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.

Joining the dots in cancer support.

As some of you will know I am a cancer survivor. I was diagnosed with womb cancer at the end of 2009 and had a hysterectomy followed by chemotherapy and then external radiotherapy.

Anyone who has had cancer will tell you that it's tough to deal with. It is something we all fear and according to statistics, by 2020, 1 in 2 of us will be diagnosed with it.

Cancer changes your life forever and only those who have gone through it themselves will ever truly understand. Having a good support network around you can really help to get you through the dark times, and believe me there are a lot of them.
Whether that support comes from close family and friends or from being part of a support group it all helps to make us feel less alone and frightened.

Sadly, not all cancer patients have a support network. Some live alone or don't have family members close by; some live in isolated or rural communities and are unable to access support groups.

Social media can help fill this void and is being used by increasing numbers of patients to help them through their cancer journey.

Sharing your story on Facebook, Twitter or Instagram can give you back some control at a time when it often feels like you are powerless against this demon called cancer that has taken over your life.

I certainly wish that I had thought of doing it when I was diagnosed but I wasn't as social media savvy as I am now and the thought never crossed my mind. It is certainly something that I would recommend as it gives you the chance to look back over your journey and realise that the bad days were not as bad as you thought they were because you managed to survive them, didn't you?

Having been left with several long term side effects from my treatment means that my cancer journey has no real end. Due to the fact that I had no follow up appointments (long story!!) even though it is now over 6 years since I was diagnosed, I have never heard the words " There is N.E.D" or "You are cancer free, congratulations" .

Support for many cancer patients seems to end once treatment does and that can mean that many of us struggle to get our lives back on track. Trying to access extra support can be hard; that's if the support is there in the first place. NHS and council health service cutbacks mean that in some areas of the UK the support available is patchy if non existent.

Again, social media has a role to play here and there are many small and local support groups who work online to help and support cancer patients.

Through my own organisation, Womb Cancer Support UK, I have realised that many patients value the opportunity to access support in a way that means they can choose to remain somewhat anonymous - they don't have to leave home and mix with other patients if they don't want to. WCSUK has a private chat group on FB and many of the women will use it a kind of release valve to offload in a secure space - often talking about things that they don't want their family to know about because they don't want to worry them.

Physical care is only part of cancer care - but sadly it seems to be the bit that the medical profession focus on. Emotional and psychological care is very often lacking yet this can be the areas that take the longest to heal, if they ever do.

We need a much more holistic approach to cancer care;  patients who are able to access all forms of support make a much better recovery from their cancer experience. This kind of approach needs to be available to every cancer patient.
It need not cost much money - sometimes it's just a case of thinking outside the box, These services often already exist but many cancer patients are not aware of them and seemingly many GP's are reluctant to refer patients to charity organisations who may offer this support.

Everyone who is involved with cancer care and support needs to be working together for the benefit of cancer patients. Until this happens, many patients will struggle to cope and will not have the support they need to fully recover from their cancer journey.

We need to join the dots and give cancer patients the support they deserve.

The Hippy Hen on the Hippy Hen!!

I was recently contacted by a website called Care Across and asked if I would write a piece for their website about why I blog. Apparently they had seen this blog and wanted me to write a piece for them. They are  an online community for cancer patients and caregivers around the world.

Was quite taken aback when I got the email from them actually but also chuffed that someone had taken notice of what I write - guess it shows that there is actually someone out there reading what I write!!

Anyway, got an email from them this morning to say the piece is now up on their website

Feels a bit surreal writing a blog about a blog about myself but there you go. Really am pleased with the way its turned out and was very happy to have the chance to talk about why I do all this.

If it hadn't been for having womb cancer then none of this would have happened. They say that cancer changes your life - and it sure has mine, mostly not for the good but I have been lucky to meet some wonderful people over the past 6 years, most of them online and some that I have had the pleasure to then meet in real life (and some that I am hopeful I will get to meet one day).

Anyway, I hope you like the article and will share it around and maybe even pop over and check out my other blogs.

Take care. xx

Black Dog Days.

Sorry I've not been writing recently. I know I promised at the beginning of the year that I would try and post a bit more regularly but its proving to be easier said than done.

