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www.ovacome.org.uk Newsletter summer <strong>2014</strong><br />

SUMMER OF<br />

BAKE OFFS<br />

Unleash your inner<br />

Mary Berry and raise<br />

money for <strong>Ovacome</strong><br />

SEX AFTER SURGERY<br />

Answers to the questions you<br />

didn’t like to ask<br />

BRCA TESTING<br />

Why it might be best to know<br />

SURVIVORS TEACHING STUDENTS<br />

Jenny Agutter helps launch awareness pilot<br />

for GPs, with the Clark family and <strong>Ovacome</strong><br />

it together


comments<br />

contact <strong>Ovacome</strong><br />

Chief executive:<br />

Louise Bayne<br />

Support services nurse:<br />

Ruth Payne<br />

Susan Morgan-Walters<br />

Volunteer and<br />

information manager:<br />

Ruth Grigg<br />

Administrator:<br />

Sonia Vig<br />

Support line: 0845 371 0554<br />

020 7299 6650<br />

Email: support@ovacome.org.uk<br />

Administration line:<br />

020 7299 6654<br />

Email: ovacome@ovacome.org.uk<br />

Address: <strong>Ovacome</strong>,<br />

B5, City Cloisters, 196 Old Street,<br />

London EC1V 9FR<br />

Office hours:<br />

Monday to Friday 10am – 5pm.<br />

Follow <strong>Ovacome</strong><br />

on Twitter and Facebook<br />

for daily news, or visit<br />

www.ovacome.org.uk<br />

Registered Charity Number 1058026<br />

To register as a member of <strong>Ovacome</strong><br />

please send your details to the following<br />

address or call the telephone number<br />

above<br />

© <strong>2014</strong> <strong>Ovacome</strong><br />

B5, City Cloisters, 196 Old Street,<br />

London EC1V 9FR.<br />

OVACOME is a voluntary organisation<br />

and relies on donations<br />

The information gathered in this newsletter<br />

is from many sources and is provided for<br />

guidance only. <strong>Ovacome</strong> has made every<br />

effort to ensure that it is accurate but can<br />

make no undertakings as to its accuracy<br />

or completeness. All medical information<br />

should be used in conjunction with advice<br />

from medical professionals<br />

Front cover: At the launch of<br />

the Survivors Teaching Students<br />

programme: the Clark family with<br />

<strong>Ovacome</strong>’s patron, Jenny Agutter.<br />

Image taken by Skye Brackpool at<br />

Brightontogs.<br />

Designed, produced and printed by<br />

Berforts Information Press Ltd<br />

www.informationpress.com<br />

Welcome to <strong>Ovacome</strong>’s summer newsletter<br />

We are entering a new era for cancer treatment, with a<br />

staggering 50% of people diagnosed with the disease today<br />

likely to be cured.<br />

While ovarian cancer is one of the more tricky areas to treat,<br />

Dr Richard Osborne, a consultant medical oncologist at Dorset<br />

Cancer Centre, told Members’ Day attendees that he wanted to share<br />

his “enthusiasm and optimism about progress in ovarian cancer treatment”.<br />

It’s largely down to the personalised way that women are now being managed with<br />

the introduction of multi-displinary teams working together to come up with tailored<br />

treatment plans, rather than a one approach suits all strategy, he said.<br />

The amount of options available to treat the disease is increasing with newcomers like<br />

Avastin making positive change. And a new armoury of drugs, such as Olaparib (see<br />

pages 6 and 7), are lining up to give the next generation of precision medicine.<br />

So Cancer Research UK’s ambitious plans to see three-quarters of all cancer patients<br />

surviving their disease in the next 20 years could well be within grasp. After all its<br />

recent landmark figures show a massive improvement from the early 1970s, when just<br />

a quarter of people diagnosed with cancer survived 10 years.<br />

It’s true that for many with ovarian cancer their disease is caught too late to be cured.<br />

But reassuringly it has become a disease that can be lived with using maintenance<br />

medicine, such as hormone therapy, and top up chemotherapy or surgery. This allows<br />

women to get on with their lives and to think of ovarian cancer more as a chronic<br />

illness such as diabetes.<br />

Hopefully this newsletter will help you get into this positive mindset. Happy reading.<br />

Juliet Morrison, newsletter editor.<br />

Thoughts from the chair<br />

Hello. I am absolutely delighted to be writing this comment piece<br />

as the new <strong>Ovacome</strong> chair of trustees.<br />

I have been a supporter of the charity since I read Sarah Dickinson’s<br />

article in Good Housekeeping in 1996 and have watched it grow (and<br />

support the women I was working with) into the amazing organisation<br />

that it is today.<br />

I want to thank Noëline Young for all her hard work over the past 10 years as chair and<br />

only hope that I can at least half fill her shoes - for this would be a job well done! I also<br />

want to thank Noëline for her personal support which I hope will continue.<br />

I was pleased to meet so many people at the recent Members’ Day. This was a truly<br />

inspiring event with great speakers and the opportunity to ask questions and share stories<br />

which made the day so much more valuable and enjoyable. There was a real sense of<br />

what has already been achieved for women with ovarian cancer and of the way that<br />

things will be improved in the future.<br />

Thank you again for welcoming me and for giving me the opportunity to use my<br />

experience (and time now the children have grown up!) to help steward the organisation<br />

to continue to do great things.<br />

Cathy Hughes.<br />

<strong>Ovacome</strong> was founded in 1996 by Sarah Dickinson.<br />

Trustees to the charity are: Cathy Hughes (chair), Simon Chantrey (treasurer),<br />

Sean Kehoe (medical adviser), Clare Barsby, Adrian Dickinson and Noëline Young.<br />

2 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


news<br />

Teaching ovarian<br />

cancer away from<br />

the text book<br />

<strong>Ovacome</strong>’s new Survivors Teaching Students<br />

project, which brings the voices of ovarian<br />

cancer survivors to medical and other clinical<br />

students, was successfully launched in<br />

May with a pioneering presentation to our<br />

supporters and funders.<br />

Presenters Jackie Rose, Samixa Shah and Jenny Hayes spoke<br />

movingly about their experiences of diagnosis, treatment and<br />

living with ovarian cancer to drive home crucial information<br />

that will help to improve outcomes for women.<br />

<strong>Ovacome</strong> patron Jenny Agutter hosted the event and told<br />

how learning of the diagnosis of a woman she knew had<br />

convinced her to join the charity and support its innovative<br />

campaigning to raise awareness.<br />

Survivors Teaching Students is supported by the family of<br />

Dr Lisa Jayne Clark, a consultant in emergency medicine<br />

who died of ovarian cancer aged just 40 in October 2012.<br />

She trained at Charing Cross Hospital, which welcomed the<br />

<strong>Ovacome</strong> launch and gave the venue for free. The event<br />

began with a film about her life and her family’s support for<br />

the project in her memory.<br />

Talking it over: <strong>Ovacome</strong> supporters after presentation.<br />

Presenter Samixa Shah says: “It was a great experience,<br />

I thoroughly enjoyed being a presenter and although I was<br />

nervous about speaking I am so pleased to be able to use what<br />

happened to me in a positive way to help other women.”<br />

A powerful voice: Jackie Rose, Jenny Hayes, Samixa Shah<br />

and Jenny Agutter (back row first, left to right).<br />

Now <strong>Ovacome</strong> is receiving enquiries from medical schools,<br />

nursing schools and other education settings from across the<br />

UK and the next STS date is firmly booked. Many <strong>Ovacome</strong><br />

members have volunteered to take part as presenters.<br />

“This is an exciting pioneering programme that <strong>Ovacome</strong><br />

is offering for free as a<br />

practical and positive way<br />

of communicating with the<br />

doctors and nurses of the<br />

future,” says <strong>Ovacome</strong>’s chief<br />

executive, Louise Bayne.<br />

“The programme has been<br />

proved to be an effective way<br />

of giving information that<br />

is retained by putting real<br />

women’s voices and faces<br />

to ovarian cancer. It brings<br />

the story of ovarian cancer<br />

alive for students, rather than<br />

Noteworthy talks.<br />

relying on a dry text book.”<br />

Survivors Teaching Students: Saving Women’s Lives is<br />

owned and trademarked by the Ovarian Cancer National<br />

Alliance in the US.<br />

Would you like to be involved? To find out more email<br />

Ruth Grigg at r.grigg@ovacome.org.uk<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 3


