Living With Cancer-Personal stories-1

Sri. Ramendra Kumar, Celebrity Author, Bangalore

This series presents personal stories of persons living with a diagnosis of Cancer.

(Sincere thanks to Ramendra Kumar and Patients Engage for this story)

  1. Could you take us through the past few months which have been very  difficult for you?

As I reach out to the esteemed readers of Patients Engage let me share my status in the here & now.

I am a cancer warrior having battled 4 septic shocks, 4 major surgeries, 4 rounds of radiation, 8 chemo cycles (the 9th cycle will start on 28th September), 40 days in ICU and a weight loss of 17 kg.

And now to a bit of flashback. I was diagnosed with colon cancer stage 2 on 29th November, 2021. After the initial shock I raved and ranted. But then I looked at Madhavi, my wife and my kids,  Ankita and Aniket  and decided  I couldn’t  subject my family to the  trauma I was going through. After all I have always believed that family comes first.

As a writer, storyteller and inspirational speaker  my response had to be different.  I decided to wage a war against cancer with my mantra of fighting every tumour with humour. Ankita and I created a dance video which went viral. I participated in panel discussions, interviews,  posted poems   and filled social media with fun-filled messages including  takes on Amitabh Bachhan’s dialogues in Deewar and Silsila.

The response to my  optimism was humongous. Messages on WA, FB, Insta, all lauded  my fighting spirit.

The doctors were happy seeing my response and decided to go in for the daddy of all surgeries – colostomy – in which I would be de-colonised.

I was admitted on 16th March and the surgery was  performed the next day. It took eight hours but there were no major issues. I was released from the hospital in three days. Since the doctors felt I had  handled it like a champ they  decided to go in for  the Ileostomy closure on  6th April itself.

This was a much, much simpler operation but turned into a complete nightmare. The bowels didn’t work for the first 6 days and then there was a deluge which completely dehydrated me. The sodium levels increased alarmingly, and that led to disorientation. To add to that I was given Lorezipam, which is a common medication, but I reacted very badly to it and became extremely agitated. I had started pulling at my  clothes and the tubes connected to me, including the  IV canula resulting in blood all over the bed. 

Seeing my condition, the doctors  shifted me to the ICU. The situation  continued and my hands and legs were tied up.

On 16th April, the doctors found that my  stomach looked distended. They took   a CT scan to see why. They found there were  faecal matter floating all around the abdomen cavity.  There was a leak in the small intestine, near the site of the surgery.  The doctors   decided  to  go in for an emergency surgery.  This was the third surgery in the span of a month.

The surgery went off well and my family went home.

And what happened after that … I am repeating what Ankita told me, “At around 10pm, Aniket got a call that you needed blood transfusion. When we reached, the doctors took us to the discussion room and said they had been trying to stabilise you for the past 2 hours. You had gone into severe septic shock post the surgery. Your BP wasn’t rising above 60 despite being put on the maximum dose of 20 units each of two of the strongest BP meds.

One of the docs said, “There was very little chance (of you making it) but I won’t say there is no chance. The urine output is still high so the kidneys haven’t shut down yet. However,  the BP has to rise or there is a risk of organ failure.”

Hearing this mum broke down, the first time ever. “He can’t go like this,” she said and started crying. We had to comfort her saying, no there was a chance and we would do anything to get you out of it.

We were allowed inside the ICU…..I held your hands and  started talking to  you. It didn’t make any sense; it was too late for miracles. But in this madness, nothing made sense.

The scene was straight out of a Bollywood masala movie – the protagonist  on the deathbed, his vitals going berserk, the others  reaching out to the almighty  and waiting for the miracle to happen, which on celluloid  always did. But this was not reel life, it was real life.

“Anki, it is too late for all this. He can’t even hear you,” Ani, the most pragmatic amongst us said.

“I don’t care,” I replied and still holding your limp palm in my hand, continued.

“Papa you’re our hero. You can fight this. You’ve fought through so much in life, this is nothing for you. You can do it ‘cos your mind is so strong. And its your mind over your body.  And you have to listen and fight with your mind.

You will fight this, Papa. A stupid insignificant bacteria can’t get the better of you. You are a fighter. The strongest person I know. The person I love the MOST in my life. We all love you and we are here for you, beside you, fighting alongside you. But YOU have to fight the hardest. You’ve overcome so much in life. You’ve fought the odds and always come out a winner. And you will do the same to this. You will fight and you will emerge a winner.

‘Kill them all and come back alone’.  Just like you always told me before my math  exam. And this can’t be worse than a math exam.

You’ve been so strong through this whole ordeal Papa, you will emerge  out of this too. We all believe in you. You have soooo much love in your life. Your family, friends, fans – people are in awe of you. You will continue to awe us with your sense of humour in adversity, will power and the ability to fight it all. We love you. I love you.”

We slowly started seeing the BP rise. With every little milestone in the BP rise we would cheer you. Soon Ani and Mummy also joined in, to lift up your spirits. For 40mins we spoke to you despite you being on ventilator and totally drugged out. We saw the BP climb to 124. It started hovering at 124-127 and that’s when the doctors asked us to step away.

Who says miracles don’t happen?

When everyone had given up any kind of hope, you  had responded, the only way you could, to your Princess!!

