Ovacome Summer 2015
Ovacome Summer 2015
Ovacome Summer 2015
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www.ovacome.org.uk Newsletter summer <strong>2015</strong><br />
CURRIE’S FAVOUR<br />
Edwina nails her support<br />
for awareness month<br />
MEMBERS’ DAY<br />
Reviewing the year<br />
and looking to future<br />
NOW OR NEVER<br />
Trial result will bring<br />
big news on screening<br />
it together
comments<br />
contact <strong>Ovacome</strong><br />
Chief executive:<br />
Louise Bayne: 020 7299 6652<br />
l.bayne@ovacome.org.uk<br />
Support services nurse:<br />
Ruth Payne: 020 7299 6650<br />
r.payne@ovacome.org.uk<br />
Steph Poole: 020 7299 6650<br />
s.poole@ovacome.org.uk<br />
Volunteer and<br />
information manager:<br />
Ruth Grigg: 020 7299 6653<br />
r.grigg@ovacome.org.uk<br />
Office manager:<br />
Sonia Vig: 020 7299 6654<br />
s.vig@ovacome.org.uk<br />
Fundraising manager:<br />
Lee Riley, 020 7299 6651.<br />
Email: l.riley@ovacome.org.uk<br />
Support line: 0845 371 0554<br />
020 7299 6650<br />
Email: support@ovacome.org.uk<br />
Administration line:<br />
020 7299 6654<br />
Email: ovacome@ovacome.org.uk<br />
New address: <strong>Ovacome</strong>,<br />
CAN Mezzanine,<br />
49-51 East Road<br />
London N1 6AH<br />
Office hours:<br />
Monday to Friday 10am – 5pm.<br />
Follow <strong>Ovacome</strong><br />
on Twitter and Facebook for<br />
daily news, or visit<br />
www.ovacome.org.uk<br />
Registered Charity Number 1159682<br />
To register as a member of <strong>Ovacome</strong> please<br />
send your details to the following address<br />
or call the telephone number above<br />
© <strong>2015</strong> <strong>Ovacome</strong><br />
49-51 East Road<br />
London N1 6AH.<br />
OVACOME is a voluntary organisation<br />
and relies on donations<br />
The information gathered in this newsletter<br />
is from many sources and is provided for<br />
guidance only. <strong>Ovacome</strong> has made every<br />
effort to ensure that it is accurate but can<br />
make no undertakings as to its accuracy<br />
or completeness. All medical information<br />
should be used in conjunction with advice<br />
from medical professionals<br />
Front cover: Photograph of former<br />
health minister Edwina Currie,<br />
sporting <strong>Ovacome</strong>’s Teal Tips nail<br />
polish ready for appearance on the<br />
Lorraine show.<br />
Designed, produced and printed by<br />
Berforts Information Press Ltd<br />
www.informationpress.com<br />
Welcome to <strong>Ovacome</strong>’s summer newsletter<br />
Spring is traditionally the time when <strong>Ovacome</strong> receives a<br />
welcome boost from fundraising: with awareness month in<br />
March, followed quickly by the London Marathon.<br />
It’s a time that supporters go out of their way en masse to put their name<br />
and time to a charity that has usually helped them or a loved one.<br />
Whether that involved wearing an <strong>Ovacome</strong> ribbon, teal nail varnish<br />
or branded running vest, contributions will go towards us offering our free services<br />
from the nurse led support line, to Members’ Day and this newsletter. So thank you!<br />
But in this issue there are a couple of stories showing how people with no<br />
connection to ovarian cancer are becoming invaluable benefactors: inspired by the<br />
passion for the charity.<br />
First, there’s Rachel Galton who stumbled across <strong>Ovacome</strong> in a Barry M tweet and<br />
went on to raise £538 for us in a church hall gathering (see page 13). Then there’s<br />
Apricot, the fashion retailer which member Adele Sewell persuaded to work with<br />
the charity: this year raising £9,273 and counting, by selling bags, dresses, badges<br />
and Barry M Teal Tips nail varnish (page 8).<br />
<strong>Ovacome</strong> plans to keep year-round momentum with its first fundraiser appointment<br />
(page 6). For fundraising is not just for awareness month.<br />
Happy fundraising!<br />
Thoughts from the chair<br />
Juliet Morrison.<br />
March is Ovarian Cancer Awareness Month (OCAM) and<br />
provides <strong>Ovacome</strong> with an opportunity to raise awareness of<br />
the disease as widely as possible: with our two campaigns this year<br />
reaching millions of people.<br />
We were fortunate to have had celebrities involved in our<br />
#TellYourDaughter (about ovarian cancer) social media campaign that<br />
appeared on television, with former health minister Edwina Currie on the Lorraine<br />
show and former Liberty X singer Michelle Heaton on ITV’s This Morning.<br />
The campaign was also featured in The Sun and the Daily Mirror. Woman’s Own,<br />
Closer and Mother and Baby featured stories on Michelle supporting #TellYourDaughter<br />
and Michelle blogged about other aspects of <strong>Ovacome</strong>’s awareness and fundraising<br />
activities in her OK! blogs.<br />
There was also a feature on Liberal Democrat parliamentary candidate Sarah Smith<br />
on Red online, another on <strong>Ovacome</strong> member Adele Sewell on Telegraph Online, and<br />
various stories on #TellYourDaughter in Yours magazine online, Mature Times, Jump<br />
Start, Choice online, Benhealth magazine and Oncology News.<br />
<strong>Ovacome</strong> also featured in the local press where many of our members shared their<br />
stories and support for #TellYourDaughter. As well as celebrities such as Lorraine Kelly,<br />
Jenny Éclair, Michelle Heaton and Edwina Currie taking selfies with their daughters,<br />
many of our members and supporters also demonstrated their commitment to raising<br />
awareness with their own family selfies. A massive thank you and well done!<br />
Cathy Hughes, chair of trustees.<br />
<strong>Ovacome</strong> was founded in 1996 by Sarah Dickinson. Her husband, Adrian Dickinson,<br />
is a patron of the charity. Trustees to the charity are: Cathy Hughes (chair), Simon<br />
Chantrey (treasurer), Sean Kehoe (medical adviser), Clare Barsby and Noëline Young.<br />
2 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
members’ day<br />
Trials and tribulations<br />
At a time when the number of treatments for advanced ovarian cancer has been<br />
narrowing, women should embrace clinical trials, which give them new options in<br />
a safe environment.<br />
This was a key message from <strong>Ovacome</strong>’s Members’ Day in<br />
which some 70 supporters, including partners, carers and<br />
friends met to hear the latest developments and advice on<br />
living with the disease.<br />
Speaker Andy Nordin, a consultant gynaecologist at East<br />
Kent Gynaecological Oncology Centre, assured delegates that:<br />
“Trials are good.” He explained: “They are important for the<br />
gynae oncology community and there is evidence to show that<br />
people who take part in them do better.” Maybe, he said, this<br />
had to do with the type of people who tended to get involved -<br />
generally a more engaged and informed patient - but regardless<br />
they have been helping everybody all round.<br />
Treatment choices for advanced cancer were reduced<br />
in England last December, when the Cancer Drugs<br />
Fund (CDF), refused to approve Trabectedin and withdrew<br />
Avastin from being available on the NHS for relapsed<br />
disease. This has left the bizarre situation where women<br />
can still access the drug when they are first diagnosed and<br />
treated, which might not actually be the most beneficial<br />
scenario, <strong>Ovacome</strong> chief executive Louise Bayne, said.<br />
In a further blow, last month olaparib, a maintenance<br />
treatment for women with the BRCA gene, was rejected by<br />
the CDF. The drug had received marketing authorisation<br />
from the European Commission in December 2014 on<br />
the basis of phase 2 clinical trial data, however, due to the<br />
relative immaturity of these early phase data, the CDF<br />
rejected the funding application (see page 11).<br />
Clinical trials are a way that women can get access to drugs<br />
like Avastin, which may have been deemed too expensive for<br />
the NHS, but could in fact improve patient outcomes.<br />
However, Louise Bayne,<br />
warned that doctors are not<br />
telling their patients about<br />
trials: something that the<br />
charity is treating as a priority<br />
to resolve. King’s College<br />
oncology nurse tutor Mary<br />
Tanay says that some nurses<br />
too can be reluctant to discuss<br />
trials with patients, as they<br />
are often locked in the oldfashioned<br />
mindset that trials<br />
treat patients like guinea pigs.<br />
“Research guidelines are<br />
now very strict, studies are<br />
closely monitored and safety<br />
reporting is present, guided<br />
by good clinical practice<br />
and a European Directive,<br />
so everyone should be<br />
reassured,” said Mary. Andy Nordin: “trials are good”.<br />
Indeed members, whose current treatment is not working,<br />