Photography: Daily Echo, Bournemouth<br />

news<br />

Singing to recovery<br />

Gareth Malone, the preppy choirmaster credited with reigniting our interest in<br />

choral singing through his BBC Two series The Choir, would be proud. For word<br />

is getting around about how uplifting being part of a singing group can be and the<br />

benefits are numerous when dealing with illness.<br />

Rising Voices - a community choir for people affected by<br />

cancer in Dorset, Hampshire and Wiltshire - has found in<br />

a study that members have benefited from being part of a<br />

mutually empathetic community, in which they were not<br />

treated as victims.<br />

Altogether Rising Voices: Noëline Young (fourth from left, front row).<br />

As well as getting enjoyment from singing as a group,<br />

members liked the social interaction at weekly rehearsals and<br />

the travel to events, which could be anywhere from a local<br />

shopping centre or Women’s Institute meeting to a twinned<br />

event in Cherbourg.<br />

Concentrated chemo<br />

A<br />

decision on whether to<br />

progress with a new method of<br />

chemotherapy for treating ovarian cancer<br />

could be made soon.<br />

PETROC is a study of the use of<br />

chemotherapy that is given into the<br />

peritoneal space (IP) for ovarian cancer,<br />

rather than into a vein (IV). This<br />

increases the concentration of the drug<br />

around the cancer and can increase its<br />

effectiveness. The study is for patients<br />

who need to complete their treatment<br />

after primary chemotherapy for three<br />

cycles and a successful interval operation.<br />

This technique was new to the UK<br />

while it had been tested previously in<br />

the USA. The early studies had a lot of<br />

problems with toxicity which delayed<br />

acceptance in the UK. However,<br />

medical staff have learnt how to give<br />

the treatment much more safely, and<br />

UK centres have been trained so that<br />

after the first 150 patients there was<br />

no difference in toxicity between the<br />

Carboplatin and Paclitaxel given in the<br />

IP arm or the control IV arm.<br />

There was a third arm in the study using<br />

IP Cisplatin instead of the Carboplatin,<br />

however the independent data<br />

monitoring committee recommended<br />

that this be stopped as it was no more<br />

effective and more toxic.<br />

Member and <strong>Ovacome</strong> trustee Noëline Young says that the<br />

established associations between music and health, both<br />

physical and spiritual, have been well documented and<br />

highlighted in a report by Cardiff University.*<br />

“Participation in music making has been shown to improve<br />

well being and music has the power to communicate with<br />

individuals at times of difficulty. This formed the background<br />

to the establishment of our survivors’ choir, Rising Voices,”<br />

says Noëline, an ovarian cancer survivor herself.<br />

“The intention was to encourage participation in singing<br />

to boost confidence and social interaction and promote<br />

wellbeing, as an aid to recovery from cancer.”<br />

The choir has been supported by a start-up grant from<br />

Macmillan Cancer Support and Dorset Cancer Network, but<br />

longer term it plans to be self-sufficient, supported through<br />

voluntary donations by members, friends, donations and<br />

money raised from public performances.<br />

If you are interested in joining Rising Voices, it rehearses<br />

weekly at St John’s Church in Parkstone, Poole.<br />

e-mail admin@risingvoices.org.uk or phone 07500 676083.<br />

*Gale NS, Enright S, Reagon C, Lewis I, van Deursen R.<br />

A pilot investigation of quality of life and lung function following<br />

choral singing in cancer survivors and their carers. Cancer,<br />

2012; 6:261<br />

The study has now been resubmitted to<br />

Cancer Research UK with the planned<br />

interim analysis to allow the number<br />

of centres giving IP treatment in the<br />

UK to increase from nine to 28 and<br />

to include a further 630 patients in<br />

the trial, to prove whether it increases<br />

survival.<br />

Dr Sean Kehoe, a gynae surgeon.<br />

has reviewed the medical stories on<br />

page 4 and 5<br />

4 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


Around the<br />

world support<br />

Cancer charities from across the globe united this<br />

summer in a powerful effort to raise awareness<br />

of the symptoms of the disease in the second World<br />

Ovarian Cancer Day.<br />

In a global movement, which took place on May 8, women<br />

pledged to tell at least five others about the most serious<br />

gynaecological cancer.<br />

<strong>Ovacome</strong> was delighted to take part in the UK, helping to<br />

build a sense of solidarity in the fight against the disease,<br />

says its chief executive, Louise Bayne: “We’re very proud<br />

to take part in World Ovarian Cancer Day in which all the<br />

ovarian cancer charities come together in a joint effort to<br />

raise awareness and to give women living with the disease a<br />

feeling of solidarity.”<br />

In the UK, the Department of Health has been investing<br />

in an awareness programme for ovarian cancer. It has<br />

undertaken a regional pilot for ovarian cancer symptoms<br />

Overcoming it together<br />

Improving survival rates, earlier<br />

diagnosis and access to appropriate<br />

treatments recommended by clinicians<br />

for ovarian cancer were among the key<br />

issues which <strong>Ovacome</strong> members have<br />

called for in a report which the charity<br />

presents to MPs this month.<br />

The charity has been polling its<br />

members to come up with priorities for<br />

improving ovarian cancer care, to give<br />

a series of recommendations to help<br />

news<br />

awareness<br />

in the<br />

North West and Borders as part of its<br />

Be Clear On Cancer campaign.<br />

Centred on the main message that if you<br />

feel bloated for three weeks or more you should see your GP,<br />

a television advert was included in the campaign.<br />

<strong>Ovacome</strong> awaits the pilot results to see what impact<br />

it has had in the regions. If the initiative has been<br />

successful, the charity will again call for ovarian cancer<br />

to be one of the cancers included in a national level<br />

campaign in 2015. To see the advert online visit:<br />

http://www.nhs.uk/be-clear-on-cancer/ovarian-cancer/home<br />

GSK withdraws Votrient application<br />

Initial hopes that the drug Votrient<br />

could be used in treating late stage<br />

ovarian cancer have been dashed, with<br />

GlaxoSmithKline withdrawing its<br />

application to the European Medicines<br />

Agency.<br />

It was found that the drug, also<br />

known as Pazopanib and licensed for<br />

kidney cancer and some types of soft<br />

cell sarcomas, did not give a positive<br />

the Government and the NHS achieve<br />

these goals.<br />

For despite positive steps to improve<br />

the quality of care and treatment, the<br />

survival of ovarian cancer patients<br />

living in the UK is still poorer than in<br />

comparable countries.<br />

The launch of the ‘Overcoming it<br />

together’ report at the parliamentary drop<br />

in event on 16 July, will give <strong>Ovacome</strong><br />

members attending the ear of MPs. They<br />

benefit-risk scenario after further<br />

analysis of data from the late-stage trial.<br />

GSK said it was disappointed by the<br />

findings, which came after it found the drug<br />

caused an improvement in progression-free<br />

survival in its Phase III study.<br />

GSK’s director of patient relations,<br />

Geraint Thomas, says while the company<br />

is disappointed by the latest results, it will<br />

progress additional analyses which may<br />

will be able to talk about their personal<br />

experiences and give input on what<br />

would have made their journey easier.<br />

They will also hear from Fiona<br />

Mactaggart, MP (Slough), who<br />

will give a talk on how <strong>Ovacome</strong><br />

members might engage effectively with<br />

politicians to raise areas of concern on<br />

a local and national level. Materials<br />

giving practical advice on this are<br />

available from <strong>Ovacome</strong>’s head office.<br />

add to the body of scientific evidence in<br />

this disease setting.<br />

“GSK remains committed to<br />

understanding the utility of pazopanib<br />

in relapsed ovarian cancer as more<br />

data become available through other<br />

studies,” he says.<br />

<strong>Ovacome</strong>’s chief executive Louise<br />

Bayne, says: “We are naturally<br />

disappointed.”<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 5


ask the doctor<br />

Better to know<br />

A<br />

new drug called Olaparib is proving successful in stopping cancer<br />

cells thriving by repairing damaged DNA, and is particularly effective<br />

on patients found to have faulty BRCA genes. It has just hit a regulatory<br />

setback in the US, but Dr James Mackay (left), consultant genetic oncologist<br />

