While holidaying at Pukehina beach, I finished reading “Malignant” a book lent to me by a friend, that tells the stories of seven people, all experts in the field of medical ethics, whose personal experiences with cancer showed them how little they understood about what happens when they or their spouse were diagnosed with cancer. Despite years of teaching and writing about treatment decision-making and patient autonomy, these professionals were unprepared for many of the problems they faced and were often shocked by their experiences. Knowing more about the medical system than most patients did not help them when faced with the life-changing words “You have cancer.”
I found much that I related to in the chapters on diagnostic quests and accidents, hearing the bad news, coping with uncertainty, patient autonomy, volunteering for research, resilience and the art of living in remission, the allure of questionable-benefit treatment, cancer stereotypes, cancer and mortality, and survivorship. There were also experiences I did not relate to, but many were nonetheless helpful to me as I navigate my own way through living with terminal cancer.
I then began reading Susan Gubar’s “Memoir of a Debulked Woman” which is an incredibly confronting account of her diagnosis in 2008 of ovarian cancer and the various treatments she underwent. This book is definitely not for the faint-hearted as she chronicles in harrowing detail the elective hell of her invasive cancer treatment. Her “suboptimal” surgery resulted in unexpected and ghastly outcomes, ongoing infections, and months of coping with extreme pain. Her story not only put my moaning about how long it is taking for the wound on the back of my neck to heal in perspective, it also made me feel extremely grateful that I had not been a candidate for Whipple’s surgery, another debulking operation that some pancreatic cancer patients are offered.
Having googled Jenny Diski, author of “In Gratitude,” and discovered that she died in April 2016 soon after her book was published, and then Cory Taylor, author of “Dying: a memoir,” and found that she died in July 2016 soon after her book was published, I was somewhat reluctant to investigate whether Susan Gubar was still alive. Given that most ovarian cancer patients, like pancreatic cancer patients, also do not survive for very long, and it had been four years since her book was published I expected the worst.
However a recent sleepless night found me at my computer undertaking more googling, resulting in the news that not only is Susan Gubar still alive she is blogging for the New York Times with her recent blog dated 26 August 2016:
I then went looking to see if anyone had written a book about their experience of pancreatic cancer, and found Bob Brown’s “The Ride of My Life: A fight to survive pancreatic cancer.” Despite my objections to all the unremitting and unhelpful battle terminology that surrounds cancer patients, I have ordered the book – because Bob Brown died in 2013.