Sunday, 30 September 2012

One in Three!

Current cancer statistics say that 1 in 3 of us will be affected by cancer at some point in our lives!
It could be you! Or you! Or me!
Actually, it was me!
I was diagnosed with womb cancer on 23rd Dec 2009.
Womb cancer? I’d never heard of it until I got my diagnosis! I’d heard of ovarian and cervical cancer. I’d even had a smear test a month or so before that came back clear – so how come I’d got womb cancer?
Apparently I ticked a lot of the boxes for risk factors! I was classed as obese; I’d never been pregnant; I had started my periods at an early age; my periods had always been heavy and prolonged.
Turns out I was the perfect candidate for womb cancer – even though I’d never smoked, rarely drank and had been a vegetarian for over 20 years!
Go figure!

So a hysterectomy was swiftly arranged for the beginning of 2010 and then I endured 4 sessions of chemotherapy and 5 weeks of radiotherapy.
All through the treatment, I searched on the internet for information and support. I wanted to talk to other women with womb cancer – women who knew exactly what I was going through and who understood what I was feeling. But I could only find the odd one or two. There must be more out there, I thought. After all, I’d discovered that at that time, over 7,000 women each year were being diagnosed with womb cancer.
 
I used the Macmillan Cancer Support website and a few others but I was perplexed to find that a) there was very little information about womb cancer and b) there wasn’t a dedicated womb cancer charity out there raising funds for research.
After months of scouring the internet looking for information, I decided to do something positive and set up an online support group for women with womb cancer, which I run with another womb cancer survivor.
http://wombcancersupportuk.wix.com/home  
What started out as a small group of women on a Facebook page talking about their experiences and sharing stories has now grown in almost 18 months to a group of over 500.
Women from around the world who, like me, had been searching for other women to talk to. They share their stories; they offer advice and tips but above all they can empathise with each other because they know what its like!
There is still no national dedicated womb cancer charity – but we’re hoping there will be soon. There is a petition running and there are currently over 1,400 signatures. The target is 1,900 – the number of women that are dying each year from womb cancer.

Since my diagnosis, I have discovered that womb cancer is supposed to be a cancer that post menopausal women get, but I was 46 when I was diagnosed, and there are women in the group who are in their 30’s. Sadly, the latest to join us was just 19 when she was diagnosed!
Many of the women say the same as I did – they had never heard about womb cancer.
This needs to change!

Over the years, there have been massive awareness campaigns for breast cancer, cervical cancer, ovarian cancer. Well now its time for there to be one for womb cancer.

We at WCSUK can only do so much; what is needed is a nationwide media campaign by a large cancer organisiation or the NHS. Sadly, it would appear that nothing is likely to happen in the foreseeable future, so it remains for us, the women who have had or are still dealing with womb cancer, to do the awareness raising. So we will continue to do so, because we know just how hard a womb cancer diagnosis hits a woman.  

Present statistics show that around 8,000 women are diagnosed each year, and the numbers are rising.
There needs to be much more awareness of the risk factors and the signs and symptoms to look out for.And it’s not just women who need educating about this. GP’s need to start taking unexplained or unusual bleeding seriously and stop telling women in their 30’s or 40’s that they are too young to get womb cancer.

As many women in our group will tell you; you’re never too young!


Thank you to Margaret MacGillivray for this, and all the other images she created for us during the last few weeks.

I also want to say a huge thank you to all the brave ladies who shared their stories here and the ones who allowed me to use their stories and turn them into short films for our youtube channel.
http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

Together, we will change things. xx

Friday, 28 September 2012

My Story - by SB.

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I was diagnosed with cancer in June 2007, aged 39. I had been for a colposcopy at my local hospital in Ascot and after the examination I was taken into a different room and asked to wait for the consultant who would come to see me. This room had proper sofa's, proper carpet and proper flowers and so I figured I was now in 'proper trouble' as this room was a far cry from the plastic chairs, lino flooring and 9 year old Readers Digests that I was used to.

The consultant, with a nurse, informed me that I had cancer and I would need to go to Queen Charlotte and Chelsea Hospital in London for a biopsy in the next 10 days or so. I called my boyfriend from outside the hospital (at that stage I was still adhering to the 'no mobile phone' signs) and gave him the news. I don't remember what he said, or what I said or for that matter what happened for the next few days. I do remember telling my manager at work whilst we were 'brewing up' together in the works kitchen. I thought I could keep it a secret from everyone but of course she needed to tell her manager and her managers manager. I had to have a couple of short meetings with them as they needed to know if they could do anything for me but most importantly to them - how long would I be off !! I didn't at this point have any answers as I didn't know much more than my appointment date.

