A Peachy look back over 2013.

As we reach the end of 2013, its time to look back over the past 12 months.

We started of the year by being honoured with the One Team One Goal Advocacy Champion Award(Europe). It was for playing our part in the global coalition-building campaign that unites all gynaecological oncology practise and advocacy groups in signing and supporting the Union for International Cancer Control (UICC) World Cancer Declaration.

 

 

 

In June, we became a member of Cancer52, http://www.cancer52.org.uk/ an alliance of 60+ small cancer organisations who offer support and advice for the less common cancers. It is hoped that by joining forces, all of our voices will be heard as we seek to address the inequality and improve outcomes for patients.



 

In September we held our 1st get together. A group of around 20 women who are part of the private chat group on Facebook got together for a weekend of awareness raising and general "getting to know" each other. Most of us stayed in the same hotel and on the Saturday, we held a photo shoot at a local landmark known as the "floosie in the Jacuzzi".

 

 

 

The awareness raising continued, as always, through the year. New ladies have joined the main page and the number of likers now stands at 837 with 115 in the private chat group.

 

We are reaching out to ever more women and are there to offer to mutual support and advice. The private chat group is a confidential haven for the women to talk in complete privacy about things; and we constantly hear from the women how much they value this space.

 

 

WCSUK is constantly networking with other cancer awareness groups and as many other organisations as we can in the hope of raising awareness of womb cancer.

 

Both myself and Debra were very pleased to be asked to become part of the team of writers for Beauty Despite Cancer http://www.beautydespitecancer.co.uk/blog/ the wonderful website run by Jennifer Young.

 

Networking across Facebook and Twitter brings you into contact with some amazing people - Chris Lewis is one of them. I first came across him on Twitter and his blogs are so well written and speak for a lot of us cancer patients. http://chris-cancercommunity.blogspot.co.uk/ 

 

I have also had the privilege of writing a blog for the Saatchi Bill website http://saatchibill.tumblr.com/ about how innovation can help womb cancer.

 

So, as we look forward to 2014 and our 3rd Birthday in April we can reflect on another good year of raising awareness about womb cancer and more importantly, doing what we set out to do in the first place; offer support and advice to women who are going through or have been through a womb cancer diagnosis.









The Day My Life Changed!

Four years ago, on 23^rd Dec 2009, I heard the words that everyone dreads “I’m sorry, but  you have cancer”

I was alone in the house, and heard the voice of my gynaecologist down the phone explaining to me that the results of the MRI scan I had recently had indicated that I had endometrial, or womb cancer.

In that moment, I stepped aboard the cancer rollercoaster – and I’m still on it 4 years later!!

Surgery, chemotherapy and then radiotherapy followed and then I looked forward to getting back to normal – but I soon realised that there is no “normal” and my health would never be the same again.

I look around me now and see women within the womb cancer support group who, although having to cope with the side effects of their treatment and the hormonal consequences of going through a surgical menopause, are getting on with their lives.

They are back at work; going on holidays; getting on with life! All the things I want to be able to do! I used to love going camping and walking around the lovely island I live on, off the west coast of Scotland.

Four years down the line, my health is worse now that it was when I was diagnosed. Apparently, I am one of the unlucky ones!

Since my treatment ended I have been diagnosed with severe depression; an epi gastic hernia; an underactive thyroid; lymphedema in both legs; I have bowel and bladder problems as a result of the radiotherapy; cognitive issues and memory problems as a result of the chemotherapy; I also have severe fatigue due to not sleeping properly.

To say I am a little p****d off is putting it mildly!

It sometimes feels that having cancer was the easy part – it's dealing with the after effects that is hard work.

I know I’m not the only one who is having  to deal with this; but it sometimes feels like it. Trying to explain to family and friends that just because I no longer have cancer that doesn’t mean that everything is ok!

Living on a small island also means that medical and aftercare facilities are very limited so most appointments involve going to the mainland, which in itself is tiring and only adds to the problem.

We see and hear stories every day of people who have “conquered” cancer and gone on to live fulfilling lives - but we hear very little about the people for whom every day is a struggle.

I don’t want sympathy – I, and the many others like me, just want people to understand how hard it is for us to get through each day.

If you have a womb cancer diagnosis and would like some support or just someone to chat to then join us on the Facebook page https://www.facebook.com/WombCancerSupportUK

My Story - by P.S

Another in our series of stories by women who are part of WCSUK.

My Journey started 2 years ago; seems like a lot has happened in those two years The lead up to the start of the journey started on 7th October 2007, my birthday, when I suddenly had a bleed after not having anything for 12 months. I thought this was normal because I did go to the doctor and explain it. I was 52; he said it was menopause and would finish soon.

That bleed did stop as suddenly as it started. The months rolled on and sometimes I had a little spotting, some months nothing. Then suddenly again I started to get really heavy losses, very frightening and draining. I also started having heavy discharges which meant I needed protection every day. I was prescribed iron tablets and Tranexamic acid.

The last heavy loss I had was in October 2010; we were going out and as I stood up to go out the door and had the biggest flood you could imagine, it was all over the floor. It happened 3 times that night. I didn’t go out.

I did go to the doctors again and told him I had no quality of life left; I couldn’t go anywhere. He still said it was menopause but as I was 55 he would do a blood test and a scan. The scan came back inconclusive; he said it didn’t show anything sinister up -  that word has come back to haunt my thoughts many times since.

He changed his mind in a matter of seconds and said I think I will send you for a Hystroscopy. I was bleeding continuously; not heavy but mixed with the discharge it was quite uncomfortable.
This appeared to gather momentum between waiting for hysteroscopy and I appeared to be loosing cells and unidentifiable things, usually at weekends when doctors was closed. I did try to harvest some of it but it never happened at the right time. I hadn't  told anybody in the family up until that point so it was confession time.

My husband came with me for the hysteroscopy. I was terrified. I have a major fear of needles and apart from the odd broken arm and twisted ankles, I had never been in hospital to stay.
I don’t remember much about the hysteroscopy but I will never forget coming round from the hysteroscopy and the surgeon was at the end of the bed; her face said it all. She said it wasn’t what she expected to find and said she would see me the following Tuesday.
She gave me a card with an appointment on and disappeared. I was then given a box of needles and told I would have to do them myself. It was never going to happen, so I had to  have district nurse reluctantly do it. Tuesday took ages to come round.

Off we went with a heavy heart to the maternity hospital for the results. She didn’t try to wrap it all up - she just said "we have found Cancer". It was at that point all the walls fell in on top of me.
She left me with the CNS to try and explain what was happening next. She gave me a load of paperwork and some food to take before op.
The day of the operation came round too soon.  The bit I will never erase from my memory was the 4 or 5 people round me trying to get somewhere to put the needles in. They were cutting my stockings off trying to stick them in my ankles; the back of my hand; inside of my arms. I was so scared.

The operation itself was not as bad as I imagined it was going to be; my first thoughts on coming round were "they haven’t done it" - you hear of people being opened up and being too ill to be operated on, I thought I was one of them! 

I spent 4 nights in hospital with my little card telling me what I should be doing and when day 2 came  I could get up so I did; that made me feel a bit sick so I got told off for that. Decided I wasn’t a good judge so just waited till I was told what to do!

I was up on my feet on 3rd day. I left hospital on day 4 with another 2 carrier bags of needles and was seriously bullied by the nurses to do this myself - another battle of wills which again I won.  I had to trek up to the Dr's every day for the injection.

The appointment came round for the results of Hysterectomy.  This was another shocker -  the Cancer had spread to the outside edge of the womb. I know that because the CNS did a drawing and told me I would need further treatment.

She said I would probably need radiotherapy which they do for 5 days. I stupidly thought that would either be 1week Monday to Friday or once a week. When I went to see the Oncologist he told me I would be having 25 lots of Radiotherapy and 2 Brachytherapy.
I was stunned at the 25 radiotherapy and had never heard of  Brachytherapy. He then told me I had to go for a CT scan and have marking tattoos.

