Out with the old.........................

Well, as I write this there are just over 13 hours left of 2012.

We at WCSUK would like to thank everyone for their support over the past year, and indeed since April 2011 when we began.

We now have over 560 likers on the FB page https://www.facebook.com/WombCancerSupportUK and 77 over in the private chat group.

We ran a hugely successful second Womb Cancer Awareness Campaign in September and had our ladies turning their profiles peach throughout the month with various peach related pictures.

We had a series of guest bloggers who kindly told their story here and others who allowed their stories to be turned into short videos for our youtube channel. http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

The fundraising for Dr Patricia Ellis's research project is still going well http://www.justgiving.com/Debra-Parry0

As is the petition calling for a dedicated womb cancer charity http://www.petitionbuzz.com/petitions/wombcancercharity

Earlier on this year we were very excited to be asked to become one of the members of "One Team One Goal" - a worldwide coalition that aims to unite all gynecologic oncology practice and advocacy groups in signing and supporting the Union for International Cancer Control (UICC) World Cancer Declaration.
If you can spare a minute, then please sign and share the declaration here https://s.zoomerang.com/s/otogeng and please credit us (Womb Cancer UK - thats our twitter name!!!)

We have also been involved in various other projects that is helping us to be seen by the many women out there who want and need some mutual help and support.

April 11th will see our 2nd Birthday - we had great fun holding a virtual birthday party on FB for our 1st birthday so we look forward to this years celebrations!!

On a sad note, we lost a lovely lady with a wonderful smile in October. Deb had become a friend to many of the ladies in the group and her passing left a void and reminded us just how cruel cancer can be.

On a personal level, I was very pleased to be asked in the Autumn by Macmillan to take part in the publication of a new booklet all about cancer of the uterus. Its full of very good information and statistics and will help enormously with the work that we do as part of WCSUK.

So, 2012 will soon give way to 2013. We wish you all the best. It's sometimes hard to be optomistic about the future, especially if you have recently had a cancer diagnosis or are in the middle of your treatment. But the start of a new year, unlike any other time in the year, helps us focus on the good things around us - family and friends - and being part of WCSUK means that you are not fighting alone.

Lots of love and big hugs xxxx

Coping with cancer at christmas

Christmas is supposed to be a time of fun and laughter; lots of lovely food and drink and family get togethers.
But if you, or a close family member have recently had a cancer diagnosis, it can be a tough time of the year.
If your diagnosis was close to xmas, as mine was, coming on 23rd Dec in 2009, then you may not feel like celebrating at all. Which is fine if you live on your own, or don't "do" xmas like me, but if you usually have a house full of relatives and all the festive trimmings that go with it, then you may have to think again and ask someone else in the family to do the honours this year.
If you are in the middle of treatment then you are unlikely to have the energy or stamina for the full round of festivities on the day.
You may be off your food and/or tired so talk to family members beforehand and explain that you may have to have a lie down or won't be able to face cooking the traditional xmas dinner. Don't feel pressured into doing things because its expected of you - your health comes first and the last thing you want is to make yourself bad.
Emotions can be stretched at this time of year anyway and you are bound to be feeling mixed up, especially if your diagnosis is recent. Try not to take to heart comments made by well meaning relatives, especially if they don't know the full extent of your diagnosis or treatment.
Remember to make sure that you have enough of any medication for over the holiday period and keep details of  your CNS or Macmillan nurse handy just in case you should need them.
Above all, remember that it is just one day. There will be another around in 365 days time!



http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/coping-with-christmas-when-you-have-cancer

The Rich Picture with Macmillan

I was recently asked if I would consider being part of a new range of information booklets that Macmillan were producing  called the The Rich Picture - about people living with different cancers.
I said yes and the resulting booklets have just gone live on the Macmillan website. http://www.macmillan.org.uk/Aboutus/Ouresearchandevaluation/Researchandevaluation/RichPictures/Richpictures.aspx
The 7th one down, entitled The Rich Picture of people living with cancer of the uterus, is the result.
The booklets are  primarily aimed at Macmillan staff, cancer care professionals etc and the aim is to help them better understand the needs and experiences of people living with cancer.

Its a bit different from the usual Macmillan information booklets in that the printed version runs to some 60+ A4 pages but it is full of statistics about real women who have gone through womb cancer (cancer of the uterus!)
Incidentally, I asked why they had used that particular term and and the reply received was that it was because they had used the Thames Cancer Data Registry to find out the top ten most prevelant cancers, and on the registry they had it named as "cancer of the uterus"  so thats the term they went with!

I feel very privileged to have been asked and hope that the booklet will help to shape the future care of women with womb cancer.

Kaz xx

Raising Awareness in the Deaf Community

This is a guest blog by one of our ladies; please read and share. This is an issue that needs to be known about and something must be done to help these ladies.

On Saturday 8^th December, I was lucky enough to go along to a deaf club as my friend, one of their members, was holding a Cancer Awareness Day. She has been diagnosed with the disease and will be having her hysterectomy in January.

Speaking in public doesn’t bother me in the least; I got very used to it in the pub trade, both in my pubs and at district meetings. This would be slightly different as I knew I would most probably be the only hearing person at the club but there were to be interpreters there.

Before the meeting, my friend happened to pass a comment that she was sorry that the MacMillan nurse who had been due to attend wasn’t going to be there as people in the health professions needed to know about the lack of information that is available to the deaf. I realised as the day went on just exactly what she meant.

One of the interpreters had a quick look at what I was going to say and pointed out a couple of places where she may need to explain more so I knew that I would have to speak at a steady pace and then maybe wait for her to catch up with me.

I stood up and started to share my experience of womb cancer with the club members. At the end, I just said that if anyone had any questions....... but I didn’t get to finish my sentence as so many hands went up in the air!

This is when I realised how many deaf women are left in the dark as to health issues. I was there to specifically talk about womb cancer but the questions I was asked covered a whole lot more. I was quite shocked and upset that these women knew so little about their bodies and their reproductive organs. One lady who had had a hysterectomy at a young age had had an ovary left behind but it hadn’t been explained to her about menopause; another lady asked me if she could still get womb cancer even though she had had a hysterectomy. And all because the time isn’t taken to ensure that deaf people completely understand their illnesses and treatments.

I sat and spoke to the interpreters at length afterwards to try to find out more about the difficulties the deaf have. There are many. For one, hospital appointments are too short and, in many cases, the interpreters aren’t fully qualified so have a very limited vocabulary to pass on the information. If a deaf woman gets the diagnosis of cancer, where can she go for help? She certainly can’t pick up a phone, which is what I did. Also, for many deaf, British Sign Language is their first language with English being the second. These languages are totally different so to start researching on the internet for many deaf people is a non-starter too as the language used is just too confusing. My friend backed this up by saying how isolated she felt when she got her diagnosis.

I prefer to hear first hand of horror stories and I don’t spread rumours but a story one of the interpreters told me horrified me. A young deaf woman was ‘sold’ the idea of a hysterectomy as just ‘periods stop’ and agreed to the operation without fully knowing what it entailed. She got married a couple of years later and was absolutely heartbroken when she learned that she wouldn’t be able to bear children. The operation was obviously not explained fully to her. And it also meant that she was kept in the dark while she was in hospital. Can you imagine what it must feel like? To have everyone around you talking about you but not able to understand? Horrendous isn’t it? And I have no reason to disbelieve the interpreter as she is passionate about her job.

I sat for a long time chatting, with the help of the interpreters, with some of the women. Two women told me about some unusual symptoms they have been having with their periods and I advised them both that if they were worried, which obviously they were, then for their own peace of minds they should go to see their doctors. We were also talking about the number of women who get diagnosed with womb cancer in the UK every year (over 7,000 and rising) which the women found startling as they realised that my friend was probably not the only deaf woman in the country to get this diagnosis.

I had to leave around 2pm as I needed to get back to London but before I went, the women thanked me for going to see them and said they found everything very useful. They have asked for something similar in the new year and I think it would be useful to have someone from one of the ovarian cancer charities along as well to answer their queries.

