Regular features

Letter from the Chair

As this is my first letter as Chair, I wanted to say how much I’m looking forward to being involved in Ovacome’s growth in the years to come, and to extend my thanks and admiration to those who have been working so hard all year to make Ovacome’s services the best they can be.

Since the last issue, we held our first "Midlands" AGM at Alton Towers. We all had a chance to catch up with friends old and new and, in some cases, attach faces to the Fone Friends we’ve spoken with dozens of times already.

Adopt a hospital
Louise Bayne took the opportunity of a captive audience to launch her Adopt a Hospital programme for the Raising Awareness Task Force.

By now, our members have committed to making sure over 50 hospitals are aware of Ovacome and its services, and that hospital staff know about Ovacome so they can refer women to us.

Our patron Jenny Agutter, along with Ovacome members, did their own bit for raising awareness by launching our new video and fact sheets to the media with resounding success. For those of you who may be interested in receiving any fact sheets, or want to offer them to your local hospital, call Alex at the Ovacome office to see exactly what’s available.

Fone Friends
The Fone Friends network continues to get better and better. Karyn Connor has been working tirelessly to rally her team, creating a rota that ensures that people who need to talk to someone can get easy and helpful access to one of our members. Plans are also under way to hold a training session that we hope will give the members of the Fone Friends network the support they need to help others.

Advisory Board
We’ve also taken a major step forward by creating an Advisory Board that will help us review and write the important information about ovarian cancer that we know so many of you want.

Diane Chapman, with her seemingly endless energy and inspiration, has shown us the way forward for that Board, by helping identify excellent healthcare professionals from traditional and complementary treatment approaches. This multi-disciplinary Board will hopefully reflect Ovacome’s desire to offer a wide range of information that members say they find useful. It also allows us to ensure that the information is as accurate and up-to-date as possible.

As a first step in this effort, you’ll see some comments we’ve received from a medical oncologist about last issue’s With Complements column. The insights from Dr Richard Osborne in Dorset offer yet another perspective to the issue of how best to approach your treatment regimen.

Welcome new sponsors
Finally, we sadly bid goodbye to our corporate sponsors, SmithKline Beecham Oncology, which recently folded its UK business operations in the oncology field. SB supported many Ovacome activities over the last three years including the newsletter, the production of our new video and the set of accompanying fact sheets.

Bristol-Myers Squibb have graciously committed to working with us for the foreseeable future and we are looking forward to developing our new ties with them. Happily, Dee Drinkwater, who has done an incredible job designing and printing the newsletter each quarter, will still be working with us to make things happen.

So, a very, very busy Summer indeed for Ovacome. With a hectic Autumn still ahead. Where everyone gets the time and energy, I just don’t know! But what a difference it makes to so many.
Madeline Gold

Letter from the Editor

Welcome to the Autumn edition of the newsletter.

It has been a busy quarter for me personally, David (my husband) and I are going to be moving to Southampton shortly and have been searching Hampshire for a new house. Not an easy job as there are some fantastic properties around the area, but hopefully we will be moved and settled soon.

I am extremely grateful to all of you who have continued to send me articles for the newsletter. As I said at the AGM, this is what the newsletters should consist of (along with more readers tips and the continuing medical articles), as these help to inspire our readers. If anybody is interested in undertaking a book review for me please contact me on 01992 446306 for more details.

Please carry on sending in your letters so that I can continue to produce an informative and useful newsletter.

Just a reminder about the dinner being held on 7 November 1998 at the Conrad International Hotel, Chelsea Harbour, London. Tables are still available: if you are interested please contact Helen Ellis on 01276 27511. This is an Ovacome fund-raising event organised by Helen as a tribute to her mother who sadly died earlier this year from ovarian cancer.

Finally, there has been some good news in the press recently regarding the improved cancer survival rates.
Debbie Howells

Raising awareness update

The raising awareness team has had a busy few months spreading the word. Our target this year is to ensure that all women diagnosed with ovarian cancer are told about Ovacome and how to contact us. We aim to do this in several ways and we need lots of help to make it happen.

