Womb Cancer Support UK

Hello, if you are looking for the blog from Womb Cancer Support UK it has now moved to our new website and can be found here http://wombcancersupportuk.weebly.com/blog

The new website was launched in April 2014; as we moved into our 4th year I felt it was time for a revamp so everything is now together.
http://wombcancersupportuk.weebly.com/

The old blogs from here have been transferred over so all the personal stories from women who have shared their experiences are still able to be read.

We also have a new email address - wcsuk@hotmail.co.uk

Please come over and have a look at the website and help us to continue raising awareness of womb cancer.

xx Kaz xx

Onwards and Upwards!

Well, WCSUK is now into its 4th year of supporting women with womb cancer and raising awareness of the signs and symptoms of womb cancer.

If you missed our Birthday celebrations on Friday then you might not know about our exciting news!

As well as now having a bank account we also have a brand new website http://wombcancersupportuk.weebly.com/
It has been a long time coming but it is now here, thankfully.

I had been planning on getting one done last year but due to personal reasons it had to go on the back burner and then before I knew it, our 3rd Birthday was rapidly approaching so I had to get set too and sort something out.

It is a work in progress at the moment as I am on a steep learning curve, never having done anything like this before.

WCSUK also has a new email address as well which is wcsuk@hotmail.co.uk.

Both the new website and the new email address replace the original ones that were set up when WCSUK first started, so I would appreciate if you would amend your contact details for WCSUK.

There are new business cards on the way with the new details on - which include our new logo that was designed especially for WCSUK by a local artist here on Isle of Bute.

The numbers on the  Facebook page have reached over 950 now and the private chat group is over 120.
We are slowly reaching out to women who want support - it is very hard for a small organisation like us to be seen and heard but with the help of some of the lovely ladies who are part of  WCSUK we are slowly getting there.

Please pop over to the new website http://wombcancersupportuk.weebly.com/ and let us know what you think.

Remember to keep spreading the word about WCSUK - you never know who may need some support one day.

xx Kaz xx

Happy 3rd Birthday to WCSUK!

Today marks 3 years since Womb Cancer Support UK was founded and its been an eventful 3 years.

We've grow from being a small support group with a Facebook page to being the only dedicated womb cancer organisation in the UK that not only supports women with womb cancer but also raises awareness of the signs and symptoms to look out for.

As I mentioned in my last blog post a couple of weeks ago; change is in the air here at WCSUK.

Lots of exciting news to tell you about - only I'm not going to tell you just yet!

You'll have to come and join us on our Facebook page where throughout the day I shall be sharing all the news with you.

So come on over, say hello and catch up on the news. There might even be some cake, (virtual, of course!!!)

xx Kaz xx

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!

WCSUK needs your help!

Raising awareness of womb cancer, indeed any cancer, is one of the main ways we can reduce the numbers or people being diagnosed.

One of the ways that WCSUK has done this in the past is asking women to share their story on the blog.

Some of the women from the chat group have told their story and you can find them amongst the posts here. I also used 4 of the stories and made short videos for the WCSUK Youtube channel which you can find here http://www.youtube.com/user/WombCancerSupportUK/videos

In order to continue raising awareness I need your help. If you have been diagnosed with womb cancer then will you please consider sharing your story?

It can be about any part of your journey; how you felt when diagnosed; your treatment journey; how you felt when all the treatment was over. If you have a particular issue that you want to share then that's fine as well, as long as its cancer related!! You will remain anonymous - I just use your initials.

Please consider sharing your story. You can contact us via the Facebook page https://www.facebook.com/WombCancerSupportUK or email us on wombcancersupportuk@hotmail.co.uk

Thanking you in anticipation. xx

As good as it gets!

I've just had my 4th Hysterversary - 4 years since my hysterectomy. That was followed by chemotherapy and then external radiotherapy.

So by mid July 2010 I had finished my treatment and was looking forward to getting "back to normal" and getting on with my life.

Only it didn't work out that way!

Since then, my health has failed to improve and in reality it has got much worse. Apart from suffering with long term side effects of the cancer treatment - cognitive and memory issues as well as fatigue from the chemo and bowel and bladder issues from the radiotherapy; I have also been diagnosed with an epi gastric hernia; an underactive thyroid and lymphedema in both legs.

Since mid 2010 I have been struggling to improve my health seemingly to no avail! On a visit to my GP a couple of days ago I was told that my health now is as good as its going to get!

Gee, thanks for that! 

I have blogged before about the lack of information that I feel cancer patients are given prior to their treatment and this is an issue that is constantly mentioned by many of the women in the support group.

I know that I am one of  a small minority and that the vast majority of cancer patients recover and manage to return to a life of relative normality but I still feel that I wasn't given the full picture about the possible long term side effects of my treatment.

In this day and age I think it's time that the relationship between patient and Doctor needs to change. We no longer live in that "them and us" era - where patients are not expected to question what their Doctors say. We have the internet and, if used properly, it allows us to research things and arms us with the ability to find out information and helps re dress the imbalance.

Most Doctors, Consultants etc. are nowadays used to being asked questions during appointments and
we, as patients need to be asking questions.
How can we give informed consent for something like an operation or chemotherapy treatment if we have not been fully informed about all the risks and side effects?

I for one, regret not being better self informed before I had my surgery and treatment. I was scared and frightened and it never crossed my mind to ask questions.

This is why WCSUK is trying to empowering women who are at the beginning of this journey by giving them information to enable them to ask questions of their medical team.

Only by being informed about everything can a women truly give her informed consent.

Real friends stick by you through thick and thin!

One thing that cancer teaches you is that real friends are not always the ones you thought they were!

It is a sad fact of life that when you get a cancer diagnosis, you often loose some of the people in your life that you thought you could rely on. Often they are people who may have been in your life for many years and you may even have stood by them through some of their tough times.  At times of crisis we want and need people around us that we can rely on, so it can come as a real shock when they disappear out of your life just at the time when you need them most!

This doesn't just apply to friends; sadly it can also happen with family members.

Why do people do this? I guess we'll never really know the true answer but some people find that they can't handle a cancer diagnosis in a close friend/family member. They may be scared; for you or for themselves. They might think that you don't want them around whilst you are going through your treatment.

There are many reasons why but what we need to understand is that we have to let them go and not carry any anger with us as it sure won't do us any good.

Just as we may find that people we regarded as friends leave our lives we also find that some people who we may know but only as acquaintances, become much more than that during our cancer journey. We may well forge new and lasting friendships, often with people we would never have expected to.

Sometimes however, we loose more than just friends. Occasionally, marriages break up because of a cancer diagnosis as one partner finds they can't cope with cancer being part of the marriage. A husband may find that he no longer finds his wife attractive after she has undergone say, a mastectomy for breast cancer or a wife might find that after recovering from cancer she wants more out of her live that just being a housewife.

Cancer affects many more people that just the person with the diagnosis and it can take time to find a new normal, a new balance in life. When treatment has ended, a cancer patient finds it very hard to slip back into their old way of life. Your whole perception of life has changed. Things that you once took for granted or things that you once thought important, no longer mean the same.

Family and friends often find it hard to accept the new "you" and it can cause friction and fall outs.

In the end however, we have to do what is right for us. It's no good fighting and surviving cancer if you are going to spend the rest of your life doing something just to please other people.

It's like being given a second chance at life and this time you're not going to waste in - you're going to make the most of every minute of it. Those who care most about you will understand that and will be there to cheer you on.

Live life like there is no tomorrow!