Regular features
Letter from the Editor
Well, what exciting times we've had since the last newsletter: the Golden Jubilee celebrations, the World Cup, Wimbledon, the London Marathon and the AGM - which this year was held in Manchester. And what about the weather? - although as I'm typing the weather is quite nice, sunny and blustery, but always with that threat of a really heavy shower. Still, at least the evenings are light, and it never ceases to amaze me that we Brits can be so optimistic, the moment the sun does come out, then off come our clothes, however cold it is.
As usual the AGM was a fantastic way of meeting new faces and catching up with old friends. The speakers were excellent and my thanks go to all those who worked so hard to make it happen, especially Ruth in the office. Most of the sponsorship money from our Marathon runners has now been paid in; it seems as if the runners have raised over £10,000 between them. What an amazing amount! I know they are all feeling back to normal now and not even contemplating another run in the near future: I wonder why? If you are seriously interested in running for Ovacome next year, please contact the office and leave your details.
I am currently doing my final year of an MSc in Counselling and Psychotherapy, which means that I am carrying out some research into how ovarian cancer affects women. I intend to start collecting data in the autumn, so if you are interested in taking part in this research, please contact me through the office on 020 7600 5141. Thanks go to all of you who have taken the trouble to complete the membership details once again, it helps us keep the database current.
Well, I'm off to France next week for my holiday, so if you've booked a vacation too, really enjoy yourselves, but if you're staying home I hope the weather improves. Keep well.
Frances
Letter from the Chair
I hope this finds you all enjoying a few days sunshine! At last it seems that the summer is here.
It was wonderful to meet all of you who attended the Ovacome annual general meeting in July. Three wonderful speakers - Ian Jacobs, Professor at St Bartholomew's and the Royal London Hospital, Samantha Parkin from the Beechwood Cancer Centre and Karen Donnelly from St Mary's Hospital, Manchester - all gave wonderful presentations, and were kind enough to take questions afterwards. The committee regretfully accepted the formal resignation of Karyn Connor, for health reasons, and sent their love and best wishes, as well as grateful thanks for all Karyn has contributed to the charity over the past six years.
Once again we were a little disappointed with a low turnout, approx. 45 members. It was agreed that next year's AGM will be held later in the year, as we always seem to be clashing with major sporting events in July. We shall notify you of the precise details, when we have them, in the newsletter.
Your committee has been busy on your behalf. We have attended the latest NICE appraisals which are re-evaluating Taxol, and await their final determination due in September. We were delighted to accept an invitation from Aventis Pharmaceuticals to be part of a joint cancer groups reception which will be held at the Labour Party Conference, in Blackpool. A few of us will attend, and it would be wonderful to meet a few Ovacome members for an evening meal etc. (details via the office).
Also shortly to hit the headlines, the results of the ICON 3 study. We are currently preparing for the ensuing press activity, and as soon as possible will feature an article in the newsletter explaining the results of the study. The office staff continue their fantastic support of Ovacome members, and as we go to print, are due to recruit two new members of staff. We all look forward to welcoming them onboard.
Have a beautiful summer, with love
Louise
From our postbag
Meeting the press
I have just received the newsletter which mentioned the BBC broadcast about screening for ovarian cancer. I was interviewed and appeared at length in that broadcast. I have also recently been interviewed for Sky News on latest drug trials, and have done phone interviews for the Mirror and the Western Gazette, a paper based in Bristol. I also contributed to a feature for the 'discovery health' website. I'd like to tell others like myself that there is nothing to be afraid of. All the interviewers were very sympathetic and the interviews are conducted in a very relaxed fashion - usually just the interviewer and a cameraman. I am just a normal person, a teacher who was diagnosed in 2000 and had a recurrence in 2001. It is a chance to get our situation noticed and for other ordinary people to be aware of the issues involved. If you get the chance don't be afraid but speak out and make people notice!
Lesley Hogan
The Iron Lady
My sister Gill Turner had ovarian cancer and was lucky to pull through. Five years went by and the cancer came back in the bowel after we thought all was well. Gill is loved by everyone and lives life to the full. She never complains about the pains or the operations she has gone through. Because of her strength I have nicknamed her The Iron Lady. The nurses and doctors at the hospital have never seen someone with such a fighting will to live. It has been over 10 years and the cancer has taken over again but my sister still fights on.I think if Gill were the Prime Minister this country would be a better place to live. Myself, I am selfish; I do not know what I would do without my Iron Lady.
