Category: - Womb Cancer Support UK

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.

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!

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

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

Reaching the 5 year mark - by Margaret Chandler

18/5/2018

Margaret is a #PeachSister who has written guest posts for us in the past and today she shares her latest news with us.

"Earlier this week I was given the news that, as I'd passed the 5 year mark post-womb cancer diagnosis, I no longer needed to attend for hospital check ups and was being discharged!
5 year! - the landmark I didn't dare dream of reaching in the dark,early days after diagnosis, and one I found overwhelming when it finally did arrive.
What I found most overwhelming was the realisation of not only how stressful the past 5 years have been, but also how much I had evolved and changed personally throughout that period.
My consultant mentioned the psychological term 'Post- Traumatic Growth' on Monday, one first coined in the 1990's by R. Tedeschi. After briefly researching the term, I found it fitted in perfectly with what I'd experienced as a womb cancer patient.
Being diagnosed with womb cancer was possibly one of the most traumatic things to happen in my life. I'd never heard of the disease and thought I was at low risk of developing female cancers as I had never missed a smear test or mammogram. I also lived a fit and healthy lifestyle.
At diagnosis I was told I would need a total hysterectomy 4 weeks later and the operation had already been booked. Cancer to my knowledge at that time was a certain death sentence and in my mind I wouldn't be here to celebrate Christmas. The most traumatic thought was leaving my son, who had been born after 11 years of infertility treatment (although he would turn round now and call me a complete melt)
I found the physical recovery after surgery reasonably straight forward, the psychological aspect less so. This was exacerbated by the fact I was going through a surgical menopause with all its hormonal highs and lows.
A long recovery gave me chance to reflect and recognise changes I needed to make in my life, even though I was desperate at times to get back to who I used to be. I realised I'd always been a people pleaser, but now it was imperative for my future health and wellbeing to start setting firm boundaries and to live life on my own terms. I'd spent a lifetime enabling others to live their best life, now it was my turn.
So what has the past 5 years taught me?
I see the lessons as a series of paradoxes:
I have learned to say No more often, but also to say Yes to opportunities that may have passed me by before.
I am more understanding, kind and compassionate to some people, but have a distinct lack of tolerance when others complain about stuff and nonsense.
I live life more slowly and intentionally but realise time on this earth is limited and passing quickly so don't want to waste any.
I live with less fear which gives rise to experiencing more joy. Life is lived in sharp focus and beauty is found close to home, not necessarily thousands of miles away.
I no longer have a 5 year plan. life is right here, right now.
I am mindful of how and with whom I spend my life and the biggest paradox is that after surgery, no matter how many sit ups I perform I'm never going to have a flat belly, and I'm ok with that!!
I would never have chosen a womb cancer diagnosis, but through the trauma I have, to paraphrase Tedeschi, developed a new understanding of myself, the world I live in and a better understanding of how to live life.
This is Post-Traumatic Growth!
I hope you'll join me in an extra large gin!
Cheers!"

If you would like to write a guest blog post for us then please get in touch using the contact form.

Kaz xx

The hidden impact of womb cancer by Lydia Brain

23/9/2017

It’s September, which to many is just the start of autumn, but it is also womb cancer awareness month. For me this is a time to look back and reflect on how womb cancer has affected my life.

Last November, at 24 years old, I was diagnosed with an extremely rare uterine tumour, myofibroblastoma. From that day my life changed completely, as well as my body, my attitude and my outlook. It’s been a long and tiring old journey, that for the most part has been downhill, and unfortunately I’m no way near finished. Having any cancer diagnosis changes you forever and leaves you with psychological, emotional and physical after effects, and there is often little guidance and support on how to deal with these.

First of all a cancer diagnosis immediately throws your life into disarray. Everything else takes a step back and your health becomes your number one priority, your only priority. Everything else blurs into the background. Your social life, relationships, and career all have to fit around your new cancer schedule and into your altered brain space (of which your cancer and cancer related worries take up around 99.9%).

Even before treatment womb cancer has a large affect on your social life and relationships. I personally had very unpredictable and heavy bleeding for months before and after diagnosis. Living in the largest sanitary towels, sometimes ‘just in case’ makes feeling and looking good rather difficult, and wearing skirts a big no no! It also made sex rather challenging, and I would sometimes be bleeding too heavily for weeks on end to even consider the possibility. All relationship mystique goes straight out of the window when you bleed constantly and heavily. Having to ask my boyfriend at the time to help me escape a public place and walk behind me to try and hide my big red patch on my trousers wasn’t exactly my sexiest moment. Heavy bleeding also made exercising rather difficult, there are very few classes you can do in womb cancer friendly clothes. So during bouts of bleeding I would either have to give it a miss completely, or exercise at home (factoring in several runs to the bathroom and possibly a few outfit changes).

At the point of diagnosis, being only 24, most of my thoughts and worries were occupied by the looming possibility of infertility, and the decision I would have to make. Whether or not to give up my chances of ever carrying a child for the chance of my tumour spreading and possibly losing my life. To some the answer to this problem seems obvious, and I know many people didn’t understand my reluctance towards a hysterectomy. The importance of fertility varies hugely from person to person but I know for me, losing my fertility was my worst nightmare. I was also very aware of the possibility of regret later in life if the wrong decision was made, and how very devastating that could be. Womb cancer put a very grown up decision on my young head, and one of the largest effects it had on me was stealing my youthful freedom and carefreeness. I was forced to consider and plan out my entire life in those few weeks, when before I had merrily floated along taking life as it came, like all young people should!

