When I left the hospital after my appendectomy, I began my life as a cancer patient. I wasn’t ready yet to use the term survivor, though I’d been told everyone alive with a cancer diagnosis was now termed a survivor. To me, a survivor was someone who was still alive 5 years later, or who had at least completed treatment. I had a long way to go.
I remember several things about my transition to life as a cancer patient. I remember waking up mornings and for an instant my morning would be normal. Then, once I was more fully awake, I remembered that my world had changed, it wasn’t a normal morning. “Normal” was gone, I had cancer.
I remember feeling so out of place in an oncology office at first, I felt I didn’t belong there. I looked around the oncology office waiting room and saw people who had lost their hair, who were very thin, who looked ill. Was I one of them? I felt a mistake must have been made. I felt great, I felt healthy. I wanted to leave and go back to my normal life. But normal was gone.
I remember hardest part; seeing the pain my diagnosis caused my husband, my kids, my parents, my best friend, my sisters, my in-laws. And I couldn’t make it better, I couldn’t change it. My best friend summed it up best. She called me one day and said she just wanted to hear the dishwasher run. She said she wanted our normal back. She wanted our lives to be the way they were before I had a cancer diagnosis. She said she had been home contemplating my diagnosis and had heard the dishwasher run, and for a minute she felt everything was normal again, everything was the way it was supposed to be. She’d stood and just listened to the dishwasher and remembered normal.
Normal. I mourned the loss of the normal life I had taken for granted. Life had changed so rapidly and so unexpectedly. Would life ever be normal again?
I am also the survivor of a very rare cancer, Merkel Cell Cancer. Upon my diagnosis 16 months ago my doctor cried on the phone while telling me that the pathology was MCC. At the point I decided not to take a local oncology opinion and seek the absolute best treatment I could get. I had to travel to Boston to the Dana-Farber Cancer Institute just to find someone that new anything about this diagnosis. Later returned for a surgical procedure that removed tissue from my wrist to my elbow for a small dime size bump that roared. Later had five weeks of radiation each day of the week.
While trying to find additional information and locate any survivors I could I started a Google Group for Merkel Cell Cancer. Today there are 103 survivors in our small group, worldwide. There are few and far survivors of this aggressive cancer that seldom allows survivors.
My hope for you would be to start a similar group at Google Groups where the indexing and coverage for future searches on your also rare cancer can help many others. The key will be in the selection of the name of the group.
Take a moment to visit our group and see the layout and design. Any help I can provide will be easy on my part.
I am hoping for the absolute best for you and others that follow your path.
George
Group Admin & MCC Survivor
http://groups-beta.google.com/group/merkelcell?hl=en