Here Goes
Comments
-
Medical receptionists can be ferocious gatekeepers. Persist. Ask to speak to the surgeon.2
-
@TabooGal u definitely deserve at LEAST 1 day to process and cry. Thinking of u - we are all here for u xoxox2
-
0
-
Don't let the door person get in your way. You have an absolute right to those records, tell her you want them. From now on ask for copies of everything--make it a matter of course
Costs for you might be an issue in Albury Wodonga. The cancer centre is very pretty, but it is not a public facility. You can get your radiotherapy bulk billed there now--which is a significant saving--oncology services, should you require them, are something else altogether. There are options for that if you get into trouble financially but they require a bit of running around.
If you require more extensive surgery, consider going to Melbourne for it. It would be worth asking your surgeon if they are a qualified breast surgeon or a general surgeon with an 'interest' in breast surgery. There is a difference and it is an important question if you end up wanting reconstructive surgery. Hopefully you won't, but from my personal experience of BC in Northeast Victoria and Southern NSW, you need to ask a lot of questions as you do not always get the full picture or get offered the same services that you can access in the metro areas. Sentinel node tracking is an example of this--there are very much more sophisticated ways of doing that than running a hand held Geiger-counter over your armpit.
Sorry, not trying to frighten you, but start with the questions very early and consider any snootiness about delivering answers as a huge red flag.
1 -
@TabooGal
Here's a link that might give you an idea of surgeries and help you to formulate questions. This is from the BCNA website and a chance to explore the site more
https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/types-of-surgery/
and this one for when you do know what type of Breast Cancer you have, yes there are many types
https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/
Take care and there's also someone on the forum any time of day or night so hopefully it will be a go to for you when you need info and remember no question is silly
0 -
Hi @TabooGal,
Looks like the girls have given you a whole heap of warmth and information already.
I remember getting my results. It was three days before my twin daughters 18th birhday. It's still gives me the shivers thinking about it. The doctor kind of just pointed to the results with the underlined "highly suspicious for metastatic cancer".
Your whole world goes to shit in less than a minute. The foggy haze and fear creeps in. It's so normal. Scream, yell, shout cry whatever you need to do. I Dr googled myself to death that weekend. Don't do that! (We know you will)
I remember being too scared to ring up and get the CT results as I already knew it was in my lymph nodes (that's where I found the lump, not in my breast) so could only imagine the worst.
The short version is the CT and bone scan was clear, so yay. I spent a month chasing around the breast lesion as I was opting for lumpectomy so we needed to find the bugger.
I had the lumpectomy and full node clearance. There were 5 positive for BC. With the pathology back, I now had a plan.
6 weeks after surgery I started 6 mths chemo. There really was no option with that because of the node involvement.
4 weeks after chemo I began 30 rounds of radiation. I am now almost a year since active treatment finished.
Get your results, no matter who says what and take notes. I found taking my breast care nurse to appointments was easier than having family there and dealing with their emotions. She was also invaluable at explaining things that i forgotten to even ask.
I just wanted to let you know, you will get through, you will be ok. One step at a time, one day at a time. Everyone is here for you. We all get it.
XOXOXOXOXOXO3 -
@kmakm I could tell she was being a gatekeeper. She said she would call me back after talking to surgeon about my inplannon rod. Thankfully I made contact with the other BCN and she is working at the Surgeons Office on Wednesday. She is going to ask about the rod on my behalf. She is also going to make contact with me on the day of my surgery next week.
@kiwi_angel I think I've cried enough tears for now. I keep a pretty private life because of my anxiety with work being my only real contact with the outside world. I felt guilty for not going to work, then the worry about finances become overwhelming but I know I just have to take things one day at a time.
@soldiercrab Ive emailed my super company to see if they can give me any information on accessing my income protection. Its not a lot of money only $950 a month as I only work part time, but it would be a relief to know I can access it if I do get too sick with treatment.
@zoffiel Thank you for the information about the Cancer Centre in Albury. I had no idea it was totally private. A relief that radiotherapy is bulk billed. My surgeon is a Breast Cancer surgeon as well as bowel cancer. Speaking with colleagues who have dealt with him they were all very impressed. Just a query. Is the radiation therapy done at the CC or in another part of the Albury Base? My Surgeon is treating me as a public patient and doing so has still managed to get me into surgery within 2 weeks of seeing him. Is the oncology team only from the Cancer Centre? These are questions I will probably ask my BCN. Its the fear of the unknown that leaves me shaking. I am one of those people who will drive somewhere the day before just so there are no surprises when I attend the next day. This insane need to know every step in advance is my enemy in everyday life and will be now too. I am even sitting down now working out budgets if I am unable to work at some stage.
@iserbrown Thank you for those links. Am reading as much as I can but struggling to focus the past couple of days. My usual escape is burying my nose in the Outlander Novels. I think I have read the last 2 pages 3 times. Which isn't all bad as those who know the Outlander Series, you can never get too much of Jamie Fraser ;P
@kezmusic Thank you so much for your kind words. I have to try and keep calm until the results from my surgery are back. I expected everything to following suit within days, eg radiotherapy etc. I have this feeling that I want this thing growing in me out now and zapped now! But I forget its probably been there awhile and when I didn't know what it was I was calm.
