Cancer Council survey for Young Adults with cancer - A chance to have your say!
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Young Adults section of Cancer Connections
I would like to welcome you to the brand new Young Adults section of Cancer Connections. Here you will find the latest young adult discussions and blogs, as well as news about upcoming events for young adults with cancer. Soon, we'll also have a link to our In Focus section, with podcasts on topics specially designed for young adults, like sexuality, nutrition, complementary therapies and treatment side effects.
To connect with other YACs, follow the below link to have a look around and join our new community.
http://www.cancerconnections.com.au/yacs
Sunday, July 5, 2009
What is this new Australian Young Adult cancer support service?
Cancer Connections is Cancer Council NSW initiative that provides an online service that 'supports people affected by cancer'.
You will notice on the sites homepage a brand new Young Adults section. Here you will find the latest young adult discussions and blogs, as well as news about upcoming events for young adults with cancer. Soon, it will also have a link to the 'In Focus' section, with podcasts on topics specially designed for Young Adults, like sexuality, nutrition, complementary therapies and treatment side effects.
There are many more exciting things to come for this site too, like the ability to share photos, videos, music, art and much more. In fact YOU can help shape this new Young Adult section and make it what ever you want by speaking directly with the site developer, who is available on a daily basis to chat through any of your ideas.
So get onboard the CONNECTION TRAIN, create your very own profile, post a forum topic or add a blog entry, so you can meet other young people going through similar situations as you.
Nikki is personally inviting you to join Cancer Connections at
http://www.cancerconnections.com.au.
EXCITING NEW ONLINE SUPPORT SERVICE ABOUT TO BE LAUNCHED FOR AUSTRALIAN YACs [March 1 2009]
The Cancer Council's (CC) 'online support website' is being rebuilt to address all the needs for Young Adults with Cancer (YACs).
The crew at the CC are super busy putting all this together as we speak as this new website is scheduled for launch this month!!
The great thing about this website is it will be a place were YACs can meet other YACs and find information hubs for the topics around the 9 key areas of concern that were identified in my research study last year along with 3 additional ones that the CC consider also important.
Here are the topics:
1. Sexuality and body image
2. Isolation
3. Independence and autonomy
4. Supportive cancer care
5. Treatment side effects and fertility issues
6. Emotional burden and peer support
7. Relationships, partnering, friendships, having a new value system and who 'sticks around'
8. Survivorship, fear of recurrence and long-term effects of treatment
9. Nutrition and diet
10. Complementary therapies
11. Study and work
12. Financial burden and insurance
HOW YOU CAN HELP...
The CC are now in the process of trying to find some YACs and/or YAC carers (either young adult carers or carers of young adults) who are willing to be interviewed for podcasts to go on the YAC site. The interviews will be about 15 minutes long, and they can just use your first name or even a fake name if that’s what you prefer. They are audio-only. You will be interviewed by health professionals and/or cancer support specialists purposefully selected to engage with YACs in a thoughtful manner whilst at the same time having fun.
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If anyone is interested in participating in these interviews, please send me an email ASAP (as the CC hope to have the first interview ready to go up on the site in the next 2 weeks) and I will organise for you to meet the CC crew for a chat.
This is going to be awesome!
Nikki
nshipard@bigpond.net.au
The crew at the CC are super busy putting all this together as we speak as this new website is scheduled for launch this month!!
The great thing about this website is it will be a place were YACs can meet other YACs and find information hubs for the topics around the 9 key areas of concern that were identified in my research study last year along with 3 additional ones that the CC consider also important.
Here are the topics:
1. Sexuality and body image
2. Isolation
3. Independence and autonomy
4. Supportive cancer care
5. Treatment side effects and fertility issues
6. Emotional burden and peer support
7. Relationships, partnering, friendships, having a new value system and who 'sticks around'
8. Survivorship, fear of recurrence and long-term effects of treatment
9. Nutrition and diet
10. Complementary therapies
11. Study and work
12. Financial burden and insurance
HOW YOU CAN HELP...
