When A Chitra, 38 from Bengaluru started having seizures, she was initially treated for epilepsy but was eventually diagnosed with Malignant Glioma, a type of brain tumour. She shares how she handled the gamut of treatment and the emotional distress with the support of her team of doctors, family and friends and employer.
Chitra, please tell us a bit about your condition
I was diagnosed with brain tumour called Anaplastic Astrocytoma Grade III. It is a rare, malignant tumour also called Malignant Glioma.
When were you diagnosed?
I was having seizures from February 2010. An MRI of my brain was taken in October 2011, the report of which mentioned Glioma. The biopsy of samples taken out during surgery in the same month revealed that it was Anaplastic Astrocytoma.
हिंदी में पढ़ें: मेरे ब्रेन ट्यूमर के निदान ने मुझे बोल्ड बना दिया
What were the early symptoms? What made you go see a doctor?
I started having seizures in February 2010. Initially I could not identify that what I was experiencing was in fact a seizure. Static things would appear moving to me for a few seconds. I would hear what others never spoke. I had also blabbered unrelated sentences in a few mobile calls. Gradually I started losing consciousness. I underwent EEG and got to know that I was epileptic. In August 2010, we consulted a reputed NeuroPhysician in Bangalore. He started prescribing me anti-convulsants. The dosage and number of medicines kept on increasing; however I still got seizures at least twice each month.
On a particular day, I got seizures twice on the same day – once in the morning and once at night. We met the NeuroPhysician soon after and he advised an MRI which made it evident that I had brain tumour and would have to undergo brain surgery. This was in October 2011.
Please describe your experience of managing your condition.
Life was very difficult when I had seizures. It was impossible to say when one would hit me. I have even had seizures while crossing the road. From January 2011, I was consuming 10 anti-convulsants a day, which made me feel drowsy. It was difficult to concentrate on work.
The moment the MRI disclosed that I had tumour I became happy since I would be free of seizures once it is removed. Thankfully, I did not look up ‘glioma’ and realize it was cancer, because of which I was able to fully co-operate for the surgery.
Since the tumour had spread across the left frontal region of my brain, which controls key aspects including speech, vision and hearing, my neurosurgeons decided to proceed with Awake Craniotomy. I was given partial anesthesia; the surgeons would periodically ask me to read the pictures from a sheet during surgery. This exercise took place three to four times during the surgery.
Post-surgery, I was given radiotherapy and chemotherapy. I am extremely thankful to my team of Doctors for the medication, motivation and care they provide me even today.
I am a Software Engineer at IBM India and I express my gratitude to the company and management for keeping me on roles even after the diagnosis and trusting that I would get back to my feet and give my best gradually.
When I started working during chemotherapy, it took me more time to understand, concentrate and work. However, my colleagues and the management were good and encouraged me. No one ever hurt or insulted me for my slowness. Being employed helped me be pre-occupied with my work and worry less about my health. I had the urge to complete work in time and regain the good name which indirectly supported the healing process.
What is your present condition?
I am healthy today. I still have to continue on an anti-convulsant as there is a risk of getting seizures if I stop all anti-convulsants.
It did take some time for me, nearly a year to be attentive and resume work. Since then, I have been growing in my career and even obtained a promotion. Today I have a Patent granted (with my team) and another filed.
A temporary medical condition is not going to cripple our abilities throughout life. We have to endure the treatment, have confidence and resume life.
Have you had any related complications from your primary condition?
I am still on an anti-convulsant Frissium. I had partial seizures last year and another tablet got added to the list. I need eight to nine hours of sleep to lead a normal day.
What was your course of treatment? What medications are you on currently?
I underwent Awake Craniotomy. Since the tumour had spread across a crucial region in my brain, it was not possible to remove till the last bit. Thirty three sittings of radiotherapy were then administered. A mild dosage of the chemotherapy medicine – Temozolomide 60mg had to be taken an hour before radiotherapy, so that the cancerous cells would get activated. My Doctors had to spend more time on the radiotherapy plan as the remnant cells were also at crucial locations. There were 6 radiotherapy sessions each week, I used to literally wait for that one day without treatment. There were 12 anti-convulsants to be swallowed during that point in time. Along with that, Pantadoc, a tablet to prevent vomiting and certain steroids were also prescribed. Doctor had advised to remain on empty stomach for three hours before taking Temozolomide. I had to wake up at 7:30 am, take Pantadoc, then tea, go for a walk, then have breakfast and medicines by 9:30 am, then reach hospital, with my father, by 12:30pm, have Temozolomide at around 12:40 pm and go to the treatment room by 1:40 pm. The treatment lasted only for 8 to 10 minutes. I used to feel dizzy after treatment. Mother served me hot lunch after reaching home. I generally took rest in the evenings.
