www.ovacome.org.uk TEA FOR THREE Top bake-off fundraiser wins treat at The Ritz with Jenny Agutter Newsletter winter 2014 THE WAITING GAME Turning anxiety into action MAKE IT A DATE Sign up for Members’ Day LABOUR OF LAB Ovacome funds bespoke research it together comments contact Ovacome Chief executive: Louise Bayne Support services nurse: Ruth Payne Susan Morgan-Walters Volunteer and information manager: Ruth Grigg Office manager: Sonia Vig Support line: 0845 371 0554 020 7299 6650 Email: [email protected] Administration line: 020 7299 6654 Email: [email protected] New address: O vacome, CAN Mezzanine, 49-51 East Road London N1 6AH Office hours: Monday to Friday 10am – 5pm. Follow Ovacome on Twitter and Facebook for daily news, or visit www.ovacome.org.uk Registered Charity Number 1058026 To register as a member of Ovacome please send your details to the following address or call the telephone number above © 2014 Ovacome 49-51 East Road London N1 6AH. OVACOME is a voluntary organisation and relies on donations The information gathered in this newsletter is from many sources and is provided for guidance only. Ovacome has made every effort to ensure that it is accurate but can make no undertakings as to its accuracy or completeness. All medical information should be used in conjunction with advice from medical professionals Finding your ‘safe place’ D ealing with a cancer diagnosis and all it may throw up is a very individual thing and there are certainly no rights or wrongs on how to go about it. On the one hand, the late actress Lynda Bellingham reduced her friend and presenter Jenni Murray to tears by her level headed frankness on Radio 4 about her decision to stop treatment. And on the other, my dear friend who has been sent home from hospital on palliative care refuses to accept the ‘p’ word and is busily researching her medical options. Both, of course, are admirable and you cannot compare individuals and their very different medical history or motives like for like. But what both do have in common is a coping mechanism: Lynda Bellingham wanted to bring back an element of control and my friend seeking protection from her situation. It’s all about putting your mind in a ‘safe place’ if you talk to the experts. For your so-called mindset can have an enormous effect on how you enjoy your life. This issue, which includes advice from wellness coach Samixa Shah (page 13), has plenty tips on coping mechanisms (see feature on pages 9 and 10). Why don’t you give yourself an early Christmas present and, if you haven’t done so already, discover yours. Happy reading! Juliet Morrison, newsletter editor. Time of change for Ovacome 2015 W e are entering a new chapter for Ovacome as 2014 draws to an end. Firstly, we are looking for a trustee with fundraising or finance management background, with the stepping down of Adrian Dickinson who has been involved with Ovacome since his wife Sarah founded the charity in 1996. As a trustee, Adrian has ensured that Ovacome remains true to Sarah’s vision while responding to the changing needs of women with ovarian cancer and their families. Adrian brought his personal experience and strategic management skills to the board. Unfortunately (for us!) he now lives in Japan, which means he is no longer able to fully contribute as a trustee. However, we are delighted that he will still be involved as a patron and we thank him for all his guidance and support (see page 6). We’re now also appointing a dedicated fundraiser to help raise the income we need to continue as a leading ovarian cancer charity from our new offices, in which we have moved from one side of Old Street tube station to the other. This comes after we recently extended our team with a second nurse, Susan MorganWalters, to join our support line: one of the most important functions and founding principles of Ovacome. Having been appointed chair of trustees in May, I am delighted to be able to lead the board at this time of change and am grateful to have the wisdom and expertise of Adrian as patron and my predecessor Noëline Young, who remains as a trustee. Front cover: Photography taken by Shona Morrison of Ovacome’s Big Ovacome Bake Off winner Kirsti Fox with her husband Andrew and Ovacome patron, Jenny Agutter. There’s lots of change, but we remain grounded in our mission to ensure that women with ovarian cancer are always able to access clear, reliable information, support and advice. Designed, produced and printed by Berforts Information Press Ltd www.informationpress.com Ovacome was founded in 1996 by Sarah Dickinson. Her husband, Adrian Dickinson, is a patron of the charity. Trustees to the charity are: Cathy Hughes (chair), Simon Chantrey (treasurer), Sean Kehoe (medical adviser), Clare Barsby and Noëline Young. 2 Cathy Hughes, chair of trustees. Phone Ovacome’s nurse led support line on 0845 371 0554 it together news Ovacome to fund research O is, for the first time, involved in the funding of research into finding more effective treatments to fight ovarian cancer. vacome This is thanks to a very generous donation made to the charity by a patient of Ovacome’s medical adviser Professor Sean Kehoe. The legacy - which was partly also aimed at supporting the charity itself - is being used for research into ovarian and ovarian like cancers. Professor Kehoe is leading a team of researchers at Birmingham University, where he works as a gynaecological surgeon. The aim of the research is to try to understand in more detail what happens to the tumour when it has been treated. “We want to find out how it changes,” says Professor Kehoe. “Does it become Professor Sean Kehoe: ‘many areas to explore’. altered in some way that may make it more resistant to treatments? “Normally, a tumour tissue is examined before treatment, a single point in time, when in fact matters are more complicated and dynamic. But with this research, using biopsies, we will look at the changes in tissue that occur during treatment, which may be a route to other therapies.” The work will also look at certain pathways in the tumours to see if by blocking the pathway the chemotherapy can be made more effective, or if the blocking itself is an actual treatment as well. “The main aim is to get new and better treatments to the patients. Such work is important and there are many other areas to explore. The big costs nowadays is often the technology used, and of course the researchers,” says Professor Kehoe. Ovacome will be recognised in any papers published and acknowledged in all talks and lectures Professor Kehoe gives at any meetings. If you wish to donate towards the Ovacome research centre in Birmingham University, then please contact the charity’s office manager Sonia Vig on 020 7299 6654. Click and send Christmas cards Ready for this Christmas, Ovacome has an online shop with over 3,000 greetings cards to choose from for any occasion including multi-packs and singles: www.ovacome.org.uk/visit-our-shop.aspx For those special individual cards, you needn’t worry about postage or rushing out to the post box either. If you want to save time or energy, you can have your message handwritten for you, and even have some confetti put into the envelope, and sent for you. But, if