They thought I was strong, while my heart crumbled watching him in the state that he was in. I knew what was happening to my father.Was I strong?
I can’t say for sure but if at all I was, I hoped my strength helped everyone around me. Being hopeful about his recovery, we weren’t able to confront him with the truth of his sickness as anyone who knew my father would he was pretty good at reading people’s eyes and their emotions through them.
March 2019, almost a year earlier when we returned from his successful ear treatment at the Goa Medical College
in Bambolim, we celebrated his birthday. He was extremely happy to have all his loved ones present on his special day. We were happy without an inkling of the hard times to follow.
It started with a cough, which was quite usual as he had been a smoker for a long time. But this time there was something different. We noticed blood in his sputum which almost never is a good sign scared us all. My family assured him and asked him not to worry since it could’ve been anything non severe like a tear in his throat due to excessive coughing. We crossed our fingers and hoped for the best.
The doctors sent us for a scan which confirmed our worst fears. It was a cancer of the thorax, Stage IV. It had spread and was making its way throughout his body. It was heart breaking to know this.
After this we were directed to the Chest Disease & TB Hospital
in St. Inez. They wanted to do a biopsy but due to his delicate medical condition, it was difficult to get the tissue through his mouth and had to be operated by making a small incision on his back to take a sample. This was sent to Mumbai for identifying the type of cancer present. Based on these results administration of a chemo drug called Etoposide
was decided. This drug costing merely Rs.180 INR was surprisingly unavailable in Goa. We looked for it everywhere. Even the reputed hospitals in Goa did not have it.
Finally our kind family and friends from Mumbai and Pune went on the lookout for the same and arranged for it to be sent to us. My father was given 7 cycles of chemotherapy. He wasn’t aware of his condition until the 1st chemotherapy session. While he was admitted in the hospital, he observed the chemo drug administered to him was covered in black carbon paper since they are photosensitive. He immediately put the pieces together and broke down at the realisation. He yelled at us for not telling him and cried bitterly at the thought of losing everything. Watching my strong father breakdown like this was unbearable for us.
The chemo cycles were painful and they came with side effects as well. He was getting weaker, couldn’t walk and couldn’t stomach anything he ate. Having broken a vertebra due to a fall in the bathroom, also contributed towards his inability to walk. In this period following the chemotherapies some well-wishers suggested an Ayurvedic treatment found in an unheard place in the state of Karnataka. In a state of desperation amid fading hopes of a cure, we travelled to that remote village to buy the Ayurvedic medicines. He did not respond well to these. He was already very weak from the assault of chemo-therapies and the poor diet due to vegetarianism which he hated, that was a requirement of this line of Ayurvedic treatment.
I knew since, he loved food and denying him of this little joy maybe unfair, maybe it was a weakness, but Losing his appetite definitely made him weaker. We decided to halt the Ayurvedic treatment that was clearly too harsh on him.
As time passed his blood sodium and hemoglobin levels dropped to unhealthy levels, due to which he began showing symptoms of irrelevant speech and a state of total unrest. Once, in the middle of the night he had to be rushed to Asilo district hospital
, where he spent a week in recovery.
In a few days’ time, he suffered from a urinary infection which is a known side-effect of the chemo drugs.He was admitted again twice in the hospital for a span of one week each. All of this happened in the course of 3 months that followed his chemotherapy.
He was coping. We were coping , but suddenly one day my mother noticed a lump in his chest and consulted the doctors. They redirected us to a scan.We were shocked to know that the cancer had recurred. The doctors were astonished too. I was told that on average the effects of chemotherapy generally lasted for 6 months, but in my dad’s case it had recurred aggressively within 3 months. The GMC didn’t have anything else to offer. The doctors told me that more chemo will do him no good because he was already weak. I asked whether is there any palliative care provision around to ease his pain, but she wasn’t aware about any.
We didn’t want to give up, we wanted to do everything we could for him.
Talks of taking him to Mumbai surfaced, as one of our relatives had recovered from leukaemia in a Hospital in Mumbai. We sent my dad’s reports to the same oncologist but to our misfortune they also suggested that it won’t do any good moving him all the way to Mumbai.
After that, we booked an appointment with an oncologist in Manipal Hospital
. He saw my dad’s medical records and said not much can be done, but he could still try the Chemotherapy. He suggested to get some brain scans first. To add to our misery, the brain scan showed minute deposition of cancerous cells, for which he asked us to go for radiation therapy immediately. The radiologist doctor went through his case and told me it is a known aggressive type of cancer and no cure would be possible.