I was just wondering when it was all going to end - it seemed to be on a banana slide getting worse and worse. I was then told it had a 25% chance of coming back. I knew so little about my illness and having not spent much time at hospital, I didn’t know anything about CT Scans and was stunned that you need yet another needle for that.
I couldn’t stand anymore needles. I needed some Emla cream to numb the area; so off we went for tattoo and Radiotherapy. Thinking at least it will soon be over; just 5 weeks and its all going to be done and dusted.

God how stupid was that?

I've realised now it will never go away it will be always hanging over me. 2 weeks from finishing the radiotherapy, the Oncologist called me in for what I thought was a review.  He dropped a bombshell that he had found enlarged lymph nodes in my chest.
He was convinced it was a spread of Cancer and had arranged for me to go to hospital in Birmingham to have a lymph node biopsy via bronchoscopy. More worrying and waiting!

The result of that was no Cancer was found - what a relief.!!!
But no, the oncologist wasn’t happy and opted for 12 months of comparison CT scans, which meant more needles.

They all came back clear -  Phew! I can breath a sigh of relief now!

Well no; the last CT scan showed a blood clot on my lung. So yet more needles and warfarin brought this sorry tale to a rocky conclusion in June 2013.

Good Cancer/Bad Cancer?

Sometimes you hear some cancers referred to as a "good" cancer or a "bad" cancer - it seems my cancer, womb or endometrial, is regarded as a "good" cancer because if its caught early, as mine was, then its treatable and the long term survival rate is very good; around 80% will survive the magic 5 years!

Other cancers are not so good. Some are quite aggressive and not very easy to diagnose until a much later stage, meaning that the long term, even the short term survival rates are very low!

Getting a cancer diagnosis is often a hard thing to accept and patients often spend ages agonising over the "why me?" question.

Imagine how much harder it must be to have a much loved family member get a diagnosis - especially when the diagnosis is of a rare, aggressive and possibly inoperable "bad" cancer!

Cholangiocarcinoma, or bile duct cancer is rare, with around 1,000 new cases each year in the UK. The outlook is apparently not very good, as its rarely diagnosed at an early stage so by the time it is finally diagnosed the outcome is very poor and its usually inoperable.

The feeling of helplessness that I feel as this cancer takes hold of someone I love is very hard to deal with. Knowing that the outcome is far from being a positive one makes it even harder to bear.

As with all cancers, the answer lies with awareness and research. Hopefully this will mean that less people will get this type of cancer and those that do get it will have a better outcome!

Might well be a bit late for my Mom but while we have hope, there is always a chance!

UPDATE: Sadly, Mom passed away on 5th Dec, just 5 weeks from getting her diagnosis. She is sadly missed by all of us. xx

F**K CANCER! Part 2

If you read the previous blog post you will know that cancer has entered my life for a second time; however its now a close family member that is affected, which for me, seems harder to bear than my own diagnosis.

It's tearing me apart to see someone I love so much being worn down by a rare and aggressive type of cancer knowing that there is nothing I can do.

We hear so much about people "fighting" cancer; it seems that every cancer patient has to become a champion fighter in order to beat the dreaded "c" word!

But what about those who choose not to fight? Does it mean they are somehow not as good or weak willed? Do you only deserve to beat cancer if you fight hard enough?

I have admired the way that former Dr Feelgood guitarist Wilko Johnson has handled his terminal diagnosis of pancreatic cancer; they told him back at the beginning of 2013 that he had 10 months to live. He decided against having chemotherapy that might only have given him a couple of months extra and is still here, playing gigs and enjoying his life to the full.

Listen to him explain why he made that decision.

Sometimes as cancer patients we have to accept that fighting is futile and although it may hurt those who are the closest, we hope they will accept the decision.

All cancer patients are brave - those who choose to fight to the end and those who accept the end is inevitable and bow out gracefully.

It doesn't mean that cancer has won; it just means that those of us that are able to fight will fight even harder for everyone else.

F**K CANCER!

Sorry for the language but let's face it, there isn't really any thing nice to say about cancer, is there?

Getting a cancer diagnosis hits you like a brick in the face; it turns your whole world upside down in a split second - those words "I'm sorry, but its cancer" seem to hang in the air for far longer than they should!

Being diagnosed with cancer is probably one of the worse things that can happen to anyone - ask most people and that would be their number one fear!
It puts you on a rollercoaster that never seems to stop.

Having been there and done that, so to speak I thought I was toughened up by cancer, but sadly not.

There is only one thing worse that getting a cancer diagnosis - and that's having a close family member be diagnosed, especially if its a rare, seemingly inoperable cancer!

That's what has happened to me this week.

I felt like I had lost control of my life when I stepped aboard that rollercoaster nearly 4 years ago but its even worse now. To feel so helpless and unable to take away the pain is unbearable. I would rather go through it again myself than see someone I love go through it.


There will be dark days ahead, and many trips on that rollercoaster for everyone in the family, but we will get through this.

I just wish cancer would f**k off and leave us alone.

There is more to Womb Cancer Support UK than just a support group!

Womb Cancer Support UK started back in April 2011 as an online support group for women with womb cancer.

As a womb cancer survivor I realised that there was very little specific support out there for women going through womb cancer, so I started an online support group.

Based on Facebook with a main page and also a private chat page we have slowly grown and now there are over 870 on the main page and 117 in the private chat group.

But we are more than just a support group.

It soon became apparent that there was very little out there about womb cancer - indeed many of the women who are in the group had said that they had never heard of womb cancer before they got their diagnosis.

So we began to raise awareness as well as offer support to those women who had been diagnosed.

We are raising awareness of the signs and symptoms in the hope of getting other women to be womb aware and know what to look out for.

One of the ways we do this is by encouraging women to share their story by writing for our blog.

We have featured around a dozen stories from womb cancer survivors - women who bravely shared their stories in order to help raise awareness.

We are also on Twitter and network with a lot with other cancer charities and support groups to help raise awareness of womb cancer.

If you are going through womb cancer, or know someone who is. then please feel free to come and join us.

We are on Facebook here https://www.facebook.com/WombCancerSupportUK but we also have a website here http://wombcancersupportuk.weebly.com/ and you can follow us on twitter here
https://twitter.com/WombCancerUK

There is strength in numbers and we need to raise the profile of womb cancer so that there is the same level of awareness about it as there is for other female cancers.

Our motto is - No one fights alone!

No one wants cancer as a job!

I had started this blog last weekend but didn't find the time to finish it but was pleased to see that another blogger, Chris Lewis from http://www.chris-cancercommunity.blogspot.co.uk/ had picked up on the subject.

I scrapped the original blog so here is a brief summary of what I would have said - please pop over and read Chris's blog for a much more eloquent article. He writes so well and I would urge you to follow his blog as it's very good.

In a brief article that Jennifer Saunders, of Ab Fab fame had given, she apparently said that some cancer patients wear their cancer like a badge!

She was quoted as saying "You get so much attention and, if you’re not used to that, I bet it can sway you a little. I’m used to it. My job gives me the attention I’d otherwise crave. They must be so p****d off when their hair grows back"

Now, as you can imagine, this didn't go down too well with the ladies in WCSUK!!!
Comments ranged from "insensitive", "cruel", "smug" - fair to say that many of the women were not impressed with her attitude towards fellow survivors.

She may think that some cancer patients/survivors like the attention they get but I've yet to meet one who does!!

It would seem that she needs the attention at the moment - she's got a book to flog!!!

How cancer affects how you see yourself!

How we see ourselves plays an important part in what we think about ourselves; our self esteem. Some people are more concerned about this than others but even people who would normally not bother about the way they look can find their self esteem takes a fall when they are going through cancer treatment.

Lets face it, you'd have to be a pretty strong character to not worry about loosing your eye brows and eye lashes along with all your other body hair.
And its not only female patients who feel this way; many male cancer patients can find themselves uneasy with their new body image post cancer treatment.