you’d rather do it the conventional way and write the card yourself then orders can be sent direct to your address. Ovacome is selling off its packs of 10 Xmas cards for £2 (see back page). Phone the office if you would like to buy some on 020 7299 6654. Festive Welcome Message inside reads: “Season’s Greetings” 160mm x 160mm it together Winter Beauty Message inside reads: “Season’s Greetings” 140mm x 140mm Phone Ovacome’s nurse led support line on 0845 371 0554 Et voila! Ovacome’s support services nurse Ruth Payne, volunteer and information officer Ruth Grigg and chief executive Louise Bayne (left to right) taking a well earned rest after packing for our office move just around the corner in East Road, Hoxton. We are still just minutes from Old Street tube station if you would like to come and pay us a visit. Phone numbers remain the same. 3 news Real-life ovarian cancer stories reach 100s of medical students T he national roll out of Ovacome’s Survivors Teaching Students project, in which ovarian cancer survivors share their experience with soon to be doctors, nurses and other clinical staff has begun with a bang. The education project, funded by the family of the late Dr Lisa Jayne Clark, has been reaching trainee doctors and nurses in the South East and Midlands. And the Clark family and friends have been boosting its coffers with fundraising Dr Lisa Jayne Clark: an inspiration. generating another £11,450 for this important step-changing initiative (see box). Teams of Ovacome volunteers have so far shared their experiences with medical and nursing students in London, Cambridge, Hertfordshire and Birmingham to improve knowledge of the signs and symptoms of ovarian cancer and promote the need for earlier diagnosis. Post graduate nurses attending a course at the Florence Nightingale School of Nursing, Kings College, London described their session in July as: “Very effective to hear actual stories”; “Amazingly informative”’; “A good reminder when seeing patients and assessing them”. A month later the STS volunteers spoke to 80 undergraduates at Cambridge University. Also, in October, STS teams were invited to speak to medical and nursing students at the University of Hertfordshire in Hatfield and at Birmingham University medical and nursing schools. Ovacome chief executive Louise Bayne says she is delighted. “STS has proved far more popular than we could have wished with requests much greater than anticipated. These very generous donations from the Clark family and friends are allowing us to take your experiences to the doctors and nurses who will be caring for those affected by ovarian cancer in the future. We are now looking forward to spreading the message with STS further across the UK,” says Louise. Memory of Lisa shines on T he halo effect of the late Lisa Jayne Clark, whose family have funded Ovacome’s vital Survivors Teaching Students initiative, continues to shine. Lisa’s cousin, Joanna Aspray, nominated Ovacome for a charity award scheme run by her employer Santander and was delighted to be allocated a bumper £5,000. Joanna explained in her application about Lisa Jayne’s story and how Ovacome is working relentlessly to Joanna Aspray awarded £5,000 by Santander’s raise awareness and to support women customer service adviser with the disease. Joanna also helped Kevin Mattinson her mother Beverley Smith and her (on the right) and the Windermere branch auntie Mary Park raise another £750 in manager Andrew a garden party this June, with a raffle, Hemming. bring and buy and cake sale. Santander also matched this payment with a further £700 donation. Meanwhile, a friend of the Clark family, Richard Stock who met Lisa Jayne just once, smashed his fundraising target by running the London Marathon this year and raising around £5,000 for Ovacome. “We are also very grateful to our volunteer presenters Jenny Hayes, Jackie Rose, Mary Raftery, Samixa Shah, Janice Wilson, Chris Robinson and Joelle Hill, and looking for more people to take part,” she adds. The programme is owned and trade marked by the Ovarian Cancer Nation Alliance in the US. If you would like to become involved, email Ruth Grigg at [email protected]. A lasting legacy O vacome is entirely dependent on donations. By leaving a legacy in your will it will help us to continue to support everyone affected by ovarian cancer. Although making or changing your will is a simple process, it is important to consult with a solicitor or professional adviser. Smaller changes can be made using a codicil form, which is available with guidance notes from the Ovacome website www. ovacome.org.uk or by e-mailing us at [email protected] 4 Phone Ovacome’s nurse led support line on 0845 371 0554 it together news Harnessing the help of MPs O and its members had the ear of more than 20 MPs at the charity’s parliamentary drop in this summer, where it launched a call to action report on improving ovarian cancer survival rates. vacome The report, which was based around a survey of 198 Ovacome members during April to May 2014, outlines the top five priorities that Ovacome wants decisionmakers to give in improving the outlook for patients with ovarian cancer (see box). It also includes an 11 point action plan for MPs to get involved, including writing a press release to the local paper, tabling parliamentary questions and meeting with key NHS managers at the local hospital (see box). MP Fiona Mactaggart: ‘You can change things.’ The event, which took place in July at the House of Commons, was a great opportunity for Ovacome members to raise their local and national concerns about the prevention, diagnosis and treatment of ovarian cancer. The charity’s ‘Ovacoming together: Making a difference for ovarian cancer patients’ report, has a series of recommendations that Ovacome hopes will be adopted by the Government, the NHS and the National Institute for Health and Care Excellence (NICE). Ovacome is asking its members to enlist the help of their MP at a time when they should be keen to raise their profile in the run up to the May General Election and should be open to this positive publicity. It has produced a campaign tool kit to help members go about this. At the recent drop in, MPs from across the leading parties took time out to listen to and have their photos taken with their Ovacome member constituent to be used in local paper publicity. Stephen Phillips Conservative MP for Sleaford & North Hykeham attended and has since written to the Secretary It points out that Stacey Loveday garners support from her local MP of State to while one-year Stephen Phillips. ask what is survival rates for being done early stage patients to improve awareness of the disease’s are better in the UK, outcomes for symptoms. He met Ovacome member patients diagnosed with late-stage disease are significantly poorer than Stacey Loveday, who had surgery for other parts of Europe. This, it says, could borderline ovarian cancer at the age of be because of low standards of care and 21, and now eight years later has the restrictions to the latest treatments. all clear. She told Stephen about her it together experience and explained how little awareness there was among young women of this type of cancer. Stacey wants every