McGrath Nurses
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@Fufan - feeling lonely and confused (even in a room full of people) is totally normal .... as no-one else is going thru what you are going thru. xx
That's good that she has made contact and given you the pillow & the bra .... They are usually the 'first point of contact' if you have a query re pain or any issue that you notice during your recovery from surgery & ongoing treatment. BCNA also has a helpline Mon-Fri that you can call (the 1800 number is in the blue banner at the top of the page.)
I must admit, that my own experience with the BC nurse was a bit weird .... as the surgeon's nurse didn't always return my calls - and the BC nurse in my 'regional area' had left & hadn't been replaced .... so I just used the forum (and a couple of good friends who'd also had BC to bounce off) for most of my info and support - as everyone here 'gets it', having been thru it.
If you have anything that you'd like to discuss in particular ..... put up a new thread, with the 'problem' identified in the heading - and we'll do our best to help you thru it. Maybe contact your GP (or social worker at the hospital) to see if you can speak with a psychologist re 'coping mechanisms' for when you are stressed or upset?
Try not to 'overthink things' ..... take it day by day, hour by hour, if necessary xx
Take care & all the best with your ongoing treatment xx0 -
Hi @Fufan,
Thats a very good question, it all depends on the nurse that you get and where you live,also if they are full time or partime also if they are city based or rural, they are there to give you emotional support, to answer any questions you may have, they are there to advocate on your behalf should you need anything,the one thing most people dont know is that it is a referral based organisation, you have to contact them,so please ring her with any concerns you have, you might be pleasantly surprised,I have had a McGrath nurse for 7years now, well 2 of them one retired,and they only worked part time and had a large area to cover, however they were always only a phone call away,always trying to do the best they could in a very time consuming job,I knew that if I had a question or just needed to talk to someone they would be there or would ring me back, I had the mobile home numbers of both of my nurses and knew that I would be able to call on them if an emergency cropped up, they under go a lot of training to ensure that they are up to date with everything breast cancer,they might not be able to be there all of the time but they sure do try, give them a ring and ask away.
wendy551 -
@Fufan Sorry to hear youve had a "non-experience" with your BC Nurse. I live regionally & my McGrath Nurse was located about an hour away. Despite this, she would ring me, email me & even pop in to see me when she was in my town conducting a get together. I have heard other stories of women who seemed to have "lucked out" when it comes to their experience. I consider myself very lucky to have had the wonderful care & support from the lady I had. i would ring her, email her with all the stupid questions, concerns & even to get clarification on things. She would even advise me on "what to do next" & "what would you do if it were you"?? She made me feel so comfortable & sent me brochures, books & merchandise & I felt very loved. She even offered to counsel my family.
After a few years, once I had recovered fully & wasnt in need of her care, i was very sad when we finally had to part ways as she had been my rock. But by me stepping aside, i know it gave one more cancer patient a chance to be in her care.
As has been said above, there are other avenues of support available. I have been on this forum since day 1 of my diagnosis & the support & knowledge of those who have dealt with it first hand, is amazing.
I have also used the Cancer Council hotline, the BC Nurses at the hospital & also one that worked in my surgeons office. You could even contact the McGrath hotline & speak to someone over the phone to voice your concerns & they may even know of a support group near you that can provide some much needed comfort to you.
i hope you find the care & support you need as we all need it during these difficult times. love & strength. xx
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Thank you @arpie @wendy55 @Anne65. I live in the third largest urban area in NSW. The nurse works two days a week. My GP is booked up a month in advance and the receptionists are fierce gatekeepers. (Although I haven’t yet tried the cancer plea, which seems to work miracles in other cases).
I don't need psychology, I need information. My problem is not with specific questions, which obviously I would ask, but with what I don’t know about. An example: with my mastectomy, I knew I would have a drain. I knew nothing of drain bags. Fortunately my surgeon provides her patients with a box of goodies and useful items, and there was the drain bag. But isn’t that the sort of thing my nurse should have alerted me to?