Those of you that have know me for some time will know that I was diagnosed with cancer at the very end of 2009. I had surgery (a hysterectomy) followed by chemotherapy and then radiotherapy - all of which have unfortunately left me with a host of long term side effects that mean my quality of life is not very good.
I am stuck in the flat most of the time and rarely go out. The physical issues are not helped by the cognitive issues that I also have which means that inevitably I suffer with severe depression from time to time.

I've been on a bit of a downer since before Xmas and thought I was coming out of it a week or so back but seem to be going down again.

I don't fight it anymore; I've learnt to let it roll over me and not fight it. Easier said than done I know, but recognising its coming on can make all the difference to how it affects me.

The fact that I don't have to function out of the flat, in the real world makes it easier although sometimes when the sun is shining I wish I could drag myself down the stairs and go for a walk down to the beach.

It's hard to make people understand how hard it is to live with depression. I know what I am going through is nowhere near as bad as what some people have to deal with but it still affects my life in ways that I never thought it would.

Being diagnosed with cancer was something I never expected to happen to me; but I did expect after the treatment was over that my life would get back to normal (whatever normal is!!) but things have gotten worse, not better.

People assume that because I no longer have cancer that everything is ok, but its not and they find it very difficult to accept that. Telling me I look ok doesn't mean that I am.

I don't want any sympathy - just a bit of understanding that's all.

Here's to 2016!

Before Christmas 2015 I promised myself that I was going to post here on a regular basis and would start in the New Year.
Yea well, now you know why I don't make NY's resolutions!!!!

Anyway, its only 10th January so I guess I can catch up and try and keep up a regular posting habit!

So what am I going to find to blog about? Well, allsorts really. As some of you may know if you've been following my somewhat erratic blog posts over the years, I was diagnosed with womb cancer in late Dec. 2009 and although I am now technically 5 1/2 years cancer free I have been left with serious long term side effects from the treatment. So there might be a fair bit of talk about that.

I also help to raise funds for various good causes and charities by making and selling handmade jewellery and other stuff and I donate items to charities and charitable events etc.

On top of that I also run a national not for profit womb cancer support and awareness organisation called Womb Cancer Support UK

I love music of all kinds; I'm interested in lots of different stuff and I love living on my island off the west coast of Scotland.

So hopefully there will be lots to talk about over the coming months.

I'm aiming to post every week but please don't hold me to that.

See you next week - fingers crossed! xx

Peach Postcard Update

In the last blog post I told you about the Peach Postcard Project that I have launched to help raise awareness of womb cancer.

Well, there have been some lovely postcards arriving and you can see them here on the Womb Cancer Support UK website http://wombcancersupportuk.weebly.com/peach-postcard-project.html

The project is open until he end of July so, if you have not yet submitted your postcard then please do so. We really do need to raise as much awareness of this cancer as possible.
It's the 4th most common cancer in women in UK yet there is very little awareness and no national awareness campaign.

Please share the link around and invite all your friends - I want to make this a global event as cancer doesn't respect boundaries and affects everyone.

The Peach Postcard Project

As some of you may know I was diagnosed with womb cancer right at the end of 2009 and had a hysterectomy, followed by chemotherapy and then radiotherapy.

Womb cancer is the 4th most common cancer in women in UK yet there is very little awareness of it; I had never heard of it and neither had many of the women who come to Womb Cancer Support UK (WCSUK) which is the national support organisation I started in April 2011.
There is no national awareness campaign and apparently no plans for one either so its left to patients and survivors to do what we can to raise awareness.

WCSUK has done a lot of work over the past 4 years, not only supporting women who have been diagnosed but also in trying to raise awareness.

At the beginning of May this year I launched The Peach Postcard Project  It aims to use art and social media to raise awareness.

So far there have been 18 postcards submitted and the word is getting around about the project. Yesterday I sent a link to a lovely blog post talking about the project so hopefully there will soon be some more postcards arriving in the post.

Please join the project and help raise awareness of this cancer. According to CRUK almost 9,000 women each year in UK are diagnosed with womb cancer, that works out at 26 women each day. Women who are Mothers, Sisters, Daughters, Wives, Aunts and Grandmothers.