Wings of hope - Saroj Gupta Cancer Centre and Research Institute, Thakurpukur, Kolkata

Cancer kills. But that is not the worst, it strips a family bare till what is left is the indignity of it all. The disease and the corporate hospitals have ravaged my family a number of times. Within their sterilized walls and behind their stiff linen they have played on sentiments by prolonging the inhumanity of the disease they well knew was beyond repair.

But then each incident is a step on the learning curve, and I have had quite a few, so it would be pretty dumb of me not to scratch beyond the flower vases, the elegant cafeterias and the smug doctors. Fortunately for me, I managed and learnt with great joy that cancer though quite a killer, need not always unhinge the likes of me.

Here is an account of a place that I saw and liked. It has been almost a year that I am volunteering for them and I am yet to see feet of clay. The simple fact that cancer care is affordable and not all hospitals charge medicines on mrp was the starting point of my journey into this facility.

Take a look at their children's centre for cancer care and spread the word.

She is making friendship bands. A little girl of seven, she weaves the multi-coloured strings with concentration. The room, a cheerful pink and purple is full of natural light. If it was not for the give-away face masks, it would be impossible to tell that Shreya and the other children in this room, so engrossed in activities, are actually undergoing strenuous cancer treatment.

Anjali 10 was diagnosed with leukaemia. No one in her family had cancer, so her parents were shocked when the body aches and fever she had for a few days turned out to be cancer. Her mother thought, at worst, it was rheumatoid fever, which was in the air around that time. A blood test showed Anjali had acute lymphoblastic leukaemia, the commonest juvenile cancer—fatal if not treated quickly, but with very high chances of a cure if diagnosed within three weeks. She spent the next few months in and out of hospital for radiation, chemotherapy and injections. “If it had not been for the expertise of her doctors and the therapeutic approach towards Paediatric Oncology that we received at Saroj Gupta Cancer Centre and Research Institute (SGCC&RI), Thakurpukur, Kolkata would have been a lost battle for Anjali,” says her mother. 13 now, Anjali has regrouped to her usual routine of school, art and dance, with fond and not grim memories of her hospital stay. She visits for follow ups only.

Celebrating 24 years of exemplary existence in Kolkata, India, indira Manik Children's Hospital, a part of SGCC&RI was inaugurated by Mother Teresa in 1991. Modelled on the lines of Disneyland, the hospital stands amidst an amusement park, vast landscaped greens, a fountain and a functional toy train around beautiful water bodies.

                                

Creating patient-centred cancer care

The founder of SGCC&RI Padmashree Dr Saroj Gupta is recognised worldwide as a legendary figure. His life was dedicated in providing the best possible cancer treatment for all. In early 1973, seeing the plight of cancer patients who failed to get even a bed, not to mention cancer care, Dr Saroj Gupta, then a young radiotherapist, formed a Society with a group of doctors, social workers and philanthropists.  His mission was to form a Cancer Centre for the afflicted patients and their families. SAROJ GUPTA CANCER CENTRE and RESEARCH INSTITUTE was conceived initially to provide a sojourn to the distressed cancer patients who came from remote villages for treatment.The first fund-raising event was a drama staged by a group called Sikha, based on a story written by Dr Saroj Gupta, where he himself enacted the role of a poor cancer patient who was denied a bed in the city hospital. Many in the audience became a part of the Society and joined hands with Dr Gupta to help him with his fight against Cancer.

His vision is carried forward by his sons, Anjan Gupta, honorary secretary, SGCC&RI who left a flourishing architectural practice in America to volunteer his services to the hospital and Dr Arnab Gupta, one of the best surgical oncologists in India and director on-board, SGCC&RI.

“The best is what we believe in and we do not compromise on that vision. We are confident of our holistic approach towards cancer treatment that minimises the emotional and financial drain that families afflicted are forced to undergo,” says Anjan Gupta confidently.

With world class amenities and a gifted team we help in treating

·       Acute lymphoblastic leukaemia

·       Acute myeloid leukaemia

·       Ewing’s sarcoma

·       Germ cell tumours

·       Hodgkin's disease

·       Non-Hodgkin’s lymphoma

·       Osteosarcoma

·       Tumours of the central nervous system

We also provide:

·       Bone marrow transplantation

·       Non-malignant haematology

Patient support services

Specialists take care of children and young adults across a wide range of different conditions. The actual treatment is supplemented by various therapies, psychological as well as occupational. Teaching staff are available to ensure that children do not miss out on school work inspite of long hospital stay. Mothers stay free of cost with the child. A serene surrounding in the lap of nature allows abundant fresh air and sunlight to the children. The ones who are not confined can enjoy toy train rides and the benefits of the amusement park. positives reported by patients include pain reduction, relaxation, increased energy and a reduction in the side effects felt from other aspects of treatment.

