January 20, 2017 at 11:17 am #92725
It’s been a long time since i wrote on this site. After my Dad had the metal stent he was doing so well we were signed off palliative care. in october he had a massive bleed from his stomach. i never thought someone could bring up so much blood. Turns out my Dad has another primary cancer this time in his stomach. All blood thinners have been stopped even though the chance of a clot is very great as he has been on blood thinners for over 20 years. On 17th of December he was admitted to hospital with delirium. After Mri showed no signs of brain cancer or a stroke he still keeps having times that he doesn’t even know who i am . We are back under palliative care and they are good but I am worried that my dads abdomen is swollen with fluid and no medical person i talk to seems to care. I was wondering if this may be the cause for his delirium as they don’t know why it is happening. I have read that Cholangiocarcinoma can cause this buildup of fluid. My dad is also starting to have a lot of pain, just not sure which cancer is causing it. The stent is still working well. Any one who can help with knowledge of this kind of fluid build up would be very welcomed. The palliative care nurse just says there are two nasty cancers in there and dismisses that it could be a buildup of fluid.July 19, 2016 at 12:05 pm #92724
Sorry it has taken me a few days to get on to reply. Your father is in good hands at the RAH, with regards to management of the liver related issues. My mothers surgeon (although she is yet to have surgery) is based in the hepatology department there.
If you are in the northern suburbs however and require palliative care treatment there is also the option of going to the Lyell McEwen hospital which may be closer to your home, however they likely won’t have as much experience with regards to cholangio specific symptoms, as they don’t have a hepatology department there.
I hope you dad is doing well.
TiahJuly 18, 2016 at 4:50 pm #92723nancyelisabettaParticipant
I think it’s one of those things that affects everyone so differently so probably impossible to put a time frame on it, but we found out end of August last year when my mother became jaundiced that she had CC. She had a stent fitted (but I found out later that it never really worked properly) and she passed away the beginning of October. She had no pain relief as well, though i am sure there was a lot of discomfort. So for me it was all too quick.
Sending you my very best thoughts and best wishes.
Take care of yourself xJuly 18, 2016 at 5:18 am #92722aussiejanParticipant
I like you am a new member and I am from Perth WA. My mum lives in England and was diagnosed in October 2015. Like your dad my mum has a multitude of health problems which include diabetes, gout, thyroid, heart afribrillation . Mum is only 77 and we did start the battle with chemo which reading this site Mum did not tolerate well but my goodness did she keep trying. I feel that perhaps our paths are similar as we believed Mum is happiest her at home and I resigned my job and have been here on and off for the last 8 months.
We are finding it hard to accept palliative versus curative treatment but that is where we are.
In the last month Mum has found mobility harder and harder and we have a commode now which gave her the confidence to be able to get to the toilet. I am finding with my Mum that confidence in her own abilities is one of our biggest challenges and although we want Mum to be here in her home with Dad and my brother it is not what my mum wants at the moment.
Mum went into the nearby hospice last week for a short stay to get on top of the feeling of constipation (but she is not constipated) and vomiting. We are on top of that but now Mum is extremely weak and I have to accept that Mum would just worry if she felt that way here at home and she likes having a call button and a lady in uniform arrives not a daughter in pj’s!
Mum too has no pain at this stage and not on pain meds , just discomfort.
I guess all I am saying is do not be afraid of hospice care as we are and were , it has actually been the best thing we did and they are so on top of everything and still aiming for Mum to get home asap. Between my dad my brother and I we believe we can do it but mum knows how she feels and we are respecting that.
It would appear CC has its own time frame and we have done seven months here at home, as with you , in the last three months Mum could never be left alone mostly in case she fell.
I hope that your Dad stays pain free and his life continues as normal as possible thanks to the actions of you and your family. Do not be afraid to accept help, we are so grateful that we did.
Love JanJuly 13, 2016 at 10:48 pm #92721marionsModerator
Nicola…Tough to follow the warm welcome extended to you by our great members, but hello from me as well.
I have come to understand that the pattern of decline in individuals at the end of life varies from person to person. Physical as well as cognitive decline may be very from weeks to months. Given the fact that biliary cancers are complex and complicated to treat, I would pay special attention to pain control. It is my opinion that “palliative care” is equal to that of “comfort care.”
Disease progression in extrahapetic (hilar) cholangiocarcinoma patients most often is accompanied by biliary blockage whereas intrahapetic has a tendency to require opioids for pain control. I am not a physician, hence my opinion is grounded in the work as research advocate as well as patient advocate and of course, my husband’s diagnosis and the interaction I had with patients for the last ten years. observing and interacting with patients for more than 10 years.
Most importantly, dear Nicola, when in doubt about anything, call the physicians
Already you are a quite experienced caregiver, your dear Dad is a fortunate man.
MarionJuly 13, 2016 at 9:13 pm #92719darlaParticipant
I’m glad that you and Tiah have connected, both living in Adelaide. I too hope your dad can be kept pain free. He is dealing with so many health issues at this point that keeping his pain under control is important. Interesting that your dad has many issues, but does not suffer from dementia. Mine is physically relatively healthy but does have memory issues. He is almost 90 and currently in a memory care unit. I must commend you and all those who work in and for those in need of this kind of care. You are all angels in my book.
