Regular features

Letter from the Chair

As hints of spring begin to appear, the Ovacome Committee and its activities are also blossoming. So I thought it would be helpful for our members and readers to understand a bit more about the Committee members who work extremely hard to keep the Ovacome garden well tended.

Many do not realise the intensity and huge workload involved in keeping a young charity like Ovacome going as strongly as it is. We now distribute the newsletter to almost 3000 people. Debbie Howells works into the wee hours of the night, making sure that thousands of women, nurses and others can be kept well informed about ovarian cancer. Our corporate sponsors of the newsletter, Bristol-Myers Squibb, lend a much-needed financial hand to help us meet the ever-increasing demand for (and cost of) the newsletter not an easy feat!

And the effort that is needed to organise Ovacome Day our annual recognition of Ovacome founder Sarah Dickinson's great vision for an ovarian cancer support network. Or the daily effort Louise Bayne and Ruth Payne put behind the Adopt-A-Hospital programme, attending and speaking at conferences that raise Ovacome's profile with the healthcare and hospital community.

And what can I say about the FoneFriends network? Karyn Connor has worked so tirelessly to bring the network together to ensure that it offers the quickest and best access to callers who are in great need of the support we were set up to give. And how much of that support is given by Diane Chapman, who seems always to be available to anyone and everyone who needs to talk, needs advice on nutrition or on finding their own way through a spiritual self-healing process. And Ian Jacobs, our medical adviser, who manages somehow! to find the time to help us through our growing pains and offer us sound medical advice, as well a terrific general counsel.

Then there are our other Committee members, such as Adrian Dickinson, who keep us true to Sarah's vision for Ovacome and, as Secretary, keeps us on track in developing the charity in a truthful and manageable way. He, along with David Grant who controls our finances, continues to be the backbone of running an organisation that has grown far bigger than any of us had imagined. And finally, Margaret Yarwood, who continues to give her time to helping us raise the money to keep these activities running.
Why am I writing now to applaud their efforts? Because this year has seen such significant growth in membership, in services and in awareness of the organisation that it seemed fitting to let those of you who are newer to us know a little bit more about what goes on behind the scenes and to say thank you for your continued support to those of you who have been members for longer. You are all the reason why the committee remains so dedicated.
Madeleine Gold

Letter from the Editor

Welcome to the Spring issue. My favourite time of year: the buds are beginning to open, giving an array of colour to the garden and the skies are turning from grey to blue. As it begins to warm up it reminds us all that summer is on its way.

Well, I am now settled in my new home in Southampton and have been kept incredibly busy, not only with the administrator's role, but in decorating and restoring our new home to its former glory.

It has been a very busy quarter for Ovacome. Our membership is still growing by the day and it is inspiring that we have so many ladies out there willing to offer their services to help our cause. I hope you all enjoy this newsletter and thanks to all of you who sent in letters or called to congratulate me on the newsletter. It is messages like these that give me the encouragement to continue to provide this publication.

As was mentioned in the Special Edition Newsletter, we have seven people running (or maybe walking) the London Marathon for our charity this year. If you would like to sponsor one of these runners please call me at the Ovacome office, or alternatively send a cheque to the address shown on the back of the newsletter, stating that it is for the London Marathon.

Thank you to all of the members who have continued to raise both awareness and funds for Ovacome over the last quarter, may I please encourage you to continue to do this. We are still looking for people to Adopt-a-Hospital, especially in Scotland, the North and the Midlands. If you can help please call me in the office and I can give you more details. If you need any posters, ribbons, collection boxes or balloons (a new edition to our publicity material), please call and I will arrange to send them to you.

Congratulations to Barbara Pike, our raising awareness co-ordinator in the North. She has worked incredibly hard to arrange an Ovacome stand in the Metro Centre, Gateshead, on 8 April. As well as ladies who have had ovarian cancer themselves, a specialist nurse from the regional centre for gynaecology will be on hand to talk to people visiting the stand. Everyone is welcome, women with the disease, their families, friends of sufferers and anyone who wishes to know more about ovarian cancer. Please try to go along to share your experience and help to promote ovarian cancer. There will also be features in the local press nearer the time.

Finally, just to let you know that the Christmas cards raised nearly £3,000 last year. Thank you to all members who purchased them. If you are interested in designing a card for Christmas 99 please send your design in whenever it is completed. Good health.
Debbie Howells

FoneFriends

Like any other illness, ovarian cancer is unique; it has its own peculiarities, symptoms and treatments. When I was diagnosed I wanted information and support that reflected this. However, almost no written information was easily available and I didn’t feel my local cancer support group met those needs. This is why I was keen to involve myself with Ovacome FoneFriends. We have a network of women throughout the UK who have faced what you are going through now. They have experienced various diagnostic tests, surgery, complimentary therapies and the full range of chemotherapies available to us.

