As the evenings begin to lighten, and thoughts turn to spring, so comes the time to tell you our plans for the new year. As always we hope to build on past successes, and move further on with meeting our objectives: to provide contact, support and information, and raise awareness of the horrible condition which unites us.
Your committee recently held its second strategy day. This was an opportunity to reflect on our direction, and change or reaffirm our aims. Usually when we meet, there is so much catching up with friends, and day to day management, that we have less time than we would wish for to look at our achievements, and not only where we are going but which route to take. The strategy day gives us that time. Much of the day was taken with addressing the success of Fone Friends network, and looking at the good and the less good therein. It really is a successful service, and one of which we are justly proud, but as with all things which rely on volunteers, sometimes vulnerable. Our Fone Friends co-ordinators are a fantastic group. All having experienced ovarian cancer in some way, they now help others through a very difficult journey. We feel confident that those of.you wishing to be put in touch with others in the same boat will be pleased with the results!
Publications and other information sometimes feels like painting the Forth Bridge! Always under review, and greatly in demand. We have received some excellent advice on how to improve our current stock, and we continue to keep a close watch to insure our information is of the highest calibre. Any of our many health care professional members who would like to help with this particular role would be most welcome! We are currently reviewing our web site, and feel it needs to be freshened up. As many of you know, not always an inexpensive undertaking, so any web wizards out there, please get in touch. Raising awareness, as many of you may know, has been an area of enthusiastic debate! It is always difficult to strike the right note. What is certain is that we will continue on your behalf to bring a greater profile to ovarian cancer amongst the general public. Last year we made some fantastic inroads, and this year we hope to capitalise on those successes. Once again, I ask for your help. In the past we have asked members whether they would be prepared to be interviewed by press/magazines etc. Those of you who have been called upon, have been FANTASTIC, and I hope the process was as painless as promised. I d like to tell you about a call I received last week. As a part of Ovacome Day last year, I was interviewed for a small piece in Woman magazine. I spent an hour chatting on the phone to a lady called Helena; and several weeks later the piece appeared. I thought nothing more of it. Last week I had cause to remember it clearly. Apparently a lady had taken the magazine on holiday, and upon reading the piece felt the symptoms described sounded familiar. On her return she was seen by her GP and later diagnosed with ovarian cancer. My heart goes out to her, but on hearing this I felt almost joy; for as hard as this position sometimes gets, I always said to myself: If one woman gets diagnosed a bit earlier, it s all worth it. Who knows if it has made a real difference, but it gives me renewed passion, and proved, if proof were needed, that we can make a real difference to families across the country. Who knows how many of the millions of people who read our members stories last year, will have cause to thank those members for taking that small amount of time to tell their stories. If you want to join our press list, and make a difference this year, please do contact the office. For those a little shy of the media, there are always many ways you can help, and the perfect start is Ovacome Day. Let s use this year s event to honour Sarah, our founder, who wished that there could be greater understanding of ovarian cancer. This time I know I can say with all sincerity: YOU CAN MAKE A DIFFERENCE!!!

Love as always
Louise

Welcome to the Winter edition of the Newsletter. Some of you already know me as I work in the office, but for those who don t I will just briefly describe how I became involved with Ovacome. I joined the committee in 1 999 just a year after my daughter Debbie died from ovarian cancer. She knew I would try and ‘do something' but I never dreamt I would become as involved as I have. My role as a committee member was publications officer. When Ovacome wanted me to produce a booklet about ovarian cancer I was quite overwhelmed but went about the business of setting myself up with a computer. Eventually it was published and you may have seen Living with Ovarian Cancer. I d like to thank Debbie Howells for her support and encouragement with this venture. I hope you will enjoy this issue: my intention is to encourage you to be as involved as much as you can be with the newsletter. My experience on the phone has shown me that you all have your own opinions so please tell me how you would like to see the newsletter develop. I know that there are many of you who are just too modest to submit articles, but have a lot to say, and let s not forget your family and friends - this newsletter is for them too, so come on, put pen to paper and write in.
In the spring issue we will be introducing a Problem Page, not for medical problems, but for emotional and relationship problems, and we are pleased that Sheila Dainow has agreed to be our ‘Agony Aunt' . Sheila is the author of nine published books, and is a counsellor supervisor and trainer. She is the mother of our very own Jo Wright, and has direct experience of supporting loved ones through serious illness. Sheila is well able to help with personal problems, and I d really like to welcome her on board. So please let those letters roll in to the office, addressed to her and marked confidential. Each letter, whether or not it is published, will receive a reply, and be assured that anonymity and confidentiality are paramount. We were trying to find a really interesting calendar for our members but couldn't, and thought what a terrific idea it would be to use our own photographs. So a photographic exhibition will be held at this summer, and the most suitable will be published in our very own calendar. More details in the Spring issue. January is a time for resolutions and promises to keep fit, but it really is too cold! Imagine going swimming? Brrrr. I've noticed that the afternoons are getting longer now and even though it s so cold I love walking with my dogs. As long as the sun s shining I m OK. Until the next time, keep well.

