Blog Posts - Womb Cancer Support UK

Well Hello September.

1/9/2020

Well, here we are again. Today is the 1st September which means the start of womb cancer awareness month. This year is our 10th campaign and although we raise awareness every day of the year, during September we try to really step it up and make as much noise as we can to #GiveWombCancerAVoice.

As a very small organisation it has been hard work to be seen & heard over the past 10 years but we have tried very hard not only to raise awareness but to give a voice to the many women who have been diagnosed with womb cancer.

Back in 2018 I wrote a blog post here about why September matters for womb cancer. I still find it shocking that the most common gynaecological cancer & the 4th most common cancer to affect women does not have an official dedicated national awareness campaign.

The amount of awareness around for womb cancer was low 10 years ago when WCSUK started and sadly it is not much better now, despite us doing what we can. We have distributed almost 20,000 of our awareness leaflets up and down the UK. They have been placed in GP surgery & hospital waiting rooms, libraries, cafes, pharmacies, and countless other places.

The lack of a dedicated womb cancer charity has not helped; although we are a small dedicated organisation we don’t have the clout that a charity does. Happy to say that things are about to change on that front pretty soon.

This month sees the launch of Peaches Womb Cancer Trust, a charity that will be focussing on awareness & research. You can read more about them in a future blog post later this month.

So the future for womb cancer awareness is looking “peachy” and once September is over we can take a step back and have a bit of a rest. 10 years of talking about womb cancer has certainly taken its toll on my mental health. I have been lucky to have a small band of fellow survivors who have been with me along the way and have helped to #GiveWombCancerAVoice but it's now time for us to focus on what we were created to do and that is support those who have been diagnosed.

We will always be there for our #PeachSisters because #NoOneFightsAlone.

Another year goes by.

17/7/2020

10 years ago today, was my 47th Birthday. It was a day I didn't think I'd see after being diagnosed with cancer 7 months previously.

The intervening years have not been good; I've lost both of my parents, my Mom suddenly & unexpectedly to a rare type of cancer called cholangiocarcinoma or bile duct cancer & my Dad a couple of years ago to sepsis & my own health, both physically & mentally has deteriorated to the point where I rarely go out of the flat.

They say cancer changes your life, which it does but rarely for the better.

It ruins marriages and other relationships; it leads to massive financial hardship in many cases; it can end good careers & it forces a lot of us to totally revaluate the things we hold dear to us.

Of course, some good things do come out of it - like making new friendships & meeting people that you may never have thought of before.

Sometimes it can be hard, especially if you are in a position like I am where you are surrounded (even if it is only online) by others who have also been diagnosed & you seen people moving on after their diagnosis & getting some normality back in their lives.

Of course this may often be just what appears on the surface, in reality they may be struggling too but just don't show it. There seems to be this need to portray cancer patients who survive a diagnosis as "hero's" or "thrivers" but if you don't live up to what others, notably family members, think you should be then it can have a serious affect on your mental health.

I've heard from so many women over the years who say they are struggling but won't say anything to close family members because they don't want to worry them so they bottle everything up & just get even more stressed out & then mental issues get worse & worse.

Better mental health support is needed for cancer patients, & it needs to be long term. The fear of a recurrence is never far away. Even after many years it is always lurking at the back of your mind, just waiting for an unexplained ache or pain to occur & then it jumps out of the darkness & starts running riot in your brain.

Quality of life post cancer is important. It is no good surviving cancer if you can't live the rest of your life to the fullest. Maybe asking to live your life as if cancer had never shown its ugly face is asking too much..... but then again maybe not.

So today it is my 57th Birthday. It will be a day like any other, nothing worth celebrating. It's been a very long time since I had anything worth celebrating.

Cancer robs you of so much, but you have to go through it to understand that.

What we all fear - by NP

31/1/2020

Reoccurrence… The word each and every one of us fears the most. 'You have cancer' is hard enough to hear the first time round but what about the second?
In November 2016 I was diagnosed with endometrial cancer. It was found by mistake, part of another routine operation, and my life changed there and then. The consultant asked if I understood, I said I did, but I didn't. I didn't understand the impact cancer would have on my life. A radical hysterectomy later and no further treatment required. A long year of recovery, surgical menopause and getting back to normal. A sigh of relief and a 'thank God that's over' little did I know what was round the corner.

Fast forward two years to the day, there I am, same room I had my initial diagnosis, legs akimbo, having a biopsy. No symptoms of reoccurrence but a small lesion at the bottom of my vagina. The consultant told me the chance of cancer was very small. I'd heard that once before, two years ago, when I was 'too young for cancer'. A week later I was at work and I started to bleed..I hid in the toilet but it didn't stop.
I rang 111 and ended up at A&E.. I thought that was it, my time was up.. A mass pv hemorrhage later and I was hooked up to two pints of blood in resus. That was the moment they told me… Semi conscious after almost bleeding to death.. Your cancer is back. Oh.. And its metastic so its automatically stage 4, possible spread to the liver.. Tests.. Scans…All I could think was I'm lucky to be alive so I'll deal with that tomorrow. I told my family in resus, the last time they saw me I was semi conscious so I think they were just relieved I was alive, so no-one had time to process unlike if I'd been told in a normal appointment, we just accepted it.

I was transferred to a ward and the next morning was visited by the oncology team.. They re-iterated the same conversation; Stage 4.. do you understand? Yes, I understood, I understood it was time to get back on the cancer rollercoaster.

The weeks that followed were as expected; tests, scans, more tests, recovering from the blood transfusion, traumatised that everytime I'd go to the toilet I'd be bleeding, thinking yet again about my own mortality.

Anyone who's had cancer will tell you the same. After the anger comes the 'why me?'.
43 years old and cancer twice. What did I do to deserve this?
After this comes acceptance. Then the plan. Everyone waits for the plan. Once it's in your hand the control is passed back to you and you can begin to process the shock.