The surgery was successful and I was shifted to the isolation room within the ICU. Over the next three weeks I suffered from three more septic shocks. Finally, the fourth surgery was carried out on 7th of May – which too went off quite well.

Apparently, all through this period  I  was completely delusional. I got manic, suffered from paranoia and played the gaslighting victim card to perfection. My  ramblings were crazy, unconnected, scary and  morbid :

– Aniket attempting  suicide and  his eyes getting irreparably damaged because of his papa’s past sins, Madhavi  being  kidnapped and shot, Ankita being threatened with an acid attack, Ani accusing me  of destroying his  life –  detailing was accurate –only the premise was  ridiculous. The line between illusion and reality blurred completely even as my family  watched helplessly, my descent into near insanity.

 I  screamed, raved, ranted tried bullying and blackmailing the doctors and my three living angels to get me  to the ward. Naturally everyone  resisted because they  couldn’t take the humongous risk of taking me  to the ward and bringing me  back again to the ICU. This had happened three times already and another repeat could prove fatal.

Gradually my  condition stabilised, the parameters improved and I was shifted to the ward and finally discharged three weeks later on 30th May.

2. Are you now living with a colostomy bag? Would you like to share the experience?

The last two surgeries involved a long deep cut in the abdomen. It took a long time to heal. And during this period managing the colostomy or stoma bag became quite a nightmare as the base of the stoma bag would get soggy due to the discharge from the surgical site. Moreover, there was a lot of pain. During the first two weeks there were frequent leakages – one evening within a span of an hour there were three. Later, even after I was shifted home,  the leakages continued mainly due to the surgical cut. Changing the stoma bag needed professional expertise and we had to engage paramedical staff. Due to the traffic and the distances in Bangalore, the staff  took  time and I was stuck with the muck.  Even emptying the stoma bag was not easy. I was very  weak and Madhavi had to help me out.  During the initial days it was very upsetting, having the bag attached to me was also mentally  disturbing. Even now it is like a dominating boss – a necessary evil. I am trying to get used this new attachment, but it is not easy. It serves as a constant reminder about my helpless condition.  I have to empty it around 7 to 8 times during the day and a couple of times at night. Since I am very, very light sleeper I can feel when the bag is full and needs to be cleared. This is naturally a deterrent to proper sleep.

Except for going to the hospital and back I have not yet started travelling, even within the  city limits, which I hope to do in the near future. However, the real challenge will be travelling outstation.

What were the post sepsis issues?

I don’t think the after effects of sepsis can be isolated. During one of my regular visits to the hospital, the doctors told me that there was no precedence for what I had gone through so they didn’t have any data to fall back on. They have to tread carefully considering my individual requirments. Further effects may show up later at any stage.  Keeping my fingers crossed.

4. What has been your greatest support system during these critical times.

I think my greatest support system  has been  my family. While Ankita’s role I have already mentioned Madhavi and Aniket had  put their lives on hold. They were running from doctor to doctor,  looking for reports, trying to understand what the doctors were saying and insulating themselves from the   advice  from well meaning relatives.  Their lives had become a relentless syndrome of visits to the   hospital, meeting with the  doctors,  a few hours at home and back again. Aniket had practically stopped his office work and was 24 x 7 in and around his papa trying to make some sense out of the turbulence that was happening. Madhavi  too was forever on the edge dreading each moment.

But in all this chaos none of them pressed the panic button. They never  lost hope nor faith in the doctors. And whenever I had my brief trysts with consciousness they never, ever gave me a glimpse of the Hades to which I had travelled.

My foul weather friends also rallied around with messages and  calls. Prayers in different places of worship, invocations, columns in newspapers, posts in social media…. I was simply amazed at the love, affection, concern and blessings I was inundated with. I was compared to the protagonist of the movie ‘Anand’ and Ralf Nadal as he battled his abdominal injury. I was called an inspiration, a ray of sunshine and even a messiah!

5.What are the coping mechanisms you would suggest for people  battling the toughest of odds?

  • My advice to everyone would be  – don’t take yourself too seriously. Boil on the bum or your  bum on the boil – try to see the ridiculous in the sublime.

      I have two great philosophers to inspire me –    Gabbar Singh who said – “Jo dar gaya,         samjho mar gaya.  And Pushpa who declared   –   “Main Jhukega nahin!!”

  • Pursue a passion –music, painting, gardening, reading, cooking et al. This will keep your mind occupied in a productive activity and will not allow negative thoughts and anxieties to invade your space. For me writing, storytelling and public  speaking have been my passions. And within two weeks of my discharge from the hospital I had started following my Ikigai.
  • In the rodent race called life we often forget to build relationships.  Make relentless efforts to strengthen   bonds with family and  friends. You have heard of  Anytime Money or ATM card.  I have created a new card –  ATM – or Anytime Memory Card. What is the most precious gift  you can give your family and friends? No, it is not money or things which money can buy. It is a bundle of memories – each a gossamer fabric of fun and togetherness. And how is this fabric created – with two four letter words –  Love & Time.  So go ahead and create memories. These, like diamonds, are forever!
  • Live in the present moment and remember that cancer is just a word, it is not a sentence (pun intended).
  • Your most important goal should be to create an ecosystem of positivity. Your optimism will have a cascading effect. Those around you too will be caressed with hope and they too will respond in the same way.         

      Once you start creating an ecosystem of positivity the entire universe will come together offer you succour, solace and strength.

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