My wonderful consultant and I did our best to try and save my fertility, and for three months I tried a hormone treatment, Zoladex, in hope it would shrink my tumour. I was the first patient that we know of to try and treat my type of tumour in this way, and unfortunately it started to grow even faster than before. In the end there was no choice and I had a total hysterectomy. But, at least I hadn’t had a choice in the matter. I can have no regrets as the weight of making that decision was lifted from my shoulders.
Even though my hysterectomy got rid of my cancer (and hopefully it won’t return). It brought a new pain to my life, and one that will never leave. At 25 infertility is easily ignored, but in 10 years time when all of my friends are starting their families I’m sure it will hit me like a brick wall.

Womb cancer and everything it brings leaves a mental scar, I’ve suffered with bouts of depression and anxiety (including the notorious scanxiety). I can liken post treatment life to films where characters are on the run from the police. They spend their whole life looking over their shoulder, never truly able to relax or let their guard down. Always on high alert. In the back of my mind is the possibility that my cancer will return, with the knowledge that this time it would be a whole lot worse than before. Every pain and niggle is a possible new tumour, every symptom and side effect rings alarm bells. I’m yet to have my first three month scan post op, but I already know the feeling. The worry and the anxiety that there will be bad news. There is usually bad news.

That’s the thing I’ve learnt about womb cancer, always be prepared for the worst, because your plans change at the drop of hat. Every single appointment I’ve had, I have come out in a different situation and with a different plan than before I went in. I can’t count the amount of times people have asked how an appointment went with questions that are no longer relevant. Everything I had planned for and decided on has had to go out of the window. After just about getting your head around your treatment and life plan, you have to start again. This unpredictability brings anxiety, and makes it hard to look forward. It’s a never-ending rollercoaster and you can’t see what lies ahead.

Womb cancer has affected me in countless ways. The hidden psychological effects have been the hardest to deal with and are often under-acknowledged, underappreciated and under-supported. Post treatment it is often assumed that you are ‘all better now’ and your life is back to normal. The hidden emotional impact from womb cancer will last my lifetime and the effects it has had on my body can never be repaired. Increased awareness and support can and will improve life for women like me.

You can follow Lydia on her website https://youngwildandfibroblastic.com/

My story of a womb cancer diagnosis by C.M

4/6/2017

Another Peach Sister shares her story to help raise awareness

"The before.
Every woman I know complains about her periods – they are painful, heavy, go on for ages etc. Having periods suck – it’s the worst thing about being a woman. BUT pretty much every woman has them. So when you have a period – you don’t know what is right and what you should be concerned about. The internet and doctors tell you that “about an eggcup” is normal – but how do you measure that? Is that an eggcup a day? A whole period? A lifetime?
Anyway, I’ve always had difficult periods. Incredibly painful up until I was 20. Then they vanished and then they came back non-stop. My “floods” began back in 2012 – I was on a canal boat with the husband and two friends and it was horrific. I was using numerous pads and still having to change every 20 minutes or so. I bled through all the bedding and all of my clothes. Plus the pain! I bled so badly that I stood up and it gushed out and ran down my legs and onto my shoes. I thought I was dying!
I went to a GP and he was concerned I’d had a miscarriage and once I’d assured him I definitely wasn’t pregnant he gave me some progesterone tablets and told me that would stop it. Which it did – for the week I was taking them for and then it all started up again so I went to see my normal GP (she’s wonderful!) and I was prescribed some clotting medicine – this did the trick . So this is how I survived – whenever I started to bleed heavily, I would take tranexamic acid for four days and my periods would stop. For the first two days it was like carnage but then slowly became manageable.

Never-ending.
After my second big flood – I arranged to see a gynaecologist. I had been seeing one due to PCOS but we’d fallen out after she’d fat shamed me so I needed to find a new one. My GP had heard of one lady in particular so I used my BUPA cover and went to see her privately. By this time I was bleeding continuously – not heavily but enough I needed to wear a pad every day and change it a couple of times.
I got my appointment with the consultant gynaecologist and we discussed my PCOS and my bleeding. She wasn’t overly concerned about the PCOS – but she was concerned about the fact I was bleeding – she sent me off for blood tests and a scan. The consultant thought I might have a polyp or a fibroid but she wanted to wait for the blood & scan results. Neither of these showed up anything to be concerned about and by the time I went back to see her, the bleeding had stopped. She thought it was likely I’d had a polyp and that had passed – which would have caused the heavy bleeding. She told me to come back if anything started up again and she would arrange for me to have a hysteroscopy .
So this is how I managed for the next 18 months – taking the tranexamic acid when things got too much and wearing pads when the bleeding didn’t stop.

