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Vagina is not a dirty word!

25/10/2017

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I have 2 eyes, a nose, a heart, 2 arms, 2 legs and a vagina! Sadly I no longer have a womb, fallopian tubes or ovaries as they were removed after I was diagnosed with womb cancer at the end of 2009!!

There has been a lot of media attention over recent months about gynaecological health, especially around the issue of women having to make repeated visits to their GP before their concerns are taken seriously. This could be down to several issues, such as the massive strain that the NHS is currently under due to under funding and cuts and the fact that many GP surgeries are over stretched and GP’s don’t have the time to devote to each patient, after all a 10 minute appointment (if you are lucky) is hardly long enough to go over a woman’s full gynaecological history.

Sadly however, many GP’s don’t seem to take women’s health issues seriously. I have heard from women who have been told that excessive bleeding is normal and that every woman has it from time to time. Others have been told that heavy bleeding   when going through the menopause is normal and others have been told to stop complaining about severe PMS because every woman goes through it and they don’t all complain!!

We as women would like to think that we know our bodies best and most of us do but sadly many women are still ignorant of their gynaecological health. There are so many things that can go wrong “down there” and all women need to know their own “normal” when it comes to their gynaecological health.

According to research by The Eve Appeal around 40% of young women didn’t know where the vagina was on an anatomical diagram!! How are we ever going to raise awareness of gynaecological cancers if women don’t even know their own anatomy?

We women  need to be empowering each other and talking openly about gynaecological issues that can affect us all. From gynae cancers to STD’s and other sexual health issues,  through pregnancy and menopause issues. We owe it to ourselves and our daughters and grand-daughters to  put an end to all the taboos.
We need to stop being embarrassed about using the correct terminology - there is nothing shameful about saying the word VAGINA or VULVA.  If we can’t even say the word how are we going to make sure we get the proper health care we need?
  
Using silly euphemisms  doesn’t help the matter either. It does nothing to remove the stigma or taboo around talking about gynaecological issues; indeed I believe it can infact make matters worse. Many older women find it difficult to use this type of language – it is deemed to be offensive and derogatory.

We also have to consider the needs of the BAME and LGBT community when it comes to gynaecological health issues and the language we use.  Many in these communities feel isolated and excluded, especially those in the BAME communities who have to fight stigma and cultural prejudice and often find it very hard to speak out about issues like this.

So if you don’t already do so, then please start talking about these issues with the women you care about.  You probably already talk about having your breast mammograms and maybe even your smear test but we really need to be more open about all aspects of our gynaecological health. 

Do you know that there is no such thing as a “normal” period? We are all different so our periods are all different. Your “normal” is different to your daughter’s, or your best friends so learn to know and understand "your" normal and then you are more likely to understand when something is wrong and needs investigating.

Our vagina’s are wonderful but sometimes things can go wrong. Thankfully many of those things are easily treated if you listen to your body and seek help at the first sign that something is not as it should be.

So be empowered to use the correct terminology when talking about your gynaecological health. Know your vagina from your vulva and say it loud and proud “VIVA LA VAGINA”.




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How we talk about cancer.

19/10/2017

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The language we use around cancer can have a big effect on the way we, as patients and those who care for us and know us, see the illness. The “battle” talk that is often used can be helpful for some people, but many don’t like using that kind of language.
We don’t talk about “fighting” MS or diabetes so why cancer? What is it about cancer that makes us talk in terms of being a “warrior” or a “fighter”?
I certainly didn’t see myself as either of those things when I was diagnosed back at the end of 2009. I was told I was a hero and inspirational – but I certainly didn’t feel like that. I just did what I felt I had to do.

Very often we are told by well-meaning family and friends that we should “think positive” – it’s a lot easier said than done believe me, especially when all your bodily hair (and I mean all of it, every last hair, everywhere!!!!)  has fallen out and you are bloated because of the steroids and can’t keep any food down because of the chemo!! Yea right, all you need to do is “be positive” and you’ll feel a lot better!!