Adopt a hospital
We want as many Ovacome members as possible to "adopt" their hospital. This means they become the nominated Ovacome contact for their hospital, and with the raising awareness folders provided ensure that the places where ovarian cancer patients are treated have posters, membership details and newsletters. We suggest that members visit their departments every three months to ensure that posters are still visible, newsletters are delivered and stock of Ovacome literature is replenished. The role can be developed further to include talking to ward staff or even doing presentations. Nerve racking –yes, worthwhile – definitely, but optional nonetheless. We started the scheme at the AGM, and had a wonderful response: so far we have adopted nearly 50 hospitals. There are many more out there so if you feel this is the job for you, please write to Alex at the Ovacome office, telling us which hospitals you would be able to adopt. (We only need to cover hospitals treating women with ovarian cancer.) If the hospital has not already been adopted. we will send you a raising awareness folder, with all the goodies you need to get you going.

Exhibition stands
As the word spreads we are being invited to exhibit at many medical and nursing study days. These are an ideal forum for raising Ovacome’s profile. There are many other health-related exhibitions where we could have a presence, but we need volunteers to set them up and man them. If you feel you could help with this, please contact Alex in the office, saying how far you would be prepared to travel, and we will contact you if any exhibitions come up. If you hear of any events you feel Ovacome should attend please let us know.

I know many of you feel strongly about raising the profile of ovarian cancer and Ovacome. I hope you will be able to help with the adopt a hospital scheme, and the exhibitions. If you would like to become involved in the raising awareness task force, or have any comments or suggestions to put to the group I would love to hear from you.
Louise Bayne
Task Force Leader

From our postbag

My Christmas Story
In December 1997 I went in to hospital for my third laparoscopy. I had suffered with endometriosis for a number of years and every month was becoming a living nightmare. After investigation, my gynaecologist informed me that there were "chocolate cysts" around the ovaries, but I was reassured that everything was OK.

On 16 December 1997 I went back for my results assuming all would be well. Little did I know that my whole world was about to fall apart through the Christmas rush, trees and lights. I was told I had ovarian cancer. On 22 December I had both ovaries removed. My first thought was that I was not going to be able to have my own biological children. Ovarian cancer at 32, surely this was not possible?

Now, six months on, I have completed my chemotherapy and survived it. I live one day at a time and am so grateful for the wonderful things that I have in my life, my partner Leo, my mother, family and friends.

I try to remain positive and happy and constantly remind myself to "keep the faith". Soon I hope to have IVF treatment and hopefully my star will be born.
Lisa Beardow
London

Horsham Support Group
Some people think a cancer support group a sad place to visit. If so, they should visit the Horsham Support Group where their fears will soon be dispelled. Although only in a church hall it has a warm and loving atmosphere created by a regular nucleus of caring members. The Group is open to anyone with cancer and their carers or friends.

The meeting consists of everyone’s own introduction with as much or as little information as one wants to give. Relaxation and visualisation follow, with a healing session by regular healers which enables one to build up a relationship, with a personal chat if desired. Then tea and biscuits and a general natter.

There is a library of books and tapes which you can borrow, and leaflets on many subjects connected with cancer. There is always someone who has been where you are and who can offer advice, support and suggestions or just listen. I find it often helps just to talk to someone who knows how you feel. Then, of course, there is the laughter – you need to pay a visit to believe that!
Liz Fullick
Day Patient, Worthing, Sussex

Sharing my story
I have just received my second copy of Ovacome’s newsletter and found it a very interesting read. It also helps me to feel that I am not alone with my problems.