at University College London, explains why he hopes it gets approval here.<br />

What is BRCA and why<br />

is it a problem?<br />

JM: BRCA1 and BRCA2 are genes that produce proteins that<br />

suppress tumours. These proteins are vital in helping repair<br />

damaged DNA. However, if BRCA genes are mutated, this<br />

damage repair may not take place, meaning that cells may be<br />

more likely to develop alterations in their genetic make-up that<br />

can lead to cancer.<br />

Why and how do we test<br />

for the BRCA mutation?<br />

JM: Up until a couple of years ago, the NHS tended to carry<br />

out BRCA testing based on family history. A blood sample<br />

was taken to see if a woman carried the mutation. If they did,<br />

doctors would offer the test to female family members who could<br />

decide whether to have preventative ovarian or breast surgery,<br />

as they could be at higher risk of developing these cancers.<br />

Now an increasing number of UK cancer centres – including<br />

the Royal Marsden in London as well as Cambridge and<br />

Glasgow – are offering women diagnosed with ovarian cancer<br />

BRCA blood testing as routine. The advantage is that targeted<br />

drugs can be used to treat women with the BRCA mutation<br />

which can be more effective than standard chemotherapy.<br />

This has meant that there has been a big change over the past<br />

year from believing that women should be tested based chiefly<br />

on their family background.<br />

The change in thinking has been fuelled by the arrival of<br />

Olaparib, which has been found to be effective as a treatment<br />

for women who test positive for BRCA.<br />

Some 14% of patients with serous ovarian cancer have the<br />

BRCA mutation. However, we don’t think it is necessary to<br />

screen the wider population because the chances of having a<br />

faulty BRCA gene is just one in 400, so the risk is low even for<br />

women who don’t know their family history.<br />

What are the tests<br />

designed to find out?<br />

JM: There are three possible results. The test can be normal,<br />

it can detect a fault indicating increased risk of cancer, or<br />

it can find a change in the DNA sequence. Previously this<br />

variance used to be dismissed, but now it is recognised that<br />

it could mean that the woman is at higher risk. Under a<br />

method that many specialists use, including myself, called<br />

the Myriad Genetics test, these inconclusive variances come<br />

up in about one in 100 tests. Standard NHS testing gives one<br />

in 10 people an inconclusive result.<br />

What is Olaparib?<br />

Olaparib is a PARP-1 inhibitor. A cancer cell has damaged<br />

DNA and relies on an enzyme called PARP – or Poly ADPribose<br />

polymerase – to repair it. Olaparib can stop the PARP<br />

from repairing DNA damage.<br />

Olaparib is the first of many PARP inhibitors in development<br />

at the moment to reach clinical use. It is in phase III clinical<br />

studies in platinum sensitive relapse (SOLO2) and first line<br />

maintenance (SOLO1).<br />

However, although it represents a significant step, it is<br />

important not to get carried away about its success in<br />

treating late stage ovarian cancer. One interesting question is<br />

whether the drug can be effective used at an earlier stage of<br />

treatment.<br />

Who will Olaparib be available to?<br />

People with relapsed ovarian cancer or those sensitive to<br />

platinum or platinum type drugs.<br />

AstraZeneca submitted Olaparib for its European licence in<br />

September 2013, based on the availability of tissue as well as<br />

blood BRCA testing.<br />

It will be available initially through the Cancer Drugs Fund<br />

and private sector, but as early as the end of this year, NICE<br />

could clear the drug to be used on the NHS by 2016.<br />

Olaparib was dealt a setback this June when the US Food<br />

and Drug Adminstration’s Oncologic Drugs Advisory<br />

Committee (ODAC) voted 11-2 against the accelerated<br />

approval of the drug as a maintenance therapy for women<br />

with platinum-sensitive relapsed ovarian cancer with<br />

germline BRCA mutations.<br />

It said until there was further data to judge by, there were<br />

too many troubling questions about potential side effects<br />

of the drug as well as uncertainties about the efficacy data<br />

demonstrating an improvement on progression-free survival.<br />

6 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


ask the doctor<br />

It’s not over yet, though. AstraZeneca continues with<br />

its confirmatory Phase III study of the PARP inhibitor,<br />

SOLO-2. And the R&D group will need to report clear<br />

signs of a benefit to get this drug to the U.S. market.<br />

In Europe, AstraZeneca is hoping for a smoother journey.<br />

It goes without saying that we want to get Olaparib<br />

available in clinical practice as soon as possible.<br />

Do you think that all women<br />

with ovarian cancer should be<br />

BRCA tested now and ask for<br />

the test at their hospital?<br />

It looks like Olaparib could make a significant impact on<br />

the treatment of late stage ovarian cancer. That’s why<br />

we are hoping that everyone will be offered testing at<br />

diagnosis: as a first step with blood and eventually with<br />

tissue. We want this so that we can see which women will<br />

benefit from Olaparib.<br />

I think BRCA should be more widely available to other<br />

women too who might not necessarily have a strong case<br />

with regard to their family history, but could well benefit.<br />

I’m thinking of, for instance, a woman in her early 30s<br />

who has triple negative breast cancer. Even if she doesn’t<br />

have a strong family history, there is still a reasonably<br />

high risk of her having the BRCA1 or BRCA2 fault and<br />

so she will be at high risk of developing ovarian cancer. It<br />

would be a nightmare to get through breast cancer only to<br />

develop ovarian cancer in her early 40s when this could<br />

be avoided.<br />

Should a positive BRCA test<br />

always lead to a recommendation<br />

for preventative treatment?<br />

JM: If, say, a patient is found to be BRCA positive and she<br />

has an 18–year-old daughter, would we recommend having her<br />

daughter tested? I would question that as she might have 22 years<br />

ahead of her before she decided to have her ovaries removed<br />

Photography by Tony Larkin/Rex Features.<br />

Hollywood actress Angelina Jolie has already shone the spotlight on the<br />

importance of high-risk women knowing their BRCA status.<br />

in her early 40s after having a family. This might be different,<br />

of course, if the daughter had breast cancer. A lot depends too<br />

on the clinical context and such matters should always be the<br />

patient’s decision rather than having rules about it.<br />

This piece has been reviewed by<br />

Chris Jacobs, consultant genetic<br />

counsellor and joint lead for cancer<br />

genetics clinical genetics department at<br />

Guy’s Hospital, London.<br />

She says: The article mentions that standard<br />

NHS BRCA1 and BRCA2 genetic testing<br />

gives one in 10 people an inconclusive result,<br />

whereas private testing via the company<br />

Myriad Genetics gives inconclusive results<br />

to around one in 100 tests. This difference<br />

is likely to be due to the greater number of<br />

tests undertaken by Myriad genetics than<br />

the NHS laboratories which enables them to<br />

classify more inconclusive resuts as cancer<br />

causing (pathogenic) or non-cancer causing<br />

(non pathogenic). If all laboratories, including<br />

private genetic testing companies, were to share<br />

this type of data, it would enable all BRCA1/2<br />

genetic testing to improve.<br />

The article mentions that genetic testing<br />

should be more widely available and gives an<br />

example of a woman in her early 30s with<br />

triple negative breast cancer and no cancer<br />

family history. The NICE guidelines for<br />

familial breast cancer, which were published<br />

in June 2013, recommended that BRCA1<br />

and BRCA2 genetic testing is offered to any<br />

woman in England and Wales with at least a<br />

10% chance of a fault in one of these genes.<br />

This would include women with ovarian cancer<br />

and women with triple negative breast cancer<br />

who are diagnosed at a young age and have no<br />

family history of the disease. Women in this<br />

situation can be referred to their local regional<br />

genetics service to discuss genetic testing.<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 7


fundraising<br />

Tea with <strong>Ovacome</strong> <strong>2014</strong><br />

Tea with <strong>Ovacome</strong> has become the social event of the year in the ovarian cancer calendar:<br />

smashing records in <strong>2014</strong> with 200 attendees and £8,228 raised for the charity.<br />

