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Introducing the Committee

Adrian Dickinson

adrian

As Sarah's husband, I have been connected with Ovacome from the beginning. Sarah was looking for information about this disease and wanted to talk to people in the same boat: when this was not possible we both set off on the search. Ovacome is the fruit of these labours. In the early days I limited myself to helping out at the periphery; producing the newsletter, making tea for some of the first committee meetings. This ensured that we had enough time left over for each other. Now Sarah has died, I am keen to continue and promote her legacy by acting as Secretary and being involved in the Raising Awareness task force.

Ruth Payne

I am 42, married with two teenage children living in East London. In July 1996 I had surgery for a large stage 1 ovarian cancer tumour followed by six months carbo-platin therapy. As a practice nurse I was horrified about how little I and my colleagues knew about ovarian cancer. Having surfaced from the tiredness of chemotherapy I am really keen to be involved in raising awareness of the disease in health professionals and the public.

I am aware that many of you have had a very long and frustrating time before ovarian cancer was diagnosed and if anyone feels able to write and let me know of their experiences, we may be able to highlight areas where there are particular problems.

The Second Annual General Meeting

The 2nd Annual General Meeting took place in the Burnt Stub Mansion at Chessington World of Adventures. Over 100 members were present to listen to Alex and the committee report back on a successful year for Ovacome. Details are in the annual report and if you have not received your copy then let Kerry know at the usual address. Sadly, this year was marred by Sarah's death in April but the committee expressed determination to build on the Fone Friends network, the growing membership of over 700 and the well-read Newsletter. Achieving this will be no mean feat and the committee has expanded to 12 members, joined by three co-opted members, to deal with the ever-growing membership and responsibility.

Additionally there will be some changes to how your committee operates. To ensure we can achieve Sarah's vision and provide the services you need, we have formed four task forces to be our four foundation stones:

Please write to any of the task force leaders at the Ovacome address if you would like to be involved in any of the activities.

Congratulations to Alex Dargie, who announced her intentions of taking a well-earned rest by travelling round the world after her upcoming wedding to Bernie. We wish her all the best on both voyages and expect to get regular letters from abroad. In the meantime, Caroline Elliott will step into her shoes and act as chairperson while Alex is away.

A lively question and answer session followed the formal reports. While space does not allow us to report everything, it is worth mentioning the general concern about the level of support and information provided to sufferers. While Ovacome can not give out medical advice, we will provide information about available treatments and put you in contact with people in the same situation.

Any feedback that you give us on how well we are doing is greatly appreciated. We look forward to seeing you at next year's AGM.

Adrian Dickinson,
Secretary

Cancer and the Citizens' Jury

A Citizens' Jury is a small group of people picked to represent the local population. They are given information about a particular issue, hear evidence from witnesses and cross-examine them. The jurors then discuss the issue and reach a decision. The organisation sponsoring the Jury must then take the recommend-ations seriously and, if they are not carried out, must explain why. Over the last 20 years, Citizens' Juries have been used to look at a wide variety of issues.

Because Citizens' Juries are a new and interesting way of gaining public views, East Sussex, Brighton and Hove Health Authority applied to the King's Fund (an independent healthcare charity) for a grant to fund a pilot project. This will be examined carefully, along with others around the country, and a report will be produced to evaluate how useful Citizens' Juries are as a method of involving the general public in health authority decision-making - something which particularly interests us all.

Jurors are selected from the general population by a number of methods. In this case, the Jury was picked at random by an independent organisation from the electoral register and telephone book and by door-to-door canvassing. The Jury must have at least 12 members, so 16 are recruited in case anyone is unable to continue for the full jury - fortunately this is rarely the case. The question which the Jury was asked to consider on this occasion was "Where should women with gynaecological cancer who live in East Sussex, Brighton and Hove be offered treatment?" and a number of us who were sufferers were asked to be witnesses. Several of us were asked to give a resumé of our experiences, first with our GPs, then at the hospital, the treatment, the follow-up care, the travelling to treatments and finally we were asked what we wanted from the service. This was quite a harrowing experience for one woman as she had received particularly rough and insensitive treatment from both her GP and the hospital doctors.

