diagnosed 05/08

Dear LynnT,
I'm wondering how you are doing? Hope you are going well.
The distances you need to travel surely make things difficult for you.
Did you find other forums? Do you recommend any?

thank you all for your comments, yes I was assertive with the 5 min appt and said that I wouldn't be attending, they arranged for a local GP to tell me. I live in a very small town outside of Casterton, we have about 140 residents and Casterton has about 1500, I have lived here 6 1/2 years. I have access to a Breast Care NP in Hamilton which is about 60kms away and we have spoken on the phone, I attended Ballarat Hosp yesterday, left about 0515 but went to the wrong place lol oh well, I am geographically challenged as I keep telling people who dont really believe or understand. Nevertheless I was only 5 mins late for 1000 appt but didnt see the specialist till about 1140 - I was so cranky I almost walked out, I could have left home later & not been so anxious about leaving on time etc ... anyway I stayed, somewhat reluctantly. The specialist is nice but I was so tired, I agreed to participate in some research involving a magsteel insert (to locate the cancer for the surgeon) & magdye (?) - special dye injected by the surgeon and over the next couple of weeks it will make its way to the sentinel nodes which are affected (maybe) by the cancer. This entailed more procedures, the dye was just injected but the magsteel insert had to be guided in place using ultrasound, then a mammogram to ensure its position, then I attended admissions.
So operation is scheduled for the 01/09/20 and I have to be there at 0700. I am going to call and ask about that ... plus I have to isolate for 2 weeks prior and get a covid 19 test one week prior to the op. A long day as I arrived home about 1830 ... was so grateful and happy to be home. I am thinking though that after this post I should be checking out the other forums - cheers and good luck to all.
 

Best wishes for all your appointments @LynnT. It sounds like you may spend more time in the car travelling than in medical appointments. Is it possible to stay with friends closer? As others have said you may wish to take a friend or support person with you to appointments as there is a lot of waiting and a lot of information to take in. Once dates are set for start of treatment you will find time goes much faster. Big hugs

Hi @LynnT These are difficult times for everyone, but the challenges of a new diagnosis coupled with distance issues are something else altogether. 
If you don't want to drive 3 hours for a five minute gig, now is a good time to stick to your guns. The rules have changed, so if you feel you have the mental stamina, please push for a more reasonable solution. Do you have a breast care nurse who could sit with you for a phone consult? That someone else would 'prefer' things are done as they always have been doesn't quite cut it now. Gps can be a godsend, but they are also the most time poor of all our health team and, for some reason, don't always get the professional respect from specialists that they deserve. They cant wait around for a call that doesn't come. Ask whom else may be suitable.
Don't get too concerned about managing after surgery. Many of us have handled being on our own and if the washing doesn't get done, the dog doesn't get walked and the floors aren't mopped for a couple of weeks the world won't stop. You may well find you cope much better than you expected to. Good luck . Mxx

Hi LynnT sorry to see you here.   This forum has some wonderful people with lots of advice to share.  Sending you hugs xxx

HI @LynnT,  

My diagnosis was 30 April, grade 3 invasive BC. I cried for 2 weeks  then had surgery  2 wks later and started chemo 3 wks after that.

 It is so hard this waiting and wondering what's ahead. It is such a ride and emotionally hard to keep up with everything as it all moves along so fast.

Everyone's cancer is different and ok the higher grade sounds scary but much can we done and treatmentwill be availablefor you. We are all here to support you and it is great you are here.

I hope telehealth can be sorted when you need it. I have only had telehealth with my GP but I am in Brisbane. 

The pathology will determine your treatment.  Itvis very complicated and individual treatment follows that. My cancer was Her2 neg but positive for oestrogen and progesterone. My treatment involved surgery, chemo (currently in progress for 13 rounds), then I have radium daily for 6.5 wks and then hormone therapy.  All up about 6 months of chemo and radium. Hormones for yrs to come.

Try to keep busy and distracted as much as you can till your surgery. I found surgery a relief from the stress of it all. I didn't read google but stayed with the information with BCNA. I found meditation and walking helpful to relieve my stress.