The T.W.O. team, led by <strong>Ovacome</strong><br />

member Adele Sewell, is thrilled and<br />

has set itself<br />

the ambitious<br />

goal of<br />

£10,000 for<br />

the next<br />

fundraiser to<br />

be held in<br />

March 2015.<br />

This was the<br />

fifth Tea with<br />

<strong>Ovacome</strong><br />

and as usual<br />

planning<br />

started early.<br />

Tickets went<br />

on sale in Where it all started: Adele Sewell,<br />

early October at event, with her daughter Zindzi.<br />

and were sold<br />

out six weeks later. Also, Adele secured<br />

some top drawer supporters for the<br />

entertainment on the day.<br />

Key note speaker was Helen Fawkes,<br />

the BBC journalist who writes a regular<br />

column for <strong>Ovacome</strong>’s newsletter<br />

about her journey with ovarian cancer.<br />

“Helen told us her story of living<br />

with ovarian cancer with her natural<br />

humour and professionalism; at once<br />

making us laugh and then the next<br />

minute bringing tears to our eyes,”<br />

says Adele.<br />

Apricot store displays.<br />

Then there was the singer Ayanna Blair-<br />

Ford. “At a private family event last year,<br />

I found myself in the same room<br />

as the incredible voice that is<br />

Ayanna Blair-Ford. Only 17, doing<br />

A-Levels and hoping to pursue a<br />

career in architecture. We were<br />

delighted when Ayana agreed to<br />

be our featured entertainer at this<br />

year’s event,” says Adele.<br />

But the models - all ovarian cancer<br />

patients at some time - were the<br />

stars of the show, says Adele.<br />

“They brought their energy and<br />

enthusiasm to the room.”<br />

They were<br />

dressed top<br />

to toe in<br />

clothing<br />

from Apricot,<br />

generously<br />

donated by the<br />

fashion retailer<br />

for the second<br />

year running.<br />

They strutted<br />

their stuff on<br />

three catwalks,<br />

each with a<br />

different theme.<br />

The final one was all teal and included<br />

the beautiful Apricot dress which was<br />

designed exclusively for <strong>Ovacome</strong>,<br />

Retail therapy<br />

with all proceeds from it going to the<br />

charity.<br />

A special thanks should also be given<br />

to Barry M, which provided two<br />

manicurists for the day to paint visitors’<br />

nails teal, as well as teal varnish for the<br />

goody bags. This was part of the Teal<br />

Tips campaign which ran throughout<br />

Ovarian Cancer Awareness Month in<br />

March, raising hundreds of pounds and<br />

awareness for the charity.<br />

Thanks also to <strong>Ovacome</strong> supporter,<br />

the milliner Philip Treacy who kindly<br />

donated another hat to be auctioned<br />

on the day, raising £500.<br />

All together: <strong>Ovacome</strong> members empowered in teal.<br />

• If you would like to take part in Tea<br />

with <strong>Ovacome</strong> 2015, please email<br />

TEAwithOVACOME@yahoo.co.uk.<br />

The beautiful teal dress and the <strong>Ovacome</strong> branded canvas tote bag that fashion retailer Apricot<br />

designed especially for us this awareness month have raised a staggering £17,000 for the charity.<br />

During March Apricot stores had special displays for the items and staff were dressed in teal. The<br />

outlets sold <strong>Ovacome</strong> pin badges, with collection tins and information on ovarian cancer at tills.<br />

This is all thanks to <strong>Ovacome</strong> member Adele Sewell. She persuaded Apricot to produce the dress<br />

and bag after a chance meeting at a friend’s daughter’s 21st birthday party with Karen McGhie, who<br />

drove the project forward.<br />

The <strong>Ovacome</strong> dress, above, is still available in sizes 8, 12 and 16 at the reduced price of £25.<br />

www.apricotonline.co.uk<br />

8 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


A day of empowerment<br />

Some 40 members gathered for <strong>Ovacome</strong>’s annual Members’ Day in what was an<br />

uplifting and informative occasion on the latest treatments, how to deal with sex<br />

after surgery and to be confident in dealing with cancer specialists.<br />

Topping the bill for the day was Dr Richard Osborne, a<br />

medical oncologist at the Dorset Cancer Centre in Poole. He<br />

set the tone by telling members that he wanted to “transfer<br />

my personal enthusiasm about the progress in treatment for<br />

ovarian cancer”, which he said was making steady year-onyear<br />

and discernible decade-on-decade improvements.<br />

He assured members<br />

that we are entering<br />

a time of change with<br />

the “chemotherapyalone<br />

era” coming to<br />

an end. Personalised<br />

treatment plans, he<br />

said, are replacing a<br />

one-shot approach<br />

for all and multiple<br />

options are available to fight the late stage disease which<br />

three out of four ovarian cancer patients are diagnosed with.<br />

With this being the case, many women will face a life of<br />

treating the ovarian cancer as a chronic disease, he said.<br />

“We want to cure ovarian<br />

cancer, but have to accept<br />

that in the majority of<br />

cases it will be about<br />

disease modification: To<br />

make the cancer inactive<br />

and give women a longer<br />

life. Actually, doctors very<br />

rarely cure anything, but<br />

modify it as we see with<br />

high blood pressure and<br />

diabetes.”<br />

A fond farewell<br />

Noëline Young (pictured above<br />

receiving flowers of thanks from<br />

<strong>Ovacome</strong>’s chief executive Louise<br />

Bayne) stepped down as chair at<br />

Members’ Day after 10 years.<br />

Members’ feedback:<br />

‘As always, a great day. My only complaint is<br />

that there is never enough time to talk with as<br />

many people as one might wish’<br />

‘It was worth coming for Dr Richard Osborne’s<br />

presentation alone- very informative and useful.<br />

All speakers very good and well organised day.’<br />

The introduction of<br />

avastin, as a maintenance<br />

drug to treat late stage<br />

disease, fits with this.<br />

But while it gives cause<br />

for optimism we should<br />

not be cracking open the<br />

champagne yet, said Dr<br />

Osborne. “Avastin is not a magic wand. It has its place, but<br />

we should not get too worked up about it. There’s uncertainty<br />

about who to treat with it. Those higher-risk women with<br />

residual disease after treatment seem to do better.”<br />

Other new and exciting strategies<br />

are emerging, he said, including<br />

personalised therapy based<br />

on molecular profiling and<br />

immunotherapy, in which the immune<br />

system is reactivated to fight the<br />

cancer. Then there is<br />

supra-radical surgery<br />

involving lasers and<br />

around 12 hours on<br />

the operating table<br />

and anti-androgen<br />

therapy, to ‘switch off’ male hormones in<br />

women (Coral trial).<br />

Meanwhile, hot topics being debated in<br />

the medical community include giving<br />

oophorectomy surgery for BRCA mutation carriers; surgery<br />

or chemotherapy first (CHORUS trial); giving dosedense<br />

paclitaxel (ICON 8 trial) and PARP inhibitors as<br />

maintenance therapy to BRCA carriers (see pages 6 and 7).<br />

This is all shows that the chemotherapy alone era is ending,<br />

said Dr Osborne. “New strategies are emerging of targeting<br />

therapy, turning switches off, using the patient’s personalised<br />

genetic make up and harmonising the immune system. But at<br />

the same time earlier diagnosis remains a very high priority.”<br />

• Talks were also given by Dr Helen Fairhurst on sex after<br />

surgery (see pages 10 and 11) and there was a confidence<br />

building workshop from trainer Deb Puleston (see<br />

<strong>Ovacome</strong>’s autumn/winter <strong>2014</strong> newsletter).<br />

