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September is Womb Cancer Awareness Month

1/9/2019

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​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. 
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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.

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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.

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Importance of female friendship by Margaret Chandler

18/8/2019

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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!
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Womb Cancer and I - by Reija Kime

11/8/2019

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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/.
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Life after Cancer by Kelly Kolkiewicz

4/8/2019

1 Comment

 


“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.

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​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.

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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.
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My story of womb cancer by J.C

2/8/2019

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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 

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10th day post op, a gentle walk on the beach as the sun set 💜
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My story of womb cancer by S.A

21/7/2019

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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.. 

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My Story by M.C

25/6/2019

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​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!

​
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My story of womb cancer by Cathy Griffiths

22/6/2019

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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
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8 years on.

11/4/2019

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'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 
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My womb cancer story by Dafina Malovska

27/2/2019

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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.


Picture

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

chng.it/GVtLGdfSbr
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Raising awareness about womb cancer with GP's.

23/12/2018

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l
A few weeks ago I was contacted by C the Signs and asked if we would like to write an article for them. Their aim is to help GP's and other HCP's identify early patients at risk of cancer.

Now as many of you will know, a lot of GP's are still under this mis-conception that womb cancer only affects older, mainly post menopausal women. So we were very pleased to be offered the chance to write an article for their newsletter that would potentially be seen my many GP's around the UK.

Anything that helps raise awareness of womb cancer is important so you can read the article here

​Please let me know what you think and please also share the link around. It all helps to raise awareness.

​Kaz 
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Time to switch off and tune out.

1/10/2018

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This is probably the hardest blog post that I have had to write. It’s taken me a long time to “put pen to paper” as they say but I’ve finally done it.  It’s taken a lot of soul searching for me to come to this decision.

When I started WCSUK back in April 2011 there were 2 things that I did not expect. One was for there still to be a need over 7 years later for an organisation like ours to be doing the awareness raising for the most common gynae cancer and the second was for my health to be as bad as it currently is.
I have spent virtually every day since then working to raise awareness of a cancer that many women then and now have barely heard of. WCSUK started initially as a support group – and that was what it was only ever intended to be. However, it very soon became obvious that there was a total lack of awareness around this cancer so it became one of our twin aims – to support women who have been diagnosed and to raise awareness.
However, due to my deteoriating health the time has come for me to rethink what I do. I can no longer cope with the amount of work I put in to running WCSUK. Most of what I do goes unseen; the women in the private support group and those who follow us on Facebook only see a small bit of the work I do in trying to raise awareness of womb cancer. I do it because I believe it’s the right thing to do, not because I am looking for a slap on the back or to boost my ego (which I have been accused of in the past)

So, as this year’s September awareness campaign has come to an end, I shall be cutting back on the amount of awareness raising that WCSUK does. That doesn’t mean that it will stop altogether; it just means that I will be taking a step back from my laptop and concentrating on me for a change.
Because of my health issues that arose as a result of my cancer treatment over 8 years ago I have been unable to do all the things that I wanted to do in order to raise awareness. I’ve not been able to attend conferences and events that I have been invited to for a start. These opportunities have arisen many times but I have always had to turn them down and that is hard for me because I feel frustrated that  I can’t do more to further our cause and get womb cancer the attention it needs.

There are some wonderful ladies who are part of WCSUK who are doing lots of great awareness raising and I will always be there to support them and what they do. I just wish that WCSUK could have done so much more to give womb cancer the voice it deserves. Being such a tiny organisation means that our voice is very often over-looked or ignored, however loud we shout! I wanted womb cancer to have as high a profile as breast or cervical cancer but it seems that not enough people care as much about womb cancer as they do other cancers. I keep hearing that there needs to be more awareness of womb cancer but don’t see people actually do anything, apart from a few committed individuals. I can’t fight it anymore – womb cancer is overlooked time and again and the good work that we as a group of women who have been diagnosed with womb cancer  are doing is not being recognised properly.

I have struggled this month to do all that I had planned due to my health situation and other personal reasons; I have been let down by several people who had promised me guest blog posts for the website and I have also had to face criticism from some people over various issues, ranging from the wording on our leaflets to the length of time I take to answer emails or FB messages. I’ve been told that the #PeachTeaPacks were not very good and I have also  been told that I should stop calling September “womb cancer awareness month” and work with others as part of “gynaecological awareness month”. Anyone who knows me will know how passionate I am about womb cancer having a month of its own and getting the recognition it deserves.

