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eve news "You have to put your health first" It's time to be gynae cancer aware Issue 35 Autumn 2017
eve news
"You have to put your health first" It's time to be gynae cancer aware
Issue 35 Autumn 2017
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For many of us, September’s a busy month. So wherever you’re reading this – be it on your way to work, waiting for an appointment, taking a coffee break or just curled up at home – thank you. Without your interest and support, we couldn’t fund research programmes like FORECEE, which recently made headlines and is on the brink of creating the first early warning system for four cancers affecting women.
And while we can’t all be world-class scientists like the FORECEE team, we can all help save lives. Especially now, with Gynaecological Cancer Awareness Month focusing our efforts to combat embarrassment and a killer lack of knowledge. Please have an Eve 4 Eve to raise awareness and funds. Men can get involved too by supporting our #IAmAdam campaign. You’ll find out more in this newsletter, which by the way you may notice has a new look. We hope you like it. Now let’s get cracking…
It’s time to talk openlyAthena LamnisosChief Executive
What’s inside4 Be part of Eve 4 Eve
It’s this month’s must-do event
6 Words of wisdom and experience Five women share theirs
10 Men say #IAmAdam The guys are getting involved too
12 What great partners You generous people have been busy
14 Got a question? Ask Eve and please help our info service continue
More than 21,000 women in the UK are diagnosed each year with gynaecological cancer. And sadly, every day 21 women lose their lives.
Gynae Cancer Awareness Month is about helping to change this, by ensuring people are aware of the signs and symptoms associated with these cancers. And crucially, it’s about smashing any taboos around discussing them. Awareness, plus open and honest conversations, equals earlier diagnosis – which saves lives.
So here at #TeamEve we’re calling on
all ‘Eves’, and all the ‘Adams’ in their lives, to be aware of the signs and symptoms associated with gynaecological cancers. Because it’s not just women who need to be aware; men also need to know and encourage their loved ones to get any signs or symptoms checked out.
Join usCheck out #GynaeMonth, #IAmAdam and #KnowYourBody on social media, or visit www.eveappeal.org.uk/gynaemonth. Join us in speaking up, and smashing taboos.
Smashing taboos with #GynaeMonthAwareness of gynae cancers is very low and many women do not even know there are five: womb, ovarian, cervical, vulval and vaginal. Until this changes, we’re not going to be silent. And right now is a great time to talk.
New
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6 Words of wisdom
10 I am Adam
12 Partner news
13 Supporter news
Cover image Our cover shows Faith who was diagnosed with womb cancer. Read her full story on page 8. Photo by Genevieve Chapman.
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You can do it!
Eve 4 Eve inspirationSupporter MeShell Berry, who lives in the Isle of Man, organised a very bubbly spa evening last year – and raised £662 for The Eve Appeal.
Shocked but defiant“Having gone through several different tests and procedures which came back clear, to be told I had womb cancer at 49 was shocking”, MeShell says. “I had never heard of womb cancer. I wanted to raise money and awareness.”
An amazing time “The event drew a good crowd and everyone had an amazing time! Local businesses and individuals donated fantastic prizes to help our fundraising. So go on, have an Eve 4 Eve. It’s fun!”
Sign up for your free fundraising pack now and get involved with Eve 4 Eve this September.You can have a light-hearted Quiz & Fizz night or a restorative Bubbles & Beauty event. Or Give It Up 4 Eve, and challenge yourself to do without something for the month…all in aid of the cause, of course!
£££ and awarenessAlong with raising funds, Eve 4 Eve ties in with #KnowYourBody, our campaign to spread knowledge and awareness and get people talking about the five
gynae cancers during Gynaecological Cancer Awareness Month, making it a real double whammy towards saving women’s lives.
Sign up nowWhatever activity you choose, we’re here to support you with ideas and advice. Sign up and get your free fundraising pack at www.eveappeal.org.uk/Eve4Eve, email [email protected] or call 020 7605 0100.
A Walk to RememberSoon after this newsletter goes out, A Walk to Remember will be taking place in the stunningly gorgeous Cotswolds. It’s an annual opportunity for Eve supporters to don their walking boots, make time for memories and reflections, and express their determination to change the future for the better.
While it’s too late to sign up for this year’s walk, maybe you’d like to join us in 2018? You can choose between a shorter
or longer route – both are equally beautiful, and trekking either will help raise vital awareness and funds for our research.
Find out more or register your interest by emailing [email protected] or calling us on 020 7605 0100.