The summer of blood
I didn’t have any more major bleeds and in fact between March and June 2014, I had pretty normal periods. So in July when I began to bleed, I didn’t worry. I didn’t even have any tranexamic acid in the house. The flood began at work – I was in a meeting and I stood up and I felt the gush. This was how my summer of blood began.
I took tranexamic acid – it didn’t work. I took progesterone – this slowed it down but didn’t stop it or stop the pain and also drove me insane! I would cry without reason, I hurt everywhere, I felt sick all of time. I couldn’t sleep. Horrible. My GP signed me off for two weeks. At the end of the two weeks I went back to my gynaecologist – she ordered a scan and bloods. This time, the scan showed something – the radiologist couldn’t say it was a polyp but she suggested a look was required.

Hello hospital my old friend
On 20 August 2014 – I went and had a hysteroscopy. My second ever general anesthetic and it went fine – was a great experience in fact. My gynea couldn’t find a polyp – she said the lining was thick and “fleshy” but she cleared it all away and sent it off to tested. I was in and out of hospital (private) within an evening. The next day, I felt wonderful! The best I’d felt in ages. No bleeding, no pain. Amazing!
By the Saturday (I had the op in the evening of the Wednesday), I felt awful – really bad cramps, bleeding, feverish. I just put the cramps down to the womb going back to its normal size and the bleeding being because I’d been scraped out. And the fever I didn’t really recognise as such. The husband was away for the night and I spent it feverishly dreaming slugs were climbing all over the cats’ bowls. I was also freezing. I remember putting loads of layers on and using the hairdryer to warm my socks and my feet. Yet still I didn’t recognise I was sick. Not until 7am on the Sunday morning when I stood sobbing in the bathroom feeling so terrible and a memory flashed into my head – I hadn’t felt this bad since I’d gotten my post op infection after I’d had my tonsils out. THEN I knew . An early morning phone call to NHS direct, a trip to A&E with my wonderful friend I’d dragged out of bed and two lots of antibiotics later, I was back home – feeling worse. The doctor I’d seen in A&E had said if I felt worse or felt sick to come back in.
To cut a long story short – I did have an infection. I was treated ridiculously poorly by every department I encountered on my return visit to A&E and I was hospitalised for three days due to the infection. But this was it yes? I had been unwell enough? Ha! No quite.
The worst is yet to come
Two weeks after I’d had my infection, I was due to go back to work. But finally – the results of my biopsy were back. I walked into my gynea’s office thinking I was going to be told it was nothing that losing some weight wouldn’t solve (answer to EVERYTHING when you’re a fat girl) and walked out with a potential cancer diagnosis. Basically my results had been reviewed by two pathologists and both were unsure – including one who is one of the leading pathologists in the UK. It was likely the fact I’d been taking huge amounts of progesterone had skewed my results but to be better safe than sorry, I was going back to have another biopsy but under urgent care at my local NHS hospital.

The unknown journey
The biggest difference I noticed between NHS and private care is not the level or standard of care you get but how much you are told what’s happening. With private – I guess because you are a paying customer – you are told “you are going to have a scan for x reason.” “These blood tests are to tell us y”. That doesn’t happen with the NHS. I got back from holiday with my next operation already booked in – with lots of demands about how to ensure I have it. My first appointment with the gynaecologist consultant involved me having to have an internal scan without warning (and it being discussed in the middle of the waiting room with me!). I wasn’t told much else. I read the results of the scan because I was given the paperwork and had to walk back to where my consultant was. It read “womb lining <5mm thick (measuring 25mm) looks hyperplasia in appearance.” whatever that meant. I should have known then that I was going to spend a lot of time asking “why?” and being on the defensive. It’s probably easier if I bullet point what happened next:
* I was booked in for my operation – and told I would need to stay the night as they would put me on IV antibiotics to prevent me getting another infection. But only my consultant and I appeared to know this! I spent my whole time in recovery explaining “I get post op infections; I need to stay in for antibiotics”.
* I was asked by the ward sister if I’d had an operation in last six months, three hours after coming out of surgery!
* I kept receiving phone calls about scans and MRIs but had no idea what these were for and why. In fact my MRI and CT scan were booked for the same time and if I hadn’t enquired about why I wouldn’t have had one of them.
* I wasn’t told I would need to have a cannula in for both scans – until the day. I then had to endure someone trying to get them in!
* I was fat shamed 10 minutes before my operation by the anaesthetist – who asked me what I was doing about my weight! She then got shirty that I was abrupt with her “you took offence when none was intended” “no, you assumed I would just take it when you questioned me about my weight when it has nothing to do with why I am here”.
* I was told I needed to have my results discussed at St Thomas’ and was given an appointment time. Two hours before that appointment it was cancelled because “as you don’t have cancer, then you don’t need to see us.”!!!
And I’m sure there was more that I’ve blanked.

