Since publishing my web site and contact information in May of 2006, I've communicated with almost 300 people diagnosed with appendix cancer.
There are some things we with appendix cancer are commonly told by those in the general public who learn of our diagnosis. These statements are common ones that have frustrated many I communicate with.
- "I've never heard of appendix cancer, but it can't be too bad, can it? I mean, don't they just remove your appendix? You don' t need your appendix anyway, you'll be fine!"
I tell those people it's similar to ovarian cancer in that by the time there are symptoms and it is discovered, we usually have advanced cancer, it has spread beyond our appendix. We are usually diagnosed at Stage IV, the worst case scenario for a cancer diagnosis.
- "Let's celebrate, you've recovered from surgery and finished chemo! Now you can go back to your normal before-cancer life , the tough part is over!
Actually for most of us, after surgery and after chemo is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.
Chemo and surgery were our tools against the enemy, cancer. Now we are vulnerable and afraid, we know how quickly our lives can change and we don't trust the future anymore. We don't know if cancer is hiding and waiting to attack us again while we are defenseless.
We are kind of in an after-hurricane state. During the storm we fought and struggled and worked to survive, now we are surrounded by the aftermath of the storm, the scattered pieces, the need for reconstruction. We don't know if and when another storm may hit and we can't move to a new state where there are no hurricanes.
In many cases, weathering the actual storm was easier, the clean-up is the hard part. And as in the aftermath of real hurricanes, the clean-up can take years.
- Another sort of frustration many of us have is listening to others say how lucky we are to have received treatment, to have not died of our cancer, to have survived the surgery, survived the chemo. We are expected to be happier, more humble, to have more gratitude, to value our lives more, to appreciate living more than those around us. Aren't we the luckiest people in the world?
It reminds me a bit of the book "Lucky" by Alice Sebold. Alice was raped, but was told she was "lucky" to have only been raped and not to have been killed. We are "lucky" to have not died of cancer. As Alice recounts in her book, many of us struggle with emotional issues long after our "lucky" incident.
The truth is, sometimes we wonder why those who have never experienced cancer-- those who have never had to fight the battle-- don't hold themselves to that same standard, or actually to an even higher one. They've received all of those same blessings without having to struggle or fight or face the storm. They are truly the lucky ones, the blessed ones, we often feel.
It's not that the people around us don't want to understand or try to help, it's just that in some ways they can't relate to us as they haven't been where we are. That's why those of us in the cancer community need each other. My offering my web site to the world has had the great benefit of my being able to give support, but also of my being able to receive support from others diagnosed with this cancer. It's been great, I thank all of you.
BTW, the color for the appendix cancer ribbon is amber (for those who write and tell me how tired they are of seeing pink ribbons :-). One woman I communicate with wants to start making amber ribbons, and if she sends a bunch to me, I will mail them to anyone who asks for free until they run out :-).