Mummy, what is cancer?

When I was first diagnosed with early breast cancer back in February 2008, my daughter wasn't even 1 year old. Obviously, she couldn't talk and I didn't feel the need to explain to her what was going on. The odds of survival were extremely high too. And my mum stayed with us for pretty much the whole treatment, so my little daughter did by no means feel left out on getting attention. She did, however, look at me strangely for few seconds, when I walked into her room with shaved head after my chemotherapy treatment side effects kicked in....
Almost 3 years on, in December 2010, when I was diagnosed again, all was different.
This time, it was secondary diagnosis. That, comparing to primary or early, is in itself much more serious. The secondary cancer means advanced, the one that has already spread (or metastasised) to other parts of the body. The odds for survival are much lower... In many cases so low, that people get prognosis of only few weeks to live. In my case is an average of 2-3 years. Well, luckily I am not the average person. I know I am extraordinary, as all the happenings over the past year have shown and confirmed and the way I feel right now (which according to statistics would make me either 1/2 or 1/3 dead), is nowhere near ... If anything, I feel at least 1/2 better than a year ago. On all levels, that is. And for me, the only way is up!
Anyhow, my daughter was nearly 4 years old at time of the secondary diagnosis, and by that age, kids know what's going on. They, in fact, know much more than we give them credits for.

So, how do we tell a child about cancer?
How do we explain what cancer is? Or, that there is a chance we may die way earlier than expected? Or, that we may get really sick before we get better and also that there is a chance we might not get better? And, we hear stories of people dying of cancer every day...

It was horrifying. For me, just the single thought of the possibility of me not being there for Olivia growing up was unimaginable. I can let go of absolutely anything in my life but her. She represents completely everything I've ever aspired to achieve. She is my very own masterpiece. A perfection. The biggest teacher I've known or had. Pretty much indescribable.
So how do I tell her what is going on?
I just couldn't, really. It took me few months, a few books, a 10 day cancer retreat and quite a few sessions with my counsellor to be able to talk to her about it.
And this is almost exact conversation we had:

"Olivia, I have to tell you something"
"Yes Mummy?"
"I am very very sick.... Even though I don't look like I am... but you know this back pain I've had for a long time, the one that makes me unable to lift you, and carry you and run around with you... It's a very serious illness. Many people die from it. But I am doing everything I can to get better. I am not going to die, not just yet, but if I do, I promise to tell you. You will be the first to know"
"So, Mummy, when I grow up, I won't need you anymore"
"Yes baby, do you want me to die then?"
"No, when you're old." She said with a smile on her face.
End of conversation.

Although I didn't mention the word cancer, I felt good to openly discuss the death. But I also felt overwhelmed by her response. She was not even 4 years old, but yet she's already created an image of parents being old before dying.
It did feel good to let it out though.

After that initial conversation, we had a few more through the year.
We spoke about death, but only if she started. She pretty much sensed the connection between old and dying and usually started talking about death when she watched a movie with someone dying or saw an old person.
She also often started the conversation with:
"So, my grandparents are old..." and I explained that sometimes people stay old for a very long time, being old doesn't necessary mean dying straight away. Sometimes young people die, too. Sometimes even babies.
One day in the car, when an old person was crossing the road, she again highlighted how that person may die soon. And again we went through the explanation, ended up with: the animals die, everybody dies, sometimes even kids or babies... And she said:
"Mummy, what if I die?"
"That would break my heart, baby. It would make me very sad"
"And if Daddy dies, I would be very sad." she responded.
"Of course you would be, darling. But you would be OK."
"If you die, that would make me very sad"
"Yes, baby, it would be sad, but you would still have Daddy to love you and look after you and many other people. Even if both, me and Daddy die, you have your 'Godparents' to look after you, be a part of new family, together with the two new sisters (*her nominated legal Guardians have two daughters, her best friends). You would be sad, of course, but you would be looked after, loved and taken care of"
"Yes, but I would miss you so much" she replied and I could see her thinking away a few moments still.
"Of course you would, darling..."
End of conversation.

On another occasion, quite a few months further down the track, she asked me:
"So, Mummy, how is this thing that you have called?"
"Oh, you mean this, what makes me sick?"
"Yes"
"It's cancer"
"Ah, cancer..."
"Why are you asking that? Did you hear anyone talking about it?"
"Yes"
"Who?"
"I'm not going to tell you"
End of conversation.
And so the 'cancer' word was out.
And my husband told me they had a conversation about my cancer while going for a walk. Olivia explained to him exactly what she understood my illness was. When they returned, we had a brief family conversation about it, all present, so Olivia knows there are no secrets. We are open to share and discuss with each other. No stigma attached.

On one occasion, after I was hospitalised a couple of times (after my brain surgery and after my collapsed vertebrae incident), she surprised me with the question:
"When are you not going to be sick anymore?"
That was hard.
How can I explain? So I explained (as I was just about to start chemotherapy) I might get even sicker before I get better, but set a hopeful goal of possibly feeling much better by the end of summer, after her Birthday.
It made me think. I wish I could set a date. I wish life with cancer had a defined positive deadline.

Another, to me, big issue was the hair loss. How is my daughter (whose hair is beautiful, lush, long and wavy and who idolises princesses and Barbie, and all story - book characters with super long hair), how is she going to handle her Mummy having no hair?
She took it simply. And as my hair is thinning and I complain about my 'bad hair days', she looks at me and tells me I look pretty anyway... Oh how I love her.
Even though she told me she didn't like the short wig and her obvious preference would be a lush long, princess-like one, when the 'no hair' stage occurs, I know she will accept me and show her love just the same.

I believe it is the most important to be 100% open, honest and discuss all of the awkward and unpleasant options that may occur in the future, regardless of having cancer. I want my daughter to know I am honest with her, no matter what. I want her to know she is loved and she will be loved, no matter what.
I understand that cancer has a horrible association with death attached to it and I know that she will (if she hasn't already) hear from kids at school things like: 'your Mummy has cancer, she will die'...
And when that happens, I want her to know what is really and truly going on, to be educated about the disease, about the progression and to know how to reply with confidence, to let her feelings and thoughts out clearly and to talk about it openly with myself and people around her.

Although there are moments I feel my now almost 5 year old daughter has had to grow up too fast because of my cancer, my advise to anyone talking to kids about any significant events of life wouldn't change: be open, be honest. Talk to kids, but only if or when they are open to a conversation. And be open to continue the conversation whenever they start it, because they do start it, even though it can happen at the most inconvenient place or time.
Kids are way too precious not to be 100% open to and honest with, and they are so incredibly intuitive, even if we think they don't know what's going on, believe me, they do! They know much more than we could ever possibly imagine....