Regular features

Letter from the Chair

Welcome to our summer newsletter. What a frantic few months! It seems like only a week ago I was writing to you about our plans for Ovacome day. Well, it has been a fantastic success.

As you will recall, this year's events centred on a photographic exhibition by Andy Scaysbrook. Andy, whose mum sadly died from ovarian cancer, wanted to help raise the profile of the disease by staging an exhibition of celebrity women. It has taken over 18 months' hard work and dedication, but on 6th April we staged the opening party, and the consequent press activity surpassed all our expectations. There were articles in most of the daily papers, magazines such as Hello, Woman's Weekly, Eve, Woman, as well as radio interviews. I had the 'pleasure' of being interviewed on GMTV. The film crew were great, and my children, Charlie 5 and Eleanor 2, were very well behaved (for a change!). The least said about the guinea pig escape and midnight recapture in the pouring rain the better. Suffice to say, they probably won't think that such a good shot in the future!

We estimate that at least 30 million people heard about ovarian cancer as a consequence, and to all of you who responded to our call for help with the media, a huge thank you. Thanks, too, to the team at the St James Club, who hosted the exhibition and fabulous opening party. Our gratitude to Mr Venison, manager, and Rebecca Glover, banqueting manager. Thanks too go to Lisa and Georgie at Band and Brown, who managed a quite superb press campaign. We received far above what we could have expected; as well as being extremely tolerant with a press 'virgin', they were great fun to work with.

Most importantly we are indebted to Andy and his family. It takes something special to turn personal grief into something positive, and Andy and his family have benefitted many by their bravery - not only those who found out about Ovacome as a consequence of the event, but also those who will have cause to remember ovarian cancer at some point in the future.

The charity has been busy in other areas as well. We were invited by N.I.C.E., the National Institute for Clinical Excellence, to give expert evidence on its appraisal of Topotecan, a chemotherapy agent they are currently reviewing. It has been an interesting exercise, and one we hope to participate in again in the future, when other ovarian cancer treatments are reviewed. The results of the Topotecan review should be released later in the summer.

I had the pleasure of being invited to a meeting of ovarian cancer charities in New York, the first such event. Sponsored by Astra Zeneca, the day-long workshop aimed to give the company a view of the patient perspective, and how drugs companies can improve their practices. It was wonderful to put faces to the many names from around the world, all of us confronting the same frustrations and difficulties. As you would expect, there were many differences too. As a consequence we are establishing an international ovarian cancer forum, to share news, ideas, and problems, and I shall report news of this to you once it is up and running.

It is with the greatest sadness that I have to report the death of Diane Chapman. Diane has been a staunch supporter of Ovacome from its beginning. A passionate believer in helping ourselves to health, she was a regular contributor to the newsletter, writing the 'With complements' page. This led to her writing a book on complimentary therapy, Choices. Diane was passionate about a woman's right to be involved in decision-making, and working alongside the medical team. As a committee member, she represented you with zeal, and compassion, as a Fone Friend she was caring and supportive. I know I speak for many of you when I say how much I miss having her at the end of the phone. Diane always spoke with a smile, or so it seemed, and you always put the phone down feeling better than when you picked it up. Our deepest sympathy goes to her daughter Hannah.

As we go to press with this issue of the newsletter, we are also finalising plans for our 2001 Annual General Meeting on 7th July at the Royal Marsden Hospital - an exciting opportunity for all our members who are able to attend to share ideas, news and experiences, to hear some fascinating speakers, to elect a new committee and to kick off plans for the coming year. More about this in our Autumn issue later this year.
Louise

Letter from the Editor

Welcome to the Summer 2001 issue of the Ovacome Newsletter. I hope you enjoy reading it as much as I have enjoyed collating it.

