Melvin George, 30 shares his experience of getting a diagnosis of Astrocytoma, a brain tumour, navigating the care options, the side effects of the cancer and the treatment, how the experience affected him personally and how faith was the bedrock of his recovery. Plus work related challenges.
Shocking Diagnosis
July 11th 2017. I was on my bed in my dorm room and as I woke up, I saw the ceiling vibrating vigorously. I think that was my first episode of seizure but wasn’t sure what it was at that moment. I had never such a experience before. I was 26 years old when this happened. I thought my seizure was related to the headaches which I used to experience when my hair used to grow long so I decided to get my hair cut in the morning which didn't help. I continued to have really severe headache. The intensity of that headache was like nothing I had had till that date. So, then I showed it to my doctor at Occupational Health Center (OHC), who was on campus. He gave me medicine for a couple of days but the headache did not subside so I was referred to Narayana Hospital where I met a Neurologist and she suspected migraine. However, since there was no definitive diagnosis, she prescribed various tests. All my blood reports were okay but MRI of the brain showed that there was a 4.5 x 5.3 x 3.2 centimeter tumour.
हिंदी में पढ़ें: ब्रेन ट्यूमर होने के बाद मेरी पहली प्राथमिकता मेरा स्वास्थ्य है
That was quite a shock! The following day, I went back to Narayana and showed it to a Neurosurgeon who said that we'll have to do a surgery. I shared the news with my parents because I know as a parent they are always concerned. We had another relative who had undergone a similar brain tumour surgery for Oligodendroglioma who referred to a doctor in Bombay and since my parents live there I got on the next flight and came home right away. The day after I landed, I met the doctor and surgery was scheduled for the following day with Dr BK Mishra, one of the topmost doctors in Bombay. 24th of July was my surgery and they did a biopsy after surgery. That's when they said it's between grade two and grade three; intermediate stage.
Figuring out treatment options
A month after the surgery, the doctor wanted to explore the options with Radiation and Chemotherapy. I had an option to go with 3D CRT or IMRT, but the doctor we met did not explain the difference well. We felt uncomfortable with him. As a patient, we want to know more about our options. I have seen that doctors feel their integrity is being doubted, if you ask questions. But that's not the case. We would want to know what exactly we are going through and we trust the doctor’s knowledge. But often they make it seem like we have committing the world's biggest sin by questioning them and are hurting their ego. So, I started reaching out to my own folks, cousins who are doctors and started connecting with them and learning about what I actually have. I could have open discussions with them on what I have read. Unfortunately, I cannot expect this from the treating doctor because their time is too valuable, and they have too many patients to cater to. I understand the doctor patient ratio here in India.
Finally, I met Dr Anil D’Cruz at Tata Memorial Hospital who was kind enough to explain things to me amidst his busy schedule. He explained why it was better to go with a certain type of radiation and right then I was absolutely comfortable with him. There was another Dr. Johnny who was so calm, patient and helped us navigate through the initial stages of radiation because along with 31 sessions of radiation I had to take Chemo in parallel for about 52 days.
Challenges during the treatment
It was not easy because many days, the radiation machine would stop working and I would be waiting all day while I was fasting and then told that it’s cancelled and pushed to the next day. This happened a few times which was quite frustrating for all the patients there. Since the volume of patients is so high, they should take a look at getting another additional radiation machine. The challenge is, you have to stay four hours on fast before taking the chemo and one hour again for my radiation. So, I have had my breakfast at eight at home and I’m waiting till three or four, then I get a call that the machine isn’t working right so all patients are delayed by which its late evening and I’m super hungry and frustrated. However, the doctors who took care of me there were very sincere and caring. I still go to Tata every six months for my checkup.
During this time, all of my relatives kept recommending foods and that has got no limit to it. Also, no right limit to what my parents can follow. Every morning, it became a mandate that I have to have the ABC (apple/beetroot/carrot) juice and by the end of the 30th day, I became so averse to it that I couldn't take the smell of carrot.
