A Peachy look back over 2013.

As we reach the end of 2013, its time to look back over the past 12 months.

We started of the year by being honoured with the One Team One Goal Advocacy Champion Award(Europe). It was for playing our part in the global coalition-building campaign that unites all gynaecological oncology practise and advocacy groups in signing and supporting the Union for International Cancer Control (UICC) World Cancer Declaration.

 

 

 

In June, we became a member of Cancer52, http://www.cancer52.org.uk/ an alliance of 60+ small cancer organisations who offer support and advice for the less common cancers. It is hoped that by joining forces, all of our voices will be heard as we seek to address the inequality and improve outcomes for patients.



 

In September we held our 1st get together. A group of around 20 women who are part of the private chat group on Facebook got together for a weekend of awareness raising and general "getting to know" each other. Most of us stayed in the same hotel and on the Saturday, we held a photo shoot at a local landmark known as the "floosie in the Jacuzzi".

 

 

 

The awareness raising continued, as always, through the year. New ladies have joined the main page and the number of likers now stands at 837 with 115 in the private chat group.

 

We are reaching out to ever more women and are there to offer to mutual support and advice. The private chat group is a confidential haven for the women to talk in complete privacy about things; and we constantly hear from the women how much they value this space.

 

 

WCSUK is constantly networking with other cancer awareness groups and as many other organisations as we can in the hope of raising awareness of womb cancer.

 

Both myself and Debra were very pleased to be asked to become part of the team of writers for Beauty Despite Cancer http://www.beautydespitecancer.co.uk/blog/ the wonderful website run by Jennifer Young.

 

Networking across Facebook and Twitter brings you into contact with some amazing people - Chris Lewis is one of them. I first came across him on Twitter and his blogs are so well written and speak for a lot of us cancer patients. http://chris-cancercommunity.blogspot.co.uk/ 

 

I have also had the privilege of writing a blog for the Saatchi Bill website http://saatchibill.tumblr.com/ about how innovation can help womb cancer.

 

So, as we look forward to 2014 and our 3rd Birthday in April we can reflect on another good year of raising awareness about womb cancer and more importantly, doing what we set out to do in the first place; offer support and advice to women who are going through or have been through a womb cancer diagnosis.









The Day My Life Changed!

Four years ago, on 23^rd Dec 2009, I heard the words that everyone dreads “I’m sorry, but  you have cancer”

I was alone in the house, and heard the voice of my gynaecologist down the phone explaining to me that the results of the MRI scan I had recently had indicated that I had endometrial, or womb cancer.

In that moment, I stepped aboard the cancer rollercoaster – and I’m still on it 4 years later!!

Surgery, chemotherapy and then radiotherapy followed and then I looked forward to getting back to normal – but I soon realised that there is no “normal” and my health would never be the same again.

I look around me now and see women within the womb cancer support group who, although having to cope with the side effects of their treatment and the hormonal consequences of going through a surgical menopause, are getting on with their lives.

They are back at work; going on holidays; getting on with life! All the things I want to be able to do! I used to love going camping and walking around the lovely island I live on, off the west coast of Scotland.

Four years down the line, my health is worse now that it was when I was diagnosed. Apparently, I am one of the unlucky ones!

Since my treatment ended I have been diagnosed with severe depression; an epi gastic hernia; an underactive thyroid; lymphedema in both legs; I have bowel and bladder problems as a result of the radiotherapy; cognitive issues and memory problems as a result of the chemotherapy; I also have severe fatigue due to not sleeping properly.

To say I am a little p****d off is putting it mildly!

It sometimes feels that having cancer was the easy part – it's dealing with the after effects that is hard work.

I know I’m not the only one who is having  to deal with this; but it sometimes feels like it. Trying to explain to family and friends that just because I no longer have cancer that doesn’t mean that everything is ok!

Living on a small island also means that medical and aftercare facilities are very limited so most appointments involve going to the mainland, which in itself is tiring and only adds to the problem.

We see and hear stories every day of people who have “conquered” cancer and gone on to live fulfilling lives - but we hear very little about the people for whom every day is a struggle.

I don’t want sympathy – I, and the many others like me, just want people to understand how hard it is for us to get through each day.

If you have a womb cancer diagnosis and would like some support or just someone to chat to then join us on the Facebook page https://www.facebook.com/WombCancerSupportUK

My Story - by P.S

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

My Journey started 2 years ago; seems like a lot has happened in those two years The lead up to the start of the journey started on 7th October 2007, my birthday, when I suddenly had a bleed after not having anything for 12 months. I thought this was normal because I did go to the doctor and explain it. I was 52; he said it was menopause and would finish soon.

That bleed did stop as suddenly as it started. The months rolled on and sometimes I had a little spotting, some months nothing. Then suddenly again I started to get really heavy losses, very frightening and draining. I also started having heavy discharges which meant I needed protection every day. I was prescribed iron tablets and Tranexamic acid.

