I pride myself in how I describe medical procedures to my kids. I can make them sound almost fun – like MRI’s, for example. I recorded the sounds of the play therapy MRI machine and then proceeded to make up this dance to the whoosh-whoosh, beeps, bangs and booms. It’s something like techno-crossed with robot moves with a dash of heavy metal head banging thrown in for good measure. I call it the “MRI Dance.” I find it hilarious and so do my girls, except that for some reason Hana won’t let me do it in the room while she’s having her scans. I think perhaps she’s beginning to get embarrassed by me now.
When it came down to telling Hana that she had a brain tumour two years ago, I also think I did an excellent job. “You have something in your head that shouldn’t be there called a brain tumour – but it’s OK, you will have a operation to take it out and then your headaches will go away.” And then I made up a song about her going to sleep and waking up with the headaches all gone and she pretty much took the whole thing in her stride.
So what about two weeks ago when I found out the cancer was back? I bet you’re expecting that I did a great job of it, right? Made up a song and dance about it? No. Unfortunately this time I did a crap job of breaking the news, this time I just didn’t have it in me to pretend it was O.K.
Hana has had headaches daily since her initial surgery, so we live with these. But whenever a scan is approaching I get ‘scanxiety’ that, this time, the headache is due to tumour regrowth. Hana would complain of a ‘really baaaaad headache, muuuum,’ and I’d go ‘hmmm, let’s hurry up and get that MRI hey?’ So I was already unintentionally planting seeds, in her mind that the severity of her headache could be due to tumour regrowth. Is that a good or bad thing to do? As a mum should I be protecting her from that, keeping my fears to myself or should I be sharing them with her? It’s a fine balance between being realistic with her about the life-long risk she has of tumour regrowing versus protecting her fragile, innocent little head and allowing her to live something resembling ‘normal’ in-between.
‘Has she had surgery before?’ The radiographer asked, popping back into the MRI room to get Hana ready for the Contrast injection. ‘Oh yeah, she’s had enormous surgery,’ I explained, ‘She had a brain tumour.’ She nodded, ‘Was it over the pituitary?’ ‘Yep,’ I said, now suspicious, very suspicious. What hell has she found above the pituitary? I exhaled. The results couldn’t come fast enough.
Two days later the results were sitting on Hana’s neurosurgeon’s desk, the receptionist told me she had the results and that he would look at them today and then she would call with the action plan.
‘Action plan?’ I relayed to my husband over the phone, ‘What action plan? The plan was that he’d call us with the results because if it’s clear, he said we won’t have to go in again!’ I kept myself busy all morning, itching to do the 45 minute drive to the hospital to look at the results myself.
That afternoon I took the girls out for a walk, we popped into Smiggles and they chose the fluffy blue tiger face school bag they both wanted for school this year. In their new school there is no uniform and they are ecstatic that they can have a fluffy blue tiger face backpack. We were all so excited about starting this new school, it was going to be a new start, in a new leafy area and we would be moving to the edge of the Bush (in pursuit of brain healing, health and wellness). It was going to be a new beginning for us all.
My phone rang on the walk back. I’d put it in my back pocket so I would feel it vibrate if it rang. There was no way I could miss a call when MRI results were due.
‘It’s about your MRI,’ I hushed the girls as I quickly answered it. They silenced quickly, used to important phone calls. The only sounds left were the cars racing down the road and the gaggle of international students, mostly Brazilian, leaving their english classes for the day.
I held my breath. Please please please please be clear.
‘Hi it’s Kate,’ the receptionist said.
I don’t like that…that’s not a good start, surely she can’t give us the all-clear over the phone? He said he’d call us…
‘Dr *** would like you to come in tomorrow to discuss the scan.’
My stomach flopped and my legs instantly went weak. Before I got to ask why she continued, ‘Because, yeah, they found something in the scan.’
So it’s back.
It’s come back after only two years and after paying a enormous price for the aggressive surgery that was supposed to reduce the chances of it reoccurring. Severe hypothalamic obesity, life-long, life-threatening obesity for only two years without cancer??? I dimly make arrangements to come the next day, my world beginning to slip away from around me. The future with the blue fluffy school bags, a house on the edge of the bush, health and wellness, brain healing, they were all beginning to spin and spiral away from me, sucked up to the sky, out of my reach. The happy things I thought we could have, the happy things I felt like I’d earnt. And the sickening feeling of despair and despair’s twin sister – stone cold loneliness – began to descend. No amount of Australian sunlight can brighten up the darkness these siblings bring.
