Breast Care Nurses
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Patti personally I have asked for assistance several times when I have needed it....
Now I am at the stage where I rarely need assistance but can be of assistance to newbies going through the same types of roller coaster rides..... One none of us ask to join....
I had a bad experience with the then hospital social worker .... thankfully our local cancer unit now has new social workers who are on the ball and very supportive to a wide range of cancer patients and their carer's /families etc...
Do they drop the ball sometimes I am sure they do.... as they are human like us all....
It is sad you have had such bad experiences in your BC ride.... Please don't allow it to stop you asking for help when you need it.... I am sorry that it has caused you pain the lack of support when you needed it.
you might find that a cancer council volunteer who has had similar type of BC will be able to support you more..... I know I met some lovely ladies at BCNA Summit who are volunteers with the local Cancer Councils... I never knew there were such supports out there but my local BC nurse was supportive .
hugs
Soldiercrab
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Hi @Sister My breast care nurse (attached to my surgeon which I had done under private) rang me after my op and sent me the my journey kit . She didn't contact me again, but when I contacted her by email all worried about agreeing to chemo she immediately replied to me on the Sunday evening with a long email and organised a time to see me asap. She was brilliant. Spent a couple of hours talking things through face to face with loads of info..,, breast care nurses see the overall picture and not just the narrow specialised field of surgery or chemo etc. She was the one who said hit this nasty disease with everything you're offered because of her broad view . So I did. I haven't heard from her since and I haven't called as I haven't found the need, especially since I've found you lot, but I know she is there if I need her . I think they are a tremendous support in times of need. On saying that, there's always a bad apple, it's the nature of humanity and I agree it will be hit and miss. I imagine I'll contact her again when I start thinking about hormone inhibitor time. If I have a melt down I'll definitely call her.
If I hadn't called her in the first place whose to say she would have contacted me again after that very first post op call.
Alrhough im a public patient now she said she'd always be my breast care nurse throughout my treatment.
Thats my take on the service.
Xxxx0 -
My breast care nurse through St Vincent’s hospital in Sydney is awesome. She came to see me at my pre-admission appointment then several times in hospital after my DMX surgery. She ordered the My Journey kit and bra for me and made sure I had my drain bags and zonta pillows. She took a base-line lymph drainage reading and gave me info about lymphodaema and lymphatic massage and has phoned me once a week since I left hospital - that was 4 weeks ago. I can ask her anything and she’s only too happy to help. An angel on earth
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I agree with @wendy55. The lines of communication aren't always clear. I really like my BreastCare nurse but I've never been sure about the contact protocols. Does she call me? Do I call her? It was never explained to me. She was there a lot at the beginning, unasked (which was fine) but last week, when I really needed her, she wasn't. I didn't call because there were some extenuating circumstances I was aware of, but it was odd & not optimal.
I went into hospital the Friday before last for a DMX & reconstruction. On Tuesday that hospital's BreastCare nurse arrived in my room apologising, she said she didn't know I was there. Now that sounds like an admin error on the hospital's part to me, but somewhere there was a comms glitch. I was having a very difficult time and she advocated for me, and it worked. She came back two days later when I was very distressed and she was a great comfort to me, demonstrating the same skill with empathy, compassion, and the expression of both, as 'my' BreastCare nurse does (who came via my surgeon).
Anyway, this is all a bit garbled, as the delivery of the marvellous service seems to be as well, given the variety of experiences shared here. Interesting thread @Sister, thank you!0 -
Mmmm....Cancer Council volunteers!!!
Scene: 2 people in a room having I.V. chemo, one Cancer Council volunteer.
The volunteer spent the entire time (nearly two hours) talking to the other person. At no time did she acknowledge that I was there, nor did the other person in the room. I had met the volunteer previously, but I didn't tell her anything about me. She had told me her complete medical history. I didn't say anything because they were talking so quickly and intently.
When I had finished for the day, I excused myself as I walked between the volunteer and the other patient. Still no acknowledgement, just a grunt.
Oh, the stories I could tell....0 -
Both my oncology and surgical breastcare nurses at the PA in Brisbane have been very helpful, efficient and understanding when I have needed support. I have had to contact them but I have always got the help and answers I have needed.
When I was in hospital recently with my DMX surgery my breastcare nurse came to see me each day. Like @kmakm said I am not sure either about contact protocols and I didn't realise I would have another nurse after chemo finished but all in all these are lovely ladies working in a under resourced environment and still have a smile and compassionate ear2 -
@Sister I too had a similar experience with Breast Care Nurses and quite possibly at the same private hospital here in Adelaide. I really was barely aware at the time of the role with the exception of being given a bagfulof pamphlets and a Berlei bra but someone who had the title.
I have been astounded sinceto learn from a local support group of the wonderful ongoing support others have received from breast care nurses at a public hospital to the point that should I have a recurrence I would seriously reconsider where to have treatment.
This gap in support has been further demonstrated many times by what I have read on this blog .In fact I did not know what a McGrath nurse was when I joined this blog.I am doing fine now but there was a time when that support may have been a lifesaver .0 -
PS I owe a lot to the Cancer Council Connect line and this blog for much needed support earlier in my journey .I had no idea of or access to breast cancer nurse support not even a phone call when I left the top private hospital.0
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To put it bluntly my experience made me think the title breast cancer nurse was a social status symbol and somewhat shallow in substance and effect.I have privatehealth insurance and was shocked to compare my care with those who were public patients at Flinders Medical Centre - mine seemed just about throughput and money -both the surgery and radiotherapy - with no interest once the service was delivered and little at the time.0
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I do not include my surgeon or his staff in the above remarks.0
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@Giovanna_BCNA
@Marianne_BCNA
is there an updated position statement on Breast Care nurses that could be put up here? the one I found on the BCNA website refers to 2004
Experiences are mixed however I think it is a little direction that most would appreciate to understand if they are available in their area and the protocols based around contact et cetera
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@sister Like you I had a BCN when I first went into hospital. Another one came to see me the day after my Operation but since then I have heard nothing. I did call them a week after my op as I had inflammation and they advised me to go back to the hospital which I did. I had picked up an infection. I didn't get a phone call from the BCN to see if everything was OK.
I didn't think anything of it at the time. But now the subject has been brought up there does seem to be a huge difference in what different area's and BCN's do.
On saying that I wouldn't want there job for quids. There must have very broad shoulders to help so many people.
xxxx
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@Janny54 you too are from Adelaide I see. Wonder if the bc nurses were from the same hospital as @Sister and I had surgery in ? Local Encore ladies from the southern area tell a completely different story about the level of support from bc nurses at FMC - I was astounded at the comparison of our experiences.0
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Agreed and very disappointing in retrospect0
