Bringing children’s cancer fears into the open

When Ruth Harris learned last January that she probably had some form of breast cancer, her first thoughts concerned how she was going to tell her family: her father, her brothers and, especially, her eight-year-old daughter.

She left Beaumont Hospital in Dublin that day after a triple assessment (mammogram, ultrasound and biopsy) with a handful of information brochures to read, including one about what to say to children. It outlined approaches for three age groups and her daughter, Lucy Fitzpatrick, fell into the middle group.

What jumped out at Ruth, who is 35 and separated, was “not to tell the child involved any lies and not to underestimate their intelligence”, she says. “At that age they are so clever and so clued into the world.”

However, she wasn’t sure how much she wanted to tell her only child. “I thought about it for a while and played around with a few ideas.”

As it happened, she and Lucy had booked a trip to Disneyland Paris for just three days after she was due to get the biopsy results on January 30th.

“It was as if everything happened for a reason around those few days,” she says. And when the diagnosis was confirmed, the consultant outlined the treatment plan. The first step was to go off to Disneyland and enjoy themselves, before Ruth would start four months of chemotherapy followed by surgery.

She felt she could handle that and was fine with the possibility of a double mastectomy if needs be. But the treatment plan was revised when they returned from their trip and a further biopsy, done on a spot on the liver that had been picked up by a full-body ultrasound, also proved positive.

“That, in a sense, changed everything,” says Ruth, who was assigned a new consultant. He scheduled six months of chemotherapy, with a review halfway and then again at the end.

“His take on it was if we don’t need to do the surgery we’re not going to do it.” But her initial reaction was that she still wanted surgery, “that I want it gone”.

In the weekends leading up to her first appointment for chemotherapy, on February 17th, she felt something akin to the “nesting” impulse in the latter stages of pregnancy.

“I gutted the house and I threw out loads of stuff and I brought new storage units. I scrubbed the house from top to bottom: I don’t know what came over me. I was up cleaning windows and people were saying to me, ‘You’ve got cancer now, you don’t need to do that’. I said ‘I don’t care what I have, I’m cleaning the house’.

“Lucy helped me; she was brilliant,” Ruth continues, as we sit and talk in their kitchen in Finglas, Dublin, her vibrant blue eyes emphasised by her now shaved head.

Once the chemotherapy had been scheduled, she knew it was time to say something to Lucy.

Strong medicine

“I sat her down and said, ‘Mummy has an infection. If you want to see, I have a lump under my skin’.” Lucy looked and saw how red and angry-looking it was, says Ruth. She explained to her daughter that she was going to have to take really strong medicine, that her hair was going to fall out, that she might feel sick and have to lie in bed for a few days, and that Lucy might have to go and stay with other family or friends.

“She said, ‘That’s all right’. She had a look at it and touched it and she was fine. She wasn’t upset. She was very together,” Ruth says. Then it was “Can we turn the telly back on?”

When Ruth’s hair started to fall out, she felt it was going to be very hard for Lucy to see her like that, so she needed to tell her exactly what was going on.

“Again I sat her down and said to her ‘What do you know about cancer?’ In her words she said to me ‘Mum, I know it’s something that people get, and some people get better and some people don’t’. And I said, ‘That’s exactly it.’

“Then I said to her, you know the infection I have, well Mummy’s infection is cancer. She said, ‘Is that why you’re getting the really strong medicine?’ And I said ‘Yes,’ and she said ‘is it going to work?’

“I said ‘Yes, the doctors have said it is going to work and I am going to be fine. She said ‘That’s okay’. And I thought, I think I’ve done a good job with this and she is comfortable and she understands. We just hugged it out and went on about our business.”

Ruth had also told Lucy that if she had any questions, or was upset, she shouldn’t be afraid to talk about it, or be scared to say the word cancer. And that if she didn’t feel comfortable talking to her, with Ruth’s brother and his family living just five doors up, there was plenty of extended family available nearby.

Although Ruth had no specific concerns about Lucy, she had been told by her liaison nurse at Beaumont about the Climb (Children's Lives Include Moments of Bravery) programme that was starting at the Arc cancer support centres in Dublin. Devised in the US, it is aimed at children aged five to 11 who have a parent, or significant other adult, with a diagnosis of cancer.

On making further inquiries and hearing much of the six-week programme was done through artwork, Ruth felt it was perfect for Lucy.

“To me it was a good thing to do,” she says. “It would give her a bit of an outlet; because we are so close to the guys across the road, I thought sometimes it’s easier to talk to a stranger.”

Lucy puts her artwork from Climb in a neat pile on the kitchen table and eagerly pulls out bits to explain their significance. Each session dealt with a different feeling and she starts to reel them off on her fingers: “There was happy, sad, confused, worried, how many is that? That’s four . . . Angry”, she adds, while racking her brain for the sixth one. But then she remembers they didn’t have one at the last session: they had a party.

Worry box

Out of those five emotions, she mainly feels happy, she says, but worries a bit when her mother goes into hospital. “I mostly don’t see her for the day,” she says, pulling out one of her favourite mementoes of the Climb course: a worry box.

“We decorated it and then we got pieces of paper and wrote what our worries were and put them in it. Then we got to decorate it more.” She admits she can’t even remember now what worries she put in, so she opens it up, picks out one of the four scraps of coloured paper and unfurls it.

“Cancer,” she reads. Another is about when her mother goes into the hospital. “I wrote two the same,” she confides in a whisper.

