Regular features
Letter from the Chair
Those of you who attended the AGM in the summer will remember Alex handing over her responsibilities to me to act as caretaker Chair whilst she and Bernie took time out to go on their travels. However, I am happy to tell you that Alex has decided to cut short her trip and will be back with us in March next year. The temporary restructure prompted us to take a long look at how we manage the charity and it soon became obvious that after 14 months we felt that our growing membership deserved dedicated time paid for by Ovacome.
We have developed a new role of Chief Administrator who will work to provide service to our members and to ensure that Ovacome is being managed and operated effectively and in accordance with our aims and objectives. The really good news is that Alex has decided to accept this position in March when she returns, and has therefore officially resigned from the committee to enable her to be employed by Ovacome on a permanent basis. There were sighs of joy and relief all around.
Another major personal change next year follows the decision by Kerry Ingleton to relinquish her responsibilities as membership secretary and newsletter editor. Although we will all be very sad to see Kerry go, we appreciate she will have her work cut out for her following the birth of her second baby in April. Kerry's involvement with Ovacome has been invaluable due to her expert organisational skills and commitment. She has been a key player supporting the ongoing growth and success of Ovacome and she will be a hard act to follow. Kerry will be replaced as editor by another member of our committee for future issues.
Finally, the remaining members of the committee have been working hard in the task forces concentrating on improving the Fone Friends network; finding new ways to raise awareness and funds; investigating ways of using publications and corporate sponsorship to develop Ovacome in the wider community. We will be meeting in December to see how our efforts can be intermingled to allow us to make some carefully researched decisions to move Ovacome forward, and in doing so, to continue to grow and support our membership. I'm sure you'll agree that 1997 has been an amazing year for Ovacome and it looks as though 1998 will follow suit.
I wish you all a comfortable and Happy Christmas and look forward to the New Year and a new direction for Ovacome. With Best Wishes,
Caroline Elliott
Letter from the Editor
Firstly, a big thank you to all the contributors to this issue and to all those people who wrote to let us know what they thought of the last issue. It has been very encouraging to receive such appreciative feedback.
It is a miracle that this issue ever made it into print as I seem to have lost my marbles slightly in the last month. I am midway through my second pregnancy and realised that I was getting increasingly scatty when I wheeled someone else's baby out of a shop this week . . .
On that note, I am sorry to say that I will be resigning and handing the reins over to a new editor in the New Year. I have very much enjoyed my work with Ovacome, both in pulling the newsletter together, and as Membership Secretary, corresponding with existing and new members. I have been a part of Ovacome since we were a group of women sitting around Sarah Dickinson's dining room table and I have seen it grow beyond anything I had ever anticipated. We should all be proud of ourselves, committee and membership alike, for it is all our contributions that have helped to create an organisation that is now 1000 members strong. We have now gone a long way to achieving the aims laid out on the front of the newsletter.
All the best to the rest of the Ovacome committee for the coming year, I am sure they will do a great job in taking the charity and its newsletter forward.
Many thanks for your support and have a wonderful Christmas and New Year.
Kerry Ingleton
From our postbag
Ovacome fundraising day
We had a tea party on 13th September and it was a great success. My friends were a great help, bringing cakes, sandwiches - I did make some of my own! - and gifts for the raffle. The weather was lovely and we basked in the garden. It all became so jolly and everyone enjoyed themselves so much they said we must do it again sometime - I said, it can be arranged! I did give my friends a small read-out about ovarian cancer and Ovacome. Please find enclosed a grand total of £110.
Shirley Michael
Berkshire
False alarm
I've just had a good CT scan. I requested it since over the last few months I had been having increased abdominal discomfort and pain. I really thought it was the end of my second remission and that I was on the slippery slope again. It turned out to be pain caused by a bunged up colon - constipation in spite of going to the loo two or more times each day. The oncologist suggested brief use of laxatives and more fibre and water. I had been feeling very bleak mentally and am now much more cheerful.
Sue Hadley
Northants
Congratulations!
The last two editions of the Ovacome newsletter have been superb. The whole operation seems to be going from strength to strength. I must admit I found some of the previous newsletters a little bit sad . . .For some reason I have never been moved to cry for myself, but I cannot read anything about another's experience of chemotherapy or sad cancer experience without being totally overwhelmed by tears. But behold! We have a new, sharper, more uplifting informative newsletter.
The Medical Update article by Ian Jacobs is marvellous. I know very little about ovarian cancer and what actually happened to me. To be able to find a quiet moment to read and digest information like this is most helpful - I think we are all most afraid of what we are ignorant of or unfamiliar with. Please thank him.
Response to your Benefits Information page in Summer 1997 newsletter must have completely inundated you. I cannot thank you enough. I am now in receipt of Disability Living Allowance. I had no idea whatsoever that I had such an entitlement. I repeat, I cannot thank you enough.
