Tag: cancer

An Update…

~ binusivan ~ 2 Comments
Sakshi Verkot – Forever 16

It has been more than three months since I last posted anything out here. A lot has happened since that post. I have lived a lifetime and died a million deaths.

Over the last few months, I had shared glimpses of my daughter’s and our journey as she fought a rare and aggressive sarcoma called Desmoplastic Small Round Cell Tumour (DSRCT). The prognosis for this type of cancer is rather dismal yet buoyed by her initial response to treatment and her gung-ho, sassy spirit, we had believed that she, and we, could beat it.

We were wrong. The cancer spread to her cerebro spinal fluid (a cancer that spreads to the CSF is called leptomeningial disease and is basically untreatable.) The damage it wreaks on a human being is cruel, and in the last three months of her life, my child lost her ability to walk independently, lost 90+% of her vision and in the last two weeks, most of her hearing.

On 6th July this year, at 1am, my beautiful girl slipped into a deep coma after a cardiac arrest, and at 3.36pm passed away. Random date. Random time. Random fate. The first Code Blue on the Paediatric-Oncology Ward at Mediclinic City Hospital.

None of what happened to her makes sense and we are working on trying to put our lives back together after the very centre and soul and glue that held it together was yanked away so cruelly. She loved life and had larger than life plans, and we are heartbroken and enraged that she was not given a chance to live and try to accomplish those. At the same time, we are aware that had she lived even a few days longer, she would have lost her ability to talk and eat and we are glad that she was spared that torture and humiliation at the least.

Cancer is a fucking bitch, and when it happens to children, nothing makes sense anymore.

I am unsure how the writing will proceed. I know I had started a series on my Himalayan road trip – the drafts for the next few posts lie in a laptop folder, but working on it right now is not a possibility. All I want to do is talk and write about my glorious girl. Keep her alive at some level.

I also want to share her story. We had resisted sharing her story on any social platform, for the last couple of years, because we had hoped and planned to do it after she beat the cancer. That is how she had wanted it – not to be seen as a victim, but a victor. While she did lose the battle to cancer, anyone who knows her would tell you that till the very end, she fought like a warrior, like one of those Marvel superheroes that she loved, and in a strange way she did win.

Striking her favourite pose at her 16th birthday party

She won everyone’s hearts. The doctors, nurses, even the catering and housekeeping staff at the hospital, other patients and their parents on the paediatric-onco ward, her school mates and family and friends – every person she encountered walked away feeling more positive and stronger for having met her.

The people who were fortunate enough to know her and her story have walked away inspired by her kindness, courage, and attitude to life. She inspires my husband and me to carry on and to do things that would keep her legacy and memory alive – be it creating more awareness about childhood cancers, sarcoma, or DSRCT in particular, or creating an endowment fund or plan in her name.

I will be using this platform, besides FB and Insta, to share her story with a clear intent to raise awareness and hopefully, inspire others to stay strong. However, the writing will not commence right away – maybe a month or two down the line. I am focusing on healing and getting some of the above mentioned projects started.

Thank you for patiently reading till the end. If there is any way you can help me in sharing Sakshi’s story, and help create awareness, please do let me know.

Today, She Gets to Play

~ binusivan ~ 2 Comments

Photo by Anthony Cantin on Unsplash
Romance has begun anew.
Lying gentle and bright
on a bed of tender laps
moving in and out
of the Arabian bay.
Madness bubbles in minds
laughter escapes lips
milk spilled on waves
as night melts into day,
The full moon has her way.
The sea smiles.
Draped in a blanket of light,
Flung, not wrapped tight,
her toes tease the shore.
Today, is her favourite day.
Today, she gets to play
With the gentle light
she secretly loves.
Even as the land tugs and pulls,
silent where he lays.

A little poem to ease back into the newsletter routine. The last few weeks were tougher and busier than anticipated, but the good news is that the kiddo is recovering well from her surgery.

This disease and its treatment are both designed in the very bowels of hell, and we (and many others) walk through it on a daily basis. The simple act of facing another day with hope, and not giving in to despair can demand every ounce of energy one has. The fight against the rage and envy that one invariably feels when we wonder, ‘Why me?’ ‘Why my kid?’ or as we watch everyone else live their cancer free lives, corrodes my insides.

At the same time, it has taught me patience and how to live in the moment. Of course, the journey is not yet complete – we have a few more months of radiation and support chemo to get through. Right now, we are in the testing, scanning and planning stage and by God! it is the most frustrating stage as we wait for everything to line up before treatment starts. But at the end of it all we have the carrot of being cancer free dangling at the end of the treatment stick.

However, we all hope to have some semblance of a routine back in our lives once this phase of the treatment commences, sometime next week.