Dr Arnab Gupta with his child patients

 My thoughts found an echo here. “Cancer robs people of their mental peace. Especially in case of small children, it is agonising for parents to see the undeniable pain the little ones have to suffer, the ones that should not have to bear anything beyond grazed knees and scraped elbows. Our team is continuously trained to keep the children healthy mentally as well as physically and ensure they are battle ready,” says Dr Arnab Gupta as he hops on to the toy train with his patients.

·       Studies show a direct link between increased urbanisation and childhood cancer worldwide

·       Only 5 per cent of childhood cancer is hereditary; 95 per cent of the causes are external factors: viruses, pollution, radiation etc.

·       The commonest childhood cancer is leukemia; lymphomas, brain tumours, tumours of bone and soft tissue rank next

·       Perhaps the only good news about childhood cancer is that, unlike adult cancers, the cure rate is high: 75 per cent of childhood cancers are completely curable.

I wish I knew you before I got married...

When I was growing up I had no concept of a virtual friend. There were pen pals, but I didn't see the point. A friend was someone I could see, touch and hear, the rest were imaginary.

However times changed and I, being part of the nineties, embraced this change like no ones business. Social networking became second nature to me. It had its pitfalls but luckily I was an adult and thought myself capable of finding my way on this unfamiliar road. But soon the spell of status updates started fading and the urge to write a bit more began to gnaw. Technology proved to be a step ahead and gave me the platform of blogging. It satisfied my writing needs happily with the need of sharing and interacting with like-minded people.

Among the very first bloggers that I read and liked was an IIT pass out. The funky name of his blog and his killer sense of desi humour got me hooked. Slowly, interaction grew beyond commenting on each others posts. A sharp mind, a non-conformist attitude and a marathon runner was how I thought of him in those days.

Days passed and life got in the way. I as is my nature took too many breaks from blogging. The day job plus the children started keeping me busy and the pace of the desktop was overshadowed by the hand held phone. Inspite of all this there were a few blogs that I kept visiting and his was on top of that list. It was during one such visit that I came to know that my friend had found his true calling.

I love photographs. To me they express emotions, they make me go back and be a part of the cherished past. We have all been photographed many times in our lives. Mostly posed, and a few candid where our eyes are shut or one in the group is yawning. Never had I, so far, come across pictures that made me want to reach out to touch the beauty that was captured. Never before had I come across the marriage of precise technique and the warmth of emotions.  My jaws dropped as I got acquainted to my friend's new role, The Shaadigrapher of www.shaadigrapher.com .

Every time I look at one of  Amrit's wedding shots I realise that however fast new technology might grow it can never surpass the mind that uses it. The play of light and shadow, the beauty of colours, the shower of petals, the swirl of a gown or a tear moistened eye have to be felt and only then can it be captured. No wonder that in such a short spell of time Amrit and his team have carved a niche for themselves in our country and abroad. I take immense pride in showing off his website to my friends and family. Alas we are all long married, but what the heck, our kids are growing up and this team here is marathon material :)

So this goes out to all my friends who are getting married or know someone who is. If you want the best, you now have an address.

It takes courage to take the off beaten track, but to excel in it, well maybe it takes Amrit Vatsa!!

Power of love

There are seven stages of grief, the first being denial and the last being acceptance. How quickly one moves from the first to the last stage determines the person's will to fight and survive. Most get stuck at 'denial' - sad but true.

As part of a series on women with grit, I dedicate this piece to a lady who has not only come to terms with her personal challenge, but has gone a step beyond. She has opened a school for children with learning disabilities. With every step that she takes in this direction there are many like me who gain courage and inspiration. When most of us get dumbfounded by our personal demons, this lady goes ahead and brings hope to the life of others, similarly affected like her only son.

“If there is one thing I learned about friendship after my son was diagnosed as a special kid, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by their child having a learning disorder is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well,” says a mother of a 12 year old autistic child.

In your lifetime, you will probably know more people and families affected by some or the other disability. You can choose to be part of the solution by helping support a friend, family member or neighbour. Take the time to learn not just about the disability, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help by being a friend too.

When a child is first diagnosed as not socially ‘normal’, parents often scramble to find appropriate services, doctors, schools and therapists. What we don't always anticipate is that relationships with friends, family and neighbours often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.

