Regular features

Sarah's Bit

Welcome to third issue of the Ovacome newsletter. Thanks to SmithKline Beecham we have a new format, but it's not permanent so let us have your comments and suggestions for improvement. Thank you to all who have contributed, and please keep sending your articles and snippets of advice.

The most exciting thing for me to report on (after my family's move to Bucks) is the Ovacome launch. This was a superb day, with such a feeling of goodwill and support among those present. One lady wrote to me... "...how much my family, friends, husband and I enjoyed our day at Windsor. We were at the finishing line to cheer our 5 riders back and then I sat on the grass and was surrounded by family and friends, it was a very happy day. The weather was perfect...". More reports later.

Ovacome now has 500 members, from all over Britain, which is tremendous in such a short time. The Committee is working hard to accommodate the influx, so please forgive us the teething problems of a new charity. We have our Registered Charity number and feel that we are really established as a national support network. A big congratulations to all those who've made it possible.

Alex, Sharon and the fone-friends are fighting hard to respond to new members and old. Through them we are fulfilling our aims to share personal experiences and link sufferers, although an immediate response is not always possible. Alex and Sharon both have full time jobs, so please make allowances for any delays. Suggestions, comments and offers of help are always welcome. Remember, Ovacome is your charity and to fulfil your needs we need to hear your views.

Information on treatments, screening and research is appearing in the newsletters, making a start towards the third aim.

We have made a good start towards our fourth aim of raising awareness of ovarian cancer through the extensive media publicity we have had. There have been articles in various women's magazines, national and local papers, as well as radio and television interviews. Well done to members who have prompted these.

As for me, I have started my third course of chemo - Taxol this time. After two treatments I am tired, thin, sore, aching, bald and eager for more. Going into the treatment I was quite negative, but one night in the bleak hours, doubled up in a pain that seemed to have been going on forever, a stray thought popped into my head along with inconsequential phone numbers and other clutter. "This poison might actually work". Now, my positive spirit is back on tap and although the nights are still long I feel optimistic and can plant bulbs for the Spring.

I am planning Michèle's fourth birthday, a goal which this time last year I thought I would never reach. Thank you dear doctors for your skills and to my friends and family for their support. Life's not always easy, but I'm very much alive and living it, and will be here to celebrate with Michèle.

I would like to say a special thank you to all the lovely ladies who write to me. Your support and encouragement is invaluable, and I hope you are supporting each other in the same way. After all, that is what Ovacome is all about.

Sarah Dickinson, Founder of Ovacome

Letter from the chair

The last few months have been an extremely busy and exciting time for Ovacome. We received our charitable status and launched ourselves officially as a charity on September 15th 1996. The day was enormous fun and a great success so thank you to all those who gave their time and energy and to all who came and supported on the day.

Thank you to Cindy Rutherford and Gilly Sinclair who hosted their second Ovacome sale and to everyone across the country who is helping to promote Ovacome. If you are hosting an event for Ovacome please do write in and let us know so that we can supply relevant information and literature.

Thank you to David Bullard who promoted Ovacome so successfully in Yorkshire. Thank you to Xenice for their generous donation and to everyone who has donated so much to Ovacome.

Welcome to Lorraine Golding who has volunteered to set up the Open House meetings.

Finally, congratulations to Kerry and Richard Ingleton who gave birth to baby Sam on 22nd October.

Alexandra Dargie
Ovacome Chairman

Tips

Eileen's Tips

Eileen has been having a rough time, but thanks to Taxol seems to be coming through. Here are some more of her tips. Thank you Eileen.

To help when your mouth is full of ulcers:

• Sensodyne do a super range of baby toothbrushes 0-3 years with Beatrix Potter figures on them. They are small and soft and perfect when your mouth is full of ulcers and it is essential to keep your teeth clean
• To accompany these Macleans make a baby toothpaste called Milk Teeth - very gentle and mild, it doesn't set your mouth on fire when the ulcers are there
• Cordosyl - an excellent mouth wash which relieves pain from ulcers - use twice daily. Available from chemists
• Adcortyl in Orabase is an oral paste which you pat on the ulcers and it sets over the ulcers and allows them to heal. On prescription.
• Nystan Oral Suspension is excellent for clearing Thrush in the mouth. On prescription.

