Forum Replies Created
October 17, 2015 at 8:00 pm in reply to: Can’t find previous line of topic, so I thought I’d start a new one #89532
Dear Duke’s family, I read about Duke’s passing away earlier but could not find enough strength to sign in and write something – news about death upset me more now than it used to – 5 months ago I lost my dad, he was also diagnosed with CC so I feel the pain of loss over and over again when I hear about people passing away. Duke was a great person, I knew that, even if I knew him for short and just online. He will remain as a fighter, a hero, a role model for so many people on this site. Being severely ill himself, he managed to comfort me about my father’s death, he always found the right words, had a great sense of humour and compassion. My deepest condolences to you all. I know what loss and pain is…It feels like a part of your heart dies and you realise it is for good…It won’t change, it hurts a lot and it makes one extremely sad. Maybe the pain will calm a bit donw with time but it burns when it is fresh.
Dear people will always remain in our thoughts, talks, memories…They are with us and will be as long as our hearts will beat. I thought and thought about our lives and came to a frightening conclusion that the only permanent and steady thing in our life is change. Some changes are painful yet inevitable…Rest in peace, Duke, I will never forget you as some people, even if known for short, can never be forgotten as they were strong, bright, smart and unique.
Congrats, Pat I’m so glad to hear good news on this site! Wish you celebrate many more years without this damned CC and I believe you’re one of those who has beaten the illness. Take care and all the best! My dad was also very glad to hear about your story and you were hope for him. He didn’t make but when he had bad moments when he was ill, I used to keep his spirits up telling him about you. It helped
Carol, my deepest condolences, I’m sorry to hear about your dad. I lost my dad more than 3 months ago, his fight with cholangiocarcinoma was short as the operation was a complete failure, I know how much it hurts to lose dad. we must live on and as long as we remember our loved ones, they continue to live, means forever in our hearts, memories and lives. Until it’s time for us to go to the same place they’re now in.August 29, 2015 at 6:04 am in reply to: Can’t find previous line of topic, so I thought I’d start a new one #89522
Dear Duke, we are all guests on this earth, sooner or later we’ll all relocate, no living being will avoid it. Of course, it always seems it happens too soon. I get very sad when I read stories on this site but at the same time I can’t help thanking my fate that I actually got to know wonderful, supportive people here. My dad’s journey with cholangiocarcinoma was very short and he died because of complications after his operations and I’ll never forget your words to remember that meadow and my daddy walking on it looking happy like in my dream. You, fighting the same evil as him, kept supporting me and so many people on this site, that’s what strong spirit, bravery, kindness are to me. In my eyes (not only in mine I guess) you’re a hero.
Incredibly happy to read this news about Duke! He is in my thoughts! Hope Duke gets better and better and we’ll see him posting here himself
Hi Jules, I lost my dad 3 months ago and agree that when the body dies, our loved ones do not die, they remain with us in our love, memories.
I’m very sorry to hear about your mum but you’re not alone in this world in this battle against this terrible desease. In my opinion, everyone on this site be it a patient or a caretaker is a winner. I hope in the future cure must be found and will be.
Sending my support to you from Lithuania.
It’s not necessary to know a person for long to be deeply touched by the strength of his/her spirit, it’s not even necessary to get to know someone in person to feel how great and important they are to others.
I’ve already said that people on this site are amazingly helping, caring, understanding. Duke is one of them, will never forget how much he comforted me when I felt devastated. Will never forget other people who did that too, you’re all great.
When I was in a similar situation like yours, Chuck’s daughter, I wished for humane support and the possibility to talk to someone who knew how I felt. It helped me, this site helped me a lot. Chuck did.
The news about your dad isn’t the news I wished to hear but some things in life are inevitable, we’re all guests on this earth and one day we’ll all meet again.
I so much loved Lainy’s term ‘relocation’ when we spoke about the people who were not with us in this world already – my dad relocated almost 3 months ago but his love, good deeds, his spirit remain with us.
It’s good to know your dad is surrounded by the people who love him, my thoughts are with him and your family too. If my simple humane support can ease the pain at least a little, I wnt you to know that I keep praying and supporting you from far away.
Chuck’s daughter, I’m pretty seldom on this site because I feel like my wounds get worse and worse if I read stories of other people here but I felt as if someone’s pushed me to check the site where I’ve met wonderful people – your dad is one of them. Please, tell him I’m praying for him from Lithuania. My dad died after the hepaticojejunostomy because of septic shock in May, he had Klatskin tumor. Your dad was one of the great people on this site who supported me when I was down, depressed, at a loss.
I’ll be sending my support to your family, your dad is a very great and strong person, an example to follow. So was mine. Tell Chuck he’ll be in my thoughts and prayers. All the best for you and your family.