Q: What’s currently on your bedside table?A: Oh all sorts!! I have a huge bottle of water, my retainer to stop me grinding my teeth, The Little Book Of Positivity, a pair of glasses and about a million hair ties.
Q: What keeps you awake at night? A: A very annoying and anxious mind!
Q: Who would you invite to your dream Eve 4 Eve?A: How big is the venue???
Q: What drew you to support The Eve Appeal?A: The #KnowYourNormal tag – Team Eve work so hard to end a taboo that SO needs ending. Half the population has a vagina, knowing about it could save your life, so why are we all still so damn awkward about it?
Q: Tell us your big hope for the future.A: To keep encouraging happiness and confidence and self-belief in young girls. More books, more blogs, more taboo-ending conversations with Team Eve.
Be part of Eve 4 Eve60 seconds with… Emily ClarksonIn her witty blogs, articles and new book Can I Speak to Someone in Charge?, Eve supporter Emily Clarkson skewers the absurd expectations that shape the lives of girls and women.
New
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See photos of this year’s trek using #AWalktoRemember on Twitter.
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Kate’s storyThe time that elapsed between Kate attending her routine smear test and having radical surgery for cervical cancer was little more than a month. She’d had no warning signs, and no reason to think her test results would come back as anything but normal.
The shock was enormous: “It was a lot to handle, everything happened so fast”. Although she’s glad she was diagnosed and treated so quickly – “speed was the important thing” – it left Kate in need of a way to process what she’d been through.
“Your smear test is a very important, life saving thing”
She found that writing about her experiences helped: “I went through a phase of really wanting to talk about it. I wrote a couple of blogs and shared them on social media. That’s how I found out about The Eve Appeal. They responded, and I found that very encouraging.”
Today, Kate is well, but is concerned about awareness. “I went for that smear test because I saw it as a routine thing that everybody did. It was just kind of presented as, this is what you have to do. And I don’t know that’s the case anymore. I feel it should be pushed harder and more clearly understood.”
Words of wisdom and experienceCervical. Ovarian. Vaginal. Vulval. Womb. There’s still so much to do to raise awareness of these too-little-known and too-little-talked-about cancers. To mark Gynaecological Cancer Awareness Month, five women with personal experience share what they’ve learned and offer timely advice.
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“The fact that I could develop vaginal cancer didn’t even enter my mind”, says Jackie. “I’d been a nurse for 45 years so I had a fair idea of things. I was trained to do smear tests, I used to teach breast examination, all of that. But I never heard anything about vaginal cancer. It never even entered my head because the only
symptom I got was that I was leaking a bit of urine now and again.”
However, knowing this wasn’t normal for her, Jackie went to her GP in the summer of 2012. It saved her life; six months later, when the problem hadn’t resolved, the GP referred Jackie to a specialist. “And that was it”, she says. “My treatment took me to hell and back, but I’m now getting on with my life, and happy to say I am still cancer-free.”
“Never ignore any kind of symptom”
“There are symptoms listed when you read websites, but mine wasn’t straightforward. I think what needs to improve is, yes, tell women about vaginal cancer and the symptoms, but also to tell women to never ignore any kind of symptom. If something’s not normal for you, go to your GP.”
Faith was trying to conceive, and being treated for endometriosis, when she was diagnosed with womb cancer. “I had the full works, chemotherapy and surgery”, she says. “I’ve had lots of side effects, so it’s just felt like a never-ending round of appointments. It’s had a huge impact on me.”
“We need to take ourselves seriously”
“But I feel incredibly lucky to have been diagnosed. The procedure I had for endometriosis was routine so when the indication of cancer came back from the lab it was a huge shock. Considering the symptoms I was having nobody at any stage had mentioned the possibility of cancer.”
Faith had for many years endured heavy, prolonged periods: “You know that whole thing of ‘what’s normal for
you’…well, it was normal for me to suffer. It was the usual story of not talking about it, not making a fuss and just getting on with it.” This now makes her angry and she is passionate about encouraging other women to speak up: “You are important. You are worth it. You have to put your health first.”
In 2013, Zaynab had an ultrasound that found a large growth in her right ovary. The scans didn’t seem to indicate too much urgency to have it removed, but by the time she had surgery the tumour had grown. Five days after the operation she was told it was ovarian cancer.
“Be aware of what your body is telling you”
Her symptoms – bloating and constipation – had been put down by doctors as a combination of IBS and fibroids. But her efforts to treat it as IBS didn’t work. Finally, Zaynab’s sister suggested she see another gynaecologist.