I have also decided to run something similar in London for deaf people having learned a lot from that session and will be working on that in the next month or so. If the women I met that day have so many fears and questions, then probably every deaf woman in the country has the same. And I will be writing letters to anyone and everyone that will listen in an effort to try to help the deaf going forward and I will invite them to the session I run so that they can see the difficulties the deaf encounter first hand. This is something that needs to be changed urgently!

 

Debbie Vince.

Assessment of sexual difficulties after surgery or pelvic radiotherapy for cervical and endometrial cancer.

We have been asked to advertise the following research study on behalf of Dr Isabel White, with approval from the London-Westminster Ethics Committee:

'Assessment of sexual difficulties after surgery or pelvic radiotherapy for cervical and endometrial cancer.

Would you like to take part?

We are interested in how the possible effects of pelvic surgery and / or radiotherapy on women’s sexual lives are assessed by the clinical staff providing your care. Whilst this is a private and sensitive topic it is important to ensure that adequate information and support about this aspect of women’s lives is provided both during and following cancer treatment.

Women and healthcare professionals who took part in stage 1 of this study have designed a questionnaire about women’s sexual recovery.

Stage 2 of the study runs from July 2012 – Feb 2013 (note: this has now been extended to 31st July 2013.) and we would like at least 200 women to complete this new questionnaire so that we can test its suitability for use in oncology follow-up clinics.

If you have completed surgery and / or radiotherapy for womb (endometrial, uterus) cancer between three months and 5 years previously, and are aged over 18 years, we would like to talk to you about the study in person or on the telephone.

If you take part in our study:• You will be sent study information and the new questionnaire by mail to your address• The questionnaire should take about 20-30 minutes to complete• We will provide a freepost envelope for you to return the questionnaire • All the information collected about you during the study will be kept strictly confidential• Your cancer care will not be affected in any way. The study will not involve any more of your time after this.

Your participation will help women and health professionals to improve the discussion and management of treatment effects on sexual recovery.

 If you are interested in taking part or have any questions about the study, please get in touch with the lead researcher at King’s College by contacting Isabel White on 020 7848 3038 or via email: isabella.white@kcl.ac.uk

 This research has been approved by London-Westminster Research Ethics Committee .

 Chief Investigator: Dr. Isabel White.'


If any of  you would like to take part in this study, please contact Dr White directly either by telephone or by email. We understand that this is a sensitive subject but the more women that come forward to take part the mote thorough the research will be. Thank you.

Seeing through the fog!

I used to have an excellent memory! Now I struggle to remember what day it is and why I went from one room into the other to fetch something - but can't remember what!!!

I'd never heard of "chemo brain fog" - nobody mentioned anything about it before I endured my 4 rounds of chemotherapy for womb cancer back in 2010. There was nothing about it in the leaflet that the hospital gave me on the morning of my first session.

Even when,  a week or so after the second session, I noticed that I was getting a little forgetful, no one said "oh, that's chemo brain fog".

It must have been sometime during the 5 weeks of radiotherapy that followed the chemotherapy when I was sat in the waiting room talking to other patients that someone mentioned it! I had to ask what it was!! But of course, I already knew what it was! Loosing concentration; forgetting simple things like my phone number or postcode, even my date of birth that you had to tell the nurses every time you arrived at the radiotherapy unit on a daily basis!!
Then is progressed to not knowing what day of the week it was when I woke up in the morning; walking from one room to another and not remembering what you had gone for. Opening the fridge for something - but not knowing exactly what!!!!

Well, now there has been some research to prove that "chemo brain fog" is something very real!! http://www.healthline.com/health-blogs/healthline-connects/chemotherapy-linked-to-decreased-brain-function-112612

Through the use of PET/CT scans researchers have been able to show that there are changes in brain function. It is hoped that by understanding these changes, treatments could be improved.

Other studies showed that cognitive deficits could last for some years after treatment has ended.

At least we now know that its not all in our head, and these problems are real. I guess we just have to learn to accept our new limitations and not get worked up about them.

Somethings are easier said than done though.

The new normal - by D.V

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

Well, life is starting to get back to some sort of normality now. It’s over six months since I finished my radiotherapy and as I sit here thinking back over the last year, I find myself thinking about the new normal.

Before cancer, I was very active. I ran as a hobby and mostly ran marathons. I love that distance. It’s a battle between my body and my mind and my body always wins. At least I think it’s my body! The pain I go through during races is unbelievable at times (mainly my fault; I tend to undertrain!). My legs are screaming out to stop but my mind tells them to carry on. So maybe it’s my mind that wins? Perhaps it’s both working together for the best outcome?

I am now gradually getting my confidence back with my hobby. I barely ran for almost a year; I couldn’t. The symptoms of the cancer made it impossible and I felt so damn rough anyway, and then the radiotherapy took its toll on me; I suffered from nausea most of the time and lived on Imodium. In fact I still carry that around with me all the time, just in case, and I have a ‘Just can’t wait’ card from the Bladder and Bowel Foundation which goes everywhere with me. Thankfully, I have only had to use that once.

My confidence took a knock with work too which surprised the hell out of me. I was off for five and a half months and found it quite hard to settle back in to my role. I think I am just about getting there with that now. I went back to work two weeks after my radiotherapy finished as I was fed up being ill and wanted to be ‘normal’ again.

There’s that word again; normal.

I don’t think life will ever be ‘normal’ again. I have no womb for a start. Not that I miss that; oh no! Not at all! So the constant fear of symptoms is gone to a certain extent. But the cancer may return at some time in the future and bleeding is one of the first signs. So it seems I still have to be ‘womb aware’ even though I don’t have one! I asked my oncologist how I would bleed if I have no womb. His answer was that any new growths could settle at the top of my vagina and bleed down into it. So I still worry a little.

Also, the surgery changed my body. As I have no cervix any more, my vagina is more like a test tube. I find myself wondering if that would make sex any different. I am in a new relationship and am almost afraid to progress to the sexual side of it. That is definitely not ‘normal’ for me! Luckily he is very patient with me. Phew!
I have also piled on two stones in weight which I am finding hard to shift and that worries me too. I think I look fat and would hate anyone else to see me naked! So it appears I have to build my confidence up with regards to my body too eh? My running should help with that. So perhaps in this, my mind and my body will work together here too?

It seems I have learnt a lot from my running. After radiotherapy I was very tired most of the time. But I thought back to when I first started running and how, to go further, I had to push myself a little more each week. The more running you do, the more you can do. I applied this to my everyday life. I started doing more and more and found that I was coping better and better all the time. Of course, my body smacks me in the face from time to time to remind me it’s in charge and I have to have a couple of early nights. But then at my age (53) perhaps that’s sort of ‘normal’ anyway? I don’t know, I’ve never been 53 without having had cancer!

I also find that people tell me how well I am looking. Sometimes I wonder if that’s because they are surprised that I look (and feel) so well after having cancer. Or maybe it’s because I looked rough before my diagnosis. One of my relatives said the other week that I am looking the best she has seen me in years so perhaps I did look ill and just didn’t know it! My symptoms had been present for over a year without me realising that was what they were. So the new normal for me could be someone who looks healthy!

So, has cancer changed my life? On the outside it appears not. I am running, I am working and I have a good social life. When you look deeper though, it has. And that’s quite hard to get to grips with.

But I’m getting there!

Listen to your body!

One thing that I have noticed since WCSUK started is just how often GP's (still mostly male, sadly) don't listen to the women who visit their surgery with "women's problems"

It also amazes me just how much some of us women will put up with before we go to the GP, so when we do go and are not listened to, or our problems are passed over as something not that important, then its not surprising that we are reluctant to go earlier.

In a newly published document by Macmillan, it was found that 52% of women waited more than a month from the onset of symptoms before going to see their GP. 12% waited more than 6 months.