Great post and such wise words…In my last emails to Lainy, which she will read when she finds it I wrote to her:
‘My boss told us to try to stand in front of a mirror and say ‘I’m happy’ first. and to continue doing so during the day, then later we should add why we are happy saying ‘I’m happy because…’ the first reason for me to say I’m happy is because I had the greatest dad on earth. He relocated, we’ll meet again one day, I’m happy because I have a wonderful son, sister, mum, friends, penfriends, becaause I can travel, read, enjoy the morning rain, because kids are on holiday and so are we, because I have a funny cat, because the world is so colourful and that I’ve had srong experiences that made me know what’s death, loss, real heartbreak are. Because I can listen to those violins playing without crying already even if they played for my dearest dead dad.
I AM happy”
Yes, we must say we are happy even if we lost our dearest people to this horrible illness. This thought keeps me moving. A month ago I lost my dad. Life will never be the same but I must stay happy, he would wish for that most.
Dear supportive people on this site, thank you all for your support and nicest words that really helped me to calm down.
Hello Kris and everyone again. Have been very busy recently but haven’t forgotten the site and never will. Almost a month passed after my dad’s death, things have changed a lot. Mum keeps praying and burning the candles but she is starting to realise what really happened, I wake up and already know I will never see my dad’s smile, will never hear his silly jokes, stories, will never hear his supportive words and it really is devastating. My son is angry and keeps wondering why such a great person got ill and died after post-operative complicatons, my sister looks very sad from time to time and I always think of my dad and get often down myself.
There also exist some things told by others that annoy me a lot – some colleagues asked me how I had been and when I told them I was trying to live on they added that I would feel very sad and would miss my dad worse and worse with time – I really wanted to spit in their faces but just told me it was one of the worst things to tell someone who is in grief. I DO miss him like mad and all I wanted to hear was that pain will lessen with time.
Another thing that drove me mad was – people knew I met the boss of the clinic and told him everything I was mad about – they used to stop me saying there wasn’t any need for doing so. NO NEED???? My dad dies, we are humiliated, some doctors dont know how to act like human beings and NO NEED to complain?????? I’m glad I’ve done what I have done – many things got clear to me, there was a serious audit, people were warned, punished, etc…
I am very happy I could read the posts here – no matter where we live, we all have similar feelings and I want to add that sure, our dearest loved ones that passed away will eternally live in our hearts, but we will all carry on and live on and I don’t think we will feel worse. Time heals the wounded even if the wounds will never heal completely.
Hello, sad news from our side – On Sunday, May 17th 2015 my father passed away. It happened at 10.20 pm.
On that day my mum, sister and I saw that he was getting much worse. We called a priest, he came, blessed him and us, we prayed, I told my dad lots of different things, assured him that I was not a spoilt girl of his any more, I turned into a completely grown up person who finally saw how cruel life could be.
I told him his beloved grandson will be a good person who will achieve a lot in life, I told him to end his journey in peace. When I spoke, his blood pressure which was 60/40 with medicine kept raising.
We went back home and at 10.45 pm we received a call from ICU informing us about his death.
The next day we went to take care of all documents, we found the firm which brought his body to out home town to be prepared for the last journey. I also told the doctors not to give us the documents that we do not have any claims about his death as I do have and I will be calm only when there’s a medical audit about this case.
we prepared things for the funeral – dad as if sleeps now surrounded by beautiful flowers. Now we went back home for rest – two hard days are ahead. He will be burried in our family grave on Wednesday, May 20th at 2 pm.
When I last saw my dad in ICU, I got the meaning of one dream I’ll tell you later as I am very tired now.
Rest in peace, dearest Daddy…I now see some slightly sorrowful smile on your calm and beautiful face. we will survive and carry on….The last goodbye is the most heartbreaking but we’ll survive. I will always love you a lot.
Thanks a lot, Lainy. I hope you’re quickly and well recovering after your operation, all the best for you.
The picture I’ve got was scanned from older pictures we had in the albums, I have always loved it, I’m uploading it. Mum and dad seem to be so happy in the pic, they have always been happy and caring.
Dear supportive people on this site,
Thank you all for your support and kind words. I know CC is a terrible desease but I also know that indifference of doctors is worse than any cancer.
From my colleague whose brother has leukemia I found out I can demand an internet patien’s card, the one she’s got – it means you get the password, sign the agreement and can see all the descriptions doctors hasve made and are making online. Weird no one in the hospital told me about.
when I opened my dad’s case I saw the possible diagnosis made first – T2-3, Nx, MO hilar CC. Type 2 in Bismuth-Corlette classification with involvement of vena portea. The consilium suggested resection of bile ducts. When dad was opened up, it turned out it was type 4 according to Bismuth-corlette classification, as far as I got, inoperable, might be even from the results of the scan. Still, hepatectomy as well as hepaticojejunostomy were performed followed by huge complications of bile leakage. Also, were were lied about clear margin while hystological research suggested there were traces of cancer at the margin of resection, both bile ducts were cancerous. T2N1M0 G2 adenocarcinoma was the final diagnosis.
