Who is in charge of my care?

Hi Joy,

I'm so pleased that you are able to follow my journey.  I'm following people just in front of me as well and yes it is calming to know what goes on before you get there.  I have my first oncology appointment tomorrow morning and truth be known I'm looking forward to getting this part of my treatment happening so that I can get through and out the other side.  I have things to do and they don't involve breast cancer :)  I might assume that you've seen the same surgeon as me (at Bundall)?  He is just gorgeous.  I'm going to see Dr Tazbirkova in Dr Slancars rooms for Oncology.  I have only heard good things about her (Dr Taz).

Let me know how you are going and where you are at.  I'm also involved with a group on Facebook, lots of Americans, English and a handful of Australians.  All lovely people.

https://www.facebook.com/groups/saveherboobies/458614170910468/?notif_t=group_comment_reply

Cas

Thanks Tina,  I will just be very happy when I don't have to think about breast cancer any more until the next mammogram.  I've gone from upset to annoyed now and impatient and with my inherent lack of tact, the three are not a good combination.  Thankfully there are such nice people here who manage to calm me down and point me in the right direction each evening.

Cas (thinking about where Mt Warren Pk is.  Near Darra?  Going to google maps it)

Thanks Bel,  there are 4 women who have been fabulous so far but none of them nurses.  I will say that the nurses in the hospital were fantastic.

I've also met people who should NOT be allowed within 100 metres of a breast cancer patient.  Just appalling people who are too full of their own self import to be of any help to those who have this awful situation.

I feel that here on the Gold Coast, how you are treated is dependent upon how much money you have to throw around.  I don't have a lot and consequently I've been fed to the second or third best of everything (barring Pindarra Hospital which was average).  I'm really fed up with being treated like a second class citizen with a contagious disease (poverty not cancer).

I'm very close to packing up and moving back to the Hunter Valley or Newcastle where the people know how to be friendly and sympathetic. 

So now I wait to hear from my surgeon his better choice for an oncologist and I am going to my GP tomorrow morning to ask his advice as well.  I will shop for an oncologist until I find one that I am happy with. :P

I'm now not going to this particular oncologist.  His receptionist is more important to him than his patients.  After having to endure her incapabilitiy of running a medical profession diary for the past month and my complaining to the hospital they have now decided that they won't treat me.  (four letter words proliferating)

I'm not actually angry any more, I knew from the outset that I really didn't want to go there and I felt like I was being railroaded by my surgeon and my mother.  Well I am very sorry but I've always done exactly what I want to do unless it serves my purpose to do otherwise.

So, now I am waiting for my surgeon to finish his surgery and suggest another oncologist to me.  I wonder if I should find one myself and suggest that he refer me there.  I really would much prefer to listen to what my old GP recommends.  (he is a surgeon as well but semi retired)

Yes, my cousin has a fabulous job, she is doing a PhD in Marine Science?  Zoology?  something like that, her husband is a wildlife veterinarian and their daughter is doing vet science at uni also.  You never know what will meet you at the front door of their house.  They've had tigers, crocodiles, all manner of dogs, cats and horses  lol

Responsible for supplying the Breast Care Nurses to each area of Australia.  It would be interesting for you to discover what that nurses role is.  May be they have too many people to see, and cant manage the work load?  We here had a nurse that was provided by a Government Department before we got a McGrath Nurse.  Susan Schwabe of Launceston was outstanding in her role, she arrived at the hospital at the start with all the information, sense of humour and ability to organise what we could have for free, and access to the "My JOURNEY KIT" .  She also arrived at each Chemo appointment I had in hospital.  She got back to me each time I rang with a silly question, like "I know this isnt your area but......" and my angel.  They brought in a McGrath B C Nurse and replaced her position, she was designated an unrelated nursing role.  Some people are born to a job, with compassion, skill and professionalism.  That is Susan Schwabe, we await to hear if 6 months later, they have decided to give her that job back, no doubt all the Doctors have jumped up and down about losing her.  She is a unique nurse.  Good luck, and dont be shy to reach out for help.  We are all here, to see what happens next!

Thanks Michelle,

If they don't give me a list I will ask for one.  If the surgeon puts a portacath in I will ask him also to make a small incision and cut the end of the stitch that is just under my skin on my body but under my arm.  I can feel the thread and it keeps stabbing me and my arm.  

I hope I'm not on weekly infusions.  I need my brain for 2 out of 3 weeks for assignments AND I will be writing investigative articles so I need to be able to research. (or train my mother to)  I will know tomorrow hopefully.  I'm rather looking forward to meeting the oncologist (and being exceptionally pleasant to his receptionist)......pulls a face.

Cas xxx

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)