Despite more effective treatments and improving survival rates, cancer is still a subject most of us would prefer to avoid. It's as if we fear the word as much as the condition. But with four in 10 of us likely to contract it at some time in our lives, the need for openness has never been greater. As Macmillan Cancer Relief launches its latest schools awareness project, Wendy Wallace reports on how one family came to terms with disease and death and, on page 12, an A-level student tells his story of survival.
When Tony Armstrong-Frost comes home at the end of the school day he says hello to the dogs, switches off the radio he uses to keep them company while he's out, and fills the kettle. He has a few minutes to himself before the children get home - first Tom, 10, and Jake, seven, by taxi from their primary school, then Izzy, 12, who comes on the bus. He fiddles with the tube of a fluorescent light on the blink in the kitchen, hears a car pull up and goes outside in the gathering dusk to welcome the boys.
Tony looks after the children on his own since his wife, Heather, also a teacher, died just over a year ago. She had lived with cancer for seven years, keeping herself alive in the late stages to talk to her children, hear them read, see her daughter into secondary school. Her death wasn't sudden, or dramatic; she just fell asleep, says Izzy.
The hospital bed has gone from the living room, but Heather's presence is everywhere in the house, from the photographs on the mantelpiece of a smiling, dark-haired woman to her framed watercolours on the wall, and most of all in the children's unaffected sweetness.
With recent research showing that four out of 10 people will suffer from cancer at some time in their lives, Macmillan Cancer Relief's latest schools information project - which aims to educate the next generation about cancer and to dispel some of the fear and misunderstanding that continues to surround it - is timely and necessary. Few children will grow up without knowing someone in the family or beyond who is living with cancer. But the continuing stigma attached to the disease makes it difficult for children to get the understanding they need.
The Armstrong-Frosts, who continued at school as teacher and pupils throughout Heather's illness, show what a huge difference informed support makes to a family affected by cancer and how vital it is for schools to become agents of open and informed discussion.
It's tempting to describe Tony Armstrong-Frost (he got the Armstrong from Heather when they married in 1989) as larger than life, in his check shirt and bright blue tie, with his ginger beard and kind, creased face. Now 54, he met Heather at college 20 years ago. "We were a unit, from then onwards," he says. By the time Heather was diagnosed as having breast cancer in 1991, they had two children, the youngest just 18 months old. "She wasn't ill when she went to the doctor," says Tony. "It was a stunning shock. She was only 31."
But Heather, whose mother was a school nurse, was practical about her cancer. She had an immediate mastectomy and recovered well from the operation, which she described as being like any other major surgery. Specialists talked to the couple about the possibility of her taking the cancer-inhibiting drug Tamoxifen, then new and still being trialled. Tony stares out of the window at the winter horizon as he says he doesn't feel cheated by the doctor who suggested she didn't take the drug. "She became very healthy," he says.
Check-ups revealed no evidence of cancer; Heather was the given the all-clear and resumed her life. No longer teaching, she was by this time running the village shop, which put the family at the heart of their small community in Northamptonshire. "Everybody in the village knew what the situation was and we got a tremendous amount of support," says Tony. But not everyone could talk about it. "There were people who we had to be careful with," he remembers. "We were more afraid of hurting them than they were of hurting us. And some older people couldn't bring themselves to refer exactly to what she'd had done. They were shocked if she actually said she'd had a breast removed."
Two-and-a-half healthy years - "we were extremely close" - and another child followed. The children were kept informed, at a level appropriate to their age. Izzy and Tom had lived with Heather's illness almost throughout their lives and there had always been open discussion, says Tony. But the word cancer was avoided. "Initially we decided there was no point putting a name to it, because they were so young. It would have been the same if it had been gallstones. They knew she'd been ill, and the result was the operation." Heather became ill again late in 1995, with a tumour on her back which threatened to paralyse her. That Christmas, the children opened their presents around their mother's bed in the spinal unit in Nottingham hospital before she went in for 12 hours of surgery. "It was the only time I saw Heather frightened," says Tony. "She was frightened she was going to go to sleep and not wake up."
She made it through the operation and came home to recover, but tests revealed that the cancer was in her bones. Difficult times followed. But with professional help from Macmillan nurses and others, and support from friends, family and colleagues, the Armstrong-Frost family made the most of them. Although they lived for the next three years with Heather's impending death, they also lived with joy and a good family life. Life was "brilliant", says Tony. Heather slowly recovered from the surgery on her spine. She walked, gardened, got up the stairs of their house to say goodnight to the children and went to weddings and parties in her wheelchair. They got the summerhouse they wanted and abandoned duty visits to far-flung relatives, spending Sundays in their pyjamas at home if they felt like it. "I think we were living the way people ought to live," says Tony. "It makes you prioritise. And it enabled us to be honest with each other and with the children."
