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Womb Cancer Wednesday!

25/6/2014

Raising awareness, both of womb cancer and the work that WCSUK does, is only part of what all this is about. It's a big part, sure. But in order for it to be a success, it needs voices - voices of women who have gone through a womb cancer diagnosis and know what it feels like. How it turns your world upside down and inside out.

That's why I am going to start something that I hope you will all get involved with. Something that will hopefully help raise more awareness and spread the word about what WCSUK does and why we are here.

Welcome to "Womb Cancer Wednesday" - I would like to invite to join me in using this day each week to talk about womb cancer. Everyone knows about breast cancer - pink ribbons are everywhere and everyone knows what they stand for!

I want people to know what, and more importantly who, peach ribbons represent.

The 23 women each day who are diagnosed with womb cancer. The nearly 1,900 each year who die as a result of a womb cancer diagnosis.

The women in their 20's, 30's or 40's who are diagnosed - many of whom have struggled to get a diagnosis because they keep being told that they are "too young" to have womb cancer. Those same women who face being childless because of getting womb cancer - a double whammy!!

So today, and every Wednesday I am asking you to spread the word. Take every opportunity to talk about womb cancer. With family; work colleagues; other patients in the surgery waiting room; etc.

The more we talk about womb cancer, the less it will be "the forgotten" cancer.

It's time to bring peach out into the open - turn something as negative as womb cancer into something positive. Spread the word and help stop the rise in numbers of women dying from a cancer that many had never even heard of before their diagnosis.

So go forth, peach sisters and spread the word!

xx Kaz xx

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My story of womb cancer - by DF

22/6/2014

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Another in our series of personal stories by ladies who have gone or are going through womb cancer.

"I was 41 when I was told. Never heard of it till then. One morning I was having what felt like contractions at 6.50am. My daughter went up to my friends house and she came down. She phoned for an ambulance straight away. It was horrible; I didn't know what was going on.
I was rushed up to the hospital then about an hour later I started bleeding through everything. I was pretty much scared. I was transfered to another hospital and was given painkillers. I was kept in for ten days; went for allsorts of different scans. I can remember going for one, all of a sudden I started bleeding. It come through everything. I was so embarrassed. I was scared, didn't know what was happening.

I'll never forget that after I had all these scans, things started to calm down. I can remember the doctor saying that I was a bit over-weight but things were ok. I felt as if I was wasting their time. They gave me painkillers to go home with and told me that l would get a letter in a couple of weeks, but things looked fine to him. I felt scared; I knew something wasnt right. I just had a gut feeling something wasnt right.

My appointment soon came through. Never forget it; it was for 31 January - my daughters birthday. I went on my own. I was called in and they asked me if I had someone with me. I said and then they told me I had womb cancer.

I just sat there. I said I had never heard of it and then it hit me. I had tears in my eyes. I cant remember much after that. I can remember them giving me a card for the Friday appointment; I can remember sitting on the bus with tears down my face.

The bus journey home was horrible knowing I had to tell my mum. My dad had died 4 years previously of cancer. I was dreading telling her but had to hold it together for her so I told her. She never said much and to be honest I couldnt understand it myself much.

I felt frightened and scared with no one to talk to; I felt so alone but yet it was my daughters birthday so I had to act normal.  We sang "Happy Birthday" and cut the cake but I couldn't cope anymore. I started crying and left the room.

I knew it was the wrong time but I told my kids then. My boy asked me if was I going to die; my daughter was crying. I couldn't answer their questions. I had no one to talk too; no one to listen too. I felt so alone.

I had my doctors gynaecology appointment on the Friday. I went alone because I felt no one would understand so I keep it all in.  He told me I needed a radical hysterectomy as soon as possible. To be honest he was talking but I couldn't understand it all. The operation was planned for April and this was the beginning of February.

I was rushed in half way through February with heavy bleeding. I was kept in for 8 days.  Everything settled down after a few days again. I saw my consultant, he was good and the nurse. I had more blood tests, you name it I had it.

I couldn't keep antibiotics in so drip it was but my veins started closing; even had them in my foot. I must admit it was very painful but they would close after a while but soon it settled down again.

When the time came for my op I can remember that I never slept the day before. I was scared and had no one to talk to. I can remember going down to theatre thinking I was going to die. As horrible as it sounds I couldnt carry on with the pain. The next thing I knew I was back in the ward, still groggy cant remember much!

After 2 days of just lying there I needed fresh air so me trying to be clever said to my mate who had come to visit me to get a wheel chair cause I couldnt walk far. So she got one and I went out for some fresh air. I couldn't handle it in the ward; they were full of elderly people.

