It all started with an extreme headache. When I bent down, I felt everything flowing downwards and then flowing backwards. I initially suspected it could be related to asthma, so I consulted a doctor. However, he attributed it to stress and recommended seeing a psychiatrist. Despite this, I was skeptical because I knew stress wasn't the cause.
Later, my dad suggested going to a neuro physician. But when I went to a neuro physician, he referred me to a neurosurgeon. So we came to Hyderabad, consulted a neurosurgeon, and got my MRI done. In the reports, we found that it's a Brain Cancer tumour, but I was unaware of the news that I had been diagnosed with Grade 2 Ependymoma.
I was delighted and was looking forward to the Surgery because I thought that it could bring a halt to my headaches. Even my mother was looking forward to the Surgery with the same mindset.
The doctors had discussed with my brother and not with my mother or me that I may end up losing my eyesight, my limbs, or walk. It could be any of it or all of it, and I didn't even know any of those things at that time.
It was a very aggressive four and a half hours of Surgery. Doctors almost removed 99% of it, so my facial nerves, optical nerves, and everything got affected. I lost my eyesight, my talking and hearing ability, and couldn't even walk.
Every day in the hospital was a struggle. I didn't know if I would wake up each morning. I developed pneumonia and had to undergo a tracheostomy. With the tube in place, I couldn't open my mouth or speak for three and a half months. My mother was worried if I would ever regain the ability to speak.
My face was paralyzed; I couldn't move any part of it. I remember my brother asking me to smile, but I couldn't even convey that I was smiling inside because I couldn't move my lips. I couldn't express anything through my facial expressions, and I couldn't even write properly because of my impaired vision.
To make things worse, my creatinine used to shoot up to 6, and doctors were confused about whether to do dialysis or not because I already had a lung infection. So, they didn't take the risk and gave me medicines and increased my water intake. After one week, point by point, the creatinine level started to decrease.
Later, my radiation started. But I had surgery on the backside of my head, and there was a big bulge there. When I laid down for my radiation, I almost lost consciousness, so again the radiation would be canceled and rescheduled for some other day. Every week, doctors used to perform a lumbar puncture before radiation. Even the doctors were worried that too many lumbar punctures could affect my spine, but they had no other choice. That process was harrowing, so every day, I felt like I didn't want to go through with it, but somehow, I managed to complete my radiation.
One day I had a fall, and again, it created a very panic situation because I had undergone surgery and already had a big bump on my head. I was immediately taken for scans and other tests, but fortunately, nothing had gone wrong. Later, I was given physiotherapy sessions where I was taught how to sit on a chair, how to walk forward, backward, and sideways, how to swallow food. I had to relearn everything from scratch and used to ask my parents how to do simple things because I couldn't even remember those things.
But then finally, I successfully got discharged from the hospital, and even my tracheostomy got removed.
Even after coming home, I was on my ryles tube only. After one year, I was able to see, but I could only see blur images.
My eyes don't move sideways. I developed a squint after surgery, and because of that, I have double vision, even now. I used to bump into doors because I could see two doors, and I could not figure out which one was the original. Because I couldn't see correctly, I lost my balance and used to sway when I was walking or standing.
I underwent eye Surgery in 2015, but it was not successful. I had dry eyes and a dry mouth. I could have lost my corneas because of the dryness, but I used to put eye drops frequently to keep my eyes moist. Because of the dry mouth and absence of saliva, I couldn't eat spicy food; I'd lost a protective layer to my teeth, so they became so brittle that even if I bit a biscuit, my teeth would break off. I underwent 12 root canal treatments, and all my four wisdom teeth were removed.
Every dental procedure was more excruciating than my radiation. I used to cry silently on that dental chair every time. I couldn't even open my mouth. It had to be done in 2-3 sittings as I couldn't stand all that Pain in one sitting. Saliva plays a vital role in our body that no one is aware of or cares about, but I do now.
When I had radiation, I lost my eyebrows and hair and had patches on my head. So, when I came to my apartment, people literally got scared to even look at me.