young woman, and every GP, to be aware of the importance of early diagnosis. After their meeting, Stephen said: “It was an honour to meet Stacey and hear about her experience of cancer treatment. A lot is being done to make young women more aware of cervical cancer, but it is important that they are aware of the risks of other cancers as well, particularly as cancer is far easier to treat if it is caught early.” Fiona Mactaggart, Labour MP for Slough, and herself an ovarian cancer survivor, told the group of around 40 fellow Ovacome members how important it was for them to be involved in this advocacy work by sharing their personal story with their MP. “Good luck because you can change things,” she said. Members’ main cancer priorities • Improving awareness of the symptoms among GPs, the community and women. • Personalising treatment plans for women with ovarian cancer. • Creating a greater awareness among women of what they should do if they have any symptoms. • Ensuring that all ovarian cancer patients receive a written care plan and better access to and information on available support groups. • In joint fifth place: Improving awareness of access to clinical trials and reducing variations in access to treatment. Phone Ovacome’s nurse led support line on 0845 371 0554 5 news Members’ Day 2015 Your personal invitation O vacome invites you to our 2015 Members’ Day on Saturday 16th May in London. This summer there will be an exciting line up of speakers to update you on the latest treatments for ovarian cancer and how to get by day-to-day with the effects of the disease. The day provides an opportunity to hear from some eminent speakers, to meet other members and share experiences and information. It is also an opportunity to meet Ovacome staff and feed your views to us, which can in turn influence the way Ovacome operates in the future. Complimentary refreshments are provided so please come and join us for lunch, have a catch up with old friends and make some new ones. Reserving a place If you would like to join us, please email us at [email protected] or phone us on 020 7299 6654. Ovacome is not able to provide accommodation, however we will send you a map and a list of suitable hotels in the area when confirming your place. Please let us know if you have any accessibility issues or if you have any special dietary requirements. The venue is fully accessible for wheelchair users. Tea, coffee and lunch will be provided with our compliments on the day. Make it a date Date: Saturday May 16 2015 Time: 10.00am - 4.00pm Cost: Free for members of Ovacome and £5 for non members. Venue: Conference Room A, CAN Mezzanine, 49-51 East Road, London, N1 6AH. Notice of Ovacome Annual General Meeting The Ovacome Annual General Meeting will be held on Saturday May 16 2015. 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 Annual General Meeting. The AGM will be held at 4pm at 49-51 East Road, London, N1 6AH. If you are an Ovacome member and would like to attend Ovacome’s Annual General Meeting please contact the office on 0207 299 6654. 6 Fundraiser wanted as Ovacome trustee O vacome is looking to recruit a new trustee to the board, after a move to Japan has led to Adrian Dickinson, the husband of the late Sarah Dickinson, who founded the charity, stepping down. The board of trustees is responsible for making sure that Ovacome is doing what it was set up to do within legal and charity guidelines, and within budget. Being a trustee means making decisions that will impact on the lives Adrian Dickinson: becomes a patron of people affected by ovarian cancer. As a trustee you will use your skills and experience to support the charity, helping us achieve our aims. As a board we need a range of skills to function in the best way to support the charity and would currently benefit from the expertise of someone with a background in fundraising or income generation to support our new fundraiser and help the charity meet its income goals to achieve our ambitions for the coming years. For more information on being a charity trustee visit https://www.gov.uk/charity-trustee-whats-involved. If you, or someone you know, would be interested in becoming a trustee for Ovacome please contact the chair of trustees Cathy Hughes: [email protected] Reply from Adrian Dickinson: “As some of you will be aware, the Dickinsons have moved to Tokyo on a long term assignment. We are enjoying a Far East experience with amazing food, beautiful countryside, rich culture and a chance to experience the whole adventure as a family. Given the distance, it is time for me to take a less active role in Ovacome. “Sarah would have been delighted to see how Ovacome has turned out and the calibre of the trustees that continue to guide and shape the charity. She, like I, would have every confidence in the leadership team and so I can step down with an easy heart. “I will continue to support Ovacome as a patron and will still be asking for donations. Ovacome, like so many charities, can only continue its good work as long as it can receive sufficient funding.” Phone Ovacome’s nurse led support line on 0845 371 0554 it together news Trial starts for relapsed women A for women who have relapsed ovarian cancer and have been platinum free for three to 12 months is underway, combining two drugs which have not been used together before. trial The drugs, fosbretabulin and pazopanib, target blood supply to tumours, destroying them, then stopping them from regrowing. Pazopanib is already used to treat some types of cancer. The biological therapy is a cancer growth blocker which stops cancer cells forming blood vessels that they need in order to grow. Fosbretabulin is also called CA4P, combretastatin or Zybrestat. It is also a biological therapy that targets the blood vessels, but it works in a different way. Fosbretabulin destroys the new blood vessels that form in the centre of a cancer. But it does not work so well on the more established blood vessels on the outside, so the cancer continues to grow. Researchers think that these two drugs may work well together because pazopanib destroys the blood vessels that fosbretabulin cannot reach. It is a dose escalation Phase 1b trial for 15-18 patients, which will then proceed to a randomised phase II in 120 patients in autumn 2015. It is open to women with ovarian, primary peritoneal cancer and fallopian tube cancer. PazFos trial giving hope N rinder Dhaliwal (below), who is being treated at the Mount Vernon Cancer Centre in Middlesex has been accepted onto the PazFos trial and was half way through her second cycle of six at the end of November. She said that the regime - a weekly infusion of fosbretabulin, for three weeks and then one off, and three pazopanib tablets a day - had made her very tired, but that she felt less nauseous than when she was on other treatments. Nrinder was diagnosed with stage 3 serous ovarian cancer in November 2012, aged 52. She has since relapsed twice and was found to be allergic to carboplatin while on the Aktres trial. Her original treatment was paclitaxel and carboplatin and de-bulking surgery. “I’m quite excited to be on this new trial and feel that I have nothing to lose,” she says. If you would like to be considered