There are a lot of cancer patients who are living with long term side effects of their treatment and it can also be hard for them to have a positive outlook on life, especially when family and friends think you should forget all about it and move on with your life. Hard to do that when your quality of life is so low that it’s a struggle to even get out of bed in the morning.

I was told a few weeks ago that I should be grateful that I was still alive and someone else told me I should stop dwelling on my cancer diagnosis!!! I would have slapped both of them but I hadn’t got the energy – serious fatigue does that to you!!

Constantly seeing articles about how cancer patients should be exercising more to prevent recurrence or how it helps improve your mental well-being is all well and good but if you’ve been left with serious long term side effects that mean you can sometimes barely walk because of pain or struggle with serious fatigue which means even getting out of bed or having a shower is a major struggle then anything like exercise is out of the question.

Added to all the physical pain and discomfort is the fact that emotionally and psychologically you are a total mess and quality of life for many cancer patients can be very low. Long term support is virtually non-existent, that’s if you’ve been lucky to have much from the start.  Very often the only care and support a cancer patient gets is from their partner or close family members which means strain is put on relationships. It’s hard when your husband or wife becomes your carer; it can alter the dynamics of a relationship, sometimes permanently.
 
A whole new field has opened up in social media circles, that of cancer coaching.  People offering advice on how to get your life back on track post cancer. How to “find your new normal” or discover your "new path” – all well and good but the practical support that many cancer patients need – like how to afford to pay the mortgage or get to and from appointments when you have to rely on public transport or how to adjust to a change in body image post cancer – is often just not there. If you live on your own or have no close family to help out or live in an isolated or rural community then it can be even harder to cope.

Very often, HCP’s are only interested in treating the cancer and the after effects or long term side effects of that treatment are of little concern to them.  They need to start realising that the treatment they prescribe can sometimes have devastating consequences on a patient’s quality of life and they need to take that into account. Long term care and support needs to be factored into any treatment plan. Patients are very often left without any safety net of support when treatment ends and that is not fair.

Getting a cancer diagnosis changes your life forever. Some people are able to move on and put their diagnosis behind them but for many, it continues to be something they have to live with day after day for the rest of their lives.

Kaz xx
 

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My story of a womb cancer diagnosis by C.C

11/10/2017

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I was diagnosed with Endometrial Cancer in Sept 2015. I had to undergo a saline, painful and unbearably horrendous hysteroscopy to establish/confirm my diagnosis. Once it was confirmed I had a  hysterectomy which was done by a fantastic surgeon and it was keyhole which was better than an open wound.
So far so good. I immediately went into a full blown menopause (I was previously peri-menopausal) It started with full blown hot flushes, then came conflicting moods ranging from being really tearful to narky to confused and foggy brained and very forgetful.
I also didn't know if, but I was falling into a depression. Others around me noticed and bless them, did what ever they could to help, e.g. buying me mindfulness books etc. I began to lose confidence and this is what affects me the most at the moment. I can't seem to hold a thought in my head, 
I doubt myself and my judgement continually about things sometimes because I know how forgetful I have become. It is a constant struggle to keep my emotions in check. Most of all, I won't talk about it in work because I am fighting for a higher pay grade (I am doing a job much higher than the grade I am on and not being paid for it) I worry in case I disclose my symptoms I will be seen as someone whose capability will be put in question.
I am an intelligent person who is more than capable, but am not the same, person I was 2 years ago.
Thankfully I still have my sense of humour but I have disappeared somewhere, I barely recognise myself. I can't take HRT as I had breast cancer in 2012 so possibly I am still dealing with the fallout from that and it has added to the problem.
I keep active and I am one of the very lucky ones who have a family and grandchildren and have a lot to be thankful for. I really don't think that menopause/womb cancer and the impact of it is taken seriously enough. It is like being hit by an airbus every single day.
The chaos, distress, upset, change etc that it brings is terrifying and hideous in many cases. I tried counselling and that was disastrous as although she was lovely, she was a trainee who kept flicking through a text book. Will never try that again.
My strength comes from my Peachy Sisters, and from Kaz. Don't ever underestimate how much they have helped all us ladies. As for me, I will continue to keep it hidden in work, and I don't talk about it much at home either, they have been brilliant but they have been through enough so I have it locked inside.
I think more understanding is needed about the fallout from such an awful illness. It breaks minds, it breaks relationships and it breaks hearts too. I feel like a shadow person, like I have been robbed of some of my personality somehow. I have been single for 20 years by choice (long story for another time) and I feel I am in no place to inflict myself on another person the way I feel.
I am sure it will level, but women need more education about what to possibly expect and we need coping
strategies.
I keep fighting, I don't allow myself to give in, but it's really hard. I travel, I go out and I love helping those that need a hug. At least it didn't rob me of that. .
I feel like some days I am losing my mind, but the journey continues to try and find it... if you come across it let me know


