Diagnosed 2 Days Ago

Hi there @Raich 

What great support there is in this group. Good luck with it all. I was diagnosed 30 April  surgery, mid May as nd started chemo 4th June and will finish that end September. 

I understand the need to want to control the dialogue of your breast cancer. I guess we loose control of lots of other things and this is something we sometimes need to balance that loss of control.  

I told my parents and one sibling and a few close friends. My diagnosis was in lockdown so no one was seeing me at the time and now I have chemo and no hair as nd we still have covid so I am not out much. My family and friends all were told I didn't want my diagnosis shared. They all knew how important that was for me. I am a private person. The majority keep my confidence but sadly my own parents absolutely had a field day telling  everyone in their retirement village and long lost relatives. Not what I wanted at all. I got a couple of calls from people I only tend to see at funerals and never heard from since. I was shattered at their betrayal (history of not respecting my boundaries) as they were asked not to do this on 3 occasions but they pushed on. I can't speak freely to them at the moment. 

Why do tell you this......be careful who you trust. Make sure you are comfortable with who you tell and be clear as to whether you are happy for them to share that news.  Good luck with the next steps.  

@Raich I’m a teacher too - and have had my conservative surgery now 4th day radiotherapy. I only told principal and one admin at my school. Exhausted sick leave and LSL now on income protection. 

I have a BIG BOX that everything goes in ..... not that you get physical copies of xrays etc any more .... but for all the reports etc.

Here is a link I put up re questions to ask (specifically after surgery, but some may relate to pre surgery ...) and when you see different specialists ...
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

take care xx

The first weeks after your dx sure are an absolute whirlwind. Take notes, jot down questions as they occur to you because you will forget at an appt when your brain is in overload. I found keeping a record, digital or paper, of all tests, results, treatments etc with dates and taking it to every appt to be a lifesaver as you get asked the same questions over and over. I still get “When did you finish/start chemo/radiation/Herceptin/letrozole, when was your last echocardiogram etc etc a year down the track and would have Buckley’s hope of giving any sort of answer without it. A couple of times I forgot it and sat there looking like the kid who hadn’t done her homework copping a question 😂 Things will settle down once your treatment starts thank goodness. Good luck with results etc 😘

Appreciate all your messages and positivity xxx Thank you 🙏 

Terrific, @Raich - make sure you use your phone to record your initial meetings with Surgeon, Onc & Rad Onc Plus your pathology results with surgeon - it is easy to miss bits whilst pondering one bit & miss the next bit ....  

I was lucky, I went to Sydney for my first appt with the surgeon on his first day back at work from Xmas Holidays (10 days after I was diagnosed) then had the Sentinel Node test the next day & surgery the day after. I stayed at my brother's place & my SIL came to all appointments with me - she is a terrific 2nd set of ears & asked intelligent questions, whilst it was all a bit of a blur to me!  But I have the recordings!  We stayed with them for a few days afterwards as well & every other appointment since!  They were just terrific.  I even drove home afterwards!  ;) 

Take care & all the best for your CT results xx

Good luck with your appointment @Raich. I agree that sometimes it’s nice to just sit and reflect on public transport 🙂. It’s a good opportunity to go over what has happened so far since your diagnosis, and mentally prep for the upcoming. Hoping you get good results Xx

Things are happening so quickly. CT scan this morning at the Regional hospital, got a call from the clinic in Perth and my appointment with the doctor is 9am Friday. Booked a bus ticket - not eligible to fly as it’s a consultation and I don’t want to drive. Usually I love a road trip but just want to sit and do nothing this time. Will take my knitting and listen to the rest of Little Women on LibriVox. Hoping to stay with my brother and see if my mum can tag along to the appointments... will cab it to the clinic though,  as her driving terrifies me 😬🥰

Thanks @arpie! Uke zoom get togethers sound awesome! I’ll let you know 😊. 

Woohoo!  Another uke player!!  :) We almost have enough now for a bcna uke group, @Raich ! We could do a zoom get-together!   I am currently doing 2 x zooms a week with my group! Let me know if you’d like to join in!! I put the songs on screen so everyone just sings along and also use pre recorded audios of the group to sing along to, as zoom only allows one person singing/playing at a time. ;)  (There are a LOT of terrific youtube live or zooms you can join from home. UkeLenny is one that is awesome! He also puts up the songs on screen to sing/play along.) 

Good that you are on to PATS already ... most medicos over here have never heard of it and I have to explain it every time!  Grrr

@JJ70 is another member in WA ... from Fremantle, who is a fierce advocate of making sure ALL Australian women are tested from age 40 (not 50 as in most advertising over here.)  WA is one of the few states that advertise ‘from 40’!

Take care xx