My Father

As a daughter I consider my father as a real hero. May be my love for him has made me believe so but I think he has shown utmost grit yet patience, determination yet resilience, will power yet acceptance…not just in his fight against cancer but in his attitude towards life.. Making us so proud of him..I would like to share a figment of his struggle with the disease and our journey together as a family..Hoping that it’ll foster and nourish the will to live, face challenges and celebrate life amongst all..

‘My daddy -the strongest’ is the belief I grew up with. Always on his toes, active and energetic, full of life, delightful storyteller, can fix it all..

For every small little work driving down 40 kms to Chandni Chawk, on his two wheeler; negotiating hard to get best deals with limited resources; getting things repaired standing in scorching Delhi heat; effortfully buying best quality fruit and vegetables from messy sabzi mandies; teaching us math till wee hours of morning during exam time; enjoying simplest of meals with great gratitude and never missing a chance to have golgappas from the corner chaatwala……we never saw him tired,falling sick or complaining.

In his 70’s, he sometimes started having an upset stomach, loose motions or constipation that he would effortlessly manage through self medication and consulting government dispensary doctors. He never seemed to be bothered about it, so other than occasional insistence for a thorough check up, we also didn’t feel the need to fret. He started passing a few drops of blood in his stool sporadically. His dispensary doctors, without investigating thoroughly, attributed it to some local infection or piles. This continued for more than a year, until one day he passed blood in large quantity and told us about it. I took him to a General Physician and he referred him to a General Surgeon. To our utmost shock, just with an internal physical examination the surgeon was reasonably confident that my father had a big malignant tumour in his rectum. I could not believe my ears! I must have asked the doctor ten times if he was sure. He replied in affirmative.

Fighting back my own tears, I was finding it so hard to look into my father’s eyes. He too was avoiding an eye contact for the fear of revealing his angst. He had recently lost two of his brothers to cancer and his youngest brother had it too. He looked resigned.

As we sat in the car I could hear him mumble,“how did this happen”..trying hard to conceal my own distress, I tried giving him a feeble assurance that I knew was hardly consoling. I mustered all my courage and shared the news with my brother at Bombay. We both felt shattered. I wanted to hide it from my physically frail mother but my brother who had more understanding of my mother’s emotional strength insisted that we don’t hide anything from anyone. In hindsight that was a good decision as we did not have that additional burden of fabricating stories. To my surprise my mother showed exemplary reassurance and acceptance giving strength to all of us.

That night turned out to be one of the longest nights of my life. The word cancer kept ringing in my ears and how I wished it was just a nightmare! My husband was by my side , he consoled me and encouraged me to do my best.

After absorbing the initial shock and getting over the ‘why us’ grudge, we decided to face the problem head on.

Someone who has had anything to do with hospitals in India, would appreciate how lucky you are  if you personally know some renowned doctor around. We are blessed to have an acclaimed doctor in our family whose opinion we trust completely. He put us in touch with a team of expert doctors at Apollo Hospital.

A difficult situation like this definitely becomes less uphill if the doctor is empathetic, kind and yet honest. No one else’s assurance comforts you more than the doctor’s. Fortunately for us, going through a contact did help in terms of getting due attention. Our doctor gave us a patient hearing, reacted positively, explained the extent of disease (which was massive) and most importantly, gave us hope.

After understanding everything, my father, a person of strong will power, got over his initial  dejection and decided to extend full cooperation to his treatment plan. 5 sittings a week for 4-5 consecutive weeks of radiation and concurrent oral chemotherapy were planned for him.

Initial weeks turned out to be relatively easy with no side effects. The only frustrating part was frequent machine break down which led to total chaos in schedules. We often had to wait for long hours before our turn came. It would anger me to see the cancer patients being subjected to more trauma and agony… as if they were not going through enough.

Going to hospitals can be most humbling experience. Despite being an expensive treatment we were amazed to see the number of takers for it from all age and income groups of society. Only thing common between them was their suffering. My heart went out for some of those , it filled me with gratitude for what I had. Sharing experiences with other people in the same situation was comforting.

Before I got married I was so used to my father  escorting us every where, fulfilling even our unreasonable demands and taking  care of us always. In 40 years of my life this was probably the first time I was taking care of him. This seemed strange to him as well as to me. I remember while going for a radiation session, we were holding hands and walking,when he mentioned how our roles had interchanged. I realised, The hand I used to hold and feel so secure was now vulnerably clutching on to my hand. I well up even today thinking about it.

One ritual that we followed was having a cup of coffee after radiation session at ‘Café Coffee Day’ at Apollo. Initially he used to insist on it and later as his energy levels dipped, I insisted on it. It was something we looked forward to and would always remember.

My father was braving through the sessions despite of constant energy loss and weakness.We were lucky to have close friends and relatives who stood firm by our side, giving us strength each moment. Some offered to accompany him for therapy, others offered to take care of folks back home, fortifying us with much needed constant emotional brace.

Papa had always been a foodie and extremely fond of green chillies . No meal used to be complete without 4-5 green chillies. He would turn something as insipid as khichdi into a delicious meal by adding all kind of condiments to it. We always saw him enjoying his food and complimenting ‘Wah Bhai maze aa gaya!’

