Peach Ponderings

Here is another guest blog for you to read.

My ponderings are peach because I’ve been on an unexpected journey with womb cancer and, as all followers of Kaz’s WCSUK blog will no doubt know, peach is the colour for womb cancer.

I can’t say exactly when the womb cancer journey began for me because who knows when the cancer joined me. Maybe it took a long time to introduce itself, maybe not, but when I finally found out I had a companion I didn’t recognise its name, I knew nothing about it and I didn’t know anyone else who’d been through what I was experiencing. How ironic that, having been taught never to talk to strangers, there I was harbouring one and taking it with me wherever I went. I’d picked up a hitchhiker without realising.

I’ve since found out that approximately 1900 women die from womb cancer each year in the UK and around 8000 annually in the US. I also know that, far from being alone, there is support out there for women who need it. That support is being provided at WCSUK  by other women who’ve been through womb cancer, or by those who’ve lost loved ones to it. It’s no longer as it was when I was diagnosed, I’m no longer alone and you don’t have to be either.

 

Here a blog, there a blog!!!

During September's Womb Cancer  Awareness Campaign we had some guest bloggers write for us here and it was great to see the response that they got. Some of the stories were quite harrowing and some very inspirational. Many thanks to all the lovely ladies who agreed to write for us.

I'd like to share a couple of blogs posts that I came across over the past couple of days and I hope that you will read them and then pass on the links as I think they make very good reading and deserve to be more widely seen.

The first is by a young man who I first came across a few weeks back when I found a blog post he had written about his Mother who had sadly died of womb cancer. It was a moving blog and I reposted it on our FB page. Shortly after, Dan contacted us via the FB page. Turns out that he is in The Philippines and there is a lack of information and support there for women going through womb cancer. Within a few hours, Dan had set up a FB page of his own to fill the void. He is also doing a blog and he has reposted the original post that first alerted me to him. Please read it and share it. It doesn't matter where in the world we are, womb cancer can strike any women.

http://endometrialcancerphilippines.blogspot.co.uk/2012/10/a-woman-named-jocelyn.html


The second blog post that I'd like to share with you is one that I could easily have written myself. It explains exactly how I felt, and still feel about my journey with cancer.

http://imjustsarahcate.tumblr.com/post/33154691916/i-am-not-your-hero

I hope that you will read and share this blog posts and maybe they will inspire you to write something yourself about your cancer journey. If so, please let us know and we'll glady share it here.

Until next time, stay peachy!!!!

Why we're not into pink!!

Well, Septembers womb cancer awareness campaign has now finished and what a busy month it was.

We had lots of great guest blogs from some very inspirational ladies that were read far and wide, according to the analytics. I really want to say a huge big thank you to the ladies that were prepared to share their stories on here; it was very brave of you.

The videos that were made and put over on our youtube channel were also well received. You can view our uploads here http://www.youtube.com/user/WombCancerSupportUK/videos?flow=grid&view=0

Our turn Facebook peach campaign was a great success. It was very uplifting to log on each morning and see lots of peach related updates. A lot of the women in the group had spread the word amongst their friends so by the middle of the month there were peach statuses popping up from all over the world - it was great!!!

Hopefully we have succeeded in raising awareness about womb cancer and many more women are now informed about the signs and symptoms to look out for.

However, just because September is over doesn't mean that the awareness raising stops. It does become slightly more difficult though as we try to "be seen" amongst the tidal wave of pink that is everywhere - in the media; on the web; on tele; in the shops! It seems anything and everything has had a "pink" makeover.

This is just my personal opinion, but I know its one that is shared by many.
Cancer is cancer. A person who gets breast cancer is just as important as someone who gets womb cancer; or lung cancer; or bowel cancer or prostate cancer or any other cancer. The whole industry, and thats basically what it is; that has grow up around breast cancer in the last 20+ years hasn't resulted in less women being diagnosed with  breast cancer. In fact the numbers have gone up alarmingly.

 I would urge you to read "Pink Ribbon Blues" by Gayle Sulik http://gaylesulik.com/  and form your own opinion but I think there needs to be a radical rethink in the way that cancer research as a whole is funded so that rarer cancers (and by that I mean cancers where only a small percentage of the population are affected) are not left out in the cold.

So, on a matter of principle, I won't be wearing pink during October. I want all cancers treated equally and all cancer patients deserving of equal respect.

Cancer kills - it doesn't care what colour ribbon you happen to be wearing!

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 23^rd 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.

http://www.petitionbuzz.com/petitions/wombcancercharity  

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

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

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 58^th 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.

 

 

 

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 3^rd 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.