for the PazFos trial contact Professor Gordon Rustin at the Mount Vernon Cancer Centre in Northwood, Middlesex; Professor Gordon Jason at The Christie in Manchester or Dr Susie Banerjee at The Royal Marsden. For more details about the trial visit Cancer Research UK’s website www.cancerresearchuk.org Recurrent results A Dutch study, published in the British Journal of Cancer, has shown women with relapsed ovarian cancer responding to an intensive regime of cisplatin and etoposide. It looked at 98 women whose first-line chemotherapy had initially been successful, but who had later relapsed. The women were divided into three groups depending on the severity of their cancer. The response rate of the two groups of women who were least ill to the new treatment was 92% and 91%, which compares with a response of 50% and 20% to 30% with standard therapies. Among the group of women most seriously ill, 46% responded to treatment, compared with less than 15% for current therapies. This piece has been reviewed by Dr Sean Kehoe, a gynaecological surgeon and senior research fellow at the University of Birmingham. it together Preventative surgery plans A fter three years of lobbying by Ovacome, the Royal College of Obstetricians and Gynaecologists is calling for national guidelines to protect women from ovarian cancer by offering to remove their fallopian tubes once they have completed their families. Possibly up to 70% of ovarian cancer may arise from the fallopian tubes and doctors are suggesting that this surgery is offered at the same time as routine gynaecological or abdominal surgery, such as having a gall-bladder removed. Women at high risk of the disease because they have a BRCA genetic mutation are already advised to have both their fallopian tubes and their ovaries removed as a preventative measure. But around two-thirds of women who develop ovarian cancer are deemed ‘low risk’ with no family history. Ovacome’s chief executive Louise Bayne says: “It is our belief that this surgery could save thousands of lives each year.” Phone Ovacome’s nurse led support line on 0845 371 0554 7 ask the doctor Hormone therapy I ain McNeish, Professor of Gynaecological Oncology at the Institute of Cancer Sciences at the University of Glasgow (pictured), explains how hormone therapy can be effective in treating slow-growing relapsed ovarian cancer. Q: When is hormone treatment used? Hormone therapy is used in two circumstances. Firstly, when a woman’s ovarian cancer appears to be relapsing, but is doing so slowly. The commonest situation is when CA125 starts to rise, but there are no symptoms - in this circumstance, data suggest that hormone therapy can slow the rate of progression and thus delay chemotherapy. The other circumstance is as a substitute for chemotherapy in relapsed disease: often in patients again with slow growing disease and where chemotherapy may not be effective. Q: Does a tumour have to have oestrogen receptors (ERs) to work? The data from the Edinburgh study suggest that patients only benefit from hormone treatment (in the case of the Edinburgh study, it was letrozole), when the tumours express ER (oestrogen receptors on a scale of 0-300, there were no responses in tumours scoring below 199). Classically, low grade serous tumours are strongly ER (oestrogen receptor) positive. High grade serous tumours are often ER positive as are endometrioid. Clear cell carcinomas are, almost by definition, ER negative. ER is also expressed on rare types of ovarian tumour, especially granulosa cell tumours. Hormone therapies rarely work quickly, so they are unlikely to be of use in rapidly growing tumours. However, in 8 The evidence suggests that any tumour that is ER negative (i.e. does not express the oestrogen receptor) or even only expresses ER to a low level, is not going to respond. Although hormone therapy has been used for many years, there are very few proper randomised trials. The studies looking at hormone therapy have been rather small, but tend to show a similar effect. In a small number of women (10-15%), hormone therapy can produce responses (both reduction in CA125 and also tumour shrinkage on CT) and these responses can be quite long-lasting. However, very few of these studies report on ER expression within tumours, nor do they state which types of ovarian cancers have been included in the trials. Q: What hormone therapies are available? Q: Which women should ask to have their tumour tested for oestrogen receptors? Q: How effective is hormone therapy? slowly growing tumours that are ER positive, especially if women are feeling well, it is definitely an option. There is tamoxifen and two aromatase inhibitors - letrozole and anastrazole. There has never been a direct headto-head comparison in ovarian cancer. Their main use is in breast cancer, where there have been huge trials. There is also interest in a new type of hormone therapy called abiraterone, which works by inhibiting an enzyme called CYP17. There are lots of data on abiraterone in prostate cancer and a new trial in ovarian cancer is due to open soon. The PARAGON trial is investigating the effect of anastrazole in a whole series of gynaecological cancers - in addition to epithelial ovarian cancer, there are groups of women with endometrial cancer, low-grade uterine stromal sarcomas and ovarian granulosa cell tumours. The ovarian and endometrial cancer groups have completed their recruitment and so the only types of patients who can enter the trial now are those with the rare tumours (granulosa cell tumours and uterine stromal sarcomas). PARAGON will give us robust data on the response to anastrazole in a wide variety of tumour types, plus an assessment of ER and other parameters. A small phase II trial, called CORAL, is opening at the Royal Marsden Hospital, to investigate how effective abiraterone might be in ovarian cancer. Q: How does it work? Ultimately, many tumours use sex hormones (oestrogen/progesterone in women, testosterone in men) to stimulate their growth - thus when oestrogen binds to the oestrogen receptor, it triggers a change in the cell that causes it to grow and divide. Many breast cancers and nearly all prostate cancers are dependent upon sex hormones, at least initially - thus, if you can block hormones, you can slow the growth of tumours. Hormone therapies have revolutionised breast and prostate cancer treatment. In ovarian cancer, there is much less evidence that the tumours are as reliant upon hormones for their growth. Classically, the side effects are those of the menopause - hot flushes and night sweats. Aromatase inhibitors can also give muscle aches. This piece has been reviewed by Dr Sean Kehoe, a gynaecological surgeon and senior research fellow at the University of Birmingham. Phone Ovacome’s nurse led support line on 0845 371 0554 it together feature Waiting game W for medical test results can be so traumatic that the Labour party is pledging to reduce the time to no more than one week if the party gets into power in May’s election. aiting But for many women with ovarian cancer it is not just waiting for the next CA125 test or CT scan result, there are often three monthly, six monthly or yearly checks to contend with too. And with the