In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Baljit Mehat, a successful businessman and father-of four from Wakefield, West Yorkshire, was diagnosed with a brain tumour in October 2021 after becoming shaky and confused on his way to a football match. The 58-year-old underwent a craniotomy in November and a biopsy revealed that his tumour is a grade 4 glioblastoma multiforme (GBM). In January he started taking a drug called AZD1390 in combination with radiotherapy as part of a clinical trial.
Here is Baljits story, as told by his daughter Simran…
It was last October that our lives changed forever, when I took our kids to visit my parents during the half-term holidays. My mum, Manjit, said that a couple of weeks earlier Dad had felt like something was switching off inside him and he’d been distracting himself by lying down or watching a game show on TV. He enjoys his drink and has IBS and colitis, which can make his stomach play up, especially when he’s been drinking. The day before we found out what was really going on he’d had a couple of drinks and I’d had a disagreement with him where he’d said things out of the ordinary.
“I brushed it off at the time but he told me he felt like something was wrong and he wasn’t going to make it to his 60th birthday; little did I know then that he might be right.”
The next day, Dad was on his way to watch an Arsenal versus Leeds match with his brother, his nephew and my brother when he became shaky and confused. He kept picking up the tickets and asking what they were and where they were going and he didn’t understand why his younger brother was in the car with them. Everyone agreed it was best to stop at the Northampton services where they were able to seek medical advice from some first aiders. There they recommended he went to A&E and called for an ambulance but it was going to take at least an hour to arrive so, rather than wait, my family decided to drive him to Northampton General Hospital.
We got the call to say Dad was being assessed and undergoing lots of tests and Mum decided to drive all the way from her home in Wakefield to be with him. When she got there she said he was looking around a lot and didn’t really know where he was which was quite upsetting for her. We tried to offer reassurance because from what my brother had described it sounded like he could have had a stroke but the doctors ruled that out fairly quickly.
“They ordered a CT scan and an MRI and then at around 2am they told him they’d found a mass on his brain.”
I kept thinking the mass could be fluid, maybe something to do with Dad’s alcohol intake, but none of us thought it would be a tumour. When we first heard those words from the consultant, we were on a conference call on loudspeaker and were praying it would turn out to be low-grade.
Dad stayed in Northampton General for two nights, until 29 October. They were going to transfer him to Cambridge or Oxford but he said he felt well enough to go home for the weekend and so they discharged him. He had an appointment the following Wednesday at the Leeds General Infirmary. That was when the consultant looked at Dad’s scans and said he appeared to have a grade 4 brain tumour but that they would need to operate to remove as much of it as they could and take a biopsy to know for sure what they were dealing with.
“It had come completely out of the blue and we were left shocked, wondering why us? What had caused it?”
We tried to be positive but Dad managed it best of all. He kept saying that nothing was going to happen to him whilst he had his rock, which is what he calls my mum. After that we went on an emotional rollercoaster. I had to return to my home in Bedfordshire and told him that although we would be in different parts of the UK, we were all still with him. His operation was set for the following Monday. He was told it would be high risk but the surgeons were confident they could get most of his tumour out, although the location of it behind his right eye meant that he would be left with permanent loss of his peripheral vision. Dad disputes this is the case but we think he’s a bit in denial about it.
Through my job as a social worker I work with children with disabilities and I had previously worked with a boy who had a glioblastoma multiforme (GBM). My gut was telling me that what Dad had wasn’t going to be good and although I was scared, I think in some way my previous experience of a GBM prepared me for what was to come.
“He went in for his op around 6am but Mum wasn’t allowed to be with him because of the COVID restrictions still in place.”
Instead, she sat in a waiting area for the nine hours he was in surgery, saying she just wanted to be near him. Her brother actually came from Huddersfield to surprise her and stayed to keep her company. I got a call just after coming back from the school run to say the operation had been a success and they’d removed as much of his tumour as possible. I was told he was in good spirits, although a bit sore and already cracking jokes, which was a huge relief.
“I FaceTimed him a few hours later and had to hide my shock at seeing his face so swollen.”
Knowing that he had woken up from surgery alone, without the comfort of having someone familiar with him, was the worst thing. The fact that you could go to a football match and sit among thousands of people but my mum wasn’t even allowed to sit by his hospital bed made me so angry. The physical therapist and occupational therapist discharged him straight away because he was able to walk and after two nights he was discharged from hospital.
“The second appointment Dad had following surgery is when his tumour was confirmed as a grade 4 GBM and we were told he probably only had 12-18 months to live, with treatment!”
I said we should try and spend Christmas together and we did but it was bittersweet because my youngest sister, Balreen, ended up having her first baby on 29 December so couldn’t be with us. Dad was also weaker and too tired to do the things he usually does, such as dress up as Santa on Christmas Eve, which we all wished he had been able to do. He had lost a lot of weight and I remember looking at him as he was carving the turkey and thinking how different he appeared. He never said it could be his last Christmas but I know we were all thinking it. When he went to bed at about 8pm, which was really early for him, the rest of us, albeit we were a bit drunk, started talking about everything and burst into tears.