“Even though it was a delayed diagnosis, and I had a horrible four years prior to being diagnosed, there’ve been so many times when I thought, I just got lucky”, Zaynab says. “Not only did they remove the cancer, I feel I have been given a better chance of surviving it.” Zaynab is now under the care of Professor Martin Widschwendter, whose pioneering research The Eve Appeal is helping to fund: “For me, it’s personal”, she says.
“If I could give one piece of advice to women, it would be do not ignore what your body is telling you. Any kind of pain is not normal.”
Faith’s story
Jackie’s story
“Many women don’t even know the word vulva”, says Karen. And the first time she heard the words ‘vulval cancer’, they were from a dermatologist. “He said, you’ve got a very mild form of lichen sclerosus – it’s an auto-immune condition. And then, he did say, there’s a small possibility it could turn into vulval cancer.”
Karen had been back and forth to doctors for years: “Basically, I’d been sore and irritated down there since my 20s.” She’d always been misdiagnosed with thrush, so hearing she had lichen sclerosus felt like progress.
“Keep going back”
However, a small lump developed – and that was when Karen’s persistence in going to the doctor really paid off. A biopsy established that the lump was cancer. She was referred for surgery to remove that side of her vulva as a matter of urgency. And it was caught before it spread.
She is telling her story today to help raise awareness. “I don’t want to frighten anyone. I just want them to think, as soon as they spot something, no matter what it is, go to the doctor.”
Karen’s storyZaynab’s story
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Helping to break killer taboosDuring Gynae Cancer Awareness Month, and beyond, men (and women too of course!) can show their love and support, and help save lives by watching and sharing our series of #IAmAdam videos.
The videos showcase the experiences of men who have been affected by gynaecological cancer in some way – helping to break the silence that leads to women literally dying of embarrassment.
Let’s talk frankly and honestlyWe’ve developed this campaign to enable and encourage men as well as women to shout about gynae cancer, and raise awareness that could help save a woman’s life.
Mike, whose wife Louise died from a rare form of ovarian cancer last year, decided to take part as a way of doing something positive. “I felt lost, I didn’t really know if I wanted to continue. You feel desperately sad. But I also wanted to make sure that her legacy continued.
“I recognise as Louise’s husband the importance that men play in being there to support the women in their lives. Be aware of the symptoms and don’t be afraid to ask, because the sooner the diagnosis, the better the potential outcome.”
Support and share #IAmAdam now.
Men say #IAmAdamHusbands, fathers, partners, boyfriends, brothers and sons are joining our fight to increase awareness, and combat the feelings of embarrassment that can stop women from seeking help. Because for every woman affected by gynae cancer there’s an ‘Adam’ who loves her.
“Be aware of the symptoms.” Throughout September, we’ll be posting video messages from men like Mike. Search for #IAmAdam on Facebook, Twitter or Instagram, or watch at www.eveappeal.org.uk/IAmAdam. @EveAppeal @EveAppeal @EveAppeal
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Over the last two years, the passion
that Saks Hair & Beauty salon teams and customers have shown for The Eve Appeal has been beyond amazing. With their stellar fundraising they’re on the brink of smashing their £100,000 target. And
they’re not stopping there.During September,
Saks Salon teams are getting up to all sorts to mark Gynae Cancer Awareness Month and several salons are doing a #Saks4Eve Skydive early in October! For hair, beauty and Saks4Eve, go to www.saks.co.uk to find your nearest salon.
You’re beautiful
Everyone knows what a marathon is, but have you heard of the Comrades Marathon?
It’s an ‘ultra-marathon’ covering a punishing 87 kilometres – more than double the traditional distance – between the cities of Durban and Pietermaritzburg in South Africa.
Nick ran it for all of usAnd we’re incredibly proud that among the 17,000 people who took part in the Comrades Marathon this June was one Nick Richards, running for The Eve Appeal and women everywhere.
Nick says: “Before the 5am start outside Durban Town Hall, an old Zulu mining song, Shosholoza, which roughly translates as Keep going, rang out.” Those words helped spur him through 11 hours and 52 minutes of uphill running, cramps and the wall of exhaustion, to the exhilaration of crossing the finish line.
Here’s to you, Nick, and all your generous family, friends and colleagues who sponsored your feat of endurance raising over £8,000 to help fund some next crucial steps in research. Like you, The Eve Appeal is here for the long run.
Here for the (ultra) long runCosy toes, warm heartsOur corporate partners Oliver Bonas have brought out a sweet new product just in time for Gynaecological Cancer Awareness Month – socks for Eve! Wear a pair and who knows, a flash of your ankle might even start an awareness raising conversation.