Radiotherapy and brachytherapy followed, neither were pleasant. But even though I'd had no adjunctive treatment the first time so many things were familiar. The oncology nurse knew me well, she could tell me what would happen, reassure me. When she did my holistic needs assessment (for the second time!) I remember the conversation well. She asked what my biggest fear was.
It wasn't dying, it was uncertainty. Everyone dies someday and when your times up its up. My biggest fear was that it wouldn't work. My CNS told me a story about another lady she supported who has lived an amazing life for 15+ years (so far) with reoccurant endometrial cancer. She told me this was the first line treatment, she told me about all the other treatments that I could try if this didn't work, she gave me the one thing everyone needs.. Hope.

Ten weeks later and treatment was over. It was nowhere near as scary as the first time round. The environment was familiar, the people were familiar, the tests were familiar, the routine was the same, the familiarity was safe. Nearly a year on and I'm still recovering from the side effects of the mass blood loss and the treatment, but each day I remember I'm lucky to be here.

Reoccurrence, a scary word.. In reality not as scary as you imagine it to be.or you build up in your mind. The fear never really leaves you, it just get less and less each day. You still worry about every lump and bump, but no worse than the first time round, no worse than the fear that every cancer patient has.
And if it's 'third times a charm' for me then so be it. I will remember the words of the CNS and how many options are still out there for me.

I will never let cancer win.

No end story - but life goes on.

23/12/2019

Today, 23rd December, is a date that will live in my memory for ever. It is the day, 10 years ago that I was told I had womb cancer.
The diagnosis came completely out of the blue and changed my world forever.
I was being investigated for fibroids and cancer had never been mentioned so when I was told, over the phone, that a recent MRI had detected a tumour, I just fell apart.
10 years on, I am still living with the after effects of it all.

Every year that comes round, I look back on what I've lost and realise that cancer has changed my life forever.

The one thing that bothers me the most is that I've had no closure. I have never been told that the cancer has gone or that I'm in remission. I never had the chance to draw a line in the sand and say "now I can move on".

When I started WCSUK, I never for one moment thought I woudl still be doing it now. I started the organisation in April 2011 because I could see a need for a UK based mutual support network for women who had been diagnosed with womb cancer.
I had gone looking for something when I was first diagnosed and found nothing other than a couple of US based online support groups. I figured there must be other women in the UK out there who wanted support so I decided to set something up - and we're still going strong today.

I've said many times over the past 10 years that I regret having the treatment that followed my surgery. I was initially told beforehand that I would probably not require any further treatment as both my gynaecologist & surgeon were 99.9% sure that all the cancer qould be removed and further treatment would not be needed.
As it turned out, the top guy, the oncologist, thought otherwise and so I had to endure chemotherapy & radiotherapy and I'm still living with the consequences.
Had I known then what I know now I would have refused both and taken my chances.

Many people have told me over the years that I should be thankful that I no longer have cancer but I don;t feel that I have anything to be thankful for.
My life is a living hell and no-one other than my husband knows how hard each day is for me. I also live with the guilt that his health has suffered so much because he now has to look after me despite having his own serious health issues.

Several times over recent years I have considered backing off from WCSUK because of the health issues, both physical & mental that I have to deal with on a daily basis and to some extent I have but as it has gotten closer to this milestone I had seriously been considering stopping doing what I do. Not closing the organisation down but just letting it run on without any input from me.

Right up until last night, I still hadn't made my mind up on what to do.

It was only upon logging on this morning jist before 8am and finding a message from one of the young ladies who had been diagnosed earlier in the year that I made my decision. She is really struggling wth the thought of having to face her first Christmas knowing she will be surrounded by family members, some with young children and new babies knowing that she will never be a mother herself. She said that the support she had received from the other women in the private support group had helped her so much and she thankked me for having set u the organisation and for being there for her.

I thought back 10 years and remembered how scared and frightened I felt when I was told I had cancer. I remembered all the times I had cried myself to sleep over the following nights that Christmas. I also remembered all the times since April 2011 that I had received messages & emails from women who had just been diagnosed and felt as scared as I had. The messages I get from women who have finished their treatment and been given the all clear.

WCSUK, and specifically the private support group we have on FB, helps so many women to deal with their diagnosis. Knowing they have someone they can talk to who knows how they feel, someone who "gets it" means so much to them.
I know it would have helped me so much all those years ago.

The organisation has never been about me but about all the women who find us and support each other along our individual journey with cancer.

So ths morning, as I sit hear drinking my coffe and listening to the birds stirring as the light brightens outside I have finally decided that WCSUK will go on and we will always (for as long as I'm alive) be here for any women who finds herself in that dark place that I was 10 years ago, hearing those words "I'm sorry but you have cancer"

No-one fights alone.

My womb cancer story by S.H

22/9/2019

I’m a trans masculine non-binary lesbian and was diagnosed with womb cancer last year at age 37.

I always had problems with my periods being heavy and painful. I was diagnosed with PCOS and endometriosis. I struggled to get doctors to do anything about it as I had no interest in having children.

My periods got even worse than usual and my doctor prescribed txa. It all finally came to a head in December 2017 when I collapsed through blood loss and had to go to A&E. That triggered them looking into the problem but meant a series of tests which I found very difficult to deal with given my gender dysmorphia.

They gave me a smear test, an internal and external ultrasound and they attempted a hysteroscopy but I couldn’t cope with that so I needed to have a second attempt under general anaesthetic. They told me they’d take a biopsy while they were having a look “just to be on the safe side”.

Getting a call from the hospital saying I needed to attend an appointment first thing the following morning. It wasn’t exactly a surprise when they told me I had cancer. The consultant was careful to explain that treatment would mean I would be unable to have children. They seemed surprised when it didn’t appear to bother me but carrying a child had never been something I wanted to do. I am the youngest person they have ever treated.

I was lucky. It was caught early. I was stage 1a and all I needed was a hysterectomy with no further treatment. I live alone several hundred miles away from family and as I was unable to care for myself, my mother looked after me for ten weeks. I’m not out to her and stifling that part of myself for so long was painful. I became very passive.

