Like a soldier, finally home from the war, only to hear the sirens of battle again. The prospect of going back into the trenches of childhood cancer strikes a paralysing fear into the hearts of every parent who has faced the beast with their child.
This time though, there is no bliss in our ignorance
There’s none of that blind hope that our child may be different. May cope better than the average, our child might be part of the 3 percent or less without significant lifelong side effects. We are brutally aware that luck favours no one in these trenches.
My dear friend is heading back into the trenches.
She is grasping the tiny hand of her now 7-year-old, 3 years after their first battle, and walking back down the corridors we both know far too well.
If I could, I would strap on head-to-toe armour, and I’d slide into those trenches with her. But I’ve lived in that world, and this is what I know. No one can walk in the trenches with you.
They can be an army at your back. They can be your biggest cheerleader and a place of comfort and kindness. But the only people in the trenches are you and your family.
What I know now that I didn’t know then, is the size of the planet. This is my advice to myself should I ever hold Lara’s hand and walk into the flames again.
It’s also a love letter to my friend. How I wish your story had a different plot twist.
There are no good words that could give you peace for this next battle. I’ve thought about what I would do differently, going back in, and what I would do again.
It isn’t advice because your shit show is different to my shit show and our pain is not the same pain. But these are the words I do have, for what they are worth.
May you have an Army at your back
May you find moments that aren’t on the bottom of the shower where you can look at your pain and say ‘I see you’ and spend some time with those feelings
May you find trust and hope
May you find comfort, even if that can only be in the form of vegemite toast and a very strong coffee
May there be glorious highs
On the days you just can’t do it, may you find the privacy for a quiet childlike tantrum
May there be grace and beauty
May you punch in the face anyone who believes ‘everything happens for a reason’ or kick in the butt those who use any version of the phrase ‘silver linings’
When Lara began treatment for Cancer, I began becoming a pretender. For the first time in my life, I began pretending. I’d say to people ‘we’ve got this’ when I really wanted to say, ‘this is unthinkable’
I’d swan into the children’s oncology ward and say ‘just here for a top up’ when I was devastated that we were, yet again, pumping poison into our daughter’s heart.
I pretended for Lara, and for her brother Ruari. To be a parent of a child with cancer is to lead them, lend them your optimism, lend them your joy and your humour, and show them a way of living through the pain and the grief. To let them have a joyful childhood, with cancer.
Going back in, I would pretend for my children.
Again and again, I would pretend for them.
During Lara’s treatment I also did a lot of pretending for my friends and family, and I would not pretend for them again. I would pretend that I was coping. I would pretend that we were OK.
I realise now that most of that pretending was to protect others from my pain. Protect them from feeling uncomfortable, protect those who loved us from my burning hot pain.
That pretending came at such an enormous cost. It cost me connection, genuine and honest connection to those people who loved me, by not letting them in. It cost me help.
Genuine and honest help can’t possibly be given when I appeared to be winning at the coping Olympics.
I would not pretend for my friends and family again.
Pretending robbed me and robbed them of a genuine and honest relationship.
Not pretending means that I would have to curate my friends like precious jewels. I would forgive them when they fall short. For some people talking about childhood cancer, and not even the grim stuff, will be the hardest part of their entire year.
These people are not a good member of the army, BUT it doesn’t mean they are not good people. It doesn’t mean they are not good for me.
Going back in I’d set some epic boundaries around the expectations I have of my friends and family. Those who can’t talk about this, that’s OK.
They may be a welcome distraction for a laugh and a drink when I want to forget, but I’d protect myself against their reactions and not share my hard stuff with them.
Going back into the trenches, I’d gather my army.
I would assemble the troops. Find my people. I would find those one or two friends who can hear the hard stuff without burdening themselves.
They are often people who have waded through a shit show themselves.
They are people who can listen to the rage and the tears and the tantrums and know that often it’s not about finding a solution. Often the salve is to rage and cry and tantrum.
If I were to go back into the trenches, this would be my battle cry. Protect and prioritise.
Protect myself – I’m no good if I’m no good. Prioritise my family.
I would build myself some epically strong boundaries. I would go into it knowing that I am protected against the worst of the controllables.
So much of what you’re about to embark on is outside of your control. The thing is, when you’re a rookie, you don’t know what’s coming. You, my friend are not a Rookie – going back in, you know what helped soothe and what reinjures you.
Prioritise what soothes and protect yourself against injuries.
This is actually something my sisters and soul sisters did outstandingly well, and I have kept every one of them. I would send out the battle cry of ‘plot twist!’ which often referred to a hospitalisation.
One of my sisters would collect my son and keep him feeling loved and drop him to school and activities while Dave and I cared for Lara and our work.
My other sister would come over and make order out of the schemozzle my house was inevitably in. She’d make sure when we came home from hospital or dashed home to get clean clothes that the clothes were clean and in the cupboards, and the house was tidy. I cannot describe how valuable a tidy house was to my very untidy mind.
And my soul sisters, they kept my business afloat, they would bring me sushi and sit with me, they visited Lara’s hospital bed. These women and quite often their husbands saved me again and again.
I’d be open about what I needed from what people.
I would give every person who loved me and wanted to help a copy of ‘The Ring Theory’. I would make sure they understood the language so when I said ‘You’re in my ring’ they knew that this means ‘You are burdening me with your own pain, please see someone within your own ring or a bigger ring to help you with this, because my plate is too full’.
I would make sure they knew this didn’t mean I loved them less or was angry at them – it simply meant I couldn’t today.
Feel my Feelings
What I understand now that I didn’t know then is that I can run from pain and anger, but I sure as hell can’t hide from it. I know now that the Body Keeps Score, and if I don’t find ways to complete the stress cycle, if I just continue to bury it deeper and deeper, my body will get sick beyond the telling of it.
I would find space to grieve and feel pain and anger. I’d find spaces for childlike tantrums. I would forgive myself these feelings because I now see them as strength, not weakness.
I wouldn’t try to be above my feelings or think myself out of them.
On the days that it’s possible, I’d schedule my racking sobs.
This time, we know exactly what we’re in for, what we’re about to ask our child to do.
We know the impact it has on our relationships, our own health, on our other children.
My darling friend. You may be alone in that trench, but you will never be alone in that room.
In that room is every person who deeply loves and believes in you.
May you feel us holding your hand. When you need to stand tall, feel our hands on your back helping you up. When you make time for your pain, may you feel each of us placing our arms around you.
On the days the load is simply too heavy, may you be able to give it to us, even if just for some vegemite toast and a strong coffee to refuel you for the day ahead.