1

(7 replies, posted in Introductions!)

Dear Aiste, thank you as I was wondering how to pronounce your name. It is also close to that good Champagne, Asti. Coffee, never for me can't even stand the aroma.
I see a wonderful attitude change going on here with you! Good girl, attitude is everything! Sounds like Dad is doing well about the surgery as I am with mine. Teddy and I got through the 5 years of CC with humor. We may have cried on the inside but even today I can talk about some things he went through with humor. And me? I crack myself up about me! I look at surgery not as an end but the start to a new beginning called LIFE! I can tell you will be just fine and we are all here for you.

2

(25 replies, posted in Members' Cafe)

OMG, Cuz, you always make me laugh until I cry!!! Don't tell Gavin but if he e mails it to me, I will forward it to you and you can post it on our Board!!!!!

3

(10 replies, posted in Members' Cafe)

Dear Aiste, yes Duke is fantastic and I call him Cuz (cousin) because I wish he was my cousin. You will find that we are all a very close family here, none other like this Board. By the way, I believe you are our first member from Lithuania! See, you are already very special.

4

(7 replies, posted in Introductions!)

Dear Aiste, welcome to our amazing family and the best place to be for CC. I know that many prayers will be going out to your Dad for a successful surgery and to provide you with strength. My husband was 73 when he was diagnosed and had a successful Whipple surgery. Yes, this is a huge surgery BUT not life threatening like heart surgery would be. Dad will be very tired for quite a while and you may notice a change in his eating habits. My husband loved sweets and then had no taste for them. Instead of big meals when he is able, let him 'graze' all day until his system can take more. I am wishing for him to have a smooth recovery. Please let us know when you can, how the surgery went as we all care.  You never know how strong you are until "strong" is the only choice you have!
P.S. My favorite beverage is Iced Tea!

Abby, I would strongly suggest another opinion first so you would go to an Oncologist who in turn would suggest an Oncology Surgeon. You want to make sure this 2nd opinion is given from an ONC who is very familiar with CC as should any ONC Surgeon should be as well. I find it strange that your present ONC has offered no treatment of any kind and you started 6 months ago. If you can tell us where you are located perhaps some members can come along with suggestions of who they have seen. As previously stated you really need to find out if it is CC.

Randi, I am so very sorry to hear about your Father and sorry about Kevin's surgery but glad he is doing well. It is so true that when it rains it pours. I am feeling that you will have all good reports in May because you are feeling too good not to have great news.
I love that you want to open your own office to help others and I know how you feel. I always say I am selfish on this site as I get so much more back then what I am giving.  I know you will do well and people like you are so very needed. Stay well and let us know how your Scans go. Love you!

7

(5 replies, posted in General Discussion)

As I live and breathe, hello, Sally and Sister!! so good to see you and your report is not bad at all.
You know, sometimes you just have to punt with this crazy CC but your attitudes are great and I wish for you 3 Sisters to have a fabulous visit in June. Miss you but I know you will let us know what happens down the road. WIshing you and your Sister the very best!

Hi Randi, girl!!!!  Miss you and thank you for the good wishes. The Rabbi called me this morning and he wants to come say prayers before I go in but I told him I don't want him driving that far (1 hour in rush traffic) and he can come while I am in the hospital. Cute....when T got sick and we were in Milwaukee, our Rabbi called him and said the Sh'ma with him!! I am sitting there at my sons and all of a sudden I hear T saying Sh'ma Israel Adonai ...it was the sweetest thing ever.
I am fine and looking forward to a good rest of my life. This has gone on way to long, but my fault.
Thank you for the post. I hope you are doing extremely well!

Dear Abby, welcome to our remarkable family and the best place for CC support. I think it is time for  you to get a 2nd opinion. First of all you want to make sure that you do or don't have CC. We can only give advice on CC and it seems to me you definitely need another opinion as 6 months is way too long. Make sure you go to an ONC who is very experienced with CC and that he uses a Hospital who has also had experience with CC. Where are you located ? I take it there has been no treatment so far? Not acceptable for what ever it may be. Please let us know what is found out as we are anxious to start helping.

