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Review of Focus Group on diet and physical activity

24/7/2014

One of our ladies recently attended a focus group run by researchers at University College London (UCL) and has sent us a write up of the event.

"I attended a Focus Group for Womb Cancer Survivors who had completed treatment last weekend. It was held at the University College of London as part of a PHd study exploring the patient's attitude to diet and healthy lifestyle beyond cancer. Members of the group explained what they personally believed constituted a healthy lifestyle. This covered aspects of physical,mental and sexual well being as well as maintaining a balance of work and family comittments.

Everybody recognised the need to consume as many unprocessed foods as possible, although most members still enjoyed regular treats, especially wine!! However quite a few were unable to tolerate certain food groups due to ongoing bowel problems caused by the effect of radiotherapy. It was discussed whether patients should be made more aware of the long term effect of radiotherapy BEFORE they consent to treatment. With regard to exercise,whilst aware of its benefit,some people were unable to participate as fully as they did before diagnosis due to fatigue,whilst others had to adapt the type of activities they performed because of pain and discomfort again caused by radiotherapy. Others benefitted socially and mentally through becoming more active,and some seriously challenged themselves physically as a means of feeling they had beaten cancer. Finally, as womb cancer is affecting a significant number of younger women,many with obesity problems,questions were raised whether an 8 week programme highlighting the benefits of a healthy lifestyle would be worth adopting throughout the country. This would be initially be developed by health professionals who would then train lay people to run the programme in community settings.I found it worthwhile attending the Focus Group, as it was a means of meeting up with other womb cancer survivors,and may hopefully provide help for women diagnosed in the future."

If you are interested in being part of the focus group and taking part in the research you can find out more details here https://www.facebook.com/notes/womb-cancer-support-uk/research-project-about-lifestyle-and-long-term-health/635827919828654

xx Kaz xx

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You are what you eat!

19/7/2014

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The question I hear most is "what causes womb cancer?"

To honest, there is no definite answer to that. There are various factors that make a woman more likely to be diagnosed with womb cancer, such as being obese; or starting her periods at an early age; never being pregnant; being unfit. But there are women out there who tick none of these boxes and still got womb cancer so its evident that there needs to be much more research into whey women are getting it, especially younger women.

Womb cancer has, and still is, thought of as a cancer that post menopausal women get yet there are now women in their 20's and 30's who are now being diagnosed and the numbers will keep on increasing.

One factor that does figure large in around 40% of womb cancer diagnosis cases is obesity. This is definetly one area of awareness that we can tackle head on and its a fairly simple task. Women need to be aware that not maintaining a healthy weight can make you more likely to get, not only womb cancer but other cancers aswell.

The key, as far as I am concerned has to be prevention rather than cure. No one likes dieting; lets all face it we all like nice food. But everyone needs to understand that what you eat has a direct effect on your health.

50 years ago hardly anyone was obese - people ate 3 meals a day at set times. They sat together around a table, as a family and ate proper food. Nowadays, people eat anytime of the day and night, food is available 24/7 and that's where the problem is. Food is too readily available and people just can't say no.,

The food industry is forever coming up with ways to make people eat - adding stuff to foods that literally make you feel more hungry the more you eat. The diet industry is then making a fortune selling low fat/sugar free versions of your favourite foods that you think are going to help you loose the weight that you put on by eating the mass produced, processed stuff in the first place.

.Its time for people to realise that the only way to maintain a health body is to eat proper food. Have you ever looked at the ingredients list on a cake mix packet? Your Gran wouldn't recognise it as a cake. All you need for a sponge cake is eggs, sugar, flour and butter. Nothing wrong with having a slice of cake - a proper cake! Not something that has lots of ingredients in it that you can't even pronounce let alone know what they are!

It makes me so sad to see young children, some still in pushchairs, eating packets of sweets or crisps and drinking fizzy drinks. What sort of health problems are the parents creating for their children? A future epidemic of health issues way beyond what we have now.