The day of the biopsy came and started off more fraught than I hoped it would. I got a local taxi to take me into London and he had very annoyingly left his sat nav on for the previous trip and so we didn't get to where we need to get! In fact, I got out of his taxi at some traffic lights and with my little overnight bag (just in case it was needed) I got into a black cab and I arrived at the hospital more or less on time with a tear stained red face. They assured me I was in good hands I assured them I was crying because of the taxi driver !!!
The London Consultant wasn't best please when I told him my Ascot Consultant told me I had cancer as he said it hadn't been determined yet - so that then added to my emotions as I now didn't know if I did or didn't have cancer - anyway as we now know I DID.

I then had to decide which type of hysterectomy I'd have - the radical were everything is taken out or a type where they leave the ovaries (and therefore the eggs) behind. Up until this stage in my life I hadn't had children but hadn't really ruled them out - however I now had a week to decide if I wanted any in the future. Tough choice. I'm an only child and spoke with my parents about my options and as much as they would have loved grandchildren they also quite fancied the idea of having me around for a bit longer !! The other thing to consider would for me to have 'kept some of my bits' for a bit longer, had a child and then for the cancer to return, and you never know next time I may not have survived, and so the child would then be motherless. We decided as a family to have the lot out!

My operation was scheduled in for 1st August 1998 and so I arrive at Queen Charlotte and Chelsea the day before for them to do all the tests needed. I was in hospital for 11 days which is what was expected, there were no major hiccoughs and everything seemed to have gone well. I was determined to have stitches and not staples and so to make sure, I wrote instructions on both of my hands (where they put the IV line in) and I also wrote instructions on my belly - just to be sure and it worked !

My parents came down from Lancashire and visited me each day, I was surprised and scared by this thought seeing as my dad was 71 at the time and he hadn't driven in London for a l-o-n-g time. Mostly my boyfriend brought them but they did the trip a few times during the day on their own. This wasn't the first time they'd seen me in that state as a few years earlier I'd got into even more trouble when a bowel operation went wrong and I ended up in Intensive Care for 3 days on a life support machine and had three weeks in hospital, so a radical hysterectomy was a breeze!! That was until reality (and the menopause) hit ! Oh what I'd have done for a breeze in those days ! HRT sees me right at the moment. I have to have DEXA bone scans every 2-3years to test my bone density.

I recovered from the operation really well physically but emotionally I wasn't doing so good. I started to see a counsellor at my GP's Practice and she really helped me comes to terms with my loss...even though I hadn't lost an actual person I felt I had lost a part of me and strangely I worried about things like who would have the family photos that my parents have after I had died, and who would I show them to? I don't remember what her answers were to those questions but she did really help me.
About a year after my operation I was approached by a Macmillan nurse again from QC&C and she told me about a group she was getting together to meet up and talk and help each other, it meant me having to commit to 9 trips to London(30 miles away) over the next 9 months and actually 'talking out loud' to strangers! again I was frightened of doing this but I agreed to go and I'm so please that I did. I didn't speak much at first and was even frightened of introducing myself but I met a great bunch of ladies and its 3 years on and we still meet up 2 or 3 times a year....but this time in bars and without a nurse present !

Whilst I was in hospital my Macmillan nurse put my name forward for a 'Special Day' via the Willow Foundation. Luckily I was deemed ill enough to receive one of their weekends (ha ha) and I decided to spend my 40th Birthday in London with my boyfriend - we had 2 nights in a hotel on Park Lane, went to see Mama Mia, the terracotta soldiers at the British Museum, had a tour of Lords Cricket Ground, ate at Bibendem, had a car for the whole time and we were even give money to spend in incidentals, money at the hotel for room services and we were picked up and dropped off back home - it was perfect. The Willow Foundation were amazing and I knew I wanted to 'pay them back' for what they had done for me. I spent a few months racking my brain to think of a way and then came up with the idea of super soft hats for people receiving chemotherapy. I didn't need to have chemo but my mum did for breast cancer 10 years ago, and just so my dad didn't miss out, he has since has prostrate cancer and recently had a huge operation for skin cancer ( the three of us always do everything together !!!!). Its probably a good thing that I dont have any siblings !