It does not seem possible that summer is already upon us and that we are actually able to enjoy some beautiful sunshine. Our daughter Grace was one on 5th June and I just can't believe that the first year of her life has passed so quickly. She is more or less walking and is just so beautiful and angelic. David and I have now started on the adoption ladder and it is hoped that by the end of this year we will have completed our family. I have been in remission for almost five years now and this is third time lucky for us with adoption. For all you infertile ladies out there - DON'T EVER GIVE UP. David and I are proof enough that perseverance and determination do pay off.

When the sun is shining, it makes all the difference to both our well being and general health. I always feel happy (and the foster children can play outside!!!) and my skin can turn a golden brown. I just feel so much healthier and content.

On a sadder note, I am sorry to say that Diane Chapman has unfortunately recently passed away, and there are two articles on pages 9 and 10 dedicated to her memory. Some of you may find these particularly distressing but we at Ovacome feel it is important to mark Diane's death in this publication as she has spent a lot of time in the past writing some brilliant articles under her column - 'With Complements'. Diane was amazing and even when her chips were down and she was suffering with ill health, she still made time for others, whether on the telephone or through her column. She will be sadly missed by many of our readers and all of our committee.

I would also like to take this opportunity to congratulate Andy Scaysbrook for his amazing photographs displayed in London on 6 April to commemorate Ovacome Day. Unfortunately the turnout on the evening was a little disappointing but hopefully Andy will continue to take some more photographs and in the future these will be turned in to a book to be sold to help Ovacome continue with its work. Andy made an emotional speech in memory of his mother who unfortunately died of ovarian cancer and Louise spoke following this. In my opinion, it was a very enjoyable evening and nice to see other Ovacome members in a relaxed environment.

Even though this is my penultimate newsletter, before I hand over to the new editor I would like to know how you feel about instigating a problem page. We have a good medical advisory board and I think that many readers could benefit from this facility. Please let me know your comments, and if you have a problem that you would like answered please write to me at the Ovacome address and I will endeavour to get your questions answered.

Well, enough from me. Enjoy the issue and don't forget to keep on sending in your letters, problems and photographs for future newsletters.

Happy sunbathing.
Debbie.

From our postbag

Mrs Enid Flowers
Miss Lydia Walley has sent a card to the Ovacome office for the attention of Mrs Enid Flowers. The office does not have her address and so I am hoping that by placing this piece in the newsletter I will be able to forward the card on. Do you know Enid's address? If so please contact the Ovacome office.

Side effect - can you help?
I have had what I think of as a side effect from chemo which I have never seen mentioned anywhere. I am a professional and articulate person who became very concerned when, after a few sessions on Taxol and Carboplatin, I lost my verbal communication skills. For example, I could not remember my 16-year-old's name or the names of common household objects. I lost whole sections of memories.

I am pleased to say that these effects were temporary but I could not correlate them with treatment sessions. My GP was not concerned as he considered them a symptom of shock. By the end of my treatment to the outsider things were OK, but in truth I was getting better at hiding the effects. Everybody became 'sunshine' and I hung grimly to the phrase 'anybody want a cuppa?' and 'think, think, think' would give me some time to find the right word(s). After treatment, when I was in remission for four months, all signs of this loss of function disappeared, but when I went back to treatment the effect returned.

Has anyone else had anything like this?
Marilyn Blackmore
(Address from Ovacome office)

2001 Imperial Cancer Research Fund Race for Life
I am writing to inform you of the Imperial Cancer Research Fund's Race for Life event. This is a 5-km run or walk, exclusively for women, to raise funds into research for cancers that affect women. I took part in Derby's event last August and raised over £300. Nationally £5 million was raised, hopefully a large proportion of that for research into ovarian cancer. There are over 70 races around the country and I was surprised that it had not been mentioned in your magazine. It is a very emotional occasion, as everyone who is participating has either had, or knows someone who has had cancer.

Keep up the good work Ovacome, I always read the articles with interest.
Suzanne Walters

Editor's note: I do apologise for not getting this information into an earlier issue - I myself participated in this event for the first four years after my chemo, but unfortunately am not able to do my local run this year. Like Suzanne, I would highly recommend taking part. The atmosphere is great and it really does not matter how fit you are - a walk is as enjoyable as a run.