My face had changed completely due to the Surgery. I still don't know how that happened. It took me around three years to accept my face because, by the age of 25, your brain registers how you look. When I look in the mirror, it's not me; it's someone else, and it took me a very long time to accept it. Anyways, I couldn't see correctly, but still, even if I looked in a mirror, I couldn't recognize myself. It used to take a moment to realize that okay, that's me.
After the facial paralysis due to the initial Surgery for the brain cancer, my one side had improved, but the other side didn't improve at all, so my face used to be lagging in one side. After discharge, the physiotherapy for my face went on for two years. They used to give me electronic stimulation to stimulate my nerves. That was another painful procedure.
It took a year for the bulge to go away, and the fluid in my head applied pressure on my optic nerves, causing them to swell. My neuro-ophthalmologist was concerned after looking at the scan reports because the nerves were swollen, and if the pressure increased, I could have lost my eyesight forever. He wanted my neurosurgeon to address the fluid, but my neurosurgeon was hesitant to perform any procedure because it would require placing a stand inside to drain the liquid, which could pose further risks if he needed to open my brain again. He couldn't take the risk of the Surgery and preferred to wait. I was very confused because both options were risky, and I am still waiting for the right time to undergo the Surgery and fully regain my eyesight.
After that, I wasn't happy staying at home with all these thoughts swirling around in my mind, so my brother approached an advertising agency, since that is what I had always wanted to do. He asked them as a favor if I could come to the office for 3-4 hours to boost my morale. They were such wonderful human beings that they agreed. Despite the paralysis, I wasn't able to sit, walk, talk, or even see properly, but still, they decided to let me in, and I am still working with them in the HR department.
I can't do what I want to do, even basic things like playing badminton or running or walking like everyone else. I love playing badminton, but now I can't because I cannot estimate or judge correctly, and it gives me a kind of bumpy feeling in the head and results in a headache. I can't step out on roads because I can't see properly. But I don't want to look at it that way; I am fine, and I am going to do it. I am never going to give up; I am not accepting defeat.
I get my motivation from my family, doctors, and nurses. I couldn't have done anything without them. Every moment, every second I was, and am still struggling, but I don't want to give up for the sake of the family. I was just 25 when I got diagnosed with brain cancer - Ependymoma. I had many more dreams and visions of my life. I planned my education. I wanted to have a business, and I used to tell my friends that start reading the newspaper, and one day, you will definitely read an article about me being a successful businesswoman. Being a successful businesswoman was my dream.
When I was on a wheelchair or stretcher, I used to look around at people in the hospital, all of my age, smiling, walking, doing everything, and I used to ask myself why I am like this? But now, I need to get over all these. I need to go and chase my dreams. Now, I want to have a happy and healthy life, and I wish that for everyone. Only if you have health, you can do anything. I see people running behind material possessions, but they don't realize that they are doing so, putting their health at risk.
I used to sketch. I love painting, and I do pencil sketching. Even without proper vision, I wanted to do something for my doctor, so I made his sketch. I also used to play the guitar. My brother used to take me out on the hospital campus so that I could spend some time in greenery. All these things used to relax my mind amidst all the chaos. Initially, I was not fond of going to the top floor of the hospital to watch the view, but gradually, that became one of my most favorite parts of the day for which I used to wait for my brother.
I gained so much confidence after going to the office. No one discriminates me there; everyone encourages me.
I believe that life doesn't challenge you with things you can't handle. It only gives you whatever you can handle. Many miracles have happened in my life. I have learned to be positive. I don't complain; instead, I count my blessings that I have an amazing family and got a fantastic set of doctors.
I believe that life doesn't challenge you with things you can't handle. It only gives you whatever you can handle. Many miracles have happened in my life. I have learned to be positive. I don't complain; instead, I count my blessings that I have an amazing family and got a fantastic set of doctors.
Never give up, don't look on the negative side, and never get demotivated. It's your life; you have to deal with it. Never allow anyone to give sympathy to you or cry in front of you because that will weaken you. Don't demotivate yourself and also don't let your family get demotivated. You will get through this. Kick cancer out of your body.
Caregivers should also be positive. Don't ever allow people who just come to give sympathy, because, at the end of the day, it's only you and your loved ones. Exclude all the junks from your life.
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