re my continuing drive for awareness

Hi all I hope everyone is able to enjoy the lovely days we are having, the sun brightens us all up. Just to keep you up todate, I am waiting on leaflets from SOCKS re symptoms of OC. They have informed me that their workers are purely volunteers but they will send some leaflets to me as soon as possible. Another idea that came into my head was to contact the Feel Good Section of the Examiner to see if they might see fit to do a feature on the signs and symptoms of OC in their edition that week. So hopefully some one out there will listen and act and lives can be saved. That is all we can do Enjoy the rest of the weekend and get gardening Joan

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  • Hi Suzuki. Well done - you got alot organised in a short space of time and I have no doubt your efforts will effect several people's lives for the better - having been more informed and aware. Highlighting signs and symptoms in the Feel Good section of the examiner is a great idea. I was very disappointed that wasn't done with the article I did last year for a national paper. I had asked for the SOCK symptoms to be included as my presentation was a bit atypical but it didn't happen. That made me more wary of presenting my personal story again but makes me even more determined to raise general awareness. Have a great weekend - weather looks like it's going to hold up. X

  • Suzuki.

    Like you, I got a very generic reply from ICS - like yours, telling me what ICS does, but did not answer my specific question about doing something about raising OC awareness in May. Was told to visit the Daffodil Centre, their Helpline or go on-line for info or contact their support line. I don't think they even read my e-mail (which was short & to the point).

    Kinda knew that would be the answer - so it seems to me, that it will be up to us, the patients, and the good people in OvaCare, who will have access to the media etc.

    Had no reply from Irish Medical Org (yet) but am still hopeful.

    The posters for the Patient Day in April are displayed in the oncology wards in Bons - so hopefully, it might make other women aware of the site & group.

    I think when you retire - we should set you up as a lobbyist, as you certainly get results.

    Enjoy the weekend & St Patricks Day.

    Maureen

  • The Irish medical organisation have also ignored me too. But I will remind them. Well as publications are planned in advance I thought it no harm to throw the idea at them now. I actually got Womans way this week so will check who exactly I should email about this if I dont get a reply from the last email. Well a certain gentleman should be proud of making us well enough to try and make a difference for others.

  • Hi Ladies,beautiful spring time weather.I was on 96fm last wk highlighting the symptoms of O.C.I also emailed cork 103fm a

    Requesting air time for the email to make people more aware of symptoms of O.C.It seems to me that there is little advertised,leaflets available etc.All we need to do if possible is to distribute leaflets in significant areas,perhaps we will have to print the leaflets ourselves.

    Enjoy the rest of the weekend,x

  • Hi annieH1 the email address for SOCKS is info@socks.ie and I forgot to say well done on getting air time. Joan

  • Hello annieH1 - well done. I missed your talk on 96fm last week.. Do you know if they do 'print outs' of interviews etc if listeners request one? or do you have a record of it.

    Daisies

  • Hi Daisies ,They don't do print outs ,I asked a friend of mine who was looking for one last yr.I reckon it has to be recorded ,which I didn't do,wasn't even thinking about that but I should have.I gave the symptoms and also spoke about looking forward to my future and renewing our vows in June.That was me saying in a way,"I'm not dead yet and there is a future .x

  • Hi Daisies,just checked 96fm site.You can get the interview on podcast.P.j Coogan open line March 11th,hour 2, it's about 25 to 30 mins into the show before I am on. X

  • Annie. Just finished listening to your interview on 96fm : well done, you were fantastic and outlined the symptoms so well - even though they sound so minor in themselves. Talk to any of the OC women and they all will tell you they had some or all of the symptoms you mentioned

    The only thing now is that as you have posted about the renewal of your wedding vows on this wonderful site, & given the date out on radio, should we expect our invitations!!!! ha, ha, only joking of course. We will all look forward to the photos.

    While this month is O/C awareness month - you are the first person I heard on radio talking about it - so take a bow.

    Assume Avastin is you maintenance drug - I'm on that and my body is fighting it now since I finished the last lot of chemo. Neer settled into it, so am going to ask my Onc for a little break.

    Talk care - & even though the lovely weather of last week is missing - enjoy St. Patricks Day.

    Maureen

  • Hi AnnieH1, Well done, I am sorry I didnt hear you on 96fm. I vaguely remember someone talking about a post chemo support group with a similar christian name but that could have been some one else. I have gone to SOCKS facebook page and liked it and left a message re leaflets and so I then had to email them. I got a lovely email back from a lady called Dearbhla who will send me on some leaflets which I intend passing to my gp and leaving some in my place of work and my local library. I live in the Southside but I attend a gp in Old Youghal Road so I can also leave leaflets in surgeries near where I live. I will check the email address for you and get back to you with it. They SOCKS are a group of volunteers who work during the day and they do this in their spare time. I actually looked up the Irish College of Practitioners and discovered they have a conference on World Ovarian Cancer Day with a doctor speaking on Womens Health issues in Dublin. So I emailed them and asked them to forward my email to this doctor, Miriam Daly and requested that they also discuss Ovarian Cancer and the symptoms at the conference. That email address is info@icgp.ie. It would be great if they would consider my request. I only did this last night.

  • Suzuki. Well done again, is all I can say. You leave the rest of us in the shade when it comes to getting things done. Daisies

  • I dont really, I am just giving it a try to see who will help to make women more aware of the signs and symptoms of OC. Had the Avastin Thurs feeling a bit tired tonight but will go to bed now soon

  • Hi AnnieH1. I just listened to your interview. Well done. It was really good. You were so articulate and got all the signs and symptoms mentioned. I hope you don't mind (as you already gave out all the details of when/where it was on) that I copied the link for any others who wish to listen -

    utv.vo.llnwd.net/o16/96FM/2...

    I hope you have a wonderful time in June - I have no doubt it will be a magical day. X

  • Hi Suzuki, I am just about catching up on all the posts as I been a bit under the weather, I think my body is just starting to get used to the chemo once again. I have sent an e-mail to my local weekly free newspaper asking them if they could run a piece on OC coming up to World Ovarian Cancer Day. The newspaper covers a wide area in Offaly. I will let you know if I hear back from them.

    Kittie

  • Thanks Kittie, that is another idea to contact our local newsletters, the Hse also puts a news letter or sends one to the gps I think it is called waiting room, must check that one out. I am sorry you are feeling the brunt of the chemo at the moment, it is one of the harder ones as far as I can remember but the more you have done the shorter the road back to post chemo, thinking of you

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