After finishing treatment for breast cancer, Carolyn could have been forgiven for thinking the hard part was over. But when she began experiencing tummy swelling, she was soon dealing with the shock of an ovarian cancer diagnosis. Here she talks about her experience, and why she believes it’s the simple kindnesses that make such a huge difference…
The first time I heard the phrase ‘ovarian cancer,’ I thought I was going to die. I’d just finished radiotherapy for breast cancer and now I was dealing with an ovarian cancer diagnosis. I was on my knees.
I first visited my GP just four days after finishing radiotherapy for breast cancer. At the time I was driving around 110 miles a day for breast cancer treatment. As well as being very tired, I also had some low tummy swelling, but I just thought it might have been irritable bowel syndrome (IBS). My GP seemed to think the problem might be bladder related – something I strongly disagreed with – and sent me for an ultrasound.
Initially they noticed fluid in my abdomen and they fitted me with catheters to help ease the swelling. However, when that failed to fix the problem, they referred me to a gynaecologist. It was at this point that I was told the scan had shown ‘something suspicious’, and that I was being sent back to the hospital where I’d recently finished having treatment for breast cancer. That was alarming.
While I was there in hospital, two junior doctors came to see me. They pulled the curtains around my bed, took my hands and told me that they were very sorry for my diagnosis. I got very upset. I was at such a low ebb – both physically and mentally – and this really spooked me. I thought it was incredibly insensitive.
Two weeks later I was admitted for optimal debulk surgery. They explained the operation to me but most of it went over my head. At this point ovarian cancer had still not been mentioned – only that I had a ‘suspicious cyst’ that needed further investigation. After the operation I received the diagnosis of stage IIIc ovarian cancer.
After the surgery I was very ill, and although the recovery was long and slow, the real battle was mental. The trauma of an ovarian cancer diagnosis just four months after a breast cancer diagnosis – it was a very low time for me.
I was referred to an oncologist and began the first of six cycles of chemotherapy. For the first time I felt I had hope. My oncologist understood me straight away and spoke to me as though I was an intelligent adult. After my first chemo cycle, when I was so ill with side effects they readmitted me, they also referred me to the oncology health department. They helped me come to terms with my diagnosis, and I was able to access telephone support and talking therapies, which was wonderful. People shouldn’t underestimate the effects of living with a cancer diagnosis. I cannot tell you how valuable this team support was to me. If your mind is in a better place, then so is your body.
Now I have follow ups every three months. Recently my CA125 level became raised, and I got sent back to the oncologist for a scan. Although I have some ascites, my oncologist has told me that having chemo early won’t extend survival. At the moment I have the swollen tummy symptoms, but no active cancer. It’s just a case of waiting on the results of my next scan.
I feel quite strongly about the fact that I can talk from an ovarian cancer and breast cancer perspective. Breast cancer is much more high profile – celebrities raising money, glamorous balls, doing races, even farmers using pink bailing! It’s all brilliant, but ovarian cancer hasn’t got that. I also think GPs need a better understanding of the warning signs. Ovarian cancer symptoms can be vague, so awareness among GPs and women is equally important. If I can help improve this, I will.
I want people to be aware of the emotional impact of ovarian cancer. Medical staff need to understand that the emotional toll of this disease is huge. Support can be anything from an extra five minutes with a doctor, to a stranger being kind in the supermarket. That type of support can completely change a person’s day. Most of the time I’m fine, but sometimes things feel a bit bleak – even with a loving husband, wonderful family and great friends. A small kindness can make someone’s day.
To all the ladies like me, I would say that the path might not be easy but it is doable. Hang in there and ask for help and support. Kindness from others goes a long way – believe me, I know! I was so scared and so upset when I found out I had ovarian cancer, but I got through it. If I can get through it, so can you!