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Friday, 1 June 2018

My first chapter with Cholangiocarcinoma- Life, death and faith

There are times when we cannot unravel many truths of life.  Fear and anxiety are our expressions. Courage, patience, resilience go far away when a disease suddenly strikes us or our very dear ones. The initial reaction to a terminal illness is a shattering heart, collapsed strength and a sudden expression of denial. We are humans, no technology still boasts to regulate our emotions with a button, emotions could have been graded from 1-6 and we could have closed our minds to zero.   

The trauma of seeing one’s loved person going through all the medical complexities is in its own way mortifying. It could bring one closer to a few philosophies about life, truth, and the inherent power within us.  The insight to handle things in a very different way which could have been unimaginable otherwise.

Dad was feeling weak past few weeks. A normal cough and cold, few visits to the local medical store and some capsules eased his general feeling of uneasiness. A normal healthy man who had never been through much medication, he had never even fallen ill for more than a week.
Managing everything on his own, he was all about living an independent life which involved a lot of hard work as he believed work keeps us going, it helps us to build our immune system and also keeps the faith alive. Work is worship.

3 weeks later he has an irritable condition of acute itching. Crèmes, lotions, oil, bathing twice a day, soft clothing, mild water compression, and light food …no, they did not help much. A local medical shop prescribed him some allergic tablets. For the day he was fine but allergies don’t stay more than a week. Dad was having insistent itching which never stopped.

Weeks later, hospital room, ward number, white sheets tucked tight, sanitized hands, potion bottles, a silly side table that had nothing but various sized needle packs, smell of hope or the fear of sorrow all compressed hard in that small room

The senior consultant hands us a big fat file, biting my lips I moved my eyes, the husband stood tall, holding my hands tight, …it was warm, strength meant a hug that time and a  word that he was all good..  But there was another chapter of my life which had begun ‘Terminal Cancer’ it was last stage.  

It was an aggressive cancer we had never heard about “Cholangiocarcinoma” which was also termed as Bile Duct Cancer. I had the reports with me, my hands were shaking, I felt breathless, and my  feet lost a ground as if they pleaded me to make them calm. The Gastroenterologist said “One of the most rarest cancer an unfortunately an aggressive one”
In summary, cholangiocarcinoma is a devastating cancer. Its incidence seems to be increasing around the world; it presents late in its course, is difficult to diagnose accurately and early, and most cases cannot be cured.

Life had come to a halt. Dad lay awake like a little child in room No-102. He is with me. He has no severe symptoms. But I never saw him so pale, so dim. My Dad who had the invincible spirit to strike back lay there on the bed, his eyes half open. We are all fighters. 

The reports were all piled up in one file.Typed words showed the the word “Malignant” Carcinoma …few of those words have ghastly effect.

A thousand storms and a new awareness of understanding what Cholangiocarcinoma is?

We are unaware of ailments, the reasons behind them, the different stages, the methodologies of diagnosing, and the treatment methods until we be a part of it. And most important is the coping mechanism, the behavioral aspects.

The Senior Consultant had few words, a glance, comforting gesture and reality checklist “I am not God, it could be 3 months, it could be 6, it could be more or it could be less”

A new start, a new beginning. Setbacks take us a little closer to hopelessness,  trial, pain but yes having said that life had some countable days with our beloved also opens a big door in a different way.
The door which stood behind, a sudden flash back of all the moments lived, of all the times which we  had slipped, the dispirited stages, the brief time which we harboured in our minds but never could cling to, the unknown aspirations, the wandering goals, the unspoken words, the dreams, the hopes, the willingness to rewind the times, all came swirling around me.  Did I ever say “I love you” seeing into his eyes.
In these times of hopelessness, pain, struggle, heartache, there was a new me. Somewhere there was a mind which unconsciously broke the patterns of what I was.  My attitude towards life started changing.
It was new journey of hope against hope,
  • Perseverance
  • A new vision
  • Commitment towards a deeper goal

And taking away those little gray spots in life’s book, holding on to the sunrise, lighting many candles and coming out of the comfort zone. The stark reality of understanding that as long we breathe, we live, our aspirations live, our willingness to survive leads us, our journey holds us, we can work upon many path, we can break rules to smile, we can make a deal with life, we can count our blessings, we can walk towards the sunrise, we can enjoy the sunset, we can live with our defeats, we can enjoy our victories, flawed, perfect, cynical, saintly we are better as humans.

So here begins my first chapter of a different trial of living with my Dad’s terminal illness, Cholangicarcinoma, a slow approaching devastating truth but on the other hand it is a new beginning for a better understanding about life, coping up with stress, fear of death and being injected with a new spirit of fighting back, enjoying every moment and living to the fullest with Dad. 

"Increasing awareness of cholangiocarcinoma is the first step in helping to fund research to find a cure. Do what you can to help fight rare diseases. Too many families are like ours; wishing their sons and brothers and loved ones had the chance to live lives without this deadly disease."

1 comment:

  1. I am shocked to read this about Uncle. Wishing lots and lots of power to you.
    Difficult to believe it.


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