Francis

This year Ovacome Day, 8th April, falls on a Monday. It is always a challenge to find a unique event which both raises the profile of the charity and ovarian cancer, yet is fun for members, we always make a great day of it! This year we are organising a Conga against Cancer in London. Ovacome member Louise Bourke-Standen suggested this fun event to travel through London, and raise funds for Ovacome. A 15-piece salsa band have kindly given their time, and are organising the route. We hope to attract lots of press attention and meet the general public along the way.
We intend to start in a London park, and weather permitting enjoy a picnic together. Even if you don t feel well enough to join the conga, you could always walk a mile and hold a bucket! Even joining us for a sandwich in the British spring time will help, as we hope to have a press call, and numbers really do count. So, keep a space in your diary for SUNDAY 7TH APRIL and we'll let you know as soon as details are finalised. Many members do a fantastic job of hosting smaller events. We are preparing posters and stocking up on ribbons etc, as well as preparing press packs to give whatever help we can. Please do let us know about your event, and if we can we shall publish the details in the spring newsletter (due out in March).

I'm sure many of you were as surprised as me to see ovarian cancer getting headline coverage on 15th November. I woke up to find BBC News running the story in their breakfast news headlines - we were even the first non-war story! News at Ten and the BBC evening news both carried long reports about ovarian cancer, and interviewed patients. Prof. Ian Jacobs, our trustee and Director of the UK ovarian cancer screening project, was also interviewed. Ian talked about how screening had made a difference to cervical cancer, and said, "Now we hope to see this improvement matched in ovarian cancer.
The story began as a press release from the Cancer Research Campaign, calling for more attention to be given to ovarian cancer. It was released to coincide with the London conference of the British Gynaecological Cancer Society, of which lan is President,
and which our Chairperson Louise and member Ruth Payne both attended. The story highlighted the rise in ovarian cancer cases in England and Wales in the last twenty years. Our own Ruth Payne was interviewed by ITN - you may have heard her interview on Classic FM too, the office was flooded with calls from journalists wanting us to find women with ovarian cancer they could talk to.
Many national newspapers picked up the story: ‘Steep rise in ovarian cancer cases' (Daily Telegraph, 15th November), ‘Ovarian cancer up by a fifth (Birmingham Post), and I m sure that many of you will have seen local coverage of the story. For those on the web, there was a good article on the BBC News site (www.bbc.u.k./news - search for ‘ovarian cancer' ) and we managed to get Ovacome linked to the article so that people could find us if they wanted more information. It was good to see attention turned to ovarian cancer - it s not often that we have a high profile at national level. Some of the stories were also well put together - they emphasised the difficulty in diagnosing the disease, and how screening was at an early stage in development.
It s sad that the statistics - a 20% rise in ovarian cancer cases over the last 20 years - appear to be the only way of drawing attention to ovarian cancer cases. On a more positive note, Ovacome had a chance to influence stories by having members talk about their experiences. It is important to us that we have people we can call who are willing to do this - please have a think, and let us know if you would be willing to talk about your story in future.
Editor s note: if anyone who has been interviewed by the press could write in to tell us about their experience, we may be able to encourage more women to speak to the media.

Sheila was my Ovacome Fone Friend for nearly six years, I can t even remember who contacted whom first. We quickly found that we could talk easily on the phone together and share and support each other. Our phone chats were probably every few weeks and we kept in touch when one of us was ill and when well, learning more about each other and our home situations. When first diagnosed I knew little about ovarian cancer but obviously I gradually learnt a lot more. Sheila completely understood, because of our common experience, and to talk to her was a wonderful help at every time of need.
When Sheila was well I know she had happy holidays and times with her family and friends, and seemed to just ‘get on with life' as normally as possible. Her dedication to Ovacome was admirable, on two occasions she arranged small get-togethers for Yorkshire women,it was lovely to meet Sheila and to have a face in which to place the phone voice. We all shared our experiences, and formed bonds with each other. I know Sheila welcomed the opportunity of attending Ovacome meetings and conferences, and afterwards she would tell me about these. Perhaps her biggest venture was organising the Denby Dale Concert in order to raise funds for Ovacome. It was a wonderful musical evening which my husband and I thoroughly enjoyed.
Sheila was always honest, positive and sympathetic towards my concerns, and above all really caring. We both acknowledged our Christian faith to one another, and knew that we prayed for each other. Often a little gift or prayer card would arrive from Sheila to cheer me up. Sheila was a lovely lady who throughout her illness worked tirelessly to help others. Her family must be very proud of her. Sheila was a wonderful Fone Friend, and I thank God that I knew her.

Shirley Odom
Sheffield.

Running the Marathon is one of the most effective ways of raising money for charity. Over the last few years Ovacome has been privileged to receive thousands of pounds in sponsorship from the supporters of a really dedicated bunch of runners, who not only want to keep fit but have a real sense of dedication towards raising money for our charity.
Unfortunately members never know who is running for us, or how much money is raised. However, this year it will be different. Our runners are already out there in the cold, running at least two to three times a week, and I can assure you, as a veteran runner, that it s not pleasant at this time of the year when you have to really chalk up those miles. I often wonder why the marathon isn't held in September, so that runners can actually enjoy their training.

Matthew Walkey
Emmersons Green, Bristol.
My mother Gillian has ovarian cancer and has been receiving the newsletter for three years. I have completed the BUPA Bristol Half Marathon, and the Cheddar Half Marathon, both in good times. I started training in the first week of December, with the help of the Runners World website, which assumes that you are running at least 20-25 miles a week! I m really grateful to have this opportunity of raising money for Ovacome and raising awareness of ovarian cancer.

