ANNE Herlihy is getting busy living instead of getting busy dying.
“That’s my motto,” says Anne, who has stage 4 cancer which is incurable and inoperable, and who is one of two survivors on a maintenance drug, Orlaparib.
“The drug attacks the gene mutation,” explains Anne. “It gives you time.
“Five patients in Ireland were put on a clinical trial on a compassionate basis. I’m still here and living every day to the full.”
When Cancer invaded Anne’s life, she treated it as a bully.
“I decided I was doing it my way from start to finish; not cancer’s way.”
Anne’s cancer did not reveal itself at first. It masqueraded as minor ailments.
“When I initially went for a colonoscopy, suffering from bloating and fatigue, the results came back all clear,” she says.
The 54-year-old, from Charleville, had never heard of ovarian cancer. She never recognised the symptoms.
The disease, known as the ‘silent’ killer, crept up on her before she realised it.
“My son, Dean, was getting married in September 2014,” says Anne. “I was very ill with gastro-intestinal problems the night before his wedding. When I went to South Doc, nothing was detected.
“My symptoms, chronic tiredness, and dizziness, could be down to stress or to the menopause. Or IBS. Maybe I was being paranoid? But when I got so bloated that I couldn’t tie my coat, or walk from the school where I worked, the girls there noticed. Then, at the bus-stop; a lady said to me; you shouldn’t be standing so long. She thought I was pregnant! Then the alarm bells rang loud and clear.
“I went for a colonoscopy and the CA125 blood test which detected no cancer.
“When my GP decided on an ultrasound, the excess fluid had to be removed and analysed.”
It was the beginning of the revelation that Anne did not want to discover.
“The fluid, weighing two stone, was ascites; malignant fluid,” explains Anne.
“When the fluid travelled, so did the cancer, to the lungs, the ovaries, and to the peritoneum, which is the chest cavity housing the organs. I had cancer by proxy. My husband PJ and I were in total shock.”
A week from hell ensued.
“I was to attend the genealogical oncologist John Coulter,” says Anne. “I had a pet-scan before the appointment. The medic said that he wasn’t an oncologist, but that he was very worried about my results. He said the whole of the peritoneum lit up. I said; ‘my what?’ He replied, the sac in the abdomen. All your organs look like they are coloured in.”
Anne thought she was in a bad dream. She got advice from the nurse.
“On the way out, the nurse said to me; bring Christmas forward. And always say you had no regrets. PJ and I cried all the way home,” says Anne. “What was I fighting?”
She soon found out.
“Mr Coulter said I had stage 4 cancer,” says Anne. “Three out of 10 people survive for five years.”
Anne didn’t know how best to react to this news. How was she going to tell her sons, Dean and Aaron. Or her beloved grandchildren, Ava, Abbey, and Zach?
“I said to PJ on way home; will we take off our seat-belts and just go for the wall?” says Anne.
“There was no future for us. No happy ever after. I became the patient and PJ the carer.
“I used to make all the decisions. Now he had to. My son Dean was so shocked he was physically sick. Aaron was the practical one, googling and analysing.”
Anne was getting ready to fight with ‘the bully’.
The treatment started. Chemotherapy and radical surgery faced her.
“I remember sinking down in my chair when John Coulter gave me the bad news,” says Anne. “Then I sat up and said; bring it on. I’m ready.”
She was ready to tell her grandchildren about ‘the bully’. She gave it a name.
“They said, Nana doesn’t look the same any more. She has no hair. I told them about the cancer. I put them in the frame.”
Anne suffered sickness. Her nails became dry and brittle. Her bones hurt. But the fight was still in her. Anne’s dignity may have been assaulted, but it was never taken away unless she surrendered. That wasn’t an option.
“When Seamus O’Reilly told me that the cancer was inoperable and incurable after I had a scan and a CA125 blood test, and that the treatment would continue for 15 months, I was over the moon,” says Anne.
“My sister asked ‘why is that good news?’ I told her I could die in an operation or from an infection. And that now, I was going to live at least 15 months.”
Marymount had stepped in, offering palliative care.