WHY? If our lives are being disrupted by things like heavy bleeding; pain or unexpected bleeding then why are we not going to our GP's sooner?  Have we been conditioned to believe that its all part of being a woman and we should just put up with it? Are we scared to go in case it turns out to be something serious? Or is it that we don't think  that we will be listened to and our complaints brushed off?

We as women need to start taking control and listening to our bodies. If things start changing in our monthly periods; or we start getting breakthrough bleeding or pain, then we know that something is not as it should be. We know our bodies better than some male GP whose only knowledge of female internal anatomy is via medical textbooks!!!

I'm not knocking GP's here, honestly! I know there are some pretty good ones out there, and the fact that there are now more and more female GP's makes it a lot easier, but we know our bodies best. We have to start listening to what our body is trying to tell us. And we need to act upon that.

When you eventually get to the GP's surgery, you then need to listen to what your heart and your head is telling you. If you don't like what your GP is telling you, or the course of action they are planning for you, then say so. It can sometimes be hard to speak up and say "I don't want to do that" or "I don't feel comfortable with your decision" but we have to.

Women need to start taking control of our bodies and be prepared to have a say in the treatment of it. This means above all, educating ourselves and becoming aware of things that could go wrong.

Most of you reading this will sadly probably already have a womb cancer diagnosis, but we owe it to all our female friends to raise awareness of the signs and symptoms, some of which we probably were unware of ourselves before our diagnosis. According to the new Macmillan publication, almost 50% of women diagnosed said they were unaware that abnormal bleeding was a symptom of womb cancer.

WCSUK produced some leaflets outlining the main signs and risk factors

If you'd like some to give to your friends or to leave in your local GP surgery for other women to read, then just drop us an email at wombcancersupportuk@hotmail.co.uk  and we'll get some in the post to you.

What I wish I'd known before!!!!

They say that ignorance is bliss but I quite actually like to know what the consequences are going to be BEFORE something is done. And there are certainly a lot of things that I wish I known about before I had my hysterectomy back in  Jan 2010.

As women, most of know enough about our internal organs to know when something is wrong or not working as it should be but when faced with something as major as the removal of all or part of our reproductive organs, not many of us will understand the immense consequences of this.
All I was told at my pre-op appointment was that the surgeon was going to move my womb, tubes and ovaries plus some lymph nodes if necessary.
I was still in total shock from the diagnosis 3 weeks ago so didn't think to ask any questions. Now I know that I should have asked, and I know what questions I should have been asking.

Questions like:
What happens to all the other "bits" left inside?
How will it affect me in the short and long term?
Will I ever "feel" right again?

Since my op I've been doing lots of research, not only for myself but also on behalf of all the other women in WCSUK and it seems to be that there is a serious lack of information available to women before they have their hysterectomies and this is wrong because if women were given the correct information beforehand I am sure that it would make life a whole lot easier afterwards.

I never took much notice during biology lessons at school, but I somehow doubt that it was ever explained that the uterus is connected 360o round the body so that if it is removed, as during a hysterectomy, everything that remains moves as it no longer has the uterus to keep it in place.

The uterus not only holds itself and the surrounding organs in place, but it also holds our pelvis together. There is some anecdotal evidence to show that the musculoskeletal changes in women who have had a hysterectomy can be quite pronounced - ever wondered by some elderly ladies have a hump at the base of the neck!!!

If you want to read more about this then check out this article I found http://wholewoman.com/blog/?p=1420

The whole website is very informative and I'd recomend bookmarking it. x

One Team - One Goal

Recently, we were asked to become part of something very exciting - a worldwide coalition of gynaecologic oncology groups and support groups!

Under the banner of "One Team - One Goal" the aims of the project are to bring together all sides in the area of gynaecological treatment and support for women with gynaecological cancer.

We are very proud to have been asked to become a member of this coalition.

As part of the project there is a World Cancer Declaration https://s.zoomerang.com/s/otogeng which aims to " bring the growing cancer crisis to the attention of government leaders and health policy-makers in order to significantly reduce the global cancer burden by 2020. "

Please add your signature to the declaration and share it with as many people as possible. Please would you tick the Womb Cancer UK box down in the bottom right (that's our twitter name, bytheway!!)

We at WCSUK feel very strongly that there needs to be more collaboration between all sides so that all women with gynaecological cancers get the best treatment, advice and support possible and only by working together and listening to each other can this be achieved.

Peach Tears

On a sad note, those of us in WCSUK were reminded that not every case of womb cancer can be treated successfully. We recently lost a wonderful lady with a beautiful smile.
She had been an active member of the chat group, and even when she had moved into the hospice towards the end, she still found time to log on and chat to the other women.

She will be sadly missed by those of us that knew her; however briefly that may have been.

How to be a crone!

Not long after I had my hysterectomy back in early 2010, a female friend, who had had her hysterectomy 12 months previously said "You're a crone now!"

I was quite taken aback at that, until she explained that as a Pagan, a Crone was regarded as a wise woman and a respected elder!

Thoughts of being seen as a wisened up old hag soon disappeared to be replaced by thoughts of being a wise goddess!!!

Ok, maybe thats taking it a bit far, but after some reading up on the subject I began to embrace my "cronehood" and have come to feel quite comfortable in my new skin! My Pagan friends even held a small croning ceremony for me to honour my transition.

And why not! There are many female orientated organisations around the world who seek to honour a young girls transition into womanhood and we as women, celebrate the transition of our sisters into Mothers so why do we not honour the third age of womanhood in the same way?

The word "crone" has become a derogatory word and its time to reclaim it and return it to its proper use - as a way of describing a woman who has lived a full and eventful life and has many experiences and words of wisdom to pass down.

I remember as a young child, spending time with my Grandmother, in the kitchen or walking round the garden. She would tell me what flowers and herbs were good for helping sore throats; what to do with the dried flower heads in order to save the seeds for next year! I know now that she was doing what her Grandmother had done, and all the previous Grandmothers before. They were passing on their knowledge to the next generation.

If you look across many cultures, it is women that hold society together. In our modern day fight for equal rights, have we lost sight of the fact that being a woman is a very important part of who we are?
We are responsible for the next generation; it is us they look to for the skills to get them through the early part of their life.

Even if some of us don't have children of our own we still have a role to play. Being an Aunt can be just as rewarding as being a Mum.

So, at 49 I am approaching that milestone that many women dread. But actually, I'm quite looking forward to it! I intend to celebrate my cronehood; be happy in who I am.

Having cancer made me realise that its pointless stressing about things that you can't change; a wise woman would have know that! I had to learn the hard way, but its a lesson that I won't forget in a hurry!

Honour the wise woman within you!

Peach Ponderings

Here is another guest blog for you to read.

My ponderings are peach because I’ve been on an unexpected journey with womb cancer and, as all followers of Kaz’s WCSUK blog will no doubt know, peach is the colour for womb cancer.

I can’t say exactly when the womb cancer journey began for me because who knows when the cancer joined me. Maybe it took a long time to introduce itself, maybe not, but when I finally found out I had a companion I didn’t recognise its name, I knew nothing about it and I didn’t know anyone else who’d been through what I was experiencing. How ironic that, having been taught never to talk to strangers, there I was harbouring one and taking it with me wherever I went. I’d picked up a hitchhiker without realising.

I’ve since found out that approximately 1900 women die from womb cancer each year in the UK and around 8000 annually in the US. I also know that, far from being alone, there is support out there for women who need it. That support is being provided at WCSUK  by other women who’ve been through womb cancer, or by those who’ve lost loved ones to it. It’s no longer as it was when I was diagnosed, I’m no longer alone and you don’t have to be either.

 

Here a blog, there a blog!!!

During September's Womb Cancer  Awareness Campaign we had some guest bloggers write for us here and it was great to see the response that they got. Some of the stories were quite harrowing and some very inspirational. Many thanks to all the lovely ladies who agreed to write for us.

I'd like to share a couple of blogs posts that I came across over the past couple of days and I hope that you will read them and then pass on the links as I think they make very good reading and deserve to be more widely seen.