Dave Baldwin
Watford, Herts.
My sister in law Carol, a much-loved family member, passed away in June last year after a courageous battle with this vile disease. The pain her family has suffered, and continues to suffer, left me feeling helpless and totally inadequate. I felt that if I could do just something to help raise money for Ovacome, then perhaps in the future other families may not have to endure the heartache which we have suffered.
I started training in September, initially in the gym doing two miles a day on the treadmill, but now it is much colder I am having to train on the streets. However, looking on the bright side, I was 1 5 stone and I m now 14, so I m really pleased. I've never run a marathon before, so I m sure I'll be in for a lot of suffering, but I won t complain though. By January I'll be running 10 miles easily, and my target is 15 miles by the end of February running on a regular basis. All in all I think my training is going well, but when it isn't I think of Carol.

Rob Warren
Wroughton, Swindon.
I was delighted to be offered a place to run for Ovacome, as this will help me to fulfil a promise I made myself to help a cause which provided so much support to my wife ‘Jenny' in the last year of her life. Your support group and publications, even in the desperate situation in which we found ourselves, were a source of great comfort and support to us both. Jenny never gave up hope and because of her courage we were both able to continue to live full lives even when she became very ill. My training to date has been fairly low key with three short runs of 3-4 miles a week at lunch times, a couple of good swims a week and at least one game of five or six-aside football a week. I feel this will provide a good fitness programme on which to build. Hopefully I'll be running up to 10 miles by Christmas, then the training will become more vigorous, covering 30 miles a week. Before the end of March I'll try to do one or two long runs of between 18 and 20 miles.
The theory sounds good, doesn't it? But in practice it s more difficult on cold winter nights when a warm night in front of the ‘tele' offers an attractive alternative to pacing the dark streets.

Phil Brewster
Nottingham.
I decided in May last year that I wanted to run the marathon, when you see it on the 'tele' it looks great fun, doesn't it? My partner Lisa made me get my local gym to help me with a structured training programme, and to my surprise I've really stuck to it! I m now up to half marathon level and on course to do the big 26 miles next April.
Like most families, mine is no stranger to cancer. In 1 990 my father died from renal cancer; he had only been diagnosed three months earlier. This was very difficult to come to terms with. Then almost a year later my mum told me she had ovarian cancer: she's had to go through so much but she s shown so much determination, it goes without saying that I m proud of her. She's doing really well at the moment, so I don t mind suffering tired legs and blisters, especially if it will help other families in the future. I m a 34-year-old journalist working for Central News Television in Nottingham.

Fiona Palmer
Stourbridge, West Midlands.
I am 43 years old (I'll actually be 44 on marathon day). I work as a Branch Manager for Supply Teachers, and I'm ashamed to say that my training programme at the moment is minimal. However, I have run the marathon before and feel confident that I will be up and running soon! I attempt to run three times a week, but I absolutely hate going out in the freezing cold whilst my husband is in the warm. My dog ElIy is no comfort either, most dogs would love an extra walk but not Elly, who refuses to go out once she sees me in my running gear! I am running to raise money for Ovacome as my mum died from ovarian cancer 20 years ago when I was 21.

Sarah Harrigan
Muswell Hill, London.
My training is incredibly hard at the moment as I hate all these dark cold nights, but when I force myself to go out I usually end up by enjoying it and feel a great sense of achievement! I'm pleased to say that I have already been offered sponsorship money.

Judith Price
Watton, Norfolk.
I am married with two children and work as a chef in a school. Last year I ran the Great North Run with my dad, John Horan. I want to raise money for Ovacome as my mum was diagnosed as having ovarian cancer. Six weeks later, just before a hysterectomy, she died from pulmonary embolism. At present I'm running five evenings a week and have just torn a muscle in my leg. Though I'm told this is not serious, but I m having a physio look at it all the same.

Many people talk of the shock and devastation that they experience when first diagnosed with ovarian cancer. Life before this point may have been relatively predictable and plans for the future made with confidence. For some, there may be a considerable delay in diagnosing ovarian cancer as the disease can often mimic many other illnesses. Some people have said they even feel relieved to be diagnosed because, before, they felt their symptoms were dismissed as being ‘all in the mind' . As the shock of diagnosis starts to sink in, people can often feel a huge range of emotions including fear, anger, sadness and guilt. Once treatment is over, it is often assumed that these feelings will subside and that life will quickly return to normal. However, for many people the period after treatment is when they are only just starting to recover emotionally and it can cause some unexpected psychological reactions.
In the course of treatment a great deal of stress, both physical and mental, may have been experienced. You may have overcome many challenges and learnt new coping strategies and skills. Throughout treatment you may have coped by thinking about all the things you wanted to do once it was over. The end of treatment might therefore have been anticipated as a very positive moment and a reason for celebration. So it can feel very surprising and confusing if, when the time finally arrives that your treatment has ended, all you can feel is anxiety, insecurity, sadness, loneliness and fatigue. Many are confused by their responses at this point and do not know how common it is to have such reactions. We hope that by reading this article you will realise you are not the only one that can experience these feelings and discover that there are many strategies that may help you cope at this time.

Fear of recurrence
For many, coping with the fear of cancer recurrence and uncertainty about the future is the hardest part of finishing treatment. During treatment it can feel as if something is being ‘done' against the cancer. It is also often a very busy period where all your concentration and energy on a day-today basis may be directed towards coping with various appointments, treatments and side effects. So when treatment ends it is natural to have feelings of insecurity and anxiety as you will have more time to think about the possibility of recurrence and it may feel as though ihcre's nothing now ‘fighting' your disease.

