Regular features

Letter from the Chair

As the evenings begin to lighten, and thoughts turn to spring, so comes the time to tell you our plans for the new year. As always we hope to build on past successes, and move further on with meeting our objectives: to provide contact, support and information, and raise awareness of the horrible condition which unites us.

Your committee recently held its second strategy day. This was an opportunity to reflect on our direction, and change or reaffirm our aims. Usually when we meet, there is so much catching up with friends, and day to day management, that we have less time than we would wish for to look at our achievements, and not only where we are going but which route to take. The strategy day gives us that time. Much of the day was taken with addressing the success of Fone Friends network, and looking at the good and the less good therein. It really is a successful service, and one of which we are justly proud, but as with all things which rely on volunteers, sometimes vulnerable. Our Fone Friends co-ordinators are a fantastic group. All having experienced ovarian cancer in some way, they now help others through a very difficult journey. We feel confident that those of.you wishing to be put in touch with others in the same boat will be pleased with the results!

Publications and other information sometimes feels like painting the Forth Bridge! Always under review, and greatly in demand. We have received some excellent advice on how to improve our current stock, and we continue to keep a close watch to insure our information is of the highest calibre. Any of our many health care professional members who would like to help with this particular role would be most welcome! We are currently reviewing our web site, and feel it needs to be freshened up. As many of you know, not always an inexpensive undertaking, so any web wizards out there, please get in touch. Raising awareness, as many of you may know, has been an area of enthusiastic debate! It is always difficult to strike the right note. What is certain is that we will continue on your behalf to bring a greater profile to ovarian cancer amongst the general public. Last year we made some fantastic inroads, and this year we hope to capitalise on those successes. Once again, I ask for your help. In the past we have asked members whether they would be prepared to be interviewed by press/magazines etc. Those of you who have been called upon, have been FANTASTIC, and I hope the process was as painless as promised. I d like to tell you about a call I received last week. As a part of Ovacome Day last year, I was interviewed for a small piece in Woman magazine. I spent an hour chatting on the phone to a lady called Helena; and several weeks later the piece appeared. I thought nothing more of it. Last week I had cause to remember it clearly. Apparently a lady had taken the magazine on holiday, and upon reading the piece felt the symptoms described sounded familiar. On her return she was seen by her GP and later diagnosed with ovarian cancer. My heart goes out to her, but on hearing this I felt almost joy; for as hard as this position sometimes gets, I always said to myself: If one woman gets diagnosed a bit earlier, it s all worth it. Who knows if it has made a real difference, but it gives me renewed passion, and proved, if proof were needed, that we can make a real difference to families across the country. Who knows how many of the millions of people who read our members stories last year, will have cause to thank those members for taking that small amount of time to tell their stories. If you want to join our press list, and make a difference this year, please do contact the office. For those a little shy of the media, there are always many ways you can help, and the perfect start is Ovacome Day. Let s use this year s event to honour Sarah, our founder, who wished that there could be greater understanding of ovarian cancer. This time I know I can say with all sincerity: YOU CAN MAKE A DIFFERENCE!!!

Love as always
Louise

Letter from the Editor

Welcome to the Winter edition of the Newsletter. Some of you already know me as I work in the office, but for those who don t I will just briefly describe how I became involved with Ovacome. I joined the committee in 1 999 just a year after my daughter Debbie died from ovarian cancer. She knew I would try and ‘do something' but I never dreamt I would become as involved as I have. My role as a committee member was publications officer. When Ovacome wanted me to produce a booklet about ovarian cancer I was quite overwhelmed but went about the business of setting myself up with a computer. Eventually it was published and you may have seen Living with Ovarian Cancer. I d like to thank Debbie Howells for her support and encouragement with this venture. I hope you will enjoy this issue: my intention is to encourage you to be as involved as much as you can be with the newsletter. My experience on the phone has shown me that you all have your own opinions so please tell me how you would like to see the newsletter develop. I know that there are many of you who are just too modest to submit articles, but have a lot to say, and let s not forget your family and friends - this newsletter is for them too, so come on, put pen to paper and write in.

In the spring issue we will be introducing a Problem Page, not for medical problems, but for emotional and relationship problems, and we are pleased that Sheila Dainow has agreed to be our ‘Agony Aunt' . Sheila is the author of nine published books, and is a counsellor supervisor and trainer. She is the mother of our very own Jo Wright, and has direct experience of supporting loved ones through serious illness. Sheila is well able to help with personal problems, and I d really like to welcome her on board. So please let those letters roll in to the office, addressed to her and marked confidential. Each letter, whether or not it is published, will receive a reply, and be assured that anonymity and confidentiality are paramount. We were trying to find a really interesting calendar for our members but couldn't, and thought what a terrific idea it would be to use our own photographs. So a photographic exhibition will be held at this summer, and the most suitable will be published in our very own calendar. More details in the Spring issue. January is a time for resolutions and promises to keep fit, but it really is too cold! Imagine going swimming? Brrrr. I've noticed that the afternoons are getting longer now and even though it s so cold I love walking with my dogs. As long as the sun s shining I m OK. Until the next time, keep well.

Francis

From our postbag

Keep well during chemo
I would like to pass on my experience of keeping well during my recent chemotherapy treatment (carboplatin and taxol). I paid special attention to what I was eating and made sure I had plenty of fresh fruit and vegetables. I incorporated a lot of garlic and ginger into everyday salads, and I also drank lots of fluids and loads of water. I m a qualified reflexologist so I was able to give myself some treatment for any pain or discomfort. I do hope this information will be of some use to others. If anyone who lives close to my area and would like to have reflexology, I would be only too happy to do this.

