How a charity saved my life

When Ross and Amanda walked through my door 18 months ago I had no idea they would save my life.

My husband Anth was so sick with a brain tumour. He’d had a craniotomy to cut out some of the cancer and was back at home, semi-paralysed, unable to walk, only his right arm capable of movement, completely debilitated and reliant on me and carers to look after him. We knew his condition was terminal. But he was very keen to help make a difference in the time he had left. He’d had a successful executive career and he wanted still to be “of use.” He wanted to help brain cancer research so on the recommendation of his neurosurgeon Dr Santosh Poonoose, we got in touch with the Flinders Foundation, the South Australian hospital charity which supports Flinders Medical Centre, where he had his operation.

Flinders was also the home of the South Australian Neurological Tumour and Brain Bank, which needed funding support to help it develop into an important research resource. Anth had decided to donate his brain to the bank. “If just one person is helped by this, then its worth it,” he would say.

So Ross and Amanda from the Flinders Foundation arrived on our doorstep and sat and chatted with us in our lounge room about the ways we could help raise money and awareness about brain cancer research. Anth agreed to be interviewed so that the Foundation could use the footage in promoting fundraising. The thought of a project gave Anth something positive to think about. A few weeks later Ross came with a cameraman and interviewed him. Anth enjoyed the opportunity to feel like he was helping Santosh, a person for whom he had enormous gratitude for giving him a little more time on this earth.

After Anth died, I threw myself into the Flinders Foundation. I needed to escape my overwhelming sadness. When I was doing things for the Foundation I was distracted from my grief. I could forget the terrible last days and skirt around the empty void in my life. I wrote emails and blogs asking for donations in memory of Anth, I helped organize silent auction items and wine donations and found sponsors for the Foundation’s gala fundraiser the PinkYellowBlue Ball. I sold tickets and organized tables.

Our table at the PYB Ball, photo of Anth in the forground

Flinders Foundation champion David Briggs being interviewed at the Ball.

Then after the ball, there was the Cambodia Cycle to Cure Cancer Ride to work towards. I’d agreed to go on this fundraiser trek of 340 km so I had to train. I bought a bike and started riding to and from work, and on weekends. Then I joined a gym. I got fit. I rode 30 km almost every day. And every night I’d be on social media, posting about my training, encouraging people to donate. I started training rides with my fellow trekkers and made friends. I met people who had lost loved ones as well, and others who were cancer survivors. We grew closer during the adventure in Cambodia. It wasn’t easy with the heat and poor roads and the distance. But we did it. We laughed a lot. We didn’t have to explain ourselves; we just understood. We had a common goal. We were a team. A community.

Bogan Bingo fundraiser

In Cambodia; Team Flinders

Without the Flinders Foundation, life would have been very bleak this past year. Don’t get me wrong; I still have my down days, my down weeks. Sometimes there’s a trigger. I might see something that takes me back to when Anth was alive. My mind plays tricks on me. I feel like a time traveller and I’m back with him getting a coffee at the café where we used to go in our lunch break from work. Or my mind flashes to the trauma. I see an ambulance and I’m back at the hospital, looking out the window at the helipad arrivals waiting for Anth to wake up from his brain surgery in the bed beside me. And then snap, I’m back in the reality of the present, without him, alone.

That’s when I get depressed. Life seems pointless, small, meaningless. Sometimes I am manacled to anxiety fuelled by the intimate reveal that life is short and may all be for nothing. “What if, what if, what if that’s it?” I’ll repeat as I shower, as I drive, as I wander listlessly down the supermarket aisles. I stop eating. I lose interest in my teenage kids. I avoid my friends. I don’t go out.

Grief can be very selfish. It wraps you in a black blanket so you cannot see outside of yourself. You see nothing but the emptiness of your own pain. There are times when your anguish is so acute, you can know nothing else. “Just make it stop” I would cry to myself in the months after Anth’s death, like some wounded soldier pleading for pain relief, for anything – even oblivion – to make the torment go away.

I didn’t know it at the time, but when Ross and Amanda walked through my door 18 months ago, they were pre-delivering me the analgesic I would need to dull this pain. What they gave me was a very powerful medication. The name of this pain relief is purpose. Purpose unwrapped that black blanket of grief and let me look around. It lifted me out of the quagmire of self pity and emptiness and gave me something I could do, something I could achieve. I had been powerless in the face of Anth’s illness. But I could adopt his goal and try to help even just one person, and then, as Anth said, it would all be worth it.

When Ross and Amanda set me the challenge first of the PinkYellowBlue Ball and then of the Cambodia ride, my focus shifted away from myself. I met the cancer researchers whose work will benefit from the research grants funded by the money we raise. I met with the neurosurgeons and neurologists who run the Brain Bank. I got to understand something of how important their work is, and how there is a gaping chasm in funding medical research in this country. Generally, only those projects with already demonstrable outcomes get the government funding. Experimentation is generally not rewarded until those experiments show promising results. Seed funding is needed for the start-up research, all that stuff that might fail, but then again might not, and from where many great medical breakthroughs come. I came to understand that new ideas are difficult to launch and these brilliant medicos and scientists need all the help they can get.

With this new insight, I realised that I could make a difference. And that I could encourage others to do the same. And when you feel needed, your purpose grows and strengthens. I could redefine myself not by my loss but by my purpose.

The other day, I was having a down moment when Ross and I spoke on the phone. He asked me to write this piece. He’s very perceptive and knew what I needed to hear to reset my thinking. He said “It’s important for the staff of the Foundation to know how they help not just the direct beneficiaries of the charity – the doctors, researchers and patients – but also how they help all the volunteers, fundraisers and advocates who donate their time and their effort to the cause. It’s important to keep the staff motivated and you can help do this Jill.”

Like before, something clicked over in my mind and the dark thoughts melted like icecream on a hot pavement. I started thinking what I could say, where I should blog this and who might publish it. I wondered if maybe I could encourage just one person to get involved, to take on a challenge, to support a cause in honour of a lost love. Or if I could motivate one of the Foundation staffers to go that extra mile. Again, I found strength in that amazingly valuable gift of purpose.

I encourage anyone who is suffering the terrible pangs of grief to find a similar purpose. As a medicine it should be prescribed in large doses to be taken often and when required. And while you are under its powerful influence you may find a way to help just one person which will, as Anth said, make it all worth it.

If you would like to donate your time, expertise or money to the Flinders Foundation please visit the website https://www.flindersfoundation.org.au/ or call (08) 8204 5216.

To read more about our bike ride go to;  Cambodian Pilgrimage: How a charity bike ride fundraiser helped lay my love to rest and Cycling Cambodia for Cancer.

For information on the Brain Bank see Brain Bank radio interview and Flinders Neuroscience Brain Bank website