It was Wednesday morning. I had made my way to OPD .I received the call. The one I had been waiting for. After long weeks in palliative care, she had finally started sinking.
Suffering from rheumatoid arthritis for decades on multiple disease modifying pills and weekly injectables , she developed difficulty in deglutition towards the end of October 2019.
On evaluation , she was diagnosed with cancer of the lower end of the food-pipe (oesophagus). On opening up about the big diagnosis , we were all frazzled and helpless beyond despair.
The intrusive thoughts of ominous big ‘C’ crept in sneakily and messed up with our lives. Although, the journey had just started, but being a medico , I was foreseeing the grueling journey ahead .
Multiple consultations from many of my colleagues in-house and outside the valley suggested the treatment plans which required radiotherapy, chemotherapy and maybe surgery if feasible .The radiation protocol was planned to kill the monster.
Cycles after cycle to irradiate the body stereotactically only to kill those cancerous cells which had forgotten to die. All attempts were in the way to revamp the synchronised orchestra of the sheet of music of life.
The cells had already lost the pitch and rhythm of synchronicity of growth and division. The symptoms improved after completing the radiotherapy sessions and she started taking solid food and all of us squealed in excitement .
The months passed uneventfully. We were almost hysterical with relief then, freed from our grinding responsibilities for a brief time.
But , the monster didn’t die and she started craving for breaths all of sudden. The toxins of the monster clogged the breathing channels and she started gasping for breaths. We quickly shifted her to the hospital and attached to high flow oxygen. Her ragged gasps came farther and farther apart, her chest barely rising with each shallow breath. I started counting off the seconds between each one, my eyes glued to the sweep hand on the clock. But, somehow the efforts made by us as a team got her out of the monster’s nest miraculously. We plugged everything into the blood from antibiotics to blood thinners. Now, she could breathe spontaneously without supplementary oxygen and was discharged home after a few days.
As a warrior she fought the monster with all the might .Even as the chaos and terror swirled within, she began to equip herself. She slid her feet into battle-worn boots, picked up her battered sword and shield, and stood. As the monster raised its head, she raised her sword. And the war continued.
She was seemingly well for another few months when she complained of severe low back ache with weakness of limbs. Scans revealed broken fractured spine bones ( vertebrae ). We never wanted to see her bedridden as she was always active and would enthusiastically participate in all household chores. We ascribed spine fractures to steroids and her crippling rheumatoid disease. Thanks to my colleague and friend who fixed the spine to make her active again without any residual pain or weakness.
But things didn’t end up here , the primary symptoms of swallowing difficulties recurred but this time with excruciating bone pains. And ,I could understand now the sprawling, strange monster has pounced back. I consulted my friend and gastroenterologist for review endoscopy which revealed totally obliterated lumen of the food-pipe. Scans showed now lesions in the lungs and bones. In despair but hope against hope, we decided to go for exhaustive chemotherapy bearing all toxicities. The painkillers to keep the monster at bay were turning her into a querulous, petulant, mean-spirited stranger .
Infusing three to four weekly anti-monster toxic drugs for months made her feel weak and fatigued but now she could swallow and taste the semisolid food stuff pumped with appetisers .But, altogether the picture was grim as I knew in the heart of my hearts , she will not live long.
During my times of distress, I have seen my sorrows and melancholy unloading on sturdy shoulders but I fathom the strength driven from prayers. And, most importantly, from my wife, a doctor herself: how crushing it would have been for her to keep a good head and not forsake the glimmer of hope in the light of her professional inferences.
My mother -in- law was very sensitive but pretending as if she didn’t know anything about the disease process. And, I would wonder how passionately she had been working, striving, deferring gratification, waiting to live and learning to die.
The winter had come and the temperature dipped down to under zero, so we decided to shift her outside the valley to relieve her rheumatoid bone pains. She never felt well the day we had infused her with toxic anti-monster chemo-agents .One fine evening, I found out that she could no longer swallow even liquids now .We had exhausted all the options of cure. The monster stalked the land, was hiding in plain sight, waiting for just the right moment to pounce. This time pounced with full might .I consulted my seniors and fellow colleagues to know what next ?
Now we had no option but to choose between getting a palliative metal stent to force open her food-pipe (oesophagus) or getting a stomach tube through her abdominal wall for medical nutrition. “Making lemonade out of lemons,” we sought to put a metal tube in her esophagus with unanimous decision so that she would be able to indulge in the pleasure of eating delicious food again. We wanted to make each day the best possible for her to free her from emotional pain, physical discomfort and anxiety.