After a 15 to 20 day gap, chemotherapy started in January 2012. Chemotherapy was prescribed for 5 consecutive days each month and I had to take a medicine at home. Before chemotherapy, the patient has to undergo a blood test primarily to check the WBC count. I was on Temozolomide 300 mg for 6 months and then on Temozolomide 250 mg for 3 months.
Were there any side-effects of the medicines? If yes, how do you manage them?
I had mild pain and difficulty in opening my mouth after surgery. It got alright in a couple of weeks. The steroids made me bloat. They also caused minor skin allergy. The malignant cells were at a location that the treatment given to destroy them had a very minor impact on my vision, I am using spectacles now. Constipation was a pain throughout the treatment, especially during radiotherapy.
Temozolomide caused vomiting. I had to compulsorily take an anti-vomiting pill with it. Cannot forget the number of times it disturbed me on the 4th day of my 6th month of chemotherapy. It was a Sunday, but Dr. Amit Rauthan is so good that he picked the mobile whenever we called and advised on the medicines to be taken to bring the situation to control. I totally disliked outside food and nausea would overcome me even when I smelt it.
Needless to say, it was a difficult time and God gave me the strength to ignore the difficulties and only concentrate on becoming well.
What kind of specialists do you consult and how often?
I consult my surgeon to check on whether I need an MRI and show the reports to him. Recently he advised to do a MRI once a year.
I regularly consult a neuro physician and he advises me on the anti-convultants. He keeps an eye on my consultations with other specialists and the medicines consumed. My doctor is now a good friend and well-wisher and he studies my MRI reports and provides us details.
Have you learnt anything in managing in your condition that you wish you knew before?
Well, the one year (rather 18 months) delay in MRI had let the tumour grow and take control of me. Many of my relatives and well-wishers advised me to go in for a second opinion but I did not take their word into count. Had we identified the tumour earlier, it would have been much better for me.
It is not possible to remove all the anti-convulsants a patient is taking at once. That could result in seizures. Since I was taking 10 anti-convulsants a day before my surgery, and Frissium 10mg was added to it, it took my doctor 4 years to bring it from 12 to 2. Imagine the side effects my body would have had due to such a huge count of tablets. A second opinion would have definitely helped me a lot. I missed it
What changes have you made to your lifestyle because of your condition?
I sleep for 8 to 9 hours each night. Pampered by my family, I hardly do any household work or cooking.
Well, the ailment made me write blogs. My article, “A cancer survivor’s testimony of battle” was published in The Hindu’s Open Page. I write both technical and personal blogs. I thoroughly understand the necessity of inducing positivity in patients, make them understand that the treatment phase is temporary and that they can live normally. It is paramount that the entire society understands this, supports patients and does not de-motivate them by informing them of their life expectancy.
Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?
I did not try any other medication or therapies.
How did you mentally/emotionally cope with your condition?
I cried bitterly when I got to know what was written in the biopsy report. Most of my family knew it but thankfully did not inform me before surgery. I cried for 3 hours. My mother told me that God is there and he would support me. I somehow stopped crying after that. We had planned to go to a Thiruchendur Temple and it got cancelled due to my surgery. So my parents started taking me to Ulsoor Subramaniya Swamy Devasthana every weekend. I cried there to the Lord God Muruga!
Basically I am not a courageous person (I have willpower though), and am really not sure how I got the courage to withstand my situation and face treatment.
Did you see a counselor for support? Were you offered counseling by your doctor?
No. My Neuro-surgeon was there to counsel. He asked me to say ‘I am alright’ to myself 100 times when I woke up and 100 times before I went to sleep. He asked me not to browse on my ailment as that would mis-guide me.
How has your family supported you? Who has been your biggest support/companion through it all?
My parents and sister were there to support me throughout. Even though, my sister was employed in New Delhi, she took a month’s leave during my surgery and stayed with me. She came again before my chemotherapy.
My relatives also came more frequently to spend time with me. Believe me, they were all here at Manipal Hospitals, on October 14th 2011, during my surgery. Some of our distant relatives also came and visited me, despite their old age. I am blessed to have such good relatives.
How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?
My friends and colleagues, including managers visited me at the hospital and also at home. I was on sick leave and was able to communicate the diagnosis only to my manager.
A close friend of mine, Kavita made it a point to visit me with her husband even though she was expecting and lived far away.
How has your diagnosis changed your life perspectives and ambitions?
The diagnosis made me bold. My ambitions stay intact.