The only thing I knew now was to make dad comfortable, I asked what could be done to manage his pain. He suggested that at the moment the brain radiation had to be done and then he would prescribe the pain drugs. Dad underwent 15 cycles of radiation therapy, but nothing really made a difference, he was still in an enormous amount of pain constantly. His sodium and blood Haemoglobin levels fluctuated requiring him to be admitted at Manipal Hospital for correction. My dad never doubted our decisions regarding the treatments for him, he knew we were trying our best. A few days before he passed away, dejected with his situation he asked me to give him something to relieve him from the suffering forever. He could not suffer any longer. I knew he would not want anymore of the painful procedures done to him. I couldn’t anticipate anything less than comfort and relief from the pain for him in the form of palliative care and maybe that’s what he asked for. But we did not know of any such place until a doctor, gave my mother a pamphlet of DILASA
, a palliative care hospital in Ponda, which was an hour’s drive away from my residence.
I called up Dilasa
, giving details of my dad and trying to understand what they could do for us. A kind attendee on the other side of the phone shared a few details and informed me that we could visit them in the mornings. I hung up the phone and told my mother. She couldn’t go visit in the morning hours as she was busy with my dad and his morning routines.So the next time I called to check if I could book an appointment in the evening, I was told the doctor In-charge was visiting a nearby hospital (Asilo, Mapusa) for a conference and she readily agreed to meet us there.
We were waiting for the doctor in the sitting area, after finishing her conference she came to see us. Dr. Sreedevi Warrier
, introduced herself to us with a humble smile. We sat in a meeting room where I shared my father’s case with her. She listened to me patiently while I tried my best to keep my emotions under control. While sharing the painful events my father went through,I felt it would somehow make it difficult for the doctor to share their opinions if there’s no hope. I wanted to assure them that I’m up for any adversity and that they don’t have to play with their words or sugarcoat them to share their medical opinions.
But my mother was sensitive and she could not help breaking down. The kind doctor held my mum’s hand showing pure concern and reassurance that she would help us. When she asked us if dad knew about the severity of his condition. That right there, shattered my ability to control myself from weeping and I broke down. We conveyed that it was extremely difficult for us to break this news to dad. She delicately let us know that they don’t work on a cure but make sure that the patients pain is managed, so that whatever time that they have, they are at peace. It was hard to gulp this down and she tried to comfort me by telling me it was OK not to hold back my tears. I felt assured with her words in that moment. We were asked us to admit my father to the hospital the very next day, as she was leaving the town the following evening.
We came home and arranged the ambulance for the next day, but now it was a different challenge to convince my father to make the 1 hour painful ride to the hospital. After being approached by my mother and sister-in-law and rejecting both of their suggestions to go to the hospital, I went to him in the morning before we were supposed to leave for the hospital. I told him tenderly that I had spoken to the doctor and shared his case. He asked me whether there was any hope. Before he could intercept my emotions and catch me off- guard, I quickly said yes and told him that’s the reason the doctor has asked us to bring him to the hospital. Alas!
He said nothing and then asked me what time we were leaving.
When we reached the hospital, the Dr. had already arranged a private room for us as we had asked. The nurses came in, taking our medical history information.Then the Dr. walked along with the nurses and asked dad a couple of questions. She asked him about his children, where he feels he is and where it hurts. My dad answered her and that was the last time we would hear him speak clearly. The doctors and nurses noted his statements. After that I was pleased to notice that the nurses handled him carefully, they made sure they didn’t touch parts of him that he informed were hurting. I saw for the first time, a doctor asking him permission to examine him. That act of was showing such regard to someone in spite of their vulnerability touched me. It was for the 1st time I saw that gesture, in my years of visiting the doctors. I remember dad telling us how he felt while being handled haphazardly during the times he was in the hospital before. I didn’t think there was anything wrong there, but now I feel that such minute things were extremely important as it was a matter of one’s dignity. She asked us a few questions and then took me outside the room, she told me that dad’s condition wasn’t good, His liver was failing, and nothing could be done to correct it. He would go into geodetic hepatic coma, where he would hallucinate and not be able to remember much. She could only regulate the morphine doses to keep his pain in check.