level of anxiety that this can create it becomes vital to come up with individual coping strategies. In this position it is unrealistic to expect that you can train yourself not to worry at all, says Dr Kate Jenkins, clinical pyschologist at Salisbury District Hospital. “The main thing is to try not to think about it. Distract yourself, try relaxation techniques and mindfulness can be very good at helping people live with ongoing anxiety and reduce stress.” For it is all about managing these frightening emotions in an individual way, says Professor Maggie Watson, consultant clinical psychologist at the Royal Marsden Hospital in London and Sutton and Hon. Professor at the Research Department of Clinical, Educational and Health Psychology at University College London. Take five Dr Kate Jenkins suggests the following mindfulness exercise to help ‘centre yourself’ when you become caught up in unsettling thoughts and feelings. • Pause for a moment; • Look around and notice five things you can see; • Listen carefully and notice five things you can hear; • Notice five things you can feel in contact with your body, appreciating each before moving to the next. Describe the feeling to yourself, without saying whether it is nice or not. • If your thoughts wander then bring them back. “There’s no rule that says expressing emotions or hiding emotions is either a good or bad thing. The yardstick is what makes you feel better,” says Maggie. To find out what works for you, she says to ask yourself some key questions: • Do you need to talk about how you feel? • What happens when you talk about your emotions? • What do you want to talk about? • Who do you want to talk to? it together • Is something stopping you from talking? • What can you do? “Your answers to these questions may help you to decide if you need to talk and to whom,” says Maggie. “Mostly people want to talk and express their emotions to those closest to them; a partner, a parent, a family member, a friend. Sometimes you may feel that those closest to you can’t or don’t know how to respond or help with the emotions you feel. Sometimes you may not want to express your emotions to those closest because you know they are also having difficulty with worry; you don’t want to add to their burden,” she adds. However, despite this, expressing emotions can be a moment of sharing and of intimacy with those closest to you, says Maggie. “Expressing emotions is not only about worry, sadness or despair. It can also be about hope, humour and love.” Mindfulness and NLP (Neuro-Linguistic Programming) coach Amanda Street, used both disciplines to help Professor Maggie Watson: “no rules”. her cope when she was recently being treated for breast cancer. “In my experience it was important to calm my mind and not let it go into a negative stream of thought. I would make a conscious effort to turn such thoughts into how I would deal with a negative situation in a positive way,” says Amanda, who recommends downloading the Headspace meditation app, which teaches simple mindfulness techniques. “I’d also watch my language in thoughts and speech to avoid using aggressive words like ‘fight’ my cancer,” says Amanda. This gentler approach would act as a tonic to her mind while her body was dealing with the harsh chemo, radiotherapy and surgery. Phone Ovacome’s nurse led support line on 0845 371 0554 9 feature Visualisation - in which Amanda imagined how she wanted to be - was effective too, rather than dwelling on how she felt at the time. “I asked myself what do I need to put in place for my mind and body health now.” And with her NLP hat on it was more about looking at “well formed outcomes” in which she would try to prepare her mind and think about how she could respond to the different possible news from an appointment. Managing expectations is crucial says Dr Tracie Miles, president of the National Forum of Gynaecology Nurses and gynae oncologist nurse at the Royal United Hospital Foundation Trust in Bath. Get dates for results, so you know when to expect them and try to keep things in perspective. “If you have to wait to have a scan don’t panic and feel you have to go and pay £1,000 to have one privately. It might put your mind at rest for a few days, but invariably it won’t speed up your treatment plan and remember that tests have to be given within the NHS within a safe Dr Tracie Miles: “manage expectations”. timescale.” Be practical. If you can’t sleep then talk to your nurse specialist about your medication. Steroids, for example, taken at night to stop sickness can keep you awake and re-jigging the regime to take them earlier can make a massive difference, says Dr Miles. Meanwhile, Caelyx treatment can keep you awake with itchy feet or hands, relieved often with cream. Distractions and keeping busy can help to reduce how much you worry, with the following suggestions from Dr Kate Jenkins being effective ways to help improve mood: • Pleasant social interactions, including honest and open conversations with friends; • Hugs; Dedicating a specific time of day to think about your worries can help: a ‘Worry Time’ when you think about, talk about, or write down your worries and concerns, says Professor Watson. “This can help to ‘box in’ the worry and keep it manageable,” she says. Partners, family members, friends, others going through the same experience, might all be sources of help and support. Also you can ask your doctor if there’s any counselling available or any local support groups. Professional helpers can assist when you either have a difficult to resolve issue or there seems to be no-one else to turn to who can give straightforward and unemotional support during times of difficulty. Talk to your nurse specialist or other key worker who should be the gateway to all information portals you will need about managing your disease, says Dr Miles. Lots of hospitals have a Cancer Information Centre now too and of course Ovacome should be able to help. Relaxation exercises Progressive Muscle Relaxation is the deliberate tensing and then relaxation of each muscle group such as your feet, stomach, thighs and neck and shoulders. It is based on the idea that the body reacts to thoughts and events that make you feel anxious by tensing muscles. This tension can make you feel even more anxious. The exercises can help lower heart rate and blood pressure as well as reducing feelings of breathlessness, or feeling sweaty. The exercise is simple but it may take a few attempts before you are confident with it. You will be working with most of the major muscle groups in your body, but for convenience try progressing from your feet upwards. You might want to concentrate on one side of the body first and then the next. Focus your mind on the muscle group; Whilst breathing in, tense the muscles firmly for five to 10 seconds; As you exhale, suddenly relax the contracted muscles and let the tension be released, relax for 10 to 20 seconds; • A warm bath, with baby or partner; • Family activities, such as a walk in the park; • Taking part in experiences that make you feel competent, such as learning a new skill, cooking a speciality meal, or doing something for your family that no-one else can; Pay close attention to different feelings of tension and relaxation in your muscles. Practice for 10-15 minutes, twice a day for one to two weeks. • Sleep well (Ovacome’s spring newsletter will take a look at this); Consult your doctor if you have a history of serious injuries, muscles spasms and back problems. • Laugh; Source: Dr Kate Jenkins. • Practise relaxation (see box). 