Topic: Introduction

My sister just found this site for me.  I was diagnosed May 9 2007 and had 80% of my liver removed on Jun 4 2007 with vein bypass. I am blessed to have the most supportive husband (we got married June 2, 2007!)  daughter, 22 years old, mother and 2 sisters in the world but have never felt so alone in my life.  I have been reading on this site for 2 days and crying for 2 days.  Most of it happy tears that I am no longer alone and I admit my share of sad tears as well as not all ends well for everyone which of course I was already acutely aware of.  I am 46 years old now.  I am having a lot of rib pain and nausea but just had a CT scan which showed  no recurrence to the liver and very small unexplained new spot on my lung.  The doctor wanted to order a PET scan but ins. has denied it.  Frankly I don't even know if the pain is real (it certainly feels real) or not.  I am so worried about recurrence and I have lost all faith in my body since it certainly threw me a zinger with the original diagnosis. Thank you for everone that belongs to this site.  Words can not explain what this means to me.

2 (edited by marions Sun, 24 Aug 2008 04:04:35)

Re: Introduction

Sheryl...congratulations on your successful resection and welcome to our CC family. 
We had similar experiences with denial of scans and so have many others.    When our physician requested a pet scan - which promptly was denied - he then waited a few weeks and ordered a CT scan, successfully.  I am sure for others having tons of information to share with you. So glad for you to have found us.
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: Introduction

Hi Sheryl, I was also diagnosed when relatively young (46) and am now in shouting distance of my 51st birthday. I think being younger puts you in better shape to survive this disease-- at least that's what I tell myself! I understand completely what you mean about not trusting your body, but with time, it gets easier. I think it helps a lot to do whatever kind of exercise you can manage, to make yourself as strong as possible.

And don't keep your fears to yourself. You really need someone that you can tell EVERYTHING to-- if you don't want to burden a family member, then a friend, a nurse, a clergyperson/ counselor. It will help a LOT.

Wishing you peace, hope, and healing!

Kristin

Peace, hope, and healing to all!

Re: Introduction

Sheryl, welcome, and in case you did not realize it, you are already a great survivor!  Everyone on this site is a gold medalist and has learned to fight for what they need. My husband had a PET Scan the end of June and fortunately the insurance company foot the bill! What they turned down was cyberknife  surgery which would have only been a 3 day procedure instead of IMRT radiation which he is going through now and taking 25 days. Such wisdom. There are some very knowledgeable people on this site and do not be afraid to ask any questions. Don't loose faith in your body as it pulled you through a very rough time. Can't tell you why this is happening to so many wonderful people and yet our group is small which is why there is not much being done in the way of research. I would suggest getting busy with other things. My husband has been through hell but at 75 he is still working 3 days a week to keep his mind busy. Glad to hear you have some great support!  Stay strong!

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: Introduction

Thanks for the encouragement.  I work 40 plus a week although it is very difficult now.  I feel I can't slow down for fear of losing my job which of course would mean losing health insurance.  I would have a hard time getting another job becuase I could never pass the preemployement physical. It is sad to mean that I have to calculate these things into my decisions but that is reality.  Many people make a lot of hard decisions based on insurance (or lack of) and work issues.  I try to not be resentful towards my employer because it is not their fault or issue but sometimes I could really use a break but I know better than to ask. Do any of you face similar work issues?

6 (edited by tiapatty Sun, 24 Aug 2008 23:15:29)

Re: Introduction

Sheryl,

I am glad you found this site, welcome to our very exclusive club.

In case you didn't see it, there is a whole section on this board devoted to insurance issues so maybe you can find some good advice there, for example see this post, toward the bottom it mentions qualifying for Social Security Disability:

http://www.cholangiocarcinoma.org/punbb … .php?id=57

I realize now how lucky we were that my Mom was 66, in addition to everything we went through for 8 months, I really don't know that I could have argued with strangers on the telephone about insurance coverage.

Though I don't have experience dealing with the insurance/work issue, there is a pattern here in a lot of posts that greatly disturbs me and speaks to the incredible dysfunction in our health care system. Sheryl, I believe that your youth is working in your favor but it also means you don't qualify for Medicare and have to expend energy working that should be spent recovering. In other words, those who might be survivors are the ones who have to fight the most for treatment. This makes no sense to me.

I know the next administration is supposed to fix the health care system but I can't understand why there isn't something in place for people with catastrophic illnesses that affect their ability to work and why people have to give up their homes and impoverish themselves to get medical treatment. Bankruptcy should not be the prize you get for surviving cancer.

Patty

Re: Introduction

Hi Sheryl,
I'm 45, and also still have to work full time, but I'm also  a single parent supporting three kids who are still at home.  Thank your lucky stars that you have a supportive husband to help you! 

I do like my job, and feel fortunate to have it, but I also feel trapped.  There is no way I can quite my job and look for one that pays more because of the insurance issues. 

I had been looking forward to the time when my three children were out of the house and in college, so I could finally have some "me" time and start my life over.  Now I'm just hoping to see 50.

God bless,
~Lisa

Re: Introduction

Wow Lisa, you are an inspiration.  You Go Girl!  God bless you I can't even begin to imagine what you are going thru.

You and your children will be in my prayers tonight
Rachel

Re: Introduction

Sheryl,
Welcome to our lovely club. I understand the fear and loneliness, despirte having a fabulous husband and wonderful family and friends. Sometimes it just hurts so much. And dont get me started on insurance companies!!! I am an American but was diagnosed while finishing up my PhD in Scotland. I now live with my husband in Sweden and we are sort of stuck here because I wont be able to get or afford insurance in the US with a cc history. Anyway, best of luck getting those scans.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Introduction

I think that you ALL are awe-inspiring. What an honor it is to be part of such a group. Sheryl, welcome to our site. I hope you find comfort and helpful information here.

Bless you all.

Joyce C