Everyone’s ovarian cancer story is individual. Like most women who have been diagnosed, parts of my story are unique to me, whilst other bits are things we can all relate to.
The first time I realised that something was wrong was when I started experiencing nipping pains in my pelvis and thought it was due to an IUS (coil) I’d had fitted four years earlier. I made an appointment with my GP and explained that I needed the IUS removed because I thought it must have embedded itself in the wall of my uterus.
It was uncomfortable having it removed, and the doctor at the sexual health clinic said if the pains did not resolve I should return to my GP. I soon noticed a hard lump in my abdomen and pelvis, and my husband could feel it too, so I knew it wasn’t just me being a bit neurotic. I went back to my GP and asked for further investigation and mentioned I would like a CA125 blood test and an ultrasound. I work as a healthcare professional, which helped in some ways and hindered in others.
The ultrasound revealed that I had an ovarian cyst with solid deposits, and it started to dawn on me that I might have ovarian cancer. As my husband and I walked along the hospital corridor, I told him I thought this was something serious and likely to be cancer. We then discussed how to let our family know. Because I knew best practice in breaking bad news, my family often thought I was coping fantastically well – which wasn’t always the case. People would tell me how well I was doing rather than asking me how I was, which was difficult.
Target Ovarian Cancer
The interim period when I thought I had cancer was probably the worst part. The wait was pure torture and was so frustrating. This was when I really appreciated Target Ovarian Cancer. I read the information on the website and knowing that others were dealing with a similar experience was my main coping strategy. It was the only way I felt I could take some power back. My role, and to some extent my identity, completely shifted from being a care giver to being a care recipient. I had no control over when I would be seen or where my operation would be. I was in control of so little that I just wanted to soak up all the guidance.
The op went relatively well, but the thing I struggled most with is something that is often made to sound so trivial: trapped wind. Because everything slowed down, I couldn’t settle. Now I can identify with babies who cry due to colic!
My husband stayed in a hotel nearby so he could visit me whilst I was in hospital. One day he complained about how awful it was staying in this hotel. I’d just had major surgery, I was on a drip and hadn’t eaten or slept for four days. I gave him a look that only a woman on a drip following post-surgical vomiting could give. He didn’t whine again!
I got the pathology lab report back and from that point on, it felt like pantomime moments seemed to punctuate my ovarian cancer story. The results indicated that it was clear cell ovarian cancer (boo!) but that it was stage I (hooray!).
This is a rare type of ovarian cancer, and only affects about four per cent of women with ovarian cancer. Due to its low rate of incidences there have been few trials specifically looking at the best treatments for ovarian clear cell carcinomas. In the end, I plumped for the chemotherapy. There was no evidence to show that chemo and surgery would improve my outcome when compared to surgery alone, but I wanted to know I had done everything I could to treat this disease. If the cancer returned I wanted to be able to say I had done everything possible.
There were many other ‘boo’ moments – especially on chemo. I was very tired but I learned to listen to my body, and I never felt guilty when I needed a duvet day. There was plenty of trash on daytime TV, which matched my intellectual capacity at the time!
One thing that did take me by surprise was how I lost confidence doing tasks like shopping. I didn’t like going to the supermarket alone because I felt like people were giving me second looks.
I went back to work on a phased return six months later. Once you have faced cancer your perspective on life changes. I personally haven’t adopted a healthier lifestyle since my diagnosis, but I beat myself up about things a lot less. It can also be surprising when you find out that some of the people you thought you were close to can’t deal with things, or that they can no longer be relied upon (boo!) But you also find out what really matters to you, and for me, that was the biggest ‘hooray’ of the entire experience.