Body image issues have often been ignored by the medical profession and patients have been left to pick up the pieces alone and try to get on with life as best they can but as more and more people are now surviving cancer, an increasing number of GPs, psychol­ogists, and social workers are beginning to  focus on body image issues to help im­prove the long-term quality of life for survivors.

Most cancer patients experience temporary treatment-related physical changes, like hair loss during chemo, or fluctuations in their weight. Others might have permanent changes, like surgical scars.

It seems that, temporary or permanent, these changes can negatively affect how you see your body. Even changes within your body that are not visible,  like having a hysterectomy, can have just as negative an impact on your body image as external physical changes.

Often, when treatment has ended, close family expect you to somehow put it all behind you and move on. However, it can take time to adjust to and accept your post-cancer body, and it’s important for us to do it at our own pace, until we feel comfortable with our body again..
Try and accept that your body has changed and that there may be new limitations on what you can and can't do.

Try and do gentle exercise as this will help not only your physical health but also your mental health.
Try not to compare yourself to other cancer patients or even other people in general. We are all different and all have bodies that will react to treatment in different ways.

Don't be hard on yourself either; you and your body have been through a lot so its going to take some time to get back on an even keel.

Pamper yourself occasionally; try and eat healthily and if you are having problems adjusting then don't be afraid to ask for help. There are support groups up and down the country and if you are really struggling then ask you GP to refer you to a counsellor so that you can talk about your issues.

My Summer with Cancer

This is a guest blog piece by a peach sister from US.

I was diagnosed with uterine cancer in early May, met my oncologist in late May, and  underwent surgery (radical hysterectomy) in late June.
A week later, I got the news that my cancer had been Stage 1a (earliest stage) and I would need no further treatment. I spent June and half of August on medical leave to recover and heal.
All in all, it feels like I had cancer for a summer. I belong to the cancer survivor club now, but it almost seems like I cheated to get into this exclusive club. 
On blogs and other social media, I’ve read some horrific stories about what other women have gone through in treatment and recovery from this cancer. It doesn’t seem fair, somehow, that I had such a relatively easy time of it though my doctor assures me that my case isn’t unusual. 

I don’t really know how long I had cancer. I had been experiencing post-menopausal spotting for over a year. I informed my menopause doctor and she adjusted the hormones I was taking.
Indeed, it could well have been just a hormonal issue in the beginning. Eventually, though, the spotting became more regular, never a lot, but always there. I got off the hormones, but the spotting continued. I discussed the problem with my doctor, who said it could be several things and I should get a sonogram “just to rule out cancer.”
I went the next morning and the results came back that same afternoon. Wow – that was fast! I read the report but didn’t understand it.
The doctor called and told me to get a biopsy next. I understood now – I had failed that first “test.” On Friday I met my new OB/GYN, Dr. D, and got the biopsy done. She told me the results would be ready by mid-week, but on Monday afternoon I got a call from her office. I couldn’t take it as I was about to give a training at work, but inside I thought “uh oh – I bet I failed that test, too.”

When I got home that evening, I saw that the clinic had sent me an e-mail. I expected to read something from Dr. D about the biopsy results and instead saw that my menopause doctor had written. She was sorry to hear about the cancer and hoped I would have a quick recovery. WHAT?! That was it. No details. She had falsely assumed that I had already spoken with Dr. D about the situation.
I wanted to talk to someone, but I’d have to wait until the next day to call the doctor. I contacted some friends, all of whom freaked out more than I had. The ‘c’ word packs a powerful punch.
The next day, Dr. D called (horrified that I had found out in such a way), gave me the details, and said that a gynaecological oncology office would call soon.
I had to wait a few weeks to see the oncologist; a good sign, I felt, that my condition wasn’t dire. By the end of the month, I had met with the oncologist, scheduled a surgery date, and informed colleagues, friends, and family.
Some reacted strongly, some were calm. Everyone said they’d help out during my medical leave. My daughter was away at college, but we stayed in touch frequently. My son, who lives locally, would move back in for the first week post-surgery. 

Most of the time during this period, I was calm. I never experienced pain, just the continued spotting. In fact, my job had been so stressful for the past year and a half that I eagerly looked forward to a break. Sadly, my colleagues understood this all too well.
I am fortunate that I have short-term disability insurance with my company and qualified for full-pay leave up to twelve weeks (this is not a given in the USA) though the standard medical leave for this surgery is six weeks, which is what was approved. Some of my friends in other jobs would have to take leave with no salary if this had happened to them.

On June 25, I had laparoscopic surgery; the oncologist used the DaVinci robot to perform the hysterectomy. I was in the hospital for one night and then discharged with my five holes neatly bandaged. My friends carefully chauffeured me home, where my son was waiting for me.
Over the next weeks, I had many visitors, often bearing food. Once I could ride in a car again, some friends took me out. I read a lot, watched favorite shows, and slowly began to walk and regain my strength.

It’s been about three months since the surgery. Am I back to my post-surgery condition? Not entirely. I have no pain where the incision holes were, but my abdominal and back muscles are still weak. To my dismay, I’m going through a second menopause as my body readjusts to having no hormones at all now that my ovaries are gone.
I get to experience hot flashes, acne, and sleepless nights all over again. So unfair! But having cancer does give one a wake-up call. I’m working very hard on improving my diet and exercise habits.
I put my personal life before my work life much more easily now. I’ve taken a fresh look at what makes me happy and how I want to spend my time.
I’m buying flowers for myself every week, I’m reading much more, and trying to write my blogs more often (see below). I make a strong effort to stay in touch with friends, near and far. I’ve always been close to my son and daughter, both in their early 20s, and I’m even more motivated to stay healthy, so I can be around for them a long, long time.

Cancer is no longer the death sentence it once was for earlier generations, but it is still important to educate the public so that it is diagnosed and treated early. This is what motivates me to share my story. People often shy away from discussing cancer, but it’s only by bringing it out into the open that more people with cancer will be able to join the survivors’ club. 

Shoshanah

http://shoshwrites.wordpress.com/ (After the Fire)
http://shoshwrites2.wordpress.com/ (My Life in the Middle Lane)
http://shoshwrites3.wordpress.com/ (From Soccer Mom to Soccer Fan)

My Story - by G.W

Another in our series of blog posts by womb cancer survivors.

This is a story I actually did think I may have to write at some time in my life. Sorry if it is very long and repetitive but I feel as if I need to pour it all out.

 

When I was 10 years and 3 months old I started the first of 45 years of very heavy, very painful, flooding periods. My mother took me to see our GP and (in 1966) he told her that i was quite a "freak" as there was only one case of anyone he had heard of starting at the same age as me. I was really upset at this and my mother was never very sympathetic (we always had a very difficult relationship up to her death in 2007) - she had never told me anything about periods, nor had I been prepared for them in any way and I honestly thought at that age that I was dying with the amount of blood I was losing each month.

 

Over  the years, I had visited my GP several times and told him about the length of my periods - every 4 weeks without fail they would appear and last 9 -10 days - I think he was quite bemused that they were so regular and even though I told him about all the pain etc and that I suspected I had Endometriosis. I don't think (looking back) he took me seriously. However he did refer me to a Gynaecologist in 1981 (I had just got married and the same month my periods got even worse, if that was possible) After some tests he found that I had a Polyp growing on my cervix - the size of a cherry he said. He said he would remove it straightaway in the clinic as leaving it on my cervix could have meant it turning "sinister" as he put it. Well, within minutes he DID actually remove it, without any pain relief whatsoever! He just inserted the speculum and snipped it off and held it up to the light for me to see! Yuk! I was in so much pain - I actually went back to work that afternoon but my husband had to collect me and take me home.  I stayed there for 2 weeks of even heavier bleeding and cramping. I was given a "sick note" for 2 weeks as I had lost so much blood and could hardly walk.