So what happens when you find out that your friend, family member or neighbour has a child who has been diagnosed with a learning disability? How can you help your friend? How can you help their child?  There are many ways you can assist, from talking to offering a play date.

Be there; spare a few hours every week to reach out to families who are facing this challenge. It sounds easy enough, but parents of such children need someone to listen and ask how they are doing. As a friend, you may not understand all the jargon, but you can lend an ear and also learn in the process. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her bubble and combat the isolation. If not a friend, you can also contribute your time to non-profit schools and organisations that are catering to these children. The schools need more than trained staff, they need people to paint their benches and mow the lawn. These schools are doing a great job and you can be a part of it by just being open to the idea.

Bring forth a smile, have a play date. Play dates with special children might not be like a typical play date. Even if the play date is a little out of the ordinary, it will offer the kids an opportunity to learn typical social behaviours/skills from other children. For the typical kids, the play date may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families. As neighbours to affected families go a little beyond sharing a cup of sugar. Invite them over with their child and be open and accepting of the family and the related issues.

Offer respite, it is the best help you can give. Whether the child is a toddler, adolescent or adult, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion. However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with special needs is a great gift. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favour, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

The gift of money is as important as the gift of time. Not all afflicted families can afford the best schools and the best teaching techniques. Does that mean that they have to forgo the latest tools available to help their child? No, they won’t have to, if you step in. As a non-profit organisation, many of the schools for children with special needs rely on the support of community volunteer to help accomplish their goals. If you get in touch with the schools near your community, you will be aware of the ways you can help fund a child or a tool, or even help in raising funds for the school. Donations need not always mean truckloads of money, your change that adds to the weight of your wallet can also go a long way in bringing simple joys to the children whose parents are finding it tough.  There are various opportunities to offer your aid, you just need to be aware and willing.

Joy is a simple thing. The quantity you spread is almost always proportional to the quantity you feel. Light up a smile today, extend your hand, embrace joy.

Mom's the word

At the age of 35, how many of you would like to start school all over again from kindergarten? Not many, I presume. There is so much to do at that age. There is a husband and a house to take care of, parties, night-outs, romantic holidays, shopping and of course the self-defining career. To start school again is not something that would feature on the list of priorities of a modern 35 year old woman.

But I know a lady who did this. As a mother of a five year old son, diagnosed with autism, she decided to join school again. No school was willing to admit the boy. "There are schools for children with special needs, please take him there," they said. The special schools were quite a dampener. They did nothing more than babysit the child. This was unacceptable to the mother, who was neither in denial of her situation, nor willing to give up on her son. One reputed school following the international curriculum accepted the kid on the condition that the mother was willing to take all the classes with him. And so she did. giving up on her career, her personal joys, her 'me-time' she started school again with her son.

Autism is viewed as a tragedy. As a disorder that robs children of their lives and parents of their children. It took a lot of courage and tenacity for her to grapple with her son's development, autistic diagnosis and finding the right help.School in the morning, followed by some recreational activity and then therapy in the evening. Life revolved around this routine. She must have missed movies, she must have had to forgo reading the latest bestseller, she would not have had time for beauty sessions and dress trials. The things that we take for granted had stopped for her. But she had the joy of being useful to her son, of being able to help create a future for him. To start him off on a path that would eventually make him self-reliant in her absence. I think she saw that as a better trade-off.

"A happy and expressive child, becomes visibly confused and uncomfortable, while therapists curiously look on and continue prodding him," she wrote in her diary, during the early years of therapy. I can only imagine the frustration and stress of wanting to help her child while protecting him and letting him be a kid. She continuously felt torn between listening to her maternal instincts of wanting a happy, relaxed childhood for her son and listening to the professionals who advocate for stringent treatments. She must have felt  helpless not knowing what her son needs and wants; never truly knowing what he is thinking. While he made great progress some days, other days, it would have felt like taking several steps back. The school was always encouraging, she said, the therapists rarely so.

When the focus of a woman shifts from the husband to the child, it takes effort from the husband to keep the marriage alive. In this case, the focus was centred on the little boy, everything else seemed hazy. The relationship between the couple suffered and grew distant. A lot of things had to be forgone, like moving to a new city for a better job, social interactions were not easy, couple-time was less as the mind was occupied and the body, tired. The result was a woman who did not want to see this gap and a man who delved deeper into his work. As parents, however, they continued to be the band on which the little boy could always hop and play.