Stressful times
People often find that certain events set off their worries and anxiety all over again. Triggers could be reading something in the paper, having an outpatient appointment, the anniversary of your day of diagnosis or hearing that someone else you know has cancer. If you know in advance that these events may raise your anxiety level, this may make it easier to reassure yourself and you can prepare to cope with it. These periods may be the time when all your hard work learning how to distract yourself, how to use relaxation exercises and how to challenge your negative thoughts may come in useful. Returning to work may be an important point in your recovery as, for many, it signifies a return to normality and the security of what life was like before cancer. However, it may present you with different anxieties, such as wondering what to tell colleagues and how to deal with personal questions. It may be helpful to think through in advance how you are going to cope with the reactions of others when you go back to work.
Many people also expect to go back to work straight away and forget that they are likely to be extremely tired
physically and emotionally after treatment. It may therefore be worth deciding what you are able to do and consider restarting on a part time basis if possible in order to look after yourself at this point.

Family and friends
Mentioned earlier is the isolation that people can often experience after treatment ends. This may be not only because of the reduced contact with nurses, doctors and fellow patients, but also because friends and family don t seem to understand how you are struggling with fears and anxieties. Partners, relatives and friends may stop talking about the cancer, treat it as past history or offer reassurance that there is nothing to worry about now. They may simply have no idea about your own feelings because you have not openly communicated them. Alternatively, their reactions may be to do with their own embarrassment when talking about cancer or they may just be feeling glad and relieved that they can have a break from the subject of cancer for a while in order to recover themselves.
Your family and friends will have their own emotional reactions to your illness and may be struggling with their own anger, fear and guilt. They may hide this in order to protect you, or you may feel that you have to protect them from how you are feeling. Open communication is again needed to establish how both parties feel they are coping with your treatment having ended. People will have limitations on what support they can offer you. One way to explore this is to spend some time identifying who can provide what (e.g. practical, emotional, financial, social and spiritual support) within your network of friends and family. Alternatively, you may find it helpful to consider a support group in order to meet other women with similar experiences and to hear how others have coped.

Keeping control
Very often, people talk about how they feel less in control since the cancer diagnosis and face uncertainty about their future. They describe how they sometimes lose confidence in dealing with issues that would previously cause no concern. One subject that often crops up, relating to control, is looking for information relating to their disease or treatment. People s information needs vary widely and is a very individual matter. Some find that they do not want to know any more than the absolute basic information, preferring to relinquish control to the doctors or nurses. Others find that finding out what they can and being involved in any decision making can help them feel more in charge of their illness and its management. Usually doctors wait for people to ask questions about expected outcomes or disease prognoses before giving unwelcome news. On a cautionary note, some find that the information becomes a burden to them as, once asked, the information cannot be retracted and it may create more anxiety. As a general rule, it may be helpful to you to think in advance about what sort of information you would find useful and to tell the staff what your needs are.

Facing the future
Adjusting to life after treatment means adapting to a new routine and sense of normal. Many people want to return to their previous way of life as quickly as possible and resume their old roles, activities and responsibilities. However, others describe feeling cancer has given them the push to reassess their lives and find out who or what is important to them. Your priorities may have shifted and some things may no longer seem so important or even rather trivial. One woman described to us her feeling of freedom after being treated for cancer as she started to be more assertive and say what she wanted and needed for the first time in her life!
Sometimes sharing experiences, even if they are negative ones, can bring people closer together and many people have told us that their relationships with partners and families are better since their cancer experiences. All in all, your life may have changed forever but it is never too late to maximise your potential to enjoy an excellent quality of life.

This is part of a longer article by Kate Scott (Clinical Nurse Specialist in Psychological Care) and Clare Dunnell (Specialist Sister in Psychological Care) from the Royal Marsden NHS Trust, which we do not have space to reproduce in full. If you would like a copy please contact the office.

CancerBACUP booklet:
What Now? Adjusting to Life after Cancer

CancerBACUP booklet:
Who can Ever Understand? Talking About Your Cancer

CancerBACUP booklet:
Lost for Words - How to Talk to Someone with Cancer

Resources
CancerBACUP
3 Bath Place
Rivington Street
London. EC2A 3JR
Tel: 0808 800 1234

Cancerlink
89 Albert Embankment
London. SE1 7UQ
Tel: 0808 808 0000

Macmillan Cancer Relief
89 Albert Embankment
London. SE1 7UQ
Tel: 0845 601 6161

Marie Curie Cancer Care
89 Albert Embankment
London. SE1 7UQ
Tel: 020 7599 7777

British Association for Counselling and Psychotherapy
1 Regent Place
Rugby
Warwickshire. CV21 2PJ
Tel: 0870 443 5252

Relate (National Office)
Herbert Gray College
Little Church Street
Rugby
Warwickshire. CV21 3AP
Tel: 01788 573241

Carers National Association Ruth Pitter House
20-25 Glasshouse Yard
London. EC]A 4JT
Tel: 0808 808 7777

This booklet is Jean Spelman's account of her experiences as an ovarian cancer patient. The following is a short passage from the book:
Hair today, gone tomorrow
Jean flushed the loo and watched the dark mass of hair disappear. If she was losing all her pubic hair, had the hair on her head started going? She d not noticed but then she hadn't been looking. She left the bathroom and went into the kitchen, running a hand through her hair as she did so. Aha! Her hair came away, just like stroking her dog! Over the next few days Paul followed her with the vacuum cleaner. It was like having a huge Dulux sheepdog in the house, in full moult. After a few days, when the weather was a little warmer, Jean wrapped a towel round her shoulders, took the Winnie the pooh comb and stood outside on the terrace. Combing and combing and combing, she spoke to the birds, telling them there was really top quality hair right here for them for the nesting season. She d imagined that her hair would come away in huge chunks, but it wasn't like that at all. Day be day each hair came out one at a time, and it was so cold too, blow the tattoos, she d have to wear a hat all the time!
Editor s note: lean s booklet is a really enjoyable and humorous account of how she dealt with her illness. What particularly stood out for me was lean s love of nature, and her ability to face new problems with such determination. Beyond the dark side of the Moon can be purchased from the office for £5.00. All proceeds will go to Ovacome.