 

What I didn't realise at the time was the Gynaecologist was telling me that some women are prone to polyps in their womb or cervix and some of them become sinister in later years. I remember hearing those words as if it was only yesterday. Just using so many pads and taking so much Feminax every month was costing a small fortune too. I always had to ensure I had at least one change of clothes and underwear with me - pale clothing was a definite No No. It restricted my social and working life such a lot.

 

Endometriosis was still never confirmed at that time and the painful periods carried on for 45 years in total. I must mention that throughout this time I was never free of bladder infections - these first appeared when I was 18 years old. Over the years I had loads of investigations and small operations/tests but no procedure was successful for very long and back came the pain and infections with a vengeance.

 

Fast forward from the polyp removal of 1981 to September of 2011. I was never free of really bad flu - this was relatively new for me as although I get as many bad colds/flu as the next person, I had never had it going on for so long without a break - this "flu" lasted from September 2011 to March 2012 - no break at all, in fact it got worse over the months. As well as this flu, the bladder problems had got even worse - I had been on antibiotics constantly for around 18 months. I was very concerned that the antibiotics had affected my immunity and that was why I couldn't get rid of the flu. I went back constantly to my GP and he just carried on giving me antibiotics - some for flu (which by March 2012, I had also developed a  very bad chest infection) and different ones for the bladder infections too.

 

 I was quite surprised at the age of 55 that I was still having  very painful, heavy periods. I used to "joke" to my husband that I thought they would never stop and they would always be with me.

 

At the end of March, eventually the flu got better but the bladder infections weren't getting any better and one morning in the same week I started experiencing dreadful period like cramps and excessive vaginal discharge/pinky coloured "bleeding" - I hadn't had a period since August 2011 so I was quite aware and worried that something was not right - even with the worst period that I had endured over the years this new "cramping" and dragging pain in my stomach (and back and down the front and backs of my legs and swelling in my legs) was something else. I put up with it for a week or so as I thought maybe I was going to have another period. When nothing came by the end of March, I went to see my GP. He said he thought it was the menopause and this was the "ending" of my periods. I wasn't convinced and I returned to him every 2 weeks and reeled off the same thing to him about the bleeding and cramps which were getting worse. At the same time, my bladder infections were giving me hell and I think I had just about reached rock bottom as I was so frightened, tearful and bloody angry that I was not being taken seriously and that something was so wrong but nobody seemed to want to investigate as it was being looked upon as "normal" for my age. Between March and September 2012 I must have been visiting my GP nearly every 2 weeks and still nothing seemed to concern him nor any of the other doctors I saw. - My GP was continuing to prescribe antibiotics which had cost me so much in the way of my health and finances.

 

Every day was a constant battle with my GP and other medical professionals. I was completely worn out with the stress of it all that I was ready to throw in the towel and I began to think "maybe it is just menopause after all".  I had nobody to discuss anything with as none of my "friends" talk about "these things" so I wouldn't know whether it was normal or not. Thankfully I did never stop going back to my GP and kept on and on at him that I think in the end he was sick of seeing me.

 

One day in early September, my luck started to change. My GP  referred me to the Practice Nurse for a smear test just to check my cervix after I kept on telling him the story about the Polyp of several years ago. I had always had regular smears - some even paid for privately by myself as I was always quite suspicious that every 3 years wasn't enough. Anyhow the Practice Nurse was concerned that I was getting cramps and bleeding and gave me the most painful smear test I had ever had. She said she was going to ensure enough cells were taken around the cervix and inserted the "brush" further into my womb just to "be sure". This was the 12th September 2012. I could hardly get home afterwards I was in so much agony - I was so convinced that by this time cancer was going to be found - I was just waiting for them to confirm it. I had never had pain like this in my life - I actually thought this was the end and I was dying. On the 18th September one of the other nurses at the surgery rang me to say the lab had been in touch and I had some suspicious cells growing into the womb and they had been "shedding" every month for around a year or so and they had been picked up on the slide. I can honestly say, that if I had not seen that Practice Nurse on that day in September that I don't think I would have been alive today, or at least the cancer would have been found at a much later stage.

 

Yes I feel VERY angry at my GP and other health professionals at the lack of awareness regarding Womb Cancer - I, and a lot of other women I later found out, had been ignored and made to feel a nuisance and all we were doing was trying to help ourselves.

 

Now starts my womb cancer journey itself: The ball had started to roll very quickly from the 2th September smear; 18th September I got the phone call about the suspicious cells, 25th September referred to a Gynaecologist for an examination, 5th October the transvaginal scan where I found out the thickness of my endometrium was abnormal, 8th October the very painful Hysteroscopy without pain relief and 16th October the actual diagnosis of my Endometrial Cancer.  I always knew I had cancer - it had been at the back of my mind for months so I wasn't surprised at all when she confirmed it to me. The 29th October, my first MRI scan which was absolute hell with the claustrophobia but I knew that somehow I had to go through with it. My Gynaecological Oncologist explained I had an early cancer. It was found that I had a Stage 1a, Grade 2 cancer, although I had been originally told it was Stage 1a Grade 1. 

 

 I was only in hospital for 2 nights and had a bad time from the anaesthetic,  and the lack of pain relief afterwards for nearly 4 weeks that I find I cannot ever forgive them for but I am trying my best to put it all behind me and if only I could get my bladder/incontinence problems sorted, maybe I could start living again - until then I feel as if I am still living in limbo.

 

In hospital I didn't feel as if I had a good experience, (apart from having an excellent surgeon) I was put in a ward of geriatric 80 - 94 year old women. - nobody on the whole ward except me actually had cancer and the food was terrible so I was more than happy to go home after 2 nights even though I thought initially it was a bit too early. It was a cancer ward in a cancer hospital and I was told all these other women were there because there was nowhere else to put them!

 

My surgeon said that my hysterectomy had been difficult because I actually DID have endometriosis (after all these years I was finally getting it confirmed what I suspected all along). He said it was stuck to my bladder and bowel and he was amazed I had "been able" to put up with all the pain and discomfort for so long!!

 

Yes, my surgeon saved my life but it came at a price with my worsening bladder issues. Sometimes I think did stress contribute to me getting cancer? Yes I think it probably did - my parents both passed away separately in bad circumstances in their care homes in 2007 and 2008 and my wonderful husband had lifesaving heart surgery in 2010 after years of procedures. For years previously I had been bullied at various jobs I had worked at and life in general was very very stressful.

The only positive parts of my journey were "meeting" all the wonderful ladies in the Womb Cancer Support Group whom have been my rocks since I was diagnosed.




 

 

The road to recovery by D.V

Another in our series of blog posts by ladies who are part of WCSUK.

My hobby, running, has been a part of my life for over 10 years. I came to it late; I didn't even think about taking it up but my dad dying of renal cancer in a hospice started me thinking about it. I decided to do the London Marathon to raise funds for them as they had been so good with dad and the rest of the family.

So I started. By the time I was diagnosed with womb cancer I had done 14 marathons and countless other races and I had raised thousands of pounds for the hospice and various other charities along the way. I have found a whole lot of new friends through my hobby and look forward to meeting up with them at races all over the country.

My last marathon was in early October 2011; Loch Ness Marathon. It was the 4th time I had run the race but I had a terrible time. I really couldn't understand why I was struggling and came away from Inverness feeling despondent and had more or less decided not to do it ever again.

Well, the rest is history really. I didn't recover physically from the marathon and things got very nasty. I was diagnosed with womb cancer in January 2012 and had to have a total hysterectomy followed by radiotherapy.
Out of the two, the radiotherapy has been the worst thing to get over. I had actually started to run again when treatment started but the stomach problems that can go with it put paid to me doing very much at all for a few months.

My stomach probably won't ever be the same again. I have to be very careful of what I eat on the days I run and the day before my long runs. But I am running again!

