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Dev (Glioblastoma): Patients Need Good Balance

Dev (Glioblastoma): Patients Need Good Balance
Glioblastoma diagnosis

My wife was India's first female Director-General of Police and had a stellar career. She was the DGP of Uttarakhand and was recently retired. She was still enjoying her life without all the official work and collaborating with the governments of Rajasthan, the North-Eastern states, and even prestigious foreign organizations. We lived in Mumbai, but we had a house in Dehradun as well. At that time, she was in Dehradun, and I was in America for some work. Towards the end of June 2018, she called me to tell me that she had suffered a fall while mountain biking.

She told me that she was lying on the road. She also said that she might have fractured her back. She assured me that everything was okay because the local police were coming to help her. I rushed back to India and visited her in the hospital. She was discharged soon.

Months later, she had a social function to attend, and just before she left, she called me to say that she was experiencing shivers in her right hand and was losing control of the limb. We thought it was connected to the fall and some neuro issues. Our close friends and doctors recommended getting an MRI scan in Mumbai.

It was October 15, 2018, when we went to the hospital to get an MRI, and the neurologist called us the next day. My wife sat in the waiting room while I went inside with the report. He informed me that my wife had glioblastoma, and since it was in the advanced stages, it required immediate Surgery.

Glioblastoma treatment

We had no idea what glioblastoma was. Shewas so calm and relaxed on hearing her diagnosis, and after reaching home, asked what was next. I realized that I needed to find out more, and the next two days were spent researching and reading about the disease. Then we scheduled a meeting with our neurologist and asked him about the prognosis.

The neurologist told us that resectional Surgery was essential, along with radiation and Chemotherapy. The Surgery was a bit complicated, given the size and position of the tumor. A cut of three and a half by three centimeters was needed near the left parietal lobe. It was very risky, and there were chances of paralysis too. He said she would be lucky to live for a year.

In our family, we always used Ayurveda to heal any disease and avoided allopathy in general. After intense discussions and deliberations, she decided not to have the Surgery. It was her choice, and I respected that. We tried to be objective about the whole issue. We shortlisted three doctors for ayurvedic treatment. The first two were from Karnataka and Dehradun, and the third one was in McLeod Ganj. The first two doctors did not warrant a visit, but we decided to visit the doctor in McLeod Ganj for treatment. We decided it would not be appropriate to travel so far under her such health conditions. But suddenly, her health worsened.

The right arm and leg started becoming shaky, and we immediately began an ayurvedic treatment. But, after a month or so, my wife had a seizure and needed to get hospitalized. It was at the end of November. The doctors informed us that the tumor had grown bigger, and it was now pressing on her nerves. They prescribed seizure medications and told me that she might not come back. The next morning, she woke up, and subsequently, the ventilator was removed. She was discharged forty-eight hours later.

She was back home, but the process of deterioration continued. Eventually, we decided to start allopathy medication. She stubbornly refused all surgical options but was open to radiation and Chemotherapy. We continued the Chemotherapy up to March 2019, and everything seemed fine. Then, at the very end, during the sixth cycle of chemotherapy, her body started to react, and her health deteriorated extensively. She lost her mental orientation. Things got very serious, and she was kept under observation. She passed away on August 26, 2019.

She was an inspiration for many.

She was a physically fit woman, even in her late sixties. She used to do yoga, exercises, kickboxing, and half her day was completed even before I woke up. She could run for miles without feeling tired and followed a strict food regiment. She never drank any soda or tea and never took any medication. She also went mountain biking frequently.

Cancer came out of the blue. While recovering from her fall, she was playing the harmonium one day and complained about how her right hand was not working correctly. That was it. There was no real warning or indication of the disease. She never even took an aspirin in her entire life, until her cancer medication and some painkillers to recover from the back Pain.

She refused to take help from the nurses and tried to do things on her own. I had produced a T.V. series back in 1989, called Udaan, based on her life. It motivated many young girls to join the police force. She was the second female IPS officer, after Kiran Bedi, and an inspiration for young women. The T.V. series is going to be re-televised on Doordarshan every Sunday.

The parting message

One of the most important things to do for a caretaker is to ensure a perfect balance in the patient's life. One must take care to give the patient privacy and see that s/he is not isolated completely. Frequent visitors such as relatives and close friends should be allowed, but we must also see that the patient gets his/her much needed calm and peace.

We must also be careful to genuinely empathize with the patient and not offer any fake sympathy. As her sole caretaker, I always tried to boost her courage, motivation, and empathy.

One of the most significant drawbacks for a cancer patient and her family is the complete lack of detailed information in the public domain. No data is available on the new experiments being conducted, no list of things to do, or what to avoid. I had to research and find things independently, with the occasional help from my friends and colleagues. I contacted different organizations and hospitals in the states to find information about any ongoing experimental treatment that could help her.
I want to thank Love Heals Cancer for the brilliant work they are doing in this field, as it will benefit lakhs of cancer patients and their families, both in the present and future.
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