Just reading some of the old and recent posts. There are so many of us it's scary as to why. I'm also thinking I'm in the worst area in Australia for support. I have never been given options or choices, nor a treatment plan on paper. Like so many of you with helpful oncologists and surgeons. I've just been told I need this and that and have followed the instructions. Not once has any treatment been suggested as an option. I have not even been given an official diagnosis. I have read my pathology results from my first operation but haven't seen my 2nd pathology results. From what I can decipher my cancer is much nastier than they have told me hence why the previously invisible medicos are now rushing me to heal so I can start chemo. And this I will do on Wednesday if my dressings come off tomorrow. But of course I will need to have my blood tests to confirm. My oncologist doesn't want to see me before chemo...so boy is he going to have a backlog of questions by my 2nd chemo. I haven't even found out why this type of chemo as opposed to another. It drives me crazy. My GP is fab but of course she is not a specialist in breast cancer so there's lots she cant answer. I am her first bc patient. My nurse at the GP is super too even though she's never had a bc patient before me. So I spose I'll just plod along this week to their tune and hope for the best. I better not miss out on my physio appointment. It's been the only relief so far. I'm curious. Does anyone know the role of the McGrath breast care nurse? If so have you received any help or information from them regarding coordinating treatment or services.

Hi again Nicole, I am from Hobart so probably have a similar situation re stretched healthcare resources. I was initially told I would need an immediate mastectomy unitl I suggested neo chemo. I have been obssesed with doing my own research (thankfully) as u know I now may only need a lumpectomy. I just dont think they have the resources to know your case as intimately as they should. You should be able to get your pathology report from your GP but as you probably know, these can be scary when you have to rely on dr google because there is no one else. I didnt find the Magrath nurse scheme very useful because they cant answer your medical questions and they kept trying to steer me to wigs and breast prostheses when I wanted to use cold caps ( i still have my hair too) and get reconstruction. Perhaps they are more useful during the surgery recovery. I hope your appt goes well today (relatively speaking of course-if all goes well you can start your chemo..yippee!) Tanya

Ha ha. My GP hasn't received my first report yet. She's still waiting for the results from my wound swab on 7/11/14 to know what antibiotics to give me. Luckily she didn't wait . Nicole x

Just wanted to let you know what I was told as to why some of us have 2 different types of chemo. I was told that changing the chemo drug can result in a better strike rate against the cancer (if some don't get knocked off by the first type then the second one might knock them better). Also I was told that it is easier on the rest of your body to change chemo drugs and therefore have different side effects. It is your right to receive a copy of your pathology results and have them explained to you. Sarah is right though about not trying to interpret them using Dr Google. I found it helped me to get through the treatment when I understood exactly what was being achieved by each bit but not everyone finds this helpful. My oncologist was the main person who explained my treatment in detail but we did have to ask and she said not everyone wants to know. Hope you find AC a liitle more bearable. We all respond differently so fingers crossed for you, it's about time something got a bit easier for you! Deanne xxx

Can't sleep! | BCNA Online Network

19 Replies

DebsBigSister
Member
11 years ago
I writing this not as a fighter or a survivor but as the Big Sister of a BC fighter (with secondary now in other places). Take it from me if the last 3 years have taught me anything it has been that this disease is heartless, it preys on the rich and the poor and the weak and the strong and just when you think you can't take anymore a sliver of a rainbow appears and makes it all that treatment worthwhile. My sister and I talk almost everyday (and she is 1300k'ms away) and I can tell when she has not so positive results from her monthly check ups because she will text me....it is very hard for me to understand why she wont just ring but I have to respect her wishes, when SHE is ready she calls. The best information I recieved was from the BCNA - it was a pack of information which included information for relatives of BC fighters including what to say, things to do, things to offer, believe me some of these where so basic but I had just honestly NEVER thought of them, as a result when I went with her while she had treatment (3 hours from her home and everyday so 6 weeks away from home)) I filled her freezer full of homecooked food she loved so it was just a case of her taking it out and re-heating, I called her my fuzzy little gumnut when her hair started to regrow (we loved Snugglepot and Cuddlepie as kids) and I just wet washers and kept her cool when she was unwell after treatment. It is so very hard for loved ones when people just close down and don't want to talk but you must also remember, sometimes we just dont know what to say, nothing that we can say will make you better or stop you hurting so sometimes it is just easier to say nothing. My sister has recently changed Oncologists and is so much happier with her new Doc, if you are not happy with the information you are getting a second opinion cant hurt, from what I have heard the nurses etc in Orange are wonderful and I am sure they would be willing to chat and guide you in the path of getting all your information and feeling comfortable with your choices, and please remember if you need to chat there is always this page, .......Good luck with your treatment journey as it begins keep that fighting spirit going....xxxx
DebsBigSister
Member
11 years ago
I writing this not as a fighter or a survivor but as the Big Sister of a BC fighter (with secondary now in other places). Take it from me if the last 3 years have taught me anything it has been that this disease is heartless, it preys on the rich and the poor and the weak and the strong and just when you think you can't take anymore a sliver of a rainbow appears and makes it all that treatment worthwhile. My sister and I talk almost everyday (and she is 1300k'ms away) and I can tell when she has not so positive results from her monthly check ups because she will text me....it is very hard for me to understand why she wont just ring but I have to respect her wishes, when SHE is ready she calls. The best information I recieved was from the BCNA - it was a pack of information which included information for relatives of BC fighters including what to say, things to do, things to offer, believe me some of these where so basic but I had just honestly NEVER thought of them, as a result when I went with her while she had treatment (3 hours from her home and everyday so 6 weeks away from home)) I filled her freezer full of homecooked food she loved so it was just a case of her taking it out and re-heating, I called her my fuzzy little gumnut when her hair started to regrow (we loved Snugglepot and Cuddlepie as kids) and I just wet washers and kept her cool when she was unwell after treatment. It is so very hard for loved ones when people just close down and don't want to talk but you must also remember, sometimes we just dont know what to say, nothing that we can say will make you better or stop you hurting so sometimes it is just easier to say nothing. My sister has recently changed Oncologists and is so much happier with her new Doc, if you are not happy with the information you are getting a second opinion cant hurt, from what I have heard the nurses etc in Orange are wonderful and I am sure they would be willing to chat and guide you in the path of getting all your information and feeling comfortable with your choices, and please remember if you need to chat there is always this page, .......Good luck with your treatment journey as it begins keep that fighting spirit going....xxxx
June1952
Member
11 years ago