All I wanted was my father to be comforted and this treatment provided exactly that, but something was disturbing me and I couldn’t place a finger on it. I left the hospital without divulging the doctor’s comments to my mother and my cousin who were staying with dad in the hospital. I had so many questions disturbing me now, I was scared of what was happening. I couldn’t hold back so I picked up my phone and poured my concerns to the doctor:
“Hello Dr, I am not sure if asking you questions this way is correct or not, but I don’t know who can answer them for me. I don’t know to explain this line of treatment that we are giving my dad, I know you meant pain management etc. But I don’t know how to explain to someone who asks me, all the questions like whether “we have given up on him?, Some Ayurvedic treatment somewhere, We don’t have faith in God?, We don’t want to spend on chemotherapy, or take him somewhere else etc”
We are always used to hearing from the Doctors that things are going to be alright, If I say about my dad’s case, I’ll be questioned then, why is he kept there.? Or what are we expecting, it is felt that we are not giving him a chance. I totally regard you doctor, and I cannot think of anything else apart from getting him to you and that you know all about his medical conditions, but the same thing if I am asked I don’t sound good to anyone.
I don’t know if this is in your scope to answer my questions, it is ok if you don’t answer.
Thank you. Shameen.”
Yes, the social stigma always plays an important role in our decisions and I’m not very good at dealing with that. My phone beeped with the doctor’s response. She responded that she understood my concerns and that her psychologist Mukta would talk to me on Sunday. I wondered why a psychologist would talk to me when I wanted to speak to someone from a medical background about my father. Further, she wrote to me:
“Ask yourself what are you expecting, think over it and tell me you will sound like a rebel to many in your family… but ask yourself whether that is important or doing something which you feel is good for him is important, this is not giving up, this is giving what someone wants when the disease is progressing and cannot be cured this is giving and doing..not giving up! and running around for something which is not going to happen and only your immediate family might have seen and felt those suffering.. not everyone around you, our psychologist will talk to you on Sunday. She will meet your mom tomorrow.”
The decisions have always been difficult to make when it is a critical case, all this has been overwhelming when so many people come with contrasting opinions. One does not want to make the slightest error and fear being blamed forever. It is a heavy toll to carry for life. I knew I wanted my doubts to be answered. Although I couldn’t imagine him going through those procedures and side effects again. I sometimes felt; could we give it another chance? Maybe there will be a miracle. I really didn’t know what else I could do.
Dads condition was critical on Friday, his urinary system was affected requiring a catheter to be placed on him and his breathing was getting difficult. Mother called me up in the afternoon when I was on my lunch break and sounded very scared to see and tell me what was happening. She handed over the phone to the doctor there who informed me about the procedures they were doing. It was getting difficult for him to swallow anything now and hence asked my mother whether we wanted the feeding pipes for him.
Hearing that took me back to the time when he was in the GMC ICU ward, not quite in his senses, intubated, with the oxygen mask attached to him. He became restless, he asked us for water which we fed through the food pipes but he couldn’t feel the water through his throat. I remembered how that made him furious that we weren’t giving him a single drop of water to drink. I didn’t want him to have those thoughts again in his last moments. I wished he was aware that his family cared deeply for him, that he would be patiently spoon fed slowly and not painfully without the mental dissatisfaction of not being fed even a single precious drop of water.
Friday night around 11’o clock, although Dr. was off duty in another state, she diligently gave my mother a call conveying about his difficult condition. It was difficult for my mother to hear that, so she handed over the phone to my dad’s sister. I immediately received a call from my mother who was crying too much for me to decipher anything that she was saying. I hung up the phone and messaged the doctor, apologising for late night messaging. She responded, reminding me of the conditions she had shared with me earlier that I had forgotten.
She conveyed to me that he had less time. I kept the phone and cried out. But I didn’t want my Brother and his wife to know, as they would panic. But I didn’t want my family to know as that would cause unnecessary panic. The next morning on Saturday, we went to the hospital, dad was still having a hard time breathing and his speech was slurred. My cousins arrived from Mumbai, I realised Dad’s sister asked them to arrive immediately. My father saw all of his near ones around him and if he could express, perhaps he would have told them how happy that made him; all of us together surrounding him.
My brother wept like a child at dad’s worsening condition. I felt awful and helpless watching him at my father’s bedside. I didn’t know what I could ever answer to him when the time was slipping off.
