Hello everyone
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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.
Aiste, I am sorry to hear about his bilary leakage, this location where the bile duct is rejoined together is perhaps the toughest part of this surgery. My point of bile duct resection is built up with scar tissue which eventually restricts the flow of bile within the bile duct. I have been witnessing lighter and lighter stools, for a few weeks, this has happened before and I am hoping for it to change back as before. Pain too and I do my stretching and I massage the area hoping to get things moving a little, I hope to avoid a stent as long as possible, I am not jaundiced yet but I see this condition on and off. hopefully it will subside . The excitement never ends and this bile leak could explain your fathers temperature fluctuation. Let’s pray this too subsides and functions better, he is moving around and walking some, this helps get everything moving a little. You are all in my thoughts and prayers, Pat
Ice tea…… Unfortunately, bile leaks can be a residual side effect of such a complicated surgery. We have several reports on this site in fact, our Matt has been dealing with it for quite some time now. I hope he will be able to chime in on this subject.
Otherwise your Dad’s progress sound encouraging. Each day will be better than the last and I am positive for the bile leak to be dealt with as well.
Hugs,
MarionI’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
Duke…you are so right. It’s true for everyone…patient…family…friends alike. I had driven past one of the local big cancer/chemo centers here in town hundreds of times…but never paid any attention to it. The first time past it after I left the GP’s office that first time….it suddenly hit me. Then, going to Mayo….and into the oncology section….it all just “hits home”. As for our son, now 35, he’s always been an old man in a young body.
He didn’t talk much about everything, but he mainly just wanted to know that I was “okay”. Right after the first chemo….I was at thier house….and feeling crappy , he came over, put his arm around me…and told me that I was tougher than the cancer…..that he knew I could “do this.” My DIL took the opportunity to be “the one” to do for me instead of the other way around. Our kids will surprise us with their maturity and even growth if we let them. We didn’t even really shield our 3 year old grandson completely from what was going on. He knew I was in a big hospital a long way away and I was sick with an owie…but that the doctors were going to take out the owie and make me better. His big question was, “Are you in the hospital? “….or….”Are you at your home?” I think in his mind, as long as I was in the hospital, I was sick….and if I was home, I was better. When I had to go back to the hospital because of blood clots…and another time for transfusions….he again asked the same question. Just this week, when I face-timed with him on the i-pad, he asked if I was “at your home?” So, he still has some questions about me being healthy. I think the thing is to not give too much into to younger kids…..and with teenagers…..I think most are old enough to workk through any problems they have with this. At our local oncology center, they have a group for kids of parents with cancer…sibblings with cancer….really anyone close to them with cancer….to help them work through their feelings if necessary. It’s sort of a group therapy idea….but informal. Julie T.And it’s not just teenagers who can be affected. In December I brought my two sons (ages 32 and 26) with me to a chemo treatment. My goal was to take some of the mystery out of it. Instead I think it sent their minds somewhere they had never gone before (at least consciously). We did not talk much about it on the way home or since. In the long run I think it was the right thing to do. Short term it may have been a shock to them.
Duke
Aiste,
I don’t post as often as I would like to. My husband had his extended resection 1/12/15 and his recovery, which has been excellent but long, keeps me busy most days. That and caring for my three teenagers.
I was glad to read that your dad’s surgery went well and his recovery is positive also. In one of your posts, you mentioned that your 16 year old son now sees that Grandpa’s illness is quite serious, and feels scared and at a loss. Despite how awful this disease is, your son may surprise you with new maturity and personal growth. My son was 16 last summer when we received the diagnosis and very grim prognosis (before we found the amazing doctors at UCSF that were willing to try to cure him). It hit him very hard and we were very worried for him. We were surprised by the huge leaps in personal growth that developed, and by his demonstration of love and support for his dad and for our entire family. It sounds like your son is a “deep thinker”, as is mine and they do grasp that their childhood feeling of security and permanence is an illusion. It is a cold, hard lesson to learn, and one that no one wants their child to experience firsthand this way. However, there can be a silver lining to this dark cloud -they may see what a blessing life is and move forward in a more deliberate way. Mine did, and I hope yours will also. One thing that I believe helped quite a bit was maintaining open lines of communication, talking about our need to find healthy outlets for our stress, and also remaining positive and taking one day at a time.
I will continue to follow your posts. You and your family will be in my prayers.
Debbie
Hi Aiste,
Great post, thanks for that. All of the emotions that you feel right now I would say are quite normal and they are all things that we can relate to here. I know that it might not seem like it, but from what you say it does sound like your dad is making good progress from the surgery. It will take time for him to heal from this and it will also take time for the jaundice to recede. It takes time for it to build up and will take time for it to clear up as well.
Feeling sacred is okay I would argue, nothing wrong with that. And a good idea too to not take your son to the hospital right now if it upsets him too much. Maybe wait until your dad is doing much better in the hospital or when he gets home. But your son may surprise you still and want to go back to the hospital after a few days, who knows.
Hoping that your dads recovery continues and please keep us updated on his progress.
My best to you and your dad,
Gavin
Aiste,
Well said. What an inspiring post. We should all heed your advice. I look forward to the time when you are once again taking walks with your dad and listening to those funny stories.
My best to you and your family.
Hugs,
DarlaHello 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!
Aiste, hello and good day, the emotional sensitivity I think is from the i.v. pain medication, I was teary before I went home and I was NEVER like that before, it could also be that you realize your mortality and that is a release, I still cry reading these boards (sometimes even my own when I read them) so this disease is life changing, and he is thinking about sentimental things he hasn’t thought about in a while, it is emotional even for the toughest man ( I am hercules you know and it was hard on me) ha! So be supportive of dad , being cut open, having stuff taken out, being sewn back up makes you look old, go easy on him, he’ll look better at home with his grandson and You, Be patient and take care, Pat
P.S. Best wishes from the other side of planet earth…..Aiste, you are so right, love is the ONLY thing that matters. About the Jaundice the only way I can explain it is that it is like a dye and will take some time to completely go away. IT does not mean he is not doing well, he is doing great! Remember that what he had done is the biggest surgery to the human body and it is going to take time. What is important is that his attitude is so awesome. I feel sorry for your son, how old is he? It is sad but he is learning the most important life lesson there is and eventually it will make him very strong and a caring man.
Our Board is rather excellent, isn’t it! Continue to be strong and your son will follow.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.
Aiste, It sounds like dad is doing well. He seems to have a great attitude and sense of humor. I’m hoping each day will continue to get even better.
Hugs,
Darla
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