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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 had any symptoms, but suddenly at 13 June 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 replied. I didn't know what was happening to him, he was falling backwards. It was 11:45 at night, I called a relative and neighbours and they came but even they didn't got to know what was happening to him. We sprinkled some water on his face and he became little conscious but then he had bleeding from his mouth. We took him to the Appollo 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 will find some solution for it. We sent to samples to NIMHANS to confirm what it was and it came out grade four Giloblastoma (GBM), which is the worst Brain Tumor.

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.

Till March 2019, everything was going fine, he was doing Yoga continuously and was taking Chemotherapy monthly. We thought we were trying and everything was going smoothly so anyhow we will be out of this situation. We thought that we would be satisfied if he is not cancer-free but we will be there with 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 that they had went for clinical trials and I also wanted to go for that. I was trying my best to find a cure even if I had to go to the foreign countries but everyone said to me that it does not have any cure all over the world. The doctor said that it would be so expensive for me to go to the foreign country but I thought if I have my husband is with me then I can manage financial crises too. Every doctor was trying to convince me to not to take the decision hastly and think before taking any step forward.

He was okay till May, he was able to walk with the help of us so we thought that he was getting better. Then in June 2019, the another Chemotherapy also started resisting so when we had another MRI, though the tumor didn't grow more but he stopped speaking, he was not able to response.

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

I asked the doctor for third Chemotherapy and he said that it was the last Chemotherapy and we could try it but we could only expect 3-4 months from it and not more than that. I asked the doctor for 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 of the third Chemotherapy too.

The doctors were saying that we could only expect 3-4 months so I thought that why to give him more trouble or put him to more suffering. We also took ayurvedic medicines from dharamshala but that didn't work for him. There was always some hope, we never lose hope. At last, we found an ayurvedic relative who had some logical facts about the medicines, so I trust them and we then tried those medicines too.

We were giving the medicines through ryles tube because he was not able to swallow food. On 15 August 2019, it was an off for everyone and there was a heavy rainfall that day. He was having some problem in breathing so we checked it from oximeter and it was coming around 75.

I called the ambulance but they couldn't come but I tried and managed to admit him in the hospital. All the doctors were saying that he was so critical. The doctors kept him on oxygen, and ventilator but even then he could not breath properly. He then underwent chest X-Ray and then we got to know that his lungs got collapsed. The doctors filtered the lungs through chest tube insertion. We got to know that he had breathing problems because he had pus in his lungs. After the doctors removed pus, he was able to breathe but was still on ventilator.

He used to respond through eyes, so I thought that he was getting better. I just wanted him in front of me, no matter what condition the condition is. He was in ICU for 20 days. He underwent tracheostomy too. I always had hope that some miracle would happen. I was waiting for some miracle to happen but it couldn't. At last his BP started getting low and I lost him on 3 September 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 with me. I feel that whenever I am in trouble and I have trouble in decision making then he is the one who always help me in choosing the right path. He was passionate for his life and sports activities also. He loved his daughter the most, Ananya was the reason for his breaths in his last time.

I sometimes used to question myself that did I didn't took care of him as I should have, did I missed something in my efforts but then my friends and family supported a lot. I did everything possible for me. Everyone made me understood that even he was satisfied from what I did for him so I should not think this way. He used to say me that I am 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 forgive him. Our journey has been very beautiful, we have a lot of memories to cherish. I am now a father and mother both for my daughter. I now try to fulfill every wish my husband had, whether it be related to our daughter or to the society.

The legacy he left behind

I met Nutan very late in my life in TCS during 2015. I think I regret this fortune as I should have met this guy very early in my life. But when we finally met, this bond of friendship soon turned into brotherhood. We both used to consider each other as brothers. I still call him my "BHAI". He was not only my colleague but also a great friend. He was kind of a 3AM friend who you can always turn to even at 3AM for any help. We both used to share that "tea" time twice a day at least during work and we used to look forward to that time everyday because that was "LIFE" to us. We used to talk about work, life, family and his favorite "POLITICS". I sometimes deliberately used to go against BJP to tease him and he would argue with me to prove 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 the ideas where can spend time to bring a fruitful product for the masses. His ideas were innovative and sometimes boring which I used to laugh and dismiss. I can write a book on 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 knew him and his family more than 10 yrs. Among my friends, he is known for innovative thoughts. I am from Hyderabad, and he is from Gandhinagar, I used to feel a day without talking to him is a dry day. Out of all he was so kind and strive for achieving bigger things with lot of patience, this attitude helped him to fight against deadly cancer too. It seems he recovered at some point of time but , I was very sorry to hear bad news at the end. He left lot of memories with us to see him alive in our hearts and keeping us motivated. My dear friend, wherever you are, we still rememberand 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 own as a legacy throughout of my life. You are not only a friend, you are lifeline. I do believe in philosophy of "Connected Soul" and hence since past entire year felt your virtual presence many a time in life wherever 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 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 our fullest. Be positive because it helps in healing.