Cancer patients with young children: what do you tell them?

When Audrey Kindregan (39) was told that her cancer had returned in 2014, her big regret is that she lied to her then nine-year-old son Oisín about it.

“I lied because I was afraid. We had family and friends who had passed away from cancer. He was more aware of it. He’s very bright, intuitive, he knew something was going on.”

Oisín was only six when Audrey, a primary-school teacher in Co Galway, was first diagnosed with cervical cancer in 2011. A routine smear had indicated low-grade abnormalities and she was told to come back for a follow-up six months later, which then led to the diagnosis.

At that time, she and her husband Shane did use the word “cancer” when talking to their son about why his mother was going into hospital for surgery, but it didn’t really mean anything to him at that age, she says.

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“We didn’t feel the need to have a big talk with him – he wasn’t asking too many questions. He knew I was going to be okay – that’s what we told him.”

I went on about my life thinking everything was okay

Audrey had a radical hysterectomy in February 2012, followed by five sessions of brachytherapy (internal radiation therapy). “They thought everything would be fine then – they got it relatively early.”

So, when she returned to work at Scoil an Chroí Naofa in Ballinasloe in May of that year, “I went on about my life thinking everything was okay”.

However, it is always at the back of your mind, she says, and when she had some abnormal bleeding two years later: “I said to Shane, ‘I think it’s back’.”

She remembers she was preparing to do a children’s summer camp when she was contacted one Tuesday morning in July, 2014, with the results of the biopsy, which confirmed her fear.

“They wanted to see me the next day. I was a bit annoyed, thinking they’ll wait, I will go in on my own time.”

They had said come in at 11.30am and “I said, ‘I’m actually not available at 11.30’,” she recalls with an endearing giggle that underlines her sense of humour. “They convinced me to come in at 2pm anyway.”

It was after that, knowing she was facing more treatment, that Audrey tried to spare Oisín the truth. She had been putting clothes in the hot press when she turned to him and said: “Oisín, you know when people have cancer, sometimes two years later they need to have injections just to boost their immune systems.”

He accepted that, she says. But then people started sending cards, flowers and visiting and he became very suspicious. He was “listening at the door, picking up half stories and he was very worried”.

She kept reassuring him she was fine and, while she tried not to be in bed too much when he was around, the treatments that started in August 2014 were taking a huge toll.

“I ended up getting chemo, radiation and brachytherapy again, and it was horrific. The external beam radiation was the worst experience of my life. It was the area I had to get it done in. I was burnt outside, I was burnt inside, it was just horrendous. It was a big ordeal.”

She was regretting she had lied to Oisín, but felt she had to keep up the pretence. “I thought I was protecting him and I wasn’t – he was all confused.”

However, she didn’t want to admit to him that she had lied. “It would have been important for him to know I was telling the truth. We are very close.”

She had told him the “injections” were going to make her feel tired and as she struggled to recover from the treatment, she blamed the doctors for not wanting her to go back to work yet. “I tried to explain it all away and one lie led to another lie.”

I shouldn't have had more bleeding and I felt 'here we go again'

By that Christmas, she was “coming around”, but “I was never normal again,” she says, without any sense of self-pity. As someone who has had to reflect deeply on her own mortality, she has an aura of down-to-earth humanity, seeing through the trivialities of life that preoccupy so many others.

When her mother died very unexpectedly in January 2015, “that was another big hurdle to deal with”.

Audrey was aiming to go back to work in April 2016 and had just decided she needed another month off when she had more bleeding. “I shouldn’t have had more bleeding and I felt ‘here we go again’.”

Her gynaecologist knew from looking at the biopsy that it was cancerous, before a lab test confirmed it. “My options were pretty limited at this stage. I had had the maximum amount of radiation and chemo would only have been palliative.”

The one curative option was an operation called a pelvic exenteration, sometimes described as a “salvage” procedure. “They were going to clear out the pelvic cavity essentially.”

This third time, she knew she had to tell Oisín the truth, and also that it had come back in 2014 too. He said he had suspected that and was very hurt that she had lied.

While Audrey expected to lose both her bowel and bladder in the surgery, only the latter was removed and she now uses a urostomy bag.

“That was very tough – I was a month in the University Hospital Galway. Then I was in a week in respite care in a nursing home. Oisín always thinks that’s funny – I was the youngest by about 40 years,” she giggles again.

That was August 2016 and recovery was slow. “It was hard to do anything at all. I am still not supposed to lift. I have pain in my hips, pain in my legs, pain in my pelvis.

“I have radiation damage in my bowel, so they are talking about possibly taking my bowel out at this stage. I have lymphodoema in my legs.” She also has kidney problems from the radiation and is on a long-term antibiotic.

“I try not to take too many tablets because they can cause problems in themselves – the side-effects, you have to take more tablets for that. I don’t want to rattle when I walk.”

A complication for their family logistics is that Shane, an aircraft maintenance engineer, had to move from Galway Airport when it closed in 2013 to Dublin Airport to work. His employer has been very good, Audrey says, giving him time off during some of the worst times, but he had to go back to work and stays in Dublin most of the week.

“Just because you have cancer, the bills don’t stop coming through the door,” she says. “He had to go back and that is the way life is.”

Audrey decided during the past summer she would go back to work too – and did in September. “I did three successful weeks and then my kidney started playing up and I had to take some time out.