The medical team don’t seem clued up on how to deal with someone in my situation. I still need regular checkups with my consultant and they involve an internal examination. When I expressed that I found anything to do with penetration difficult, they actually said “don’t you use toys?” Not those types I don’t.

I tend to present at my most feminine at my checkups. I’m surrounded by women in the waiting area and feel uncomfortable presenting masculine in what is a very female space.

I think more could be done in gynaecology for those who are LGBT+. Everyone’s experience is different but not treating us as stereotypes would help.

September is Womb Cancer Awareness Month

1/9/2019

Well, here we are again. September has arrived and that means just one thing - it’s womb cancer awareness month.
We will be spending the next month talking all things womb cancer related and trying to raise as much awareness as we can.

Sadly, as a tiny organisation with no advertising budget or paid staff or media contacts or celebrity followers we don’t get seen or heard in the mainstream media but that doesn’t stop us shouting from the roof tops and making a lot of “social media” noise.

I am passionate about raising awareness of womb cancer. The fact that it is the most common gynaecological cancer yet gets very little attention baffles me.
Why do not more women know about it? How many of them are at risk of getting diagnosed yet are unaware of it? How many already have the typical symptoms but don’t realise that they may already have it?

Go into any GP surgery waiting room in the UK and I bet you won’t find any information on womb cancer – unless one of my lovely #PeachSisters has left some of our awareness leaflets there.
Do you know that almost 15,000 of them have gone out around the country in the past 8 years? Not only are they in GP waiting rooms but also in libraries, gyms, café’s – even the ladies loo in a nightclub.

Womb cancer needs more attention & we will continue to shout about it for as long as we need to because it is a cancer that can affect women of all shapes & sizes. All women need to know about it and know about the risk factors and the signs and symptoms to be aware of.

So I hope that you will do your bit this September & help #GiveWombCancerAVoice.

Importance of female friendship by Margaret Chandler

18/8/2019

I have recently returned from a trip to Canada,where I met up with my penpal Julie, who I'd corresponded with for 50 years, since we were both 10 year old Girl Guides. We'd met each other as 15 year olds in 1974 and again briefly in 2001, but this was the first time we'd met in Canada, thus fulfilling a childhood promise we made to meet one day in Prince Edward Island (PEI), the setting for one of our favourite novels 'Anne of Green Gables'. This is the 1908 novel by LM Montgomery, telling the story of the redhaired orphan Anne Shirley and the friendship with her 'kindred spirit' Diana.

Julie and I had a wonderful time exploring PEI together, visiting Green Gables, seeing Anne the musical and immersing ourselves in the landscape which inspired the novel. We had time to get to know each other more intimately and catch up with each others lives over the past 50 years, and despite some prior reservations about whether we'd get along, these worries proved unfounded.

Since returning, rather reluctantly, to the UK, it's given me time to reflect on the power and importance of female friendship and support. Despite celebrating my 37th wedding anniversary recently and having shared both good and challenging times with my husband, it has always been my female friends that have been a constant in my life, especially when life has been toughest.

I am always indebted to the NCT mums who were there during the early days of motherhood, when sleep was in short supply and the days and nights seemed to merge into one. You saved my sanity on many an occasion!

The most traumatic time of my life was being diagnosed with Womb Cancer over 6 years ago. I'd not heard of the disease before diagnosis and knew nobody with the condition even when I joined a Gynae Cancer Support Group. The lack of support and isolation took a toll on my mental health and I was referred to the local Psycho-Oncology Service where my health began to improve. However the most important support for me came from the virtual world, when I discovered WCSUK by chance whilst scrolling through Facebook 15 months after my diagnosis. It was at this point I realised I was not alone. These women knew exactly what I was going through and the true road to recovery began for me.

I was able to return to my Latin Fitness Camp Dance Class, a group of fun, supportive women who have joined me on several Race for Life events, raising money for Cancer Research. Since diagnosis and as part of my recovery, I have taken up cycling and become a member of Leicester Women's Velo. This group has helped me raise awareness of Womb Cancer on 2 annual bike rides during September, and have helped me reach cycling goals I could only dream of.

Finally I am so grateful to have recovered both physically and mentally from Womb Cancer that I was able to make this very special trip to Canada, an experience I will treasure for the rest of my life!

Womb Cancer and I - by Reija Kime

11/8/2019

I was diagnosed with womb cancer in March this year. At 42-years old, I had thought I was way too young to have womb cancer - wasn't it something that affected women past their menopause? Turns out it isn't and since being diagnosed I have come across many, way too many women of my age and younger, who have been affected by womb cancer.

Before I was diagnosed with womb cancer, I was very unaware of the range of symptoms that can be a sign of cancer in the womb and it is only afterwards that I have come to realise that there were plenty of signs; I just didn't know them. Didn't associate them with cancer at all and that is why we need to raise as much awareness about womb cancer as we possibly can.

I first went to the doctor last autumn. For a while I had been having longer and heavier periods and then the pain started as well. It was definitely time to go to see my GP. But still I didn't think there was anything in particular wrong with me. I thought the changes in my periods were linked to getting older and an approaching menopause (happens early in my family). So I wasn't that worried when I booked an appointment. However, I did choose a doctor at the practise, who is specialised in women's 'problems' and who I felt would look into the causes of the changes properly and not just prescribe a solution. Maybe it was sixth sense or whatever you choose to call it that made me choose her.

And she was brilliant. She referred me to a gynaecologist straight away. And in the meantime gave me some pills to help with the excessive bleeding and pain (however, these didn't really help that much; I found that regular painkillers worked better for me). She also put me on some iron tablets as I was severely anaemic due to the heavy bleeding.

I then had a few months wait for the gynaecologist's appointment during which time the periods got even longer and heavier and I was taking painkillers nearly every day even when there was no bleeding.

My gynaecologist appointment finally arrived early this year and in it they could tell that the lining of my womb had thickened and decided to refer me to a further exam where they could look at it in more detail and take a biopsy. I faced another wait. And consumed more painkillers.

