I have just read this post and wanted to respond to all of you. I can see that there have been varied experiences with accessing a breast care nurse and this has been discussed previously in the online network. See response from @Marianne_BCNA below from a similar discussion regrading breast care nurses.
Hi all, Thanks for alerting me to this conversation @iserbrown. The very varied experiences and disparity in care you all describe with breast care nurses reflects what we learnt from our State of the Nation project. We are aware that this is particularly an issue for women who have neo adjuvant therapy as they may not see a breast care nurse until much later in their treatment or at all. We have fed the information we received form the State of the nation back to McGrath and CNSA (Cancer Nurses Society of Australia) and have been in close communication with them. There isn't an updated position statement re breast care nurses but I understand that this is a priority for them and we will maintain communication with them during this process.
As Marianne has mentioned this is one of BCNAs priorities from the State of the Nation report and we will continue to advocate to government for increased funding\nfor metastatic breast care nurses to enable training for breast care nurses in treatment\npathways for people with metastatic breast cancer. BCNA has been corresponding with the McGrath Foundation regarding this deliverable. We will keep you updated regarding further progress in this area.
","board":{"__ref":"Forum:board:general-discussion"},"conversation":{"__ref":"Conversation:conversation:175474"},"author":{"__typename":"User","login":"Giovanna_BCNA"},"postTime":"2019-01-05T02:22:58.000-08:00","kudosSumWeight":3}},{"__typename":"MessageEdge","cursor":"MjUuMnwyLjF8b3w1fDE0OjAsMzk6MXwy","node":{"__typename":"ForumReplyMessage","uid":175480,"body":"@Sister You can speak to a breast care nurse at any time. Mine is still available and helpful for me. If you want to I would urge you to find one. From this site we know they're not always attentive but if you find a good one, they're invaluable.","board":{"__ref":"Forum:board:general-discussion"},"conversation":{"__ref":"Conversation:conversation:175474"},"author":{"__typename":"User","login":"kmakm"},"postTime":"2018-09-07T16:12:24.000-07:00","kudosSumWeight":2}},{"__typename":"MessageEdge","cursor":"MjUuMnwyLjF8b3w1fDE0OjAsMzk6MXwz","node":{"__typename":"ForumReplyMessage","uid":175502,"body":"I think the main thing is to have the option of bc nurses available. I had a splendid senior oncology nurse at day oncology and didn’t really need anyone else. Just knowing there is someone experienced, who has a bit of knowledge about you, to turn to is immensely helpful - whatever the title. ","board":{"__ref":"Forum:board:general-discussion"},"conversation":{"__ref":"Conversation:conversation:175474"},"author":{"__typename":"User","login":"Afraser"},"postTime":"2021-03-17T23:59:47.000-07:00","kudosSumWeight":2}},{"__typename":"MessageEdge","cursor":"MjUuMnwyLjF8b3w1fDE0OjAsMzk6MXw0","node":{"__typename":"ForumReplyMessage","uid":175507,"body":"@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 <3
","board":{"__ref":"Forum:board:general-discussion"},"conversation":{"__ref":"Conversation:conversation:175474"},"author":{"__typename":"User","login":"Anne65"},"postTime":"2022-02-10T16:01:57.000-08:00","kudosSumWeight":2}},{"__typename":"MessageEdge","cursor":"MjUuMnwyLjF8b3w1fDE0OjAsMzk6MXw1","node":{"__typename":"ForumReplyMessage","uid":175478,"body":"I am going to see my McGrath nurse next week i have at least ten other women saying the same thing this is not good enough. Everyone of us needs support more after than during surgery you shouldn't have to deal with this by yourself this makes me cry, i know from my own experience and even now knowing i can call on kate and she will be there to listen and help me 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The information available on the Breast Cancer Network Australia website is not medical advice and is provided for information purposes only. It should not be viewed as a replacement for a consultation with a qualified medical professional. Our website is designed to offer information and support to the general public. Be aware that we do not provide any medical advice, and for medical advice we recommend you speak to a qualified medical professional or doctor.
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I have been told it is different for private and public if your public you are on your own which I have just found out to be quiet true. I have joined a bc group like this and is in my home town adelaide . I have tears as I write this I posted a reply to a women and I hand about four replies from other women that were the same no McGrath nurse or any bc nurse to contact when they came home wtf all this money we raise and suppose to have a nurse for every women that has /had breast cancer I'm shocked at how many of these women have no help or know how to get help. Can anyone tell me why this is happening .