But to our misfortune, the procedure did not go smoothly and she developed cardiac and respiratory arrest on the table, possibly an anaesthetic complication .I was waiting outside and after being called hurriedly got into the endoscopy suite, I found her listless and ashen-faced, barely conscious but moving limbs. She was being ventilated with Ambu Bag , cannulas in the veins, ECG patches on the chest and torso alongside a plethora of aesthetically pleasing co-saviours in scrubs. Looking at the cardiac monitor trace after another and the accompanying “beep-beep” rekindled my hope for her survival. She was shifted to the ICU from the Endoscopy suite. We were all wracked with guilt as she had come to the hospital walking and now she is comatosed on life support.
After a few hours she woke up from a deep coma and was feeling groggy, pointing her hands towards the chest and looking awfully at tubes and attached wires. Gradually, the assisted breathing support was weaned off and she resumed her spontaneous breathing although high flow oxygen tubes attached to nostrils .After a few days ,we went home back after being discharged but she ploughed back through all old memories. Surviving a tussle with this beast almost always makes food taste better, grass look greener, life more fulfilling but not without challenges at all stages.
When she was discharged from the hospital, we were happy she would taste the food . She really needed to eat because she was too skinny already.
For the next few weeks she laughed and joked, completely cognitive, coherent … lucid. A lifetime of memory had returned, and we took advantage of it as she regaled us with escapades from her past.
Weeks passed and all of sudden she started vomiting profusely. I called my friends from gastroenterology fraternity and they guessed that maybe some little piece of food like a grain of rice was stuck low in her oesophagus that was triggering the vomiting. It took a long time for it to stop. After that, she only ever had liquids and purees. She was bedridden with no craving for even her favourite foods. Days passed and she developed all symptoms of malnourishment and dehydration .We were helplessly watching all and could do nothing but infuse bottles of IV fluids and vitamins to maintain her skin turgor .
She was now bedridden, sick with no worldly desires .The feelings of those last days were of a retreat from the world, a seclusion. She had physical pain of monster toxins and emotional pain of leaving us .
On receiving the call , I hurriedly left my Wednesday OPD ,reached home and found her in bed across the hall in the endgame of Stage 4 disease . She is nearly 62, she has had enough suffering and watching her struggle with cruel monster and its toxins was agonising. All the near ones had already arrived, sitting around in despair clamouring for answers. The day passed in utter silence and the long night arrived .Death was crawling between her blankets.
It was the last night and we all took turns sleeping on the floor beside her bed holding nd kissing her hands . She was restlessly messy, the way people are in the grip of terminal delirium. We were turning her left , right , making her sit but she was restless and her speech was incredulously incoherent .
She was turning blue and getting bloated up as the cruel monster was throttling her vital body systems .Her kidneys stopped forming urine, extremities turned blue. As medicos, me and my wife, now understood she is standing before the abyss of death. She is about to breathe her last breath.
In spite of our access to the latest healthcare we were befuddled and powerless to help her out of the cruel monster’s clutches. With moist eyes we are witnessing her rattling breaths turn into a longer silence… no more breaths , cold and calm peripheries but open eyes … saying good-bye to us !
I have no words to describe my feelings at this point of time when she was dying. Of course, there are many feelings, but the feeling that pervades the ending. The feeling of the last days. It’s an emotion born out of a strange mix of opposing desires. Of waiting and not wishing to wait. Of wanting time slowed and wanting time quickened. Of wanting an end to what is happening but never wanting the end at the very same time.
Everything seemingly ended and we all cried “Mum, don’t leave us”. But she had gone far away behind the curtain; I could hear her saying in deafening silence:
Don’t shed any tears, don’t lament or feel sorry.
I’m not falling into a monster’s abyss.
When you see my corpse is being carried,
don’t cry for my leaving.
I’m not leaving; I’m arriving at eternal love.
When you leave me in the grave, don’t say goodbye.
Remember a grave is only a curtain for the paradise behind.
You’ll only see me descending into a grave, now watch me rise.
(Maulana Rumi)
The author is Consultant Cardiologist GMC Anantnag.
DISCLAIMER: The views and opinions expressed in this article are the personal opinions of the author.
The facts, analysis, assumptions and perspective appearing in the article do not reflect the views of GK.