@wendy55, what is a “referral based organisation”? I have clearly been referred, but do you mean I must initiate each contact? In the circumstances, that seems a very unsatisfactory state of affairs1 -
@Fufan
I didn’t have a McGrath nurse, didn’t know such things existed. So my questions went to my surgeon’s nurse or, best of all, the senior oncology nurse at day oncology. As I understand it, there are simply not enough McGrath nurses to go round and in these trying times I assume their availability will also be curtailed by Covid (having it or, rightly, being in isolation) like many health workers. Dealing with the stuff you’ve never dealt with before can be very frustrating but this site can be helpful. Even helpful people can add to the confusion - during a scan, an operator referred to my ‘insert’. What insert?? Turned out to be a seroma (accumulated fluid) - a whole different story. At the start, most of us don’t know what to ask - and professionals don’t know what we don’t know. It gets better.0 -
@Fufan
Everyone's experiences differ
Public or private patient plays a role as well as type, treatment, surgery et cetera
Unfortunately your appointment was cancelled. It's probably worth you ringing to ask if and when you are rescheduled.
As to drain bags. Not everyone is issued with these. I was, however, it was once I was admitted to hospital and my Breast Surgeon's Breast care nurse came along, measured me for a Berlei bra, gave me a bag of goodies including, small shaped pillow, a bag to carry X-rays, leaflets introducing me to BCNA and a DVD which you can source on the BCNA website
https://www.bcna.org.au/health-wellbeing/strengthen-your-recovery/#:~:text=A Pilates program following breast,surgery at your own pace.
I only knew of McGrath nurses through fund-raising but never thought of sourcing one. Turned out my Surgeon had that covered.
There are lots of resources once you know what you need, for example
Knitted Knockers
http://knittedknockersaustralia.com/
Best wishes
Take care0 -
WOW! @Fufan - it sounds like the nurse needs to work more than 2 days a week, for that demographic!! I wonder if contacting your Local Member & agitating for more hours or better still, more BC nurses!
How wonderful that your surgeon gave you the box of goodies, including the drain bag! Some people just use a dressing gown with pockets ..... or tie some string between 2 bags (if they have drains on either side) & sling them round their neck ....
It is a learning process .... we are facing obstacles that we've never faced before .... and only those who've been thru it themselves, really knows all the tips & tricks.
When my husband had his initial stomach removal surgery 11 years ago, the surgeon's nurse did EVERYTHING for us - she made ALL our appointments, sat in on them if she was available & was at the end of the phone whenever I/we needed her ...... I sort of assumed that would happen again with my BC diagnosis .... but it didn't.
But it does happen for some, so that is good for them.
Feel free to raise anything that you think of here on the blog .... and hopefully, we can talk you thru it xx
take care0 -
@arpie, that’s not the only nurse in the area: just the one I was referred to.Everybody else has entirely missed the point. I do not expect to be “provided” with a drain bag. I sew, I can make a drain bag, my problem was I didn’t KNOW such a thing existed. And I would have thought that might be where a breast nurse would be useful.
”There are lots of resources once you know what you need”. Precisely.0 -
@Fufan - that's good that you have more than one nurse available to you - we only have the one BC nurse for a huge area on the Mid North Coast ..... Maybe see if you can be referred to a different one, if you don't think this one is helping you enough?
As you've seen from previous comments (even back in 2018 at the start of this thread) ... everyone has had different experiences with their BC Nurse ... not all as good as everyone else's.
Yes, in a perfect world, there 'could be a list' of things that you should be advised of .... but along with all the other 'information overload' at first diagnosis, I think they drip feed you instead .....
If you look to the R/H side of the 'Discussion' page ... you'll see the heading 'Popular Tags' .... if there is one area that you want to explore, instead of using the 'search' function (on the Discussion Page) you can just click on those 'tags' ..... However, Not ALL conversations are 'tagged' tho, so sometimes, using the 'search function' will deliver more results ..... specially if looking for (eg) a particular type of chemo.
Take care & all the best for your chemo on the 17th ... plenty of tips in the 'chemotherapy tag' ...0 -
That’s good news @Fufan
I had my treatment in a private hospital and had a breast care nurse attached to the hospital but I only met her in hospital.
She seemed very over stretched and was quite slow in returning my calls.
I did find her useful with questions that I thought were not worth bothering my surgeon with and she could help me decide whether I was worrying about nothing) .
I didn’t actually feel the need to call her once I had my second follow up appointment with my surgeon.
I did read everything I could on here but I am that sort of person and agree sometimes you just want to ask a professional what to do or expect.
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