Senior help<br />

members’ day<br />

Dr Richard Osborne: end of<br />

chemo-only era.<br />

Senior research associate, Lindsay Fraser, appealed<br />

for members to help her with a new area of research<br />

‘exploring the journey of women diagnosed with ovarian<br />

cancer’ in the Gynaecological Cancer Research Centre<br />

at UCL’s Institute for Women’s Health. The research will<br />

explore the journey of women diagnosed with ovarian cancer,<br />

from the patient perspective by talking to women and their<br />

families, rather than examining medical records. Seven<br />

women came forward, but Lindsay sill needs women aged<br />

70-plus, along with their partners, adult children and friends<br />

to help with the scope of the first interview study. Contact<br />

l.fraser@ucl.ac.uk or phone Lindsay on 020 3447 2114.<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 9


feature<br />

The big taboo<br />

Sex may be the last thing on your mind when recovering from an ovarian cancer<br />

diagnosis. But there is plenty help available to get your mind and body in the<br />

right place after treatment, says Dr Helen Fairhurst from the Winton Psychosexual<br />

Medicine Clinic.<br />

For many, returning to a normal sex life after treatment<br />

for ovarian cancer can be difficult. But it is even more of a<br />

problem if the subject remains taboo for patients, partners<br />

and the medical profession. A study in the British Journal of<br />

Cancer in 2003 * found that while a majority of healthcare<br />

professionals thought most women<br />

with ovarian cancer would experience<br />

difficulties, only one in four doctors<br />

and one in five nurses brought the<br />

subject up with patients.<br />

Things may have moved on since the<br />

2003 study and some cancer centres<br />

– such as Dorset, where I work<br />

offer exceptional support to women<br />

through their gynaecological nurses.<br />

However, clinicians – and patients<br />

themselves – often need to do more.<br />

Dr Helen Fairhurst<br />

For instance, there is a network of<br />

pyschosexual clinics on hand throughout the UK, run by<br />

members of The Institute of Psychosexual Medicine. Women<br />

can access these clinics by self-referral or referral by their GP or<br />

other health professionals.<br />

And women themselves need to feel empowered to ask<br />

questions. Your focus may be on getting over the cancer. But<br />

don’t be afraid to bring up the subject of sexuality and how<br />

it may be affected by the type of treatment you are having<br />

as soon as you feel ready to discuss it. The sooner the better.<br />

We know quality of life and general wellbeing can be greatly<br />

enhanced if problems with sexuality are addressed early on.<br />

Sexual problems are not always just down to physical reasons.<br />

Emotional factors, not always experienced at a conscious<br />

level, interfere with sexual pleasure. The underlying causes<br />

of a problem may be physical or psychological in varying<br />

proportions, but are rarely limited to one or the other.<br />

There are several ways cancer and its treatments can undermine<br />

a person’s sexuality. The impact of surgery, chemotherapy and<br />

radiotherapy will be direct and physical. But there may be other<br />

obstacles when it comes to intimacy, such as feeling disfigured,<br />

too tired to bother, changes in sensory perception and difficulty<br />

reaching orgasm. Also women can feel that their body, which<br />

has been prodded and probed by the health professionals, is no<br />

longer really part of them.<br />

But remember, however, that the ‘core’ of your being inside<br />

you is maintained, regardless of the treatment you have had.<br />

Lack of libido<br />

Low sexual desire or libido is a common problem. Many<br />

different emotional and physical factors can affect sexual<br />

desire and may be present in women living with cancer.<br />

Tiredness, stress, relationship problems, menopause<br />

symptoms, worries about children, elderly relatives, finances<br />

and work, or difficulties accepting the changes in body image<br />

that come after surgery are just some examples. And of<br />

course, in some cases sex may be a low priority after facing a<br />

cancer diagnosis and treatment.<br />

Coping with illness symptoms and the effects of treatment<br />

can be challenging enough. Women may feel too unwell to<br />

summon up the energy for the exertions of sex, but still long<br />

for physical closeness. Others find it difficult to enjoy sex<br />

without thinking of their cancer.<br />

At the same time, partners may have difficulty relating to<br />

the anxieties and fears that come with a cancer diagnosis.<br />

They might not understand why their partner feels less<br />

sexy, especially once treatment is complete, and they<br />

can see an outward return to normality. This can lead to<br />

communication misfirings and a downward spiral becomes<br />

established, just at the time when some love and support is<br />

vital. If a woman is harbouring anger and resentment towards<br />

her partner, it can be difficult to get in the right frame of<br />

mind to enjoy sex.<br />

Solutions will vary from person to person, but discussion with<br />

partners, friends and health professionals is often beneficial.<br />

Patients often ask about using hormones to improve their<br />

libido. While it is true that both oestrogen and testosterone<br />

are needed for good sexual function, and are reduced by the<br />

removal of both ovaries, many other factors can influence<br />

sexual desire. This means that hormone replacement may<br />

not be the solution. Also, there is uncertainty about whether<br />

taking these hormones to deal with a sudden surgical<br />

menopause could increase cancer recurrence risk.<br />

A recent study showed that women given Hormone<br />

Replacement Therapy (HRT) after a surgically induced<br />

menopause following treatment for epithelial ovarian<br />

cancer ** had improved longevity as well as a good control of<br />

10 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554<br />

it together


feature<br />

symptoms such as hot flushes. However, it is still difficult to<br />

be confident that HRT is not a risk factor for recurrence.<br />

Change in sensation<br />

Altered sexual pleasure is another common problem found in<br />

women who have had surgery for gynaecological cancer.<br />

For some women, orgasms have always been generated by<br />

the muscle contraction of their uterus at the time of climax.<br />

Following hysterectomy, they are no longer able to feel this<br />

sensation and may find it difficult to orgasm through clitoral<br />

stimulation instead.<br />

They may even be scared to try clitoral stimulation fearing<br />

it might harm the healing process or possibly even lead to a<br />

recurrence of their cancer. While logic tells them that this is<br />

not correct, they find it difficult to get rid of this fear.<br />

Physical examination by a doctor trained in psychosexual<br />

medicine, although not always welcomed by women<br />

after treatment, can then be useful helping correct<br />

misunderstandings about effects of surgery, improve body<br />

image and sexual confidence and to face feelings of loss in a<br />

caring environment.<br />

Painful sex<br />

Painful sex, or dyspareunia can also start after a surgical<br />

menopause. The lower level of oestrogen caused by this can<br />

lead to the vagina becoming dry, thin and losing its former<br />

elasticity.<br />

Local creams and pessaries containing oestrogen hormones<br />

can help. Examples include Vagifem pessaries (which contain<br />

oestrogen hormones), Sylk natural lubricants and Replens<br />

moisturisers. But, as with libido, this might not be the<br />

complete solution and looking at emotional factors can be<br />

very important too.<br />

Vaginismus, the involuntary spasm of the muscles at<br />

the entrance of the vagina often due to subconscious<br />

unacknowledged emotions, is another painful complaint.<br />

One woman I have met with this problem coped very well<br />

