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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Shyam Chotai

 Shyam Chotai, an associate director at HSBC Private Banking, was diagnosed with a brain tumour, later identified as a grade 2 astrocytoma, in May 2021, after suffering with what he now knows to be epileptic seizures. The 33-year-old, who was born and raised in Leicester and now lives in East London, has undergone a biopsy, an awake craniotomy, radiotherapy and chemotherapy, and is now looking forward to getting married next year and continuing to help other brain tumour patients.

Shyam tells his story …

I’ve been living in London now for more than eight years, but I previously lived in Leicester. I graduated from the University of Loughborough in 2012 having studied for my degree whilst working with my parents to build a small independent snack business, Khushi Foods. In 2014, I had a fantastic opportunity to go and work for HSBC, which is when I decided to move to London. I was part of a rotation programme and as such spent 18 months working in London and six months in Hong Kong. This allowed me to understand a lot about Asian culture and how it ties in globally from business and humankind perspectives

I met my partner, Celia, who is a fellow foodie, in 2016 and spent four amazing years travelling and dining out with her, and learning more about her Chinese culture, before deciding to propose in early 2020. However, like it did for many, COVID-19 got in my way by placing restrictions on travel and eating out. After three failed attempts at proposing during the pandemic, on 20 December 2020 I finally managed it. Celia said ‘yes’ and it is a moment I will remember for the rest of my life. Then, in mid-January, I had my first seizure.

I’d spent much of my spare time the previous year sitting on the sofa, eating a lot of food. As the world slowly started opening up in January 2021, I decided to try and lose a bit of weight. I began following a hardcore diet and exercise plan and, according to my Fitbit, I was burning about 3,500 calories a day whilst consuming no more than 1,500. Due to this large calorie deficit, I lost about 5kg in two weeks.

“When I got my first seizure, I assumed it was my body telling me I’d been overdoing it with my new diet and exercise regime.”

I was on a Zoom call speaking to a colleague about a deal we were working on when it happened. He was speaking English but I couldn’t understand a word he was saying. I felt like I wasn’t even in the room at the time. I had a few similar episodes, so decided to follow a normal but healthy diet into February. Unfortunately, the seizures continued. 

“Celia was concerned and a friend of mine thought I might be suffering from some kind of epilepsy, so I went to see a neurologist.”

I have access to private healthcare through my job with HSBC and, as part of the company’s care for well-being programme, I get bi-annual health checks through Bupa. Having gone for a check-up, I found out I was in much better shape than I had been previously, with a lower heart rate and better overall fitness. However, the specialists had no idea why I was getting ‘seizures’. Following the results of my health check, and the advice of my friend and partner, I went to see a neurologist a couple of weeks later. She also suspected I might have epilepsy, but the MRI she organised showed a different story. I was sent for another scan, this time with contrast dye, and a few other tests, and in May 2021 it was confirmed I had a brain tumour.

“I was in absolute shock as I was told it appeared I had a grade 2 astrocytoma.”

Celia and my family members were in tears and I was left unsure if I was going to survive. I had the option of continuing to use Bupa for the tests, scans and consultations I would need, but decided to utilise the NHS instead. I knew this would delay things but I was okay with that because it meant I could make the most of life for a bit longer. I spent that time enjoying London with my friends, and eating out and going away with Celia. We celebrated her birthday in Gleneagles, Scotland, and we went on holiday to Gibraltar before my biopsy in October 2021, which I ended up having privately at the Harley Street Clinic, in London.

“Having a biopsy scared me because there are so many things that can go wrong.”

The doctors have to warn you about all the possibilities, which include bleeding, brain swelling and stroke, and it’s easy to take all these to heart, but in the end I knew I needed it to be sure of what type of brain tumour I had and how best to treat it. Getting my results took a while because there was uncertainty over the grade of my tumour, which required more tests. Finally, in December 2021 it was confirmed as a grade 2 astrocytoma, IDH mutated, based on the sample taken.

“My tumour is located on my left frontal lobe and is large, measuring more than a quarter of the left side of my brain at the time of diagnosis.”

