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“Investment in research is vital, to encourage bright minds to ask new questions, and challenge existing ones around glioblastomas.”

Involvement volunteer Baljit Ahluwalia lost her mother, Harbans Kaur Walia, to glioblastoma in 2020.

Glioblastoma diagnosis

Baljit Ahluwalia, from Pinner, remembers her mum, Harbans, as “an absolute powerhouse of a woman, who held our family together and was the love of my dad’s life.” Well known and respected in her local community, she once worked three different cleaning jobs, to support Baljit and her brothers through university – and had to be persuaded to finally retire from work.

Harbans’ glioblastoma diagnosis came in October 2019, when she complained of discomfort in her left hand. Her GP suspected Parkinson’s disease. Future investigations were planned, but over the next few days, Harbans revisited the doctor, convinced that something wasn’t right. After a further GP visit, it was suggested she go to A&E. A CT scan was ordered, which revealed a mass on her brain. Baljit said:

Mum was immediately admitted into hospital and then a few days later, following consultations with specialists at Charing Cross, mum was diagnosed with a Glioblastoma Multiforme. A term that we had never heard of before.”

A former headteacher, Baljit had some awareness of brain tumours, having supported a child diagnosed with one while in her care, but had never thought the condition would affect her own family. She said:

“I remember Googling, ‘Glioblastoma Multiforme’ that night after mum’s diagnosis and the breathtaking horror on reading about them.”

Harbans Kaur Walia
Harbans Kaur Walia with her children
Harbans Kaur Walia stands outside her house. Having passes away from a glioblastoma her daughter is campaigning for research into brain tumours

Limited treatment options

To begin with, Harbans’ family clung to the hope that she would be treated, and recover. Learning that treatment options for this condition are so limited was a huge shock. Baljit said:

“At the time, the “options” for treatment did not feel like options. The only option was whether mum took them, or left the tumour to grow further and cause more damage. The options available, crudely, were to prolong life or not, there really wasn’t a choice.

“It was only a year after mum died that I started to look to understand more about brain tumours.

“I soon discovered that treatments for glioblastomas hadn’t changed for over 30 years and the standard treatment remained as partial removal, chemo and radiotherapy. And if you happened to be in your early 70s, as mum was, further treatment was likely to be refused.”

Having agreed to be part of an MRI-focused research project, trialling the use of high specification imagery to enable a better targeted operation, Harbans underwent surgery in November 2019, just weeks after diagnosis. Chemo and radiotherapy followed. Baljit said:

“Chemo and radiotherapy exhausted mum, yet she was happy. She felt that she was getting her life back, with her children and grandchildren around her for every moment.

“Mum did start to lose her hair over time as a result of the treatment. Being a proud Sikh and Punjabi woman she always kept her hair long and bound. Dad found combing mum’s hair too upsetting so I would carefully do it. At a point, I had to ask mum if I could cut off what was left of the long strands.

“Mum managed the side effects of the treatment a day at a time and always with gratitude and hope. Her only request would be that she wanted to go for walks, to the park and to see the swans and ducks and we would take her until she became unable to.”

Investment in research is needed

In February 2020, the family were devastated to learn that the tumour had started to grow back, and doctors advised that further chemo and radiotherapy would not help Harbans. She was given six months to live. Harbans died at home in Baljit’s arms, in October 2020.

Baljit, who is now an Involvement volunteer at The Brain Tumour Charity, supports The Charity’s investment in research into glioblastoma, which currently has no cure. Baljit said:

“My mum loved life. She treated each day as a gift, each meal as precious, and her family was everything. A glioblastoma took away her right to life.

“To save one life from this disease is a success. That one life then impacts on others, a family, a culture and a community.  With greater understanding through research, hope becomes tangible for those in the future who will face a glioblastoma diagnosis.

“Investment in research is vital, to encourage bright minds to ask new questions, and challenge existing ones around glioblastomas; to enable quicker, and more accurate diagnoses – and to improve understanding, and assessment of brain tumour cells in order to develop better, more effective treatments.”

Baljit, an Involvement volunteer with The Brain Tumour Charity, stands with a picture of her mum while campaigning for a strategy to improve brain tumour research

Baljit is an Involvement volunteer with The Charity.

How is our research helping?

We have recently funded two innovative research projects testing ways to improve glioblastoma treatment. One project is at the University of Leeds and the other is at Kings College London. These projects are part of our Expanding Theories grant which aims to support pilot studies that explore and develop novel concepts that may eventually lead to significant improvements in clinical outcomes for people with brain tumours.

Dr Lucy Stead, who is conducting research into brain tumours

Dr Lucy Stead

Professor Khuloud Al-Jamal

Professor Khuloud Al-Jamal, who is conducting research into brain tumours