A glioblastoma diagnosis in India: a survivor's journey

Surgery · 6 min read

The Awake Craniotomy

Because of the location of my tumour in the right parietal lobe, I needed to be awake during my surgery, the surgeon had to be very careful that my speech and motor function wouldn't get impacted during the resection and being awake would help that.

I started by joking with my family, I've seen it on a TV show - I knew what it is, to some extent at least, and the craziness to expect. I was to remain Nil by mouth for about 8 hours before the surgery but due to delays with the schedule, that ended up becoming 15 hours. After they wheeled me into the OT, they removed my top and covered me with a hospital bedsheet. I started shivering uncontrollably - the doctors immediately put a hot blanket underneath me and I became fine. A section of my hair where the incision was to be made was shaved off. I was injected with local anaesthesia injections at 8-9 spots around my forehead so that when they drilled into my skull, I'd feel the pressure but not much pain. I was to lie on my left side throughout and remain alert.

I was told that intermittently, the surgeon would ask me to perform certain movements to check on my motor function. I'd need to open and close my left fist several times and move my left foot up and down, then relax. Test and release…on repeat.

For the next 4 odd hours, I heard drilling, scraping and flushing noises and remained absolutely still, complying diligently with the instructions on movement. The anaesthesiologist was very kind and kept egging me on, telling me I was doing really well. I'd started to get exhausted and my left hip started aching. After bearing it for a while, I asked if I could just move an inch and readjust, the team paused for a few seconds and let me. A little while later, they asked me again if I wanted to take a break, but I was just keen on getting the tumour out as soon as possible so I pushed forward.

Then finally, after what felt like a very long time, I felt acute pain and tried to ask the anaesthesiologist by my side, how much longer. With all the loud noises, it took me several attempts before I was able to gather all my energy to finally be audible to her. I told them, I was fine, but just needed an estimate on how much longer did they expect to finish in. She said it was the last mile, just another 15-20 minutes. That was enough for me to pull myself through that last stretch with renewed vigour on my movements. It ended soon after and I was told the surgery went well. I'd been told earlier on that they'd be forced to stop if I had a seizure during the surgery and may even have some loss in motor function if they needed to resect certain parts - so I was extremely happy they could complete the surgery without any challenges.

It was a challenging night in the ICU. I had an intense headache after the surgery due to the inflammation. While I was given a painkiller, it didn't help much, what would help the doctors told me was the diuretic they started me on. It would make me pee every hour so as to release the pressure build-up in the brain. I was told I had to make do with using a diaper or a bed pan to relieve myself, I chose the latter. A short visit from my husband was enough to get me through the night. Thankfully, a few hours later, I was stable enough to be moved back to the room. While under observation the next day, I experienced some pain in looking towards my left side and also opening my mouth wide. My surgeon mentioned this was normal since my right brain had been operated upon and the anti-inflammatory meds would help. I was out of the hospital in 5 days end-to-end and I was fortunate for that.

For almost a month after, I found it hard to sleep properly, I'd keep waking up at odd times and then was unable to fall back to sleep. I realised, I needed to let out the gory details of the surgery to be able to let go. A session with my therapist helped and she told me to pen it all down, since I just didn't feel like talking about those details with my family, it felt unnecessary for them at that point. This, combined with a natural herb I was suggested by my nutritionist before sleeping, and I finally started sleeping again.

Doctors · 4 min read

My medical team that gave me tangible hope

In the early days post diagnosis, we did have some rough experiences - one where a doctor kept sending me out of the room to discuss 'difficult' matters with my family - apparently, a 30 year old woman was incapable of dealing with a diagnosis of a terminal disease. Another instance which nearly broke me - where I was asked, what took me so long to figure this out and why I didn't get myself checked out sooner. Of course I cried my heart out at the time, a mix of anger & sadness - but then I knew I had to pull myself together and put it all behind me.

These experiences also thankfully helped me realise how important every member of my medical team would be. I made a decision to take control of my course of treatment and I was lucky to be able to make that choice. My family researched thoroughly - we asked doctors multiple questions, sought second opinions and built conviction before we moved forward. I realised I needed a holistic approach, including not just standard of care, but also physical, mental & emotional wellbeing and a medical team that resonated with that.

My oncologist was exceptionally positive. I recall the moment I knew he would be my primary doctor - in our first conversation itself, he mentioned that based on the location of my tumour, it may eventually spread to the frontal lobe and I may start to speak random things or forget small things - but he told me those were going to be speed bumps along the road, nothing I couldn't cross over. My husband and I could work together to develop cues and signals to tell me when it was happening and I could work and train on fixing it. That approach made me feel incredibly empowered - I was not being told all would go downhill from there, instead, it was simply stating, whatever obstacle may come, we will find a solution together.

It was not a logistically easy choice to make, my oncologist was based in Delhi. While my parents lived there and it was of course my family home, my own home was Bangalore - my husband and I lived and worked there. It was challenging to travel in between treatment, but I felt quite strongly that this decision had to be prioritised. That deep trust in my doctor was critical to get me through. While he was exceptionally busy like most good doctors in our country, he was also unbelievably patient. He would explain the logic behind each treatment choice, possible risks in experimental therapies, at the same time not shying away from them, keeping check on my overall wellbeing, and all throughout, actually engaging with my family and me, answering all our questions.

