‘With cancer, you have a kind of camaraderie. It is very sociable’

At the first mention of palliative care, Aisling Keavey thought "that's me gone".

So much for the 2½ years she had been told she might have after being diagnosed with stage four breast cancer, which had spread to her spine, in September 2019.

The vision in her head was “me lying in a bed, with no hair, tubes connected to me and palliative care being administered to me”. She laughs as she recounts this almost two years later, sitting on the sofa in the living room of her own home in Swords, Co Dublin, and smiling under a good mop of chestnut brown hair.

Aisling is living proof that palliative care is not what she initially imagined when she was first registered with St Francis Hospice in north Dublin. Among other things, she has participated in exercise classes through Zoom (see below).

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"It is a very sociable thing," she says. "With cancer, somebody is going through something similar, if not the same, and you have that kind of camaraderie." But initially, "you hear 'hospice' and you just think 'dying'; they offer so much more than that", she stresses, ahead of Palliative Care Week, September 12th-18th.

Since starting on chemotherapy tablets as part of a clinical trial at Beaumont Hospital, receiving radiation at St Luke's and then going to Germany last October for two weeks of alternative treatment, aimed at strengthening the immune system, Aisling seems to be in a stable phase. She attends Beaumont for monthly injections and for scans every three months.

“I think because we went to Germany, that gave me so much hope. It saved my life,” says Aisling. “I have hope now for the future, which is something I didn’t have.”

But she is also realistic. "There is a time period on the type of cancer that I have – bone cancer – of five years; nobody sees much more than that." Although her husband, Peter Keavey, is quick to interject that "it depends on the person and the case and how it progresses".

Aisling, Peter and her teenage daughter, Emma Louise McConnell, are a tight family triangle who manage Aisling’s illness together, with no secrets between them. All three are very conscious that “making memories” is important, yet so too is keeping life as “normal” as possible.

“It is amazing the three of us are very similar in that regard,” says Aisling, who married Peter four years ago. “There isn’t one of us who would fall to pieces or is flaky. We’re all quite strong and accepting of the situation.”

Here they talk about living with cancer as the patient, the husband and the daughter.

Aisling Keavey (47), mother, wife and cancer patient

“Back in January 2019 I went in for a breast check to Beaumont Hospital. I had lumps but they said they were just cysts.” She didn’t have a mammogram.

After continuing pain she went back in March. “There were more new lumps and they said the same thing, that it was just cysts.”

On holiday in Lanzarote that summer, Aisling suffered terrible back pain, which she thought could be down to the different bed. When she went back to hospital on her return, she was told it was a viral infection and was sent home.

The pain continued but, meanwhile, after some years of working in the home, she had secured her “dream job” with the security team in Dublin Airport. “I was going for my uniform fitting; I came out and rang Peter and said I am going to go into the hospital now and get this sorted once and for all. I went back into A&E and refused pretty much to leave until they got to the bottom of it.”

She never got to wear that uniform. After being kept overnight for tests, a specialist “more or less prepared us for the worst”. Although the couple were expecting bad news, when the diagnosis of breast cancer stage four that had spread to her spine was confirmed, “it still hit us like a steam train”. A doctor, she says, apologised for it not being picked up sooner, and her not getting a mammogram, “which was worth feck all to me but what can you do? You have to accept the card that you’ve been dealt.”

Not long after that, Aisling had to call an ambulance to her home because she couldn’t move for the pain. “They drugged me up before they could take me out. That was the longest stay, I was in for five weeks. It took that long to get the pain under control.

“We came home from hospital with bags and bags of pills and tablets. I remember, we all sat down at the kitchen table and it was the first time we had any kind of disagreement at all about anything. We were just so overwhelmed with the amount of tablets: when to take what, how I should take it – with food or without food. At the time I was reacting to the chemotherapy tablets, so I was very sick; I was finding it hard to keep down the pain medication.

“St Francis Hospice staff came out to the house and they came up with this thing called a blister pack – it’s a weekly pack, in which the pharmacy fills pouches with the correct pills and dosage. They organised so much and they are always on the phone. The staff are all so upbeat and friendly.