It has been a struggle though. I lost almost a year of running due to womb cancer and of course I am now 10 years older than I was when I first started. I am very slow and I get tired very easily but I am plugging away.
I suffered from late onset radiotherapy symptoms in January and February when my stomach was as unpredictable as it was during treatment so I had to stop running for a while. Since then though, my training has been a little bit more consistent, although I have had a couple of injuries and had to miss the occasional run due to toilet troubles!

So where is my training leading? I'm going back to Loch Ness! This year's marathon is on 29th September and I can't wait to get back there. The race itself is going to be very slow for me and I am under no illusions about that but I am determined to enjoy my day! I'll be the one taking photos along the way............

My story was featured in the race magazine which I was very pleased about as that was one way of raising awareness of womb cancer. And awareness does need to be raised.


Every cancer patient knows how cancer can affect the mind. It's like we are almost waiting for a recurrence but I am trying to put this to the back of my mind and enjoy my life. And my running is one way of doing just that!

Turning Birmingham Peach for Womb Cancer Awareness

This time last week Birmingham city centre had the pleasure of seeing many pairs of peach knickers being shown in broad daylight, and with the full knowledge and co operation of the local constabulary!!

Let me explain!!!

As most of you know, WCSUK is based online and therefore many of us ladies have never met before. So I decided to organise a meet up.
So last weekend, around 20 of us gathered in Birmingham for the inaugural WCSUK get together!

We had a meeting in the morning, at which the lovely Jennifer Young from Defiant Beauty http://www.beautydespitecancer.co.uk/ gave us a brief chat about her company and her wonderful products that are designed for cancer patients.

 

Then after a break for lunch, we had a walk through the city centre up to Victoria Square. If you know Birmingham at all, you will know that is where the local attraction known as the floosie in the Jacuzzi is!



This is where we held our photo shoot! The sun was out and so soon were the peach knickers!! The ladies had fun showing off their peach undies in the sunshine and some of them even persuaded some of the local constabulary to have their photo's taken with us.

 

 

We had loads of fun and did manage to raise awareness - after all, people are going to stop and ask why we were waving peach knickers around, aren't they??

Also in the area were a group of young people who were dressed in animal costumes so some of our ladies went across and had their photographs taken with them. Turned out one of them had a Mother who had had womb cancer - small world!

The weekend was a great success and we hope to repeat it next year and also have smaller regional get-togethers throughout the year.

It was wonderful to finally meet so many of the women that until now I had only known through FB and the weekend will be remembered for a long time.

Here's to all the Peach Ladies of WCSUK!

My Story of Womb Cancer - by J.H

Another in our series of stories told by women who are part of WCSUK.

I was diagnosed with womb cancer on 28th June 2013, aged 39.

I had been undergoing various fertility tests after stopping oral contraceptives in October 2012, as my then finance and I were trying to conceive our first child. My periods simply never came back.

After 3 months of waiting, wondering if I was already pregnant (and exhibiting some symptoms of same) we went to my GP. Blood tests were taken, which initially suggested Premature Ovarian Failure. I wasn’t happy to just leave it there, and was referred for an ultrasound. The nurse wouldn’t let me see the screen, and simply said “I’m going to be seeing you again”.


The results came back at the end of March, showing cysts on my ovaries and what was described as “scarring” in my womb. By this point my insane mood swings, the constant worry, the sleepless, sweaty nights in addition to working 60-70 hours a week had taken their toll– my fiancé and I parted company after nearly 3 years together.

I was booked in for a hysteroscopy, biopsy and D&C on my 39th birthday, in the belief that this would “solve” the problem and kick start my periods. It didn’t. On referral to a gynaecologist, (who advised me my surgery results were clear) it was suggested further tests should be performed, before I could commence fertility treatment in October. I had resigned myself to lone parenthood, but didn’t feel I should give up on my one dearly and long held dream simply because I had no partner to share it with.

Then I got a letter. Please attend an appointment on 28th June, you require further treatment.

I knew as soon as the nurse asked if I had anyone with me that something awful was coming. I never considered cancer, and I hadn’t even heard of womb cancer.
Within 5 minutes I had been told that my womb would need to be removed, and my dream of becoming a mother was over forever. I wasn't afraid of being ill; I wasn’t afraid of dying – even when it was explained to me very clearly what would happen to me if I left it untreated. I was heartbroken by the very nature of the treatment.

The surgery itself was complication free, and the indication is that the cancer has been removed, although I will need scans every 2 months for the next two years to check, as I kept my ovaries. Although surrogacy has been suggested, I simply can’t bear to watch someone else’s body do what mine can’t on my behalf. Even if I came to feel differently, I don’t seem to be producing eggs anyway. Devastated doesn’t even come close. I feel a failure as a woman. I waited until it was “right” to try to have children, only to have it snatched away.

My recovery has been good, although I am exhausted most of the time. The emotional scars will take longer, if they ever heal at all. People keep telling me I should be grateful – don’t get me wrong, I didn’t want to die, but I find it hard to be happy that the only thing I ever really wanted to achieve will never happen.
The reactions from those around me have varied from the supportive to the dismissive. My fiancé and I were reconciled and were married 4 days before my operation. I’m eternally grateful he has two children already; the guilt would have been unbearable knowing I denied him the chance to be a father, though I know it has hit him hard too. My closest friends have rallied round and done everything from collecting prescriptions for me to arranging charity events in support of womb cancer research. I have had messages of support from friends around the world, some of whom I have never met in person but who seemed to know when a funny text or email was needed.

Others, people I considered to be almost family have shunned me. One because they didn’t agree with my marriage, one for reasons best known to herself. I’ve been accused of “faking” my illness, it has even been suggested that I didn’t have it “that bad” as I didn’t need chemo. These reactions say far more about the people having them than they do about me – I have chosen to rise above it, but the rejection at such an awful time has been hard to deal with.

My job now is to be the best wife, step mum and friend I can be above all. My next priority is to do what I can to raise awareness of this silent, sneaky, thief of a disease for other women like me.

Cancer stole my hopes and my dreams, but it didn’t get my life. I refuse to let it steal anything else.

Travel insurance and cancer

A guest blog post by Fiona Macrae from Insurancewith.

A diagnosis of womb cancer should not have any effect on your ability to travel, however many people find that after a cancer diagnosis they do have difficulty finding travel insurance to cover their cancer at an affordable premium.  It was this very problem that led me to start my own travel insurance brand Insurancewith.  

I was diagnosed with breast cancer in 2005, and during a 2 month treatment break, I had my chemotherapy first and the next stage of treatment was surgery, so in order to give my body a chance to recover from the chemo and get ready for the surgery I had this 2 month window. 
I was desperate for a holiday; a break away from the hospital routine would be just the tonic I needed, then come back and have my surgery. 
I was an insurance broker so I did know that I would need to pay more than the standard cost, however was I wasn’t prepared for was to be completely turned down for cover, even from the providers who said they were specialists. 
It seemed that the problem was that I hadn’t had the cancer removed yet so on one would insure me.  This sent me running back to my oncologist terrified that I had a ticking time bomb inside me and this wonderful treatment break I had been given didn’t seem so wonderful after all. 
She quickly reassured me that the chemotherapy had done it’s job, shrunk the tumour and killed any stray cells so waiting until my body was back to a normal level after all the chemotherapy I’d had was doing me any harm at all. 
I went back to the specialist travel insurance providers with this information thinking that with my insurance broking skills that they would surely offer me cover now.  Unfortunately it was still a blanket no, I was told “it’s still cancer”. I knew that there must be a far better solution; how many more people must be in my position of being declined travel insurance cover due to lack of understanding of cancer and the rapidly changing treatments. 

This is where Insurancewith started and we have been going over three years now, offering affordable travel insurance for people with medical conditions, however due to my background with cancer, cancer is probably our specialism.  
We do try very hard to try and offer everyone a quote and we do very rarely turn the person down for cover, it may be the destination or the timing of the holiday; for example you would have to be clear of any chemotherapy or surgery for 4 weeks before we would offer cover. 
With regards destinations, an idyllic remote island may sound perfect, however they may not have suitable medical facilities should you need them, so we may suggest a more suitable destination.  Or depending on your condition a long haul flight may not be advisable.

