Advocacy Award

You may remember last year that WCSUK became a partner in the One Team One Goal worldwide coalition building campaign to unite gyneacological oncology practice and advocacy groups.

We are very pleased to announce today that we have recently has been honored with One Team One Goal Advocacy Champion (Europe) Award.

 Debra and I are extremely honoured to receive this award.

Support - when its needed, on your terms!

When I started Womb Cancer Support UK back in April 2011, I did so because I didn't want other women going through womb cancer to feel as alone and scared as I had been 16 months previously when I was diagnosed.
I was diagnosed on 23rd Dec 2009 and had my hysterectomy on 25th Jan 2010. I got my pathology results 3 weeks later and was then told that there were cancer cells still present and I would need chemotherapy and radiotherapy.

Thats when it hit me. Originally my Consultant had said he was 99.9% sure they could remove all the cancer through the hysterectomy - it was only when the pathology results came back and showed that there were cancer cells present in the stomach wash they did, did I realise that 99.9% wasn't good enough!

Cancer aside, the hysterectomy was the best thing I ever did. It put an end to over 30 years of extremely heavy, irregular and painful periods - sometimes lasting several weeks at a time.
So the thought of never having to worry about that again was great.
But being told that I was going to be pumped full of toxic chemicals, and have my hair fall out; and then have to go through 5 weeks of being irradiated every day scared the life out of me!!!

I didn't know anyone who had cancer; there was no history of it in my family. I had no one to talk to about it.
I live on an island off the west coast of Scotland and when I got my diagnosis, I was the only one on the island with womb cancer. I joined the local cancer support group but it was full of women with breast cancer and at 46, I was the youngest there by a good 15 years.

I felt scared, isolated and alone.

I was lucky enough to get (and still have) regular visits from a wonderful Macmillan nurse who has helped my immensely throughout the past 3 years.

When my treatment eventually ended in July 2010, a week before my 47th birthday, I felt cast adrift. My security blanket of regular visits to hospital and all the tests had gone.

Again, I felt alone. I expected my health to improve slightly after the end of the treatment. I had suffered with severe diarrhoea for the whole 5 weeks of radiotherapy aswell as cystitis but this lasted for several weeks after and indeed I now have long term bowel problems as a result of the treatment.

Ever since I got my diagnosis I spent ages scouring the internet looking for information about womb cancer. Anything - treatment options, side effects, causes; symptoms.
I looked for support groups - there weren't any specifically for womb cancer patients. I used the forums on the Macmillan website and joined a US based support group on Facebook but it still felt like there was something lacking.

And thats where WCSUK came in. After a chat with a fellow womb cancer patient that I had met through FB I decided to start my own womb cancer support group!

The rest, as they say, is history!!

https://www.facebook.com/WombCancerSupportUK

Cancer and depression

We all feel a little down from time to time, especially when we are going through something like cancer. But when does it cross the line from being a bit down to being depressed; and what can you do about it?
Depression  can affect your ability to cope with simple, everyday things such as sleeping, hygiene, eating, social activities and work.
If you are depressed, it’s impossible to simply "get over it". Well meaning family members or friends will often use this phrase and it's often difficult for people around you to understand how you feel.. Unless someone has been depressed themselves, it is almost impossible for them to understand what it feels like.

Depression is said to be the least noticed symptom in people with cancer. Yet it can be one of the hardest  to cope with. GP's and cancer specalists are getting better at recognising and treating depression in people with cancer. But there is still a lot more significant research to be done.
According to CRUK, almost 60% of people with cancer will get depressed. It may happen soon after you are diagnosed, but it is also quite normal to become depressed after finishing  treatment.

Depression can be triggered by a  number of things. The impact of being diagnosed with cancer is enough to trigger a depressive illness in some people. Changes in hormone levels may contribute to depression in some people so the fact that most of us will have gone into surgical menopause after a total hysterectomy is also a factor.

Also once treatment has ended and you are no longer being seen frequently by your medical team you can sometimes feel lonely and isolated. You no longer have the security of having people looking after you and this can sometimes trigger depression.

It is important to remember that depression is not a sign of  failure or an inability to cope. Never feel guilty about feeling depressed or not feeling positive all the time. It can usually be treated successfully and the  first step to feeling better is finding appropriate help.
Speak to your GP, who may prescribe an antidepressant to help you. They can take some time before you feel any benefit but you should start to feel some improvement after a couple of weeks. There are different types of antidepressants, and your doctors may need to try more than one to find the type that suits you best.

