We just got out of the oncologist office, my mom is being hooked up for the second round of chemo now. The doctor informed us that the nursing home did not do the CA 19-9 and he said he is not happy at all about it. (he's such a nice guy.) aargh! I'm so angry. The nurse from the oncologist called the nursing home on Monday and they said they would do it. More phone calls for me now! Yay. (not)

Oh, and now the fire alarm is blaring in my ear.

Thanks again for letting me vent. I don't want my mom to see me grumpy right now. smile

I hope everyone has a wonderful and blessed day!

Thank you, everyone!

Thanks Everyone! I was able to leave a message for the oncologist's nurse and she called the nursing home and straightened it out. The nurse at the nursing home made it sound like they would be doing a favor to do the blood teat on Monday. Sheesh!

My mom has been there for a long time now. This isn't the first time we are having trouble with this place. It is a county run home, very large facility. It used to be an old county run hospital, now they do rehab and people live there. They even have a section where children live.  Recently, the director got fired. There was a lot of community outrage for some of the issues that became public. Our family is well known at this place because we make a lot of noise. My sister-in-law is not shy to call and complain. The director didn't like her one bit because she called so often to complain. They used to give my mom the strangest meals. Sometimes they would just put one small piece of fish on a plate. Nothing else. Sometimes I wonder if that was the directors doing, or the kitchen staff were just that incompetent.

Lainy, I am so sorry to hear what your family had to go through. That is just so terrible and sad.


(5 replies, posted in General Discussion)

I'll start a list. It seems just about every post has some kind of acronym specific to this forum. (I know all the basic stuff Asa I have been on many other different forums for a long time-cakes, crafts, sewing, homeschooling, etc.)



(5 replies, posted in General Discussion)

Is there a post or sticky that has all the acronyms & definitions that are used on this forum?

I searched but didn't find one.


I just need to vent here.
My mom lives in a nursing home due to her many ailments. She is scheduled for her second round of chemo this Wednesday. The nursing home lost the requisitions for the CA 19-9 blood draw she is supposed to have on Monday, and they have written in their records to do it every two weeks, on a Tuesday. I fought with the nurse yesterday and she is insisting they will do it Tuesday, but thw oncologist said it has to be done 2 days before the chemo, which would be Monday. Argh! Now I have to try to find time to call the oncologist and get the new requisitions faxed over tomorrow morning, but I have to get my car fixed in the morning, then take my aunt to a doctor's appointment.

I'm just so frustrated.

Thanks so much for letting me get that out!

I hope everyone has a great week! smile

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.

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!

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.