My top tips of obtaining affordable travel insurance after a womb cancer diagnosis would be:

* Firstly ensure that you consultant or treating doctor is in full agreement with your travel plans
* Check there are good medical facilities at your chosen destination
* When looking for quotes for travel insurance, have a note of the date of your diagnosis and dates of any treatment, along with what medication you are currently taking.

http://www.insurancewith.com/

Struggling to move on after cancer?

It's hard to move on after having cancer. Your life will never be the same again and it can take a long time to adjust to the new "normal".

It can be made even harder when family and close friends see the end of your  treatment as the end of you having cancer - but we know its as simple as that.

Coming out of a cycle of having regular visits to the hospital for treatment; seeing familiar faces at each visit, whether is be other patients or medical staff, can be a daunting times. it often feels like your safety net has suddenly been removed.

I walked out of my last radiotherapy treatment session and felt abandoned - cast adrift!

Many cancer survivors feel the same way. Your family, glad that your treatment is over, wants everyone to put it all behind them and move on, but we often find it hard to do so.

They often don't want to talk about the cancer, just at a time when we really need to talk about it, about how its affected us and how we feel. This can often leave us feeling isolated and alone, as we keep quiet so as not to upset anyone.

Often, well meaning friends can cause upset by saying that you look well, or that you must be glad to be back to normal. Many of us end up with long term side effects from out treatment and we often feel much worse that we ever did before the treatment started - but it is so hard to explain to someone who has not had cancer how bad the problems can be.

That's why support groups, either in the real world or online are vital in providing a safe place for people to come and talk to others who know exactly how you feel. You don't have to keep explaining things over and over again and why you feel so tired all the time; why you find it hard to adjust to the new normal; why you can't move on and forget about cancer.

WCSUK is just that sort of place. A safe place for women who have gone through, or are going through, womb cancer. Because we all understand what the other is going through, we know how we are all feeling.

We are, and will always be, there for each other.

Is womb cancer a weighty issue?

Well, womb cancer finally got the amount of publicity that we have fighting for ever since we began - but sadly its not really the type of publicity we really wanted!

World Cancer Research Fund today released a report http://www.wcrf-uk.org/about_us/media/press_release.php?recid=221 saying that 4 out of 10 cases of womb cancer could be prevented in the UK if women were more physically active and a healthier weight.

Whilst we acknowledge that obesity and inactivity can be a factor in women being diagnosed with womb cancer, to focus so much on this fact does little to raise awareness of the fact that in 6 out of 10 women obesity is not an issue!

There are many of the women who are part of the WCSUK chat group who are not obese; far from it. There are also active women in the group, marathon runners even!
This report and the many media outlets that reported it have focused on the obesity issue and its quite upsetting for some of the women who feel that they are in some way to blame for getting womb cancer.

Focusing on the obesity angle also means that women who are not obese might be mislead into thinking that they are not at risk of getting womb cancer, when again we know that is not the case.

We believe that all women need to be aware of the risk factors regarding womb cancer because it can affect women of all ages and sizes!

Until there is a national womb cancer awareness campaign that raises awareness of ALL the risk factors and the signs to look out for then we will keep doing what we do to raise awareness amongst women and offer support to those who have received a diagnosis.

Awareness over the airwaves

In the "good old days", raising awareness of cancer would have been a lot more difficult than it is now. Most people got their information from either their GP or district nurse!

But we now live in the 21st century and information is available from a variety of sources, and we need to make use of as many of them as possible.

Since WCSUK began, back in April 2011, we have been using the internet and the world wide web to raise awareness of womb cancer. We have our website and Facebook page; we tweet on twitter, and we write blogs here.

What else can we do?

Well, this Friday we are taking over the airwaves via internet radio!!!

In fact, we have been advertising on an internet radio station since the beginning of the month - 5 times a day!!!

Radio Bute is based on Isle of Bute, off the west coast of Scotland, which is where WCSUK is also based. I have made a mini information ad that is being played 5 times a day throughout the whole of September for Womb Cancer Awareness Month and this Friday I shall be on air between 2pm - 4pm to talk about womb cancer so I hope you can join me.

If you click on the link then click on the "listen live" link you can pick your option and listen in to the show.

I do hope you will join me.

My Story - by HC

Another in our occasional series of blog posts by ladies who are part of  Womb Cancer Support UK.


The first time I heard the word "cancer" was when I was diagnosed with a recurrence! I know that sounds bizarre, but it's been a long story - let me explain:

In 2001, when I was 43, I started to get some "missing" periods and also some bleeding between periods. My periods had always been very regular - I'd never had children so had never missed even one, so it was unusual for me and having first ruled out pregnancy, I thought I may be entering the peri-menopause. My GP thought the same, but he was vigilant and ran all the usual blood tests etc, which showed nothing abnormal. My mother had been diagnosed with womb cancer a couple of years before, so the GP and I agreed that it would be sensible to get some expert advice. He referred me to a gynaecologist who said that he, too, thought it was probably nothing, as I was on the young side for womb cancer. However, he recognised that I was pretty determined to get some answers, so he suggested "cutting to the chase" and performing a D&C (dilation and curettage) to take a look. He didn't expect to find anything wrong and after the surgery he said that everything looked normal to his eye. So he was very surprised when the pathology results showed atypical hyperplasia, which can be a precursor to cancer. As I was not intending to have children, he suggested a hysterectomy.
So in October 2001, I had a hysterectomy and my ovaries removed. It all went according to plan - my recovery was textbook and the pathology results showed no cancer, so it was assumed that any atypical or potentially cancerous cells had been removed by the D&C. I was sent on my way with the words "you're cured, go and enjoy your life".

It was 7 years later, in November, when I experienced further episodes of pinky discharge and bleeding. So I went back to my GP. I was living in a different town by then, but requested a referral to my original surgeon as I had been very impressed with him during the previous treatment and he was a top notch gynaecological oncologist. After various tests, scans, trans-vaginal biopsy etc I was told that there was a mass present at the vaginal vault - but that the pathology was negative for cancer. Big sigh of relief. My surgeon even said "go and open the champagne", as I am sure that he had thought that this was cancer and he was as relieved as me that it wasn't. We decided that he would operate to take a look and remove it, but as it was benign there was no urgency and it could wait until the New Year.

However, 10 days after that phone call and a few days before Christmas, I got another phone call from him. He was incandescent with rage - he had the unenviable task of telling me that the pathology results had been issued to the MDT (multi-disciplinary team) before they were "final" and that when the final results were issued, they showed that I did, indeed, have a Grade 1 cancer.
I had a recurrence, even though no cancer was ever found at the original hysterectomy!

He spent an hour on the phone talking me through the options and said that the MDT recommended external radiotherapy and that he would set up an appointment with the clinical oncologist to plan and deliver the treatment. In all, he spent about an hour on the phone with me, carefully answering all my questions and helping me to understand what was going to happen. He then asked me to pass the phone to my husband. He then went through everything again with him, to make sure that we had both heard and understood what was happening. Next step was a fast track appointment with the clinical oncologist, who was equally caring and answered all my questions. I was told that external radiotherapy was being performed with curative intent and that they reckoned that there was probably a slightly greater than 50% chance that we could zap the tumour for good with this treatment.

Then followed a raft of appointments, preparation, tattoos - all the fun of the fair to ensure I was ready for external radiotherapy as soon as possible. Imagine - a week before Christmas when you are in full swing shopping, cooking, cleaning etc, with family coming to stay, to have the bombshell of cancer dropped on you after thinking you were clear. Then having to drop everything and make numerous three hour round trips across the county in order to get everything in place to start radiotherapy in the New Year!