should be insistent, said Dr Nordin. “If you are invited on<br />
a trial, I would be keen for you to take up the offer.” And<br />
for those who may not have been approached about a trial<br />
he would urge talking to their oncologist or clinical nurse<br />
specialist to see what potentially might be available to them.<br />
• To find out more about clinical trials, visit: www.nhs.uk/<br />
Conditions/Clinical-trials/Pages/Takingpart.asp<br />
• See full Members’ Day report on pages 4, 5 and 6.<br />
To screen or not to screen<br />
The long-awaited results of a study<br />
into whether women’s lives would<br />
be saved if there was national screening<br />
for ovarian cancer will give the<br />
government no choice but to introduce<br />
a programme or “put the issue to bed<br />
forever”.<br />
So said Andy Nordin, a consultant<br />
gynaecologist at East Kent<br />
Gynaecological Oncology Centre,<br />
at Members’ Day, who described the<br />
UKCTOCs research as the definitive<br />
study and “one of the greatest screening<br />
trials in cancer history”.<br />
“The preliminary results are very<br />
exciting, but the final analysis will have<br />
to show a significant improvement in<br />
women’s mortality (that is, deaths from<br />
ovarian cancer),” he added.<br />
“We should be really proud of Ian<br />
Jacobs’ and Usha Menon’s work on this<br />
£21m study of over 200,000 women<br />
aged 50 and above.”<br />
But whatever the results bring,<br />
<strong>Ovacome</strong>’s chief executive Louise<br />
Bayne told delegates that the study<br />
had provided a “rich environment for<br />
research moving forward”. She said: “It<br />
has given us a massive store of tumour<br />
and blood test samples from people who<br />
have participated, which can be used to<br />
test new technologies.” See page 11.<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 3
members’ day<br />
Community matters<br />
Next year will be the 20th anniversary for <strong>Ovacome</strong>. Much has changed over that<br />
time, but the founding principles of the charity, set down by Sarah Dickinson,<br />
remain today: that of being a support network for everyone affected by ovarian cancer.<br />
This was the message from <strong>Ovacome</strong><br />
chair Cathy Hughes, who was joined<br />
Members’ Day: bringing the community together.<br />
by fellow trustees Simon Chantrey,<br />
Clare Barsby and Noëline Young, who<br />
willingly gave their time to this popular<br />
annual Members’ Day.<br />
Members commented that they<br />
thought of <strong>Ovacome</strong> as a family, a safe<br />
place where they could share concerns<br />
and learn about living with the disease.<br />
Many have already been helping<br />
the charity by getting involved<br />
with volunteering, fundraising and<br />
awareness media work.<br />
Mary Raftery spoke about how when<br />
she retired she wanted to push herself<br />
outside her comfort zone and found<br />
herself promoting <strong>Ovacome</strong> on<br />
Channel 5 TV and other press, and<br />
modelling our charity dress on the front<br />
cover of the charity’s newsletter and<br />
the Tea with <strong>Ovacome</strong> catwalk. When<br />
her nerves kicked in being interviewed<br />
by journalists she calmed herself with a<br />
reminder that she is the expert on her<br />
ovarian cancer journey.<br />
Carolyn Mackrell<br />
talked about<br />
how she makes it<br />
her mission as a<br />
regional ovarian<br />
cancer co-ordinator<br />
for <strong>Ovacome</strong> in<br />
Buckinghamshire<br />
to ensure the local<br />
GP surgeries and<br />
chemists display the<br />
BEAT symptoms<br />
posters.<br />
Kevin Stephens,<br />
who set himself the<br />
ambitious target of<br />
raising £100,000<br />
for <strong>Ovacome</strong> after<br />
losing his wife<br />
Lorraine to the disease, explained how<br />
he quietly wears a teal blue ribbon to<br />
raise awareness and not so retiringly<br />
uses his Aston Martin dressed up<br />
in charity banners to turn heads at<br />
car shows. He invited others to join<br />
his JustGiving page to form a team<br />
to reach what he admits will be a<br />
lifetime’s piece of work.<br />
Clare Barsby explained how rewarding<br />
being a trustee has been since<br />
volunteering after having an ovarian<br />
scare. And Chris Robinson and Jenny<br />
Hayes said they were enjoying doing<br />
their bit to educate the medical<br />
community of the future by talking<br />
about their experience to groups of<br />
nursing and other clinical students,<br />
in the Survivors Teaching Students<br />
programme.<br />
But <strong>Ovacome</strong> needs more volunteers<br />
to step forward. We are looking for<br />
a couple of trustees, and volunteers<br />
in the north of England, around<br />
Manchester, York and Leeds, to<br />
take part in the Survivors Teaching<br />
Students project.<br />
The STS programme, funded by the<br />
family of the late Dr Lisa Jayne Clark,<br />
has proved so popular that medical<br />
schools are booking up the speakers as<br />
a regular yearly slot, said <strong>Ovacome</strong>’s<br />
chief executive Louise Bayne. “We<br />
desperately need more volunteers to<br />
talk in front of doctors and nurses of<br />
the future,” says Louise.<br />
<strong>Ovacome</strong> member and singer Pauly Ortiz took<br />
the group on a rollercoaster of emotions with<br />
a song she wrote when she was going through<br />
chemotherapy - in which she visualised a ship<br />
called Hope travelling towards her as she sat<br />
on a beach - through to a beautiful rendition of<br />
You Raise Me Up.<br />
As well as singing in the Heaven On Earth<br />
band with her husband Jo Ortiz, Pauly,<br />
from Essex, takes comfort from reiki and<br />
mindfulness. She said that she was almost five<br />
years clear of cancer and was contemplating<br />
whether to have a “quiet dignified party, or a<br />
big woohoo!”<br />
4 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
Neuropathy: the<br />
hidden side effect<br />
Chemotherapy-induced peripheral neuropathy (CIPN) is<br />
the forgotten side effect of cancer treatment, Mary Tanay,<br />
an oncology nurse tutor at London’s King’s College told<br />
Members’ Day delegates.<br />
The problem is that unlike other more widely recognised and<br />
visually apparent reactions to chemotherapy, such as nausea,<br />
vomiting and hair loss, CIPN is more hidden and, because it<br />
might not immediately make itself known, can be confused<br />
with other problems.<br />
Mary said that she has a particular interest in researching the<br />
condition, which can be caused by nerve damage from certain<br />
chemotherapy drugs, and usually manifests itself with pain,<br />
numbness and tingling in the hands and feet, as well as muscle<br />
weakness, which can be temporary or last for up to 11 years<br />
after treatment.<br />
She would like <strong>Ovacome</strong> members to contact her if they are<br />
happy to help her research into the condition, which can<br />
also be tricky to pin down because it presents in different<br />
sensations for women. Finger nails on a chalkboard,<br />
walking on a rock at the bottom of the feet and restless<br />
legs with a shooting pain are some of the ways it has been<br />
described, she said.<br />
And with up to an estimated 40% of cancer patients<br />
experiencing long-term symptoms or disability from CIPN it<br />
is important that women know the following basics on what<br />
might help:-<br />
• There are three commonly used drugs - Gabapentin<br />
(for neuropathic pain), Amitriptyline and Duloxetine<br />
- to relieve symptoms, which can be discussed with the<br />
oncologist or neurologist.<br />
• Acupuncture and reflexology is offered by some hospitals,<br />
although research on their efficacy is limited.<br />
• For serious cases, reducing the dose or frequency, or a<br />
discontinuation of the chemotherapy. However, this<br />
should be discussed extensively with an oncologist before<br />
making such an important decision.<br />
• Some hospitals refer CIPN sufferers to a neurologist (who<br />
can thoroughly assess the condition and advise on lifestyle<br />
changes), a physiotherapist (for an exercise programme),<br />
or an occupational health therapist (to provide equipment,<br />
such as handrails next to the bath, or grips for taps to help<br />
with everyday living).<br />
• Fitted shoes should be<br />
worn and rugs removed<br />
to make balance easier.<br />
• And care should be<br />
taken to prevent hot<br />
and cold injuries.<br />
While Mary said<br />
chemotherapy related<br />
side effects are inevitable,<br />
members’ day<br />
Mary Tanay: “the more we<br />
communicate the better”.<br />
treatment to reduce nausea and sickness has greatly improved<br />
during the 15 years she has worked in nursing. “We now have<br />
a big medicine shelf, with a lot of options we can use to reduce<br />