If you would like to write a post for us then please get in touch by using the contact form.

Kaz xx

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My story of a womb cancer diagnosis by S.T

4/10/2017

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In a little over a year, my life has changed.  Out of the blue I was diagnosed with womb cancer in July 2016, shortly after my 39th birthday.  Sure, I’d had symptoms but I wasn’t aware of womb cancer and was told I was probably too young for it to be anything sinister so I never saw it coming.
It’s been a hard road, and I still struggle with some aspects, but life is okay.  I am a much calmer person now and feel more confident in general.  I went through a lot of fear and was convinced I was going to die. 
It was surreal and terrifying and my long-term relationship barely survived. In fact, we are still in counselling and our relationship is not what it was, and I’m apprehensive with intimacy, but we are working on things. One of my concerns was going through the menopause, but I’ve been surprised and have barely noticed it. 
Before I was always hot and now I am always cold, which is the opposite of what I expected, but so much better.  I have however put on yet more weight and I feel a bit freaked out if I think too much about not having a womb anymore and I barely have any sexual desire.  This is probably partly due to being on anti-depressants which I hope to stop taking eventually, but for now they are doing their job.  I’ve realised that working through one issue at a time works best for me.

So why, despite all this, do I feel like life is better now?  Well it’s the change in my attitude.  I was very anxious before, unhappy, short tempered.  My periods were ruling my life, I was dizzy, my hair was falling out and my hormones were all over the place.  Work was stressful and I didn’t feel like I was living my life.  I worried about running out of time to decide whether having children was for me or not.  Then bang, everything stopped and I was forced to focus on my health.

Whilst I was off work recovering from my hysterectomy (luckily, I was stage 1a, grade 1 and no further treatment was needed) my job changed and is so much better now than it was before.  My parents were in the process of moving away, but they instantly changed their plans and stayed.  Obviously, I can no longer have children so I’ve accepted that it wasn’t meant to be. This is a strange one though, because it has affected me more than I thought it would, but I try not to dwell and am about to become an auntie so I’m going to make sure I’m a great auntie.

I no longer worry about the small things and am generally more relaxed about everything, even my intense fear of spiders is not nearly as bad as it was before!  People close to me have noticed that things don’t phase me in the same way as they used to. It’s hard to explain what having cancer is like and how it affects you mentally unless you’ve been through it, but every story is different of course.
I have also met loads of amazing people and made new friends. The medical professionals I have met have been amazing and I am forever grateful to the NHS, Macmillan and the amazing WCSUK support group.  Whenever I feel worried about something I remind myself that I survived cancer so I can face anything.  I’ve had counselling, where I talked a lot about dying because no one wanted to talk about this with me, but it was important to me and my sanity at the time. 

Ultimately, I’m proud of myself and I’ve never felt that way before.  I’m amazed by how well I continue to deal with everything that’s happened.  Don’t get me wrong, I do have bad days, but they aren’t very often. Whatever life throws at me now, I know can get through it and this has brought a sense of calmness to my life.  I have also gone back to doing yoga which really helps relax me. 
I’ve decided I’m going to travel more and say ‘no’ to things I don’t want to do. Cancer almost ruined my life, but it feels like I’ve been given a second chance and I’m positive about the future.


If you would be willing to write a guest post for us then please get in touch - you can use the contact form.

Kaz xx

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    Blog posts about life with womb cancer; by me and other womb cancer fighters and survivors. Plus occasional guest blog posts on relevant subjects.

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