Many of the women who have contacted the network have made firm supportive Friends, alternatively some women and their relatives have benefited from one-off calls answering specific questions about the illness. Obviously our FoneFriends are not qualified to advise on medical matters but are more than willing to answer questions based on their own experience, and many are very well informed about ovarian cancer.

If you would like to talk to someone, call the Ovacome number and you will be given the name of two of our “front line FoneFriends”. These women take turns on a rota basis so that someone is always available to take your call. They can listen to your concerns empathetically and will try to answer any questions that you have. If you wish, they will then pass on your details to your local FoneFriends area co-ordinator. She has a list of FoneFriends in that geographical area and will aim to introduce you to one or more women.

Sadly I have to mention for those who wrote or spoke to Janet Ahlers that she recently died. Our thoughts are with her husband and family.

If you would like any more information on Fone Friends, please call our administrator or call me on 0181 461 2460. Best wishes,
Karyn Connor
Fone Friends Coordinator

From our postbag

Local contacts wanted
I am a member of Ovacome, diagnosed with Stage III in July 1998. I have had a radical hysterectomy and radiotherapy for endometrial cancer Stage I which developed separately, but at the same time as the ovarian cancer. I have had four out of six chemotherapy treatments (carboplatin and Taxol). The half-way CT scan showed that the smaller tumours left after surgery had gone and the largest one had reduced a great deal.

I would be interested in talking to other women in the London area, particularly anyone who is at similar stage of treatment. In the New Year I will be associated with the Merton, Sutton and Wandsworth Health Authority’s response to the forthcoming report on gynaecological cancers from the Royal College of Gynaecologists, as one of two patient representatives. I would like to get in touch with any women treated in the Merton, Sutton and Wandsworth Health Authority to feed back their experiences to the report review. This would be women treated at St George’s, St Helier and The Royal Marsden (Sutton).

I am feeling very well and have nothing but excellent treatment from St George’s (once I'd persuaded my GP I was ill and not merely overweight!). I am now back at work, doing shorter days than usual and can be e-mailed (mstiles@history.org.uk) or telephoned at home on 0181-767 0986. If anyone needs to talk urgently, try me at work during the day on 0171-820 1939.
Madeline Stiles
London

Is anybody like me?
I was diagnosed with ovarian cancer in 1996 and received Taxol and carboplatin chemotherapy. I am still, just over two years later, suffering the side effects of the chemotherapy. I have spoken to many people who say that it takes a while for the chemotherapy to wear off but I am feeling very isolated because this has been going on so long. Also I am 55, single and have no children and as yet have never managed to speak to anybody in the same position as me. Are you? If so please get in touch with me via the Ovacome office.
Patricia Jupp
Essex

A good read!
I was diagnosed with ovarian cancer in January 1988 and had a laparotomy and biopsy the following month. I then under-went a course of carboplatin chemotherapy on 1 April at Walsall Manor Hospital. My family was absolutely devastated by the diagnosis. My son, who lives in Scotland, made an appointment for me to see a homeopathic doctor, Jan de Vries. I had received only one treatment of chemo when my CA125 count came down from 800 to 12. I took homeopathic medicine twice daily in liquid and capsule form. Half-way through my series of eight treatments my CT scan showed excellent results. By September, the oncologist said that the mass of fluid which had been around my abdomen was no longer there; a large lump "down below" had gone; and the mass on top of my stomach had also disappeared. Although he could not say that everything had completely gone, I am now in remission and receiving three-monthly checks. I am 66 and believe that chemotherapy and homeopathy, together with a positive attitude, have worked for me. My son is quite pleased too!

Jan de Vries has written a book entitled Cancer and Leukaemia – An Alternative Approach (ISBN 1 85158 136 7), which I have found most helpful.
Betty Austin
Staffs

Help for men
About 12 months ago, I e-mailed to say that I'd be willing to be a Fone Friend to help other men dealing with ovarian cancer. Sadly, my wife Wendy died back in July after a very courageous fight. Her cancer took a very rare course, appearing first as changes in the ovary (with no apparent spread), and then in the lungs and in the bones. Our oncologist told us that, although he had worked in this field for many years, Wendy was the first patient he had treated where the disease had moved in this way. I have recently spoken to two ladies who were very upset to hear of Wendy’s death, but I hope I was able to be of some help and comfort to them. I would very much like to be involved with Fone Friends, as I feel that the experiences which Wendy and I went through could be of help to others facing similar situations. My telephone number is 01686 625493 and my address is 90 Sycamore Drive, Newtown, Powys SY16 2QL. I look forward to hearing from you.
John Bridge
Powys

