I’ve been recently speaking with someone newly diagnosed, and I was remembering how I felt when I was newly diagnosed. Interesting, someone I think said, “but we all know we are going to die”, as if knowing that was a given. As if knowing I might die was something we all knew every day.
But when I was diagnosed, I was told by a respected cancer center at a major city university hospital that there was no treatment for my cancer. And we know that cancer that is not treated is fatal. My kids were only 10 and 11. That meant I would not be there to see them finish grade school. Not see them grow up, not be there for their first dates, their first boyfriends, learning to drive a car, their first job,marriage if they chose to marry. I would involuntarily abandon my children. What was the worst thing a mother could do….abandon her children. I wouldn’t get to grow old with my husband. He would have to raise our children alone. I wouldn’t go back to school for my Master’s degree, I wouldn’t go on more vacations, I’d have to leave my job. Funny, at the moment I can’t remember where I was working when I was diagnosed, so I guess my job wasn’t really important then. But the sense of impending loss was overwhelming. Though the day before I knew I would someday die, knowing that I likely WOULD die in a limited amount of time was totally different. I remember thinking if I died, those who loved me would lose me, but I would lose EVERYTHING!!! Everything I knew, everything I did, everything I hoped for, everyone I loved.
Facing a potential death sentence is MUCH different from knowing you will someday die. The day I was diagnosed, my “normal” life was gone.
Even when I had some hope, when I was going to get treatment that was 28% successful in a clinical trial, I still had a good chance of not living more than another year or two. I read everything, and for my particular variety of appendix cancer, numbers said it was 90% fatal, some research I read didn’t even give a number, it just said outcomes for my particular cancer, signet ring, was “poor”. The other varieties all had numbers for survival, not mine. Take my advice, don’t look for survival numbers! The truth is that many of the numbers include treatment that only included the removal of the appendix and a hemicolectomy and IV chemo, not the cytoreducation surgery and HIPEC, which has a much better outcome. The number also include some that received no treatment at all.
I think I remember someone telling me I was lucky, because I probably lived everyday like it was my last, appreciating everything and stopping to “smell the flowers”. I did live for awhile like every day was my last, and it is a horrible way to live! Think of your day, thoughts you might have. Your daughter’s birthday is next month, you are going for lunch with a friend next week, vacation in 6 months. You have things you want to accomplish at work tomorrow. We all live assuming and comforted by the fact that we have a future. We look forward to things in the future, we dream. That is taken away when you feel you may have no future.
For a long time I didn’t live every day like it was my last, but I didn’t plan my life beyond the next CT scan, which was in three or six months. After I had a clean CT scan, I could plan my future only until the next one. That was also a difficult was to live. It was a relief when CT scans became once a year.
I did appreciate the milestones I have able to enjoy. My daughters’ graduations from grade, middle and high school, teaching them to drive, being there for first boyfriends. Both have now graduated from college and one has married (I am not a grandmother yet).
I will be a 17 year survivor in May, May 16th. I am not considered cured, they don’t use that word anymore, I am just living in long-term remission from cancer. I remember when I was younger they called cancer cured if you lived 5 years cancer free; no longer, but that’s okay. I no longer get CT scans or see an oncologist. I don’t currently fear a recurrence anymore, I feel I am just as likely to get a new cancer.
You lose your sense of “normal” when you are diagnosed with cancer, but in the end, you can develop a new, and even better “normal”.