I was reminded today of how terrifying it is when you have a family member with a terminal illness, and there is a lack of information (especially accurate information) or advice to help you through the toughest patches. When my husband was first diagnosed with neuroendocrine pancreatic cancer, I was frustrated at how little was known about this lesser known cousin of the “garden variety” (as the surgeon put it) pancreatic cancer.
Pancreatic cancer, in general, is the red-haired child within the oncology field. And yet a new study published online just this month in the journal Cancer Research predicts that pancreatic cancer will be the second deadliest cancer in the United States by 2030, second only to lung cancer. According to Lynn Matrisian, vice president of research and medical affairs with the Pancreatic Cancer Action Network in Manhattan Beach, California, “Overall, the cancer death rate in the U.S. is declining each year, and the numbers of deaths caused by several major cancers such as lung, colorectal and breast are following that trend and dropping. However, little progress has been made with pancreatic cancer, and we’ve known that it was not following that trend.”
The reason it’s not following the trend is due to research funding. It’s simply not hip enough for the fashionable and commercial market of the oncology world.
While I try hard to not resent the huge marketing ploy of the pink movement, I sure wish we’d see more purple: the color adopted by the Pancreatic Cancer movement.
This is WHY I started my blog in the first place. In the hope that it may help others, I feel obligated to share my story and all I learned over the space of my husband’s illness. It’s not a huge cause. It’s just a small cornucopia of one caregiver’s story: trials and errors, things that worked, fears and joys, pain and relief, and all the myriad of emotions that make up losing anyone we love.
I’m sure there are and will be plenty of posts that aren’t terribly well written. Perhaps the posts written on the days that reflect anniversaries, or birthdays, will be sadder than usual. Maybe when I see another line of funding denied to Pancreatic cancer research, my blog will be angrier. In the words of Anne Lamott, “To be a good writer, you not only have to write a great deal but you have to care. You do not have to have a complicated moral philosophy. But a writer always tries, I think, to be a part of the solution, to understand a little about life and to pass this on.” I hope, at the very least, that I pass on something useful, and that you’ll know that I care.
The world of a caregiver is often a very lonely place. While you’ll helping another transform from this life to whatever lies beyond, your own transformation will continue on long after their death has occurred. And in this transformation, I firmly believe you understand more of life, and more of love. You truly learn the meaning of care.