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Riddhi Hingarajia (Glioblastoma): Hang in There; Don’t Loose Hope

Riddhi Hingarajia (Glioblastoma): Hang in There; Don’t Loose Hope

Detection/Diagnosis

Till 2018, our life was like a fairy tale and then suddenly life turned around. My husband didn't have any symptoms, but suddenly on June 13, 2018, he was not able to speak, was feeling something in his hand and not able to move his hand. He woke me up and I saw he was tightening his hand so I asked him what happened but he didn't reply. I didn't know what was happening to him, he was falling backwards. It was 11:45 at night, I called a relative and neighbors and they came but even they didn't get to know what was happening to him. We sprinkled some water on his face and he became a little conscious but then he had bleeding from his mouth. We took him to Apollo Hospital and he got admitted in the emergency. He was monitored and his organs were okay, I asked doctor what was happening to him and the doctor said that it was seizures. We got his MRI done and doctors had some doubts seeing his reports, so the doctors kept him admitted and did spectroscopy and they diagnosed Demyelination.

The doctors said that they would give medications for one month and then they would do MRI again. He didn't had any symptoms for one month expect that his right hand became weak. After one month we had his MRI done again, and then consulted neurosurgeon, and neurophysician. Everyone said that there is something but they had to do Biopsy to exactly diagnose what it was. But then the doctors said that Surgery was not possible because of the location of the tumor. He had his Biopsy done on 21 July 2018 and we got his reports on 24 July which were not good, it was grade 3 malignancy.

We thought that we would find some solution for it. We sent samples to NIMHANS to confirm what it was, and it turned out to be grade four glioblastoma (GBM), which is the worst type of brain tumor.

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Treatment

We started his radiation and along with that Yoga too. We hired a professional Yoga teacher and he would do Yoga in morning and evening too. We started having organic food, and started having more turmeric and homemade khadhas.

He was undergoing Chemotherapy and radiation at the same time. We thought that there will be some side effects of radiation but he didn't had any side effects and everything was going on very steadily so we thought that we will be out of this.

Until March 2019, everything was going fine; he was practicing yoga continuously and was undergoing chemotherapy monthly. We thought we were trying and everything was going smoothly, so somehow we would get out of this situation. We thought that we would be satisfied if he is not cancer-free, but we would be there for each other.

We got connected to Ms Dimple during this time and took her help. I was in contact with her and I used to share my thoughts with her.

In March, he had some weakness and we thought that it might be because of Chemotherapy but that was actually because of the tumor. The cancer cells had started resisting the chemotherapy, so in March the the tumor got bigger and that is why he had hemiplegia in left side of his body.

We did the MRI again and we found some aggression. He always knew what it was, and later we thought that we won't disclose to him that it has started increasing.

We then started another Chemotherapy but he was feeling that there was a progression.

The second Chemotherapy started working well and he started showing response to the Chemotherapy. He was not able to walk so we started physiotherapy too and just after first Chemotherapy he started walking.

I used to talk to Ms. Dimple about how they had gone for clinical trials, and I also wanted to go for that. I was trying my best to find a cure, even if it meant going to foreign countries, but everyone told me that it does not have any cure anywhere in the world. The doctor said that it would be very expensive for me to go to a foreign country, but I thought if I have my husband with me, then I can manage financial crises too. Every doctor was trying to convince me not to make the decision hastily and to think before taking any step forward.

He was okay until May; he was able to walk with our help, so we thought that he was getting better. Then in June 2019, the chemotherapy also started to resist, so when we had another MRI, although the tumor hadn't grown more, he stopped speaking and was unable to respond.

I met the oncologist and said I was ready to go anywhere in the world for his treatment. But then the doctor suggested we try the Keytruda drug, which is very costly and had to be administered every 20 days. I read about it and tried that drug too, but even that was not working for him. When the doctors were suggesting a third type of chemotherapy, by then he was unable to speak and was not even responding. He could only respond through his eyes.

I asked the doctor for a third chemotherapy, and he said that it was the last chemotherapy we could try, but we could only expect 3-4 months from it and not more than that. I asked the doctor for a permanent cure, and he said that there is no permanent cure for it. My oncologist was very good; he supported me a lot. My neurosurgeon was my friend, and he also helped me a lot. There were side effects from the third chemotherapy too.

The doctors were saying that we could only expect 3-4 months, so I thought, why give him more trouble or put him through more suffering? We also took Ayurvedic medicines from Dharamshala, but they didn't work for him. There was always some hope; we never lost hope. At last, we found a relative knowledgeable about Ayurvedic medicine, so I trusted them, and we tried those medicines too.

