Regular features

Letter from the Chair

This Letter is my last, as I'll be moving on to new life experiences on foreign shores. I have been involved with Ovacome almost since the beginning in 1996, and remember the first meetings held at Sarah Dickinson's home, when we looked at ways in which to bring the cause of ovarian cancer to the forefront, and to fill a gap in much-needed support for the ovarian cancer community.

Three years later Ovacome has tallied an impressive list of achievements: a database of 3000-plus people who receive our newsletter, a growing library of printed information and videos, a vibrant telephone network that enables the ovarian cancer community to share their personal ovarian cancer journeys, the development of a multi-disciplinary Advisory Board, and ongoing support from Jenny Agutter, our patron. All this on a shoestring budget, and virtually volunteer staff.

Over the years, the cycle of life and our membership has been reflected in Ovacome's dedicated volunteer Committee. We have married, relocated, given birth, seen our children graduate from university, and watched those close to us lose their battles to ovarian cancer while others continue to fight bravely on. As individuals we endure, and as a support organisation Ovacome continues to evolve with the challenges those cycles represent.

I believe that Ovacome has come a long way in such a very short time. And I know that, as the millennium approaches, the charity's mission will be well served by those who continue on the Committee, and by those who will be joining it. As part of the group's commitment to growth, Debbie Howells, who has been the voice behind the Ovacome phone and the editor of the newsletter, will expand her role as our second part-time staff member. Debbie will continue her current duties while making a concerted effort to raise public awareness and the funds needed for Ovacome to serve the community. Alex Whates, back from her recent maternity leave, will provide additional administrative support, and will focus on keeping up with the ever-growing volume of mail that we receive. Our hope is that, between Debbie and Alex, we can better meet the growing demands the charity uncovered, and provide expanded services over the next year and beyond.

Some time ago, a member of the Ovacome Committee asked me why, as I was not a sufferer, I chose to become involved with Ovacome, and to stay involved. I said then, as I say now, that Sarah Dickinson uncovered a dire need for people to know more about this disease, and to have a place and people to turn to when they or a loved one were diagnosed. I felt then that I could use my professional skills to help make a difference to the community and hope to continue my efforts back in the States. I have met very courageous and committed people in my own journey with the group, who I feel grateful to call friends.

I wish the group, Committee and members happiness in their lives, and sincerely hope that Ovacome continues to make a difference in the lives of those who need its support. Thank you for allowing me to be a part of such a tremendous journey.
Madeleine Gold

Letter from the Editor

Summer has arrived, or has it! As I sit typing this letter to you it is blowing a gale and pouring with rain outside. Where has the sun gone? Still, welcome to the Summer issue. I hope you approve of the new, larger format. Please let me know if you have any comments on how we can continue to improve our main form of communication.

It has been a very busy quarter in the Ovacome office, which is incidentally home-based (I get the impression that a lot of our members thought that the office was based in Bart's). Our post is delivered to Bart's Hospital and then redirected to Alex's home address and distributed accordingly. The membership is still growing at a fast rate, a good sign that our raising awareness efforts and Ovacome Day are paying dividends. 8th April was a very successful day and to date we have received cheques totalling £4,500. Some of the events held are mentioned in the newsletter. Our members are amazing and inspirational women: even when they have been undergoing treatment they have organised events and spent time speaking to the press - thank you all very much. We could not function without your assistance. So far I have received £850 raised from the sale of ribbons. If you have money outstanding from the sale of ribbons can you please let me know whether you are still selling them or whether you intend to save them to sell next year, thanks.

Congratulations and many thanks to all of our Marathon runners - please turn to page 4 for more information. If you are interested in running for Ovacome in the 2000 London Marathon please contact me via the Ovacome office.

I now have a new supply of collection boxes, posters (A3 and A4), ribbons and balloons to offer to our members to help our cause. If you feel you can take a poster to your GP surgery or hospital or could sell some ribbons, please contact me via the Ovacome office and I can send you whatever you need.

I am looking for people to review books for the newsletter. Have you read an interesting book that could help others? If so please contact me or write up your review and send it to me at the Ovacome address shown on the back cover.

I hope you enjoy the Summer and the sunshine, when it decides to show itself. Please keep on sending in your experiences and tips for inclusion in the newsletter and please let me know if there is anything specific that you would like to be included in a future issue.
Debbie Howells

An apology from the Committee

The Committee of Ovacome would like to apologise to members who have contacted the Ovacome office to complain about the Background Information section of the Special Edition Newsletter. We would just like to explain our reasons for including this information. We are often asked for information to pass on to the media to help to promote Ovacome and to raise awareness of ovarian cancer. We felt that this statement should include the statistics of the disease, as it helps to get the strong message across that ovarian cancer and its treatments need more publicity and help from the health authorities, GPs and Government. We all know that ovarian cancer is known as the silent killer and we are all very keen to be involved in changing this in the future.

We cannot apologise enough for the distress that was caused to some of our members, and would like to state that this fact has been taken on board and we now appreciate that it is not appropriate to send this sort of information out to everybody. For Ovacome Day next year we will offer a separate press statement. It is always a difficult subject to broach but we do take our members' comments seriously and would like to reassure you that this will not happen again.

Fone Friends

New Area for Ireland
You may have read Martina Graham's article in our last edition. Martina is doing a wonderful job of raising the profile of ovarian cancer in Ireland and is very keen to support Ovacome. She has now joined FoneFriends as Area Co-ordinator for Southern Ireland.

If any ladies from Southern Ireland are interested in being a FoneFriend or need to talk to someone with ovarian cancer, Martina is waiting to hear from you. Just dial the Ovacome number to speak to a FrontLine FoneFriend, who can pass your details on to Martina.

New Area Coordinator Needed
Area 1 - Lancashire and Cumbria
If you would like to help Ovacome, please consider coordinating the above area for FoneFriends. It involves a little admin and telephone time, linking women with ovarian cancer together. Please contact Karyn Connor via the Ovacome office. I would like to thank Mary Bailey for looking after this area since Ovacome began in 1996.

Thank you
My thanks to the FrontLine FoneFriends and Area Co-ordinators for their continued dedication, who have been quite busy in the last few months.
Karyn Connor

Call us today 07071 781 861
If you would like to speak to someone who has had ovarian cancer - GO AHEAD and ring
Many women find it such a relief to talk to someone else who has gone through what they are facing

If you are worried about the cost of the call, don't be: all Front Line Fone Friends, Area Co-ordinators and the Administrator will ring you back if asked.

From Our Postbag

Can yew help us?
As most of us probably know by now, the drug Taxol can be very effective against ovarian cancer. It is manufactured from yew and there are, I believe other drugs coming along from the same source.

Yew Clippings Limited will pay for yew hedge clippings, so perhaps members of Ovacome could encourage gardening friends, local churches or villages where clipped yews grow to contact them on 01308 485693. They will send free bags to hold the clippings and arrange for their collection, as well as paying for them. The minimum quantity they are able to collect is a 2.5-kg sack, and payment is according to the quantity collected.

Travel well
You asked in your Winter 98/99 newsletter for comments about Travelcare Insurance. I am happy to report that this has proved to be a wonderful company for my partner Valerie who had the misfortune to have ovarian cancer in March 1998. As frequent travellers prior to her illness, we found it difficult (Worldcover Direct) if not impossible (BUPA) to obtain cover. However, as indicated in your magazine, Travelcare were exemplary. No additional premium, full cover and amazingly competitive rates for the trips we planned to France and Italy. Whilst (as is often the case with central phone operations) there was a difficulty in phoning, we left our name and number, and were always called back within the hour as promised.

Many thanks for bringing this company to our attention and I am sure our findings will be repeated by others who have had this difficulty.
Mr RA Riley
Bournemouth

Editor's Note: a member has brought another reliable travel insurance company to my attention. They are Perry Gamble & Co Limited, Broadway House, 112-135 The Broadway, London SW19 1RL, telephone 0181 542 1122. The member has insured herself to travel to Italy in July for £52 (with £250 excess). They will insure you if you are undergoing treatment but not unfortunately if you are terminally ill.

Green Tea
I stumbled on your website whilst trying to find a site for St Bartholomew's Hospital. Being male, I have a different interest in green tea. I first heard of it when its anti-androgenic properties were confirmed by the Karolinska Institute in Stockholm (last month). I don't buy it by post, though. Our local Co-operative store has "Clipper" brand teas - one of which is Green China Tea Bags. Single estate tea, 100% green china tea leaves, weight: 2 oz - price a whopping 99p for 25 tea bags! Beware those who use it too often. Stools may change colour, becoming lighter. Also, if you make it too strong, its taste can be quite bitter.
Ed Attewell

Do you work for Barclays Bank?

Can you help us? Barclays Bank operate a pound for pound scheme which enables any member of staff undertaking a fundraising event to ask Barclays to match their total amount raised. This is a scheme that can only be applied for by bank employees and if this includes you and you are intending on participating in an event please call the Charity Co-ordinator at Head Office on telephone number 0171 699 5000.

With Complements - Diane

First, let me apologise to everyone who has tried to contact me during the past three months and has failed to get a response. Normally, I am available for a chat and aim to reply promptly to my answerphone messages. Unfortunately, my health suffered a setback at the end of February and I have had to take time out to concentrate full time on my own healing and well being. Now, however, I am glad to report that, thanks to some excellent care and treatment, I am back on target and enjoying time in my garden, digging and planting for the summer.

Release
For a while back there, the future looked bleak and initially I was frustrated with thoughts of "what might/should have been", "if only", missed opportunities, and a comedy of incidents which had seemingly conspired against me when I appeared to be doing so well: you know the stuff. But such thoughts, in the long run, serve no useful purpose and, once I had worked through and voiced my very real concerns to all the relevant people, it was time to move on, for healing can only take place in a spirit of cooperation, optimism and with positive feelings.

You can gather from the above that I believe the most important thing is to release the past and start afresh. To some extent, this question of release is a problem we all share. To use a gardening metaphor, it is no use trying to cultivate beautiful healthy plants in a weed-ridden patch. So we need to clear away rubbish and plant afresh for a hopeful future.