My son-in-law recently took part in the Great North Run. He kindly chose to run in aid of Ovacome for me, an ovarian cancer sufferer. I am pleased to enclose cheques to the value of £585, generously donated by friends and family in Cambridgeshire and North East England. My daughter, granddaughter and I lent support at the event, sporting Ovacome balloons and ribbons.
Although, as I gather from your newsletters there is an active Ovacome support group in the north-east of England, we did not see other Ovacome supporters amidst the many charities represented. However, I am sure you have done well from other runners as well.
My son-in-law is Mexican and he ran with two friends dressed as the three amigos! This attracted the interest of the local press, The Sunder/and Echo, and their picture of the group is on the right. We were disappointed that no mention was made to the charity he was running for, although the reporter was given this fact - typical male, I suppose, who did not consider ovarian cancer newsworthy. Shortly after the run, I was fortunate enough to go on a Mediterranean cruise. This was a wonderful treat, having just finished a second course of chemotherapy at the beginning of August. My health caused no problems on this trip. Prior to arranging my holiday I did contact you regarding the problem of obtaining travel insurance. The cruise company (P&O) would not accept cancer patients on their own insurance. I actually insured with the company used by the travel agency we booked with, Premier Travel, a local Cambridgeshire firm. I
have details of this firm which may help other members. The insurance cost £36 for 1 6 days travel with an excess of £100 should I have to cancel the holiday and £250 should I have needed treatment for a cancer-related condition whilst away. I thought this was reasonable and as I fortunately kept extremely well throughout the trip, my insurance cost no more than a normally healthy person s. I made fairly extensive enquiries about the matter, which ranged from wildly expensive to downright rejection. I had similar quotes to the one I used from the Post Office and from Saga Insurance (for those of us over 50!)
Thank you, Ovacome, for all your help and support. When I found you last year just after my diagnosis, your newsletters were and still are a great comfort, I feel much less alone with my problem.
Joyce Dolphin
Ely, Cambs

Editor s Note: it sounds as lithe run was great fun for the runners as we/l as your family, but I know how disappointed you must have been when they didn't mention Ova come in the newspaper article. In view of your experience when we approach the press in future let us be more insistent about mentioning Ovacome.

It s not every day you wake up in a cramped camper van, don wet clothing, silently wolf down three bowls of museli, drag sore limbs onto a crumbling bike and cycle 100 miles in the rain! Nevertheless, between 8th and 18th of August last year this is precisely what I did each day to complete a charity bike ride for Ovacome.

The Land s End to John O Groats bike ride is known as The Great British Bike Ride and has been a target of many an amateur cyclist since its inception in 1 880. The first recorded riders took 1 3 days, a staggering achievement given the rudimentary nature of their bikes and the poor quality of the Victorian roads. Not to be outdone, I set out to complete the ride in 1 0 days; however I had the luxury of tarmac, and a dedicated support crew consisting of my wife Helen and our two children (Jake 3 and Holly 2). Also my sister-in-law, Sarah, gave invaluable backing over a three-day period. I departed Land s End at 10 am on 8th August 2001, cycling a scenic route and sticking to minor country roads to avoid the main trunk routes and their associated traffic.
The first few days passed without major incident, and by the end of day 4 I had cycled nearly 400 miles to Elfesmere and was feeling remarkably fresh.
The next day disaster struck, I ripped both cycle tyres in Runcorn and waited by the roadside for 3 hours whilst my wife rushed back to meet me with spares. This incident left me with four hours of daylight and a further 70 miles to travel; I made it, but injured my knee in the process. From that point on the ride became more about enduring pain and discomfort and the earlier days of euphoria were receding fast. A couple more days of painful pedalling and further mechanical troubles saw me in Scotland and I headed up to the Mull of Kintyre with a brief skit around Arran to raise the spirits.
Crossing Scotland, through Oban past Fort William and along the Great Glen to Inverness, conditions were unpleasant as I was buffeted by holiday traffic and shaken by terrible road surfaces designed more for coaches than cyclists. Finally, after 1 0 days and the immeasurable help from the support team, I camped in Dornoch with one day to go for completion. The last day s cycling was fantastic, a beautiful run up the East Coast of Scotland via Wick to John O Groats itself. I finished at 2.45 p.m. on 18th August 2001,tired and in pain, but (mostly) intact.
The ride raised £1,150 for Ovacome through sponsorship and the sponsors generosity was the driving force that helped me to complete The Great British Bike Ride.
David Barter
Swindon, Wiltshire.

Editors note: what an amazing achievement, I hope you've recovered, David, I m sure your family is glad to have you home again.

This year I felt so proud of my son as he set off to cycle The Great British Bike Ride to raise money for Ovacome, and as we tracked his progress throughout the ride I reflected on all that has happened in the last six years.
Life is great! I have three adorable grandchildren who help to fill the gap that was left when I had to retire from teaching small children, and I m so lucky to be enjoying retirement with my husband. A very special thank you to Ovacome for giving me support, information, something positive to do and most of all .. ..friendship!

