Tuesday, 20 February 2018

Information Super Highway.

Remember in the good old days when the only way to find out what was happening in the world was to sit down in front of the television and watch the evening news or sit at the breakfast table and read the daily paper?

These days, you are more likely to catch your dose of news updates whilst scrolling through Facebook or on Twitter. Social media seems to be where most of us find our news these days. Main stream media (MSM) in its traditional sense is struggling. Sales of newspapers are down and many papers now have online versions although with some of them you still have to pay to access their websites.

Of course, there is now the issue of so called "fake news" but I guess in a way we've always had that because even the MSM have always only printed what they wanted you to read and not always given the full story.
The easy access to news 24 hours a day should mean that we are all more informed about what is happening around the world but sadly it would seem that's not always the case.

Many people lead such seemingly busy lives - always on the go, rushing around etc. that sometimes things pass them by. Sure news of big events still reach them, like election results or who won Bake Off or Strictly Come Dancing but the things that should be important seem to pass them by.
Many people don't see what happens in other parts of the world as relevant to their lives but in the 21st century everything is interlinked - global trade and politics affects every part of our daily lives.

There are so many people around the world trying to make a difference and it's sad that for the most part no-one knows what they are doing.

Women working in rural parts of India and Africa to educate other women and young girls on menstruation and gynaecological issues and helping to alleviate period poverty; Mothers in parts of South America fighting hard to keep their children out of armed gangs; things like this are happening across the world yet very few people know anything about them.

I spend a lot of time online due to my work with Womb Cancer Support UK, searching for information and articles related to this issue to help raise awareness and also supporting those women who have been diagnosed. I come across a lot of other interesting stuff along the way and share as much as I can because I think it's important to do so.

Although the internet has made the world a much smaller place - we can connect with someone on the other side of the world instantly via messenger or Facebook and Twitter - it has also made us more distant from the things that are happening around us.
We scroll through our newsfeeds and yet do we actually read any of the stuff there? Most people are more likely to comment on a post from a friend talking about what they had for dinner than show any interest in a news article about some atrocity in a foreign country or the rape and murder of a young girl in rural India.

It seems the compassion and empathy has gone out of society and many people are so wrapped up in their own world that they don't have the time to care about anything or anyone else, and that is really sad.

If you have taken the time to read this, I thank you and I hope you will also take the time to read more posts and articles on social media that are of real importance. The lives of everyone on this planet are interconnected even if only in minute ways - but we all matter.

Tuesday, 30 January 2018

The art of writing a letter.

It would seem in these days of technology where everything is instant - emails, instagram and texts, that the simple pleasure of writing a letter has gone out of fashion.
I used to love getting letters from my Mom every week or so an so miss them not popping through the letter box anymore since she died at the end of 2013. Occasionally I will come across one of the notecards that she used to send me tucked away in a drawer an it makes me cry when I re-read them, knowing that I'll never get another on.

Think of all the love letters that have been exchange by couples over the years; some kept for decades as a reminder of lost love or of happier times. The letters of condolences after a bereavement. The letters tucked inside a Christmas card with an update of the previous years family activities etc. an who can forget all those letters written to Santa.

We often get letters from friends and family when we are ill wishing us a speedy recovery and these sometimes arrive if we are in hospital for some length of time an help keep us in touch with the outside world.

Being diagnosed with cancer can be a difficult time and also a lonely time as our everyday lives are suspended as we go through cancer but those around us, family, friends and work colleagues, move on without us.

I recently came across a lovely website which encourages people to write a letter to a cancer patient. It's as simple as that. For the cost of a stamp, you could make a real difference to the life of a cancer patient.

Please check out From me to You and if you don't feel like writing a letter then they are always looking for donations of lovely notecards that they can use.

Make someone smile today and write a letter.

Tuesday, 23 January 2018

Change of plan!!!

OK, so I wrote a blog post on Sunday about how I was going to be taking a step back from the vast amount of awareness raising that I try and do for womb cancer. You may have read it, according to the stats around 400 people have!!!

Anyway, Sunday was a bad day for me. It was 8 years since I went into hospital for my hysterectomy - 4 days early due to being severely anaemic and needing 6 blood transfusions before the op could take place.
Also the depression was creeping back in so I wasn't really in a good place. As I said in the previous post, I had been mulling over taking a step back for some time but had never actually bitten the bullet and done it.
However the past 48 hours have changed all that.

I received so many comments via social media about my decision and some of them made me realise that I couldn't leave what I had started with the job only half done. One thing I am not is a quitter.

So, I've decided that I'm not going anywhere. The womb cancer awareness will continue. I am not about to walk away from something that I have devoted the past 7 years of my life to.
What I will be doing however, is taking a good long look at how I do what I do and structure my campaigning activities in order to achieve the best outcome.