Pamela Roud
Kent
Valerie Teague
Ovacome wish to convey their sincere condolences to Norman Teague and his family at the sad news of Valerie's death in November.
Until recently Valerie was an active and valuable Ovacome committee member and she will be sadly missed by all her friends and colleagues within Ovacome.
Ovacome in the News
September and October were busy months for Ovacome. As part of our first anniversary, a special dedication was made to Sarah Dickinson at the Royal Marsden Hospital where Sarah was treated. The opening of the Ovacome Ovarian Cancer Resource Centre by Jenny Agutter and Adrian Dickinson was covered in most of the local London newspapers, including:
- Kensington & Chelsea Mail
- Westminster & City Mail
- Westminster and Pimlico News
- City of London Post
- Sutton Borough Guardian
- Marylebone Mercury
- Paddington Mercury
These newspapers have a total circulation of 75,300.
Ovacome committee members have been busy spreading the word and promoting awareness both of ovarian cancer and Ovacome. Karyn Connor was interviewed and photographed for a lengthy article in the Evening Standard in September (circulation 420,000). Another committee member, Marjorie Halewood, was featured in a Best magazine reader profile 'Coping with Ovarian Cancer' on 28th October (circulation 544,700).
Debbie Howells and her husband David (Tottenham Hotspurs) were busy raising funds and awareness for Ovacome and appeared in their local newspaper. Debbie also gave a BBC television interview for a segment relating to the connection between talcum powder and ovarian cancer. Women's Realm also covered Debbie's story in their December issue (available 26th November).
Finally, Ovacome has been approached by CNN and Meridian Television for a segment they are developing on ovarian cancer.
The magician mesmerises the children with sleight of hand and fantastic balloon creations.
Fone Friends Co-ordinator Sharon Eastwood takes a break from her phone duties to help celebrate Ovacome's first anniversary
Members and their families and friends join in the festivities at the Blackheath Concert Halls
Ovacome's publicity over the year was displayed for guests to see just how much media coverage the organisation received in one short year
Patron Jenny Agutter dances the evening away to the beat of the live band
More Complements - Diane
It was very encouraging to hear the government announce that a diet to protect us from cancer should be low in animal protein and high in whole, unprocessed foods, with an emphasis on fresh fruit and vegetables. This followed on the heels of the report of the World Cancer Research Fund called Food, Nutrition and the Prevention of Cancer: A Global Perspective. WCRF is the only cancer charity to focus exclusively on cancer prevention through diet. It issues a regular newsletter and offers a range of free booklets and leaflets giving practical and thoroughly researched information on how to lower cancer risk through diet.
It may seem a bit like shutting the stable door after the horse has bolted, but many of us who have taken a fresh look at our diet after diagnosis have found that the right food improves general health and well-being and, I dare suggest, helps maintain remission.
Nutritional Supplements
Another important aspect of nutrition for anyone with cancer is the subject of supplements. Whilst swallowing handfuls of pills is no substitute for the largely vegetarian, wholefood diet which I wrote about in our autumn newsletter, many professional healthcare practitioners recommend a range of vitamin and mineral supplements to support the healing process.
Cancer places great demands on the body and treatments leach the system of essential nutrients which are not easily replaced by food alone. Add to this the need to make good the loss of tissue following surgery, the problems of long-term absorption of pollutants from our food and the air we breathe, and the debilitating effect of stress, then there is clear indication of the need to supplement. This will help both to rid the body of damaging toxins and to rebuild the immune system.
The Bristol Cancer Help Centre, where I spent a very inspiring week following my initial surgery and chemotherapy, holds a vast database of studies which represents a solid body of evidence that vitamin and mineral supplements are beneficial for the cancer patient.
What Should I Take?
The core recommendations by most authorities are the anti-oxidants, A/betacarotene, C, E and selenium, although it is now established that people with hormone-related cancers, such as breast and ovarian, should not supplement with vitamin E. All supplements should be 'foodstate' rather than synthetic. Foodstate supplements have the advantage of being more efficiently assimilated. Anti-oxidants prevent chemical reactions caused by toxins which can create a chain of damage in our cells, triggering the development of cancerous activity.
Vitamin A/Betacarotene
Vitamin A and its precursor, betacarotene, stimulate the production of T-lymphocytes and help break down the protective shield of cancer cells. Because vitamin A is fat-soluble, it is theoretically possible to overdose on this vitamin, so it is best to take betacarotene. The body can store this with no ill-effects and turn it into vitamin A to meet its requirements. In the active stages of cancer some healthcare professionals recommend that a sufficiently high dose of betacarotene should be taken for the palms of the hands to turn slightly yellow - up to 36 mg a day. When maximum absorption has been reached, reduce this to 18 mg daily, taken as four 4.5 mg 'foodstate' tablets.
