Amanda Barnes's story

Like many women, Amanda Barnes from Portsmouth thought her symptoms of ovarian cancer were actually menopause and that is despite her once being a gynae ward sister.

And so Amanda, a 49-year-old divisional head of nursing at Southampton Hospital, dismissed her symptoms, starting with extreme tiredness and feeling light headed, until she was eventually diagnosed with advanced stage 4 ovarian cancer with a lump in her breast and lung metastasis.

“I didn’t feel right, but I couldn’t really put my finger on what was wrong,” says Amanda. “Having a busy job in the NHS it was easy to blame how I was feeling on that,” she says.

Her GP did not pick up on the signs either and told her nine months prior to being diagnosed in October 2012 that she had nothing serious to worry about.

Gradually in the three months before diagnosis Amanda began to feel worse with a dragging pain in her abdomen, bloating and loss of appetite. Then two incidents made her realize that she needed further investigation.

“I was at a wedding party and I remember thinking that I had pulled a muscle in my abdomen and blamed the pain I felt on dancing in impossibly high heels. The pain went away, but a month later I went to another wedding, with the same dress, same heels and same dancing and the pain came back – only this time it didn’t go away.”

“I went to work as usual on that fateful day in October 2012, but I had to leave mid morning as the pain got substantially worse down the left-hand side of my abdomen. I drove the 25 miles back towards home and presented myself at my GP’s surgery hoping to make a late afternoon appointment. They took one look at my teary face and next minute I was sat with a GP and I knew that I was looking at something serious.”

“The words ‘mass’ and ‘cyst’ floated across my consciousness. I was asked which hospital would I prefer. Could I drive to the emergency department?”

“I remember the lovely registrar in the emergency department and the look on the face of the radiologist as the ultrasound scan passed over my abdomen. I remember them asking which consultant was on call and if the gynaecological registrar could come down. I remember thinking I’ve got cancer and I was right but it wasn’t confirmed until the next day.”

That was on a Friday and on that Sunday Amanda spent five hours in surgery, in which she was given a full hysterectomy. She was home five days later and five weeks after that she started a course of carboplatin and paclitaxel chemotherapy.

Six cycles of chemotherapy finished in March 2013 and five months later Amanda was back to work full-time.

Amanda faces more treatment, after a recent CT scan showed some changes, but she is living life to the full with her husband Rob while her condition remains stable. However, she remains shocked that something so potentially deadly could take hold in her body without her realizing.

“Since getting ovarian cancer I have been telling people at work, friends and family about the disease and I’ve been astounded at the lack of knowledge about it even with people in the medical profession,” says Amanda.

She is not dwelling on what has happened and during her chemotherapy-free year she has not stopped. She has finished her dissertation and graduated with a master’s degree in advanced clinical practice. She has travelled to Verona to watch opera in the open air, seen La Bohème at the Royal Albert Hall, been on the Queen Mary to drink champagne in the sunshine on her birthday and bought a renovation project of a house.

“I am enjoying choosing paint and bricks. Life is good – bracketed with three monthly checks that still make me worry and more CT scans than I would like but I also have a strong sense of purpose and a fabulous husband who is my soul mate and my rock. There is no way that I am ready for anything less than a fantastic life.

“Ovarian cancer hasn’t changed me, but it has made me acknowledge my spirituality and embrace my life. None of us know what tomorrow will bring and that’s just fine by me.”

For media enquiries please contact: cmackay@worldovariancancercoalition.