After the whole Jury had listened to the various experiences of the women who were suffering with gynaecological cancers, we broke up into small groups so that members of the Jury could ask some in-depth, and if necessary personal, questions.

This particular Citizens' Jury spent four days listening to a range of professionals and our group of witnesses, and was unanimous that the Health Authority should centralise cancer services in the county. Final recommendations visualised a centre of excellence for cancer provision alongside a teaching hospital. The jurors were concerned about evidence of fragmentation of the current service, the lack of data, and evidence that some doctors were ignoring best practice guidelines. The following improvements were recommended:


This was an interesting exercise in which to take part and I am sure the problems being experienced in this part of the world are duplicated all over the country. It is up to us to speak out when and where we can if we are dissatisfied with the way in which we have been treated while suffering this particularly distressing disease. However, at the end of the day it all comes down to money and to what the system can afford, but we can all do our bit to help improve things for ourselves and for others who will sadly come after us.

Valerie Teague
East Sussex

A kinder alternative

Between 1.5 and 4 million British women take some form of oestrogen supplement. The oestrogen is obtained from pregnant horse's urine and there is some concern over the treatment of these mares. They may be tethered in tiny stalls for six months of the year, unable to walk or even to lie down. Water intake, although regular, may be restricted in order that their urine produced is more concentrated. Premarin and Prempak-C are the only hormone replacement drugs derived from horse urine. Alternatives to Premarin and Prempak-C abound. These non-urine drugs are available in the form of tablets, implants and transdermal patches.

Please contact Hillside Animal Sanctuary, Hall Lane, Frettenham, Norwich, Norfolk, NR12 7LT (01603 891227) for a list of alternative products.

Newsletter: Looking to the future

Having requested comments on the direction of the newsletter, I received several letters, mostly expressing the opinion that its content was well balanced and informative. However, there were some dissenting voices; there are those women who feel that we must strive to ensure that the newsletter is always very positive and upbeat, and there are others who feel that we must be informative, even if the subjects tackled are painful. I personally feel that achieving the correct balance in the newsletter will always be difficult as women are coming to us at different stages of their illness - some have just been diagnosed and may be feeling very frightened, and others have come to terms with ovarian cancer and want practical help with dealing with the disease. Please continue to let me know what you think on this subject, and write to me with any suggestions you may have for new articles. In the meantime, here are some excerpts from letters I have already received.

Perhaps in future issues we could have a letters page where some of the wonderful letters I receive might be printed. When you do write to me, please state whether if you would be happy to have your letter (or part of your letter) printed. Of course there will be many who prefer to write in confidence, and I will continue to look forward to receiving those letters also.

Kerry Ingleton
Editor

"I just thought you'd like to know how much more positive I found this issue than the last. Last time I opened up and read and cried and cried. This time, being eight and a half months pregnant, the latter sat on the side for a week before I peeked inside. This time I thought 'hey, this is really happening, things are moving - this is a good thing!'."

Nina Susini, Kent

"I found the personal features very interesting as the treatments differ and it raises questions for me to discuss with my oncologist. Naturally I would prefer to read mostly positive stories as it's so encouraging to know that some of your readers have survived several years . . . however, I am a realist and all your contributions had a cheerful tone..." Brenda Davison, Surrey "I have read every issue of the Ovacome newsletter with interest, although there is an underlying pessimism (realism?) that I do find depressing."

Claire Duchen, London

"I have never found the tone of the newsletter to be anything other than positive and realistic. A diagnosis of cancer is completely shattering. Suddenly you see life being swept away in a most cruel and premature way, and you are apparently powerless against this relentless treachery. But knowledge brings power to its owner.

In the original article that Sarah wrote for Good Housekeeping she said of the doctors at the Royal Marsden "they have always respected my intelligence, making sure that I had sufficient knowledge to make informed decisions about my treatment".

