Bereaved people who have had a family member or loved one who died from cancer - your top 5 priorities

Please list your top 5 priorities that you would like to have this service providing...
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Friends of YA cancer patients - top 5 priorities

Please list your top 5 priorities that you would like to see this service incorporating...

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Health Professionals - top 5 priorities

Please list your top 5 priorities that you would like to see this service incorporating...

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Family & Carers - top 5 priorities

Please list your top 5 priorities that you would like to see this service incorporating...

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Cancer Patients - your top 5 priorities

Please list your top 5 priorities that you would like to have this service incorporating...

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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!

HELP WANTED...

Hi guys,

Just letting you know where I am at... and how the heck I am going 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...

Currently I am deep in the planning and stages of creating this support service across Australia for our YA (25-40 years) cancer community, and I am consulting with a whole range of people in this process.... this includes you!

HOW CAN YOU HELP???

You will notice a whole heap of new topics that are posted for specific groups of individuals that I feel can and should contribute to a service like this. Find the topic that applies to you and post your top 5 priorites that you think are important for this service to cover. By doing this you are helping to form a structure for this service.

WANT TO DO MORE THAN THIS???

If you are as excited as I am in developing a successful and worthy project like this (you really want to do more than listing your top 5), then send me an email and tell me how your wonderfull skills and initiatives can contribute to this up and coming service. nshipard@bigpond.net.au

lets begin with the name...

Hello,

The name 'Nikki can 4 YA' is an abbreviation for Nikki (me) can (cancer, australia, network) 4 (for) YA (young adults).

It basically means that I am putting myself out into wider world to commit to the cause of starting Australia's first support network for the young adult (ages 25-40) cancer community.

Today's blog entry is the beginning of this process.

Wish me luck, advice and lots of hope in connecting us all,
Nikki