For more information call their hotline on 08705 134 314 or visit www.imperialcancer.co.uk/raceforlife.

In memory of my mum June Muttram (Albury)
I want to share my story about my mum, but I don't know where to start. It is now three years since my mum lost her VERY brave fight against ovarian cancer. My mum was the bravest lady I have ever known and I am so glad she was my mum. I can remember the day she was told that she had cancer (I hate that word). My dad, sister and I were at the hospital to try and give her all the support she needed, it was the worst day of our lives and I will never forget the look on my mum and dad's faces - it was heartbreaking. I really miss my mum and think about her all of the time. I still cannot come to terms with losing her and what makes it worse was that she was only 48 years old. My children have lost a great nanny, we have lost a wonderful mum and my dad has lost his lover, wife and partner. We all keep mum close to our hearts and always will. I knew some of your readers knew mum from Harlow hospital.
Paula Ellis

In appreciation of Sandy Lawson
We're sad that we have lost Sandy from the North East Fone Friends' group, but none of us would have missed the opportunity to know her. You may remember her account of her participation in the transplant games in the Autumn 2000 Ovacome newsletter, together with her medal picture. She was a brave and determined lady.

Sandy became a regular at our coffee meets and it soon felt as though we had all known each other for years. Her great sense of humour and anecdotal skills enlivened our gatherings and she was excellent at ferreting out helpful information for us all from various sources.

When we got an e-mail group organised, messages from Sandy were eagerly anticipated - it's not often you laugh out loud downloading an e-mail! The computerised Christmas card her dog sent to mine was much appreciated, a replay often requested by my granddaughter, and still driving the dogs into a frenzy of barking each time they hear it.

At Sandy's funeral, in a chapel full of friends, an overwhelming feeling of love mingled with sadness. Brian, her husband, finished his valediction by quoting what she had written for the Ovacome Newsletter, "If you are reading this and you feel as if you are alone, you're not: your friends are here. Please get in touch and I'm positive you'll help yourself by getting involved".

So for the last time I sign off, as I did to her, 'Love, the MS', for Sandy had nicknamed me the' Mother Superior'.
Anonymous

Scalp Cooler
I have just received my copy of the Spring edition of Ovacome's newsletter and would like to say what a wonderfully put together magazine it is. The graphics are perfect and every article seems to hold something of interest. So it was with great interest that I read Enid Howen's article on Cold Caps.

I am the chair of Barnet and District CancerLink. We are a very busy support group, caring for people suffering from all forms of cancer, giving them alternative therapies such as healing, reflexology, physiotherapy and manicures etc.

Last year our very enthusiastic committee thought that we should do something just a little outside the run-of-the-mill meetings. So we decided that we would like to donate a Paxman Scalp Cooler to the chemotherapy lounge at Barnet General Hospital. The hospital were delighted with the idea. So through community events, raffles, market stalls, car boots and donations we set about raising the £6,000 needed to buy the hospital their Paxman Ice Cooler, something that is beyond the means of the NHS Trust.

We reached our goal on 20 October 2000, when the machine was presented and installed in the chemotherapy lounge at the hospital. The device is designed to treat two patients at the same time and is placed on the patient's head and worn throughout the administration of chemotherapy. It cools the scalp and reduces the amount of drugs reaching the hair follicles, thereby reducing hair loss. It is claimed to be more comfortable to wear than other scalp-cooling equipment. The staff in the chemotherapy lounge inform us that the machine is proving to have a good success rate and being used all the time.

