Hi, I’m Liz. I’m 37 years old, married to a spunky guy, mother to 3 beautiful children (6, 8, and 10) and I have brain cancer. And I can tell you, brain cancer sucks!
My extended family has had it tough with this disease. My cousin Luke passed away a number of years ago after living most of his life with a childhood form of the disease. Then his brother also had a brain tumour removed recently and my eldest sister Michelle was diagnosed with brain cancer almost 10 years ago too.
My journey with brain cancer started at home on the 10th June 2021. That’s the day I had my first seizure and my world changed forever.
In the lead up, I had been experiencing a large number of minor yet ever increasing symptoms like anxiety, tiredness, losing feeling in my leg, a twitching eye, and generally struggling with life. I’d been trying to get on top of things, but nothing was working. Sound familiar? It sounds just like every other busy mum with a young family, right? I mean, how was I or anybody else supposed to know I had brain cancer!
But then, one busy morning at home getting the kids ready for school, my lights went out. I don’t remember anything for a few days after that, but what I’ve been told is that I was having my first seizure of many. It was a full body, proper brain reset seizure, and I was having it in the hallway in front of my poor kids. And I was having it over, and over, and over again.
My kids went into emergency mode. God bless them, I have to laugh, they got out the medical kit, the Band-Aids, vomit bags, and bandages. All the medical type things that they’d seen us use before and that they thought might help. My kids were my first responders in a long line of people who would save my life that day. Eventually, my son Kayden (8 years) called Dad and told him “Something’s wrong with mum, she’s on the floor”, and Dad (my husband Scot) supposed that I had just passed out getting out of the shower, which I had been known to do. But once our friends and neighbours arrived on the scene to help and realised that something dreadful was happening, everything kicked into gear. Thank you to my kids, my husband, my family, my friends and neighbours, the ambo’s, the nurses, Drs, and all the other hospital staff who saved my life on that first day!
Six days later I had brain surgery to remove a chicken egg sized tumour from the front of my brain. The tumour was so big that it was squashing all the other bits of my brain and sort of putting them to sleep, like when you sit on your hand for too long or wake up at night and can’t feel your arm. All the early indications were that the tumour was benign, which was a relief. However, two days later my world was shattered when the proper biopsy results came back, and I was told that I had a high grade malignant brain cancer. Then a few weeks later I was shattered again when I was told what that really meant. “Glioblastoma Multiforme” … whatever that gobbledygook is. I couldn’t even pronounce it when I was told it. I already knew there was no cure, so I was absolutely petrified. Then they said, “Terminal illness, less than two years on average, but we’re hoping we can get you three”!
At this point, there really are no words to explain the crushing grief, tears, snot balls, and shaking from the inside out that I felt. I wouldn’t have a clue what the doctor said after that. It was like somehow the words the doctors were saying changed in the air between their mouths and my ears and I all I heard them saying was, “you won’t get to see your kids grow up”, “forget about going to their weddings”, “I bet they won’t even remember you”, “your husband will find someone else”. It was my world being taken away from me. Just like someone clicking their fingers. My world was there one second, and the next second it had been taken away.
But I’m a fighter! Four weeks after surgery I started a course of six weeks radiotherapy and chemotherapy. I did everything I could to keep well. I ate well to have the best nutrients in my body and exercised lots to help get the blood flowing into my brain to deliver more of the chemo to the cancer and kill it. The Drs describe the treatment as ‘tolerable’, but I can tell you it’s certainly no walk in the park. I almost made it to the end of treatment but had to stop the Chemo early because it had destroyed almost all my platelets so that I had a big risk of internal bleeding. I was very sick, but I was fighting. I didn’t realise how bad it was at the time, but later my Dr let slip just how concerned they were … something like a change of underwear being in order. I think I might have dodged another bullet there, and during COVID too!
Starting radiation during COVID was terrifying for me as I was all alone in the radiation room. I would lay on the machine with my head firmly fixed down under a plastic mask so that I couldn’t move. Not knowing what to expect, the radiation staff soon made me feel comfortable and Scot was beside me or as close as he could be, even if that meant being in the next room, or waiting in the car due to COVID restrictions. Thank you to my parents who came to our rescue as we still had the kids but now had to navigate daily radiotherapy while being very ill as well.
Since that time, I’ve been feeling much better, but life is so much different. I still have seizures and I still can’t drive at the moment (Grrrr) which means I can’t do basic mum things for my family (Double Grrrr). I take lots of regular medications, I see Drs all the time, have regular MRIs and I take Chemo every month to keep the cancer at bay. I’m up to 18months of Chemo which I’ll take until either my body won’t let me, or it stops working, or until they find a cure, or if I decide enough is enough. Praying hard for that cure!
However, the biggest change to my everyday life is that I can’t think the way I used to. Brain cancer impacts your ability to think because there is this cancer stuff inside your brain getting in the way and mucking everything up in ways that are different for everybody. For me, I struggle with higher level executive functioning like planning, administration and decision making (funnily enough … all the stuff I was really good at! Triple Grrrr). It sounds strange, but I can really struggle to make simple decisions. For example, if I try to plate-up for dinner, sometimes I just cannot work out what food goes on what plate. It is incredibly frustrating! Other things I can’t do anymore is write this story by myself, filter out background noise, prioritise lots of people talking all at once, and juggle different things competing for my attention. All this looks like seizures at family Christmas lunch, or at church, or while out to lunch with my friends.
As a result, my husband does a lot to help look after me and the kids, and I have a support worker come into my home a few days a week to help me do normal mum things.
To get past it all, I have to remember that I’m young, I’m fit, I’m otherwise healthy, I’m fighting, I’m doing well, Drs don’t know everything (Sorry Drs, you guys are great, but I know you would agree), my scans are good, I’m winning, I’m praying and seeking God, I have a great support network, and I have a great family who I love and adore and I WILL be there for them in the future!
A special thanks to the Mark Hughes Foundation (MHF) for giving me the opportunity to share my story and for all the work they are doing to find a cure.
Thanks to my MHF Brain Cancer Care nurses Alisha and Elise. You ladies are tops.
Thanks to my many Drs who give up so much of their lives to help people, like the extra time they spend at work away from their own families, so that I can get some more time with mine. I see your sacrifice.
