Experiences
It runs in the family
When my maternal grandmother died of ovarian cancer in August 1968, we thought no more about the cause of her death. One of her sisters was also known to have died of cancer. Five years ago my mother was also diagnosed as having ovarian cancer following a scan to look at an aneurysm. The cancer may not have been found so soon or successfully treated if she had not had the scan.
It has become clear that ovarian cancer is the 'silent killer' - it is difficult to detect and most patients are not aware they have the disease until it has a strong hold and is well developed.
It was following my mother's diagnosis that my sister and I contacted a team of doctors at Cambridge University who are conducting research into the possibilities of ovarian cancer being passed through families genetically. I was referred to the University Hospital, Cardiff, where I had a full hysterectomy as a preventative measure. I feel I made an informed decision. I am now on HRT tablets having tried implants and patches.
I was 45 years old when the operation was done and although I had had one miscarriage, there had been no other pregnancies and I was well used to the idea that I did not want a pregnancy at this time in my life. I had come to that decision a few years earlier having had fertility treatment which may have worked if I had persevered longer. However, my father died and my mother required a certain amount of care. I made a conscious decision to stop trying for a pregnancy and concentrate on work and a career.
My sister is visiting a specialist on a regular 6 monthly basis and is also undergoing some tests for Cambridge. She was advised to go through the change before she has a hysterectomy.
Cancer is often more successfully treated the earlier it is diagnosed. Until the scientists find a way of preventing the cancer occurring we must do all we can to raise awareness, help with fund-raising for research and support those who are fighting the disease or are known to be at risk.
Chris, Llanwrtyd Wells
Alexandra
Having read Sarah Dickinson's GH article on her feelings of her life, her family and her imminent death, I felt so inspired and determined to promote her cause and to help her set up Ovacome. A friend and I decided to cycle from Land's End to London, to raise awareness and funding.
As we set about preparing for our trip, despite support from colleagues and friends, I was continually but gently reminded of the potential hardships of the journey; rain, wind, traffic, not to mention the agonised faces of those who retold their own experiences of being saddle sore. These reminders may have been necessary, but they were cast aside with a nonchalant smile simply because I knew that if I even began to think about them, then I wouldn't even attempt to cycle 400 yards on a bicycle, let alone the 400 miles. So blindly I persisted with the necessary preparations, and after a fraught 2 weeks we had a meticulously planned itinerary and all the necessary equipment.
We arrived in Penzance in glorious sunshine and as we set off on the 11 mile cycle down to Land's End I felt an intense sense of exhilaration, purpose and atonement. My thoughts, at this time, as at many moments during the trip, kept focusing on Sarah and her family and also on Alice and her family. Alice is a delightful little girl in my class at school, whose mother, Loiuse, died of ovarian cancer 18 months ago, leaving behind a loving husband and four beautiful children aged between 3 and 9. As we approached Sennen Cove I paused and took in the pervading air of sequestered calm I was deeply moved as I thought of those who would have loved to share with me in the beauty of this moment, if only they could. That poignant moment of impassioned joy at the wonder of creation and of such sadness at the injustice of Sarah and Louise leaving behind this beautiful world and their children about whom they are so passionate still stirs deep emotion. With a heightened sense of purpose, I pedalled onwards towards my bed for the night.
The solitude of the sleep was interrupted by the gentle murmur of the sea. With resolution, and a little trepidation, we rose and began what was to be an enriching, significant and fructuous journey. On our travels we met people who have enhanced our lives through their conversation, generosity and interest in Ovacome. The discomfort and agony that we suffered at the beginning of the journey and the most unusual way we walked, once dismounted from our bicycles, certainly helped to attract attention and always proved to be a starting point for conversation in the cafes, pubs and shops where we stopped for refreshments (and ice to alleviate our afflictions!).
As the journey became easier and the miles rapidly diminished we were excited about reaching our destination of Dulwich Park where we were to be greeted by Sarah and her daughter Michele and many of the children from school. With an enormous sense of relief and achievement we cycled through the park gates, 8 days after our journey began, to be met by cheers, balloons, smiling children and clicking cameras. After the final lap of our trip around the park, accompanied by the children on their bicycles, the euphoria calmed down and we went out for tea with Sarah and Michele.
End of the sponsored bike ride, Dulwich Park
We would like to extend our thanks to all those our supporters, families and friends who have given their time, money and support to Ovacome and a particular thanks to the parents and children of James Allen's Preparatory School whose generosity has been overwhelming. But most of all we must thank Sarah who is such an inspiration and whose strength and courage has helped and enriched the lives of so many people.
Alexandra Dargie
Jenny
The symptoms that first took me to the doctor appeared in Spring '95. At that time I was full time teaching a class of 6-7 year olds in a busy infants' school. I put my increasing tiredness down to pressures of work and my age of 53. I had been on HRT for three years after a D and C prompted by heavy and irregular periods. However, I saw the doctor in May for an entirely different reason. One side of my face had become tingly and I had a permanent 'pins and needles' sensation there. The summer passed with no improvement. As we started the new school year in September I felt completely exhausted and had lost my appetite and therefore was losing weight. I wasn't sleeping well, waking every two or three hours to go to the loo and my face was still numb.
My doctor decided to do some nerve checks and in doing so remarked that I had 'quite a tum for a little person'. I'd been putting that down to the HRT! This prompted some gynae checks and I was referred to our local hospital for an ultrasound examination. Things moved quite quickly from then. My head teacher insisted that I stopped work, and two weeks later I went to the Princess Margaret Hospital, Swindon, for an extended hysterectomy. The operation went smoothly and I recovered very quickly, helped I am sure by the thoughts and prayers of so many family and friends. I left hospital after seven days and returned the following week to get the results of the histology. We coped with the news that cancer had been found in my ovaries and lymph nodes and we were told that I would need a course of chemotherapy followed by radiotherapy.
Once home we broke the news to our three children who are all in their twenties and married, though living fairly close to us, and we quoted the words of the surgeon who had said that he was 'pleased with the way the operation had gone'.
I felt that we were very much on our own with the news and wondered how on earth people cope without the support of family and friends in such a situation. My doctor knew of no support groups in the area and was able to produce a leaflet on ovarian cancer dated 1991, which wasn't much help.
My first chemotherapy session was six weeks after the operation and I was able to receive it on the day diagnostic unit of our local hospital which is ten miles away. I have been having Carboplatin by IV for about half an hour every month and am halfway through the six month course. The first treatment made me terribly sick, all night and well into the next day, but on subsequent treatments the drug Zofran has helped me greatly and I've not been so sick, though I find eating difficult for the first 4 or 5 days. I have been able to give in to the intense tiredness that I've felt for some time after the treatment, due to the constant help and support of Colin and my family and feel very lucky in that respect.
I think that one of the most difficult things about the illness is that you wonder whether every other ache or pain you have could be related. My face is still numb on one side, for no apparent reason, but they don't seem to think it is related to the cancer.
My greatest concern is that my daughter should be screened for the disease. My own mother died from cancer of the liver when I was 15. Cancer was not spoken about in those days but I know that the primary site of her cancer was gynaecological.
At present I feel well though I get very tired. A whole new chapter in my life seems to have opened and it has helped to be able to share it in some way with others who may be in a similar position.
Jenny, Chippenham
Write to Ovacome if you would like to share your experiences with others.
