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whenever I check here, I find some very supportive and hope giving messages I’m extremely thankful for!
I blamed the doctors in my previous post but I was wrong to do so – they did and are doing everything they can to help my dad to beat cancer. My dad likes his main doctor a lot and so do we. He really doesn’t speak much but explains things when there’s a need. He usually operates those others refuse to operate and gets good results.
Hepaticojejunostomy is a very difficult and complicated operation and I must be glad the doctors achieved clean margin and removed everything that had to be removed. Now we have to wait for this 1mm fistula to heal out by itself.
In general dad is feeling ok – eats the food we make with doctor’s recommendations, walks, reads juts from time to time he has some fever – we got scared but the doctors do not see any signs of infection. he is also given antibiotics.
We’re wishing to see dad back home in his usual environement. he is happy about the fact that our family is strong and supportive. He became very sensitive and can be easily moved to tears but I love this in him, he has always been a great man, an excellent father to me and sister and I must say he’s raised my son too – he has always been an example to follow for my son. We trully hope we have many great moments to share with him in the future.
hello again, could you please answer some questions for me – my dad has got a complication – the bile leakage. The doctors have found a fistula. my questions are:
1. do the doctors not doing anything now but waiting and giving antibiotics act correct?
2. what are the ways to correct this complication?
3. does it mean we can expect another surgical intervention?
4. is it a very dangerous complication?
5. can it heal just with time without performing any interventions?
exactly, seek for another opinion! and good to know you’ve come to Mayo.
My dad’s tumor was also 2cm, klatskin tumor, he had a resection 9 days ago. I’m also going to ask for another opinion about his bile leak and further treatment though we tend not to do any chemo. afterwards.
things can be solved with good people around, I hope you’ll be treated by the best doctors in the USA. All the best for you. You sound like a very strong man, like so many people here too. Such people are sure a source of my admiration.
My sister spoke to the doctor today , he assured it’ll be solved just more time is needed and finally he managed to murmur that they managed to achieve a clear margin for our dad. I am so mad and really the only word that’s coming to my mind is ‘pissed off’ by the way our doctors behave with patients’ relatives – they always pretend to be so darn busy that they don’t even talk to you in a normal, humane way. When we spoke about rehab for the dad, we were told not to expect – me and mum just thought wow, a person worked for the state for almost 50 years and turns out his cancer is different than that of a politician who was asked to go for rehab after whipple performed for his pancreatic cancer. I am sooo mad about this social injustice and the attitude towards an elderly seriously ill person that I’m literaly started feeling some physical pain. Sure, we can afford to pay for rehab, no problem, like we could afford to bribe the best oncologist here but this is what makes me completely sad, I realise how backwards we are in comparison to the western world where doctors talk, explain things, pay respect. We still need to go a long way to be able to be considered not a post-soviet messy state but a civilised society.
I’m sorry for sounding so negative, but these are the issues we’ve faced. my sister is less emotional on these matters but me and my mum are of the same opinion. In general, when my dad was a boss of a building company, things were so different but now he is a seriously ill 75 year old who has already reached the average age for a man and the state thinks he is not necessary. It’s always like that here. I have no idea how poor people with no relatives cope with cancer here – luckily, we can take care of him but so many people cannot and die instead of being given the best options in treatment.
I do believe the surgery was well performed but what I really believe in is a doctor must be compssionate too as well as informative. Maybe I’m wrong judging him but I mum was mocked at before the operation when she asked about ‘radical treatment’ – she was told she used the phrase she herself must not be familiar with. We are clever people, not stupid ones who don’t get things.
Other than that, things are turning for the better – dad’s voice is becoming stronger, he says he is feeling fine, wants to eat, walks, his liver enzimes are getting better, his bilirubin level is 70. he says he doesn’t feel pain which is good to hear. Just as far as I got (and not from the doctor) that this bile leak is not a complication.
If not this site and a few close people in real, I’d feel devastated, now I’m getting stronger and am learning to demand things which must be naturally given, this situation has taught me to behave the way I find it necessary without feeling any uneasy feelings about possibly being not right.
and I wish to encourage everyone not to give up – look for options, visit several doctors and find your own one who you and your family would feel comfortable being around with, I’m going to consult a few more for further actions. I won’t let anyone look at my dad as if he is a walking dead of 75.
I’ve found so many reasonable posts, have read them all carefully.
A quick update on my dad – he is getting better but what makes me worried is that his bile still leaks and yesterday he had an ultrasound, today we’ll find out what for.
How long must the bile leak after the surgery? It’s the 9th day after his operation
I felt very happy after reading Fred’s story – hope his son will recover soon. So great to know there were no complications after the operation.
