February is Cholangiocarcinoma month.

Its that time of year again - February is cholangiocarcinoma month. Not sure what it is let alone how to say it?

Don't worry, you are not alone. Before 1st November 2013 I had no idea what it was and it took me a couple of weeks to learn how to say it.

It's actually bile duct cancer, a type of liver cancer. Quite rare with around 2,000 people diagnosed each year. sadly many are diagnosed at a late stage as its quite a difficult cancer to diagnose and can often be confused with other illnesses.

Cholangiocarcinoma is pronounced "kol-an-gee-oh-car-sin-oh-ma". and before 1st Nov.'13 I had never heard of it. That was the day that my Mom was diagnosed with it. She was stage 4 by then and although she was given 4-6 months she actually died 5 weeks later.
 
I turned to the internet as many of us do and found AMMF who are the UK's only cholangiocarcinoma charity. They were, and still are, a great source of support for me and helped me understand a lot more about this rare cancer.

Since then I have been fundraising for them by making and selling my handmade jewellery; raised over £1300.00 so far  and now I make and donate the items direct to AMMF and they pass the items on to others who are holding fundraising events for them.

Please pop over to the AMMF website and help raise awareness of this awful cancer. There is very little research or knowledge about it but AMMF are doing all they can to change that.

Thank you for taking the time to read this post.

Kaz xx

Goodbye to 2016

So another year ends. For many of us it has not been a good year, for some of us it’s been another bad year. Here’s hoping that maybe just maybe, 2017 might be a better year.

Personally, I doubt it very much. My health is not improving despite it being over 7 years since I was diagnosed and it looks unlikely that it ever will. Learning to “live with it” as my GP suggested is proving very hard!

Around the world there is so much despair and grief – wars that are destroying the lives of innocent people; climate and environmental issues that are pushing our planet beyond the point of no return.

Everywhere you look there are people fighting each other – if not with guns then with words.

There is so much intolerance and hatred in this world – much of it fuelled by politicians who only seek to further their own cause and care nothing for others around them.

The voices of good people often get drowned out but now, more than ever, those of us that care must keep shouting, louder and louder.  We must make our voices heard.

We have seen at Standing Rock that when people come together, good things happen. There is more in this world that unites us than what divides us.

So I wish you all a happy, healthy and peaceful  2017 and hope that you will join with me in making our world a better place for everyone who lives on it.

Angry! You bet I am.

I am angry.  Angry about a lot of things.  Angry about things that I feel powerless to change.   Angry that other people don’t feel as passionate about things that they should be angry about and are instead more concerned about which so called celebrity is dancing or eating  grubs on tv.

I could put my anger down to being menopausal but I know it’s not that. I’ve been angry for a long time quite simply because I care.

I cared about whales back in the 70’s when I joined Greenpeace and I cared about the Amazon Rainforest when I joined Friends of the Earth.

I care about so many things – there is so much injustice and cruelty in this world that I can’t help but care. Sadly it would seem that not enough people care otherwise these things wouldn’t be happening, right?

Sometimes the anger boils over into frustration. What can I do to change things? How can I make it stop? Why don’t other people care as much as I do?

Children and women seem to bear the brunt of all the bad stuff happening in the world whether it be in Syria, Aleppo,  Yemen, the refugee camps in Calais or austerity Britain.. The most vunerable people are the ones who suffer the most because they are the ones least able to escape or change things. That makes me angry.

We live in a society that demonises people who are different – whether that be a different religion, different sexuality, different colour skin. That makes me angry.

We turn the other cheek and ignore all the bad things that are happening in the world because it doesn’t affect us as individuals. That makes me angry.

It is coming up to Christmas – a season supposedly of goodwill to all. Yet we’ve just had Black Friday where people have been literally killing each other in order to buy stuff that they don’t need just because it was on sale. In the next 4 weeks people will be spending money that they don’t have on stuff they don’t need – and come 25^th December they will be over-indulging on the food and drink and that makes me especially angry when there are people living in places without access to clean water and children in many parts of the world are going hungry.

The over consumption of goods and food is very often the driving force behind a lot of what is wrong in the world these days. We live in a materialistic society where the bigger the tv, or car or the newest mobile phone or ipad you have the better person you are; at least that’s what the advertisers make you believe. In reality, if you fall for it all, it just shows how shallow you are and how little you care about anyone else or the world around you.

If you don’t care about what is happening in the world then you are part of the problem.  That makes me very angry.

I will continue to be angry because by being angry I can hopefully be part of the solution. I will continue to care and I will continue to highlight all that is bad and wrong in this world.

 

Saying goodbye to September - until next year!!

Well, September has ended and so has another womb cancer awareness campaign.

It's been another successful awareness campaign - lots of stuff done via social media as always and we've also had the awareness events in Birmingham, Manchester, London and Glasgow. Sadly the weather didn't play fair and there was more than a few showers worth of rain at all the events but sadly we can't control the weather!!

Have posted lots of inspiring guest blog posts from some of our Peach Sisters as well as a couple from people who are helping to change things in the world of womb cancer so that has been great too.

September may be over but that doesn't mean that the awareness stops. I have been asked if I'd like to write a guest blog post for The Vaginalogue which is a new website dedicated to helping women be more open about their gynae health.  Looking forward to that.