As soon as we found out what Dad had, we started researching what was out there in terms of treatments and what he would need. I phoned countless hospitals to ask about the clinical trials they had and to see if Dad could be considered for them. I read something about a long-term survivor around the same age as Dad who had been involved in a Sativex trial and tried to get Dad on that but I was told it was for people with recurring brain tumours, which meant he wasn’t suitable. Leeds General did come back to me about an alternative trial, though, by AstraZeneca.
“They said if Dad was found to be eligible after blood tests and the like, they would put him forward for the trial.”
His glioblastoma is unmethylated which means it is more resistant to chemotherapy, essentially the tumour cells can repair the damage inflicted on them by certain drugs more effectively, which would have prevented him from being put forward for chemo. Thankfully, he was accepted onto the trial and as a result on 10 January he started taking a drug called AZD1390 in combination with radiotherapy. Of course, deciding whether to accept the trial was a dilemma in itself because it was only in phase two so not much was known about the effects of it. I tried reaching out to people in online forums to see how they were managing on it but only a handful had been involved so that proved difficult and in the end we decided to put our faith in science.
“When I heard they were going to need to take lots of blood from him, I got angry; he’s my dad, not a human guinea pig but I also really wanted him to be involved in it.”
They said he’d need to go to the hospital every day and warned that he might get really tired and that his skin could start burning. I couldn’t help but wonder if we were doing the right thing but we went ahead with it as planned.
“He didn’t like the radiotherapy mask because it felt so tight but I had warned him it would be uncomfortable and feel suffocating.”
He went to St James’s University Hospital in Leeds five days a week for 30 sessions whilst taking the AZD1390 drugs daily. Every other week he would spend up to nine hours at the hospital having bloods and other tests taken. Eventually, towards the end of his sessions, they found it hard to take his blood and had to warm him up with cups of tea and electric blankets. He ended up with what looked like a severe sunburn on the back of his ear where the radiotherapy had targeted and for a couple of weeks after the treatment finished, he was extremely tired and his appetite disappeared completely. He now has protein shakes to help him gain weight and to build up his immune system.
Dad’s last scan was in May and, compared to the one he had after surgery, his tumour is stable. He still has a nodule but we know his tumour is incurable so we have come to terms with that.
“His doctor told him to enjoy doing whatever he wants to do whilst he’s still fit and healthy enough to do it.”
My two sisters and I are married but my brother, Kirpal, was due to marry his fiancée, Jaz, in April 2023 so we started thinking about whether to bring their wedding forward. This was a really difficult conversation to have but we said it was more about ensuring he would enjoy the day rather than to do with concerns we had about him deteriorating or not be around at all if we waited. It’s now due to take place in October, which isn’t the simplest of things because it’s a Sikh wedding involving around 500 guests. We’ve had to change the venue but are all pitching in to help make it as special as can be.
Dad and Mum are going on holiday in a couple of weeks, without travel insurance as they couldn’t get cover, so we’re hoping they have a great time without any medical problems. Dad did have a seizure at the beginning of June, whilst we were at a wedding in Birmingham, which was awful. When I saw him he was shaking, sweaty and unconscious. That episode was put down to him being too hot and not managing well around a lot of people but that’s worrying in itself considering the fact we’re currently planning another wedding.
“The doctor said Dad was likely to have a recurrence of his tumour within seven months.”
Of the 10 people I reached out to previously with relatives in a similar situation, all are no longer with us. When they message asking how my dad is, it’s hard not to feel guilty but we’re just taking one day at a time. Dad’s retired and has four grandchildren to look forward to spending time with and it’s so unfair for someone to be putting a time limit on that. Your mind automatically fast forwards to the future, especially when you’re told the prognosis, but you have to try to remain positive. I know we have to be realistic but you also need to fantasise a little to remain sane.
“My beliefs did start to dwindle but then I realised that none of this is down to God, it’s down to us and if we remain positive we can get through it.”
It’s painful to think about Dad not being with us but I feel like I’m prepared for what will happen. I’m not accepting it, but I am preparing for it. Dad has shown us that he is our true superhero and has fought this and will continue to fight this for us. We firmly believe that the clinical trial has played a huge role in fighting this evil disease and are so grateful for all the support everyone has provided.
It would be easy to fall into the trap of waiting for the worst thing to happen but instead my family and I decided to put our efforts into something positive by participating in last month’s 5k Race for Life in Huddersfield. We called ourselves the Mighty Mehats and of the 515 people who took part, raising £21,000, our little team raised almost half with an impressive £10,000 and more with gift aid. We had a great time and would love to do more events like that in the future. We look forward to remaining positive and encourage all those in a similar situation to take each day as it comes and keep the faith in remaining strong and focused.
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.
Together we will find a cure