lainy

Dearest Christina, I am so sorry to read about your Mum. Please know that she is now at Peace and whole again with no illness. In time all the tears will turn to happy tears from wonderful memories.

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 Daisy, I am so sorry that reoccurrence has happened but so glad to hear your Mom is feeling good. And a Cruise on top of that! I know we have had good reports on Keytruda and it is so good that her ONC is willing to be aggressive. If you type Keytruda in to our Search Engine above, posts will appear on that subject, Sounds like you are right on top of things, a wonderful daughter and a great advocate. Wishing Mom the very best on what ever is decided and of course let us know what you do.

Dear Susan, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the CC diagnosis of your husband and that you had to join our remarkable family. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time and kind of like being hit in the stomach with a bat. Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the 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 along with the Hospital for treatment, are very experienced with Cholangiocarcinoma. May I ask where hubby is being treated.

Do not 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.

I want you to know that we have many patients who were Stage IV at diagnosis and ended up with surgery, our favorite word. What chemo is he on? Please do keep us updated on your husband’s progress as we truly care. Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/

Ali, if you Google Blue Scorpion Venom you will find some interesting sites!

Oh, April, what a fabulous report. LOVE the GREAT news! Spring is around the corner and so glad to hear your are springing forward in the right direction. If I could, I would turn cartwheels for you! Keep that great news coming and it was good to hear from you and I can see your smiling face!

Dear Summer, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the 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 along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.

Do not 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.

Please do keep us updated on your progress as we truly care.

Dear Mary, First of all CONGRATULATIONS on your surgery, our favorite word. I too was at the conference and met a Mary from Maryland. Is that you?? It was so fabulous and awesome. Now that you jumped into the pool here don’t be a stranger and please keep us posted on how you are doing. You are a hero!

Dear Christina, thank you for the update on your Mum and so glad that “things” have been started. Please tell her Doctor about the light headiness she is having. Since no treatment has begun that would cause her to feel that way it could be anything. With this strange monster the Doctor needs to be aware of anything different that is happening. What I don’t understand is the length of time elapsing to get a treatment started. When my husband was diagnosed treatment began immediately like in a week. Cholangio waits for no one.
I am happy that Mum is mentally doing better now. It takes some time to get used to this rare and strange Cancer.
As to what is normal? Welcome to your new normal that no one wants to have. The best advise we can give is to just take each day, one day at a time. Hang in and hang on and know that we have had quite a few members here who were Stage IV and are doing quite well. Hope and Miracles!