betsy

My surgeon told me based on the size of the tumor, I probably had it for 2 years.

betsy

Hi Jessica,
Right after my liver resection, I had a doctor ask me if I knew how deadly cc was and that his aunt died of it. The next time he came to see me, I didn’t recognize him (blame the morphin!) and I told him about this awful doctor who upset me so much and he said, “That was me!” He felt awful and apologized and he turned out to be and still is one of my favorite doctors. I’m not saying that’s the case for the doctor you saw but it’s food for thought. However, I think it’s very wise to get a second opinion.

Betsy

Congratulations Sue! P.F. Changs you said? What a perfect place to celebrate. It’s one of my favorite restaurants….they have a great gluten-free menu.

I’ll add my good news to this post. In January 2012, I hit the 3 year mark for being cancer-free.

Hugs,
Betsy

I was diagnosed with cholangiocarcinoma in 2008. I was terrified when I read the statistics about recurrence and survival rates. The only thing that kept me from total panic were the people on this website. In January 2009, I had a liver resection. Recovering from this surgery took many months and I felt isolated and lonely. Participation on the patient discussion board helped me deal the emotional and physical task of recovery. Becoming a member of the patient discussion board has also given me the opportunity to help others by sharing my experiences. The Cholangiocarcinoma Foundation has been a tremendous source of information, inspiration and support.

Betsy Kubbins

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Hi Shar,
I’ve had external drains for a couple of years. Mine are usually changed every 6-8 weeks. I am given conscious sedation and antibiotics during the procedure. I flush them daily with saline. As far as clothing is concerned, I attach mine with a smaller binder clip to my waistband. I can hide the bags inside my pants as long as they have an elastic waistband. The stitches do hurt while they are healing and I don’t feel very good for the first couple of days. I had a knack for catching the tubing on door knobs and kitchen knobs which is very painful. I can’t sleep on my stomach anymore. The good news is, I haven’t had cholangitis since the drains and I’m forever grateful for that.

Hope this helps.

Betsy

I like this thread. I’ve been thinking about it all day. I would have continued getting annual check-ups. Prior to being diagnosed, I was caring for my elderly mother and we were constantly at the doctor’s office, emergency room or hospital. My mom kept telling me, “Stay away from doctors Betsy. Once they get a hold of you – they never let go and they’ll find something to treat whether you need it or not.” I skipped 2 annual physicals during that time. I would have gone if I wasn’t feeling o.k. but except for some weight loss, I felt fine.

I too would have let friends/family “in” more. I would have had my sister come stay with me. My first surgery, I told everyone to just wait until I was out of ICU and in my room. My last surgery in August, I told everyone to come and had my sister with me from beginning to end. Such a tremendous comfort to me. I’ve turned into the biggest “touchy/feelie” person.

Betsy

lostsoul – when I was diagnosed with celiac, my doctor told me I could never eat gluten again – the villi in my intestines were completely flat. It didn’t take too long before I was feeling much better. I am very careful about what I eat and have become a “label reader”. Anytime I have cheated, I have paid for it by being sick the next day. I too miss all of the yummy foods I used to eat….especially birthday cake! I hate feeling left out of the celebration. However, I have found a gluten free/dairy free brownie mix that is wonderful! So if there is a party, I have something yummy to eat too.

Hope your scan goes well.

betsy