So I got online on the weekend and site in Australia called Plus Sized Bras and decided to spoil Thelma and Louise. Hoping the size I ordered fits. Thelma and Louise are so big I have never really had good fitting bras and I have permanent dents in my shoulders. I wont ever be getting wired bras again and have found some lovely non wired, front opening bras. I got an email to say they were dispatched today.
We've decided to call my lump Brad Pitt (or Brad Titt?). Brad will only have a week now snuggled with Louise then he is being evicted!
Thank you all for your support and advice
6 -
The Oncology business in Albury is private, they are installed at the CC. If you need chemo, which we hope you won't, you will need to pay for your specialist appointments but the chemo itself has no charge as you are admitted to the hospital for that procedure. You do have to pay for any drugs you take home (don't buy them at the hospital pharmacy, they are cheaper at a discount chemist) It's worth making noises about equity of access to cut the specialist oncologist fees if you can't afford them, but good luck with that. I ended up using the public oncology service in Shep last year, but that is a long story which I probably can't tell here. Suffice to say, one experience with private oncologists in 2006 was enough for me. Mind you, I can be a raving pain in the arse, so the feeling was probably mutual
Radiotherapy is at the Centre which opened in 2016. The company is also private, but there is a cross border government initiative where the gap between the medicare rebate and the fees are covered. That is a huge bonus as previously it was stump up about 6 grand, go without or relocate to Melbourne for the duration, The people there are lovely and it is a modern facility with all the bells and whistles and things generally run very smoothly. They seem very accommodating with people who are juggling work and treatment. Once you get going you are only in the machine for a few minutes so planning for a bit less than an hour per treatment is about right unless there are technical problems but they will keep you well informed about that
Check your super and see if you have income protection insurance--it's a default with many policies and will pay (usually) 75% of what ever wage you were on when you set up the policy unless you have increased it over the years; most of us forget to do that. There is usually a 90 day withholding period, but depending on your treatment this nonsense can take 12 months. Hopefully you will not need that either, but you are not the only one who has the rat wheel spinning when anything new that needs worrying about rears it's head.
Once you get the hang of things and start keeping good files, much of the uncertainty diminishes. The real problems come up in the early stages when the goal posts can move very quickly. You case, like very one else's, is unique and all anyone can really help you with is the navigation once you know what course you are sailing.
3 -
@TabooGal or anyone else in a similar situation, if you have to come to Melbourne
https://www.thinkpink.org.au/the-living-centre/
Have a read of the above website - they offer accommodation for regional patients who are suffering financial hardship
There maybe other organisations doing similar, worth a hunt around the internet if you need it
0 -
@Zoffiel Thank you so much for all of that info. I just pray I can continue to work through all of this.
@iserbrown what a fabulous service think pink offers. I have bookmarked that site for future reference0 -
@TabooGal - or should I say mo caraid - I also bury myself in Outlander - which book are you up to? I'm on book 5 - a breath of snow and ashes. I became obsessed with the TV series then after I finished watching season 2 I started reading the books - now I'm ahead of the TV series but still can't wait for season 4!
Absolutely love Thelma, Louise and Brad - so important to keep a semblance of a sense of humour through all of this shit - you'll find there's a lot of laughs on this forum, in among the tears and fears.
Absolutely no question that you need to get those reports from your Dr, as others have already said. Going to and fro to different types of specialists I've found that sometimes they haven't received everything from each other and it's a great idea to carry them all around in a binder like @sister suggested.
If you have to let the Lite 'n Easy go - could you maybe treat yourself to just getting their dinners? When I was on L&E I found that I could duplicate many of the breakfasts and lunches myself - like the toast and jam, cereal portion or the lunch sandwiches - for much cheaper, but having those dinners in the freezer was the most handy part. I have a funny story about L&E - the first time they delivered to my house they buzzed the intercom and when I asked who it was, the guy said 'It's Lite and Easy' - when I opened the door I was very cheeky and said 'oh, there's only one of you - so which one are you, Lite or Easy?' - we had a good laugh
3 -
Love Outlander, but only the tv show so far. Must read the books!0
-
The books are amazing! And Jaime is MUCH sexier in the books 1
-
@Eastmum How freaky is this. I'm up to the same book! They are my escape! Lizzie has just had her unusual handfast. Trying not to give too much away unless you're not there yet! I love the TV series and hope they go to the end. Diana Galbadon is working on #9! Jamie can park his boots under my bed any day
@kmakm I highly recommended the books. 8 super thick books so far3 -
I just started that book Jenny! I've had a bit of a Netflix binge period but I'm starting Chemo tomorrow and intend to get lost in Outlander while I'm sitting there. I am loving them all but I find that book 4 was a bit slower than the others so I hope more happens in book 5. Do you know Diana wrote the first book about 20 years ago! I also follow her on Facebook - she's very generous with her fans.0
