Sorry I haven’t been writing as often, life has gotten busy! Mostly school….
I talked to a woman diagnosed with appendix cancer today….she was told she was terminally ill (as I was initially) by a doctor not familiar with appendix cancer. She is devastated as she has four young children. I know of many others who are told the same thing. It’s a common prognostic by those unfamiliar with our rare disease. We ALL need to be seen by an appendix cancer specialists familiar with our disease when we are diagnosed. Usually we have to travel as there are not specialists local to us (I traveled 750 miles). If you are newly diagnosed, PLEASE see a specialist before making treatment decisions! We have to be our own advocates. Many very good surgeons and oncologists just don’t know enough about our rare disease, they don’t see it often. Specialists have seen hundreds of cases. I had an initial “poor prognosis” by one oncologist and terminal diagnosis by another and am weeks away from being 10 years cancer free.
Also, I just communicated with a woman who is a 33 year survivor of our cancer! She’s the longest survivor I’ve known of so far. I asked her to write her survivor story for my web site/blog. I hope she does!
I also wanted you to check out this youtube video I happened upon almost accidentally: Distinction Between Curing and Healing by Michael Lerner PhD. There is a difference, and while we seek a cure, we need even more to be healed. I loved that he dealt with “mental healing”, and that he spoke “the toxic new age idea of keeping a positive attitude when we have cancer”. It is more healing to really deal with and experience all of the emotions we have with our diagnosis, negative or otherwise. When I was diagnosed I got very weary of all of the people who told me I needed a “positive mental attitude” to beat it…it’s not true!! A cancer diagnosis normally comes with a lot of negative emotions. Dealing with them and expressing them is a normal part of our experience. A part of our healing.