I set up a website named Retail & Therapy www.retailandtherapy.com. I donate some of my proceeds to Willow and I hope to work with some other charities too so that they can promote my site and I can donate. I keep the costs as low as I can so that I am able to donate as much as I can. I have the beanies made in the UK by a lady who herself received chemo for breast cancer. The scarves come from Paris.

I'm coming up to being 5 years clear of cancer in August this year and I'm looking forward to cheaper travel insurance ha ha. I still am aware that once you get to 5 years its not a miracle date when everything gets better and this was brought to my attention even more so recently when one of my dear friends from the hospital meet-ups celebrated her '10 year clear' on 10th December and within a day or two found out her cancer was back. She had her operation on Tuesday this week and is currently in ITU due to an allergic reaction to a pain killer. The surgeon is sure the cancer has all been removed but she has a big hill to climb and another 6 months of chemo to get through.

My priorities changed after I had cancer, I decided to go down the healthy eating route (the words horse and stable door come to mind) I got myself an allotment about 1 mile from home, I reduced my working week to 4 days ( I REALLY missed the money for the first few months but soon adapted and would recommend it to any one) and I set up the website. I never realised it would take up so much of my time but it is a labour of love and each donation I make to charity makes it all worth while. I really enjoy my time at the allotment too and it is something I don't think I'd have thought of doing before having cancer. Plus, all the 80 year old men do my heavy digging for me - they moan but they love it really and I get invited to their BBQ's where we swap recipes for courgettes !

Thanks for reading this, I wish you and your loved ones all the very best.



Check out the lovely beanies and scarves here  http://www.retailandtherapy.com/index.html


Thursday, 27 September 2012

My Story by L.S

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I write fiction for a hobby, and it’s always said a proper story should have a beginning, a middle and an end.
My womb cancer story began in February 2010, just before my 58th birthday, when I had a very minor post-menopausal vaginal bleed.
Being an eternal pessimist my first reaction was ‘oh no, I must have something seriously wrong’. I immediately booked an appointment with my GP and was seen very quickly, within a couple of weeks I think. All through the waiting time my mind raced back and forth between ‘it might be just an infection’ and ‘what if it’s something serious?’ I never actually used the term ‘cancer’, feeling almost as if it was a dirty word.
Well, it wasn’t an infection so I was referred to the gynae department of the local hospital. Again the appointment came quite quickly and I was still quietly hoping for a happy ending, even though my mind told me there was no such thing.
My first gynae visit was nearly my last! The doctor was unpleasant, almost brutal in her examination and the nurse wasn’t any better. Anyway, I left the clinic with as much information as I had when I went in—zilch! Except now I knew I’d have to be admitted as a day patient for a hysteroscopy, which, as it turned out after I was anaesthetised, couldn’t be performed. The gynae surgeon drew a little diagram of a closed cervix, told me that was what mine looked like and said she’d keep an eye on me and I might need an MRI scan. ‘See you in six weeks’. Goodbye.
This is the point where, had I been on the ball, I’d have started asking questions and pushing a bit, but being a naive old thing I put my trust in the medics and told myself things can’t be that bad because no-one seems to be too worried. I’d had an ultrasound scan sometime along the way but my memory is a little fuzzy these days so I can’t remember at exactly what stage in the proceedings that took place. I do remember being told there was ‘some thickening’. My lovely friends kept reassuring me that it was probably just fibroids or something of that sort, I’d probably end up having a hysterectomy and wouldn’t I feel wonderful afterwards!
A couple of months rolled by and my minor bleed turned into a permanent stringy discharge, rather like egg white. Still no word from the hospital and by now I was starting to worry again so I thought it might be an idea to chase them up, which I did. Yes, they said, there is a bit of a delay with appointments but it shouldn’t be too much longer. I did eventually get my MRI scan, then another long wait until finally …yessss! I got to see the gynae consultant for my results. Which, despite my previous pessimism, came as a terrible shock. I remember her words still. ‘I think we should do a hysterectomy…it could be cancer.’ The bottom dropped out of my world at that precise moment.
My husband was waiting outside for me. I couldn’t tell him till we got to the car park, then I repeated what the doc had said and promptly burst into tears.
There have been a lot of tears since that day.
Then my surgeon popped off on holidays and left another doctor to break the news a couple of weeks later that yes, it was cancer, and I’d need radiotherapy.
My brother lives close to the hospital that I went to for the RT—an hour each way for me. When he heard the news he invited me to go and stay with him so I wouldn’t have to travel. I remember being quite indignant at the suggestion and told him ‘I’m not going to put my life on hold for this thing.’ I didn’t either. I was lucky enough not to suffer any real side-effects so life went on almost as normal, although, looking back I know I was more short-tempered than usual. And tearful, always tearful.
I was introduced to a wonderful oncologist who suggested that I should have chemotherapy as well. The mere thought of chemo terrified me and after much discussion with my husband I decided not to take that option. I’ll never know whether or not it was the right decision because I had a recurrence in April 2011, which may or may not have happened if I’d taken the chemo route—who knows?
This time I was seen to by a wonderful team of doctors and nurses. I had a urostomy in June 2011 and got so bored in hospital I walked the corridors day and night until I was discharged, after which I carried on walking and exercising until I was properly fit! We knew chemo was the better option this time and as it turned out my terror was unfounded. Again I was quite fortunate to not suffer too many side-effects, although I did find myself getting quite tired most afternoons. And although I tried not to let fatigue get the better of me I realised in the end that I’m not superhuman, I’m the same as everyone else and sometimes I just had to give in to it.
I think my odd sense of humour and determination not to let this cancer beat me has helped me through, along with the massive support I’ve had from friends and family—and of course WCSUK. My emotions have taken a battering and I still sometimes find myself crying for nothing in particular. Hindsight is a wonderful thing, and although I saw my GP as soon as the first symptom showed, I know now I should have pushed to get the original gynae team off their bums!
I think my womb cancer experience has made me more outspoken, more confident in some ways and I’m no longer afraid to utter the word cancer. It’s as much a part of me as is my plastic urostomy pouch!
The end of my womb cancer story hasn’t been written yet.
For now, I’m a womb cancer survivor.
 