How many times have I heard people say "they wouldn't sell it if it was bad for you"? Well maybe its time to stop them from selling it. Stop putting vending machines in schools; feed children proper school meals; educate them at school about healthy eating. Proper food education needs to start from an early age.

In the end however, it comes down to personal choice. If people are going to continually choose processed junk over fresh fruit and veg - even after being told that the latter is better for them, then they have to accept the consequences. So when they get a cancer diagnosis in a few years time and they ask their GP "why me" maybe the GP should turn round and say - "its because you didn't eat a healthy diet like we told you to!"

If you have any views on the subject please leave a comment below.

xx Kaz xx

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Where are the Womb Cancer Ladies?

16/7/2014

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Something has been niggling at me for ages. I spend ages every day reading stuff on Facebook and Twitter - mostly cancer related stuff.

I see lots of stories about ovarian/cervical/breast cancer women – sharing their stories to help raise awareness. But where are the womb cancer women? They are conspicuous by their absence. Why is it that womb cancer fighters/survivors don’t feel able to be open about their cancer diagnosis?

I posted this question on the FB page a couple of days ago and was quite surprised by some of the comments that came back.

https://www.facebook.com/WombCancerSupportUK/posts/666173750127404?comment_id=666778733400239&offset=0&total_comments=27&notif_t=feed_comment

I have always been very open about my cancer – I had never heard about womb cancer (or endometrial carcinoma!!) when I was diagnosed so when it came to raising awareness of it as part of WCSUK I decided to talk about it to whoever would listen. If I was able to raise the profile of womb cancer then I was prepared to write as many blogs and articles as was necessary to get the word out and let people know about womb cancer.

I understand that not every woman feels the same way – some just want to have the treatment and move on. However, when the numbers of women being diagnosed are increasing, especially amongst younger women then something has to be done.

There is no national awareness campaign; no dedicated womb cancer charity and very little research into womb cancer. Things cannot continue as they are – so it falls to us, as womb cancer fighters and survivors to pick up the baton and do it ourselves.

We are up against it though, make no mistake about that. We are a very little fish in a huge pond but we can make some waves. WCSUK is already being seen and heard about – we are part of bigger organisations like Cancer52, the alliance of over 72 lesser known cancers and we are also part of the Scottish Parliament Cross Party Cancer Group.

I’ve been working hard to make links with other organisations and have sent out over 500 of the cards with our details on in the past 3 months, that have been distributed around the country.

However, by far the best way to raise awareness is for women to come forward and share their story. It doesn’t have to be with WCSUK – contact your local paper or one of the women’s magazines who are always looking for stories to publish. You could even make a short video and post it on youtube!!

Another great way of raising awareness is to hold an event. September is Womb Cancer Awareness month so please consider doing something then. Hold a tea party or a coffee morning; give a talk at your local women’s rural or WI meeting; do Race for Life dressed in peach!!

There is a guy in US who wears a pink tutu and has his photograph taken in honour of his wife who had breast cancer – anyone got a husband who would do the same in a peach tutu?????

I'd welcome your thoughts on this subject - feel free to comment here or on the FB page.

xx Kaz xx

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4 Years on.

12/7/2014

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12th July 2010 was the day that I last visited The Beatson Hospital in Glasgow. It was a Monday and I was there for my final session of radiotherapy.

As I walked out into the sunshine and got into the patient transport ambulance for the journey back home, the tears started to roll down my cheeks. I didn't know exactly why I was crying; was it relief that it was finally all over or fear that my safety net had suddenly gone? To be honest, I think it was a bit of both and by the time I had got back onto the island, some 3 hours later, I had come round a bit and was starting to think what the future would hold for me.
Sadly 4 years on and my health is now worse than it ever was before cancer or during treatment. I am one of what would appear to be a growing number of women who have had a womb cancer diagnosis who suffer long term side effects from the treatment.
The treatment has had a severe effect on my day to day life and has impacted on my psychological and emotional well being so such an extent that I rarely go out. I have been left with chronic health conditions - underactive thyroid and lymphedema, and also cognitive and memory problems.