Channelled healing
There are, of course, other important areas of healing and all who have participated in any form of spiritual, faith or prayerful healing will vouch for its power to bring about a state of inner peace and tranquillity. When a third party is involved, many people report feeling an exchange of energy from the healer's hands and relief from pain and discomfort along with a letting go of tension.

Jack Angelo, a nationally recognised healer, said: "When healing became the responsibility of physicians, the patient's personal responsibility for his own well-being was effectively transferred. Spiritual healing helps a patient to see the truth about himself and his condition. It goes beyond the symptoms to treat and heal the cause of the physical, mental, emotional or spiritual problem. In doing so, the patient is given back control over his own health and his own destiny."

Perhaps herein lies its special strength. When we actively seek out inner healing, in whatever guise, it is an empowering experience. It is as if we give the body permission to receive the channelled energy, unconditional care, love and compassion which allows us to return to a natural state of equilibrium. Results are rarely instantaneous and do not require a religious affiliation. However, whatever name we give the life force that has created us, it is there to be channelled for our good by prayer or by gifted individuals, providing we truly open ourselves to receive it.

Religion and one's spiritual life are very personal matters but most of us can find a non-denominational healing centre or sanctuary within easy travelling distance of home. It is also possible to receive healing privately and the Church of England offers a healing ministry in many parishes. We must not be led to expect miracles, although these do happen, but a genuine attunement and lifting of the spirit can be achieved and, for this reason alone, regular healing sessions are well worth seeking out.

And, remember, don't ever give up!
Live fully in the present and believe in the future.
Diane Chapman

Book Review

No Time to Die
By Liz Tilberis Weidenfeld and Nicholson. £18.99.

Liz Tilberis was the New York-based British editor of . Diagnosed with ovarian cancer in 1993, she bravely fought the disease until she died a few weeks ago and was probably the person with the highest public profile raising awareness of our "Cinderella cancer". The book tells two stories: her life in high fashion and her battle with illness. Tilberis was passionate about fashion all her life. She studied fashion and went to work for British Vogue, eventually becoming its editor, until taking the Harper's Bazaar job in the early 1990s and moving to New York. The story of her childhood, youth, family and career is easy to read, although peppered with names from the fashion world, and repeated references to Calvin, Donna, Gianni et al. become a little tedious for readers who don't care about fashion as she does. She was also friendly with the Princess of Wales and this friendship is duly sentimentalised. In spite of this, a pleasant, lively, enthusiastic and determined personality emerges.

More interesting is the tale of her cancer. She went through the horribly familiar stages of treatment and rollercoaster of emotions; she heard the dreaded words "it's back" and found a way of adjusting her life to her situation, dealing with cancer as a chronic condition. Her bouts of chemotherapy made me wonder about differences in management between the UK and the USA, and inequality of access to the best care. Not everyone can tap into the resources Tilberis has at her disposal. While cancer is no respector of fame and wealth, money and connections undoubtedly give you a head start in getting the best care.

Tilberis was convinced - although in the absence of firm evidence - that fertility treatment twenty years previously caused her cancer. This is not a connection that we hear much about in the UK. She provides clear information about the disease and its status among cancers and quotes one doctor who argues (against the majority) in favour of general screening, explaining the lack of funding for ovarian cancer by saying "people who get breast cancer live to lobby and people with ovarian cancer don't" (p252). Very sobering.

Tilberis describes her status in terms of the ad for a Timex watch ("takes a licking and keeps on ticking"). Her CA125 rises, she has chemo; it falls and she carries on with her hectic life. It happens again and she does it again. She has had her tumour tissue tested against 70 or 80 types of drug and knows which ones will be effective against it (why can't we all have this done?).

Liz recently lost the battle with her illness, and this book is testament to her inspirational courage.
Claire Duchen

Editor's Note: Meg Ryan is set to star in a television movie as Liz Tilberis. The Hollywood star has bought the rights to No Time to Die, the above-mentioned book. Liz Tilberis said "I want it to go on TV and reach as many women as possible. I want them to know about ovarian cancer and how to prevent it, instead of learning the hard way - too late - as I did. If Meg Ryan played me it would be perfect."

I am sure you will all agree that if this plan comes to fruition it will go a long way in helping with the raising awareness of the disease.

Linda and Roy Cecil's Diary of Linda's battle with ovarian cancer

Linda was diagnosed with Stage 3 ovarian cancer in August 1997. Roy and Linda decided to keep a diary of events, taking them through testing, diagnosis, surgery and chemotherapy. I personally have read their story and found it a very inspirational and encouraging read and would highly recommend you obtaining a copy. Linda is a very positive person and this comes across strongly through the book. I have met Linda and Roy on two previous occasions: once at the production of the video and again when we asked to help launch the patient information pack back in October of last year. They are a much-devoted couple and have used their own personal experience to offer hope to other sufferers.

Linda and Roy are paying for the publication of the book themselves and copies will be available as from 1 August for just £5 (plus postage and packing) of which £2.50 will be donated to Ovacome. If you would like to purchase a copy please telephone me on 07071 781861 or send an Email to place your order.