Jenny Barter
Lyneham, Wiltshire

Editor s note; Jenny has recently learnt that some radiation treatment which she received has caused some damage to her bowel and she now has to live with a modified diet. She would be p/eased to hear from anyone who has had similar problems. Jenny is one of our Fone Friend co-ordinators, who has given so much to countless women who have come into contact with her. She can be contacted through the office

Doctors and nurses rarely talk to women about sexual issues when they are diagnosed with ovarian cancer. One reason why sex is neglected is lack of knowledge about the problems that occur, so doctors and nurses are not sure what advice to give. I work for Leeds University and have carried out a study with doctors, nurses and patients to find out how ovarian cancer and its treatment affects sex.
Many of the women I spoke to thought they were the only one experiencing changes in sexual activity and found it reassuring that they were not alone. I hope that by reading this article, if you are having a sexual problem, you too will feel reassured that this is not unusual and be encouraged to talk to someone about your situation.
I have split this article into two sections - how sexual activity can be affected from diagnosis and through treatment, and how it can be affected after treatment. Quotes from the women involved are included, as they are real examples of how they felt. Not all the women experienced all the problems discussed below. I have included a range of problems to show the different ways in which sex may be affected - you may be able to relate to some of the things said by the women involved in this study, or you may find that you have similar experiences in the future. I hope that my study (which has been published in a medical journal for doctors) will increase the awareness that sex is affected, and that doctors and nurses will start to talk to more women and help them with any problems that they may experience.

Diagnosis and treatment
As expected, the diagnosis was a big shock. At first many women were concentrating on the impact on their life, the need for chemotherapy, and the suddenness of changes in their health, and not really thinking about sexual activity:
‘It was such a shock, it is so quick, I wasn't in a fit state really. Then you have your life to organise'.
The removal of their womb and/or ovaries, and the physical effects of the operation, affected how women felt about sex. Sexual activity was still quite low priority for many women after the operation. Some women did not have sex whilst they were having chemotherapy. This did not bother most women, as they were concentrating on having chemotherapy and coping with its side effects. Others wanted to carry on having sex:
‘At first when my hair came out I felt like a monster. I felt nobody likes me, I suppose having sex was important because it showed you were still attractive to your partner and losing the hair didn't matter'.
Some women found that their feelings about themselves had been affected:
‘I didn't know how he could kiss me when I've got this? And especially when I didn't have any hair'.
‘It took me a bit to get over the surgery. You feel like you're not a woman any more, I was so upset'.

After treatment
After the treatment many women started to think more about sexual activity. Lots of women found that their interest in sex had changed - quite often they found it was less. Some women found that they had no interest at all:
‘From my waist down I feel dead inside me. There is no emotional feeling whatsoever. It was just like someone flicking a switch. It s gone completely. It s upset me getting used to that feeling'.
Most women were not sure why their interest in sex had changed, and would have liked a doctor or nurse to have told them that this might happen so that it was not a shock when it did. Some women were surprised by how they felt when they did have sex again:
‘I was so relieved the first time we had sexual relations I burst into tears. He said "what s the matter?" and I said, "I never ever thought that I would ever feel anything again". I just thought I would be so numb and horrified'.
Some women experienced dryness or pain when they had sex:
‘It s all so painful, I m that tender inside. You can't do anything at first, you feel different inside and more tender and you've always got to be real careful.

However, over time many of these problems reduced and women started to enjoy sexual activity again. Lubricants such as KY Jelly can be very helpful if you experience dryness and are available at all chemists. Some women were frightened of sexual activity:
‘It s just fear. Fear that I might have done something that I shouldn't do. And, I mean it s a//in my head. If you get the slightest pain or anything you think something is wrong. It might hurt something or damage my inside or cause more problems'.
There is no evidence to suggest that intercourse causes damage - if you are worried at all about this, please talk to your GP, or your consultant or nurse at the hospital. Many women found that the changes in their feelings about sexual activity affected their relationship with their partner. Some felt under pressure to continue having sex to maintain their relationship:
‘That sort of relationship doesn't matter to me. I m doing it basically for my husband s sake'.
Some couples did not have sex again after the diagnosis and the women felt guilty:
‘It worried me, would he stay with me? Would he go off and have an affair?'
One woman had not completed her family and felt that her partner would leave her because she was no longer able to have children.
Despite these fears, the partners did stay with the women, whether or not they were having sex:
‘We are so close now, it just doesn't matter'.

Comment
This study showed that many women experience problems with sex after being diagnosed with ovarian cancer. I would like to stress, though, that women rarely experienced all of these problems - most just experienced one or two, and many problems eased over time. I would like to thank the women who were involved in this study for their time, and for sharing their thoughts and feelings with me. I hope that their openness will encourage doctors and nurses to talk to women about the possible effects on their sex life and on their relationship with their partner, and that women will not feel as alone when trying to cope with changes in their feelings about sex.

Editor s note: I d like to thank Maxine for allowing us to share the results of her study on a subject which has been sadly neglected. I m sure that members will feel more confident after reading this article to ask for he/p. Please write in and share your experiences with us, not only those who have ovarian cancer, but also their partners (male or female), they might even make us chuckle! Please address all letters/articles to me and mark them confidential for the Newsletter Editor Confidentiality and anonymity will obviously be respected.

