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Phone Ovacome’s Freephone support line on 0800 008 7054
SEASON’S GREETINGS
Ovacome’s 2016 Christmas cards are now available with four traditional
and modern designs to choose from.
Proud Robin
Message inside reads:
‘Merry Christmas and a
Happy New Year’ .
Price: £3.95
Size: 127mm x 127mm
Adoration of the
Shepherds
Message inside reads:
‘Merry Christmas and a
Happy New Year’ .
Price: £3.95
Size: 127mm x 127mm
Festive Dove
Message inside reads:
‘Merry Christmas and a
Happy New Year’ .
Price: £3.95
Size: 120mm x 120mm
Crafty Christmas
Message inside reads:
‘Merry Christmas and a
Happy New Year’ .
Price: £3.95
Size: 120mm by 120mm
16
ovarian cancer charity
www.ovacome.org.uk
Freephone helpline:
0800 008 7054
Each one is printed on high quality card, with white
envelopes, in packs of 10, which retail at £3.95. On
the back of each card it is clearly marked that it is
sold in aid of Ovacome.
All money raised from the sale of these cards will go
towards supporting women with ovarian cancer, so
it would be amazing to receive as many orders from
you as possible now.
Order forms are loose inside this newsletter.
How long will the cards take
to arrive?
We aim to despatch all orders within 48 hours.
This is dependent upon stock availability and so
we ask that you allow up to 14 days for your order
to arrive. You will receive an email when your
order is despatched from our warehouse and
this will contain details of the delivery method.
For personalised cards, please allow 21 days for
delivery.
What is the latest date for
orders?
To ensure that you receive your cards in time for
Christmas we recommend that you place your
order before December 9.
How can I pay for my order?
Please make cheques and postal orders payable
to ‘Ovacome’ and return to: Ovacome, Christmas
Cards 52 – 54 Featherstone Street London EC1Y
8RT. If you would like to pay by credit/debit card
please call our office 020 7299 6651.
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
YEARS OF SUPPORTING
THOSE AFFECTED BY
OVARIAN CANCER
Autumn 2016
Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
CONTENTS
3
4
6
8
10
16
Twenty years ago, sitting at
her kitchen table, Ovacome
founder Sarah Dickinson
set about creating a support
group for everyone affected
by ovarian cancer - sufferers,
families and friends.
Ovacome invites you to take part in
its latest census.
Where it all started: Read
Ovacome founder Sarah
Dickinson’s original letter in
Good Housekeeping magazine.
Twenty years and counting:
Ovacome members share their
stories.
Say goodbye to Ovacome’s support
line nurse Ruth Payne who takes
retirement after 20 years.
Monitoring for a relapse sometimes
does more harm than good.
Ovacome’s Christmas cards are on
sale today.
Ovacome’s Freephone support line number is
0800 008 7054
CONTACT
Freephone support line:
0800 008 7054
020 7299 6650
[email protected]
Volunteer and information
manager: Ruth Grigg:
020 7299 6653
[email protected]
Fundraising manager: Lee Priestly:
020 7299 6651.
[email protected]
Chief executive: Louise Bayne
Support services manager:
Anna Hudson
020 7299 6650
[email protected]
Office manager: Sonia Vig
Ovacome has now moved offices to:
52-54 Featherstone Street, London
EC1Y 8RT
Office hours:
Monday to Friday 10am – 5pm.
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.
Having been diagnosed with the disease herself,
pregnant with her daughter Michèle, she knew only
too well how alone it could make you feel, despite
having a loving husband and wonderful friends.
At the time there was no ovarian cancer charity
nor such widespread access to the internet to
learn about the disease. And it was clear when
Good Housekeeping magazine published a letter
from Sarah talking about her plans to set up a
support group that she was meeting a great need
(see page 4).
Two decades later and Ovacome has held onto
the same ethos, with many of its staff having been
affected personally or indirectly by ovarian cancer.
Her husband Adrian remains a patron alongside
actress Jenny Agutter who came on board after
reading Sarah’s letter.
While Ovacome’s spirit remains unchanged it has
grown into a charity which impacts top level policy,
funds research into new treatments for the disease,
raises national awareness and teaches the next
generation of GPs about its symptoms.
Perhaps most importantly though Ovacome is
established as the heart of the community for
women with ovarian cancer, with its Freephone
support line, online members’ forum and annual
meet up. Sarah’s family should be so proud.
Louise Bayne, Ovacome chief executive.
© 2016 Ovacome
52-54 Featherstone Street, London
EC1Y 8RT
Designed and produced by Popcorn
Design, www.popcorndesign.co.uk.
Printed by Circularising Ltd.
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.
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,
Noëline Young and Lesley Sage.
© 2016 Ovacome
A YEAR TO REMEMBER
Ovacome has a series of special anniversary activities
planned for the next 12 months to mark its 20 years.
First up was its celebratory bike ride this autumn
replicating its inaugural Richmond to Windsor 29 mile
event, where founder Sarah Dickinson launched the
charity, with patron Jenny Agutter.
Tens of supporters turned up for this year’s landmark
occasion, including Sarah Orme and Andrew Treglown in
memory of Jennifer Foran, Deirdre Dineen, in memory of
the late Brid Carr, Hattie Stephenson, Bridget Hamilton,
Lisa Ebdon and Suzanne Cornish.
Celebrating (left to
right): Louise Bayne,
Ruth Grigg,
Stephanie White and
Lissa Napolitano.
