One late afternoon during his supposedly normal recovery phase, on 26th June 2019 to be precise, my father suddenly started coughing vigorously. I extracted some cough from his Tracheostomy tube through a rented suction machine. But the coughing did not stop. He was in visible discomfort and after a few seconds somehow his breathing apparently stopped or was severely compromised.
I immediately called his onco-surgeon, who asked me to take out the Tracheostomy tube. As per his instructions, I cut the stitch attached to his throat and removed the tube. Then I, my sister and my wife hurriedly took him to a big corporate hospital’s emergency ward in Gurgaon as that was the nearest. The critical care staff immediately moved him to a familiar area, which was labeled as ‘Major Trauma’.
They revived my father by giving him double shocks. When they gave me the news of his revival, I literally had a cry of relief and thanked God for it. But their expressions indicated something else. The doctor in charge then informed that this episode had caused him serious brain injury, which had put him in a coma. They called it brain hypoxia.
No doctor was able to tell us the exact cause of this episode. The tracheostomy tube showed no blockage and the Echo heart test was also fine. But the potassium level was found to be quite high. It remained a mystery as potassium usually becomes high post-cardiac arrest and very high potassium can also be a cause of cardiac arrest. But he was not being given anything containing high Potassium.
Suddenly, cancer had taken a back-seat as this had become a critical neurological case now. A discussion was held with the hospital’s critical care head and their in-house neurologist after which, on 8th July, we decided to transport him to a Kanpur hospital in an Advanced Life Support ICU ambulance (with ventilator) also equipped with a Doctor and a nursing staff.
The seven hours ambulance journey to Kanpur was uneventful. We had stopped once for a loo-break at my father’s favorite Surya Dhabha in Sikandra (75 km from Kanpur). My father invariably used to have tea here during every Delhi-Kanpur road trip. Though this time he was unconscious – lying in an ambulance.
More than two long-drawn years have passed by, but I still clearly remember when it all began: the evening of the 18th day of November 2017. My father had called me on my phone to break the news that he had been noticing a lesion, an odd-looking ulcer roughly 4 cms in size, inside the left side of his mouth for a few days.
It was a regular day for me at my office in Kanpur: our hometown. Being in a joint family business, my father and I shared the same office cabin. We used to sit opposite each other. He usually left office after lunch to administer another business unit. Sensing the tension in my father’s otherwise unflinching voice, I stepped out of my office building.
When our telephonic conversation ended and after I was able to absorb its implications, I was so stunned that I literally felt the ground slipping under my feet. Until then, never before – not even once in my life – had I experienced this kind of horrible feeling. I just told him that come what may, we would sort it out together.
Instinctively and straight away, I called my ex-gym-partner and close friend – a radiation, clinical & medical oncology expert Dr. Sharad. The next day, Dr. Sharad uneasily but bluntly explained that the tumor was pointing towards malignancy and that it had to be removed at the earliest by a Head-and-Neck onco-surgeon to avoid further spread.
My father was a regular tobacco chewer for many years. As per historical data, oral cancers have evidently a strong and undeniable association with tobacco use. Unfortunately, there was not sufficient awareness regarding the ill-effects of the still shamelessly sold evil substance, say around 40 years ago, probably when my father might have developed tobacco addiction. If that were the case, you wouldn’t probably be reading this article.
My worst fear had come out to be true. But my father’s way of handling the prognosis with no noticeable feeling of tension was beyond my comprehension. On the contrary, he was coolly responding and behaving in a restrained and dispassionate manner.
The reason, I believe, was that because he had endured a difficult personal and professional life. Discharging the responsibilities almost single-handedly as the head of our joint family and its businesses for decades had not only taken a toll on his health but had simultaneously given him the extra courage and mental fortitude to come to terms with this disturbing diagnosis.
And dealing with surgeries was not new to him either. In the year 1997, he had met with a car accident (head-on collision of his Tata Sumo with a truck), in which he had broken his leg and hence the surgery. Another corrective leg surgery was performed subsequently. Then there was another surgery in the year 1998 for his Appendix removal. He had also suffered from diabetes, hypertension and hypothyroidism. Still, his cool and positive attitude made me, I dare say, relaxed.