Another year on and another great achievement! The Fun Run round Hyde Park was a great day enjoyed by so many cancer sufferers, relatives and friends. This year I persuaded three friends to take part as well as my daughter and sister-in-law and they really found it an uplifting experience. Last year I vowed to come back and run the course, but because of recent chemo I had to settle for a walk which still only took 57 minutes.
Hopefully I'll be able to take part again next year and persuade a few more friends to participate and raise even more sponsorship money for Ovacome. They do a really good job of keeping us all informed of new treatments and personal achievements of many Ovarian Cancer sufferers and obviously need as much funding as possible to continue their sterling work.

Linda Morton
Enfield, Middlesex.

Editor s note: This year I m definitely going to enter the Flora Light Fun Run, anyone can do it, as Linda says ‘you don't have to run, walking is fine too'. So let's get an Ovacome team together, and make a real day out of it. Contact the office for details.

Keep well during chemo
I would like to pass on my experience of keeping well during my recent chemotherapy treatment (carboplatin and taxol). I paid special attention to what I was eating and made sure I had plenty of fresh fruit and vegetables. I incorporated a lot of garlic and ginger into everyday salads, and I also drank lots of fluids and loads of water. I m a qualified reflexologist so I was able to give myself some treatment for any pain or discomfort. I do hope this information will be of some use to others. If anyone who lives close to my area and would like to have reflexology, I would be only too happy to do this.

June Morgan Greete
Ludlow, Shropshire
Tel. 01584 810233

Oocyte donation
I was told I had ovarian cancer at the age of 18, and luckily became a member of Ovacome. I've really enjoyed reading inspirational stories, and have learned so much from the newsletter. I m now 26 and have been given the all-clear, and have six monthly checks-ups. I was so young to have my ovaries removed, and am now unable to have children of my own. My consultant referred me to our local reproductive unit, where I found out that there is a national shortage of potential oocyte donors, the waiting time for treatment is not just months, but years. During my first visit I was told that you had to be 25 to be put on the waiting list, and it could possibly take ten years before I might be helped. At the time I was 23, and I feel so strongly that when someone is only 1 8 when her ovaries are removed, special allowances should be made so that she goes on the waiting list much sooner. Having said this, the doctors at the Reproductive Unit in Cardiff have been very supportive, keeping my partner and me informed of any change. I would also be interested to know if there are any events happening in South Wales for Ovacome Day (or any other time).
Editor s note: if you would like to contact Clare please phone the office.

Too much hair?
I wonder if there are any other members who have had a similar experience to mine (and two of my friends) we have all had the same treatment (carbopiatin and taxol) and are really distressed to find that we have been left with a very fine beard, and downy hair on our faces. Two of us are taking HRT, and wonder if this has anything to do with it, any suggestions?
Angela Horseman
Solihull
Editor s note: Angela can be contacted through the office.

More on memory loss
May I make a public reply through your pages to Marylyn Blackmore who writes (Summer 2001) to ask whether others have experienced side effects like hers, i.e. memory loss and impairment of verbal skills. I was so relieved to read her letter as I have always been one of those women who carries her diary in her head. I had Carboplatin and Taxol as Marilyn had and I too often found - and still find - my memory poor, especially my short-term memory. Often I cannot recall what I did yesterday, unless I have written it down. I still find myself double-booking my free time! During treatment I also experienced inability to find the words I was looking for and, since I specialise in words as I am a writer, this was a dreadful thing. Also I lead a reading group and have done so for three years: each time I go to it now I find myself having great difficulty recalling people s names, something for me that has always been unheard of.
Like Marilyn s GP I supposed it to be due to shock. I never mentioned it to anyone, but behaved like Marilyn, trying to find ways of coping with it. However, after reading Marilyn s letter I can t continue to believe that shock is to blame. I hope, Marilyn, that your difficulties are diminishing rapidly by now. And if there is anyone else out there suffering a similar affliction my heart goes out to her. The side effect of treatment which most upset me was hair loss. I wrote a great many poems about how I felt. I enclose this one.

Dread of Hair Loss during Chemotherapy Treatment
What shall I do the day when I wake up
To find my hair spread upon my pillow
But separate from me?
How can I meet my face
That morning in the mirror?
What shape will my skull be?
Will its skin be dark like
All the rest of me?
Will it shine forlornly under lamps
And go about upon my body
Like a question mark?
Shall I cover it,
Pretend it isn't there?
Or shall I wear it boldly, like a stare?
Oh but how shall I sweep up the deadlocks
Without much grief and weeping?
How shall I reckon with the morning when
I find my hair become a stranger to me?

Be warned!
My wife Stephanie was diagnosed as having ovarian cancer, she duly had surgery followed by chemotherapy.
We have contributed to private health insurance for 30 years and maintain our contributions even though we are now retired. As we know, no private health scheme accepts anyone with a chronic condition.
When, as in Stephanie s case, an acute life-threatening condition emerges in a private health scheme member, the scheme management may define the condition as ‘chronic' and abrogate all treatment and surveillance for the condition arbitrarily so defined, in other words the scheme management made the decision to ‘write off' the scheme member, in this case my wife Stephanie.

