October 24, 2009 at 3:04 pm #32291
Hi Gavin, I totally agree with you. The pain is the key in this stage and it is very important get it under control in my opinion.
I said my mom to go to the hospital emergency right now but she prefer waiting until monday and see how the evolution is.
I appreciate your comments very much because i feel really alone in this nightmare.October 24, 2009 at 2:55 pm #32290lainyParticipant
Hello Carlos and welcome to our world. One of very caring and knowledgeable people. You have come to the right place. It sounds as though you have done everything that should have been done right down to switching hospitals. Your mom is going to be tired for a long time, it was a huge surgery. I agree with Gavin that the sleepless nights do make you depressed and slow the healing. I would definitely ask the doctor if you can try something else for pain and sleep. Moms appetite will take some time also to return to normal. And by the way we don’t put time limits on anything. We have some members who refused surgery and after “a time limit” are still around. We like to say you are not born with an expiration date on the bottom of your feet. You sound like a wonderful son and your mom is very lucky to have you. Wishing mom better nights!October 24, 2009 at 2:14 pm #32289
I know all of this is a lot to take in and deal with and take care of your mum at the same time. At least in coming here you are alongside others who are in the same situation as yourself. It may indeed be the case that this nolotin are not strong enough for your mum. I know when my dad came home from the hospital he was only on paracetamol which was then changed to solpadols, 6 a day then upped to 8 a day recently. I’m sure that someone else who knows more about surgery will be able to offer more insight into the pain aspect of this than I can. But if I was in your shoes then I would look to speak to the doctor again to see if there are other options to help your mum with the pain.
Also, as your mum is in pain then this is probably affecting her ability to sleep at nights which also will probably not do her any good with regard to her mood and feeling sad and down. My dad has also gone through these feelings and has felt better once he has been able to get some sleep and get his pain under control.
I know you will do a great job in taking the best care possible for your mum and I wish you both my very best wishes.
GavinOctober 24, 2009 at 1:53 pm #32288
Thanks for your quick answer Gavin.
I think in the hospital she was taking sleep pills for some days.But now, at home she was just prescribed painkiller(nolotil).She returned home two days ago and in that moment when I ask doctor about pain he answered that it was normal.Maybe”nolotil” is not enough strong.IOctober 24, 2009 at 1:39 pm #32287
I forgot to say, you can use the search forum function and the top of the page to look for posts from others members who have posted about their experiences regarding surgery and the after effects etc as that may be of some use to you.
GavinOctober 24, 2009 at 1:03 pm #32286
Welcome to the site, although I am sorry that you have to be here. I am glad that the site has been of help to you so I hope that you will stick around as you will get a load of support and help from everyone here. And your english seems excellent to me!
My dad was diagnosed last year and his CC was inoperable so I have no experience of surgery of any kind so I cant help you with your specific question, but I’m certain someone will be here soon who can help you. I know my dad, like your mum had many sleepless nights and it does indeed make for a long night. He was prescribed sleeping tablets, Zopiclone which sometimes helped him but not all the time. Have you or you mum spoke to your doctor about the pain just now? My dad also gets very tired quite easily now and also spends a lot of time in bed.
My best wishes to you and your mum.
GavinOctober 24, 2009 at 12:28 pm #2805
Hi everybody from Spain;
First of all congratulations for this site.For me it has been very useful from the last august and now it´s time to describe my experience.
My mom is 74 years old very healthy and strong woman without any health problems during her life before this. She has had a very aggressive surgery on October 13th to remove a klatskin tumor type IIIb for 8 hours. To achieve this the surgeon had to remove liver left side and rebuild some artery/vain. As doctor said portal vain and artery were involved. He could remove all “macroscopic” tumor. The bad thing is that he had to remove two positive lymph nodes too and for this reason the prognosis was not good in long term.
Anyway, let me explain you from the beginning:
After a routinely blood test as every year in the last January APL/APT/GGT parameters appeared extremely high (10 times). Her personal doctor told her for another test 3 month later (now, in perspective, I can´t understand this gap). In this second test (May) decreased just a little bit. Then in June she had a ultrasound scan where they saw a bile duct dilatation. One month later she had an scanner and when we went for the results radiologist told us that it was possible that the hipodense damage found ( 25×25 mm) could be cholangiocarcinoma.
After this they sent to her to the general hospital in our city (Bilbao, basque counry) to the hepatobiliary surgery department. There, doctors did her some additional tests during next month (august, September), ultrasound endoscopy , MRI and another scanner in order to a possible surgery. Here they saw some possible vascular invasion. All of this while she did a normal life without any symptoms at all.
But at the same time I had knowledge, from another big hospital 50 km far away, that they had more experience in this disease(liver transplant…)Finally we decided to go there for surgery taking with us all tests and images. In fact surgeon told us that this surgery couldn´t have been done in the first hospital. I said goodbye to my mom at 9 o’clock in the surgery area door and at 12 o´clock surgeon stopped to inform us that he found more than expected from images. He told us that there were two possibilities (I´ll never forget these minutes)
1-Finish surgery without any action and in 48 hours at home. Time left between 6 months and one year.
2-Go on with surgery trying to remove all the tumor but with some risks because vascular invasion and because of two positive lymph nodes maybe prognosis was not different from the first choice but if it was ok always is better election.
We told him for second option and god bless him and at 17 o´clock he told us that what he wants to do he did it.
After some new blood test, ultrasound and scan in the following days last Thursday she returned home until JUST nine days. Doctor told me that because of good evolution it was better continue with the recovery at home.
Now she try to do something but in few minutes she feel tired and prefers to stay in bed. Despite taking a painkiller pillow every 8 hours she has pain in the surgery area and for this reason she can´t sleep and nights make it very long. In addition she begins to feel sad and depressive seeing the impossibility of returning to a normal life at least for now.Not much appetite either
So, I´d like to know your opinion and ask for advices in this situation.
Thank you very much for your help;
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