In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Father-of-three Asmat Chaudry was diagnosed with a grade 4 glioblastoma multiforme (GBM) in April 2013 after suffering a seizure at home and losing feeling in his left side. He had been experiencing some forgetfulness in the weeks prior but was otherwise a fit and active 74-year-old. He underwent brain surgery and radiotherapy but died 15 months later, during the most sacred days of the Islamic holy month of Ramadan.
Here is Asmat’s story, as told by his daughter Farzana …
My parents have lived in Watford, Hertfordshire, all my life, having emigrated from Pakistan in the early 1960s. My father was a civil engineer and was able to take early retirement which allowed him to do lots of volunteer work within Watford. It’s been more than seven years since he died and I still get people coming up to tell me what a wonderful person he was and about all the lovely things he did for them. His passion was cricket and he played for the mighty West Herts Cricket Club but he was also passionate about the youth and, as well as mentoring young people, he gave talks about his faith for religious education classes in schools. He was a helpful, mild-mannered, easy-going man, a brilliant grandfather to my nephew and a wonderful dad to me and my two brothers. He didn’t get the chance to meet my two nieces, which is sad, but we talk about him all the time, visit his grave and we still feel his presence.
With hindsight, knowing what I do now, I think Dad’s symptoms may have started as early as February 2013, two months before he was formally diagnosed with a grade 4 glioblastoma multiforme (GBM). He had a cold and felt nauseous and dizzy, but there was a cold going around at the time and he got better and seemed perfectly fine. Then, at the beginning of March my mum, Sharifa, mentioned that Dad seemed to be getting a bit forgetful. He’d been forgetting the driving routes he’d taken routinely for decades and he forgot to pick my brother up from the airport which was really unlike him. We simply put it down to him getting older. It was a month later that he suffered his first seizure.
“The day it happened was like any ordinary day.”
I’d gone over to my parents’ house early on a Saturday afternoon as a Watford FC match was being televised – I loved watching Watford with my dad. He had gone upstairs and after a short while I heard a ‘tap tap’ from above. I didn’t think too much of it because Dad was always fixing one thing or another, but then I heard a much louder sound and went up to find him sitting on the end of the bed with his face completely drained and white. He said he was struggling to move his left side and had been on the floor banging the pipes on the radiator before managing to pull himself up onto the bed. I told him not to worry and to come down with me as lunch was ready; I thought maybe he was just a bit lightheaded, possibly from undiagnosed low blood pressure. I got him to the top of the stairs before he collapsed. He looked really confused and couldn’t raise his arms and I immediately thought he was having a stroke. I dialled 999 and the ambulance crew turned up straight away, something I am so grateful for.
Dad went from being completely okay to being blue-lighted to Watford General Hospital, which was a huge shock as he’d only been in hospital once before to have minor surgery for the removal of nasal polyps and had kept himself trim and fit, playing squash and cricket well into his late 60s. When we got there no one could confirm or deny whether he’d had a stroke, all they could tell us was that he had a swelling in his brain. When we saw him the next day he was dosed up on steroids, which they’d given him to reduce the inflammation, and he said he felt great. We were informed he would be having an MRI.
It was three weeks later we got the dreadful news that Dad had a grade 4 GBM, a tumour the size of a 50 pence piece growing in his frontal lobe. To be told that he had a brain tumour, that it was terminal and we were effectively looking at treatment options purely for palliative care, was absolutely devastating. Everyone deals with things differently and my mum’s way of dealing with my dad’s diagnosis was to turn to her faith. She’s a devout Muslim and was never without her prayer beads. I googled extensively, joined GBM chat rooms, poured over survival rates and read the prognosis; I wanted to prepare myself mentally and emotionally for what was going to happen.
“The doctors wouldn’t give us a prognosis which was quite alarming at the time but once he passed away, in July 2014, they said he did really well.”
Dad was able to have brain surgery at the National Hospital for Neurology and Neurosurgery in Queen Square, London. We thought he was just going in for a biopsy but after the surgeon had spoken to him and my brother, Anjum, he said he was going to treat Dad like a man of 60 years and operate on him to remove as much of the tumour as he could. The hours waiting for the surgery to finish were impossibly long. They were able to remove 85% of the tumour and buy him some more time, but it also exacerbated his existing short-term memory loss, which he never regained. He’d be walking in the garden and suddenly ask what had happened to him. He couldn’t remember having the surgery and would ask why there were staples in his head. We told him he’d collapsed and had a swelling, which they’d had to drain, which is why the staples were there. We wanted to protect him; he couldn’t remember his terminal diagnosis and to tell him that every time he asked would have been unspeakably cruel. This disease, the unpredictability of it, means you must think on your feet and do what you think is right.
“It was really difficult because we didn’t want him to completely lose hope, or lose the fight; we wanted him to feel he could get better.”