Eileen

Sarah's Tips

• I used to put my Hickman Line down my lycra tights, down the outside of my thigh. I found this quite comfortable and not very obvious.
• On the constipation front, I found it best to start taking Co-Danthramer a few days before and keep taking it through the chemo course until a week later. I found this better than Lactulose or Fybregel as you need to drink a lot of water with these (you don't need to with Co-Danthramer) and I used to find drinking the water made me feel even more bloated.
• I bought my wigs from Selfridges. They were about £65.00.
• Whilst having ECF my hands went red and shiny and I got a couple of large blisters on my feet. I took vitamin B which helped.
• The ECF treatment made me feel quite horrible. I got a mouth full of ulcers and lost a lot of weight because everything tasted of cardboard, even water! This lasted about three months. I know cancer patients should eat certain foods and leave out others but I found during this time I had to eat what I fancied. Cornflakes with cold milk were a favourite at any time of day.

Sarah Fitch, Cheshunt

Research 

The Ovarian Cancer Screening Unit

The Ovarian Cancer Screening Unit, based at St. Bartholomew's Hospital, London, was established 10 years ago to undertake research into techniques to detect ovarian cancer at an early and treatable stage. The unit has completed the largest trial of ovarian cancer screening performed to date and last year launched a nation-wide research project to assess the impact of screening for ovarian cancer in post menopausal women over the age of 50 years, who are at low risk of developing ovarian cancer. In addition the Unit also runs The Ovarian Cancer Risk Advisory Clinic for women who are potentially at greater risk of developing ovarian cancer through a hereditary link. Details of both services are outlined below.

The Ovarian Cancer Screening Project

The Ovarian Cancer Screening Project aims to recruit 120.000 women over a three year period to establish whether a simple blood test can detect ovarian cancer early and thus save lives. Participation in the project requires an initial visit to St. Bartholomew's in order to be recruited to the research project. Participants are then randomly allocated by a computer into one of two groups. 50% of participants will be asked to complete regular health related questionnaires which will be sent to their homes. The other 50% of participants will be asked to have a blood sample taken every year. The blood sample may be taken locally if the GP surgery is agreeable. If the results of the blood test indicate further investigation is required women will be asked to attend for an ultrasound scan of their ovaries. The project will run for a total of 8 years. To be eligible for this research project you should be:

• 50 years of age or above
• Not have had a period for 12 months or more or have been taking HRT for longer than 12 months
• Have at least one ovary
• Not have a strong family history of ovarian cancer (that is 2 or more close relatives who have had ovarian cancer)
• Not have been treated for any type of cancer within the past 12 months

If you or any of your friends/relatives/colleagues fill these criteria and wish to participate or receive further information please write to Karen Sibley at the address below.

Ovarian Cancer Risk Advisory Centre

This clinic aims to offer specific personal advice to women concerned about their risk of developing ovarian cancer. After taking a detailed family and medical history we are able to assess ones risk and offer advice on preventative measures, present screening methods and future genetic screening. Our clinic is open to all women seeking advice on an individual basis.

Some women, however, may be at a greater risk of developing ovarian cancer due to a strong family history. The following outlines the familial syndromes. (It is important to note that these are extremely rare and account for only 2-5% of all ovarian cancers).

• Women with two or more first degree relatives with ovarian cancer (first defined as Mother, Sister, Daughter)
• Women with one first degree relative with ovarian cancer and an additional relative with breast cancer

For further information on the clinic please contact Laura Hitchcock, Nurse Specialist in Gynaecology at The Ovarian Cancer Screening Unit, St Bartholomew's Hospital, London, EC1A 7BE.

Poems

The Shell

I am in a shell
Life goes on around me
I don't care
A small part of me is here
Leave me alone
Waves of sickness pass over me
I curl up and let it carry me along

Tomorrow is finally here
I am reborn again
The grass is vividly green
The sun shines so bright
A bird's song pierces my body
I am calm serene
So glad I got through.

Marjorie Halewood, Fareham
Spring 95 After finishing chemo.

Hands...A handful of

They come in various shapes and sizes, usually in pairs
It's a universal language when clasped firmly for prayers
They are also tools that convey so much to others...
Ownership...holding dog leads and children to mothers
Anger by slapping, love by caress
Pain by clenching, comfort in duress
They can inflict so much and end someone's life
Hold pints of beer and perhaps strike a wife
But most important of all is the hand that heals
Extended out in love against the deck of cards life deals
Holding a hand kindly is often all it takes
To heal an open wound, to "up the stakes"
To give your hand to someone so full of fears
Is a lifetime to the face empty, but eyes of tears
But the "laying on the hands" is the greatest act of love
It's the nearest we can get to God's touch from above
To receive His healing power we're very blessed indeed
And a handful of that....love is all we need.

Only a prayer away
Tricia Tuhill, Aug 95

I wrote this poem last year for Peggy, our friend and healer, and dedicate it also to my sunshine, my mummy, also my friend and soulmate, Patricia, who held my hand for over 36 years. I send this with love, hope and courage to Sarah and all involved in Ovacome

Tricia Tuhill