One thing that has come out of the past couple of days is that I care too much when others don't.
WCSUK has never been about me. I don't like the attention it brings me and I don't like the fact that I have to keep talking about my cancer experience in order to try and raise awareness.
I do it though, because I think its important that we as women talk more openly about our gynaecological health issues, that includes things like periods, hysterectomies, menopause and cancer because there are so many taboos around these subjects and that is not good for anyone.

It's often said that these things are "women's issues" - I believe they are everyone's issues - men and women. Men have Mothers, Wives, Sisters and Daughters. Surely they care about them and want the best for them so we all need to be talking a lot more about these issues and I for one do not intend to stop talking about them.

Using the platform of WCSUK as well as my personal social media I will talk about the issue of womb cancer awareness, and other gynaecological issues as well as women's issues in general for as long as I have breath left in me.

We all, women and men, have to talk more openly  about these issues because they affect all of us.
I hope I can count on you to join me and help raise awareness, smash taboos and stigma and generally make the world a better place for all of us.
Heck, if we're going to aim for anything lets aim high.

Kaz.  xx

Sunday, 21 January 2018

Looking back - because sometimes it's too hard to look forward.

Eight years ago today I went into hospital to have a hysterectomy. The operation was scheduled for 25th January but at my pre-op appointment I was found to be severely anaemic so had to go in 4 days early so I could have some blood transfusions, ended having 6 in all, plus 1 during the operation itself.
I was having the operation due to womb cancer, although I had initially been diagnosed with several large fibroids & had turned down the hysterectomy that was the preferred treatment option of my gynaecologist. Then the cancer was discovered and it seemed like I had no option so into hospital I went to have all my reproductive organs taken out.
Plunged into immediate menopause at the age of 46 I thought I'd be able to manage it all until I heard a few weeks later that, despite being told by both my gynaecologist and surgeon that I would probably not need further treatment, I discovered that I did indeed need chemotherapy AND external radiotherapy.

The surgery was supposed to give me back my life, after living with extremely heavy bleeding that had controlled my life for around 35 years. What it actually did was become the start of something that changed my life forever.

The long term side effects of the treatment for what is the most common gynaecological cancer and the 4th most common cancer to affect women has left me with several chronic health conditions that rule my life far more than the heavy bleeding ever did and that's saying something.

Unable to do even the most mundane of things for the past few years, even showering or getting dressed in the morning requires a huge amount of effort, I have spent the last 7 years running a national online support and awareness organisation called Womb Cancer Support UK. When I went looking for specific womb cancer support when I was first diagnosed there wasn't any. I wanted to talk to other women who were going through the same as I was and Facebook seemed like the ideal place to do it so I set up a FB page and the rest is history. The organisation has grown to almost 3,000 likers and the website has around 1,000 hits a week.

In the absence of a national womb cancer awareness campaign we do what we can to spread the word and raise as much awareness as we can. It's shocking to think that over 9,300 women were diagnosed with this cancer in 2014 (CRUK) yet many like myself had never heard of it. It is certainly the poor relation of cervical and ovarian cancer which many women have heard of; although they may not know all the signs and symptoms they will most likely be aware of these cancers.

We are very much a grassroots organisation and rely on the women who have been diagnosed and come to us for support to help us get the word out. They have helped us distribute over 11,000 of our womb cancer awareness leaflets up and down the country but that still not enough to make sure that all women know about womb cancer.

For the past 7 years I have devoted my life to WCSUK and at times it has been tough going but I have always continued with what I do because it's a cause I believe in.
But, there comes a time when things have to change. My health is not getting any better and the effort I put into what I do doesn't seem to be achieving much, or at least not achieving what I want it too.
I feel like I am banging my head against a brick wall at times and the time has come for me to take a step back from all of this, for the state of my mental health if nothing else.

Obviously I can't just walk away from what I do but I shall be taking steps to pull back from the full on 7 days a week I put into running WCSUK and all the social media work and effort I put into trying to raise awareness. However, the support side of things will continue and the private support group we have on FB will continue for as long as there are women out there who want or need support from other women who know, an understand what they are going through. That side of things will always be there.
I had intended to do it quietly and just slip away un-noticed but I feel I owe it to the people who support WCSUK to explain what will happen over the coming months. I have no timescale as such, other than I know I don't want to be doing this for the rest of my life.
As for the future? Well, I can't turn the clock back to a time before cancer but equally I can't see a future where the effects of that cancer diagnosis doesn't play a significant part in my day to day life.
Que sera, sera.

