Topic: Hello

My name is Sandra Casey Buford and my husband was diagnosed with cholangiocarcinoma in April of 2002.  This diagnosis was  heart-breaking and scary; however I want to encourage everyone to stay the course because when I first started this journey with my husband, web-sites like this one did not exist...in fact there was limited information on the web.  My family devoured the information and resources that were available and I believe that we were greatly helped through a tough time.  My husband was able to live a wonderful life for five years during which our youngest daughter was married in a beautiful wedding, we traveled to Europe several times, and many more memories were created.   In the end Rudy, who was 58 years old, died of an infection (septis) this past February 20th due to complications that could very well have been post-operative.... it was never confirmed because he was too sick for surgery.  My words of wisdom to anyone going through this are:  (1) Always, always get second and third opinions from drs.  (2) Never accept a dire prognosis without exploring all options (3) Don't forego alternative treatment options and nutrition  (4) Push your health insurance provider to give you what you want and need....My husband's original resection surgery at an out of state hospital was denied, but we got a medical doctor to advocate and pushed until they conceded.  (5) Enjoy every single moment of life (6) surround yourself with positive people and engage in up-building experiences (7) Nurture yourself and your family spiritually

Re: Hello

Sandra -

Thank you for your words of wisdom and positive attitude.   My husband Mike, age 57, was diagnosed in January, 2006.  We have a 13 year old daughter, and hope that through Jesus Christ, the Supreme Physician, and his health care team here at University of Nebraska Medical Center, he will be as fortunate as your husband and live to make many more memories for a lot more years.

My thoughts and prayers are with you.  I know that losing your dear husband is heart-wrenching.  Please know that we are all here for you, and will do whatever we can.

Joni

Re: Hello

Hi everyone.
I'm Josef Clahsen, call me Joe.
I'm a few months of being 58 years young.
Noelene and I have been married for 37 years and have two sons, 36 and 34, and two daughters, 26 and 24, one granddaughter, 7, and two sons-in-law.
We're a very close family, due almost exclusively to Noelene's influence.
I love her very much, love my kids.
And they all love me.
They're taking my recently diagnosed CC pretty badly. Especially the almost six months of at times agonising pain I went through before being diagnosed and having a stent put in and being put on MS Contin - 30mg twice daily.
Planned liver resection wasn't viable due to extensive spreading of tumors throughout the abdominal cavity.
I start chemo tomorrow, Austin Hospital - our leading Liver, Pancreas Etc hospital with the hope of improving quality of life and hopefully slowing the cancer down - who knows - maybe shring the tumors.
Embarassing to admit it but constipation a significant cause of pain, bowels just not working properly. Taking Movi Col and lactulose to keep things soft until it "overflows" and "shot out" once or twice a week. Chemo might help a bit there also.
My daughter told me about this site so I had a bit of a browse and decided to join. I'll tell Noelene and the kids about this site, they might find some comfort here.
Thanks for your time, I know how precious that can be.
Joe

Re: Hello

Welcome, Joe!
You sound like a very courageous and positive person - most people who come to this site are family and friends of those with cc (with lots of exceptions, of course!) - because it's so overwhelming when you have this disease to absorb all the information about it and not be discouraged. My own mother never wanted to know what I found out in my research - it was too terrifying for her. She, too, loved her family and her only granddaughter more than anything in the world, so you remind me of her, and I'm rooting for you, as I know everyone on this board is also.

Please tell your family that they can always get a sympathetic ear to listen to them here, and perhaps some answers to their questions. It is very sweet that you're concerned about your family, but you must be a little anxious also, so I hope we can give you some support and hope if and when you need it. It helps so much to be in contact with people who are going through the same ordeals, especially with this rare cancer.

Best of luck to you, Joe - your family sounds wonderful, and very lucky to have you.

- Joyce

Re: Hello

Hi Joe!

I saw that you were in Australia...I was born in Canberra and from there moved to Louisiana and now Alabama. It was a big jump and my parents, who have more clear memories from our life there, have an incredible fondness for anything Australian. So naturally I have already taken a liking to you!

My mom was diagnosed in March '07 at Stage IV, as it spread to her lymph nodes. And here she is, over four months later and her quality of life is great after one completed round of chemo and radiation. She started  chemo again this week. We don't know what to expect but are hopeful. She has already hit milestones that the doctors were unsure of. So there's always hope...

I'm the same age as one of your daughers...just turned 26 in June. So I'm sure I can relate to how she feels. The unknown is so scary and it's hard to see your parent go through this. If any of you want, you can contact me via email at any time.

Good luck to you and my family will be thinking of you.

Abigail

6 (edited by JeffG Fri, 27 Jul 2007 13:48:40)

Re: Hello

Welcome SandraB, Joni,Joe,Abigail........   I.m glad you all found this site as it has been a blessing for me.  Just being able to discuss and share different treatments taken, especially the way everyone deals with the side effects of this horrible disesae.  Managing your side effects plays a big role on how you deal with this cc; mentally and physically.  You really need to make sure you have all medicatios for side effects in place.  Something for nausea, something to help have bowel movements, immodium to slow the bowels, medication for pain, relax in a bubble bath, and exercise even if it's just walking a little each day, a sleep aid to ensure your body gets plenty of rest.  Basically all I mentioned is to ensure your body stays as less stressful as possible and keeps you in a better frame of mind. Positive thinking and listening to relaxation music.  I honestly believe this cc strives on stress and the chemicals we produce from being stressed out.  8 years and 4 months for me now.  It has been quite a roller coaster but just being around to enjoy my loved ones has been worth it!  I can honestly say it has not been easy and all we can do is our best.  The nature of this beast is that it sneaks up on you before you know it.  I strongly believe there is hope of a cure just around the corner.  Irregardless of what stage your at, I've seen some miracles and many new options/treatments that have been extending lives with pretty good quality of life.  At the moment I will start my 5th chemo regimen on Monday.  The last couple of months there have been a couple surprizes of mets to one of my ribs and another to the spine bone but appears 3-D conformal radiation took care of those back door tumors, for now anyway.   Is my fight getting harder?  I would say cc keeps me alert and suspicious and is certainly consistent.  I have been lucky so far not having juandice and requiring stents yet.  Although many members have stents and are doing really good.   God Bless them and anyone dealing with this relentless disease.  Hope is always in the air!!!!!!

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