My mother went out and requested Dr Vandana Patankar who had just finished her duty and was changing her footwear to leave, if she could speak to my brother regarding my dad’s condition.
I was warmed by the doctors kind gesture to come back to speak to my brother in the consultation room for over an hour. It was extremely important to me that my brother and mother be on the same page and understand all that was happening. My brother was very hopeful until the end and he couldn’t accept the severity of the situation.
In hindsight, I believe that the doctors here are best to rely on to convey such sensitive information. He was remarkably better after the consultation with Dr. Vandana P.
That evening Mukta the psychiatrist came in to meet me, I had forgotten about the meeting but the hospital people called her to speak to me. She sat with me for a couple of hours while I expressed my grievances. I was understood and was assured regarding the decisions I made for my father. She echoed the same sentiments were lingering within us; that we had tried our best and palliative care was the best thing we could have done for my father. She commented that it was the first time she met a family who thought from the patient’s perspective. I told her that I was scared of the comments from my relatives and friends on the decision of us bringing my father to a Palliative care hospital, as I had never heard of anyone doing such a thing around us. I wanted to know if my mother was on the same page as I was and asked Mukta about the same as she had spoken to her earlier.
I never wanted my mother to feel guilty, especially when confronted by other people. I remember my mother getting a phone call from a relative saying “in the particular hospital, the patients are not cured but are put to sleep forever.” So, you see, how this concept was perceived. I wanted my mother to be fully aware of what we had done for my dad. I also tried infiltrating her with briefs after I read the book “That good night – Medicine in the eleventh hour”, but I knew it isn’t an easy task when it came to someone of your own. Mukta assured me, that my mother was strong as well. I felt quite relieved at that. I realised that this line of treatment did not only take care of the patient, but also took into consideration the emotional and mental well-being of the primary care givers. This was an unbelievable intervention that I hadn’t ever experienced.
I returned back to the room to see dad lying in his bed sleeping like a baby; he hadn’t slept for months as he would wail in pain. May be that’s what it is to be at peace I thought. I stayed with him that night, he woke up late and was breathing hard. The nurses would turn him on his sides so that he wouldn’t suffer from bed sores. I sat beside him, we applied some Vaseline on him. I noticed he had become so fragile, no longer the strong man I knew. His all-knowing eyes were now looking into nothingness. He was still, but breathing. I sat there quietly caressing his head, glistening with Vaseline. I took that moment to express my gratitude, towards him for giving us so much love, affection and freedom. Freedom to even make the decisions of his medical treatments, for he had that faith in us. I couldn’t let him down. I apologised for the many blunders I made, and that he may be at peace and told him we shall take care of everyone and live together as a loving family. I told him I love him very much. That night mother too sat beside him praying for him, she prayed for mercy and forgiveness.
The next morning on Sunday, dads sugar levels dropped dangerously low. My mother was feeding him chocolate. I was watching him eat and peacefully nibbling at it until he suddenly stopped doing so.I checked my phone it was Sunday, 16th Feb 6:45 am. We called the nurses and the resident doctor who came and declared his demise. We broke down. One of the doctors said, “Look at him, he is so peaceful”. I looked at his body again. Yes indeed he was, it had happened my father shuffled off his mortal coil.
I looked around through my misty eyes and thanked the staff for their cooperation. We were grateful to everyone including the doctors, the nurses and cleaners who had been supportive in bringing us to this end.
I’ll miss my father. I remember rather fondly the times he would call me when I was distressed telling me not to worry. If it was stressful at college or work to drop everything and come home, we can always work something out. His attitude towards life was always positive, and this was the kind of assurance I had from him. Something I will probably will not get from anyone else ever again.
While going through this ordeal, a few months back at work my boss Dr. Contzen Pereira
to whom I am truly grateful, handed me a book “That Good Night- Life and Medicine At the eleventh hour
” by Dr. Sunita Puri.
I read it without questioning which I usually do. I am grateful to the author for writing such a wonderful piece. I suggest it to anyone who is going through a similar situation or wants to learn more about this subject. These lines on faith touched me deeply and I couldn’t help myself from going back to them again and again.
Pic. taken from the book “That Good Night”
In such times of difficulties, I have come to realize, that It is important to be supportive to the caregivers, the family along with the patient. To help them make the best decisions and guiding them. I am grateful to the support I received from family and friends, especially the palliative care professionals who helped us to go through this.