help needed

Information about available support and assistance at all stages.
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sparkles3001
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Postby sparkles3001 » Sun Nov 02, 2008 5:23 pm

This is the stuff I need! Thanks heaps and keep it coming!!! :biggrin:

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gallopinggranny
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Postby gallopinggranny » Sun Nov 02, 2008 2:35 pm

sparkles i really think that post support for bc victims is sadly lacking and that is why this forum is so good. i found that once i got home from hospital after the surgery that i was on my own and once the :rads: finished i was at loose ends for a while. after 6 weeks of concentrated treatment, in a routine and having the contact with the practitioners it was nice to get home, but it is bewildering. you get home and think, well is this it? do i put it all behind me and just carrry on now as if nothing happened? who else understands the side effects, the healing process and the emotional side of recovery? bosom buddies i thought was a waste of time. it was a case of you call us if you need us. my DH was amazing and so was my work managers, but i really needed a bit of a life line and it wasn't there. Image
Onward and Upward
GG.

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kiwijan
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Postby kiwijan » Sun Nov 02, 2008 10:08 am

Totally opposite end of scale here to what you want BUT; even though I was 64yrs old at dx and I live in NZ not Perth; my best help-line was the head nurse at the Breast Clinic who gave me a card with her work AND HOME phone numbers and said "anytime day or night - now or in the future - just ring me. I never did ring her; but it was super to know there was someone with professional knowledge there for me and I was not drifting about without support.
Stage 1; Grade 11; bc. ER/PR positive; lumpectomy and rads. Finished 5yrs of tamoxifen on 1/11/10

sparkles3001
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help needed

Postby sparkles3001 » Sat Nov 01, 2008 8:11 pm

Hello there :wave: everybody, Sparkles needs help!!!

I have been asked to become a part of 2 different focus groups here in Perth for the Breast Cancer Foundation of Western Australia.

The aim of the first group :chat: is to find ways of helping those of us who have had this scourge post treatment... You know, the Black Hole Stage - where the umbilicus of all your specialists is cut :sniff: and you find yourself drifting like a barnacle dropped off a boat :sail: in a foreign port... :anyone?:

The other is for the improvement of services for the clinically young (40-50yrs) and very young (anyone under 40yrs) :mexwave: women/men who have been affected. I have my own :rain: experience, a lot of which I haven't shared yet (sorry-trying not to whinge too much), but would like input :bighug: from all others as to your experiences and thoughts on improvements for services and assistance offered.

To make the most of this opportunity :angel: I would really love to have everybody's ideas to take with me, so if you think you have any ideas or thoughts that would be of use, even if you think they aren't that useful, I'd love to hear them.



I do so love emoticons... sigh!


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