SEARCH FOR AN ORAL CANCER SURGEON
We made a list of renowned cancer surgeons in and around Delhi with the help of Dr.Sharad and my cousin brothers Dr.Shashank and Dr.Raghav and their network. A few people had also suggested the names of Dr.Anil D’Cruz of Tata Hospital, Mumbai and Dr.Sultan Pradhan as they are considered among the best-known cancer surgeons in India. But my father did not want to go to Mumbai.
In November end, we planned a visit to Delhi and the first doctor we visited was a senior oncologist of a big corporate hospital located in an upmarket area of South Delhi. The oncologist briefly told us that though the biopsy had not confirmed cancer diagnosis, however, as per clinical observation, surgery must be performed for removing the tumour and some margins around it.
The meeting was very short and satisfactory. But we had still not zeroed down on anything as we were yet to meet two more surgical oncologists based in NCR.
Both these surgical oncologists surprised us with the additional information that since the CT scan is showing slight bone erosion also, a segment of the bone over which the tumour was sitting would also have to be removed along with the tumour and to replace it, a small part of bone called the Fibula from the lower leg will be used (Segmental Mandibulectomy).
Meeting different doctors with their divergent views on Segmental Mandibulectomy (whole jaw bone segment removal and reconstruction) vs Marginal Mandibulectomy (just a slice of jaw bone removal) and that too for the same disease, puzzled me. More importantly, it increased the overall gravity, duration, cost and perhaps the complication of the surgery.
So, with a heavy heart and an over-worked brain, we directly went to again meet the senior surgical oncologist at the South Delhi hospital. When we asked him about our bone removal doubt, he told us that he had already seen the reports yesterday and was aware of the bone erosion and that he would just slice a small part of the bone along with the tumour. He meant the whole bone segment would not need to be removed, just a small part. He was referring to Marginal Mandibulectomy.
We were immensely relieved after the meeting as our search for cancer surgeon came to an end and the choice was unanimous.
FIRST SURGERY + RADIATION
On 8th December 2017, the surgery was successfully performed by the head & neck surgical oncology team without any major complications. Thankfully, there were no ugly scar marks or disfigurement on his face because of a skillfully performed reconstructive surgery without any bone replacement.
Post-Discharge recovery was uneventful except one instance when he felt severe discomfort because of his Ryles Tube (nasogastric feeding tube). We had to remove the tube ourselves. He felt instantly relieved after that. It must have been misplaced somehow. Though I would not advise anyone else to do that.
On the basis of the final histopathology report, the head surgical oncologist advised radiation therapy for my father, which he had undergone at a cancer hospital in Kanpur. We were also told that regular monitoring/check-up is extremely crucial during the first year as maximum chances for cancer recurrence are during the first year itself.
We were aware that Radiation therapy is the use of high-energy radiation to damage cancer cells’ DNA and destroy their ability to divide and grow. Even though it was done through an advanced linear accelerator machine, my father still suffered from its usual side effects like painful mouth and throat ulcers, difficulty in swallowing, extreme weakness, depression, etc. Despite this, he underwent the prescribed 30 radiotherapy fractions (sittings) very bravely.
It began at the time of my grandmother’s demise in January 2018 end and concluded mid-March 2018. So emotionally, it was a ‘double shock’ for him.
The first two weeks (out of a total of six weeks) of radiation were relatively bearable. After that, due to numerous painful mouth and throat ulcers, he faced enormous difficulty in swallowing even water. Mucaine Gel (an antacid-anaesthetic) combined with other pain-killers marginally alleviated the pain and acute discomfort.
This time, due to the previous incident with the Ryles feeding tube, I had somehow procured a Silicon made Ryles Tube, which is considered to be more tolerable for its patients as its thinner and softer.
But since he was a diabetic, the side-effects were multiplied and healing became slower. I gave him the required insulin dose as per the sliding-scale insulin chart. He was being given a liquids-only vegetarian diet through Ryles Tube and was averse to protein shakes. He weighed around 72 kgs before the surgery and was reduced to merely 62 kgs post-radiation. A whopping 10 kgs weight loss in just 3 months.
As we found feeding through the Ryles tube feeding bag somewhat cumbersome, I had procured a unique 50ml syringe with a long pointed tip called ‘catheter tip syringe’, which was specially made for Ryles tube feeding.
Eventually, my father was declared ‘cancer-free’ after the treatment. At that time, I was not aware that there was no such definitive expression as cancer-free.