“They were hitting the symptoms and that was grand,” says Anne.
Anne tackled the ‘to do’ list. Then the bucket list.
“I wasn’t going to lie back and do the ‘woe is me’,” she says.
“I made up a recipe book for PJ of basic meals that he could freeze and keep for a few days. Men don’t see net curtains getting discoloured, so I changed the curtains. I got timber floors put down and oak skirting boards instead of white ones. Things that made life easier.”
Anne showed ‘the bully’ that she meant business.
“I decided to ask PJ if he’d marry me again,” says Anne. “I used the cancer card. He said once was enough, but he agreed. I wanted the fairytale. We renewed our vows in Ballyseedy Castle in Tralee in June. All our family and friends were there. The rule was; no tears. Only fun, laughter, and love.”
Anne is surrounded by love. But the super-human effort it took to repel the bully that was trying to squeeze the life-force got to her once or twice.
“When PJ and I were out for a drive one day, I spotted a couple who had got married around the same time as us in 1981,” says Anne. “They were holding hands. They were making plans for their future. I cried and I cried and I cried. I said to PJ; what am I doing this for? I don’t care if I die. I felt so sick of the constant nausea, the insomnia, the constipation, the sweating, the awful fatigue; all the side effects from the treatment. It was the darkest day since my diagnosis.
“PJ stopped the car and he said to me; I want you to stay with me. I want you to stay for our children and for our grandchildren. That’s the plan.”
Anne stuck with it. She got busy living.
“I organised an Abba night in aid of Ovacare in Geary’s bar in Charleville last May,” says Anne. “We raised €2,510. I hope it will happen again this year. Everyone felt young and alive again. Women going through treatment for cancer forgot all about it for one night.”
Anne got her wish to sing her favourite song, Both Sides Now, on stage in the Late Late Show with Tommy Fleming last year. A driving lesson and a flying lesson were on the cards too.
“PJ and I enjoy every single day,” says Anne.
Her family treat her like mum.
“My son says; ‘Ah, mam is fine today. She can babysit.’”
She looks at life from both sides now.
“I see the world in a different light,” says Anne. “I saw a beautiful robin the other day. Before, I would have passed it by, not noticing it. I wake up in the morning in my own bed. And I think; this is brilliant. I can shower and pamper myself and I can dress myself. I don’t need any help,” says Anne.
“I fast for two hours before I take my medication. Then PJ and I decide what we’ll do for the day. We discuss what we’ll have for dinner. I can still peel the spuds!” says Anne, laughing.
“If it’s raining, we put on the rain gear and head to Doneraile Park for a walk. It is wonderful to be with the person you love,” says Anne. “You don’t need money for that.
“We may go further, to Inch beach in Dingle, and we often decide to get a bit of sun and fly to Spain for a few days. We go to a 5-star hotel, even though PJ doesn’t like poshness! My travel insurance is more expensive than the holiday because I am terminally ill.”
Anne wants the bully to get its come-uppance. She is keen to raise awareness about ovarian cancer.
“Be aware of your own body,” she advises women “It is the best tool that you have. If you feel something is not right; act on it. Approach your GP with confidence. New Guidelines issued by the national Cancer programme, (NCCP), and the HSE, seek to bring GPs through a recommended pathway to care for symptomatic women. That will help people waiting for necessary scans.”
PJ is waiting patiently for his wife.
“We are going for a walk before we go to the Opera House later,” says Anne.
The couple find each other and they both head off into the sunshine. The bully is left behind. Something’s lost and something’s gained. Anne looks at life that way.
Ovarian cancer is the fourth most common cancer in women in Ireland. Each year, 350 Irish women are diagnosed with it. More and more women in their 30s and 40s account for cases.
CA125 is a chemical found in blood that is sometimes released from cancer cells. It is known as a tumour marker, but not all women have a raised CA125. A smear test will not detect ovarian cancer. Women need to be aware of frequent symptoms; bloating, swollen abdomen, loss of appetite, digestive disorders. If they persist, see your GP.
For support see ovacare.ie