Tough decision
I was ready for my results. I was confident that it was nothing to be worried about. After all, I’d been told it wasn’t cancer. WRONG (kinda)! I had pre-cancer – I had something called complex atypical hyperplasia and I had two choices:
1 – take 16 times the amount of progesterone I was on in the summer (you know when I felt like I was going insane) for three months. Be bioposied again. If the hyperplasia was under control, loose eight stone, try and have IVF. If the hyperplasia wasn’t controlled – have a hysterectomy.
2 – have a hysterectomy.
The consultant wanted me to decide there and then – he also assumed that I would go for option 1 . I didn’t – I needed to talk to my husband. I needed a second opinion. I needed to research it further.
Here’s what my research found:
1. Hyperplasia means you are infertile. My womb was not a healthy or hospitable environment for egg implantation. Getting pregnant naturally was impossible. Getting pregnant and staying pregnant through IVF for someone with hyperplasia? – 1%.
2. A third of all women with complex hyperplasia were found to have cancer once they’d had their hysterectomy.
3. Taking the progesterone was basically a way of clearing out my womb – I would have more horrendous periods over the three months of taking the progesterone.
4. The hormone therapy only works in around 18% of cases. The rest end up having three months of hell and then having a hysterectomy.
5. I would be given around a year to loose eight stone and try and get pregnant – throughout that year I would have a biopsy every three-four months to ensure the hyperplasia was still under control.
None of the above sounded positive. I decided to be logical – even if they didn’t find cancer, I had to think about my periods. Did I really want to spend potentially the next 20 years with periods like I had been suffering? The chances of me getting pregnant seemed slim to none. We had already discussed other ways to be a parent.
So after a second opinion – where my original consultant was as logical as I was - I decided to have a hysterectomy. At 35 years old and without yet having children. To me it seemed like a non-brainer. As it did to pretty much everyone else we discussed it with. Everyone fully supported my decision – this made it easier.

Time to cut
Thanks to my wonderful consultant, I managed to get on the books of one of the top five laparoscopic gynaecological surgeons in the country. My consultant’s thoughts were if I was going to have to endure this operation let’s make it as easy as possible. The surgeon was a softly spoken giant of a man. He immediately made me feel at ease when I met him. He examined me and said that he would be able to the operation on me no problem (basically as long as the surgeon can find and feel your hip bones then you’re ok). My weight was not mentioned once.
I was booked in for 11 December 2014. I went privately.
I went into surgery at around 7pm – I was back up in my room by midnight. I don’t remember much about this at all – morphine is wonderful. My husband had been told all had gone to plan.

The insider knowledge
Hand on heart – although scary and not at all pleasant – having a LAVH (laparosopic assisted vaginal hysterectomy) wasn’t all that bad. I’ll break it down by the lead up, the first 24 hours, the first week, the first month and we’ll take it from there.
The lead up – before the operation you will be told not to eat or drink for a certain period of time. You will also be given a laxative to take. The laxative for me just made me feel like I was having one of my dodgy tummies. I have a sensitive stomach and sometimes its violently upset. This wasn’t so traumatic for me. However, if you are someone you doesn’t have an issue normally, it basically feels like you’ve got food poisoning without the fever or the pain. Just be close to a loo and have moist toilet tissues to hand!
The first 24 hours – the first six hours I don’t really remember post op. I remember being given morphine. I remember thinking the leg pressure thingys were someone touching me on the leg, I remember it feeling like I really needed a wee but being unable to go. You have a catheter in – for me this was the worst thing. It wasn’t painful, just really uncomfortable. You will have packing – basically a whole box of tissues will be shoved inside of you and I think this more than the catheter was making me feel like I needed a wee. You may have a drain in if you have bleed a lot during the surgery. I did – this only hurts when you try and bend. You have a big tube into your pelvis. You will be on a drip – and you will be having saline and antibiotics put through it.
I had 4 tiny incision wounds - one in my belly button, two both sides and one below my belly button. They were about a centimeter across and I had 1 stitch in each one on my belly and two in my belly button. They’re pretty much healed now and not very noticeable.
About 9am I was helped out of bed and allowed to wash my face and body if I wanted to. I washed my face – I thought I was using my face wipes, turns out I was using my moist toilet paper!!
By 12pm my catheter and packing was out and my leg compressors were off – BLISS!! I was then able to get up and go to the loo by myself and move around. My drain was still in but as long as I was careful it didn’t bother me.
Every hour I felt better. I was being regularly topped up with pain relief but the strength of it was slowly being wound down. I was able to eat a little and my stomach was making lots of noise (you fart a fair bit!) and was a little uncomfortable as your intestines begin to work again.
My drain came out around 8pm – it wasn’t very pleasant but I was given morphine to cope with the pain and it was over and done with quickly. Once that was out, I had next to no pain moving around.
The first week – I left hospital at lunchtime on the Saturday – just a day and a half after my operation. I was sent home with more dressings, injections of blood thinner and painkillers. I walked out of the hospital without any help. It felt odd – like my legs and head didn’t really belong to me. I also couldn’t believe it was all over!
The first week had its ups and downs and actually the worst was the fact I had done something to my leg and that was causing me agony (I think due to the position I was in during surgery it pulled a nerve or a tendon in my thigh and its taking its sweet time in recovering!). You feel stiff and a bit battered – it’s uncomfortable to bend and to sit in certain positions but overall I was up and moving around. I was walking for five or so minutes every day and I was able to use the shower and the toilet without help. The husband did have to help me dress for the first week – but that was due to feeling a bit tired and weak and not being able to bend. But I dressed myself one week after the operation no problem (the husband had to return to work).
I was able to eat what I liked, but didn’t feel like huge meals so just had small ones. I was pretty teary – but I think now that was more due to the shock than the kick started menopause. In fact I would burst into tears every time I brushed my teeth for some reason. My pet theory on that is trauma from them trying to knock me out. It took them a while and then had to sedate me to get a line in. I must remember it on some level. But that’s just me – it won’t necessarily be everyone’s case.

