Dear Hopeseeker, just want to tell you what my Teddy was on when things got bad. He was taking 250mg of Morphine 2 times a day with a breakthrough of 150mg every 2 hours. With that large amount he functioned pretty well although everyone is different. It was the only thing that worked for him. Sometimes it is a hunt and peck method to find the right RX and amount.
There is no reason for someone to suffer in todays market of choices. Something new needs to be done in the way of an RX or the pain can get out of hand. Wishing you and your family the best.

Julie, my little engine that could! I am hoping and praying that you will get over this mountain as you have conquered others. Glad to hear you are getting a break from the big V, you deserve it. Now you can finish up your changing, rearranging buying and selling!! Let's take it one step at a time, I know you can, I know you can! Good luck on the marrow draw. I will be rooting for you in our little corner of the world!

My Dear Sweet Marion, My Mentor, Life Saver and Friend.....I am at a loss for words, I know, not me without words, you know how I feel about you and whatever you need just say those words. As for me I will be praying, sending the best thoughts and what ever else is good for you.

We were pioneers here and with CC that both our husbands had and G-D knows I would have not and could not have made it through those 5 years without your support in every way. Everyone thinks I am so strong but you are the wind beneath my wings! 

Some people in our lives radiate love and shine like the stars, bringing joy and happiness to those around them. You are that wonderful person. Never stop being you! I LOVE YOU!

Dear Jonas, I am so very sorry and please accept my heartfelt condolences. I feel that Myrna will always be around you, just look for her in everything you see.

5

(10 replies, posted in General Discussion)

All I can do is tell you what I did for Teddy. CC has a mind of it's own as you have learned. A patient cannot be made to eat. Sometimes they are just too tired and other times "something" else seems to take over and says...do not eat! As care givers for loved ones this is one of the hardest things to comprehend.
I resorted to comfort foods like pasta, mac & cheese, homemade soups (hard to resist), eggs and etc. I  gave Teddy very small portions. When he would see a plate full of food he could not eat as he would choke up.  Then when Hospice started they recommended a Nutrient shake. We tried several and ended up with Carnation Instant Breakfast-vanilla- and I would blend in a banana. This can take the place of a meal or have it with a meal and even 3 X a day. It has all the needed nutrients and he loved it.
You are also at a point where you have to be kinder to yourself. We all get there. I found  it therapeutic to get in the car and drive around my neighborhood for about 20 minutes and I would put the "MaMa MIA" CD in and sing LOUD until I thought my throat would crack. Know what? I went home after the 20 minutes and was able to resume what I needed to do. I am still amazed I was not arrested for singing so loud!
Teddy had 3 stents going on and they were never considered to have anything to do with food unless they were clogged or had an infection. Since Mom has 2 serious conditions it may not be just the CC. I am wondering if the ONC has suggested Hospice. You know they will come out for a year and possibly you and your Mom could take advantage of what they offer.
I hate to disillusion you but none of us are super heroes. Comes a time we need some extra help too. I know you are a loving and devoted daughter  but you also need to conserve yourself for what may come. Sad but true. And BTW no matter how Mom may talk and feel she DOES know all you are doing for her!

I am so very sorry for all of you and have a suggestion. Hospice may have grief sessions for children. I know many adults who are very impressed with Hospice grief groups. The kids will see they are not alone and would be with others they can relate to. With school on vacation this would be a good time to start. Wish I could help, and if I can think of anything else will chime back in.

Jonas, I am happy to read Myrna is having the drain changed today. These infections can really bring one down and I am hoping that with the drain change and all the meds kicking in that she starts to come around much better. My thoughts and prayers and everything good is sailing out to you and your family. Hang in and hang on CC is always a bumpy ride.

Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then "relocated" 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily  with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem.  But a blood culture is needed.
Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!

9

(7 replies, posted in General Discussion)

Lisa, just checking the boards and saw your note. Wish I could say thank-you for the post but there are no words.
I am thankful I got to be with Kris at the Conference in SLC. She is a true warrior and with grace and dignity and a ton of laughter. I hope that when she sees Teddy he will have a Karaoke mic waiting right beside a beautiful pink Harley. Love to you, my special Cookie!!!!

Dear grsharp, I am truly sorry to read about your wonderful wife. SHe was a true warrior who fought with much grace and dignity.

Dear GSharp, I am so very sorry about your wife as she was a true warrior who fought the great battle with grace and dignity.

If I am the first to go and leave you alone, my dear,
let not your heart be lonely, or in your eye a tear.
Don’t grieve for me, I’m not far away,
with petals of love and tenderness, I pave for you the way.
To join me in eternity, and never again to part.
Grieve not for me, I live within your heart.
Take joy again in living, as in years gone by;
God knows what he is doing, and not to be asked why.
I’ll be waiting for my Sweetheart where skies are ever blue,
with eager heart and open arms for you.
Grieve not for me, my Darling, may faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.

Mary: It was such a pleasure meeting you at the Conference, you are one great lady. Thank you for the post and my greatest wish would be that everyone I have met either in person or on this  Board be healed! Wouldn't that be something!

