Heartbroken, but unbroken

Some good advice there @strongtogether.  I would definitely check out the financial side - maybe one of the things you can do for your wife so that she doesn't have to process too much (although that may be just what she wants to occupy herself with).  My health fund covered surgery, private hospital and chemo (plus the extras with oncology such as exercise, etc), but your fund will not cover radiotherapy.  However, in most cases, the public system, which I went with, is just as good as the private and I haven't heard too much in the way of extra care for the money.  The only thing I would say is that I had to ask for the Mepitel film and supply my own moisturiser, but you can buy a hell of a lot of moisturiser for a few thousand dollars.

@strongtogether I sent a reply to your message.  Just quickly in regards to finances I did a mix of public and private.  Surgery and chemo were private, my health fund pretty much covered the chemo except for a fee of about $30 for one of the anti nausea drugs.  I did however go public for radiation.  The only real difference with public/private radiation was that occasionally I had a longer wait in public.  However as I said, one day at a time, one foot in front of the other.
Paula xx
TNBC x 2 with a positive node and 8 years clear of 2nd diagnosis.

@kmakm thanks for your kimd words, and thanks for bringing up the finances side of it. To be honest we are so keen to move that we havent yet considered the money, but its going to come up. How does mixing and matching actually work? 
We live in Brisbane. I spent three years working at the Royal Brisbane and Women's Hospital (non clinical). She has spent her professional career in allied health, as a lymphodema specialist Physiotherapist. 
I know the hospital and I have spent more time in more parts of the hospitals across Southeast Queensland than most, but I dont know anything about the human body.
Not particularly relevant, but it is kind of ironic.
Anyway. We have supportive family and friends. We are strong and we are young. 

Talk to your wife's surgeon as he/she co-ordinates the treating team.  Say that you would prefer to go public for rads and ask for referral to someone in that system - if your surgeon isn't keen, ask why.  (I didn't know to ask about public/private but my surgeon was very aware of my financial circumstances and brought it up with me.)  Your wife will have a long term relationship with her surgeon and oncologist.  Unless tnbc is very different to other bc, she is likely to see her radiation oncologist 2 or 3 times in total...ever.  

I'm not familiar with Brisbane's facilities - others may be able to comment - but I haven't heard that private is any better with regard to equipment or treatment.  And from what I'm aware, there's just as much appointment shuffling and waiting in both systems but I guess that could be different in different places.

I think you said that you have a friend in a local radiotherapy dept - if you feel you can without prejudice, then ask that person what they think.

Happy to help @strongtogether. As your name implies, we're with you. I'm in medical admin when I'm in paid work. :)

Ask your breast surgeon to refer you to the public system for radiation therapy. They are the overall coordinators of your care. Some people are able to negotiate with the health providers to get an acceptable price. You could check with your wife's breast care nurse, she'd know the ropes locally.

@onemargie might be able to chip in with some wisdom if she's around.

How is your wife doing today @strongtogether? K xox

@strongtogether  - as with some of our members, I went private for surgery & public for rads.   I had a pretty big 'gap' in the private surgery (about $6000 including gaps in scans, meds over the last 18 monhts etc) whereas public rads was totally free.  I even stayed at the hospital for the month at the Lodge provided for patients & their families at Minimal cost (1.5hr drive each day, each way otherwise!)  So definitely ask about going public for the surgery as well.  Most surgeons work in both systems, at the same hospital!  My Health Provider NIB took care of the 'hospital costs' but not the surgical costs.  Ask THEM how much you are covered for, with the surgeon's fee.  They cover the bed and theatre costs - just not always all of the surgeon & anaesthetist!

All the  best with your decision making xxx

hi @strongtogether
Sorry I have not replied before now but been away on a break.... 

I am part of admin on a Facebook group for TNBC https://www.facebook.com/groups/1166665270079659/
ONLY Ladies can join it .... your wife might like that 

I am nearly 7yrs out from diagnosis with double mastectomy and chemo and rads 

Others have given you lots to think about and ask... 
Feel free to ask any questions. 

Soldiercrab

Thank you all for your comments and replies.
We have had some good news recently, with the PET-CT scan coming back clear. She had axillary surgery to remove the lymph nodes on that side, and once she is recovered we will start chemo. 
We feel a lot better, and we can see some parts of an overall plan starting to come together.
I am going to be coordinating the help of our support group of family and friends. Trying to keep them involved without putting too much on any one of them, especially at the start when everyone wants to jump in to help. 
They are good people. We are lucky to be in a good place with good friends. 

That's great news @strongtogether  and you seems super organised.    You will find a list on one of these threads ( hopefully someone will jump in here with a link)  on what is really handy to have on hand for those going through chemo.  Do you know what sort of chemo regime yet.   I was on TC regime.  
Everyone is different in their own reaction to chemo.  depends on type and dosage.   Some work part time through it were as others like myself couldn't at all.  I think some one wrote on here once that chemo just makes you feel grotty which is really apt. Doable but grotty.  But definitely check the list out as it gets closer to time.
All the best. xo

 

Hi @strongtogether. To save you being overwhelmed with multiple lasagnes, you might like to check out some apps such as the following. Could be handy! K xox

https://gathermycrew.org.au/