When I was waiting for the nutritionist today, I perused the cancer resources that AZ Oncology has. There is a small office at the end of the building that houses the wig/head wear room, an alternative treatment room and a wall of library information. I spent about five minutes looking for books that pertain to my type of cancer and found nothing. For me, this has become a rather common occurrence. The thing about my cancer: there’s not much info on it. People know about breast and ovarian cancer. They understand colon cancer. Tell them you have an adenocarcinoma on your liver that is possibly a cholangiocarcinoma and you are in for some funny looks. There isn’t any special literature. No people raise money to study your tumor and prevent it. No survivor group exists (which is also a tad concerning when I think about it too long!) You just have this odd ball cancer that doesn’t fit into the mainstream. Yet, you suffer like those with the other cancers. Chemo is just as violent. Side effects will take away your hearing, your appetite and always your ability to lead a normal life.
I guess I have a form of cancer envy. If I had breast cancer, people would be wearing pink ribbons and there would be yearly walks to collect money for research. Leukemia has support groups. Pancreatic and colon cancer have celebrities begging you to support research and get tested. There’s camaraderie among those with similar cancers (though it does extend to all cancer patients). I just don’t seem to have a lot of information on my cancer and I certainly don’t have a survivor I can discuss it with. It can be frustrating and lonely.
As a side note, for those interested in being a chemo buddy I posted the perspective dates of my cancer treatments. Just let me know if you’d like to be there via email or text and I’ll let you know if someone is going with me that day.