I’ll be thinking of you, Lainy, and my family, who got to know you too, will be sending you our support from far away. Yes, I told them about people on this site!
You’ll be missed as I suppose you won’t be able to post for some time after the operation but when you can, I’ll be waiting for your great posts again. I wish and hope operation and post-operation period will be smooth for you.
P.S. – love the humour in the posts
Hello again! How have you all been? I hope you’re doing fine.
Today our close relatives are visiting dad so we stayed at home, am going to the hospital tomorrow. I spoke to him on the phone, his voice seems to be stronger and things seem to be stable.
Lainy, my son is 16 and sure not used to seeing me or anyone else from the family upset and down. Now he realises it is very serious and is scared and at a loss. Today he spoke about how short human life actually is and how painful some things in life can be.
I’ve decided not to take him to the hospital any more – I’d rather he visits his granddad when he comes back home. we have no idea when it’s gonna happen though.
I started looking for infor about rehabilitation possibilities as both of my parents are thinking of going somewhere together. They got to know one another 51 years ago in a town called Druskininkai where there is a great rehab center it would be cool if they went there again to get to know each other even better again.
Pat, if even such a hercules like you get emotional, means it is fine to be so sentimental. I always cry reading whatever story here and keep admiring everyone.
Also, seems I forgot to send you all best wishes from my dad, whose name is Marijonas.
Life will never be the same as it used to be. Last year I visited India and saw so many different things – from complete luxury to poverty. People living in the streets kept smiling a lot. This country has changed something in me, we also saw Varanasi where a lot of people get cremated near the Ganges – their attitude towards life and death inspired me – live, enjoy, do good things whatever happens, be able to live here and now without long plans and postponing happiness for the better days, now are the best days to do things we feel like doing.
Dad’s illness has changed me even more. I thought when you think of years tehy seem so few but when you think of days they seem to be so many. Just a year but 360 days which I wish to live to the fullest. I refused all things that made me happy until the dad’s diagnosis – reading a good book, walking in the woods, making grand travelling plans with my sister, seems like it’s time to start doing it again. I even felt like I have no right to listen to the music I love so much when my dad is in hospital but I’ve realised it’s incorrect – I must carry on with what inspires me to be strong and help other family members.
I’m feeling lost, sad, scared but hopeful at the same time, what a mixture of feelings. I think when dad comes baack home after hospital and rehab we’ll walk a lot together and I’ll hear all those funny stories he loves telling us over and over again.
Best wishes to you all!
Hello all dear suporters of my dad, today I send him all the best from you all and he was excited he got wishes from abroad!
Today my sister, my son and I visited him again. lol, dad keeps telling those funny stories we’ve heard hundreds of times before but remains very sensitive and can get easily moved to tears. He is doing ok – very little bile leaks from the last tube in his belly and the doctor said if it stops, they’ll take the tube out. He can walk a bit, eats too and seems that his bowels function just right. He still has jaundice bt it is better than just after the surgery. He’s lost weight, seems he’s lost his strength and started looking older, helpless and tired. This has influenced my son and when we got back home, he burst into tears and said he couldn’t bear seeing his grandpa like this…My son got down. His grandpa has been his biggest supporter since the day his father left the family. He is used to seeing him strong and caring and now we take care. I think my gloomy mood and constant re-reading things about Klatskin tumor has also harmed my son’s state, so I’ve decided to visit just this site where everyone is a real survivor to me – everyone. So is my dad.
I had a long talk with my son – we spoke about life a lot, we must fight, be happy about today, the spring, even it is the worst April in our lives.
By the way, seems that dad has fever from time to time but we were assured it is not an infection.
I thought that whatever happens, people like my father are happy – we care for him a lot, he is loved, taken care of, visited, kissed, helped in every possible way. this is what really matters in life. Love is what counts.
Also, my dad’s exact diagnosis is Klatskin tumor, I’ve read it is classified as hilar CC. When we are about to leave the hospital, we’ll talk to the oncologist in a more detailed way – the doctor speaks little but does a lot it turned out. He seems to be very happy when things get in control.
Hello to all of you! I hope you’ve been doing fine. Today me and mum spent a lot of time with dad. He seemed a bit helpless, lost today, easily moved to tears but then a bit later he started telling the stories from his youth again and we got relieved .
He is doing pretty well – the catheter was taken out and one other tube as well. Just one tube remains together with epidural anesthesia mechanism.
He can go to the toilet on his own, started eating and asked us to bring some light food from home too, he feels hungry. He asked for natural yoghurt, boiled eggs, curds. I’ll read what he can eat more throughly too but we’ll bring him the food he asked for.
He says he is happy I’ve found this site. He thinks it’s great to hear other people’s stories and to share his own.
