brainWAVES The Newsletter of the Brain Foundation
Winter 2017
Callum's tribute to Jacinta All of our regular supporters would have been aware of a great fundraising effort early in 2016, when Callum Smith of Melbourne, hopped onto his surf ski and paddled, for two days, around the edge of Port Phillip Bay. No mean feat – in fact, quite inspirational from such a young man. Well, Callum decided to do the same again in February this year. His sister has survived the removal of a tumour in her brain stem. But that is only the beginning of her story. Below is Callum’s tribute to Jacinta. It reminds us all of why we do what we do and why you support our efforts. When these obstacles come into your life it can feel so unbecoming. Jacinta’s healing has peeled away at each layer of her identity until it stripped her right down so that she has had to start again. I’ve never told her this but it has been a privilege to witness her build herself up piece by piece over the past two years - she’s faced her own mortality, experienced pain I hope none of you ever have to feel, loss on so many levels. But I don’t think she would change anything. Because she turned the sh…ty experiences into empathy. Challenge you to find a more loyal or caring person. Callum with his support crew from Port Melbourne Life Saving Club 2017
This isn’t the norm for me to share something so personal. But this is important. The ocean has been a place where I have been able to reflect, relax and find solace. I’m lucky to have this place where I can go to feel centre to self. It’s given me so much – and in my opinion built me into a person that I’m proud to be. The past two years – and in reality it has been three years – I’ve watched my sister’s ongoing battle with her spinal cord tumour and debilitating neuropathic pain. If you were to look at her social media profiles or even meet her in person you’d have no idea of what she puts up with every single day. People ask her how the recovery is going and she’ll smile and tell them it is going great and that life is back on track. But really – her recovery has been mental not physical. She lives in chronic pain now – hard to imagine a 25 year old in that state – but it’s the truth. I’ve seen her in tears at 1am because her bedsheets feel like they’re burning her skin. That’s what neuropathic pain is. Its ants crawling under your skin, it’s burning, and its agony when wind hits you.
The reason there isn’t, is simply lack of Funding. It is a simple as that. Brain cancer receives less than 5% of federal government cancer research funding. So whilst awareness is a word said far too often, in this case it is hugely important. I implore you to stand with us to urge the government to put more funding into the areas of brain cancer and neurological disease. And whilst we do this – please donate to the Brain Foundation. No one deserves to die or suffer simply because they don’t have the funds.
She’s not just there for people in their time of need but she is there for the whole ride. She’s stood by people and shown genuine care, even for those you didn’t deserve it.
It can feel as though you’re at a dead end – survival rates for Brain Cancer have not improved over the past 30 years. And it makes ZERO sense that the government are not pulling their weight to help this fight.
October this year (2016) she lost one of her closest friends to brain cancer. Kate Bourke. Kate was a mother, a daughter, a partner, a best friend. She was young, fit – in fact she was an Iron Woman, and supremely funny.
So this February as I undertake this paddle. I do it for not only Jacinta and her late friend Kate but for all those who are warriors in the face of neurological disease.
The other thing with this disease as with so many neurological illnesses is that whilst you are fighting for your life – you are financially drowning. Brain cancer is the most expensive cancer to have. Brain cancer costs more per patient than any other cancer because it is highly debilitating. It affects people in their prime and often means they and family members cannot work if they become carers. You only have to search the internet to see that for those aged between 35-44 brain cancer accounted for the highest proportion of cancer expenditure – totally $32 million. People often ask Jacinta whether she is on pain killers still. It’s a question that for those who have zero idea about her condition would not be aware of how hurtful it can be to ask that. Jacinta is on neuropathic pain killers twice a day. And won’t be able to stop until there is more research and developments into nerve pain.
Sentimentally Kate had the same connection as I did to the ocean. She would swim regularly in the ocean down the peninsula. Often out to a point where no one could see her – even when she was unwell. I do this in memoriam for Kate Bourke. And I’ll be raising money for the Brain Foundation. Jacinta once told me that pain transforms you – you have to learn to accept change even if it is excruciating – you have to stand up when it slaps you down. You’re not meant to be happy all the time. Life can be hard. And challenges happen. Not because you’ve done it all wrong but because it can hurt for everyone. You have to let the obstacles come and leave you with ammunition to move onto the life you were meant to live on this earth. Kate’s family – her mother Carol and mine are determined to push the government to put more funding towards neurological disease.
Contact the Brain Foundation PO Box 579, Crows Nest NSW 1585 Telephone: 02 9437 5967 or 1300 886 660 Email: info@brainfoundation.org.au Visit our websites brainfoundation.org.au and headacheaustralia.org.au