Colon Cancer Diagnosis
Initially, my wife had a urinary tract infection. So, I took her to the doctor, and he gave medicines and said that everything else was fine. She was taking medicines, but then later, she started having blood in her urine. When we consulted the doctor, he advised us to continue the medication for two more months and visit again. There was no pain, but while we were touring in West Bengal, she suddenly started experiencing excessive pain in her stomach. That was the first symptom that appeared, and then the pain gradually increased when we were back home. I took her to the doctor, and he told me to do a CT scan immediately. In the CT scan, the tumors appeared, which was very aggressive, and she was diagnosed with colon cancer, which had metastasized to her whole stomach.
She already had diabetes, hypertension, and thyroid. So when the colon cancer came, I told my wife that now you are a VVIP. And, she actually smiled. In this way, the patient should be put in a soothing atmosphere by those around them, rather than in a distressing one.
Colon Cancer Treatment
She underwent surgery in Kolkata, and after the surgery, I saw the tumor, which was like an octopus; it originated in the colon, but it penetrated the urinary bladder, intestine, and was all over her stomach. She also underwent 20 cycles of chemotherapy, from a hospital in Mumbai.
Later, she underwent 20 chemotherapy cycles from Mumbai. First, she took eight chemotherapy cycles, then eight oral chemotherapy cycles, and then again four chemotherapy cycles.
But the colon cancer relapsed, and the tumor progressed. In the board meeting, the doctors said that there was no guarantee, but we could do a major operation as a last option, which would take around 16 hours. When the doctors asked for our decision, my wife said yes, and thus she underwent the operation.
I was the only person to look after her because my daughter lives in Chennai, and therefore could come only for the major surgery in Mumbai. The prognosis was poor from the very beginning; the oncologist had told me that she could hardly live for one and a half years. But even then, I decided to give her as much comfort as possible.
I felt that the second operation would prolong her life for one more year, but unfortunately, it could only prolong her life for five more months. She was bedridden only in her last 15 days; otherwise, she was okay. I was the sole caregiver, and I gained a lot of experience by communicating with doctors, researching the disease, and realizing the patients’ needs. I feel that love is the word that can eradicate the pain of the patient; love cannot be expressed in words; it is a feeling. I believe that she understood and knew that she was not alone in her journey. She showed great mental strength to fight the disease the way she did. The only thing I knew from the very beginning was that as it had metastasized, it was incurable.
I had some mental distress, but even then, I made myself accept the reality because death is inevitable, and so was the fact that one of us had to go before the other. So, in that way, I controlled myself and managed myself through those times.
Ultimately, she left for her heavenly abode in October after two and a half years of treatment. She died a dignified and peaceful death. She was freed from her pain, which is my satisfaction because cancer patients suffer a lot during their last few days or months, and it is horrible to see the patient suffering. I feel happy that she didn’t have to suffer a prolonged bedridden state.
During this caregiving journey, I understood that the caregiver must have a basic knowledge of the disease and should not give false hope because false hope can rebound disastrously.
Counselor for Palliative Care Patients
Later, I joined the Eastern India Palliative Care in Kolkata as a counselor and counseled the terminal cancer patients hailing from poor conditions. I used to try a different communication method, and their smiles at the end of the session gave me so much satisfaction.
Advocacy of Palliative Care in India is the need of the hour. Sometimes, it is very tough because palliative care in India starts at the very end only. If it starts from the beginning of the diagnosis, then the patient will get more comfort and will have to undergo less suffering and pain. I am attached to Eastern Palliative Care, where we arrange a home visit for patients who are almost bedridden and cannot come to our clinic. The patients registered under Eastern India Palliative Care are treated free of cost. We visit them to boost their mental power and reduce their pain, and we provide morphine as pain management. Many people don’t understand that pain is not only physical pain, but also mental, social, and spiritual pain. So as a whole, palliative care is an approach aimed at the person and not the disease.
Recently, I am associated with Pallium India. I completed the seven-month certificate course for psychosocial clinicians of Palliative care. I am fortunate to have been associated with Pallium India. I am still studying the vast curriculum of palliative care. Palliative care is a vast world that is still neglected in India. Only 2% of patients have access to palliative care. The awareness is still lacking in our country.
Now I am engaged in writing and studying. This engagement makes me feel that I am not alone. Being alone aged 73, after losing my wife three years ago, I could have felt very frustrated, but these engagements have provided a new meaning to my life.
How caregivers can de-stress themselves
Caregiving is an invisible art, only felt by the receiver. During the caregiving journey, fatigue, anxiety, and deterioration of the caregiver’s health might happen. But the caregivers should look after themselves; otherwise, caring will not be perfect. If they don’t become fit, then how can they look after the patient!
The caregiver must take nutritious food, do physical exercise, yoga, and meditation to calm their minds. They must talk to their nearest ones and express their feelings to their loved ones. But they should also take care to avoid those people who advise them in the wrong way.
They must try to have a proper sleep. If the caregiver is fond of music, then they must listen to music, and not only the caregiver, but the patient can also listen to music. My wife was fond of music, and when she was in unbearable pain, she used to listen to music, and it helped relieve her pain to a degree.
Things to tell and not to tell the patient
We should not use any word or sentence regarding the disease. For example, if I visit any patient, I will not ask them, “How are you?” I will ask, “How are you feeling now?” Then they will speak, and I can actively listen to them.
No one should say to a patient that you have been affected with cancer, and therefore nothing can cure you. Cancer has an answer nowadays with advanced treatment procedures.
We should understand that 50% of the disease is cured through the right treatment and the rest 50 % is through good counseling and mental power.
Don’t indulge in negativity. Have a positive outlook on life. Accept the reality and fight to the last. The caregiver should take care of the patient with empathy and compassion. Love is a priceless word with eternal meaning. Love has the immense power to heal everything.