Friday, March 11, 2011

Ovarian Cancer...........SUCKS but it doesn't go away!

I am finally feeling a little more comfortable with this form of media and therefore, have been able to expand my horizons and find other blogs that I am interested in.   Yesterday, on my day off, I took time to peruse the various cancer blogs that were online, specifically Ovarian Cancer.   In the past I think  unintentionally I have avoided them.   Again, denial occurs in various ways and through different behaviours.   In part, I understand why.  My personality is such that often I move into a 'have to know everything' mode, and then have to be responsible for everyone else knowing it all.   When I was first diagnosed, I found that little was known about this disease, and there were no support groups for Ovarian Cancer.   Very different from Breast Cancer!   I felt alone and very discouraged.  Through my research I found this wonderful newsletter that was dedicated to Ovarian Cancer, Conversations.   It was founded and printed by a woman in Texas, Cindy (who has since died - 2003).   I began to receive it on a monthly basis and started to feel that there were others out there like myself and I wanted us to be able to meet and share our stories.  Remember, this was 2001, and as far as I know blogging was not so well known,if it even existed.  Although the Internet played an integral part in my finding women and connecting.  I was able to be connected through this newsletter to a woman just down the road from me in London, Ontario.   Together we met and decided we needed to start a support group...that was in 2002 and the first meeting consisted of four women, and it is still going.  Through this group we began a run for OVCA, a motorcycle ride, donated to have the patients lounge on the gyn/surgical floor revamped (a whole blog in itself), and provided DVD and movies for the Chemo suite.  Almost 1/2 million dollars has been raised which started a Chair for OVCA at our local hospital.  All the funds, and I mean all the funds, go to Ovarian Cancer research!!!!

The problem was and still is, that the mortality rate of this cancer is so high that we have probably said good bye to more people than have continued with us.   As a matter of fact, I am the only living original member, all those who joined in the beginning (29 women, and I don't count anymore) have died.   The hardest one was Nancy the other founding member.   She was the one that was suppose to live.  Her cancer was Stage 1 and so we figured that she would be around for a very long time.    She and I were a team.  The thing about Nancy was that she was great at arranging to have talks given at churches, women's groups, even at the hospital to the nurses.  The problem was that she would agree, but hated talking in public.  So, she would say yes to whatever group was interested, and then call me and say, would you mind giving the talk.   So, she was the engine behind the voice.   We were an amazing team.   And then she died, August 2005, just before I had my second surgery and chemo. About a year and half later I jumped off the bus!   It was just too much for me and so I moved away from the group (it still meets once a month) and pretty much decided that I had had enough.   As my oncologist said one time when he asked me to talk somewhere and I said no, 'you don't want to be the poster woman anymore', and the wonderful thing is I had the courage to say 'that's right'.

So its been a couple of years since I have been actively involved in educating about this disease, at least on a more formal basis.   I have felt guilty many times, I have dealt with 'survivor guilt' on a number of occasions but I knew that I needed to step was just too depressing.   Originally, when Nancy and I decided to start the group, our doctor was not too keen on the idea.   He believed that it might have the opposite effect, the death of so many women on our psyche.   I think to a degree he was right, but I also believe the good that came from the support group out-weighted the negative.   The important part was knowing when to 'step away'!   You can get into a rut, and become the disease, rather than just talking about it.   I did not want that to happen to me.  Life was to be lived, not just exist and it was necessary for me to move away and be a 'regular person' least for awhile, till that beast raised its ugly head again!

I think maybe in some small way I am willing to move back into it.  I haven't decided how or exactly what I will do, but I have opened my mind to the idea.  I have always educated women about this disease on a personal level, never letting an opportunity go by that I might give them knowledge to at least recognize the 'very vague and often silent symptoms'.  My dream is to make Ovarian Cancer as well known in the 21st century as Breast Cancer became in the 20th century.......

So, I am back for good or for bad.......and I have the women who are stilling slugging it out to thank (or blame) for it.......thank you for allowing me back into the fold......we are all amazing women!!!!


Philip Verghese'Ariel' said...

Very informative educative and amazing note on ovarian cancer.
Its really good that you can
teach your readers about it
nice to meet you here
thanks for sharing

l'optimiste said...

ho!! you are one amongst many here - see the sidebar on my blog for lots of other amazing women who have had OC - and they are voices for awareness. Get on ;)

I've been raising funds for ovarian, breast and cervical cancers for the last year and a half. I have raised over £3500 so far. It's a way for me to give something back - and in October I am cycling 400km across kenya to raise awareness...I hope!

We need all the help we can get to raise glad you are back.

Are you on facebook??


Journey-woman said...

Philip - thank you hope it helps many helped me.

l'optimiste - I am back!!!!....have to start treatment in the near future those so may work with are amazing....cycling across Kenya....keep me posted on that..