The big C
Cancer – a word that strikes fear into nearly everyone. At the time I was adamant that my results would come back negative. There was over a 60% chance I wouldn’t have cancer – that I would be without a reproductive system for no real reason. The husband and I concentrated on being prepared for that. I reasoned that my periods had been so bad that that in itself was reason enough. So when I got the results that cancer had been found I was pretty shocked. But what worried me the most was that I would have to endure more tests or possibly have more treatment. Luckily, I don’t. Cancer was found in a small part of my womb but nowhere else. It had spread to the muscle of the womb but not to my cervix or my ovaries. My perseverance and the fact I have good medical support paid off. My GP and my first consultant didn’t just brush off the fact I had prolonged bleeding being down to PCOS and my weight. They listened when I said “something isn’t right here”. I was lucky.

And finally. . .
What happened to me at my age was really rare. I have a few of the factors that lead to womb cancer – I started my periods before I was 10, I’m white with fair freckly skin, I have a family history of heavy periods, I have a family history of female cancer. I also had PCOS. All these are factors which might lead you to have womb cancer. But equally they might not. However, I would urge you to talk about your periods with your friends and push your GP if you feel something isn’t right. My cancer was put at stage 1a – having the hysterectomy cured me of cancer 100%. I dread to think what would have happened if I’d carried on ignoring what was happening."

If you would be willing to share your story then please get in touch using the contact form.

Kaz xx

My story of a womb cancer diagnosis by J. P.

25/5/2017

This is another personal story from a Peach Sister.

