Regular features

Letter from the Chair

Welcome to our summer newsletter. Following the second Ovacome AGM, we now have a larger committee with a range of skills, and we shall all be working together to meet our aims. So that you know who we are, we have each written a paragraph to introduce ourselves to you (see page 4). As a committee, we have agreed to divide into task forces to consolidate and improve the services we have already set up in our first year. The taskforces will work on the following areas :

• Publications, including the newsletter
• Fone Friends
• Objectives and means of raising awareness
• Fund-raising
• This should enable Ovacome to continue to make our second year as productive and as successful as our first.

We are all deeply saddened by Sarah's death but we will work together to ensure that her valuable legacy, Ovacome, will continue to reach and support all those that need it. I am sure that you will all join me in extending your thoughts to Adrian, Michèle and their family and friends. We hope that many of you will be able to join us in September to celebrate Ovacome's first anniversary and Sarah's life and achievement. If you are able to attend please do fill in the form and return it by 29 August.

I would also like to encourage anyone able to offer something as a prize for a raffle or for auction to contact Caroline Elliott.

Finally, I would just like to say that this will be my last Letter from the Chair. At the end of September I shall be handing my role over to Caroline Elliott, because on 20 December I am getting married and three days later we are taking off on a six-month around-the-world adventure. I know that Caroline and the committee will ensure that Ovacome continues to flourish, and we will be working closely together over the summer to make sure that the transition is smooth.

I would like to thank all of you for your support during the past year. Being involved with Ovacome has been an extremely enriching and formative experience for me. I shall, of course, remain very active within Ovacome and will look forward to returning at some point in the summer months to resume a more local role. Meanwhile I shall report to you in the newsletter from various places on our travels as we follow in the footsteps of many an intrepid traveller . . .

Alexandra Dargie

Letter from the Editor

It has been a busy three months. The AGM went very well and produced many interesting suggestions for the content and direction of the newsletter. Thank you all for your letters and contributions to this issue. I have printed some of the letters I received and would urge you all to continue to write to me in order that we may raise any other issues via the newsletter. We may go so far as to create a letters page if appropriate.

Other questions posed at the AGM included queries as to the profile of our membership. An article will follow in the next newsletter to give some figures as to the ages of members, their connection with ovarian cancer, and where they first heard of Ovacome. It has already become apparent that we have a surprisingly young membership, although this is not reflected in the national statistics on women with ovarian cancer. I would urge all of those members who have not yet filled in a Membership Details Form to complete the one that has been enclosed. It will help us to update the profile of our membership.

I cannot overemphasise how invaluable your contributions over the last quarter have been. I have received so many letters and some very welcome offers of articles for the newsletter. We will have a number of regular contributors in the future (amongst them Diane Chapman on Complementary Therapies and Karen Summerville in her capacity as a Specialist Gynaecological Cancer Nurse).

I hope you will also help us to continue to improve on the services that Ovacome is offering its membership by completing the questionnaire enclosed. Thank you for your continued support.

Kerry Ingleton,
Editor

For Sarah: The Ship

What is dying? I am standing on the sea-shore. A ship sails and spreads her white sails to the morning breeze and starts for the ocean. She is an object of beauty and I stand watching her till at last she fades on the horizon, and someone at my side says, "she is gone. . .",

"Gone where?" Gone from my sight, that is all; she is still just as large in the masts, hull and spars as she was when I first saw her, and just as able to bear her load of living freight to its destination. The diminution in her size and total loss of sight is in me, not in her; and just at the moment when someone at my side says "she is gone", there are others who are watching her coming, and other voices take up a glad shout "there she comes", and that is dying.

Anon

In remembrance of Sarah Dickinson, founder of Ovacome, who sadly died in April.

Diane - more complements!

Thank you to everyone who responded to my article in the last newsletter. I had numerous calls expressing interest, support and making suggestions for entries, all of which I have followed up. Book titles, addresses and therapies will all be included and I am now nearing the end of my task to provide members with a complementary therapies handbook. I firmly believe that, providing information on a complementary approach is available immediately diagnosis is made, women with ovarian cancer, who are determined to take responsibility for their own healing, can affect the outcome of their illness.

It would be foolish to claim that complementary therapies promise a cure but, at the very least, they can support traditional treatments of surgery and chemotherapy to extend remission and improve general health and quality of life.

Over the next few issues, I will be contributing a regular spot on complementary therapies, beginning with what it means to consider a complete change of diet and lifestyle. Later articles will include immune boosters and one or two of the more fringe and 'wacky' remedies which people have found successful.

