Almost exactly one year ago, Deirdre Kelleher Dowling, PhD, lecturer at UCD in nursing, wife and mother of two teenage girls, wrote about her diagnosis, first with breast cancer after a routine mammogram in 2014, and then in 2017 with metastatic breast cancer that had spread to her lungs. She described her devastation at the news, but also her determination to live positively — “I feel when you hit rock bottom, the only way is up” — and conviction that “it’s not all doom and gloom”.
Deirdre was an advocate for greater awareness around cancer in general and metastatic cancer in particular, a committed supporter of the Marie Keating Foundation’s positive living group. Very sadly, Deirdre died recently. Before her death, she had planned to contribute to the Foundation’s campaign, Breast Cancer Isn’t Just Pink. Instead, her husband, Des, is doing so.
“My only motivation to do this is that Deirdre started something, and she’s not able to finish it herself,” he says. “I was very much alive to the good work the Marie Keating Foundation do, and so it seemed appropriate to try to help to finish it.”
When Deirdre went into hospital shortly before her death, Des says, “It wasn’t necessarily clear that she wasn’t going to come out. This campaign was so close to happening that it was unfinished business, and I thought that if I could do something to conclude it for them, I’d try to do it. Given that the Positive Living Group was something Deirdre found useful, I was happy to try and help in that message.”
Of the group, he says, “Some people might think — is it just going to be people comparing war wounds in a sense, instead of something that’s going to be uplifting? But I think it’s worth making the point that this is about positive living. Certainly, that was Deirdre’s experience of it.”
And the group provided the possibility of “talking in a way that you can’t to any except your nearest and dearest — and sometimes not even then. Deirdre would have been selfless about this, in trying not to burden us more than she had to. As the husband, you want to be as much support as you can. You don’t want somebody to be holding back, but I do think there is an extent to which you [the patient] get a bit of freedom in this kind of group, where you can download without worrying about: ‘Am I going to upset somebody more than I should…’”
Before moving into lecturing, Deirdre worked as a nurse. As such, “she would have dealt with bereavement and illness”, Des says. “That was very much part of her decision to be involved with the campaign. Her approach was very much led by a focus on the patient. She probably would have had quite a traditional approach — putting the patient first and foremost. Any campaign that seeks to assist and educate is one she would have been naturally drawn to.”
Plus, he says, “Deirdre was very sociable. She would have been drawn to the existence of the group in the first place. And her participation in these things was always with a view to what she could give to it, as opposed to what she was going to get from it. Once she got into it, she would naturally have been thinking, ‘What can I do to help this?’”
Deirdre’s wish to support the campaign was centred on the idea of support for those going through cancer, raising awareness — “To be conscious that, while you can have the all-clear, there is a chance of recurrence and therefore to be sure you’re getting checked on a regular basis: the earlier you can identify that, the better it is” — and also a recognition that was close to her heart that, as Des says, “you not be defined by illness, by cancer. OK, you are sick with this awful thing. But you’re still the same person. You want to find ways in which you can live beyond or wider than this awful disease and the treatment that goes with it.”
By which he means “trying to live as well as you can within the time that you have, within the constraints that are there by virtue of the illness or the treatment. The care Deirdre received was absolutely first class. The medical team were conscious that it wasn’t just about the treatment. The focus is very much on the clinical piece, but our experience was that it wasn’t blind to the fact that you had a life beyond treatment and the better that life went for you, the better your psychological wellbeing, and that you were probably better equipped to face into the next thing that had to be done.”
That said, Des is very clear that Deirdre “saw her job as trying to go through the treatments, as tough as they might be at times. This is how she described it: having the treatments, bearing with them, with a view to trying to be as well as she could, was the job. But of course any job is part of the total life, and one thing reinforces the other. If you can see beyond the immediate, you’re going to feel a bit better.”
We discuss the idea of living “in the moment”, with Des adding a very interesting perspective: “You’ll see it in a lot of the literature — to not think too much about the future, to live in the moment, to live day to day. That certainly has a value. But we are human beings, and part of human nature is that you do look forward. You do want to see life stretching before you. Any terminal illness robs you of that, but you can still have some prospect out of today or tomorrow. You might not plan for your retirement, but you can plan for the weekend; the nature of the human condition is that we want to live beyond the moment.”
Part of the need for greater awareness around metastatic cancer, in particular, is an education piece for the broader community. “Cancer,” he says, “is such a difficult subject: even to say it at times can be difficult for people, and there probably isn’t as much awareness as there ought to be of the possibilities of stories that are not so good. I found, and I think Deirdre found, it could be a bit frustrating at times that the nature of her cancer — metastatic; treatable but not curable — often didn’t sink in with people. They would wonder, ‘When is her treatment going to finish?’ or they’d say, ‘There are such great innovations; all kinds of cures coming down the line…’ It’s not that you want to be negative, far from it, but I think at times people grasp at straws, and that can be frustrating for the person who has the illness and for those of us, their loved ones, who are around them. It’s not that I wish to be harsh about that, I really do not,” he says. “It’s just that part of the campaign can hopefully and usefully, while not frightening people, add to the awareness of the nature of metastatic cancer as something that is treatable but not curable. Knowledge is good. You’re more sensitive to what people might be going through if you have a better understanding of the nature of it. Some people are more comfortable with it than others. And that’s fine. You realise who is happy to talk, who you can download to, and who would prefer to have a discussion on a separate issue. And that’s fine too — that’s useful as well, to take you out of the same subject.”
The unpredictability of metastatic cancer is something Des is also keen to highlight. “Nobody can really tell you what stage someone is at, and that’s not because the medical team are not communicating. They communicate as well as they can within the knowledge that’s available.” The truth is, “At any moment there is the likelihood that somebody could go downhill quite quickly. That’s always in your mind.” So when Deirdre went into hospital, “you know there is a possibility of her coming out, but equally there’s the possibility she won’t”.
This unpredictability is just one of the “difficult things about the illness,” as Des puts it, which is why he sees “a higher purpose” to his involvement with the campaign. “This is an awful illness and you want to do whatever you can to bolster the efforts of those who are active in addressing cancer issues.”
The Marie Keating Foundation Breast Cancer Isn’t Just Pink campaign, supported by Roche, filmed four women living with or after breast cancer. The video series, breast cancer information and links to support groups for every stage of a cancer journey can be found at mariekeating.ie/notjustpink. The Breast Cancer Isn’t Just Pink awareness campaign is dedicated to Deirdre Kelleher Dowling.