Life after an incurable cancer diagnosis
How Aine found strength through our Positive Living group
Aine is a mother, wife and friend, who for the last four years has been living with metastatic breast cancer. Despite her diagnosis, Aine is feeling healthy and well and is feeling more positive about her future. She wants everyone to know about the reality of living life with advanced cancer, and why it’s okay to seek support
In February 2017, a few weeks before her daughter’s wedding, Aine felt a slight pinch in her left breast while reaching up to organise a shelf. When she felt the area with her hand she could feel a small lump. It was in the same area she had previously had a cyst drained so she wasn't too concerned. “I’d had two cysts drained from my breast before, so I wasn’t too worried. I decided I would watch and wait before I spoke to anyone about it,” she says.
Eventually, Aine went to see her GP. After undergoing tests, she was diagnosed with stage two breast cancer. Surgery was scheduled to take place and I was then to have 6 weeks radiotherapy. Everything was happening quickly “I was happy to get treatment straight away so I could get back to my life,” she says. However, some routine scans showed Aine’s cancer had spread. She was then diagnosed with stage four incurable cancer. The surgery and radiotherapy were cancelled and she was referred to Medical Oncology for a new treatment plan. "Suddenly the Get out of Jail card had vanished and what I thought would be a 6 month sentence was now Life on treatment".
It took a long time for Aine to get her head around her new diagnosis. It's like having an outer body experience. “I felt like my life had been taken over by this huge monster. I knew my Oncology Team were medically taking good care of me but my mental health was suffering and yet no one asked me how I was coping. Stage four cancer made me think about death, and that terrified me,” she says. Feeling like she needed to be a pillar of support for her loved ones, Aine pushed her worries and anxieties aside. She “made herself cope”.
When Aine’s cancer was thought to be stage two, she was getting calls from nurses every two or three days about appts, scans, results and she felt very involved but once it was upgraded to metastatic, she experienced radio silence. I had to wait approx 6 weeks to be referred from the breast clinic to Medical Oncology. It was during this period I felt the most isolation and fear. "I had no idea how I was going to live with this and indeed how long I had left. I had never met anyone with metastatic cancer and so I didn’t know that the worry, fear and anxiety I was feeling was normal. I don't remember if I was was ever told about any resources or outlets for me to share what I was feeling.”
Aine struggled for a year with her cancer diagnosis alone. She became so desperate to link in with others with a similar diagnosis that she called several charities before coming across the Positive Living Group run by the Marie Keating Foundation. I spoke with Helen and she explained the group was specifically for people with Metaststic Breast Cancer. I felt such relief and for the first time since my diagnosis I felt understood.
“I spoke to Helen in August and she encouraged me to attend the Marie Keating Foundation, Survive and Thrive Fashion Show which was happening in September. She said it was a really nice event and it would be a great opportunity for me to meet some of the girls who attend the Positive Living support group.
I attended with my Daughter. When I went into the room there was an air of such happiness and joy. Smiles on people's faces, flashing lights and laughter. I thought "this is what I'm looking for. I am tired feeling sad." “Yeah I have cancer I need the support but I also need something nice going on in my life as well.”
After that experience and meeting some of the team and the group’s members, Aine joined our Positive Living group, which offers peer-to-peer support for women living with advanced breast cancer. “Being able to see women living well with metastatic cancer opened my eyes – I wasn’t alone anymore. I felt I could breathe again, that I had the support network I was craving. The strength you get from other people, and what you learn from them, prepares you for what may come in the future.”
“What I really want people to know about metastatic cancer is that it’s not always ‘terminal’. Our cancer is incurable, but you can still live a happy, healthy and God willing, long life with stage four cancer.”