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

Romla

Ian Olver is interested in psychoncology so here’s hoping.

Romla

Here’s some information about psycho - oncology for those newly in the know like me.

https://en.wikipedia.org/wiki/Psycho-oncology

Flaneuse

@kmakm You're in the ideal place and headspace to do it ! xox

Beryl C.

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.

kmakm

Do what @Flaneuse?!

kmakm

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.

Flaneuse

@kmakm Make a submission to the mental Health Royal Commission.

kmakm

@Flaneuse Ah!

Romla

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.

Sister

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.

kmakm

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!

Romla

@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_BCNA

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

Romla

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_BCNA

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.