‘Aai’ is a topic closest to heart for everyone! So the million dollar question was ‘What do I write?’ I pondered endlessly...but words betrayed. There is so much to narrate about her, there are so many memories...there is so much learning!
To begin with, a slight introduction of my ‘Aai’ – Sandhya Joshi...a voracious reader, an analyst, a rationalist, an atheist! At the same time an affectionate, sensitive, extremely caring and affable personality. I think these adjectives would have pretty much summed her up! But I was mistaken! In the past three years I witnessed many different facets of her personality unfurl magically. Going back to my growing up years I saw a woman with progressive thoughts..pretty much ahead of her time! She never succumbed to overly orthodox thoughts and rituals. She never held Haldi-Kunku at home because in principle she was against the practice that discriminated women only on the basis of presence or absence of their husbands. She always wanted a career. She wanted her own space. She always helped the needy and poor. She always fed the under-privileged. She always looked after her parents and relatives who stayed with us for either education or work. Net –net an intelligent and loving woman with a golden heart. Post a Banking career of about 35 years she was fed up of her routine and opted for VRS in 2014 from Bank Of India. A new chapter of her life began. A pleasant one! Only for about a year!
In Nov 2015 she visited our family doctor - Dr. Umesh Date - for some minor neck ailment. Dr. Date observed that her stomach is protruding abnormally. A cyst was detected in her abdomen which contained dirty fluids and needed to be removed.
This is where the story begins! This is an account of my mom’s journey which is full of moments of picking up the pieces of life and starting once again and once again and once again.....a journey which is still on... .....and one where she has emerged a brave survivor, magnanimously!
On 30th Nov 2015 she was operated in Fortis hospital, Mulund to remove the cyst. Post the surgery there was increase in the abdominal pain right up to her back and her shoulder. Her breathing was heavy. She was in immense discomfort. This situation continued for about 2.5 days. The third night she was unable to breathe and was rushed to the ICU and put on bi-pap machine for easy breathing. Numerous tests were conducted and there came an unexpected blow to all of us when she was diagnosed with Acute Pancreatitis! We had never heard about this disorder till then. The worst part of this ailment is - it has no medication. The pancreas have to contain the secretions by itself. Nothing can stop it. Every day was like a roller coaster ride. One day she would be fine and the very next day there would be complications. Gradually the pancreas settled down. Post two weeks of ICU followed by HDU, followed by ward she was fine to go home. Then started the painful process of discharge formalities! I wasn’t aware till then that discharge is such a painful process and requires immense coordination and patience. We came back home, only to go back to Fortis in about a month.
When we were home there wasn’t a single day of comfort. Everyday there was a new health issue cropping up. We admitted her locally in Dombivli but her case was beyond their reach. There was pus collection internally and the pus was so thick that it was stuck to the internal organs. Hence it needed to be removed and hence an SOS surgery was performed on her. This second surgery was done in Fortis on 17th Jan 2016. Again a series of ICU, HDU, ward, discharge formalities, ambulance and then home!
Days passed by but she was still uncomfortable. She had lost tremendous weight. She didn’t feel like eating. Started having fever, nausea and other such symptoms. Dr. Date suggested a change of surgeon and we found an expert associated with Joy hospital Chembur. We were full of hope. She was full of hope that he would cure her. We got her admitted in Joy hospital for treatment. There was a leak in her large intestine and hence the abdomen needed regular washing. This is a mini OT procedure which is to be conducted every day. When they thought she is fine they discharged her only to come back with high fever. On 17th March 2016 a small endoscopic procedure was conducted to clip her leak. But that attempt failed as they figured that the leak is bigger than they had estimated. There was no option to a surgery. Life was playing hide and seek. But she was determined to face the challenge despite having lost all her health and despite undergoing two surgeries back to back. And now third one!
In this surgery something had to be done that altered her entire life. Her rectum (end part of the large intestine) was brought out of the body. This part called stoma needs to wear a stoma bag which collects all the waste from the body through the 24 hours. This bag became her friend for the next two years. Also the surgeon had chopped off some part of her large intestine and stitched together remaining sides. She sailed through the surgery third time around. We came home post the routine of ICU, HDU, ward, discharge, ambulance and home. She was fine for a month. Hope and happiness swelled in our hearts. And suddenly the happiness and hope looked illusive. She started staying ill, had fever, nausea and lost all her health. She hardly moved in the house. Started staying in her bed and became extremely weak. It was a terrible sight.. She became as light as 38 kgs!