They had decided to defer discussion of her death with the children. "Our concern was how they would be affected at school by all the misconceptions floating around," says Tony. "Tom had already come home and said a kid had asked him how many cigarettes she smoked. We said it was a disease she had. It didn't seem to us there was the need to add the encumbrance of it being called cancer because we weren't hiding anything else."
Macmillan nurses became a vital source of practical and emotional help. "There's always something you can do to get the family through and out the other end still functioning," says Macmillan nurse Olwen Donald, who supported the Armstrong-Frost family from the time Heather developed the tumour on her spine. "It was a terrible blow when the cancer came back, but Heather got herself together - she went back to help out at school and kept busy. I think they realised life is very precious, and didn't waste any time."
Olwen Donald discussed with Heather and Tony what they would tell the children at each stage. "Heather would sometimes ask me how to put things and we would talk it over. I support families, I don't really lead them. Studies have shown that it's best to be open with your children and with school and neighbours. But whatever they decide to do, I go along with.
"Children often blame themselves if something goes wrong in a family so its important to re-assure them that whatever happens it's not their fault. And with all the focus on the ill person, their needs can get overlooked. It's important to set aside time to talk to them. Heather was very open with the children although she didn't feel comfortable using the word cancer with them. I don't think it's important, and you can overload them with information."
Olwen says that what children need from adults is honesty. "Once you go down the road of little white lies, it's difficult going back and children then begin to wonder who they can trust. Often, opposition to openness comes from the grandparents, in an effort to protect the children. But sometimes adults do it to protect themselves, because if it is open and talked about, adults have to face up to it as well."
She believes teachers and other professionals tend to make a better job of supporting children if they have come to terms with their own mortality. "If you can acknowledge that we're all mortal and you're not afraid to consider that, it makes you more at ease with someone who has got a terminal illness."
Tony got comfort from colleagues at Uppingham community college, where he still works in curriculum support. "School was the only place I could cry," he says. "It's a very close staff and everybody knew about it. They let me be what I wanted to be - angry or upset or whatever. I didn't come to work as an escape - it was just a place where I was comfortable." Management at the school gave him cover when he needed it and in the staffroom people seemed to know by instinct when he needed a cup of tea and solitude, and when it was time for an arm round the shoulders. Tom and Izzy had help at school too. Each of them had a teacher who had lost a parent at an early age and wasn't afraid to talk about their mother's continuing illness.
In late 1997, Heather needed another operation on her spine. She forced herself to walk immediately afterwards - she had developed an iron resolve and was determined to live until Izzy had started secondary school. In the spring of 1998, she was told she had a tumour at the base of her brain. The prognosis was bad. Heather and Tony realised, with Olwen's help, that they had to tell the children. "It was the only time we cried together," he says.
At this stage, Heather was staying in a local hospice. One Friday afternoon, after tea, Tony told the children. "They already knew she wasn't going to get better. I told them Mum's getting really ill and she is going to die. They were very upset, and crying. But there was nothing shock horror about it," he says. "This illness was part of our lives. We had the weekend together, and we all slept in the same room downstairs." They asked whether she would be able to eat and to hear them when they talked to her.
Heather came home on Monday, and the family began discussing her funeral. "I was worried that the children wouldn't be able to take that," says Tony. "But they latched on to the practical aspects, things that allowed them to take a role and do something." They played hymns on their recorders to help Heather decide which ones she wanted, and mucked about with the hoist that had been installed to lift her in and out of bed. Heather carried on being a mum in the ways that she could, signing their reading diaries even when the cancer had spread to her brain and her spelling was unreliable.
She died at home, as she wanted to, having planned with the children what she would wear to be buried in (jeans and a T-shirt), what she would take with her (her glasses and a plant identification guide) and where her grave would be - in the village churchyard, overlooking the Northamptonshire countryside she loved.
The night before, she had been singing along with the children to the video of Disney's Aristocats. "If it had to happen, it could not have been better," says Tony Armstrong-Frost. "It was the most marvellous example of how things and people can work together."
The children seem to have come through the experience as well as Heather could have hoped. They are grieving still, but not overwhelmed. Now, 14 months later, Tom, aged 10, goes through his memory box in the living room. Like the real thing, it is jumbled. He's kept what he calls "letters from people saying we feel sorry for you", as well as the obituary from the Rutland Times, his Cubs uniform and a first-prize card Heather won for her marmalade.