From the second appointment where they took the biopsy everything seemed to go really quickly and now, when I look back, it is all a bit of a blur. I remember going back to the hospital to hear the results for my second exam. My partner came with me. So far I had attended the appointments by myself but some reason (perhaps it was the sixth sense again) I felt that I needed him with me for this appointment. And I was right.

I could tell from the doctor's demeanour straight away that the news weren't good. He had explained to me the possibility of cancer the last time I had seen him but I had not really thought it would really be cancer - how could it. Again, I was only 42! He explained to us that it was cancer and that I would need to have CT and MRI scans to establish whether it had spread and what treatment would be needed - other than a hysterectomy, which I would definitely need to have.

Within a few weeks from that appointment I had had my scans and was meeting with an oncologist, who explained in detail the operation I was going to have: a radical hysterectomy. To be honest, I had to Google it once I got home, as, even though he explained it all to me, I couldn't really take it all in. He also asked me what my plans were for next Friday and told me to cancel them whatever they might be - I would be having surgery then. So we were moving quickly. Much more quickly than it took the fact that I had cancer to sink in. To become reality. Although there are still plenty of times when all this just seems so surreal.

Eventually the news did (kind of) sink in - I had cancer and I was going to have to have my womb removed (thank God I didn't want any children) and possibly would need further treatment, too. My oncologist had mentioned the possibility of further treatment following the surgery but we had not gone into detail; they would have a look at what was needed after the surgery. For my part I was happy to focus on getting through one thing at a time; I would face whatever might come after the surgery. The idea of having major surgery was scary enough, let alone the thought of chemo after.

My surgery went really well and so did the recovery from it. Within just a week after it I was able to move about with ease and actually had to keep reminding myself not to do too much and cause myself damage. And by the time my follow up appointment with the oncologist came around, I was feeling very positive. Partly because I had read that often a
hysterectomy was all that was needed to treat cancer of the womb and I wanted to believe that this would be the case with me as well.

But it wasn't to be. Because the cancer had had a chance to spread to lymph nodes, I was going to need a course of chemo and radiation therapy. Now of course I knew of chemo and the side-effects from that but I had not been aware that radiation therapy was also used to treat cancer (how blissfully ignorant I was). It was explained to me that though there were no visible signs of disease after the surgery, I would need to have six courses of chemo followed by five weeks of radiation therapy and two sessions of brachytherapy to ensure that all the disease was gone and to stop it from recurring.

I have now had five courses of chemotherapy and only one remains (yay!). The hair is long gone but other than that it honestly hasn't been too bad. I know I am lucky with having had minimal side-effects; I have not been feeling nauseous at all and other than the hair loss, tiredness and a strange, sort of restless feeling in my legs a few days after a treatment, I have been feeling fine. In fact, thanks to the lifestyle changes I have made and not being in constant pain due to heavy bleeding, I am actually (ironically) feeling better than I have felt in a long time. I am now looking after myself properly, exercising and eating healthily and I know that I am going to beat this cancer.

Having mentioned minimal side-effects there is one thing that I have been suffering from: menopausal symptoms. Especially the hot flushes. I keep waking up at night drenched in sweat. And have several moments each day when I perspire heavily. But this will pass. I am willing to endure whatever I need to in order to be well again. And indeed, the last CT scan I had showed a fantastic response to the treatment; knowing that it is working makes it easier to remain positive!

This week I have had my planning scan for the radiation. I had to have it twice because the first time my bowels weren't properly empty; the second time was better and radiology team is now busy preparing my radiation treatment, which will start after a short recovery period after the final chemo, which is two weeks tomorrow. I know that I still have challenging weeks ahead with the radiation but right now I am looking forward to be able to say: chemo done!
And I am truly, impatiently looking forward to October when all my treatments will be done and dusted and normal life can (slowly) resume again.

In the meantime (and after as well, of course) I want to keep raising awareness of womb cancer because had I been aware of all the symptoms, I might have been fine with 'just' a hysterectomy and not needed chemo and radiation. It is vital to know the symptoms because, as with any type of cancer, the earlier it is discovered, the more effective the treatment will be.

If you wish to read more about my experiences and thoughts around cancer and many things related (and some not so related) - do check my blog

: https://letstalkaboutcword.blogspot.com/.

Life after Cancer by Kelly Kolkiewicz

4/8/2019

“This too shall pass” is a quote often used to console people in times of trouble. I hate it. In the long term, of course, we all pass and that’s the end of things for us (I’m saying this as an atheist). But in the short term, no, this hasn’t passed. I suffered from uterine cancer and the fact that I can’t have my own family will never pass. I have to live with it.
I have lost plenty of friends to cancer and have been/am numb with loss and grief. I remember a doctor soon after my diagnosis writing what I said to her in my medical notes “I have lost a lot of things”. What I meant was I have lost my health, my trust in my (previously very healthy) body, my peace of mind, the future I thought I was going to have as a newly-wed. I lost the ability to have fun, I was depressed, could no longer find joy in things. I cried every day for pretty much 2 years. Not all the time, but at odd moments, and still do. But how do you live with the after-effects of cancer? I’ve had to carve a life of moments and experiences and to find meaning and friendships that I wouldn’t have had otherwise. No, being ill was never a good thing, but some good things came out of it. I want to share with you what has helped me, because I was lost and felt I was floundering, but you can get through these things, and if you don’t, you can make things better for yourself and others along the way.