nausea and vomiting,” she says “making both much more<br />
manageable.”<br />
Most importantly, women having chemotherapy should be<br />
aware of the susceptibility to infection, particularly around<br />
day 10-14 after treatment. If a woman feels unwell or has<br />
a temperature, she must call the acute oncology hotline or<br />
oncologist straightaway.<br />
Other side effects of chemotherapy can be unpleasant too, but<br />
Mary said certain action might reduce their impact.<br />
• For oral mucositis, good oral healthcare is essential to avoid<br />
infection.<br />
• When being treated with paclitaxel, women who want to<br />
avoid losing their hair, could try scalp cooling, which can<br />
have varying results depending on thickness of hair and<br />
other factors. It is not suitable for everyone and should be<br />
discussed with a doctor before treatment starts.<br />
• For women who suffer from having a metallic taste it might be<br />
helpful to replace metal cutlery with wood or plastic cutlery.<br />
Crucially, Mary says that women should work closely with<br />
their clinical nurse specialist or key worker to manage<br />
chemotherapy side effects. “Don’t avoid reporting symptoms,<br />
it might be important,” she warns “and assessments inbetween<br />
treatment are very important”, she adds. “Write down<br />
symptoms as they happen. The more we communicate, the<br />
better we can work together.”<br />
• If you have suffered from CIPN and would like to help<br />
Mary in her research, contact her on mary.tanay@kcl.ac.uk<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 5
members’ day<br />
<strong>Ovacome</strong> invests in two key roles<br />
M<br />
eet <strong>Ovacome</strong>’s new fundraising manager, Lee Riley, and support line nurse,<br />
Steph Poole, who participated in their first Members’ Day this May.<br />
Lee has worked within the arts<br />
for nearly 20 years, where she has<br />
fundraised to secure projects and<br />
has been involved in curating<br />
exhibitions, lecturing, researching,<br />
working on large public arts<br />
projects, curating film programmes,<br />
planning and arranging concerts.<br />
She graduated from East London<br />
University with a BA Hons 2:1<br />
Visual Theories: Art and Film and<br />
Lee Riley: exciting projects.<br />
a Masters from The Royal College<br />
of Art in Arts Administration: Curating and Commissioning<br />
Contemporary Art.<br />
She is thrilled to have joined <strong>Ovacome</strong> at the end of February:<br />
”I have had the privilege of getting to know the amazing people<br />
actively fundraising for our work. I have also been touched<br />
by the donations we have received since I started. We cannot<br />
thank you enough.<br />
“In the coming months I will be working hard to fundraise<br />
further. We have major projects that we will be developing over<br />
the coming 18 months: projects that will make a difference.<br />
Recurrence: the hardest blow<br />
News of an ovarian cancer recurrence is often more devastating than the initial diagnosis and so a group of researchers are<br />
about to embark on a project to discover how women facing the disease for a second time can be helped.<br />
To date, there has been very little research carried out on the it having gained a reputation for being positive in helping<br />
experiences of women diagnosed with a recurrence, Dr Emily women with breast cancer, says Dr Arden-Close.<br />
Arden-Close, a lecturer at Bournemouth University, told<br />
delegates.<br />
Also, she says, very few support interventions<br />
have been developed. The aim is therefore<br />
to use the results of this study to design a<br />
web-based support intervention for women<br />
diagnosed with a first recurrence of ovarian<br />
cancer.<br />
Researchers at the Universities of<br />
Southampton and Bournemouth are<br />
conducting the study looking at what women<br />
facing a recurrence found helpful or lacking in<br />
supporting them through this distressing time.<br />
For instance, a similar initiative was carried<br />
out for men with prostate cancer who turned<br />
out to be uninterested in mindfulness, despite<br />
Emily Arden-Close: working<br />
on web-based support.<br />
“This is a very exciting time for <strong>Ovacome</strong>, thanks to<br />
everyone’s generosity. Without your support we would not be<br />
able to continue.”<br />
Steph, who has been working in<br />
nursing since 2000, is employed<br />
two days a week by the charity.<br />
Latterly she has been a bank<br />
nurse in the orthopaedic ward<br />
at the Parkside Hospital in<br />
Wimbledon, to fit around<br />
bringing up two young children:<br />
Joseph, aged eight and Jenny, six.<br />
But she has experience in surgical<br />
and medical oncology and has<br />
Steph Poole: nursing 15 years. worked at the Royal Marsden.<br />
Hobbies include karaoke, with her favourite rendition being<br />
Bryan Adams’ <strong>Summer</strong> of 69, and researching song lyrics,<br />
such as Carly Simon’s You’re So Vain, which she believes is<br />
based on the singer’s former architect boyfriend.<br />
Contact Lee if you would like information about various<br />
ways to fundraise or charity race/cycling event places at<br />
l.riley@ovacome.com or on 020 7299 6651.<br />
Perhaps this technique is more popular with women, she<br />
mused. “But this research will help us to identify<br />
exactly what the patient wants and not what<br />
professionals think they should have”.<br />
The researchers are hoping to find 20<br />
willing participants for this September. If<br />
you are interested, you would be required<br />
to take part in a telephone interview about<br />
your experience of being diagnosed with a<br />
recurrence of ovarian cancer. The interview<br />
should take approximately 30-60 minutes. All<br />
information will be anonymous and kept strictly<br />
confidential. The website will be functional in a<br />
few years’ time.<br />
Contact Emily at eardenclose@bournemouth.ac.uk<br />
if you are interested in taking part.<br />
6 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
news<br />
Tea with <strong>Ovacome</strong> <strong>2015</strong><br />
Adele Sewell and her team of eight staged another knockout event in March,<br />
with 180 guests attending. To make next year’s Tea with <strong>Ovacome</strong> even more<br />
successful, why not get involved urges Adele, who explains how this year’s was the<br />
biggest and best yet.<br />
“Tea with <strong>Ovacome</strong> <strong>2015</strong><br />
was another sold out event,<br />
for the fourth year running<br />
and I am delighted to say<br />
that we raised more than<br />
£10,000 for <strong>Ovacome</strong><br />
which is a record for us.<br />
Also, for the first time this<br />
year we asked guests to<br />
pledge to raise funds for<br />
<strong>Ovacome</strong> between now and<br />
the next Tea with <strong>Ovacome</strong><br />
and together the pledges<br />
totalled £2,900 which is<br />
rather wonderful.<br />
“Louise Diggle is the first<br />
of our pledgers to complete<br />
her target of raising £100 for <strong>Ovacome</strong>.<br />
In fact, she exceeded her pledge by<br />
raising £177 by donating a percentage<br />
of sales from her recent art exhibition at<br />
Wimbledon Art Studios.<br />
Tea With <strong>Ovacome</strong> team (left to right): Kate Pigden,<br />
Karen McGhie, Cherryl Cooper, Jennifer Williams,<br />
Adele Sewell, Carolyn Mackrell, Diane Fraser Pigden,<br />
Jackie Sewell, Juliet Alexander.<br />
“As usual, we remain extremely<br />
grateful to fashion retailer Apricot for<br />
sponsoring the event programme and<br />
donating the lovely canvas goody bags,<br />
On the catwalk: Our members were the stars of the show.<br />
in addition to providing clothing for our<br />
models.<br />
“It was also wonderful to have Philip<br />
Chaimo, the founder and Sophia<br />
Chiampo, the managing<br />
director of Apricot in the<br />
audience this year. For the<br />
first time we also had the<br />
involvement of Simply<br />
Be which provided the<br />
stunning evening dresses<br />
for our models. Our<br />
models were delighted<br />
when both Apricot and<br />
Simply Be gave them all<br />
of the clothing worn on<br />
the catwalk.<br />
“Charlie Penrose<br />
donated his time doing a<br />
photoshoot and hair and<br />
make up were done by<br />
Victoria Penrose, Sarah Marie, Helen<br />
Day, Katie Evans and Karen McGhie.<br />
A special thanks to Ed Tjon Atsoi for<br />
taking a comprehensive collection of<br />
photos at our event; to Barry<br />
M which donated teal nail<br />
polish for the goody bags and<br />
two nail technicians for the<br />
day - Camilla and Marthalla<br />
- and also to milliner Philip<br />
Treacy who gave us a hat to<br />
raffle, raising £250.<br />
“The models of course were<br />
the stars and really gave it<br />
their all. It was interesting<br />
