1

(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

6

(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.

7

(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!

8

(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.

9

(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!

12

(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!!!!!!!!!!!!!!!!!!!!

13

(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.

16

(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.

17

(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.

18

(28 replies, posted in Introductions!)

Dear Spokanemom, FANTASTIC news. Looking for more good news in posts to come. News like this makes the whole family HAPPY!

19

(6 replies, posted in Introductions!)

Dear LOU ,  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/ 
There are quite a few Meds for Nausea and perhaps a change would do well for your wife. I know many feel that the more sick you are with Chemo side effects the more it is being effective. SO far nothing has been proven but it is a good thought.
I do want you to know that we have many members here who were DX with multiple tumors and Stage IV and they eventually went on to have a resection after chemo. Hang in and hang on this is quite a ride. Know that you are not alone we are all family here. Please do keep us updated on your wife's progress as we truly care.

Hi, Brigitte, wanted to wish you the very best for next Monday. Just let the tech know that your family here will not accept anything but good news! Yep! If it would all be that easy, right? Sending you all good wishes, vibes and hugs for some great news!

Red, Teddy did not have chemo but after radiation this happened to him. The ONC but him on B12 shots and what a world of difference it made. He had a shot once a month. You might ask the ONC about it and also make him aware of the extreme tiredness.

Dear Sandra, I am so sorry about your Mother and please accept my humble apologies. As to why people do what they do, I am still trying to understand. You just keep on being you and I am sure your Mother is very proud of you, her daughter.

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!

Dear Joe, I am so terribly sorry to read your post about Mom. You are an awesome son as we can tell by your posts and your love and concern for your Mom. Sadly It is normal to feel as you do. Has the ONC recommended Hospice to help Mom and the family get through this journey? They are of great help and they give you the time to spend wisely being with Mom. I am thinking of you often and am sending prayers, strength and love to help you all along. Make the most of what ever time there is and we are all behind you.

OOPS! I should have stated that my post came from Live Strong!

Marion, I could not find anything on our site but did some other searching and found this:
The most important treatment for an allergic or irritant contact reaction to a medical adhesive is to remove the bandage or tape. Gently cleansing the area with mild soap and water is necessary to remove any residual adhesive. If possible, it's best to leave the area uncovered so it can heal. If a bandage is necessary, covering the area with sterile gauze and applying tape to the gauze rather than the skin prevents further irritation. For a true allergic reaction, over-the-counter antihistamines and corticosteroid creams may be recommended. If the skin is blistering or the redness is spreading, it's important to see a medical professional for treatment advice.
Not sure how you keep the gauze on without taping it!?!?!?
There are many types of medical adhesives, so one brand might irritate your skin while another will not. Paper and cloth tapes are less likely to irritate the skin than plastic tapes or bandages.