 I don’t need this. I don’t need the stress and the hassle. I spend around 6-8 hours a day online doing womb cancer related work and I am burnt out. I don’t get paid to do any of this, I do it because I care.
My health issues mean that my quality of life is deteriorating and I need a break. It’s as simple as that. The private support group will remain as will the main FB page and the website – basically the only thing that will change is that I won’t be tied to my laptop for hours on end every day.

Finally I want to say a huge thank you to those ladies who have stepped up to the mark this month and worked their socks off to raise awareness. You know who you are, and I am so grateful for everything you have done for the cause. WCSUK has never been about me – it’d about the women who are part of it and who make it what it is. Thank you to all of you and also to those people who support the work that WCSUK is doing - you know who you are too and I am forever grateful for all the support you have shown me and the organisation over the past 7+ years.

So as September is now over, my laptop is being disconnected and I am taking some “ME TIME”. Any social media posts that you see will be scheduled ones – if you need to contact me then please do so via the website. I will check my emails a couple of times a week.

As a famous movie star said "I'll be back" - I'm just not sure when!!!

​Kaz 
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#GiveWombCancerAVoice

28/9/2018

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​
Someone asked me recently why I still talk about womb cancer all the time. After all, they reasoned, I no longer have it and its over 8 years since I was diagnosed so why don’t I just forget about it and get on with my life.

The simple answer if – I can’t forget about it. I am living with the long term consequences of treatment and every day when I wake up and struggle to put my lymphoedema compression stockings on it is a reminder, as if I needed one, that womb cancer  came into my life suddenly, without warning and ruined my life. Womb cancer will always be a part of my life.

I also want to make sure, through the work I do with Womb Cancer Support UK that other women are not left feeling alone and scared when they hear the words “Sorry, but you have cancer” Through the support WCSUK offers in our private Facebook group, we make sure that no woman faces this alone.

But above all, I want to make sure that all women, of every age, shape and size know about womb cancer. It’s the most common of the gynaecological cancers and the fourth most common cancer to affect women so why don’t they know about it? Why are women still being diagnosed with a cancer they have never heard of, just like I was at the end of 2009?

I’m not the only womb cancer patient turned awareness advocate – there are more and more of us willing to stand up and share our story to help raise awareness. In the absence of a national awareness campaign, we have to if we want women to know and be aware of womb cancer.
​
Together, we are stronger and together we will #GiveWombCancerAVoice.
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Physiotherapy advice from Leah Dalby

26/9/2018

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Awareness of cancer, is an almost everyday experience for me – usually, as a physio, but sometimes as friend or family member, desperately hoping for knowledgeable and kind care for someone I love and occasionally, terrifyingly, wondering if it’s my turn.
 
I hope this will be useful and is written from my experience as a 52 year old woman, who loves being a physio., mostly working with people who have or have had cancer. I am enormously indebted to the people who have trusted me with their precious bodies and minds and who have taught me so much.
 
Abdominal surgery, radiotherapy & chemo can have a massive impact on the person with a cancer diagnosis and also on those who love and care for them.
 
It’s common for people to describe themselves as ‘disfigured,” or “unattractive,” be wary of touching or looking at their tummy,** not always have a full understanding of what exactly has been removed, replaced or affected and unsure whether to hope I can help or not.
 
Fascia is a connective tissue just under the skin. Around the muscles, in between the muscles and amongst our organs. Around nerves, blood vessels and lymphatics, becoming periostium, the outer layer of our bones – it’s almost everywhere in the body! It embraces the muscles so they can work efficiently and when we move, structures can slip over one another smoothly.
 
When we have surgery, an injury or radiotherapy, the fascia can be scarred and get stuck – you may know someone who has had painful adhesions, someone with altered bowel movements, tightness in their legs, has developed a “bad back” or even tight neck/shoulders after abdominal surgery These things sometimes happen because the fascia is an extensive system, throughout the body and if it gets stuck in one place, other parts of the body will have to compensate. A jam on the motorway can have impact in other parts of the country!
 
