Topic: Hello. 2 people I know with bile duct cancer.

Hello Everyone!

First I'd like to say how sorry I am that you are all going through this and wish you all the best.

I am here to learn more about cholangiocarcinoma, it causes, treatments, and diagnosis, and to vent! smile 

My mom, age 67, was diagnosed with bile duct & liver cancer in May. I cannot say I was surprised when she told me the doc told her she has cancer. Somehow, I  knew what she was going to tell me. She has been sick for a very long time. She is a diabetic, lost a leg, has heart problems, terrible arthritis, needs another amputation, and lives in a nursing home. She joked one day and said she can't believe after all the other problems she has that would would get cancer on top of it all.

What did surprise me is when I contacted the neighbor next to my childhood home to say hi and she wrote back to say her husband also had bile duct & pancreatic cancer. He was diagnosed 3 months before my mom.

Personally, I do not think this is a coincidence. We all had well water, which turned out to be contaminated for a very long time.  My dad is really upset about that because he blames himself for buying that house, but he keeps saying he would not have bought it if he knew about the water. I just keep reminding him he had no way of knowing, nobody did. I've been telling my doctors about the contaminated water for many years, but they don't know what to do with the info.  (I have been unwell myself for several years now. Undiagnosed. I've had pain and generalized discomfort, kind of a swollen feeling, on my right side abdomen to back area. I'm seriously considering somehow getting evaluated for this.)

My mom started her first chemo a few weeks ago. Gemsar/cisplatin.  I go to almost every doctor appointment with her, and will for the remaining chemo. Actually, there are at least 2 people, up to 7 people, that go with my mom every time.  We joke around and call ourselves her entourage. I always go. My aunt and sister-in-law (such a sweetie) are there often, then my dad, brother, and sometimes the other brother. Sometimes people are crammed into every nook in those offices! The docs have been nice about it, some of the nurses aren't too happy, but my mom is happy so that is all I care about.

Things have been very stressful, as you all know. I also homeschool my child and have 3 other adults that I have to help take care of. I fill my gas tank 3-4 times a week. It will be nice to have a place to vent. I just told my daughter she can no longer take violin lessons or participate in orchestra because there just isn't enough time in a day and I am thoroughly exhausted. That made me really sad because she has been taking lessons since age 4; she's 11 now.

Guess that's it. Best wishes and prayers for you all.

Re: Hello. 2 people I know with bile duct cancer.

Dear Secret Agent, welcome to the best little club in the world that no one wishes to join. I am so sorry to read about your Mom. You are our first Secret Agent (love it) but you will soon find out nothing is secret around here for long including bowels to loosing hair! No inhibitions on this site but that is good as that is how we all help each other best.
I feel bad for your Dad as he is harboring guilt about something no one can do anything about. Best to let go and never look back. It is what it is and he is just wasting good energy. My goodness your Mom has really been through it all, that is sad. What is amazing is that it sounds like she still has a sense of humor and she must be one heck of a strong lady. The other best part is that she has a loving family that really shows her support. The only question I have is can you say where she is being treated?
As for yourself, young lady, I know you have been stressed and busy but you need to get yourself checked out. You will be useless to your mom should you get sick! About your lovely talented daughter can you get someone to take her to her violin lessons? This is a time when you can ask friends and family to help with things like that and it will make them feel good to be able to help.
Please keep us updated and know that you have come to the best place to be for CC.

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 SecretAgent Wed, 07 Aug 2013 13:24:58)

Re: Hello. 2 people I know with bile duct cancer.

Thank you, Lainy!

Lainy wrote:

What is amazing is that it sounds like she still has a sense of humor and she must be one heck of a strong lady.

I think so!

I am the silly one and goof off around her to make her laugh and my wonderful sister-in-law does all the mushy stuff, hold her hand, crying with her, etc. That's not for me. I rarely cry. Haven't yet. My mom is an emotional person so they get along well.

My mom's doctor is in Rochester, NY. I think he is connected somehow with Wilmot, but not sure. She sees him and gets her chemo at a different hospital, but it is all under the University of Rochester.

I thought about asking people to take my daughter to violin, but it is 30 minutes away. I have been asking people to watch her a lot so I can take everyone to their doctor appointments. I don't like to being my daughter into medical facilities if I can help it. She has a lot of anxiety and even sees a therapist for it. When I told her about my mom, her first questions was, "can I catch it?" she is actually happy to take a little break. She's been doing Irish dance this year and the physical activity has been good for her emotionally. Also, many of the people I know are dealing with serious issues themselves, so I don't want to bother them.

