'Staring down the barrel of stage four cancer is not easy'

We expect doctors to find a cure for all ills, but with terminal cancer, the focus often switches to management of the condition. This is where support networks are vital 
'Staring down the barrel of stage four cancer is not easy'

Aine Murphy is living with metastatic breast cancer. Picture: Shane O'Neill 

BEING told you have cancer is undoubtedly one of the scariest experiences you’ll ever have. But while survival rates are improving all the time, some people have a type of cancer which cannot be cured, and they must learn to simply live with it.

Thankfully, many will be on a management programme which allows them to live a relatively normal life for as long as possible.

But having a terminal illness can take its toll on physical and mental health as Marie Carroll has found.

Despite being fit and healthy, the 61-year-old, who was an international clinical physician recruiter, found a lump on her breast in 2005 and initially both she and her GP assumed it would be benign. But this wasn’t the case and after the initial shock, she underwent two operations, one to remove the lump and another to remove the nodes and area around the tumour.

After months of chemotherapy and radiotherapy, she presumed that was the end of it, but over 10 years later, she began to feel ill again.

“In 2017 I began losing energy and had a nagging pain in my right hip, so I spoke to the physio in my local gym who told me to go immediately for an MRI,” says the Dublin woman.

“I underwent a colonoscopy which returned clear but then the MRI revealed a tumour on my hip, several along my spine as far as my neck as well as some spots in the lung and spleen. 

I was diagnosed with metastatic breast cancer (MBC) and was admitted to the hospital immediately where I spent several months, lost 10kg in weight and had to learn to walk again.

Since this devastating diagnosis, Marie had further radiotherapy last year and discovered that the cancer has also spread to her liver.

“I never considered that breast cancer would return,” she says. “The treatment and side effects completely consume my life and dictate everything. But my two daughters are amazing. They are completely with me, fully engaged in everything and I’m so lucky to have their support. Honestly, I wouldn’t be here without them.

“But staring down the barrel of stage four cancer is not easy — there is an isolating aspect to it. We don’t have actual current statistics on survival rates for MBC patients — so it’s unknown territory. The drugs we’re using are also new, so it’s very much trial and error. You learn to work in close proximity with your oncology team who are a lifeline. But emotional support is something they are not expected to do which is why it’s so important to seek that elsewhere.”

SUPPORT GROUP

Marie Carroll.
Marie Carroll.

This is why Marie joined a group specifically to help her deal with the emotional fallout of living with a terminal illness.

“Until this year I had never met anyone with MBC, but I found the Marie Keating Positive Living Group,” she says. “It’s just for patients with MBC. We meet once a month and there are several support activities for families of patients throughout the year. We also have a WhatsApp group which is great for sharing thoughts, ideas, and information and this is particularly relevant in the current Covid-19 conversation.

“It’s really nice to have people who really get it as most people don’t understand what metastatic cancer is. When I was diagnosed the first time, people kept coming to the door with soup and flowers but this time no one does. There are some days when I’m flat on my back and I can’t get out of bed, but then there are other days when I’m out for a walk, looking trim in my workout clothes feeling fantastic. No two days are the same.

I just think people need a better understanding of the difference between the two types of cancer, and to know that we still have a lot of life to live.

Dublin woman Aine Murphy also knows how living with an untreatable disease can impact on mental health as she is also living with metastatic breast cancer.

“In September 2016, I felt a pinch on my left breast and could feel a tiny lump,” says the 55-year-old, who is married to Paul and has two grown-up children. “I’d had a cyst drained twice from the same area and thought it was back again so decided to wait as it wasn’t bothering me or getting any bigger as time ticked by.”

At the time she was working in the diagnostic imaging department in St Luke’s Hospital, Dublin.

“My daughter was getting married the following June, so I decided to get the cyst checked and drained prior to the wedding. But the GP had trouble locating it initially and I began to doubt myself and wondered if I had imagined it but finally, she felt something and referred me to the Breast Clinic at St Vincent’s.”