Sertoli Leydig
I was so pleased to read Mrs Smith’s letter “Be aware” in the previous issue. At last I had found someone else with a Sertoli Leydig tumour. With kind help from the ladies in the Ovacome office, Mrs Smith and I were able to have a long chat about our experiences with Sertoli Leydig tumours. We’d had similar early symptoms and even the same wrong diagnoses of polycystic ovaries before getting the right diagnosis and treatments in 1994. My cancer was only in Stage I but it was producing large amounts of testosterone and I had one ovary removed without any chemo-therapy. Mrs Smith’s tumours had reached a later stage, making huge amounts of oestrogen, and she had to have a full hysterec-tomy followed by chemotherapy.

Even if there are only two women diagnosed with Sertoli Leydig tumours each year in the UK, there must be more of us out there. These tumours are thought to be extremely rare and doctors may only see one or two in their whole career. This may account for the initial misdiagnosis given to Mrs Smith and myself. Let’s see if, together, we can compile a useful list of our common symptoms that could then assist doctors to make a correct diagnosis as early as possible.

If you or anyone in your family has had a Sertoli Leydig tumour or “lesion”, we would love to hear from you. Please do contact us via the Ovacome office.
Barbara Pike
Newcastle-upon-Tyne

My chance to help
I was diagnosed with Stage I ovarian cancer almost six months ago. I’ve completed my chemo-therapy and after two major operations, losing quite a bit of my female anatomy, I came through. After I’d been diagnosed with this “silent killer” at the age of 35, and because I was so positive, I was determined to beat this. I had wonderful support from my doctors and nurses, in particular from my surgeon. However, I was very taken aback to discover there was no great emphasis on ovarian cancer. Patients whom I met and became friendly with didn’t want to speak about their experiences, and I respected that. It was at this time that I realised that someone has to raise this issue. Time was an ingredient I didn’t have a few months ago, but now I feel I must go out and raise awareness. I went to Cancer Research and to an ovarian scanning unit, and both were very helpful and willing to get involved. It was at this time that I heard about Ovacome and Sarah Dickinson’s story. Ovacome has been very helpful and will do all they can for me to set up awareness here in Ireland. I have already started ideas for major fund-raising for Ovacome and I am in the process of writing my story for one of the magazines here. Eventually I want to go live on to one of the chat shows to help the campaign. I am grateful to Ovacome for giving me the opportunity to write this article. I will never have the chance of motherhood, but I can give the chance to so many women by alerting them with my awareness campaign. So come on all you Irish volunteers – please come and help me.
Martina Graham
Dublin

With complements – Diane

Just after Christmas, whilst on one of my monthly visits to Dr Schellander for my hyperthermia treatment, I spent a few very enjoyable days with some good friends in Kent, before returning home.

One evening, relaxing in front of the television, we found ourselves watching one of a series of programmes reviewing the lives of some of Britain’s best-loved comic entertainers.

This particular slot featured Tommy Cooper. As I listened to the commentaries of his fellow comedians, who had obviously loved and admired him, I found myself falling into helpless fits of giggles. Tommy Cooper’s antics as he slapsticked his way through his conjuring tricks were hilarious.

His simple unsophisticated humour gave me half an hour of rib-aching laughter – wonderful exercise for the insides – and also left me relaxed and I the best of spirits. I had really been “taken out of myself”, transported to a world of innocent, childlike idiocy.

Laughter
This incident reminded me of the story of the man who, in the final stages of cancer, was told that there was nothing more that could be done. Determined to keep his spirits up, he went home to bed and decided to spend his final days, forgetting the doom and gloom of his situation, cheerfully watching his collection of humorous videos.

For the next three weeks he laughed his way through hours and hours of comic situations and, back to robust health!

Oh that it could be so easy for all of us! Nevertheless, there is evidence that our state of mind can have a profound effect on the body and improve the immune system. So, perhaps we should all try to get family and friends involved in creating an atmosphere of humour and light-heartedness in which we never allow ourselves to dwell on an uncertain future.

Dreams
Another thing we can do is to make plans for the future and set goals in the firm belief that we can achieve them and, above all, as Lawrence Le Shan said, “learn to sing your own song”.

Do the things you have always dreamed about but have been putting off. Even little things can make a difference to your mind-set, letting your subconscious know that you value yourself and believe you are worth doing things for.

There is another amazing story about the woman with breast cancer told that nothing more could be done and that she had only months to live. “If there is anything you have ever wanted to do but have put off, now is the time to do it,” her doctor advised.

