When Andrew Crowe was diagnosed with a grade 2 astrocytoma in 2001, his life changed beyond recognition. In this blog, his sister, Liz Fussey – who has been part of the PR and Communications team at Brain Tumour Research since the charity’s launch – shares a personal reflection on the long-term impact of a low-grade brain tumour and why kinder, more effective treatments are so urgently needed to give hope to patients and their families.
My family’s experience of a low-grade brain tumour, alongside my work at Brain Tumour Research, has shown me just how misleading – and even insulting – it can be to describe low-grade brain tumours as “benign”.
Surgery and treatment in the brain are not comparable to treatment elsewhere in the body. The consequences can be profound and lifelong, affecting cognition, mobility, independence, employment, finances, care needs, and even the ability to travel or obtain insurance. Whether a tumour is high or low-grade, the impact can be devastating. And for those who survive long term, the burden often grows rather than fades.
When my brother was diagnosed with a low-grade astrocytoma in 2001, it was the first time I had ever known anyone with a brain tumour. We were relieved to hear that it was not high-grade and that surgery might remove it. We assumed he would recover and get on with his life.
If only it had been that simple.
For a while, Andrew was able to return to work, but his life soon became marked by repeated surgeries to remove more of the tumour, as well as procedures to fit a ventricular shunt, unblock it, and later replace it. When the tumour began to grow again, he also underwent radiotherapy.
Working at Brain Tumour Research introduced me to many more people affected by brain tumours, particularly as I work with patients and family members to write their stories to raise awareness. It also became painfully clear to me that a low-grade astrocytoma can develop into an aggressive glioblastoma within 10 years of diagnosis.
Every MRI scan brought a familiar dread. We waited, hoping the next update would bring reassurance, and fearing the words that would change everything: that the tumour had become a glioblastoma.
So far, more than 25 years after diagnosis, Andrew’s tumour has remained low-grade. But the cumulative effect of everything he has endured has been devastating. Repeated surgeries in the brain carry risks that are difficult to overstate, and the after-effects of radiotherapy have shaped every part of his life.
At first, the changes were subtle. But, before long, they became impossible to ignore. Andrew lost the use of his right hand and arm and had to learn to write with his left. He developed partial paralysis down his right side, walking with a drag of his right leg and became increasingly prone to falling. In those days, physiotherapy was not routinely offered, so he paid thousands of pounds for short periods of private rehabilitation in the hope of improving his movement.
He also began to experience cognitive difficulties, noticeably affecting his communication. Eventually, he had to stop driving, which meant losing his independence. Around 15 years ago, he was no longer able to work. That loss was financial, but it was also deeply personal: a loss of purpose, identity and confidence.
Living alone, with no one to keep an eye on his safety, and on a reduced income, Andrew was eventually forced to sell his home and move into sheltered housing. It was heartbreaking to see him moving into a complex for much older people while still in his forties.
Andrew was fortunate to become friends with Helen, a kind and caring woman who had also recently moved into the sheltered housing complex. Realising that neither of them enjoyed the meals provided in the communal dining room, Helen suggested she shop and cook for them both. Andrew gratefully agreed and their friendship became an important source of comfort and stability.
With both of our parents now deceased and none of Andrew’s four siblings living within 60 miles of him, Helen has taken on more and more responsibility. We’re grateful that she keeps a close eye on Andrew’s medical needs, booking appointments and accompanying him to the GP, as well as to physiotherapy, eye tests, hearing-aid adjustments and neurological hospital visits.
A mini-stroke, a few years ago, robbed Andrew of the ability to walk, and he now relies on a wheelchair or mobility scooter to get around. He also needs carers four times a day for personal care, while avoiding any contact with his right side, as it causes him significant pain.
Having to give up work has obviously reduced Andrew’s income. His ill-health retirement pension, combined with state benefits, is quickly swallowed up by the cost of personal care, on top of everyday living expenses. Even a holiday and travel insurance becomes a major financial undertaking. There are very few travel companies able to provide the level of support Andrew needs, and with so little competition, the prices are eye-watering.
It is wonderful that Helen and Andrew both still enjoy watching films, comedies and sport on TV, as well as trips to see tribute bands at their local theatre. We all know that a theatre voucher is a much-appreciated gift. But it is also worth remembering that every journey beyond the limits of Andrew’s mobility scooter, requires an expensive disability-access taxi.
Andrew is not alone. Across the UK, families affected by brain tumours are living with these challenges every day.
Brain tumours are never benign. That is why I find it frustrating when people describe them as malignant or benign, rather than high-grade or low-grade. My brother’s experience, together with the many families I have met during my career at Brain Tumour Research, has made it abundantly clear: we need better, kinder treatments and ultimately cures for all types of brain tumours, whether they are high-grade or low-grade. Only then can people who survive long term hope to live, not just longer, but well.
Please consider making a donation to support the vital research taking place at our Centres of Excellence, including at our Plymouth Centre, which is focused on developing kinder treatments for low-grade patients.
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