She was jealous of the little worries that the other mothers at school had.  She, at times, resented other mothers who eased through decisions for their children and worried over whether the birthday gifts would be liked by the child, or whether it’s time to move out of the crib and into a big-boy bed. She did not have the luxury of such indulgences. When she was done with the day's study with her son, she worried about supplements and approaches to try and encourage him to eat food. She lay in bed and wondered how her son would ever be okay in the world, how she could help him love who he is and have his needs met. She could never be easy. She could never be still. Always, she was running, moving, searching, finding. Always, she was fighting against the unbearable default of failing her son.

Years passed, some were filled with angst, but mostly they were years of learning and being happy in small joys. Last year she graduated with her son from school. As they shared the stage with their degrees, a woman of 53 and a boy of 23, the entire crowd erupted in applause, and why not! This was a journey that tells the story of an exuberant boy, who loves art, reads music, sings “Bohemian Rhapsody” in its entirety, makes videos on his computer, hugs and cuddles his parents, and is much more than his diagnosis; and it is also the story of a mother who believed that she could help her son.

As we celebrate Durga Puja in all its fervour and gaiety, and especially today, Maha Shashti, which is a day that is dedicated to the well being of the children, I dedicate this post to the mothers of children with special needs. The power, the energy, the fighting spirit is not always found in myths and legends. They are, in fact, a depiction of mothers like these who never say never and strive continuously to make life better for their children. "There is no tragedy if you don't choose to see one..", she says, and I believe.

Faith holds

There was a rickety, wooden chair in my house. As a child I sat on it while my mother plaited my hair each day before school. It was a ritual. Unruly tangles giving in to the firm strokes. There was a wince now and then followed by a tap on the head with the back of the comb. The result was two neat plaits, ready just in time for school. I did not have a mental alarm those days, maybe my mother did. What I had was faith that I would be ready in time for the bus. I sat without a worry in my head on that chair each morning.

Many summers passed and I got married. Not to a boy I had known since high school, or a guy I met at a pub, Nor a colleague, neither a client. I married a stranger. No courtship apart from a few formally arranged dinners with older chaperones. Suitable age, suitable boy, a good education and a steady job were benchmarks on which I put my faith. To face the seasons together, come what may, was the faith and it is running it's course.

Kids came and so did worries and mental alarms. Faith might have faltered in the small battles, but we keep moving forward each day because we trust, because we have faith.

It is festival time again. The time to celebrate our faith with family and friends.  To spread cheer through new clothes, new shoes, chants and hymns, frankincense and sweets, good food and fresh garlands. To hold a promise, to keep faith that this year too shall bring us joy and hold us together like all the years that have gone by.

The idol, though beautiful, is but an excuse, a face, to all that is good in the human spirit. More than the idol, I put my faith in the potter's loving hand. Faith that generations will continue to create this beautiful symbol of goodness on earth.

If God creates man, some men do return the favour with love

Something fishy

Soumya and Max

For the past few days my son comes home with his uniform soiled. He stays silent on asking. Even when his sister jeers, "Did you piss your pants?", he stays quiet. Very unlike him, to stay quiet, that is. I crib about having to wash his uniform on a daily basis. He says, "Mom, give it to me, I will wash when I take my shower." Not that he never offers to help around the house, but this is a bit over the top, even for him.

My children commute to school in the school bus. The bus does not pick them up from the school gate though. The kids have to walk a distance and wait for the bus. It is not an uncommon practice, the roads here are fairly empty and the children are not tiny anymore, however, this is the first thing that creeps up my mind whenever I worry about them being late from school or for that matter, soiled uniforms.

"What does he do  after school? Does he not wait for the bus with you?", I asked my daughter. "No, he has his own group of friends and they are on their own.", she answers with a shrug. I tell her to keep an eye on him, she shrugs again. I go to his room and see that he is cleaning an old Horlicks jar. I ask,"What happens to your pants everyday? Do you play rough, there is so much mud on it, where does it come from?" He makes the face that is known to melt my heart, the face that my daughter hates and my husband perceives as 'trying to get his way around with mamma look'. He puts aside the jar, takes my hand and makes me sit on his bed.

"There is a wadi (wadi is the Arabic for a dry river bed that fills up during flash floods. This term is also commonly used for murky water ponds in low lying areas) near the place where we wait for the bus. One day when I and my friends were playing cricket there, the ball fell in it and while we were taking the ball out I noticed that it is full of fishes. Mamma the wadi has so many fish in it." His eyes dance with glee as he narrates this tale. I can imagine the dull, grey fishes that he would have seen there, but to a person without any knowledge of murky pond habitation, he could well be spinning a tale of rainbow hued fishes with golden spurs. "Have you been getting into that wadi to look at fish?", I asked. "Even better mom, I go everyday to that wadi to catch a fish. I am this close to catching one.", pointing at the jar drying on his window seat he adds, "I am going to prepare a home for the fish I catch, I have also decided on a name, I will call him Lucky."

