SAHMRI Survey

Sister
Sister Member Posts: 4,961
If anyone is interested in taking part, SAHMRI are conduction research into the emotional and physical well-being of Australian women who have had breast cancer:
https://www.sahmri.org/population-health-theme/news-204/
It takes about 10-15 minutes to complete.

Comments

  • kezmusc
    kezmusc Member Posts: 1,553
    Thanks for that link.  I just did it.  Left a great long essay at the end of what should be included.  It's a good start though as long as something is actually done with the information.
  • Romla
    Romla Member Posts: 2,092
    Just did it - thanks for drawing it to my attention.FMC also has/had an online weekly course for people with breast cancer if anyone is interested.
  • Romla
    Romla Member Posts: 2,092
    The course is called Finding My Way.
  • arpie
    arpie Member Posts: 8,201
    Brain is dead ..... at the end of the survey & I can't think of things to put in that should be covered in the survey.

    I Have put in:

    Out of pocket expenses - especially that $500 of my pathology wasn't covered by medicare/health fund ...... do they think it wasn't required to show that the tissue wasn't cancerous?

    Insensitivity of Centrelink questions re inability to work - advising women to go off medication to go back to work - is plain disgusting, let alone DANGEROUS!

    What else should I add ..... we may as well cover all the bases with as many topics as possible?
  • arpie
    arpie Member Posts: 8,201
    edited July 2018
    OK ... thought of a few more:

    What is the impact of your treatment on your mental state?

    Have you broken down when things go wrong when navigating the Hospital/Followup system for treatment?

    Do you have access to easy transportation to hospital/meetings

    Is your partner supportive?

    Is your partner suffering from an illness themselves?  Is this affecting their ability to support you?

    Are your children supportive?

    Are your siblings/extended family supportive?

    Are your work colleagues supportive

    Have you had difficulties accessing funds from Centrelink when unable to work due to BC medication

    Can you access your superannuation for unexpected costs?
  • Romla
    Romla Member Posts: 2,092
    Do you have a support system that can help you ?
  • Sister
    Sister Member Posts: 4,961
    All good points - I commented (I think - God, where has my brain gone?) on depression and that it's not just related to body image.
  • Sister
    Sister Member Posts: 4,961
    I did suggest to them that they consider guesting on this site and they would get a lot of info on physical and emotional wellbeing.
  • kezmusc
    kezmusc Member Posts: 1,553
    I also put in the bit about costs of scans and numerous questions about the impact of different treatments both physically and psychologically for many years after, fear of recurrence, the inability to continue to work and how difficult it is to access super and centrelink support.  Pretty much a dozen things relating to the quality of life and for some, lack there of, after active treatment ends.  
  • Romla
    Romla Member Posts: 2,092
    @kezmusc I too would like to know longer term side effects of treatment - have been learning about them for radiotherapy the hard way.I also wish I was to,d I could blend treatment between private and public as I would definitely have done radiotherapy in the public system and saved some money as the treatment is no different.
  • arpie
    arpie Member Posts: 8,201
    To be honest, I didn't think there  were really that many questions about women's mental health and well being at all!!

    I think I'l go over it again - to see if I mis read any of the questions!!

    i was lucky @Romla - my rad Onc was in the public system and told me right up there were no charges.  I only went private with my surgery to get it done ASAP with no wait ... if it happens again, I will discuss going public with the same surgeon!
  • Romla
    Romla Member Posts: 2,092
    The problem with public surgery may be not only the wait but not having a surgeon of your choice looking after you from surgery thru treatment @arpie.
  • arpie
    arpie Member Posts: 8,201
    My surgeon ‘does’ do public and I would have waited about 2 weeks .... tho I had to pay $400 extra cos his hospital wasnt on my health care’s list .... and they only paid $300 of his surgery fee, leaving $3,000 out of pocket... plus the $700 mentioned + numerous other shortfalls with tests and biopsy plus the $500 not covered on my pathology fee, all totalling about $6000+.  Still haven’t received the anaesthetics fee.  Not going to chase it, either!  ;)



  • Romla
    Romla Member Posts: 2,092
    Wow I didn’t have anywhere near that  @arpie the expensive bits were bonescans etc ie tests