Sadly, my health is not getting any better and the depression is starting to kick in again so might be time to take a break for awhile and recharge my batteries. So if you don't hear from me for a while you'll know why.

Take care. xx

Busy, busy, busy!

Well, day 25 of womb cancer awareness month and it's been a very busy September so far.
As those of you who have followed this blog for some time will know, I was diagnosed with womb cancer at the end of 2009.

Now, although womb cancer is the most common gynaecological cancer there is very little awareness of it so when I was diagnosed its not really surprising that I knew nothing about it. I had heard of cervical and ovarian cancer, but never womb cancer.

So when I started WCSUK (the national not for profit support and awareness organisation I run) back in April 2011 it soon became apparent that it wasn't just me that was unaware of this type of cancer so as well as offering support to those women like me who had been diagnosed, the organisation began raising much needed awareness as well.
In the absence of any national awareness campaigns and the lack of any other  womb cancer organisations, WCSUK was filling a void and providing support and information to women across the UK.

Over 5 years on, we are still doing that because there is still no national awareness campaign and there are still women being diagnosed with womb cancer who have never heard of it before.
September is womb cancer awareness month and since 2011 we have used the month to raise much needed awareness. Most of it happens online - using FB and Twitter to network and reach out to women.

Social media is a great tool for that and is used by many organisations, big and small to get their message out.
So this month has seen me virtually tied to my laptop - writing blogs, updating the website, connecting on FB and Twitter, running a Thunderclap campaign and lots of other stuff.
It's hard work, and stressful at times (especially considering the state of my own health, which isn't good these days!) but it's good to know that what I, and some of the other peach sisters are doing, is making a difference, even if it is only a small one.
What is it they say about small acorns and mighty oak trees?

Here comes September!!

So sorry that I've not updated the blog for a few weeks but I've been so busy planning and getting ready for September - which as you probably know if you've been following me for a while is Womb Cancer Awareness Month.

If you didn't know, then that is all the more reason why we need Womb Cancer Awareness month!

Womb cancer (or endometrial cancer as it is sometimes called) is the most common gynaecological cancer yet there is no national awareness campaign for it and sadly many women have never heard of it.

I had never heard of it until I was diagnosed almost 7 years ago - and once I'd finished my treatment I was determined to do something about it so I started Womb Cancer Support UK which is a support and awareness organisation, and was the first dedicated womb cancer organisation in the UK.

This September will be our 6th awareness campaign - a whole month of raising much needed awareness via social media plus various events happening in the "real" world!

You can find all the details on our website or by following us on Twitter or our Facebook page.

We have also launched a Thunderclap campaign to make some noise about womb cancer so please spare a minute to sign up for that. Much appreciated.

6 years on.

12^th July is a significant day for me – 6 years ago today I had my last radiotherapy treatment at The Beatson in Glasgow. I remember walking out of the oncology unit into the bright sunshine and suddenly bursting into tears.  I spent the journey all the way back home to Isle of Bute crying in the back of the patient transport ambulance.

I should have felt at least happy, although maybe not elated, that it was all over. Having been diagnosed with womb cancer on 23^rd Dec 2009 and then starting 2010 with a hysterectomy followed by chemotherapy and then radiotherapy, I should have felt some sense of relief that it was all over.

Instead I felt scared and afraid for the future. My safety net had been pulled from under me and I had no idea what would happen next.
My treatment had ended just 5 days before my 47^th Birthday, yet even then I didn’t feel like celebrating. 

Cancer does this to you – it changes your life forever, especially if you are unlucky enough to be left with long term side effects and health issues. There is no returning to normal – or anything resembling normality!

I hadn’t realised until the other day that 12^th July also marks another anniversary – 14 years this year since we moved to Isle of Bute. A small island on the west coast of Scotland.

I’d always wanted to live by the water. I’m a Cancerian after all so it was bound to happen sooner or later. It’s the first place I’d truly felt I could call home after leaving home at 19 to get married.

Our flat is tiny, on the first floor, and we have no garden but the view every morning when I open the curtains is worth it.

The first 7 years were great – long walks around the island or along the beaches. It didn’t matter that the flat was tiny because we were hardly ever in it. Then my health started to deteriorate  and one thing lead to another and eventually I got my cancer diagnosis.
Since then, life has been an uphill struggle, for myself and my husband. His health has also suffered as he became my carer. Far from spending most of the time out of the flat I am now virtually housebound, rarely venturing out. My health has suffered dramatically as a result of the cancer treatment and my quality of health is very low.  My GP has told me to just accept it because things are “as good as they are going to get”.

Knowing what I know now, I would not have had the chemotherapy or the radiotherapy. I felt pressured into agreeing to it and the full side effects and long term consequences were never explained to me.

Part of what I try to in my work running Womb Cancer Support UK is to empower women to ask questions – and keep asking if they don’t get the answers they want or understand the answers they are given.  We have a right to know the full extent of any possible side effects – we can only give our informed consent if we are given all the facts.

I feel cheated out of the past 6 years of my life.  6 years that I could have spent walking along the beaches, or going camping or walking in the hills – enjoying my life. Instead I have been left with a load of health issues that are all interrelated and with me for the rest of my life.

I’m upset, bitter and angry. I also want to do what I can to make sure that other women don’t have to go through what I’ve gone through.  Empowerment is the key and by sharing my story I hope that other women will feel able to stand up for themselves and get all the information they need to make the right decisions for them.