Articles

Membership Survey Results

A two-page questionnaire was sent to each member earlier this summer. Its goal was to find out what services members are currently using, how satisfied they are with these, and to help the Committee and task forces identify issues and activities that members would like us to pursue in future. Many thanks to all who returned your questionnaires. Your input is so valuable to everything we do.

Responses
Approximately 17% have replied to date, and questionnaires are still coming in at the time of writing. Of those who responded, 70% have ovarian cancer, 20% are partners or family members, and 10% are healthcare professionals.

Newsletter and publications
Members were overwhelmingly complimentary about the newsletter, and find it 'extremely useful'. You like to read about others' experiences. It is also a reminder that you are not alone, a great source of comfort for you. Healthcare professionals also told us that they find the newsletter 'positive and practical', easy to read and informative, and good for patients. They said it was the only publication they know of that dealt specifically with the ovarian cancer community.

Besides stories from other members, you like information on clinical trials and NHS issues, self-help and coping tips. In future, you said you would like more on everyday tips, clinical research, medical and surgical treatments (including complementary medicine) and psychological support. Other suggestions for the future included financial benefits, an expanded 'letters' page, reading lists, and more on diet and nutrition.

As far as other publications Ovacome might develop for the ovarian cancer community, general information on ovarian cancer and specific medical issues were those you cited as most important, followed closely by information on ovarian cancer centres and specialists around the country. Partners and spouses would like to have information on how better to cope.

Members said the best way to deliver this information was as printed material - perhaps when diagnosed or via GP surgeries or libraries. Healthcare professionals and partners said information videos and teaching packages would also be useful.

The majority of members with ovarian cancer do not have access to the Internet, but spouses, family members and healthcare professional do.

Raising awareness
The majority said that the general public and NHS should be made aware of ovarian cancer and treatment options first, and Ovacome and funding issues next. Members should be made aware of treatment options first, clinical research trials second, and NHS funding issues and Ovacome events next. Most suggested that greater awareness of ovarian cancer symptoms and diagnosis was needed across all audiences, as well as the kind of screening available, especially for those in high-risk families.

Members thought NHS staff need to be made more aware of patient concerns such as treating patients with respect and seriousness, referring cases without delay, addressing the physical and psychological issues patients face such as sudden onset of the menopause, and becoming more aware of unorthodox treatments and alternative medicine.

Fone Friends Network
Approximately one-third of members with ovarian cancer had used the Fone Friends network and the majority (83%) found it very or somewhat useful. Many found it was good to share experiences, saying that people you spoke with were informative and inspirational to you. Partners and family members are also making use of the service and had found it generally to be useful.

For those who had not used the network yet, it was because you had recently been diagnosed and were not ready to talk about what you were feeling, or did not have anyone in your area who was part of the network, or because you preferred to meet with people rather than use the phone. Others were already part of a support group at their local hospital. However, you were all glad that the service was available and many of you said that you were planning to use it in the future.

Fundraising
Ideas for future fundraising activities abounded and are too numerous to list! Some of the most frequently mentioned suggestions include: coffee mornings, sponsored walks, fun runs and swimathons, and selling ovarian cancer badges in high street shops. Many of you said that these fundraising events should be regional, including activities for the North.
Madeleine Gold

The value of counselling

Shock disbelief, anger, fear, uncertainty, sadness, depression - these feelings overwhelmed me when I was diagnosed with ovarian cancer six months ago. I know they are common reactions, but everyone reacts differently depending on personality and personal circumstances. In some ways, I found powerful emotions more difficult to handle than the physical effects of cancer and treatment. My normal life was blown apart, and my relationship with my children completely disrupted. I could no longer work at a brilliant job. How was I to get through this? Anyone who has been there will recognise the scenario.

I found talking to other women through the Ovacome Fone Friends invaluable. My family and friends are incredibly supportive, but I needed more. This was difficult for me to acknowledge, as a trained counsellor. In my work I was used to giving the support and guidance, not to being the needy one! Yet another thing that cancer had changed for me!

I decided to take advantage of short-term counselling from BACUP. This was free and I felt I needed a counsellor who specialised in cancer patients and their families. Has it helped? Why talk to a stranger? Is it not better in times of crisis to rely on family and friends?

Talking to someone outside my immediate circle was an advantage. Family and friends tended to tell me that I "would be all right", and in a way that is what I wanted to hear. The problem was that I was still left with all the anxiety, fear and panic, and I would repeat the same conversation again and again, going round in circles. With my counsellor I could explore these feelings as much as I wanted and, though it didn't make them disappear altogether, it certainly made them less frightening.