The last heavy loss I had was in October 2010; we were going out and as I stood up to go out the door and had the biggest flood you could imagine, it was all over the floor. It happened 3 times that night. I didn’t go out.

I did go to the doctors again and told him I had no quality of life left; I couldn’t go anywhere. He still said it was menopause but as I was 55 he would do a blood test and a scan. The scan came back inconclusive; he said it didn’t show anything sinister up -  that word has come back to haunt my thoughts many times since.

He changed his mind in a matter of seconds and said I think I will send you for a Hystroscopy. I was bleeding continuously; not heavy but mixed with the discharge it was quite uncomfortable.
This appeared to gather momentum between waiting for hysteroscopy and I appeared to be loosing cells and unidentifiable things, usually at weekends when doctors was closed. I did try to harvest some of it but it never happened at the right time. I hadn't  told anybody in the family up until that point so it was confession time.

My husband came with me for the hysteroscopy. I was terrified. I have a major fear of needles and apart from the odd broken arm and twisted ankles, I had never been in hospital to stay.
I don’t remember much about the hysteroscopy but I will never forget coming round from the hysteroscopy and the surgeon was at the end of the bed; her face said it all. She said it wasn’t what she expected to find and said she would see me the following Tuesday.
She gave me a card with an appointment on and disappeared. I was then given a box of needles and told I would have to do them myself. It was never going to happen, so I had to  have district nurse reluctantly do it. Tuesday took ages to come round.

Off we went with a heavy heart to the maternity hospital for the results. She didn’t try to wrap it all up - she just said "we have found Cancer". It was at that point all the walls fell in on top of me.
She left me with the CNS to try and explain what was happening next. She gave me a load of paperwork and some food to take before op.
The day of the operation came round too soon.  The bit I will never erase from my memory was the 4 or 5 people round me trying to get somewhere to put the needles in. They were cutting my stockings off trying to stick them in my ankles; the back of my hand; inside of my arms. I was so scared.

The operation itself was not as bad as I imagined it was going to be; my first thoughts on coming round were "they haven’t done it" - you hear of people being opened up and being too ill to be operated on, I thought I was one of them! 

I spent 4 nights in hospital with my little card telling me what I should be doing and when day 2 came  I could get up so I did; that made me feel a bit sick so I got told off for that. Decided I wasn’t a good judge so just waited till I was told what to do!

I was up on my feet on 3rd day. I left hospital on day 4 with another 2 carrier bags of needles and was seriously bullied by the nurses to do this myself - another battle of wills which again I won.  I had to trek up to the Dr's every day for the injection.

The appointment came round for the results of Hysterectomy.  This was another shocker -  the Cancer had spread to the outside edge of the womb. I know that because the CNS did a drawing and told me I would need further treatment.

She said I would probably need radiotherapy which they do for 5 days. I stupidly thought that would either be 1week Monday to Friday or once a week. When I went to see the Oncologist he told me I would be having 25 lots of Radiotherapy and 2 Brachytherapy.
I was stunned at the 25 radiotherapy and had never heard of  Brachytherapy. He then told me I had to go for a CT scan and have marking tattoos.

I was just wondering when it was all going to end - it seemed to be on a banana slide getting worse and worse. I was then told it had a 25% chance of coming back. I knew so little about my illness and having not spent much time at hospital, I didn’t know anything about CT Scans and was stunned that you need yet another needle for that.
I couldn’t stand anymore needles. I needed some Emla cream to numb the area; so off we went for tattoo and Radiotherapy. Thinking at least it will soon be over; just 5 weeks and its all going to be done and dusted.

God how stupid was that?

I've realised now it will never go away it will be always hanging over me. 2 weeks from finishing the radiotherapy, the Oncologist called me in for what I thought was a review.  He dropped a bombshell that he had found enlarged lymph nodes in my chest.
He was convinced it was a spread of Cancer and had arranged for me to go to hospital in Birmingham to have a lymph node biopsy via bronchoscopy. More worrying and waiting!

The result of that was no Cancer was found - what a relief.!!!
But no, the oncologist wasn’t happy and opted for 12 months of comparison CT scans, which meant more needles.

They all came back clear -  Phew! I can breath a sigh of relief now!

Well no; the last CT scan showed a blood clot on my lung. So yet more needles and warfarin brought this sorry tale to a rocky conclusion in June 2013.

Good Cancer/Bad Cancer?

Sometimes you hear some cancers referred to as a "good" cancer or a "bad" cancer - it seems my cancer, womb or endometrial, is regarded as a "good" cancer because if its caught early, as mine was, then its treatable and the long term survival rate is very good; around 80% will survive the magic 5 years!

Other cancers are not so good. Some are quite aggressive and not very easy to diagnose until a much later stage, meaning that the long term, even the short term survival rates are very low!

