When Julia was diagnosed with primary peritoneal cancer in early 2013, she couldn’t help feeling like it was some kind of surreal joke. In her story, she reflects on the last few years, talks about living with cancer and why everybody deserves a third chance.
There’s something about being told you have cancer that’s just a little bit surreal.
It’s like looking down on yourself from a height. I kept expecting Jeremy Beadle to pop in for an episode of You’ve Been Framed! and I don’t think it really hit home until I was in the chemo suite.
‘I just knew’
I didn’t have the typical ovarian cancer symptoms.
In late 2012, I was experiencing some bowel symptoms and extreme upper abdominal pain. I was working in the NHS at the time and I thought it was probably stress related, but I went to my doctor anyway. I had a blood test on the Monday, and by the Tuesday morning I was told that my CA125 was about 2000. Just like that I knew it was ovarian cancer. I’d worked for years as a community nurse and I just knew.
I don’t think I felt too much – other than ‘oh dear’.
I’m quite a strong person, and I faced these kinds of issues every day at work – that probably helped me. On the other hand, I’d looked after many women who had died of ovarian cancer, and seen some going through difficult times. There was a small part of me that thought maybe that was going to happen for me. I struggled with that.
Trials and treatment
Initially, I was treated with 9 weeks of chemotherapy. It was actually ok – not that I had much of a choice! I knew I had to have the treatment, so there didn’t seem much point in worrying. I just decided to manage in the best way I could.
Unfortunately, when I went in for surgery they found the disease was much more extensive than they’d thought, and they couldn’t proceed with the operation.
They also told me that my ovaries were clear and that I had primary peritoneal cancer. Quality of life was paramount, and it was decided that it would be better for me to continue chemotherapy.
I had started a course of Avastin in August 2013 and chemotherapy ended in September 2013. CT scan in September 2013 showed no visible measurable disease – which was an unexpected but lovely surprise.
But by November 2015 the cancer had started to grow again, and I began a new round of chemotherapy. Unfortunately, this time the tumours didn’t respond as well to the chemo and I was classed now ‘platinum-resistant’.
That’s when my oncologist offered me the chance to take part in a clinical trial. The trial had three arms; I got the arm with a new drug and chemotherapy. I started in November 2016, and today, I’m pleased to say the disease is stable. I feel like I’ve been given a third chance.
I’ve been to two Target Ovarian Cancer support days, which were great. I met three other women there and we’re now close friends. We have our own little Facebook messenger group, and we get a great deal of support from each other. It’s a fine balance between getting the support you need, and not allowing ovarian cancer to overshadow everything. We have become friends and have done some lovely things together.
I know it can be hard for people to come to terms with a diagnosis, but I also know that I can’t change what’s happened to me. I’ve built myself a wonderful life now, after cancer and after retirement. We have a lovely holiday home on the Kent coast, I get support from my local church and I’ve tried alternative therapies and mindfulness. We even got a little dog. I try to live a normal life – just at a slightly slower pace.
I’ve had the odd tearful moment – there isn’t anyone who isn’t scared – but I don't find my diagnosis to be a massive burden. Sometimes I do worry that I won’t get to see my 3-year-old grandson go to school, but I’m seeing him this weekend, so I haven’t got time to worry about that now! And I have another grandchild due in April.
I let the specialist’s guide me with respect to my disease, so that I can make informed choices. I work hard to look after my mind and my heart so that I can enjoy the life that cancer has given me.