In January 1997 I started to bleed heavily and was referred to the gynae clinic at the local hospital. I had a scan and a hysteroscopy and was diagnosed with fibroids. Following both procedures I was informed that they could only see one ovary! I was offered a place on the waiting list for a hysterectomy. The bleeding did not stop and the small golfball-sized lump in my womb grew to the size of a melon at an alarming rate. The doctors were well aware that during the previous April I had a partial mastectomy on my left breast (and that I had had my right breast removed 18 years earlier) and that I was taking tamoxifen. I myself feel that this should have rung some alarm bells, but despite this my operation was scheduled for the end of July. After my second emergency admission to hospital my husband decided enough was enough and insisted that they bring the operation forward. I then had my hysterectomy at the end of May. Immediately after this my GP and I were assured that all was well, but three days later the doctors at the hospital called me into his office and told me that I was in fact suffering from three types of cancer (high grade endometrial stromal sarcoma, cancer of the uterus and carcinoma of the ovary). According to the report the first two are described in relation to tamoxifen therapy.

I still feel very angry that I had to wait for so long for the operation, given the symptoms and the circumstances. The cancer has now spread to my lungs and I am currently undergoing chemotherapy again. I later learned from the genetic clinic that, because of my breast cancers, my risk of ovarian cancer was very high and even I know that in some cases tamoxifen can cause cancer.
Kate Brend
Oxford

Book Review

Getting Well Again
By Carl and Stephanie Simonton

Getting Well Again was among the first books I read following my own diagnosis of ovarian cancer in December 1996. Conditioned during my lifetime to swallowing the medicine as prescribed by doctors, I had never considered how I might participate in my own recovery from illness. Such was the impact of this book on me, that I did not hesitate to select it as a suitable title for a book review.

The authors are practitioners at the Cancer Counselling and Research Centre at Fort Worth in Texas. Their book describes a self-help programme of psychological and practical techniques, based on the approach used at Fort Worth, which aims to show cancer patients how they can participate in getting well again and live a rewarding and fulfilling life.

They believe that emotional and mental states play a significant role, both in susceptibility to, and recovery from, cancer. Cancer is described as a problem of the whole person, not just an illness of the body. It follows that effective treatment must focus on the total human and not the disease alone. Emphasis is placed on participation in getting well again, i.e. what you, the patient, can do, in conjunction with orthodox medical treatment, to regain your health.

Part 1, The Mind and Cancer, explains the theories on which the physiological approach to cancer treatment is based. Patients are encouraged to develop positive expectations and a belief that the disease can be influenced. A fascinating chapter explores the links between an individual’s reaction to stress, suppression of the immune system, and subsequent susceptibility to illness, especially cancer.

Pathways to Health then describes a programme of self-help techniques designed to reinforce orthodox medical treatment and foster the image of such treatment as an ally and friend. Techniques such as relaxation and visualisation are important elements of the programme and detailed instructions are included. Much is made of the mental imagery process. During a period of relaxation, patients are encouraged to mentally picture or visualise the desired outcome. A number of case studies illustrate the power of effective mental imagery. The programme asks patients to set personal goals to help focus their reasons for living and establish priorities. Specific suggestions are included to ensure that a balance of physical, intellectual and emotional needs are addressed.

The final chapter describes how to build an important support system. Several coping strategies are featured, including a suggestion that the patient be rewarded for health, rather than illness.

Empowered by this knowledge, patients who have participated in their own recovery often emerge from the experience of confronting life-threatening illness with a sense of control over life which was not apparent before illness.

An inspirational read and a valuable handbook to accompany patients and supporters through the cancer journey.
Linda
Guildford

With complements – Diane

Thanks to all who telephoned or wrote or after my last article. I continue in the best of health and thoroughly enjoyed the summer, indulging in my favourite hobby, gardening. I harvested a bumper crop of potatoes, beans are growing profusely, and borders and tubs are a riot of colour.

I find gardening therapeutic, but tend to get carried away with the physical tasks. But my stone Buddha sits reflectively behind my water feature, the seat along-side reminding me constantly of the need for quiet contemplation to give body, mind and spirit a chance to be still and regenerate.