CANCER RECURRENCE + SECOND SURGERY
As instructed, we went for a follow-up checkup to the South Delhi hospital on 23rd May 2018. The head onco-surgeon examined my father and told us that there are no signs of cancer in his mouth and asked us to visit again after three months.
But just around when our next quarterly visit to Delhi became due, my father told me that for a few days, he had been noticing another persistent ulcer – this time on the right side of the mouth but at exactly the same location as before – just on the opposite side.
His onco-surgeon called it contra-lateral recurrence. He too expressed his surprise when he saw it. He told us that it had to be operated again and this time though the primary tumour removal surgery was of the same gravity, the reconstruction part would be more extensive.
Because of that, the total estimated cost of surgery went up by around three times compared to the first surgery. At this point, I realized the importance of having sufficient health insurance coverage and I strongly suggest that everyone should have a comprehensive individual/family floater policy.
Because of cost constraints, we went to meet another surgical oncologist at a reputed hospital in South-West Delhi. The onco-surgeon sincerely examined my father in his chamber and was exactly of the same opinion which we got the day before but he discussed his surgical approach with more clarity and patience. We were impressed with his meticulous examination and sharp observation skills.
My father was successfully operated upon on 3rd October 2018. We were glad to know after the final histopath tumour report that this time my father would not have to undergo the gut-wrenching radiation therapy.
Our family had collectively decided that hereafter we would make some serious lifestyle changes for my father: light walks, healthier diet, alternative healing, etc. I was beginning to think that all our problems were gradually disappearing. But I did not know that we had challenged the evil emperor of all maladies.
While we were planning all this for my father, the area which was operated this time started discharging some pus-like fluid. Doctors suspected osteonecrosis i.e. death of part of the bone due to inadequate blood supply. They said it was a common after-effect in these types of surgeries.
When we showed it to the South-West-Delhi hospital’s oncology team, they too weren’t able to anticipate that it was the sign of something even they couldn’t have imagined. They initially advised conservative management of the defect through basic dressing, cleaning and careful observation. For this, we were asked to visit the cancer OPD almost daily for around 2 weeks.
About a month later, on a follow-up visit, the South-West-Delhi hospital’s oncologists observed a small whitish patch on the same area. A Kanpur based plastic surgeon had later wrongly diagnosed it as ‘tooth-bite’ and had almost fixed the date for operating the same. Anyways, the South-West-Delhi hospital’s oncology team had done a biopsy, which later revealed that it was not cancerous so we became rather relaxed.
During a follow-up meeting, the onco-surgeon had planned to go ahead with excision even if the lesion was not cancerous and had advised PET Scan and MRI scan of the area. I did not sense any feeling of urgency.
We came back to Kanpur and my father thought that perhaps because his blood sugar levels are continuously high, the wound is not healing. So, we met an Endocrinologist, who also advised us to postpone the surgery and wait for a few more days until the blood sugar level stabilizes, with the hope that the wound may heal on its own.
But a few days later, only after my cousin brother Dr.Raghav’s insistent intervention, we met a local surgical oncologist in Kanpur. As soon as this Doctor saw the pus discharge and inspected the whitish area inside the mouth, he confidently declared that cancer had come back. We eventually got to know through a repeat biopsy that the cancer had ‘actually’ come back. Moreover, this time the defect was apparently even worse because of the initial delay in diagnosing it correctly.
My family members and I wanted that this time we should first meet the surgical oncologist, who did the first surgery, for his expert opinion instead of directly meeting the South-West-Delhi hospital’s onco-surgery team and he too thoughtfully said that this was a rare cancer recurrence and that another surgery was required.
When we conveyed our budgetary constraints, he asked us to meet his colleague – another oral cancer specialist of a different unit of the same group of hospital as it was a much more reasonably priced unit than the South Delhi hospital.
We met this surgical oncologist the same day. Formerly an ENT doctor, he was now head & neck oncology expert at this Hospital. I was once told by my cousin ENT specialist that ENT surgeons usually make very good oral surgical oncologists as they have a fine understanding of oral anatomy.
Meanwhile, we also had PET-CT and MRI Scans done but not from the hospital. As we got to know that a chain of reputed diagnostic centers in NCR namely House of Diagnostics performed these scans at almost half the rates compared to any standard hospital. And their reporting standards were also quite good and accepted by most hospitals.