We were administering the medicines through a Ryles tube because he was unable to swallow food. On August 15, 2019, it was a day off for everyone, and there was heavy rainfall that day. He was having some problems breathing, so we checked his oxygen level with an oximeter, and it was around 75.

I called the ambulance, but they couldn't come; however, I managed to admit him to the hospital. All the doctors said that he was very critical. They kept him on oxygen and a ventilator, but even then, he could not breathe properly. He then underwent a chest X-ray, and we learned that his lungs had collapsed. The doctors drained the lungs through chest tube insertion. We found out that he had breathing problems because he had pus in his lungs. After the doctors removed the pus, he was able to breathe but was still on the ventilator.

He used to respond through his eyes, so I thought he was getting better. I just wanted him in front of me, no matter what his condition was. He was in the ICU for 20 days and underwent a tracheostomy too. I always had hope that a miracle would happen. I was waiting for a miracle, but it didn’t occur. At last, his blood pressure started dropping, and I lost him on September 3, 2019.

I feel he is still there with me

I feel that he is still there with me; it's just his physical body that is not with me, but he is always there. I feel that whenever I am in trouble and have difficulty making decisions, he is the one who always helps me choose the right path. He was passionate about his life and sports activities. He loved his daughter the most; Ananya was the reason for his breaths in his last days.

I sometimes questioned myself: Did I not take care of him as I should have? Did I miss something in my efforts? But then my friends and family supported me a lot. I did everything possible for me. Everyone made me understand that he was satisfied with what I did for him, so I should not think this way. He used to tell me that I was doing a lot for him, and these words from him were the motivation and satisfaction for me.

He was an amazing person, and I can't forget him. Our journey has been very beautiful; we have a lot of memories to cherish. I am now both a father and mother to my daughter. I now try to fulfill every wish my husband had, whether it be related to our daughter or to society.

The legacy he left behind

I met Nutan very late in my life at TCS during 2015. I think I regret this misfortune as I should have met this guy much earlier in my life. But when we finally met, this bond of friendship soon turned into brotherhood. We both considered each other as brothers. I still call him my "BHAI". He was not only my colleague but also a great friend. He was the kind of 3AM friend you can always turn to, even at 3AM, for any help. We both used to share that "tea" time at least twice a day during work, and we looked forward to it every day because it was "LIFE" to us. We used to talk about work, life, family, and his favorite topic, "POLITICS". I sometimes deliberately used to go against the BJP to tease him, and he would argue with me to prove the BJP is right.

His work skills were unparalleled, with lots of expertise in his domain, and his hunger to do something for his own business was remarkable. He often used to discuss ideas where he could spend time to bring a fruitful product to the masses. His ideas were innovative and sometimes boring, which I used to laugh at and dismiss. I could write a book about him, but the only thing I want to say is "I MISS YOU BHAI," and I just wish you are at peace wherever you are. Just keep smiling the way you always did.

Nutan is my best friend; I have known him and his family for more than 10 years. Among my friends, he is known for his innovative thoughts. I am from Hyderabad, and he is from Gandhinagar. I used to feel that a day without talking to him is a dry day. Above all, he was so kind and strived for achieving bigger things with a lot of patience. This attitude helped him to fight against deadly cancer too. It seems he recovered at some point, but I was very sorry to hear the bad news in the end. He left a lot of memories with us, keeping him alive in our hearts and keeping us motivated. My dear friend, wherever you are, we still remember and love you; keep us motivated.

We used to ask him during his treatment that How is the JOSH?

He used to say JOSH is high sir. Thus, he fought very bravely and with great positivity. He was a jovial guy and always used to wear smile on his face.

Nutan, it has been 3,63,74,400 seconds since you departed and I have 3,63,74,400 reasons to remember you.

Thanks for your selfless love, care, and compassion, which I will cherish as a legacy throughout my life. You are not only a friend; you are a lifeline. I believe in the philosophy of a "Connected Soul," and hence, over the past year, I have felt your virtual presence many times in life whenever I got stuck.

Excerpted this from one of friends Status and feel this holds very true for our friendship "Ruh se judhe rishto par farishto ke pehre hote hai"

Be with me always and keep enlighten my path. Missing you lot along with me in my #life2.0

Parting Message

Whatever is written in our destiny will happen. We should not give up. We should have a positive attitude because it is good for our physical and mental health too. No one knows when our last day is, so we should enjoy each and every moment to the fullest. Being positive helps in healing.

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