I was given three options moving forward. The first was to do nothing and monitor it for potential growth with regular MRI scans; the second was to reduce its size and stop it from growing by killing off as many of its cells as possible using radiotherapy and chemotherapy; the third was to operate to remove as much of the tumour as possible, and follow up with radiotherapy and chemotherapy, but I was advised that, due to its location, surgeons wouldn’t be able to debulk more than 50-70%.

“I struggled to make up my mind about the best course of action and decided to travel abroad for a second opinion.”

I had another MRI and enjoyed what I thought could be one of my last holidays whilst awaiting the results. The doctor there advised me, unequivocally, to have the surgery, which helped to make my mind up. So too did hearing that The Wanted singer, Tom Parker, for whom surgery was not an option, had passed away from his brain tumour. I was also put in touch with someone, through a colleague, who had been diagnosed with a brain tumour 15 years earlier. Meeting him and finding out that he got married and had children following his surgery made me feel more confident about my decision. When I learned that my neurosurgeon, Mr Ranjeev Bhangoo, had also performed his surgery, I felt even more assured about going ahead with my operation.

Having decided to enjoy the time I had leading up to my operation, Celia and I took a trip to Disneyland Paris. Unfortunately, I ended up catching a bug and getting sick there, which made things a bit challenging, but I was glad to have fit in one more holiday before ‘the big day’. With Celia working long hours in banking and me being warned of a 10% chance of permanent disability, and very likely chance of temporary physical disabilities, I had to ensure someone was around to look after me post-op. My mum who is there for me ‘no matter what’, moved from Leicester into a short-term flat near our home in London. This meant I had support in case the operation caused damage and I felt very lucky to have such an amazing mother.

Ahead of my operation, I was introduced to a speech and language therapist through HCA Healthcare, Lisa Harris. The part of the brain where my tumour is located is responsible for speech and understanding, and her role, from day one, was to ensure I could continue speaking and understand speech after surgery. Losing the ability to do either would have made it impossible to do my job and, more importantly, would have had huge consequences in all other aspects of my life. Lisa did virtual pre-op tests with me and ended up being one of the most important people during my surgery on 16 May 2022.

My operation took the form of an awake craniotomy, so I was ‘woken up’ from a general anaesthetic after my neurosurgeon had gained access to my brain. I saw Lisa and an anaesthetist in front of me and could hear my neurosurgeon and his team behind. I was then asked to count from one to 10 in English and I’m not sure why, but I also did this in French, Mandarin and my mother tongue, Gujarati. As the debulking process got underway, Lisa showed me pictures of things to identify on an iPad and asked me simple questions and basic maths. As well as being a friendly face and ensuring I could talk and understand throughout my operation, she enabled my neurosurgeon to continue de-bulking my tumour based on my responses to her questions.

“About an hour into my resection, I stopped being able to answer almost any questions.”

I repeated the word ‘water’ over and over and, although I shouldn’t have had anything to drink during the surgery, I was drip-fed a little from a cardboard syringe. Then, following feedback from Lisa and the team, my surgeon made the decision to stop my operation. He had removed 50% of my tumour, which was at the lower end of what he’d been aiming for, but still a significant reduction. Amazingly, I had gone into theatre at 8am, and, by 4pm, was taking a post-op selfie. I wasn’t able to go to the bathroom on my own that first day but I was able to eat and hold conversations with my loved ones, which was a relief for everyone. Celia visited me that evening and was in ‘shock and awe’ at how chatty I was after having had brain surgery just hours earlier.

After one night in ICU, I asked the nurses to move me to a private room on a general ward. One of the perks of private healthcare, which I believe should be used where possible to help ease the burden on the NHS, is that you get treated very well. Despite having great food and my own room to recover in, I was very keen to go home as soon as possible to spend time with my mum and Celia. Due to my ability to fight my pain and post-surgery side effects, I was able to do this two nights later and was pleased to be able to enjoy a home-cooked meal prepared by two of the most important women in my life. Four days after my operation, I was able to walk, talk and use the toilet and shower alone, which helped me feel really positive about being able to continue fighting during the horrible journey I knew lay ahead.   

“Undergoing treatment for my brain tumour has felt like I’ve fought non-stop battles.”

