For those of you who don’t already know me, my name is Bianca and I am a patient member, as well as a proud member of the QLD committee of 2009 and 2010. I joined CanTeen in March of 2008 and attended my first camp the day shortly after finishing my nightmarish dose of chemo and radiation for non-hodgkins lymphoma. I am now 23 and have been in CanTeen for almost 2 years. But this isn’t really about me, it’s about AYA, how I came to be so passionate about the issue and how we are ensuring we get the services and treatment that we need in order to survive our cancer diagnosis as a young person!

After only a few camps I was asked to participate in the production of a DVD that was to be used at the upcoming National ‘Colour My Life’ Fundraising Dinner. It was the first taste I had of using my voice and my story to make a change to all that I saw was wrong with the hospitals and treatment of adolescents and young adults in Australia.  Then I was given the opportunity to speak at the Fundraising dinner and experienced first hand the effect a young person can have in sharing their story, and informing the public about the situation young people face in sharing wards with 70 and 80 year olds, and not receiving the age specialised treatment that could in fact be the one thing that saves us, or at least aids significantly in our overall recovery process. I started to see that the issue was bigger than just me, other young people were being forgotten and neglected in the ‘retirement home’ style hospital wards of our country.

CanTeen had already pledged to make a difference to this and received the backing they so desperately needed following the 2005 Senate cancer inquiry that recommended that ‘state and federal governments examine the feasibility of establishing specialised adolescent cancer care units in public hospitals.’ In other words, research and statistics were gathered from other countries and specific case studies to show how adolescents and young adults (AYA) benefit from receiving treatment in a facility that is specialised towards that age group, and in particular in receiving a treatment that is suited to a 15-25 yr old instead of a 70 yr old patient. I just wanted to reiterate the importance of this cause by telling you all of one example of how a young person may be disadvantaged, and this arises under the issue of fertility. A hospital and team of doctors that primarily focuses on the treatment of cancer in a person in the later stages in life are not going to put a lot of emphasis on the issue of fertility and the effect chemotherapy can have on ones fertility. Therefore when a young person comes through the hospital system with a full life ahead of them, consisting no doubt of starting a family and living a long prosperous life as a parent, grandparent etc, the issue of fertility is not one focused on, nor is the treatment designed to be in favour of preserving a persons fertility due to the simple fact that a 70 yr old is unlikely to see this as a priority and be hoping to start a family and have children in the near future. This is what happened in my case, and now my fertility is an unknown certainty and something I can no longer take for granted. Definitely a scary realisation.

But regardless of the considerable money the government had promised this project, we still needed a significant sum to match the Governments pledge in order to finally see youth cancer care implemented throughout hospitals. And this is where I knew I could help make a small difference- raising the issue and making a fuss about it any chance I could get and using my story to represent the voice of so many young adults being treated today!

And so I participated in the ABC Heywire Youth speak out initiative where my blog entry entitled me a spot at the week long parliamentary discussions between young people and various departments in government about the issues we face. Mine was apparent, and I was going to make the issue of adolescent and young adult cancer patients evident in everyone’s mind. I took on every media opportunity I could, radio interviews and newspaper articles, and brought the issue up in the minds of every politician I could corner. I knew that change would begin with raising awareness, and that’s exactly what I planned on doing! If nothing else, I was making good use of my legal and political skills from uni!

Small changes were being made here and there. Courtney and I were asked to help design the ‘youth focused’ rooms in the Townsville hospital and our input was greatly received and implemented shortly after to see bright colours, new tv’s and a young adult friendly kitchen complete with an espresso maker. All the things that would have made my stay in hospital that tiny bit more comfortable and less depressing than it was.

And then late last year, the Sony Foundation announced their partnership with CanTeen in helping to raise as much of the significantly remaining $15million as they could. It was a massive step forward in the AYA cause and was sure to raise plenty more publicity and a tonne more awareness in the public. Not to mention will undoubtedly help in getting the age specific treatments and youth friendly wards off the ground quicker than expected, and therefore help us to see more young people survive their cancer diagnosis.

And this is where the Sony Foundation heard about my passion and got in contact with me to be involved in their contribution to the cause also. I was asked to represent the CanTeen and other patient members and attend a Golf Challenge in Sydney to share my story among the Sony representatives and encourage them to donate to the well deserved cause. We raised over $50, 000 over a few rounds of golf, and not to mention I had a blast. And then in late October I was asked to be involved with the official launching and announcement of their partnership with CanTeen through a massive event called Wharf4Wards at Sydney’s well known and fancy Woolloomooloo wharf! A mini documentary was filmed on my dad and I telling my story (which was played in front of the hundreds at the event), and then I was asked to speak briefly in front of the red carpeted, well to do and elite crowd about my story and the work being done by the Sony Foundation and Canteen for the AYA cause. It was an unbelievable experience and definitely one not to forget anytime soon, and the best part of it… over $300, 000 was raised. Oh and I even had a little stint on the Today Show live from the event, where I was able to massively plug the AYA cause and how much cancer patients need these AYA services! The event also launched the buy-a-builder online initiative (which I’m sure you read about in your recent copy of LINK). It’s all very exciting, and making significant dents in that $15million needed. Which therefore means…. We are getting closer and closer to our goal of national AYA cancer services throughout our hospitals. ITS SO EXCITING !!

Most recently, I have been asked to represent CanTeen as an official AYA ambassador to the Sony Foundation, which I was very excited to accept and am very much looking forward to the contributions I’ll be able to make in the near future to ensuring we get closer and closer to that goal. And I’m sure I’ll enjoy myself along the way with the red carpet celebrity events, working with the other famous ambassadors (including Aussie Idol Stan Walker) to represent the Sony Foundation in their work, and the multitude of media opportunities to make sure people never stop listening to us fight the cause!