Actually a leak was formed in her stitches. This will be gross to read but the large intestine contains all the waste of our body – basically our poop/shit! A leak in it meant that small microscopic drops of poop/shit entered her abdomen everyday for over a month. Just imagine the gravity of the septic around all the critical organs in her abdomen. This impacted her health immensely. This leak had to be stopped and there was no option but another surgery. Dr. Date recommended a change of surgeon and we finally met the divine in a Doctor who practices in KEM hospital, Global hospital and Jupiter hospital. He decided to operate on her SOS and we landed in Global hospital, Parel. Her fourth consecutive surgery took place on 1st June 2016. This was a matter of life and death. We could have lost the battle but with immense will power, god’s grace, our prayers she sailed through the surgery. Post her fourth surgery she was in the ICU for 1 month. She lost her voice due to stress and wouldn’t speak. We were allowed to see her only for 5 minutes thrice a day. She was on the verge of losing hope and maybe life. I can only imagine what she would think of in the ICU for 24 hours a day for entire 30 days! Meeting family was meagre 15 minutes in the entire 24 hours. I don’t know what and how she had so much of patience and perseverance but she held on! It is so unnerving to imagine yourself - almost dying... in solitude.... in some hospital... battling a rare disorder! I am scared of even imagining.
Doctor recommended that since stoma care is better in Jupiter we should move her there. We carried her in an ambulance from Parel to Thane. She could only see the passing trees through the ambulance but that day she was grateful to the Universe that she was able to see those trees. She hummed songs all through the way. I really salute her spirit! In this fragile condition who would have thought of singing songs and enjoy the trees! But she did!
Her condition had worsened so much that she was put on parenteral nutrition in Jupiter which by itself is an extreme form of nutrition. She was so weak that she was unable to hold a knife or a spoon. She was in Jupiter for her treatment for 1.5 months. There was indescribable weakness, immense insulin fluctuations, innumerable situations where her body reached MDR – Multi Drug Resistant – this is a stage of the body where no drug works on it. Then she had to wait for 7/8 days for the drug to work on her. There were infinite allergies and side effects and still she was hopeful and sane. Most importantly sane! Not at ounce of anger not an iota of impatience ....only hope and will power. Gradually she gained some health post which we came home. Every day was a struggle post that! The stoma bag is difficult to manage and comes with its own set of challenges.
She struggled with the stoma bag for the next two years but simultaneously rebuilt her health and her life too! She monitored her diabetes closely, researched on how it can be controlled, put an extremely systematic routine, started walking gradually, eating the right amounts of various nutrients, started taking charge of her house, her kitchen and her life! In no time she was cooking all meals for her and dad, going out for a walk for 45 minutes, going to meet her parents regularly in the evening. The only problem was the stoma bag and she was determined to get the final surgery done where the bag would go away and her rectum would be put back in its place.
Post various tests we decided to take the plunge and get the final surgery done. Her fifth surgery took place on 18th May 2018. The rectum was put back in its place and the bag was gone! She was very happy. But God wasn’t too happy that she was happy! Third day of the surgery there was a leak formed in the intestine. She had to undergo another surgery, sixth one to be precise, to manage the problem. The intestines had become supple and hence the stitches came off internally and hence this condition.
With the sixth surgery she and we were very hopeful that life would be back to normal. She showed immense progress in four days. But as fate would have it, on the fifth day another leak was formed. Now we were back on the threshold of life and death. It was impossible to keep the situation as is and it was impossible to operate as well! All hell broke loose. Nobody knew what decision to take. She had no life in her eyes. I saw defeat in them. She seemed spiritless that day. There was only one option – another very risky surgery... bringing out the stoma again and living the rest of the life with stoma bag’s support...She was tired of the grind. She was tired of surgeries. She was tired of hope, I guess! This surgery lasted for about 3 hours in which an hour was spent on closing her abdomen. Aai was critical. She was put on ventilator for 8 days. We prayed every minute for her to survive this one. During her ventilator days she was also sedated. So we could not communicate with her. When she gained consciousness we communicated with her through signs and actions. She wanted to speak but couldn’t because of the pipe. Her hands were tied to the bed on both sides so that she doesn’t make any aggressive hand movements. It was an incredibly painful sight to see. I cannot imagine the pain she was going through. Once she gained complete consciousness we had to tell her that the stoma bag is back on her. But she accepted it gracefully.
Her path of recovery has begun since then. There were thousands of moments where we were on the verge of losing the battle but nothing dampened her spirit. Hers is a story full of failures but its not a story of failure...Its a story of her determination, grit, and undying spirit. Though the attempts have failed.....she has not! As the song goes – ‘It ain’t over, ‘til it’s over....’ And it certainly ain’t over for her....
With trembling lips, shaking hands and moist eyes, I simply salute you!
Ms. Bilwa Abhay Dhayagude
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