Other doctors in my team shared a similar energy. My secondary oncologist in London who had more than 20 years of experience with brain tumours approached matters similarly, advising us to just act based on my situation in the present. He also engaged with us and discussed what actions we could explore in case there was a recurrence. In fact, even with my nutritionist, things felt very real. In one of my initial conversations with her, I'd asked if she had any GBM patients who'd lived beyond a couple of years, and she told me she'd had at least a couple, and that too much older people - so there was no need to focus on the dire statistical prognosis. While they were all positive, there was no irrational exuberance and it was only a very pragmatic approach of addressing every challenge that surfaced in the best possible manner, one step at a time. These were the people who truly gave me enough logic and rationale to be able to hold on to hope in a more tangible manner.

Nutrition · 4 min read

Eating clean

I had been recommended by some family friends to take help from a nutritionist alongside my standard of care treatment. After the dramatic difference in how I felt on Day 1 vs Day 2 of my six week radiation therapy, I realized very quickly the power my diet would hold - in both my well-being, as well as my recovery. While I felt excessively fatigued on Day 1, I was visibly better on Day 2 once I started my new food plan. My entire family could spot a difference without my mentioning anything at all.

My nutritionist designed a detailed plan for me which involved a gluten free, dairy free and sugar free diet. I sourced my food mostly from organic, safe and trusted sources. I switched all plastic containers for glass and only cooked in steel or cast iron vessels. My mother helped me tremendously in this pursuit. My diet during treatment was very detailed with several additional food supplements to fight the cancer cells and also strengthen my immune system. The nutritionist support was an investment, but not prohibitively expensive. All throughout, I kept my Oncologist in the know as well, just to be sure that nothing I consumed would interfere with my medication.

A few principles guided how I eat during treatment, and they still do today.

Keeping inflammation down. An anti-inflammatory environment matters for the cells in the body to stay healthy. While I always had plenty of vegetables and fruit, I cut out wheat, refined flour & sugar, dairy and processed foods entirely - which are all inflammatory in nature. For my carbohydrate intake, I switched to only millet-based rotis or unpolished, low glycemic, local varieties of rice. I ensured consumption of colourful vegetables like leafy greens, beetroot, carrots, bell peppers, that are known for their anti-inflammatory compounds, along with cruciferous vegetables like cauliflower and broccoli which are often recommended for their protective compounds. For fruit, I ate a lot of different types of berries - strawberries, blueberries, dried cranberries along with lots of pomegranate, kiwi, apricots, jamun, papaya etc. I consumed healthy fats from nuts, seeds, avocados, A2 ghee and only used wood-pressed or cold-pressed, unrefined oils for cooking.

Protecting protein, muscle & gut health. Keeping my protein levels up mattered both to maintain my energy levels and limit loss of muscle mass during treatment. I ensured I ate both plant-based options like tofu, mushroom, beans as well as lean meat options such as chicken and fish. To strengthen my gut health, I ensured a high fibre diet I also included several foods to strengthen my gut health including fermented millets/rice, idlis & dosa, kimchi, coconut yogurt etc.

Eating without guilt. The most important advice I got from both my Oncologist, as well as my nutritionist, was how I felt about what I ate. While I kept a strict check most of the time, indulgences once in a while wouldn't harm me and I should never think about it with guilt. It made such a difference to how I lived and took away the fear that a couple of bites of a dessert once in a while, a slice of pizza would undo everything.

Strength · 5 min read

Losing strength & rebuilding

My radio-chemotherapy treatment started within a month of my surgery and I decided to try my best to stay active throughout those 6 weeks with regular walking, meeting my daily target of around 10k steps almost everyday. My doctors had no concerns on me remaining active. I had to be careful about staying away from infections so I walked within the house itself - from one end to the other, sometimes circling rooms. My family, watching me, would find it amusing sometimes seeing me pacing like that, but it became that one thing under my control even when so much was not. It also made me feel pumped during a period that was very mundane, with hospital visits 5 times a week.

I didn't anticipate how different things would become once my adjuvant chemotherapy began a month later. I could no longer demonstrate similar control over my body. I did 13 chemo cycles, spread over 15 months. Chemo days were challenging, every subsequent day of each cycle got harder, and I would feel my energy deplete completely. While in the first couple of days of the cycle I would usually be able to work from home and move around a little, for the next few, I'd end up having to rest for longer durations. Thankfully, with the food plan suggested by my nutritionist, I would feel myself recovering within 3-4 days of the cycle ending and I made the most of those non-chemo days. I would try to do some form of light exercise to keep my body moving and improve blood circulation. I had always enjoyed running, so on days I felt stronger, I'd go for a run instead of just the walks.