After 9 days I came home. I still couldnt talk about anything. I had to get back on my feet; my kids needed me. However, I over did it and after a week the doctor wasnt happy at all.
I had no one; didnt know nothing about anything. I had everything out then flushes came and yet I couldnt take anything for them. I felt so isolated; who would listen; who would know how I felt? Why me?
Everything was going through my mind and still I put a block up - thought it was easier that way. After about 7 weeks, I didn't feel right so my mate took me down the doctors.  That's when I collapsed. I was sick and dizzy. I managed to get up with help and went to see the doc. I collapsed again and this time they called the ambulance and I was rushed in to hospital. Turns out I had an infection. I was put back on a drip for ten days.

My gynaecologist came and said I had a very bad infection so was put on anti biotics and anti sickness tablets. I felt horrible but they eventually gave me the all clear.

I was happy yet it was a strange feeling; I've always put on a front because it was easier. But now I live with the fear it will come back. I'm scared everyday yet can't talk to anyone cause if I do I know I will break down.
I'm luckier than most but deep down im angry and frightened."

If you are willing to share your story then please email me at [email protected]

xx Kaz xx

UPDATE TO THIS STORY:
I've been having a few problems for a while - need to have more biopsy done but I am scared. What if it's back but not scared either! I've had to keep this all in. I go to appointments on my own trying to be brave I'm not feeling so frightened but can't show it.
There are two people I miss with all my heart; my dad and one special person who I miss so much. Why did it have to happen? I feel as if it's my fault; I'd never heard of it till I was told. It's been a scary few years yet to this day I scared of "What ifs" I've said no more appointments cause I'm afraid of knowing yet can't tell anyone how I feel. I'm in bits writing this; there should be more ladies made aware of this as I've never heard of this since I was told. It's like as if I'm living on a time bomb waiting; it's horrible. I'm scared yet can't tell anyone how I really feel.

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My Womb Cancer Story - by L.F

14/6/2014

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Another in our occasional series of stories by ladies who have had womb cancer

What a momentous year 2013 turned out to be!

At age 60, I began to bleed; knowing that the menopause was a thing of the past so this should not be happening, I shoved it to the back of my mind, in true ostrich fashion. Of course, it al got worse, more painful and much heavier and my doctor wisely referred me to Winchester hospital under the two-week rule and probably saved my life!

After two biopsies under general anaesthetic and two MRI scans, my formal diagnosis was delivered by my specialist on 16 Dec 2013 as being a Stage 1 womb cancer, showing no spread outside. I remember the date rather well, as it was also the 40th anniversary of my Mum's death from ovarian cancer. When I told the specialist, she sat back and burst out, 'Oh no, what crap timing' and we both burst out laughing! I actually recall feeling incredibly pleased that my far worse fears hadn't been realised and that with a short course of radiotherapy after a radical hysterectomy, the outlook was only marginally worse than if I hadn't been diagnosed with cancer at all.

A week later, on 20 Dec, I met my surgeon who said he intended to do it by keyhole surgery, which surprised me as I'm frankly obese. He said, 'Well it will be a challenge for me but, I'm confident I can do it that way'. He did say that there was a small chance he'd have to change it to a TAH when he got, 'in there' and so it proved to be. The plan was to remove womb, tubes, ovaries and send lymph node samples off to the lab and then a short course of RT as belt and braces.

To begin with, it was very hard to tell friends and family that I had CANCER, and for several weeks after the last biopsy in November, having asked my first specialist to be honest about what she thought would be the likely diagnosis, I couldn't actually say the word. It was always the 'Big C' or something similar. The weekend after my formal diagnosis, with the inspiration of a suffering friend from Belfast, I decided it was time to go public on Facebook and wrote about what was happening to me. By lunchtime that Saturday, I'd had 50, yes 50, messages of support from friends. I'd already asked my Manager to tell as many as possible at the Council where I work and at my request, she passed on the email I sent to her. The incredible messages of love and support I received made me cry a great deal but I'm so glad I made everything so public, having only told a select few friends and immediate colleagues prior to that. I sat down with my previous Manager, over a coffee for a no holds barred session, as she'd had massive breast cancer just 3 years before. That was all organised by those two Managers and was the making of me and for which I will always be grateful as it must have been tough for her too.

By the time I went in to Southampton GH for the surgery, I'd become strangely calm and peaceful, which I personally know was the result of huge amounts of prayers from Christian friends, colleagues, the Winchester Cathedral community where I go to church and my few family members.