As for me, my doc wants me to see a gastroenterologist. He said something about an esophageal ultrasound. Sounds terrifying! I'm a big baby. I had an abdominal CT last year, but even with Ativan, I freaked out and wouldn't let them give me the IV to administer the contrast. So, this will be a very interesting year!

Re: Hello. 2 people I know with bile duct cancer.

Lainy wrote:

You are our first Secret Agent (love it)

Thanks! I use that name a lot. My daughter had a spy party for her 8th birthday. All the kids chose a Secret Agent name. I made ID badges for them that looked very realistic, as well as t-shirts. My name was Secret Agent Cake Baker. My daughter even made a phone message for our answering machine to go with the theme when kids called to RSVP. We kept that message for 3 years because people really thought they were calling the Secret Agent Training Academy and the telemarketers would just hang up!

My daughter is 11 now. My mom has only ever been able to attend 2 of her birthday parties.

Re: Hello. 2 people I know with bile duct cancer.

Secret Agent, LOVE the SPY theme BD Party!  Let me tell you that if you have to do an Endoscopy it is a no brainer. I have had quite a few. They give you a twilight sleep and  you feel nothing! You don't have to be afraid. Sometimes you can have a little sore throat that usually only last a day. Oh, you said Ultra Sound, that is even easier!
I have to chuckle as your Sister-in-law sounds like mine. My husband was Sicilian so of course so is his Sis. We are extremely close, she has called me EVERY day for 2 1/2 years since Teddy Passed. Anyway you know in movies how they show the mourners and there is always one Italian/Sicilian woman crying her heart out even if she didn't know the person who died? That's my sweet  Maria. I tell you she could make a fortune if she did this as a career, she's perfect. Mourner for hire. And yet, she was extremely good at Teddy's Memorial. Well, I am seeing that through everything you do have a sense of humor and honestly that will help you on this nightmare Journey! Be 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: Hello. 2 people I know with bile duct cancer.

Hi, secretagent,
Sorry you had to find us. Yes, I agree that there are a lot of environmental  factors that can contribute to cancer. Someone recently posted that developer (for pictures/printing industry) is being considered and I worked in that industry since 1981. I have had my share of mishaps with developer, so I'm not too surprised to hear. And I believe all of our processed food is a big factor. Fast Food has got to be on the top of the list!
It sounds like you like her team? I don't know how many cc patients they see, so I hope there's at least a few? But with all of her health issues, going somewhere else would probably be tough.
I can also understand your dads feelings. You have to try to get him to understand that what's done is done. There's no going back, so focus on what to do now.
Good luck,

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Hello. 2 people I know with bile duct cancer.

Hi Secretagent,

I'm sorry that you've had reason to come here but if venting and ranting helps then rant away.  I like that you all go en masse with your mum.  We did the same with my sister when she was hospitalised.  It was standing room only in the  relatives room. 

Try to take care of you too.  It's  to easy to neglect yourself. 

X

Clare

In the stars now . . . .

Re: Hello. 2 people I know with bile duct cancer.

Hi Secret Agent,

I love your name btw! Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your mum is going through. She sure has an awful lot to deal with right now doesn't she. Glad though that you have joined us all here as you are definitely in the best place for support and help and I know that you'll get a ton of that from everyone here. And as for venting, you go right ahead and do that as much and as often as you want to. We so know how that feels and what you are going through so vent away as much as you want to.

Thanks for sharing everything that has happened to you all. It sounds like your mum has a great support network around her with her family and friends and that is good to hear as she will need you all there with her throughout all of this. I do hope that her chemo goes well and she handles it well also and please keep us updated on how that goes.

I can understand your dad feeling the guilt about this but none of this is his fault at all and it would be best for him if he could deal with that somehow and drop it. I am sure that you have been telling him and reassuring him that none of this is his fault in anyway. I do hope that he can deal with that part somehow.

As I said, I'm sorry that you had to find us but glad that you are here. If we can help in any way then just ask and we'll do our best to help. Keep coming back here as much as you want to. You are around people who konw what you are going through and we care.

My best wishes to you and your mum and dad as well,

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: Hello. 2 people I know with bile duct cancer.

Thank you, everyone!