Last week of radiation and chemo was most difficult. Skin of his toes and fingers was cracking, peeling and sore. He had severe diarrhoea. He had lost his appetite by then. It was sad to see his revulsion towards food. His tongue was sore. He could not tolerate a speck of spice or sharpness in his food . Even before I would start serving him food he would spread his hand over his plate to say enough. I would often tear up and lose my own appetite. We had to scold him like a child at times. In his own capacity, he was still trying his best to cooperate and eat as much as he could.

Little did we know then that the worst was yet to come . Last three radiation sessions turned out to be very painful. He got severe radiation burns. Despite taking all repair measures the burns were just not healing. Doctor insisted that the area be kept uncovered for healing. With harsh Delhi winters(end of Dec-Jan) and it being groin and hip area, it was seeming impossible to do that. We hired a person to dress his wounds thrice a day, he started wearing a lungi, despite severe weakness he would try and stand for as long as possible to avoid clothes coming in contact with the skin. We got a light table like stand made to keep over his lower abdomen when he would lie down and then put a quilt on top so that it wouldn’t touch his body. All this was extremely painful for him. He was suffering intensely. Pain was becoming difficult to tolerate and he was getting quieter by the day. He did have bouts of foul temper, we were patient and empathetic.His capacity to tolerate pain and have hope kept him going.

The entire family tried to cheer him up and boost his confidence. He’s fond of playing cards, bhabhi would engage him with that , mom would insist and force him to have a few extra morsels, grand children would sit by his side and fill him up with happenings of the day.

As he slowly got a little better my bother took him to Bombay. It being a warmer place he could air his wound. It was a slow process but it finally healed.

He returned to Delhi after a few months as we had to plan his surgery. After due diligence and research we zeroed down on Max Hospital for his surgery. Doctor was reassuring and reviews about his competency and success stories instilled confidence in us. We still were uncomfortable moving from Apollo to Max as we did not know any doctor personally. I was reminded of a school time friend who I heard was an oncologist and working in Max. I had not been in touch with her for almost 30 years.  Unsure whether she would be of any help I still decided to meet her. My faith in humanity got further strengthened by the warmth she extended. Overlooking the fact that I had approached her for my selfish need of professional help, she went beyond her profession to help us deal with the situation even emotionally. Despite her busy schedule she gave us the liberty to ask her anything, any number of times. Those who have ever been in a situation like that would know the huge importance of such an aid.

We were told that tumour was big and the position of tumour was such that they will have to remove the rectum permanently. An alternate passage for passing the stool would be created, pulling the intestine out through the side of the stomach. A colostomy bag would be stuck there to collect stool which would need cleaning from time to time. The bag would need changing every few days. Sounded impossible! Doctors at Max and Apollo reassured us that once accepted it is not that difficult specially when there was no better option. 

On the other hand there were well wishers and some government doctors who advised us against getting any treatment as he was already 78.What really hurt me was the fact that all these people and many others were ready to write him off looking at his age without considering the fact that he was more active than a 50 year old and healthy otherwise. Some even went to the extent of telling us to not torture him by making him go through all this. After rational evaluation and discussion within family we decided to go ahead with the treatment as we had faith in the doctors we were consulting.

Surgery went off well but left my father very feeble. He had lost more than 12 kgs of weight by then. His immunity level went down and was now more prone to catching infections. Another complication arose when my father developed urine incontinence and frequent urine infections, after surgery. He had to be catheterised for lifetime. Handling the colostomy bag was a challenge. My father hated being dependent and his conscience needled him every time I helped him clean up or change the bag. He desperately wanted to be independent.  His strong will to do so made him handle the cleaning part all by himself very soon. He then just needed my help to change the bag which was easy.

My mother then took over complete responsibility of his diet. We started giving him wheat grass juice every morning without fail. Kachchi haldi, garlic , amla powder and tulsi are some of the condiments my mother ensures we all have with our meals. Soups, pomegranate , salads, eggs, curd are other compulsory additions we made to his healthy diet of dal, subzi and roties.  Green tea also became a  part of an everyday routine.

Knowing the fighter my father is, I am so proud to share the fact that he was totally independent and mobile despite all these complications for more than four years. He re-bounced and was back to his ways. Gracefully handling the two bags attached to his body, he would take care of not just his own needs but also all maintenance and repair work of our huge house; would drop and pick up kids from their activity classes; he would buy our fruit and vegetables, submit the bills, do all the bank work & much more and socialise too!

There were fears of the disease coming back but we tried to live for the moment and be grateful for every day well spent. We started celebrating festivals with more fervour and joy, we made more efforts to get together often, we have been more forgiving to one another and we are so thankful to God….

Well, disease did come back, it was inevitable. He underwent more treatment but never lost heart, lived and laughed each moment. Now on palliative treatment, he lives in the gentle care of my brother and bhabhi. Bhabhi still tries to play a game or two of cards with him though he’s fuzzy about the rules he taught us and knew so well, she gives him his favourite foods though he has no appetite, she and my brother handle everyday crisis with utmost affection and sincerity and look after him just as Papa used to look after us as children, they take care of all his needs. My ever so frail mother has learnt to take care of herself and tries to not put an extra burden on anyone, still insists on Papa to eat a few extra morsels and still tries to give us strength. His grandchildren still show their affection towards him in their own ways. When I am with him, we sometimes huddle up on his bed and listen to his favourite hindi melodies and he still loves to sing along with little insistence.. I try talking to him everyday on phone whenever he’s awake which is not so often and putting aside his debilitating pain, he says… “sab maze mein ..”