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Looking for some HELP

Good Morning all my Teal Sisters out there.  I have some thoughts rattling around in my brain and was wondering if some or all would like to weigh in to help me.  I have some questions to get us thinking about our own disease and so that maybe I can pull together something to "shine" the light on this type of cancer going forward.

What did you know about Ovarian Cancer prior to diagnosis?

What did you wish you had known about Ovarian Cancer?

What do you think there needs to be more of when it comes to Ovarian Cancer?  (ie/ supports, funding for meds, trials-- to name just a few)

Do you think there should be more awareness of the complications of Ovarian Cancer and what you require at home?  (I would say like raised toilet seat, homecare, obtaining supplies)

Where do you find the literature out there lacking as far as being a) understandable, b) availability, c) access, d) content

What stage were you first diagnosed at?

When did your recurrence occur? (like how many months after treatment)

What type of cancer do you have?

What complications came up for you?  (Meaning, things I never really thought of like ostomy, bowel anastamose, nephrostomy, blood pressure issues, edema ---so think along those lines)


I think that is enough questions to get this rolling........but if you have any other questions you want added then just let me know and we will get that rolling too.
I hope you all feel comfortable in sharing this information and providing some insight into it.

Thank you all who will participate.

Comments

  • Morning. 
      Further to this above email.  Here are my thoughts for asking those questions and to see if we can throw some ideas into a hat for the Organization to come up with something from perhaps some of our ideas.

    Ovarian Cancer Day is in the same month as Breast Cancer Day.  I find I hear so much about Breast Cancer and little tiny bits about Ovarian.  Some ladies on this forum have both cancers.  I would like to find something or an item that would be representative of Ovarian Cancer specifically to help raise money for research, programs, access to care....somewhere along that wave length for Ovarian Cancer. 

    I would like to think along the lines of my title (Diamonds in the Rough) and come up with something to represent that to make it “shine” for others to see and become more aware.  My personal thoughts on this is that our Ovaries are what I would like to say are our ‘hidden gem’.  They are a very important part of the female anatomy and play a big part in our lives for a very long time and can affect a big part or play a big part in our lives.  To me, the ovary is like a what a rough diamond looks like when first found and that it is hidden from us but serves a very important part in our bodies which therefore become our "hidden gem" similar to the diamond they find beyond all that roughness.  I would like to see if we collectively can find an idea(s) that would be representative of that.  We can then take these ideas to OCC and let them play around with things to come up with a product and make sure that the money raised from it would go directly to the areas identified as lacking or more awareness etc.  

    I would also like to see if anyone has any ideas how to bring Ovarian Cancer Awareness up to the level Breast Cancer is currently at.  This could take years or perhaps not.  This is open and voluntary of course but is where my head is at.  If I can assist in this and seeing even a slight bit of this start to flower and blossom, I would be so happy and feel like I would be helping anyone in the future with their own diagnosis.

    So, come on ladies..........what do you honestly think of this?  How can we take what I am thinking and grow it into something or morph it into something else?  September seems far away but it really isn't and when the weather is in its....blah stage.....might give one something to think about to pass some time.