Monday 31 December 2012

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

Monday 24 December 2012

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

Tuesday 18 December 2012

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

Tuesday 11 December 2012

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 8th 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.