In the meantime, on The Wheel of Time front, I have reached Book No. 11. It was tough going at times because I was irritated as hell by how the female characters were fleshed out – almost all of them were irritatingly stubborn and arrogant. And not one single woman simply crossed her arms. She would cross her arms under her bosom. Every. Single. Time. Despite that I could not set the books aside because the story gallops ahead. Am yet to watch the show though… maybe after I read all the books.

Time To Say Thank You!

~ binusivan ~ 1 Comment

A few months ago, when the issue of OROP (One Rank One Pension) for the Indian soldiers, was still headline-worthy, a leading news channel hosted a discussion with a panel of retired defence personnel and a few family members of military martyrs. The focus was not just on the problems relating to OROP but also about what exactly a soldier feels in the face of such political and bureaucratic manoeuvring. A retired air force man spoke about izzat (honour) and respect.

A word like honour can sound archaic – something more befitting a feudal lifestyle… though in India, we never wander too far from our medieval roots. However, this retired pilot was not talking about honour the way, say, a khap panchayat would interpret it. No. He was talking about something more basic. Something, neither he nor any other soldier, retired or otherwise, should have to beg, ask, protest or fast for. This is something that should have been a given.

He was asking for acknowledgement. Acknowledgement for what they have done… for us. The sacrifices they have made. The price they have paid. For being the kind of men and women who realise that being a soldier entails a very real danger of being torn apart by bullets or bombs, and yet sign up for the job.

Acknowledgement not just from their fellow soldiers and family members but from the government and the people of the nation. And it is not just our soldiers. It is our cops. Our teachers. Our municipality workers. It is our parents. It is our watchman.

The world has always been divided along class and linguistic lines, but a lack of time and even worse, lack of empathy have exacerbated the problem. And, while it’s true that not all of us have the wherewithal to change the world we live in, we can change one small thing by acknowledging the fellow human beings who pepper our lives. There is a story behind every face and a hero, a mentor, and a guide hiding in the most unassuming of people.

Listening to that retired soldier speak, I wondered how many times I have bothered to acknowledge, honour and celebrate the people who have impacted me. The answer did not reflect well on me. So I decided to do something about it. Being a writer, pretty much all my ‘doing’ is done here – so here is my rather sorry attempt at acknowledging three of the people who made the greatest impact on my life.

My Mother – The Survivor

I never had to look outside of my home for positive role models. They had dinner with me every single day of my childhood. My mom got married young. When she was 17. She wanted to study and become a doctor. Her dad, my grandfather, however, felt that it was important that she get married before she became an old maiden. She rebelled by refusing to write her 12th school-leaving exams. She rebelliously declared, “If you are not going to let me study then what is the point of my writing any exam!”

She was 18 when she had me. When I was in my grade 10, my mother decided that she was going to get her college degree before her daughter did. We were in Chennai (then Madras) at that point of time. She appeared for an examination that was the equivalent of her Class 12 exams and passed and went on to graduate in B.A. Literature from Madras University… two years before I completed my degree in commerce. She then went on to do a Diploma in Computers at Loyola College, Chennai. In her 30s, she started working. And she worked till she was nearly 55. She worked right through her cancer and resultant surgery, chemo and radiation. It wasn’t an easy journey and there was resistance from many quarters. However, she hung in there.

If today, I have the luxury of being an independent and fiery thinker, it is because of what she taught me.

My Father – The Soldier

Growing up in Chennai, many often mistook my dad for a cop, because of his moustache and deep voice. Then they would get to know him better, recognize what a softie he really is, and start laughing with him about the misunderstanding. In today’s world by all standards my father is an ordinary man. His identity today is of a retired airforce man in his 70’s who still continues to live life independently with my mom.

However, scratch the surface and ask him about his youth and the stories begin to flow. Like all soldiers, Daddy loves to tell the stories from ‘his war’. But only to those who ask and show interest. Even then, he will not tell the stories that really matter. The stories behind why he a JWO (which means he was the ground support staff and not a pilot) was awarded the Vayu Sena Medal (a medal usually reserved for the airborne) for gallantry during the 1971 war. His act of bravery involved stepping out into the airfield when it was being bombarded by enemy aircraft and helping Indian fighter planes land and taxi in. He encouraged others to ignore the danger to their lives and do the same too. The medal is discreetly displayed on a bookshelf at home. For many years, he was happy to keep it locked in a cupboard until my brother and I took it out. The photograph of him receiving the award is proudly displayed in my house.

Sometimes when I see him interact with a shopkeeper, or a waiter, or his own grandchild, I wonder if they know that they are talking to a man who displayed exemplary courage and devotion to duty in the face of extreme danger.