to see how they blossomed<br />
from being somewhat anxious<br />
taking to the catwalk to their<br />
glowing confidence by the<br />
time they completed their<br />
final stint. The crowd loved<br />
them and many guests gave standing<br />
ovations.<br />
“Our speakers on the day were Samixa<br />
Shah and Katie Harrington, who spoke<br />
movingly about their experiences with<br />
ovarian cancer. The event commenced<br />
with a welcome from Louise Bayne, chief<br />
executive of <strong>Ovacome</strong> and our MC, Juliet<br />
Alexander, kept the guests entertained.”<br />
Adele sent a survey to guests after the<br />
event to get some feedback on what<br />
they enjoyed. The following comments<br />
were typical:<br />
• “The humour of the compere, the<br />
genuine love in the room, the<br />
celebration of people’s courage and<br />
above all, the dignity of all the<br />
ladies affected by the illness. Such<br />
events restore hope and belief in<br />
the goodness of humanity at a time<br />
when there is so much chaos and<br />
negativity around.”<br />
• “The ambience, the variety of<br />
activities, the organisation and the<br />
fun and the humour.”<br />
Photo by Ed Tjon Atsoi.<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 7
news<br />
Lights, camera, action:<br />
an awareness success<br />
T<br />
his<br />
year’s awareness month <strong>Ovacome</strong> had the backing of media heavyweights Edwina Currie,<br />
Lorraine Kelly, Michelle Heaton and Jenny Éclair, alongside an army of members who all helped<br />
us reach millions of women with our BEAT ovarian cancer symptoms message.<br />
A special thanks must go to the<br />
former health minister Edwina Currie,<br />
who literally went the extra mile<br />
by travelling down to London from<br />
the Peak District to appear on ITV’s<br />
Lorraine show, dressed in <strong>Ovacome</strong>’s<br />
teal nail varnish. Be sure to buy a copy<br />
of the June issue of Choice magazine<br />
in which Edwina explains how an<br />
ovarian cyst scare and<br />
her political career<br />
led her to supporting<br />
<strong>Ovacome</strong>.<br />
Then there’s former<br />
Liberty X singer and<br />
TV presenter Michelle<br />
Heaton. The media<br />
was falling over itself<br />
to interview her about<br />
her involvement in<br />
our #TellYourDaughter<br />
Our dress in an Apricot social media<br />
shop window, modelled campaign, especially<br />
by <strong>Ovacome</strong> supporter after news broke on<br />
Michelle Heaton.<br />
actor Angelina Jolie<br />
taking the same preventative action as<br />
Michelle had already. It was then that<br />
Michelle spoke poignantly on ITV’s This<br />
Morning and discussed #TellYourDaughter<br />
with Phillip Schofield and Amanda<br />
Holden. And there were follow-up<br />
pieces in both the Daily Mirror and<br />
The Sun, as well as many women’s<br />
magazines. This is publicity gold and we<br />
cannot thank our celebrity supporters<br />
enough.<br />
Our members were incredible too.<br />
Adele Sewell, barely recovering from<br />
her Tea with <strong>Ovacome</strong> extravaganza,<br />
was interviewed for a moving piece in<br />
The Telegraph Online. Sarah Smith was<br />
taking calls from her chemotherapy<br />
suite, to help with PR, as well as<br />
campaigning at the time to become a<br />
Liberal Democrat MP for Dover and<br />
Deal. She gave us a reach into Red<br />
magazine online and her local paper.<br />
Esther Jury appeared on her local TV<br />
channel and was the front page story of<br />
Norwich Evening News.<br />
And that’s not to mention the<br />
hundreds of supporters who backed our<br />
#TellYourDaughter awareness campaign<br />
by posting selfies with their daughters,<br />
nieces, friends and other members of<br />
their families. Every one had a valuable<br />
place in spreading the BEAT acronym:<br />
B is for bloating that does not come<br />
and go; E is for eating less and feeling<br />
fuller quicker; A is for abdominal pain<br />
and T is for telling your GP.<br />
Also many media virgins - including<br />
Sue Woods, Priti Shah, Helen<br />
Standing, Lovis Passfield-<br />
Taylor and Emma Kenyon<br />
- appeared in their local<br />
paper talking about why<br />
they were supporting<br />
Teal Tips, the Barry M<br />
sponsored campaign to<br />
raise awareness by<br />
Selfless<br />
selfies<br />
<strong>Ovacome</strong> volunteer<br />
and information<br />
manager Ruth<br />
Grigg with her<br />
daughters Fleur<br />
(left) and Ursula.<br />
Jenny Agutter (second left): with (left to right),<br />
her nieces Rachel and Georgina and her sister<br />
in law Caroline Agutter.<br />
wearing teal coloured nail polish. Some<br />
£500 was raised by Barry M, which<br />
donated a percentage of every bottle<br />
sold online of the Teal Tips varnish in<br />
February and March.<br />
Fashion retailer Apricot gave an<br />
amazing level of support to <strong>Ovacome</strong><br />
as well. It has raised £9,273.35 and<br />
counting for the charity, with the sale<br />
of the dress it designed for awareness<br />
month, <strong>Ovacome</strong>-branded canvas bags,<br />
the Barry M nail polish and teal ribbon<br />
badges from its high street stores.<br />
Apricot still has the dresses and bags in<br />
stock to sell throughout summer and it<br />
expects the final amount it donates will<br />
be closer to £20,000.<br />
<strong>Ovacome</strong> members in the Apricot fundraiser dress, which is still for sale.<br />
Picture credit: Charlie Penrose.<br />
8 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
ask the doctor<br />
BRCA: unwanted inheritance<br />
Many questions have arisen about the faulty BRCA gene, since the actor and<br />
carrier Angelina Jolie had preventative surgery this spring to avoid contracting<br />
ovarian cancer. Dr Adam Rosenthal, Consultant Gynaecologist at University College<br />
Hospital, London (right), has some answers.<br />
What are the risks of developing ovarian and breast cancer<br />
if a woman is found to be BRCA1/2 positive?<br />
AR: “Depending on which gene, lifetime risks are around<br />
one in two to one in four for ovarian cancer and around 70%<br />
for breast cancer. These risks are far higher than the general<br />
population risks for ovarian and breast cancer (around one in<br />
50 and one in eight respectively).”<br />
What advice do you give to women who have had ovarian<br />
cancer and are found to be BRCA positive?<br />
AR: “It is crucially important for a woman with ovarian<br />
cancer to be BRCA tested, as it may change the types of drug<br />
which can be used to treat the cancer.<br />
“I would advise them to ask their oncologist if there are<br />
any trials of drugs targeted at BRCA-related ovarian cancer<br />
which they could take part in. I’d also advise them to discuss<br />
the result with their family, so that their relatives - male<br />
as well as female - could potentially get tested. If a relative<br />
is found to be positive, they then have the option of riskreducing<br />
measures, which could be life-saving. A positive<br />
BRCA result can predispose men to cancer of the breast,<br />
prostate and pancreas.”<br />
What steps can young women who may not have<br />
completed their families, but are BRCA positive take<br />
to avoid ovarian and breast cancer without having<br />
preventative surgery?<br />
AR: “Although going on the pill can reduce the risk of<br />
ovarian cancer in BRCA-carriers, there is no guarantee that<br />
this will be effective. I tend to advise that if a woman is<br />
happy using it as a contraceptive, and there are no medical<br />
reasons why she shouldn’t, then she should consider using<br />
it. It’s important to know that using modern lower dose pills<br />
does not appear to increase the already very high risk of<br />
breast cancer in BRCA-carriers. I wouldn’t push everyone to<br />
take the pill purely for prevention – it’s very individual.<br />
How about BRCA positive women who have had their<br />
families, should they consider having their fallopian tubes<br />
removed, but keep their ovaries so that they have a natural<br />
menopause?<br />
AR: “We don’t yet know if removing the fallopian tubes<br />
whilst leaving the ovaries behind offers BRCA-carriers<br />
protection, but there is reason to believe it might do.<br />
However, it is not yet known if this procedure increases<br />
the risk of premature<br />
menopause. Short-term<br />
data suggests that it<br />
doesn’t in BRCA-negative<br />
women, but larger/longer<br />
studies are required to<br />
confirm this. Also, if the<br />
woman then goes on to<br />
have her ovaries removed<br />
at a later date, the surgery<br />
might be more complex<br />
because of scar tissue from<br />
her previous operation.<br />
She would also be<br />
exposed to the risks of two<br />
operations, rather than<br />
just one. We do already have good evidence that removing<br />