You may need some help at home after surgery. I couldn't lift anything. What support do you have to help you. You may need a special friend who can be there to help you. I didn't tell many people. I choose only those who i thought would support me. A couple of those haven't turned out well and I had to leave them behind so they aren't part of my treatment etc. 

Stay in touch with us all here and let us know how your appointment goes if you would like to. We are here for you. 

Sending big hugs xxxx

Hi @LynnT - so sorry to hear your news - but welcome to the forum that no-one really wants to join.  I still recall my diagnostic date - 5.1.18 (it seems SO LONG AGO now!) ..... I'd had a call back in Oct & it was Dec before I finally got a biopsy done just after Xmas, so was sweating on the results over Xmas/New Year for the whole shebang!   Then the next year in Nov had another callback & didn't have the biopsy til Xmas Eve, so another Xmas/New Year stuffed!   grrrr. I've now brought my 'yearly check' forward so that Xmas won't be impacted this year!!  ;) 

Whereabouts are you?  We may have members nearby who you could chat with & in 'normal times' even catch up for a coffee!  Just knowing there are others nearby is very comforting.  I am regional NSW and went to Sydney for my surgery & up to Port Macquarie for Rads - and they have a Rotary Hostel attached to the hospital (like a motel but better) and I was able to stay there for the whole 4 weeks at. minimal cost.  The Gov picked up most of the cost - and saved me a daily 3hr drive, as I am the driver in the family.  You can also claim for petrol and other accommodation costs via the Isolated Patients Transport scheme that all states have.  You'll need to download the appropriate forms & get your GP and Specialist to sign off the first one - after that (usually) you can process them online.

Depending on where you have your Rads, we may have members nearby who may be able to look after your poodle.  Whack up a pic here: https://onlinenetwork.bcna.org.au/discussion/15588/what-pets-do-you-have/p15

If you can access a Breastcare Nurse, she should be able to take a lot of the load off your shoulders - and just someone knowledgable to chat to.

That is ridiculous if they expect you to drive 3hrs for a 5 min appt.  I've recently had a teleconference appt with my Onc - I meant to record it, but forgot!  DUH!  It worked out fine.  (It is a good idea to record all your meetings on your phone, as it is very easy to forget or miss important details, whilst mulling over what had just been said previously!)   Also - are you able to take someone with you as well?  An extra set of ears are invaluable. My SIL came with me, as my husband has dementia & wouldn't be much of a help!  :(    In the past, we've also had Medical Skypes with my husband's surgeon who is in Sydney.

The waiting is the pits - it affects you EVERY TIME you have a check etc.  :( Keeping busy, doing things you really love should help pass the time - or even cooking up meals & freezing them so you have a good stockpile when you go home from hospital - talking of which - depending on your surgery, you'll need someone to drive you home & possibly 'care for you' for a few days as you won't be able to drive or do reaching up or heavy lifting for a little while (tho I did drive home as my procedure was quite small compared to others!  DON'T TELL ANYBODY!)

Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!).
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner' and if into your garden
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
, a Garden post as well!! 
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
And we now have a Fishing post, as that is one of my passions!
https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics

Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it will only scare the pants off you!

All the best with your ongoing appointments & getting your surgery date confirmed.  We have some posts here on what to take with you too, to make it 'easier' on you.  
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

Take care xx

Welcome LynnT. So sorry to see you here - we all arrived here with great reluctance but find great support and encouragement to get through. The waiting sucks and it’s so hard when you have distance to deal with - you say you live alone(plus furry friend) I hope you have support? Many ladies on here will give helpful advice - I just wanted to send a hug and tell you that on the whole it gets easier to deal with as time goes on and you get through the yuk waiting at the start. Xx

Hi LynnT. I’m new to this too. Waiting is the worst. It definitely sounds like you need to find a doctor who is more considerate of your needs. Is there a McGrath Breastcare Centre where you are? I’ve been contacted by mine already and they are a fantastic source of support. They might have some alternative solutions to your current teleconferencing problems.