I really think there is a need for community in cancer survivorship. Especially in our own appendix cancer community. I did for a very short time join a cancer support group, but I didn’t last long there. The community was mostly women diagnosed with breast cancer. And while I know cancer is cancer and we all shared that, I kind of didn’t fit in. And I’m sorry, but sometimes I have resented the breast cancer community. They have so much publicity and education, have so many fundraising events, have so many research dollars. We with appendix cancer see very little of that for our disease. For breast cancer patients, when one chemotherapy doesn’t work, there is always a new one waiting in the wings. My sister-in-law had stage 4 breast cancer, but her life was extended many years by new drugs that had just come off the pipeline. When one drug stopped working , there was another one that helped. You can also be screened for breast cancer, and breast cancer caught early has an almost 100% 5 year survival. There is no screening for appendix cancer, and if there was, it probably would be hard to get and not covered as our disease is so rare. And our surgeries are much more difficult than mastectomies.
The Heat it to Beat It walk is the closest I’ve felt to being in an appendix cancer support environment.
I would like all of you reading this to think about taking one step further in becoming part of an appendix cancer community. I will speak to and support anyone who calls or emails me, I do that whenever I can. But I also have forums on this site, and they can become an on-line support group for us (we are so rare we will never really find an in person support group). There is one other appendix cancer support group on line, the PMP Belly Button Club. I know those who have liked to be a part of that but sometimes get discouraged at hearing of so many struggles with this disease.
But we can start a support group here and maybe make it a bit different. Maybe we can talk about and support each other in our cancer struggles, but maybe we can also do something constructive. Search for opportunities to educate the public and medical community about our disease, support each other in coming up with ideas for events to support and educate about our cancer. Maybe we can even make it part book club! In my many years as a cancer survivor, I’ve heard of the book Emperor of all Maladies, a “biography” of cancer. I finally ordered a copy. I usually read on my Kindle, but this I ordered hard copy as it may be something I want to highlight. Anyone want to read it with me?
So maybe come aboard and join the forums, introduce yourself and lets have our own unique support group for just us!! Maybe we can even find a way to all meet in person some day! I can rent a shelter at my local fairgrounds and we can have a picnic! I really care about all of you.
And lastly, remember, we are ALL cancer SURVIVORS if we are still living even one day past diagnosis!