I am sure that one of Sarah's aims in setting up Ovacome must have been to redress the imbalance between the disempowerment that comes with a diagnosis of cancer and the empowering nature of the knowledge that those who are already experiencing a new life have to share. She herself was always cheerful but practical and realistic. I'm sure she probably cried at the dreadfulness as much as she laughed, but by setting up Ovacome, she gave the rest of us the opportunity for empowerment and we should continue to welcome views and experience of all kinds as I know she did.

I think that it is important for our newsletter to encourage a wide spectrum of voices, views and experience. Of course some of the information will be very upsetting; sometimes the shared knowledge will be cheering, sometimes it won't be, but that's what it's like to have cancer. I'm convinced that being positive does not mean being relentlessly cheerful, or ignoring the harsh realities of treatment, or denying the possible fatal outcome of the disease. For me it means being aware of all eventualities, being well-informed and involved in my own treatment and, I hope ultimately, in the management of my own death.

The bottom line is that I want to know as much as possible about my future, the good, the bad, the dreadful, so that I can be prepared to make the most of what life I have. I am aware that there are people who would prefer to be like ostriches with their heads in the sand. Perhaps they cannot always cope with some of the harsh realities of our situation. Maybe the answer would be to have a pull-out supplement in the centre of the newsletter. It could be called something like 'The Bleak Bit', then it could be read or ignored according to the individual's inclination.

One of the stated aims of Ovacome is to "share personal experiences" and I believe that as long as each issue looks at our situation from as many different points of view as possible and includes a wealth of experience, as well as continuing to provide hints and tips on living with cancer and keeping us up to date with the latest available treatments, then we will be fulfilling that aim properly."

Sue Hadley, Northants

...Curls Tomorrow


When I wrote 'Hair today . . .' for the December newsletter, I was about to lose my hair and feeling very emotional. In fact, I wrote it with tears streaming down my face. Yet, by the time I had finished it, I had found some acceptance of the fact that my hair was about to fall out. Writing it all down had helped to get the pain out of my system, and I ended the piece on a note of hope that when my hair grew back I might have the hairstyle of my dreams.

By the time my hair did fall out I was not emotional at all - all I felt was more of a physical sickness at the handfuls that fell out in so short a time. It started two weeks after my first dose of Taxol and in four days I was completely bald, apart from a few tenacious strands which I cut off to even things up.

My wig, a perfect fit thanks to the wonderful "wig lady" who visits our clinic, was platinum grey and very pretty. I had the striking colour and "natural" waves I had always wanted. My family thought it an amazing improvement on my natural hair (I had to admit they were right!), and most people did not realise it was a wig.

I wore it from late September to early April. The first couple of weeks left me feeling as though I were wearing an elaborate hat, but it quickly became an extension of myself and I could put it on without the aid of a mirror. It never fell off or blew off, not even when walking the dog on very windy days.

Now, five months after finishing my treatment, I have curls! My hair has grown back as thick as ever but much less coarse than it used to be. True to form, it is still behaving in its own maverick way! At first it grew in soft white down and I was thrilled with it. However, as the thicker growth came through, it darkened - so I'm still a bit piebald but generally much greyer than I used to be.

The style, however, is very trendy and it is waving and curling with abandon - albeit in several directions at once! As a hairdresser friend told me: "People actually pay me to cut their hair like that!".

So if you are on the verge of losing your hair - keep smiling! It will grow again, the emotion does fade, and meanwhile experiment with hats, scarves and turbans as well as your wig. Just keep massaging your scalp with Silvikrin Organic Tonic, wear your wig with confidence, and look forward to a new colour, texture and style when your hair grows back again. You may even have curls too!

Sandra Jones
Sutton Coldfield

Standards of Care

These standards, agreed by The British Gynaecological Cancer Society, list six key questions every woman should ask about her cancer treatment. "Will I have . . ."

 


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