News & stories Personal stories Wendy I had been going back and forth to the GP with symptoms for a couple of years. These symptoms were, in my case: extreme tiredness and exhaustion, feeling faint, extremely heavy periods, pain when having sex, and a dragging pain in my ovary region. Then, later on, I had numbness in my little fingers, increased frequency of migraines, urgency to empty my bowels almost immediately after eating, and a slightly bloated stomach. My GP told me, at various times, that it was the onset of the menopause, that it was stress from my job (I was a head teacher), that it was anaemia (I had three courses of iron pills), that it could be IBS or diverticulitis, and that it was TATT (exhaustion). I was eventually referred for a scan due to the extreme periods making it difficult to do my job. I had tampons and ultra-heavy duty night time pads on all the time and they needed changing every hour or so, so I always wore black trousers! The GP suspected fibroids. I went, in the space of two weeks, for an ultrasound scan, another more powerful ultasound scan, a trans-vaginal scan, a consultant radiologist appointment, and a consultant gynaecologist appointment. My CA125 was 545. I was in for surgery within three weeks. I had a total radical hysterectomy and the surgeon told me: "I had a good old rummage around inside and I think I’ve got it all". He was old-school and very experienced but with a fairly blunt manner. I owe him so much. At my six week check-up, I was told it was all borderline, very slow growing and that I didn’t need any chemo or radiotherapy. They had found traces of ovarian cancer in both ovaries and the omentum, but I wasn’t told which stage I was, apart from borderline. I was monitored monthly, then three-monthly, then six-monthly then yearly and was discharged from the hospital after five years. I was a bit anxious at this stage as I’d come to rely on my CA125 checks as a reassurance. However the CNS told me that I could have a CA125 whenever I wanted. She gave me a blood test form and was very reassuring. I had become close to her during my treatment and check-ups and when she set up a support group, COPES, I went to speak to the ladies there. I had Hormone Replacement Therapy (HRT) implants for 18 months after my surgery to help with the recovery and the effects of the menopause. Interestingly, while I had these implants, which had an element of testosterone, I had no migraines whatsoever. I’d had four to five migraines a month from about the age of 10. I was in hospital for five days and recovered well. I had about four months off work. My husband and wider family were amazingly supportive, as were my friends. My husband, Clive, bore the brunt of dealing with the fact that I’d had a cancer diagnosis, by letting my family and friends know. I hadn’t said anything to anyone, even him at first, about how strange I was feeling. He spent the first few days of my diagnosis on the phone to a wide circle of family and friends. He visited every day as well as dealing with his job as a deputy head in a large secondary school. He was amazing. Always so reassuring, always saying "We’ll get through this", always telling me I was looking better. My elderly parents visited and stayed at home with my husband, as they lived about a two hour drive away. They found it difficult to believe what was happening. When I came home from hospital Clive took over the cooking (a first for him) and became so concerned that I should follow all the plans from the hospital to aid my recovery. We had always been very close, through infertility investigations and coming to terms with not having children, supporting each other through visiting ageing parents who lived far away and through difficult times in our work. It was Christmas soon after I came home and my first trip out was to Waitrose to stock up for Christmas dinner. My sister got married during that time, so I was very sad to be missing her wedding, but I had to have a lot of rest. We started to go for a short walk every day about a week after I came home, maybe 2 weeks post-op, and I took up swimming daily after about 6 weeks, I think. I had put on quite a lot of weight after a thoroughly indulgent Christmas with lots of rest and little activity. During that time I decided to resign from my head teacher role and do some educational consultancy work. I eventually went back into teaching because I missed working with children and retired when I was 58. I am convinced that the stress of my job and the (usually) 70+ hour working week had a negative effect on my immune system. I had already volunteered with Ovacome. When I retired I was keen to support other women who were going through a similar diagnosis. I was so lucky having had the skill of my surgeon and the team at the hospital and the fact that my cancer hadn’t gone too far or become too aggressive. Since my retirement, I’ve done quite a few talks to local women’s groups and a mixed health group linked to a local council, all about recognising the signs and symptoms of ovarian and other gynaecological cancers. I’ve represented women with ovarian cancer on the APPG (All Party Parliamentary Groups) in Westminster and done what I felt appropriate to support women online on the HealthUnlocked forum. I’ve also become chair of our local gynae cancer support group, working with the CNS who helped me so much in the early days, who is now a lead nurse in cancer care for three local hospitals. The group is called COPES and is run by women who have had gynae cancers, alongside the CNS' and consultants (www.copescharity.co.uk). I think that the set-up there is unique, in that there’s a monthly Coffee Morning meeting, always with informal CNS support for those "wobbly" moments, and we have volunteer therapists who give free massages and Reiki. We have lots of fun events and have helped organise Survivorship Days and Health and Wellbeing Days. The team at the hospital are very much focused on wellbeing. I have met so many wonderful women through the ovarian cancer network. Some of them are sadly no longer with us. I’m still in touch with many of these wonderful women and their daughters, in cases where they’ve passed away. We always say: "we must do what we can to raise awareness and support others. It has been such a rewarding thing to do". I always recommend Ovacome on these occasions, as it was the first support I got, back in December 2002, and the materials and support provided by Ovacome are extremely helpful and reliable. I never forget how lucky I am, to have had wonderful support from my family, my friends, the NHS, Ovacome and other cancer charities I’ve volunteered with. Also from the great band of friends I’ve made while speaking to various groups and online forums. . Update from Wendy in February 2021 about the COPES gynae support group: Since COVID has affected our support work we’ve recruited 9 new members. We can’t do any face to face meetings of course but have kept in touch with our members in the following ways:- Email and post (monthly newsletters), phone for members who don’t have internet access, text messages, Facebook, Twitter, Zoom (monthly for members, more often for committee members). Sadly, our committee has attended three funerals. No one who’s asked for support has been left feeling alone. Some members have found us after being told of our support by the CNS team, others have found us via our website or Facebook. We’re planning a huge get-together reunion when circumstances allow!