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The Real Me.

19/11/2017

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.Anyone who knows me, or rather knew me, before I was diagnosed with womb cancer at the end of 2009 will (hopefully) remember that I was full of life and fun and always had a smile on my face.
We had moved to Bute in 2002 and life was good. We lived on a small island and enjoyed being out and about, going for long walks around the island and on the beaches. We’d even started going camping which bought back memories of sleeping out in the garden as a kid with a sheet hung over the washing line!!!
Then cancer came into my life and everything changed. The treatment I had, surgery, chemotherapy and radiotherapy has changed my life and left me with long term side effects that have drastically reduced my quality of life.

I had thought that almost 8 years on from being diagnosed that things would have started to improve. People kept telling me that things take time and I just needed to be patient. After all, I had been seriously ill 6 months prior to being diagnosed with cancer and therefore my health was already compromised before I even started treatment.
So, as things got worse I tried to look forward to a time when things would start to improve and I would be able to get back to enjoying the things I used to do before cancer showed up. But, it never happened. My GP told me a 4 years ago that I just had to accept things and “learn to live” with it all. But I still believed that things would improve. It’s hard to accept that they won’t.

I am not the person I used to be and it’s very hard to accept that.
There are very few people in my life now who really understand the full implications of what I am going through or how I feel.

I use social media a lot in my work with WCSUK, supporting women who have been diagnosed with womb cancer and I encourage women to share their stories to help raise much needed awareness and I therefore talk about my own experiences from time to time after all, I can’t expect others to talk openly if I’m not prepared to do it myself. However, recently I was told that I was being too negative and should focus more on the positive side of things. I wasn’t aware that there was a positive side to cancer or am I missing something?

So I’ve stopped talking about my own experience as much as I used to because I don’t want to upset those who have just been diagnosed. If you’ve been told that you have an “easy cancer” (as womb cancer is often referred to) by your GP or Consultant then the last thing you want to hear is someone talking about the long term side effects of the treatment that you are about to go through, right?

When I started WCSUK back in April 2011 I never expected to still be doing it almost 7 years on. I thought I’d be back walking along the beaches and going camping, not being virtually housebound and in pain. I do what I do with WCSUK because I can’t do anything else. I would much rather be doing other things but I can’t so I do what I can but it’s getting to the point when I can’t do that for much longer.
Please don’t tell me you understand because most of you don’t, even if you’ve been diagnosed with womb cancer yourself.

I’ve been told to be grateful that I’m still alive; that I should stop looking back and look forward;  that I should stop being so negative; that I should just accept things and move on. Well, I spent yesterday evening going back and forth to the loo because I stressed my body out  going into town for a couple of hours in the morning. The damage done to my bowel as a result of the radiotherapy means that I have to be close to a toilet at all times, hence why I rarely go anywhere off island. At least here on the island I know where the loos are, even if I can’t always get to them in time.  It’s even a struggle getting to the loo at home in time sometimes.

I have nothing to be grateful for. I have said it before and I will say it again, I wish I had never had the chemo and the radiotherapy. If you think I am being melodramatic then think again.  I don’t want your sympathy, all I ask is for a little understanding and for you to acknowledge that for some of us, life after cancer sucks big time and unless you are living like I am every day of the week then you have no idea how hard it is. Not having had anything resembling a decent night’s sleep for almost 8 years just adds to the problems I have and creates even more. Feeling guilty for making my husband’s health even worse because he has become my carer since I became ill doesn’t make things any better either.

I know there are people who are struggling just like I am and some even more so, but I’m no longer going to smile and say “I’m ok” when people ask me how I am, because I’m not, far from it. Cancer really can f**k up your life, and some of us struggle to adjust to life post cancer.


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How heavy is heavy bleeding?

8/11/2017

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How do you quantify something like heavy bleeding? How do you know if your menstrual cycle is normal or not? Do you compare notes with your female friends over a latte or a glass of wine maybe?
These are questions that we need to talk about but sadly many women don’t and this is why there are so many women out there suffering in silence with gynaecological health issues – from endometriosis and PCOS to fibroids and possible gynae cancers.

A quick google search pulled the following answer to “what is heavy menstrual bleeding” - "The usual length of menstrual bleeding is four to six days. The usual amount of blood loss per period is 10 to 35 ml. Each soaked normal-sized tampon or pad holds a teaspoon (5ml) of blood. That means it is normal to soak one to seven normal-sized pads or tampons (“sanitary products”) in a whole period."

Well, seeing as my periods used to last anything up to 6 months and I would get through around 6 pads an hour, I guess my periods were anything but normal.

Obviously not every woman will be bleeding as excessively as I was, but whilst there is still so much taboo existing around periods and menstruation then women will continue to suffer.
I suffered from heavy and prolonged periods right from the very start of my periods. My Mom took me to see a doctor when I was around 15. He wasn’t the normal family GP but an elderly male doctor who told her that once I got married and had children then the heavy bleeding would stop. Well guess what, it didn’t.
When I married at 20 and moved to a new area I went to see my new GP about going on the pill. He told me I was “too heavy” (his words) and I should refrain from having sex until I had lost some weight and then he would consider putting me on the pill.

Is there any wonder that I never went back to see a GP for the next 25 years. Why would I want to face more humiliation? The issue of excessive bleeding nearly killed me in the end because I was admitted to hospital as an emergency due to severe anaemia just before my 46th Birthday. They told me if I hadn’t been admitted I would have died within 24 hours due to lack of oxygen to my brain.

It may seem easy for me to tell women not to ignore heavy bleeding as it may be a sign of womb cancer, but if you have been suffering with it for years like me, then it becomes your normal so you’ve probably spent years outing up with it, just like I did.

I believe that until we can smash the taboos around talking about periods openly then women will continue to suffer in silence and many young girls just starting their periods will think their heavy bleeding is normal and they have to put up with it for the next 40+ years.

Please, if your periods are heavy, so heavy that you need to change your tampon or pad 4 or 5 times a day and periods last longer than 6-7 days then go see your GP. You do not have to put up with this. If your periods suddenly change and become significantly heavy or more prolonged that your normal then again, go see your GP. There are several things that could be causing it; fibroids, polyps,  PCOS, adenomyosis and yes, possibly womb cancer. The sooner you see your GP the better, please don’t ignore it and hope it will go away. I tried that and it didn’t work. I don’t want any other women to go through what I did.

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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