Eight years ago today I went into hospital to have a hysterectomy. The operation was scheduled for 25th January but at my pre-op appointment I was found to be severely anaemic so had to go in 4 days early so I could have some blood transfusions, ended having 6 in all, plus 1 during the operation itself.
I was having the operation due to womb cancer, although I had initially been diagnosed with several large fibroids & had turned down the hysterectomy that was the preferred treatment option of my gynaecologist. Then the cancer was discovered and it seemed like I had no option so into hospital I went to have all my reproductive organs taken out.
Plunged into immediate menopause at the age of 46 I thought I'd be able to manage it all until I heard a few weeks later that, despite being told by both my gynaecologist and surgeon that I would probably not need further treatment, I discovered that I did indeed need chemotherapy AND external radiotherapy.
The surgery was supposed to give me back my life, after living with extremely heavy bleeding that had controlled my life for around 35 years. What it actually did was become the start of something that changed my life forever.
The long term side effects of the treatment for what is the most common gynaecological cancer and the 4th most common cancer to affect women has left me with several chronic health conditions that rule my life far more than the heavy bleeding ever did and that's saying something.
Unable to do even the most mundane of things for the past few years, even showering or getting dressed in the morning requires a huge amount of effort, I have spent the last 7 years running a national online support and awareness organisation called Womb Cancer Support UK. When I went looking for specific womb cancer support when I was first diagnosed there wasn't any. I wanted to talk to other women who were going through the same as I was and Facebook seemed like the ideal place to do it so I set up a FB page and the rest is history. The organisation has grown to almost 3,000 likers and the website has around 1,000 hits a week.
In the absence of a national womb cancer awareness campaign we do what we can to spread the word and raise as much awareness as we can. It's shocking to think that over 9,300 women were diagnosed with this cancer in 2014 (CRUK) yet many like myself had never heard of it. It is certainly the poor relation of cervical and ovarian cancer which many women have heard of; although they may not know all the signs and symptoms they will most likely be aware of these cancers.
We are very much a grassroots organisation and rely on the women who have been diagnosed and come to us for support to help us get the word out. They have helped us distribute over 11,000 of our womb cancer awareness leaflets up and down the country but that still not enough to make sure that all women know about womb cancer.
For the past 7 years I have devoted my life to WCSUK and at times it has been tough going but I have always continued with what I do because it's a cause I believe in.
But, there comes a time when things have to change. My health is not getting any better and the effort I put into what I do doesn't seem to be achieving much, or at least not achieving what I want it too.
I feel like I am banging my head against a brick wall at times and the time has come for me to take a step back from all of this, for the state of my mental health if nothing else.
Obviously I can't just walk away from what I do but I shall be taking steps to pull back from the full on 7 days a week I put into running WCSUK and all the social media work and effort I put into trying to raise awareness. However, the support side of things will continue and the private support group we have on FB will continue for as long as there are women out there who want or need support from other women who know, an understand what they are going through. That side of things will always be there.
I had intended to do it quietly and just slip away un-noticed but I feel I owe it to the people who support WCSUK to explain what will happen over the coming months. I have no timescale as such, other than I know I don't want to be doing this for the rest of my life.
As for the future? Well, I can't turn the clock back to a time before cancer but equally I can't see a future where the effects of that cancer diagnosis doesn't play a significant part in my day to day life.
Que sera, sera.
You are my friend!
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