However we spend our time, it is all too easy to get caught up in a physically demanding daily round with too little time to regard, as sacred, a little time for ourselves. Yet, this is so important. When we overtax the body physically, we are doing our immune system no favours and a quiet, focused mind is better able to nurture a positive spirit and a will to live.

Relaxation
Serious illness strains body, mind and spirit and we often have to re-learn to relax to achieve a good night’s sleep, live fully in the present and rediscover a sense of the future. There are excellent self-help relaxation tapes but we don’t need to go to unnecessary expense. Deep breathing is the simplest and easiest way to bring about a sense of calm and relaxation.

So, find a quiet spot indoors or in the garden and make yourself comfortable. Breathe through the nose, inhaling evenly and deeply slowly filling the lungs and abdomen. Exhale fully before breathing in again. Breathing in through alternate nostrils for four breaths, and on the fifth through both nostrils, helps focus the mind, oxygenate the blood and balance energy. Eastern cultures place great store by correct breathing for good health, inner peace and well-being and it is worth investigating Chinese and Indian techniques for yourself.

Relaxation can be achieved sitting or lying, remembering to breathe deeply and evenly, focusing on parts of the body, tensing and letting go until each part feels warm and heavy. Begin with the toes on one side and work up the foot, leg and thigh. Move on to the fingers, hands, wrist, lower arm, elbow and upper arm. Repeat on the other side. Next, tighten the buttocks and let go, moving up the back to the shoulders tightening and letting go. Screw up the face tightly and then relax the muscles completely. Finally, feel the whole body let go, feeling warm and heavy, sinking into the chair or floor. If you find consciously relaxing unfamiliar, try specially prepared tapes which take you through the process; soft music usually accompanies the voice and supports relaxation. But beware! You are likely to fall asleep before you reach the end.

Meditation
This deeper form of relaxation is worth pursuing. It stills the mind, putting you in touch with your higher self. Meditation teachers Eddie and Debbie Shapiro say: "When we practise sitting or walking meditation, allowing the mind to become quiet, receptive and still, we go beyond the chatter that fills our days and creates chaos and fear in our minds. When you meditate you connect with the essence of life, find the self beyond the ego. Here you can develop an inner awareness of the mind as it really is, beneath the superficiality."

Meditation is practised in many cultures, especially Eastern religions and philosophies. Whatever the route, the purpose is a deep meditative state which moves the body from everyday beta-rhythms to longer alpha rhythms, when the body can most readily recuperate. The easiest approach is to sit with your back well supported and eyes closed, and concentrate on a single word, image, sound or candle flame – what Eastern religions call a mantra. Move into deep relaxation as you empty the mind of the material and reach a peaceful and spiritual state in which the ego loses its grip on consciousness. If thoughts nibble away at your stillness, let them drift away leaving you unaware of your physical body and in a state of deep peace, tranquillity and free-floating absolute calm. This can be very hard to achieve but with patience and practice we can learn how to meditate. Begin with 10 minutes three times a day and gradually extend to 20 minutes, then half an hour. A useful book for beginners is How to Meditate by Lawrence LeShan.

Dr. Ainslie Meares, a well-known Australian psychiatrist who worked with cancer patients, recommended three hours of meditation daily. I'm not sure I have achieved such dedication but I’m working on it. For the moment, a quiet interlude with my Buddha and the silver sound of water falling over pebbles will do very nicely. Stay cool!

To learn more about the Gerson diet contact: The Gerson Support Group, Lesley Pearce, 1 Park Rise Close, Leatherhead, Surrey KT22 7JA, tel: 01372 386049, or Dr. Charles Innes, The Health Partnership, Kensington, London, tel: 0171 589 6414. I also have information, tel: 01472 752455.