1. The best thing I did was join a support group. I was never a “join a group” or “talk about it” kind of person so I’m not sure why I did, but it was local to me, so I gave it a try. For information, it was “ The Healing Journey” at Paul’s Cancer Support Group in Battersea. At first it was a nightmare come true, all sat in a semi-circle and asked to talk about things (if we wanted to). Initially I didn’t take part, but the ladies running the group were experienced and compassionate and I soon realised that the more I took part in the (structured) discussions, the more I got out of it. I quickly made friends with more than a few of the participants and these friendships have survived to this day (10 years and counting) and are less and less about cancer and more and more about just being friends, which I am very proud of. This group of friends all know what going through cancer is like, even if the journey has been different for all of us. I found this very helpful, because obviously my non-affected friends could not understand (and I would not want them to). I worried that I turned into a nasty friend at the time, when a friend of mine was telling me about her visit to the dentist, I was thinking “I just don’t care about this, why do you think I want to hear about it?”. But then you want your friends to talk about normal stuff, and then you don’t. Most of the time I had no idea what I wanted or needed, and the weekly support group gave a structure to the week, with the odd bit of homework to think about and focus on.

2. I found just having a small thing to look forward to at the end of the working day was helpful. I had 3 months off work and was “strongly encouraged” to go back to work before I was ready (for instance I couldn’t bend down or stand for long and my commute and job were quite physical). I hated being at work. But what helped for me was planting some vegetable seeds at home, then when I got home, I pottered in the garden with small tasks and was able to look forward to this time in the day. For other people, it may be meeting a friend, or sewing, drawing or cooking. I would suggest anything other than watching TV, i.e. anything that takes a bit of focus and something practical.

3. I find writing about things helped to focus my mind and order my thoughts. Not while going through treatment, but afterwards. I knew at the time that once my treatment was over I would struggle mentally. It was as if my mind had boxed away all feelings to deal with later. It was a very definite feeling. Keeping a vague journal/weekly update helped to “file” the experiences and create a narrative which I still continue as a blog (Life after Cancer tips). It’s for me rather than anyone else, but if it helps other people, then I’m grateful.

4. In a similar vein to the above, I decided I would be open about my experiences to raise awareness of symptoms. If I had known that having night sweats was a sign of cancer, I may have mentioned it earlier to my doctor. I also had other symptoms that were troubling but my doctors put down to my age (39? Is that “an age?”) and the fact I had polycystic ovaries. I had abnormally long, heavy periods and a clear discharge for approximately a year, then as I was being tested prior to starting IVF treatment, the doctors “found something” during a routine scan. By giving talks to doctors, nurses and other patients, I was able to share my experiences and feel that something positive could come out of them. I know this is not something everyone would feel like doing, but plenty of my fellow sufferers have been proud to do such things. Try it, you may surprise yourself. Sharing experiences on blogs like these is a good way to do it anonymously if you prefer.

5. I sat down and really thought about what I would like to do in my life. I decided the thing I really wanted to see was baby turtles hatching from a nest. I planned a trip to Sri Lanka with my husband to do just that. In the past, I would never have considered such an exotic (and expensive) holiday but I loved EVERY second of it. I didn’t see turtles hatching that time, but I saw a turtle laying eggs and also leopards, elephants and all kinds of exotic things, smelled frangipani flowers for the first time, ate fantastic spicy food, learned about Buddhism and just had a whale of a time. I still wanted to see turtles hatching so later planned trips to Mexico, Turkey and St. Lucia with my mum. We did see them in the end, cried because it was so fantastic, and also had great holidays and experiences together. I’m not saying that it’s necessary to spend money to do what you want, but have a think about what would really make you happy. Actually, for my mum and I, it’s just spending time together and sharing a bottle of wine. Wildlife is a bonus. But tailor your thinking to you circumstances.

6. I joined a local community garden group to meet people who knew nothing about me and just to bring a bit of meaning to my weekends. I made some great friends and as a bonus we have created a beautiful garden for wildlife in a neglected part of Wandsworth. Anyone can visit and I get great pleasure from seeing people and their children/pets/other wildlife living in the space we created. As a bonus, I take photos and wrote a monthly newsletter and that increased my determination to improve my wildlife photography, so later took a local photography course.

7. Having had cancer has made me a stronger person but a person more open to new experiences and more open generally. I tell people about my experiences. This was something I couldn’t do at first. I couldn’t mention “womb cancer” without crying. But the first time I did it without crying felt like a step forward. Something that someone told me that I remember on a bad day is “you’re probably tired”, and that is often true. Be kind to yourself, accept it’s not the best day. Healing isn’t a straight line of “improvements”, you have good and bad days, ups and downs. Just like life.

I want to thank Kaz for her hard work in raising awareness and support for other ladies like me. There is so much to do, but by helping each other we will get there.

My story of womb cancer by J.C

2/8/2019

April 15th 2019, I attended my routine smear test, I had no symptoms present. The smear test was unusually painful and I bled afterwards and continued to bleed daily, albeit slightly, I thought to myself that maybe the test had triggered a menstrual bleed; god knows what I was thinking because I'm 54 and not bled for 3 years!!. Anyways my results came back normal, phew! I thought it sensible to book a doctor's appointment to get this bleed checked out .
Begining of May, I was fastracked to gynaecology for an ultrasound which did show abnormal thickness 28mm in 3 areas, I was then scheduled for biopsy by general anesthesia on 23rd May.

I was really looking forward to my family holiday in Turkey on 1st June and hoping my results would be back before but was advised it could take up to 2 weeks!! I had to make a decision to stay or go if the results were not ready.
Well after thinking it over I decided whatever the result, I will deal with it if need be whilst sunning it in Turkey so off we went and to be honest I still enjoyed my time and it shifted my focus. At the begining of my second week my Consultant rang me and asked if I had someone with me, at this point I knew it wasn't the news I was hoping for but it was the news I was expecting, He very calmly explained I had womb cancer and for me to continue my holiday and he would arrange an appointment with him when I returned.
My poor family were more upset than I was, I never really cried and felt surprisingly calm, maybe a protective response but I began to think logically,"I will be ok","it's a process I have to go through" "I will take everyday as it comes" and try not to "overthink". I said to everyone, wipe you faces we have our table booked and we will have a good night, And it was!!🥂After all, I finally had my long awaited answer and the ball was now rolling.

