From early on in her pregnancy, Anne Nally-Keenan knew something was wrong. "It was very turbulent, I was haemorrhaging weekly," she says now. "But every time we thought something was wrong, we got the green light, were told 'you're fine, you're being an over-reactive first-time parent. Enjoy your pregnancy'."
At week 29, Anne, then herself aged 29, was diagnosed with stage 1, B2 cervical cancer. "So all my concerns just weren't listened to. I had a seven-centimetre tumour."
Because of her pregnancy, the tumour was growing rapidly. "I don't think words could describe how upset we were. The main thing was 'is our baby going to be OK?'" Anne and her husband, Jonathan, were told they would not be able to have more children. "That knocked us more than anything else at the time," Anne recalls now.
Their son Colin, now eight, was delivered by Caesarean at 33 weeks. He had breathing difficulties, and was taken to intensive care, remaining in NICU for roughly five weeks. Anne's tumour was inoperable. "All they could do at the time was close me up. I had to wait for weeks knowing that I had this tumour still inside me."
It was terrifying, she says now.
"When you're told 'there's nothing we can do at this time,' you automatically think the worst. I've a very good, strong husband, and he was there for me every step of the way, assuring me that everything was going to be OK. But I was an emotional mess. Not knowing 'Is my baby OK? Am I OK?'"
There were a few blissful weeks at home with Colin, before preparation began for Anne's treatment; she was to undergo chemotherapy and radiotherapy, leaving Colin and Jonathan at home in Westmeath, while she lived during the week, for three months, in St Luke's Hospital, Dublin. Leaving her tiny baby for five days a week was, she says, "excruciatingly painful".
After the initial treatment, Anne underwent brachytherapy (a type of internal radiation).
"When I completed that, I finally got home. That was when I started to bond with Colin, and have some time with him. Little did I know that the reality of life after cancer was about to kick in."
Anne had been diagnosed in March of 2012, returning home after treatment in September. "I noticed in January 2013 that something wasn't quite right. Colin was diagnosed with cerebral palsy, more than likely from the early birth."
At the same time, Anne began experiencing a number of post treatment symptoms.
"There was a huge amount to figure out, and the only thing I could do was take it a week at a time. I was at home, very much on my own. Everyone was brilliant during treatment, but once you're so called finished, that's the end of the support. People don't understand that that's really when you need the support."
"When I did try and go to support centres, there were a lot of older people. I was a young mother, I was experiencing a lot of post-cancer treatment symptoms that they just didn't understand."
Anne's symptoms included early-onset menopause, which meant hot flushes, poor sleep, mood swings, irritability and extreme fatigue. She also suffered mild depression, lymphoedema, was hospitalised for a month after an infection, and experienced back issues due to radiation, which resulted in the need for spinal surgery. Most recently, Anne has developed endometriosis, undergoing two operations during lockdown.
"There were an awful lot of post-cancer issues that I was unaware could even happen," she explains. "At the time I only had my GP to speak to. I had the cancer care nurse in Dublin, but there was no other service where you could speak to someone about all these symptoms. Instead you had to go back through the process of getting in touch with your team in Dublin. I was aware that they were under pressure, because they have a lot of new cancer patients coming in as well. It was very, very stressful."
Unfortunately Anne is left with lifelong issues. "I'm in year seven of recovery, and it's consistently an issue with different things."
All of this has, understandably, taken its toll on Anne's marriage. "This put our life on hold. We would have been very energetic, outgoing, into activities. That all had to end because of my tiredness. We did stop communicating for a while, I felt because we just didn't understand each other." The couple attended a therapist. "The whole experience made us stronger. Jonathan is a very strong, understanding man. He has been by my side every step."
After her back surgery in 2015, Anne thought that the end of a tough road had been reached. "We started really accepting the life changes that we had to, and making the best of a bad situation. It took us a long time to accept that we cannot give Colin a sibling."
Then in 2019, Anne was informed that she was one of the group of women who had been given incorrect results from a smear test.