Comments from the Medical Community

Following last issue’s With Complements column, Ovacome received a letter from Dr Richard Osborne, a medical oncologist at Poole Cancer Centre in Dorset. Dr Osborne has been involved with Ovacome on a number of projects, including our video, Ovarian Cancer: What to Expect. His letter concerned the incorporation of special diets and hyperthermic and intraperitoneal chemo-therapy into the treatment ovarian cancer. In the interests of Ovacome's open forum policy, which welcomes comments from all members, we've summarised the points made by Dr Osborne.

He writes: "Last issue‘s With Complements article will inevitably cause other women in a similar situation to ask:

• Can the Gerson diet (or other diets) have any effect on my cancer?
• Should I be receiving hyperthermia and intraperitoneal chemotherapy?
• Why has my doctor not discussed these options with me?"

About Diets
Dr Osborne writes: "Although a low fat, high fibre, vitamin-adequate diet is known to reduce the risk of developing some cancers, there is no scientific evidence that any diet can cause cancer to go away, or can keep it away after remission has been achieved with surgery, radiotherapy or chemotherapy.

The best medical advice, therefore, would be to follow a ‘normal, healthy diet’ such as the one recently published by COMA (Committee on Medical Aspects of Food and Nutrition Policy. Their cancer-prevention regimen, Nutritional Aspects of the Development of Cancer, recommends a diet rich in cereals, fruits and vegetables, an increase in dietary fibre, and a reduction of intake of red and processed meats (Editor‘s Note: you can obtain a summary of the report through Alex at the Ovacome office).

The Latest on IP Hyperthermia
Dr Osborne writes: "There is good evidence from test-tube and animal experiments that cancer cells are more susceptible at temperatures higher than normal body heat. There are also encouraging results from studies of intraperitoneal (IP) chemotherapy in ovarian cancer. But, given that these two methods, when combined, can be cumbersome and potentially painful, we as doctors must ask whether thia approach really offers our patients any benefits over conventional therapy.

"To date the majority of studies in ovarian cancer have simply defined the feasibility and toxicity of IP hyperthermic chemotherapy with platinum drugs, and at present there is no evidence that simple, well tolerated drugs such as carboplatin should be displaced by more aggressive approaches such as IP hyperthermic chemotherapy.

"Having said that, oncologists remain optimistic about IP therapy. At present, even when a high-quality remission is achieved, recurrence can occur due to residual microscopic seedlings which have evaded the effects of the conventional intravenous anti-cancer drugs. IP treatment is already considered potentially useful as ‘consolidation‘ in these situations, in an attempt to knock out remaining disease and thereby increase the cure rate. Randomised controlled trials of IP antibody-targeted radiotherapy as consolidation are in progress in the UK, and many oncologists feel that the best treatment for their patients is to offer them access to these trials. The results of one such trial were reported at this year‘s key international oncology meeting in Orlando, Florida. The study offered promising results from IP hyperthermic chemotherapy consolidation in a small number of women in remission after first-line ovarian cancer treatment. However, despite these results, it must be stressed that these outcomes required further confirmation from other randomised studies before this new treatment can be confidently be adopted as a true advance."

Ovacome understands that the treatment decisions you make are as individual as you are. And for Diane Chapman, following a careful diet and pursuing an array of complementary and experimental treatments have made a tremendous difference in the way in which she’s faced her journey and in the kind of inspirational support she’s been able to offer to so many members.

Do you have any comments you’d like to share regarding your experiences with special diets and/or IP? Send your letters to the Editor at the usual Ovacome address.

Poem

Hope in Coping with Cancer

Of course there is life after cancer, it’s not the end of the road,
There is so much support around us helping to carry the load,
So many do recover, and live to tell their tale,
Figures prove it’s a minority of these who unfortunately fail,
It’s believing in recovery that will overcome our fears,
It's futile feeling sorry by allowing floods of tears,
Be strong and fight your illness, enjoy each precious day;
I too have suffered cancer and want to help you in some way,
By telling how I coped with what you are going through,
I’m enjoying my life to the full and pray that you also will do.

Thelma Garlick
West Yorkshire