From Apricot, the
fashion retailer
which designs a
dress for Ovacome
to sell during
awareness month for the charity, there was Stephanie
White, with her mother Lissa Napolitano, Simona
Ciuckaite and her friend Karolina Grigaityte.
They joined Ovacome chair Cathy Hughes and staff
Louise Bayne, Ruth Payne, Ruth Grigg, Lee Priestly and
Juliet Morrison with family members, including Louise
Bayne’s husband Duncan and Ruth Payne’s husband
Martyn, who completed the harder 37 mile course,
alongside Ovacome member Jackie Rose.
The riders braved the rain, a runaway bike wheel, failed
brakes, youngsters mischievously trying to misdirect
cyclists by turning around signposts, and hills which
would have brought out a sweat in Sir Bradley Wiggins.
It was a momentus day for the charity and everyone who
took part had a sense of achievement. Sarah Orme, who
was marking what would have been the 40th birthday
this year for her friend who died aged 27 in 2004, found
being involved cathartic. “I felt it was important to mark
her birthday in some way,” she says.
“I was very tired the afternoon we finished, but very
pleased with myself for having completed it, especially as
my brakes rattled loose during the last three miles and
weren’t working properly,” she says.
Part of team Ovacome (left to right): Duncan Bayne, Martyn Payne,
Jackie Rose, Bridget Hamilton, Lisa Ebdon, Suzanne Cornish and
Juliet Morrison.
of initiatives planned, including a census of its members
(see below), an exciting campaign for awareness month
with special keepsake merchandise and its biggest push
for its Teal Tips nail polish to date.
Vital statistics
This autumn Ovacome will invite its members
to take part in a 15 minute questionnaire, the
results of which will be used by the charity to
help improve services and treatment for women
with ovarian cancer.
Members will be asked to take part in the survey
of over 40 questions by e-mail and Ovacome’s
social media networks at the beginning of
November, with the closing date for entries
being 1 January 2017.
The idea is for Ovacome to measure women’s
experiences of diagnosis and treatment across
the UK and compare the results with the
charity’s groundbreaking survey of 2006, says
chief executive Louise Bayne.
“Our wonderful 2006 survey remains the most
thorough of its kind for ovarian cancer and by
getting the results updated this year we will
be able to use the information to shape our
advocacy when talking to the government
and pharmaceutical companies, to inform
our services and to help us understand the
community’s priorities,” says Louise.
“There are already plans for a parliamentary
report to be produced on the back of the results
and our independent researcher Annie Gilbert
will be presenting the findings at our Members’
Day in March.” (See page 9).
As part of its 20 year celebrations, Ovacome has a series
2
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
Ovacome news
3
Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
WHERE IT ALL BEGAN
WHAT A 20 YEARS IT HAS BEEN
This is the
heartfelt
letter that was
published in
Good
Housekeeping
magazine in
February 1996
and led to the
formation of
Ovacome. Such
was the reaction
to the story of
our founder
Sarah Dickinson
that she knew
there was a need
for a support
group for women
with ovarian
cancer to ‘talk,
help each other
and know they
were not alone.’
Ovacome’s inaugural bike
ride in 1996 with (left to
right) Professor Martin Gore,
Ovacome founder Sarah
Dickinson, patron Jenny Agutter
and supporter Kazia Pelka.
embraced the internet revolution and has innovated
with a private forum for members to support each
other online with the MyOvacome site, put together
with HealthUnlocked.
It was the year that the
Spice Girls hit number one
with Wannabe. The year
that Dolly the sheep - the
first cloned mammal - was
born. And the year that
Fergie and Prince Andrew
divorced. 1996 was also
the year that Ovacome
was created: the first UK
charity helping women and their family, friends and carers
affected by ovarian cancer.
During that time Ovacome has grown from a seed of an
idea planted by our founder Sarah Dickinson on the pages
of Good Housekeeping (see page 4), to today’s team of six
staff punching well above their weight from offices near to
London’s Old Street tube.
The well regarded team influences policy on ovarian cancer
treatment, raises awareness at national level, supports
thousands of women, their families, friends and carers and
most recently has become involved in researching for new
treatments.
Appointing a research fellow - Dr Sarah Leonard in 2015 was among the major milestones for the charity. Overseen
by Ovacome’s chief medical adviser Professor Sean Kehoe
at the University of Birmingham, Sarah investigates
aspects of tumour sensitivity to therapies along with trying
to understand the impact treatment has on the tumour
during actual therapy. This is an area, says Sean, which
is not receiving sufficient attention. “All research costs
money and presently there is a need to employ a laboratory
technician to support the research,” he says. “Any donations
are most welcome and can be sent via Ovacome.”
Other landmarks for the charity include:
Reproduced
by permission
of Good
Housekeeping.
4
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
The first Members’ Day, which was held at Alton Towers in 1996. This has become an annual occasion with many attending every year.
The Ovacome website first made an appearance in
autumn 1997. It took a while for the team to acclimatise under the very patient guidance of patron Adrian Dickinson. Ovacome has since Professor Sean Kehoe joined the charity’s trustee
board over 10 years ago, having been invited by chief
executive Louise Bayne. Sean says: “My reason for
joining was not just the honour in being asked, but also
because of what Ovacome stood for. “This charity is
the oldest and indeed the only ovarian cancer charity
in the UK with a specific mandate to support women
diagnosed with ovarian cancer along with their families,”
he says. “It provides direct access, support and advice
for all and has been successful now for 20 years.”
