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8 years on.

11/4/2019

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'On 11 th April 2011 I did something that I never thought I would ever need to do - I set up a cancer support organisation.
I had never expected to ever get diagnosed with cancer - I don't think anyone ever does. 
So when I went looking for specific womb cancer support I couldn't find any.
I was living on a small island off the west coast of Scotland and at the time I was the only womb cancer patient. We had a small cancer support group that met once a month but it was all breast cancer ladies and was more of a social get together rathar than somewhere to go for information. I desperatly wanted to talk to other women who had gone through the same as me - I wanted advice and information and didn't know where to go.
So I did what many do and turned to the internet. 

Finding out that womb cancer was the most common gynaecological cancer, I was shocked to find that there was so little support out there. 
I found a Facebook group that had been set up by some American women who had been diagnosed and discovered that there were a few UK women in there also.
One thing led to another and on 11th April 2011 - Womb Cancer Support UK came into being.

Since those very early days of being a Facebook page offering support to other women we have grown to be a national not for profit organisation with a private support group of over 250 women and almost 3,500 followers on our main FB page. Our website gets over 1,000 unique visitors a week and we hear from women every week who have been diagnosed with a cancer that most of them have never heard of.

Which brings me to the lack of awareness of womb cancer. it was very evident back in 2011 when we began and it is still pretty much the same now, despite the fact that it is the most common of the 5 gynaecological cancers.
Yes, you heard me right - there are actually 5 gynaecological cancers yet sadly most women have only heard about ovarian & cervical. Womb, Vaginal and Vulval cancer hardly ever get a mention - mostly down to the fact as I see it, that not many women actually die as a result of these cancers so we don't seem to warrant the same level of attention.

I know some people won't agree with me but after running WCSUK for the past 8 years, all the while living with the long term side effects of the treatment i endured in 2010 I can tell you that the lack of media coverage and awareness for womb cancer is shocking. 
I hear from women every week who say they had never heard of womb cancer before being diagnosed, some of them have been nurses too!!!

WCSUK is only a very small organisation. I work from my laptop on the kitchen table. I don't get paid for doing this - I do it because I can see that there is a desperate need, not only for support for those who have been diagnosed but for more awareness.
Thanks to some of the lovely ladies who are part of our private support group, we have managed to get womb cancer awareness leaflets in GP surgeries across the UK.

Sit in any surgery waiting room and look around at the leaflets on display. You will see ones for breast cancer, bowel cancer, lung cancer, cervical cancer etc but, unless one of our ladies has been there before you, you won't find any information about womb cancer - the most common gynaecological cancer.

​So today we will mark the occasion with a bit of fun over on our FB page and then tomorrow we will return to trying to raise as much awareness as we can.
​
We may not be dying in the same numbers as those with other cancers but sometimes living with the long term side efects of having been diagnosed with womb cancer can be life changing.

​Kaz 
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    Blog posts about life with womb cancer; by me and other womb cancer fighters and survivors. Plus occasional guest blog posts on relevant subjects.

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