"I was just coming to terms with everything, and we were starting to put things on track, when we found out I was one of the ladies who was misdiagnosed, and I would have had a very, very high chance of my cancer being prevented. That really put us in a whole new spin again."
Anne is a member of two support groups, the 221+ patient support group (established for women and families directly affected by failures in the CervicalCheck Screening Programme) and another run by the Irish Society of Gynaecological Oncology.
"I spoke to so many women who I could relate to. They had the same experiences as me. It made me feel not alone. That these are real symptoms, not just in my head."
What women need, she says, is a medical professional who will listen when she says something is wrong with her body. "Women know their bodies. They just need to be listened to."
Now, a new initiative by the Irish Cancer Society, the Women's Health Initiative, is aiming to bridge the gap in treating cancer survivors' post-treatment symptoms, with two pilot clinics in Cork and Dublin. "The new initiative will have a huge impact for women. They will get to ask the questions that may seem slightly silly at the time. And not Google, and try and figure out yourself."
Having everything channelled through one clinic which can then guide a woman to the correct help is a key change, Anne reflects, explaining that it can be overwhelming, trying to link in with the correct service, and that there can be a stigma around some of the after effects of treatment for cervical cancer which can prevent women from speaking to their GP.
"I don't think I'll ever be OK with the massive mistake that was made," says Anne, who is now the official carer for her eight-year-old son. "Lives change dramatically from cervical cancer. There are days when you get very angry, but I do like to think on the positive. Week by week; what will we plan? I still am a mum raising a young boy, so we still have to reach for the good."
Professor Roisin Connolly, Consultant Medical Oncologist, Cork University Hospital and UCC, is the lead investigator of this project.
"There can be quite significant side effects in the months and even years after the treatment," she explains. The clinic is going to encompass certain cohorts of patients with earlier stages of cervical, endometrial, and breast cancer. "Each patient is very individual. You can never really tell until a person's had the treatment how they're going to be impacted. Having the services in place to manage the different spectrums of symptoms experienced is necessary."
She lists some of the symptoms patients can experience in the aftermath of treatment. "The radiation, in conjunction with the surgery, can have quite a significant impact on the bowels, and also on the urinary system. Patients can have appetite issues and tiredness."
Many of the symptoms are not necessarily dangerous, but they impact on a person's life on a day-to-day basis. Identifying, and then managing them, is crucial. "The issue of sexual dysfunction is not something that people always want to talk about but is really quite common. They can experience discomfort during sexual intercourse. It can have an impact on women's libido, their personal self-esteem."
Research and feedback from support groups has highlighted that the issue of sexual dysfunction is quite significant, but women may not always feel comfortable bringing it up with their team. "When women realise that it's not just them, they're almost relieved," Professor Connolly reflects.
Soon after completion of their treatment course, certain patients will be considered for the clinic based on their needs. They will then have intensive monitoring and managing of their symptoms after their treatment.
"We want to make sure that patients call if they are feeling unwell. Our hope with this clinic is that we will give more power to the patients."
A nurse-led clinic, the two centres will aim to provide a holistic approach, also focusing on symptoms like the fear and anxiety that many women experience in the aftermath of treatment. "This is a collaboration between the medical field and the nursing field. We're collaborating with Professor Josephine Hegarty of the UCC school of nursing."
"I think sometimes women feel like they're let out into the world with no support," Professor Connolly adds. "And suddenly there's nothing until the three-month appointment. They have to go back and be normal again, because everyone's like 'she's finished her treatment and now she's fine'. This can be the time when the worry starts."
For more information on the Women's Health Initiative, see cancer.ie. Women who require supportshould contact the Irish Cancer Society Support line on freephone 1800 200 700 or email@example.com
Health & Living
The small group of swimmers stood in the pale light of morning waiting to disrobe. Like a tribal elder, the man they'd been waiting for joined them on the beach. A round of applause and cheers greeted his arrival. It was good to have him back.