The first is by a young man who I first came across a few weeks back when I found a blog post he had written about his Mother who had sadly died of womb cancer. It was a moving blog and I reposted it on our FB page. Shortly after, Dan contacted us via the FB page. Turns out that he is in The Philippines and there is a lack of information and support there for women going through womb cancer. Within a few hours, Dan had set up a FB page of his own to fill the void. He is also doing a blog and he has reposted the original post that first alerted me to him. Please read it and share it. It doesn't matter where in the world we are, womb cancer can strike any women.

http://endometrialcancerphilippines.blogspot.co.uk/2012/10/a-woman-named-jocelyn.html


The second blog post that I'd like to share with you is one that I could easily have written myself. It explains exactly how I felt, and still feel about my journey with cancer.

http://imjustsarahcate.tumblr.com/post/33154691916/i-am-not-your-hero

I hope that you will read and share this blog posts and maybe they will inspire you to write something yourself about your cancer journey. If so, please let us know and we'll glady share it here.

Until next time, stay peachy!!!!

Why we're not into pink!!

Well, Septembers womb cancer awareness campaign has now finished and what a busy month it was.

We had lots of great guest blogs from some very inspirational ladies that were read far and wide, according to the analytics. I really want to say a huge big thank you to the ladies that were prepared to share their stories on here; it was very brave of you.

The videos that were made and put over on our youtube channel were also well received. You can view our uploads here http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

Our turn Facebook peach campaign was a great success. It was very uplifting to log on each morning and see lots of peach related updates. A lot of the women in the group had spread the word amongst their friends so by the middle of the month there were peach statuses popping up from all over the world - it was great!!!

Hopefully we have succeeded in raising awareness about womb cancer and many more women are now informed about the signs and symptoms to look out for.

However, just because September is over doesn't mean that the awareness raising stops. It does become slightly more difficult though as we try to "be seen" amongst the tidal wave of pink that is everywhere - in the media; on the web; on tele; in the shops! It seems anything and everything has had a "pink" makeover.

This is just my personal opinion, but I know its one that is shared by many.
Cancer is cancer. A person who gets breast cancer is just as important as someone who gets womb cancer; or lung cancer; or bowel cancer or prostate cancer or any other cancer. The whole industry, and thats basically what it is; that has grow up around breast cancer in the last 20+ years hasn't resulted in less women being diagnosed with  breast cancer. In fact the numbers have gone up alarmingly.

 I would urge you to read "Pink Ribbon Blues" by Gayle Sulik http://gaylesulik.com/  and form your own opinion but I think there needs to be a radical rethink in the way that cancer research as a whole is funded so that rarer cancers (and by that I mean cancers where only a small percentage of the population are affected) are not left out in the cold.

So, on a matter of principle, I won't be wearing pink during October. I want all cancers treated equally and all cancer patients deserving of equal respect.

Cancer kills - it doesn't care what colour ribbon you happen to be wearing!

One in Three!

Current cancer statistics say that 1 in 3 of us will be affected by cancer at some point in our lives!

It could be you! Or you! Or me!

Actually, it was me!

I was diagnosed with womb cancer on 23^rd Dec 2009.

Womb cancer? I’d never heard of it until I got my diagnosis! I’d heard of ovarian and cervical cancer. I’d even had a smear test a month or so before that came back clear – so how come I’d got womb cancer?

Apparently I ticked a lot of the boxes for risk factors! I was classed as obese; I’d never been pregnant; I had started my periods at an early age; my periods had always been heavy and prolonged.

Turns out I was the perfect candidate for womb cancer – even though I’d never smoked, rarely drank and had been a vegetarian for over 20 years!

Go figure!

So a hysterectomy was swiftly arranged for the beginning of 2010 and then I endured 4 sessions of chemotherapy and 5 weeks of radiotherapy.

All through the treatment, I searched on the internet for information and support. I wanted to talk to other women with womb cancer – women who knew exactly what I was going through and who understood what I was feeling. But I could only find the odd one or two. There must be more out there, I thought. After all, I’d discovered that at that time, over 7,000 women each year were being diagnosed with womb cancer.

 

I used the Macmillan Cancer Support website and a few others but I was perplexed to find that a) there was very little information about womb cancer and b) there wasn’t a dedicated womb cancer charity out there raising funds for research.

After months of scouring the internet looking for information, I decided to do something positive and set up an online support group for women with womb cancer, which I run with another womb cancer survivor.
http://wombcancersupportuk.wix.com/home  

What started out as a small group of women on a Facebook page talking about their experiences and sharing stories has now grown in almost 18 months to a group of over 500.

Women from around the world who, like me, had been searching for other women to talk to. They share their stories; they offer advice and tips but above all they can empathise with each other because they know what its like!

There is still no national dedicated womb cancer charity – but we’re hoping there will be soon. There is a petition running and there are currently over 1,400 signatures. The target is 1,900 – the number of women that are dying each year from womb cancer.

http://www.petitionbuzz.com/petitions/wombcancercharity  

Since my diagnosis, I have discovered that womb cancer is supposed to be a cancer that post menopausal women get, but I was 46 when I was diagnosed, and there are women in the group who are in their 30’s. Sadly, the latest to join us was just 19 when she was diagnosed!

Many of the women say the same as I did – they had never heard about womb cancer.

This needs to change!

Over the years, there have been massive awareness campaigns for breast cancer, cervical cancer, ovarian cancer. Well now its time for there to be one for womb cancer.

We at WCSUK can only do so much; what is needed is a nationwide media campaign by a large cancer organisiation or the NHS. Sadly, it would appear that nothing is likely to happen in the foreseeable future, so it remains for us, the women who have had or are still dealing with womb cancer, to do the awareness raising. So we will continue to do so, because we know just how hard a womb cancer diagnosis hits a woman.  

Present statistics show that around 8,000 women are diagnosed each year, and the numbers are rising.

There needs to be much more awareness of the risk factors and the signs and symptoms to look out for.And it’s not just women who need educating about this. GP’s need to start taking unexplained or unusual bleeding seriously and stop telling women in their 30’s or 40’s that they are too young to get womb cancer.

As many women in our group will tell you; you’re never too young!

Thank you to Margaret MacGillivray for this, and all the other images she created for us during the last few weeks.

I also want to say a huge thank you to all the brave ladies who shared their stories here and the ones who allowed me to use their stories and turn them into short films for our youtube channel.
http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

Together, we will change things. xx

My Story - by SB.

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I was diagnosed with cancer in June 2007, aged 39. I had been for a colposcopy at my local hospital in Ascot and after the examination I was taken into a different room and asked to wait for the consultant who would come to see me. This room had proper sofa's, proper carpet and proper flowers and so I figured I was now in 'proper trouble' as this room was a far cry from the plastic chairs, lino flooring and 9 year old Readers Digests that I was used to.

The consultant, with a nurse, informed me that I had cancer and I would need to go to Queen Charlotte and Chelsea Hospital in London for a biopsy in the next 10 days or so. I called my boyfriend from outside the hospital (at that stage I was still adhering to the 'no mobile phone' signs) and gave him the news. I don't remember what he said, or what I said or for that matter what happened for the next few days. I do remember telling my manager at work whilst we were 'brewing up' together in the works kitchen. I thought I could keep it a secret from everyone but of course she needed to tell her manager and her managers manager. I had to have a couple of short meetings with them as they needed to know if they could do anything for me but most importantly to them - how long would I be off !! I didn't at this point have any answers as I didn't know much more than my appointment date.

The day of the biopsy came and started off more fraught than I hoped it would. I got a local taxi to take me into London and he had very annoyingly left his sat nav on for the previous trip and so we didn't get to where we need to get! In fact, I got out of his taxi at some traffic lights and with my little overnight bag (just in case it was needed) I got into a black cab and I arrived at the hospital more or less on time with a tear stained red face. They assured me I was in good hands I assured them I was crying because of the taxi driver !!!
The London Consultant wasn't best please when I told him my Ascot Consultant told me I had cancer as he said it hadn't been determined yet - so that then added to my emotions as I now didn't know if I did or didn't have cancer - anyway as we now know I DID.

