After being told her cancer had recurred and was now classed as incurable, Jennie might have been forgiven for falling to pieces. Instead, with the help of Target Ovarian Cancer’s On Target newsletter – along with her own determination and positivity – Jennie decided to believe in the future and all of its possibilities…
I was in the waiting room after hearing the news about my recurrence and I happened to pick up a copy of On Target. There was a story in there about a woman who had reccurred many times. She was living her life, having fun, going on holiday, etc. Her story helped change my outlook. I was determined to make sure that ovarian cancer was just a detour in my life.
I was 51 when I first noticed that something wasn't quite right; I'd been suffering from bloating and was having pain in my side. Despite being quite an active person - yoga and running - suddenly I could no longer do some of the yoga moves and I was struggling to run without pain. In hindsight, I was also tired much of the time, and I had started to experience night sweats.
Because I had a complex gynaecological history, I'd always been quite good at getting myself checked regularly. I'd had ovarian cysts since my late 20s – along with fibroids and endometriosis – so when I went to see my GP and explained about my pain, I made sure to point out that I was probably at high-risk for ovarian cancer. Despite my concerns, he told me that my last scan was clear and that I probably just had a bladder infection.
When the test for a bladder infection showed up negative, the GP decided that I might be a coeliac and ordered another blood test. At this point I was frustrated, and had lost faith in the doctor. I also had a dear friend who had had ovarian cancer and as I got more bloated, she became more concerned. She knew all about the dangers of being misdiagnosed because it took doctors over 8 months to diagnose her.
Buoyed by my friend’s concern, I went to see another doctor for a second opinion. By now I couldn’t step off pavements without it hurting me, and I was exhausted all the time. This GP was also very hesitant about accepting that my symptoms were related to ovarian cancer, but I insisted and she sent me for a CA125 blood test. When the results came back as being over 5400, the GP was devastated. Luckily she was so nice and tried to get me scans as fast as possible.
I had extensive surgery; a full hysterectomy and partial colon removal. I spent 10 days in hospital and started chemo five weeks later. I recurred at my 12 month review and was told that I was incurable and had 1-3 years to live. I had another four months of chemotherapy – different drugs – but did not react well. After asking, I was given secondary surgery. I was only able to have this because of the type of ovarian cancer I had and the fact that my surgeon fought for me to have the operation. This was followed by preventative radiotherapy. That was the end of my first recurrence.
Believe in the future
I think the most difficult part was telling the people closest to me – that and the recurrence. Being told the cancer had come back was fairly brutal. But then I spoke to a woman at the clinic who had recurred 4-5 times. She was so determined to keep going that it made me want to pay it back and tell my story to other women.
I think my diagnosis has made me more determined, more focused and perhaps more selfish. I run my own business and when I was originally diagnosed I was in the process of buying a new shop which I delayed. When I was told that I might only have a year left, I had to make a decision. I decided to buy it and believe in a future.
Advice to others
Since my recurrence I’ve tried to keep track of the things I felt helped me. With that in mind, my advice to other women living with ovarian cancer would be:
- Ask the medics as many questions as you need to.
- Eat healthily – I gave up meat, dairy and sugar.
- Research everything – it might not work for everyone but it was essential for me.
- Exercise when and if you can.
- Meditate – I did yoga.
- Visualise yourself being well and doing things post treatment.
- Set up a Facebook or Whatsapp group to keep family and friends informed. I found it too exhausting to send individual messages.
- Be positive.
Lastly I just want to say that I think raising awareness of ovarian cancer is very, very important. I’m fed up with it being called the silent killer. We often all present with the same symptoms and get fobbed off with IBS or menopause. Without my friend, I may have been diagnosed far too late. My own GP told me that I looked too healthy!
- Find out more about dealing with incurable ovarian cancer
- Read more practical advice for living with ovarian cancer
- Support us so we can educate more GPs and achieve early diagnosis for more women
Three quarters of women with ovarian cancer say they do not get the support they need. Together we can make sure every woman receives the support she needs. Join the TAKE OVAR.