Although sad, he is able to talk about his mother and his memories. "I miss her most at bedtime," he says. "Because she used to come and sit on the bed for a while and we used to talk to each other."
Tom and Izzy agree that it helps to be able to talk to a teacher. "Sometimes you just need to tell someone all about it," says Izzy. "But it upsets some people quite a lot and they don't want to talk about it." Jake, just seven, speaks still as a child. "I liked it the day after, because we didn't have to go to school," he says. His older brother looks up and smiles.
'CHILDREN OFTEN COPE WITH THE NEWS BETTER THAN ADULTS'
Tricia Williams is a Macmillan counsellor based in the palliative care department of Poole Hospital in Dorset. She runs a bereaved children's support group and works with schools and teachers.
Children and adults are prone to misunderstandings and misapprehensions about cancer, she says. "Particularly with cancer, because of all the media coverage and discussion of genetic issues, children want to know more. They need to know they can't actually catch it and that it's not going to appear out of the blue. For an older girl, whose mum has ovarian or breast cancer, she needs to take some control and find out how it might affect her."
Besides worries about catching the disease, children want to know what has caused the cancer - often they associate all cancers with cigarettes - and the effect of treatment. Questions vary according to the children's age. "Younger children want to know, if we had done this or that would she not have got it?" says Tricia Williams. "At six or seven, children are still thinking magically and may believe they have caused the death through some thought they have had or something they've done."
Children recognise the permanency of death younger these days, at around the age of five, says Tricia Williams, getting accustomed to it by what they see on TV. But our real-life experience of death is ever more limited. "Death has been removed from society," says Tricia Williams. "We need to be able to talk more freely about death, bereavement and loss."
It is not only children who need to be better informed about cancer. "An education drive is definitely needed. I go to families where the parents don't know how to tell the children what is happening. They have their own fears about the word cancer. The stigma is still there and they want to protect the child. They don't realise children feel excluded if they're not told. Very often a child will respond positively to being told the truth. They may cry but they know what they're dealing with then. They often cope far better than adults."
Children don't necessarily get the help they need at school. "Teachers have their own fears and anxieties," says Tricia Williams. "There is a lack of information about the latest trends and research; people are often ignorant of that unless they have a personal issue with cancer and then they may tend not to talk about it for other reasons.
"Nobody sails through a diagnosis of cancer but there's so much more help around now as long as people can deal with it openly and honestly. We need to normalise the discussion as much as possible otherwise children and their families can feel banished to the land of the sick. The fear of cancer is gradually being taken away and the more it's talked about the better."
CANCER: FACT NOT FICTION
* Cancer is not one disease but many, all with some similar features but each with a distinctive character according to the cancer's type and location * There are more than 200 types of cancer * Cancer is a disease of the body cells, where the control signals in a normal cell in the body go wrong, resulting in an abnormal cell. Cells normally divide and replicate themselves as a process of renewal in a controlled way, but abnormal cells keep on dividing and this forms a lump. This cluster of abnormal cells is called a tumour. Some tumours are benign, or harmless, and often need no treatment. But malignant tumours - the cancers - can spread. They may also be dangerous because they can invade nearby parts of the body and stop them working properly.
* Causes of cancer include: smoking
over-exposure to sun
* Treatment depends on the type of cancer, but usually consists of one or more of: surgery to remove the growth; radiotherapy - to destroy cancer cells using high-energy rays; chemotherapy - strong drugs to destroy cancer cells
* Four out of 10 people in the UK will develop cancer at some time in their life. In the UK, 300,000 people are diagnosed each year
* Some types of cancer are easier to cure than others. More than 40 per cent of sufferers are cured. Even when a cure may not be possible, many people live normal lives with cancer for many years.
* Prevention - the risk of many cancers can be reduced by adopting a healthier life-style: do not smoke;
drink moderate levels of alcohol;
eat plenty of vegetables, fruit and cereals;
limit intake of fatty foods;
keep physically active;
avoid excess sun exposure (especially young children)
* Women should have regular cervical smears and be aware of breast lumps
* Men should check testicles for abnormal lumps at least once a month
Source: Macmillan PSHE resource pack
* Macmillan Cancer Relief has produced two resource packs on attitudes to cancer, based on national curriculum guidelines and with advice from teachers. The primary school pack - aimed at pupils aged nine to 11 - provides a week's literacy hour work. The secondary pack - for pupils aged from 12 to14 - is designed for use in PSHE. A free copy of each is available to all schools. Tel: 0845 601 1716, fax: 0845 602 3602.On March 10, the charity isinviting schools to help raise funds with a 10-minute sponsored silence. For details of the Hold Your Tongue campaign and a school registration pack, tel: 0845 601 1716