Susan Gubar writes about life with ovarian cancer.  I had to take my husband back to the hospital for a second operation on a torn tendon, but the pills from the cancer trial had not yet arrived. Surely doing without one or two days of the drug would not necessarily lead to a recurrence, I told myself in an effort to still rising waves of anxiety. There were more pressing matters to attend, namely righting wrongful care.  Two weeks earlier, a fall on the basement steps led to an operation on Don’s knee. The surgeon called it a success and sent us home. After I wrote an essay about my welcoming the prospect of caring for my beloved caregiver, the first reader responded: “No one has training in these tasks, especially families who are too emotionally connected to really be effective.” A nurse judged our being entrusted with home care “dangerous.” They were both spot on.  The first night home in a brace, Don’s leg buckled beneath him and he fell again. At the ER, he was given a longer brace. However two arduous weeks later — while we thought the knee was healing — the orthopedic surgeon explained that the tendon had torn again probably because of that fall two nights after surgery: Don would need a reoperation.  Why was my 87-year-old husband not directed to a rehabilitation center with physical and occupational therapists? Despite his desire to return home and my desire to help him return home, we had neither the skill nor the equipment to provide him the support he needed. Do surgeons not understand the debilitating consequences of surgery — especially for older patients? Since Don has always fended for himself and since we had managed a large portion of my care after surgeries, he assumed he could manage with my help. We should have been advised otherwise.  As I packed for a return trip to the Bloomington hospital, my panic about the pills started to peak. During the two weeks of intense caregiving, I had been unable to travel to Indianapolis for the blood tests that allow my oncologist to dispense the experimental drug I receive in a Phase I trial. However, Dr. Matei and her research nurse maneuvered around the constraint by faxing orders for tests in the local hospital. If the results were O.K., the medication would be mailed to my house.  While a nurse in Bloomington hospital accessed my port for a CBC, I explained that the trial also requires other markers. She phoned Indianapolis, got no response, and therefore de-accessed the port. But on the ride home, I received a call from my Indianapolis nurse: The order had been garbled. Could I return to the hospital? I did; the port was accessed again; the markers recorded.  Both Don’s plight and mine reminded me that patients and caregivers bear a heavy burden of responsibility for our own treatment. Several years ago, I recalled, Don had to empty, measure and record fluids from drains I could not reach and then re-bandage the area around them. Later I had to learn how to inject myself daily.  Whether we are suddenly incapacitated, like my husband, or dependent on recurrent interventions, like me, patients are expected to be resilient and resourceful. Yet with very short hospitalizations, patients cannot be resilient or resourceful if we are too ill-informed, disabled, isolated, inarticulate, impoverished or weak to help ourselves.  Just as Don and I were about to leave for the hospital, a FedEx driver delivered the package containing a month’s worth of my pills and I received an email from my oncologist, putting our troubles in perspective. Dr. Matei commiserated about Don’s plight, and then added “Fortunately, it seems like something that is fixable.”  The message from Dr. Matei — who must often address the unfixable conditions caused by the deadliest cancer afflicting women — persuades me that we should fix a health care system that provides brilliant surgeons and researchers but often leaves post-operative and post-treatment care to the catch-as-catch-can devices and improvisations of patients and their domestic partners.  I have become especially convinced of the importance of rehab because my husband — now in a heavy leg cast — has been sent this time to a facility where he receives excellent support from occupational and physical therapists. These professionals supervise strengthening exercises, help him pivot from the bed to a wheelchair, improve his balance on one weight-bearing leg, and instruct him on how to take a few steps with a walker.  With their diligent aid, I try to boost his spirits without fulminating too frequently against a frayed post-hospital safety net. The ingenious regimens offered orthopedic patients focus my attention on the absence of different but comparable forms of rehabilitation in oncology.  At one point or another during and after radiation and chemotherapy, the women in my support group have needed physiological, psychological, dietary, cognitive, sexual, child-raising, financial or housekeeping guidance that none of us received. Of course we address these matters among ourselves, but why don’t cancer centers provide professionals to advise us? If nothing else, such supplementary counseling would give cancer patients the boost of knowing that we are doing what we can to help us cope with difficult circumstances.  For more fitness, food and wellness news, “like” our Facebook page.
Great medical care doesn’t matter if doctors and hospitals fail to adequately advise and care for patients once they leave the hospital, writes Susan Gubar in Living with Cancer.