I then had to decide which type of hysterectomy I'd have - the radical were everything is taken out or a type where they leave the ovaries (and therefore the eggs) behind. Up until this stage in my life I hadn't had children but hadn't really ruled them out - however I now had a week to decide if I wanted any in the future. Tough choice. I'm an only child and spoke with my parents about my options and as much as they would have loved grandchildren they also quite fancied the idea of having me around for a bit longer !! The other thing to consider would for me to have 'kept some of my bits' for a bit longer, had a child and then for the cancer to return, and you never know next time I may not have survived, and so the child would then be motherless. We decided as a family to have the lot out!

My operation was scheduled in for 1st August 1998 and so I arrive at Queen Charlotte and Chelsea the day before for them to do all the tests needed. I was in hospital for 11 days which is what was expected, there were no major hiccoughs and everything seemed to have gone well. I was determined to have stitches and not staples and so to make sure, I wrote instructions on both of my hands (where they put the IV line in) and I also wrote instructions on my belly - just to be sure and it worked !

My parents came down from Lancashire and visited me each day, I was surprised and scared by this thought seeing as my dad was 71 at the time and he hadn't driven in London for a l-o-n-g time. Mostly my boyfriend brought them but they did the trip a few times during the day on their own. This wasn't the first time they'd seen me in that state as a few years earlier I'd got into even more trouble when a bowel operation went wrong and I ended up in Intensive Care for 3 days on a life support machine and had three weeks in hospital, so a radical hysterectomy was a breeze!! That was until reality (and the menopause) hit ! Oh what I'd have done for a breeze in those days ! HRT sees me right at the moment. I have to have DEXA bone scans every 2-3years to test my bone density.

I recovered from the operation really well physically but emotionally I wasn't doing so good. I started to see a counsellor at my GP's Practice and she really helped me comes to terms with my loss...even though I hadn't lost an actual person I felt I had lost a part of me and strangely I worried about things like who would have the family photos that my parents have after I had died, and who would I show them to? I don't remember what her answers were to those questions but she did really help me.
About a year after my operation I was approached by a Macmillan nurse again from QC&C and she told me about a group she was getting together to meet up and talk and help each other, it meant me having to commit to 9 trips to London(30 miles away) over the next 9 months and actually 'talking out loud' to strangers! again I was frightened of doing this but I agreed to go and I'm so please that I did. I didn't speak much at first and was even frightened of introducing myself but I met a great bunch of ladies and its 3 years on and we still meet up 2 or 3 times a year....but this time in bars and without a nurse present !

Whilst I was in hospital my Macmillan nurse put my name forward for a 'Special Day' via the Willow Foundation. Luckily I was deemed ill enough to receive one of their weekends (ha ha) and I decided to spend my 40th Birthday in London with my boyfriend - we had 2 nights in a hotel on Park Lane, went to see Mama Mia, the terracotta soldiers at the British Museum, had a tour of Lords Cricket Ground, ate at Bibendem, had a car for the whole time and we were even give money to spend in incidentals, money at the hotel for room services and we were picked up and dropped off back home - it was perfect. The Willow Foundation were amazing and I knew I wanted to 'pay them back' for what they had done for me. I spent a few months racking my brain to think of a way and then came up with the idea of super soft hats for people receiving chemotherapy. I didn't need to have chemo but my mum did for breast cancer 10 years ago, and just so my dad didn't miss out, he has since has prostrate cancer and recently had a huge operation for skin cancer ( the three of us always do everything together !!!!). Its probably a good thing that I dont have any siblings !

I set up a website named Retail & Therapy www.retailandtherapy.com. I donate some of my proceeds to Willow and I hope to work with some other charities too so that they can promote my site and I can donate. I keep the costs as low as I can so that I am able to donate as much as I can. I have the beanies made in the UK by a lady who herself received chemo for breast cancer. The scarves come from Paris.

I'm coming up to being 5 years clear of cancer in August this year and I'm looking forward to cheaper travel insurance ha ha. I still am aware that once you get to 5 years its not a miracle date when everything gets better and this was brought to my attention even more so recently when one of my dear friends from the hospital meet-ups celebrated her '10 year clear' on 10th December and within a day or two found out her cancer was back. She had her operation on Tuesday this week and is currently in ITU due to an allergic reaction to a pain killer. The surgeon is sure the cancer has all been removed but she has a big hill to climb and another 6 months of chemo to get through.

My priorities changed after I had cancer, I decided to go down the healthy eating route (the words horse and stable door come to mind) I got myself an allotment about 1 mile from home, I reduced my working week to 4 days ( I REALLY missed the money for the first few months but soon adapted and would recommend it to any one) and I set up the website. I never realised it would take up so much of my time but it is a labour of love and each donation I make to charity makes it all worth while. I really enjoy my time at the allotment too and it is something I don't think I'd have thought of doing before having cancer. Plus, all the 80 year old men do my heavy digging for me - they moan but they love it really and I get invited to their BBQ's where we swap recipes for courgettes !

Thanks for reading this, I wish you and your loved ones all the very best.

Check out the lovely beanies and scarves here  http://www.retailandtherapy.com/index.html

My Story by L.S

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I write fiction for a hobby, and it’s always said a proper story should have a beginning, a middle and an end.
My womb cancer story began in February 2010, just before my 58^th birthday, when I had a very minor post-menopausal vaginal bleed.

Being an eternal pessimist my first reaction was ‘oh no, I must have something seriously wrong’. I immediately booked an appointment with my GP and was seen very quickly, within a couple of weeks I think. All through the waiting time my mind raced back and forth between ‘it might be just an infection’ and ‘what if it’s something serious?’ I never actually used the term ‘cancer’, feeling almost as if it was a dirty word.

Well, it wasn’t an infection so I was referred to the gynae department of the local hospital. Again the appointment came quite quickly and I was still quietly hoping for a happy ending, even though my mind told me there was no such thing.

My first gynae visit was nearly my last! The doctor was unpleasant, almost brutal in her examination and the nurse wasn’t any better. Anyway, I left the clinic with as much information as I had when I went in—zilch! Except now I knew I’d have to be admitted as a day patient for a hysteroscopy, which, as it turned out after I was anaesthetised, couldn’t be performed. The gynae surgeon drew a little diagram of a closed cervix, told me that was what mine looked like and said she’d keep an eye on me and I might need an MRI scan. ‘See you in six weeks’. Goodbye.

This is the point where, had I been on the ball, I’d have started asking questions and pushing a bit, but being a naive old thing I put my trust in the medics and told myself things can’t be that bad because no-one seems to be too worried. I’d had an ultrasound scan sometime along the way but my memory is a little fuzzy these days so I can’t remember at exactly what stage in the proceedings that took place. I do remember being told there was ‘some thickening’. My lovely friends kept reassuring me that it was probably just fibroids or something of that sort, I’d probably end up having a hysterectomy and wouldn’t I feel wonderful afterwards!

A couple of months rolled by and my minor bleed turned into a permanent stringy discharge, rather like egg white. Still no word from the hospital and by now I was starting to worry again so I thought it might be an idea to chase them up, which I did. Yes, they said, there is a bit of a delay with appointments but it shouldn’t be too much longer. I did eventually get my MRI scan, then another long wait until finally …yessss! I got to see the gynae consultant for my results. Which, despite my previous pessimism, came as a terrible shock. I remember her words still. ‘I think we should do a hysterectomy…it could be cancer.’ The bottom dropped out of my world at that precise moment.

My husband was waiting outside for me. I couldn’t tell him till we got to the car park, then I repeated what the doc had said and promptly burst into tears.

There have been a lot of tears since that day.

Then my surgeon popped off on holidays and left another doctor to break the news a couple of weeks later that yes, it was cancer, and I’d need radiotherapy.