Because of her professional training and not being personally involved with me, I did not have to worry about saying anything upsetting or distressing to my counsellor, as she could handle it. This gave me a feeling of being "held" and somehow helped all those overwhelming emotions to become more manageable.

At the centre of my experience are the fear and anxiety that I might die from this illness, and the terrible sadness that I might not see my children grow up. Death is the great taboo in our society - some of the controversy around this newsletter recently is about how it should be discussed or whether for some people it should be mentioned at all. My counsellor gave me the opportunity to explore these painful emotions. The pain is still there for me but I don't feel so drained of energy, as I am now more aware of how hard I was working to try and hold these strong feelings in and at the same time push them away. This was making them more powerful and ever present.

Friends have sometimes asked: "How can you bear to have counselling at such a time - surely it will open up all sorts of other painful issues to do with your family relationships?" It was having cancer that did this for me - in a way I found difficult to handle. A leaflet given to me at the counselling centre describes having cancer as opening the door to a cupboard where you keep the things you don't know what to do with. Everything comes tumbling out, you can't stuff it back in and perhaps the only way is to sort it out: put some things back and let go of others. My counsellor did not give me any directions or advice but listened to enable me to work out my priorities for myself.

I find I am now much clearer about what I want to do in my life, although living with the uncertainty is incredibly difficult. People say "We all live with uncertainty - we may be hit by a bus tomorrow." This is true, but most of us learn to push these fears to the back of our mind to carry on living. Having cancer pushes these fears dramatically into our consciousness, and I have experienced this as a tremendous loss of confidence in the future. I now view the whole cancer experience as akin to a bereavement process that I need a lot of support to get through. (I don't mean that one necessarily will die from it, but that the emotions are similar.)

Finally, talking it through with my counsellor made me realise how dreadfully the whole business of my diagnosis was handled. I was begging for information, but, with the best of intentions, doctors were trying to protect me and spare my feelings. This was more frightening for me, not less. After surgery, my emotional wounds were as awful as my physical ones. Counselling has contributed to healing these, which, in some ways for me, is what the whole experience is about. It still makes me very angry, as do many of the issues to do with this awful disease, but that's another story!
Rachel Solemani

I am interested in how other women were first told of their cancer diagnosis, with a view to writing a further article. Please write to me at 38 Uplands Road, Crouch End, London N8 9NL

Headlines helps to keep your hair on

At the time of my first course of chemotherapy I asked if there was any way of retaining my hair and was told no.

Some months later I saw an article on an Israeli invention which claimed to prevent hair loss due to chemotherapy. I kept the cutting carefully.

When a second course of chemotherapy was necessary some eighteen months later, the thought of losing my hair again almost prevented me having treatment.

My long-suffering oncologist acquired a 'cold cap system', which did save most of my hair and, with the help of an Alice band with hair attached from an old wig, I managed to look relatively normal.

At this time we had started to investigate the Israeli system and Headlines was launched with an initial appeal to raise money for scalp cooling machines and to promote awareness of the system.

The press and media were wonderful. Thanks to coverage in the national press, an English manufacturer from Huddersfield came forward. He had invented a prototype cooling system which had been operational for eighteen months in the Huddersfield Royal Infirmary.

The Paxman Cooler is now undergoing clinical trials in Huddersfield and Manchester and is proving to be quite effective. The principal is fairly simple. The Paxman Cooler consists of a refrigerated base unit which supplies monitored cold air at specific temperature, through a tube into a specially made pull-on cap. There are several benefits of this system - very little nursing time is required, the system can be used continuously, with more accurate scalp cooling and lastly it is more comfortable to wear.

Headlines was launched to raise money to buy these machines which cost in the region of £4,000. As they are classed as a non-medical item the health service cannot fund them but consultants agree that if patients look better, they will feel better.

I must stress however, that scalp cooling is not suitable for all types of chemotherapy and indeed for all types of cancer. But certainly with the general chemotherapy used in ovarian cancer it should save many patients the problems of complete hair loss.

For further information about Headlines, please contact Caroline F Woolfson on 0161 448 7228.

Financial Benefits Mark Two

My article on benefits in our last edition provoked much comment on the way in which patients are informed about the benefits available to them (or are not informed at all). While many know about Statutory Sick Pay (and the subsequent Incapacity Benefit), the greatest problem appears to be with the lack of information about the existence of the Disability Living Allowance and Attendance Allowance.

