Thursday, 4 September 2014

43. Talking to teenagers about mum's cancer

My husband came home with a small bottle of Bach Rescue Remedy. These drops are said to be especially beneficial when you find yourself in traumatic or stressful situations.

No, it's not for me.

It's our children that need rescuing, and husband himself.

That's what his friend from Milan thinks, who ordered him to buy the stuff. It wasn't really a suggestion, as suggestions can be kindly and gratefully received and then shrugged off if needs be. Where this warm-hearted but rather insistent friend is concerned, a shopping trip is easier than shrugging.

Hence the arrival of the little bottle for the benefit of my family. Anyway, we figured that even if there is no need for immediate rescue, it won't do any harm, and it might come in handy if ever the house is on fire or Pig is lost.

My husband is still pondering where to get the particular variety of cancer-busting mushroom his friend from Milan has proposed for me.

Friends are definitely concerned about our children. How are they coping? Are they coping?

They seem fine! I tell them. We are keeping them informed and involved! They are taking it in their stride! Followed, inevitably, by stories of Owl. Most friends are relieved.

Not so the friend from Milan. Perhaps it's a Southern Europe thing? Half a century ago, the vast majority of doctors did not tell their patients that they had cancer. (Telling children about cancer? That question didn't even exist.) Things have changed in our part of the world, but I know there are cultures where things are different.

Whatever the reason, the friend from Milan sounded horrified at the thought of our children being told everything about my cancer.

This took my husband by surprise. He merrily explained how our older daughter had accompanied me to hospital for my chemotherapy treatment. This was meant to reassure her that the children are fine, but it had the opposite effect.

"She is only 14!" worried the friend across Skype. "She is too young!"

Now this is interesting. My reason for taking the 14 year old was not simply because I needed a minion to ferry drinks and snacks, but also because I wanted her to know exactly what was going on. Experiences can be much more powerful than words in helping people understand what is happening.

Not only that: it demystifies it. Much better for her to see me being injected with Red Poison (and, understandably, collapsing five hours later) than for me to Disappear To Hospital looking fine, and Return A Wreck. Plus, there's nothing like taking the fear and mystery out of Cancer Patients than sitting in a room full of Cancer Patients and their side kicks.

Such was the theory.

Is burdening teenagers with information about their mother's cancer too much for them? Some people certainly think so.

I am on home ground here, of course. Thinking about how to help people understand and cope with difficult situations is my job. I've even written a book about it, even though that focused not on children but on people with intellectual disabilities (which, I think, gets society even more worried, in any culture).

It's always been completely intuitive to us. It seems blindingly obvious to me that you need to talk to children about important things that affect their lives, including illness and death. In their own way, of course, and using words and concepts they can understand. I find that if I err at all, it's on the side of underestimating their intelligence and ability to understand things.

Sometimes, they have shown us the way and asked to be included when even I, with all my hospice training and my belief in Telling The Truth, was inclined to protect them.

When the 14 year old was three and her brother five, her godfather died. My husband and I told them that there would be a baby sitter so we could go to the wake, where our friend's body would be present in an open coffin. The children insisted on coming with us. We explained that they might not like it. The godfather would be there (but dead) and people would be crying, including ourselves, because we were sad that he had died.

"I want to come!" my son campaigned, his sister nodding vigorously at his side. "I want to see! I have never seen somebody dead!"

They came. And it was OK. Since they had asked to come, I thought that keeping them away would only give rise to frightening imaginations, as my small daughter confirmed when I tucked her up in bed later that night and asked her whether it had been OK to come along.

"Yes..." she said, considering. "But Mummy..." she added slowly and thoughtfully, "...I thought I was going to see bones."

Once I emerged from being utterly flabbergasted, I realised that her only image of death had been provided by Scooby Doo. How terrifying is that?

But back to the Cancer Information Question. Following the long skype call with Italy, my husband asked our older daughter about her need for Rescue Remedy.

How worried was she about mum's cancer?

"Well..." she said (still as slowly and thoughtfully as she did at the age of three). "I'm a bit worried. But it doesn't dominate my life. I'm not going round all day thinking, oh no, mum might die."

And yes, she too thought that coming to the Chemo Lounge was fine, and not at all frightening. "Quite interesting, actually."

"It's a serious question though," I added. "Because our friend from Milan is clearly concerned about you. Some people do think it's much better not to tell children everything, so that they don't worry. What do you think?"

She didn't have to think about this one.

"Obviously, it's MUCH better to know everything. Because then you know everything, and you don't have to worry about what you don't know."

Well, there we are. My thinking exactly, and I couldn't have said it better myself.

How universal was this view, though? If my work with people with intellectual disabilities has taught me anything, it's that you cannot generalise. You have to take your cue from people themselves. So, for the sake of completeness, I asked my other children too.

My 16 year old son was completely puzzled by the question. Is it a good idea that he is told everything about my cancer?

Well, of course it is. Because otherwise you'll just be left with lots and lots of questions.

Obvious, no?

I pressed on. Some people think that you shouldn't tell everything, in case children worry too much... Well, he thought, if that's their concern, then why don't they just ask how much the child wants to know? And take it from there?

Put like that, I wonder that there was ever a question in the first place.

My 11 year old daughter had a somewhat different response, though. She didn't like the starkness of the question. Should she know everything about me having cancer, or not?

"Isn't there something in-between?" she asked. "I want to know some things. But I don't want to go round all day, going oh oh oh cancer cancer cancer."

Fair enough. (It's one reason why she is not on the list of candidates to accompany me to the Chemo Lounge. For this particular child, that would be too much like "going round all day going cancer cancer cancer".)

After a moment's silence, however, she added, "But I do want to know everything that happens to Owl. I have to know about Owl and his cancer. And by the way, it's good he's got his friend. I think he needs his friend with him all the time."

Owl and Jokery
(And that was exactly her contribution. When her sister and I went off to the Chemo Lounge, she disappeared into the spare room with the fabrics and the sewing machine and the brain fluff. By the time we returned, she presented Owl with just such a friend, whom she introduced as Jokery. With a name like that, I suppose, there is no danger of getting over-serious about this cancer stuff.)

Having said all this, I am fully aware that having a mum with cancer may affect my children in hidden ways. They may not show us.

Children are experts at protecting their parents.

"Have you told the schools?" my breast care nurse asked. "No? You must do so. They may seem fine at home, but they don't always show it at home. Particularly teenagers."

We will take heed.

And yes, of course we realise that the changes at home must affect them in some way. Too often (in my view), they have had to consider my Poor Brain and my inability to cope with their conversation. Too often (in their view) they have had to help out more with the cooking and tidying. (We're planning to keep that one going. About time too. My future is bright.)

For the sake of honesty, I do admit to one enormous lie I have told my children. Sinterklaas.

Father Christmas pales into insignificance next to his Dutch ancestor, St Nicholas. It's a lie of national proportions. Come November, Sinterklaas even has his own TV news bulletin.

My husband thinks this is far, far worse than lying about Father Christmas, but the girls and I disagree. In fact, we think Sinterklaas isn't really a lie at all, because we make him real. In the same way that we truly believe Pig and Bear are real, and Owl has cancer.

Perhaps it is Sinterklaas who is to blame, ultimately, for having an Owl with cancer in our family. Because one year, his parcel contained an important little Pig, ready to sprinkle life with his magic and wisdom, setting a trend.

Sinterklaas, my daughter, and a wrapped-up Pig

1 comment:

  1. I adore Jokey Owl. What a fabulous friend to have!