Can't sleep!
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.
Comments
-
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
0 -
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
0 -
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
0 -
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
0 -
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
0 -
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
0 -
I have read some of your postings - and with much interest.
I haven't had a very good experience with my breast care nurse. I think they are supposed to be able to provide information on available services and co-ordinate them but the physio she sent me to did not even know what cording was, let alone how to deal with it. Ho hum. Ladies seem to LOVE their Nurse or HATE them - if she sends them to a 'Look Good Feel Better' program, I guess that helps some ladies.
Like you, I had the pathology report from the Breastscreen biopsy but received no other. If you get onto the Jane O'Brien website (she is a surgeon at the Epworth Hospital in Melbourne) she has a great explanation as to how to read it. That is helpful. I found it way after I needed it, though.
My GP is fighting me on going off Zoloft - this is not good for Tamoxifen - so I am going off it VERY slowly anyway. He is VERY laid back, too laid back, but being in a rural area I am lucky to have a GP who actually speaks English! He has seen all reports but says there is nothing special - meaning nothing he has to deal with urgently, I guess. Last week I glanced at his pants and said "if it were men's bobbly bits ....." !! (leaving it open for him to think about).
My mastectomy was at the end of August and I am so 'down' at the minute. I feel very alone. I had a huge meltdown the other night and this has ruined any good in my relationship as he is just not understanding me at the minute. His mind is more on if and when I die and how that will affect him.
As to why so much BC - well, us proactive ladies have the mammograms and they can find it now. My Mother lived to 95 - who knows, she may have had it but they never found it.
Sorry this is a miserable posting but it may help for you to know you are not alone in thinking the whole system is a bit of a let-down at times, depending on where you live and how much money you have.
Keep as well as you can and good luck for this week. You will be in my thoughts.
Cyber hugs
Summer :-)
0 -
Hi Sarah, my oncologist is not a doc for talk plus all my questions arise after I see him. By the next cycle I have found the answers elsewhere. He just decides what chemo I need and prescribes it. Half my mental health problems are because I can't talk to him and waiting 3wks to find answers that are then so brief has sent me crazy.
Not this time. If I have questions about anything I can ask Rod, my to be radiotherapist, and if he doesn't know he'll find out for me.
It's been 4/9/14 since I've seen the chemo nurses but i remember they were nice. Didn't know that they could answer such questions. I'll try that and the cancer council too. Thanks.
Nicole x0 -
You too Summer. I'm glad I'm not the only one feeling abandoned by the system but I'm sorry you're out on a ledge too.
My husband has been hopeless too and very concerned about how he feels and his future. I've decided that I'd still rather have his help than go it alone. He still annoys me on a daily basis and is only helpful occasionally. Once or twice in 6 months he has surprised me and been thoughtful. It is for those times that I'll hang on to him for now.
Btw don't be sorry, be as miserable as you like.0 -
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
0 -
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
0 -
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
0 -
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
0 -
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
0 -
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 x0
