Hello everyone
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Dear Aiste,
I am so very sorry to hear this news about your dad and also of the terrible treatment that your dad has had in the hands of that medical team. I agree with Lainy that now is not the right time for letters of complaints as you need to keep your strength. The letters can wait I would argue. Having been where you are now with my own dad years ago I so know what you are going through and how you feel right now. I so wish you strength at this very tough time for you and all of your family and please know that we are all here for you. Thinking of you and your dad right now.
Hugs,
Gavin
Aiste…..my heart goes out to you and your family. Although immensely heartbreaking please try to cherish this precious time left with your dear Dad. Most likely your Dad is aware of gentle stroking and soft spoken words. He will feel your love.
Hugs,
MarionDear Aiste, I am so very sorry to read about your wonderful Dad. There is time later for the letters and just keep track of what happens in chronological order. This happened to me with Teddy when I had to put him in a Hospice facility. For now focus on Dad and Mom. Keep talking to him as the hearing is the very last to go. Gentle touches and I love you’s. I learned that as the body shuts down so does the pain. I am here and sending big hugs and strength to you and your family.
Dear Aiste, I haven’t been seeing any recent posts, and I feared his bile leakage was why, oh I am saddened by this news, I am sorry for all of you. I am at a loss for words, I will pray for you all, Pat
Dear Aiste,
I am so saddened to read this update. It is frustrating to hear when care could have been better. I will be keeping you and your family in my thoughts and prayers today.
Catherine
Aiste,
I am up late here and found your post. I’m just appauled at the poor care your dad has received and yes, you are right…being a good person and being a good doctor are two different things. I’m so sorry to hear about the decline of your dad’s condition and how and why things have gotten to where they are. I’m so sorry you are in the position to have to say good bye to your dad. I wish I could wrap my arms around you, your son and mom and make this all go away.
Prayers….Julie T.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.
Thanks for the update on your dad Aiste and you know you can let off steam here anytime you want to, we’ve all done that here! Glad to hear that your dad is feeling okay and I so hope that he gets back home soon!
My best to you and your dad,
Gavin
Aiste,
Glad that dad is doing OK. Hoping things continue to improve and that he will be home soon.
Hugs,
Darlawhenever 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 Aiste,
I’m sorry to hear that your dad had a bit of a set back with the fistula that they found. Thank goodness it was found so that a course of treatment can be planned. There is a lot of information on here and as Marions said, you will be able to search for specific information through that function.
The reason I have written, after reading your story, is to give you hope. Today is the one year anniversary of my husband’s surgery to remove a large tumor and 55% of his liver and surrounding lymph glands. He has done well and now volunteers at the City of Hope where his doctors have worked miracles on him and so many others. John’s gift is to provide compassion to new patients as he escorts them to their first lab and doctor appointments. They find hope in his story of being so sick and now giving back by helping those who are in the position we were in over a year ago. His surgeon wrote him a brief email yesterday, thanking him for helping his new patients and all of those who walk through the doors of the medical campus. What a blessing it was to find him.
You will have some setbacks throughout your journey, but keeping a positive attitude and maintaining hope are critical. The people on this forum helped me get through some very difficult times a year ago when I was in your shoes.
God bless your dad, mom and your whole family as you progress in your treatment. May God also bless those doctors to whom you have placed your trust… theirs is a difficult job.
MelindaIce tea…..we have reports of waiting it out – the fistula has to heal. But, take a look at some of the previous postings by using the “Search” function, top of page, green bar, and enter the word “fistula.”
Sorry, I would do it for you, but it seems that the new website doesn’t allow us to pass on links. Each person has to obtain his/her own search information.
Hang in there, all surgeries can have complications and most can be corrected or work themselves out on its own.
Hugs,
Marionhello 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?
Ice Tea…..fantastic on the clean margins – definitely something to celebrate.
Physician communication can be a problem anywhere. I believe it is related to the individual’s communication skills and of course, in can be cultural as well. In Germany for example, where I was born, physician interaction with patient relatives is very restricted. And, relatives don’t expect to be involved rather, they await the discharge papers and gain their knowledge through that.
Hugs,
MarionI have a news flash for you Aiste, there are doctors here also that will not talk straight when speaking to the patient, never mind his family or advocate, just ask Duke. Selecting a doctor or hospital is a big part of the outcome, where ever you are. Part of it is Luck of the draw, a great doctors flawless work can be damaged by a nurse or other staff. Doctors can have egos that are bigger than the hospital they work in. The surgeon I had was a leader, a teacher of other doctors,and the project supervisor for this whole job. He was the man in charge, and you could read respect (and fear) in the actions and words of the nurses. They would not do anything without his nod. This was ten years ago, the process worked in my case. Sadly the economics surrounding my case are probably quite different than your father’s. I had medical insurance as part of my job’s pay, it was one of my blessings as I could freely choose my doctors and even now I can , if and when needed, seek treatment anywhere many on these boards have. You seek answers I did not have when I was where your father is. You are all amazingly well informed compared to my family and myself 9 yrs. ago. It is hard for me to understand the process but communication is important. The computer is a great tool, It helps us find information and more, People study this disease , as you have, and in some ways by what you say and by the nature of your questions,you intimidate the doctor making him want to be quiet and recheck his own info. consider that, scary, Pat
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