during her hospital admission for surgical treatment, but<br />

the true impact of her cancer diagnosis came later when she<br />

started to experience anxiety about her health and also anger.<br />

Her previously active and fulfilling sex life had become<br />

virtually non-existent and painful. Her self-confidence<br />

suffered: she felt ugly and unattractive. Her husband seemed<br />

to take the brunt of her anger not least because he was<br />

apparently unable to empathise with her anxiety about<br />

cancer recurrence. He just didn’t understand that she needed<br />

compliments, to be understood, to be listened to.<br />

Physical examination revealed dryness of the vagina wall,<br />

as well as some vaginismus: both likely to be contributing<br />

to the painful sex. She was not at all keen to use hormone<br />

replacement, even in the form of locally applied oestrogens,<br />

despite reassurance from her cancer specialist that it would<br />

not increase her likelihood of cancer recurrence.<br />

She used a vibrator to help open up her vaginal tissue – this<br />

was her choice as she hated the idea suggested by her surgeon<br />

to use graded vaginal dilators instead. Most importantly, we<br />

were able to make the link between her vaginismus and her<br />

emotional difficulties, resulting in her angry wretched vagina<br />

barring entry to her ‘annoying’ husband.<br />

She also gained some valuable support from friends,<br />

including holding a virtual funeral for her womb and also<br />

from other women at the local cancer support group.<br />

• Dr Helen Fairhurst gave a talk on sexuality after treatment<br />

for gynaecological cancer at <strong>Ovacome</strong>’s recent Members’<br />

Day.<br />

The two studies cited in this piece are: Lack of communication<br />

between healthcare professionals and women with ovarian cancer<br />

about sexual issues * British Journal of Cancer 2003, Stead,<br />

Brown, Fallowfield and Selby and ** Eeles RA et al, Adjuvant<br />

Hormone Therapy Improves Survival in Epithelial Ovarian<br />

Cancer: Results of the AHT randomised trial, submitted to the<br />

British Medical Journal June <strong>2014</strong>.<br />

Helpful resources<br />

<strong>Ovacome</strong> has some useful fact sheets in this area -<br />

‘Ovarian cancer and sexuality’ and ‘Treatment-induced<br />

menopause’ - www.ovacome.org.uk<br />

http://www.macmillan.org.uk/Cancerinformation/<br />

Livingwithandaftercancer/Relationshipscommunication/<br />

Sexuality/Sexuality.aspx<br />

Institute of Pyschosexual Medicine for a list of therapist<br />

locations - www.ipm.org.uk<br />

College of Sexual and Relationship Therapists -<br />

www.cosrt.org.uk<br />

The Menopause Exchange -<br />

www.menopause-exchange.co.uk<br />

Dana-Farber Cancer Institute in Boston: Dr Sharon<br />

Bober’s Sexual Health Program and videos -<br />

www.dana-farber.org/Health-Library/How-cancertreatment-affects-sexuality-in-women.aspx.<br />

This piece has been reviewed by Dr Richard Osborne,<br />

a consultant medical oncologist at the Dorset Cancer<br />

Centre in Poole.<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 11


Our magnificent<br />

marathon team<br />

Ovarian cancer survivor Jackie Rose was among the<br />

runners who competed in April’s London Marathon<br />

for <strong>Ovacome</strong>, with the group raising an enormous<br />

£28,220.62 for the charity.<br />

Jackie Rose: fulfils personal ambition running London Marathon.<br />

Jackie, from Hackney in North<br />

London, was diagnosed with stage 1C<br />

clear cell carcinoma ovarian cancer six<br />

years ago. She has always wanted to run<br />

the London Marathon and on the day<br />

she completed it in just over six hours,<br />

raising £981.12.<br />

Julie Caudle,<br />

from Cowes,<br />

the Isle of<br />

Wight, has<br />

raised £3,647.<br />

She took up<br />

running after<br />

her mother<br />

died of<br />

ovarian cancer<br />

aged 67 in<br />

2009, which<br />

drove Julie<br />

Julie Caudle: now a<br />

“runaholic”.<br />

on to becoming a self-confessed<br />

“runaholic”. She says the only running<br />

she did before her mother’s death was<br />

for the bus. Training for the marathon<br />

was “very hard work” says Julie,<br />

“but nothing<br />

compared with<br />

what people who<br />

have the disease<br />

are suffering”.<br />

Other London<br />

marathon runners<br />

<strong>Ovacome</strong> would<br />

like to thank are:<br />

Gareth Rosser,<br />

who raised<br />

£2,593.16;<br />

Richard Stock<br />

(£4,507.50);<br />

Eleanor Bancroft (£1,599.38); Claire<br />

Zahra (£3,168.31); Michael Lawlor<br />

(£1,453.16); Zare de Haldevang<br />

(£8,601.99); Lizzy Pollot (£910) and<br />

Preethi Sundaram (£759).<br />

fundraising<br />

A funny walk…<br />

for a very serious cause<br />

Comedian Nick Banks and his<br />

entourage of fellow funnymen<br />

from the north-east raised £4,048.94<br />

for <strong>Ovacome</strong> with their Hadrian’s Wall<br />

Walk <strong>2014</strong>.<br />

The group walked 84 miles<br />

along the famous landmark,<br />

taking in venues along the<br />

way with a week’s worth of<br />

gigs. Among the group was<br />

TV comic Patrick Monahan<br />

and well-known performers<br />

Seymour Mace and Silky.<br />

Nick, who runs the event for<br />

a different charity every year,<br />

Kevin Stephens<br />

smashes £10K<br />

of £100K target<br />

Kevin Stephens’ pledge to raise<br />

£100,000 for <strong>Ovacome</strong> may have<br />

seemed wildly ambitious when he made<br />

it back in autumn 2012.<br />

But, Kevin has smashed £10,000 so far<br />

by being on fundraising duty 24/7. He<br />

never misses an opportunity to boost<br />

the charity’s coffers; whether that is<br />

by getting local businesses to display<br />

collection tins, friends to take part in<br />

sponsored runs or new acquaintances to<br />

dispose of loose change.<br />

But Kevin’s ambition is twofold. He has<br />

also worked tirelessly to raise awareness<br />

about the symptoms of the disease,<br />

which took his wife Loraine nearly two<br />

years ago. He has immersed himself in<br />

finding out the latest developments<br />

about the disease, becoming part of the<br />

ovarian cancer community as a regular<br />

and very welcome face at <strong>Ovacome</strong>’s<br />

Members’ Day and the fundraising<br />

event Tea With <strong>Ovacome</strong>.<br />

To support Kevin visit<br />

www.justgiving.com/Loraine-Stephens<br />

says the journey is becoming harder<br />

each time. “It was great fun, but we<br />

were a year older than last time and<br />

I damaged my achilles heel and Jim<br />

Bayes, his knee,” he laughs.<br />

Funnymen don their walking boots for <strong>Ovacome</strong>.<br />

12 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


postbag<br />

A safe place<br />

Meet <strong>Ovacome</strong>’s new wellbeing columnist, Samixa Shah, who will be answering<br />

questions from fellow members in the winter newsletter onwards.<br />

Samixa, who has been treated for ovarian cancer herself, worked as a pharmacist for almost 25 years before deciding “to<br />

help people understand how to take responsibility of their own health, rather than just rely on medicines”.<br />

She did a course in neuro-linguistic programming (NLP) in 2005 and completed a life coaching diploma in 2009. She<br />

then completed a Diploma in Wellness Coaching Skills in 2013.<br />

Samixa has been working as a wellbeing coach at an NHS health centre in London since January 2012 and is still<br />

registered as a pharmacist, which she says helps her “immensely” as a wellbeing coach, “since I understand a number of<br />

health conditions and their treatments and can therefore coach anybody who is having difficulty in their life either due to<br />

their health condition or their lifestyle”.<br />

She says: “I also feel that my interest in alternative therapies helps me coach people who may have difficulties managing<br />

their health with prescribed medicines and feel that they want to use alternative therapies.”<br />