She was shocked to discover that she did indeed have cancer. She was given a date for surgery but then got called in for another consultation where she was told that the tests also revealed that she had further cancerous ‘deposits’ on her hips, spine and right breast. She was diagnosed with stage four metastatic cancer.

“I was dumbfounded that I would have cancer forever,” she says. I worried about how long I would live, how unwell I would become and when my demise would happen. I couldn’t sleep and was panicking every time I thought about the reality. However, I felt strongly that I didn’t want this to impact on my family and home life - if I crumbled, they would too, and I would find it harder to cope.

“This was going to be my new life and I was scared. I didn’t know how I was going to stay positive or enjoy anything again. I felt very isolated and alone.

“But we are all stronger than we know and somehow we get through things. I had lots of questions but was too afraid to ask as I might not have liked the answer but as the months ticked by, I got braver and eventually opened up. I have since been to counselling, acupuncture, yoga, information events, mindfulness, relaxation — literally, anything that’s offered, I will avail of.”

Being diagnosed with metastatic cancer can be an emotional time that can lead a person to have many fears and questions and moments of anger and confusion.

“At a time where a person needs the most support, it can sometimes be hard to fine,” says Helen Forristal, Marie Keating director of nursing services. “In light of the Covid-19 pandemic and in an effort to keep the most vulnerable safe from the spread, the Marie Keating Foundation runs free bi-monthly, online Positive Living meetings for women living with metastatic breast cancer.

“These meetings offer a safe compassionate space for them to feel informed, supported and empowered. The meetings allow women to share and learn from the experiences of those living with advanced breast cancer while receiving expert advice on relevant topics.”

JOURNEY’S END

Edel Cannon.
Edel Cannon.

Edel Cannon lived in Dublin with her husband Tom and three children. During a routine test, she was diagnosed with triple-negative breast cancer in November 2016, aged 39.

Edel spoke to ‘Feelgood’ earlier this year but sadly passed away on July 5. Here is the story she shared with us and her grieving family have given their consent for it to be published:

“I have the BRCA 1 gene and was being monitored by the family risk clinic in St James as I had an 85% risk of breast cancer and 65% risk of ovarian cancer,” she said. “My yearly MRI showed three tumours in my left breast, even though I had no symptoms and couldn’t feel any lumps so if it hadn’t been for the MRI, I might not have been diagnosed for a lot longer.

“I started chemo on December 20 and had a mastectomy and auxiliary clearance on the left side in May 2017 followed by 25 rounds of radiotherapy, six months of oral chemo and then a preventative mastectomy and reconstruction on the right side in August 2018.”

Edel, who was an accountant, thought that was the end of her treatment, but in 2019, she discovered what she thought was a cyst on her head. Unfortunately, upon examination, it was found to be cancerous and she was given the news that she had stage 4 metastatic breast cancer.

“This news was utterly devastating and scary I knew it couldn’t be cured, and that there were very limited treatments especially for triple negative as it has no targeted therapy available like the hormone-driven breast cancers,” she said.

“Unfortunately, a CT scan showed I also had disease in lymph nodes in my neck, chest, lungs and liver. 

This was another huge blow and I was petrified that I would be dead in a few months.

She started on a new treatment which worked well for several months, but, unfortunately, it stopped working and she was put on another trial drug which, while difficult to deal with, seemed to be keeping the progression of the disease at bay. However, a scan showed further development. Edel was accepted into a trial treatment which she had researched and applied for herself in San Francisco, but due to Covid-19 restrictions, she was unable to travel to receive treatment.

“It’s very hard knowing that all they can do is treat me and try to keep me alive and as well as possible for as long as they can,” she said.

“My husband has been amazing — he is my rock and I don’t know how I would have coped without him... I try to focus on the good things. I have done a lot of research which gives me hope and helps keep me positive.”

Edel Cannon was a valued member of the Marie Keating Foundation’s Positive Living Group, says Helen Forristal, who facilitates the group.

“We met on Wednesday, July 15 and shared our own sadness at Edel’s loss, acknowledging our grief but also celebrating her life and remembering what she meant to each and every one of us, personally,” she says.

“Edel has left her legacy here by simply telling her story.”

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