In 2010 Ovacome launched the BEAT ovarian cancer
campaign highlighting the main symptoms of the
disease. This has become the cornerstone of
Ovacome’s awareness work and has led to the
introduction of an ‘Adopt A’ scheme, in which we ask
members to choose a public place to keep topped
up with BEAT material. It is also the backbone of the
charity’s Teal Tips awareness work in which Ovacome
asks women to wear teal coloured nail polish to act as a
conversation opener about the symptoms of the disease.
Being the oldest ovarian cancer charity, Ovacome has
seen the arrival of several other similar organisations, which it has started to work collaboratively with. World Ovarian Cancer Day on May 8 every year - has been a
joint venture initiative with charities in the UK and overseas since 2013. Ovacome also worked with the other UK charities to create the 60-page ‘A younger
woman’s guide to ovarian cancer’, which was highly
commended for a recent award. For younger women,
diagnosed under the age of 45, Ovacome holds regular
get together meetings.
In 2013 the family of a young member who died of
ovarian cancer, Lisa Jayne Clark, funded a stepchanging awareness scheme which Ovacome brought
to the UK. Survivors Teaching Students empowers
Ovacome members to share their ovarian cancer story
with medical students.
Last year we appointed our first fundraising manager
Lee Priestly, armed with experience in raising money
to secure projects in the arts. She would love to help
you with fundraising ideas if you contact her on
020 7299 6651 or e-mail [email protected]
Ovacome news
5
Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
20 YEARS AND COUNTING
To celebrate Ovacome’s 20 year anniversary we talk
to women who were given a diagnosis in the same year
that our founder Sarah Dickinson set about forming a
support group to help them and tens of thousands of
women after.
Mary Mackenzie, aged 67,
from Bonnyrigg, near Edinburgh
Mary Mackenzie: ‘Ovacome has
been a great comfort’.
“I joined Ovacome very early
on. I received a leaflet at a
check-up probably 15 years
ago and have looked forward
to receiving the newsletter
ever since, which I find both comforting and informative.
“I had a hysterectomy in 1987 after pre cancerous cells
were found in my womb, and was later diagnosed with
clear cell ovarian cancer in January 1996 after many
visits to my GP and hospital tests. I had my ovaries,
omentum, etc, removed in 1996. This was followed by
four chemo sessions of carboplatin.
“I continued with a CA125 annual test for 14 years. My
CA125 levels started to rise again in 2010 from 28 to
140 over two years, but the CT scan showed nothing. It
then went back to my normal 28 within a month. During
that time I phoned Ovacome and they put my mind at
rest. Being able to chat with someone was the main help
the charity has given me.
Linda Chapman, aged 66,
Storrington, West Sussex
Linda Chapman: a scare in 2011
proved to be nothing.
“It took me seven or eight
years after being diagnosed
with ovarian cancer to wake
up and not think about this
first thing.
“I was aged 47 when I was told I had stage 1c in
December 1996, after being given a hysterectomy,
oophorectomy and omentectomy. This was followed by
eight cycles of carboplatin.
“I initially heard about Ovacome after my treatment in
the summer of 1997 when someone gave me a copy of
its newsletter and it was a huge relief to read about other
people in a similar position and to see that there was
support available.
“It meant that I no longer felt alone and that there were
other people feeling like I was. At the time there was very
little information readily available on ovarian cancer:
you couldn’t then just type into an iPad and see all the
resources.
“I’ve always liked the balance of things in the newsletter,
between information and properly researched facts
supported by medical advice and it did not shy away from
the awful reality for some.
“In 2014 I started to pass blood in my faeces. Many
colonoscopies followed and a polyp was found, but it
looked so unusual they operated and removed a large
part of my bowel. The polyp baffled the bowel and
ovarian oncologists. Eventually they decided it was clear
cell ovarian cancer based on endometriosis. I was given
six sessions of carboplatin and taxol.
“In the early stages I became quite involved in Ovacome,
becoming what was then a ‘Phone A Friend’ co-ordinator.
When I did the training for this I shared a room with Ruth
Payne and we have kept in touch on and off over the
years. I now check into the online members’ forum - the
modern version of Phone A Friend - from time to time to
see what’s going on.
“I have had the most wonderful care from all staff at the
Western General Hospital in Edinburgh. In particular
Dr Melanie McKean, my oncologist, whom I have known
now for some time. I am now on six monthly checkups
and appear to be doing well. Life is back to normal once
again and I rarely think about all that has gone before.
“I held a fundraiser in Surrey where I was living and I
met the charity’s Louise Bayne who came along. She was
expecting her daughter and had a little boy at the time.
We had a ‘colour analysis worker’ come along, dressing
four women in different colours and talking about how
those shades worked for them. There were clothes for
sale during the evening and we raised £1,000.
“I only wish that all ovarian patients were as lucky as I
have been. Once again thank you all for the hard work of
the Ovacome team, you have been a great support.”
6
“I had a bit of a scare in 2011 when I had some symptoms
which made me wonder if my cancer was recurring.
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
However, I had tests and saw oncologists and there was
thankfully nothing.
“It’s nice to know that Ovacome is always there and has
absolutely gone from strength to strength. At 20 years
of age it is a respected charity which has a voice in the
medical world, lobbies at government level and still
supports women diagnosed with ovarian cancer, while
raising awareness for others.”
Chris Perry, aged 69,
Seaford, East Sussex
Chris Perry: ‘I feel so lucky to have
reached 20 year milestone.’
