My Story - by G.W

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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




 

 

The road to recovery by D.V

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

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

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

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

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

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

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

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

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


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

Turning Birmingham Peach for Womb Cancer Awareness

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

Let me explain!!!

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

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

 

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



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

 

 

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

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

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

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

Here's to all the Peach Ladies of WCSUK!

My Story of Womb Cancer - by J.H

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

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

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

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


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

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

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

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

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

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

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

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

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

Travel insurance and cancer

A guest blog post by Fiona Macrae from Insurancewith.

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

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

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

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

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

http://www.insurancewith.com/

Struggling to move on after cancer?

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

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

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

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

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

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

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

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

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

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

Is womb cancer a weighty issue?

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

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

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

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

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

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

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