Living With Cancer: Alone and Ghosted
When my husband, incapacitated by knee surgery, was placed in a rehabilitation facility, I lost my caregiver. Don can no longer drive me to the cancer center or undertake the chores he used to do for both of us, and he must consider his own overriding physical problems, not mine. With the good luck of my relatively stable physical condition, I struggle to meet our basic needs. However, an unluckier member of my support group found herself in dire circumstances after her partner traveled overseas on a business trip.
For her, the replacement of kidney stents was supposed to be a routine procedure, but scar tissue had blocked the ureter, necessitating the removal of the stents instead. Through two holes pierced in her back, interventional radiologists inserted nephrostomy tubes to drain urine from the kidneys into external collection bags. Her teenage son remained with her during the hospital stay and brought her home where she copes with pain and the complexity of dealing with the apparatus.
Both these instances of the temporary loss of a primary caretaker focus my attention on the quandaries of widowed, divorced, separated and single patients. Because cancer regimens require taxing exertions over a long haul, people in treatment cannot survive without assistance — which may be hard to come by.
When the members of my support group and I need to lean on our children and step-children to get groceries or sit through infusions, our dependency breeds guilt at multiplying their responsibilities and anxieties. For as they take care of us, we realize that our job is, or was, to take care of them. The role reversal can feel so unnerving that it becomes inhibiting: At times we don’t ask for help we do need. And of course this same inhibition applies if we have to rely upon older relatives who generally have their own burdens to bear.
During the two weeks my husband resides a few miles from our house, I spend the days with him and the nights alone. Yet waking at 2 or 3 a.m. at home, I am never alone with cancer. Fear lodges with me: It crouches at the side of the bed, placing its clammy hands on my body, panting its foul chants of foreboding into the dark room. “Fear is more pain than is the pain it fears,” Sir Philip Sidney knew. A constant companion, fear has stalked me since diagnosis, but during my husband’s absence it metastasizes to fill the space where he had lain.
It seems doubtful to me that a network of caregiving social services can exorcise this burgeoning nightly specter. At the least, though, cancer centers should facilitate access to transportation — which sounds like a trivial issue but remains a daunting concern of every patient I know, especially those who cannot use public transportation because they are vulnerable to infections or reside in rural areas.
A number of religious and charitable organizations aid cancer patients with grocery shopping, housekeeping, meals, medication management and health care bills. The fees for homecare assistance, offered by numerous agencies, may be covered by some insurance. Patients with certain types of cancer can qualify for social security disability benefits. But I don’t know how to access most of this support and in any case surely it should be funneled to those in economic need.
Several websites — CarePages.com, LotsaHelpingHands.com andCaringBridge.org among them — enable patients to update volunteers on medical news and schedule their supportive activities. Online and face-to-face support groups greatly alleviate my loneliness and provide me indispensable information. All available resources are needed by single and partnered patients since debilitating side effects as well as grueling medical protocols can deplete not only us but also our able-bodied caregivers.
During Don’s recovery, I depend on a circle of wonderful friends to whom I am enormously grateful. Quite a few gratify me with their company or by going on urgent errands; however, I have been shocked by several who have simply vanished. Perhaps my needs seem too pressing or never ending. Maybe these people feel inadequate, frightened or taken up with their own affairs. As troubles mount, will supporters dwindle?
From my reading of patient conversations online, it seems that I am not an anomalous casualty of “ghosting” — a term currently used todescribe the ending of a relationship by an intimate who abruptly cuts off all communications. I guess that means a significant number of cancer patients are doubly “ghosted”—haunted by fear of cancer and by the phantom presence of those who have disappeared.
The distress I feel at the fraying of friendships tested and found wanting by cancer probably should not be compared to the abandonment experienced at the termination of a marriage. Yet it makes me ponder the fact that women are more likely to be separated or divorced after a cancer diagnosis than men.
“If cancer cells were to acquire a slogan,” Dr. Benedict B. Benigno has written in The Ultimate Guide to Ovarian Cancer, “I am certain that it would be divide and conquer!” His motto addresses unregulated cell division as well as the capacity of cancer to divide us from the people upon whom we depend. Misery loves company, but company does not always love misery.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.
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