Marion: Thank you for teaching this 'ole gal, I have learned so much from you and all your hard work to make CC a "household name". I love that you still remember our first meeting and how T reeled in the Doctors!  I am so very proud to call you friend. I swear to relax now and have fun but would love to see you do the same. Like I always say life is for the living. I wish you the very best along with my love to you.

Catherine: I remember when you came aboard and wonder where these years have gone. I know that to be a care giver one goes through a lot of rough spots and my dear got a double dosage. Hope your Mom keeps doing well and wish you and your family the very best.

Darla:  My fellow Wisconsinite, we were not to far apart either with our husbands journeys. Please root for the Packers on here to counter Gavin's Bears! Take care and enjoy your life!

Tia: Thank you so very much. I remember when you came aboard too and not that long ago you were so scared like all of us were but look at you now, a real Pro! Good job and also wish you the very best.

Julie: You know, Sissy, I am always around for you. What would I do without those "LATE" emails at night? Makes getting up so often pleasurable! LOL I found my self with you like 2 peas in a pod. Must have been related in another life. Thank you for your beautiful comments.

Gavin: You know your Momma is not going to leave you, I am always here just an email away. I am living for the day that my Son from another Mum visits my abode. Yes, we will blether and have a cuppa. Also Kisses to your Mum.

Pat: It was so fun and a real honor to meet you at the conference. Mel says hi too. We just have fun and he keeps me very busy. My wish for you is to keep on keeping on and stay as good as you feel right now. I will become a lurker so will not be far away. Thank you too.

Thank you, Karen, and I will pop over once in a while. It was so good to meet you as well. I know that CC.ORG is in such good hands!

It is with a heavy heart and the deepest of feelings that I have to write this letter of resignation to you and the Cholangio Foundation (Board). I feel it is time for me to “retire” from the position of Moderator.

After serving as a Moderator for 10 years it is time for me to cut back on some of my activities. It is not that I feel old at 77 but the last few years have really gotten to me physically and I am pulling way back and trying to find some comfort level.

I know people keep thanking me but as I have said many times it has all been purely selfish. I have been privileged to meet on this site with the most wonderful people in the world. I have not only made many friends, I have gained a Grandson in Iraq, a best friend in Ohio, a Son in Dundee and most of all a wonderful Mentor….Marion! How lucky could I be?   

It seems to me a good thing when one knows it is time to pull back gracefully and I will have so many good memories forever. If you don’t mind I may be peeking in here and there just to see how everyone is coming along.

I wish the very best for the Foundation and I just feel that one day we will all look back and remember that, no cure was a thing of the past.

Please give my good wishes to all the brave warriors I feel so honored to have been among the best of the best.

Love,
Lainy Sardina

14

(7 replies, posted in General Discussion)

Marion, good one, you make me laugh as well! And I know Brigette has showed her funny side as well.

15

(124 replies, posted in Introductions!)

Dearest Tiah, I am so very sorry about your Mum but please know that she will always be around you just in a different way. You are a wonderful daughter and I am sure she is very, very proud of you and the way your love also helped you to walk this journey with her.

I’M  STILL  HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
And you'll see that the face in the moon is mine.
I'll whisper your name through the leaves on the trees,
And you'll feel my presence in the soft summer breeze.
I'm the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, I'm every place!

16

(6 replies, posted in In Remembrance)

My Dear Randi, I am so very sorry to read about Nancy. We have met many wonderful people on here from all over the world and one day I just know we will be reading more successes in banishing CC. What hurts one family member here hurts us all. Thoughts go out to Nancy's family and to you.

17

(7 replies, posted in General Discussion)

Dear Brigitte, I want to wish you the very best results! Usually I cross everything even my eyes but on the 11th I am having my first cataract removed so cannot cross that eye. Hope one eye will help! I will be thinking of you and praying for the best. Actually I think you will feel the spirit from all us on the 11th.

Dear Hopeseeker, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey.
Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
You and she are doing all the right things. Good that she is already grazing all day on food instead of 3 big meals. I am hoping and wishing for her to get a good report on tumor markers.
Please do keep us updated on your Mother-in-law's progress as we truly care.

lOURDES, SO GOOD TO SEE YOUR SMILING FACE ON HERE AGAIN!

20

(12 replies, posted in In Remembrance)

Marion, thanks a bunch, I totally forgot. That will pay for us to cruise where the temperature is 35o!!!!!!!!!!!!!!!!!!!!

21

(3 replies, posted in Introductions!)

Dear Barry,  Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
Please do keep us updated on Colin's  progress as we truly care.

Dear GRSharp. I love this it is both true and so beautiful. Thank you for posting this.

Dear Carmen, please make sure that the patient's Doctor is aware of the saliva problem as he should know about it and would probably know what to do. Best wishes.

24

(124 replies, posted in Introductions!)

Dear Tiah, I am so very sorry to read about your Mum. She is resting comfortably and remember that even though she is sleeping she will feel your touch and soft whisper's of I love you. I personally found that by releasing our loved ones to go to their peace it also helps us to better accept that journey.

25

(12 replies, posted in In Remembrance)

Dear Anna, what a beautiful person you are and I am sure your Dad is so very proud of you! One thing I used to do was to keep our CC books on hand and when going to a Doctor like a GI, GP actually almost any, I would give him/her a book. It is surprising how many are still not in the know when it comes to CC.