The CC are now in the process of trying to find some YACs and/or YAC carers (either young adult carers or carers of young adults) who are willing to be interviewed for podcasts to go on the YAC site. The interviews will be about 15 minutes long, and they can just use your first name or even a fake name if that’s what you prefer. They are audio-only. You will be interviewed by health professionals and/or cancer support specialists purposefully selected to engage with YACs in a thoughtful manner whilst at the same time having fun.
--------------------------------------------------------------------------------------------------
If anyone is interested in participating in these interviews, please send me an email ASAP (as the CC hope to have the first interview ready to go up on the site in the next 2 weeks) and I will organise for you to meet the CC crew for a chat.
This is going to be awesome!
Nikki
nshipard@bigpond.net.au
Important announcement! I am meeting with the Cancer Council NSW in Feb to plan what can be done for YACs in Australia! [January 16 2009]
It's offical, I have been booked in to meet for a day with various members of the Cancer Council NSW (TCCN) present the findings from my study and have a planning session that will detail what and how they can help YACs in Australia.
I hope that this is a defining moment in the young adult and cancer movement here in Australia.
I am very, very excited about the prospects of having such a wonderful organisation which has some very inspiring staff members who work in various divisions of the TCCN, whom I think are equally as excited to get the ball rolling for YACs in Australia
Three cheers for the CC
HIP HIP HOORAY!
HIP HIP HOORAY!
HIP HIP HOORAY!
I hope that this is a defining moment in the young adult and cancer movement here in Australia.
I am very, very excited about the prospects of having such a wonderful organisation which has some very inspiring staff members who work in various divisions of the TCCN, whom I think are equally as excited to get the ball rolling for YACs in Australia
Three cheers for the CC
HIP HIP HOORAY!
HIP HIP HOORAY!
HIP HIP HOORAY!
MY STUDY IS FINISHED [Nov 26 2008]
Finally... after 12 months of planning, research and committment my study is complete. I would like to share the results of my study, 'The Lived Experience of Young Adults with Cancer (aged 25-44 years) in Australia" here in this blog.
Statement of Results: The Lived Experience of Cancer and Young Adults (aged 25 - 44 years) in Australia
This phenomenological study described the impact that cancer had on the lives of thirteen young adults with cancer (YACs), to provide new knowledge and understanding about the issues that affect this population, and to help inform and shape appropriate cancer-care support services for this age group. There were a broad range of personal factors that defined the experience of cancer for a YA. In some cases, the immediate and long term implications were related to the severity and varied backgrounds in the biological factors of their cancer, yet in others, it was indicative of unrelated and more elusive factors. Two main areas of discussion emerged which enabled the development of two essential themes* for YACs:
1. Personal experiences.
2. Conjoined experiences.
A personal experience includes aspects such as the way a YAC uniquely characterises and feels about their cancer and the manner in which they choose to place it within their lifeworld. This area is related to issues of 'themselves' such as the fear and emotions felt when diagnosed, how a YAC views their life and surroundings, and how the values for a YAC might change after having cancer. A conjoined experience on the other hand suggested the way that cancer may alter existing relationships for the YAC, or the way in which new connections formed as a result of having cancer. It is this second theme that sets young adults apart from children, adolescents and older people with cancer, as for example, with the fact that YACs tend to have extended relationships and interactions with other people such as partners and work relationships. In addition to these main themes, a number of sub themes were identified.
For the personal experience, there were three subthemes that emerged:
(1) Impact: cancer has an immediate effect on the YAC as a person;
(2) World View: cancer affects the way a YAC chooses to view their world; and
(3) Self Expression: having cancer exposes needs, wants and desires for a YAC.
For the conjoined experience the subthemes are divided two ways:
(1) Current links: the relationships already existing in a YAC's life are altered in some way; and
(2) New links: new connections form as a result of having cancer as a young adult.
*It is important to note even though there are clear, well-defined overarching themes and subthemes, there is a vast amount of overlap and interrelated components between these.
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I welcome any of your comments and thoughts.
