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HomeCancer Survivor StoriesNilakanta Siva (Transitional Cell Carcinoma): Keep Yourself Engaged

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Nilakanta Siva (Transitional Cell Carcinoma): Keep Yourself Engaged

The Transitional Cell Carcinoma diagnosis wasn’t a total surprise. No “why me syndrome. After all, I did have a twenty-year history of Tobacco abuse: smoking. True, I had quit thirty years earlier, but, believe me, cancer entertained no mercy petitions. My seventieth birthday gift was me surrendering several organs to the biowaste bin.

Transitional Cell Carcinoma Diagnosis

It all started with an episode of painless gross hematuria – plenty of blood in the urine. The diagnosis was based on an Ultrasound scan of the kidney, ureter and bladder, followed by a cystoscopy – an intervention with a camera-based cutting edge to look into the bladder and scrape a sample from suspicious portions for histopathology. The Biopsy confirmed that what was seen on the scans as a mass near the mouth of the bladder was indeed a TCC CIS, i.e., a transitional cell carcinoma in situ.

Transitional Cell Carcinoma Treatment

We had the choice of preserving the bladder by resorting to intravesical Immunotherapy via BCG washes of the bladder, and if it does not work, we could then consider Surgery. However, since the chance of success was very meagre, we opted for immediate surgery: radical cystectomy with ileal conduit diversion. This involved removing the entire bladder, prostate and the surrounding lymph nodes, clipping off a bit off the terminal end of the ileum, welding it to the ureter and pulling it a wee bit out from the middle of the abdomen by creating an Ostomy to drain the urine out into a bag to be stuck to the stomach.

The most important aspect of rapid recovery and rehab is keeping yourself mentally and physically engaged in activities alien to your pre-cancer life. This is true for the patient and his at-home caregiver: wife or daughter-in-law. We started and ran a boutique of women’s apparel and artificial jewellery and started writing stories about life after cancer.

My Bio Sketch

One of the most challenging things is having to write five or six lines about yourself twenty-five times in three years without being too repetitive, especially when you have not done anything to add to your achievement or personality and more so when it is for the back cover of the book. Some can make a quick assessment of a person in a few minutes, especially Doctors; you don’t need years of friendship. Last year we asked two people – FB friends to say a few words about us:-

Dr Bhavani’s prompts of two years ago: Mr S Nilakanta Siva, who espoused the ‘new clear physics,’ as he loves to call his profession as a nuclear physicist, comes across as an optimistic and successful cancer conqueror with no inhibitions in ascribing his bladder cancer to his smoking habits of the past.

With an avaricious appetite for credible and reliable medical information, both he and his wife, Rajalakshmi Siva, have dedicated themselves to the task of spreading awareness of life after cancer with over two dozen publications to their credit.

Like him, his two sons and daughter-in-law are IITians. A grandson is an engineering graduate from Athens, Georgia, USA, and now interning with Amazon in Seattle.

Addendum, courtesy Prof Dharani: Mr Nilakanta Siva’s expressions are profound enough to make the readers think logically. The style of his writing is commendable. His views are similar to the ones of a traveller of the globe. His books will surely have the spark to energize low-esteem people. Like Aristotle, he comes out with a strong philosophy that fascinates me ever. He is one of the best teachers in India. Kudos!

My Writings on Cancer

It was about seven years ago. I had just conveyed consent to the surgical removal of my bladder, prostate and ligation at the vascular pedicle of the right ureter leading to the dysplastic kidney due to the Transitional Cell Carcinoma treatment. The doctors had advised that this was the best available option for a rapid return to a decent quality of life.

I started with a 4-page pamphlet, but it was so dull that I doubted if anyone would read it. I, therefore, wrote a book in story fashion with a CA-bladder conqueror as the hero. In the first few years, the royalties from this and several other books promoted by us served to promote and organize Cancer Awareness Day events. And in the last year, these funds were used to fund some financially poor CA-bladder patients’ quarterly review tests like USG, CXR and Blood Tests.

My group, “The Dirty Dozen, now comprising twenty CA-B families, quietly keeps counselling newly diagnosed patients referred to us by their doctors. I remember my roommate at the Cancer hospital: a ten-day-old girl with retinoblastoma. Her mother had a long history of Tobacco ingestion. I played a sheltering role while the whole world cursed the mother. The baby was named Sivaranjani after me, and, now six or seven years old, called to wish me on our wedding anniversary a few weeks ago. I had written a story about that family but did not get the parents’ permission to publish it.

Most newly diagnosed patients are flooded with misconceptions. Friends and relatives invariably talk of others who met their end due to cancer. I had to form a contra wall. I went about convincing every patient that since I could do it, so could they. I’ve cancer became I can, sir. I invited them to my book launches and Cancer Awareness Day events to get together to exchange notes.

It was on No Tobacco Day last year that my attention was drawn to the fact that the only book by an Asian on Stoma care was the one by Dr Balachandar targeting senior surgeons, in particular Gastro-surgeons, and of no use to the nursing fraternity in the hospital or family caregivers at home. I am glad I brought out a book entitled “Ostomy Management And Stoma Care, which was well-received by ostomates across the globe.

Cancer is still a Stigma

It was just a few months ago, in January, that Thiruvaiyaru was abuzz with the Carnatic music extravaganza at the annual Aradhana of Saint Thyagaraja. Like most music lovers from Thanjavur, I went to spend a whole day drowned in the never-ending stream of music. I started looking around to see if I could find a local friend who stayed nearby. Having located one, I requested permission to use their restroom to drain a near-full urostomy bag but was refused on the ground that they had minor children who would contract cancer consequent to my emptying my bag into their commode.

At least this was in a rural home, but at the venue of my Cancer Awareness Day Event in February, two couples walked out midway. It would not have impacted me so much; the teenage kids could have gotten bored with everyone talking just of carcinomas and biopsies that scared them out of their wits. What hurt me was, “It seems the old man had cancer; I might contract it too. Let us get out quickly. This behaviour from educated children of well-to-do families came as a shocker.

I have folks who believe cancer is contagious, infectious, and can be contracted on contact with the patient, and even perspiration and excreta can transmit cancer to others.

An incident comes to mind as I think of ways myths had us as a victim. The most embarrassing, because it was in public view, was at Trichy airport. After check-in and waiting for the wheelchair, I started moving towards the security counter. It was an involuntary natural reaction that I moved half a step and bent backwards when the security probe hit my stoma. A volley of choice Hindi and Tamil unprintable words followed; I was made to strip, was asked leading questions about what I was carrying in the bag, why I was hiding it under my clothing and that I could not board until they proved that it was not a liquid explosive. It was only after a call to my doctor in Chennai that I was cleared, and the flight left after an hour-long delay.

And in the very early stage when BCG was used to clean up my bladder, and intravesical immunotherapy, it was common to hear people asking me to stay away for fear of pulmonary TB attacking them.

And with patients on CTRT (chemotherapy c radiation therapy), the myths are even more devastating. With MPD (maximum permissible dosage) for minors being near zero, they would stand either touching the distant wall or just outside the entrance ten feet away. They believe patients on either teletherapy or brachytherapy are sources of radiation to stay away from.

The Corona lockdown has caused great difficulty in the procurement of urostomy bags, abdominal flanges and stomahesive paste and required some Herculean efforts from my Facebook contacts to procure it from the capital and distribute it to the patients in the neighbouring districts.

All said and done, I felt highly rewarded when the local IMA felicitated us.

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