So, 4 years on from the end of my treatment I don't regard myself as "cancer free" - how can I when I've had no follow up appointments. I've not seen my Oncologist since the 3rd week of my radiotherapy sessions. My follow up care has been virtually non existent - and I fell very let down and alone.
And I'm not the only one. According to research carried out for Macmillan, 26% of cancer patients feel a sense of abandonment after treatment ends and 29% say they feel as if they have no one to talk to. A worryingly high figure of 62% have experienced at least 1 psychological condition as a result of cancer and its treatment, according to a survey by British Journal of Cancer.
According to a Dept. of Health survey in 2001/12 42% of gynae cancer patients were not given enough help and care from health and social care professionals once they were back home.

All these figures show the lack of ongoing support and information for all,cancer patients, not just womb cancer ones. Many patients experience difficulties that impact their day to day living, such as returning to work and the lack of information and support is making the situation worse.
It is clear that a lot more needs to be done to support cancer patients once their treatment has ended. There needs to be a range of practical structures put in place to help people; people who have gone through cancer deserve so much better than what they are currently getting. I know there are places in the UK where the follow up support is good, but until all cancer patients can get the same level of support and help then many will be left to struggle, often for years with little or no emotional or psychological support.

xx Kaz xx

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My Story of Womb Cancer - by S.B

9/7/2014

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Here is another personal story of a woman going through womb cancer.

"A journey with cancer is a long, fearful one with all your concentration going on reaching the end. However, it really never ends. Cancer never leaves your mind. The fear of recurrence is ever present – a headache is a brain tumour, a cough is lung cancer, etc., etc. You are never the same person. Your outlook on life changes. This is not necessarily a bad thing. Your life is how you make it.

My journey started two years ago -about eight years after my last period. One day I started a “period” and it progressed just like the periods I remembered, lasting four/five days. However, I knew this was not a true period and that something could be seriously wrong. I made an urgent appointment with my GP and, given my history in that I had once had a polyp removed, she reassured me it was probably nothing but would refer me to a Gynaecologist. My appointment duly arrived and I was examined by a Senior McMillan Nurse. She talked to me during her examination and I got the gist of things in that it didn’t look good. The Gynaecologist then carried out a hysteroscopy and took a biopsy. My next appointment was to be told the bad news that indeed it was cancer and an aggressive one at that – carcinomasarcoma (a double whammy of two cancers). I would require a hysterectomy quite urgently and when “in there” they would discover what Stage I was at and may perform a radical hysterectomy. This was the case and my womb, ovaries, cervix and lymph nodes were removed. My diagnosis was Stage 1 (still contained within the walls of the uterus) Grade 3 because of the aggressiveness of the type of cancer. Inspection of the ovaries, cervix and lymph nodes confirmed the cancer had not yet spread. They could not rule out that stray cells may have escaped but I can just hope this wasn’t the case.

I was very lucky with my Gynaecologist, Dr McKenzie, and I healed very well. I was then passed on to an Oncologist six weeks after my op to see what further treatment would be required. Although I was Stage 1, because of the aggressiveness of the cancer, I was initially recommended to have chemotherapy and radiotherapy as a “belt and braces” measure. It was then decided chemotherapy alone would be enough. I had my first session of chemo and didn’t react very well to the two drugs I was given. My liver was being affected so they decided the next session I would only have one chemo drug. However, I had already started to lose my hair. I was very ill after my second bout of chemo and after discussions with the Oncologist it was decided it was doing me more harm than good and as I was Stage 1 they would discontinue the chemo. I would stress that not everybody gets such extreme reactions from chemotherapy as I did.

I am now two years down my journey and almost back to feeling normal. My hair has grown back and my energy has come back. I am very lucky my cancer was diagnosed early as due to the extreme aggressiveness of my type of cancer I was told within a few months it would have spread through the uterus wall and into my body.

