At the end of the month I will officially be 6 years post my diagnosis of high grade serous stage IIIC ovarian cancer. WOWEE! I am living with cancer, on Avastin still, and negotiating life in the hopes to share something that will help another sister or sister's loved one through this kind of life.
Thank goodness for social media. I just had my 51st birthday and in the process of thanking people I came across an ovarian sister's "like" on Facebook. I have no idea if that sentence is grammatically correct....ha. Anywhoooo....there was a shared page of one of the best articles I have ever read describing this new era of cancer survivors. We are the ones who are not in remission or N.E.D (no evidence of disease) and we are not in all out battle mode either. We are living with a cancer that can get out of control at any moment yet appear to be mainly stable.
I compare this to be like a passenger in a high speed race car, no control, an excellent driver, but one glitch and it could all spin out of control. I have blinders on so I don't know where the next turn will begin. This creates an interesting kind of life that on one hand quickly rearranges our priorities and on the other creates challenges as to how to actually execute this new plan.
It's one thing to have an epiphany and decide to live a charitable life giving everything to help humanity and it is another thing to do that but constantly endure pain, need treatment and worry about resources. How wonderful it would be to abandon it all and go live my life!
I am tethered to my treatment, but I thank God for that every day. So my way of reaching out abroad is not by travel but via the internet.
This article is important for everyone in this position to read, especially their loved ones. Individuals respond to this situation differently. Our culture is not prepared for the thousands of people living in this "state" when it comes to supportive resources. I just wrote a letter to my congressman about how SSDI and it's antiquated operations have hurt people living with advanced cancer. (I will save you the details now but SSDI has no way to effectively assist people living with advanced cancers who are not yet terminal. To understand this fully I will do a separate post at some point to educate you on the realities of working part time with cancer while receiving SSDI).
Please take a moment to read this beautifully written article. It is inspiring, truly!
THE NEW CANCER SURVIVORS Psychology Today
"This range of emotions—the simultaneous gratitude and dread, the intense awareness of both the exquisiteness and capriciousness of life—may of course be felt by anyone with cancer, from those with the most promising prognosis to those with the least. But for people whose cancer can be explained only as a chronic condition, the inner stew is often far more pronounced because of the sheer length of time they have to deal with it and the utter uncertainty about how it will unfold."
The New Cancer Survivors
Extraordinary advances have turned cancer from an apparent death sentence into a manageable chronic illness for many. But what does it mean to live with a terminal disease...interminably?
By Wendy Paris, published on March 9, 2015 - last reviewed on March 24, 2015Peace and Blessings
God Bless America as we celebrate our Nations's Independence
Denise
aka Servivorgirl