“I strongly believe that the mind-body<br />

connection is of paramount importance<br />

in any healing process as well as in<br />

maintaining a state of wellbeing.<br />

Looking after your mental health during<br />

investigations and after an ovarian<br />

cancer diagnosis is just as important as<br />

the physical side and I have been doing<br />

this in a number of ways myself before<br />

and since being diagnosed with FIGO<br />

stage 4, grade 3 serous carcinoma of the<br />

ovary, primary peritoneum and tubal in<br />

May 2012, aged 49.<br />

Louise L. Hay states in her book – ‘You<br />

Can Heal Your Life’ – “Every cell within<br />

your body responds to every thought you<br />

think and every word you speak.”<br />

This has also been researched in the<br />

book ‘The Hidden Messages in Water’,<br />

by Masaru Emoto.<br />

I informed all my close friends and family<br />

as soon as I was diagnosed. When I was<br />

undergoing treatment and thereafter I<br />

carefully chose to be around friends and<br />

family members who would be positive<br />

and would not bring me down.<br />

I made sure I told everyone what support<br />

I needed from them and was very clear<br />

about when they could come and visit<br />

me and also who could come with me<br />

when I went for my chemotherapy. My<br />

main priority was to be strong both<br />

mentally and physically so that my<br />

husband - who is registered blind - and<br />

my 23-year-old son and other people<br />

around me did not feel helpless. I also<br />

made sure that if someone called I<br />

would only answer the call if it was<br />

someone I wished to speak to. I decided<br />

I had to be in charge since it was<br />

my body and ME going through this<br />

experience!!<br />

I also made sure that during the seven<br />

months I underwent chemotherapy<br />

and surgery, I surrounded myself with<br />

positive books, television programmes,<br />

podcasts and radio shows. I got a lot of<br />

resources from the Macmillan Cancer<br />

Support Centre and did a course in<br />

Mindfulness as well.<br />

My training as a pharmacist and<br />

wellbeing coach came in very<br />

useful since I understood how the<br />

drugs worked and was able to<br />

coach myself to think positively<br />

and make use of my resources to<br />

achieve my health related goals.<br />

I went back to work as a<br />

wellbeing coach in February<br />

2013 and was still undergoing<br />

treatment every three weeks<br />

as I was having Avastin, which<br />

stopped in October 2013.<br />

During this time and even<br />

today I continue with my<br />

mindfulness practice and<br />

make sure that I live for the present<br />

moment and enjoy each day to the<br />

fullest.<br />

I have learnt to appreciate even the<br />

smallest joys of life like watching a<br />

butterfly fly past me or the birds singing<br />

in the garden. I do not worry about the<br />

future since I do not have control over<br />

that. I can only have control over my<br />

thoughts and the present moment.”<br />

Edgware, Middlesex.<br />

- If you would like to send in<br />

a question to Samixa, write to<br />

ovacome@ovacome.org.uk<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 13


postbag<br />

From the frontline<br />

The other day I was at hospital for a check-up. As I waited I showed the woman<br />

who sat next to me some photographs of cows that I’d taken. It may seem a bit<br />

strange but we were doing something that most ordinary people think nothing<br />

of. We’d got talking because of a shared interest.<br />

She sang in classical<br />

music concerts and she<br />

thought I might be<br />

creative in my spare<br />

time. I told her it was<br />

Helen Fawkes: turns to photography distraction.<br />

funny she should say that as I was a<br />

keen photographer and was having an<br />

exhibition of my pictures of cattle. I<br />

got my mobile out to show her some<br />

of the images.<br />

Coming from the countryside I enjoy<br />

taking snaps of these beautiful, big<br />

beasts. So when I came up with my<br />

bucket list, which I call my List for<br />

Living, number 21 was to have my<br />

very own exhibition.<br />

I’ve taken hundreds of photos of cows<br />

and steers on my dad’s farm. I like it<br />

when they look straight at the camera<br />

and seem to pose for me. Something<br />

Strong sense of purpose<br />

remember thinking that I had pulled<br />

I a muscle and blaming the pain on<br />

dancing in impossibly high heels at a<br />

wedding party. The pain went away,<br />

but a month later I went to another<br />

wedding, same dress, same heels, same<br />

dancing and the pain came back - only<br />

this time it didn’t go away.<br />

I went to work as usual on that fateful<br />

day in October 2012, but I had to leave<br />

mid morning as the pain got substantially<br />

worse. I drove to my surgery. The<br />

receptionist took one look at my teary<br />

face and next minute I was sat with a GP.<br />

The words ‘mass’ and ‘cyst’ floated across<br />

my consciousness, which hospital would<br />

I prefer? Could I drive to the emergency<br />

department?<br />

I didn’t call my husband until quite a bit<br />

later, stupid really but he was busy and I<br />

had only put four hours on the car park<br />

ticket. I remember the lovely registrar<br />

in the emergency department and the<br />

look on the face of the radiologist as<br />

the ultrasound scan passed over my<br />

abdomen, I remember them asking<br />

which consultant<br />

was on call and if the<br />

gynaecological registrar<br />

could come down,<br />

I remember thinking<br />

I’ve got cancer.<br />

It was in fact stage<br />

4 advanced ovarian<br />

cancer, with some lung<br />

mets and a breast lump<br />

thrown in for good<br />

measure. I found out on<br />

Friday and on Sunday<br />

I spent five hours in<br />

surgery. I was home five days later and<br />

five weeks later started my Carboplatin<br />

and Paclitaxel chemo regime.<br />

Amanda Barnes: nobody<br />

knows the future.<br />

Photography, with thanks to<br />

The News, Portsmouth.<br />

Fast forward and I have been back<br />

at work full-time, post chemo, for a<br />

year. I’ve finished my dissertation and<br />

graduated with my masters in advanced<br />

which appears to come easily to them!<br />

These are the ones I selected for the<br />

display at my friend’s tea shop in<br />

Worcestershire.<br />

Seeing my pictures on the walls felt like<br />

such an achievement. Something that<br />

had nothing to do with cancer. When<br />

you live with this disease it’s hard not<br />

to be defined by it. The cheeky cows in<br />

my photos have no idea how they have<br />

helped me with this.<br />

• Keep an eye on Helen’s blog<br />

to see where her photographic<br />

exhibition will be displayed next at<br />

helenfawkes.wordpress.com<br />

clinical practice, travelled to Verona<br />

to watch opera in the open air, seen<br />

La Bohème at the Albert Hall, been<br />

on the Queen Mary to drink<br />

champagne in the sunshine on<br />

my birthday, bought a building<br />

site of a house and am enjoying<br />

choosing paint and bricks! Life<br />

is good - bracketed with three<br />

monthly checks that still make<br />

me worry and more CT scans<br />

than I would like.<br />

I still have my mets, but I also<br />

have a strong sense of purpose<br />

and a fabulous husband who<br />

is my soulmate and my rock.<br />

There is no way that I am ready<br />

for anything less than a fantastic life.<br />

Ovarian cancer hasn’t changed me,<br />

but it has made me acknowledge my<br />

spirituality and embrace my life. None<br />

of us know what tomorrow will bring<br />

and that’s just fine by me.<br />

Amanda Barnes, Havant, Hampshire.<br />

14 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together


postbag<br />

The comfort of words<br />

The <strong>Ovacome</strong> newsletter was my first link to other ladies who had been diagnosed<br />

with ovarian cancer, when I myself was diagnosed with stage 3c of the disease in<br />