“I was diagnosed with stage
2b ovarian cancer in March
1996. I was very fortunate in
that I had an excellent GP who
realised that my symptoms
needed further investigation and referred me to Bedford
Hospital that day for a scan. “Within three weeks I had undergone surgery and had
started a six month course of carboplatin chemotherapy. I
feel very lucky to have reached a 20 year milestone.
“Thanks to Sarah Dickinson, Ovacome has been there for
me since I joined in 1997. “When I was first diagnosed there didn’t seem to be any
help available to me other than from my medical team.
But then a friend said she had read an article in Good
Housekeeping (see page 4) about somebody setting up a
support group. It was Ovacome’s founder Sarah Dickinson.
I got hold of the article and made contact with and joined
Ovacome.
“At the time we had moved to Bedfordshire and all my
family and friends were in Lancashire or Sussex. It was
reassuring therefore to know that if I ever needed to know
or find out anything Ovacome would be there to help.
“I went to the charity’s first Members’ Day which was
held at Alton Towers. I also got involved in the regional
telephone service, phoning members in my area to see if
they wanted to keep in touch as a local group. One or two
people did keep in regular contact.
“I also helped Ruth Payne on a Barts stand many years ago.
Being involved has helped me.
“What the charity has achieved in 20 years due to the hard
work and commitment of the committee and members is
outstanding. Well done Ovacome and thank you!”
Lynda Cook, 66,
Wilmington near Dartford
Mike and Lynda Cook: ‘We like to
continue supporting Ovacome.’
“I still get emotional looking
back to when I was diagnosed
with ovarian cancer and I really
feel for those who are starting
this journey.
“I was 46 when diagnosed. I knew something was wrong.
The eight months before I was having on and off stomach
pain which I’d convince myself was because of something I’d
eaten. I kept making excuses, and about the weight around
my tummy. Then I began heamorraging outside my period
and was getting increasingly tired and latterly breathless.
“But when I went to my GP she examined me and said that
it was my age. My husband was wonderful and insisted that
I was given further investigation. I’m not one to make a fuss,
having not been to the doctor for 10 years before. My own
mother had died of ovarian cancer three years prior and I
said to my husband ‘I know something is wrong’.
“After various tests and a terrible experience at my local
hospital a nurse friend found out that I could be seen at the
Royal Marsden on London’s Fulham Road. I had eight hours
of surgery and was overseen for the next five years by the
most amazing Mr Barton.
“It was here that I found out about Ovacome’s founder
Sarah Dickinson. There was a note from her pinned on the
wall saying she was setting up a support group. I spoke to
her several times on the phone, comparing notes on how
we were getting on.
“I never met Sarah, but I also spoke to her mother in law on
the phone who near the end said she had gone for a walk
and that things weren’t very good.
“I never needed chemotherapy but was told to use HRT
patches. All was fine until 10 years ago when I had terrible
pains. I was told the pain was coming from adhesions
caused by the surgery. I really thought the cancer had
returned. Two years later the pains started again and it was
the same problem.
“I try to do my bit for Ovacome as it is still so important
to me. I give one copy of the newsletter to my GP and the
other to a neighbour, a nurse: not before I’ve read it myself.
“I’ve sent Ovacome little bits and pieces. They published an
HRT cake recipe I sent once for the newsletter and I’ve sent
in money for some plants I sold. I like to buy things from
them too like Christmas cards.”
Ovacome feature
7
Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
SAY HELLO, WAVE GOODBYE
MAKE IT A DATE
Ruth Payne (right),
Ovacome’s much loved
support line nurse, is
leaving the charity after
20 years. Ruth is taking
retirement, to enjoy her
new role as a grandmother
among other things, but
members will be pleased
to learn from her here that
she is staying involved.
“It can also help to say that I know of women who have
been diagnosed with ovarian stage 3 or 4 who have been
doing really well years after being diagnosed. “In February 1996 I read Sarah Dickinson’s Good
Housekeeping article (see page 4) about her experience
of having ovarian cancer and was very moved by it, not
realising how significant it would be for me. Four months
later I was diagnosed with early stage ovarian cancer.
“Ovacome has achieved so much in its 20 years and I feel
privileged to have been part of that and the opportunities
it has offered: including being interviewed for BBC
News, attending events and speaking at functions and,
of course, meeting and speaking to the many truly
inspirational women I have been in contact with.”
“After recovering from surgery and chemotherapy –
during which I attended the official launch of Ovacome
with the cycle ride that ended in Windsor – I got in touch
with Sarah and offered to help. As a practice nurse I was
keen to spread awareness amongst my colleagues, but also
to help support others affected by the disease.
“Ovacome didn’t have a dedicated office then and
volunteers would take turns in taking phone calls. In
2000 Ovacome’s first office opened in an old lab in
St Bartholomew’s Hospital. Boxes of fact sheets and
newsletters were stacked up on old lab tops.
“We’ve had seven moves since them, including a stint
sharing offices with The Eve Appeal and our recent
relocation near to Old Street tube.
“Over the years the thing I have enjoyed most has been
talking to the probably thousands of women, families,
carers and others supporting them through some of the
most challenging times.
“Often people use the support line to unpack what they
have been told at hospital, or to explore their options.
Sometimes people have been worried by symptoms
they are experiencing – especially if there is something
in the media about ovarian cancer. Often they want
encouragement as it can be difficult to think about the
future when faced with an ovarian cancer diagnosis. “I don’t often talk about my experience – although some
people pick up on it. But sometimes if a person’s situation
seems similar to mine I might suggest if it would help
to know that I was in a similar situation 20 years ago. I
remember one husband who broke down in tears in relief.