Well, Christmas came and went and I was determined to behave as normally as possible in public. Of course, I was pretty frightened, but I tried not to show it when there were others around and I tried to
host Christmas in the usual way. After all, it is my favourite time of year and, quite frankly, I didn't know how many more Christmas's I might have left, so I wanted to try to enjoy this one.
The six and a half weeks of radiotherapy started in early January. I suffered the usual symptoms of loose bowels, tiredness, burnt skin etc made all the more difficult by the long three hour daily journey to and from the cancer centre. I had asked my oncologist to "ramp up" the dose of rays as high as she dared and from my own research, I know that she did. I was relatively young and otherwise fit and strong and I knew enough about this type of cancer to understand that we really only had one shot to get rid of it - if it came back somewhere else in the pelvis, or spread, then the prognosis would most likely be very different.


I had a MRI scan three months after the treatment ended, which showed that the tumour was shrinking but was still there. I was disappointed but my oncologist assured me that it was normal to see this and that we would scan again in another few weeks. At that point, the tumour had disappeared. We were joyous. It stayed like that for two and a half years and my oncologist started smiling at our regular appointments and saying "it's more than 2 years now - this is looking promising". But it was not to be.

I started to get some pelvic aching and discomfort and then I started spotting again. Another round of scans and the terrible news that it was back again. But I always look for the silver lining and this time it was found in the fact that it had not invaded any vital organs and was confined to the pelvis. However, it was wrapped around my colon. I went back to my surgeon. By now we were old friends and he greeted me with the most enormous hug. He said that it was operable but that it would be difficult because of the previous surgery and radiotherapy. He also broke the news that a large part of my sigmoid colon would have to come out and I would need a colostomy. It was news that I had been dreading, as I always knew that if it came back after the radiotherapy, then a colostomy was a probability. However, at least I had had some forewarning that it could happen, so I had researched it and knew what to expect if the worst happened. I asked him in the nicest way whether he was the best man for the job or whether somewhere like the Royal Marsden would be a better option. But he is a wonderful man and wasn't at all offended by my directness. He explained carefully about his experience and I was sure that he was the best person for the job. As well as knowing my "insides" better than anyone else, he had also had a career as a general surgeon before specialising in gynaecological oncology, so I knew that I was in good hands. He is also the neatest surgeon I have ever come across - whenever anyone looks at my scars, it is not unusual for them to comment on the neatness of the needlework!

Surgery went ahead and when I woke up in the recovery room, he was standing there holding my hand. I remember his words "You probably won't remember this conversation later, but I just wanted to tell you that everything went OK - but it was challenging and difficult". A few hours later, when I was back on the ward, completely wired and wide awake due to the drugs they give you to bring you round, he came to see me again. He asked me what I remembered and I told him "you said I was challenging and difficult". He smiled as he was surprised that I remembered. Then he took me through the whole thing and explained that there was a lot of radiotherapy damage and scarring which made the surgery difficult and that he had done the best he could, but he was a bit concerned about whether he'd been able to get a clear margin on the left side. As always, he was managing my expectations as skillfully as it is possible to do.

I went home and started to learn to deal with my colostomy. We gave her a name - Edna - it made it easier to refer to if I ever needed to be excused to go and deal with her. "I just need to check Edna's OK" is much easier to say in public than "I need to go and check on my colostomy". It was a challenge, but not half as bad as I had imagined. I was worried about it showing through my clothes, but the specialist nurse had helped me mark the best spot on my abdomen before surgery and my surgeon had placed it right on target, so it is quite low and I can wear most of the things that I did before the surgery. My husband was very supportive. He encouraged me to do a little more every day and not to shut myself away from the world.
I bought a larger handbag so I always had an emergency "Edna kit" with me. He helped me go into town, stop for a coffee, pop into the supermarket. All the things that were normal but that I was afraid to do now. He always made sure the car was close by and he knew where all the public conveniences were in case I needed them. I gradually learnt that no one was staring at me and no one needed to know about Edna unless I wanted to tell them.
I was the same person I had always been, albeit with a slightly different kind of plumbing. But I was quite weak in those first few weeks and a post op wound infection knocked me back. Every time I moved it felt like a chinese burn across my midriff. But antibiotics sorted it and I gradually got stronger.

When the pathology results came through, a couple of weeks after the surgery, it was exactly as the surgeon said it would be. The margin on the left side wasn't clear but he could have taken no further tissue, due to the structures lining the pelvic side wall. So a course of 6 cycles of carboplatin/taxol chemotherapy was the next phase. Back to my oncologist for pre-chemo assessments, bloods etc. and then the chemo started 5 weeks after the surgery.

Well, what can I say about chemo? It varies for us all. One thing is sure - the hair goes, and quickly! Every hair on my body - eyebrows, lashes, underarms etc was all gone as well as my poor head. I got through the bald phase with a combination of wigs, scarves hats etc. It was winter and bitterly cold, so some days I wore a wig and a hat when I went out. The worst was at night, when my poor little bald head got so cold. I bought a stretchy cotton sleep cap. I chose red, because I thought it was a cheerful colour. What a mistake - when I put it on I laughed until I cried - I looked like a Swan Vesta match!

I fell into a sort of pattern with each chemo cycle. I would have the infusions on Wednesday and go home feeling fine. I was OK for 36-48 hours and then by Friday afternoon/evening I would feel like I had a bad dose of flu with aching limbs and crushing tiredness. I would rest up until it eased, usually on Monday and then I would gradually feel OK again and live a semi-normal life until the next infusion. It was tough, but do-able and if I had to go through it again, then I could do it.

The chemo finished in January 2010 and I started to get back on with my life. There were no guarantees that it would work and my oncologist, when asked whether it would cure it said "well, it is possible, but then again I wouldn't be surprised if it resurfaced again within a couple of years". I decided to retire and take my pension early. I didn't want to get to the end of my life and think "I wish I'd retired earlier".

My oncologist was right. By December 2011 I was starting to get some pelvic aches and pains. A PET scan showed no uptake but there was a mass on the left hand side which was assumed to be scar tissue. The discomfort continued and gradually got worse until I was on ibuprofen or paracetamol all the time. It kept the pain under control but by April 2012 I had a nagging doubt that there was something wrong.
My oncologist agreed. "You know your body - pain has nearly always been an indicator for you of something wrong" she said and ordered another scan. This time it showed uptake by the mass on the left and another, new, tumour with uptake on the right. One of tumours was also constricting the urine flow out of one of my kidneys - not life threatening but something that needed watching and might require the insertion of a stent before it damaged the kidney.

This time, surgery was not an option. The scans showed the tumour too close to the pelvic sidewall so they could not get at it without damaging the major arteries and nerves serving my legs. I sought a second opinion. Not because I doubted my clinical team, but because we were running out of options and I needed to know that I had done everything I could to try to find a cure.
The Royal Marsden came to the same conclusion - too close to the pelvic sidewall and also some evidence from the scan that there could be other seed tumours, which, in turn, could mean that there was other spread in the body. So surgery wouldn't be any good unless they could get everything with clear margins. Less than that would just put me through a major procedure (probably removing the bladder this time) for no real gain.
It was a huge disappointment but, in some ways a comfort to know that the Royal Marsden were no more able to do anything than my own clinical team. I knew my team were good, but now I had proof that no one could do better than they had done.

 
The treatment proposed was hormone therapy. My tumours are highly oestrogen and progesterone receptive (meaning they "feed" on these hormones) The treatment is aimed at suppressing my body's production of oestrogen and therefore "starving" the tumour. I started it in June 2012. It is not an arduous treatment - one tiny yellow Letrozole pill per day. The side effects can include hot flushes (what's new), joint aches and, over a longer period, deterioration of bone density.
So far, I have the flushes (but I did before) and my joints are a bit stiffer than they were. But who knows if this is the drug or general ageing? I was scanned three months after starting it and it showed that the tumours were shrinking. The right one was no longer visible on the scan and the left one had shrunk down in size - still there but under control. The kidney was now draining freely. It has been like that for more than a year.
I know that this is not a cure. But I also know that there are patients who have kept their disease under control for years on this type of treatment. I also know that the body has a tendency to become immune to hormone therapy after a while. However if one type of hormone has worked, there is a good chance that a different one will, too. So I hope that if this one stops working, then I will have success with another one.