May 2013.<br />

Reading other people’s stories gave<br />

me hope and made me realise that<br />

for many of us life does go on. So it<br />

was interesting to attend <strong>Ovacome</strong>’s<br />

members’ day this year and meet some<br />

of those people and the team who<br />

compile the newsletter.<br />

We all know the frustrations of being<br />

first diagnosed and learning that the<br />

cancer has been there a while and<br />

for many of us that it has spread. But<br />

what was heartening to hear was that<br />

the treatment of ovarian cancer has<br />

improved considerably over the past<br />

10 years and scientists and doctors seem<br />

to be on the verge of new treatments.<br />

Fingers crossed we will be enjoying life<br />

despite the cancer for years to come.<br />

What I also learned at the members’<br />

day was that several people were quite<br />

young when diagnosed - and there<br />

was me thinking that it only affected<br />

older women. I was aged 65. It was my<br />

youngest of three boys’ birthdays!<br />

I have been lucky on my journey<br />

with having few side effects from the<br />

chemotherapy - neuropathy in my feet<br />

is uncomfortable, but not painful and<br />

having mouth ulcers and losing my hair<br />

was tolerable. I now have a wonderful<br />

collection of caps and scarves.<br />

I was given four doses of Carboplatin<br />

and Paclitaxel, followed by debulking<br />

surgery - on my second son’s birthday<br />

- and two more rounds of the same<br />

chemotherapy.<br />

From February this year I have been on<br />

caelyx. This seems to be working and<br />

my hair is growing back. I just hope<br />

my immune system doesn’t collapse<br />

again and that I don’t have to have any<br />

more fluid drained from my abdomen or<br />

pleural cavity.<br />

We all have a different wish list<br />

of things we want to do. One<br />

thing I would like to do is see my<br />

grandchildren become adults.<br />

My 16-year-old granddaughter has<br />

set me a challenge to write a book<br />

of poetry - well it is more likely to<br />

be a booklet. My first attempt was<br />

about cancer and was written in the<br />

Living in the moment<br />

Jenny Hayes: ‘I feel<br />

like I’m on parole.’<br />

chemotherapy unit while having my<br />

fourth of six doses of caelyx.<br />

As a semiretired<br />

teacher of<br />

English as<br />

a foreign<br />

language<br />

I love<br />

language<br />

and find<br />

writing poetry<br />

cathartic.<br />

Sometimes<br />

poetry has<br />

a deeper<br />

meaning than<br />

other writing<br />

and it allows you to say things that you<br />

can’t any other way.<br />

Let me throw out a challenge to you<br />

all to have a go and write a poem.<br />

Maybe we can publish some in the<br />

next magazine.<br />

Send me yours to pat_abra@hotmail.com<br />

Pat Abra, Margate, Kent.<br />

was diagnosed in 2007 with breast cancer. My treatment was radiotherapy and tamoxifen with three<br />

I monthly checks with my oncologist. At that time I felt my oncologist was my knight in shining armour.<br />

Every visit to him, with his kind voice and caring personality, gave me another three months, then six<br />

months and eventually a whole year of freedom to live and plan for the future. I took every opportunity to<br />

enjoy life after breast cancer.<br />

Then in 2012 I was<br />

diagnosed with<br />

ovarian cancer,<br />

stage 3c, with the<br />

added bonus of being BRCA 2 positive.<br />

I was given chemotherapy and some<br />

hard to swallow statistics.<br />

As a result, I make carefully chosen<br />

plans for the future. I avoid getting<br />

into a relationship with a partner, and<br />

although I would love to, I won’t get<br />

another dog.<br />

Now I view my oncologist as my prison<br />

parole officer. I see him every three<br />

months and he gives me another three<br />

months to get on with things. Parole,<br />

yippee! Now that does make me live in<br />

the moment.<br />

Pat Abra: writing poetry<br />

can be cathartic.<br />

I’m fortunate that I run a couple of<br />

businesses which affords me to shop till<br />

I drop and if I want cheering up and see<br />

something I want, I will buy it.<br />

I am ‘on parole’ just now with my body<br />

behaving. I’ve just returned from a holiday<br />

to Dubai and I will eat cake today.<br />

Jenny Hayes, Leighton Buzzard,<br />

Bedfordshire.<br />

it together<br />

Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 15


fundraising<br />

A bake off<br />

challenge<br />

for summer<br />

The sun should be shining and<br />

it’s time to put your inner<br />

Mary Berry or Paul Hollywood<br />

talents to good use by holding a<br />

Big <strong>Ovacome</strong> Bake Off.<br />

All you need is a venue, contestants to bring along<br />

their bakes a judge or two and a Big <strong>Ovacome</strong><br />

Bake Off party pack which is available free to help<br />

members hold baking<br />

fundraisers throughout<br />

the summer.<br />

Why not pull out the<br />

gingham table cloths<br />

and host an event for<br />

friends and family in your<br />

own garden to help raise<br />

money for the charity.<br />

The bake off could be<br />

part of your village fête.<br />

Or perhaps you could stage a village verses village<br />

competition, asking local chefs to judge the bakes<br />

and create a bit of a fanfare by inviting along local<br />

dignitories, celebrities and press.<br />

The packs, sponsored by national convenience store<br />

chain Nisa, were originally launched for awareness<br />

month. They have been so successful, however, that<br />

<strong>Ovacome</strong> is making them available on-going.<br />

Each pack - available from <strong>Ovacome</strong>’s office -<br />

contains bunting, guidelines on how to run an event,<br />

recipe ideas, a certificate for the winner and even a<br />

branded tea towel to clean up afterwards.<br />

Further tea towels and also aprons can be purchased<br />

from <strong>Ovacome</strong> to use as prizes for the bake off<br />

perhaps, with respective retails of £5 and £10 a piece.<br />

Other merchandise - such as <strong>Ovacome</strong>-branded<br />

balloons and T-shirts to wear on the day - is also<br />

available to help your event go as smoothly as if<br />

Mary Berry were organising it herself.<br />

• For your free party pack and other <strong>Ovacome</strong><br />

merchandise contact Sonia Vig in <strong>Ovacome</strong>’s<br />

head office on 020 7299 6654.<br />

Ready<br />

baked<br />

Tens of <strong>Ovacome</strong> supporters have been holding bake offs since<br />

spring to help raise thousands of pounds for the charity.<br />

• Top fundraising bake off was an event organised by Kirsti Fox,<br />

who has won tea for two at The Ritz with <strong>Ovacome</strong>’s patron<br />

Jenny Agutter. Together with the<br />

Mildenhall Lions volunteers she<br />

raised £900 for the charity. They<br />

recruited local chefs to judge the<br />

Great Mildenhall Bake Off, which<br />

helped attract the media and also<br />

some 70 contestants.<br />

Contestants paid to enter, the cakes were<br />

sold and there was a raffle. Kirsti decided<br />

to have seven categories: a sponge of up<br />

to eight inches; a tray bake; cup cakes;<br />

a signature bake, scones; 12s and under<br />

and a showstopper.<br />

Most interest came from the children’s Kirsti and Andy Fox and<br />

Ann Taylor-Balls (left to right).<br />

section which had more than<br />

35 entrants. And the crowds were wooed<br />

with a four tier wedding cake and another depicting a beach scene.<br />

“It was fun, and I couldn’t have managed it without the help of the<br />

other Lions Club volunteers,” says Kirsti, who is now planning a<br />

parachute jump to raise further money for <strong>Ovacome</strong> this summer.<br />

• Elizabeth Buckley’s bake off, which<br />

she held at a friend’s restaurant in<br />

Sandbach, raised £555. She charged<br />

£3 on the door, to cover the cost of<br />

refreshments, combined the event<br />

with a raffle and sold the cake after<br />

judging.<br />

A fun day for all.<br />

She needed nerves of steel with just<br />

10 people signing up on Eventbrite the weekend before. In the end<br />

20 people baked, including five children, and it was a “truly fantastic<br />

fun day”, with tens of people attending says Elizabeth.<br />

She would like to give a special thank<br />

you to her friend Suzanne Gee who not<br />

only allowed the bake off to be held at<br />

her restaurant, Gee’s Kitchen, but also<br />

ran the Marbury 10K raising a further<br />

£305 for <strong>Ovacome</strong>. This helped bring<br />

Elizabeth’s final fundraising tally, which<br />

included donations for her posting bald<br />

photos of herself as famous characters<br />

online, to almost £1,600.<br />

Elizabeth Buckley (right)<br />

rewards entrant.<br />

16 Phone <strong>Ovacome</strong>’s nurse led support line on 0845 371 0554 it together

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