I hung up. I couldn’t make this look bright. I couldn’t make light of it. I couldn’t pretend even that this was going to be OK right then. Everything was being snatched away from us just when we were so close to having a better life. Both girls looked at me, Hana her worry showing already; she’s developing the art of reading my phone calls.
‘What mum?’ she asked, uplifting her beautiful little round face, blue eyes reflecting her concern.
‘I’m sorry baby.’ I drew her to me, my mouth and face twisted with the bitterness at having to tell her. ‘I’m so sorry. But they found something on your MRI.’
‘Found what mum?’
‘Well… your tumour might have come back.’
Then her face screwed up, ‘But I don’t want my brain tumour back,’ she began to cry instantly. And I knew that I’d messed up. Totally screwed up how I’d conveyed this to her. I should have played it down, should have said in a light, funny voice ‘Mmm they’ve spotted something in your scan – we better head in tomorrow to make sure it’s not a sneaky cashew nut hiding in your brain (because you eat so many of them, hahaha).’
‘Look,’ I squeeze her tight, trying to make up for revealing my sadness, ‘We’re going in tomorrow to see what it is. It might not be anything we need to worry about-‘ Oh dear God it was too late for that. Why hadn’t I just thought before I’d said ‘I’m so sorry?’ of all the stupid ways to break bad news to an eight year old, you don’t say ‘I’m so sorry baby.’ Stupid. Stupid.
And then Maryam started bawling loudly, ‘But tomorrow is horse riding!’ She’d been looking forward to that all week and now she’d have to miss out, again, because of yet another medical appointment. ‘It’s ok sweetie, I know.’ My heart now aching for her and the life she’d had to live because of her sick sister. ‘We’ll make horse riding another day.’ Then I add, ‘Don’t worry about Hana sweetie, she is going to be fine.’ It was typical of Maryam to hide her fears for her sister by pretending she was upset about something else.
‘I’m NOT worried about Hana,’ she yells and bawling even more loudly, ‘I just want to go h-h-HORSE riding!’
Both girls were sobbing as we waited at the traffic lights, my useless, helpless arms around them both. A couple of women were at the crossing next to us, glancing over and I felt the disconnection return. I’d felt this sense of disconnection for over a year and a half after Hana’s surgery, a feeling that we existed on a different plane to everyone else around us. A bubble of suffering that set us apart. After the lap band I’d finally felt myself re-integrating with human’s around me, making eye contact on the street, caring about people that I spoke to but already the disconnection was back, like a switch had been flipped. I avoided eye contact with them. I’m not like you. My world has been turned upside down again.
‘What WILL happen if my tumour is back?’ Hana wiped away tears, trying to be brave as we walked the last one hundred metres home.
‘I don’t know yet, but maybe radiation baby,’ I said.
‘But I don’t want to miss any school!’ She protested loudly, ‘I will do radiation but maybe in one year, or in two years after I’ve gone to school for a while-‘ She burst into a fresh fit of sobs. I scooped tear-soaked Maryam into one arm and placed the other around Hana’s shoulders: The Comforter. All I wanted to do was collapse on the ground and wail with them.
My phone went again in the lobby, it was my husband who had been trying to chase up the scan results that morning:
‘I haven’t had chance-‘ He began,
‘-To ring yet, lunch was-‘
‘Habibi!’ I said louder this time.
‘-so busy and-‘
‘LISTEN!’ I raised my voice almost to the point of shouting and he finally quietened. ‘I’ve spoken to Katie. They have found something on her scan and we need to go in tomorrow.’
‘So we’ve got regrowth then?’ He said finally.
And I’m reminded of that phone call two years ago from the ED:
‘She has a tumour…’
‘Tumour’ he relayed flatly, the playground silent, only the wind whistling down the phone and I could hear the expressions on their faces in the silence that followed.
Two weeks on things have been intense as we have conducted our own research into the best possible approach for this. Our dining room table is filled with studies we’ve gleaned from PubMed searches and my iPad is congested with open pages of endless Google searches. We have also been contacting Oncologists, Neurosurgeons and Radiation Oncologists from around the world, reaching out to get as many opinions as possible on the best action plan. What is making things muddy is there is a clear division in opinions on what should be done. It is up to us to amalgamate these opinions ourselves, throw in the research and come to a conclusion we are intuitively happy with – we are now a little closer to formulating a plan and I’ll keep you posted on that.
Thanks for reading and for sharing our journey, if it’s your first time here you’ll find the rest of Hana’s journey under Brain Tumour meanwhile, check in with me on Facebook if you can, it’ll be nice to ‘meet you.’