 
 

Wednesday, 26 September 2012

My story by C.H

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

I remember very clearly been diagnosed with endometrial [womb ] cancer which was 2 days before Christmas.  I had first been to see my GP 9 months earlier with bleeding between periods; I was not concerned as I had a history with polyps which was what the GP found. I was referred to hospital to see the gynaecologist. In June I had cervical polyps removed in outpatients and with relief I thought that was the end of the matter. I then continued to have bleeding between periods and delayed going back to the GP hoping the symptoms would go away or that the symptoms were related to my age being 43 years of age and hitting the menopause. Never did I think I had womb cancer. In August I decided I needed to go back to my GP, she referred back to the gynaecologists and the GP also arranged an ultrasound. The doctor at the hospital wondered why I had been referred back.  Luckily she spoke to the consultant and made arrangements for me to come in to have a hysteroscopy under a general anaesthetic.
The first mention of cancer was after the hysteroscopy when the consultant came to me. She had found a polyp in the womb which she suggested could be nasty but highly unlikely to be cancer due to my age; she arranged to see  me back in clinic 8 weeks. I was left on my own very upset and confused. Why if it could be cancer was I waiting 8 weeks for the results? I remain very anxious. A couple of weeks later I spoke to one of the consultants I worked for who very kindly speeded up the process to get results, as I wanted to know my histology results were ok before Christmas!!

December 22nd I arrived home after a busy day at work and was just about to go out on a Christmas do. There was a message on my answer machine from the consultant to contact her secretary. I knew then something was not right as consultants don’t usually leave messages on answer machines to contact with them urgently. As it was late I could not get hold of anyone. Burst into tears as I realised my life was about to completely change and was very frightened. Decided still to go out on Christmas do to try cheer myself up but only told 2 friends what was happening. Still managed to go to work the next day. I was trying to be run a busy clinic and spent half the morning trying to contact the hospital to speak to the consultant and specialist nurse. I did not want to tell colleagues what was happening at this stage.
A friend came with me to the hospital in the afternoon and I was given the results by the specialist nurse and the consultant came in later. I knew then it was womb cancer and that I needed a hysterectomy before they told me.  The consultant said I was not going to die but the word cancer felt like a death sentence.  Working in a cancer hospital for several years made me very scared of what could happen. I was told it was aggressive as a grade 3 tumour. I was also told if you are going to get a cancer then womb cancer was the better one to have as had good cure rate; this left very confused. I was also shocked that I would have a surgical menopause. Children were now out of the question. After been diagnosed I decided to be up front with my colleagues as I did not want mix messages and incorrect rumours.
 