I returned home on June 15th but I was surprised that my operation date was not until July 15th - 4 very long weeks later, what a drag I just wanted this out of me pronto! So I kept myself busy doing my office job and staying positive doing meditation🧘, breath work, reading and Reiki which have been part of my everyday life for 20+ years and I really believe this has helped me through all of this along with my amazing supporting family and friends. I feel we are all even closer than ever #blessings

The operation went well and it looks like the cancer was well contained, I had my womb, ovaries and cervix removed, I was not in too much discomfort, and I went home the following day. The first few days I was uncomfortable with wind pain and tenderness but after the 4th day I started to feel pretty good, with no complications.
I am now 14 days post op and feeling more energetic daily. I will have my final appointment on 7th August to find out the hystology report and fingers crossed no further treatment will be necessary.
I feel really lucky, although changed in some way, I have always been a bit of a procrastinator but now I feel sure my bucket list will have lots of ticks on it

10th day post op, a gentle walk on the beach as the sun set 💜

My story of womb cancer by S.A

21/7/2019

Up until the beginning of this year I was a regular 38 year old woman. Me and my wife were in our own home with a mortgage and feeling like grown ups. We had been trying to start our own family too.
I had insane periods, like constant heavy bleeding for months. I always seemed to get a second wind when my wife was due on and it seemed that we had synced.
I also had severe PCOS and was diagnosed when I was 17. I had my first period at 12 years old and then nothing really other than maybe once a year until I was in my 30s.
These heavy periods made me go to the GP several times. They seemed apathetic/uneducated and just treated me several times with transexamic acid. Treating the symptoms and not the cause.

In February this year I was bleeding so badly I became delirious. They put me on a 10 day course of Noriday so I could have a smear. I was in agony as it felt like as much as it was nice not to bleed, I needed to for a release. I became severely anaemic.
The nice nurse tried for half an hour to do my smear test (I find them intensely painful) and my wonderful nurse who felt awful just said, enough is enough. And made sure from then on my GP took me seriously.

I saw a Consultant who said because I have PCOS, that I’m overweight and the fact that I haven’t had children that there was a chance I could have hyperplasia that could turn sinister.
She called it even without examining me. She scheduled a hysteroscopy, biopsy and smear test while I was under GA.
The procedure seemed to go ok; one thing I remember was the junior doctor coming over and comfortingly stroking my leg. I kinda knew it wasn’t fab news but blocked it out of my mind. She later told me that they had found discoloured bumps on my vulva so needed to do a biopsy there too.

I wait for my letter and then one Saturday morning my wife and I are excited to add some springtime touches to the garden when my appointment letter comes. I "what’s app" a photo of it to my mum and then google my new Consultants name.

Dr ....... Gynaecologist Oncology specialist.

I was devastated. My wife told me not to read to much into it but I knew she was worried too.
I walked to my Mums and began to cry, I walk in to find my Mum already crying as she had googled at the same time. I had just under a week until my appointment.
All that week I was worried about what I had; being as I had my womb, cervix and vulva checked. What if it was all 3? The next few days was a whirlwind of anxiety and tears from me and my family.

As the day of appointment date arrived my parents came with me, as my wife couldn’t get the day off work.
As I was called in, I met the new Consultant. He started to say my biopsy from my vulva was negative, and then proceeded to say that unfortunately they found grade one cancer of my womb. He explained that usually the treatment is a full hysterectomy.

He asked how I felt and explained that the menopause would be instant and hard to deal with without a natural progression. I was more interested in getting the cancer out. I left the room feeling a mix of devastation but also positive that I can handle everything and beat it.
I felt a sense of relief that I googled his name as being told you have cancer, getting allocated a Macmillan nurse and being given news of a life changing operation would have been awful if I was blindsided.

I had an MRI which showed it had gone to the outer part of my womb, but appeared to have been contained there.
I met yet another Consultant, this one was very reassuring. She explained it was her mission to bring awareness of womb cancer, and how she works physically as a surgeon one week and then does research the other week as she is a “womb cancer geek” her words.

I was scheduled for a hysterectomy, however the first attempt was a shambles, with lost paperwork and then me having a giant anaphylactic shock on the operating table despite never having allergies before. I came around from the anaesthetic with my uterus still intact.
My next attempt was scheduled for a week later. They/we decided it was in my best interest to have the operation rather than wait 6 weeks for an allergy profile.
It happened again, I went to theatre at 10am and woke up at 4pm. This time it was much more manageable as they knew what they were dealing with.

Now I’m in recovery. I had pelvic lymph nodes removed and dissection and a omentenctomy. Which thankfully both came back clear. My wounds are healing, I have huge swelly belly and tam rying to see whether my trunk and thigh swelling is the start of lymphedema.
I’m still in my journey as I’m about to start 3 rounds of brachytherapy to prevent it from returning.
Menopause is a bitch but something I’m learning to deal with. I’m just lucky that I have a wonderful family and support system. I’m also lucky to finally have the support of a nice nurse that was the only medical professional at the beginning that took me seriously..

My Story by M.C

25/6/2019

My story starts in 2016 when I started to get really irregular periods. I was 22 and went back to my GP time and time again to ask for help. I was bleeding between periods, after sex and would bleed so heavily it was like a tap, and I ended up in A&E. I kept being told it was my pill (mini pill cerelle) and that it would settle down. I'd been on the pill since 2014 and I knew something wasn't right.
Eventually, after around a year I was referred to gynaecology through the quick 2 week route. I had an ultrasound which showed my womb lining was thick (18mm) and looked very cystic. The consultant tried to do a hysteroscopy but I had a polyp blocking my cervix so he brought me in a few weeks later to have it done under general anathetic. He removed the polyp, put in a camera and took some biopsies. The 3 week wait was horrible but the results showed Complex Hyperplasia without Atypia. My consultant said to have the Mirena coil and that should reverse the cells and thin down the lining. This was inserted (OUCH!!!) and she said she would do a repeat hysteroscopy and biopsy in 6 months time.
Everything went smoothly and 6 months later she repeated the procedure. 3 weeks later the biopsies showed no Hyperplasia, woohoo!
Again she said she would do another in 6 months and if that was also clear, the Mirena could be removed and my partner and I could start trying for a baby (Dream come true!). The final results after another 6 months were also clear and I had approval for the Mirena to be removed. It came out in October 2018 and I was told to give my body a few months to adjust, but I shouldnt expect any problems. My partner and I were really happy!

