Originally published in June 2003 icon
OVACOME offers informed support to all those who are touched by ovarian cancer, helping them put fears into perspective and regain quality of life. Small, vita and very personal, this UK support group provides patients and their families with handouts on treatments, screening and research. It raises general awareness of a condition that affects 6000 women every year and - most important of all - links new sufferers with women who can talk realistically and often reassuringly about what to expect of diagnosis and treatment, because they themselves have experienced it first-band.
OVACOME was inspired and founded by Sarah Dickinson, who developed the disease at 31, whilst expecting her first child. A prenatal scan picked up an abnormality on one of Sarah's ovaries and soon after Michele was born in 1995. this new mother learned that her condition was already advanced, having spread beyond Her ovaries into the abdominal cavity. Sarah determined to enjoy every possible day with her family, but still made time to setup a support group: it seemed to her that compared with high-profile diseases like breast cancer, ovarian cancer was little discussed, so women sufferers felt sadly isolated: "I've found I can talk to another woman with ovarian cancer and discuss things I couldn't with my own family because they are too distressing" said Sarah at the time.
Few doctors were likely to pass on her personal prescription for a sore stomach
Few doctors were likely to pass on her personal prescription for a sore stomach: "Baileys and a hot water bottle". While she was actually undergoing triple-drug chemo, Sarah wrote about what would benefit women sufferers in Good Housekeeping magazine. She explained that it was not just the effects of surgery and painful clinical examinations that needed airing, but practical considerations "such as finding clothes that won't rub the scar that runs like a fat worm down my front and needing a fun, go-faster haircut to counter the effects of chemo". If women could establish phone, fax, e-mail and postal links, then, suggested Sarah, "we could talk, help each other and know were not alone".
Thanks to Sarah and the response she received, subsequent sufferers (many with far more promising prognoses) have found OVACOME ready and waiting to help. In September 1996 the charity was launched with a sponsored bike ride from London to Windsor. Two years later the first paid workers came on board and OVACOME's office at Baits Hospital in London (moving to University College Hospital soon) now has a busy staff of five. Everyone who works for the charity has personal experience of ovarian cancer be it as a patient or relative. Most are survivors who can give hope and comfort because they have, encouragingly, done well themselves. Early diagnosis remains the main medical challenge but when detected before it has spread beyond the ovary, the survival rate from this form of cancer is, after all, a reassuring 90 per cent. So from the very first phone contact, an anxious caller can count on upbeat and caring back-up, though the charity stresses that it does not give medical advice.
Actress Jenny Agutter has been deeply involved with the charity from its outset and a year later dedicated a brand new ovarian cancer resource centre at the Royal Marsden in Chelsea. The charity has developed a telephone counselling service and publishes a quarterly newsletter as well as providing fact sheets and supportive videos documenting real case histories. Its been welcomed by clinicians, drugs companies and other cancer charities alike.
Subsequent sufferers have found OVACOME ready and waiting to
In financial terms, OVACOME is certainly no giant, but the Â£80,000 it raises each year (through donations, events and sponsored activities) now provides exactly the therapeutic links Sarah Dickinson so missed.
There's a nationwide telephone network, FoneFriends, through which callers can connect with another volunteer in their area whose situation matches their own. FoneFriends can also link family members - husbands, siblings, parents - to others who have been through what they now face.
Louise Bayne, OVACOME's recently appointed Director steering OVACOME into a significant new phase for both present members and future sufferers. It is now the official channel through which the interests of affected women are represented to the National Institute of Clinical Excellence. Issues such as the length of time taken to diagnose women and levels of ignorance about genetic links will now be addressed head on. OVACOME, assures Louise, will never seek a sensation-seeking approach to these life-saving issues. But by raising a determinedly "responsible, reasonable and accurate" voice, this charity means to save lives as well as improve them beyond measure for women with ovarian cancer - just as Sarah Dickinson dreamed.
For further information, to make a donation to OVACOME, buy their po1o shirts, notelets, or deep turquoise ribbons, please call 020 7380 9589 or visit the website www.ovacome.org.uk.