The hardest part was telling my family, this was not the Christmas we wanted. Never forget walking into my Mum’s living room and breaking the bad news. The family were very supportive.
The following week I tried to go back to work, got as far as putting on my uniform and realised that it was impossible to back to working in clinics when I was now a patient myself so the uniform went back in the wardrobe and I went off sick.

One my most vivid memories were going for my first appointment to see the gynaecologist oncologist. My appointment card had my name and oncology clinic written on it. I was so use to dealing with other cancer patient’s appointment cards so this was very surreal; the tables had been completely turned on me.
I found it very hard to keep focused on what the consultant was saying did I want my lymph glands removing? Did I want a laparoscopic or an abdominal incision?  Luckily I took a friend to be second pair of ears as I was completely overwhelmed.

I had the surgery on the 3rd January 2006. I recovered very well but was surprised the hot flushes started as soon as I got back from theatre. I decided I wanted to remain positive: hardest part was waiting for the final results after the operation to see if I needed further treatment. The consultant gave me the great news that it was stage 1A. I rang my family and then called into work and told everyone the good news. I was over the moon.


I remained on a high for several weeks but reality began to hit me - especially when I went back to work 4 months later. I started feeling very isolated and anxious; it was hard for some friends and colleagues to understand what I was going through. There was no support group for womb cancer. I wanted to meet other ladies with womb cancer similar to my age. In the September after the diagnosis, I  hit meltdown. I got to the point when I needed to make changes to my life or risk going off work with stress. I cut my work hours down, dropped some of work responsibilities; this meant a pay cut but was worth it. I joined a gynaecology support group in Liverpool. I was referred for counselling. Life slowly started to improve.
 Hospital appointments: These were very hard at the beginning but became easier. I took the day off work and went for a nice treat afterwards shopping; coffee and cake!
The first Christmas after diagnosis was also difficult it was like going through the whole process all over again and I think it can take years to get over the diagnosis. For each anniversary I got a bottle of champagne to celebrate with my friends. I have finally been discharged this year after 5 years and it nice to know now I do not have to worry about the cancer coming back. I appreciate life much more and try not to take things for granted. I did fundraising for the hospital that treated me with a Hafla- a belly dance party.
 I now hope to continue fundraising for my local hospital that treated me. I joined a womb cancer support group on face book so I can now help other women like myself. We are group of women who want to raise the awareness of womb cancer to save more lives and support each other. 

No woman should fight alone.

Monday, 24 September 2012

Its a Peachy Birthday by D.P

International Womb Cancer Awareness Day falls on my birthday. As a womb cancer survivor, I can view that as either very appropriate or as taking things just a tad too far... The jury’s still out, but I did have a good day so I’m not complaining. You might ask what I did that was so special – the answer is that I went to work.
Working is something I’ve done all my life; be it at my studies, at being a mum, at doing my job or at anything else I’ve put my mind to. So many things mesh together to make a person who they are and what I do is a big part of my identity. I guess it defines me in some way. So there I was at work, having a good day, and it reminded me just how very lucky I am.
As a womb cancer patient – and whether I like it or not, that’s officially what I am until the five year monitoring period is up and then, hopefully, never again although, “In this game we never say never,” to quote my surgeon – the one thing I soon got told was that I had to do as I was told.
Now, for a stubborn woman, that was not exactly music to my ears. I said I’d try, I’d do my best, but I wasn’t giving any guarantees. Or maybe the words ‘I’ll try’ came out of my mouth while ‘Yeah, right’ was going through my head. I can’t be totally certain, I don’t recall the exact details of the day I was given the news of the diagnosis, but if you know me well then you’ll draw your own conclusions I’m sure.
‘My Life In Their hands’ wasn’t exactly my favourite title at that point.
At my most ill before the cancer diagnosis, when I couldn’t breathe properly, I couldn’t walk properly and I was in almost constant pain, the one thing I wanted was normality. It was a psychological need that over-rode what my body was telling me and it’s where pushing myself to go to work came in. I got called stubborn – no surprises there! I got told to be kind to myself. I got asked what I was doing there when I should be at home in bed. All kindly meant and the answer was that I was trying to still be me. I needed the normality of doing the things I would usually do and I didn’t want to be beaten by a body I felt had let me down so badly. If that makes me stubborn, so be it. But it also makes me a fighter, it kept me sane and it gave me something to aim for, because I already ‘knew’ before the official diagnosis that I had cancer, I simply didn’t know what sort. And when I was finally told what sort, I’d never heard of it before. And that’s just plain wrong.

