Help BCNA Online - Melbourne focus groups

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Jess_BCNA
Jess_BCNA Member Posts: 475
edited November 2016 in Community news and events

Hello all, jess from BCNA here.

BCNA is currently working to revise and redevelop our website and we need some help.

We wanted to ensure that the information and services available to those affected by breast cancer is easy to access and understand.

To help us do this, we are looking for people to attend a focus group in South Melbourne for approximately 90 minutes.

You do not need to be a computer wiz to attend, but we would love to hear from you!

Who are we looking for?

Women diagnosed with breast cancer in the last 12 months (18-49 years of age)
Focus group: Tuesday 27 May at 12.30 pm

Women diagnosed with breast cancer in the last 12 months (50+ years of age) Focus group: Tuesday 27 May at 3.00 pm

Partners and other family members of women diagnosed with breast cancer Focus group: Wednesday 28 May at 6.00 pm

Women diagnosed with secondary breast cancer Focus group: Thursday 29 May at 12.30pm

If you or someone you know is able to assist BCNA by attending a focus group, please let us know by Monday 19 May, by emailing bcnaonline@bcna.org.au or phoning 1800 500 258.

THANK YOU for taking the time to consider this opportunity.

~ Jess

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Comments

  • mona63
    mona63 Member Posts: 237
    edited March 2015
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    seems to be assumption that if you have bc then you dont work or not on those days..but if you are a partner than a 6 oclock session is offered? I would ask that bcna just be mindful of these particular 'messages' ie woman holding a sign 'im lucky i survived''--i dont feel lucky i survived--there are all sorts of good reasons why im still alive...not the least the survival rates are pretty good..i know its hard to capture everyone's experience.

  • Blossom59
    Blossom59 Member Posts: 12
    edited March 2015
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    Mona makes a good point about attendance to this focus group, if this involves computers, I would love to see a survey sent to all members, especially if there are 11,531 online members, and make it basic with yes or no answers.  The last 3 surveys I have participated in have been worded in such a way that it hard to grasp what data could possibly be achieved from the survey. 

     

     

  • Amy
    Amy Member Posts: 233
    edited March 2015
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    It seems a shame that this will be limited to only people living in Melbourne.  As Blossom says maybe an online survey could capture a wider audience?

  • wendy_h67
    wendy_h67 Member, Dragonfly Posts: 466
    edited March 2015
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    I think it would be a good idea to revise the web site as I always seem to have trouble finding the right spot to send a message.

    I live in N.S.W on the central coast.  As Amy says it not that easy for people not living in Melbourne to attend these events.

    Wendy67 

     

     

     

     

     

     

     

     

     

     

  • morry
    morry Member Posts: 22
    edited March 2015
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    I am also a member of the Inspire Web Site from America.
    Every day I have messages sent to me on the latest topics on Advanced Breast Cancer . There are messages, questions, helpful hints and I am also amazed just how informed the ladies on this site are.
    Just ask your question and the ladies reply immediately .
    Perhaps we need to consider following some of their ideas when planning the BCNA Web site.
    Contact on a regular basis is so important for us.

    Perhaps we could have some input by email .
  • Mozzee
    Mozzee Member Posts: 23 ✭
    edited March 2015
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    I'm with you Wendy. I find it confusing which is why I don't comment much. When I have done a post I don't think I have had any comments or responses. Maybe it's because I don't know how to use the site??

    Cheers. Kerrie
  • Karen_C
    Karen_C Member Posts: 93 ✭
    edited March 2015
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    Hi Jessie,

    Here is my response to Sonia.

    Hi Sonia, I see you are about to get into another phase of your "chronic condition". I see what they have installed for you. In may case I had 4 tumors, 3 in my brain and one in my spinal cord. Good news I now only have one left which is close to a vein in the cerebellum region. Last scan shows that this is shrinking. I was diagnosed with brain mets in October 2012, so I sincerely hope that you have a good outcome as I have thus far. My treatment has been a combination of surgery in the cerebellum area in February 2013, which was then treated with stereo radio surgery in April 2014. I had radiotheraphy on the tumor on in spinal cord which has now gone!!! My neuro radotherapy Doctor, Claire Phillips who works out of Peter Mac is fabulous. Thus far I have not needed whole brain radiotheraphy. I would ask more about the use of stereo radio surgery. I had virtually no side effects but believe this varies on where the tumors are. Also stereo radio surgery is only suitable for small tumors. Very important to have regular scans to have your disease managed. Hereunder are details of my medical team who are just fantastic. Dr,. M. Chipman Oncologist (primary carer) Victorian Breast & Oncology Care Ph: 9417 4666 Fax: 9417 4498 Email: drmpc@****Neurosurgeon Mr. Patrick Chan Ph: 9866 6688 Fax: 9866 6288 Email: info@patrickchan.com.au Radiologist Oncologist Dr. Claire Phillips Peter MacCallum Cancer Centre Ph: 9656 1111 Fax: 9656 1400 All the very best with your treatment. I know that its very scary when you are told that you have brain mets. I thought that my life was over, but here I am better than I have been for many years. If you want to have a chat give me a buzz on 0420458898.

     

    Karen Cowley

     

     

     

  • mona63
    mona63 Member Posts: 237
    edited March 2015
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    Dear karen. You have got some useful experience and info there but seems to be posted in a different space: hope someone computer savy can redirect your message!

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