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Welcome to 2015.

31/12/2014

As we come to the end of 2014 we can look back on a year that has seen womb cancer finally get some positive media attention and hopefully a lot of awareness has been raised and more women are learning about the signs and symptoms to look out for.

We still have a long way to go but I am hopeful that we can build on what has already been achieved by some of the wonderful ladies who have shared their story, either in the national press or on TV or video.

It takes a lot to step forward and tell your story and these women are incredibly brave to do so, and I am proud of each one of them for doing so.

There is lots more being planned for 2015 so watch this space. Womb cancer is slowly coming out of the shadows of other female cancers and about time too.
There are far too many women who are being diagnosed who have never heard of womb cancer and that needs to change, and it is.

There are some very committed people out there who, along with WCSUK are determined to do all we can to raise the profile of womb cancer.

Please join us and make it your New Years resolution to help raise awareness with us.

xx Kaz xx

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My life since womb cancer.

23/12/2014

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On the morning of 23rd Dec 2009 I heard the words that would change my life – “I’m sorry, but you have cancer” Since then, a lot of things have happened. I stepped aboard a seemingly never ending rollercoaster. I had a hysterectomy a month later followed by chemotherapy and then radiotherapy. Then a week before my 47th Birthday in July 2010, my safety net of regular appointments ended and I was left alone to carry on my life.
How can you return to what was your life BC – before cancer? Everything has changed. Everything is different. Your outlook on life; your hopes and fears are all mixed up. People around you change as well. Sometimes those you thought you could rely on in times of crisis fall away yet others step up to the mark and take their place.
The road since that fateful day has been a long and often lonely one. There have been many hills to climb and many dark deep valleys to cross.
Since the treatment ended, my health has not got better like I expected it too. In fact, it’s got much worse. Since being diagnosed with cancer, I have also been diagnosed with an epi gastric hernia; an under active thyroid and lymphoedema in both legs. I also have severe cognitive and memory problems and fatigue as a result of the treatment. I don’t sleep very well and also have bowel and bladder issues, which is the reason why the epi gastric hernia isn’t going to be repaired any time soon!
I guess you can understand my frustration when people say to me “you’re looking well” as if they expect you to be at the peak of good health the minute your cancer treatment is over. When I’ve told people that I’m not too good they usually say something like “but you don’t have cancer anymore do you?” I’ve had people tell me that all I need is a good night’s sleep or that I need to change my mindset and think positive!
The past 5 years have been tough, much more than I ever thought they would be. Had I known then what I know now there is a very good chance that I would not have had the chemotherapy or radiotherapy. The side effects of the treatment were never fully explained to me and for that I am extremely angry. However I can’t change what has happened and I have to learn to live with the consequences of the treatment.
There have been some very dark times as well recently. Loosing my Mom to cholagniocarcinoma or bile duct cancer last Dec was extremely hard to deal with and I had considered stepping back from WCSUK. There was too much cancer in my life and it felt like it was taking over. In the end, I didn’t and it was only the many kind and positive words from some of the lovely ladies in the WCSUK private chat group that kept me going.
Through what I do with WCSUK I have met some wonderful people; women of all ages, some of whom have fought, or are fighting a much harder battle than I am. Along the way, I have seen 6 women lose their fight because of this cancer, and each loss has touched me deeply.

WCSUK is going from strength to strength; there are more women coming to us as a result of many people handing out our cards. Our awareness leaflets are being distributed across the UK. We are part of various initiatives and finally womb cancer is getting the recognition and awareness it needs, thanks in no small part to some wonderful ladies who are stepping forward and sharing their stories. Recently womb cancer has featured on national TV and in 2 national newspapers and there is a lot more in the pipeline.
5 years is a long time – an awful lot has happened and now is the time to take a step back and think about the future.

Where does the road go from here? Who knows? I don’t have a map; I guess we’ll just have to wait and see where the rollercoaster takes us next!

xx Kaz xx

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New womb cancer research on the horizon.

