It's Not Me

Hi Narwood,

Firstly welcome to the Online Network. It's great to see you getting involved. If you are having any problems with using the Online Network just let me know I can give you a call to help out.

There is a big pink "post" button and there will be a drop down called "My blog" that's how you can share your post with everyone by writing a post from there. If you are looking to join a group we have both private and public groups. Just click on the group and you will see a "Join" button under your profile picture.

Here to help if you need.

~Ann-Marie x

Thanks everyone

My mum was also diagnosed 8 yrs ago and she came through ok, so hoping I will as well. I also have an identical twin sister who is freaking out thinking she is next. Her mammograms are clear - so far so good.

We haven't been tested for the BRACA gene (i think that is what  it is called) but I will ask the specialist when I see him /or her. Both my twin and myself have daughters so it is something to consider. I have also contacted the Australian twin registry and asked to be put in their breast cancer research project. We are already in their breast density one. 

Anyway i will try to relax until Tuesday and hope my experience won't be too traumatic (unlike the 6 biopsy's i had)- that was very difficult. . 

 

Hi Narwoo,

please don't stress about being in the public system. Even in the private system you would have had to wait because of Easter. I finished my 16 months treatment 9 months ago and was in the public system through Box Hill Hospital. I had a lumpectomy, 6 months of chemo, 33 radiotherapy sessions and 12 months of herceptin. I could not fault the care I received.  The staff were wonderful, knowledgable, caring and just the most amazing people. I made some wonderful friends with the other patients.  If you are open and honest with your care team, they will go out of their way to provide you with everything you will need.  Waiting a couple of weeks will not impact your outcomes and it will give your health providers the time to work out what your best options are. The waiting is just awful and all of us have experienced it. Unfortunately it is part of the process. One day at a time! I know we all always say this but it really is the best way to get through this. Hang in there. Karen xox

Hi Narwoo,

I too, am new to this and am learning as I go. Sorry you find yourself here, but at least you are on that same bumpy road with many others ... too many! I have no real words of wisdom for you, perhaps they will emerge along the way, but for now sleep when you can, pamper yourself when you can and surround yourself with people who love and support you.

Since my diagnosis, I have been more concerned about the journey than the outcome. Being welcomed into this support group has certainly helped and I'm sure you will feel the same.

All this waiting and not knowing is the pits. I think cancer treatment in general has not change much in that respect over the years.

Good luck with the surgeon's appointment. I'll be thinking of you.

Best wishes and hugs

San-Dee

Hi Narwoo

Sorry that you find yourself here but so glad you decided to reach out and post on this network. We have all been through what you are going through now and it is such a scary and sometimes frustrating time - especially in the early days when you are waiting to see doctors, have tests and get results etc. If you haven't already I would strongly encourage you to order the My Journey information kit from BCNA. It has lots of helpful information that can be reassuring even before you have your treatment plan. 

Like you my GP couldn't answer any of my questions regarding treatment even though she had breast cancer herself!! All that info has to come from the breast surgeon and oncologist. I have private health insurance but I still had to wait 2 weeks for and appointment with my surgeon! and another 2 weeks for surgery. I remember at the time it felt like years. Once you see these doctors things will start to happen very quickly. If you can, take someone with you to these appointments so they can act as a second set of ears.

And don't forget that we are here for you and to come on and post any time with questions or just to vent. This network has and is really helping me to get through this and I am sure it will be of help to you as well.

Take care, Nadine

Hi San-Dee and others

I am enjoying reading your comments. I have not been sleeping well and am up at 5am most days so looking for some support & info.  

Thanks for posting, your comments makes me feel less alone and I can relate to some of the things you are saying. This is my first post so not sure how this site works.  

I was only diagnosed on March 7 and am in no man's land (  or is it no woman's land) because I haven't yet seen the specialist but have an appt at the public hospital on Tuesday  22. It was hard having to wait 6 days for the biopsy results and then another 2 weeks for the hospital OPD appt and all that time not knowing what is going to happen next so it has been a very scary time. Have lots of questions but my GP was not able to answer them. Easter break coming up is not helping either as it was harder to get an appt. I now wondering if I should have had private health but I don't so can't change that now.

No fee - you'll find she will become your go to person as she can advise you when you're uncertain if you need to go back to the GP or surgeon or whoever

I'd be lost without mine - she is fab!

Hi,

 

That's wonderful you have had the support of your breast care nurse. I don't know what's going on with mine. I do have her phone number, but have avoided calling her. Don't want to appear pushy or needy, but it would have been nice to get some advice on how to cope with post surgery or pain. I have finally figured it out for myself. Hopefully my GP will have some words of wisdom when I see her tomorrow. Do we pay a fee for the breast care nurse? Maybe that's the issue!

Cheers

Hi did the breast care nurse give you her card?

Mine has been with me all the way. Only today she rang to check on me and enquire abt my next appointments with the Onc and Surgeon.  I was diagnosed April last year.

Good luck with treatment and settling in with your medical treatment team.

Take care

Christine xx 

Hi again,

The breast nurse was allocated to me by the surgeon/hospital. She called me before the surgery to offer some information kits and a soft post surgery bra, then said she would see me in hospital. She was there the day following surgery and was very nice, but I haven't heard from her since. As I said, I don't know what the protocol is here, so I'll talk to my GP on Friday.

It's a scary thing you are going through and the not knowing is the worst. I was fortunate in that once I saw my GP after Breastscreen, she called the surgeon for me and everything seemed to move so quickly. Now I am trying to get a grasp of the treatments ahead of me. I hate just sitting around waiting for the phone to ring ... I suppose that's one of the reasons I signed up for this site. 

So, if nothing else we can be there for each other, whether it is get information, compare notes, cry on each others' shoulders or to vent our fears and frustrations.

hugs

San-Dee