8
“I have also really enjoyed raising awareness of ovarian
cancer and being involved in the younger women’s
support group that Ovacome helped set up around six
years ago, with Maggie’s Centres, for those diagnosed
under the age of 45.
“I will continue to be involved with the younger women’s
group, as well as speaking at Survivors Teaching Students
events and generally lending a hand.
INTRODUCING
ANNA HUDSON
Anna Hudson: has a help
centre/charity background.
Ovacome looks forward to welcoming you at its
Members’ Day, which is for the second year running
being held during Ovarian Cancer Awareness Month in
March 2017, and again in London.
For those members who cannot make the event, the
speakers’ talks will be live streamed and available for
everyone to view on Ovacome’s YouTube Channel search Ovacome Charity in YouTube.
Member’s Day is a free event which gives participants
a chance to catch up on the newest developments in
treating the disease and to get to know Ovacome staff
and other people affected by the disease. It is a friendly
day providing members with support and knowledge and
a complimentary buffet lunch and refreshments.
Members unable to be there on the day can also interact
by asking questions on Twitter and live tweeting us using
the hashtag #MD2017. And the presentations will also
be available to watch afterwards on YouTube.
Most of the speakers are still to be decided upon for the
event, which will take place on Saturday March 4 2017,
from 10.30am until 4.30pm, at the St Luke’s Community
Centre, near to Old Street tube, at 90 Central Street,
London EC1V 8AJ.
Annie Gilbert: will outline
priorities in ovarian cancer care.
But independent
researcher Annie Gilbert
has confirmed that she will
be giving a presentation on
the findings of Ovacome’s
2016 patient survey
outlining the main areas it
has identified where improvements are needed in ovarian
cancer treatment and diagnosis. (See page 3).
Anna Hudson is joining Ovacome as support
services manager. Anna lives in London and is
trained as an occupational therapist. The majority
of her work has been in cancer or palliative care
services, including local and national charities.
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
Notice of Ovacome’s AGM
The Ovacome Annual General Meeting (AGM) will be
held on Saturday March 4 2017.
Only members of Ovacome are entitled to attend and vote
at the meeting and notice of attendance must be given at
least five days before the meeting. Any motions which are
to be raised must be made by members of Ovacome in
writing together with a seconder, who is another member
of the charity and must be in the hands of the chair of
trustees at least 14 days before the AGM.
The AGM will be held after Members’ Day at St Luke’s
Community Centre, 90 Central Street, London EC1V 8AJ.
If you are an Ovacome member and would like to attend
please contact the office on 020 7299 6654.
Birthday gongs
We would like to
congratulate two visionaries
who have helped many
women diagnosed with
ovarian cancer.
Since 2007 she has worked in PALS, patient
information and complaints, staffing a help centre
and later managing the service, with some study
time out to indulge in her love of literature!
Anna says she is excited to join Ovacome:
“My new job combines supporting people
affected by ovarian cancer in an immediate way,
alongside larger-scale campaigning and research
promotion. I’m really looking forward to joining
the team and contributing to the excellent work
of the charity.”
To book a place please contact the office on 020 7299
6654 or email [email protected] Everyone is
very welcome to bring along a guest.
Louise Bayne (far right) was delighted to receive a
£36,595.33 cheque from Apricot’s Philip Chaimo for money
raised during awareness month. The fashion retailer designs
a dress for the charity every awareness month, thanks to
member Adele Sewell, also pictured. The outstanding figure
was raised primarily from sales of the dress, but also by
selling Barry M Teal Tips nail varnish in its stores.
In the latest Queen’s Birthday Honours,
Professor Martin Gore (pictured above),
consultant medical oncologist, who has been
involved with Ovacome since its inception, has
been awarded a CBE for services to oncology.
And Dr Anna Campbell, who has researched the
physical and psychological benefits of staying
active after a cancer diagnosis, as a director of
CanRehab, has been given an MBE.
Ovacome and ovarian cancer news
9
Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
THE NUMBERS GAME
Benefits of monitoring?
Dr Marcia Hall
There’s been a lot of questions on Ovacome’s online
forum recently about whether it’s a good idea to
ask for regular CA125 blood tests to monitor for an
ovarian cancer relapse. Dr Marcia Hall, consultant
in medical oncology at the Mount Vernon Cancer
Centre, answers some of your questions.
What is CA125 testing?
CA125 is a protein that is found in blood and when its
levels rise it can be an indicator of ovarian cancer or a
recurrence of the disease. A small sample of blood is
taken from the arm and sent to a lab where a
simple test will measure the level of CA125 in the
blood sample.
For women who have been treated for ovarian cancer
CA125 levels can start rising months or even years before
there are any other signs of the cancer coming back.
But research shows that the best time to treat an ovarian
cancer recurrence is when any symptoms cause women
to feel unwell, because starting treatment earlier does not
help you live longer. And so CA125 blood tests at each
follow-up appointment are not imperative.
CA125 monitoring can help in planning of holidays and
special events, so that treatment can be arranged before
or after.
When should women worry?
Disadvantages of monitoring?
What is your advice?
However, the potential benefits of regular CA125 testing
have to be weighed against the OVO5 trial showing
that women who were treated with chemotherapy on
the basis of the CA125 results alone had an extra whole
course (six cycles) of treatment than patients who waited
for symptoms.