Take care and update us on how your dad is doing when you can.
DarlaJuly 13, 2016 at 6:38 pm #92720
Thank you Darla.
Tiah, thank you for the information on Daw House.
Dad’s doctor is in the Northern suburbs of Adelaide. He is under one of the specialists in the Gastroenterology and Hepatology department at the Royal Adelaide Hospital. As yet he is not receiving any medication for the cancer. My dad is type 2 diabetic, suffers from blood clots so is on clexane. has heart failure so is on furosemide but because of the damage done to his kidneys when his bile duct was blocked he has been taken off other medication that will damage his kidneys further. Its 3.3o am at the moment and I Am up with him now because he can’t sleep because of gout pain in his feet .He isn’t on the medication anymore to relieve this. Because of my Dad’s health and age chemotherapy isn’t an option. My mother died 21 years ago from multiple myeloma. 2 weeks after her first course of Chemotherapy she contracted pneumonia. Because of the chemotherapy the antibiotics had no effect so at the end I sat with her for a week in a room in C6 in the royal Adelaide Hospital watching her die. I really hope my Dad doesn’t have to suffer the amount of pain my Mum had with bone cancer. I work in a secure Aged Mental Health ward and I am just glad that he doesn’t suffer from Dementia as well.July 13, 2016 at 1:38 pm #92718
Nicola, it is so nice of you that you are dedicating your time to be with your father in his time of need. I hope that your work will be understanding of the compassionate needs at this time.
As for the palliative care, it is nice to know he will be able to be in the comfort of his own home for as long as possible, surrounded by loved ones. I’m not sure where your doctor is based, and if you are seeing an oncologist or a palliative care specialist, but I am familiar with the hospice (Daw House) at the Repatriation General Hospital, which is a fantastic inpatient palliative care service, which may be an option if things become to difficult to manage at home at some stage. I understand there can be a waiting list for this though. The hospice is remarkably special because of its “non-hospital” atmosphere, and the staff are also incredible there. Family are also welcome at any time and they have wonderful volunteers doing all kinds of work every day.
Is he receiving any medication at the moment to manage symptoms?
-TiahJuly 13, 2016 at 1:18 pm #92717darlaParticipant
Welcome to our group. I am glad you found us, but sorry you had to. On the positive side, it is good that your dad is not in pain and hopefully that will be controlled with his palliative care. It’s hard to predicted when & how things will progress. The palliative team should be able to give you some help with that. We also have a member who has a list of things to watch for and I’m hoping she will be in contact with you soon and can send that on to you or you could contact her by searching the user list for Lainy and send her a message asking for it.
Hang in there and know that we are all here to help and support you in any way that we can.
DarlaJuly 13, 2016 at 11:36 am #92716
my Dad lives with us so the palliative care will be at home for as long as I can manage. My dad’s Doctor has only just organised for this so our first nurse is coming to see us on Friday. It has been such an emotional 6 weeks with my Dad going from really ill to looking better than he has in a year. Just when i think I can relax for a while he gets a high temperature and the Hospital roundabout starts again. Since the metal stent last Tuesday he has been good. I am still working but I don’t know for how much longer as I have used up nearly all my leave. This week is the first time in 6 weeks I have been able to leave him on his own during the day so I can go back to work.July 13, 2016 at 10:28 am #92715
My name is Tiah and I’m also from Adelaide. So sorry to hear about your fathers diagnosis but hopefully this community can provide you with some information and support. Unfortunately, at an age of 85 it does make it very difficult to give time frames, as each individual’s body will fight a cancer differently, and the spreading of disease varies in patient to patient. If you don’t mind me asking, where is he receiving palliative care?
As Catherine mentioned above I can’t provide too much personal experience regarding the end of life with CC but hopefully many other members can.
-TiahJuly 13, 2016 at 10:14 am #92714middlesister1Moderator
I’m sorry to read about your Dad’s condition, but it is good to hear he is not in pain. And, I’m sure he’s thankful to have you there to watch over him. It’s still a bit early in the US, but I think there will be other members who have been in your position and may have better information on the timing and symptoms.
CatherineJuly 13, 2016 at 7:11 am #12608
Hi my name is Nicola,
I live in Adelaide South Australia. 6 weeks ago my dad was diagnosed with cholangiocarcinoma.
He had a plastic stent put in which cleared the jaundice and gave him back his appetite, but after two stays in hospital with infections a metal stent was put in last Tuesday to replace the plastic one. He is 85 years old with many health problems and is only going to have palliative care from now on. His cancer is in the Gallbladder and bile duct. He has lived with my husband and I for the last 13 years and i am hoping to look after him at home until the end. No one will give me an idea as to how much time he may have left so i was hoping someone can help me. I know noone can know exactly but an estimation time frame from people who have been threw this would help me get things in order. Any information on what it will be like for him as this cancer progresses would also help me prepare myself so I can comfort him in the time he has left. He is in no pain at the moment which is a blessing. thank you
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