the tubes and ovaries does prevent tubal and ovarian cancers<br />
in BRCA-carriers, so for the time-being, this has to be<br />
considered standard advice. Some BRCA-carriers do get<br />
tubal/ovarian cancer before the age of natural menopause,<br />
so if only removing the tubes turns out not to prevent all of<br />
these cancers, then delaying oophorectomy (removal of the<br />
ovaries) may be dangerous.”<br />
When else might women consider having their fallopian<br />
tubes removed only, if they are BRCA positive?<br />
AR: “Any time they are having surgery in their abdomen<br />
or pelvis for another reason (e.g. to have their appendix<br />
removed) potentially offers the opportunity for removal of<br />
the fallopian tubes at the same time. This may not always<br />
be appropriate, and if the woman is postmenopausal, then<br />
having her ovaries removed at the same time as her tubes<br />
makes the most sense on current evidence. Even if she is<br />
premenopausal, depending on how old she is, it may be safest<br />
on current evidence to remove the ovaries as well.”<br />
How about women who have had a hysterectomy and<br />
had their ovaries removed as part of their ovarian cancer<br />
treatment, but are at risk of breast cancer because they have<br />
the faulty BRCA gene? Can they take HRT? What are their<br />
options to reduce the chance of getting breast cancer?<br />
AR: “For women who were premenopausal when they<br />
were diagnosed with ovarian cancer, taking HRT is usually<br />
considered fine up to the age of natural menopause (51<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 9
ask the doctor<br />
years), but there is limited evidence about safety in terms of<br />
ovarian cancer recurrence, so this should be discussed with<br />
their oncologist. HRT is not thought to increase the risk of<br />
breast cancer significantly in BRCA-carriers who have had<br />
their ovaries removed and do not take it beyond the age of<br />
natural menopause. Taking it beyond that age may increase<br />
breast cancer risk (which is already very high in BRCAcarriers).<br />
“BRCA-positive women should be able to get high risk<br />
breast screening as part of the National Breast Screening<br />
Programme.<br />
“Having a healthy diet, maintaining normal weight and<br />
getting enough exercise are all good for anyone wanting to<br />
reduce their risk of cancer, but unfortunately, none of these<br />
are guaranteed to completely prevent cancer.<br />
“Breast feeding your children is also thought to reduce<br />
your own risk of breast cancer (possibly in BRCA1 positive<br />
women only). It may also protect against ovarian cancer.<br />
“The risk of breast cancer can also be reduced by taking<br />
certain drugs (tamoxifen and aromatase inhibitors). These<br />
need to be prescribed by a doctor.”<br />
BRCA positive women who have been treated for ovarian<br />
cancer and have daughters will be concerned for their<br />
children. What should they do?<br />
AR: “Once we have identified a specific BRCA mutation in<br />
a family then it is technically possible to offer testing to both<br />
the sons and the daughters of that woman. If the son has<br />
inherited the good copy then there is no need to offer testing<br />
to his daughters. If the son has inherited the mutation then<br />
we could offer testing to his daughters at some stage.<br />
“When testing unaffected daughters it is important to<br />
remember that they have a 50% chance of inheriting the<br />
faulty copy and we need to have a plan of action for those<br />
who have inherited a BRCA mutation. The usual advice<br />
is to consider removing their ovaries and fallopian tubes,<br />
so we would normally delay testing until that woman is old<br />
enough to take preventative measures as outlined above.<br />
However this is a very individual decision and some women<br />
may decide to have testing at an earlier age, but it must<br />
be stressed that they are at 50% chance of inheriting the<br />
mutation.<br />
“If you are the child of a male or female BRCA-carrier, the<br />
risk is the same – it’s 50:50 if you inherit the good copy or<br />
the bad copy of the gene from your BRCA-positive parent,<br />
irrespective of their gender.”<br />
What is the process of being considered for BRCA testing<br />
and having the simple blood test?<br />
AR: “This will depend on a number of factors, such as if they<br />
have been diagnosed with cancer themselves, if they have a<br />
relative who is known to be BRCA-positive, and how strong<br />
the family history of cancer is. Those with cancer should ask<br />
their surgeon/oncologist.<br />
How big a deal is preventative surgery?<br />
AR: “This is hugely individual and depends on if we are<br />
talking about removing the tubes and ovaries, or about<br />
removing the breasts. It may also depend on whether the<br />
woman has been through the menopause or not. The key<br />
thing is for her to get as much advice as possible before<br />
opting for the surgery, so she is clear that she understands<br />
the possible outcomes. This should help the woman avoid<br />
regretting her decision later.<br />
“Keyhole (laparoscopic) surgery to remove the fallopian<br />
tubes and ovaries typically takes around half an hour, but can<br />
take longer. Some women will need to stay the night.<br />
“Recovery time is very variable and again will depend on a<br />
number of factors, including if the woman is menopausal or<br />
not before she has the surgery. I generally advise avoiding<br />
strenuous exercise for six weeks, but most women will<br />
actually feel well physically sooner than this. Getting used to<br />
HRT may take longer, and a minority of women will never<br />
feel entirely happy on HRT.<br />
And how about mastectomy?<br />
AR: “A bilateral prophylactic mastectomy is a major<br />
operation and needs very careful consideration. Some<br />
women may be happy to continue with careful regular breast<br />
screening. Any woman considering bilateral mastectomy<br />
should have a full and open discussion with both her breast<br />
surgeon and her plastic surgeon before making a decision.”<br />
If women have their ovaries and fallopian tubes removed,<br />
what should they be prepared for afterwards?<br />
AR: “If women are premenopausal they should be prepared<br />
for the possibility that taking HRT afterwards may not<br />
make them feel the same way they felt before surgery. For<br />
example, they may notice changes in mood/sex drive. Whilst<br />
most women are glad they had the surgery, some will have<br />
significant side-effects, and it is difficult to predict who is<br />
likely to run into problems.<br />
“There is a small residual risk (around one in 50) of them<br />
developing peritoneal (lining of the pelvis) cancer in the<br />
future, so if they get ovarian cancer symptoms they should<br />
ask their GP for an urgent transvaginal pelvic ultrasound<br />
scan and CA125 blood test.<br />
This piece has been reviewed by Dr James Mackay,<br />
consultant genetic oncologist at University College London.<br />
10 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
news<br />
Olaparib setback<br />
The decision by the NHS England Cancer Drugs Fund to<br />
prevent access to a life prolonging ovarian cancer drug<br />
for women with the BRCA 1/2 gene, has been described as<br />
“devastating” by doctors.<br />
Last month the NHS England Cancer Drugs Fund (CDF)<br />
rejected AstraZeneca’s application to fund LynparzaTM<br />
(olaparib) as a treatment for platinum-sensitive relapsed<br />
(PSR) BRCA-mutated (BRCAm) ovarian cancer.<br />
Olaparib received marketing authorisation from the European<br />
Commission in December 2014 on the basis of phase two clinical<br />
trial data; however, due to the relative immaturity of these early<br />
phase data, the CDF rejected the funding application.<br />
Professor Jonathan Ledermann, Professor of Medical Oncology<br />
at the University College London Cancer Institute and<br />
Primary Investigator of the pivotal olaparib clinical trial said:<br />
“This is devastating news for the small group of women with a<br />
BRCA mutation who would have been eligible for treatment<br />
with olaparib and I am disappointed by the decision of the CDF.”<br />
Screening update<br />
new CA125 screening method can detect twice as many<br />
A women with ovarian cancer as conventional CA125 blood<br />
tests, according to the latest results from the UK Collaborative<br />
Trial of Ovarian Cancer Screening (UKCTOCS),<br />
Scientists found that the new method, which calculates<br />
changing levels of CA125, detected cancer in 86% of women<br />
with invasive epithelial ovarian cancer.<br />
The results come from analysis of one arm of the UK<br />
Collaborative Trial of Ovarian Cancer Screening (UKCTOCS),<br />
the world’s largest ovarian cancer screening trial, led by UCL.<br />