Jackie Prigmore
Essex
Every little helps
For Ovacome Day I decided that I was jolly well going to do something to raise funds. With the help of two friends I had stalls at two venues in Brampton on market day April 10th (each one from 9.30-11.30 am), pictured below. Also I had a window display for Ovacome for two weeks in the centre of Brampton. I arranged for the office to send me Ovacome merchandise such as notelets, keyrings and mugs and tea towels and away I went. I couldn't believe that we raised £60. My motto being every little helps!
Anna Clare
Cumbria
"Getting the boot"
For about three years, in the early 1990s I seemed unwell, everything seemed too much trouble and I longed for the weekends (so as not to have to rush off to work). My GP thought I had a fibroid and decided to leave well alone. I visited the lavatory every half an hour or so and asked for sleeping pills to enable me to have a better night. Hopefully, I would then have more energy during the day. Finally, scans, blood tests and other examinations found ovarian cancer - advanced stage 3. I had carboplatin at three-weekly intervals and quarterly check-ups. These then became half yearly, and annually. I was initially told I would be checked over for the rest of my life. I am now 60 and at my last check up to my astonishment my consultant (in his words) told me he was "giving me the boot". My CA125 level remains at a low level and he was satisfied to make this decision. I felt to begin with that my safety net had been taken away, but my file will not be destroyed and it is comforting to know I can return should I have any recurrence or worries. I hope this gives encouragement to other women.
Valerie Gross
London
In response to Gwynneth Baker
When I read Gwynneth's story it made me realise that not all of us who have had ovarian cancer are prepared to continue with chemotherapy when they have a recurrence. Having had two years (1990-92) of chemotherapy and an eight-year clear period I was surprised to find that it had raised its ugly head again. I was prepared to go back to conventional chemotherapy (which I did) but with an open mind to anything else on the market.
Thanks to a loving husband and a supportive family who understand the internet (which I don't) I was able to coax them into surfing the web for me for anything and everything that could help in the treatment of cancer.
We came across a new South African supplement made from a herb called Sutherlandia. It is new to the UK and has been successfully used in the treatment of cancer. I myself came off chemotherapy after 18 months (not with as low a CA125 as I would have liked but I was stable and feeling well). After I heard about Sutherlandia I asked my oncologist if he would mind if I took the pills: he told me to go ahead. For the last few months I have taken one tablet a day (not two as recommended) and have found a vast difference in my energy levels and general well being with an added bonus of my tumours decreasing a little in size. I have to admit that I would go back onto conventional chemotherapy if I had to, but who knows what tomorrow might bring?
I leave you with this final thought ladies: we are really lucky because there is treatment for us which is improving daily. For some, e.g. those with spinal injuries, Parkinson's disease, senile dementia, to name a few, no cure is as yet in the pipeline.
For anyone who is interested Sutherlandia can be obtained from REVITAL, 78 High Street, Ruislip, Middlesex HA4 7AA. Freephone
0800 252875. It costs £18.99 for 60 tablets.
Sutherlandia can also be obtained from Biogenesis Laboratories in the USA. Email info@biogenesis.co.za or visit www.biogenesis.co.za
Hair removal
I read with interest the letter in the Spring issue regarding hair removal. I was surprised to learn that the two ladies concerned do not take any tablets or HRT. Has either of them consulted their GP? I say this because of someone I know in their mid 40s who developed a long beard under her chin. Because it was such a sensitive subject people she knew just stared but said nothing. It took her years to get 'treatment' on the NHS. Sometimes, she resorted to burning it off, which I think was most unwise! Otherwise it could have been shaved off. Sometimes she did this and started new growth. Surely the problem in all women with hirsuitism is hormonal, i.e. an imbalance of oestrogen, progesterone and testosterone. The correct hormone balance could be determined by a blood test. The lady above had to beg for private treatment through a charity. She argued that she could not look for work effectively and attend interviews wearing a beard. In the short term the use of Immac hair removing cream or electrolysis might be useful.
Mary O'Dwyer
London
