Elaine’s story

“My mother’s closest sister knew nothing about my mother’s cancer. They had never talked about it, and I certainly could not talk to my Dad about it. So I stored the information away until…”

Elaine Embleton – My Mother Died of Vulva Cancer

Imagine, if you can, travelling around Ireland on holiday for two weeks, aged over 60, being relegated to the back seat of a Mini, having just had a operation that made sitting on a ring cushion a very necessary item to take everywhere.
That’s what my Mum did.  I had NO idea what her operation was and could only guess where. [thirty two years ago that sort of thing wasn’t talked about]  Three years later my husband Brian and I moved from the U.K. to Canberra, Australia. That September we had our first child and Mum and Dad visited for Christmas.  Mum seemed to be in good health although her op. was never discussed.

Two years later, I was expecting our second child in late November.  Earlier that week, Simon our son fell sideways off a beach ball clutching an icy pole and managed to sustain a greenstick fracture in his leg.  The next day I received a letter from my Father to inform me my Mother had Cancer.  No details.  One month later on December 20th, she died. I had a new baby, a son in plaster, it was Christmas.  No way could I go to a funeral.  So I kept busy with my children and got on with life.  I realise now that I was wrong not to allow myself time to grieve for my mother’s death.

Years later, I returned to the U.K. to help my Dad move to a retirement village.  I found amongst his documents, my mother’s death certificate.  It read—Bronchopneumonia, Carcinomatosis, Adenocarcinoma of Vulva.

Cancer on the vulva— how do you get that?  Why?  What were her symptoms?  Was it always fatal?  Who can I talk to or turn to?  My mother’s closest sister knew nothing about my mother’s cancer.  They had never talked about it and I certainly could not talk to my Dad about it.  So I stored the information away until—-

More years elapsed.  We had moved from Canberra to Sydney before our third child was born, then we moved to Perth and finally back to Canberra in 1994.  Sometime later I was in Perth visiting family and friends when I read an article in The Western Suburbs Newspaper, written by Kath Mazella, all about gynaecological conditions and she was setting up a support group to be called GAIN.  I kept the article but found it too hard to deal with.  Eventually I decided to do something about contacting Kath.  Speaking to her was too hard so I emailed her!  It just so happened that week she was coming to Canberra for a Women’s Conference.  We arranged a breakfast meeting and got on “like a house on fire�?!  Here at last was someone who not only knew where the vulva was, but about women’s lack of ability to discuss such matters.  Kath had suffered too.  She was understanding, down-to-earth and not embarrassed to call a ‘spade a spade’, well, a “vulva a vulva�?!  That’s why she set up GAIN.  It has been a long hard road for Kath, but she knows there is light at the end of the tunnel now that she has been able to attract like minded women and influential people as members.  I became a member of GAIN and was almost immediately invited to join the Committee. In 2003 we held our first GAIN National Day.  Now we are planning our fourth.  Gynaecological awareness is on its way to being as well known as breast cancer!

Through being a member of GAIN, I know there are many people I can talk to freely about the things that concern women’s health, be open and honest.  No longer is it “down there�?, but vagina, cervix, labia and vulva!  Finally a place where women can discuss her fears, hopes, worries and concerns and be given, not just some factual information but genuine support from fellow sufferers, people who understand because they have been there too.

I realise I am fortunate not to have suffered cancer whilst I believe that my family’s medical history is very relevant.  Consequently I have knowledge of who died, of what, and at what age.  I have regular Pap Smears and Mammograms and keep myself updated on medical and health matters.  The expression adopted by GAIN, “With Knowledge We Are Empowered�?, is particularly apt.

When my mother’s sister died I was able to go to U.K. to her funeral and I did an extra amount of grieving, for my mother, as well as my Aunt.  Since then, I feel I have been able to move on.  I no longer dissolve in tears at the thought of all that my mother suffered.  I am not afraid of my future.  I feel challenged to encourage all women to take pride in, and to know their bodies.  Talk to each other and make sure your children are better informed and talk about gynaecological issues more freely than my generation, or my mother’s generation.

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