Professor Usha Menon, UKCTOCS co-principal<br />
investigator and trial co-ordinator at UCL, who has led<br />
the implementation of this 14 year trial, says the results are<br />
very encouraging. “They show that use of an early detection<br />
strategy based on an individual’s CA125 profile significantly<br />
improved cancer detection compared to what we’ve seen in<br />
previous screening trials.<br />
“The numbers of unnecessary operations and complications<br />
were within acceptable limits and we were able to safely and<br />
effectively deliver screening for over a decade across 13 NHS<br />
Trusts. While this is a significant achievement, we need to<br />
wait until later this year when the final analysis of the trial<br />
is completed to know whether the cancers detected through<br />
screening were caught early enough to save lives.”<br />
Cameron outlines<br />
greater weekend<br />
access to doctors<br />
seven day week NHS, aimed at addressing the problem<br />
A of more patient deaths at the weekend when there is<br />
less top medical opinion available, was the theme of David<br />
Cameron’s first major speech eight days after being re-elected<br />
as Prime Minister.<br />
The Conservative Party has outlined that it plans to have<br />
more high calibre staff available in hospitals over the<br />
weekend and to recruit an extra 5,000 GPs, in what it calls a<br />
reinvention of the GP service. On Radio 4, the Secretary of<br />
State for Health, Jeremy Hunt, said the idea is for GP surgeries<br />
to employ more nurses and PA type staff to take some of the<br />
burden away from general practice: an area of medicine which<br />
is proving hard to attract new medical students and has a high<br />
burn out rate with existing GPs.<br />
But critics are questioning where the extra £8bn a year funding<br />
by 2020 will come from and also how an equivalent of 5,000<br />
full-time doctors will be found in an area of medicine which is<br />
struggling to replace GPs as they leave the profession.<br />
The Secretary of State for Health, Jeremy Hunt, is due to<br />
make a further speech about the plans before the end of June.<br />
<strong>Ovacome</strong>’s chief executive Louise Bayne (front row, sixth to the right) took<br />
World Ovarian Cancer Day to the charity’s research centre in Birmingham<br />
University. Led by <strong>Ovacome</strong>’s medical advisor Professor Sean Kehoe, the<br />
centre is investigating how tumours change during treatment and how this<br />
data can be used to improve treatment.<br />
It was an appropriate setting therefore for Louise to promote what was<br />
the third of these global events on Friday 8 May in which the four UK<br />
ovarian cancer charities unite to raise awareness. This year, the campaign<br />
celebrated the natural bond between women and encouraged participants<br />
to join in by posting photos on social media and to sign an awareness<br />
pledge.<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 11
fundraising<br />
Photography taken by Ash Narod.<br />
Marvellous<br />
marathon runners<br />
<strong>Ovacome</strong>’s team of eight London Marathon runners<br />
raised over £16,000 for the charity, completing the<br />
26 miler for their own reasons on a perfect April day.<br />
Katherine<br />
Ditch, juggled<br />
marathon<br />
training with a<br />
law degree and<br />
working parttime.<br />
But the<br />
23-year-old from<br />
Katerhine Ditch: tough. Chichester was<br />
determined to run in remembrance of<br />
her “idol”, her Granny, who she lost to<br />
ovarian cancer last June.<br />
Katherine had recently lost six stone<br />
in weight and had acquired a new<br />
love of running. This was her first<br />
marathon and she says “a massive<br />
deal” for her. “With all the conflicting<br />
advice on what to do and not to do<br />
while training, I wasn’t sure if I had<br />
done enough when it came to race day,<br />
which made me unbelievably nervous,”<br />
she says.<br />
The event proved tough, with an ankle<br />
injury in mile 17, but Katherine finished<br />
in 6:51 and raised around £1,200.<br />
“I found the run difficult, especially<br />
the second half, but it was beyond<br />
electrifying. I enjoyed every single<br />
moment,” says Katherine. “I wasn’t<br />
running for a time, I was running for a<br />
well deserved charity.”<br />
Mark Tibbles, hit his target of finishing<br />
in under 3:45, with a 3:34 time and<br />
£2,700 for <strong>Ovacome</strong>.<br />
It was the fourth time the 46-year-old<br />
estate agent from Hemel Hempstead<br />
took part and as always, he says, his<br />
training got him to 20-22 miles, but<br />
the last four were very much a case of<br />
“mind over matter”.<br />
Mark, who lost his first wife to ovarian<br />
cancer in 2002, says he was proud to have<br />
run for “a wonderful organisation like<br />
<strong>Ovacome</strong>, which offers its services free<br />
and can help sufferers, their family and<br />
friends, adopt a positive mental attitude”.<br />
Iain Whatley, a 34-year-old firefighter<br />
from Longworth in Oxfordshire,<br />
has likened the last two miles of the<br />
marathon to how he would imagine<br />
childbirth. Ian took up the challenge to<br />
remember his late mother Joy, who was<br />
diagnosed with ovarian cancer a month<br />
after his wedding in the summer of 2009.<br />
After treatment Joy retired to France<br />
with her husband, but faced a<br />
recurrence just over two years later. She<br />
died in December 2011, a month after<br />
Iain’s second child was born.<br />
It was when Iain hit the 22nd mile that<br />
this flooded back. “I thought about my<br />
mum, my family and how hard things<br />
had been and continue to be for others<br />
going through what we had,” says Iain,<br />
who raised £2,800.<br />
For Julie Caudle, a 52-year-old estate<br />
agency director on the Isle of Wight, it<br />
was her third<br />
marathon.<br />
Julie, who lost<br />
her mother to<br />
ovarian cancer<br />
six years ago,<br />
found training<br />
the hardest, but<br />
she finished in<br />
4:28, raising<br />
£1,412.<br />
Julie Caudle: jubilant.<br />
“I always did my<br />
long run on a Sunday which does have<br />
rather an impact on your social life, as<br />
you really need to be to bed early on a<br />
Saturday and are generally very tired on<br />
the Sunday.”<br />
Wearing the <strong>Ovacome</strong> T-shirt on<br />
the day helped. “The fact that the<br />
letters were so big meant everyone was<br />
shouting my name! I think my mum<br />
was watching over me to carry me<br />
through. I felt jubilation and pride as<br />
I was running around.”<br />
“I have to say my legs did ache<br />
afterwards, but nothing that a lovely<br />
meal and a huge glass of wine did not<br />
put right that evening!”<br />
Mark Varley from Birmingham was<br />
running in memory of his mother in law<br />
Christine, who died of ovarian cancer in<br />
2008 “blowing a hole” in his family’s life.<br />
Mark, a director of an import business,<br />
achieved a personal best at 3:29 and<br />
raised £1,700. But he says despite it<br />
being his fourth marathon, it did not<br />
feel any easier, with the last six miles<br />
being “a struggle of the mind”.<br />
12 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
fundraising<br />
Yinka McKay (pictured left in blue<br />
T-shirt), a trainee solicitor from Bethnal<br />
Green, made the headlines during her<br />
run, in which she raised £2,650.<br />
Her friend, Helen Clarke (also pictured<br />
left, behind Yinka in pink), who was<br />
famously late in starting the race, was<br />
in a different wave of runners and had<br />
been waiting to start with her.<br />
Yinka completed the marathon, her first,<br />
in 4:40, and said all was well until mile<br />
23 when she started to really struggle.<br />
“Luckily I knew that once I caught sight of<br />
Big Ben, I wasn’t too far away,” says Yinka.<br />
“Afterwards, I felt great. I couldn’t believe<br />
I had just completed the marathon.<br />
“Fortunately for me, I had lots of<br />
support from my partner and plenty of<br />
people to train with as I am a member<br />
of a local running group called Run<br />
Dem Crew.”<br />
Pip Lee-Woolf and<br />
Zara de Haldevang<br />
had an eventful<br />
time during their<br />
training. In the<br />
16 weeks before<br />
Pip Lee-Woolf: 4:54.<br />
the race, Zara had<br />
to unfortunately pull out with a viral<br />
chest and throat infection as well as<br />
two damaged IT bands and a damaged<br />
patella. Pip, despite being ill up until<br />
the event and also revising for his APC<br />
(Chartered Surveyor exam, which was<br />
five days after the marathon), pushed<br />
through and managed to finish in 4:54.<br />
They raised £4,073.<br />
<strong>Ovacome</strong> member, 51-year-old<br />
Wendy Johnson also had to back out<br />
on doctor’s orders. But despite the<br />