Oliver Bonas staff are keen to support our work on prevention and early detection: “Many of us have witnessed the effects of gynaecological cancer ourselves”, they say. And we are super excited about the partnership.
The power of teaThe power of the humble cuppa has reached new heights: total donations from this year’s Make Time for Tea parties look set to hit a wonderful £50,000. One superstar tea-timer, Matthew Ryan at the University of Nottingham School of Medicine, wrote to tell us about his inspirational colleague and dear friend Anne-Marie Dwyer, who lost her life to vaginal cancer in 2014: “For her birthday each year (and because Anne-Marie loved cake!) we Make Time for Tea.” The total they’ve raised in memory of Anne-Marie has now topped an amazing £2,000.
Starting new conversationsSusan and Stewart Smith have held a fundraising garden party for The Eve Appeal and are planning three more events. What motivates their committed, diverse support? “When our friend Rebecca died from womb cancer, we wondered if the outcome might have been different if she’d recognised her early symptoms”, Susan explains. “Gynae cancers aren’t discussed as openly as, say, breast cancer. Having lots of different events will allow us to reach more people, and open more conversations about these cancers.”
Never underestimate the pleasure of a lovely pair of socks. These cuties benefit our research too. Get your feet along to Oliver Bonas.
Looking for a partner?Could your workplace become an Eve corporate partner? Contact Vanessa on 020 7605 0102 or [email protected]
Nick in action. If you’d like to take on a challenge for The Eve Appeal, please contact Rosa on 020 7605 0103 or at [email protected]
Great events
Fabu
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If you’re worried about a gynae health issue, Ask Eve will give you an extra line of support.
It’s a free, specialist information and advice service, enabling you to talk in confidence to an experienced nurse about anything to do with gynae cancer. Right the way through from signs and symptoms, and what to expect when seeing a doctor, through to treatment and life afterwards…you really can Ask Eve anything. And it’s not just for women: Ask Eve is also for men who are concerned about a loved one.
“This is the only one for gynae cancers”Since going live in May 2016, Ask Eve has already supported hundreds of women
and their families. An independent evaluation praised the way it’s helped women raise questions and talk about things they can find difficult to discuss with their GP, and the reassurance it provides.
Crucially, Ask Eve’s specialist gynae nurse, Tracie, and information officer Karen, also advise women when they should see a doctor, which can help them get the earliest diagnosis possible.
Would you help give women this brilliant support? We need donations to help keep Ask Eve going and growing. Any gift you feel able to give will be deeply appreciated. To make a gift, call 020 7605 0100 or go to www.eveappeal.org.uk/autumn17
Got a question? Ask Eve.Ask Eve, our confidential, nurse-led information service, is here to listen and help. Just call 0808 802 0019.
This September forGynae Cancer Awareness Month
get involved with Eve 4 Eveto raise funds and awareness
of #gynaecancers.
Find out more and get your free fundraising pack at
www.eveappeal.org.uk/Eve4Eveor call 020 7605 0100.
Sign up to any one of our 3 fundraising activities:
Quiz & FizzBubbles & Beauty Give It Up 4 Eve
Festival of CarolsOn Thursday 7th December join us for our annual Festival of Carols at St. Botolph-without-Bishopsgate right in the heart of central London.
This is the perfect opportunity to gather together with friends and family to share in the festive cheer!
Tickets cost £14 for the service only and £32 for the service and reception.
To join us on this truly magical evening or for more information visit www.eveappeal.org.uk/carols or call 020 7605 0100.
Get involvedBe part of Eve 4 Eve during Gynaecological Cancer Awareness Month1st – 30th September 2017
Join the Simplyhealth Great North Run10th September 2017
Take part in the Bournemouth Half Marathon Festival7th – 9th October 2017
Run the Royal Parks Foundation Half Marathon8th October 2017
Enjoy the Simplyhealth Great South Run22nd October 2017
Celebrate and reflect at our moving Festival of Carols7th December 2017
Get involved in Cervical Cancer Prevention WeekJanuary 2018
Fundraise for us on World Cancer Day4th February 2018
Get in touchIf you’ve got a question, need information or just want to make contact, we’d love to hear from you. Find us at:
T 020 7605 0100E [email protected] W www.eveappeal.org.uk facebook.com/EveAppeal | @eveappeal
15B Berghem Mews, Blythe Road, London W14 0HNGynaecology Cancer Research Fund (The Eve Appeal) is a charity registered in England and Wales (1091708) and Scotland (SC042612). Registered company number 4370087
