I was going to do a single post here on “end times”, but I have so much to say I think I will make it a series of posts.
A few years after I had survived my cancer without recurrence, a cancer that I was initially told was untreatable and that most statistics indicated was not survivable, I decided to take on the noble cause of helping others survive my same cancer. I wanted to help everyone beat the odds, help them to stay alive, help them become cancer SURVIVORS. I thought that with enough information and aggressive enough treatment everyone could be like me, alive and cancer free following our devastating diagnosis.
After awhile, though, I had to accept that many I communicated with would not survive our cancer. Sometimes their disease was too extensive for treatment, sometimes it didn’t respond to the best of treatments, sometimes it recurred aggressively after treatment and there were no treatment options left.
On a personal level, I’d had to deal with my own mortality up close and personal after I was diagnosed. I think those of us who have had a cancer diagnosis never again feel invulnerable. We are forever acutely aware of our mortality. We learn of people succumbing to cancer recurrences after five years cancer free. In my case, I’ve even learned of a recurrence of my cancer in an 8 year survivor. We never feel safe again. We can’t go back to our old before-cancer selves, who lived in denial of death, who assumed that someday when our life work was finished and our bodies were old and used and a burden to others we’d just die in our rocking chair, or in our sleep of old age.
After cancer we can no longer can just intellectualize that we will one day die, our pending death becomes a daily emotional reality. We have trouble contemplating a future, making long term plans. We know, we really know, how fragile our reality is.
As an advocate, I couldn’t abandon the people who would not survive and only help those seeking treatment…the cold hard fact was that if I was going to be a cancer advocate, I had to be available to help those who also were succumbing to their disease, who were dying. Every story didn’t have a happy ending. Sometimes even those who fought hard and had positive attitudes and who lived a healthy lifestyle in every way died. Some who were treated with the latest and best and most aggressive therapies would not survive. Even those who were young with small children at home and who had every right to survive lost their battles. I needed to get comfortable with death if I was going to spend time in the cancer community. Death is a profound and common reality in the cancer world.
For 6 months I volunteered at a local hospice. I did respite care and spent time talking with people who were dying. Listening to their fears, reading them books, feeding them when they couldn’t feed themselves, talking to their family members. That experience helped me a lot, it helped me to accept that death is a natural transition in all of our lives, that the transition can be done well, that it can be painless and peaceful. That in many cases death is liberating.
I had to also come to terms with my own feelings about death. I read lots of books about death and dying. A few by Elizabeth Kubler-Ross. I read The Denial of Death. I read books like Final Gifts written by hospice nurses. I read books by medical professionals and clergy who had spent much time with the dying. I read books about heaven written from a religious perspective. I read books about near death experiences. I recently ordered Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life . I immersed myself in literature about death and dying. I had to, cancer kills over 500,000 people a year in the US, and I was communicating with many of those who would become part of that dismal statistic. I needed to learn to accept and deal with death as a reality equal to survivorship.
We all like to read the books and hear the stories of cancer survivors…but many don’t survive. We need to acknowledge that and be there for those who will lose their lives to cancer. They need advocates too.