She holds up a mask: “This was to hide our worries and our feelings, if we didn’t want to tell anyone”. It turns out she doesn’t have much need for it.

“I wouldn’t hide them really from anybody,” she says. “I mostly tell you or my dad,” she says, looking at Ruth.

“Now this is the angry box,” she says, producing what looks like a large paper dice. “It rolls. So if I was ever angry I would roll the box and whatever one [came up], say ‘playing with my friends’, I’d go out and play with my friends.” Every side has something different she likes doing.

“I like drawing, reading, singing, watching TV and cheerleading,” she says, turning it over in her hands. However, it turns out she hasn’t needed to use this either. “I am never really angry.” Although, ironically, when she was making the box, “I kept getting angry at myself, because I kept on gluing my fingers together,” she laughs.

What was good about Climb? “I liked all the people there,” Lucy replies. “I liked to talk about stuff and I liked doing all the art – basically, everything.”

The parents of the children in the programme – it started in April with 10 and finished with eight – are hoping to organise a reunion soon. Now she and Ruth are counting down the chemotherapy sessions, which come around every three weeks, with the last one due on July 14th. “My mummy’s nearly better,” Lucy adds.

Ruth doesn’t like the thought that she is always going to be “someone who had cancer. It is moulding my future”. But on the positive side, it has given her a new appreciation of life.

“It makes you more thankful and more aware of the good things in life.” Just how short and cruel life can be was reinforced by the deaths of her two cousins, Alan (45) and Stephen (34) Harris, as a result of the recent sewer accident in Portmarnock. She had attended the second of the two funerals the day before we talk.

“The grief and the sorrow around having cancer are completely different,” she says. But they are there.

“It is a journey and every day is part of that journey – and some days it’s crap and some days it’s not,” she says with a smile.

She has been documenting some of the journey on Facebook, since she first posted about it on the day of her confirmed diagnosis. She was mindful, after finding a lump in her left breast, that she had “kind of put it off and thought about it, put it off and thought about it”, before going to her GP.

“If my post encouraged one person who read that post to go and have something checked,” she adds. “That was my way of doing something good.”

swayman@irishtimes.com

Onwards and upwards

In addition to the Arc centres in Dublin, the Climb programme runs in Éist Cancer Support Centre, Carlow; the Cuisle Cancer Support Centre, Portlaoise; Tuam Cancer Care Centre, Co Galway and the Cancer Support Sanctuary LARCC, Multyfarnham, Co Westmeath.

The organisations who have trained in it earlier this year but haven't run the programme yet, according to a spokeswoman for the Irish Cancer Society, are: Cork Arc Cancer Support House; Cuan Cancer Social Support and Wellness Group in Cavan and Hand in Hand Children's Charity in Oranmore, Co Galway

One of the trained facilitators is in discussion with Mayo Cancer Support Association in Castlebar with a view to running a programme there in the autumn and the Irish Cancer Society expects to be running the facilitators’ training programme again in early 2016.

One mother’s legacy: a gift to other families Working with groups of children through the Climb programme is a first for the two Arc cancer support centres in Dublin.

But when Arc was approached to host the six-week course, it immediately recognised the need.

Developed by the Children’s Treehouse Foundation of America, Climb (Children Lives Include Moments of Bravery) helps to normalise children’s feelings of sadness, anxiety, fear and anger, while stimulating improved communication between them and their parents.

It was two years ago, when Dublin mother Clare Clarke was looking for the best way to tell her own two daughters that she had been diagnosed with secondary cancer, that she identified the lack of support for children – until, and if, they were bereaved. Although she discovered the Climb programme, it was available only in Belfast, Co Galway and Co Westmeath. There was no programme available in Dublin.

Clarke worked for the Ladies Gaelic Football Association (LGFA) and she asked it to fundraise for a national roll-out of the Climb programme by the Irish Cancer Society (ICS). Poignantly, last February – on the day the first group of facilitators from eight organisations affiliated to the ICS finished their Climb training – Clarke died at the age of 35.

The establishment of Climb in centres around the Republic is her legacy and the LGFA is continuing its fundraising campaign, Climb4Clare.

Sitting in the gracious Georgian setting of Arc's drop-in centre on Eccles Street, Deirdre Grant, the chief executive of Arc, says the first round of Climb, both here and at its South Circular Road centre, went incredibly well. The next course, which starts on July 10th, is booked up but Arc will continue to run them regularly and keep a waiting list.

Like all the services offered at Arc, the Climb programme is free to participants. “Cancer is just so expensive,” Grant points out. The services range from counselling, massage and acupuncture to stress management, yoga and positive appearance workshops.

Despite the reason for people being there, “it’s not an awfully sad place. There is a knitting group below my office on Wednesdays and they have such a laugh”.

Step off busy, inner-city Eccles Street into the Arc centre and you’re immediately cocooned in a warm yet unobtrusive welcome. Classical music plays quietly in the elegantly furnished interior and volunteers are on hand to provide tea, coffee and biscuits, as well as further information and chat if desired.

On a sunny summer’s day, the garden out the back is a charming oasis, well endowed with wooden benches. Pink roses climb around a pergola, while a high wall of clematis has just finished flowering.

With about 20 volunteers working between the two centres, Arc operates on an annual budget of about €700,000 and recorded 10,400 visits in 2014, double the number in 2012. An independent charity, it depends on donations and fundraising to keep it going.

For more information see arccancersupport.ie or tel 01-8307333.