Vitamin C
There is a good deal of evidence to suggest that vitamin C destroys cancer cells and can improve our oxygen supply, which is good news as cancer does not like a high-oxygen environment. Ovarian cancer patients have been found to be deficient in vitamin C, and stress also leaches this vitamin from the body. Some doctors also believe vitamin C can encourage production of interferon. This protein, created by white cells, inhibits the reproduction of cancer cells.
Recommended dosage varies but since excess is rapidly excreted, we need not worry about overdosing. Pauling and Cameron are perhaps the best known exponents of the value of vitamin C supplementation and have recommended that as much as 20-25 grams could be taken daily, particularly in the active stages of disease. However, lesser amounts are thought to be adequate to maintain high levels in the body. As a maintenance dose, 1 gram taken with food in 250 mg 'foodstate' tablets, at regular intervals throughout the day, is considered adequate by most healthcare professionals.
Vitamin E
As a cautionary measure, this supplement should not be taken by anyone with a hormone-related cancer, i.e. ovarian or breast. It is worth mentioning also that a recent study in Ireland questioned the value of vitamin E.
B Complex
The B vitamins help in the formation of white blood cells and lymphocytes and thus support the immune system. Vitamins B6 and B12 are of particular importance. Two of the little-mentioned B vitamins - B15 and B17 - are also important. B15 (panganic acid) protects against oxygen deficiency and B17 (nitrilosides) is claimed to destroy cancer cells. A 50 mg 'foodstate' B complex tablet provides a good general supple-ment, although it is worthwhile researching further the role and availability of the individual B vitamins as anti-cancer agents.
Selenium
We ought to be able to absorb enough of this trace element from our food but in reality modern farming methods have destroyed it in our soil and it is, therefore, an important supplement in the fight against cancer. It is essential for activating enzymes necessary for a healthy immune system. It also protects against radiotherapy and chemotherapy, particularly the kidneys against cisplatin.
Two 200 microgram 'foodstate' tablets each day are recommended.
Zinc with Copper
These elements act together and also in conjunction with vitamin C: 15 mg of elemental zinc combined with 1 mg of elemental copper taken daily as a 'foodstate' tablet is the usual recommendation. Zinc is necessary for prostaglandin production. German studies suggest that small doses of copper taken in conjunction with zinc can decrease tumour activity.
CoEnzyme Q10
The body naturally produces co-enzyme Q10. It is an essential part of our cells' production of energy and without it the system would grind to a halt. Levels of co-enzyme Q10 diminish as we grow older and when we are under stress of illness. As well as being an excellent energy booster, studies have shown that supplementing with co-enzyme Q10 can double phagocyte activity, can accelerate two-fold the removal of toxins from the blood and it also protects the heart muscle from the effects of chemotherapy. There is some uncertainty about the optimum daily dose but there is general agreement of the beneficial effect of between 90 and 120 mg.
Other minerals
Other 'foodstate' supplements which are often recommended are magnesium, calcium, bromelain, potassium and iodine, all of which help to address imbalances in the cancer patient.
Potassium, in particular, appears in a number of cancer therapies. Ideally, we should have a ratio of 20% sodium to 80% potassium in the body. The cancer patient is usually found to have an imbalance in favour of sodium, so as well as removing salt from the diet, a potassium supplement is worth considering.
Bromelain, an enzyme already mentioned, is not a supplement readily recognised but it is worth seeking out as it is said to help break down the fibrin coating of cancer cells, making them more open to immune attack.
Getting help and advice
Until recently, nutritional supplements were available on prescription if your GP was sympathetic and knowledgeable. Sadly, the government has decided to remove this privilege. So, brownie points to the politicians for their backing of a healthy diet but a resounding raspberry for this present short-sightedness over prescriptions. So, rather than choose from the confusing array of pills available in the healthfood shops, you would be well advised to consult a nutritionist or holistic doctor.
A good 'foodstate' range of supplements is available from, Nature's Own, based in Worcestershire, telephone 01684 310022 or contact the Bristol Cancer Help Centre for advice on 0117 980 9505. Also, if you are interested in learning more about the World Cancer Research Fund, telephone 0171 343 4200.
Again, bon appetit and stay healthy.
Diane Chapman
Lincs.
Apologies from the Editor
Karen's Column
Karen Summerville has not been able to write an article for this issue due to work and personal pressures. She will, however, be back with an article on the issues surrounding infertility in the Spring.
Correction
In the article regarding financial benefits, Sandra Jones mentioned the usefulness of getting a letter in support of your claim, if you have to go to a tribunal on appeal, from your local counsellor. This should have read councillor (i.e. elected representative on town, county or parish council). Apologies for the confusion.
