I have a drink problem in the first place.
On a more jolly note, Merry Christmas to you lovely wonderful caring people, and wishing you all a healthy and Happy 2016.☃☃☃
Allofatremor we all joke with each other on HU if we can - it beats having Riba Rage lol! We are only on this website but, we care about each other. You do not say what part of the U.K you live in? I do not know how you manage alone by yourself, I know I could not and would not! I can honestly say I am lucky because I have friend and family support (and I need it to continue with the treatment).
Merry Christmas allofatremor and I hope you and your husband have a Healthy New Year! Cyber hugs. XX
Darling 😘😘 you won't have done anything to deserve it !!!! The problem is with them not you ❤️❤️❤️ you obviously have a loving kind heart to look after those around you xxxx we are all here for you 😘😘 hope you have a lovely Christmas 🎄🎄🎄❤️
That's bad-really bad to hear,but if your here,you know your not alone-right?Strength doesn't need to be external,It comes from YOU.xx
You are not alone when you share with us all on H.U. I sense we would all like to reach out to you and cuddle you. you sound strong and brave, I wish you more strength and a Happy Christmas, may you all be as well as possible. X
Thank you PCB, you are such a courageous person, all you have been through, and still suffering, yet you still find time to wish others health and happiness. You have yourself a joyful, wonderful Christmas, and a healthy and prosperous new year.
💝💝💝
hi city man and you rabble rousers out there your all so right about family without them wed be god knows where my daughter and i have had some deep conversations and some laughs and tears main thing is shes always been very easy to talk to i think its a lot for her to take in my wife is differerent as she is older and like me doesnt think about it all to much as shes been ill herself with heart probs so we both know the score in our own ways and also my other daughter doesnt dwell but i do worry about the one i talk to alot shes 27 has a young boy of two so a lot going on anyway the point being without them id be in a hole some where so god bless them happy christmas to you all love and kisses ricky xx
Hi Andy, took on board all you have said. I have a mother who neglected me at birth and turned up when I had my first liver failure 2010, took a photo of me bloated and yellow and wanted to sell my story to a magazine for £250. I kept forgiving her behaviour up until then. I just have my Auntie who can't empathise for her own reasons so I seek solice with my support worker and the few people I trust. Noone seems to understand what liver cirhossis entails nor should I expect them to. I look pregnant through ascities, have a catheter bag on my leg and just go about life without moaning and groaning. Liver disease is cruel. I can't trust my nearest and dearest as I have none. I just have myself. Your post is very real, It must have touched a number of people including me.
Happy christmas Andy
julie x
My husband is going under the hospice now we have been told all the doors are shutting cannot get a transplant we can not get on any stem cell trials we cannot get alpha pump they say it's to evasive for my husband but I think that comes down to money my husband had open heart surgery 5 years ago and he has never recovered we think it triggered the liver problem a year ago they said no liver problem showing up now they saying he has 6 months very cruel well that news was our Christmas present we are going to enjoy Christmas and new year with our family then take day to day. Best wishes for Christmas to you all X
So sorry. Try to make the best of this Xmas. Family are really important.
Have a wonderful Christmas you are in my thoughts and prayers 🍀
Sorry folks about the tardy responses to my post,yawning like an exhausted Elephant,but sleeping like an owl on amphetamines.This is my cunning end game plan- hire a mini digger,dig a hole in our garden,chuck me in-(musnt be near a water course-lol),my wishes-couple of Dylan Thomas poems+1 of mine-argggh!joey ramone -wonderful life/Jimmy cliff-many rivers to cross/Jeff buckley-hallelujui/pil-religion(spoken version),money saved=£500 behind the bar for all my nearest and dearest to have a tidy P+as up.Love to all xx
yes but Cityman you know you are on the road to recovery with the treatment you are half way through it I think.
However I completely endorse your words talking about ones near and dear :
"On a lighter note,if they are anywhere near you,and you can physically do it,rugby tackle them now and kiss them endlessly.love to all,Andy.
*********************************************************************JJust thought i'd copy paste this poem for you! as you like Dylan Thomas
Do not go gentle into that good night
Dylan Thomas, 1914 - 1953
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
I might or rather i was pondering whether to post a poem I wrote very recently but it's a bit depressing and not really very festive at all!
Go for it-it can't be worse than mine!!......On the Dylan Thomas thing,there are many fine poems,an astonishing lyric poet with a Celtic fascination for the sound,tenor and rolling wonder of the sound,the beauty and majesty of the power of words,one for me-as a gardener sums up life for me is'the force that through the green fuse drives the flower',Its my life-in a nutshell.,best,Andy.Do put your poem up!
Thank you Andy from an unsung hero. We discussed as many end of life scenarios as we could think of at the very beginning when things felt very bleak, but it was worth taking the time as, once we had done that and understood each others fears & concerns, we were able to focus on each day together and enjoy the good days without feeling the elephant in the room. On the evening that I drove us to his transplant we were relaxed & calm due to the effort we had put in early on. So yes, talk, talk & talk some more. It's hard, you cry a lot, you get angry with the situation & each other but for us it was definitely worth going through.
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