Friday 14 March 2014

WCSUK - where do we go from here?

Womb Cancer Support UK was set up in April 2011, initially as an online support group based on Facebook. I started the group because when I was going through my cancer journey I felt very alone and scared. I had very little support apart from my husband and my wonderful Macmillan nurse, Morag.

I knew what it was like to be alone when you hear the words from your Consultant "I'm sorry but its cancer".
I knew what it felt like having to attend appointments and treatment all on your own.
I knew what it felt like lying awake at night after the treatment had ended wondering if the cancer was going to come back.

I didn't want other women to go through their cancer journey feeling alone and scared.
I had been thinking of setting up a FB page but never seemed to get round to it, but when Debra (a fellow womb cancer survivor who I had met through a US cancer Facebook page) said one evening whilst we were chatting online about the lack of any UK based womb cancer support "why don't you set one up?" that gave me the kick up the bum I needed to finally do it.

So, on the evening of 11th April 2011, WCSUK came into being. I asked Debra to help out  as an admin on the page and we set about doing what we could to offer support to women who found us on Facebook.

That was almost 3 years ago, and things have moved on a lot since then. The main FB page https://www.facebook.com/WombCancerSupportUK now has over 900 likers and it has spawned a private chat group of over 120 lovely ladies.

It became apparent pretty soon after starting the page that awareness, or rather lack of it, was something that needed to be addressed. So WCSUK began to try to raise awareness of womb cancer as well as being a place for women to come for support.

WCSUK embraced social media and uses Facebook, Twitter, Youtube  as well as these blogs, to reach out to as many women as we can.

Through Debra, we found out about Dr Ellis at Hammersmith Hospital, who is running a research project  investigating the immunophenotype of women aged 40 and under with endometrial cancer.
WCSUK has been able to help find suitable women for the project and are hoping that more will come forward and agree to help out Dr Ellis and her team.

Over the (almost) 3 years since WCSUK started, it has gone from strength to strength. Both myself and Debra were given an award by One Team One Goal, the worldwide coalition building campaign to unite gyneacological oncology practice and advocacy groups.

We both write for Beauty Despite Cancer and I have also writen for other websites including the Saatchi Bill website, lead by Lord Maurice Saatchi which is asking for a change in the law to allow medical innovation.

So, you can see that WCSUK has been vey busy, not only supporting the many women who find us but also raising awareness of womb cancer and raising awareness about what we do so that other women who may need help and support can find us.

I guess it's inevitable that after 3 years its time for a change. Time to refocus and do a spot of soul searching.

After loosing my Mom just before Christmas to a very rare and aggressive cancer, I must admit to having doubts as to whether or not I wanted to carry on with WCSUK. I contemplated walking away but felt that I would be letting all the women down if I did that. So I took some time out over Xmas & New Year to re-evaluate my priorities in life.

So, what I have decided? Well you'll have to wait a while to find out but lets just say that WCSUK is here to stay!