lainy
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Oh, Debbie, that is so beautiful and prompted “happy tears”. What a wonderful young man you have for a son! Thank you so much for sharing that beautiful post.
Dear Stephanie, Welcome to our remarkable family and the best place to be for CC support. So 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 be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results. You are already a pro as you have a plan and a good one at that! Please do keep us updated on your progress as we truly care. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Oh, Matt, how awesome and wonderful! I am looking forward to meeting you in Salt Lake City! What a great story you have and may it continue until you are old and gray like me! LOL
Dear Lynn, Again, I am so very sorry but know that Greg fought a great battle with grace, dignity and yes, humor. I am truly happy that he got to see his boys as I felt that is what he was waiting for. Take care of yourself now and drop in to visit us if you need us or just to say hello! Sending you love from across the waters.
Dearest Lynny, I am so very sorry and please accept my humble condolences on the end of this journey. Please find some comfort in knowing that Greg has ended one journey only to be starting one that will last for eternity until you are together again.
Think of this poem as Greg sending it to you:If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.Dear Tim and Julie, I am sorry to read about Sean’s latest update but the good news is that you seem to have a good aggressive Oncologist. I will be praying for a better outcome.
I believe that Hospice is a great help as it will ease things up for all of you and Sean will be watched very carefully. Please let us know how Sean does on the Xeloda. Many good wishes going out your way!Dear Christina, Welcome to the best place to be for CC support. So sorry to read about the diagnosis of your Mum and that you had to join our elite group. We know that when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that will be very useful in helping you to get through this first part of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 Cholangio.
Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor should mind you wanting more opinions.
Please keep us updated on Mum’s progress and know that you are not alone in this new family.
Dear Bonnie, so sorry again to read about Gary. I don’t know what I would have done without Hospice as they watched, guided, eased up the journey and actually gave us time to just be together. Teddy called it our “honeymoon”. Most importantly is to keep discomfort at bay. I had them bring in a hospital bed and set it up in the living room where it was brighter and airier and they could have more room working around Teddy. It also made things more comfortable when visitors came over. One more thing, the hospital bed makes it easier for a patient to get in and out of bed. Keep on taking each day at a time, remember to be kind to yourself and know that we are all here for you!
Hi, positivity. All I can tell you about is a refusal Teddy gave for chemo. But he was 78 and was told he had about 5 months left after fighting the good fight for 5 years. The ONC offered him palliative chemo and Teddy asked him how much time it would buy him and the ONC said, maybe a month. Then T asked him , “what would you tell me to do if I was your Father?”. The ONC said, “I would not let him do it!”. Decision made and I believe T made the right decision.
Dear Googily, I am so sorry to read about Bill but I guess the idea is to keep on trekking as we never know what new treatment may be sitting around the corner. So glad you met up with KRIS! I love it when family can meet up with each other as it is so very special. I met Kris several years ago and she is so special too. Wishing you and Bill the best.
Dear Tia, you are so right! And may I just add especially if you have 2 Doctors who are not on the same page, get a 3rd opinion.
Please accept my condolences and know that your Mom is in a much kinder and gentler place.
As I sit in heaven and I watch you everyday,
I try to let you know with signs, I never went away.
I hear you when you’re laughing and watch you as you sleep.
I even place my arms around you, to calm you when you weep.
I see you wish the days away begging to have me home,
I try to send you signs to show you, you’re really not alone.
Heaven is truly beautiful, just you wait and see.
Live your life, laugh again, enjoy yourself, be free.
Then I know with every breath you take you will be taking one for me.Dear Patti, welcome to our remarkable family and the best place to be for CC support. You and your husband have got a good fight started against this CC and wishing you much more success. You are already living our favorite words….not only shrinkage but remarkable! The other words are possible resection! Hoping with this New Year you will be sailing along to that goal.
Your post is a great encouragement to others and looking forward to continued good news!