I walk through the valley of the shadow every day. This evil disease sits on my shoulder like some demanding devil-child seeking attention. But I will not give in to it. Occasionally, it's presence is heavy and I long to put it down. But it is not to be and I will not let it spoil the rest of my life.

Considering what I have gone through, I am generally fit and well and enjoy most things as I always did. But is it me, or is the sun brighter, the birds' singing more glorious and the changing seasons more beautiful - or do I just value them more now I know how precious time can be?

I remember my late father in his latter years, when burdened with a number of chronic debilitating illnesses. Someone once said to him "how do you feel today". He replied ""I woke up this morning - it is a good day". God Bless you, Dad. That's how I feel, too.

September is Womb Cancer Awareness Month.

Well, its now September 1st and that means we are at the start of  our Womb Cancer Awareness campaign 2013.

We have been running an awareness month since 2011 so this will be our 3rd campaign.

We have lots planned and we hope that you will join us in raising awareness of womb cancer.

It's regarded as a rarer cancer, but still almost 9,000 women each year in the UK are being diagnosed, with around 1,900 dying as a result. And the numbers are rising!

That is why campaigns like this are vital in raising awareness of a cancer that not many women have heard of.

Most women know all about checking their boobs and going for a mammogram to detect breast cancer and going for your smear tests to detect cervical cancer, and again most women have heard about ovarian cancer, but time again we hear from women who had never heard of womb cancer until they were diagnosed with it.

There are no national womb cancer campaigns, so its left to women like us - survivors and women who are living with womb cancer - to shout from the rooftops and help raise awareness and stop the numbers of new diagnoses from rising.

If you are on Facebook then you can join us here https://www.facebook.com/events/407060296081957/ and be part of our campaign to turn FB peach.
From there you can access our FB page and print off some posters to display at you local health centre or surgery. You can also request some leaflets which we will gladly send you that you can ask your surgery to display; or indeed anywhere that women will see them!

Throughout September we will sharing with you here some stories from women who have gone through womb cancer. These women have agreed to share their story to help raise awareness.

We have lots planned so please join us on our FB page or follow us on twitter https://twitter.com/WombCancerUK and keep up to date with what we are doing.

Together we are stronger.

Fight like a girl? You bet I do!!!

Trying to raise awareness of womb cancer can sometimes be a hard task, especially as WCSUK has no resources other than the wonderful women who are part of it.

So any opportunity to "walk the talk" that comes along, is usually taken and this week I shared my story with the Fight Like a Girl Club on their website http://www.fightlikeagirlclub.com/

You can read my story here http://www.fightlikeagirlclub.com/2013/07/kazs-fight-like-a-girl-story-womb-cancer/#.UfvXy3ZwbIX

If you'd like to share your story and help raise awareness then fill in the form here http://www.fightlikeagirlclub.com/power-stories/share-your-story/#.UfvYIHZwbIU

You can also share your story with us here - email us at wombcancersupportuk@hotmail.co.uk for more details.

Kaz

When September Calls!!

Well, it's getting around to that time of year again.......... no, I don't mean Christmas!!!

September will soon be here and that means Womb Cancer Awareness month is nearly upon us again.

This September will be our third awareness month and we've already started planning things!

As usual we will be turning Facebook peach again. This is where we get as many people as possible to join us and change their profile pic, preferably on a daily basis to something peach coloured. Its just a bit of fun but it often gets people asking "WHY" and then we can tell them!

It's all about raising awareness of womb cancer!

I am also holding another online auction of handmade goodies to raise funds for the research project that we are involved with https://www.facebook.com/notes/womb-cancer-support-uk/about-dr-elliss-research/202283526516431

The auction will be on Facebook and can be found here https://www.facebook.com/WombCancerResearch 

What else have we got planned? Well, you might have to wait until a bit nearer the time to find out as there are still a few things to sort out.

But if you've got any idea's on how to raise awareness or want to get involved and do something in your own area then please get in touch with us at wombcancersupportuk@hotmail.co.uk

 The more awareness we can raise about womb cancer the better. We need to reach out to women of all ages, as we know only to well that womb cancer is not just something that post menopausal women get.

Please get involved; help spread the word and lets go peach for womb cancer awareness.

Let down by Race for Life! - by D.V

One of our peach sisters did the CRUK Race for Life today - here is her story of the day!

I was diagnosed with womb cancer in January 2012 having had a terrible few months with symptoms. At the time of my diagnosis, I was told that I was in the minority in that I was under the age of 60 and fit; my hobby is running and I ran 5 marathons in 2011, the last one being just before my symptoms started.
I have since found out that I am not really in the minority. I have, through WCSUK, been in contact with women much younger than I.

Last year, shortly after my radiotherapy finished, I took part in a Race for Life where a cancer survivor stood up on the stage and spoke about her experience of breast cancer. I said to my friends that I would want to do that this year. So a few months ago I contacted Cancer Research UK Race for Life and asked about speaking at their Hyde Park event. They agreed and it was arranged for me to speak before both the 10k and 5k races.

So this morning, I arrived nice and early (8am) and found I was due to speak at 8.08am but they seemed to be a bit disorganised; the sound checks hadn't been run at that point. One of the organisers came to me a while later and explained that they were running behind time and would like to concentrate my efforts before the 5k race after I had run the 10k. Hmmmmmmmm!
There was a lot of nothing going on at the time but I suppose these things happen eh? I did point out that, because of the heat, I would probably take longer than I thought originally and asked to be scheduled as late as possible; I can't run in the heat at all and really suffer. I was told that would be ok.

Off I went and I struggled round the race; it felt like I was melting at times! As soon as I finished, I headed back to the stage where I was told, again, that they were running behind schedule. I was told they would like me to speak at the start of the race and that I would be taken down there just beforehand. I was starting to feel a bit like the poor relative by this time.

A little while later, one of the organisers came and got me and I went behind the barrier and then she instantly disappeared! I waited for a good 15 minutes and she didn't return. I was getting slightly hacked off by this time so I decided to just walk away.

I am quite hurt that this happened to me. I have been looking forward to today and getting the message out about womb cancer. This was a chance to reach around 15,000 women at the same time across the two races and I feel very let down.

There were a couple of key messages I wanted to get across.
There are several conditions that make a woman pre-disposed to womb cancer (being overweight, being childless, being diabetic, being unfit and being over 60). I was none of these. So I wanted to get the message across that this is a cancer that can strike ANYONE at ANY time of their lives.

From experience, some women are under the impression that their cervical smear would detect womb cancer but this is not the case. The only time it would detect it would be if it had already spread to the cervix.

I also wanted to point out that womb cancer is on the rise and that obesity could be a factor going forward as the extra fat in our bodies causes oestrogen-like hormones to be produced and womb cancer is mainly hormone receptive.

Now, I consider those messages are vital for the women in this country. There is no awareness campaign going on and there are no plans for any in the near future so ANYTHING that can be done to bring this disease to the forefront should be done.

Womb cancer is considered one of the rarer cancers so I am wondering if the Race for Life organisers just didn't think it was worth the airtime. How does that make me feel? It makes me feel that possibly my cancer has been discounted. If you think about it, the main colour of anything Race for Life is pink. That is the colour associated with breast cancer. Do they see that as a more worthy cancer to promote? I certainly hope not.

All in all, I have been left with a nasty taste in my mouth. My cancer was just as important as any other cancer. At the end of the day, cancer is cancer and to get that diagnosis is devastating. It denotes the end of life as you know it and a new life going forward. One that has you wondering if 'it' is going to return. One where you possibly have to life with side effects of treatment, as I and many other of my peach sisters have.

And I now find myself wondering if I will bother with Race for Life again. After all, they couldn't be bothered about me could they?