“I was told I was not to lift as much as a kettle. So I can’t do housework; I need help dressing myself and undressing myself.

“My independence has been taken away from me, which is something I always held dearly. You have to let yourself go and be reliant on other people. That was very hard for me. That is where St Francis came in and gave me aids, to give me back a little bit of that.”

As Peter was phased back to work with Aer Lingus after lockdown, Aisling missed having him around. “It makes me sound like I am totally dependent on him, which I am to a degree, but I am driving. I can go off on my own and meet people, which I do.”

While Aisling describes her daily life as “very dull”, she acknowledges that she is lucky to have many friends and a large extended family. “I try to remain as sociable as I can.”

She’s planning a week in Lanzarote with a friend in October.

On an average day, she waits for Peter to come back from work, to go to the shops or go for walk. “I can walk but not very far. Me and the TV have a very close relationship now.

“I have a friend around the corner and I try to get up to her most evenings, just for a change of scenery. But if there is anything going on I will go to it”, be it a christening or wedding, etc.

“I am in pain every day but not to the point of what I was in. Not cripplingly so that I am not able to function.

“Life has to go on and we just enjoy it as best we can. We have plans. That is the only way you can get through something like this, is just to keep on looking forward.

“I know the end is coming a lot sooner for me than a lot of other people. There are days when I think about what Emma Louise and Peter will do without me but those days are few and far between. I don’t dwell on it.

“I am glad they have each other for this journey and I am glad they will have each other after as well.

“Time is all I want,” adds Aisling, who admits she finds it hard if Emma Louise talks about how she’d make a great granny or going shopping for her wedding in the future. “Peter can do it. He has a good eye for a white dress.”

Peter Keavey (42), husband and stepfather

The second time Aisling went into hospital in the autumn of 2019 and stayed for five weeks, Peter didn’t think she was ever going to come out. “That was my own fear taking over.”

He and Emma Louise kept each other going, both busy with work and school respectively, running the house and visiting Aisling. “There wasn’t a huge amount of downtime when we were sitting saying ‘how are you today?’”

One night, after Aisling rang to tell them to take a night off visiting, get a takeaway and watch a movie together, the pair opted to binge watch episodes of The Great British Bake Off.

When Aisling’s condition seemed to stabilise after starting the chemotherapy tablets, they were given, he says, “a more open bracket” on life expectancy. Then they heard about somebody locally going to Germany for alternative treatment, so he and Aisling looked into it and booked in to that same centre. But when the pandemic hit, the clinic had to close as the doctors were reassigned to hospitals.

“I managed to find a second place in Germany, in Frankfurt, that offers the same sort of treatment. They came back with a programme and offered us dates but, due to the pandemic, they said they would have to condense it into two weeks.”

However, that was ideal because it minimised time away from Emma Louise and the trip fell in between Aisling’s monthly appointments at Beaumont, “so it never interfered with treatment here”. However, any doctors they asked about it before going were sceptical, saying they couldn’t recommend it because they didn’t know enough about it.

“It didn’t put us off,” says Peter, nor did having to work around the Covid-19 travel restrictions.

“The outlook over there was completely different and we learned a lot about living with cancer as opposed to dying with it.” The treatment Aisling received there included various types of infusions, which concentrate on different areas such as inflammation and active cancer cells, Peter explains.

“The tumour count in her blood has been going down steadily since our return from Germany, to the point where we were in there last Thursday and the doctor said we are now on a much lower level. That’s not just good, it’s an excellent position to be in.”

He agrees with Aisling’s observation that he tends to get overwhelmed by good news. “I don’t want to grasp on to something because there is always that fear that the rug will be pulled out from under you next month.

“It’s something that can’t be cured but it is something that can be treated. We’re nearly at two years now,” he says, yet they consider themselves in many ways to be in a better position than they were at the outset of Aisling’s diagnosis.

“As things have progressed, it has given me the ability to look forward as well. I am always aware that situation could change at any time.

“I have to be able to be strong, take a breath and say ‘okay, this is where we are now’. I think, if anything, I am thankful.