10 Phone Ovacome’s nurse led support line on 0845 371 0554 it together fundraising Tea with Ovacome 2015 A words from member Adele Sewell (pictured right) on how Tea with Ovacome 2015 is shaping up: few “Planning for Tea with Ovacome 2015 started early with a meeting in September with fashion retailer Apricot which has kindly supplied the clothes for our last two fashion shows and which will be doing so again next year. In October, a meeting was held at the May Fair Hotel to agree the details of what we need for the big day which this time will be on Saturday, 28 March 2015. Tickets went on sale on November 8, 2014 and incredibly, within 24 hours, all the early bird tickets were sold. This beats last year’s record when they sold out within five days. Regular tickets are still available however and can be purchased online using the link www.teawithovacome2015.eventbrite.co.uk and dress rehearsal day which is being planned for January. The photoshoot will be used for the event programme which tells the stories of all of our models. “The hunt is now on for models - women who have had or are living with ovarian cancer. If you would like to take part please email [email protected] or [email protected] as soon as possible. There will be a chance to meet all the other models at a photoshoot “For more information about the event please go to www.teawithovacome.org. Tickets can be purchased online using the link www.teawithovacome2015.eventbrite.co.uk “This week we have been meeting with other clothing retailers with a specific emphasis on those who provide clothing ranges with larger sizes in order to ensure that women of all sizes and shapes can take part in the fashion show. We are also looking for two hair dressers/beauticians who are willing to volunteer at the event to do the models’ hair, make-up and nails. At this stage we also need auction prizes and raffle prizes and items to share in our goody bags. If you can help with any of these items – clothing, hair, make-up, prizes or goody bags please contact [email protected] or [email protected] “Thank you everyone. Let’s make this event, our sixth, the most successful yet.” Helena gets the running bug B efore Helena Dillon started training for this September’s Robin Hood half marathon for Ovacome she could barely jog for the bus. Now she is a convert and says she enjoys rather than dreads putting on her trainers for a run. She completed the Nottingham race in three hours and seven minutes, no mean feat when she recalls being sick after her first training session round the block last November. for Ovacome, in a race that Helena said had her name all over it, with it coinciding with her parents’ anniversary and it being in Nottingham, the town where she grew up. “It was awesome. Being asthmatic and originally so Team Ovacome: Helena and her family. unfit it was Her husband, Steve, ran always going to be a challenge. But too in one hour and 53 minutes. And I absolutely loved it and despite tearing the couple raised more than £700 it together my hamstring on the way round, the adrenalin carried me through.” Helena, from Chessington in Surrey, ran in memory of her mother who died of ovarian cancer in 2006 after six and a half years of being treated with late stage disease, which doctors said at the time of diagnosis she would not survive for more than six months. “My son was just eight weeks old at the time and not only did she live to make a mark on his life, she got to know her two other grandchildren as well, which at the beginning we would never have thought possible,” says Helena. “Losing her was far more painful than running through the streets of Nottingham, trust me.” Phone Ovacome’s nurse led support line on 0845 371 0554 11 fundraising A prize win T Big Ovacome Bake Off winner Kirsti Fox and her husband Andy were treated to tea, cake and Champagne at The Ritz with the actress and the charity’s patron Jenny Agutter. he Kirsti, the bake off’s top fundraiser raising £900 for the charity, tied the prize in with a weekend in London to celebrate the couple’s 18th wedding anniversary. The high life: Kirsti and Andy Fox at The Ritz with Jenny Agutter. The couple dined with Jenny Agutter for a couple of hours, sharing stories about their 10-year-old son Haydn and Kirsti’s late mother, who died in December 2010, just a month after being diagnosed with ovarian cancer. Kirsti, who is a civil servant in the Ministry of Defence and her husband Andy, who owns his own cleaning business, were blown away: “We were treated to fantastic service, superb settings and amazing food. It’s a mustdo experience for everyone,” enthuses Kirsti. Since her mother died Kirsti has been on a mission to raise money for charity, working with the Mildenhall and District Lions Club volunteers to pull off her Great Mildenhall Bake Off, which attracted the media and 70 contestants. Loraine’s Teal Blue Ribbon Campaign motors ahead L oraine’s Teal Blue Ribbon Campaign, in which Kevin Stephens has pledged to raise £100,000 for Ovacome, is gaining momentum thanks to some very generous contacts. Madden as one of the charities to be supported at The Classics In the Walled Garden evening picnic he organises at Luton Hoo in Bedfordshire for car enthusiasts, raising £1,000 from the event,” says Kevin. Since his wife Loraine died of ovarian cancer in 2012, Kevin has been using his navy Aston Martin to turn heads towards ovarian cancer awareness. His DB7 Vantage Volante is often bedecked in teal ribbons, balloons and awareness material about the disease. It is fitting, says Kevin, as the car was Loraine’s favourite model. Kevin Stephens using his Aston Martin to turn heads for Ovacome. “Two lovely couples - Fran and Kevin, and Olivia and Gary - asked for donations to my campaign instead of wedding gifts,” says Kevin. “And the Loraine campaign was chosen by Peter 12 He has hit around £10,300 and wants to enlist the help of ‘team members’ to reach his £100K target, with collection tins in shops, friends’ support, his car at motor events and his JustGiving page. To support Kevin visit justgiving.com/loraine-stephens She is now planning to run another bake-off next summer. Kirsti has also completed a parachute jump for Ovacome, donating another £600. “Jumping out of a plane at 12,000 ft was such an amazing feeling I just had to do it again, but this time I persuaded my husband to have a go and am also trying to get a group together to raise lots of money,” she says. “Instead of dwelling, I want to use the experience to push myself to do different things.” • Ovacome would like to thank The Ritz for donating its afternoon tea as a prize for the charity, despite waiting lists of months to secure a seat. Runaway successes C ommunity staff nurse Lynne Macvicar has raised £800 for Ovacome which has helped her mother since being diagnosed with ovarian cancer in 2011 and a recurrence this