"Nothing can prepare you for being told you have cancer. On July 15th 2016, I took a phone call that would change my life forever. I was 31 and about to be diagnosed with a cancer that I didn’t know existed and that just doesn’t happen to younger people.
Just over 12 months earlier I had started to experience some unusual symptoms. I had PCOS so had always had unpredictable cycles, but I had started spotting. I visited my GP but my symptoms were dismissed as being the result of hormones. This continued for several months until one Friday evening I bled so heavily that I felt compelled to call NHS 111 for assistance. They made an appointment for me at the local out of hours service where I was admitted and discharged in the space of about 4 hours. I had several examinations and blood tests. They wanted to rule out miscarriage, as my husband and I had been in the process of trying to start a family when all these problems started. As the heavy bleeding had slowed to almost nothing they put it down to one of those things and didn’t recommend any further tests.
Several weeks later after constant bleeding I visited a different GP and pushed for an ultrasound, by this point I had been bleeding and spotting for pretty much 3 months straight. My confidence was plummeting, I felt comfortable in nothing but dark leggings, one by one I had to stop netball, running, Zumba and my lovely yoga class. I was exhausted and probably anaemic. Activity exacerbated my symptoms and I spent the whole time worried about leaks. My mood was sinking and I had no idea how much worse it was going to get.
By September, I finally had an appointment for an ultrasound. I could tell by the technicians face that it wasn’t good news, obviously she couldn’t tell me anything but she advised I followed up with my GP. Several days later I received a message to urgently call the surgery. I was referred to a gynaecologist and at this point we triggered our private health insurance. Appointments and biopsies followed, but I didn’t find out I had hyperplasia until after a disastrous trip to Cornwall. During this time I was teaching cookery in a school and couldn’t wait for a half term break to Cornwall. During the long drive down I had started cramping and bleeding heavily, I persevered for the rest of the evening but it seemed to be getting worse. I barely slept and by the following morning it was clear I needed some help. Another call to 111 and they sent me straight to A&E. The next few hours were a horrific blur, I was admitted and hooked up to various drips, I can even remember what they were. 2 days later, we cut short our trip to Cornwall and headed home as I still felt so poorly. After informing my consultant, he decided to do a more invasive biopsy. I was also started on medication that I cannot recall as well being given a prescription for tranexamic acid.
By this point I decided that needed to give up work, I was in constant pain, constantly bleeding so heavily regular sanitary protection wasn’t lasting more than 15 minutes and had to resort to giant granny incontinence pads. I couldn’t cope with being on my feet, my mood was getting lower and lower and my management at the school I worked at were completely unsupportive. I left my role at the end of the term, just before Christmas. We had plans to spend Christmas with our best friends and made the 2 ½ hour journey to their house Christmas Eve with the car packed with food, drinks and presents, we were so excited. Christmas Eve evening I started to experience significant cramps, by midnight I had started bleeding heavily. After a sleepless night, I was running low on sanitary protection (even though I had packed more than I thought I would need for the several days we were suppose to be staying with our friends). It was all getting so bad and I was in so much pain and felt so unwell we had no choice but to decide to drive home on Christmas Day. We stopped at the services on the M4 on the way home and thank goodness Waitrose was open so we could buy a ready meal curry to eat when we got home.
I love Christmas dinner so I was heartbroken, this horrible condition had wrecked my holiday, ruined Christmas, made me stop my activities and made me leave my job. The following month got worse and worse, the pain became unbearable. The pain was so intense I couldn’t breathe or talk during the waves of pain. I couldn’t walk very far without being in awful pain and triggering extremely heavy bleeding. I was a complete mess. I had chest infections, flu, constant infections in my wisdom teeth it was like my body was really struggling and I was just out of energy. Finally I decided with my consultant to try a medication called Zoladex. It shuts down hormones and causes medical menopause.
Finally I got some respite, my symptoms stopped completely. I managed to go on a 2 week holiday without any problems. No bleeding, no spotting and no pain. I finally felt that I could see light at the end of the tunnel. If only, this was true. After our holiday I had another biopsy scheduled. I was so unconcerned by it and as it was just biopsy to be performed in clinic I went on my own. 2 weeks later I went back for the results and my husband almost didn’t come with me as we both assumed it would only be positive news.
How wrong we were, my consultant had bad news. My hyperplasia had changed to complex hyperplasia with atypical cells. I would need another more invasive biopsy, MRI, blood work and my care was transferred to an oncologist gynaecologist. At this point, there was cause for serious concern but my doctors still believed that it was manageable.
On the 11th July I had a biopsy under general. Next few day were spent waiting anxiously for my results. On the Friday my consultant called and told me they had found cancer. My world began to crumble, I couldn’t even finish the phone call, my husband had to take over. My consultant was very kind and gave us his home number so we could call him with questions later that evening. The next few hours and days were spent breaking the news to friends and family. I felt strongly that I could control who I told. I wanted to be honest and open. I had hidden my illness for a long time as it was an embarrassing ‘lady problem’ I didn’t want to do this anymore as I knew I would need support. Unfortunately my consultant was about to go on holiday so I had a long 10 day wait till I would see him again. When I did I asked lots of questions however it was already decided my only treatment option was a total hysterectomy.
I was devastated. I thought my life was over. My case was discussed at the MDT meeting and they also concluded that a total hysterectomy was my only choice as the cells had been graded as grade 2. At this point the cancer didn’t scare me as much as my loss of fertility did. I was 31, I thought I had more time to have a family. I started having panic attacks, couldn’t sleep and generally started to fall apart. My husband was amazing, he worked from home a lot and was just generally around, he cooked dinner (and he doesn’t cook!!) I was so fragile and I honestly thought I would break. Finally my GP started supporting me and was happy to help where she could. I needed sleeping tablets to get any sleep and I started therapy privately. My consultant knew that we had wanted to start a family so he made arrangements for me to be seen by Birmingham Women’s hospital to discuss egg retrieval. The MDT also agreed that we could have 1 attempt. As my cancer was hormone driven there was concern over the use of hormones. Had I known just how hard a process that would be I’m not sure I would have put myself through it.
At my first appointment I met a doctor who wanted me to meet his professor as he believed I should have the option of trying to reverse the cancer with progesterone. Unfortunately when I got an appointment with the professor he pretty much laughed us out of his office. My husband was fantastic driving me to every scan and appointment. Physically and mentally it was completely exhausting. I had scans pretty much every other day for over a month. During the egg stimulation period, my grandma died. Her funeral was 2 days after egg retrieval. I was sore, bloated and tired from the general. It was such a difficult time. Looking back I have no idea how I got through. The day of my egg retrieval I received an email scheduling my hysterectomy for the 21st September. I couldn’t believe all this was happening to me, I felt so powerless. I was so done being poked and prodded. Every appointment felt so invasive.
The day of the hysterectomy was rough. First up the nurse made me do a urine sample to check I wasn’t pregnant, such a kick in the nuts. The surgery went well. I had an open abdominal hysterectomy. Unfortunately the private hospital were not great at managing my pain and I had a horrific first night. The exhaustion of no sleep set me back a little bit but I was up out of bed next day. I spent 3 nights in hospital. I was sick a lot, dignity was left at the door. The surgery really took it out of me. The hospital was not great with pain relief, and sent me home with less than a week’s supply of pain killers. My GP prescribed me some strong pain killers and more sleeping tablets to help me get some rest. Decent pain killers made a big difference, that evening I ate something properly in over a week, and 2 days later I even made it to a bridal appointment to see my sister pick her wedding dress (this was 10 days after abdominal surgery). I’m sure I looked oh so glamourous in the surgical stocking I had to wear for 4 weeks.
In November I switched to a new therapist and have spent months trying to understand my emotions. I had grief, trauma and anger to deal with. I felt strongly in tackling all of this and initially my therapy sessions were very hard and I felt drained after each session. I took all the advice I was given to take things slow, not lift heavy things for a while etc. I knew I had 1 chance at a good recovery so I was a good patient and followed doctor’s orders, incredibly frustrating as it was at the time. Now I am dealing with surgically induced menopause, it’s really hard. Headaches, feeling emotional and vulnerable, migraines, lack of sleep and the hot flashes. People make jokes about hot flashes, but they are awful. My consultant first tried northeristerone to control symptoms, and it did work however it caused terrible headaches, the second medication I tried caused nausea. I’m now trying HRT patches, which means more blood tests to monitor the oestrogen in my system.

