For several months until August 2013, I suffered from severe and intermittent headaches which were only worsening. Many doctors that I have seen thought it to be a Migraine. One doctor referred me to a Psychologist saying that I was too stressed. Psychologist confirmed that I was too stressed and prescribed me some medicines. In hindsight, it was never psychological. It was physiological. It was a Brain Tumor! An Ependymoma Grade II. A rarest of the rare, especially for adults. And in the most critical part of my brain – The Brain Stem.
I underwent a surgery on 12th August 2013 for removal of the tumour. I was looking forward to the surgery being glad that it would relieve me from headache and paying little emphasis on the after effects and recovery. It went on for about 5 hours. The after effects of surgery were shocking and overwhelming for me. My face was completely paralyzed and I could not see, talk or listen for days and months. My life just turned topsy-turvy!
7 days before the surgery, I had received a degree in Law from the hands of Chief Justice of Supreme Court. 48 hours before the surgery, I played Badminton and won against my brother. And 5 hours prior, I literally walked in to the Operation Theatre saying to the nurse ‘I am ok’ refusing to be escorted in a wheelchair.
After surgery, I spent about 7 days in NICU. I was on riles tube inserted from my nose to the stomach for feeding. I thought I was recovering but the intense surgery has had an effect on my vocal cords which weren’t opposing the aspiration of food from my stomach into the lungs. As a result I have developed Pneumonia and this was slowly but steadily lowering my ABG (Artillery Blood Gases). I had to undergo Tracheostomy on my 7th day after surgery. My trachea was punctured to make a hole to facilitate easy breathing and removal of the phlegm that was in my lungs.
My journey, post- surgery, was like a hurdle race. I encountered each issue one after one – but with grit and determination. Starting from the surgery itself and then the Pneumonia leading to Tracheostomy; higher Creatinine levels due to reaction from an antibiotic; reaction to a blood transfusion due to higher creatinine levels, a fall in the hospital when I tried to walk unattended; Syncope effects (fainting), Lumbar Punctures at regular intervals to facilitate Radiation…My Radiation therapy lasted for approximately 30 days with one minute session each day. But that one minute in the day lasted like never ending ordeal for me. My head was tightly clipped on to the bed so I do not move and the Radiation is precisely targeted to the site of the tumour. What made it so hard for me is that when the mask was clipped on my face to the table, it would create pressure on my surgery part (above my neck) making me faint instantly. If my radiation goes smoothly just even on one day, it was a great triumph for me.
Overall, I was hospitalized for 4 months. I had my Tracheostomy de-cannulated (removed) only before my discharge. So for about 4 months I just did not speak a word! The Riles tube was removed one week after going home following the successful swallow test.
My miraculous recovery would have not been possible without the great support of my family. They have endured more pain than me psychologically. They were so strong that they never broke down in front of me. They have done all they could to put me back on track. Their prayer and faith in God kept me going. The care and help given to me by the Doctors and Nurses was saintly.
Physiotherapy became part of my treatment. I was taught how to sit, stand, walk forward, backward and side ward and also how to swallow, chew properly. You can say I relearned everything from scratch like a new born baby. The irony is that, kids learn everything by themselves but for me it has to be taught in detail.
After 1 year, I was able to see, talk and walk but not perfectly. I was having fluctuating double vision, I used to sway when I walk and I wasn’t able to pronounce few words clearly due to Bells palsies. The Brain Stem controls all the aspects of the face. As the tumour had to be removed from the infiltration of the Brain Stem, it had an effect on all the senses related to my face. My eyes are squint and I cannot move eye balls side wards.
Happy news is that at the end of 1 year, everything is improving at a very very slow rate. Well, my family and I hoping for a more improvement this year and coming years aiming to become as healthy as before.
When I look back at my life to see what a roller-coaster ride it was for me from being a chirpy girl with hunger for knowledge to a sudden twist of tale where I had to learn to speak. Life has tested me by throwing upon some of the difficult challenges. My advice to anyone with a Brian Tumour is not to lose hope and face it with faith, fortitude and a resolve to beat it. I can’t thank enough my parents and my brother whose love and prayers has always been beside me in my journey.