disappointment of suffering from a<br />
trapped nerve in her back, she still<br />
donated £1,000 to <strong>Ovacome</strong>.<br />
Having been diagnosed with early stage<br />
ovarian cancer 18 years ago, and then<br />
going on to have two children and a<br />
cancer free life, Wendy has a passion<br />
to raise awareness and funds for the<br />
charity. “I will really try hard to be<br />
ready for 2016,” says Wendy who lives<br />
in the Netherlands.<br />
Sixteen-year-old bags<br />
£781.35 for <strong>Ovacome</strong><br />
Sixteen year-old Zoe Adey raised £781.35 for <strong>Ovacome</strong> and a whole lot of<br />
awareness by packing bags at a supermarket with eight of her friends, her nineyear-old<br />
brother Daniel and her dad Steve.<br />
As she approached the year anniversary of her<br />
mother Helen’s death, Zoe wanted to keep her<br />
mother’s memory alive and give something back to<br />
<strong>Ovacome</strong>, which had helped her mother.<br />
The group packed bags at their local Sainsbury’s in<br />
Farlington, Hampshire, for six hours, which Zoe<br />
said “flew by” and gave her the chance to speak<br />
with lots of people about ovarian cancer.<br />
“My mum was supported by <strong>Ovacome</strong> as she could<br />
read other stories of women going through the same<br />
thing and know she wasn’t alone. I want to give<br />
something back,” says Zoe, who is now considering<br />
a 73-mile bicycle fundraiser for next year.<br />
Tweet success<br />
The power of social media should<br />
never be under-estimated. It was<br />
only after reading a Barry M tweet<br />
about <strong>Ovacome</strong>’s awareness month<br />
activity in March that 25-year-old<br />
Rachel Galton decided to fundraise for<br />
the charity.<br />
Rachel has no<br />
connection with<br />
ovarian cancer,<br />
but she wanted to<br />
get involved with<br />
<strong>Ovacome</strong> after Rachel and her mother<br />
reading about the Elaine: raised £538.<br />
help that it gives<br />
to women, their families and friends<br />
affected by the disease.<br />
“Sometimes you don’t need to be<br />
affected by something personally to do<br />
something to help others,” says Rachel.<br />
So, helped by her mother Elaine,<br />
the administrator from East London<br />
hired a church hall in Bow and held a<br />
fundraiser get together including a cake<br />
sale, a manicure table with treatments<br />
costing £4 a go, face painting and a<br />
raffle. Together with a JustGiving page<br />
she raised £538.<br />
Zoe with her dad Steve and brother Daniel.<br />
Rachael v horses in<br />
gruelling country run<br />
Rachael Thorn told her mother two<br />
days before she died that she would<br />
take part in the gruelling cross country<br />
Man v Horse Marathon, an annual race<br />
in Wales, which crosses hills, rivers and<br />
muddy bogs.<br />
In her mother’s<br />
memory, the 24-yearold<br />
Barnardo’s family<br />
support worker, has<br />
signed up for this<br />
June’s Llanwrtyd Wells<br />
race with her boyfriend<br />
Chris Parry, pitching<br />
their fitness against<br />
riders on horseback<br />
over the 35km.<br />
Rachael and<br />
boyfriend Chris:<br />
in it together.<br />
Rachael, from Caldicot in<br />
Monmouthshire, whose longest running<br />
competition has been a half marathon,<br />
says that the training has helped her<br />
cope with the grief of losing her mother.<br />
“I’ve also been able to cancel my gym<br />
membership,” she laughs.<br />
Visit https://www.justgiving.com/<br />
Rachael-Thorn to help Rachael hit her<br />
£2,000 target.<br />
Picture credit: The News Portsmouth/Malcolm Wells.<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 13
postbag<br />
Benefits battle<br />
My name is Esther Jury and I was diagnosed with ovarian cancer stage 1C in May 2014. I was lucky that I had a great GP,<br />
who referred me for a scan as soon as I told her I had abdominal pains.<br />
Of course, I hadn’t gone to the doctor when my other<br />
symptoms started, as like many others I put them down to<br />
having a new baby - bloated stomach<br />
and tiredness and being a gardener -<br />
lower lumbar backache.<br />
It wasn’t until the abdominal pains<br />
became really hard to ignore and<br />
I was getting sharp pains during<br />
intercourse and when emptying my<br />
bowels that I did go. I was told at the<br />
scan that there was a 10cm mass on<br />
one of my ovaries. It was then my<br />
battle started.<br />
It wasn’t with medical staff; they<br />
were all fantastic.<br />
Esther Jury with her daughter.<br />
No, my battles were with the<br />
Department of Work and Pensions, when I tried to make<br />
a claim for unemployment benefit. As a family we had<br />
no income as my husband and I had been working in<br />
partnership and although luckily we owned our home and<br />
didn’t have to worry about mortgage repayments, we needed<br />
to feed ourselves and our two children and had all the usual<br />
bills to pay.<br />
Don’t put off until tomorrow...<br />
After the initial shock of being diagnosed July last year with stage IV primary peritoneal cancer - a disease which is<br />
treated in the same way as ovarian cancer and has similar symptoms - I adopted a “let’s do this” attitude.<br />
This, along with my family and friends stroke before my diagnosis. We now<br />
being so amazing, helped me through to just want to get back out there and<br />
hearing the great news start really living life and experiencing<br />
in February that I was all it has to offer.<br />
clear (for now).<br />
Emma Kenyon: has<br />
set wedding date.<br />
I’m aged 43 and having<br />
this awful disease and<br />
my mortality put to<br />
question really woke<br />
me up. It made me see<br />
just how important life<br />
is and how I want to go<br />
out and live it the best<br />
way I can and with the<br />
people I love.<br />
We’ve had a tough few years with<br />
ill health. My partner had just had a<br />
We started with our new kitchen and<br />
garden, which we had put off for a long<br />
while, and we have had a couple of well<br />
deserved holidays in Devon. We’ve also<br />
drawn up a wish list including a trip up<br />
the Shard and Warner Bros Harry Potter<br />
studio tour scheduled in. We even have<br />
dinner booked at The Ritz!<br />
Enjoying time with friends and family<br />
is so important too, we have dates in<br />
the diary for family meals, spa days,<br />
dinner with friends and of course<br />
the pub!<br />
We didn’t have any critical illness insurance. I thought that<br />
it might take a few weeks to receive unemployment benefit.<br />
It took five months.<br />
I was repeatedly told that my form was the wrong<br />
type and that another one would be sent to me, then<br />
several months after completing and returning the<br />
correct form and chasing to find out why nothing had<br />
happened, they informed me that they needed to see<br />
my husband’s passport and that I needed to make an<br />
appointment at the local job centre. All this whilst<br />
I was supposed to be recovering from major surgery<br />
and then having chemotherapy!<br />
At no point was I told by a telephone advisor that<br />
I could get some emergency funds if necessary. I was<br />
extremely lucky to have family who helped during<br />
that time.<br />
I did write to my local MP about this and I have had a<br />
letter of apology from the minister responsible, which is of<br />
little comfort, as what I really want are some changes to the<br />
benefit application process to be put in place.<br />
I’d like to hear through <strong>Ovacome</strong> whether other readers have<br />
had a similar experience.<br />
Esther Jury, Norwich.<br />
Also, we finally set a date for our<br />
wedding after being together for<br />
15 years. It will be this November and<br />
our beautiful daughter Jamie-Leigh<br />
(who has been so strong and amazing<br />
throughout my illness, is helping us<br />
plan it). I hope to have some hair by<br />
then. If not Jamie-Leigh has said some<br />
double-sided sticky tape will do to hold<br />
the tiara on!<br />
Making new, happy and fun memories<br />
is what it’s all about for us moving<br />
forward. We don’t know what’s around<br />
the corner and I for one will not waste a<br />
second of the here and now.<br />
Emma Kenyon, Milton Keynes.<br />
14 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together
postbag<br />
line… From the frontline…<br />
It’s a ritual that I enjoy. Every<br />
year to mark Ovarian Cancer<br />
Awareness Month (OCAM)<br />
I have a pedicure. But not<br />
just any old pedi. I turn my<br />
toe nails teal to mark the<br />
month. When people<br />
comment on the<br />
varnish I’m able to tell<br />
them why I’ve picked<br />
the colour. I think it’s<br />
important to spread<br />
the message and be<br />
part of the national<br />
awareness campaign<br />