My brother lives close to the hospital that I went to for the RT—an hour each way for me. When he heard the news he invited me to go and stay with him so I wouldn’t have to travel. I remember being quite indignant at the suggestion and told him ‘I’m not going to put my life on hold for this thing.’ I didn’t either. I was lucky enough not to suffer any real side-effects so life went on almost as normal, although, looking back I know I was more short-tempered than usual. And tearful, always tearful.

I was introduced to a wonderful oncologist who suggested that I should have chemotherapy as well. The mere thought of chemo terrified me and after much discussion with my husband I decided not to take that option. I’ll never know whether or not it was the right decision because I had a recurrence in April 2011, which may or may not have happened if I’d taken the chemo route—who knows?

This time I was seen to by a wonderful team of doctors and nurses. I had a urostomy in June 2011 and got so bored in hospital I walked the corridors day and night until I was discharged, after which I carried on walking and exercising until I was properly fit! We knew chemo was the better option this time and as it turned out my terror was unfounded. Again I was quite fortunate to not suffer too many side-effects, although I did find myself getting quite tired most afternoons. And although I tried not to let fatigue get the better of me I realised in the end that I’m not superhuman, I’m the same as everyone else and sometimes I just had to give in to it.

I think my odd sense of humour and determination not to let this cancer beat me has helped me through, along with the massive support I’ve had from friends and family—and of course WCSUK. My emotions have taken a battering and I still sometimes find myself crying for nothing in particular. Hindsight is a wonderful thing, and although I saw my GP as soon as the first symptom showed, I know now I should have pushed to get the original gynae team off their bums!

I think my womb cancer experience has made me more outspoken, more confident in some ways and I’m no longer afraid to utter the word cancer. It’s as much a part of me as is my plastic urostomy pouch!

The end of my womb cancer story hasn’t been written yet.
For now, I’m a womb cancer survivor.

 

 

 

My story by C.H

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I remember very clearly been diagnosed with endometrial [womb ] cancer which was 2 days before Christmas.  I had first been to see my GP 9 months earlier with bleeding between periods; I was not concerned as I had a history with polyps which was what the GP found. I was referred to hospital to see the gynaecologist. In June I had cervical polyps removed in outpatients and with relief I thought that was the end of the matter. I then continued to have bleeding between periods and delayed going back to the GP hoping the symptoms would go away or that the symptoms were related to my age being 43 years of age and hitting the menopause. Never did I think I had womb cancer. In August I decided I needed to go back to my GP, she referred back to the gynaecologists and the GP also arranged an ultrasound. The doctor at the hospital wondered why I had been referred back.  Luckily she spoke to the consultant and made arrangements for me to come in to have a hysteroscopy under a general anaesthetic.

The first mention of cancer was after the hysteroscopy when the consultant came to me. She had found a polyp in the womb which she suggested could be nasty but highly unlikely to be cancer due to my age; she arranged to see  me back in clinic 8 weeks. I was left on my own very upset and confused. Why if it could be cancer was I waiting 8 weeks for the results? I remain very anxious. A couple of weeks later I spoke to one of the consultants I worked for who very kindly speeded up the process to get results, as I wanted to know my histology results were ok before Christmas!!

December 22nd I arrived home after a busy day at work and was just about to go out on a Christmas do. There was a message on my answer machine from the consultant to contact her secretary. I knew then something was not right as consultants don’t usually leave messages on answer machines to contact with them urgently. As it was late I could not get hold of anyone. Burst into tears as I realised my life was about to completely change and was very frightened. Decided still to go out on Christmas do to try cheer myself up but only told 2 friends what was happening. Still managed to go to work the next day. I was trying to be run a busy clinic and spent half the morning trying to contact the hospital to speak to the consultant and specialist nurse. I did not want to tell colleagues what was happening at this stage.

A friend came with me to the hospital in the afternoon and I was given the results by the specialist nurse and the consultant came in later. I knew then it was womb cancer and that I needed a hysterectomy before they told me.  The consultant said I was not going to die but the word cancer felt like a death sentence.  Working in a cancer hospital for several years made me very scared of what could happen. I was told it was aggressive as a grade 3 tumour. I was also told if you are going to get a cancer then womb cancer was the better one to have as had good cure rate; this left very confused. I was also shocked that I would have a surgical menopause. Children were now out of the question. After been diagnosed I decided to be up front with my colleagues as I did not want mix messages and incorrect rumours.
 

The hardest part was telling my family, this was not the Christmas we wanted. Never forget walking into my Mum’s living room and breaking the bad news. The family were very supportive.

The following week I tried to go back to work, got as far as putting on my uniform and realised that it was impossible to back to working in clinics when I was now a patient myself so the uniform went back in the wardrobe and I went off sick.

One my most vivid memories were going for my first appointment to see the gynaecologist oncologist. My appointment card had my name and oncology clinic written on it. I was so use to dealing with other cancer patient’s appointment cards so this was very surreal; the tables had been completely turned on me.

I found it very hard to keep focused on what the consultant was saying did I want my lymph glands removing? Did I want a laparoscopic or an abdominal incision?  Luckily I took a friend to be second pair of ears as I was completely overwhelmed.

I had the surgery on the 3^rd January 2006. I recovered very well but was surprised the hot flushes started as soon as I got back from theatre. I decided I wanted to remain positive: hardest part was waiting for the final results after the operation to see if I needed further treatment. The consultant gave me the great news that it was stage 1A. I rang my family and then called into work and told everyone the good news. I was over the moon.

I remained on a high for several weeks but reality began to hit me - especially when I went back to work 4 months later. I started feeling very isolated and anxious; it was hard for some friends and colleagues to understand what I was going through. There was no support group for womb cancer. I wanted to meet other ladies with womb cancer similar to my age. In the September after the diagnosis, I  hit meltdown. I got to the point when I needed to make changes to my life or risk going off work with stress. I cut my work hours down, dropped some of work responsibilities; this meant a pay cut but was worth it. I joined a gynaecology support group in Liverpool. I was referred for counselling. Life slowly started to improve.

 Hospital appointments: These were very hard at the beginning but became easier. I took the day off work and went for a nice treat afterwards shopping; coffee and cake!

The first Christmas after diagnosis was also difficult it was like going through the whole process all over again and I think it can take years to get over the diagnosis. For each anniversary I got a bottle of champagne to celebrate with my friends. I have finally been discharged this year after 5 years and it nice to know now I do not have to worry about the cancer coming back. I appreciate life much more and try not to take things for granted. I did fundraising for the hospital that treated me with a Hafla- a belly dance party.

 I now hope to continue fundraising for my local hospital that treated me. I joined a womb cancer support group on face book so I can now help other women like myself. We are group of women who want to raise the awareness of womb cancer to save more lives and support each other. 

No woman should fight alone.

Its a Peachy Birthday by D.P

International Womb Cancer Awareness Day falls on my birthday. As a womb cancer survivor, I can view that as either very appropriate or as taking things just a tad too far... The jury’s still out, but I did have a good day so I’m not complaining. You might ask what I did that was so special – the answer is that I went to work.
Working is something I’ve done all my life; be it at my studies, at being a mum, at doing my job or at anything else I’ve put my mind to. So many things mesh together to make a person who they are and what I do is a big part of my identity. I guess it defines me in some way. So there I was at work, having a good day, and it reminded me just how very lucky I am.
As a womb cancer patient – and whether I like it or not, that’s officially what I am until the five year monitoring period is up and then, hopefully, never again although, “In this game we never say never,” to quote my surgeon – the one thing I soon got told was that I had to do as I was told.
Now, for a stubborn woman, that was not exactly music to my ears. I said I’d try, I’d do my best, but I wasn’t giving any guarantees. Or maybe the words ‘I’ll try’ came out of my mouth while ‘Yeah, right’ was going through my head. I can’t be totally certain, I don’t recall the exact details of the day I was given the news of the diagnosis, but if you know me well then you’ll draw your own conclusions I’m sure.
‘My Life In Their hands’ wasn’t exactly my favourite title at that point.
At my most ill before the cancer diagnosis, when I couldn’t breathe properly, I couldn’t walk properly and I was in almost constant pain, the one thing I wanted was normality. It was a psychological need that over-rode what my body was telling me and it’s where pushing myself to go to work came in. I got called stubborn – no surprises there! I got told to be kind to myself. I got asked what I was doing there when I should be at home in bed. All kindly meant and the answer was that I was trying to still be me. I needed the normality of doing the things I would usually do and I didn’t want to be beaten by a body I felt had let me down so badly. If that makes me stubborn, so be it. But it also makes me a fighter, it kept me sane and it gave me something to aim for, because I already ‘knew’ before the official diagnosis that I had cancer, I simply didn’t know what sort. And when I was finally told what sort, I’d never heard of it before. And that’s just plain wrong.