Getting a cancer diagnosis is often a hard thing to accept and patients often spend ages agonising over the "why me?" question.

Imagine how much harder it must be to have a much loved family member get a diagnosis - especially when the diagnosis is of a rare, aggressive and possibly inoperable "bad" cancer!

Cholangiocarcinoma, or bile duct cancer is rare, with around 1,000 new cases each year in the UK. The outlook is apparently not very good, as its rarely diagnosed at an early stage so by the time it is finally diagnosed the outcome is very poor and its usually inoperable.

The feeling of helplessness that I feel as this cancer takes hold of someone I love is very hard to deal with. Knowing that the outcome is far from being a positive one makes it even harder to bear.

As with all cancers, the answer lies with awareness and research. Hopefully this will mean that less people will get this type of cancer and those that do get it will have a better outcome!

Might well be a bit late for my Mom but while we have hope, there is always a chance!

UPDATE: Sadly, Mom passed away on 5th Dec, just 5 weeks from getting her diagnosis. She is sadly missed by all of us. xx

F**K CANCER! Part 2

If you read the previous blog post you will know that cancer has entered my life for a second time; however its now a close family member that is affected, which for me, seems harder to bear than my own diagnosis.

It's tearing me apart to see someone I love so much being worn down by a rare and aggressive type of cancer knowing that there is nothing I can do.

We hear so much about people "fighting" cancer; it seems that every cancer patient has to become a champion fighter in order to beat the dreaded "c" word!

But what about those who choose not to fight? Does it mean they are somehow not as good or weak willed? Do you only deserve to beat cancer if you fight hard enough?

I have admired the way that former Dr Feelgood guitarist Wilko Johnson has handled his terminal diagnosis of pancreatic cancer; they told him back at the beginning of 2013 that he had 10 months to live. He decided against having chemotherapy that might only have given him a couple of months extra and is still here, playing gigs and enjoying his life to the full.

Listen to him explain why he made that decision.

Sometimes as cancer patients we have to accept that fighting is futile and although it may hurt those who are the closest, we hope they will accept the decision.

All cancer patients are brave - those who choose to fight to the end and those who accept the end is inevitable and bow out gracefully.

It doesn't mean that cancer has won; it just means that those of us that are able to fight will fight even harder for everyone else.

F**K CANCER!

Sorry for the language but let's face it, there isn't really any thing nice to say about cancer, is there?

Getting a cancer diagnosis hits you like a brick in the face; it turns your whole world upside down in a split second - those words "I'm sorry, but its cancer" seem to hang in the air for far longer than they should!

Being diagnosed with cancer is probably one of the worse things that can happen to anyone - ask most people and that would be their number one fear!
It puts you on a rollercoaster that never seems to stop.

Having been there and done that, so to speak I thought I was toughened up by cancer, but sadly not.

There is only one thing worse that getting a cancer diagnosis - and that's having a close family member be diagnosed, especially if its a rare, seemingly inoperable cancer!

That's what has happened to me this week.

I felt like I had lost control of my life when I stepped aboard that rollercoaster nearly 4 years ago but its even worse now. To feel so helpless and unable to take away the pain is unbearable. I would rather go through it again myself than see someone I love go through it.


There will be dark days ahead, and many trips on that rollercoaster for everyone in the family, but we will get through this.

I just wish cancer would f**k off and leave us alone.

There is more to Womb Cancer Support UK than just a support group!

Womb Cancer Support UK started back in April 2011 as an online support group for women with womb cancer.

As a womb cancer survivor I realised that there was very little specific support out there for women going through womb cancer, so I started an online support group.

Based on Facebook with a main page and also a private chat page we have slowly grown and now there are over 870 on the main page and 117 in the private chat group.

But we are more than just a support group.

It soon became apparent that there was very little out there about womb cancer - indeed many of the women who are in the group had said that they had never heard of womb cancer before they got their diagnosis.

So we began to raise awareness as well as offer support to those women who had been diagnosed.

We are raising awareness of the signs and symptoms in the hope of getting other women to be womb aware and know what to look out for.

One of the ways we do this is by encouraging women to share their story by writing for our blog.

We have featured around a dozen stories from womb cancer survivors - women who bravely shared their stories in order to help raise awareness.

We are also on Twitter and network with a lot with other cancer charities and support groups to help raise awareness of womb cancer.

If you are going through womb cancer, or know someone who is. then please feel free to come and join us.

We are on Facebook here https://www.facebook.com/WombCancerSupportUK but we also have a website here http://wombcancersupportuk.weebly.com/ and you can follow us on twitter here
https://twitter.com/WombCancerUK

There is strength in numbers and we need to raise the profile of womb cancer so that there is the same level of awareness about it as there is for other female cancers.

Our motto is - No one fights alone!