Abhilashaa Pattnaik's Caregiving Journey
Hey guys, I am Abhilashaa Pattnaik. I am a fashion designer and a professional consultant who helps NGOs plan events and successfully carry them out. I'm the eldest in the family and have two younger sisters and a younger brother. We were all brought up in Gwalior, Madhya Pradesh, and currently, I live in Faridabad, Delhi, NCR. Today, I'm here to share my experience of caretaking my mom through her Cervical Cancer journey.
I have never heard anything related to cancer in our family before, except for my cousin, a Breast Cancer survivor. In 1992, my mother was diagnosed with cervical cancer, and this news had traumatized my family and me. Like every other mother, my mom had ignored her health problems and had always sought to help others.
Cervical Cancer Diagnosis
My mother always had a backache, but she ignored it for being a slip-disk problem, which was incredibly wrong. She used to go for physiotherapy and took painkillers. But after her menopause, she had bleeding and informed my sister about it; that is when she decided to go for diagnosis. Remember, any kind of early symptoms can be dangerous, and we all should consult a doctor before anything worsens.
Initially, when my mom called me to tell me that she would get herself diagnosed, I was worried about what would show up in the diagnosis report, and I couldn't sleep the entire night. I was so frightened that I could not even tell my siblings about this, thinking they might get tense. You won't believe it, but when my mother called me, she was happy and familiar to inform me that she was diagnosed with Cervical Cancer. Her voice is still stuck in my head, and no matter what, I can never forget those words of her.
Cervical Cancer Treatment
The next day I went to my parent's place and checked the diagnosis report, and she was in the third stage of Cervical Cancer. I have never been in this position before and had no clue where to go and what to do. My family members and I were confused about which hospital we should take her to. After trying every hospital in Gwalior, my brother took her to Mumbai with him for treatment. She spent the next one and a half years in Mumbai for treatment purposes, but she could not cope with her treatment despite endless tries. My mom had gone through 12 chemotherapies and three chemoradiation cycles. The doctor had advised her not to go for chemoradiation as it was affecting her kidney.
After going through chemotherapy, my mom used to feel weak for a whole week. Even after being diagnosed with cancer at the early stages, she did all her work by herself and never sought help from me, my sisters, or my brother and sister-in-law.
A few months passed, and we had another heartbreaking news. My mom also had a severe kidney problem. So I spoke to my mom over the phone, and she was like, "can you take us to Delhi? and I felt she required a caring environment in which she had always lived. I took her home finally.
Role as a Caretaker
Here the journey began, not the journey of a mother and daughter but of a doctor and a patient. I had a doctor's role more than a daughter now and thought of every way possible, so she reacted better to the treatment. Here in Delhi, she had all her relatives close by, and she slowly started recovering and had a smile on her face again.
As a caretaker, you need to have a lot of patience to deal with the patient; ultimately, the patient's dissatisfaction turns into yours. My parents have never differentiated between my brother and me and have always given us the same amount of love and provided us with the same amenities. How my mom used to treat me as a child, I now had to care for her the same way. I have treated my mother like she was my kid and not my mom. I had to change her diapers, feed her, and even pamper her when she felt low.
It was a challenging and tough task for me to take care of my mom at home. It was a day and night journey, and I had to attend to her whenever she required. I had set up a bell in her room to ring it anytime she needed something. I had no rest as I was also working then and was busy throughout the day. My husband has helped me a lot in this long journey, and we used to look after my mom in shifts so that my health was also okay. Treating a cancer patient not only requires financial support but emotional and moral support as well. Treating a cancer patient alone is highly impossible, and dividing work can make it easier.
Response to treatment
After a month, she started recovering, and she was Eating well. She also made food and pickles for us. She stayed and recovered well at my home for about 6 to 7 months, and the doctors told me, "Abhilashaa continue what you are doing. At that moment, I felt that when you give your love, affection, and 100% dedication to something, it can never go wrong. Being surrounded by our relatives, my mom had engaged and showed signs of recovery, and we realized that if we had done this before, maybe cancer would not have prolonged to this extent.
I then started reading books on cancer and did some research to promote my mother's recovery, and I had changed her entire lifestyle. My sisters and I started giving her healthy food in small intervals to get the much-needed nutrients in her body. My sisters and I used to divert her mind with some old memories and give her food, and it seemed to be working. After a month, we witnessed improved results, and she started walking with the help of a walker. I used to tell her that "there are many people like you, who have been diagnosed with cancer but still help others to boost her confidence.
As a fashion designer, I started designing clothes for my mom, which made her feel great again. After that, I learned that love, care, and money could cure cancer. My mom was about 65-66 years old when she left us, and she had cancer for three years. She was in the last stage of cancer when she was diagnosed, and we had nothing much that we could do about it.
Challenges faced during her last days
During her last days, she was having problems with her urine and stool. She was on diapers 24/7, and whenever she ate anything, it left her body. Due to the liver problem, which prolonged and got out of control, poison started forming around her liver and slowly spread through her whole body. One day she had poison spreading through her body because of the liver problem, and it had reached her mouth. That day I called the doctor immediately and asked him to come home and check her out. He came over and checked that the poison was spreading rapidly, and he said that she has very little time now.
After my mom left us, I became obsessed with cancer. Treating her for three years had made me an expert on how to deal with cancer. I used to get calls from doctors to provide mental stability and support to cancer patients. I used to tell the patients how my mother survived with cancer for three years. We never know how long the journey will last and how many difficulties will come our way. We all need to start with a positive mindset and give our best whether we are a caretaker or a patient; both are on the same legs.
I am currently working for an NGO (Founder of Shining Rays, Director of Cancer Warrior Beauty pageant) that organizes ramp walks for cancer patients. I have come up with a team of designers, makeup artists, and hair designers who help me make these people look great when they are on stage. I have numerous girls who are patients, but they also treat others with their inspiring stories. I have thought of writing a book with their inspiring stories, doctors, and caretakers for other patients and caretakers to read and build up confidence.
Not having a good caretaker would delay the treatment of the patients. Having a cancer patient at home can be challenging and is a long journey; a good caretaker should be with the patient to provide them with physical and mental support. Reading the patient's mind is very crucial to provide them with the cognitive support they require. Patients with a healthy mind are more likely to cure faster than those who think they can't do anything about it anymore. Chemotherapy can impact the patient's mind, and the family members, doctors, nurses, and caretakers have to deal with that. As caretakers, we need to find a way to cure the patient and start working with a mindset that nothing is impossible.