My Teacher – The Task Master

I was in Class 5 and even then English was my favourite subject and Christella Ma’am, my class teacher was my English teacher. Halfway through the year we had, each, to work on a project. I had to do something related to verbs or tenses… I don’t remember. What I do remember is breezing through my work and submitting it the next day. I knew… just knew that mine was the best project work in class. I could see the others struggle.
Christella Ma’am took in all our submissions.

The next day we were told our marks. Another kid in class had got the highest marks. I don’t remember if I came in second or third or fifth. I remember I didn’t come in first. To say I was taken aback would be an understatement. So immense was my feeling of being unjustly treated that I marched up to Ma’am and asked her, ‘Why!? Why am I not the top scorer?’ Ma’am looked at me and said, “Your work may have been the best in the class, but it was not your best.”

In that moment, she taught me one of the biggest lessons of my life. Anything worth doing is worth doing, not just well, but the best that you can make it.

It took me many more years and a tryst with a job in a stock broker’s office (for all of a week) before I realised that I wanted to write. But the seeds were sown by Christella Ma’am.

 

The Municipality Worker – This man did not impact my life choices, but he did teach me a couple of things about attitude.

There is this guy I met while visiting my brother-in-law’s family in Nerul, Navi Mumbai. He is, what we all collectively call, the kacharawala. An ironic tag for someone who clears the kachara (garbage) created by us. I don’t know his name. But of all the people I met during this last holiday, he had the greatest impact on me. Why? Because of his attitude. He always greeted us with this big, friendly smile and said ‘Hello didi!’ He didn’t grumble. He didn’t whine. He didn’t look like he hated what he did. And if there is a job that is easy to hate, it is his! Maybe he did hate what he did. Maybe he never thinks about it. Or maybe he is the kind of human being who does whatever he has to do with dignity… a throwback to the kind of human being Gandhiji extolled all of us to be.

On India’s Independence Day (August 15), he greeted us with a ‘Hello didi! Aap clubhouse nahi gaye? Janda lehra rahein hai aaj. Achcha hai.” [Translation – Did you not go to the clubhouse today? They are hoisting the flag. It is good.]

Above all, I remember the vibe he spread. He was a happy man and it made me happy to just say ‘hello’ back to him.

There you go – that is my list for now. Do write and tell me about the people who have impacted you. If nothing else, definitely spare them a thought and a prayer.

 

 

 

Negotiations With God

~ binusivan ~ 4 Comments

This was written some years ago – when I was neck deep in fear. Am finally ready to share it. Part of my resolve to grow into a writer who will not hold back her truth – be it embarrassing or painful.

2009

It is the call that most women dread. The one from their doctor. The one where a clinical yet sincere voice tells you, “We have found a lump.” The regret in the voice is genuine and sincere. But the doctor had just got started. “Actually three. In your left breast. And there are six nodules on your thyroid glands.”

As you see the matrix of life rotating clearly around you for a second you’d happily swap all the sincerity spilling over the mobile, for a guffaw and a gotcha! from the other end. No such luck! This is not a prank call. It is real. And you feel yourself grow cold.

It is amazing how calm one can be when one is told that you could be staring down the barrel of a gun that may be loaded with those dreaded cancer cells.

I was at work when I got the call.

I remember calmly agreeing with the doctor that most probably they are just benign growths.

I had three lumps in my left breast and a few nodules on my thyroid. What are the chances that all of them were benign? She did not say it, but we both knew – minimal. You have to be bloody lucky.

I remember standing up and saying to nobody in particular that I needed to stretch my legs. I remember walking to the corridor that ran outside my office and resting my head against the glass panels, near the elevators, that looked out at the outside world. No one else’s world seemed to have come to a crashing halt. People were busy rushing to their meetings, talking on their phones. Maybe some of them carried extra cells, and did not even know it!

The glass panel felt cool against my forehead. But I was burning with a strange fever and fervor now.

I have never believed that very deeply in detailed prayers and rituals. My prayers have always been simple – ‘Thank you.” That’s it. I have never wanted much in or from life.

Yet as I stood there resting my head against the glass, trying to absorb the cool of the glass into my being, I started negotiating with God. She is only 4. Keep me alive till she turns 18. No… 18 is not enough. I have to teach her about life, self-worth, love, strength and belief in oneself. I need time till she is at least 25. Keep me alive long enough to teach her all that is important. Keep me alive till I have hugged her and loved her enough number of times that she will have the memory of it seared into her soul. Keep me alive; take my breasts, lymph nodes, glands and whatever. I don’t mind. Just keep me alive till she is old enough to manage life without me.

That was five years ago.

The three lumps and the six nodules?

All of them were benign! I was the bloody lucky one.

I cleaned up my act for a bit. Ate healthy and exercised a lot more. I quit a stressful job and took on a less stressful one.