We kept Dad’s terminal diagnosis private – just a handful of close family friends knew. Protecting his dignity was very important to us; the location of the tumour meant personality changes and loss in verbal communication and general cognitive abilities. Sadly, not everyone is empathetic and we simply had no capacity to listen to ill-informed deceptive, valueless snake oil type treatments and insensitive comments which can be incredibly hurtful. We knew our time with him was limited and wanted to make the most of it, as well as provide him with our full attention and the best of care. In addition, Dad had no short-term memory so it felt enormously unfair to share his diagnosis publicly, when even he couldn’t remember it.
Dad went on to have radiotherapy at the University College London Hospital (UCLH)and I have no doubt this helped to prolong his life, but the downside is that, as well as killing cancer cells, it also kills all the surrounding non-cancerous cells. We cared for him at home, which was absolutely the right decision and we feel blessed that we were able to care for him. For a long time, he was what we would describe as stable, much quieter, not his usual chatty self, but able to walk unaided. He had two hospital admissions in 2013, one for a urinary tract infection and the other for a seizure, but early in the new year he suffered a marked decline and gradually his movement became more affected. My younger brother, Kashif, was seconded for work in South Africa and would come back to visit every three to four weeks; I think he noticed the deterioration more than the rest of us.
We were able to get Dad a hospital bed and when it got too difficult for him to climb stairs, we moved the bed downstairs. We got a hoist to try and keep some small movement in his body and avoid bed sores. We’re a small family but everyone had a role in looking after him; my mum would liquidise his food into a nourishing soup so he could still eat as he wasn’t able to swallow whole food, Anjum was the barber and I was the nail technician. We all read the Quran to him in Arabic. As I’m the eldest and live the closest I was overseeing everything; my priority was Mum and keeping her strong, both mentally and physically.
“One thing I would say is it doesn’t matter what your loved one looks like during their treatment, make sure you take videos of them and lots of photos of you with them; it will help you.”
During his last four months we had carers who visited him at home and they were absolutely wonderful. Perhaps it’s not until you’ve had to rely on carers that you realise what an absolute godsend they are. We had a close group of about five people, all of them were of Eastern European and African descent. They rotated shifts and some even made the effort to learn a few words of Urdu and Arabic; some days Dad would speak a few words in English and other days he would revert to his mother tongue. They saw Dad and us at our most vulnerable and truly became part of our extended family. We are humbled as a family by their dedication and support. We rely so heavily on overseas workers in this country that it’s heart-breaking to see what’s been happening to the care infrastructure since Brexit.
“Our carers were like miracle workers.”
“It’s taken me a long time to come to terms with my dad’s death.”
We were very close – I was my father’s daughter and for a long while I couldn’t talk about his diagnosis and his death without getting upset; we were all propping one another up. The passage of time helps and the ability to reflect on some of the positives to come out of this. Losing him, his diagnosis and the terminal nature of it, was the worst experience imaginable but I came out of it a stronger person, understanding what life is about, how limited it is, the importance of getting that work/life balance right and the desire to want to do more to make a difference. Dad retired in his late 50s, which gave him 25 years to follow his hobbies, his passions, to volunteer and make a positive impact to the community and town that he lived in.
His funeral was attended by around 900 people and many remarked on his character, the good, kind and generous man that he was; just listening to them helps me with my own mourning and sense of loss. People will always remember how you made them feel, long after you have passed away.
I’m also thankful for small mercies. Dad could have been at home by himself when he had his seizure but, instead, I was sitting in the room directly below him – Mum was at home as well and the ambulance arrived immediately. We feel blessed that we were able to have an extra 15 months with him, giving him unconditional love and looking after him at home with dignity and privacy. He passed away during the last 10 days of Ramadan, which Muslims consider the most auspicious as they believe the gates of hell are locked during this time.
“Muslims believe that if you die during Ramadan, you achieve ultimate salvation.”
Having had first-hand experience of brain tumours, I think it’s incredibly important to raise awareness of the disease and, as a BBC radio presenter, I will always readily use my platform to discuss and highlight the issue. It’s such an incredibly cruel illness and so unpredictable in terms of how it affects your loved one. It’s desperately sad reading and learning about the diagnosis in children and young adults. I can be pragmatic about my dad dying in his mid-70s but it’s those diagnosed who have young families, whole lives to live, that I find unbearably heart-breaking. It’s scandalous that there is no parity of funding in research.
When you look at breast cancer and other types of cancers, there have been so many advances in terms of treatments and diagnoses and we seem to be almost motionless with brain tumours because of the lack of investment in research, which is so unfair. It’s the biggest cancer killer of people under 40 and carries shocking statistics but, unless it touches your life, you have no reason to be aware of it.
“I want people to know that getting a brain tumour is not nearly as rare as they think it is."
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.
If you have been touched by Asmat’s tragic 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.