currie`s favour

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