Dr Raghbir Singh
Former amateur runner turned cyclist, Dr Raghbir from Burnham, Slough, was diagnosed with an oligodendroglioma after suffering a seizure out of the blue whilst running in 2007. He had surgery the following year but, after a decade of clear scans, he suffered a relapse in 2018. The father of three had a second operation, followed by radiotherapy and chemotherapy. After completing a 100-mile cycle ride, Raghbir is sharing his story of what it’s like to live with a brain tumour.
Raghbir tells his story…
Until my brain tumour diagnosis in 2007, I was more of a runner than a cyclist but that changed after my first brain surgery in 2008. I was diagnosed with the disease totally out of the blue.
I completed a PhD in Computer Science before a career in investment banking. I was working in London at the time of my diagnosis. During lunchtimes when I was in the office, a few colleagues and I would run around Regent’s Park and Primrose Hill. On this day I was training hill sprints; 13 times up and down Primrose Hill. On the run, colleagues noticed I wasn’t running how I normally did. I carried on running into some bushes and didn’t hear the calls of my fellow runners.
I was vacant but still able to move my body.
The next thing I remember was waking up in St Mary’s Hospital in North West London, greeted by the smiling and kind face of a neurologist who delivered the devastating news that I had a lesion on my brain which was likely to be a low-grade glioma This came as a complete shock because I had experienced no symptoms beforehand. Other than being fearsome, I didn’t know much about what it meant to have a brain tumour. The words often strike terror in people, and I was deeply concerned about the implications. No-one in my family had ever been diagnosed with the disease, it was completely new to me.
I was told I had suffered a complex partial seizure (CPS) with no recollection of how I ended up in hospital.
My memory of that whole day is hazy.
I was referred to the National Hospital at Queen Square, London where I was told that the brain tumour was a ticking time bomb and needed to be removed as soon as possible. In the meantime, I was given anti-seizure medication which caused severe side effects to my skin, so I was taken off them.
When it came to surgery, I didn’t take the decision lightly. I was told about risks of the operation and knew that the procedure would involve the removal of a large amount of hair from my head. As a baptised Sikh I was torn between my commitment to keep my hair intact and the advice of my medical team that surgery would provide the best possible treatment outcome at that stage. My youngest daughter was just five months at the time, and this spurred on my decision to go ahead with the operation in April 2008. I felt that she and her two sisters deserved to grow up with a father for as long as possible.
Ten days later, I returned home with limited side effects of the operation other than experiencing nausea which eased gradually over time. My memory wasn’t as good, my day to day working memory was compromised. I’d walk away and forget where I put things, now I mentally bookmark as I go along, something I’ve learned to do.
My tumour had grown in a narrow mass which was around 12cm long on my right temporal lobe close to the visual cortex. Tests performed on the removed tumour confirmed it was a grade 2/3 oligodendroglioma.
Six or seven years went by with regular scans showing my brain tumour as stable. During this time, I was not permitted to drive due to experiencing auras which felt like Deja Vu – a past memory that came back into focus. Alternatively, as an intense feeling of foreboding and heightened expectation that something big and possibly bad was about to happen.
I switched from running to cycling as I found the repeated impact of my feet hitting the pavement wasn’t conducive to someone who had just had brain surgery.
Being unable to drive; cycling restored my sense of independence, freedom and enjoyment of nature and it is now my main source of cardiovascular exercise. I have always enjoyed the outdoors and used to take part in walking expeditions. These days I combine cycling with meditation, which I have practiced for many years and is the foundation of my faith, this has enabled me to maintain a good level of physical fitness, which I feel is vital for overall health and resilience, but equally as important for my mental and spiritual wellbeing.
After a change in one of my routine scans around 2013, I continued to be monitored until a significant enough change for further treatment.
In 2018, my tumour recurred, and I had a second operation, a decade after the first. This time my three girls were older, and I was worried I wouldn’t see them again.
I went into surgery two days after I climbed Yr Wyddfa (Snowdon) in Wales to which the staff in the hospital were taken aback. The surgeon debulked as much of the tumour as possible without causing life-changing injuries to my sight – a field eye test showed the tumour has already impacted my vision although this is minimal, and I don’t notice it myself.
It was a remarkably different experience compared to a decade earlier, with limited side effects from the procedure.
I found that I could control the post-operative pain without any pain killers, relying on meditation alone. Three days later, I left hospital and took the train home unaided, paying a visit to the Gurdwara along the way as it happened to be the same day as Diwali.
I felt so well and put that down to the grace of the Almighty, maintaining a healthy and active lifestyle as well as always maintaining a positive outlook.
Radiotherapy and chemotherapy followed, which my medical team said was to focus on the remainder of the tumour, parts of the mass that they couldn’t remove during surgery. My body coped well with radiotherapy. However, because of PCV chemo I developed neuropathy – a tingling and numbness in my hands and feet with the potential to cause permanent nerve damage.
Chemotherapy caused my immune system to become weakened, so I developed neutropenic sepsis on one occasion, a very serious complication. Fortunately, the sepsis responded well to antibiotics.
Despite knowing the possible side effects, brain tumour patients are still given such toxic treatments which is down to the lack of research into kinder treatments for patients. My consultant was great at altering my intake of specific chemotherapy drugs to maintain acceptable blood counts. This meant during the six months I was having chemo I was well enough to stay reasonably active.
During my personal research into my condition, I have learned that it is not unusual for brain tumour patients to suffer relationship breakdown; this has sadly been the case for me and my three daughters. A deadly disease can place too much additional strain on relationships.
I had a seizure in March 2024; it was the second time ever in my life and the first since my brain tumour diagnosis. My medical team were concerned that this could be a sign of my tumour regrowing, but CT and MRI scans showed no changes. I put it down to a lack of sleep and spending a long time driving, which wasn’t something I did often.
Results showed that everything is stable, and I’ll continue having a scan every six months.
Two months later at the end of May, I completed the RideLondon 100 in a time of 7 hours 30 minutes which I felt proud to achieve and I would do it again. My experience shows that you can continue doing the things that you love after a brain tumour diagnosis.
I’m grateful for the superb care I have received throughout my brain tumour journey. During my visits to hospital over the years, I’ve met people in waiting rooms and got to know their own health stories and I realise I am fortunate to be in the position I am having had the option of surgery, radiotherapy and chemo.
Sharing my story and raising money and awareness for Brain Tumour Research feels like I am giving something back.
Dr Raghbir Singh
July 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Raghbir’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure