Who is in charge of my care?

Yes I agree.  The services just don't get it do they?  I mean I know that they are all overworked, there are FAR too many diagnosis of breast cancer these days.  But, if I were to list a few of the discrepancies that I've seen they would be:

Very poor manner of pre diagnosis education of the possible outcomes. I was told by the Breastcare Australia nurses and doctor that it looked like a cyst.  I had to wait a week to get mammogram scan results, then had to have a biopsy and wait another week for a result.  A doctor came into the room and said you've got breast cancer.  Now it will need to be operated on and you will need to go and get a referral from your GP to a surgeon.  No thank you, no kiss my a...e, no how do you feel about the fact that you have cancer?  It was diplorable.  (I didn't go with that surgeon thankfully)
As a private patient I was rushed into an appointment with a surgeon, still no information on what I might expect, waited 10 days to see him (did go to another one but didn't like him).
Surgeon spent 15 minutes of a 20 minute consult reading my biopsy results and writing in my file, then had a feel, gave me my options and what he recommended then booked me in for surgery on the Friday of the same week.

His receptionists were the only ones who gave me printed info and a little pillow and bag that I still don't know what I am supposed to do with it.

The list goes on and on.  Someone needs to be appointed AT DIAGNOSIS to manage a patient's care, both emotionally and physically.  The Americans do it and do it well. 

Too tired to type any more right now.  I think I need to write an article for one of the magazines instead with a good bit of research thrown in.

Cas xxx  (thanks Carol, I don't feel alone in here)

Yes I am talking about Dr Gault.  If you haven't met him you should be pleasantly surprised.  He is softly spoken, very pleasant and you must pay attention.  He has a Scots?  Welsh?  Irish accent (not sure which)  I liked him on sight after having gone to another VERY EXPENSIVE surgeon first.  Don't be too worried about the breast care nurse.  Dr Gault's lovely receptionists Jo and Rhonda spoke to me yesterday.  I was telling one of them about not having all the attention that other ladies had told me they got, then we started talking about gardens and I said I had pruned my hedges on Sunday.  Dead silence.  Then, Carolyn!  Why do you think you need a nurse or a physio if you are capable of pruning hedges and mowing the lawn?  :)  I never thought of that.  I found the zip and used it  hahaha...
Yes, I'm happy to be part of a get together.  I live at Arundel but I can get to almost anywhere given notice. :)

Cas xx

You are most welcome to share my soapbox Paula.  Any time!  Cairns :)  I have a cousin up there who rehabilitates turtles.

Yes 5 months is atrocious but it isn't a great deal longer than what you would wait for on the Gold Coast.  You wouldn't know that we are one hour from Brisbane.

My oncology appointment is tomorrow at 2.30pm.  I have to go to work till 1.30 so I won't have time to be dwelling and waiting.  I'm just looking forward to having some idea of where I'm going next.

Cas xxx

Seems like some things haven't changed in 7 years!

I had no breast nurse , Mcgrath nurses only started later that year. the social worker in my private hospital in sydney tossed the pink bcna pack on the far corner of my room then disappeared before I could ask any questions.

I got my my jorney kit too late for it to be of much use. 

Things are much better now with all the services available if you know who to ask. this site and the improved my journey kit great.

However my surgeon who saw me on Saturday at 7am organised further tests on Monday and tuesday then operated on me on Wednesday, was part of a multidisciplinary team. The oncologist saw me in hospital and insisted all the family including teenage sons were present to hear that Mum would need chemo. By the time that started it had changed form 6 to 8 and later once pathology finally back with herceptin for a year as well.

did have a nurse visit but that stopped once the drains had been removed. surgeon insisted I be measured by each of the 3 local hospitals in case I develop Lymphoedema and I attended a prelymphoedema series of sessions and got an off the shelf garment to wear for chemo. swelling meant wore for about a week or my 3 weekly cycle.

5 years later inspite of exercises and garment use developed "full blown" lymphoedema requiring month long program of daily therapy and bandaging.

got back at the hospital when Dad in there saying hope an old man got better service than I had. He did although he refused some of the options suggested to him.

your pink sister

Carol

Hi Cas,

When you see your Oncologist on 20th, you will probably be given a list.  Chemo can give you a dry mouth and nose, so they suggest a mouthwash such as Biotene, and Biotene toothpaste as well as a very soft toothbrush. For the nose, Nozoil spray was brilliant - a tiny dispenser that makes all the difference.