The following weeks and months were incredibly hard; recovery from the surgery was slow and even today 7 ½ months later I still get tired easily. I still have a trapped nerve in my wound and still get pain. I have seen a pain specialist who tried a steroid injection. I have good days and bad days still. Although my story is mainly a tale of woe, I can confirm things are brighter, easier and constantly getting better. After almost 2 years I am finally starting to feel like myself again. I am starting to feel at peace with the world again. Cancer took my womb and my chance of having children but I didn’t want it ruin the rest of my life. 6 months ago, I wouldn’t have cared less. In fact I didn’t care if I didn’t wake up, but time is a healer. I have gradually got stronger and at peace with everything that has happened. In September 2015 when I was first unwell I had gone back to college to retrain as a florist, I managed to complete the first year, but had to postpone the second year. However in recent months I have started my own business. I have taken a few orders, I have a few weddings booked and recently I turned Mother’s day (a day I had been dreading) into a positive by advertising bouquets and jam jars filled with flowers for sale. I sold and delivered 37 items. I was so proud of myself.
I am starting to see a future, it’s very different to what we had planned but I am so proud of myself for pulling myself out of such a black hole and starting to take positive steps. Finally, today I went clothes shopping. In the last 12 months the only item of clothing I bought was a dress for my Grandmas funeral, and I have lived in leggings but now I feel I want to wear colours again. I’m ready to wear a skirt or jeans.
I have turned a corner and every day I feel I can achieve and accomplish more and more."

If you would be willing to share your story then please get in touch using the contact form.

Kaz xx

My story of a womb cancer diagnosis by A.T

23/4/2017

Another Peach Sister shares her story.

"I received my diagnosis of endometrial cancer on 8th June 2016. I had my hysterectomy on 16 June 2016 – my 59th birthday. It turned out to be stage 1a – with no further treatment required.   Most people sympathise with having had such a serious operation on my birthday – spoiling the day. I feel rather differently. It was the best birthday present I've ever had. Quite apart from spending most of my birthday high as a kite on post op morphine (something a lot of people would quite enjoy), the surgery saved my life and meant that I am now looking forward to my 60th birthday on 16th June this year and planning a spectacular weekend of partying with my friends.

I was fortunate in many ways. I had a gap of 8 days between diagnosis and surgery – most of us who have gone through this process spend a lot of time waiting and worrying. I didn’t really have time for that. I went into work the following day, told my line manager and colleagues about my diagnosis, and returned to work nearly four months later. I am still working a phased return (4 days a week with 2 worked at home and 2 in the office). My employer still pays me a full time salary for which I'm very grateful and following a meeting with occupational health last week, I will be returning to full time work on 1 July – a little over a year after my diagnosis, and 9 months after I returned to work.

I received excellent treatment, and support from the NHS and cancer support charities from the point of diagnosis onwards. However, the reason that I was operated on so quickly was because the process of diagnosis had taken so long and they had to operate by 16th to ensure that I didn’t breach the NHS cancer treatment time deadlines,. I first went to my GP with post menopausal bleeding in early March. I was referred to a gynaecologist within two weeks and then the process stopped. My referral for a hysteroscopy was considered ‘routine’ and after almost constant badgering for three weeks, I was told that I had an appointment in August. I would probably have accepted that, if I hadn’t been through the same process almost exactly a year before. I got a two week referral and within a total of four weeks, I had had a hysteroscopy, and my follow up appointment and was given the all clear.

Eventually, I had a hysteroscopy on Sunday 29 May – the hospital was trying to clear a backlog so were doing them for a couple of weekends. After my procedure my gynaecologist came through to tell me that she’d removed a couple of polyps (as she had during the previous years hysteroscopy) and that everything looked fine, and a follow up appointment was set up for three weeks later. As I'd been through the process a year before, I thought no more of it, and went back to work a couple of days later after the effects of the general anaesthetic had worn off.   The next week, I got a call while I was in a meeting at work, it was the hospital, bringing my follow up appointment forward to the next day. I knew it wasn’t going to be good news.

The next day I went to the hospital with a friend. The receptionist knew nothing about the appointment, and insisted that I had made a mistake.   I was incredibly upset by this time because I know that when the NHS calls in in a hurry, there's usually a good reason. Fortunately my friend was there to support me, and we insisted on speaking to the unit manager, who eventually confirmed that I had been called in and that I had an appointment. After this little bit of confusion, I was called in to the gynaecologist, and as we went in I noticed that there was a nurse in the room and that her badge included the word ‘oncology’, so any hopes I'd harboured that it wasn’t cancer, evaporated. It was cancer. It looked to be early and unaggressive but that could only be confirmed following surgery which was booked for the following week. After going to work the following day, the rest of the time before I went in was spent having blood tests, scans, and oncology appointments. I don’t remember being terribly upset, although I was worried about my mum, who has dementia. I'm her main carer (alongside my full time job) and I was really worried about would happen to her if things went badly. Immediately after the appointment, I phoned my sister in Germany who was obviously upset, but very kindly took on the responsibility for telling my other sister. I found the process of telling people quite difficult, because I was so worried about their reactions and their sympathy and that would make me break down and cry. I actually feared that if I cried, I simply wouldn’t stop, I am so grateful to my friends and family who supported me through that awful period. I spent a couple of days shopping to make sure that my mum had everything she needed until my sister could get to London and take care of her, and tried to get myself ready for surgery.

