Triple negative

Apologies, @Sharonb58 ... re-reading my post - it doesn’t all make sense! .. I must have accidentally deleted some bits (as well as the spelling errors!). DUH!

The cancer centre at Port definitely has a dedicated Social Worker who may also be able to help out in other areas as well, eg if you are having financial stress as well  ...  I saw her a few times when I had my Rads there in 2018 and had a few hiccups when the wheels fell off .... 

They usually have the IPTASS forms there as you enter the waiting room to see the Oncs (on the wall) .... or just ask at the front desk for copies.  Usually your GP needs to fill out one page, the person running the trial should fill out the next page and you fill out the rest. Once you’ve done that, you can just submit online claims!  

The front page will ‘take’ several trips and you can add a 2nd page if you need to for more trips.  You can wait til the end and claim all in the one hit, or do them as you go .... probably less confusing to do the whole lot in one go, I reckon.... You can register and print off the forms here:
https://www.service.nsw.gov.au/transaction/register-online-isolated-patients-travel-and-accommodation-assistance-scheme-iptaas

take care, xx

Dear @Sharonb58 ,

from jennyss in Western NSW

Thank you arpie for your information! 

I'm from Port mac and go to Coffs harbour for clinical trial and I didn't know about being able to claim travel ...thanks so much !

I will be busy looking at all these links .. I just need to think and be a bit more positive. 

I really appreciate your advice x

Thank you so much !
I am seeing my breast care nurse tomorrow so will reach out to her. I have been going along fine but ( maybe reading too much online ) and it all just sounds so negative and has left me in a bit of a slump .
I know triple neg is going to be difficult but I have heard they have made progress in recent years with treatment.  

It's wonderful to hear that you are 9 years NED , I love hearing that ! I too will opt for mastectomy, I have only 5 more treatments of chemo immunotherapy then surgery 2 weeks after clinical trial finishes.

I look at it as one more day closer to being finished, just have to get a bit more positive!

Thank you so much for answering and leaving links . This is a wonderful way of not feeling alone in this journey xx

@Sharonb58
HI I am now 9 years since diagnosis and NED (no Evidence of Disease) 
I also help admin the Facebook group Triple negative breast cancer for australian and nz sisters https://www.facebook.com/groups/1166665270079659
we also have a stage 4 group https://www.facebook.com/groups/876955882827253
Happy to answer any questions for you. 
 as Arpie said if you need support with your mental health please ask for a mental health plan from either your Onco or GP 
Thanks Iserbrown for tagging me :smile:
is treatment easy  not really but it is doable... I always thought one more day towards completion of this brings me one more day closer to surviving this disease. 

I had double mastectomy my choice then 9mths of Chemo and 6 weeks of Raditation... 
Happy to chat with you

Hi @Sharonb58 I am not triple beg, but hope you are going well with the trial so far ... feeling nervous and a bit edgy with different things happening to your body is quite normal .. but if you find it becoming a bit overwhelming ... make sure you chat to your GP or Breast Care Nurse about seeing a counsellor.   They will be able to give you coping mechanisms ...  there should also be a dedicated Onc Socil worker who my  

I see your treatment is in Coffs ... do you live in town or do you have to travel to get there?  NSW has IPTASS to help with fuel and accomodation costs if you live away from major centres. You can add your town to your profile, then others locally may be able to advise you of local services that may help you xx 

Feel free to check this post out for general info on the blog... we even manage to have a laugh as well as showing off our gardens, pets, art and craft!!  https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care and all the best with your continuing treatment xx

I will tag someone that I think is Triple Neg
@SoldierCrab