The world is a stage and we can sit in the audience or we can be the character most beloved by that audience. The choice is ours and while I don’t want the leading role in any production, I will make my voice heard in the choir.
Below is my personal observation on the death of Stuart Scott in the appendix cancer world:
In the USA, we tend to idolize those in the public eye – especially actors/actresses and sports figures. Stuart Scott, sportscaster, while fighting a debilitating appendix cancer owned up to the fight. He received wide praise for his willingness to work through some awful treatments and get back on the set as soon as possible following surgeries. In the appendix cancer and pseudomyxoma peritonei communities of which I am a part, there was a profound sadness that he didn’t bring more awareness to the disease. Since my husband, Keith Surges, very recently passed away from the very same disease, I can understand why someone would want to sit in the audience.
Stuart Scott was first and foremost, a dad. And second, he was in the public eye. Everyone wanted a piece of him, especially his sports network followers. If he had embarked on raising awareness it would have taken away more precious time from his family. It was the one thing he was able to keep somewhat private – for himself to share only with his children and those in his inner circle. His privacy with it was the one thing he DID have control over.
I don’t believe that because a person is in the public eye it is their duty to raise awareness for anything. To be an advocate or a voice for something means it is important to you deep inside. What appeared to me to have been important to Mr. Scott was not his cancer, but his life and his privacy. I think the public outcry in the sadness of his passing allows those of us who want to raise awareness the foundation on which to start. And I hope by doing so, the focus is put back onto awareness, not the passing of a well-known and by all accounts, deeply loved man. I too lost someone that falls into that very same category of being loved and respected, but known not to the world. I aim to change that!
There are some fantastic organizations out there that are doing amazing things for research, advocacy and awareness in the appendix cancer world … the www.pmpcure.org (intercontinental research, advocacy and awareness) www.BeUninTIMidated.org (research funding, awareness and advocacy) and www.pmppals.net (awareness and advocacy). All of these organizations were started by patients while fighting the same disease as Stuart Scott. These are the people that want to help others. I’ve seen in our own community of patients, friends of mine, who are willing to put themselves out there after misinformation about appendix cancer is given by the media in reference to the passing of Mr. Scott.
These people, the patients and their caregivers, are the real heroes in my eyes. Stuart Scott had some very inspiring words to share with the world in his fight. While I could never and would not ever, discount any lasting mark that Mr. Scott left on this earth, and the sports world will no doubt miss his incredible presence, it is not up to the “superstars” to advocate and change what we believe needs to be changed. That change must come from within ourselves by speaking first in our own communities and then by embarking on larger scale awareness as it fits into what is in our hearts.
Appendix Cancer adenocarcinoma is as deadly as is its counterpart, Pseudomyxoma Peritonei – but it’s treatable and curable by a surgery called “cytoreduction” and an ensuing “HIPEC” which is a heated chemo bath given during the cytoreduction. Sometimes, depending on pathology, systemic chemo can help prolong life or even shrink some tumors allowing a patient to become a good candidate for the surgery. You can Google either one of those terms to get a better understanding. If the pathology isn’t extremely aggressive as in my own husband’s case, and the disease hasn’t progressed too far making the patient inoperable, and people get to the proper surgeons who perform these complex surgeries as soon as they are diagnosed, it is curable. It is definitely NOT a one size fits all disease and it does not discriminate. I’ve always said in this community that every body is different but everybody is the same.
If this disease has affected you personally, sometimes the best thing you can do is fight to stay alive and there is no room for anything else. However, in our case we felt strongly about something – awareness! So Keith did all he could do to fight until the end and he did what he could to help others. My husband and I have been very forthcoming about his disease. That was important to him and it continues to be important to me.