My Story by J.H

August 2011 was a momentous month for me, in more ways than one. I had my two sons visiting from Australia with their families, and life was pretty damn good.
I had felt incredibly tired for weeks – possibly months, but had put it down to the excitement of getting everything ready for their visit, and running round visiting people and places with them, and having great fun and laughter with all the joys that having a 15 month old baby in the house brings.
I was 53, soon to have my 54th birthday in September.  I was having a horrible time with the menopause – had I finished my periods or not?
Every time I thought  I had, I had such a disappointment to find that, actually, after 6 months of having no periods, along came another. I didn’t pay too much attention to it to be honest, I was far too busy getting on with life – planning for the visit, running the Canine Charity that I had founded with a couple of friends, and looking after my 80 year old mum. 
However, just before August I started to bleed after nothing for 9 months, and just didn’t stop. I was so fed up after four weeks of bleeding that I decided to pop to the doctor to ask for some tablets which would stop the bleeding and make me feel lesstired.  What a shock when I saw him and asked him for some medication, when he said ‘Yes, I could certainly do that for you.  But I wouldn’t
be doing what is best for you. Bleeding like this and for so long, is not usual and we need to get this checked out – it will probably benothing at all, but it needs to be checked’.

There and then he phoned and got me an appointment for the following week, to see a Gynaecologist at a local hospital.  I thought it would be a quick visit, possibly an examination and that would be it. But no. After taking my medical history – problems with very painful periods from the age of 13, a son born by Ventouse, the next by emergency C Section, endometriosis and fibroids - I had a smear testand was booked in for various ultrasound scans and a hysteroscopy.

On the 15th September, my sons and their families went back home, and the house was quiet again. I was really sad, missing them from the outset, but that happens every time. I had the scans, and went for the hysteroscopy, but the doctor couldn’t manage to do it under a local anaesthetic, so I had to be admitted for a general, which was done on the 28th September 2011 – it’s strange how dates have now become very important to me! 
I was in and out on the same day, and went home armed with an appointment to see the consultant in 2 weeks time. However, the very next evening I had a call from the hospital asking if I could pop along to see the doctor the following day.  I explained that I already had an appointment for a fortnight, but the secretary insisted that the consultant needed to see me thenext day.
That is when I knew.

So, on the 30th September, I went along with my husband, after a sleepless night, and I remember sitting in a different room than usual to see the consultant, a room with lots of different jerseys from various football, rugby and cycling stars. I remember staring at them as the consultant explained that I had womb cancer.
I remember hearing the words, and listening to how, if I had to have cancer at all, this was the ‘best one to have’, but carrying on looking at the framed jerseys on the wall. No tears. No hysterics.
Just a calm acceptance.

I looked at my husband, who was sat next to me, clutching my coat and my handbag.  He was a deep shade of red, and staring at me intently. I kept thinking that we had only just waved our sons off back to Australia – what am I going to do without them near?
I heard the consultant ask me if I was alright, and I said. ‘Yes, I’m fine thank you – so what happens now?’

What happened next was that I was referred to the Christie Hospital. Because I was overweight the consultant I saw decided that he would prefer me to have an apronectomy as well as a Total Abdominal Hysterectomy, so I was also referred to a Plastic Surgeon. A date was arranged for surgery, but I was phoned a week earlier to see if I could go in the next day for surgery. I agreed, and had surgery on 16th November 2011.  I woke up in the Critical Care Unit, after having an
apronectomy, total abdominal hysterectomy and bilateral salpingo oophorectomy, and had a wound which was 20inches long, which took some getting used to, but I had the most fantastic nurse in the CCU, who got me through the 3 days whilst I was in there – I will never forget him.

I was allowed home after 7 days, with the District Nurse coming in to check on me every day. However, the day after going home my 20inch wound decided to come apart, leaving me with 3 pretty big cavities. The disrict nurse sent me back to the Christie for a review, but it was
decided to pack the wound and dress it on a daily basis. So from November through to April 2012 I had a daily visit from the nurse to pack and dress the wound, and a weekly visit to the dressings clinic
for a check and a photograph of the wound to see how things were progressing. Through these weeks there were several dark days, and I was so thankful for my circle of family and friends.

In April I was given the ok to be handed over to the Oncology team. The histology had showed that the cancer had grown into my cervix, so I was prescribed 20 external radiotherapy sessions, and 19 hours ofBrachytherapy (internal radiotherapy). I got through the external sessions with nausea, bowel and bladder problems, and shocking fatigue, which I had expected.  The 19 hours of Brachytherapy was very challenging – not painful, but not being able to move for 19 hours, apart from when the nurses turned you to rub yourback, was difficult. The worst thing was the boredom, and not being
 able to eat or drink much because of being flat on my back, but at 5.30am my 19 hours were up, and I had the tastiest tea and toast EVER!

I experienced very bad back and leg pain a couple of weeks after the Brachytherapy, so the Oncology team organised a CT scan, which showed up a problem with my liver and with my lymph nodes – but no cancer in my pelvic region. Fabulous news!

The hardest thing in dealing with all this was having my sons so far away and having to tell them, and also telling my mum. Watching my husband trying to stay positive and deal with everything was
terrible too. I just wanted to gather everyone who is special to me together and keep them near.

I was very ignorant of the symptoms of womb cancer, and I am especially thankful to my doctor for acting so promptly.  From what I hear doctors like mine are few and far between.
 I have done so many positive things since my diagnosis – after not having a proper holiday in the past five years I have been on two in the past few weeks, I took part in the Sport Relief Mile (only
walking it, but it felt great!), after being a singer up to two years ago I am now singing again and have got a ‘gig’ lined up for Christmas! 
Cancer hasn’t beaten me – it made me evaluate my life and get on and enjoy it.

So here I am, almost 12 months after my diagnosis, 3.5stones lighter (with more to go!), a very strange body shape (I lost my belly button as a result of the apronectomy!), still having good days and bad, but let me tell you – life is damn good!

Why we need to raise awareness.

Today is 20th September. International Womb Cancer Awareness Day.

I had never heard of womb cancer before my diagnosis - and I'm not alone. There are many women in Womb Cancer Support UK who were unaware of it also.

This is why this awareness campaign is important - if women are not aware of womb cancer then how can they know if they are at risk of getting it?
We are all aware of the various campaigns around for breast cancer; cervical cancer; ovarian cancer but there is nothing for womb cancer.
That is why we at WCSUK are determined to change things!
This is our  2nd awareness campaign! Although we do raise awareness throughout the year, we felt there needed to be a full on campaign to get womb cancer out in the open and get women talking about it.
We are very grateful to the women who have "told" their story - either by writing the various guest blogs that have appeared here during September or allowing their story to be turned into a mini video that have been put on youtube!
You can check them out here! http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

When I got my diagnosis I felt alone and scared! Living on a small island made me even more isolated - there was no one I could talk through who knew how I was feeling.

That was the main reason behind setting up WCSUK - I didn't want other women to feel so alone as I did. The main group now has 500 followers on FB and we have a closed chat group of over 70 women who support each other through the ups and downs of having womb cancer. Some are 5 years+ in remission - others have only just been diagnosed.
The one thing that stands out is the age range. Womb cancer is often regarded as a cancer of post menopausal women but we have women in the group who are in their 30's and 40's, Our latest lady to join us was 19 years ole when she was diagnosed!