There have been very challenging times, but I’ve kept positive throughout by celebrating the small victories along the way, and I felt like I won that first fight after making it through my awake craniotomy. Lisa gave me the idea to use the app Elevate during my recovery. It tests your IQ with maths, word and memory puzzles and I did it every day, along with continuing to learn Mandarin, which I’d started during the pandemic. These, and watching series on Netflix, helped distract me from the pain I experienced, which was a severe issue during my early recovery.

I continued having seizures, but I didn’t let them stop me from doing things. During the Queen’s Jubilee celebrations on 2 June, I went out in London and had to come home early after suffering a seizure. However, I didn’t regret going out because I’d managed a walk and had a meal with Celia and our friends. It’s outings like this that have kept me fighting throughout my treatment. On 11 June, Celia and I celebrated our sixth anniversary with a nice brunch and afternoon tea, and that felt like another small win for me in this horrible battle.

“In mid-July, I started six weeks of radiotherapy.”

I found making the mask a bit strange but I didn’t feel much from the initial sessions. I knew something was going into my head but I wasn’t in any pain. I was happy to have my mum accompany me to many of my daily sessions. We took nice walks in the sun from Moorgate Station to the HCA facility I was being treated at, London Bridge Hospital, and she often prepared lunch for us after. Sometimes I’d take her to a restaurant she’d never been to which made us both happy.

The walks helped to make the days more fun and, on one occasion, we even visited one of my great aunts, who we hadn’t seen in years. Sadly she passed away whilst I was undergoing chemotherapy. I also had visits from some of my relatives from Mauritius and a very close friend of mine who lives in Canada. He took 10 days away from his executive business life to take me to radiotherapy whilst he was in London. These were great diversions from negative thoughts and pushed me to keep fighting through treatment.

“My last two weeks of radiotherapy were particularly challenging, with me experiencing fatigue, hair loss and increasingly frequent seizures.”

I tried to keep active as much as possible leading up to my last session on 18 August 2022, but there were days I just had to rest. To help control my seizures, I was given the steroid dexamethasone, which wasn’t easy on me because it caused severe heartburn. I found out through a relative a few weeks later that drinking coconut water helps with this, and it is something I still use today.

The next stage of my treatment was chemotherapy, which got underway at the end of October. I was on a PCV regimen which involved combining three types of drugs, one that was administered intravenously and two orally. The list of potential risks was enormous and I found it really daunting. Being a foodie, I also didn’t like being told I couldn’t eat a lot of things, including tofu which makes life as a vegetarian very difficult. The constant worry and nasty side effects associated with this led to me feeling depressed after a couple of rounds. 

“I found myself worrying over the smallest things, like home safety detectors  going off when they just needed replacing.”

Of my three battles, surgery, radiotherapy and chemotherapy, chemo was by far my most challenging. It brought lots of side effects and different ones at different times, which I couldn’t control and made it difficult to plan anything. I hadn’t considered talking to anyone until a nurse, who was concerned about my level of anxiety, suggested I saw an anxiety specialist. Doing this made such a difference.

“Every round of chemo got harder, but I took motivation from seeing the positive effects on my MRI scans and in my reduced epilepsy symptoms."

I experienced nausea throughout and, during separate rounds, suffered from hives and neuropathy, which, at one point, made my whole body feel like it was sunburnt. However, I took the small wins where I could. As well as going to Portugal after my third round, I went swimming with friends and even went into the office to meet members of senior management who had supported me throughout my treatment. I shared my side effects with my doctors and they adjusted my chemo regime accordingly. By my fifth round I was only taking two of the drugs I started on, and by my sixth round, which took place on 7 June, I was down to just one. Even so, that final round hit me with a big punch and I ended up being admitted to hospital for a day with severe vomiting.

The reality for me is that my tumour will very likely always be with me, but this two-year journey has given me a new perspective on life which makes me want to do what I can to help others. As well as going public with my brain tumour in order to help connect with others going through a similar ordeal, I’ve been fundraising for charities, including Brain Tumour Research, which I hope to continue doing for the rest of my life.

“Health and diet is much more of a focus for me now, as is making the most of my life and the people in it as I look forward to my next ‘big day’, my wedding.”

Shyam Chotai
April 2023 

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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