Roll round to January this year. Apart from a breakthrough bleed, I'd had no bleeding at all. I called my GP and asked for an ultrasound. I was told no and that I should wait a few more months (I couldnt believe this!). I said I was trying to concieve and he immediatly said, 'Oh ok we'll refer you for an ultrasound then'. Typical! I waited 6 weeks and heard nothing so called the hospital and they said they hadn't recieved any referral for me.
Called my GP again and they re-sent it. I finally had one in March and it showed my lining was back up to around 17mm, very cystic and generally didnt look great. Again I was referred back to gynaecology down the 2 week path and saw a consultant a week later. He said I needed another Hysteroscopy and Biopsy which was done at the end of April this year, and also put a Mirena coil in.

This is where things get tricky. I'm at work when the letter arrives so my mum sends me a photo of it. I ask her to open it and to send me a photo of the actual letter. Instead she phones me and says, 'Just to warn you, its not good news'.
I read it and it comfirms the Complex Hyperplasia is back but its now Atypical. I then spot the C word. A patch looks particularly bad and they cant rule out endometrial carcinoma.
I'm given an appointment to see my consultant a few days later and he says they dont know for sure, but I'm on the cusp of it being cancer. He arranges an MRI and also refers me to Oncology.

Two days later I'm at my Oncology appointment and I'm totally shell shocked, as is my partner. Thank god my mum was there and took in what she was saying (Mum also used to be a nurse). I'm basically told they would only know 100% if they did a Hysterectomy (big no from me!). I desperatly want children so this wasnt an option for me.
She is treating me as a grade 1 carcinoma and prescribes me Provera on top of the Mirena. She tells me she'll do a hysteroscopy and biopsy in 3 months time to see if its working.
In May I had my MRI which showed it hadnt spread (Yay!) and had blood tests which were also fine. My hysteroscopy and biopsy is booked on 5th August and Im seeing my Oncologst this Thursday.

This isn't my finished story, its just the beginning really! Didnt expect to experience this at my age (25 now) but thats life I suppose!

My story of womb cancer by Cathy Griffiths

22/6/2019

My name is Cathy. I was diagnosed 2 years ago at the age of 53 with grade 1b stage 2 womb cancer that had spread to my cervix.
I was post menapausal & it started with a blob of blood in the loo now & then to everytime I pee'd.
Also no energy, lethargy etc. Went docs in 2016 & had a scan to check the bladder. Everything was fine. But the blob of blood in the loo continued so i stupidly thought it was due to the menopause!

In May 2017 i had a 3 week bleed & thought it must be a few eggs left in my ovaries?
My friend told me to go back the docs which i did. She sent me to have an ultrasound where she said i had a polyp. So i had to go in to have it removed & have a biopsy on it.
I still never thought about cancer. Then 2 weeks later i was told it was cancer.

I had a total hysterectomy a week after that. Then 6 weeks after that i had 5 weeks radiotherapy & 1 session of brachytherapy.
I still feel so tired most of the time now! Its left me with an urgent bladder. At the moment i've been off work for the past 3 months with vulval pain, never had pain like it before, plus stomach cramps, constipation etc.

I had a ct scan but no signs of "C" but hopefully i will be back to work soon.

The worst part for me pain wise, was after the operation having the polyp removed. I wasn't expecting labour like cramps every 5 mins for hours the next morning when i got home. & the pain/wind from the hysterectomy aswell.

The radiotherapy was painless but the fatigue was something else. But I'm here & feel extremely fortunate as I know some people aren't in the same situation!!
God bless them.
Good luck fellow girlies with whatever stage you're at??
Xx

8 years on.

11/4/2019

'On 11 th April 2011 I did something that I never thought I would ever need to do - I set up a cancer support organisation.
I had never expected to ever get diagnosed with cancer - I don't think anyone ever does.
So when I went looking for specific womb cancer support I couldn't find any.
I was living on a small island off the west coast of Scotland and at the time I was the only womb cancer patient. We had a small cancer support group that met once a month but it was all breast cancer ladies and was more of a social get together rathar than somewhere to go for information. I desperatly wanted to talk to other women who had gone through the same as me - I wanted advice and information and didn't know where to go.
So I did what many do and turned to the internet.

Finding out that womb cancer was the most common gynaecological cancer, I was shocked to find that there was so little support out there.
I found a Facebook group that had been set up by some American women who had been diagnosed and discovered that there were a few UK women in there also.
One thing led to another and on 11th April 2011 - Womb Cancer Support UK came into being.

Since those very early days of being a Facebook page offering support to other women we have grown to be a national not for profit organisation with a private support group of over 250 women and almost 3,500 followers on our main FB page. Our website gets over 1,000 unique visitors a week and we hear from women every week who have been diagnosed with a cancer that most of them have never heard of.

Which brings me to the lack of awareness of womb cancer. it was very evident back in 2011 when we began and it is still pretty much the same now, despite the fact that it is the most common of the 5 gynaecological cancers.
Yes, you heard me right - there are actually 5 gynaecological cancers yet sadly most women have only heard about ovarian & cervical. Womb, Vaginal and Vulval cancer hardly ever get a mention - mostly down to the fact as I see it, that not many women actually die as a result of these cancers so we don't seem to warrant the same level of attention.

I know some people won't agree with me but after running WCSUK for the past 8 years, all the while living with the long term side effects of the treatment i endured in 2010 I can tell you that the lack of media coverage and awareness for womb cancer is shocking.
I hear from women every week who say they had never heard of womb cancer before being diagnosed, some of them have been nurses too!!!

