When a parent is diagnosed with cancer, what should they tell their children and how can they support them?

GILLEAN GUY’S first encounter with cancer came when she was expecting her eldest child in 2002 and she was diagnosed with a malignant melanoma on her left arm. “I was lucky, it was only grade one and they just removed it.”

She worried that the cancer might not have all been caught but pushed those thoughts to the back of her mind during the busy years of new motherhood and leaving her job with a recruitment website in 2005 to set up her own baby gift business, SimplyBaby.ie.

The birth of Laura, who is now seven, was followed by the much more traumatic arrival of a second baby girl named Brenna. Complications right at the end of the delivery caused her to be “born dead” and hospital staff spent 25 minutes resuscitating her.

“I remember thinking sometimes these babies are better off not being resuscitated, which is very harsh, but we really did not know what we were going to end up with.”

She and her partner, Mark Nolan, were told it could be a year before they would know if their daughter was brain damaged.

The awful uncertainty affected her bonding with Brenna and she was diagnosed with postnatal depression. “I used to look at her and think, ‘you might be all right; you mightn’t be all right’. Fortunately she was as bright as a button and met all her milestones early and then we knew ourselves.”

It was through annual monitoring of Gillean after her skin cancer that it was noticed her lymph nodes were beginning to grow. In November 2008 she was told she possibly had another cancer but it was the following January before it was confirmed as follicular lymphoma, a non-Hodgkin’s lymphoma. She was 41.

“I kind of got a shock. I had noticed I wasn’t looking well. People would say ‘you look fine’ but I used to look in the mirror and think ‘God I look dreadful, is this what having two kids does to you?’”

Another “very odd reaction” she had to the diagnosis was relief that it meant she did not have depression, for which she was being treated – “because you could deal with cancer; depression you never know if it is going to go away”. What appeared to be prolonged depression had been attributed to a roll-on from the postnatal episode to grief at losing her father – to cancer – in May 2008.

It was “horrendous” for her mother, she says, having lost her husband just seven months previously and then hearing of her eldest daughter’s diagnosis. “She was grieving for my dad and then she was panicking for me. I was very upset for my mother.”

Sitting on a sofa in the front room of her three-bedroom home in Lucan, Co Dublin, Gillean says she likes to deal in “cold hard facts”. With two children aged two and five at the time of diagnosis, she wanted to know if there was a time limit.

Given statistics on survival rates over five and 10 years, “you start thinking in five years they will only be that age, in 10 years they will only be that age”.

However, as it is a cancer that usually occurs in people over 60, there was no clear prognosis. She was told that, due to her age, more treatment options would be open to her, including stem-cell therapy.

She and Mark were very worried about how Laura, having experienced her grandfather dying at home, would deal with the news that her mother was now ill.

“We sat her down and told her I was sick and that I would have to get treatment. It would make me tired and that I wanted to play and do things with them but, because of the medicine, I wasn’t going to be able to do these things.

“She understood what cancer meant and she did have fears that I was going to end up like Poppy and die. We tried to assuage her fears.”

Parents with cancer are advised to be as honest as possible with their children, says Joan Kelly, nursing services manager with the Irish Cancer Society. It is a mistake to think you can hide it from them, but they do need to be given information in an age-appropriate way.

For children it is often the small things that matter, like who is going to put them to bed, who is going to make dinner, who is going to pick them up from school.

You cannot overestimate the importance of trying to keep a sense of normality, stresses Kelly, who edits patient booklets, including one entitled Talking to Children About Cancer.

A diagnosis of cancer and treatment is a challenging time for anybody, both mentally and physically, but when it coincides with the emotional and exhausting demands that come with raising a young family, it is particularly tough.

Gillean had six rounds of chemotherapy at the James Connolly Memorial Hospital in Blanchardstown, starting in February 2009. Each time she went to her mother’s home in Castleknock afterwards for two or three days to recuperate.

She felt the children did not need to see her at her worst just after treatment but she kept in regular phone contact with them.

“The next morning you feel like you have been hit by a bus; you have no energy to lift your head off the pillow.” With three weeks between treatments, she had about 10 days when she was really down and another 10 days when she was on the way back up.

Meanwhile her partner had to juggle his work as a self-employed insurance broker with looking after the children, organising pick-ups, shopping, cooking, managing the house, caring for Gillean and driving her to hospital appointments and also keeping her business ticking over.

“Mark, I have to say, was magnificent. I don’t know whether I could have taken all the pressure that he took on his shoulders. He was a rock.

“People look at me but I had the easy part – I just had to lie in bed and take my medicine.”

Her big concern was for Laura. “Brenna was just too small to understand but Laura was big enough and I did not want to put in her fears of illness and death. I would say to her ‘Mummy is not going to die’.”

Gillean had thought it would be best to pre-empt chemotherapy-induced hair loss by shaving her head. She went out and bought some pretty scarves and sat Laura down to explain what she was going to do but was unprepared for her daughter’s reaction.

“I thought I would make it fun but to her it was just horrendous that I would shave my hair off. Maybe in her mind, if I kept my hair I wouldn’t be so sick.”