That management consults ‘a medical advisor' , it is said and in my wife s case, imposes the ‘duty' of notification upon a registered nurse. It is these personnel who have to implement a small print clause enabling the writeoff. Of interest is the absence, anywhere in the scheme rules, of printed warning to the effect that any condition which is, or becomes, malignant will at some point in time, be declared ‘chronic' .
It seems reasonable to advise subscribers from the outset that carcinomatosis is likely to be defined as ‘chronic' at some point soon after acute phase treatment and so be excluded from private health scheme support. Many will have contributed huge sums in ever-rising annual premiums only to find themselves declared ‘chronic ... and out' . Of course, a member with metastatic ovarian cancer can still expect to have an ingrowing toenail surgically treated, and as long as any postoperative infection of the nailbed does not attract the definition ‘chronic' can still expect that antibiotic treatment and dressings for the infection will be supported by the insurer.

There are now several schemes, which have glossy brochures detailing features and benefits. The costs are set out, but the limitations and exclusions are glossed over... .until the harsh reality must be revealed. Much is made of the concept of these schemes and that private hospitals greatly benefit the NHS, but in fact it is the NHS that has to pick up the private health insurers dumped cases, dismissed by way of the unpublicised but ever present faculty built in to all insurance schemes: "the write-off" clause, a "small print" inclusion. In most branches of insurance there is a tacit acceptance adopted by the insured, in respect of certain perils, but in healthcare, and especially among the most vulnerable....? Is this to continue without widespread disclosure?

Peter Walsh
Chingford London.

Editor s note: If anyone has had a similar experience to Peter and Stephanie. please let us know.

On 17th August 2001 we held for the third year running a "Dancing on the Lawn" evening at our local cricket pavilion, in aid of Ovacome. We hired a band who played on the veranda, while partygoers paid £5 each to sit under pergolas in candlelight on a thankfully warm summer s evening. We ate (veritable banquets), drank and were extremely merry, in memory of our darling daughter Kirsty, who lost her baffle against ovarian cancer in February 2000 at the tender age of 26 years. We love and miss her so very much, we will never get over her loss, but know that she would want us to do all that we can to support Ovacome, an organisation that brought her so much hope and comfort. In some small way we would like to think she is helping to save others by continually searching for better treatments and a complete cure for this terrible disease.
Our evening was capped by the unexpected appearance of Phil Vickery, Gloucester and England rugby player, who donated a signed rugby ball for the raffle, and his signed rugby shirt which was auctioned. The evening raised £1,150 for Ovacome, I enclose a photo of myself and Phil, and would like to thank all the wonderful people who worked so hard to make the evening such a terrific success.

Editor s note; It sounds as if you a/I really had a very special evening, although I m sure tinged with much sadness for yourselves, family and friends. The thought of a beautiful summer s evening conjures up an image of warmth, / hope the summer s not too long in coming!

My wife Shirley died on 12th October 2000. She had no symptoms of illness until 15th August, was diagnosed with ovarian cancer on 18th September and died five days before she was due to have a hysterectomy, of pulmonary embolism. That is another story.
My daughter Judith (35) was due to run the Great North Run 2000, just two days before her mum s funeral. During her mum s illness she did not train, but eventually decided to run, rather than let down her sponsors, who were donating to the village school where she lives in Watton, Norfolk. During our dark days we both resolved to run the Great North Run in 2001, for two ovarian cancer charities, Ovacome and ROC.
Our training this year was spasmodic. For me the gradual build-up was progressing well, until I had a calf muscle injury in July. After that I was wary of running too hard or for too long, for fear of suffering further injury nearer the race date on Sunday 16th September. For Judith, with two daughters of her own and a full time job, training was never easy, but she managed regular runs with her friend who also ran at Newcastle. As Judith had run before she knew the ropes, and had booked us into a hotel in Newcastle on Saturday night, near enough for us to walk to the start the next morning. We took two cars for three runners and the two members of the support (booze) team, Judith s husband Sid, and her friend s husband. On the Saturday, the runners just had time for an evening meal before retiring early, while the support team tried to drink Newcastle dry. They had much competition, as this was the evening when Newcastle United had beaten Manchester United in a thrilling 4-3 match.
On the morning of the race, the runners were up at 7 am for a substantial breakfast, while the support team needed a lie-in! We started walking at 8 am, with a gradually increasing number of people towards the start. The support team merely had to rise, pay the bill and reach the finish in South Shields by about mid-day. The soles of my feet began getting hot after 3 miles or so, and by 5 miles they were burning. This is a known problem, and I quickly recover if I stop. I was willing Judith to say she needed to stop, but after 8 miles I had to give in and stop. There were plenty of drinks stations, a large crowd cheering us on, and bands everywhere, all seeming to play jazz. We stopped twice more to walk for short periods, and so our average slipped to below 11 minutes per mile.
The worst part for me was a steep downhill section about 2 miles before the finish, which was difficult on the thigh muscles. We were then on the final mile along the sea front at South Shields, where we met the support team. The finish was also well organised (we finished in 2 hours 27 minutes), and soon staggered along to collect our teeshirts and medals. It was then a case of collecting our bags, getting in our cars and driving home. We got home at 8.30 pm, and it was very difficult walking then! I ran in an Ovacome teeshirt and Judith ran in a ROC vest. We both had suitable messages about Shirley on our backs.
We have raised over £1 ,300 so far, with a little more to come. I have sent £500 each to Ovacome and ROC, but am accumulating the rest until the London Marathon. I will never do anything like this again, but Judith is hoping to run in London. It is a lottery to gain a place, but Judith has two chances, on her own or maybe a place with Ovacome if that fails. We hope that through our efforts, and generosity of our friends, this "silent disease" will be beaten, and other families saved the heartbreak that we now have.

John Horan

Editor s Note: Judith now has a place on our marathon team (see page 4) and will be running for us in April.

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