Thank you so much, Elaine. Long overdue is right. 2 years ago my Gastro wanted me to have the surgery and I said not yet, the only bag I want to wear is one I buy at Macy's!  Time has come.

Thank you, Melinda! I should be in the Hospital for 5 days and he said I would be recuperating 8 weeks. Mostly extremely tired. I laughed as he doesn't know me!!!! I will NOT be off here all that time as I could not stand the withdrawal. I have a lot of lost time to make up for. BTW, I take my own advice and am set up for an epidural. I was thinking a tummy tuck would not be bad either. NOT! It is just strange how life works. I am so not afraid of the "bag" as it is so like the external bag I changed on Teddy all the time. Weird. Oh, and I will have my Robin tell Marion when I am all clear so she can post how well I did. Sorry, Marion, I haven't told you that yet!!! Again thanks, Melina but don't over due on the cartwheels!

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(10 replies, posted in Introductions!)

WHAT! Judith, I have NEVER heard of separating a family. This makes me angry and I don't usually get angry. I cannot believe this. Why would your own home not be suitable and you can call in the Mcmillan Nurse which is our counterpart to Hospice. Who is telling you this. Why would anyone keep apart loved ones at this point. Please talk to Dr. Valle about this. Most patients want to go home for the journey. And they do! I hope to read that this is all straightened out as you have to deal with without being told your family will be separated!!!

13

(10 replies, posted in Members' Cafe)

Yeah, Cuz. Sounds good to me! Not to worry about hair loss, bald is sexy!!! And you save on Barbers and Shampoo! I am so happy you had a change of venue and hope it just keeps getting better!

14

(5 replies, posted in Chemotherapy)

Dear Emma, the only thing I can relate to you is that you might want to talk to the ONC and ask him/her to give you an estimate as we never know for sure, on life with and without chemo. It just seems that chemo does not take lives but does not give quality of life. How old is your Mom? My husband got CC at 73 and had so many treatments and surgeries (no chemo) and did make it to 78. His quality of life was not compromised too much except from the CC. He asked the ONC, "If I was your father would you do Palliative Chemo?" The ONC said no. While members on our CC site do not believe we were born with expiration dates the ONC hit it right on. We asked him how long with Chemo and how long without and he said it would buy Teddy a month. Teddy felt it was not worth the side effects and as usual it is the patients decision.
Now keep in mind everyone is different, younger people have better chances. Our Duke is an amazing man with an awesome attitude. Like he said, I have a list of 10 signs before the end.  Teddy followed the list pretty closely. I would email the list if you are ready for it. The end was not scary for me at all as I feel the more one knows what to expect the more ready you become. Wishing the best for you and your Mom.

15

(21 replies, posted in Members' Cafe)

You got it , Darla. Spent 35 years there and I always felt it was the city that time forgot about!

Hi, Donnie. My husband had internal bile stents and also an external bile stent with bag. The internal stents need to be changed every 6 weeks to 3 months whether or not there is an external bag as well. What happened to your stent is just one of those irritable things and they hopefully will be OK now. IF you want an external bag it really is not a problem, I used to change them for Teddy. My only complaint was bile has a vile odor and I was the one who was happy when he was done with those!  Good luck.

17

(10 replies, posted in Introductions!)

Dear Judith, welcome to the best place to be for CC support and welcome to our family. I am so sorry to read about your wife, Mary and yes I have heard of Christie. I am going to refer you to Gavin who is in Dundee as he know much more about the UK than I do.  We are big believers in 2nd and 3rd opinions. Yes, try to get some reading in as knowledge is our best tool for fighting CC. Another important factor is attitude, it is the only big factor as this journey requires  strength and great attitudes. At the top of our page is a Search engine. Just enter a word and many posts will appear on that subject. I am also sending some sites you may find helpful. BRAVO on your marriage! Please keep us updated on Mary's progress, you are not alone as we really do care.


Newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

18

(21 replies, posted in Members' Cafe)

OOPS. I posted but guess it didn't take.

I LOVED Brady Street and I remember Shorewood as a lot of my kids friends lived there. Yes, Rosemary and I had a lovely dinner.
After T passed she, her Teddy and I went to an Italian restaurant. Teddy ordered a huge platter of friend Calamari. I won't eat it nor Roe and he didn't touch it but took it home. When they walked me to my car he said, "BTW that Calamari was for Teddy". What a sweet man. If you Google and look for Glorioso's Italian Market, it will bring back lots of memories!

19

(21 replies, posted in Members' Cafe)

Well, Cuz, I certainly have known some people like that and usually feel sorry for them. However, I believe that everyone is kind and healthy up there.  With one exception, my EX! Who knows maybe he is still caught between here and there. Often wondered what would happen when Teddy saw him! I do know my parents are with him as a Psychic told me, about 2 years ago, that a very attractive older woman with white hair was on T arm! That's my Mom. She just loved him. The women in T family all had black hair....no gray. I guess one day I will know...but not yet. BTW I know T will be with me in the Hospital as when I was there 2 years ago for 2 weeks and almost did not make it (Colitis) he was in my room all night every night. When I would get up to use the bathroom, I would hear the rustle of pristine starched sheets as if there was another bed in my room.  Interesting, even now he only ventures here at night.
Attempting to meet a close friend from Milwaukee for Chinese tonight. Her husband and his family own an Italian market Restaurant downtown . It was deemed a Historical site. If you want to Google Glorioso's Market, fun to look at. His name is also Teddy and he grew up with my Teddy. BTW again, Teddy is Sicilian for Salvatore.

20

(21 replies, posted in Members' Cafe)

Well, that is what I thought. Teddy relocated on December 6, 2010. It seems so long ago! Oh, I don't think it would have been hell, the devil would have been scared of him!!!  LOL   Beside which, he spent his life helping others. When Sicilians migrated from the old country, he would help. When servicemen returned from duty, he would help and on top of that he was a very active Shriner. I don't believe in Hell, I feel sometimes we live it here on earth.

21

(21 replies, posted in Members' Cafe)

OMG! Sorry. I misunderstood your post. When you mentioned doors and hall passes I thought you were talking about Heaven and that is what I answered to. Oh boy, Time to nap.

22

(21 replies, posted in Members' Cafe)

OMG! Gavin, did you remember what T had said or you were just guessing at rocks? That blew me away. For others, I am crazy clean and Teddy always used to say that for my Birthdays he was going to buy me a 50 gallon drum of Windex!
Today is my son's 54th. Not sure when all these years passed!!!!

23

(21 replies, posted in Members' Cafe)

Funny, Cuz, you mentioned that. About 2 weeks before Teddy relocated (how do you like that one?) he had a dream that he was in this huge white house with one long hallway that went on forever. He said everything was white and it was beautiful. And sorry, but the doors to all the rooms were closed.

24

(21 replies, posted in Members' Cafe)

Mucho thanks everyone. Keeping myself busy with Spring cleaning. I LOVE to clean.

25

(1 replies, posted in Introductions!)

Dear Dai,  if the bile stent is plastic it needs to be changed every 6 weeks to 3 months.  It collects sludge and results in terrible infections if not changed.  If he starts running a fever that could mean that the bile stent does need to be changed. I am curious where his surgery was done and have you gotten a 2nd opinion? My husband was 73 when his CC started and he had a Whipple which bought him 5 years. He passed at 78. He went through a lot and I feel had he been any older I would have rather seen him have more quality time and to be so sick for 5 years. The decision is really up to your Father and I am not sure if they would take him for a trial because of his age. You will have to talk to the Oncologist.