year. Lynne (pictured on the right, below, with her mother Alexandra Kerr) wanted to challenge herself in a way which would raise local awareness as well as money for the charity, so with the support of RunArran, she completed a 10-week Jog Scotland course prior to competing in the first 5K ‘Gate to Gate’ to be held on Scotland’s Isle of Arran. • Brian Kent completed his tenth Bristol Half Marathon since starting running in 2004 in two hours and 10 minutes. In memory of his late mother he raised £225 for Ovacome, which will be matched by his employer. Big thanks to both. Phone Ovacome’s nurse led support line on 0845 371 0554 it together postbag Outliving my prognosis I was diagnosed with stage 4 ovarian cancer and given a possible six months to live, that was eight years ago and this year I was given the all clear. I don’t feel that I am an extraordinary person, but doctors say I am. I never did anything that could be seen as a sure-fire way to beat cancer, but somehow I did. A safe place Ovacome’s wellbeing columnist Samixa Shah answers your questions: Dear Samixa, I n July 2014, it was five years since my ovarian cancer journey began. While I am relieved to be in remission, I find each anniversary of being told that I had the disease difficult. I’ve always felt that as I got off relatively lightly, avoiding chemotherapy or radiotherapy, that I did not get the emotional support that I needed. I did not receive counselling and when I went to the local Macmillan centre I did not get beyond the reception. I remember being totally stunned hearing my diagnosis and wanting someone else to deal with all the issues that I suddenly found myself confronting. For my first chemo I bought myself a wig, I didn’t want cancer to take any more of me away. The treatment was successful and luckily I didn’t need the wig in the end, but what made cancer so real for me were the people around me who passed away. At the beginning it did not feel like I was one of the lucky ones. I was rushed into hospital, with what I thought was appendicitis. I had never known pain like it, despite having had two children. Then my life became a cycle of dreaded check-ups, every three months. Each time the build up to the appointment brought anxiety and dread. And then my fears came true and the cancer came back in in 2009, three years after the original diagnosis. I was lucky to have care from some great doctors and nurses, family and friends, but this wasn’t always the case. After time people don’t want to hear about your cancer stories, but I hope someone takes inspiration in mine. I am really pleased to hear that you are still in remission five years on. This year - I’m now aged 74 - I ticked off my bucket list: a dream holiday to Thailand spending time in the rainforest and on an elephant reserve. I can’t go back to BC (before cancer) but I am learning to move forward into the future. Alice Paterson, London. Although diagnosed with ovarian cancer I was fortunate that I only had to have a total abdominal hysterectomy, bilateral salpingo-oophorectomy and partial omentectomy. I was so relieved and felt as if I had been re-born. I should be thankful, and in my own way I am, but I cannot get rid of this feeling that my case was not taken as seriously as others. How do you think I can be more positive? Karen Frost, from Stafford. Dear Karen, It feels like you prefer to think about what did not happen five years ago rather than about what is happening now. It may be helpful if you started thinking about some simple goals for the next month, three months, six months, one year, two years and so on and try to focus on that. In this way you will start feeling excited about achieving something you have thought about and will feel really pleased with yourself when you accomplish something. You mention that in your own way you are thankful, but are finding it hard to move on. Something that may help is to keep a gratitude journal. Write down five to 10 things you are grateful for every night in a journal just before going to bed. You can be grateful for the same things every day if you like and you may well choose things we take for granted, such as ‘I am grateful that I was able to go out for a walk in the sunshine today’; ‘I am grateful that I could go out for a lovely meal’ or ‘I am grateful for my health’. Although this may seem difficult at times, do try to persevere because once you continue this practice every day for 21 days you will find it easy to continue and reap the benefits of a more positive outlook. I wish you the best of luck and please remember you can always talk to Ovacome’s nurse led support line - 0845 371 0554. Send your questions in to Samixa, who is trained in wellness and life coaching, to [email protected] it together Phone Ovacome’s nurse led support line on 0845 371 0554 13 postbag A sense of normality T he first alarm goes off around 6.20 in the morning. Now don’t get me wrong, I`m not jumping for joy at that stage but I am quietly happy. It`s the usual morning rush around: two children to nag to get ready for school, two adults dodging each other in the kitchen getting ready for work. Yes, two adults, as now I`m back at work! sympathetic and I had popped in to say hello as the months dragged by. So when we hit September I was celebrating the ringing of an alarm clock! I’m back at school, with a class of seven and eight yearolds. It is so busy that I forget about cancer, yes you read that right. It disappears from my mind for hours at a time! Let’s backtrack a little. At the beginning of January 2014, I was diagnosed with stage 3C ovarian cancer. There were no clues, until the ascites kicked in. I was put on the ICON 8 trial and started weekly chemo. I work with young children in a school and was advised to not work, to protect against getting bugs. I had surgery midway through and finally finished my chemo in July. I am on maintenance Avastin now. It feels normal, whatever normal is. It feels like my life BC (before cancer). I know it’s always going to be there, but for the moment it isn’t the be all and end all of my life. There is a joy to the return of old routines. When you get a diagnosis of cancer, you think about how much your life is going to change, and yes it does change, but it doesn’t have to change entirely, forever. I have been very lucky throughout You do mourn the loss of what you Dawn Baxter: ‘forgets about cancer’. this process. I’ve generally been fit and perceived was the course of your life, but it well with minimal side effects. I have a very supportive can still be there, hidden in the ringing of that alarm clock. husband, family and friends. My place of work has also been Dawn Baxter, Clanfield, Hampshire. Take our advice… O vacome members give their tips on how to get through chemotherapy in our new ‘Take our advice’ section. Amanda Cawthorn (pictured) from Biggleswade, Bedfordshire: “My top tips would be to cut your hair as short as you can if it is long. I went from very long to a bob as I could not face going any shorter at the time. But if I did it again, I would go much shorter which should hopefully avoid having to hoover the bed each morning. “I think the best advice would be when you get the chemo fog, to