Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 8-9 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Last Saturday I had a poignant conversation with a good friend of mine—poignant because my friend, at the age of 43, has had symptoms for the past few months that could signify that she,too, has uterine cancer.
She has been “keeping it together” (whatever that means) fairly well, I guess, though I urged her to be more insistent that she have some diagnostic procedures sooner than later. But what made her composure waver during our conversation was her reflection on what this might mean for her husband. He (eventually, with the help of my friend) had been the primary caretaker for his mother, who died of ovarian cancer twelve years after her diagnosis. She outlived her original “expiration date” by more than a decade—thanks, I hope at least in part, to the care of her oncologist, who is mine as well. But the last few years were particularly challenging, and the thought of her husband possibly reliving that again on her behalf, and relatively soon, was what brought my friend to tears.
Of course, I have many thoughts about my friend and her situation; for this purpose, however, I am mindful of how much I depend on my husband for his caretaking in multiple dimensions. Tonight I’d like to describe what his major caretaking duties have involved, and then raise some questions for general discussion.
So far, caretaking for me has entailed comparatively light duty in terms of physical care, although there were some really, really tough stretches in the middle of my chemo weeks that both of us would probably prefer not to remember. The evening after my first chemo, in fact, I could not muster the energy to walk up the stairs to our bedroom, so I slept on the futon in our living room—while my dear husband slept on the floor next to me. I am still deeply touched by that gesture.
Caretaking has also involved accompanying me to my doctor’s appointments and to many though not quite all of my chemo sessions, and then discussing at length the treatment options I may have. I write this in rather dispassionate terms, I realize, but naturally some of those conversations have been very, very difficult. This is scary shit for both of us, most of the time, and as detached and enlightened as we try to be, the possibility of my death occurring in the next few years is incredibly hard for us to assimilate. (This may be an awkward place to ask you to jump past the squiggle, but I’m doing it anyway.)
Today, since we finally filed our 2010 tax returns (our first as a married couple), I am especially aware of the financial caretaking my husband has assumed on our family’s behalf. I have been fortunate enough to qualify for SSDI, given the severity of my diagnosis, and those modest but still essential benefits started last month. Still, my own contribution to the household income has dropped by 2/3rds, and our expenses are climbing steadily. In January, we’ll have to start paying health insurance premiums out of pocket. Bravely, and without complaint, my husband has been working his four or five part-time jobs to keep us afloat. He has a post as a church musician; he teaches as adjunct faculty at a Research I university; he directs two community choirs; he composes on commission and writes on conducting and musicology. He is prodigiously productive, but I do worry that he cannot sustain this pace.
I know that not everyone with cancer has a spouse or partner to fill the role of primary caretaker. On these boards and in other venues, I’ve encountered people who get by with the help of children, other relatives, or close friends. I’ve known a few people who appear to have a very sparse support network, and my heart goes out to them for the work that they must then shoulder on their own behalf. I must note that my older daughter has filled in at crucial moments; I know that some of those times have also been very difficult for her. I have several friends as well--including the one who might have cancer--who have been extremely thoughtful and solicitous, and for their love and support I am also very grateful.
My question for general discussion this post is this: How can we, the people with cancer, lighten the burden (if at all) for those who care for us? Saying thank you, as often and as sincerely as I do, hardly seems to be enough.
I do hope it’s clear that I’m not asking out of an interest in eliciting guilt. Perish the thought! Rather, I’m seriously interested in hearing from caregivers about what has helped them, and from people with cancer who might have some insights to offer as well.
Thank you all for participating as you can. I’m still looking for other diarists for the series, so please don’t be shy. This might be especially useful if I go away for a dietary detox, a plan I am contemplating soon. Maybe that will be the topic for my next diary~!