Early Symptoms, Misdiagnosis and the final revelation:
Around April 2017, I and my husband were working in different cities and he was staying in Bangalore alone. He regularly practiced Yoga and was physically fit, but suddenly started suffering from fever, night sweats and breathing difficulties. When it didn't get better for a couple of weeks, we saw a nearby doctor.
Initially misdiagnosed as tuberculosis, he began the treatment in Bengaluru. However, he didn't get better and a senior pulmonologist figured out that something is wrong. After a series of tests and a surgical biopsy, we came to know that he was suffering from T Cell Lymphoblastic Lymphoma, a rare form of aggressive blood cancer.
Gearing up for the fight:
As soon as the news spread, most of our relatives back in Gurgaon and New Delhi started offering help. We felt very lost due to lack of enough information. Blood cancer was not something we knew or understood. We never thought it could happen to us. It took us some time to realise the gravity of the situation. All at the same time, there was too much information and still a sense of not knowing what is the right thing to do-choosing treatment protocols, managing finances, making decisions about our jobs, everything seemed complex.
Lack of Information:
Due to lack of a support system in Bangalore, we took him back to Gurgaon and started treatment there, hoping for a better environment. His extended family has several doctors who helped navigate the first few weeks. He is a person who works with a lot of information and likes to face the truth. Unfortunately, the general approach of doctors and hospitals can be to hide information thinking it will overwhelm the patient and their families. We kept circling around the oncology and nursing staff to find basic things such as length of our treatment protocol.
Our hospital in Gurgaon was extremely busy and crowded and it was hard to get the care and attention Kartikeya needed.
The Tirade against Cancer:
Kartikeya turned out to be his own biggest advocate. While he had all the help he needed from family and friends, he chose to ask difficult questions from his doctors to that they could help him make better choices for his treatment and survival. Keeping in the dark about the treatment protocol is not a great way to deal with a cancer patient.
Ultimately, we spent 3 months getting treatment in Gurgaon and Kartikeya took the bold decision that he wanted to find a hospital and oncologists who would listen and care more. He wanted to move back to Bangalore, start going to work again and resume normalcy in life as far as possible, even with two years of intensive treatment still remaining.
A God-sent Angel:
This is when we understood the importance of doing proper research and consulting and finding a trustworthy doctor and hospital system. We showed Kartikeya's reports to Dr.Hari Menon who had recently started working at Cytecare Hospital in Bangalore. He has been a god-sent angel along with all the doctors and staff at Cytecare. When we met him, we immediately knew getting treated by him would make Kartikeya feel infinitely better. With a rich background of over two decades and a very caring and experienced nursing and palliative care team, we realized how proper care is meted out to blood cancer patients.
The Road to Recovery:
My husband started feeling better! Most of his tumours started dissolving. His blood counts used to fluctuate due to impact of chemo, but Dr Menon gave him the freedom to go to work whenever he could. His philosophy is to allow patients to deal with blood cancer similar to any other disease. Stopping life is no way to live. With the amount of care, respect and love Kartikeya got from his new treatment team, he felt much stronger emotionally and this also improved his physical recovery.
My mom in law took a year long sabbatical to care for Kartikeya. We were both able to join work and were lucky enough to have support at our workplaces too. That had an invaluable impact on the overall situation. The medical treatment got over by the middle of 2019.
The Patient and care giver have to be the biggest advocate. Arm yourself with as much information as possible and ask the right questions. Control the urge to Google prognosis data and side-effects of drugs. Irrespective of our health conditions, it is imperative that we educated ourselves about health insurance. I was so ignorant that I hadn't even added him as a nominee in my corporate insurance.
Most of us underplay our medical problems and are caught unaware when something big like blood cancer happens. Even doctors try to suppress issues. Our country lacks the infrastructure and support system for cancer patients and their families. But with people like Dimple and initiatives like ZenOnco.io, we know that the future will be in better hands.