If you’re very depressed, your GP may refer you to a psychiatrist or clinical psychologist.

Macmillan have a very good section on their website about depression and remember that you can always contact them for help and advice. http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Emotionaleffects/Depression.aspx

 Remember, you are not alone and you don't have to go through depression on your own. Never be afraid to ask for help.

Win at all costs?

So Lance Armstrong has finally admitted to being a cheat. http://www.bbc.co.uk/sport/0/cycling/21066354

The thing is, the people that he's really cheated, as far as I am concerned, are the millions of cancer patients who read his books and believed in him.

He says that his battle with cancer gave him a "win at all costs" attitude. Well, most of us have that when we've been given a diagnosis of cancer. But we don't turn into lying, cheating cowards!

Because thats what I think he is, a coward.

He was scared of dying and couldn't admit it to himself. I read his books and what struck me was his attitude to having cancer. Most of us have this "I'm going to fight this and I'm going to win" attitude but it seemed to go far beyond that with Armstrong.

Looking at all the news reports today about his interview with Oprah Winfrey, its all about how he's ruined the sport; ruined the reputation of "sportsmanship"; bought cycling into disripute! Its all about money, success, ego.

I can't find much about how the millions of cancer patients feel about being let down by someone they believed in. Someone who gave them hope.

http://www.freep.com/usatoday/article/1842777&usatref=sportsmod?odyssey=mod%7Cnewswell%7Ctext%7CSports%7Cp

The Doctor who treated him says that "his legacy is going to be his legacy as a cancer survivor and what he's meant to the cancer community.''

Really? I'm not so sure! With all the calls for him to be tried in a court of law and sent to prison - its obvious that most people (maybe those who havn't had a cancer diagnosis!!) feel differently.

But I guess what it really boils down to is this. We live in a society that worships success. We want winners! Doing your very best and not coming first isn't good enough!

The people calling him a cheat are probably the very same ones who think its ok fot their teams top striker to take a dive in the penalty area to score the winning goal.

I guess as always we need to look at the bigger picture. Without his Tour de France wins there would bever have been the Livestrong Foundation. This has helped many hundreds, thousands of people with cancer. Despite the admission from Armstrong of having taken performance enhancing drugs during his racing career, the Foundation will continue to help cancer patients around the world - and in the end, thats all that really matters as far as I am concerned.

Raising Awareness

Womb Cancer Support UK was set up back in April 2011 on Facebook as an online support group for women going through womb cancer.
It soon became clear that many of the women who joined the group had never heard of womb cancer before their diagnosis, myself included.

So bit by bit, we began to add awareness raising to our efforts and this took many forms.
During September 2011, we held out 1st Womb Cancer Awareness month, following the lead of our US peach sisters, who regard September as Uterine Awareness month.

We had a "Turn Facebook Peach" event where we asked people to change their profile pic to something peach for the month. Some of us held tea/coffee mornings in our own local area. I had a short article published in my local paper.

After the success of that first awareness campaign, we began to look at ways of doing more to raise awareness of womb cancer throughout the year and not just during September.

We had some leaflets printed that list some of the signs and symptoms to look out for and some of the women kindly agreed to distribute them at their local Health Centres, GP surgeries and Hospitals.

 

One of the best ways of raising awareness is to "come out" as a womb cancer survivor and a lot of the women in the group have done that by either wearing one of the peach wristbands or even getting a peach ribbon tattoo!

Its surprising the number of people who will ask about a wristband, especially if it's in a colour they don't recognise. I myself have been asked on numerous occasions why I wear mine!
Its often as ice breaker to a conversation and then you are able to do a bit of awareness raising which helps every woman out there!!

If you'd like a wristband (£1.50 each including p+p) then contact us via the FB page https://www.facebook.com/WombCancerSupportUK  or email us at wombcancersupportuk@hotmail.co.uk

Also, if you are able to take some of our leaflets to leave at your local Health Centre etc then again please contact us and we'll get some in the post to you.

Awareness raising, in whatever form it takes, is vital if we are to inform women of the signs and symptoms of womb cancer and help to stop the increase in the numbers of women being diagnosed.

Thank you. xx

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