I've never worried about general anaesthetics so, one moment I was awake and the next back in recovery and onto the ward, where I can't claim to have experienced as much pain as I'd expected. I discovered that I'd had some unexpected complications with unknown adhesions so, I'd had to be 'unpicked' as the surgeon described it, he'd had to ask for assistance from a second consultant surgeon and it has resulted in a vertical incision, about 50 staples and an extra two hours in theatre. Although I used the morphine pump attached to my arm, I don't think I really needed it and would not have bothered had I not been told I must use it. My catheter was removed the next morning and I was up and starting to walk to and from the loo the morning after surgery, uncomforable though it felt.

I was terrified about going home to where I'm a lodger, knowing I had no physical support and living conditions are very confined. My fears were proved right when, on the 6th day, my wound broke down and I was pouring blood and gunk all over the bed, the floor, everything. I cried all over the staff, my poor surgeon who was an absolute rock, the Sisters and eventually my fears were taken seriously and Social Services involved to assess me for some rehab care in a nursing home. The Socal Worker recommended it immediately and after about two and a half weeks, a place was found for me in the Little Haven NH on the edge of the New Forest.

Whe I arrived there, the staff were absolutel angels, I was the youngest there by about 30 years and I gained 30 new Grandmas. I had a lovely room overlooking the gardens and my well being and recovery absolutely rocketed, Within a week, I made huge strides and was able to walk up to the local village - about 300 yards away - and back, provided I rested in the cafe before walking back. I left there after about two and a half weeks and went home again.

I was taken aback to feel incredibly tearful and weak for ages after that, having thought I'd moved so far forward. My doctor took me in hand, as did the surgery nurses as they dressed my still open wound every other day. It took approx two months for it heal sufficiently for my four sessions of radio therapy to begin.

When I was in the Nursing Home, I had to go to see the surgeon and he joyfully and joyously delivered the result that everything was clear with only a need for short course of RT as belt and braces. As I write, on 2 May, that is now finished and I'm close to seeing the Council Occupational Health company to see what hours I can go back to work. HR and my Manager have told me only to expect to be working very few hours to begin with and that they want me to take things very easily and steadily.

I know I've been incredibly lucky and supported by a vast number of friends and I'm intensely grateful for so much. I've met so many lovely caring people through the group and hopefully, I've been able to at least put a small amount back and offer care, advice and comfort to others who have these situations yet to come and be faced. If so, I've done what I believe I was put here for.

God bless.

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Is Womb Cancer the Forgotten Cancer?

2/6/2014

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On the Jeremy Vine show today on BBC Radio 2 one of the issues they discussed was the lack of sexual help and support for women with ovarian cancer.

This prompted a discussion in the WCSUK private chat group as to why the discussion focussed just on ovarian cancer when women with womb cancer have the same issues.

Womb cancer is the 4th most common female cancer in the UK, indeed more women are diagnosed with womb cancer than with ovarian yet it is very rarely talked about in the media or given any publicity. There is no national awareness campaign so women will continue to be diagnosed with a cancer that very few of them know anything about.

There is plenty of publicity about ovarian cancer and cervical cancer so why not womb cancer?

Well, there could be several reasons! One is possibly that womb cancer is easily treatable (if caught early) and the survival outcomes are quite good compared to ovarian and cervical, even when they are caught early.

Another reason could be that womb cancer is seen as a cancer that post menopausal women get - although we know that the cases of younger women being diagnosed are on the increase.

Womb cancer is also seen as a cancer that women somehow bring on themselves for being obese and lazy - yet again we know that is not the case. Statistics show that only around 40% of womb cancer cases can be attributed to obesity - what about the other 60%? Where is the research being done to explain the causes of these women being diagnosed?

Whatever the reasons, one thing is clear. 23 women each day in the UK are being diagnosed with a cancer that not many of them will know anything about and that needs to change. The numbers will only go on increasing unless there is a national awareness campaign.

Ignoring it won't make it go away. Those of us that have had it should not be the ones that are doing all the talking about womb cancer. We have enough to deal with in our lives - diagnosis, treatment, side effects, etc , without having the added pressure of being the only ones out there raising awareness of this cancer.

It is time for womb cancer to be talked about as much as other cancers - and we need all the voices we can get to help us be heard.

xx Kaz xx

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Womb Cancer Wednesday!

My story of womb cancer - by DF

My Womb Cancer Story - by L.F

Is Womb Cancer the Forgotten Cancer?

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