To women who are offered CA125 testing in routine
follow-ups post treatment I would tell them to consider
it carefully and think through how they would react if
levels went up – or how they would feel if they weren’t
having the tests and simply relying on symptoms. We are
all different.
The OVO5 trial, involving 1,400 women, found that
women who were treated as soon as their blood showed
an abnormally high level of CA125 had chemotherapy
five months earlier than those who were treated later.
However, they did not live any longer than women who
were treated later when they had symptoms of cancer, or
when doctors could see other signs that their cancer had
come back.
Finally, I’d say to consider the scenario that their CA125
has consistently risen, indicating that it is very likely that
their ovarian cancer has come back, but the doctors
are continuing to watch and not offer treatment (as
it is unlikely to help). This is theoretically justified, but
psychologically can be very difficult for many patients
and their relatives.
It was also found that women who were treated as soon
as their blood showed an abnormally high level of CA125
needed re-treatment for the second relapse of their
ovarian cancer five months earlier. Starting treatment
earlier did not improve women’s quality of life either.
My views are different on CA125 testing during
chemo, as we are enthusiastic about reductions
in CA125 which generally indicates a response to
treatment. But again I try to reinforce that even for this
use it is a crude corroborative indicator. The fact that a
patient’s symptoms are better is much more accurate
and important.
So really using CA125 in this way may be actually
harmful in terms of mental and physical health.
Are CA125 results accurate?
There is no right or wrong answer to this. Some women
will find it reassuring to be monitored for a relapse at
every clinical visit, for others it would cause unnecessary
sleepless nights prior to appointments.
The other thing to remember is that CA125 results
are not entirely accurate. Women can occasionally
have heightened CA125 levels even if their ovarian
cancer is still in remission i.e. they are not having a
recurrence. This can be caused, for example, by some
sort of peritoneal irritation – eg abdominal surgery,
infection in the abdominal cavity somewhere or residual
endometriosis (albeit rare).
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The number of the CA125 result is not what should be
focused on. Anything under 35 is normal – although this
only applies to 95% of the population. There are a few
women whose normal level is 50ish. Equally, there are
women whose CA125 rises within the normal range
indicating, together with symptoms, a likely recurrence –
for example, six rising to 12 then to 22.
Trials that patients kindly engage with require us to
measure the CA125 to understand how long patients
having that treatment might be in remission - not
perhaps really meaningful for the patients individually,
but occasionally helpful comparatively across different
trials and treatment types.
To monitor or not?
There are pros and cons either way. Although the OVO5
trial found no advantage in long-term prognosis in
treating a patient for an ovarian cancer recurrence
before the woman had symptoms, there are other
benefits of having an early indication of whether the
cancer has returned.
What is normal?
Conversely, a normal CA125 does not necessarily
guarantee there is no cancer back: it is just an indicator.
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
Women should only be concerned when they have
symptoms as well as a rising CA125. The CA125 results
need to be treated as corroborative evidence - as one
part in the diagnosis jigsaw.
eight hours, which is ‘colicky’, then you should let your
medical team know. (See box below for symptoms to
watch out for).
• Marcia Hall MB BS PhD FRCP is a consultant in
medical oncology at the Mount Vernon Cancer Centre
and an Honorary Senior Lecturer at Brunel University.
Symptoms to look out for
which could indicate an
ovarian cancer recurrence
• Abdominal pain lasting more than four to eight hours, especially if it is ‘colicky’
or intermittent.
• Abdominal swelling or feeling a lump.
• Change in bowel habit lasting more than a few days without any cause, such as going on holiday or a change of diet.
• Needing to pass urine more often or new unintentional leaking.
• Nausea, vomiting, diarrhoea, constipation or loss of appetite that cannot be attributed to food poisoning or community infection.
• Vaginal or rectal bleeding.
• Loss of appetite or weight.
•
What should I do if I get any symptoms?
Cancer is difficult to forget. Once you have finished
treatment, you are likely to be more aware of your body
and may notice even small changes in how you feel from
day to day.
If you find you become anxious when you have aches
and pains, coughs and colds, remember these are not
necessarily linked to the cancer coming back.
A feeling of abdominal bloating (especially
on waking in the morning or after only a
small meal) that lasts for more than two to three days.
The above symptoms might indicate a
recurrence, although they might have less
sinister causes. If a woman develops these
symptoms after being treated for ovarian
cancer a scan and a CA125 blood test will be
offered to establish if the cancer has actually
returned.
This feature was reviewed by
Ros Glasspool, consultant
medical oncologist, at the
Beatson West of Scotland
Cancer Centre.
However if symptoms do not go away or you have
any symptoms associated with ovarian cancer such as
abdominal swelling or pain lasting more than four to
Ask the dr
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Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
CUTTING THE GRASS CAN WAIT
M
y name is Tracey Gleed and I
am 53 years old. I am a mother
of two grown up children and work
as a primary school teacher. In
January 2016 I was diagnosed with
primary peritoneal cancer. [It is a
rare cancer that starts in the layer
of tissue that lines the inside of the
abdomen called the peritoneum and
is treated in exactly the same way as
ovarian cancer].
I received the usual treatment of six lines of chemotherapy and major
debulking surgery. My scans currently show no evidence of disease. But
my world was turned upside down and I cannot express the emotions I
went through. Some of this distress was because I felt alone because no
one had heard of my form of cancer.
I remained in a state of distress for some weeks but several events
made me turn my mindset around. My treatment plan gave me a sense
of positivity. Something was being done and I held on to the belief that I
was going to win this battle.