Sunday, 23 September 2012

My Story by J.H

August 2011 was a momentous month for me, in more ways than one. I had my two sons visiting from Australia with their families, and life was pretty damn good.
I had felt incredibly tired for weeks – possibly months, but had put it down to the excitement of getting everything ready for their visit, and running round visiting people and places with them, and having great fun and laughter with all the joys that having a 15 month old baby in the house brings.
I was 53, soon to have my 54th birthday in September.  I was having a horrible time with the menopause – had I finished my periods or not?
Every time I thought  I had, I had such a disappointment to find that, actually, after 6 months of having no periods, along came another. I didn’t pay too much attention to it to be honest, I was far too busy getting on with life – planning for the visit, running the Canine Charity that I had founded with a couple of friends, and looking after my 80 year old mum. 
However, just before August I started to bleed after nothing for 9 months, and just didn’t stop. I was so fed up after four weeks of bleeding that I decided to pop to the doctor to ask for some tablets which would stop the bleeding and make me feel lesstired.  What a shock when I saw him and asked him for some medication, when he said ‘Yes, I could certainly do that for you.  But I wouldn’t
be doing what is best for you. Bleeding like this and for so long, is not usual and we need to get this checked out – it will probably benothing at all, but it needs to be checked’.

There and then he phoned and got me an appointment for the following week, to see a Gynaecologist at a local hospital.  I thought it would be a quick visit, possibly an examination and that would be it. But no. After taking my medical history – problems with very painful periods from the age of 13, a son born by Ventouse, the next by emergency C Section, endometriosis and fibroids - I had a smear testand was booked in for various ultrasound scans and a hysteroscopy.

On the 15th September, my sons and their families went back home, and the house was quiet again. I was really sad, missing them from the outset, but that happens every time. I had the scans, and went for the hysteroscopy, but the doctor couldn’t manage to do it under a local anaesthetic, so I had to be admitted for a general, which was done on the 28th September 2011 – it’s strange how dates have now become very important to me! 
I was in and out on the same day, and went home armed with an appointment to see the consultant in 2 weeks time. However, the very next evening I had a call from the hospital asking if I could pop along to see the doctor the following day.  I explained that I already had an appointment for a fortnight, but the secretary insisted that the consultant needed to see me thenext day.
That is when I knew.

So, on the 30th September, I went along with my husband, after a sleepless night, and I remember sitting in a different room than usual to see the consultant, a room with lots of different jerseys from various football, rugby and cycling stars. I remember staring at them as the consultant explained that I had womb cancer.
I remember hearing the words, and listening to how, if I had to have cancer at all, this was the ‘best one to have’, but carrying on looking at the framed jerseys on the wall. No tears. No hysterics.
Just a calm acceptance.

I looked at my husband, who was sat next to me, clutching my coat and my handbag.  He was a deep shade of red, and staring at me intently. I kept thinking that we had only just waved our sons off back to Australia – what am I going to do without them near?
I heard the consultant ask me if I was alright, and I said. ‘Yes, I’m fine thank you – so what happens now?’

What happened next was that I was referred to the Christie Hospital. Because I was overweight the consultant I saw decided that he would prefer me to have an apronectomy as well as a Total Abdominal Hysterectomy, so I was also referred to a Plastic Surgeon. A date was arranged for surgery, but I was phoned a week earlier to see if I could go in the next day for surgery. I agreed, and had surgery on 16th November 2011.  I woke up in the Critical Care Unit, after having an
apronectomy, total abdominal hysterectomy and bilateral salpingo oophorectomy, and had a wound which was 20inches long, which took some getting used to, but I had the most fantastic nurse in the CCU, who got me through the 3 days whilst I was in there – I will never forget him.