This above anything highlights why we need awareness campaigns like the one we are running throught September. There needs to be much more done to highlight the risk factors and the signs and symptoms to look out for.

Sadly, we can only do so much. We are a small group, with no financial backing. But we have the support of some lovely women who are helping to spread the word bit by bit and if we can get more women to be "womb aware" and get any abnormal bleeding checked out by their GP, then we are doing something positive.

Thank you again to everyone who has read the blogs; watched the videos; shared the links; changed their profile picture to something peach. It all helps to raise awareness.

Always remember - no one fights alone!

Kaz xx

©WCSUK

My Story - by S.B

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

Being in our 60s, “romantic interludes” between my husband and I are for high days and holidays! It was two days after one such occasion, his birthday, that I started bleeding. My last period had been about 7 years previously and the bleeding I had reminded me of either the first day or last couple of days of a period. Not too heavy but needing a pad. About 9 years previously I had had a polyp removed from my cervix which had caused heavy bleeding and I just thought it must be another of these.
 My GP examined me and couldn’t see anything. She did not think there was anything to be concerned about but said if I wanted she could refer me to the hospital for a thorough examination. When I went I saw the Macmillan CNS Gynaecology/Oncology who examined me and took biopsies. She said there was thickening and my cervix was “spongy”. Without her saying it I got the strong impression that she thought there was something seriously wrong, especially when she asked if I had anyone with me.  I hadn’t.
When I went back for the results and saw the Consultant Gynaecologist I had my daughter with me while my husband waited in the Waiting Room. The Senior Macmillan Cancer Nurse was there and there was a box of tissues on the table. I was told the results were bad, I had endometrial cancer and possible cervical cancer. It was Carcinosarcoma, a rare and aggressive type. My daughter had hoped I was being pessimistic and had not expected this. She was extremely upset as was my husband. I was quite calm as I had expected bad news.

I had my operation and was put in a Gynaecological/Oncology Ward amongst other ladies who were in for non cancer hysterectomies, prolapses, etc. I was very ill after the operation and they couldn’t figure out why my temperature was so high and why I was so sick. For four days and nights I had doctors coming to me for blood samples, I had “umpteen” drips of various things and the worst thing was I overheard other patients talking about how difficult it was to sleep with the doctors coming to me throughout the night.
I had combined chemotherapy for one dose but it made me very ill and my liver was being affected. They cut the drug out that can cause liver damage and gave me another single session. Again I was very ill so they decided to stop it. They said my body could not cope with the chemotherapy.
The upside is they are pretty confident they got it all after removing my uterus, cervix and lymph nodes and in a way my husband saved my life.

So ladies do not ignore any unusual bleeding.

My Story - by JH

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I've never liked fair ground rides; I remember once screaming so loud on a ferris wheel my mum had to get it stopped for me; but in May 2011 I started on a rollercoaster ride that I couldn't stop, I just had to hang on for the ride.
My journey started by a simple trip to the Docs, an oddity for me, I very rarely went. I had found a small lump on my vaginal wall, quite painful. I thought it was a cyst, which it was, but my GP noticed something; she said I looked really pale, anaemic in fact and ran some blood tests.
I got an urgent call the next day, they wanted to see me straight away. I was borderline needing a transfusion I was so anaemic. My GP asked me about my periods.  I had always had really heavy long periods, from being 18, they had got worse over the last three years, but I had just dealt with them.
My GP was fab and said it needed looking into. She referred me but I heard nothing.  In the meantime she fitted me with a mirena coil. This lasted a week,  I had a bad reaction to it and hemorrhaged, so my GP removed it and was horrified by the amount of blood and clots.  She said I needed to see a consultant urgently; things were not right. I was put on meds to slow the bleeding, but it didn't stop, this was in October.
She got on to the hospital, they finally sent me an appointment for November.
November came I was still bleeding, I saw a young registrar who took biopsies and examined me, did some scans, didn't say much, just said I needed more tests!
December came, I was given a hysteroscopy, it was agonising, I was still bleeding, no-one really answered my questions.
By now I was feeling quite ill; my GP was seeing me every week, checking my blood levels and giving me lots of support, hounding the hospital for answers and results; she felt now my only option was a hysterectomy.
January came; the hospital said all biopsies were negative. I had an enlarged twisted tilted womb, with lots of cysts and fibroids;  however they wanted to try an ablative first, I said I felt a hysterectomy would be better, but the consultant said they had to at least try, so I put my faith in them.
January 25th the ablative failed; my womb was too enlarged and twisted.
By now I was in agony. I spent a week.in hospital after the ablative, but no-one seemed to listen; they just gave me pain meds and more meds to slow the bleeding.
My GP was outraged; she wrote to the hospital to speed up my appointment, I was by now unable to work,
The hospital finally saw me in March.
The consultants first words were "I hear you think you need a hysterectomy", I just broke down; all my agony, pain, frustration just flew out. I think I even screamed at him; another consultant came in, "we will see what we can do" she said. I walked out feeling like a mad women who was faking it and putting on.
I rang my GP in floods of tears; she reassured me she would hound them again.
The letter came a week later; I had to see another consultant the following week.
Progress I thought! The appointment was brill, I could have the op in May; a long wait but I could manage, even if by now I was on 45 tablets a day and still off work.
The day came; they wanted to try it by Lap, I put my faith in them. I came round on HDU, the operation had took 7 hours, I ran into breathing difficulties as my womb was so hard to remove, they had finished up leaving my ovaries and cervix, no biggy I thought at least no more bleeding, after a long year the ride was over.
I came home 4 days later but I still felt so ill, just part of it I thought.
On 30th May 2012 at 1pm the hospital rang; could I come in tomorrow /I knew then it had to be bad news. I wanted the roller coaster to stop, but the driver wasn't listening!
I didn't sleep; my Hubby and I arrived at the hospital at 10:00 am; finally at 10:45am we were taken to see a consultant; the same one who asked me why I wanted a hysterectomy! She dropped the bomb shell;  I just wanted to scream at her. I was being transferred to Sheffield for my care; Chesterfield didn't deal with cancer! All I could think was,  thank god for that!
Sheffield rang me the next day; "could I be there by 4:00pm"; god its happening fast, I thought, but good!
Mr Gillespie was brilliant; he talked through what had been found but said it was hard to know exactly as my womb had been shredded! "What??" I asked, I didn't know, Chesterfield hadn't told me! He was appalled;  He said my treatment had been dealt with wrongly from the start, but we had to move on.
I was booked in for a open abdominal BSO and cervical stumpectomy, plus abdominal washings on the 21st of June. I saw another consultant Miss Kew, who would do the op;  a consultant anaesthetist Miss Bland, because of the issues I'd had before, and my CNS Angela, they were all amazing. For the first time I felt listened to, I felt confident in them.
My GP rang me when I got home, she was stunned with my diagnosis but she too was happy I was at Sheffield.
Op day came; the nurses and doctors were wonderful, so attentive. I had a melt down, think it finally hit me.
I finished up on intensive care but Miss Bland never left my side till I was stable. The op went well but they couldn't get my pain under control, or my blood pressure.
A week later I was home, sore and tired, but I didn't feel ill like last time.
On the 2nd of July, my hubbies 50th birthday, we were given the results. My pelvis was clear, no cancer was found anywhere else; however because of the uterus being shredded they were not sure yet if I needed radiotherapy. Never the less I was elated!
The hospital called the next day, they felt to be sure I should have Brachytherapy. They knew my cancer was 1b but thought it likely to be a grade 2 but because of the mess Chesterfield had made they couldn't guarantee it.
On the 4th of August I went into Weston Park. Again all staff were excellent. I have to say it wasn't the best experience I have had, it was a hard 3 days of treatment but the staff got me through.
So here I am, hopefully at the end of my rollercoaster journey. I hung on tight, gritted my teeth; through the loops, bumps, and terrifying moments, I can finally slow it down. My GP; Sheffield team; my family and friends got me through. I survived. I am still here, still smiling and that is all that matters!