14/12/2014

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A few months ago we heard about an exciting new project that was being developed that would be looking into the future of womb cancer research and what patients, carers and clinicians feel are the important questions surrounding womb cancer.
WCSUK was asked if we would like to be a partner in the project and of course we said yes. This is obviously something that is very important to us and we are very happy to be part of Womb Cancer Alliance.
They intend to conduct a survey in early 2015 to find out what the most important issues are and I would encourage everyone who has been diagnosed or been touched by womb cancer to register for the survey. It’s important to find out where resources should be focused and how best to move forward in our understanding of what causes womb cancer and how best to treat it.
Please go check out their website and follow them on Facebook and twitter to keep up to date with their work.
It’s good that womb cancer is finally getting the recognition it deserves; we are really pleased that there will now be much more awareness raised of this cancer and hopefully in the near future there will be a much better understanding of what causes it and more importantly better ways of treating it.
There have been several women who have helped to get womb cancer a higher profile recently; it has been featured on national TV and also in 2 national newspapers and WCSUK hopes that things will continue and soon women across the UK will know as much about womb cancer as they do about breast or cervical cancer.

xx Kaz xx

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Is there enough awareness of womb cancer?

10/12/2014

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About 6 weeks ago I emailed Dept. of Health to ask if they intended to run a national awareness campaign for womb cancer. Their reply was fairly basic but they referred me onto to Public Health England as they are apparently the organisation responsible for running the “Be Clear on Cancer” campaign.
So I sent off another email and yesterday, I finally received a reply from them. They stated that they have no current plans to run a womb cancer awareness campaign as part of “Be Clear on Cancer” because BConC “targets cancers where there is evidence that the symptoms are not widely known”.

I would have thought that the fact that many of the women who come to WCSUK had never heard of womb cancer before being diagnosed was proof enough that the symptoms are not widely known about, but I guess they think otherwise.
Time and time again, I hear from women who say they had never heard of womb cancer or endometrial cancer as it’s often called. I was one of them. I had never heard of it; I had no idea where my endometrium was; I knew nothing about the symptoms; I had no idea that I ticked most of the risk factor boxes.

There are many women out there who believe that womb cancer is a type of cervical cancer and that a smear test will pick it up – considering that myself and a few other women I know had clear smear tests 2 or 3 weeks prior to being diagnosed then that’s another misconception blown out of the window.

So, the guy who replied to my email at PHE will probably have come into work this morning to an inbox full of emails from women who have been diagnosed with womb cancer and who all knew nothing about it beforehand. He is probably going to regret suggesting that there was no need for a womb cancer awareness campaign.

In the absence of a national awareness campaign and the lack of a dedicated womb cancer charity then its left to WCSUK to do what we can. We are lucky to have some very motivated and dedicated ladies who are doing as much as they can to raise awareness but we can only do so much; we can only reach so many women.

WCSUK has no funding; no celebrity supporters. We are a grass roots voluntary organisation that relies on women, many of whom are still going through treatment, to help spread the word. Every few days I hear from yet another woman who has just been diagnosed and knew nothing about womb cancer. So please don’t tell me that there is enough awareness – I was unaware of womb cancer 5 years ago when I was diagnosed and nothing much seems to have changed since then.

So WCSUK will continue to do all we can to get the word out about womb cancer and bit by bit we will reach out to as many women as possible. Raising awareness is vital if we are to stop the numbers of women being diagnosed from increasing. How high do the numbers have to go before there is real action taken?

xx Kaz xx

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Emotional and Psychological Impact of Cancer.

8/12/2014

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On Sunday 7th Dec I took part in a live tweet chat about the psychological and emotional impact of cancer called EPIChat run by Noirin O’Neill.
It was a bit hectic to keep up with all the various threads, as these things always are, but with most people using the appropriate hashtag its easy after the event to go back and read through all the threads and catch up.
It soon became quite clear that many of us who have been diagnosed with cancer feel very let down by the system once treatment has ended.
One word that kept cropping up was “normality” and when will it return, if ever? Some of those taking part had tried to find a new “normal” but others had struggled to come to terms with the loss of their previous normality.
Support, or the lack of it, was another subject that was talked about. Most agreed that there was very little of it after treatment had ended and many felt abandoned and left to get on with things themselves. This is something that I have often written about as my own experience was quite traumatic and the reason why WCSUK exists.
It seems that many people are turning to social media for support in the absence of anything in the real world, which is good, as on the one hand as it means that the support is there when people need it, even if it is at 3am in the morning! But is also shows that there is a serious lack of understanding and acceptance that thing’s do not suddenly go back to normal (there’s that word again!!) when treatment has ended.
It was good to network with some people that I hadn’t come across before and I am looking forward to the next chat which will be in January 2015.
You can read the full transcript of the twitterchat here

xx Kaz xx

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Welcome to 2015.

My life since womb cancer.

New womb cancer research on the horizon.

Is there enough awareness of womb cancer?

Emotional and Psychological Impact of Cancer.

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