I would, therefore, urge any woman who has any kind of unusual bleeding to please get it checked out quickly. Most of the time it will turn out to be nothing too serious but it is not worth taking the chance and risking your life – GET IT CHECKED! Many women put off as they do not like the intimate examination but please do not “die of embarrassment”

Womb (uterine) cancer is not as well publicised as other cancers and the common belief is that it is an older, obese woman’s disease. This is not true and any woman of any age can get it. Womb Cancer Support UK is a very good organisation.. They have a private chat group on Facebook which has been very helpful to me."

If you are willing to share your story then please email wcsuk@hotmail.co.uk

xx Kaz xx

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My Story of Womb Cancer - by F.T

4/7/2014

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Another in our series of personal stories from ladies going through womb cancer.

"I consider myself one of the lucky ones. My story so far is relatively short, though full of soaring highs and bottomless lows and fingers crossed, is almost at an end.

Although I didn’t know it, my story began in September 2013 with what I thought was an unusually heavy period. My menstrual cycle had always been irregular in all senses but this felt different. I had to phone in sick to work as I was unable to leave the toilet because the flow was so heavy and steady. I went back to work the next day and made a routine GP appointment for two weeks later. The GP told me that it was likely to be connected to age and although I am only 41, it could be the start of the menopause. He prescribed tranexamic acid and said I should take it the next time I experienced the symptoms. I left feeling quite unsatisfied as I wanted to know for sure what the root cause was and as a teacher, I was terrified of starting a bleeding episode in front of a class but I took my prescription and left.

A couple of days after Christmas I started to bleed again with no warning beforehand. It was as if a tap had been turned on. I sat in the toilet for couple of hours, convincing my husband I was okay and that it was ‘just my age’ but I was worried. When I tried to stand up, I almost fainted and called my husband in. He was horrified by the amount of blood he saw but as it had died down and it was in the middle of the festive season, we decided on a call to NHS direct before going to hospital. They advised me to double my dose of tablets and allow three hours before calling for an ambulance. Thankfully the bleeding stopped.

As soon as the surgery opened after Christmas I made an appointment with a female GP and she referred me for an ultrasound as soon as possible. On January 30th, I was lying on the sonographer’s table expecting a quick scan and a long wait for results. However, the internal scan dislodged something and I started bleeding on the table. It was awful. The department was totally unprepared for this kind of bleeding and so they wrapped me in a blanket, stuck me in a wheelchair and left me in a side room whilst they called for the on call registrar. By this time it was 5:30pm on a Friday and most of the staff had gone home. I was terrified and had never felt so alone.

After a 20 minute wait, I was soaked through and very shaky but a registrar finally arrived. She looked between my legs but couldn’t see clearly because of the blood and so called an HCA in to shine a large torch in the right direction. At this point, nothing could humiliate me! The only thing the registrar said during the whole examination was, “Oh dear, this isn’t good. We’re going to admit you.” And then she left. I was so frightened and as so often happens in these situations, my mind began playing worst case scenarios on a loop.

I was admitted to the ward and given my own room which was both a blessing and a curse. A second registrar came in and examined me. I can’t remember anything else he said apart from the one word: cancer. I had to stay on the ward attached to drips for the whole weekend and had MRI and CT scans booked for the Monday morning. The bleeding almost stopped and I felt physically fine so the thought of my life being in imminent danger was almost surreal. I called my husband and he came to the hospital straight away. We sat and talked and cried for much of the evening and agreed that he would contact my parents and sister in the morning as I could barely speak. In many ways, it was a very special weekend as my room filled with family and friends and eventually, the diagnosis slipped into the background.