Also my son got engaged announcing that he wanted his mum at his
wedding; a sentence that filled me with love but sadness. He had an
engagement party and I spent the whole time considering that I would
not be at his wedding. The next day I realised that whilst I had spent
the whole time worrying about something that may never happen I had
spoilt what would have been a very happy day. From that moment on
I have viewed everything differently. I live for the day and enjoy it as
much as I can. Nobody at that party knows for sure that they will be at
the wedding.
I have days harbouring on negative thoughts and I hate those days. I
view my journey as a tunnel and when I am at the bottom of the tunnel it
is far worse to bear than the days that I am at the top. I’ve also realised
that when I have really bad days those feelings of anxiety do not last.
I have recently returned to work teaching mornings only. I am proud
that I returned only 26 days after my last chemotherapy but I wanted
to get back to a ‘normal’ life. It has been tough but definitely kept me
positive. I was overwhelmed to begin with and conscious that I looked
different in my wig. I was certainly taught a lesson when I rather
accusingly asked one pupil why he was staring at me. His reply was, “It’s
because I’m so pleased to see you Mrs Gleed.”
I do not know if or when my disease will return. I have changed as a
person. I do not get so stressed any more over silly things such as the
grass needing cutting. I have two holidays booked before Christmas.
Having things to look forward to and making memories are the
important things now.
Tracey Gleed,
Ashingdon, Essex.
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BUILDING A FUTURE 20 YEARS AFTER OVARIAN CANCER
From the frontline
D
avid and I knew at the beginning of 1996 that
the year would be life changing, but did not
know how dramatic it would turn out to be. Helen Fawkes is a BBC correspondent living
with advanced ovarian cancer. She was
originally diagnosed nearly 15 years ago.
Follow her on Twitter @Helenfawkesuk or on
her blog: helenfawkes.wordpress.com
When your life is totally and utterly
shaken up by this horrible disease you
often find yourself wishing that things
would just go back to normal. You long
to go back to BC - ‘Before Cancer’.
But nothing is ever the same again, no
matter how hard you try. Right now I’m enjoying some time
without intensive treatment. What
I’d really love is to be able to do the
same stuff I could when I was well. Go
to the gym, dance, play netball and so
much more. It would be wonderful to
have the oomph to get up and do some
exercise.
But instead I spend a lot more time
than I’d like stuck on the sofa. I’ve
been totally wiped out by the almost
continuous chemo which I’ve had since
my diagnosis. I get out of breath easily
and can’t walk that far. The biggest
side effect that I suffer from is chronic
fatigue. It means I have to be very
careful with what I do with my small
amount of precious energy. Despite
having cancer on and off for almost 15
years, I still find it very hard sometimes
to deal with this new normal.
However it could be a whole lot worse.
I don’t have any pain and I still have
hair. Two things I’m very grateful for.
I realise I’ll never have my BC life
again. But I know that as a woman with
advanced ovarian cancer I’m lucky to
still be here, exhaustion and all. Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
The year began with me starting the process of
redundancy from the American bank where I worked in
Cardiff; we were selling our cottage with an acre of land
on the mountainside above Abergavenny, and were due
to complete on the purchase of a completely derelict
farmhouse with three barns and five acres on the side of
Snowdon in North Wales. The plan was to completely restore the farmhouse, doing
all the work ourselves from the roofing, lime plastering
and putting in a water supply, etc, and then open for B&B.
Then disaster – in February I was diagnosed with ovarian
cancer. Having had breast cancer in 1992, I was not
sure of the outcome of the diagnosis of ovarian cancer
especially as the swelling of my abdomen was very rapid. The question was – should we still go ahead with the
purchase of the farmhouse? What was to be the future
for both of us? This had to be a team effort; we had only
been together eight years and did not want our dreams
to come to an end so after a long discussion, David and I
decided to go ahead and buy the farmhouse.
Gina Kent: enjoying life at her eco home.
I had the operation, came home from hospital and more
sad news, one of our Great Dane dogs, Cloe, had to be
put to sleep. What else was going to happen to us? acre of land and an acre of beach on the west coast of
Scotland and helped with the build of our eco house. We have just taken on two rescue Great Dane dogs
again, spent five weeks in New Zealand in 2014 and
been to Italy and Germany for three weeks holiday
traveling by train.
I started chemotherapy and when I felt well enough I
helped David start packing for the move. On April 10
David and Bruno our other Great Dane moved into a
static caravan in the farmyard 160 miles north, and I
stayed in Cardiff with a friend who had kindly offered to
look after me.
I was close to Velindre Hospital for my treatment and the
staff there were wonderful. One of my sons gave me a
framed photo of the farmhouse and told me “Mum this is
what you have to aim for”.
So what is the future for us? Maybe move and build
another house – but this time try to build it ourselves, we
are only 74 and 72 years young! Life is an adventure and
we both enjoy every day.
We are both so lucky to be alive.
Gina Kent, Ardpatrick, Near Tarbert, Argyll and Bute.
In July, I eventually moved up to Snowdonia and even
though I was not as fit as I had been, I started to help
David take the remainder of the roof off the farmhouse
and gradually built up my strength.
Get writing...
And YES we did achieve the restoration and YES we did
open for B&B.
So what happened next? David had laryngeal cancer in
2005 and I asked him if there was anything he would like
to do. Build a house he said. So in 2009 we bought an
Postbag
We welcome letters for our postbag pages.
Please drop us a line about how you are coping
with ovarian cancer, what has helped and
inspired you or any concerns you may have.