Some ladies were seen by a social worker in the hospital at the time of their surgery; some were informed at chemotherapy clinic; some, like myself, found out quite by accident when in conversation with other patients; some, I suspect, never find out at all.

The other issue is the lack of consistency with which claims are handled. Some ladies have been refused DLA but told they can appeal; others have been to they have no right to appeal; some have been told they need a further medical in spite of having the medical section of their application completed by a doctor; one member was told she could reapply in the year 2000, in spite of having had a diagnosis of ovarian cancer made in 1994.

This haphazard access to information and variation in the handling of claims has prompted some of us to write to the Secretary of State for Social Security, Harriet Harman, to request greater consistency.

In the meantime I have compiled some hints on how to make your applications and what to do if you are refused benefit. I am grateful to the ladies of my local support group and to the wider Ovacome membership for their help in this.

When Applying
Application forms may seem intimidating but you can get help in completing them: ask the social worker at the hospital where you are receiving treatment to help you, or your support or MacMillan nurse. Some Citizens Advice Bureaux will help and, of course your local Benefits Agency or Social Security Office should be able to help. Don't struggle through the complexities of the form on your own.

When it comes to the medical part of your application, then try to get your oncology or radiotherapy specialist to certify your diagnosis and sign the form. They appear to carry more 'clout' than GPs (goodness knows why).

If Your Application is Turned Down
EVERYONE is entitled to the right of appeal to the DSS providing they do so in writing and within three months of being refused benefit. If you are refused again you have the right to request a tribunal hearing. This must also be requested in writing.

When you attend a tribunal it is advisable to take an advocate with you, preferably someone with knowledge and under-standing of your illness. Also take all documents and records relating to your claim. It is also advisable to keep a record of the date when you apply, when you appeal etc. Letters supporting your claim from your GP and your local counsellor would also be useful.

Keep copies of all your letters to the DSS and those that they send you. If you make contact with them by telephone, always ask to whom you are speaking, keep a note of the name, what they say and the date and time of the call.

If you feel you have been badly treated then ask for your claim to be back-dated to when you were first diagnosed. Hopefully you will not need all this advice; sadly too many ladies have had to fight the system to claim a benefit to which they are entitled.
Sandra Jones
Sutton Coldfield

Book review

The Good News About Cancer

Richards and Hourigan

Following a recent recommend-ation by Hazel Courteney, the health journalist, in the Sunday Times, I bought this book. Like many other people, I am sure, I was attracted by its title which alone is sufficiently enticing to keep one turning the pages.

It does not disappoint and offers hope to anyone with the courage and determination to take a very radical approach to getting well. In the first few pages, it delivers the incantation that 'As of now cancer is beaten'.

It continues with an historical overview of the alternative treatments which were researched and became available earlier this century. These include Gerson diet therapy, perhaps the most thoroughly documented of all the alternative therapies. This places emphasis on detoxification with coffee enemas, nourishment involving a very strict intake of organic fruit and vegetables, and drinking freshly pressed fruit and vegetable juices which flood the body with live enzymes.

Amongst other treatments, we learn about the importance of vitamin C, vaccine therapy to stimulate the immune system, and a preparation called Complex ZA comprising a 'combination of zinc and magnesium complexed with ascorbic acid and prepared in an aqueous solution . . .'

Amygdalin, more usually known as Laetrile, is also discussed in depth, with emphasis on its correct use for maximum effect. Another very significant treatment for discussion is enzyme therapy.

Having presented an historical perspective, the authors suggest that, had communications been better, early this century, then each of the treatments discussed, instead of being pursued in parallel, could have been brought together to offer a treatment to provide us with a rapid cure for cancer.

In the final chapters, we learn how this could still be achieved today if we have the will. Gerson therapy is the foundation, with enzyme therapy, vaccine therapy, Complex ZA, Laetrile, vitamin C all part of the programme. Precise details of how to proceed are provided. However, it would be a brave person who would attempt such a programme without the supervision of a competent doctor who not only understands the complexities of the Gerson regimen but also feels able to recommend the adjunct therapies.

Whilst a comprehensive resource list is provided, we are left to find our own medical supervision. Nevertheless, the book makes fascinating reading and I for one have the ideas stewing on the back burner.

If you would like a copy, send a cheque for £5.00 made payable to Dr. D. Richards, PO Box 75, Sandwich, Kent, CT13 9RT. Diane Chapman
N E Lincs