Mrs. & Mr. Nilakanta Siva – Acceptance is an Art

Check out Part #1 about the Mrs. & Mr. Nilakanta Siva

Part #2

Better half of Mr. Nilakanta Siva

Better half of Mr. Nilakanta Siva

Mrs. Rajalakshmi Siva is Mr. Nilakanta Siva’s better half and caregiver. Nilakanta Siva is a cancer survivor who beat all the odds of his disease with her support. She has endured a lot, along with him. All of that suffering has only made her stronger. She has also been the silent co-author of many of his books on defeating cancer. 

The couple organizes cancer awareness events. Last year they even supported four bladder cancer patients by funding their quarterly review tests – All this out of the royalties earned from the sales proceeds of their books. But her demeanor is oblivious to the positive influence she has over their work.

Rajalakshmi Amma has a warm and radiant smile, sparkling eyes, and a robust understanding of her role as a caregiver. She speaks with authority on caregiving for a loved one, ably backing her observations with her personal experiences. For someone whose life was all about taking care of her husband and two children, Rajalakshmi Amma is a fastidious personality who knows how to face the harsh realities of life.

She says, “I come from a family that has some very empowered women to look up to. A woman must understand that she has the power to turn around things if she stays positive and looks beyond the immediate challenges. My mother, grandmother, and great-grandmother were living examples of how women can and should manage families.

If everything is fine and you live a smooth life, there is nothing much to it. But, a woman’s life is never that. Some women share their stories, but most don’t. But everyone draws strength from within. You must learn to look beyond your immediate circles, the nonsense they flush out on you, and you must know to stay positive with a smile, always.

Yes, I am no superwoman. But when I had to confront the truth that my husband is now a bladder cancer patient, my practical reaction was, “What next ?” I was 57, my children were far away, and I was not used to making decisions. The only silver lining in this whole exercise was that we were not dependent on anyone for finances. Yet, the news about his cancer shook us from our roots.

Luckily for me, my nephew and co-sister, a Homeopathic physician, counseled us and said nothing would happen to him overnight. I started gathering information, and his uro-oncologist, Dr.N.Raghavan from Apollo Hospitals, Chennai, was a huge blessing. He adopted me as his mother and WAS and IS very supportive of his recovery. He is now part of our family.

The first few days of facing the truth about his disease left me in a state of shock and confusion. I was, in an odd way, concerned about what was going to happen to me. Slowly it dawned on me that I should be thinking about him – the patient – and not about me or worry about how I will handle this. I had to decide on the many ifs and buts and hows about his hospitalization, surgery, and treatment. He, too, put on a brave face and decided to take on a 7- hour surgery – The doctors told us that the surgery would completely eradicate the cancer spread.

Doctors told me that they would remove his bladder, and an external bag (urostomy bag) will now serve as his bladder. His uro-oncologist performed a robotic surgery, and I was told it was performed exceedingly well. I could only observe that the patient went through with minimal blood loss, minimal pain, and minimal trauma. The quirky thing was when they opened him up. They found that he was living only on one functional kidney for a long – God only knows for how long! So the surgeons had to address that issue too.

My husband has a very resilient mind, and his frail body kept up with the commands of his mind. His recovery post-surgery was remarkable, and he was walking by day 7. We just wanted to get back home, and so we got discharged and headed home. Later, doctors told me that even young patients take a lot longer to get back home. I also noticed that many of them quickly slip into post-surgical complications depending on their state of mind and body. But we were past this first milestone without any trouble.

The next big challenge was to face family, friends, neighbors, and societal prejudices. Their curiosity and ignorance killed us. I sought to minimize the damage and so never wanted a caregiver for my husband. I took on that role. I got trained to be a full-time nurse for him and did everything with a smile – As much as I could manage to do so.

In under six months, he recovered fully. Until then, he needed support for everything. He could not shave, could not brush, or could not have a bath by himself. As a very independent person, it was killing him to seek my help for everything.