Two of those lumps disappeared. So did five of those nodules. No treatment. No surgery. Nothing!

2013

Yesterday I got another call.

The remaining lump in my left breast and the thyroid nodule have grown. A sudden unexplained leap in growth. More tests. More procedures. More negotiations with you-know-who.

April 30, 2016

 

20160418_095454
A simple reminder from my daughter.

 

 

It has been two years since the second scare and I turned out to be bloody lucky the second time round too. This time round I have heeded the lessons better. I have worked towards clearing the stables – emotional, physical and spiritual.

There are some of us who grow without too much of a struggle. Then there are people like me who have to be dragged through life’s classrooms to understand the lessons on offer. It is amazing how despite being aware of time being in short supply we squander it with such impudence. We should know better! And yet… we let it slip through our hands. Oh sure, we are busy. We all are busy. But how many of us are busy doing what we love… at least for a few hours in a week?

2016 has somehow been the year when I grew up. It has been a year of reckoning. Not because I hit a milestone birthday – that was three years ago. Somehow this has been the year when I have become more aware of the unrelenting passage of time. This has been the year when I stopped making excuses for not chasing my most closely cherished dreams.

This has involved going for my walks regularly, going on treks (and scaling some inner walls and mountains), making plans for my eventual move to the Himalayan foothills (even if it involves dragging a reluctant husband and daughter uphill), working (and I mean working, not dabbling) on my novel, and speaking my truth and learning to say ‘Yes’ to all the things that I am dying to do but, which scare the living daylights out of me, and finally, saying ‘No’ a bit more often to things that don’t reflect me.

Maybe it will just save me from further negotiations with God.

BRAVE

~ binusivan ~ 3 Comments

‘Man proposes and God disposes.’ I did not realize that maxim applied to women too! I had great plans of blogging twice a week at the least! I had plans to burn the dance floor on the 31st. And then on 30th of December a regular ophthalmologist appointment turned our plans upside down. December 31st saw us in the surgeon’s clinic getting familiar with terms we had not heard of before and we brought in 2013 in a hospital ward. 

Funnily enough no one told us that we are meant to be frightened. Maybe we did not have time to really let the details sink in and realize how close a brush with blindness we had had. It also helped that lifelong friends turned up at the hospital and took turns to give us company, which invariably meant that we all cracked up laughing over the most inane of things. At one point I was worried that the hospital staff may come in to our room to ask us to keep it down. The main concerns were ‘Do you want to eat in the hospital canteen or should we order food in from Blue City?’ Indians are foodies to the core. Apocalypse may be around the corner but we are going to face it with a full stomach. 

But there were moments when my equanimity was shot. Watching my little one tip-toe in so as not to disturb her father broke my heart. This is the girl who walks in to a room bringing the roof down either with her loud giggles, songs or howls. She has never walked quietly into a room. But as the good doctor told us after the surgery ‘don’t look upon all this and think you have had a lousy start to the year. Instead think about it in terms of how lucky you are that you found out about the problem in time to be able to save your vision.’ Perspective. But that advice has stood us in good stead. Someone I know called us brave. Little does she know. Ours is the bravery of the ignorant. If we had really had the time to sit down and consider our options and the things that could go wrong, we, at least I, may have keeled over with fright. But as is ‘all izzzz well’.

Many years ago when my mother was diagnosed with breast cancer my father, mother, brother and I faced it as though she were diagnosed with a severe flu. The whole attitude was one of ‘we will do what is necessary – surgery, chemo, radiation – and she will be alright.’ The next six to eight months flew by in a blur of not-knowing, knowing, pain, hair loss, learning, maturing and treatment. But we had an absolute rock solid surety within ourselves that we are going to beat this and we did. And when we did, when the doctors declared her cancer free, none of us were surprised. You see, we already knew that. 

But the sheer shock and trauma of what we underwent hit us a few years later, while watching a movie in which they depicted the whole ‘cancer thing’ with a lot of accompanying drama. Watching the characters dealing with the heart numbing news, the fear, the pain of watching your loved one suffer and bear the treatment, I wondered ‘how did we do it? how come we never cried or worried? Or did we? Has my mind mercifully blocked out all those memories?” 

I am still not sure of the answers to the above questions. What I do remember is that my mother refused to be beaten. She refused to quit her job and continued to work (lesser hours) and when she lost her hair, she wore a wig in a style that she had always wanted (but of course!). She was brave. That is what I thought. The other day I was talking to her about how crazy those days were and how brave she was. She looked at me and smiled and said, “I don’t know if I was brave. I just did not think about it. I really don’t think I knew enough to be frightened. God has always taken care of me and I just did not doubt for a minute that he will do the same thing this time too.” I still think she is brave.