Topic: Hi my name is Gail

I had an ERCP and they discovered that I have this.  I am scheduled to have a special ERCP at Shands teaching hospital in Gainesville, FL sometime this month.  I will not know what stage I am in until I have it.  They have yet to call me and tell me the date and the waiting is getting frustrating and no one else will do it in FL so I have to wait because my insurance is only good in the state of FL.
I want to thank you for this site because my right side has been hurting and I did not know if it was part of this or I needed to go see my regular doctor.
I have no idea what to expect and no one will tell me so that is why I am so glad you are here.
Until I find out more that is all I can say about myself except that I am a 65 year old grandmother, wife and mother that knows she has a lot of difficult decisions ahead of her.
It is easier for me to talk about it in the third person.
I would like to ask for prayer for my family and myself that we will have the wisdom to make the right decisions on the actions we should take and know when to go to the doctor and which doctor to go to - seems like at this stage until the resuts of the next ERCP they will only tell me their part and I feel like I am putting a puzzle together.
Again, thank you for being here and for the Lord letting me find this site.

Re: Hi my name is Gail

Hi Gail:  Us grandmothers need to stick together! My husband was diagnosed 3 years ago and the first thing I learned is not to sit and wait! If I don't hear from a doctor after a day or so I keep calling until I get a response. It is so unfair to make our people wait! One of the worst parts is the not knowing where you stand. Strange but once you know you feel better in as much as you then know something is being done and if you have a game plan I find that also helps a lot! I would keep calling, and I personally would get a second opinion. When Teddy was diagnosed in one week in which he had all his tests and the next week he was scheduled for his Whipple. We have learned that we have to take things in to our own hands. Be strong and persevere.  You will find strength you never knew existed. Good luck on pushing for what you need.

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.

3 (edited by marions Fri, 25 Jul 2008 14:47:14)

Re: Hi my name is Gail

Gail, so glad for you to have found us.  You will be making the right decisions in re: to your treatment as information is the key and information you will receive plenty of through this board and I am sure by your own inquiries.  You might also want to consider the Moffitt Cancer Center in Tampa as we had several members being treated at the Moffitt Cancer Center.  This is a good time to start collecting your records beginning with the present physician's records and everything accumulating further down the road.  It is adviseable for you to mention this before any procedure anywhere, anytime.  You need possession of your records in order to gather the opinions of other physicians familiar with this cancer as there is such a variance when it comes to the the treatment of Cholangiocarcinoma.  As Lainy had pointed out - be assertive in your request of receiving a date for your ERCP.  Also, I don't know whether you already have another person actively involved in your medical care someone, who will speak for you and who will help you navigate the system or, medical care.  If not, you should definitely appoint such a person, at this time.
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: Hi my name is Gail

Hi Gail.
Welcome to the family (though I am sorry you had to join). The good news is we are slightly less disfunctional than the average one.  I hope you get that staging done soon so that can plan the attack. Best of luck

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hi my name is Gail

Hi Gail,  Just saying hello and let you know prayers are headed your way.  I can only agree with what has already been said at this point in time.  Be persistant and advocate strongly for your appointments and treatments.  Like Marion mentioned, a lot of members have used Moffit Cancer Center and have been happy with their care provided.  This is a great site ready to support and provide you with plenty of first hand information from personal experience and plenty of researching.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hi my name is Gail

Call your insurance company!!! ASAP!!  Some insurance companies have nurse case managment.  When I went through my ordeal, I was assigned one of these nurses at my insurance company and I had DIRECT ACCESS to the insurance company through her.  What we are going through is a VERY BIG DEAL.  I found my nurse at the insurance company helpful.