Brian from Birmingham died in May 2022, eight months after he was diagnosed with a high-grade glioma after noticing a ringing in his ears. The father-of-six, 68, was told to chew gum by his GP, for tinnitus. His symptoms continued with a tingling on one side of his body, which he put down to recently having COVID and the vaccine. Soon after, he lost feeling down the right-side of his body and was taken to hospital where a scan revealed an inoperable mass on his brain. His only option for treatment was radiotherapy, which despite shrinking the tumour, was not enough to compete with the aggressiveness of the tumour.
Here is Brian’s story, as told by two of his children, Tony and Jade…
Dad’s dream when he retired was to move to the seaside with our mom, Maryann. Sadly, the year he was planning on the next chapter of his life, he was diagnosed with a brain tumour.
Dad started to feel ‘strange’ in May, 2021. He had a ringing in his ears which the GP thought could be tinnitus and told him to chew gum to help. He had blood tests which came back as normal but his symptoms persisted.
In September, he began to complain of headaches and developed pins and needles in his right arm, which he put down to recently having COVID and then having the vaccine. The day before he was taken to hospital, he told us he didn’t feel well. He said he felt dizzy and he couldn’t balance properly. He would usually wait up for our mom to finish work but on this occasion, he took himself to bed.
The next day he lost feeling down the right-hand side of his body, almost collapsing on the kitchen table. Dad’s speech became slurred and he was very confused. We called an ambulance and he was admitted as it was suspected he was having a stroke. He had an MRI scan and the results delivered a shock for the whole family. Dad had an aggressive brain tumour which was inoperable as it was growing on his brainstem. Even a biopsy of the tumour, thought most likely to be a high-grade glioma, wasn’t an option as the neuro-oncologist feared the procedure could cause life-changing injuries.
The day after Dad found out about his tumour, he left us a note which said that he wanted to try and live the rest of his life as normal as possible and not speak about his disease. We did our best to do as he asked, even though deep down, we were all heartbroken and the grieving felt like it had already begun.
“We were told, even with treatment, that Dad would be lucky to survive a year.”
We asked about clinical trials but there was nothing available for Dad at the time. His only option was radiotherapy which he started on 24 November and finished on 14 December, having 15 sessions in total.
After the treatment, Dad deteriorated rapidly. During the first week of January 2022, he lost mobility and was bed bound, unable to walk and generally appeared weaker. We thought this could be side effects of the radiotherapy and on 7 January he was taken into Birmingham Heartlands Hospital. Dad was found to have low platelet levels which concerned his medical team.
On the same hand, we seemed to be dealt positive news with results of an MRI which confirmed the tumour and surrounding area of swelling had shrunk. Doctors shared their surprise with us, they said this was most unusual for someone with Dad’s type of tumour.
Sadly, our optimism was short lived. Even with scan results suggesting Dad should be stable, he continued to deteriorate. Doctors said this was probably due to the location and aggressive nature of the tumour. All treatment stopped and we were put in contact with a palliative care team who began to play a greater role in managing Dad’s needs and supporting the whole family.
Towards the end of his life, Dad became forgetful. He couldn’t remember what he’d eaten or even if he’d had a meal. His memory travelled back in time to when he was a child. He’d ask: ‘what time am I going to school?’ and question if his parents were upstairs (they separated when he was a boy and were no longer alive).
Other days he woke up thinking he was late for work, as he tried to get out of bed, he soon realised he couldn’t stand or walk. We used to tell him they had given him the day off so he could just relax. Although his memory went back to these moments of his early life, he still knew each family member by name, me, my sister Jade, our siblings, Duncan, Craig, Nicola and Aimee, and his wife/our mom. We asked him daily. He became very confused as the tumour continued to grow.
One of Dad’s last wishes was to go on a family holiday. In May we managed a few nights in Brompton Lakes. Days later, on 25 May 2022, after returning home, Dad passed away, leaving behind his loving wife, children, grandchildren and not forgetting his much-loved chihuahua, Remy.
Our dad was a very brave man and he will always be our hero. We miss him so much and we hold on to all the precious memories we have.
As a family we have learnt the hard way how we desperately need more funding to research brain tumours. We have so many unanswered questions.
There must be kinder treatment options, more treatment options, life-saving treatment options. We believe more can be done and our hope by supporting Brain Tumour Research, is that no other family has to experience the loss of a family member to this horrendous disease.
Tony and Jade Goldie
October 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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Brian’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