Nikki
Statement of Results: The Lived Experience of Cancer and Young Adults (aged 25 - 44 years) in Australia
This phenomenological study described the impact that cancer had on the lives of thirteen young adults with cancer (YACs), to provide new knowledge and understanding about the issues that affect this population, and to help inform and shape appropriate cancer-care support services for this age group. There were a broad range of personal factors that defined the experience of cancer for a YA. In some cases, the immediate and long term implications were related to the severity and varied backgrounds in the biological factors of their cancer, yet in others, it was indicative of unrelated and more elusive factors. Two main areas of discussion emerged which enabled the development of two essential themes* for YACs:
1. Personal experiences.
2. Conjoined experiences.
A personal experience includes aspects such as the way a YAC uniquely characterises and feels about their cancer and the manner in which they choose to place it within their lifeworld. This area is related to issues of 'themselves' such as the fear and emotions felt when diagnosed, how a YAC views their life and surroundings, and how the values for a YAC might change after having cancer. A conjoined experience on the other hand suggested the way that cancer may alter existing relationships for the YAC, or the way in which new connections formed as a result of having cancer. It is this second theme that sets young adults apart from children, adolescents and older people with cancer, as for example, with the fact that YACs tend to have extended relationships and interactions with other people such as partners and work relationships. In addition to these main themes, a number of sub themes were identified.
For the personal experience, there were three subthemes that emerged:
(1) Impact: cancer has an immediate effect on the YAC as a person;
(2) World View: cancer affects the way a YAC chooses to view their world; and
(3) Self Expression: having cancer exposes needs, wants and desires for a YAC.
For the conjoined experience the subthemes are divided two ways:
(1) Current links: the relationships already existing in a YAC's life are altered in some way; and
(2) New links: new connections form as a result of having cancer as a young adult.
*It is important to note even though there are clear, well-defined overarching themes and subthemes, there is a vast amount of overlap and interrelated components between these.
----------------------------------------------------------------------------------------------
I welcome any of your comments and thoughts.
Nikki
Tuesday, February 26, 2008
Go to this link for all Young Adult Cancer wroldwide related stuff....
Hi guys,
Planet Cancer have released a new and very funky web-based platform for Young Adults with cancer. This is where I will now be doing my blogging plus adding heaps of other stuff especially for Young Adults with cancer in Australia.
http://myplanet.planetcancer.org/profile/nikki
Check it out... click on the link above, when my page comes up.... scroll down and find the Australian Network group link and click. this will enter you into all the Australian related discussion topics, plus provide you with info about my project and lots of information.
See you on PLANET CANCER....
Nikki
Planet Cancer have released a new and very funky web-based platform for Young Adults with cancer. This is where I will now be doing my blogging plus adding heaps of other stuff especially for Young Adults with cancer in Australia.
http://myplanet.planetcancer.org/profile/nikki
Check it out... click on the link above, when my page comes up.... scroll down and find the Australian Network group link and click. this will enter you into all the Australian related discussion topics, plus provide you with info about my project and lots of information.
See you on PLANET CANCER....
Nikki
Wednesday, January 16, 2008
recent update for YA
Hi guys, just a quick progress report on the YA project so you can see where I am up to...
- This year (2008) I am doing honours year at uni to research the needs of YA diagnosed with cancer aged 25-40 years. (Currently tossing up the idea of extending the age to 44 years. *** I am interseted to find out who thinks people 40+ with cancer have similar issues to the 25-40 years ... or do you think their life issues and interests are possibly more related to older people (age 50+)?). I am leaning towards including the 40+ age group... I have asked many of my friends who have turned 40, and they have answered that they would like to be included as they want to live life to the fullest, just like us younger cancer survivors.
- Produce a report from this research study to increase the information from this age group.
- This report I hope will help me to gain funding to run a comprehensive web-based support service for YA,
- and run some retreats - possibly up here in beautiful Byron Bay (where I live).
- Working with the cancer council on setting up a YA discussion forum.
- Scheduled to present the YA issue at the Cancer Council of NSW's RAN 2008 Conference.
...thats about it for now...
I will endeavour to keep you posted on any progress, until then drop me a line or email me your thoughts and ideas!
best Nikki
Monday, September 10, 2007
Bereaved people who have had a family member or loved one who died from cancer - your top 5 priorities
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Thursday, September 6, 2007
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
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Family & Carers - top 5 priorities
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Cancer Patients - your top 5 priorities
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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:
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!
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
Wednesday, August 22, 2007
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
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
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