On this day five years ago I was diagnosed with breast cancer.

Today five years ago I thought I was going to die a horrible death, that I would whither away as my father had done from the brutal disease too many succumb to far too soon. Five years ago I thought I was going to leave my husband all by himself to raise our daughter. Five years ago I thought I was leaving my little girl to grow up without her mom.

Clearly I didn’t! Because as my lovely oncologist said to me: “If you are have to get breast cancer then you chose the right one.”

I received my initial diagnosis from my lovely GP (yes, I was extremely fortunate to have an amazing, aka lovely, medical team) on 24 October 2013 and the next day it was confirmed. I recall saying to my surgeon (you got it: lovely!) that if the worst she was telling me was that I needed a mastectomy I would be absolutely fine, but if she was telling me that I was going to die and leave my husband and child… well that would not be so fine (or so lovely).

Fortunately it was the former.

The few days between the diagnosis and the operation were probably the worst days of the illness. The not knowing how bad it was, how far it had spread and what the general prognosis would be was almost debilitating. I vacillated between a paralysis of disbelief and an utter and unbreakable commitment to my self that I would be fully healed –  interspersed with despair, anxiety and fear.

In those few days I read like a demon. I consumed every e-book I could lay my hands on and made copious notes on what to ask the doctors; what to eat and not eat; supplements versus no supplements (check with your oncologist!); surviving cancer; and, most importantly, what about my daughter and how do I help her wade her way through it all?

An excerpt from my October 2013 journal. Trying to learn as much as possible

Our daughter was nine at the time of my diagnosis. A girl in her class had recently lost her mother to cancer, so the demon had entered my child’s world already, albeit on the periphery. Eric and I agreed that we needed to tell her as soon as we got back from having the biopsy. We wanted to help her understand in as simple a manner possible exactly what was happening and why. We explained that I was ill, that I needed an operation to take off the sick breast, and that until we had the medical results back, we were not sure what medicine I would need. I would be in hospital for a few days and then I would come home and need to rest. We explained that it was very probable that the medicine would make me sick and would make me lose my hair. (This was probably the most upsetting thing for her and when my hair did fall out she would avoid being around me unless I had a scarf or hat on, covering the billiard ball.)

At no time in those early, pre-op days did we say that I would get better and that I was going to be fine. Because that may have turned out to be a falsehood and we knew that we had to be as open and honest with her. It was important that what ever happened going forward she knew that we would always be truthful.

Her immediate response was one of rage. She became violently angry and refused to speak to me for a day. She withdrew from me and clung to her father. She expressed her fears via her anger. It was the only way she knew how to get the fear out.

A few nights ago her and I were talking about what it means to be five years clean, and we spoke for the first time ever about that period in our lives. She spoke openly about the anger and fear. How out of control she felt: she knew I was sick, but could not help being furious that I was sick. She told me that even as she was raging against me she felt guilty, as she knew I was ill.

I was astonished at how much she remembered. She recalled that there was tension, stress and sadness in our home. She recalled the day of the biopsy and seeing the plaster on my breast- even the colour thereof. She remembered wanting to go and live with her grandmother to escape the horror. But listening to her I realized that however frightening it must have been for her, we dealt with the diagnosis and outcome in the best possible way. Children are extremely astute and often wise beyond their years. I know now that if we had not been open and frank with our daughter it would have done irreparable harm to her and our relationship.

Talking to your child about your cancer is really hard, especially when you do not know the outcome or are not clear on the prognosis. It was important for Eric and I to be able to control the information so we knew our daughter would understand what we were telling her. We wanted her to understand that however difficult things were we could, and would, be together to overcome it all. I desperately wanted my daughter to know that whatever was happening and whatever would happen to me I would be truthful with her.

In this, I am thankful for the cancer diagnosis as it opened up a channel of close communication with my daughter so that when her father and grandmother were so suddenly and horrifically taken from us less than two months after my mastectomy, she already knew that I would always be open and honest with her and she could ask me anything no matter how painful and scary.

As children parents seem to be invincible and omnipotent … immortal. But avoiding the truth even with all its ugliness means that children will look for answers somewhere else and not necessarily get the right answers – much like sex education.

So, here are some of my thoughts on discussing your diagnosis and prognosis with children:

1. Figure out the best time to talk to your child – not when they are hungry or wanting to head off to play. Find a time that you know you will have their attention and a place where they are not too distracted. We took our daughter on a walk to start the discussion… she only told me last week that this was probably not the best idea as she hates walking and was highly irritated that her parents were forcing her to undertake this most unpleasant activity.
2. Speak to them so that they understand. Use age appropriate language but also use “real” words. Although words like cancer, tumour and mastectomy are hard and can be difficult to understand, they are a lot less confusing than “bump” and “eina (sore).” You want to be as honest as possible, so that if they overhear information – and invariably they will – it will resonate with what you’ve told them.
3. Tell them what is going on. Often we want to protect our children and our instinct is to not tell them what is happening in order to avoid scaring them. But children pick up on this and can feel excluded which in turn can lead to anxiety and uncertainty, making the fear a lot worse that it may well be. Tell them as much as they can process. If you tell them too much it overwhelms them, so try and listen and from that figure out what they need to hear. If you don’t know something rather tell them and then find out so that you can answer them. Before I started chemo we took our daughter to the oncology clinic and through the chemo room. To this day, even though she has a far greater understanding of what was happening than five years ago, she remembers it with something akin to excitement: the huge TVs, all the snacks, the friendly people, the lovely garden and the big, comfy recliner chairs. This 30 minute trip went a long way to helping her to understand as well as give her a greater sense of security as she could visualise where mommy was going for chemo.
4. Don’t avoid talking about the scary stuff. Children are a lot more resilient that we think, believe me. Cancer does not mean you are going to die. So make sure that you dispel any myths. At the same time don’t say “everything will be fine” when you don’t actually know 100% for sure.

Five years on my daughter and I are both survivors. My child has faced sadness, illness, fears, trauma and death. She has had to process stuff that many adults my age have never had to deal with. She is not a perfect child. She can be really bratty and is a typical teen. She still takes out her anger and fears on me as she knows I am a safe space. She is quick to utter a biting comment. She shows a brittleness to people and hides her feelings tightly inside her. She does not welcome new people into her life and struggles to connect with many. She affects bravado and a façade to hide herself.

But she is mine and I love her so dearly. She shows her love in a myriad of ways other children would not: She continually scans the environment for dangers to me; if the ground surface is unstable she will hold my arm as she knows that my balance is poor due to the damage done to my left leg in the accident; if I have to go down stairs she holds my hand to balance me. If we are out walking and I seem to lag, she continually checks back to see if I am tiring or requires her help.

She knows that my left ear’s hearing is not so great due to the chemo and she is always on the look out for a good body cream – dry skin being another remnant of the chemo. She still prefers to hug me on my right, as my left breast and side were so terribly sore for so long. She knows that I cannot have an IV drip or blood samples taken from my left arm and she knows that it is a struggle to find veins in my right.

She watches what I eat and if I am exercising enough. She knows that milk, sugar and alcohol should be avoided for cancer.

She strokes me when my tears roll on sad days and she holds me tight, tight, super-tight when I sob for her dad. She has seen me at my worst, my most despaired and my most frightened.

But she has also seen that I am resilient, I have overcome and I continue to thrive and grow.

And she knows that no matter what life throws at us we are together and we will deal with it as best we can.