Metastatic breast cancer: ‘There is a part of me that is really angry and I have to accept that. I let myself feel what I feel’
For 45-year-old mother of two, Avril Tierney, being diagnosed with triple-negative breast cancer in 2019 was, she says, “horrendous.”
Those first few weeks, I felt like my world had been upended,” she says. “I had panic attacks for the first time in my life and felt utterly out of control. It took some time to gather myself but I woke one morning to a realisation that the one thing I could control was how I was in this situation. I could continue to panic, or I could refocus, stay present and just get on with whatever came my way.”
Avril, who lives in Laois, had previously trained as a counsellor and psychotherapist and had been seeing clients privately alongside her ‘day job’ working for Extern, a youth project in the Midlands. That training, and the understanding it brought her, has been invaluable.
She was put on a course of treatment that included chemotherapy, radiotherapy and a lumpectomy. After that initial treatment, a scan showed two cancerous nodules on her upper right lung. This was 2020, and the diagnosis was now metastatic breast cancer. The upper-right lobe was removed, following which she underwent another bout of chemo. A second CT scan showed further spread in the same lung. “Unfortunately,” she says, “this time it was treatable but not curable, so I now moved into a stage four diagnosis.”
That was two years ago, and since then, Avril has been receiving a combination of immunotherapy and chemotherapy, and has made a “conscious decision to live my life as normally as possible,” she says. “To adjust to the new change and move forward.”
She had stopped working after the initial diagnosis. ‘I was so overwhelmed, and so tired out by everything I was going through. But once I started into the treatment I’m on now — it wasn’t as hardcore in terms of side effects — I realised I needed to do something that used my brain and kept me busy.
“Extern have been amazing. Initially, it was very hard to go back — you’re stripped to your core by the experience of cancer. But I also knew that I felt better than I had done and that any small sense of normality was important. The feeling that I could find myself again in some way. And it’s been wonderful to be back.”
It is, she says, “hard to juggle the kids, home, work and treatment, but I manage.” Her daughters Tamsin and Tess are 11 and seven. How much has she told them? “Tess asked me only recently why did I keep going to hospital. She was only three when I was diagnosed, so she doesn’t remember a time without this.
“At first, I remember telling them that I had to take a special medicine and that I would look a bit different because of it. I was glad I’d prepared them for that because I was bald after two weeks. But they had no real concept, obviously, of what was happening, and we didn’t want them to. They were too young.
“This time, I have opted to use the cold cap, so I haven’t lost my hair. I think it helps them that I don’t look different. Now, I tell them that the cancer is in my lungs, and the hospital want to keep it there and make sure it doesn’t go anywhere else in my body, and that’s why I go back so much. I am careful to leave space for them to ask questions, and if I have a day where I am upset, I try to be open with them about how I feel. There’s a balance between telling them too much, and too little. But the truth is, I have to keep doing this — even on the days when they want me to be at home with them. I can’t ring in sick to the hospital,” she jokes wryly.
How much does she think her training in psychotherapy has helped in her approach to this? “I would have dismissed that at first, but now, I do think so. I learned to practise what I preached. I would have been telling clients to ‘stay present,’ and that has become my mantra. That’s how I live my life — not spiralling forwards or backwards.
“Being mindful and in the moment. It’s hard to do, it takes work — every day I have to work at it, and there are days when I don’t manage, but thanks to my training, it is part of my skill set, and I draw heavily on it. I have made a conscious decision not to get lost in this. Cancer is not who I am. I have kept my sights on that, and consciously try to be present in what I do.”
There are, Avril says, “days when I wake up and I don’t remember I have cancer. I have learned to compartmentalise. Sometimes, I get halfway through the day — more, even — before I remember.” But, she says, “there are other days that are bad, where I can’t help it, when I spiral and panic and have the worst thoughts. But that’s the deal — if you chose to be present, you have to accept the bad days with the good days. At first, I would refuse to accept them. I would tell myself ‘it’s OK, you’re OK.’ Until I realised that actually made me feel worse. Because the truth is, there is a part of me that’s really angry, and I have to accept that. Now, I let myself feel what I feel. If I feel bad, I tell myself ‘that’s OK. It’s not OK. This is a bad day, but it will get better.’”
