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 Aug 19, 2019

Crucial support is a lifeline for people with brain cancer

For ten years, the John Cummins Memorial Fund has donated more than $840,000 to the Olivia Newton-John Cancer Wellness & Research Centre (ONJ Centre) for the Brain Tumour Support Service (BTSS) – a state-leading supportive care service for people diagnosed with brain cancer.

“We see people at their most vulnerable – but we try to find creative ways to support them, keep them informed and put them in touch with the right services at the right time,” says Dianne Legge, BTSS Co-ordinator.  “We can’t take away the distress of the disease, but we can help people cope with it a little better, travel a bit lighter and realise they are not doing this alone.”

A primary malignant brain tumour, called a Glioblastoma, is a serious diagnosis for which there is no cure.  Treatment is available and can slow down the progression of the disease, helping patients and their families adjust to living with brain cancer. However this brings its own challenges – uncertainty, fatigue, ability to work, personality changes, relationships, changing role within the family – and clearly shows the need for specialist support.

“The Brain Tumour Support Service gives practical support through information and education,” says Dianne.  “Personal contact with patients is critical too, and we always make sure we are there sitting beside a new patient when they receive their diagnosis which is obviously a time of great confusion and uncertainty. We also check in with patients after their initial treatment is finished and if/when they have a recurrence.”

“It’s a really powerful thing for these patients and their families to have a connection with someone who is consistently there for them through their diagnosis and treatment.”

A crucial aspect of BTSS are the support groups which have become pivotal in providing a safe space where patients can be themselves and connect with others. The Brain Tumour Support Group (BTSG) meets once each month, sharing a lunch cooked by Di in the Wellness Centre.

“There’s always lots of laughter and camaraderie, sometimes there are extraordinary discussions about things like bucket lists,” says Dianne. “The group holds and helps people by connecting them to others going through the same experience as they are.”

Dr Lawrence Cher, one of only two neuro-oncologists in Victoria, has a long association with the John Cummins Memorial Fund – starting when John Cummins himself was diagnosed with glioblastoma in 2005.

“Patients with brain tumours and their families, like John and Di Cummins have multiple issues that they are confronted with from the time of diagnosis,” says Dr Cher. “There is the shock of finding out about the tumour, dealing with the impact of the tumour on their neurologic function, the issues of seizures and potential side effects of therapy.”

Di Cummins, John’s wife, was by his side throughout his diagnosis and treatment at Austin Health (in the days before the ONJ Centre was built) and realised there was a need for credible information about brain tumours and a way for people with brain tumours to connect with each other.

“One day when we were at the hospital for an appointment, I noticed that there were several men in the waiting room having a chat and sharing information,” says Di. “I thought to myself ‘my goodness they need to get together’! After John died (in August 2006), a group of us approached Austin Health Cancer Services and put forward a proposal for a support service for patients with brain tumours. Austin Health was brave enough to take us on.”

Since then, thanks to the John Cummins Memorial Fund, the BTSS is providing consistent and much-needed support. In the last year, the service supported 184 patients and their families, with 87% of these accessing the service on more than one occasion. The BTSG sees 16-23 people regularly attending each month. Long-term members still continue and provide much-needed support to those newly diagnosed.

“The John Cummins fund has continued to provide the resources to fund the BTSS which has been vital to the work we do, helping provide hope and support to patients and their families,” says Dr Cher. “Without the initiative of Di Cummins and the John Cummins Memorial Fund none of this would have happened. It has made a huge difference to neuro-oncology in Victoria.”

“What we’re really talking about is supporting people as they go through a pretty challenging and confronting time,” says Dianne Legge. “We are saying to these patients and families ‘we’ve got your back’ and we’re with them all the way from diagnosis through to end-of-life care. We are extremely grateful to the John Cummins Memorial Fund for their significant role in helping us establish and provide this state-leading service.”

The Brain Tumour Support Service can be contacted on (03) 9496 3315 or email btso@austin.org.au

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The heroes behind BTSS – Anne Crowley, Dianne Legge and Di Cummins with patient Lyn.