The worst happened when my dad started having a local infection inside and biloma that kept getting worse. Naturally, his state was getting worse too. We kept asking for help and were assured some professors had a look and decided not to do anything while other doctors suggested drainage. when dad’s drain was replaced, the bile didn’t leak out and then this biloma appeared, all they had to do was drainage in another place first but no one pid attention though he had chills and felt sick.
When we went to the hospital to demand for more help with my sis, we met a doctor who was very arrogant but after my firm and arrogant demand he moved his lazy ass and phoned another doctor to come for echoscopy.
My dad was getting worse and finally when the ‘gods’ decided to take care, they diagnosed biliary peritonitis and dad was reoperated, relaparotomy showed the necrosis of the part of the liver where this biloma appeared, they could not identify the anastomosis, so external bile fistula was formed in case my dad survives. They washed his belly, took out parts of necrotic liver and put 3 drains.
We were rudely told to take all dad’s things from the ward and get out. I burst into hysterical cry while my sister could not even make a move.
Deep septic shock followed and we were told he was in critical condition. This condition keeps going on for a week now.
ICU doctors are brilliant but we don’t need their effort. If my dad wakes up, he’ll live with external bile leakage, more operations might follow, also pain and realisation that he is a complelely disabled person…Honestly, I’ll feel relieved when he rests in peace and I wish God takes him to this meadow I keep seeing in my dreams. But if he wakes up, he won’t be left alone, we’ll surround him with love, care. I don’t think he’d be happy to wake up to die a few months later but if this happens it’ll also be God’s will.
People, do not make the mistakes I’ve made – never trust doctors, check them, I was too naive and believed things were great, best doctors take care….and the person kept getting worse at their presence when they refused to help.
Of course, I’ll make this case public – complaints, journlists to interview the guilty will follow later. Not because I wish to but because I have to warn others. I won’t sue them – our system never finds a doctor to be to blame but I’ll find the ways to warn the society to beware of such indifference that kills.
Please, pray for my dad to go to that great meadow I’ve seen him walking on. This life is too cruel for him already. Now he doesn’t feel pain. We keep visiting him, we talk to him but it is heartbreaking and devastating.
Before the relaparotomy my dad kept asking me to bring him his other shoes to go home as the ones he went to hospital in became too warm for spring. But he won’t need any shoes going to the place he is on the road to.
I’ve never imagined I can be so strong. How can I post a picture of my mum and dad which was taken years ago but which really indicates how much in love they were?
I won’t stop coming back to this site because I wish to share my story, to comfort others and to learn to carry on with life. we’ll all finally meet, even those doctors, acting like gods, will go to that place one day – if I were them, I’d never look at the living person as if he was already dead, I’d show respect.
I believe we have lots of great doctors who are great people just it happened so we havent met them in this situation.
I keep waiting for the news, now, we cannot be told anything good. All I want is not to see my dad suffering…I was assured he doesn’t suffer now.
Hello again, everyone. A very grim update on my dad – as you know he had bile leaks after the operation. He kept staying in hospital but the problem was his doctor had to go to Germany and he was left in the ‘care’ of others. We didn’t suspect anything wrong, thought the best doctors work in this university hospital, well-known, etc.. but to be a good doctor and to be a good person is something different…
A few days later they changed the position of my dad’s drain and noticed that the bile stopped leaking. Echoscopy showed that there was some bile in dad’s belly. His state stared getting worse and we started looking for help. we were assured things were under control but his state was getting worse – he felt sick, finally could hardly walk. we went to the doctor to ask for immediate help but we were literally mocked at. Histological research said dad’s lymph nodes were affected yet his surgeon first thought they weren’t and even spoke of clear margins yet the doctor who we were visiting, said dad’s case was inoperable at all and that there was no use as both ducts were affected by cancer and that cancer could not be fully removed. I didn’t believe him. he showed a very grim future prognosis for dad without listening to our complaints about dad’s state. only when me and sis demanded blood tests and drainage, blood tests were made and the results were shocking – blood indicated infection. we asked for immediate help but it arrived much later. it was saturday, no one cared…such a helpless situation but we kept demanding.
dad’s state kept getting worse. the echoscopy finally showed peritonitis and he was quickly operated again. we knew what to expect…Now he is in deep septic shock, not breathing by himself, in IC unit. At least he doesn’t feel pain. we were told to expect the worst outcome snd today im going to say goodbye to the best dad in this world. I have cried all my tears and now im waiting for the call from IC unit with the tragic news.
My dad is dying not because of cancer but because of total indifference of doctors and we’re going to write a complaint. it wont change things but I want to ask the ones who didn’t take proper care of my dad not to repeat the same mistakes. I’ve lost my belief in doctors, justice and humanity in such institutions.
It’s just a question of time when my dad dies. his kidneys are stopping working too, at least they say he doesn’t feel pain as is given medication…i got relieved writing it all here, now time to take care of a devastated mum (i hope she will survive somehow) and of my devastated son who loves his granddad to bits and who has always been loved back.