Why not join the Living with metastatic private group? Access group via the link here.
Today’s Mood: cranky with a touch of psycho
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Thanks for all the info @SoldierCrab. I have not heard of Mummy’sWish. I don’t think most places deal with mets de novo very well. Because at initial diagnosis I was considered inoperable it was straight to chemo. No surgery and no radiation. That meant no breast care nurse, no information, no check ups with surgeon etc. other than ongoing Herceptin and Perjeta, after chemo I was pretty much on my own. I didn’t know what to do and hadn’t really told people, so I just went back to work and tried to carry on as normal. In fact, I increased my hours and tried to be supermum. Worst. Idea. Ever. Just about killed me. Having recently got a new cancer (because I am such an overachiever lol) I am trying to take a more measured approach, but it’s bloody hard. I can’t work anymore so I feel pretty useless. I just want to be perfect dammit!0
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YOU are still entitled to a breast Care nurse .... !!!
ah being perfect ....... let me see I tried that once ..... nearly killed me and my kids were unhappy with the grouch from hell.....
Stargirl did you get an inbox from me with the links to different things ?
IF not I can redo it here.
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Thanks again @SoldierCrab. Ironically, 3.5 years later when I developed a new primary and did then have a mastectomy I was offered loads of support. I was quite bemused. When I was expected to die and immediately post-chemo I got ZERO support. When all I needed was a boob off and some radiotherapy I was suddenly offered counseling, a nurse, told about OTIS etc. Where the f*ck was all that when I actually needed it???? I don’t mean to sound ungrateful but the system is truly bizarre. The less sick you are, the more help you get? I did actually point that out to them in hospital and they sheepishly admitted that the service is a bit shit for stage 4 de novo but that they try to do it better now. I hope so for all the women coming through now. On the upside they obviously get quite a bit right as despite the grim prognosis 4 years ago I’m still lively enough to get quite feisty 😬5
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I just saw this on Facey. And I think it’s what all of you lovely people have been trying to tell me. Cx3