I am glad you are feeling loved and supported by ladies on this great network. Grizzle any time you need to ! I do think it is easier to vent on here and then get on with the day to day things. 'A problem shared is a problem halved', they say. When others connect with you and your story it helps you - but it also helps others as they then feel they are not alone.

We may be able to survive but at what cost to us and our families, let alone the daily grind of treatments and side effects ? A young fella we know left Oz to work on breast cancer research in the US (and only breast cancer) in the 1980s. Still no closer to a cure ! ..... and if it were men's bits ..... ?

I agree that many family members and friends, whilst saying they are supportive, just don't want to talk about BC. I do think it means that they have to think of their own mortality and how they would cope if it were them.

Please keep on chatting when you have something on your mind.

Big cyber hugs - have a peaceful day.

Summer :-)
Sarah54
Member
11 years ago
You will get there my dear we have no other way but fight the head on battle. You are now a surviver and congradulations. We can win the war, I am confident of that. Australia is so ahead of many countries with everything connected to Breast Cancer. Good luck and chin up and best foot forward.

cyber hugs and keep in contact

Sarah54
nicole_h
Member
11 years ago
Wow! I just want to say thanks to all of you. You have no idea how much it means to me that you respond to my grizzling let alone agree with me. I find this cancer and my treatment consumes my every thought and can't and don't want to concentrate on anything else. But find that its the last thing my husband and kids want to talk about. Even friends try to avoid the subject. So it's nice to talk about it with anyone even if you are all strangers in cyberspace. Love to you all dealing with your own set of shitty circumstances. Nicole x
Sarah54
Member
11 years ago
We have enough on our plate , why are we waiting all the time. Let's change things, anyone know how. I am furious that Nicole is in this position. I asked the oncologist receptionist for my results as my last visit to medical oncologist meant I left with my head spinning . I forgot to pick up print out but next visit I asked and she said "it's my job on the line if I give you YOUR results without permission" I accepted this but for f&*ks they are my results. What's the secret? Deep breath I am so over the system.

Sarah54
Sarah54
Member
11 years ago
We have enough on our plate , why are we waiting all the time. Let's change things, anyone know how. I am furious that Nicole is in this position. I asked the oncologist receptionist for my results as my last visit to medical oncologist meant I left with my head spinning . I forgot to pick up print out but next visit I asked and she said "it's my job on the line if I give you YOUR results without permission" I accepted this but for f&*ks they are my results. What's the secret? Deep breath I am so over the system.

Sarah54
Blossom59
Member
11 years ago
Hello Nicole, I wish I was near you, you sound like you need a lot more support than what you are receiving.

If you read my post in ANXIOUS you will see that I also have not had a good experience with my nurse, in fact she was terrible, didn't contact me, then when she did it was the most unpleasant experience.

I have learnt to write down all my questions and I sit there and check them all off to make sure I haven't missed any, even if Onco is standing up hurrying me out.

I hope you find the answers you are seeking, sending you a big cyber hug.

Candy
Blossom59
Member
11 years ago
Hello Nicole, I wish I was near you, you sound like you need a lot more support than what you are receiving.

If you read my post in ANXIOUS you will see that I also have not had a good experience with my nurse, in fact she was terrible, didn't contact me, then when she did it was the most unpleasant experience.

I have learnt to write down all my questions and I sit there and check them all off to make sure I haven't missed any, even if Onco is standing up hurrying me out.

I hope you find the answers you are seeking, sending you a big cyber hug.

Candy
Blossom59
Member
11 years ago
Hello Nicole, I wish I was near you, you sound like you need a lot more support than what you are receiving.

If you read my post in ANXIOUS you will see that I also have not had a good experience with my nurse, in fact she was terrible, didn't contact me, then when she did it was the most unpleasant experience.

I have learnt to write down all my questions and I sit there and check them all off to make sure I haven't missed any, even if Onco is standing up hurrying me out.

I hope you find the answers you are seeking, sending you a big cyber hug.

Candy