FRUSTRATED

Though I am not far into this bc everyone is right. I'm not sure which nurses I saw on my first visit my brain was still mush. Most of my info has come from this site. And having a sister who was a community nurse. And a best friend a nurse also they get the info If I ask. 
THANK GOODNESS FOR BCNA 
i don't know what else I am going to need down the path as the surgery is planned etc in February and the after surgery treatment etc. 
i wont blame the nurses its more the under funding. We are one in a very big case load. For each of them.
MAYBE in our pack there could be a flyer we can give to our GPs with list of the most needed and a link to their section of this site. Just a thought. 

Hey Kath! I have an indefinite and its been 5yrs now but they havent advised I need another one yet. Ohhh who knows! Like we need to worry about that seriously!!! LOL 

I just checked today if I needed a new referral for my breast surgeon as coming up to 12 months...and tbey told me no...not needed....we keep you for 5 years.

@Share a giggle??? I laughing fit more like :) its so very true....

@"Soldier Crab"
I know!  Makes it even more confusing, doesn't it?  Which reminds me -- for anyone who hasn't caught up, we did make quite a big update to the Financial and Practical Assistance fact sheet in July this year, so there's quite a bit of information in there about the different financial schemes available (PATS, Utility relief schemes, financial counselling, community assistance organisations etc.).  If anyone would like to have a look, here's a link to the PDF on the BCNA website: https://www.bcna.org.au/media/3658/bcna-financial-assist-fact-sheet.pdf.

@Di_BCNA
 another important thing is  that every state/territory has different rules. 
Lympodema financial help is different depending on where you live. 

@Cate64 that is odd, maybe it depends where you go and who specialists are? Dont know, my surgeon is private and at a private hospital. X 

@Deanne
Thanks Deanne -- I think you're right. Navigating the health system is a constantly frustrating exercise in trying to find out what you don't know and what you need to know.  I think it's a great reminder to not feel silly about asking questions all the time, or being embarrassed to HAVE to keep asking.  I know I hate feeling silly when I have to ask lots of questions -- it's something I'm still working on! :smiley:

I'll make sure I flag that section in the My Journey Kit information guide as needing review and we'll keep an eye out for other places for this information.  Thanks again to everyone who has raised it here and made suggestions.

@Di_BCNA
My feedback would be that this info about Care/Management Plans needs to be in as many places as possible. We are all different in when this might be needed and in how/when we access info. Not everyone has a breast care nurse (I never have had any contact) and my GP was not very good with anything about this (only after I asked). I found out from reading posts on here and then googling for more info. 
I guess I also never saw myself as needing something like this. Thought I could take care of everything myself. But I have benefited twice now from these Plans. First to have access to a  physio a couple of months after I finished treatment. She told me to get one actually, when I first contacted her for an appointment.
Then again 2 years down the track when I wanted help with bone density issues. Again the facility I contacted told me how to organise the Plan.
This network has been my best source of information and I nearly always find things on here just when I recognise the need. There is so much learning takes place when you are first diagnosed but that learning is ongoing and I still find my circumstances and needs changing now 3 1/2 years after diagnosis. I never knew anything much about who or what was available to help with recovery, side effects etc.
I imagine there are a lot of people out there suffering because they simply don't know where to access the help they need or even that there is someone who could help. So, yes put it out there in as many places as possible.  :)