I was able to manage this routine for the first 6 months of chemo. Then unfortunately, in Sept'24, during one of my runs, I tripped over a loose tile and had a hairline fracture in my left hand. With the continued chemo, my body had become much weaker and took several extra weeks for a full recovery. I was of course immensely frustrated, but my doctors reminded me that it could've happened to anyone and I shouldn't blame myself. While I didn't really regret it since running gave me the joy of freedom, the long recovery made me choose to avoid it till after my chemo ended - I didn't want to take a chance again. For the next few months, I had to stick to just my walking targets instead.

Our travel for vaccine treatment had also been significant in parallel with the Chemo. With every passing month, I became acutely aware of just how weak my muscles were getting. I could barely lift my suitcases and shove them in the overhead bins on planes, I had to inevitably ask for help. While my folks would tell me I had to cut myself slack and I would agree at times, it would just be extremely frustrating given how independent I had previously been.

Once my chemo finally ended in May'25 and I had recovered for a couple of months thereafter, I decided to start a holistic training program which would help me not just regain the muscle mass I'd lost, but also build back my stamina. Under oversight of a trainer, I slowly started with some resistance band exercises. It would often give me muscle pain and after advice from a physiotherapist, I realised that it was a chicken and egg scenario. I had to remain patient and keep at it. I started with 3 days a week - some strength training exercises, yoga and some running, and finally got to a point when I was able to workout almost 6 days every week. I hoped the results would gradually start yielding and after 6 months of consistently showing up, they finally did. I could climb up two flights of stairs with my luggage, without any help, my aches and muscle stiffness that used to surface every other day, dramatically reduced. It felt so good to finally reclaim some of my strength - felt like I'd finally made it.

Mindset · 3 min read

Focusing on my mental well being

While I couldn't really underplay the gravity of the situation, I knew I couldn't live in fear of the prognosis. I had to remain singularly focused on living in the present and equipping myself with tools that would help me in this journey. Most importantly, I had to control my stress levels which I'd always struggled with, and my tendency to overthink every situation. That was clearly one part of me that I no longer wanted in my new life.

While I found meditation challenging to start with, I decided to start doing regular breathing exercises that would help reduce my anxiety and calm my mind. There were exercises that would immediately bring down my stress, some that would calm my anxious state of mind in a matter of a few minutes, and some that helped me fall asleep. I started to practice these at different points in the day, multiple times. What kept me going was that I saw the tangible, positive results it had on my sleep quality and how I would feel and react in different situations.

There were several challenging days of course, but gradually, over a two year period of practice, I saw significant improvement. I was even able to meditate for a couple of minutes. My husband was able to see a marked difference as well, I was much calmer, and would not spiral like I used to about small things. It took a significant amount of effort to get to even this point, possibly the hardest part - and I still have a long way to go.

The people · 4 min read

My army that stood behind

The diagnosis was definitely devastating to start with - I was told I had 12-18 months to live. I'd gotten married less than a year ago, had gotten to a point in my career where all the years of working incredibly hard had finally started to pay off. I was absolutely unwilling to accept that fate - I was just 30, and I had so much more to do and see in life. I decided that I wouldn't let the statistics dictate my expiry date and would just focus on everything I could to live well every day. Of course there were times I would break down, and I allowed myself those moments of vulnerability, but with the unwavering support of my family & friends, I was able to pick myself right back up. In fact we all took turns having our rough days - whether it was my husband, parents or other family members - we had to process it in our own ways, but we gave each other strength in those overwhelming moments. I recall, right from the beginning, from the surgery day onwards, all through 6 weeks of radiation, I was kept busy by all my loved ones showing up for me. Whether it was board games or card game nights or video calls with friends & family. In fact, after I completed my radiation treatment, my closest school friends came down to spend a few days with me, filled with laughter and silliness.

Our lives underwent a complete overhaul. We were travelling across cities for different treatments but we were lucky to have a home almost everywhere we went. With my in laws in Bombay, my parents in Delhi, our friends in Bangalore, we were incredibly lucky to be comforted every step of the way. When we had to go to London to access my Optune treatment, and we had no idea how long it would take for me to get set up, my cousin sister and her family opened up their home to us and welcomed us with such warmth that I just started to feel things would work out.

After about 6 months of feeling a little all over the place, my husband and I decided we needed to make Bangalore our base again, so we could have some semblance of stability in our lives. While I'd been working remotely ever since 3 months of surgery, I started going to the office. I was incredibly lucky with just how flexible my work place had been. My boss and mentor had stood behind me since the day I'd been diagnosed and let me back at work with the only condition that I'd respect my own boundaries and not take undue stress.

We knew the multitude of treatments would continue, but just being back at home, in our own warm space, we felt incredibly reassured. In between chemo cycles and all the travel, we spent time with our friends, went for plays and music performances, explored new restaurants once in a while - basically doing everything that made us feel more like ourselves. My mother was a rock for me throughout, stretching herself and travelling with me for treatments and tagging my husband out to ensure he got some space for himself as well. My dad took days off from work, just to be around me. Gradually, we found our rhythm again. My husband was my calming centre, he kept things light even on the most draining and intense days. I realised only then just how lucky I was to have someone around who held the energy that I wanted to hold in my future and not have those who held fear and stress.