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Phone Ovacome’s Freephone support line on 0800 008 7054
ovarian cancer charity
Thank you! FROM LEE,
FUNDRAISING MANAGER
Follow me on Twitter @LeeOvacome and see more thank yous on our website ovacome.org.
uk/fundraise/thank-you/
Rotary club
Shaved head
Trekking
To Sue Furby for choosing Ovacome
as one of her charities of the year
when president of Middleton Rotary
Club, raising an amazing £1,500.
To Charlene Lane who decided to
shave her head before chemo to raise
an awesome £2,395.70 and donated
her hair to the Little Princess Trust.
Two marathons
Mini triathlon
Bob Burgess who walked the
breathtaking 500 miles from Saint-JeanPied-de-Port, in the French Pyrenean
foothills, to Santiago de Compostela, in
north west Spain, to support Ovacome
and raised a really awesome £2,620.
Jon Channel for running both the
London and Berlin Marathon in great
times and raising a brilliant £951.40.
To sisters Michelle McDonald and
Danielle Stansfield who completed
a mini triathlon, 200m swim, 5k bike
and a 2.5k run and were still smiling
afterwards. They raised a wonderful
£550.
Old boys dinner
To Stuart Fawcett and his son who
organised an amazing reunion with
former pupils at Sir William Turner’s
school, Redcar and raised a fabulous
£400.
Great North Run
Craig McMurrough for taking to
Newcastle’s streets and running a
half marathon dressed up as a shoe.
Craig raised a wonderful £1,320.25 in
memory of his beautiful sister Cheryl.
SarahFest
To Amelia Thornber, friends and
family for creating a truly amazing
festival - SarahFest - in honour of her
wonderful mum Sarah. They raised a
staggering £1,875.
Skydiving
Katelyn MacVicar and Ailsa Hughes
who were so brave to jump out of a
plane flying at 10,000 feet to raise an
incredible £675.49 in memory of
their lovely gran.
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Serenade
To Julianne Jennings who organised
a beautiful summer concert to
celebrate her inspirational sister
Rach and raised a fantastic £570.29.
85th birthday
To Mavis Uttley who decided
to organise a fabulous birthday
party with fun and games raising a
wonderful £350.
Half marathon
To Karen Oxley who donned her
running shoes and ran the Chester
half marathon and her daughter who
ran the fun run, bringing in a brilliant
£746.25.
Year 10 pupils
To all the Year 10 pupils of Smithdon
High School who put on a multitude
of events to raise vital funds and
donated a very impressive £285.
FUNDRAISING IDEAS
DECEMBER
4
Entry includes a free Santa suit
for every runner!
Afternoon tea
Kay Pritchard who arranged an
afternoon tea for 100 people with
lots of lovely food. Everyone gave
generously and she raised an incredible
£530.
10K
Michelle Wilson who braved the
elements and ran the Worthing 10K in
memory of her beautiful mum Sue, and
raised a terrific £365.
Table sale
To Jacqui Betteridge who has been
fundraising for Ovacome all year at her
local church lunch club and has raised a
wonderful £157 for our work.
Everyone
To everyone that has raised vital funds
for Ovacome, sorry we cannot mention
all events.
Follow Ovacome on Twitter and Facebook or visit www.ovacome.org.uk
Collection tins
Collection tins or collection buckets are an easy and hassle-free
way to raise funds. You can place one of our tins in a local store,
coffee shop, community centre or other public place.
FEBRUARY
26
Annual ball
To Michele Chessum and Bailey Trailers
who chose Ovacome as their charity
of the year for their annual ball and
managed to raise a truly outstanding
£7,026.32.
Santa Run
5km and 10km routes available.
4,000 Father Christmas’s
will descend upon London’s
Victoria Park.
Celebrate and fundraise
If you have a birthday, anniversary or another celebration
coming up you could support our work by asking your guests to
make a donation to Ovacome instead of gifts.
Coventry Half Marathon
is a single lap run through
Coventry city centre and the
countryside beyond.
MARCH
5
12
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The Paris Half Marathon
is one of the best overseas half
marathons for UK runners to take
part in!
Bath Half
The Vitality Bath Half Marathon
or the ‘Bath Half’ as it is
affectionately known.
Vitality North London Half
Marathon a truly unforgettable
running event, with runners
finishing their 13.1 mile journey
inside the iconic Wembley
Stadium.
Would you like to take part in one
of these events, or do you know
someone who might like to?
For more information, T-shirts,
running vests, training plans,
fundraising packs and a list of
events throughout the year please
get in touch with Lee Priestly –
[email protected] –
020 7299 6651
All types of jewellery and watches
We recycle all unwanted jewellery, odd earrings, broken chains,
costume jewellery, watches, children’s jewellery, etc, in all
materials: plastics, wood, bronze, gold, silver, etc. Each item we
receive is individually assessed and recycled to get Ovacome
the highest price possible. Just call or email Lee Priestly for the
Freepost label [email protected] – 020 7299 6651.
Leaving a gift in your will
By leaving a gift in your will you can help us change women’s
lives. Every single pound has the power to make a difference
and help us transform stories of loss into stories of survival.
Please consider supporting us in this very special way and
help our work continue.
Tax rules may mean that if you leave at least 10% of your
estate to charity, the inheritance tax rate on the rest of your
estate may reduce from 40% to 36%.
Contact Lee Priestly on 020 7299 6651 or email her at
[email protected]
Fundraising | Events calendar
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