February 5, 2015 at 9:40 am #86589
Thank you all. It really does help to know that there is somewhere that I can go and ask questions. My partner leaves for Oz tomorrow evening, so once he can actually talk to his parents face to face, it will help to see what is actually going on. His parents are very self sufficient reserved people, which can make communication difficult. I hope that he can find out all the options for treatment and support while he is there. His Mum is also 86 and sharp as a tack and also very active, but her mobility isn’t so great and his Dad helps her with quite a few things around the home, so we will have to consider that, she also doesn’t drive. However they live in a small country town which I think will give them a good support network.
Lainy thank you for the information. My partner used to live in Italy, so I understand a little of the Sicilian spirit. I will ask for that info nearer the time. I think that the more you know the better and I don’t find it frightening to talk about death. I lost my Mum last August and was able to sit with her when she died, which was a comfort. My Uncle also died in September.
The tumour is around the junction of the bile ducts. As I said, they’ve said that it is inoperable and although I think that a 2nd opinion is a good idea, I’m not sure about how someone of his age (however remarkable he is) would cope with major surgery.
I’m slightly concerned that no-one has spoken about lymph testing.
Gavin, we’re in Glasgow so at least we get Emirates flights direct to Dubai and on to Perth which is a help. It’s all rather surreal at the moment.
Thank you everyone.February 4, 2015 at 9:11 pm #86588gavinModerator
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your father in law and all that he is going through right now. But glad that you have joined in with us all here as you are so in the best place for support and help and will get loads of each from everyone here. I too am in Scotland, in Dundee, born and bred and I can only imagine what it is like for you and your husband being so far away from your family at this moment in time.
As Lainy says, we so understand what you are going through right now and please know that we are here for you. I can still remember everything about how I felt and went through when we got the news that my Dad had CC and not only that, but it was deemed inoperable as well. I’ve never been hit in the head with a baseball bat but hearing this news like I just had been.
Getting that second opinion for your FIL sounds like a great idea to me if you can do so, we are big fans of further opinions around here, especially from those who are experienced in treating patients with CC. Your FIL does not indeed sound like your average 86 year old and that is great to hear! If we can help then we will, all you have to do is ask and we’ll do what we can. we don’t have all of the answers but please know that we are here for you and we care.
My best wishes to you and all of your family,
GavinFebruary 4, 2015 at 8:37 pm #86587kvollandSpectator
Welcome to the best family….one you don’t want to be a part of but are glad you are.
I am sorry to hear about your partner’s Dad and to be so far away, that must be difficult for everyone. It sounds like you have a good support network though.
He does sound pretty healthy for an 86 year old. i don’t know very many that could safely drive that far at that age.
All I can say is maybe a second opinion may be in order. Getting a biopsy can be very difficult and brushings are often inaccurate at best. We did not know for sure if my husband had cancer or not until after his surgery. They were pretty sure he could have surgery on the tumor but we didn’t know if it was cancerous or not until after surgery. There was that tiny hope that maybe they were wrong but after surgery we knew for sure. I didn’t even know what cholangiocarcinoma was at that time and I am a nurse.
Good Luck and keep us posted.
KrisVFebruary 4, 2015 at 5:31 pm #86586
Certainly, Alison. Teddy was DX August of 2005. He had an aborted Whipple and then the real deal Whipple after an awful ecoli infection. He went almost 3 years CC free and it returned to the same place (where the bile ducts connected to the pancreas) and called the Ampulla of Vater. He had radiation to bring down the size of the tumor and then had Cyber Knife (a real miracle) and it returned again to the same area 2 years later. So he had 5 years and yes he was with us but it was very hard on him. I chuckled at your remark about hitting golf balls. T used to go to the golf course and putt balls.