We noticed that though PET-CT scan was more expensive and time taking, it proved to be much more accurate in our case. Because PET-CT scan of my father clearly showed two separate malignancies few centimeters apart while MRI scan showed only one malignancy – the more prominent one and overlooked the smaller tumour.
During the first meeting itself, the ex-ENT onco-surgeon analyzed the scans and the tumors. He was blunter in communicating his diagnosis and the severe lifestyle deterioration that my father would have to face after this surgery. He asked us to wait outside his chamber and told us that considering the extent of defect, he had to discuss with the South Delhi hospital’s senior oncologist (who did the first surgery) whether we should even go ahead with the 3rd surgery or not. When we asked why, he said-: “Sir, we cannot take your whole mouth out”.
As we sat outside, a chill went down my spine. What did he mean by not going for another surgery? This implied my father living with this cancerous growth and waiting for it to spread further or metastasize somewhere else? It did not make any sense. At that moment, my dispirited father said-: “However carefully we plan or ponder, things happen (or not) like they are destined to.”
For the second time in my life, I experienced the same kind of miserable feeling that I had earlier experienced in November 2017. But who knew the worst was yet to come.
A few days later, after a detailed discussion with both the surgical oncologists, we had fixed 23rd May 2019 (Ironically, exactly one year after that successful follow-up visit to the South Delhi hospital) as the date of the third and we prayed that hopefully for my father – the last surgery. Our prayers were answered in an unimaginably sadistic way.
I remember just before my father was taken to OT for surgery, he was looking abnormally disturbed and preoccupied. As if he was having a bad feeling about the outcome of this particular surgery. I could see it in his eyes.
When the surgery crossed the 14th hour, that was when our family got worried. Because the duration of the second surgery, whose magnitude was also somewhat similar to this one, was comparatively shorter. My sister and I were in the waiting area when our father was shifted to the Surgical ICU at around 4:00 AM.
When we went inside the ICU and saw his face, we were instantly hit with an unpleasant shock. The plastic surgery was so extensive this time that had we not known his bed number, we could not have easily identified his face. Around 1/3rd of his face including his lower-lip involved spine-chilling reconstruction. Just a glimpse could unsettle even the strongest of hearts.
A few days later, while still in ICU, my father had given a handwritten note to me – which was a message for his whole family to take him home as the agony was becoming unbearable for him and that whatever time was left for him, he would like to spend it at home. Such was his demoralized (perhaps intuitive) state of mind.
During this time, I was also approached by an expert/yogi of Pranic Healing (a no-touch, no-drug alternative healing system based on the fundamental principle that the body has the innate ability to heal itself). He remotely did some form of treatment for quicker brain recovery. But on retrospection, I thought it was just a waste of our time and money and deluded us with false hopes.
Then on 29th May, we were told that the flap (taken from the thigh) was not responding and a corrective surgery needs to be done. Again he was taken to the OT and a new flap (taken from the chest) was installed over the operated area. The procedure took around 3 hours. A couple of days later they told us that the new chest flap was responding well.
I know I am not a medical expert, but I could not stop thinking about the plastic surgeon’s attempt to first consider thigh flap as the donor area in spite of knowing that the recipient area had previously undergone radiation and hence the chances of a successful microsurgery were ostensibly low. And since microsurgery per se is a difficult and time-consuming procedure, it increased the total duration of surgery to around 20 hours.
Going by a medical layman’s logic, if he would have directly deployed the chest flap (which he eventually did after thigh flap failure), then it would have surely reduced the total surgery time by a critical margin, which in turn could have prevented the ensuing complications, which I have tried to chronicle hereinafter.
My father was shifted to the room after his long stay in the ICU for around 2 weeks. Subsequently, he was discharged from the hospital on 11th June 2019.
At home, he was recuperating although the recovery was far from speedy. During this period, once I had to take my father for a minor procedure to the same Gurgaon hospital’s emergency ward to replace his Ryles Tube as it somehow became blocked. My father was taken inside a simple cubicle labeled as ‘Minor Trauma’. I saw another cubicle nearby which was labeled as ‘Major Trauma’ and had resuscitation machines and other intimidating medical equipment. Fortunately, there was no patient inside it (Unlike as on 26th June 2019).