get out each day for a little walk. It really helps with fatigue and aching joints. At first you think ‘Why am I doing this?’, but if you walk through it, you feel so much better. “My Chillow pillow helps me with my medically induced menopause as hot flushes at night are terrible especially when you are not allowed HRT.” 14 Lynn Hill from Alrewas, Staffordshire (pictured below with her son Andrew): “My top tip probably would be to do exactly what you want to do when going for chemo, I spent five sessions in tears with every one telling me it is nearly over! After the first I went on my own and only the last one felt that I had made it and it was over! “If you can have some relaxing massage or aromatherapy immediately before (mine was provided by the hospital) it does help greatly with any anxiety and reduces it! “Get a wig fitting from a proper shop and seek professional advice on how to wear make-up during treatment, especially putting eyebrows on!” Phone Ovacome’s nurse led support line on 0845 371 0554 it together postbag Too busy to be unwell H i there, my name is Sarah Smith. I am 50, with two daughters, 19 and 26. This is what happened to me in the past six weeks. At the beginning of October, I was at the Liberal Democrat Party Conference in Glasgow - I am the prospective Parliamentary candidate for Dover and Deal, where I live, worked and brought up my children. Out of the blue, my tummy started to swell up dramatically. When I got back, I was enormous, like I was expecting twins. I went straight to A&E where they found I was full of ascites. My beloved mum died from ovarian cancer in 2011 so I knew straightaway what that meant. I am studying for a PhD in Cognitive Psychology at UCL so I’m proud to be in a trial at the university and to be part of the effort to improve treatment for women in the future. My studies have been formally 'interrupted'. It’s a great arrangement, I can continue working, designing experiments and writing but without any pressure. After much discussion with family and friends, and with the full support of the local party, I have decided to continue my political campaigning. I’ve posted an open letter to the people of Dover and Deal here http://ek.lib.dm/ a3Pc7. I’ve been surprised and delighted by how supportive people have been, including the local press and rival candidates! I am really Sarah Smith: fighting cancer and for a parliamentary seat. committed to Dover and Deal, I believe I can make a difference and I still think I am the best My diagnosis is stage 3c ovarian cancer - the most common type person for the job of MP. I don’t want this cancer to stop me, so – and I’m having chemo followed by an operation. I have gone from now until May 2015 it’s all systems go. into a clinical trial at UCLH which is testing whether a weekly Sarah Smith, Chillenden, Kent. dose of chemo is any more effective than a three-weekly one. Life is now ‘technicoloured’ A t this time last year I was busy preparing for a trip to Australia to spend the festive season with my brother and his family. Little did I know what lay ahead! On my return after a wonderful holiday, I went to the doctor as I was constantly running to the loo and thought I may have a urine infection. Within a couple of weeks I had been admitted for a hysterectomy. After my operation I found out that I had stage 1c ovarian cancer. What a shock! On my first visit to see my oncologist I asked if I could be part of a trial, as I knew Sheffield is fortunate to be an outstanding hub for cancer research at Weston Park Hospital and the university. I started on the ICON8 trial in March. For me it was important to make a positive contribution to helping others who may face cancer in the future. From the first time I set foot in the building, I felt supported, comforted and it together as if I was someone very special. I knew I had joined a very special and uplifting community! self. I have packed away my wig and am enjoying my new look! After cancer, life goes back to normal, but you are forever different… a new you… a new lease of life! I appreciate the little things so much more now. Life is in technicolour! I am being closely monitored by the trials unit and will be for several years… a real comfort. My treatment was in six cycles and lasted 18 weeks. I had been randomised into a group that meant I had carboplatin every three weeks and paclitaxel weekly. I got through it with the wonderful support from family, friends Cancer is a club and medical staff. that no-one wants The Cancer Support to join, but when Centre on the you do, you find hospital campus was that within that always there with a club there is so cuppa and a friendly much support and face to talk to. positivity from I joined a ‘Positive everyone. I am About Life’ group Lynne Levey: Enjoying her new look. a great believer there where I got to in positivity and how it can overcome know others in the same club! We still adversity… of course, only alongside all meet in a local pub now. the ground breaking treatments that will It is now over three months since one day eradicate disease. I finished my chemotherapy, and gradually I am getting back to my old Phone Ovacome’s nurse led support line on 0845 371 0554 Lynne Levey, Sheffield. 15 fundraising Sorted: 11th hour Christmas buying S looking for a gift or card for somebody special at Christmas? Then Ovacome might be able to help with its new online shop: http://www.ovacome.org.uk/visit-our-shop.aspx till From this site you have access to over 3,000 cards for every occasion from wishing somebody good luck at a hospital appointment to congratulating them on their wedding. Festive Welcome Message inside reads: “Season’s Greetings” 160mm x 160mm And you can save on Christmas postage too if you choose the option of having a personalised message beautifully handwritten in the card and sent direct to the person it is intended for. You can add some sparkle also by opting for the extra of confetti side. Alternatively, you can have the card sent to your address for writing yourself. All of this and you have the knowledge that for every card purchased a donation is awarded to Ovacome. To give you an idea of how much, for a 75p card Ovacome would receive 10p of that price. As well as single cards, Ovacome has 10-packs of Xmas cards (see right the designs available) which it is clearing at the bargain price of £2 a pack. You will still have time to make the Christmas post if you order from us quickly, with first class Christmas post having to be sent by 20 December and second by 18 December. Phone the office on 020 7299 6654 to order your packs of 10 from us now, or e-mail [email protected]. Winter Beauty Message inside reads: “Season’s Greetings” 140mm x 140mm Ovacome’s Christmas card 10-packs at a special £2 clearance offer. Gem of a gift range Photography by Andy Scaysbrook. If you are still looking for inspiration for that special Christmas gift, take a look at our bespoke range of teal-themed jewellery, with the colour representing ovarian cancer awareness. Necklace and earring set £44.00 Teal Bracelet £5.00 16 Phone Ovacome’s nurse led support line on 0845 371 0554 Earrings £5.00 it together
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