Who am I??? and why am I doing this???

Hi,

As this blog is about to be filtered out into a much wider audience beyond my personal friends, I thought I had better give a brief history of me... well here goes...

I am a young adult cancer survivor myself of 5 years. I was aged 28 in 2002 when I was diagnosed with acute lymphoblastic leukaemia. Throughout my treatment at the Royal Melbourne Hospital, I experienced great isolation and a lack of psycho-social support. I attribute this to being treated in the adult ward, surrounded with elderly patient’s issues and their perceptions of their illness. I and the many other YA patients I know feel at times that medical and support staff are not familiar with our young adult issues and the best treatment practices.

The isolation I felt was increase ten fold when I was discharged from RMH (1 ½ years later) and went back home to live with my mum in regional NSW at age 30! This was greatly attributed to some major complications from my treatment (which had to be stopped due to a rare fungal infection in my blood) and being told there was an 80% chance that I would relapse, and then they could only offer me palliative care. I am happy to say that I have not relapsed and am extremely fit and healthy, with no meds to take or physical signs that I was ever sick.

An outcome of my illness has been a drive to create better services and outcomes for cancer patients. I have kept myself busy over the past 3 ½ years studying at university to gain skills and knowledge that I can apply to helping others. I am one month off graduating with a Bachelor of Health in Health Promotion/Health Education. I have also instigated projects and been involved with various committees and consumer based initiatives. For example:

• I instigated and co-managed the event ‘Walking Tall’ that has to date raised over $300,000 to provide life saving test for blood cancer patients in Australia, and training for a dedicated oncology psychologist for Albury-Wodonga.
• Currently I sit on the Steering Committees for the a) onTrac@PeterMac project ‘Improving Palliative Care for Adolescents and Young Adults with Cancer’ and b) ‘The Cancer Council NSW – Regional Area Network Conference 2008’.
• I was a Young Adult spokesperson at the 2005 onTrac@PeterMac workshop for ‘Meeting the challenges of young people with cancer in rural and regional Victoria’.
• I have completed training in Consumer Advocacy with the Cancer Council NSW and the Public Interest Advocacy Centre.
• In 1 week’s time I will be attending the Cancer Council NSW ‘Consumer Research Training Workshop’ in Sydney.

Since my diagnosis, I have been following what YA initiatives there are in America, and can see that they are going ahead in leaps and bounds compared to us. I have had recent contact with Heidi Adams from Planet Cancer in regards to perhaps starting up an Australian Branch of Planet Cancer. I feel that Australia is lagging behind the in the support and treatment services/facilities for YA that are evident in the USA and the UK.

So I am going to do something about it....

...I am proposing to develop a national support service for YA across Australia using online forums with topics that are consumer (YA cancer patients) based to end the isolation we all know exists...

I think it is a much needed service that could also possibly link both the YA community and health professionals across Australia to provide support, knowledge and connection!