Amanda is dedicated to raising awareness of the symptoms of ovarian cancer, worked tirelessly through Ovarian Cancer Awareness Month on social media. Her Thunderclap reached millions across the world. Here is her story.
I was diagnosed with ovarian cancer at 42. What kept me going back to my GP was a persistent cough. With hindsight I had some of the classic symptoms, but I assumed they were down to something else. It was very hot so I was drinking more, so it wasn’t surprising I needed to go to the loo more often. I was very tired but I’m always tired when I’m hot. My bowels were a bit funny but I’d just started a diet so I thought maybe I wasn’t getting enough fibre. Ovarian cancer didn’t even occur to me as a possibility – but that cough wouldn’t go away.
At first my GP thought it might be asthma so I got prescribed medication, but there was no change. The next theory was that it was being caused by acid reflux, but I reacted so badly to the drugs I was given for that that I needed to see the out of hours GP. He felt my tummy and said it was distended so the following Monday my regular doctor sent me off for an ultrasound, which picked up a large cyst.
I had an appointment a week later to see the consultant radiologist and in the meantime I had a CA125 blood test. The consultant thought it was just a large cyst so there was no urgency, especially as my CA125 blood test came back normal, but when I had an MRI scan two weeks later, the cyst had grown so much I was referred to the gynaecological oncologist.
At that point I started to go downhill very quickly. I needed surgery, but couldn’t have the operation as I was ill with a very bad infection. I was sent home with antibiotics but a week later I was still too ill for surgery and by now the mass was pressing on the main artery coming out of my leg. My CA125 blood tests were still normal and no one at that time thought it was anything other than an abnormally large cyst.
Eventually I had a firm date for the operation. By now the cyst was 26cm across and it had grown 10cm in the last month alone. While waiting for surgery I had developed a blood clot on my lung and a fluid pocket around my heart. My doctors weren’t sure I could tolerate surgery, so as I walked down to theatre I was saying my goodbyes – but it was successful. A sample of the tumour was sent off to pathology and the results showed I had clear cell ovarian cancer. It was eventually categorised as stage IIB – it had spread to the fallopian tube but was still contained within the pelvic area. The surgeon removed some lymph nodes too, and thankfully they were cancer-free.
I was on the high dependency unit for several days and a month later I started chemotherapy - six rounds of carboplatin and paclitaxel. During my treatment I stayed off the internet as much as possible and just kept to trusted sources of information like the Target Ovarian Cancer website and other cancer charities.
Coming to terms with challenges
My husband and I had been approved for adoption the week before I’d been diagnosed but it had to be put on hold. In some ways it made the treatment easier to deal with, as I’d already had to come to terms with not being able to give birth to a child. We won’t be allowed to adopt until I’ve been in remission for five years, but by that time I’ll be in my late 40s and I’m not sure if I’ll still want to go through the whole adoption process by then.
I’m now cancer-free but still living with all the challenges that treatment brings with it. I had to have a medically induced menopause and I’m not able to have HRT to alleviate the symptoms. I have lymphoedema in both legs and a hernia that can’t be repaired because of where it is. And I’m living with a constant “What if?” hanging over me – every ache and pain makes me wonder if the cancer has come back. I am working to turn a negative into a positive by helping raise awareness of ovarian cancer. I’ve had some real success online and especially on Twitter in the past few years, with support from celebrities and health professionals alike. I’m also a research advocate for Target Ovarian Cancer, to influence and promote ovarian cancer research.
Ovarian Cancer Awareness Month is a real high point in the year for raising awareness. Thank you to everyone who has helped spread the word about the symptoms of ovarian cancer this month. Here’s to the next one!
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