Sunday, 24 December 2017

Well, it's nearly the end of the year again. 2017 seems to have gone quick or maybe it's just me getting older!!

Health-wise things are not getting any better, so I won't bore you with all the details.

Things have been going well on the craft front. I've been busy trying new things which you can read about if you check out my FB page Rainbows over Bute or the website where you will see details of the charities and good causes I have donated to this year.

I am looking forward to trying some more new crafts in 2018 - haven't decided what yet but we'll see how it goes.

The womb cancer awareness is still on going through Womb Cancer Support UK and we have set up a new awareness project which you can find out about here

Whatever or however you celebrate this holiday I hope you have a nice time.
See you in 2018.

Thursday, 5 October 2017

We've been busy - honestly!!

Well, it seems ages since I last wrote here - and looking at the date of the last post, it is indeed a long time since I last posted.
But, I've not been sitting around doing nothing; far from it infact.

I've just finished working my socks off during September as it was womb cancer awareness month and Womb Cancer Support UK has now finished it's 7th annual awareness campaign.

As always it's been hard work trying to raise awareness on social media; it has its good points but it can sometimes be very hard to break through and be heard above everything else that is going on.

Trying to get people to share FB posts or tweets can be very hard work, especially when you are doing something like this on your own. Putting the hours in can be tiring to say the least.

Aside from all the awareness raising, I have also been doing more craftwork. Trying to find the time to indulge my creative side has been hard over recent years as the womb cancer support & awareness work has increased but this year I have been determined to make some more time for myself.

I've been able to make and donate a lot of handmade items to various good causes and am looking forward to sending off another parcel of goodies soon.

I am also doing a couple of craft fairs here on the island in the run up to Christmas to raise funds for our local dialysis unit campaign. As always all money raised goes to the good causes concerned.

We are into October already, have no idea where this year has gone. Don't think we've had anything resembling a Summer here; just hoping we don't have a bad winter!!

Will post again (hopefully) before I do the Christmas Fairs and show you what I've been making but if you can't wait until then why not pop over to my FB page and have a look there.

Until next time.

Thursday, 25 May 2017

8 years!!!!!

8 years ago today I was admitted as an emergency to hospital over on the mainland. I had been very unwell for several months but was too scared to go see a doctor. In the end, the doctor came to me as I was close to dying and my hubby called them out.
Sitting in the corridor of the hospital A&E dept. on a Bank Holiday Monday I was cold and alone. I had never been in hospital before and knew that they would be keeping me in for some time.
After about 8 hours I was finally seen by someone and after routine tests, blood pressure etc. I was taken up to the ward.

The following morning after a sleepless night, I was told that I was severely anaemic and had I left it another 24 hours I would have died because of lack of oxygen getting to my brain.
In the end, I was kept in hospital for 2 weeks. I was on IV diuretics for several days and had 6 blood transfusions.
I had ballooned up due to water retention - it seems that being that anaemic alters your body chemistry and you retain fluid to make up for the lack of oxygen rich blood. In the 2 weeks I was in hospital I lost 45kg in weight and by a week after coming out of hospital I had lost a total of 61kg in all. My GP called it a full body trauma!!

The reason for the severe anaemia was over 35 years of extremely heavy bleeding. My periods had never been "normal" ever since they started at 10 1/2 years of age. I would bleed for weeks at a time and then stop. The weeks eventually became months.   
I put up with it all because I was scared that if I went to the doctors they would tell me there was something seriously wrong - like cancer!
Six months later, whilst being investigated for fibroids (which I was told was the cause of the heavy bleeding) I was diagnosed with womb cancer - and the rest, as they say, is history!

Knowing what I know now, and believe me I am amazed at how much I have learnt about this issue, I am amazed that no one in the hospital ever considered the fact that I might have cancer. I didn't know it at the time, but unusual or unexplained bleeding is the most common symptoms of womb cancer. No one, the Consultant, the various ward doctors etc. ever mentioned it. I was having blood taken (ironic since they were pumping it into me as fast as they could and it felt like they were taking out just as much for various tests!!!) and they were testing me for underactive thyroid, overactive thyroid, diabetes, heart issues, kidney issues, liver issues - everything gave back ok. I asked them to test my hormone levels on several occasions but they didn't deem it important enough to do!!
Had they done so, I am convinced that the cancer would have been picked up but they didn't.

So, 8 years on here I am. I no longer have cancer (I think, I've never actually been given the all clear - but that's another story!!)
I am living with the long term side effects of the treatment I had - hysterectomy, chemotherapy and external radiotherapy.
My quality of life is virtually zero and I often sit and think maybe I should have not bothered calling out the doctor all those years ago.

Kaz 😊