Who is in charge of my care?

Thanks Robyn,  that sounds exactly like me, to the letter.  I will be having my chemo at a private day hospital and hopefully they have breast care nurses there.  I find that good nurses have a calming effect on me and the hospital that I went to had fantastic nurses.  I'm the same with the surgeon.  Doesn't want to see me until the end of January and hopefully I will be well into, if not finished chemo by then, hairless as a billiard ball, and full of attitude (haven't lost that yet).

Cas

Thanks Julia,

I did get the My Journey kit even before my surgery.  The Cancer Council have been fantastic, I've been and borrowed a wig and some hats and scarves from them.  I phoned their 131120 help line twice and twice got men who got upset when I interrupted their speil to ask questions.  I was not in the mood to be told off at that stage so I hung up...twice.

I didn't know about free bras from Berlei but I'm going to go and have a look.  Thank you.

Cas

Thanks Deb,

You would think that I was at Innaminka or somewhere close wouldn't you?  No, I am on the Gold Coast.  I was operated on at Pindara Private Hospital.

I phoned my surgeons office today and they said "you've seen our breast care nurse".  You can phone her any time (she's rarely there).  No, would you like to come and see her or would you like her to come and see you.

Fortunately I like the surgeons receptionist and I had a good chat with her.  She said some people don't need a breast care nurse because they just go and return to their normal lives.  I then told her that I had pruned all of my hedges yesterday with electric hedge shears  lol.  She said to me, what do you need a nurse for then?  I then said OK, but what about exercises and physio.  She said, Carolyn.  What do you call pruning the hedges 4 weeks after surgery?  Exercise? 

So I've been told that I'm fitter than a mallee bull for someone who has just had major surgery.  I'm going to zip my lip now and go and do my homework while I wait to go to the oncologist on Wednesday.  Heaven help him is he is running late :P

Cas

We had our surgery at the same hospital.  You must have missed seeing the physio, and the lovely woman, Christine, from the Cancer Council, who had an array of pamphlets etc. on where to go for whatever you needed.  The nurse told me when she would be calling, and she saw everyone in 1C who was post-surgery. (Maybe only on certain days of the week).

Your GP is the link who ties everyone together and gets copies of your reports from everywhere, so stay in touch regularly.

Your surgeon should have a nurse you can contact when you need information or checkups, or have concerns about anything post-surgery. The surgeon will also refer you to an Oncologist, who then sends reports to your surgeon & GP.

The Cancer Council is a mine of information - and so is Bel!

Don't wait for your GP or surgeon to contact you - ring them and ask for a schedule.  Probably not much will happen until you see your Oncologist in January.  It is normal to have a break after surgery before chemo starts so don't get upset and worried.

This is a good time to check out a physio (OM if you want massage), check in with your GP, and get organised before chemo starts with all your dry mouthwash & toothpaste (Biotene), crystal deodorants, freezer meals, etc.

The Cancer Council might be the best place to start - they know it all.

Michelle xx

• GP He just gave us the news.
• Surgeon was next and she was very helpful, explained everything that would be done, handed me the paper work and organised which hospital to book into.
• Breast Care Nurse didnt show up until after the operation and then was my sense of humour and solid base for all my questions
• Cancer Council was the first place I rang, locally and had a rant and cry to and they always know who to ring, and what free services are available
• Community Nurse, I tracked down and organised.  They will come to your house for free if you need. Once I made contact they visited me, or contacted me all the way through until I finished Radiaiton.  I phoned them to come to my house and help me with an automatic injection I had to give myself.
• Oncologist & Rads Dr, same person, they organised that side.  Receptionists always booked appointments.
• My Journey Kit, Berlei Bra, and small pillow, and a bag to carry a drip in all given to me and organised via Breast Care Nurse.
• A physio even visited me in hospital originally and then I consistently booked into a Lymphodaema Physio for my Cording and compression sleeve as preventative for Lymph.
• The McGrath Nurse, get intouch with that organisation too.  She was brought into Launceston right at the end of my Radiation, so I was well over my concerns  by then
• Cancer Council in Launceston have a Counsellor for emotional issues, and one for medical based concerns.  I needed help as a Triple Negative to think about my future in a positive way, and to not focus on the past - look forward.
• I just kept ringing every one and asking.
• I even phoned the Cancer Council to ask for phone numbers for funding for a cleaner, which I wasnt eligible for
• Supermarkets deliver groceries to your home too
• There are vouchers for transport, accom, there are community pick up service etc
• The My Journey Kit, has all the info you need to all the phone numbers, all the advice, its for free, order one at bottom of page.
• Oh and I gratiously used all the free COUNSELLING provided.
• Just keep asking us here on the BCNA you wont be alone, and we can suggest great idea, give you emotional support.
• There are also volunteers via the Cancer Council who can link with you on a phone in your age group and circumstances, as a buddy system.

