ABSTRACT
Palliative care provides holistic care to individuals in life-threatening or life-limiting conditions. This narrative describes the journey of Kanchan. A strong lady and a doting mother, she came to the hospital by choice, in immense pain and with swelling. Her narrative illustrates how the palliative approach draws out the inner strengths of individuals by focusing on their issues and needs. Kanchan was able to benefit from physiotherapy to reduce the risk of lymphoedema after surgery for breast cancer. Her narrative illustrates how she found comfort and relief, ably supported by the dedicated hospital team. Although a chance encounter led her to the hospital, her story emphasizes the need for greater awareness about palliative services to ensure early intervention.
Discovering the cancer
Ms. Kanchan Kulkarni, aged 60, was diagnosed with breast cancer in 2004. Married and settled in Pune, Kanchan, she was an avid reader of health magazines. She chanced upon an article on how to check for breast cancer. That was when she noticed a pea-sized lump in her right breast. She was certain it was cancer. Although shaken up and stirred, she tagged her best friend along for a checkup. They went to a private diagnostic center for a mammography test. The results revealed breast cancer. For the first time, she experienced fear and realized that this was the beginning of a huge emotional roller coaster ride. She felt her life and her health would henceforth be controlled by others. Whether or not to disclose this to her family members was a huge dilemma, as her son had just gotten married and she did not want to burden her daughter-in-law with the aftermath of the diagnosis.
Managing the treatment
After about 4 months, she managed to tell her husband. At the clinic, her pent-up emotions and trepidations finally gave way to a huge emotional outbreak. The impeding fear of a certain death and the pangs of leaving her husband whose happiness she valued over her own compounded her anxiety, along with the feeling that the treatment might put the stoppers on her usual regimen.
Firming up, she decided to fight this battle using simple measures such as trusting herself, listening to her body, tapping into her own healing power, and, last but not the least, not to be surrounded by others' horror stories and negativity. The doctor advised mastectomy on admission followed by 21 days' cycle of chemotherapy for 6 months. The 6-month period was an extremely troubled phase, as the aftereffects were quite punishing. Kanchan says, “I had to hide my peachy head with scarves and dupattas, as bald heads—especially on women—are an unwelcome emblem of cancer. The same was with my mastectomy. I was not for breast reconstruction or prosthesis, but what I feared was the awkwardness in facing people as even to my own brave eyes, sometimes my chest looks unnervingly odd with a lump on one side only.”
She emerged a winner, as a scan in December 2004 showed that she was free of cancer, but a certain medication was required for 5 years. In 2011, her daughter's marriage was finalized and that was when during self-examination she noticed a lump on her left breast and history repeated itself. Destiny compelled her to hide it the second time for almost 4 months, although she knew of the repercussions. The same round of mastectomy and chemotherapy followed. It was more grueling this time, as she had lymphedema in both arms.
Beginning the palliative intervention
Because of arm edema, she used to wear compression sleeves. Her biggest regret was not being able to wear her bangles. Kanchan faced an arduous task of doing simple tasks such as brushing, combing, and cooking with her swollen arm. That was when the Cipla Palliative Care & Training Centre (CPC) security officer met her at a local temple and seeing her bandaged arms asked her to visit CPC for lymphedema. Her initial thoughts were “Yet another place for treatment.” His suggestions were met with a nod, but deep down Kanchan decided not to venture into a hospital again. Although the doctors had given her a daily regime of exercises, she was not convinced that exercise could reduce her swelling. It took her few days to realize the difficulty in doing ADLs (activities of daily living). Finally she decided to give it a try. Living across the highway, the center was at a walkable distance. Her initial visit was to understand the modalities. The physiotherapist explained in detail about the benefits of a studied exercising regimen. It did take a couple of sessions of counseling with Kanchan before she could start with the regime. Slowly and steadily, she realized the benefits of physiotherapy.
Seeing the impact on her symptoms
The exercise and the use of lymphapress helped her tremendously. She made it a point to come daily. Her swelling in both the arms reduced considerably. An accident during this period resulted in a fracture. She was advised to wear a sling on her right arm for 4 months. Due to lack of exercise, the swelling on her right arm increased considerably and straightening her arm was out of the question. Her implant in the hand was a cause of concern for our physiotherapist to start the exercise. In consultation with the orthopedic surgeon, the physiotherapist took the risk of starting the lymphedema exercises. Accompanied by her husband, she started attending the sessions every day. She had excruciating pain, and the sessions for lymphedema post the accident were painful. The perseverance of the physiotherapist and the dedication of the patient showed excellent results. What was once a tree trunk like an “L”-shaped bracket, as she says, has turned into normal limbs, and she has been able to work with them. She is happy with her independence.
It has been 4 years since she started coming to our center for lymphedema. An active propagator of palliative care and a feisty woman who has defied the odds more than once, she emerged victorious every time. Lymphedema is annoying, painful as Kanchan puts it. “It has become my best friend and worst enemy. I think of it all day long, but I make sure it does not get out of hand, and I take care of it when there are complications.” At CPC, we have a dedicated physiotherapy unit and our job is to inform, raise awareness, and give what practical advice we can, to halt the pain and progression of this disease.
Declaration of interest
The author reports no conflicts of interest. The author alone is responsible for the content and writing of the article.
Acknowledgments
The author would like to acknowledge the support of Dr. Mugdha Vaidya, Consultant Physiotherapist (Cipla Palliative Care and Training Centre), in facilitating the interview for this narrative.