In between treatment and scans – at the moment, her schedule means travelling up to St Vincent’s every two weeks, which is a positive step from the previous regime of once a week for three weeks, with one week off — she aims to forget about it all. “I could waste a week worrying about a scan I’ve had, but I try not to. I see the worry as a waste of time. It certainly doesn’t change the outcome, but not worrying makes a hugely positive difference to me and those around me.”
Her most recent scans have been very good, showing that the tumours reduced in size by half, and have remained stable. This means she is now on a six-monthly schedule of scans, rather than three months.
And yes, there is pressure sometimes to make herself responsible for other people’s upset and grief. “I understand that,” Avril says. “People are emotional. And they have the right to be. My family are devastated. My husband’s life has been damaged by this too. But, at the same time, this is not Eastenders; this is my life. It’s not a drama for someone else to live through. My family and friends are very good at remembering that.”
Somehow, Avril has found “an inner force” that keeps me going. “I have lost friends to this,” she says. “One woman who was diagnosed at the same time as me, and she is dead now. On paper, that should be me, and yet I’m here and I’m well. I am so grateful for that. And I choose to remember that feeling of gratitude.”
By the same token, she has moved away from the initial feelings of guilt — the feeling that ‘I’ve brought this horror into everyone’s lives’ — that will be familiar to so many who have had a cancer diagnosis. “I have grown to understand, ‘I didn’t do this. I didn’t want this.’ I don’t feel the guilt now. Mostly,” she says, “I feel really well. I get up every day, I walk the dog, I bring my kids to school, I enjoy these things and I feel grateful because it might not always be like this. People think you should be going sky-diving, or trekking to Peru, but my ‘bucket list’ is to take my kids to school, collect them, see my husband, go about my daily life.”
A metastatic diagnosis doesn’t mean life stops, Avril says. “Yes, it’s devastating at first but you can move forward and live a fulfilled life with hope for the future, especially with the advances of research into medications and targeted therapies. There are new trials, new drugs all the time. That gives great hope.” There is, she says, “a lot involved when living with cancer. But the keyword, for me, is ‘living’!”
In the lead-up to World Cancer Day on February 4, Breast Cancer Ireland has launched #MetastaticMatters, a campaign focussing on those living with a metastatic diagnosis. See breastcancerireland.com for more information.
What is metastatic breast cancer?
- Metastatic breast cancer, also known as Stage IV breast cancer, is cancer that has spread outside of the breast to other areas such as the bones, liver, lung or brain. This process is called metastasis.
- Breast cancer that spreads to the bones, lung, or liver is still breast cancer and does not become bone cancer, liver cancer or lung cancer. Under a microscope, the tumour cells will still look and act like breast cancer and will be treated as breast cancer. Metastatic breast cancer is treatable but no longer curable.
- Treatment is lifelong and focuses on preventing further spread of the disease and managing symptoms. The goal is for patients to live a good quality of life for as long as possible.
- Some people will have minimal or no symptoms of metastatic cancer. If symptoms are present, they’re based on the location of the metastasis.
Metastatic breast cancer red flags
After primary breast cancer, be aware of these red flags for secondary breast cancer:
- Lymph Nodes — swelling, lumps and pressure in the chest, armpit and neck areas. Dry cough.
- Lung — sharp pain on breathing in the chest and back area. Cough and/or fatigue. Blood clots can cause shortness of breath.
- Spinal Cord — pain or tenderness in the middle or top of the back. Severe pain in the lower back. Pain in the back that worsens at night, or when coughing or sneezing.
- Liver — bloating, appetite changes, weight loss, fatigue, weakness, or pain near the ribs on the right-hand side.
- Bone — any new, unusual or increasing pain in the bones eg arms, ribs, or back. Dull ache or sharp shooting pain.
- Frequent headaches, vomiting, dizziness, visual disturbances, seizures, mood swings, balance issues or fatigue.
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