Fone Friends
On the Move
These last weeks of stresses and strains culminated in my house move which took place at the end of October. I am now in the process of settling into sunny Somerset rather than sunny Sussex! My new telephone number is 01278 662917.
Reminder
In early October all Fone Friends should have received a letter from me advising my new address and telephone number. Enclosed with this was information on what being a Fone Friend entails and a tear-off slip to be returned if individuals no longer wished to be included in the Fone Friends listings. If you did not receive your copy, please let me know. If you need to return this slip but have not yet replied I would be very grateful if you could forward this to me as soon as possible so that our records can be updated.
Men Again!
We are still on the look-out for volunteer Fone Friends of the male gender. If you think you could provide telephone support and regular contact with men whose partners, relatives or friends have ovarian cancer or men who have lost someone to the disease, I would be very pleased to hear from you. Write to me (address on the back of the newsletter), marking the envelope "Sharon Eastwood, Fone Friends" and include a telephone number on which you can be contacted.
Janet and Louise
Another mention for Janet Ahler who lives in Holland and would like contact with Ovacome members in the UK. Her telephone number is 00 31 23 564 3282.
Thank you to Louise Bayne for volunteering to take Area 9.
Wishing you all a very happy Christmas.
Sharon Eastwood
Book Review
You Can Heal Your Life
Louise L. Hay, Eden Grove Editions
Having studied Diane's long list of recommended books at the end of 'With Complements', I decided to select the above to read and review. I have long been a reader of holistic health books and knew that Louise Hay's philosophy was respected and admired throughout the world and had inspired and transformed the lives of millions of people. You Can Heal Your Life was not written specifically to help cancer patients and their families but is aimed at anyone who wants greater acceptance, love and fulfillment in their life. The book has been a renowned success throughout the world and, as the author herself overcame terminal cancer through her own philosophy, I expected an inspiring read.
The book begins with Louise Hay's philosophy on life and on this very first page I begin wrestling with some of her beliefs. For example, she says that 'we create every so-called illness' in our body and that 'releasing resentment will dissolve even cancer'. Although I believe that we are, to a certain extent, responsible for our life experiences, I do believe that much of what happens to us is not of our creating or within our control. From my father's experience of cancer, I suspect that most patients do enough soul-searching and work through powerful emotions of guilt and self-blame without needing to read that they are responsible for their own illnesses, let alone that simply 'releasing resentment' will cure cancer. I am not sure that this helps patients who may already be feeling extremely vulnerable. It seemed a rather simplistic philosophy but, determined not to be too sceptical on the first page, I continued reading with an open mind and hoped to find more depth to substantiate her philosophy.
The book discusses the areas of ourselves and our life that we need to work on to heal ourselves. Each chapter begins with a relevant affirmation which, it is recommended, the reader says or even sings aloud several times each day. Although I found these affirmations interesting, I felt that they were not that dissimilar to the daily thoughts we each have that reaffirm the choices we have made in our lives. However, there was something empowering in actually repeating the affirmations, although making up one's own or repeating a particular quote that you find helpful works in a similar way. There are exercises through the book that the reader takes time to work through and, although they are very simple, in practice they were sometimes extremely difficult, particularly those that involve staring at your image in the mirror and repeating positive feelings. The affirmations and exercises really need to be done in conjunction with one another in order to maximise benefits.
We learn of the importance of looking deep into ourselves and our childhood to find the reasons for our dis-ease, the need to relinquish the past and forgive all that has gone before, and the need to recognise all the patterns that we create in our lives and our choice to change these patterns in order to create a healthy life. The book encourages us to adopt a new outlook on life and practice our daily affirmations to reinforce our new approach. We learn of the importance of our attitude to relationships, work, money and our bodies in helping us to make the transition to a new healthier life. At the end of the book we are presented with a comprehensive list of diseases and the attitudes that cause them along with affirmations to cure them. Although I found this quite fascinating, I was not convinced of its absolute authority.
Whilst the first reading left me somewhat bemused at some of the suggestions in the book, on a second reading following the exercises carefully I can see that it could have value to a reader who believed fully in its principles and their own power over their life. It certainly helps to share your thoughts on the philosophy of the book with someone else who has read it, as it helps to clarify one's own understanding of the author's beliefs. I often feel that the value of books such as this is the sharing of its ideas, as it can be very easy to take everything that is written as a universal truth.
However, many of its ideas are valuable and I am sure most readers take something positive from it. For me, I did not find the depth I wanted and found the philosophy too simplistic and often rather idealistic. I feel that the reader of such a book would need to be feeling emotionally very strong to take some of what is advocated and to be dedicated in working thoroughly through the book and in continuing with its philosophy in order to gain all that it claims is possible. As with many similar books, the theory may be inspiring and leave the reader on an emotional high, but the reality of life makes it extremely hard to obtain, and maintain, such an ideal.
Alexandra Dargie