“We were handed something that we thought was a ticking timebomb. We have been given the opportunity to at least have the time together, to be able to say we know and understand our lives together and what it means to us. If that ever changes, it is not going to change what came before.

“Emma Louise knows I love her and that we are together as a family,” he adds, “and that will always be.”

Emma Louise McConnell (15), daughter

The first time Aisling went to the hospital emergency department after returning from the family holiday in Lanzarote, “we all went in with her, it was 16 hours”, says Emma Louise, who was just about to turn 14 at the time.

Some weeks later it was a Friday evening, Aisling recalls, when she and Peter had to tell Emma Louise it was cancer. “It was 10 to seven and we sat her down: ‘This is the story...’ She shed a little tear and then said, ‘Okay, can I go out to play now?’ And off she went out with her friends and never said a word to them.”

However, says Emma Louise, “obviously it was on my mind”. But due to the shock, it didn’t properly set in until the next day. Or maybe not until at school the following Monday when a few of the teachers who had been informed and friends who had heard started to talk to her about it.

“When no one had known, it was just kind of in the house and once I was outside the house it was fine, almost like I was running away from it.” But on the Monday she realised that “this was what was happening now and this was how life was going to be. It was so surreal and real at the same time. It felt like it was a dream but it wasn’t.”

Like teenagers everywhere, she found being cut off from her peers during lockdown very hard, “even when the restrictions started easing and a few of my friends were going on walks together outside and doing some stuff. Obviously I couldn’t go out to them and do any of that because I didn’t want to bring anything back to my mam.”

Now Aisling is vaccinated, Emma Louise, who has just started fifth year in Loreto College Swords, can bring friends back to the house. "They all love my mam, every single one of them."

Aisling and Peter left Emma Louise to make her own decision about being vaccinated. While a bit dubious, she did get her first dose in August, as have most of those in her close friend group.

“Everyone my age is saying the same thing, that we don’t exactly want it but I suppose for life to go back to semi-normal, you kind of need it.”

Friends ask Emma Louise from time to time how her mother is “but we wouldn’t dwell on it”. There is no question of “my mam has cancer” defining her.

“My mam is fine to a certain degree, so there’s no point in having deep chats about it when I am fine not talking about it.” Equally, “I am able to talk about it without crying. If they are curious and they want to ask a question, they don’t have to tiptoe around it.

“People come up to me and say, ‘I don’t know how you do it, if that was me I would be crying all the time.’ There is nothing you can do – you could cry all day but what is that going to achieve?”

Does she think about life without her mam? “I live day to day and don’t think about it but you have to be realistic; nobody wants to lose their mam, especially this soon.

“Instead of crying about what’s going to happen in the future, she’s here today, she will be here tomorrow. I spend as much time as I can with my mam and make memories with her now instead of thinking about what’s going to happen.”

Hospice exercise programme

The trend in referring patients for palliative care much earlier on in their illness has prompted the development of a new exercise programme at St Francis Hospice in north Dublin.

The Palliative Enablement Exercise and Rehabilitation (PEER) programme was devised by the hospice’s physiotherapy and occupational therapy departments.

After the diagnosis of a life-threatening illness, people wonder should they behave differently, for example, is it still okay to go out and walk the dog, says Fiona Cahill, a clinical specialist physiotherapist at the hospice.

“What we were noticing a lot with these patients is that they were maybe a little bit fearful and had disengaged from a lot of their routine activities.”

Although this is a group programme, hospice staff meet each participant individually beforehand, halfway through and afterwards, to discuss capabilities, goals and see how well they are achieving them.

“Some of them say they would love to be able to go back around the shops; for others it’s ‘I would love to go back to playing a game of golf’ or ‘go back to my craft’. Whatever it is that is important to the person.”

The twice-weekly sessions over six weeks combine exercise and education and have been conducted through Zoom since the launch of the programme during the pandemic.

Cahill says staff were a bit nervous that the peer support aspect wouldn’t work online but it has, particularly during the education component, when, for instance, discussing symptoms and strategies.

But she looks forward to the day when the groups can enjoy that sense of solidarity in-person over a cup of tea at either of the hospice’s centres in Raheny or Blanchardstown.