Topic: Learning new things

Hello to all.  My name is Jeff and here's my story.  I’m the latest person to have to deal with this terrible disease.
Shortly before Thanksgiving 2011, my mother mentioned that she “just can’t seem to eat as much as she used to” and had a strange pain in her upper stomach.  She dismissed it as a stomach ulcer reoccurrence.  Finally, after setting up an appointment to see her doctor, tests were done.  We found out she was anemic, prompting other tests and scans which revealed CC.  It’s a diagnosis that will change your family forever and I started to learn things that no one should have to.
I learned that when a close family member gets cancer, EVERYBODY gets cancer.  It’s on everyone’s mind 24/7 and it never goes away.  I learned about this rare disease and all the different variations.  I learned where the best hospitals were for treatment and their different treatment methods.  I learned all about surgery, chemo and radiation.  I learned how to read lab reports.  I learned what Stage IV means.  I learned what hospital takes what insurance.  I learned what Gem/Cis is and what it does to the human body and all the changes that happen.  I learned about blood transfusions, ports, and the cost of each chemo med.  I got to learn fancy words like extra hepatic, biliary, CA19-9, bilirubin, unresectable, paracentesis, edema and finally hospice.  I learned what is exactly involved in fighting this for 6 months and having the best at MD Anderson and the University of Michigan tell you there’s nothing more they can do for your mother.  I learned how powerful hope is.  I learned what it’s like to have a loved one taken from you, slowly, day by day.
Now, mom sits on the couch, watching TV and trying to be as comfortable as possible.  She’s learning to accept her fate and I’m learning to accept mine.  This is the hardest thing to learn.
Good luck to everyone having to deal with this.  Stay positive and determined.  You just never know what will be your fate.

Re: Learning new things

Hi Jeff,

Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you've joined in with us here as I know that you will get a ton of support and help from our great members here.

We can so relate to what you have said about hearing your mums diagnosis and I went through the same with my dad too. I can still remember the day on hearing this news, felt like someone had just hit me in the head with a baseball bat. And like you have done, I too went through all of the learning of things related to this cancer that no one should have to do. And that is how I ended up here, and coming here was the best thing that I could have done at the time really.

We so know what you and your mum are going through right now. If we can help at all then just ask and we'll do what we  can. I hope that you keep coming back here, we are all here for you and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Learning new things

Jeff... Too many of us have had to learn exactly what you describe so well.  Know that you are not alone. This board is comprised of people in various stages of this disease - those, who have the good fortune of outliving their predictions, those giving it their all to fight the battle of their lives, and those, who understand and accept that hope is the very last things we let go off.
 
My heart is with you,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Learning new things

Dear Jeff, welcome to our remarkable family but sorry you had to find us and thank you for the eloquent post albiet bittersweet. You have come to the right place to advise , ask or vent. Please do keep us posted on your Mother, we truly care.

                                      I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Learning new things

Wow Jeff.

You described what it is like to "T." That's what makes this site so great. Everyone knows how you are feeling and knows the right thing to say, not the wrong thing like the rest of the world seems to do so often. I hope you can find some peace here with the rest of us. I still have so much hope for everyone and as of right now I don't ever want to let go of it. It's what keeps me and many others going. Take care, Jeff and prayers are being said for your dear Mom.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Learning new things

I have been going through the same thing, but only for about 6 weeks now with my father.  I am already very familiar with half of the words you mentioned and feel exactly what you described.  Sending prayers your way for your whole family and especially your mom!!

Re: Learning new things

Thanks for the prayers and best wishes.
My family and I have been given a great gift.  Celebrating one more Mothers Day with mom.  This is my 42nd Mothers Day.  I’ve had plenty of practice trying to find the right present, but this is unquestionably the most important present I’ll ever give her.  After a lot of thought, I’ve decided on one of those digital photo frames, loaded up with all the birthdays, all the trips taken together and all the special days together.  My gift to her is to tell her how great it was to have her here and to remind her of all the good times together.  If I were her, I think that’s what I’d like as a gift.
All the best and good luck to anyone fighting this and for their worrying families.

Re: Learning new things

Jeff, your MOther's Day gift sounds ideal. I wouldn't mind one of those Frames. My son sent me roses yesterday. I told him he is the only man now sending me flowers!
Enjoy your special day with her making even more Memories!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.