","body@stringLength":"858","rawBody":"i am so angry and sad regarding women that have had surgery and have no one after wards to help them, after my surgery I had a pamphlet that had a McGrath nurse I could contact which i have and they have been a gods send to me. I have been told it is different for private and public if your public you are on your own which I have just found out to be quiet true. I have joined a bc group like this and is in my home town adelaide . I have tears as I write this I posted a reply to a women and I hand about four replies from other women that were the same no McGrath nurse or any bc nurse to contact when they came home wtf all this money we raise and suppose to have a nurse for every women that has /had breast cancer I'm shocked at how many of these women have no help or know how to get help. Can anyone tell me why this is happening .
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McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175515"},"body":"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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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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Whoohoo! I’ve just had a call from the McGrath nurse: her ears must have been burning. First contact since 4 January. My mastectomy wound is still not completely healed so I’m not yet sure I will have chemo on 17th. I see the surgeon tomorrow. ","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"213","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T20:42:30.000-08:00","lastPublishTime":"2022-02-13T20:42:30.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175514","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"attachments":{"__typename":"AttachmentConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"customFields":[],"readOnly":false,"editFrozen":false,"body@stringLength":"269","rawBody":"@arpie. Whoohoo! I’ve just had a call from the McGrath nurse: her ears must have been burning. First contact since 4 January. My mastectomy wound is still not completely healed so I’m not yet sure I will have chemo on 17th. I see the surgeon tomorrow. ","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175514_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}}},"ModerationData:moderation_data:175513":{"__typename":"ModerationData","id":"moderation_data:175513","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175513":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:20667"},"id":"message:175513","revisionNum":1,"uid":175513,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175513"},"body":"@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' ...","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"203","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T19:15:11.000-08:00","lastPublishTime":"2022-02-13T19:15:11.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175513","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"attachments":{"__typename":"AttachmentConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"customFields":[],"readOnly":false,"editFrozen":false,"body@stringLength":"1602","rawBody":"@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' ...","images":{"__typename":"AssociatedImageConnection","edges":[{"__typename":"AssociatedImageEdge","cursor":"MjUuMnwyLjF8b3wyNXxfTlZffDE","node":{"__ref":"AssociatedImage:{\"url\":\"https://onlinenetwork.bcna.org.au/t5/s/nkyiu94732/images/bS0xNzU1MTMtMzk5Nmk2MTZFODZGQzY5M0U3RjIx?revision=1\"}"}}],"totalCount":1,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175513_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}}},"ModerationData:moderation_data:175512":{"__typename":"ModerationData","id":"moderation_data:175512","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175512":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:25"},"id":"message:175512","revisionNum":1,"uid":175512,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175512"},"body":"@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.
","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"223","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T17:44:53.000-08:00","lastPublishTime":"2022-02-13T17:44:53.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175512","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"attachments":{"__typename":"AttachmentConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"customFields":[],"readOnly":false,"editFrozen":false,"body@stringLength":"468","rawBody":"@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.
","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175512_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}}},"ModerationData:moderation_data:175511":{"__typename":"ModerationData","id":"moderation_data:175511","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175511":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:20667"},"id":"message:175511","revisionNum":1,"uid":175511,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175511"},"body":"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 care","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"212","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T16:38:31.000-08:00","lastPublishTime":"2022-02-13T16:38:31.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175511","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"attachments":{"__typename":"AttachmentConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"readOnly":false,"editFrozen":false,"body@stringLength":"1262","rawBody":"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 care","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175511_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[]},"User:user:17306":{"__typename":"User","id":"user:17306","uid":17306,"login":"iserbrown","biography":null,"registrationData":{"__typename":"RegistrationData","status":null,"registrationTime":"2015-07-12T16:59:09.000-07:00"},"deleted":false,"email":"","avatar":{"__typename":"UserAvatar","url":"https://onlinenetwork.bcna.org.au/t5/s/nkyiu94732/images/dS0xNzMwNi1pSjI3dGM?image-coordinates=29%2C0%2C562%2C532"},"rank":{"__ref":"Rank:rank:39"},"entityType":"USER","eventPath":"community:nkyiu94732/user:17306"},"ModerationData:moderation_data:175510":{"__typename":"ModerationData","id":"moderation_data:175510","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175510":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:17306"},"id":"message:175510","revisionNum":1,"uid":175510,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175510"},"body":"@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.
Best wishes Take care","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"213","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T16:27:50.000-08:00","lastPublishTime":"2022-02-13T16:27:50.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175510","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"readOnly":false,"editFrozen":false,"body@stringLength":"1495","rawBody":"@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.