Side effects of Chemo and Radiation
In the first week of the chemo itself, I ran my hand over my head to find a chuck full of hair falling out. That was a difficult and personal moment for me but that's something I really commend my parents on because to see that must have been even more difficult for them. I'm not a person who gives any importance to looks but then I started wearing hats. I have always been fascinated by this red hat concept so that was what I wore which has now become my style statement.
A month after radiation, adjunct chemo started with a jump in dosage from 170 mg to 350mg. That huge jump caused weight loss, and low WBCs. My parents were on one side giving me everything nutritional to compliment whatever I was losing out on and on the other side the chemo was ensuring that whatever my parents were doing was drained, so it was like a nice match that was happening inside my body. By god's grace, healing did come through.
Long term effects
Focus, memory and concentration all got affected and still persists. I was told I will have short-term memory issues as well. I downloaded memory apps and have started homeopathy which seems to help. I still get headaches when I need to focus a lot. That is one major reason I cut down on my stress. Mood wise I had severe anger issues. My temper would go off from 0 to 100 in 0.1 second and not with everyone. I could feel those anger cells actually hitting my head. It did not happen anywhere else only inside the home. Sometimes it's just heartbreak/ heaviness and you're crying. It does not happen all together at once but at random times. I believe that the homeopathy medications are helping me. The anger outburst is probably now down to once in two or three months.
I was also referred to a Psychologist to address depression which I was not very interested. I did not see a counselor, but my church folks, friends and family helped me a lot. They ensured I stayed happy and stress-free because that's when your body will start responding positively. Multiple times, I’ve had this depressed feeling and I immediately would try to recollect that this is a side effect you need to get through. The Church Prayer Meetings and Youth Meetings used to help me realize who I am. This realization made me push myself to somehow to do something else. I started watching Sermons and stand-up comedy and fell in love with them. Then I started reading a lot, growing more spiritually, reading the bible. I was trying to understand the purpose of life which kept me motivated and has been my driving force.
I have not faced any imbalance issues after that. I was also put on anti-convulsion pills, but it drains you half the time. These medications are given for a set duration after surgery even though I did not have a history or episode of epilepsy.
Returning to work
I thought of moving back to Bangalore during cancer treatment and returning to my job because It has been financially draining. I was always active in sports hence never thought of having an extensive health insurance. It did cover about 40% of the cost but rest had to be pulled in from home itself. At that point in time, Biocon (especially my boss) was really supportive. I was already working with them for three months directly after my MBA. Being confident that I can resume work, with a heavy heart my parents let me go back to Bangalore. I wanted to show how grateful and healed I was, but 3 months down the line, my body started giving up. I realized it's not working out and I need to give time to my body and if I don't, there's may be long-term consequences. My company supported me by allowing me to join back after completing my treatment. Also staying alone was not easy, I really started respecting all the house makers or women who are managing their homes.
I came back home and finished my treatment in December 2018 and then went back to work in January 2019.
On talking about cancer during job interviews
Whenever I give job interviews, I make it a point to reveal my cancer history, because a lot of organizations have these medical tests for candidates, and I didn’t want to lie. Many organizations are quite doubtful which is not surprising. However, there are also organizations which are more accepting. Sadly ,my experience in some organizations has been that once I share my cancer history the interview style and direction changes. It either appears empathetic but they have already made up their mind that they don't want to take that risk with you. Second approach is that they don't want to show that they are empathetic, and the interview is extremely grilling. They're trying to make you feel that it's not going to be easy, so you know they want you to stay away. The focus of whether I am capable of working in the respective portfolio then becomes irrelevant to them. The difference of approach between Indian organizations and Multinationals is quite stark. I think the Indian organizations need to adapt and be more accepting.
My Priority Going Forward
My first priority is my health and my body now. My surgeon had told us that only 50% of the tumour had been removed since it was deeply integrated and that if they tried, it could have caused paralysis. Every 6 months, I have to do an MRI to check on it. I ensure that I get a CD to study my MRI so to whatever extent possible, I try to learn what it says and correlate with what doctors are saying. In terms of size, it hasn't reduced. I am now looking to start a support group for patients and survivors like me.