“The consultant didn’t want me to go back to full-time work but I am a bit stubborn and I like my luxuries. I didn’t go through all of this just to be sitting at home for the rest of my life feeling sorry for myself. And me being up and about and going back to work gives Oisín a sense of normality as well, and that is very important to me. All through this he was my priority.”

Audrey had heard a couple of years ago about Climb (Children’s Lives Include Moments of Bravery) programme, for children aged five to 12 who have a parent, or significant other adult, with a diagnosis of cancer. But the nearest centre delivering it was Tuam, which didn’t suit.

We learnt about cancer – the three treatments: chemotherapy, surgery and radiation

However, when she learnt that the East Galway and Midlands Cancer Support centre in Ballinasloe was running the six-week programme for the first time last November, she signed Oisín up.

He definitely got a lot out of it, she says. “He got to meet children in similar circumstances as himself and it was a safe environment to talk about something so threatening.

“They explore feelings over the six weeks; discuss coping mechanisms for dealing with each and how to recognise what feelings you’re having.”

Oisín too is enthusiastic about it. “We did games and art,” he says after he returns with his father as his mother finishes the interview.  “We learnt about cancer – the three treatments: chemotherapy, surgery and radiation and my Mam had all three. Every week we talked about an emotion. I do think it helped me a lot.”

Having seen how the programme benefitted Oisín, Audrey did the two-day Climb training herself and will facilitate the next programme at the Ballinasloe centre. “I wanted to give something back and it was really up my alley.”

Meanwhile, she is looking forward to celebrating her 10th wedding anniversary with a return trip to their honeymoon destination – Las Vegas. Relationships are tough without having to throw what she’s been through into the equation, says Audrey, who is “so grateful for all the sacrifices Shane has made to look after me”.

She takes life day by day, “every milestone that comes along, I am just happy to be here for it”. And she is already looking forward to Oisín’s Confirmation next April. As a Catholic, prayer is important to her, although, not surprisingly, she has had her “God, why me?” moments.

But she sums up her approach to life with the saying “we’re here for a good time, not for a long time”.

“I am used to being sick, I am used to being in pain and I am used to thinking like that. I say it out to people and it shocks them but it is just normal for me.

“I think there is too much secrecy in regard to cancer,” she adds, “and I am just not like that.”

Children’s Lives Include Moments of Bravery

What and when to tell the children is a huge dilemma faced by parents who have been diagnosed with cancer.

An estimated 15 per cent of people with cancer in Ireland are aged between 20 and 50 years old and many of them would have at least one child aged under 18.

A six-week programme called Climb – Children’s Lives Include Moments of Bravery – is designed to help those aged five to 12 to deal with a cancer diagnosis in the family. Developed in the US, it is now run in 35 cancer centres and hospitals around Ireland.

The almost nationwide availability of Climb is the legacy of Dublin mother Clare Clarke, who died of cancer at the age of 35 in 2015.  When she looked for advice on how to tell her two daughters about her illness, she found that while Cancer Focus Northern had a well-established Climb programme, a cancer centre in Tuam, Co Galway, was the only place in the Republic that had somebody trained to offer it.

Determined to make Climb much more accessible in the South, she and her colleagues at the Ladies Gaelic Football Association (LGFA) embarked on the Climb4Clare fund-raising campaign. Clare died on January 30th, 2015 – the day the first training course in the Republic for Climb facilitators started.

“We promised Clare we would drive behind it and, if we are being perfectly honest, we never expected it to get so big,” says Lyn Savage, development officer with the LGFA and a close friend of Clare.

They have been phenomenally successful in funding and organising the training but they are also keen to raise awareness among families affected by cancer, so they might look for a programme near them.

It has also started “Writing for the Future” training – a scheme where volunteers sit with people close to death to compile a book with them of their thoughts and feelings for their children.

“They pick their favourite photos – then it is printed in a hardback book and given to the family. Some will give it to their families before they pass away, but most will ask to hold it until post-bereavement and give it to the kids,” says Lyn, who did this with Clare for her two daughters, who were 13 and six when their mother died.

Climb4Clare has got to the stage where the LGFA now wants to it to be adopted as part of the national cancer strategy, to ensure it is sustainable.

“As a sporting body, we have the passion but not the expertise to keep it going,” says Lyn, who does all her Climb4Clare work in her spare time, in a voluntary capacity. Very conscious that it could be asked “who the hell are ladies football to say there is this gap in cancer services?”, the LGFA commissioned the first evaluation study of Climb in the Republic.

“Children of Parents with Cancer: An evaluation of a psychosocial intervention”, led by Dr Carla O’Neill of DCU’s school of nursing and human sciences, found that participation in Climb seemed to be a positive step for all of the children surveyed in what was a small, pilot study.

“It gave them a chance to express their worries and meeting other children in a similar situation appeared to have a somewhat calming effect as they bonded as a community,” the study notes. It was also a psychological support for parents, as they felt that the programme removed some of the burden of responsibility of talking about the diagnosis to the children.

Through the use of arts and crafts to facilitate discussions, children were better able to express their emotions and communicate more openly with their parents afterwards.

“The important change,” adds the study, “was that the children now had words to articulate what was happening at home and they were now part of the illness conversation.”

• For more information on Climb, email lyn.savage@lgfa.ie or tel 087 131 6944.