Time to tell folks about what I do – for the last twenty years I have been working in the field of cancer care ; Cancer Awareness and Education, Prevention and Early Detection, Counseling , Palliative Care ….and for exactly five years now now I have been working with The Max Foundation. www.themaxfoundation.org A major portion of the work I do has to do with looking after people and their families facing a diagnosis of two specific kinds of cancers one of them a form of leukemia. We have all come together as a very unique peer support group calling ourselves “Friends of Max” and spend whatever free time we have catching up with each other – face to face or on cyber space – each one of us seem to feel incomplete if we have not had some kind of communication every day . so many of us , all over the country and communicate every day? Yes there might be a few raised eyebrows but yahoo group zindabad – blog Bandhus zindabad.Our motto is Together we Share and Learn and that’s exactly what we do – all the time share and learn .
I must , before I say anything further , put on record the incredible generosity of Novartis , the Pharmaceutical Company that gives at no cost Glivec , the magic bullet that keeps our Friends of Max on top of the world.
Some pages from my diary I want to share with you all from ‘The Book of Stories” we bring out every year so we can all share and learn ……
Nobody asked me to tell my story but I desperately want to say a few things .All of you who know me know how difficult it is to shut me up when I begin talking and also yes, writing , so maybe that is why nobody asked me .
But indeed it was me who asked everyone to write their “story” . Isn’t it strange, calling real life, excruciatingly real and live being termed as a story? I am surprised not one of you turned around and said “What do you mean ‘ our STORY’? We are having real life experiences here not some fairy tale or” ghar ghar ki kahani “ . Instead each one of you just put down your lives on paper and gave them to me – just like that . for this alone a very big Thank You . Some of you thought it an honour , some were happy to share , others wanted to share after learning from others that it was indeed possible to talk about yourselves – and Rajeev wrote only because I threatened never to hug him again –Hey Rajeev, caught you there –I would have never carried out that threat !!
My favourite writer P G Wodehouse once said “There are two ways of writing …(one is ..) a sort of musical comedy without music and ignoring real life altogether ;the other is going deep down into life and not caring a damn.
My friends of Max here have chosen the latter and definitely not given a damn but I can hear music in their stories and the magic of pure laughter in these outpourings. These are not stories but songs set to the purest of melodies taking me on the wings of love and laughter to a place where there is only hope and happiness and lessons in yes, love. Unconditional and uncomplicated love.
Seriously, it is all about love and learning, both timeless and endless. One can never love enough, one can never learn enough . So you keep on loving and keep on learning and take everyone you meet on this voyage with you. This is what the last five years with all of you has meant to me. So much of love and so much of learning.
I have been allowed to witness the trauma of families who have been sucked, helpless and floundering into the vortex of a life threatening disease and then seen them rally around and with the twin weapons of love and faith emerge strong and secure in their love for each other . In the end love is all that matters; all you need is love.
I would like to share with all of you a couple of “ stories “ from my diary..read on
I spent a major portion of today with two fathers and their respective sons . Ajay, newly diagnosed and only son of his father Nandlal and Ashwin, newly diagnosed father and his physician son Sushil –
their love and concern for each other , their courage and faith in each other , their reversed roles of care giver and protector in one to the other taught me all over again why I am at once proud and humble of the work we are doing.
Ajay’s father came on his own with the application from his physician, but believe me, even though Ajay wasn’t there , in every nuance of his father’s expressions and his loving manner while speaking of his beloved son I could see the boy as vividly as though he were sitting in front of me. It was apparent that putting aside his grief at the trauma of his diagnosis , foremost in his mind was the well being of his son in whom rested all his aspirations. Such pride and joy when he spoke of Ajay , wanting nothing to come in the way of his ambition of becoming a computer engineer , hiding the heart break and the feeling of hopelessness, telling himself more than me that he would do everything to see his son live his life completely and did all he wanted to do .
And then in came young Dr Sushil , a general physician practicing in the inner city , with the application for his father who used to drive a taxi in the city before he retired . The role reversal was so poignant – Sushil was ready to go to any length to protect his father from the knowledge of the severity of the diagnosis telling me how all he wanted for his hard working and tired father at this period in his life was peace and a stress free life and how he would bear the responsibility of seeing he got it . It was his father’s tireless and selfless years of driving a taxi in the hot and murderous roads and traffic of Mumbai that had paid his son’s way through medical school and Sushil was so thankful that he was going to get the best treatment in the form of Glivec.
No time is better spent than the time we get to spend with our patients and how much they teach us , how much of life and its vagaries we get to learn !!! respect and consideration , pride and selfless devotion and above all the desire to shield a loved one with all one’s might – today I learned what it is that makes a father – son relationship so very precious.
This ray of sunshine walked into office half an hour ago. Shivam. Studies in 6th grade and would love to play cricket the whole day - “par Naani ji nahi maanti” (but my grandmother will not allow that) Diagnosed in January this year - lost his Mom and Dad to Tuberculosis five years ago and lives with Naani ji, Mom’s Mom - who has two teenaged sons herself "Han, kabhi kabhi jhagda karte hain lekin hum log Masti bhi bahut karte hain!!!"
(Yeah, we fight but we also have great fun together!!!) Naani ji works as domestic help in a couple of houses and they live in Pune. They will return today to Pune as there is nowhere they can stay here in Bombay and tomorrow after Naani ji will finish her work in the two houses they will come to Bombay to collect the supply - by then the formalities will be done and Novartis will sign the release letters. Guys, this picture doesn't say enough, doesn't say anything at all about how bright and beautiful this boy is. My heart, as I write to you all is bursting with love for him and I mean EVERY word of this last sentence. All the while he was here that crinkly smile never left his face and now I cannot wipe the smile off my face. Is it possible for one person to make another so happy? I feel like I have seen and understood the meaning of this whole world in the unquestioning acceptance I have seen in Shivam - of everything that has happened to him in his 13 years. He simply radiates joy and love –
Sweet, shy, simple uncomplicated Shivam. I cannot wait to see him again.
