Why Larne mum Carol won't rest until every woman in Northern Ireland knows the signs of ovarian cancer
Mum-of-two Carol Bareham underwent gruelling chemotherapy after she was diagnosed with the disease, only for it to return. As Ovarian Cancer Awareness Month continues, she tells Leona O’Neill why she is determined to raise awareness of the symptoms.
Some 200 women are diagnosed with ovarian cancer in Northern Ireland every year, something that Larne mum-of-two Carol Bareham knows all too well. Diagnosed in 2015 with the disease, she underwent gruelling chemotherapy and had her womb and ovaries removed, only to be told that the cancer had spread and was now incurable.
Now, during Ovarian Cancer Awareness Month, Carol (46) - who lives in Larne with her husband Neil and children Thea (16) and Elliot (14) - says she won't rest until every woman in Northern Ireland knows the signs and symptoms of the deadly disease, so that no other family has to go through what her's has.
"I started getting symptoms in July 2015," she says. "I was on a family holiday in Egypt and I noticed when I was wearing my bikini that I was swollen and bloated.
I found that I went off my food on holiday and by the time I came home I had lost considerable weight.
"My appetite had gone, I was bloated and I was urinating a lot more and my bowels had started playing up. I had all the symptoms but because I had been to Egypt I thought that I had got some really bad bacterial bug.
"So I got home and made an appointment with my doctor after the symptoms didn't ease after a few days.
"They did a few tests to rule out a bacterial bug. My periods were regular and there was no abnormal bleeding.
"Looking back now, I can say that I had a little more pain when I ovulated and when I had my period. But I had no abdominal pain.
"I went back a second time to the doctor and I still thank my lucky stars to this day that it was a young GP who had just started in my practice that week. He got me up on the examination table and felt a lump that I had no idea that I had."
She adds: "He didn't say anything, he just asked me questions. He told me he wanted to know what was going on and sent me for an ultrasound and more blood tests.
"I got the ultrasound a few weeks later and within hours I had a CT scan at Antrim Hospital. I still didn't think that anyone was thinking about cancer. It's not that I didn't expect to get cancer, but at 42 years old, when your life is cruising along quite happily you don't expect these great big shockers to enter your life.
"On September 7, I went back to the young GP after having all the tests and scans done and he was able to put everything together and told me that I had ovarian cancer."
Carol says the bottom fell out of her world and her first thoughts were for her family.
"My world just ceased to exist from that moment on," she says. "Those words just felt like a hard, swift kick in the gut. The wind was taken from me. I couldn't breathe.
"My first thoughts weren't actually of myself, but of my family, because it was going to devastate them. Elliot had just started secondary school a week previously and my daughter was in third year at the time. It was horrible. I just remember getting out to the car and crying, thinking how I could possibly go home and tell them this. And then I thought, I could die in a car accident going home, so I just drove back home.
"It is still imprinted on my brain, opening the front door, coming in, giving Neil a look and then just looking at the kids who were engrossed in some online games."
Carol continues: "I went out to the kitchen with Neil and had a quick word and a hug and a cry. I took a deep breath and we both went in and told the kids. We all just sat and cried and hugged. It was really, really tough. But I'm still here over three years later."
After going through gruelling treatment, surgery and thinking that she was in the clear, 10 months after being first diagnosed Carol was diagnosed with secondary cancer.
"By the time I was diagnosed I did look heavily pregnant - my stomach was solid and firm," she says. "I started my first line of chemotherapy in October 2015 and I had a full abdominal hysterectomy in January 2016 and had two more rounds of chemotherapy. After that I got used to a new normal and got involved in the Target Ovarian group.
"I got my life back, but then 10 months later I found out that the cancer had recurred," she says.
"Because the ovaries are buried so deep inside your pelvis, it is quite a hard tumour to locate.
"You might not know for a long time that it's there and it has time to grow and spread. The cancer had spread to my peritoneum, which is a packing tissue around the abdomen, and I also had cancer in a lymph node in my pelvis.
"I feel like my body is just the battleground and it's the chemotherapy that I'm on that is fighting the cancer. I had another round of chemo in 2017 which stabilised the cancer and I started another round in November, which I'm still doing. It is tough old days.
"My cancer is incurable. All the chemotherapies do for me is keep the cancer stable and hopefully keep it at bay."
Carol says she speaks up now to take people on her journey, to educate them and raise awareness, but also uses dark humour so that other cancer sufferers can relate to her story.
"I won't be happy, I won't rest until I know that every woman in Northern Ireland knows the signs and symptoms of ovarian cancer," she says.
"The longer I have been involved in raising awareness, the more horror stories I hear. A big bottleneck is getting past your GP.
"I am not disrespecting GPs, but they are general practitioners, they don't see a lot of cases of ovarian cancer. Target Ovarian are trying to train the GPs to spot ovarian cancer. But it is up to us women who are living with this horrific disease to do what we can to warn other women. If something I have said helps one woman go to her GP and push for the ultrasound and the specific blood tests, that is great.
"Right now over 200 women a year are diagnosed in Northern Ireland with ovarian cancer. Most of them are like me - the cancer has already spread, it is treatable, but it's not curable. I don't want any other families going through what my family has been through. I have lost some very close and dear friends to this disease, because obviously I've got very close within our support group. I want more women diagnosed at that early stage, at stage one rather than stage three and four."
Carol adds: "I do a regular blog, thinking it would be an extra step I could take with raising awareness, not just about ovarian cancer, but what it's actually like living with cancer. I said in one of my blogs that my experience of cancer, up until I was diagnosed with it, was that you were either killed by it or you were cured of it. I didn't know that you could have an incurable but treatable disease like I have.
"I am doing it for awareness but also because I know that there are a lot of women in the UK and beyond who read it, who have ovarian cancer themselves, and it strikes a chord with them. I do try to inject as much humour into it as I can. It's usually dark humour, it's usually talking about my bowel habits. It all lightens the mood as well as educating and supporting."
Carol says living with cancer is not easy, but she has adopted a motto to get her through.
"You just carry on," she says. "You learn to live with it. When I was told the cancer had come back I was floored again. It was actually worse than getting diagnosed the first time.
"When you are diagnosed you hope for a cure. But when it came back, nobody needed to spell out to me that it was now incurable, and that I would never get rid of this disease.
"I did hit the doldrums when I heard that and it took me a few days of being very quiet, which isn't like me, to get my head around it all. And then I came up with a phrase that I live with to this day and that is 'why worry about dying when I'm still living?'"
For more information on ovarian cancer, please log on to www.targetovariancancer.org.uk
Ovarian cancer: signs to look out for
- Bloating in the stomach
- Always feeling full
- Going to the toilet to urinate more frequently and urgently
- Bowel habit change
- Aches and pains in pelvic area