WCSUK is only a very small organisation. I work from my laptop on the kitchen table. I don't get paid for doing this - I do it because I can see that there is a desperate need, not only for support for those who have been diagnosed but for more awareness.
Thanks to some of the lovely ladies who are part of our private support group, we have managed to get womb cancer awareness leaflets in GP surgeries across the UK.

Sit in any surgery waiting room and look around at the leaflets on display. You will see ones for breast cancer, bowel cancer, lung cancer, cervical cancer etc but, unless one of our ladies has been there before you, you won't find any information about womb cancer - the most common gynaecological cancer.

So today we will mark the occasion with a bit of fun over on our FB page and then tomorrow we will return to trying to raise as much awareness as we can.

We may not be dying in the same numbers as those with other cancers but sometimes living with the long term side efects of having been diagnosed with womb cancer can be life changing.

Kaz

My womb cancer story by Dafina Malovska

27/2/2019

Everyone has a story, and this is mine. My name is Dafina and I’m 39. Four years ago, I was living a normal life and doing all the normal things that young people do; working on my career, long hours in the office, travelling, making friends and generally enjoying life.
But while I was planning my future, I didn’t know that my life was already in danger. I had no idea I was carrying a growing tumour, eventually weighing 500g.

In July 2014 I started becoming very bloated, which was unusual for me. I saw my GP almost 4 months in a row, but she didn’t touch or examine my abdomen even once and instead sent me to see a gastroenterologist to have my stomach checked. The gastroenterologist didn’t discover anything either and I tried to continue with my life as normal but with the constant bloating.

Not long after I went on a holiday to California. As most of us do, I love taking photos when I travel. But this time I started noticing that I looked very different in the photos, I looked drained and exhausted. I even asked the friend I was traveling with not to take any photos of me because I was so worried about the way I was looking. I even started avoiding the mirrors in bathrooms. I started wondering why. “Am I getting older?”. “What is going on with me?”. While I was still on this holiday I bled between my periods; because this had never happened to me before I put it down to the change of climate and travelling.

But the month after my holiday in California I again started bleeding between my periods and then I knew that something was not right. I went to see another GP who referred me to a Gynaecologist.

However, in the next few days I had to fly to Macedonia to surprise my sister for her birthday and I was still waiting for the gynaecologist appointment in London. As soon as I arrived in Macedonia, I booked to see a private gynaecologist. The gynaecologist there did a proper check-up including a transvaginal ultrasound (complete pelvic examination) and quickly discovered that I had a huge tumour on my uterus, 14cm long. She advised me to have it removed immediately.

I was booked in for an operation in 4 days’ time. I was terrified that I would need to have a big operation and the only thing that gave me the strength to proceed with it was that I wanted to protect my uterus so I could still have children one day.

After the operation was done, I woke up in intensive care and immediately had to do an X-Ray on my chest which nobody explained why at the time. After the X-ray I was brought to my recovery room in the hospital where my family was waiting. I was looking forward to seeing them but as soon as I entered the room, I could see they looked so concerned and worried. When I asked them why, my mum told me that they were waiting for the results of the tests which alarmed me. A few minutes later the surgeon entered the room and told me the life changing news. “You have cancer and it has spread to your ovaries”. I was devastated and so afraid of what I would hear next...
”Will I survive or do I have just a few days to live?”

The surgeon advised me that I must go back into surgery that very evening to remove my uterus and my ovaries, actually to have a total hysterectomy, in order to save my life.
WOW! That was the second item of shocking news that day! This sentence meant the plans for my future, of having my own big family one day, had completely disappeared. I discussed all the options with the surgeon and asked if I could freeze my eggs but as I had a very rare type of cancer called Leiomyosarcoma which was oestrogen receptive, this option was out of the question.

Since that day I’m not able to have my own children and after the operation I was put into immediate surgical menopause.
It’s been 4 years since then and every day I have to deal with the consequences of early menopause, such as: hot flushes, night sweats, mood swings, vaginal dryness and osteopenia (lower bone density). I am only 39!

But I am happy that I am still alive and I can share my story with you. What happened to me I wouldn’t want to happen to anyone else and especially as this can be prevented simply if detected earlier. Sadly, more and more often we hear that women and girls in the UK are diagnosed too late with some type of Gynaecological cancer.

Every year in the UK over 21,000 women are diagnosed with one of the 5 gynaecological cancers such as: Womb (9,300), Ovarian (7,300), Cervical (3,000), Vaginal (240) & Vulval (1,300).

At the moment in the UK the only available test for our reproductive health is the Smear test which is very important, but this test detects the likelihood of only 1 type of gynaecological cancer which is cervical cancer. 3,000 women are diagnosed every year with cervical cancer but over 18,000 are diagnosed with the other 4 types of cancers. I wonder how many of these women were diagnosed too late?

I had my smear test which showed that everything was normal a few months before my diagnosis of womb cancer.
If I had a chance to see a Gynaecologist at least once in the previous years and had a full check-up such as a transvaginal ultrasound my tumour, which grew to 14cm long and weighed 500g, would have been discovered much earlier and I would have had a chance to remove it before it spread to my other organs.

Currently in the UK, going to a Gynaecologist is not normal practice and we don’t even talk about it. But yearly gynaecological check-ups are a very normal thing in lots of countries in Europe and worldwide.
If this also becomes normal policy in the UK it will save many lives by enabling the early diagnoses of gynaecological cancers that have no screening programmes and also pick up a range of conditions and complications that significantly affect a women’s quality of life (e.g. endometriosis and fibroids).

Annual gynaecological check-ups will give every woman a chance to freely discuss with a specialist the issues important to us all; periods, sex, contraception, fertility, pregnancy,
menopause, HRT and osteoporosis, which will hopefully break the taboo around these subjects.

To make this happen I started a petition for Yearly Gynaecological Check Ups in the UK for all women from adolescence.

If you would like to read and support my petition, please click the link below.
Thank you very much.

chng.it/GVtLGdfSbr