What wld you like health professionals to understand re emotional/ psychological fallout from BC?

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Comments

  • RomlaRomla AdelaideMember Posts: 1,903
    Ian Olver is interested in psychoncology so here’s hoping.
  • RomlaRomla AdelaideMember Posts: 1,903
    Here’s some information about psycho - oncology for those newly in the know like me.

    https://en.wikipedia.org/wiki/Psycho-oncology
  • FlaneuseFlaneuse BrisbaneMember Posts: 820
    @kmakm You're in the ideal place and headspace to do it ! xox
  • Beryl C.Beryl C. Member Posts: 149
    Romla - thanks for the reference. I'm of the opinion that this topic could be a focus for Beacon - particularly information on psycho-oncology, in 'easy speak' language.
  • kmakmkmakm MelbourneMember Posts: 7,337
    Do what @Flaneuse?!
  • kmakmkmakm MelbourneMember Posts: 7,337
    OMG @Romla...

    "Routine distress screening throughout the cancer process (e.g., diagnosis, treatment, survivorship) is crucial to identifying individuals who are already struggling with symptoms of depression or anxiety or for identifying those at risk for psychological issues related to cancer. Historically, communication about psychological adjustment was lacking between patients and providers regarding topics related to adjustment to diagnosis, living with cancer, living cancer-free in survivorship, or transitioning to end of life care." (Wikipedia)

    I do not think "routine distress screening throughout the cancer process" has made it to the BC world...

    One of my oldest and dearest friends is a professor of psycho-oncology. She's a world leader in the field.
  • FlaneuseFlaneuse BrisbaneMember Posts: 820
    @kmakm Make a submission to the mental Health Royal Commission.
  • kmakmkmakm MelbourneMember Posts: 7,337
    @Flaneuse Ah!
  • RomlaRomla AdelaideMember Posts: 1,903
    Hold that thought @Flaneuse and @kmakm - we all need to think about drawing attention collaboratively to these issues.In a way we are lucky in that we have access to the blog to share and support each other - am not sure that this type of vehicle is available to those with other cancers .Though I do wonder how many  bc people know of it as you basically need to find it yourself.
  • SisterSister Adelaide Hills, SAMember Posts: 4,164
    I did have this forum pointed out to me - I can't remember now if it was at Breastscreen or at the surgeon's rooms.  There's been a few people that I have mentioned it to - some responses are positive while other's are really anti.  I do remember that I stalked for a little while.
  • kmakmkmakm MelbourneMember Posts: 7,337
    Don't worry @Romla! I'm not remotely qualified to do any such thing, wouldn't know where to start, would never presume to speak for others and barely have the time!
  • RomlaRomla AdelaideMember Posts: 1,903
    @kmakm I don’t think submission writing would have the same impact if however ,like you have done already, we  speak about it publicly/privately when appropriate .

    To a degree we tend to hide this part of our life and we need to talk about it a bit more openly .There are many of us and it could make a difference .Maybe  someone might hear and have a mammogram or find the blog or feel less afraid of their treatment path / life post treatment.

    Its not about “ the new normal” but about normalising a part of life.
  • Marianne_BCNAMarianne_BCNA Administrator Posts: 245

    Hi everyone,

    Thanks for sharing the difficulties you have had with receiving the acknowledgement and support for your physical and emotional needs from first being diagnosed right through your whole experience including the ongoing sequelae of cancer treatment especially with AIs, the ongoing emotional impact, sleep disturbances etc . Our State of the Nation report that we published this year based on interviews/surveys with over 13,000 people around Australia raised very similar issues to what you have raised here including the need for communication training for healthcare professionals working with cancer patients. 

    Here's the link to it if you haven’t already read it.

    https://www.bcna.org.au/media/6656/sotn-report-lowres.pdf

    As a result of our findings there are a number of advocacy issues we are focusing on in 2019.

    1. To increase the number of breast care nurses, particularly metastatic breast care nurses and especially in rural areas.

    2. To increase the number of Medicare subsidised allied health appointments from 5 to 10 (so if you require counselling this would be in addition to the appointments you are entitled to through a mental health plan).

    3. With funding from Cancer Australia we will continue to develop the My Journey online tool so that it will provide those who have completed hospital based treatment with a comprehensive range of tools and information to help manage your ongoing psychological and physical care needs according to your preferences and inform you about helpful programs and services. 

    We'll keep you posted on progress in these areas and will probably ask for your assistance at some stage. 

    And finally, for those of you who haven't already seen it, you might be interested in the webcast from Plan B which includes a presentation from oncology social worker, Carrie Lethborg.
    https://www.webcasts.com.au/planb/

    Actually, I have one more link - the Australian Cancer Survivorship Centre may be of interest to you
    https://www.petermac.org/services/support-services/australian-cancer-survivorship-centre

  • RomlaRomla AdelaideMember Posts: 1,903
    Thanks @Marianne_BCNA. I’d like to add the major importance of this blog to all of us at each stage of the “journey”.Just wish I’d found it earlier as it would have helped a lot during some dark months.
  • Marianne_BCNAMarianne_BCNA Administrator Posts: 245
    Thanks @Romla. There is now a direct link from our new My Journey online tool to the network. We are hopng that this will alert more people to the network at time of diagnosis and make it easy for them to join.  We have already noticed an increase in new members as a result. If you're interested you can go to https://myjourney.org.au/ to have a look. It's a great resource and this is where we are planning to include comprehensive info, resources etc regarding survivorship. 
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