Another good news is – there’s one man in their ward whom we I can say made friends with – he had cancer in his stomach and his stomach was removed. Before, he had chemo treatment and today the doctor told him good news that cancer hasn’t spread and is in control and he is quickly recovering. We got very excited about the news and are keeping our fingers crossed for that great man who encourages my dad too. also, he gives him info about many things, they talk, share things, simply laugh and sure wish everyone all the best.
I hope this complication free period will continue though I’m sure scared a bit too.
Hi again! An update on my dad – his temperature went down, the doctor said it was a reaction to the surgery and not an infection. He started eating a little and seems it is fine so far. Now the doctor says they keep their fingers crossed that the stiches inside heal well. They took one tube out of his belly already but one remains.
He is in a good mood and talks a lot. I know he always talks when he is nervous. We hope for the best possible outcome.
Thanks everyone for the support and good pieces of advice again. Things seemed very well with dad but later he had temperature 38,3. We’ll see why. I’ll know more about his condition a bit later today and will sure update.
The funny thing was that my dad kept remembering some funny episodes from his youth we have heard hundreds of times about
It was great to listen to them again, when mum asked him to stay calmer, not to disturb himself, he told her he hadn’t spoken for 3 days and thus needed to talk.Another funny thing was that some other woman was looking for her husband in the ward and mixed my dad with him lol. She kissed him and then my dad told her it was cool but she chose the wrong guy to kiss
My dad is so funny – he also observed the nurses in IC unit – he said one day all were dar-haired, the next day all were blond and then they all mixed up. The thing that annoyed him was the sounds from the machines in IC.
I wish to believe his temperature is a reaction of his body to the operation. Now we hope to see him getting better. We miss him so much at home. We all live close and often visit one another, their home seems so empty now. But mum is suported by us too – we buy her food, sit, talk, laugh all together. She started blaming herself about dad’s desease, she says she was too spoilt, grumbled about trifle. It is complete nonsense and we’re trying to make her sure we just get ill because of many unknown factors.
Dad misses home and his buddy – the cat Murphy
who he takes as his family member too. We visit dad but Murphy cannot so he asked mum to spoil him a bit from his side too I’ll update on his condition later today. I wish for a bright, sunny day for all of you.
Hugs from Lithuania
Hi again!
Whenever I go back here, I always find very clever and comforting words, thanks a lot for that!
My dad is already in a post-operation ward, he can talk, even started walking little by little! Great news for today and those elevated enzymes are getting better they say, so the decided not to keep him in IC any longer.
Lainy, I’ll write all the questions I wish to ask the surgeon, what a good piece of advice.
Pat, I have already started telling my dad how we’ll take care of him when he gets back home. I made him be happy about my son’s whom he loves to bits bright achievements at school, we talked about such things and I hope it helps him to heal quicker.
Father says he doesn’t feel any pain but it’s because they give him medicine to control it. We’ve also bought a special belt to put on the belly – it is meant to be used after operations.
I have a very bad feature to think of negative outcomes instead of being happy about today’s results but am learning to become more optimistic. Father is optimistic. I’m sure just me and my sister know of all possible outcomes but we will just give Pat as an example or others who are fighters and survivors. Dad knows many of you already, he even told the doctor that I’d found the site.
My dear friends, you are already known here in Lithuania as a great support team, as great survivors, fighters. Our thoughts are also with you, your close people. My sister couldn’t help admiring Duke’s thoughts, she read a few stories here too.
she asks me to report things to you before I visit her and mum and I wished to do it myself.stay strong too and I’ll try to learn from you, guys. It’s never late to do so. Lainy, feel free to use humour, no need to be sorry for that, your posts are great, humour is always necessary and your spirit is like that of a warrior’s, I admire you all, wonderful people here on this site.
Thank you from us all.
Good morning from Lithuania,
A quick update on my dad – still stable, but liver enzymes are higher they say but they were abnormal before the operation as well. I’ll be able to say more when my sister comes back after talking with the doctors. Some things make me mad – we, being in such hard position, must run and catch the doctors who are not very talkative. I’ve read people here know what type of CC they have, we are not told much, even if my sister is a doctor and asks them to speak in all possible medical terms. I’m much more aggressive in general than she is, so when I go to see my dad tomorrow, I’ll try to catch the doctors who seem to be running away from us. I know this don’t change things nd I know they’re busy but all I wish to know is more detail, now I know that it’s CC and that’s it.
Won’t hide – I keep thinking about all possible options – positive, negative like post operation troubles then possible recurrence, etc…But I keep remaining calm and positive. Need to work, take care of my son, mum and sure dad.
All the best for you all!
Aiste