June Morgan Greete
Ludlow, Shropshire
Tel. 01584 810233

Oocyte donation
I was told I had ovarian cancer at the age of 18, and luckily became a member of Ovacome. I've really enjoyed reading inspirational stories, and have learned so much from the newsletter. I m now 26 and have been given the all-clear, and have six monthly checks-ups. I was so young to have my ovaries removed, and am now unable to have children of my own. My consultant referred me to our local reproductive unit, where I found out that there is a national shortage of potential oocyte donors, the waiting time for treatment is not just months, but years. During my first visit I was told that you had to be 25 to be put on the waiting list, and it could possibly take ten years before I might be helped. At the time I was 23, and I feel so strongly that when someone is only 1 8 when her ovaries are removed, special allowances should be made so that she goes on the waiting list much sooner. Having said this, the doctors at the Reproductive Unit in Cardiff have been very supportive, keeping my partner and me informed of any change. I would also be interested to know if there are any events happening in South Wales for Ovacome Day (or any other time).

Editor's Note: if you would like to contact Clare please phone the office.

Too much hair?
I wonder if there are any other members who have had a similar experience to mine (and two of my friends) we have all had the same treatment (carbopiatin and taxol) and are really distressed to find that we have been left with a very fine beard, and downy hair on our faces. Two of us are taking HRT, and wonder if this has anything to do with it, any suggestions?
Angela Horseman
Solihull

Editor's Note: Angela can be contacted through the office.

More on memory loss
May I make a public reply through your pages to Marylyn Blackmore who writes (Summer 2001) to ask whether others have experienced side effects like hers, i.e. memory loss and impairment of verbal skills. I was so relieved to read her letter as I have always been one of those women who carries her diary in her head. I had Carboplatin and Taxol as Marilyn had and I too often found - and still find - my memory poor, especially my short-term memory. Often I cannot recall what I did yesterday, unless I have written it down. I still find myself double-booking my free time! During treatment I also experienced inability to find the words I was looking for and, since I specialise in words as I am a writer, this was a dreadful thing. Also I lead a reading group and have done so for three years: each time I go to it now I find myself having great difficulty recalling people s names, something for me that has always been unheard of.
Like Marilyn s GP I supposed it to be due to shock. I never mentioned it to anyone, but behaved like Marilyn, trying to find ways of coping with it. However, after reading Marilyn s letter I can t continue to believe that shock is to blame. I hope, Marilyn, that your difficulties are diminishing rapidly by now. And if there is anyone else out there suffering a similar affliction my heart goes out to her. The side effect of treatment which most upset me was hair loss. I wrote a great many poems about how I felt. I enclose this one.

Dread of Hair Loss during Chemotherapy Treatment
What shall I do the day when I wake up
To find my hair spread upon my pillow
But separate from me?
How can I meet my face
That morning in the mirror?
What shape will my skull be?
Will its skin be dark like
All the rest of me?
Will it shine forlornly under lamps
And go about upon my body
Like a question mark?
Shall I cover it,
Pretend it isn't there?
Or shall I wear it boldly, like a stare?
Oh but how shall I sweep up the deadlocks
Without much grief and weeping?
How shall I reckon with the morning when
I find my hair become a stranger to me?

Be warned!
My wife Stephanie was diagnosed as having ovarian cancer, she duly had surgery followed by chemotherapy.
We have contributed to private health insurance for 30 years and maintain our contributions even though we are now retired. As we know, no private health scheme accepts anyone with a chronic condition.
When, as in Stephanie s case, an acute life-threatening condition emerges in a private health scheme member, the scheme management may define the condition as ‘chronic' and abrogate all treatment and surveillance for the condition arbitrarily so defined, in other words the scheme management made the decision to ‘write off' the scheme member, in this case my wife Stephanie.

That management consults ‘a medical advisor' , it is said and in my wife s case, imposes the ‘duty' of notification upon a registered nurse. It is these personnel who have to implement a small print clause enabling the writeoff. Of interest is the absence, anywhere in the scheme rules, of printed warning to the effect that any condition which is, or becomes, malignant will at some point in time, be declared ‘chronic' .
It seems reasonable to advise subscribers from the outset that carcinomatosis is likely to be defined as ‘chronic' at some point soon after acute phase treatment and so be excluded from private health scheme support. Many will have contributed huge sums in ever-rising annual premiums only to find themselves declared ‘chronic ... and out' . Of course, a member with metastatic ovarian cancer can still expect to have an ingrowing toenail surgically treated, and as long as any postoperative infection of the nailbed does not attract the definition ‘chronic' can still expect that antibiotic treatment and dressings for the infection will be supported by the insurer.

There are now several schemes, which have glossy brochures detailing features and benefits. The costs are set out, but the limitations and exclusions are glossed over... .until the harsh reality must be revealed. Much is made of the concept of these schemes and that private hospitals greatly benefit the NHS, but in fact it is the NHS that has to pick up the private health insurers dumped cases, dismissed by way of the unpublicised but ever present faculty built in to all insurance schemes: "the write-off" clause, a "small print" inclusion. In most branches of insurance there is a tacit acceptance adopted by the insured, in respect of certain perils, but in healthcare, and especially among the most vulnerable....? Is this to continue without widespread disclosure?

Peter Walsh
Chingford London.

Editor's Note: If anyone has had a similar experience to Peter and Stephanie, please let us know.