She took his advice, went home, drew all her money out of the bank and without hesitation went on the world cruise she had always dreamed of.
She had the time of her life and, returning home six months later, she reported to the doctor, looking tanned and healthy. Not a little surprised at her apparent good health, he sent her for tests. A few days later they met again in his consulting room and he told her the good news that they could find no sign of the cancer. She was completely disease-free!
You might expect that she was pleased – overjoyed in fact; not so! She was furious and complained bitterly that she had spent all her money and what of the future! He might have replied “health and life!” That is all we need.

We don’t have to be rich to appreciate a beautiful sunset, the sweet smell of a flower, or a baby’s cry. We must learn to enjoy each moment and love, laugh, live our dreams and engage mind, body and spirit in the will to live and believe that it can make a difference.

Well, following my own advice, I have just booked myself onto a weekend’s garden design course. In another life, I think I was a gardener and now, armed with some fresh ideas, I will have a whole summer of digging and planting to look forward to! Well, if it turns you on . . .
So, go on, push the boat out – do something loony!!!
Diane Chapman

Ovacome in the news

Val Webster is the new Area Coordinator for Hampshire and the Isle of Wight. She has been a member of Ovacome for 10 months and has recently been busy promoting Ovacome in her designated area. In September an article about Val was published in her local paper and I am now taking the opportunity of including it in our newsletter for your information.

When you have read it, I am sure you will all agree that Val is a very inspirational lady, and I, for one, gain a lot of strength and determination from reading her story. I also thought it would be good for our readers to see this article to encourage them to go to their local paper to raise the awareness of both ovarian cancer and Ovacome.

When you meet Val in her neat home in Twyford what strikes you most about the divorced mother of two is her resourcefulness and strength of character. Despite having undergone major surgery and extensive chemotherapy for ovarian cancer, she is very calm about the traumatic past nine months which have turned her world upside down.

She had just moved house when she started feeling unwell and in the run-up to Christmas kept putting off seeing the doctor. “I just thought I’d get the move and Christmas over first,” she said. “Besides which I didn’t really think it was anything serious – just something hormonal or related to my age.” At first the doctor suspected irritable bowel syndrome so Val changed her diet and started acupuncture therapy to try and relieve the symptoms, but to no avail. She eventually went back to the doctor who sent her for a scan. “I felt terrible, as if my womb was prolapsing,” she said. “I couldn’t eat properly because my intestines were up the creek. My stomach felt as if there was nowhere for food to go, I was very uncomfortable.” Just five weeks after her first appointment with the doctor, Val found herself looking at an ultrasound scan which revealed a large ovarian cyst. The following week she went to Hammersmith Hospital to have what turned out to be a malignant tumour removed but that was not the end of her troubles.

“They told me that the cancer was well progressed and had started to spread,” said Val who admits she was very frightened by the news. “I thought I might die soon and I started to think of all the things I wouldn’t see. Like my children, who are in their twenties, into their futures and perhaps getting married.”

The news Val had cancer was a double blow for her family. Five years ago Val’s younger sister Hazel died from cancer of the uterus and Val was terrified of breaking the latest news to her 86-year-old mother, Florence.
“I knew she would find it difficult to cope,” said Val. “My mother went to Australia to be with Hazel before she died and I knew what she would be thinking if she heard that another of her daughters had cancer.” In the end Val told her mother as well as friends and close colleagues at Hampshire County Council, where she works as an assistant county youth officer. “It was my way of coping with it,” she said. “The support I got was absolutely incredible. I did not feel I had to be strong all the time as all these people were rooting for me.”

After the operation to remove the tumour Val had chemotherapy but alongside conventional medical treatment she also tried complementary therapies. “You have to trust what is right for you and I made use of all the available resources,” she said. “I felt the cancer was a sign that my life was out of balance and I needed to retake control.”

Her first point of contact was with Alison Keen, a Macmillan nurse and gynaecological oncology specialist at the Royal South Hants Hospital in Southampton where Val had her treatment. “Alison was a tremendous help, she was there to explain things I didn’t understand about my treatment and all the options and services available to me.”

One of the agencies she put Val in touch with was the Southampton-based Wessex Cancer Trust where Val received counselling to help her come to terms with the cancer and a free course of massage therapy. “This really helped me to relax – it was something for me and not the cancer,” she said.

Val also used visualisation techniques, imagining that her body’s immune system was fighting off the cancer cells, and believes this played an important part in helping her recovery.

The cancer is now in remission and Val is feeling fitter than she has for a long time but she has this warning for other women who like her might be ignoring symptoms and putting off going to the doctor.

“I would urge women to seek help as soon as they feel unwell. It might turn out to be nothing serious but it could be cancer and the quicker that it is picked up the better”.