I am single, I work full time and am a carer, and although I have no complaints at all about my treatment once I received my diagnosis, I do think that the NHS needs to do more to understand the needs of single patients. Following my surgery, I was due to be discharged the next day, but I was in no state to go home to an empty house so soon after surgery. I needed to be taken care of that night and I almost had to fight to stay in hospital for a second night. No consideration was given to the fact that as a single woman with caring responsibilities for vulnerable adult, I wasn’t able to rest or relax following discharge. I know that the NHS has to meet many sometimes conflicting needs, but many single people wont necessarily have someone they can rely on to support them in the first few days following discharge from major surgery, and that endangers their recovery.

As far as the diagnostic process is concerned. I would urge anyone who has unusual bleeding – to get it checked out. At the same time as I was diagnosed with womb cancer a friend of mine with the same symptoms found out she had cervical cancer – despite annual smears. If its odd, get it checked out, and don’t be afraid to make a fuss if your worries aren’t taken seriously.

Because I'd gone through the diagnostic process exactly a year before and was given the all clear, I knew how it was supposed to work, so knew when it went wrong. We all want to be told that we don’t have cancer, so sometimes, the fact that the medics don’t seem too worried, is something we don’t want to challenge because to us it means theres nothing wrong!"

If you would be interested in writing a guest post for us then please get in touch using the contact form.

Kaz xx

My story of womb cancer by E.H

15/4/2017

Here is another personal story from a Peach Sister.

"Hello, I am a womb cancer survivor. When I have days when I think about what happened to me I feel as if it happened to someone else. I can't believe it did happen to me; after 5yrs clear you would think I would be over it by now. I have got on with my life, you have to.
I was 64 when I noticed there was something not quite right. It was May 2012. I had a small smear of blood after I had been to the toilet. I was a wee bit alarmed. I thought at my age that shouldn't be happening. It only happened the once but I kept a check on myself, then it happened again in the June and that started the alarm bells in my head going off. A bit scared I went to the doctors; she sent me to the hospital where they said I had polyps and I had to get them removed.
By this time it was September and I had to wait until October to get the results. I went to the hospital to get results; at the back of my mind I think I knew what she was going to say.
I just sat down she didn't hesitate, straight out she said you have womb cancer. Well I was numb, I don't know how I felt. Shocked, my mind was all over the place. I just wanted to run away. I felt if I ran away it wouldn't be happening.
My family where distraught; my husband, he was so upset. I just kept saying to everyone, don't worry I'm going to be OK, it's alright I'll be fine.
I had my hysterectomy and all my lymph nodes removed but there was one they couldn't get too. I was told everything went well and that they had got it all. I had to wait two weeks after my op to find out that my cancer was stage 1 and I didn't need any radiotherapy or chemo, but because of the one lymph node they couldn't get out, I was checked every 4 months for 3yrs then every 6 months for 2 yrs until I got the all clear in November 2016.
So that's the story of my journey with womb cancer .I've had lots of scary times and tearful times but I believe early detection saved my life so please don't ignore anything. Get checked ASAP.
So sorry it's been a long story but then it's been a long journey for me too and I'm so thankful I'm still here to tell it."

If you would be willing to share your story or would like to write a guest post for us then use the contact form to get in touch.

Kaz xx

My story of a womb cancer diagnosis - by P.K

14/3/2017

Another Peach Sister shares her story.
"How did womb cancer change my life......this is a question I ask myself everyday day.
I was diagnosed with womb cancer on March 4th 2016 and as they say, it turned my life upside down and I never thought I'd hear those words you have cancer. Actually I'm not sure I really heard them. The consultant was struggling to tell me and by this time I'd guessed.
I was informed that I was booked into have a full hysterectomy on March 17th and they think they've caught it early but couldn't be certain. I was devastated to say the least and had to pull myself as I had to go to department to department for numerous tests.
In the car ride on the way home was the quietest I've ever been. I just sat thinking am I going to die (more tears). Much or Friday and Saturday were pretty much the same. Then I'm not sure what happened but I decided wallowing in self pity wasn't going to get me anywhere. I was given a lot of literature about my condition and decided to kick it under the couch as it was information overload.
I was positive that they had caught it early and I was going to be fine. Telling family and friends was heartbreaking and the sympathetic head tilt was driving me mad. I was put on gardening leave by work and I decided to spend the next couple of weeks cleaning the house and getting out and about.
I met a lady who was due to have her op (for the same reason as me) on the same day, she was very down, she had read all the literature and was away always deep in thought. I tried to bring her back, it was hard and she kept blinking away the tears.

The op came and went, the recovery was tough and after 5 weeks I was told I was cancer free! After 10 weeks I went back to work on temporary reduced hours. Some days are good and some not so good but I am carrying on as normal. I try not to sweat the small things and I'm so grateful for my second chance.
I met that lady 12 weeks later at a MacMillan event and she still wasn't back in work and still not driving and still very down. It made me think, was it my positive attitude that got me through and I think it was. Apart from the menopause, I don't think cancer has changed my life. It was just a blip in life's road! I won't let cancer determine who I am.
I share the message with my friends to get checked if something changes.
I'm sorry if I've rambled on!"

If you would be willing to share your story then please get in touch. You can use the contact form or email us at wcsuk@hotmail.co.uk

Kaz xx