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!