I'm glad you have done so well. It's interesting how people can look at you and see this "healthy" person. A neighbor told my husband that my cancer must not be that bad because I hadn't lost weight and still had my hair. (No longer have hair but wear a wig in public so they still can't tell). This was during the time of my original survival diagnosis of 3-14 months. Statistic wise we do not fair well, but always remember statistics are for the masses, not the individual. I've way disproved them for me.
It's been 34 months now. Inoperable, stage IV with portal vein and hepatic artery involvement and then "disease progression" in June 11. I have presently been on a clinical trial for 10 months. Before that time I have had radiation with 24/7 5-FU and then 7 cycles of Gems/Cits.
As for work, I quit the best job ever as soon as I was diagnosed. At the time I believed my original survival diagnosis and thought if I could get on disability I would qualify for medicare, which I wanted to be able to go out of network. Found out it takes 2 years on disability before medicare became an option. I've been on medicare (and have another full policy) since Dec. 11.
I was approved for ss disability in 2 weeks. It seems bile duct cancer has been on a "special" list of conditions that get almost instant approval. There is 5 month waiting period before disability checks start, but the waiting period goes back to your first day of not working. At least it did for me. The very important thing is that you have not worked even part time, if you want to apply for disability. Your waiting period will not start until you are not working. After you get on disability they have a work program where you can work part time and still collect disabiltiy benefits.
Some people need to work for various reason. Some for the insurance and paycheck, some for the achievements, mental health reasons, some just to keep things as normal as they can. I personally do not have those reasons and want to keep my stress level as low as possible. I had a wonderful job and supervisor who would have been very understanding, but I want to keep my stress level as low as possible. If I could not do the job as good as I wanted or took too much time off, it would have been stressful for me. I do miss work, but it's nice to sleep in everyday until my body is ready to get up. With this chemo brain now, I couldn't even do my former job )
Wish you the best. God bless. Take care of yourself.