which hopefully will help<br />
many other women.<br />
Also, it’s a great way to celebrate being<br />
alive. It was in March 2012 that I was<br />
told that I had stage 3 ovarian cancer.<br />
Having a vibrant colour reminds me I’m<br />
still here.<br />
Since diagnosis I’ve had more than<br />
50 sessions of chemo. The most recent<br />
course ended in January. It left me<br />
exhausted. However, having a beauty<br />
treatment was one of the few things<br />
I could manage. It’s amazing how<br />
something so simple<br />
can make you feel so<br />
lovely.<br />
It’s not something<br />
I only do once a<br />
year. I like to have<br />
pedicures as often as<br />
I can. I’m sticking<br />
with the teal colour<br />
over the summer. It Helen’s teal toes.<br />
means that I’ll be<br />
continuing to raise awareness about<br />
this horrible disease. That also needs<br />
doing more than once a year.<br />
• Helen Fawkes is a BBC<br />
correspondent living with advanced<br />
ovarian cancer. She was first<br />
diagnosed 13 years ago. Follow her<br />
on Twitter @Helenfawkesuk or on<br />
her blog: helenfawkes.wordpress.com<br />
I get by with a<br />
little help from my<br />
friends, reiki, diet,<br />
granddaughter...<br />
I<br />
was diagnosed with stage 3 ovarian cancer in July 2004,<br />
which was a total shock as the doctors and I all thought<br />
I had Irritable Bowel Syndrome, which was getting worse.<br />
One of the hardest things then was telling my two boys. It was really difficult to get<br />
the right balance of honesty and optimism.<br />
The surgeon told me I had a 25% chance of getting to five years and here I am<br />
nearly 11 years later and planning lots of 60th birthday<br />
celebrations in November.<br />
I have had many recurrences and am currently on my<br />
sixth lot of chemo, but I have been lucky to be very fit<br />
and well between treatments and have endeavoured to<br />
live life to the full.<br />
This is what has worked for me:<br />
I have tried many complementary and alternative<br />
therapies over the years and believe that some have<br />
helped me be well and maybe prolonged my life.<br />
Particularly useful have been acupuncture, reflexology<br />
and reiki, which I’ve had regularly for many years now<br />
and helps me relax, feel nurtured and gives me energy.<br />
I have become fitter since diagnosis by exercising more,<br />
jogging, walking, swimming and going to yoga<br />
and tai chi classes with a very supportive group of Francesca Hannah: almost<br />
11 years since stage 3 diagnosis.<br />
women. I’m also fortunate in having some very<br />
supportive friends, family and neighbours and also a local cancer care centre<br />
called Beechwood and based in Stockport where I live, which provides free<br />
complementary therapies, counselling and lots more.<br />
I’ve tried various anti cancer diets including six months on the Gerson diet,<br />
which was hard, but I felt very cleansed and well even though my CA125 still<br />
kept rising, albeit slowly. Generally, I now eat a low sugar diet, lots of fruit and<br />
vegetables, organic where possible, lots of wholefoods, nuts, seeds, some chicken<br />
and fish and avoid most dairy. But I do allow myself some treats too.<br />
Also my love of nature has helped greatly and I’ve become a bit of a bird watcher.<br />
I also volunteer every week at The Donkey Sanctuary in Manchester, where I get<br />
lots of donkey cuddles.<br />
When I’m well, I travel a lot with my partner, Mark, and we have become big fans of<br />
cruises. Finally, one of the most important people who has helped me enormously to<br />
keep going with chemo when I’ve felt like giving up and who always puts a big smile<br />
on my face is my beautiful one-year-old granddaughter Lily.<br />
There is a lot more information on my website www.cancerselfcare.com<br />
Francesca Hannah, Stockport.<br />
it together<br />
Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 15
scrapbook<br />
Meet the trustees<br />
n the first of a new series introducing <strong>Ovacome</strong>’s<br />
Itrustees, our treasurer Simon Chantrey explains his<br />
involvement in the charity after losing his wife to a disease<br />
similar to ovarian cancer, primary peritoneal cancer.<br />
“Following my wife’s<br />
death I had wanted to do<br />
something to help women<br />
with ovarian cancer and<br />
their families. I had been<br />
married to Susanna for<br />
36 years and she had her<br />
60 th birthday in her last<br />
year, two and a half years<br />
after initial diagnosis.<br />
“I had been talking about<br />
becoming a regional<br />
ovarian cancer coordinator<br />
(a ROCC)<br />
Simon Chantrey with his grandchildren.<br />
for the charity, but at<br />
an induction meeting Noëline, who was <strong>Ovacome</strong>’s chair at<br />
the time, made a beeline towards me and almost immediately<br />
asked if I would be interested in the treasurer role. I’m still<br />
unsure how she knew I was an accountant.<br />
“It seemed a logical way to use my experience. I am a qualified<br />
chartered accountant, although my career had taken me in<br />
a more general financial direction in the city and elsewhere.<br />
Latterly, I became heavily involved in the financing of the<br />
early cable television industry in the UK and then acted as<br />
financial adviser to a range of smaller companies in helping<br />
them to grow. My workload ran down during my wife’s illness,<br />
so 2006 was my last full year.<br />
“I have a variety of interests, with golf a major consumer of<br />
time! I finished a year as captain of my golf club last May and<br />
was once its treasurer. I also play bridge and am an active theatre<br />
goer. I follow Formula One, cricket (I am a member of Surrey<br />
County Cricket Club at the Oval), golf and tennis. About six<br />
years ago I set myself a target of going to as many F1 circuits<br />
as possible and have been to 11 to date; this provides a nice<br />
centrepiece for holidays in lovely places.<br />
“The key is for me to help <strong>Ovacome</strong> succeed and grow in its<br />
role as a support network. This can be done by managing its<br />
finances as tightly as possible and providing trustees and staff<br />
with the financial information that can help them in their<br />
roles: typically taking a half day a week of my time.<br />
“I have two sons, a daughter and six grandchildren – ranging<br />
from age one to 11. They live quite near my home in Woking,<br />
Berkshire, so I get to see them quite regularly. I have a partner<br />
who had been a good friend of Susanna’s.<br />
On your<br />
marks.<br />
Get set. Bake!<br />
<strong>Summer</strong> is the perfect time to roll out the gingham table<br />
cloths, hang up the bunting and stage your own Mary<br />
Berry style bake off.<br />
<strong>Ovacome</strong>’s Big <strong>Ovacome</strong> Bake Off party packs were so<br />
popular last year that we decided to offer them again free to<br />
members for a second summer.<br />
Most people will want to ask competitors to bring along their<br />
bakes - to a village hall, fête or open garden - rather than<br />
make them on site.<br />
The packs, which include bunting, a winner’s certificate and<br />
a free T-towel to give away as a prize, provide a template to<br />
host a hassle-free event. It also has a favourite gluten free<br />
cake recipe from <strong>Ovacome</strong>’s patron, the actor, Jenny Agutter<br />
and also from celebrity chef Chris Horridge.<br />
The idea of the bake-offs is to charge entrants to take part<br />
and then to sell their cakes at the<br />
event: to provide a double income.<br />
Having different categories, helps<br />
to inspire and to get varying levels<br />
of talent involved. A children’s<br />
category can work well, as well as<br />
fairy cakes, a Victoria sponge and a<br />
showstopper.<br />
Happy baking!<br />
• For your free Big <strong>Ovacome</strong><br />
Bake Off party pack, contact s.vig@ovacome.org.uk<br />
Fundraising<br />
with a click<br />
If you would like to take part in fundraising, but don’t have<br />
the time or energy to train for a race, hold a bake off or<br />
other event, then why not consider sponsoring some of our<br />
supporters that do.<br />
Rebecca Watt, for example, is taking part in the Great<br />
North Run half marathon on 13 September. Her mother<br />
has been treated for ovarian cancer and she wants to raise<br />
£100 to help <strong>Ovacome</strong> with its work. This is her second half<br />
marathon and she hopes to better her time in this one.<br />
Her JustGiving page link is: www.justgiving.com/Beccawatt<br />
Many of our fundraisers on pages 12 and 13 will have<br />
JustGiving pages which are easy to Google. So if you like any<br />
of their stories why not top up their fundraising before their<br />
pages close.<br />
16 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together