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PATIENT/CAREGIVER CORNER
Year : 2022  |  Volume : 5  |  Issue : 1  |  Page : 88-89

Caregiving: A journey unacknowledged


Out patient room number 304, Homi Bhabha Block, Tata Memorial Hospital, Mumbai - 400 012, Maharashtra, India

Date of Submission17-Jan-2022
Date of Decision25-Jan-2022
Date of Acceptance26-Jan-2022
Date of Web Publication31-Mar-2022

Correspondence Address:
Vandana Mahajan
Out patient room number 304, Homi Bhabha Block, Tata Memorial Hospital, Mumbai - 400 012, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/crst.crst_29_22

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How to cite this article:
Mahajan V. Caregiving: A journey unacknowledged. Cancer Res Stat Treat 2022;5:88-9

How to cite this URL:
Mahajan V. Caregiving: A journey unacknowledged. Cancer Res Stat Treat [serial online] 2022 [cited 2022 Jul 1];5:88-9. Available from: https://www.crstonline.com/text.asp?2022/5/1/88/341247



It is not how much you do, but how much love you put into the doing that matters” -Mother Teresa

Dr Pranab Basu's wife was diagnosed with metastatic colon cancer at the age of 62 years, and he was her sole caregiver. In early 2015, Mrs. Basu complained of discomfort while passing urine. The initial diagnosis was a urinary tract infection. She was put on medication, but there was no relief. Alarm bells rang when she passed blood clots while urinating. In Dr. Basu's words, “It was scary because in spite of the medication, my wife was not getting better.”

Mrs. Basu was diabetic and hypertensive. She also had hypothyroidism. A computed tomography scan was advised, which revealed an irregular right adnexal mass infiltrating the posterior bladder wall and sigmoid colon (likely to be an ovarian mass) and bilateral simple renal cortical cysts.

What followed was an exploratory laparotomy. The next step was the removal of the adnexal mass. She underwent surgery on June 25, 2015. Histopathological examination revealed metastatic colon carcinoma (Krukenberg tumor with omental deposits).

“Cancer – how is it possible?” was the first thought the couple had. “We were shattered by the diagnosis, but we were not going to give up. My wife was a woman of indomitable spirit with a very positive outlook toward life. We made up our minds to fight back together,” said Dr. Basu. She was advised palliative chemotherapy and received eight cycles each of CAPOX and capecitabine regimens.

Thus began Dr. Basu's journey as a caregiver. Along with taking care of his wife, he had the responsibility of managing their home and the household chores. As a husband and the primary caregiver, he used this opportunity to express his respect and love for Mrs. Basu, which she needed the most during the course of her treatment. The side effects of chemotherapy sometimes were very severe, which would upset Mrs. Basu emotionally and physically. However, she put up a brave fight. She indeed was a very brave woman. In Pranab Da's (Dr. Basu is affectionately referred to by this name) words, “It is true that sometimes I felt frustrated and worried, but I always overcame the negative emotions by cultivating a positive outlook. I believed that eventually she would emerge victorious. As a caregiver, I developed compassion fatigue and burnout which I know happens to almost every caregiver. My role was to support her physically and mentally, which most of the times helped her through the difficult rounds of chemotherapy. To be honest, the caregiving journey enriched my life and gave me a deep sense of satisfaction, confidence, and accomplishment while caring for my wife, especially when she suffered from the side effects (of chemotherapy) such as nausea, vomiting, constipation, diarrhea, weakness, and lethargy. I was always on the lookout for any sign of mental distress; at such times, I would counsel her, chat with her, and listen to her; sometimes I would just be there for her in silence.”

After the completion of eight cycles of oral chemotherapy, the couple travelled to Mumbai for further treatment, where they found that there was gross progression of the disease. What followed was four cycles of intravenous chemotherapy with the FOLFIRI regimen. The outcome was not as they had expected. In January 2017, the oncologists decided that the only option left was a major surgery to relieve the pain as the tumor was now infiltrating her organs. The couple consented to the surgery.

Pranab Da, who believes that the journey of caregiving is unique to each caregiver said, “No words can express the mental agony and distress I was going through. I can recall two incidents that left an imprint on my heart. After the seventh cycle of chemotherapy, she suffered from acute diarrhea which did not get better despite medication. Later, I admitted her to a nursing home 50 km away from my residence. She had almost collapsed by then. On arriving there, the oncologist rebuked me for the delay. To this day, the guilt of not admitting her sooner bothers me. The second incident happened in Mumbai. She was incessantly passing an unimaginable number of blood clots via the urinary tract. I rushed her to the emergency room at midnight. I thought I was going to lose her. Words cannot express the magnitude of the mental distress I suffered.”

The final surgery was performed on January 31, 2017 (cytoreductive surgery with hyperthermic intraperitoneal chemotherapy: Anterior resection + hysterectomy + partial cystectomy + right colectomy + omentectomy + abdominal wall resection + myofascial + anterolateral thigh flap (right) + meshplasty for lower abdominal wall). She was discharged after 34 days, and they returned home. She was better for only 4 months. As the disease progressed, the oncologists expressed their helplessness, and she was put on best supportive care.

Pranab Da says, “Can you imagine my mental state? I had been foreseeing the demise of my beloved partner. I felt numb, but I never neglected my duties as a caregiver as we prepared ourselves for her impending death.”

Mrs. Basu passed away on October 15, 2017, after a 2-year long struggle.

Dr. Pranab Basu feels that:

  • Caregivers (especially women) are deprived of recognition and support from other members of the family, society, and even doctors
  • The burden of caregiving can be overwhelming; hence, it is important for the caregivers to take out some time for selfcare without feeling guilty about it
  • Respite care can help the caregiver manage the responsibility of caregiving better
  • There are many caregivers whose mental and physical health gets impacted along their caregiving journey.


Therefore, it becomes important to empower the caregiver and recognize the role they play. This can help them heal and encourage them to invest in self-care.


  About the Patient Top


Mrs. Basu graduated with Honors in Zoology and was fond of reading books and listening to her favorite songs. She liked traveling, especially to hill stations in the Himalayas with her husband. She had an indomitable spirit and willpower to face the challenges during her cancer journey and was an inspiration to the other patients. A kind human by nature, she also loved crocheting, cooking, and was a perfect homemaker.


  About the Caregiver Top


Dr. Basu retired as the Assistant Headmaster of a government school. He also worked at the Anthropological Survey of India and surveyed the remotest tribal villages in South India, highlighting the challenges faced by the tribal community. After the demise of his wife, he now volunteers as a counselor for patients with cancer and their caregivers. He visits villages and spends time with the elderly and sick people. He is a passionate advocate for the integration of palliative care in the management of all patients diagnosed with challenging diseases.

About The author

Vandana Mahajan is a Palliative Care Counselor, with a Postgraduate Diploma in Integrative Counseling. She is associated with the Mumbai-based non-government organization, Cope with Cancer-Madat Trust. She works as a volunteer counselor in the thoracic disease management group at the Tata Memorial Hospital and also provides cancer counseling across India through online platforms. She is a cancer survivor too!

The story has been presented as shared by Dr. Pranab Kr. Basu, M.A. PhD, B.Ed., with Vandana Mahajan. Dr. Pranab Basu is an erstwhile caregiver to his wife who succumbed to colon cancer.

Email: [email protected]

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.






 

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