I met him first almost four years ago, weak from Interferon therapy, alone and friendless and very afraid in Mumbai, around 21 years of age ( he comes from UP). Some pehchan walla from his village had guided him to his pehchan walla in Jogeshwari and he was totally lost. Once on the programme and on the magic bullet Glivec he soon began to feel physically better and when he came to meet me the next time he was looking so much better but still restless and not knowing what to do to keep himself busy. I spoke to his penchan wala ka pehchan wala to see if they could put him to some work . Sab ko yeh phikar thi ki isko who wali bimari hain...after convincing them that nothing of that sort need worry them he was taken on in a bakery . It seemed to be the best thing that ever happened for Mohamamd seemd to found his calling...everytime he would come to see me he would literally be blooming - looking better and better and loving what he was doing..baking pastires and cakes and bringing samples for me.
One time he said to me , Mummee, mujhe koi hotel mein kaam dilva deejiye na ..main isi line mein kuch khas karna chata hoon..mujhye yakeen hain main bahut achha karoonga ....
It was such a coincidnece - I met Vithal Kamat at a book launch that week itself and just casually I asked him if he would have place for a trainnee in his hotel Orchid ( it is another story how VK let me have a patient group meeitng in his hotel for over 350 with chai and dinner thrown in ..on the house ) for a leukemia patient who had what it took to do well in life - belief in himself and the willingness to work hard and learn...and VK took him in, just like that ...this boy then worked and worked , without a break or without taking leave , sending someone to pick up his supply, taking a day off only when he had to see his doctor...today he has been made a permamnaent employee of the hotel, promoted, bakes the most lazzeez pastires and just look at him will you ...my pride and joy
He calls me Mummeee and I just love him so much...he made my day today when he came with his father and a wedding invitation – his .
Today Alfreda came to the office . From Tata Memorial Office after her Bone Marrow Aspiration. As always she was full of chatter and laughter wanting to ask a hundred curious questions and wanting answers to all of them even before she finished asking them . Every once in a while she would hold on to her lower back and grimace in pain – the needle was very big and the doctor was tired , more tired than I was after the procedure , she said to me with an impish grin on her face . I asked her if it still hurt and she quickly lay down flat on the ground and said No – see I can lie down !!
Up in a trice she dug out cards she had made for everyone in the office and was happily distributing to them around .
Next she very proudly she took out some newspaper cuttings and showed them to me . Alfreda in her crisp white school uniform receiving a trophy from Sonia Gandhi – Courage Award from the Calcutta Telegraph for going regularly to Tata Hospital for her Bone Marrow procedures year after year . For coping so bravely and cheerfully with the diagnosis of Luekemia
Alfreda , all of five years old and so brave and matter of fact.
Tall and broad shouldered, incredibly handsome ,eyes a warm amber never without a smile in them , a fine figure of perfect health ,
persuasive with a voice that can cajole a parrot off its perch Ashish is someone who can make you abandon anything you are doing and go along with what ever he wants you to do . I have never seen him open a door with his hand or use the door knob..he will come into a room simply with a shrug and heave of his wide shoulders and then envelope you in his warm hug. You are putty in his hands. Especially when he is never without the trademark flowers he brings for us .
I met Ashish during the early months of the programme and my first memories of interacting with him is when he gave me a ride to an important appointment I was late for . Viji ji , why are you so worried , come I will drop you na and since then there has always been this feeling that I can just take my problems to him and he will solve it –anything , everything except telling us his story ; Arrey Viji ji , aap batao meri Story – you know everything there is to be known about me – so go on .
So here I am telling Ashish’s story – as he told it to me in bits and pieces over all these years I have known him , as his life has happened to him over all these years .
Ten years ago , when he was twenty years old , a fresh graduate doing all the things twenty year olds did including “line maroing” all the pretty girls in his college ( yes you must say that he tells me) he took a train ride that changed his life. Boarding a Churchgate bound Western local from Goregaon that evening all he had in mind was having a good time with his friends who were waiting for him.
And then he fell off the train – somewhere between Lower Parel and Elphinstone , at 8 in the night and lay there between two fast locals whizzing their way on either side of his inert figure just missing the tracks . All he remembers is that for a long time no one came his way and he drifted in and out consciousness. He next remembers a havaldar coming with a helper and being put on a hand cart and taken to the platform.
He has vague memories of an FIR being filed, questions and answers and forms and shock and pain and then being taken to a hospital the pain in his shoulders becoming unbearable . He knows somehow he got in touch with his brother Sandeep ( how I wonder he tells me , in those days did we manage without cell phones) and Sandeep and his Bhabhi were there beside him .
Only a dislocated shoulder by the grace of God thought everyone till the nagging, persistent low grade fever necessitated blood tests and a shocking diagnosis of CML raised its ugly head changing his life forever .
Hydrea , Interferon , hopes of being enrolled in the STI571 trials coming to nought but all the while going on with life – setting up a flower business with his cousin , helping his father out with the family catering business his days began at 4am and went on till late night .
Glivec finally brought his enlarged spleen back to normal and brought his blood counts under control .
With Pratibha his sweetheart turned wife by his side – I don’t know why she married me –ask her ! he went about the business of living with CML , and became one of the first friends of Max , dropping by our office whenever he would come into town or to see his doctor .
At the Max India office he is our consultant for all things important in life – from what to order for lunch for the three of us to how to organise food for the 1000 odd participants we expect to come for our meetings.
These days we, Pratibha included, have to share him with this beautiful girl who has taken over his life completely – his absolutely adorable little daughter.