Best wishes Take care","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175510_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[]},"User:user:16650":{"__typename":"User","id":"user:16650","uid":16650,"login":"Afraser","biography":null,"registrationData":{"__typename":"RegistrationData","status":null,"registrationTime":"2015-03-24T19:34:07.000-07:00"},"deleted":false,"email":"","avatar":{"__typename":"UserAvatar","url":"https://onlinenetwork.bcna.org.au/legacyfs/online/userpics/595/pF56ENKPV9PRD.jpg"},"rank":{"__ref":"Rank:rank:39"},"entityType":"USER","eventPath":"community:nkyiu94732/user:16650"},"ModerationData:moderation_data:175509":{"__typename":"ModerationData","id":"moderation_data:175509","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175509":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:16650"},"id":"message:175509","revisionNum":1,"uid":175509,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175509"},"body":"@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. ","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"208","kudosSumWeight":0,"repliesCount":0,"postTime":"2022-02-13T16:11:03.000-08:00","lastPublishTime":"2022-02-13T16:11:03.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175509","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"readOnly":false,"editFrozen":false,"body@stringLength":"835","rawBody":"@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. ","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175509_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[]},"ModerationData:moderation_data:175508":{"__typename":"ModerationData","id":"moderation_data:175508","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175508":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:25"},"id":"message:175508","revisionNum":1,"uid":175508,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175508"},"body":"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 affairs","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"218","kudosSumWeight":1,"repliesCount":0,"postTime":"2022-02-13T14:56:26.000-08:00","lastPublishTime":"2022-02-13T14:56:26.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175508","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"readOnly":false,"editFrozen":false,"body@stringLength":"979","rawBody":"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 affairs","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:175508_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[]},"User:user:20627":{"__typename":"User","id":"user:20627","uid":20627,"login":"Anne65","biography":null,"registrationData":{"__typename":"RegistrationData","status":null,"registrationTime":"2017-12-16T22:02:53.000-08:00"},"deleted":false,"email":"","avatar":{"__typename":"UserAvatar","url":"https://onlinenetwork.bcna.org.au/t5/s/nkyiu94732/m_assets/avatars/default/avatar-9.svg?time=0"},"rank":{"__ref":"Rank:rank:39"},"entityType":"USER","eventPath":"community:nkyiu94732/user:20627"},"ModerationData:moderation_data:175507":{"__typename":"ModerationData","id":"moderation_data:175507","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175507":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:20627"},"id":"message:175507","revisionNum":1,"uid":175507,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175507"},"body":"@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 <3
","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"211","kudosSumWeight":2,"repliesCount":0,"postTime":"2022-02-10T16:01:57.000-08:00","lastPublishTime":"2022-02-10T16:01:57.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175507","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"readOnly":false,"editFrozen":false,"body@stringLength":"1763","rawBody":"@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 <3
","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":2,"currentRevision":{"__ref":"Revision:revision:175507_1"},"latestVersion":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[]},"User:user:12234":{"__typename":"User","id":"user:12234","uid":12234,"login":"wendy55","biography":null,"registrationData":{"__typename":"RegistrationData","status":null,"registrationTime":"2013-09-15T08:16:22.000-07:00"},"deleted":false,"email":"","avatar":{"__typename":"UserAvatar","url":"https://onlinenetwork.bcna.org.au/t5/s/nkyiu94732/m_assets/avatars/default/avatar-9.svg?time=0"},"rank":{"__ref":"Rank:rank:39"},"entityType":"USER","eventPath":"community:nkyiu94732/user:12234"},"ModerationData:moderation_data:175506":{"__typename":"ModerationData","id":"moderation_data:175506","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"ForumReplyMessage:message:175506":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:12234"},"id":"message:175506","revisionNum":1,"uid":175506,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"parent":{"__ref":"ForumTopicMessage:message:175474"},"conversation":{"__ref":"Conversation:conversation:175474"},"subject":"Re: McGrath Nurses","moderationData":{"__ref":"ModerationData:moderation_data:175506"},"body":"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.
wendy55","body@stripHtml({\"removeProcessingText\":false,\"removeSpoilerMarkup\":false,\"removeTocMarkup\":false,\"truncateLength\":200})@stringLength":"203","kudosSumWeight":1,"repliesCount":0,"postTime":"2022-02-10T15:05:37.000-08:00","lastPublishTime":"2022-02-10T15:05:37.000-08:00","metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","placeholder":false,"originalMessageForPlaceholder":null,"isEscalated":null,"solution":false,"entityType":"FORUM_REPLY","eventPath":"community:nkyiu94732board:general-discussion/message:175474/message:175506","replies":{"__typename":"MessageConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"customFields":[],"readOnly":false,"editFrozen":false,"body@stringLength":"1220","rawBody":"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.
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