“Hands on,” treatment can make an enormous difference to the feel and look of scars. Importantly for some people, it can be healing to have someone interested in their scar and keen to work with it. Not repulsed or scared by the changes.
 
It interests me to see how often the person’s “heart” seems to heal as their body responds to treatment and their outlook stretches: optimism, hope and dreams start to re-emerge. Bowel function and sleeping may improve and other parts of the body restricted by the scar tissue move more freely.
 
As I am confident to treat the person’s body, that can improve confidence at home, either with sexual or sensuous expression or with vigorous “messing about” with children or pets.
 
Intimacy encompasses a broad spectrum and for some people, using a pH balanced vaginal lubricant maybe useful (I am not allowed to recommend brands as a physio, but I hear that Yes, Yes, Yes is popular + apparently safe for oral sex)
 
Sam Evans, who I “met” on Twitter, shared the Jo Divine health brochure  with me which some people have found useful – and they open up the conversation, if the person wants to have it! I’m frequently shocked to discover that I’m the first health care person to ask…
 
I have known several people who have found a silky playsuit can be useful as it can allow good access, but also some covering of the body. Pretty lingerie isn’t a hospital accessory, either.
 
If your surgery has not been via the abdomen, but all internal, you may still have scarring that would benefit from treatment and some Women’s Health physios will be able to do this for you. Radiotherapy can also cause enduring changes in the tissues which may benefit from treatment. Sam and others with expert knowledge of sex toys may be able to advise you better than me on which vibrators etc may be most useful (and maybe fun,) for you.
 
Exercise (movement and stretching), breathing well, eating and sleeping well and relaxing are important, but maybe not as important as choosing what it is you really want.
 
Looking after the pelvic floor muscles is really important – they are the bottom of our pelvic basket and can work in harmony with the abdominal muscles. There are lots of adverts for incontinence pads, but please, if you have any leaking of urine or faeces, when you are laughing, coughing, sneezing, bouncing etc get your GP to refer you to a Women’s Health physio to teach you how to do these and check that you are doing them effectively. (When you are passionate about Women’s Health issues, you just want everyone to be continent and having the best sex life they want so it’s not an embarrassing topic for us)
 
Over the years, I have found that people who have had more than one episode of surgery, had radiotherapy, had lymph nodes removed or have had wounds that are slow to heal or have been infected are more likely to need “hands on “ treatment, so if you have previously had say a C-section or your appendix removed, or a joint replacement or  breast or heart surgery, that may be relevant to you – but not necessarily. I write this to share my experience, not to keep anyone awake with worry.

Lastly, I see lots of very vulnerable and sometimes smelly scars under people’s tummies – we sit so much in our culture, it’s not easy to see the area and it may be numb, so please take care with dabbing dry after washing and check for bites with a mirror.
 
Please feel free to email me at www.leahthephysio.co.uk if you think I can help or you can teach me something. Thank you.

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Read all about it - unless it's about womb cancer!

24/9/2018

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​
Knowing that the printed media, especially magazines, work months in advance I have been trying since the beginning of this year to get some publicity for womb cancer.
I have contacted various independent journalists and magazine and newspapers, many of who have not even bothered to reply to my emails. I have women who are willing to talk about their diagnosis yet still it is so hard to get any publicity for womb cancer.

It sadly seems that womb cancer doesn’t have the same sort of media friendly attraction as other cancers. Why don’t all cancers get the same level of awareness?
I told one journalist that we had lost 3 #PeachSisters to womb cancer at the beginning of the year and she asked me if the families would be willing to talk to her for a story.  I told her that I had little contact with the families and that it wasn’t my place to ask them.  She said it was a pity as someone dying from cancer was always a “good story”.
​
Sadly, the dead can’t talk to the media and share their story which is why we are working hard to raise awareness and do it on their behalf.

We have lost 5 #PeachSisters so far this year to womb cancer – 5 women who were Wives, Mothers, Daughters, Sisters etc.
 
It is because of them and all the others we have lost over the 7+ years since we started, that we do what we do here at WCSUK.

We will continue to shout from the rooftops about womb cancer because we care and because we want to see change.
We want women to be listened to and not have their symptoms ignored.
We want women to get the help and support they need after diagnosis.
​We want women of all ages, shapes and sizes to know about womb cancer.
We are here to #GiveWombCancerAVoice
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