Anyway in his 5th year, June of 2010 we were told he had about 5 -6 months. In July we went from Phoenix to Milwaukee to visit children a week of family at a Lake house. He had made up packages for all the kids and Grandkids (his and mine) it was a glorious week. Came home and just like a split second he started getting very tired and slowing down. The ONC called in home hospice August 18th. Teddy passed Dec. 10, 2010. Like the song says he did it all his way! Now, in the time that hospice was in our home he still was able to go to the golf course and do most of what he wanted to do. He started Morphine in October and they kept increasing it as needed. He was a VERY strong Sicilian in mind and body and never complained but I knew. This is why I say comfort is the bottom line.
Alison, when and if you feel the need I do have a list of Signs that the end is near. I only send it out if you email me. IF and when you are ready for that just click on my name Lainy and it will take you to an email in my profile. Then I will have yours and will send you the list. I am a believer that if we know what to expect it is not as scary. Hope I answered your question. If not just ask away.February 4, 2015 at 4:50 pm #86585
Lainy, can I ask you what your husband’s quality of life was like in those last months and how long he had?February 4, 2015 at 4:50 pm #86584
Alison, we all so understand here what you are all going through. When you first hear CC it takes a while to learn to pronounce it let alone for the diagnosis to sink in. Teddy was also very active and having been so active my help Dad to get through this better. To me the bottom line is comfort. That IS a long trip to take several times a year. I think that is about the same distance as from here to Australia. Hang in, be strong for your partner and once everything has been tallied, fright will turn to fight!February 4, 2015 at 4:38 pm #86583
Thank you, I really appreciate that and I’m sorry about your husband. My feelings are for quality, but it’s not my decision and his Dad will, in the end, make his own decision.
It’s all rather hard to come to terms with, as we saw them when they were visiting the US last August and he swam in the hotel swimming pool and drove few balls on the golf range…not your average 86 year old. He drove himself the 200 miles to Perth for his last biopsy attempt!
I’m just relieved that my other half is going out there to see for himself how things are and we intend that this is one of several trips this year which, at over 20 hours flying time, isn’t an easy trip.February 4, 2015 at 4:26 pm #86582
Dear Alison, welcome to the best place to be for CC support. I am sorry to hear about your Partner’s Dad and Bless him, 86 years old! My husband was 78 when he passed from CC after a valiant 5 year fight. The only advice I want to relay to you is that they should ask whom ever is in charge (ONC) what they would do if Dad was their father and at 86. When Teddy was told he could have palliative chemo he asked the ONC how long it would buy him and the ONC said 6 months. Then he asked how long without the chemo and the ONC said 5 months. Last question was, what would you do if I was your father? Teddy chose quality over quantity. What ever decision is made will be the right one, I can promise you that. Just seems to work that way. Please keep us updated on Dad’s progress. We are one big family here.February 4, 2015 at 10:21 am #10923
My partner’s Dad is in Western Australia and is a very fit 86 year old. In early December we got a call to say that he was going up to hospital in Perth for tests as he was jaundiced.
The results of the tests was an inoperable tumour around his bile duct the size of an apricot. He had a success stent insertion and while they were in the took brushings for testing.
Test results were not conclusive, but suspicious for malignancy.
He was sent for a biopsy on Perth in Jan, but they couldn’t get anything as the stents were in the way…..I’m not sure why they hadn’t worked this out before.
One of the nurses in the GI team in Perth has been amazingly helpful, the oncologist in Bunbury is apparently good, but rude to patients. We understand form the nurse that they won’t try for any more tests, but he has another appointment with the oncologist Thurs/Fri to talk about his options, possible chemo etc.
My partner flies out on Friday to spend a week with his parents and try and support them with any decisions that they make.
One really good things is that one of my partner’s friends is a cancer nurse and it turns out she worked for the oncologist years ago. She is contacting one of her friends in WA who is also a nurse to try and get recommendations for a potential 2nd opinion.
Trying to help from the distance is very hard. There are 2 other brothers, the nearest is a 4 hour flight away.
I’ve read some of the posts on the forum and they have been very helpful.
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