For this issue let us begin with a simple suggestion that you throw away the coffee and black tea and start drinking green tea. An article in the Daily Telegraph on 8th June confirmed what the Chinese and Japanese have known for decades, that green tea is valuable in the fight against cancer. Research in America has found chemicals in green tea called cathechins. One of these, epigallocathechin-3 gallate (EGCG), is thought both to reduce tumour size and inhibit metastasis by limiting the cancer cells' production of urokinase. This is a key enzyme often produced in high levels by cancer cells.

Drinking green tea is one of many simple and easily implemented approaches to self-help. As well as adding variety to fluid intake of a healthy diet,it is light and refreshing and can be drunk hot or cold.

Pimentos in Lincoln, telephone (01522) 560008, do an excellent variety called 'Tea of Life', by mail order, at approximately £1.20 a quarter.

Diane
Lincs

Karen's Column

It is with immense pleasure and enthusiasm that I introduce myself. I am a Specialist Nurse, supporting women with gynaecological cancer, many living with ovarian cancer. I have a background in women's health screening and health promotion, and am interested in quality of life issues that affect women and their families with this disease.

Through my work and the phone calls I receive, it is clear that not all women with ovarian cancer have access to a specialist gynaecological cancer nurse. As there are still only seven of us employed in this role throughout England, Wales and Scotland, it is not surprising that the level of support and information varies throughout the country.

Last year, the Gynaecological Cancer Campaign set out standards of care agreed by the British Cancer Society for women with gynaecological cancers (see below). It suggests six questions women should ask about their care, the fifth being "Will I have access to a specialist nurse or counsellor?" However it remains question-able whether all women receiving this standard of care.

Through the Ovacome newsletter, I hope to cover many topics that women may find helpful in empowering them to manage the effects of their disease. These include body image, sexuality, fertility issues, the menopause, hormone replacement therapy and alternative therapies aimed at relieving symptoms. I would also welcome suggestions or ideas for other areas you would like me to address in the future.

Karen Summerville
Gynaecological Cancer Nurse Specialist, Royal Marsden Hospital

Editor's note: Please send suggestions to Debbie Howells by Email or write to the Ovacome address.

Greetings Cards

We desperately need designs for Christmas cards and greeting cards. After the resounding success of our Christmas cards last year, we are keen to produce more in time for advertising in the Autumn news-letter. So, please, get yourselves, your children and your grand-children drawing, painting and sticking. Send in designs on paper up to A4 size to Alexandra Dargie at the Ovacome address.

Sufferers?

At the AGM, someone took issue at the term "sufferers" to describe those with ovarian cancer. It was felt that it suggested that women effected by ovarian cancer "suffered" continually. We, as a committee, have discussed this term many times and would welcome suggestions as to a more appropriate name. Irene Merry of Kingston upon Thames sent me a letter proposing the title of "fighters" for those among our membership who have the disease. Any further ideas on this subject should be emailed to Debbie Howells or sent to her attention at the Ovacome address.

Can you help?

If you can help, please Email Sharon.

• Have you received treatment with topotecan (Hycamtin) or do you know anyone who has and would be willing to discuss this with someone about to begin a course?
• Have you had a course of hormone treatment (not HRT)?
• Do you know anything about the ADEPT trial due to begin in the Autumn at the Royal Free Hospital?

Sharon Eastwood
Fone Friends

Helping a worthwhile cause

Thank you to everyone at the Ovacome AGM who sponsored Janet Hume's "chemo-copy" head shave, which took place on 18th July at Moseley Primary School, Coventry. The amount raised by us was £85.

The event was in memory of her mother, Maureen Hume, who died last November. Maureen, a member of Ovacome, was a big believer in a macro-biotic diet. Diagnosed with stage 4 ovarian cancer in 1992, her family are convinced that diet was a major factor in maintaining her quality of life for so long.

All monies raised from Janet's efforts will be donated to ROC (Research into Ovarian Cancer) to support their research into a reliable screening test for Ovarian cancer. For Ovacome members, such a test is too late but we all want to protect future generations from the scourge of this disease.

Well done Janet for sacrificing your beautiful long blond hair for such a worthwhile cause.

Diane Chapman
Lincs

Tips

Mouthwash, as prescribed by my aromatherapist: 6 drops of Bergamot 6 drops of Geranium 6 drops of Tea Tree in 1000 mls of Spring or Filtered water Rinse mouth thoroughly and hold a while before spitting out. Do not use in seven days following chemotherapy.

Jean Ford
Cambs

HEADSCARVES CAN HELP YOU
Get knotted!

Here are some ideas on using headscarves effectively if you are losing your hair. Scarves need to be made of fine soft cotton which moulds and clings; try Monsoon, Anokhi, Oxfam, ethnic shops or even the local market stalls.