I was allowed home after 7 days, with the District Nurse coming in to check on me every day. However, the day after going home my 20inch wound decided to come apart, leaving me with 3 pretty big cavities. The disrict nurse sent me back to the Christie for a review, but it was
decided to pack the wound and dress it on a daily basis. So from November through to April 2012 I had a daily visit from the nurse to pack and dress the wound, and a weekly visit to the dressings clinic
for a check and a photograph of the wound to see how things were progressing. Through these weeks there were several dark days, and I was so thankful for my circle of family and friends.

In April I was given the ok to be handed over to the Oncology team. The histology had showed that the cancer had grown into my cervix, so I was prescribed 20 external radiotherapy sessions, and 19 hours ofBrachytherapy (internal radiotherapy). I got through the external sessions with nausea, bowel and bladder problems, and shocking fatigue, which I had expected.  The 19 hours of Brachytherapy was very challenging – not painful, but not being able to move for 19 hours, apart from when the nurses turned you to rub yourback, was difficult. The worst thing was the boredom, and not being
 able to eat or drink much because of being flat on my back, but at 5.30am my 19 hours were up, and I had the tastiest tea and toast EVER!

I experienced very bad back and leg pain a couple of weeks after the Brachytherapy, so the Oncology team organised a CT scan, which showed up a problem with my liver and with my lymph nodes – but no cancer in my pelvic region. Fabulous news!

The hardest thing in dealing with all this was having my sons so far away and having to tell them, and also telling my mum. Watching my husband trying to stay positive and deal with everything was
terrible too. I just wanted to gather everyone who is special to me together and keep them near.

I was very ignorant of the symptoms of womb cancer, and I am especially thankful to my doctor for acting so promptly.  From what I hear doctors like mine are few and far between.
 I have done so many positive things since my diagnosis – after not having a proper holiday in the past five years I have been on two in the past few weeks, I took part in the Sport Relief Mile (only
walking it, but it felt great!), after being a singer up to two years ago I am now singing again and have got a ‘gig’ lined up for Christmas! 
Cancer hasn’t beaten me – it made me evaluate my life and get on and enjoy it.

So here I am, almost 12 months after my diagnosis, 3.5stones lighter (with more to go!), a very strange body shape (I lost my belly button as a result of the apronectomy!), still having good days and bad, but let me tell you – life is damn good!

Thursday, 20 September 2012

Why we need to raise awareness.

Today is 20th September. International Womb Cancer Awareness Day.

I had never heard of womb cancer before my diagnosis - and I'm not alone. There are many women in Womb Cancer Support UK who were unaware of it also.

This is why this awareness campaign is important - if women are not aware of womb cancer then how can they know if they are at risk of getting it?
We are all aware of the various campaigns around for breast cancer; cervical cancer; ovarian cancer but there is nothing for womb cancer.
That is why we at WCSUK are determined to change things!
This is our  2nd awareness campaign! Although we do raise awareness throughout the year, we felt there needed to be a full on campaign to get womb cancer out in the open and get women talking about it.
We are very grateful to the women who have "told" their story - either by writing the various guest blogs that have appeared here during September or allowing their story to be turned into a mini video that have been put on youtube!
You can check them out here! http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

When I got my diagnosis I felt alone and scared! Living on a small island made me even more isolated - there was no one I could talk through who knew how I was feeling.

That was the main reason behind setting up WCSUK - I didn't want other women to feel so alone as I did. The main group now has 500 followers on FB and we have a closed chat group of over 70 women who support each other through the ups and downs of having womb cancer. Some are 5 years+ in remission - others have only just been diagnosed.
The one thing that stands out is the age range. Womb cancer is often regarded as a cancer of post menopausal women but we have women in the group who are in their 30's and 40's, Our latest lady to join us was 19 years ole when she was diagnosed!

This above anything highlights why we need awareness campaigns like the one we are running throught September. There needs to be much more done to highlight the risk factors and the signs and symptoms to look out for.

Sadly, we can only do so much. We are a small group, with no financial backing. But we have the support of some lovely women who are helping to spread the word bit by bit and if we can get more women to be "womb aware" and get any abnormal bleeding checked out by their GP, then we are doing something positive.

Thank you again to everyone who has read the blogs; watched the videos; shared the links; changed their profile picture to something peach. It all helps to raise awareness.

Always remember - no one fights alone!

Kaz xx
©WCSUK