So now patients undergoing chemotherapy can benefit from this scalp cooler with the thought that they can avoid one of the most distressing side effects of losing their hair.
RL Spicer
Chair, Barnet and District CancerLink

Book Reviews

Say No to Cancer
Patrick Holford
This book has changed my life and I commend it to all the readers of this newsletter. My GP recommended it to me at the beginning of the year 2000. Having read it, I started to enthuse to others and discovered a seminar venue almost straight away (thanks to the observant Ruth Payne). I was there like a sponge. For six hours I hung on every word, noting all the details that were especially for cancer sufferers. It has changed my life: I am far more energetic. I have lost more than a stone of the 3 stones I put on after chemotherapy. My driving belief is that if what I was doing before I was diagnosed with ovarian cancer contributed to the development of the cancer, then change could only be good for me.

This is not an alternative therapy but a way of life. You could say that it is like a religion because you have to devote yourself to it. Equally there are moments when I sin, but hopefully not too many times. I certainly do not want to undo the good that has resulted from a change in life style.
Helen Bayley

441/2 Choices You Can Make If You Have Cancer
Sheila Dainow, Vicki Golding & Jo Wright
"… an invaluable guide not only for patients themselves but also those closest to them" - Ian Jacobs, Professor St Bartholomew's Hospital, London

Jo Wright (Ovacome administrator) was diagnosed with ovarian cancer in 1997 and has co-written this both innovative and informative book along with her mother Sheila Dainow and Vicki Golding, a breast cancer sufferer.

This is a different and special kind of book for all concerned with cancer. It is a guide to the emotional and practical problems that arise for people going through cancer which can be used to dip in to whenever needed, it gives you choices when it appears there are none.

The book combines personal comments, different options for every scenario and advises you on how to best approach the different stages. It begins at pre-diagnosis and guides the reader through the most common problems, such as: should I tell people? and should I read up on all cancers? It concludes with life after treatment and the readjustment to 'normal' living.

There are no right or wrong answers - the key to this sensitively written book is to take the option that works best for you.

I have read the book myself and only wish that I could have read it when I was going through my ovarian cancer journey 5 years ago - I highly recommend this read.
Debbie

Copies of the book are available via the Ovacome office for a charge of £8.99 (inclusive of p&p), £2 of which will be donated to Ovacome thanks to a deal negotiated by Jo with the publishers. Cheques should be made payable to Ovacome.

Linda & Roy Cecil's Diary
Linda was diagnosed with stage 3 ovarian cancer in 1997. Roy and Linda kept a diary of events through testing, diagnosis, surgery and chemotherapy. I read their story before publication and found it very inspirational and encouraging. I highly recommend you to obtain a copy. Linda is a very positive person and this comes across strongly through the book. I have also met Linda and Roy previously: once at the production of the video and again when we asked them to help launch the patient information pack in October 1998. They are a devoted couple and have used their own personal experience to offer hope to other sufferers. They are paying for the publication of the book themselves and copies are available for just £10 of which £5 will be donated to Ovacome. If you would like to purchase a copy please telephone them on 01753 593224 or email them on DrRoyCecil@cs.com.

Linda is currently undergoing more chemotherapy but is responding well and still managing to stay positive through her ordeal. So far this book has raised an astounding £1,024.75 for Ovacome and all the committee would like to say a huge thank you for all of their hard work and generosity in sharing the profits with our cause. Please do read this book - it is a must.

Fone Friends

North-East
The Fone Friends in the North East meet regularly for coffee. For further details, please contact the office.

Midlands
Support Groups in Area 11, the Midlands, are growing. There are established groups at New Cross Hospital in Wolverhampton and Good Hope Hospital, Sutton Coldfield. There are thriving support groups in the districts of Derby and Leistershire. At The White House, in Dudley, a group is growing steadily, while in The Potteries the beginnings of a group are being established.

If you live in Area 11 please contact your specialist gynae-oncology/Macmillan nurse or telephone Helen, your co-ordinator, to find out more details. She would like to hear from other groups in her area. Please call on the .

First contacts
Ovacome is having great difficulty maintaining a rota of people to speak to those who intially contact us or who want to speak to someone who has experienced ovarian cancer. If you have had counselling, nursing or similar background and feel you could help please phone the office to find out more.
Ruth Payne