A fringe is useful - even a little hair goes a long way - so find a sympathetic hairdresser to trim it for you. And you could try experimenting with old wigs, or even, more expensively, consult a wig-maker.

Finally, remember that earrings look good with headscarves and can help to restore your feelings of femininity.

© Marion Hammant

Sent in by Jean Ford, Cambs

Fone Friends

Following the Spring Newsletter, I can confirm with pleasure that Northern Ireland now has its own Fone Friend co-ordinator and I hope to be able to confirm one for Scotland in the next issue.

We now have a Fone Friend Task Force and although we are yet to have our first formal meeting, I believe the additional support will be of great benefit to the network as a whole. The first a series of mini newsletters went out in the Spring to our co-ordinators. A regular update is planned and I hope to extend this to all our Fone Friend volunteers as well in the future. There are now around 70 of us nationwide and I feel it is important for us to keep our lines of communication open.

You will see I have altered the form of the contact list in this issue. This is a temporary measure whilst the areas undergo a few more changes. So for all newcomers to the network, please find the telephone numbers for you to call below:

Diane: 01472 879466
Sharon: 01825 790147
Chrissy: 01494 875895

Here's to a warm and sunny summer. With best wishes,

Sharon Eastwood

Are you in the north-east?

Margaret Borthwick and Heather Coyle discovered that they lived too close to just be Fone Friends and therefore met for coffee instead. Do you live in the North East? Would you like to meet up with them? If so, please phone Margaret on 0191-3884433.

Or the south-west?

Mollie lives in Taunton, so if there are any members in this area who would like a chat and some coffee they would be very welcome. Her telephone number is 01823 253034.

Mollie Eastwood, 2 Manor Park, Norton Fitzwarren, Taunton, Somerset TA2 6SG.

Book Reviews

Remarkable Recovery
Caryle Hirshberg and Marc Ian Barasch, published by Headline

This is, indeed, a remarkable book which catalogues the extra-ordinary healing of cancer patients who were diagnosed as terminal and whose life expectancy was only months or merely weeks. It is not about spontaneous remission, which can be simply swept to one side as an inexplicable event and therefore impossible for science to penetrate. Rather, Remarkable Recovery charts the progress of cancer as a disease which has the potential for cure. It examines the physical complexity of the body's healing system and the psycho-spiritual influences which are central to the healing of many patients for whom traditional medicine can be of no further help. It explores the possibility of a biological explanation, the combined effects of mind and body, the patient's attitude and the strength and support gained from personal relationships. It then comes down to the conclusion that a multifaceted healing programme has a synergistic effect on the healing system which profoundly affects the survival of patients who are determined to live and "colour outside the lines". It is an empowering and inspirational read for anyone with the will to explore ways of contributing to their own healing.

Diane Chapman
Grimsby

Cancer through the eyes of ten women
Eds. Patricia Duncker and Vicky Wilson. Pandora Press, 1996, £8.99

Cancer memoirs usually follow one of two paths: "triumph over tragedy" if the patient survives; "death with dignity" if she doesn't. As all of us who have experienced cancer know, it is far more complicated. In spite of the support and love many of us are lucky to have, we are still uniquely alone when we are told we have cancer and embark on treatment, knowing that our lives will never be the same again. Reading other people's cancer stories is one way of finding that we are not alone (joining Ovacome is another!) and that there are people who know exactly what it feels like. This book reflects my own emotions and struggle with information, decisions, fears. It is a painful book and I have chosen not to read some of the chapters. Most contributors had breast cancer, and only one had ovarian cancer (a brilliant chapter, in my view), but all express emotions that all of us will recognise, even if we do not feel exactly the same. The book also take an unflinching look at some of the less accept-able, or more frightening aspects of the experience - cancer as a kind of addiction; cancer leading to relationship breakdown; recurrence of disease after many disease-free years. These things do happen. None of it is easy; much is distressing; but it helps a great deal to know that other women have been there and got through. The book confirms what I have always thought; that each of us has to find our own way through the cancer experience. If we can help each other in any way, so much the better.

Claire Duchen,
London

Please help others benefit from articles or books you have read, by either sending details to the Ovacome address, for the attention of Debbie Howells or via Email, so we may review it, or by writing a review yourself.

For more book ideas

Poem

The Time to Start is Now

If you want to do a thing
Then do it right away.

Start it - don't procrastinate,
Proceed with it today

Say the kindly words you feel.
Do the timely deed.

Tomorrow may be too late
To fulfil somebody's need.

Make an effort of the will
And make a brand new start.

Mend old quarrels, cast aside
The fears that haunt the heart

Resolve to make life work for you,
Don't question when or how.

Just put the wheels in motion -
The time to start is now.

Kathleen Gillum

Sent in by Valerie Teague, East Sussex