I have come in contact with many women that have spent Hundreds if not thousands of hours learning, researching, sharing, and living as a test subject in trials in hopes of advancing treatments to eradicate such horrible suffering caused by Ovarian Cancer.
One of the first words of wisdom that come from doctors and nurses is " everyone is different" and as patients we are also told to " do not go Googling for information". They say it will scare you... As if the disease is not enough to scare us?
Once diagnosed with a life threatening disease, a feeling of powerlessness overcomes us. The need to understand often starts out with just trying to figure out what is going on with our bodies.
However, often times, when you try to ask your medical team, the answer comes back " everyone is different". FRUSTRATION sets in, and off we go to consult Dr. Google.
We get that there might be some mis-information out in the WORLD WIDE WEB (affectionately known as the WWW). But at 3 am when you can't sleep, there is a part of our core that wants us to be connected and not be so "Unique as to be a freak of nature".
So we innocently start searching for information and options so we can make sense of all that is happening to us. Usually the first set of questions we ask Dr. Google is anatomy and pictures.
Then the realities of how to find the information slaps us in the face, Thus the learning begins -- we have to know enough to know 'how to ask Dr. Google the questions" then to only get " did you mean ????" . Well then you question yourself do I know what I am really asking etc. Then you start clicking on a link and now you are sucked in and feel challenged to find the information you are really looking for.
In my case "what is ovarian cancer" comes back with 2620 possible articles related to ovarian cancer... of course there are 100's of entries that use key words that may lead you to think you have found the right page to go and read. Wrong- it's an ad for gene testing or hospitals, just about everything else but what you are really looking for.
Just ponder this for a moment- The National Cancer Institute has 8020 words related to cancer.
Once the reality hits that we are dealing with a stubborn cancer we can then add to the mixture, surgery, chemo, radiation and a crash course of learning as fast as we can to beat the clock back a little.
The associates degree that we are all hoping to receive is the
"No evidence of disease" or what is referred to as NED. This associates degree of sorts does not get handed out to all of us so the homework continues.
This Disease tends to reoccur with some regularity, so trying to be prepared and being proactive for that news is challenging, wondering if we will be an eligible candidate for trials and if so which one will give us the best chance for remission. Reading and research continues on all fronts.
Part of our homework usually includes interaction with forums. A wonderful source of information. When you listen to them, you would think you are reading a paid professional experts' opinions in in the field, only to find out it is someone who has experienced a setback and doing their homework and wants to share what they have learned in order to give us comfort and knowledge.