There was no point in talking about the pitfalls of a wadi to him, that day. No point also in talking about the germs and the diseases he could catch from that place. He was in love with a fish in a pond and you cannot show logic to love. As a mother I could not stop myself from saying,"Watch your step and make sure you are not alone." He nods and I go out of his room, and his world of fishes and ponds.

The following day he is successful and as I open the door to the kids from school, I see him in his dirty uniform, holding a poly-bag filled with water in his hand. He raises it jubilantly on seeing me. Toshali just says "Eeeeow stay away from me," and runs inside. He chases her up the steps and both of them in turn are chased by Max. Lucky is the sole survivor of the three that he caught. Talks of setting him free are not taken well and the response usually is,"He likes me mom, that's why he swam to me, cant you see he is lucky and so am I. We found each other." I smile, Toshali says,"Ohh pleeease...." and S! He went out to the pet-shop and bought fish-food. The plan is to model a tiny fish tank and add a few more friends.

The three tiny fish that were caught and brought home a few days back

 

Balls and more...

The summer holidays are at their fag end. I am looking forward to the schools starting. It has been a long two months of sweltering heat, a rowdy boy, a passive-aggressive girl and almost no 'me-time'. 

I am sharing a scene that needed to be captured. Yesterday morning after breakfast, when the kids were being assigned their chores for the day and Max was waiting eagerly for his set of instructions, there broke out a fight between my kids. They do not need an excuse. A look from my son, can cause a wave of emotions in my daughter, all negative, mind you. The look is then retaliated by words, which are seen as blows and felt by my son with almost Tsunami like strength. There is now a motivation and a license to hit, he feels, and before I can say "S-T-O-P" a full blown battle is on. These battles have found a great cheerleader in Max now. Nothing out of the ordinary, what I so far described. But then it happened.. amidst the blows, Bond (now nine, to be ten this October) tells Toshali, "I will kick you where it hurts real bad!" ...

T: "And where do you think that is? Huh? Where?"
Bond: "Your balls, of course!"
T looks at him, looks at me and says: "You should talk to him, he doesn't know anything, he is so dumb, I just don't believe it!"
Me: "Mind your language when you talk to your sister. Also for your knowledge, girls don't have "balls" though that is not the correct word and should not be used."
Bond (incredulously): "What are you saying? Everybody has balls. Me, you, Baba, Didi, even Max. The most important part of the body is the balls, it is more important than the brain or the heart. Everybody has it."
T: "I am out of this place, and Ma dont laugh, it is not at all funny."

I don't know what came over me, but I could not stop myself from laughing, I knew that I had to explain to Bond the facts of life, and also tell him that saying the B-word out like that is not allowed. But for the moment all I could do was roll on the floor holding my tummy. Toshali was livid and Bond thought I was in some kind of pain, because he could not comprehend that what he had said in such earnest was remotely funny.

I gathered my wits and made him sit next to me.

Me (Starting again): "Girls dont have testicles, that is the word to be used, if you want to refer to balls."
Bond: "Of course they do, everybody has them, Max just has one, I even know what the Vet said. She said she will operate and bring out the other one."
Me: "Max is a male, so his organs are like yours. T is a female and her body parts are different."
Bond: " She has it Ma, just doesn't know where it is. She is dumb."
Me: "I am not dumb, if I had them, I would know exactly where they were in my body, but, just like I said before, females don't have them. We have something similar called ovaries and they are inside our bodies."
Bond: " You are just giving fancy names that I cannot pronounce. It is all the same. Didi's are inside? Ma, you know what, that is why she is so stupid, her balls are inside." Take her to a doctor, they need to bring it out."

I knew by then that Bond understood that he was wrong about the human anatomy, but he was enjoying irritating his sister and so continued. It might seem stretched out here, but all of this happened within a framework of 15 minutes or so. The fight continued and then lost steam and topics were changed and the day flowed on.

Maybe I should have taped this, to be used on a later date when either of them is being gutless about life issues. By then they would also know that 'Balls' has a literary meaning too. And in the literary sense women have as many balls as the men and yes, they are not covered up either.

T and Bond as in 2006