But that phase is over now. I am not a caregiver to him anymore. I am only his friend and wife, and he is perfectly normal now. But I share my learnings with all those who are stepping into a similar role. Women can be excellent caregivers – But for most of them, ignorance about the disease and the social pressures and prejudices can sap their energies. My husband and I spend considerable time volunteering, sharing our experiences with cancer support groups, assuaging fears about confronting the disease.

One woman I know could not deal with her husband’s condition as a bladder cancer patient. She snapped and is currently hospitalized for mental health issues. The last I heard, she is undergoing treatment for depression. It is unfortunate.

I also am often asked, “How much did it cost you ?” Yes, we were fortunate there too. We did spend 4 Lakhs for surgery and treatment, but it was reimbursed as we have a health card from BARC. We could focus on recovery because we did not have to worry about finances. Dr. N.Raghavan said we should watch out for symptoms of relapse, and five years post-surgery was supposed to be our significant milestone. We are now 6.5 years post-surgery, and we have made it!

This cancer affliction has thrown us into boiling water. But it also cleansed us and has given us a new purpose in our lives. We are now motivators, teachers, and empathetic fellow human beings. My top eleven learnings that I would like to share with any caregiver who is taking care of a cancer patient at home are:

1. Just follow your oncologist’s advice every step. Seek clarifications, but do not let your ignorance and half-baked google knowledge come in the way of your loved one’s treatment.
2. Remain positive and always remember that you are never alone in this fight. A lot of people have been cured completely. There is no reason not to fight the disease with confidence.
3. As a caregiver, always wear a smile on your face. Don’t ever get stressed or irritated with the patient. They need all your care and love at all times – even when you are feeling low. Remember the good times of your life, and the bad moods will fly away. Remain bold and patient.
4. Do take care of yourself too. Learn to look beyond the immediate situation. Let your face remain an index of your inner peace. Practice yoga, meditation, or, if you feel like, spend some time reading or listening to shlokas – Make sure you support yourself emotionally as a caregiver.
5. It is absolutely fine to try alternative medicine, like Homeopathy, as augmented therapy. Homeopathy has suitable immune-boosting formulations. It helped my husband fight the disease without any side effects – These are not cancer-specific treatments. These are just immune-boosting meds that anyone can take. One can use them even for the current COVID19 situation as immunity boosters.
6. Do not ever offer raw vegetables to a cancer patient – Not even salads. Even a healthy person should eat only well-blanched and semi-boiled vegetables; Never any raw vegetables.
7. The best immunity boosters are in your kitchen. Powder Cardamom, Cloves, and Cinnamon (the 3 Cs from your spice box) and store it. Mix a spoon of this powder with honey and gulp it down. Or just add this powder to your tea. It is the best immunity booster you can ever have.
8. Take a daily dose of Vitamin C. Just squeeze half a lemon into a bottle of water and drink it every day. Papaya, grapes, lemons, gooseberry (Amla) – all these are excellent sources of vitamin C. Make them part of your daily diet.
9. Twenty minutes of walk, 5 minutes of Pranayaamam, and 10 minutes of stretching exercise every day can keep you fit for years to come.
10. Cut down or stop smoking and drinking – This advice is for everyone. These practices do you no good in the long run.
11. Self-discipline is the key to living a healthy life. Do not wait for the onset of a disease to alter your lifestyle. Start young, and remember this vehicle called body is given to you to achieve some great purpose in life. Respect it. Alter your food habits as you age and make choices based on your system’s calorific and nutritional value. There is so much wisdom to be shared with this world – You can do it only if you stay fit, healthy, and independent.

And remember, your loved ones are yours because your destiny is intertwined with them for a reason. We are born and bonded to live together.

Learn to appreciate life, and take life as it comes.”

That closure got me thinking – Here is a remarkable woman who can inspire girls, ladies, and women of all strata. She was bold enough to step in as an enterostomal therapist for her husband, and she cast aside her doubts and apprehensions to address the immediate needs of his condition with clarity. It is not every day you come across such Hatke stories.

Like us on FB, if you find our content interesting: https://www.facebook.com/hatkestoryofficial/

Do you have an interesting incident or experience to share with the world? Write to us, and together we can discuss how to weave your story and present it to the world. Would you mind sending us your story?