There is nothing more traumatising than knowing that the end is near. How do you deal with the situation when you find out that you or one of your loved ones has incurable cancer? Here’s an excerpt from renowned cancer surgeon and author Dr Umanath Nayak’s book Enduring Cancer – Stories of Hope on coping with incurable cancer.
Immersing herself totally in her work was Dr Sabitha’s strategy of coping with incurable cancer. Whatever time was left from her practice was devoted to running free clinics for poor patients through various charitable organizations. All this and the weekly chemotherapy she was receiving ensured that there was very little time for brooding and introspection. It was only after she was admitted to the ICU with pneumonia and her near-death experience that serious doubts crept into her mind about her ability to cope with the issue of dying.
A cancer patient needs to develop strategies for coping right from the time of the diagnosis and treatment until much later, and throughout life. While the initial emotions of fear, anger, shock and disbelief give way to resignation and acceptance, the rigours and side-effects of the treatment process leave very little time and energy for introspection. This is also the time when the patient or caregiver should utilize his extra time and resources to understand and maximize his knowledge of the disease process, the treatment options and results of treatment. This can be achieved either through consultations with doctors, or through knowledgeable family and friends, books and the Internet. Such activity can provide the patient with a useful distraction from the anxiety associated with the disease and also help him play an active role in decision-making when discussing treatment options.
The issue of coping acquires even more significance upon the completion of treatment, irrespective of whether the patient is considered cured for the moment or deemed incurable. Gradually, the patient finds the attention and concern of family and friends, which was heightened during the diagnosis and treatment, diminishing at this stage and he/she now has to deal alone with the issues of recurrence, survival and an uncertain future. The patient’s priorities and attitudes undergo a major change and issues that were so important before the diagnosis of cancer now appear trivial. Many realize the virtues of family, friends and a healthy lifestyle, and learn to relax more, to forgive and to forget. This makes their lives richer. I have had many patients who have expressed that their lives have become better and more fulfilling after their cancer experience. At the same time, there are others who become melancholic and isolated, and post-treatment depression is common among cancer patients. While psychological counselling is beneficial in such cases, due to the paucity of psycho-oncologists in our country, it is left to the individual or a close family member to make a conscious effort to deal with these emotions.
Though many coping strategies are described, ultimately the person has to discover for himself what works best for him. Lance Armstrong, the Tour de France champion, after being diagnosed with and cured of cancer, realized that the best coping strategy to get himself back on track was to put all his efforts into winning the Tour de France once again as a cancer survivor, and he ultimately succeeded in doing so. All of us may not be in a physical and mental shape to do what he did, but there will always be something to do or achieve that can take away the focus from the disease. Randy Pausch, when diagnosed with incurable cancer, decided to put all his life experiences into a final lecture, The Last Lecture—his ‘swan song’ before an august audience at his alma mater. He hoped that this lecture, which was video-recorded, would also serve to help his three children, then young, to glimpse who and what he was once they grew up and wanted to know about their father.
Other coping strategies include keeping communication lines open with close family and friends. It is important to frankly acknowledge the existence of the problem to those close to one rather than keeping it under wraps and joining self-help cancer support groups. Of course, joining a cancer support group can help the patient cope better. Sitting and discussing one’s fears with others with similar apprehensions can give one the feeling that one is not alone. It is similar to the difference between walking alone on a dark street at2:00 a.m.and walking on the same street with 20 others.
Coping issues can be extreme when dealing with incurable cancer, both for the patient as well as for his near and dear ones. Once it is firmly established that the disease is incurable, the natural temptation to take multiple opinions from different doctors and to try experimental treatment strategies without a scientific basis should be curbed as these can only result in the loss of precious time and worsen the feelings of hopelessness and doom. Unlike during treatment, when all resources and efforts are aimed at fighting the cancer, once the battle has been lost and the cancer has persisted or recurred, if no further useful treatment options are available, it is wise to accept the situation and learn to co-exist with the cancer. This kind of peaceful co-existence can continue for months and rarely, for years together, when the cancer, though not cured, remains dormant without causing many symptoms and allowing the person to carry on with his normal day-to-day activities without much hindrance, until such time that the symptoms start predominating.
The issue of death and dying also needs to be addressed openly. It is the fear of death that makes these patients suffer from anxiety and turmoil, and makes them angry, moody and depressed. An open admission of the fear of dying can help cope with this eventuality far better than any attempts to ignore it. As far as the family is concerned, it is important for them to identify some family member or friend in whom the cancer patient can confide and to whom he can reveal his fears and anxiety. It is necessary to show understanding, not sympathy, and false assurances of cures must be avoided. Whatever time is left should be utilized for improving the patient’s quality of life and any cherished dreams should be fulfilled.
Spirituality can also be of major value in dealing with incurable cancer, and introspection into the meaning of one’s existence can provide an oasis of calm for the troubled mind and help deal with the pain and suffering. Spirituality can lead to a state of transcendence and is a useful strategy for coping.
By nature, Sabitha was not a spiritual person and thus could not benefit from spirituality as a coping mechanism to shelter her from disturbing thoughts about her own mortality. Her mother’s presence by her side during those last few months was a great help, her mother being someone in whom she could confide her apprehensions and turmoil. Her primary concern was for her children and how they would manage after she was gone. The son was too young to understand the implications of his mother’s illness, but the daughter, 12 years old then, realized the gravity of the situation during Sabitha’s long stay in the ICU. Though neither parent let her in on what exactly was going on, her mother’s deteriorating condition and the sombre expressions of visiting family members and friends were enough to tell her that her mother was dying. Regardless of the grim situation, she managed to maintain her calm and on one occasion, when some family members broke down on seeing Sabitha’s condition, it was she who reprimanded them and reminded them that this behaviour would in no way help to make her mother feel better.
For her husband, this turbulent period tested him to his limits. He was managing Sabitha and her illness, seeing to her family members, looking after the children, and managing his practice too. Though he knew that Sabitha’s death was imminent, he maintained a façade of optimism before the family members and children. His main concern was that things would become totally unmanageable if he, too, openly acknowledged that she was dying. He never could discuss with Sabitha the issue of her dying and its implications. To keep the flicker of hope going, he experimented with various complementary therapies and faith healing. Only the support of a few close friends who provided him solace helped him to carry on and cope with his wife’s disease and dying.
Dr Sabitha Panda was diagnosed with breast cancer in 1997 at the age of 38 years. After a valiant fight, she succumbed to the disease in 2003.
Also read: War on Cancer
Read another excerpt from Dr Nayak’s book: How Deepa survived thyroid cancer