You will definitely need that thermometer - if your temp is above 38o you need to call them or go to the hospital in case of infection.

Yes, you would have missed both as you were in and out over the weekend.They must have fitted you in asap. If you have a portacath you will love it - especially if you are on weekly infusions as I was!

Hang in there, Cas.  It will all fall into place. (Your exercise was harder!)  Michelle xx

Thanks Paula,  the breast care nurse is the surgeon's wife.  She doesn't visit at all (I'm told).  She didn't ask if I had questions just sold me a bra and insert, took the original dressing off and replaced it with a breathable one and that was it.  I saw her once in my post op visit to my surgeon.

You know, I would have thought that the hospital would want to do some follow up of it's patients.  I had to send an email to them to tell them about being left in waiting rooms for 5 hours.  I found out afterwards that their policy is no more than 90 minutes in a waiting room in any one day.  5 freaking hours and I had to have a major hissy fit so that they would take me to a ward (to wait another 2.5 hours for surgery).

This flat out or not moving at all manner of patient care within the cancer framework is seriously flawed.  There needs to be facilitators who can smooth out the bumps and hollows.  Someone who can say, right, you've had a huge shock from your diagnosis.  Now lets sit down and work out what your options are, who is available for you to see, surgeon, oncologist and let's talk about what to expect and allay some fears and misunderstandings.

If there were such a person, even if it is a group situation such as at the local cancer council, I think a lot of people would be a lot happier than just being railroaded into choosing a surgeon in a hurry (I was berated by my mother for not wanting to stay with the first one I saw), then shunted onto the first surgery list as an afterthought, pushed through the hospital system and out as fast as possible and then virtually abandoned.

The oncologist who I am seeing was recommended by my surgeon.  When my surgeon's receptionist phoned the oncologist's office to make an appointment for me, the options were 8th November or 22nd November.  8th was out because I was booked to be elsewhere so I've waited.  My appointement has been brought forward to 20th because the oncologist is so booked out on his normal clinic day that he's had to arrange a second clinic.

You know we aren't waiting for appointments for tooth cavities or chicken pox here.  We have cancer, and common as it might be, it is a life threatening illness.  I'm just so appalled at the system and not just for me.  There are women out there waiting months on the public hospital triage for the first consultation for breast cancer.  This is not right.  We're in Australia not in the highlands of PNG, not hanging of an iceberg in Antarctica and we can't look after our sick and dying in peacetime.  God help us if we ever face war or disaster.

Cas (gets off soapbox before she falls and splits stitches)

I think I was skipped over in 1C because I came in on Friday, operated Friday night, and allowed home on Sunday at lunch time.  I guess the Cancer Council and Physio don't work on weekends.

My oncology appointment is this Wednesday 20th Nov.  I have visions of having a portacath put in either Friday or Monday (my surgeon's oeprating days) and starting chemo next week (sooner the better).

Freezer meals I can do :)  We ate precooked Pad Thai, Spag Bol and Healthy Choice for a week after my surgery :)  Dry mouthwash?  How does that work?  I'm going to have to read the book on Chemotherapy or ask the oncologist what I need.  Someone told me I would need a thermometre so I bought one.

I didn't know you were in the same ward (at a different time).  Nice hospital isn't it?

Cas

Thanks Bel, yes they are blase.  I found the Cancer Council (face to face) to be the best people I have come in contact with yet.  I'm on the northern end of the Gold Coast.  Can you believe that?  I didn't know about the My Care Kit until 15 minutes ago, thanks for that.  I didn't know that I could have my groceries delivered.  Thankfully my mother lives close and she's my transport.

I have heard of the McGrath Foundation but never thought of contacting them.  I'm going to look a bit further into all of your suggestions.  I've managed to keep the cleaning up myself and mow the lawn so I wouldn't ask for help there.  I've just started doing some ironing today (until my arm got heavy).

I think I'm more concerned that I'm not going to be well enough for several days if not a week after each chemo round.  I may have no trouble at all but being a born and bred organizer I feel a bit helpless and prone to having meltdowns because I can't do what I normally WOULD do.  I hate asking for help.

Cas