SECONDARY HAEMORRHAGE/FOURTH SURGERY
While at home, suddenly on 18th June, some swelling appeared around the operated area. The day before, my father had complained about some dizziness on the right side of his head for which he was prescribed a medicine for Vertigo by the operating onco-surgeon.
Just before the swelling, we had also consulted with the Gurgaon hospital’s surgical oncologist. He did a ‘thorough’ cleaning around the operated area and had prescribed some sedatives. But after the swelling appeared and with no relief from dizziness, we went to the main operating surgical oncologist and he told us that there was some blood collection near the operated area and that it had to be extracted in the OT. This time we could observe that even this usually cool onco-surgeon seemed a bit nervous.
The procedure was done and again he was shifted from the OT to the ICU for the 4th time in such a short span. They called it secondary haemorrhage and told us that it could be extremely dangerous and could have even lead to paralysis.
Coming back to the ambulance journey on 8th July 2019, we brought our father to a Kanpur hospital, which was walking distance from our home. He was still in a coma with no concrete signs of meaningful consciousness. Then on 15th July, we shifted him to our home just like he had always wanted.
We had installed an ICU-like set-up in a room by renting a ventilator, vitals monitor and other essential medical equipment. Efficient 24×7 trained ICU staff were deployed and a critical care doctor – an experienced intensivist of a prominent city hospital visited him regularly. Dr.Raghav also visited him whenever required. Another relative Dr.Trivedi, an accomplished cardiologist, supervised his area of expertise.
One night when Dr.Raghav was out of town, my father had contracted Pneumothorax (lung collapse – common in ventilator patients). We had refused to take the risk of transporting him to a hospital. So at around 11 PM, I requested another cousin surgeon of mine Dr.Siddharth and he visited our place and treated it by inserting a chest tube.
Between all this, we had also approached many prominent neurologists of Kanpur. We had a particularly bitter experience with a young neurologist due to his unscrupulous behaviour, whose clinic was quite near my own office in Arya Nagar. His staff had conducted an EEG brain test with invalid results and the neurologist had even signed the report and I was unethically charged for the defective EEG report. Though I was instantly reimbursed when I demanded an explanation from the Doctor on why he had signed an inconclusive report, which was based on an erroneous test.
But surprisingly and even after knowing the critical condition of my father, only one neurologist had agreed to personally visit him at our home and advised us accordingly. Consequently, my father started showing some subtle signs of improvement from a neurological point of view. It made us somewhat hopeful.
But all these efforts and the combined passionate optimism of our family were not good enough I suppose. On 1st September 2019, my father, still unconscious, had contracted a severe urinary infection. His intensivist prescribed him high-grade antibiotics but his weak body was not responding to the medicines. And from 5th September, his vitals: BP, Pulse, Saturation, Body temperature, etc. started fluctuating drastically. At one time, his temperature went down to 93 degrees. Then his kidneys started to fail. I consulted a nephrologist but to no avail.
Until this point, more precisely 5th September 2019, I had continually felt very optimistic about my father’s recovery – right from his first surgery followed by radiation, a second surgery, third surgery, haemorrhage and then even from coming out of a coma. But that day, I finally broke down. I remember feeling extremely irritated, annoyed, and disillusioned. I had never felt more helpless and lonelier in my life than that day. I was not in the mood to be consoled from anyone other than the man who could not.
Eventually, on 7th September 2019, his pulse started dropping to dangerous levels. We gave him several emergency drugs, but it was all in vain. Then, I called the intensivist and he told me: “Life is trying to find a way out of my father’s body. Earlier it was through failing kidneys, now his heart is shutting down.” He obliquely suggested that it is better to leave him alone in peace and not to chase it any further. Meanwhile, I observed that my whole family had already gathered inside my father’s room.
Within an hour, when he breathed his last, my only thoughts were: “Why did my father have to go through those two hellish years including four major surgeries, radiotherapy and coma if this had to be the outcome? What did we do wrong? What could we have done differently? Was it being too late to be cured? Had tobacco already done the irreversible damage it usually does, long before even the first surgery?”
With the benefit of hindsight, things look different. My ongoing rendezvous with the empty office chair opposite mine is persistent. Because he always had a solution for everything. But the answer still eludes me.