I live in Launceston Tasmania, and we are often thought of as the little place below Australia that doesnt have much.  If you have breast cancer here, you are adopted by a family full of love and support and every medical facility you need.  How lucky i was to have moved to Launceston.  I wonder where you are living Cas.  They sound a bit blaze about it, and if I were you Id start making lots of phone calls, and pool together as much help as you can find!  XX Bel

• GP He just gave us the news.
• Surgeon was next and she was very helpful, explained everything that would be done, handed me the paper work and organised which hospital to book into.
• Breast Care Nurse didnt show up until after the operation and then was my sense of humour and solid base for all my questions
• Cancer Council was the first place I rang, locally and had a rant and cry to and they always know who to ring, and what free services are available
• Community Nurse, I tracked down and organised.  They will come to your house for free if you need. Once I made contact they visited me, or contacted me all the way through until I finished Radiaiton.  I phoned them to come to my house and help me with an automatic injection I had to give myself.
• Oncologist & Rads Dr, same person, they organised that side.  Receptionists always booked appointments.
• My Journey Kit, Berlei Bra, and small pillow, and a bag to carry a drip in all given to me and organised via Breast Care Nurse.
• A physio even visited me in hospital originally and then I consistently booked into a Lymphodaema Physio for my Cording and compression sleeve as preventative for Lymph.
• The McGrath Nurse, get intouch with that organisation too.  She was brought into Launceston right at the end of my Radiation, so I was well over my concerns  by then
• Cancer Council in Launceston have a Counsellor for emotional issues, and one for medical based concerns.  I needed help as a Triple Negative to think about my future in a positive way, and to not focus on the past - look forward.
• I just kept ringing every one and asking.
• I even phoned the Cancer Council to ask for phone numbers for funding for a cleaner, which I wasnt eligible for
• Supermarkets deliver groceries to your home too
• There are vouchers for transport, accom, there are community pick up service etc
• The My Journey Kit, has all the info you need to all the phone numbers, all the advice, its for free, order one at bottom of page.
• Oh and I gratiously used all the free COUNSELLING provided.
• Just keep asking us here on the BCNA you wont be alone, and we can suggest great idea, give you emotional support.
• There are also volunteers via the Cancer Council who can link with you on a phone in your age group and circumstances, as a buddy system.

I live in Launceston Tasmania, and we are often thought of as the little place below Australia that doesnt have much.  If you have breast cancer here, you are adopted by a family full of love and support and every medical facility you need.  How lucky i was to have moved to Launceston.  I wonder where you are living Cas.  They sound a bit blaze about it, and if I were you Id start making lots of phone calls, and pool together as much help as you can find!  XX Bel

I think it is a team thing, you will be seeing an Oncologist regularly, the frequency will vary depending on your case and stage of your treatment.  At the hospital they meet regularly to review your individual case with various medical experts.

I went to RPAH in Sydney and although they do have BC nurses, they did not choose to involve themselves in my case but were there to call if I had a question.

I also saw a breast surgeon who did my operations and follow up care after.

I saw both private and hospital physios over time, but had to ask for this to be done.

You can phone the cancer council  131120 who are staffed by knowledgable caring people.

You need to get a free My Journey kit from this site(main page I think) this has invaluable information.  You can also apply for free bras from berlei.

We have all been there before you so any questions are ok.

Hope you feel a bit better with some more information,

Julia