As a result of Laura’s upset, she did not shave her head and, in the end, did not lose her hair during treatment either – it just thinned out.

Eighteen months on, Gillean’s enthusiasm for life and work is back. She dares to dream again about what they might do as a family and what she will do with the business.

She gets a top-up treatment every three months, designed to stop rogue cells cloning, she explains, which should keep the cancer at bay 50 per cent longer – “whatever that 50 per cent may be”.

There is no cure for the cancer; it goes into remission and, realistically, she does expect it to come back – but that is not something she wants to dwell on.

There was a time when she had letters written about what was to happen if she was gone. She has always believed in the importance of memories and diligently kept pregnancy diaries and baby books after her daughters were born, which she still writes in.

“So if, God forbid, I were to go early, they will have a record of me. That was my biggest fear, if I was to go, particularly if they were very young, they wouldn’t have a lot of me in them.”

Confined to the bed for long periods, she found Facebook “a godsend”, allowing her to catch up with friends and family on both sides of the Atlantic (her childhood was divided between Dublin and Connecticut) from her laptop computer.

After her chemotherapy was finished, Gillean and Mark went with the children to Disneyland Paris in October 2009 – a trip that was a gift from both their mothers.

It was great to see the kids laugh, she says, “particularly Laura, because she really had been through the whole trauma herself”.

Last March, Gillean designed a “princess bed” for the girls – in the style of an L-shaped, grey turreted castle, decorated with pink roses and with a slide down from Laura’s top bunk – which was built in the biggest bedroom of the house.

“To me it is like a dream bedroom,” she says with a smile. “My kids are small for such a short time and I just want to make the most of it. These are the things they will remember if I am not here – they will remember we went to Disney, my mammy made that bed for us. I just want to make happy memories for them.”

The explanation that 'I was a pirate' was accepted as a much more logical reason for the hair loss

Gillian Quinlan was always careful to make sure her head was covered when her three-year-old son was around, fearing her baldness would upset him.

He asked many times about the scarf but when her explanation that medicine had made her hair fall out failed to satisfy him, she eventually told him she was a pirate – and that he accepted as a much more logical reason.

But a couple of weeks ago she did not hear him coming into her bedroom and had nothing on her head. “He just said to me ‘why did you take your hair off?’”

Then he laughed, told her she looked like “gramps” (her father) and was absolutely fine about it.

Gillian’s diagnosis of breast cancer came out of the blue earlier this year. She was in the US on holidays in May with her son and husband when she noticed a discharge from a nipple.

She was immediately concerned because she had a friend whose breast cancer had manifested itself in the same way. She called her GP from the US and he made an appointment for her at the breast clinic as soon as she got home to Cork.

The mammogram did not show anything but a small lump was detected by ultrasound and a biopsy was done. Days later cancer was confirmed.

“The shock of the diagnosis is the hardest moment,” says Gillian who, at 41, was revelling in relatively late motherhood. “I had a very happy family life. My son is a great source of joy to us. It was a huge blow.”

She recalled a friend who had been through cancer saying that finding out was the hardest part. “And she is right, it is the worst possible moment. After that everything that happens is with the hope of making you better.”

She had the breast removed on June 10th and completed six sessions of chemotherapy last week.

Both she and her husband are from Dublin so they don’t have family living near them but her mother went down to help out on the worst days after treatment.

As her son is so young, she did not tell him about the cancer and has tried to keep things as normal as possible.

“The big difference for him is that every three weeks I am confined to bed for four or five days.”

It might be confusing for him taking instructions from different people when she “disappears out of the loop” for a few days, she suggests, “but apart from that I think he is fine”.

“In the Montessori they say he has not shown any signs of being upset so I think he has come through it pretty well.”

'It makes you appreciate life more.'

The day Ena Twomey went to her GP with a suspicious lump in her breast was also the day she found out she was expecting her sixth child at the age of 42.

When the lump was confirmed as cancer and she was told she needed an immediate mastectomy, her main concern was for her unborn baby.

She remembers asking nurses if they knew anyone else who had been diagnosed during pregnancy. They didn’t, which was the main reason she later became involved in peer-to-peer counselling with the Irish Cancer Society’s Reach to Recovery support network for breast cancer patients.

With five children ranging in age from seven to 18, the Twomeys decided to break the news of her cancer to each of them separately at home in Killiney, Co Dublin – apart from the youngest, who was not told.

They each reacted differently; some asking lots of questions, others not wanting to know the details.

The arrival of a baby girl on January 1st, 1999 was a huge joy for all the family.

Six weeks later, Ena started four sessions of chemotherapy, followed by four weeks of radiation. The teenagers “came into their own then” looking after the baby.

It was such a busy household, she says, that as long as she and her husband appeared to be coping with everything as normal, the children were fine.

Nearly 12 years later, looking a picture of health and vitality, she recalls her experience of cancer with a sense of detachment that time brings but acknowledges: “It certainly makes you appreciate life more.”

Talking to Children About Cancer is available from the Irish Cancer Society or can be downloaded from its website cancer.ie. Its helpline for any type of cancer is 1-800-200700

swayman@irishtimes.com