However, Monday morning soon came around and that was when I first met Mr Owens, my consultant. He examined me and said that it was without doubt cancer and it looked to be a very large tumour on the cervix but we would need to wait for the results of the scans and of a hysteroscopy that would be done under GA the next day. I just sat back and let the great NHS machine take over. I was wheeled here, there and everywhere and at one point had eight people all looking at my lady parts but I didn’t care. I just wanted to know what was happening and how we would deal with it. On the Tuesday, Mr Owens confirmed that it looked very like a Stage 2 cervical cancer and that he would be recommending a course of radiotherapy and maybe chemo when the MDT met. I was discharged and went back to work whilst I waited for the results.

At the end of that week, my CNS called and advised me I would be meeting with the oncology team to plan the radiotherapy the following week. My husband and I waited for the obligatory 90 minutes to see the oncologist but we did not hear what we expected. He told us that the pathology revealed that in fact I had Stage1/2 womb cancer and that the tumour was creeping into my cervix. He told us that this was good news as surgery was now going to be the way forward and I would be meeting Mr Owens again to discuss a radical hysterectomy. In five minutes, my journey had taken another unexpected turn!

We met almost immediately with Mr Owens who told me I was booked in for the 20th February. He listed what I would be losing: my womb, ovaries, fallopian tubes, cervix, top third of the vagina and some pelvic and paraortic nodes. He also listed the horrendous things that could go wrong and possible side effects and got me to sign my consent form. Within days, I was at my pre-op assessment being measured and weighed and given more information. Those three weeks really went by in a blur. I was in the machine and there was no time for me to say stop the ride I want to get off!

By the day of the operation I was all cried out and everything went swimmingly up until the moment my porter came to wheel me down. The theatre I had been booked into had a fuse blow and so I was going to one that had only just opened, the epidural wouldn’t go in and during the course of the operation things hadn’t quite gone to plan and I’d had to have blood transfusions. However, when Mr Owens told me that he thought they’d got it all out, all of these things melted away. I couldn’t believe it.

The recovery in hospital was slow. I was there for eight days in total and found being washed by strangers and eating hospital food quite difficult initially but I soon became institutionalised. I also found my 45+ clips and 8 stitches impossible to look at! My hospital ran an Enhanced Recovery Programme which meant I was up and at ‘em from day three and even had a shower early on. However, it did take me nearly an hour to work out how to get my nighty off and how to wash my hair. On night five, the wound from the drain site began to ‘leak’ and I had to have a stoma bag fitted to cope with it. By day six, I’d made an agreement with one of the nurses that we would put bunting out when I finally had a bowel movement. By day seven, we had success although at the time I thought something was badly wrong as no-one had told the iron supplements would turn it a darker shade of charcoal. By day eight, I was painkiller free, had climbed the stairs unaided and I was desperate for home so I was finally discharged on the proviso that the District Nursing team would come and change my dressing for the drain site wound.

That was 16 weeks ago now and it seems like a lifetime away. I’ve had a follow up meeting at which I was told that I need no further treatment. I was offered brachytherapy but the odds of a recurrence of my non-aggressive form of cancer would only be reduced from 4% to 3% and so we agreed to get on with life. I’ve had infections and still have a recurring pain due to scar tissue but in the words of the oncologist, I’m “cured”.

I think the diagnosis and my recovery has been very tough on my husband, parents and sister. They have seen me at my very lowest and apart from the actual treatment, have felt everything I have been through. I have used the WCSUK support group as my lifeline and I know that they would have benefitted from speaking to other relatives of cancer patients too. For me, being able to check with other ladies that I’m ‘normal’ has kept me sane!

I’ve been overwhelmed with the support I have received from the NHS and can’t help but think of myself as lucky. I’ll be going back to the hospital for five years before I get the all clear but I can live with that! "

If you are willing to share your story then please use then please email wcsuk@hotmail.co.uk

xx Kaz xx

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Review of Focus Group on diet and physical activity

You are what you eat!

Where are the Womb Cancer Ladies?

4 Years on.

My Story of Womb Cancer - by S.B

My Story of Womb Cancer - by F.T

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