Learnings from my Father’s Cancer Journey

Learnings from my Father’s Cancer Journey

– Ms Debalina Ray, Bengaluru

With this article, I would like to share my personal experiences, as a caregiver for my father who was diagnosed with stage 4 bladder cancer. My mother too, unfortunately, passed away 21 years ago, after losing her battle with breast cancer. I have therefore personally experienced the devastating effects of cancer on my family, as I lost both my parents to this disease.

During this journey as a caregiver, I faced numerous difficulties and made several mistakes; yet, along the way, I also learned valuable lessons, and much too late about the role and importance of palliative care in such situations. By sharing these experiences, I hope to help others who are facing similar situations to make informed decisions and receive the best possible care for their loved ones.

My father was 78 years old, a nonsmoker, a teetotaler and was someone who lead a very disciplined life. In May 2019 my father observed his first symptoms. After undergoing consultation and biopsy, we were informed that there was no cause for concern as the reports came negative for cancer. It was a great sigh of relief for all of us. The doctor then advised us to not worry and said that no further consultations were necessary.

A few months later my father experienced the same problem again. We went to the doctor the next day, who recommended an ultrasound. Upon seeing the ultrasound report, the doctor informed us that there was a tumor in his bladder and that he needed an urgent cystoscopy. Two days later, the procedure was performed and sent for biopsy. This time, the biopsy report came back positive for high grade tumor.

My husband and I rushed to the doctor upon receiving the report. The doctor recommended a PET scan which we scheduled the very next day. The diagnosis: Stage 4 cancer which had spread to his lungs.

The doctor called us to his chamber and simply told us that nothing could be done due to my father’s age and heart related issues. At that point we were at a loss for words and unsure of what to do. My husband and I had just stepped out of the doctor’s chamber and I was trying to hold back my tears. I looked at my father with tear filled eyes, but he didn’t react at all. He was not interested in discussing the disease. It was an incredibly helpless situation for us, whose world had come down crashing all of a sudden!

Shortly after, my father expressed a desire to go back to his native place. I was however hesitant to leave him there alone. Despite my reservations, we agreed to send him with one of our relatives. My plan was to bring him back after a few days; but that never happened. The first wave of Covid 19 struck and a sudden lockdown was declared, and my dear father got stuck in his native place.

I arranged for elderly care services, had regular video calls with him. Each call only showed my father becoming weak and spending most of his remaining time in bed or resting. I felt a terrible and deep sense of helplessness and despair knowing that my father was fighting cancer all alone, without my help at his most difficult time. My father was a fighter, bearing the pain of cancer and the pain of separation from me due to the lockdown.

Once the lockdown lifted, I finally managed to reach my native place, only to find my father unconscious. I only had a few hours to spend with him before he passed away, moving on from this world to the next.

Since then, I have come to realize that the meaning and perspective of ‘happiness’ can vary greatly between a normal healthy person and a terminally ill patient. For a normal healthy person ‘happiness’ may come from achieving goals or milestones, or in getting good grades, having a satisfactory job, a successful career, the completion of a project etc. These accomplishments usually bring with it, a sense of pride and happiness.

In contrast, ‘small things’ can bring ‘great happiness’ to someone terminal and who is at the end of their life. I noticed that for my father, spending time with him and listening to his stories from the past made him feel ‘happy’. Singing was another source of joy and comfort for him, as he continued to sing and record songs on his smartphone even as his health declined over time.

For me, his primary caregiver, my ‘happiness’ also changed to things as simple as being able to cook / arrange a meal of his choice. Seeing the smile on his face made my day! I searched and tried various relaxation techniques to help him relax and cope with his symptoms. I found joy when I noticed that my efforts of administering deep relaxation techniques, visualization or gentle messages helped him relax and feel more comfortable.

Now, as I reflect upon my mistakes, I realize that precious time was wasted after my father’s diagnosis. I could have immediately taken the support of palliative care, which I didn’t have much knowledge about or even its existence at that time. Sadly, no one advised us of palliative care either.

In December last year, I attended the IAPCs workshop on Managing Psycho-social issues of chronically ill patients, in which I learnt about the crucial role of timely and effective communication in palliative care. It was through this workshop that I understood the various stages of grief and recognized that my father had experienced denial during that difficult period. I also realized that it was common for patients to struggle with shock and disbelief following a cancer diagnosis, and that my father was no exception.

It is sad and unfortunate that I wasn’t empowered with the necessary communication skills at that time to address my father’s distress in an effective manner. As a caregiver, I struggled with feelings of guilt as I was unable to be physically present by my father’s side, when he probably needed me the most. However, attending the workshop proved to be a turning point for me and I am grateful for the knowledge I gained from it. Looking back, I only wish that I was empowered earlier so that I would have been better equipped to handle my father’s, and my own emotions, effectively.

I strongly believe that it is crucial to create awareness among the community not only about the disease itself and its preventive measures, but also about when to seek support from palliative or hospice care, and the difference between the two. If professionals from different disciplines come together and work in unison, we can ensure that individuals facing end of life care receive the highest level of care and support they deserve. With this article, I hope to magnify the message that these collective efforts should not be limited to only doctors, nurses, healthcare professionals but must also garner the support of the non-health care professionals as well.

I would like to leave you all with the following message by Mother Teresa: “I can do things you cannot; you can do things I cannot: together we can do great things.”