Mark Hughes Foundation

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.

Dry July funds have enabled the Mark Hughes Foundation to continue supporting all patients and their families across Australia by providing all patients diagnosed with brain cancer a patient care pack, regardless of location.

Every patient can receive a patient pack, including information on the disease, a patient diary and our famous MHF beanie – which is a symbol of hope. No patient or family should have to go through a brain cancer diagnosis alone.

The funds also support the annual Hunter Brain Cancer Forum. The Forum is a day for patients, carers and their loved ones to hear specialists discuss a range of topics in relation to brain cancer. In addition to gaining further information and resources, the Forum helps patients build connections with other patients and carers going through the same journey. 

Michelle was enjoying life! A happy, healthy, busy life as a wife, mother of two, loving daughter, friend to many and a dedicated nurse.

She had a headache one morning before heading to a stressful day at the hospital during Covid in 2020. She thought little of it until the words on the patient's chart she was reading became completely unrecognisable. Michelle’s life was forever changed from that moment on.

2020 was a year like no other for me. This is the time when the whole world seemed to turn upside down and nothing would ever be the same again. This is where my story begins. July 2020. Also the year of the nurse.

There was nothing good for nurses in 2020 or for me personally. My name is Michelle, and up until this point in my life I was a busy working nurse, wife, mother to my 2 teenage children and friend to many. I had a very normal, full, happy and healthy life that was until I was diagnosed with brain cancer.

The Covid pandemic was upon us and life in the hospital was frantic, terrifying and uncertain. I was rostered on for a Saturday shift. I had a headache from the day before, but I had put this down to being stressed about Covid in the hospital and what I would be facing at work this day. It wasn’t unusual for me to start my day with a couple of Panadol tablets for a pounding headache, especially if there was any sign of stress.

By 11 am that day, I was reading patient notes, as is my usual routine, when I found I could not make any sense of the words I was reading. I turned the page but still the words were a jumble. I started to panic, wondering what was happening and turned my attention to the numbers printed on the patient bed- still I could not make sense of what I saw.

I rang home and spoke to my daughter- a wise 13 year old- she helped me calm down and confidently advised me to sit down while she her called her dad, Chris.

My husband wasted no time and was by my side before I knew it. Together we went to the ED of the hospital I worked in and explained my confusing episode. It felt strange to be in the hospital dressed in my nurse’s uniform sitting with patients, as I had become one. I had never needed the emergency department before. I waited to be reviewed. The doctor performed a range of tests and questioned me before informing me that I needed a CT scan. As I was feeling better by this stage and was able to make sense of words again, I felt this was unnecessary worry, and I should just go home.

I stayed for my CT scan, and was surprised with the worrying look on the faces of the staff when they asked me to come in and tell me the results of the scan. The doctors eyes welled with tears as she told me I had a lesion on my brain. I was going to need to stay in hospital and I was going to need surgery. I was told that my symptoms were the result of swelling on the brain and I had had a seizure. To say I was shocked was an understatement. I could not believe this was true and was happening to me.

Surgery was booked a few days later, and I had a craniotomy to resect the tumour and work out what type of tumour I was dealing with. The operation went as planned with no complications -except for Covid restrictions that meant my husband had to drop me at the front door of the hospital on the day of my surgery and my children couldn’t visit me while I was there. I couldn’t wait to get home to them. I just needed to see my neurosurgeon in 10 days for a review and the results of what they had removed. This was the real life changing event- when my surgeon informed me that the news was not good. I had a Grade 4 Glioblastoma. He told us I had a guarded prognosis and began to explain my treatment options. Chemotherapy, radiotherapy, sick and devastating- it was so overwhelming. My husband and I were in shock, my heart dropped to the floor and my sunshine dimmed. It was all a blur for me. We left his surgery and had no idea where to go and who to tell or what to do. We sat in our car just shocked at the news. I was wondering how I was going to tell me children who were waiting for me to call them. My mum was waiting too- it broke my heart to tell her- I know it broke hers too.

Half an hour after we left the surgery I got a call on my phone from one of the MHF Brain Cancer Coordinator nurses who spoke with us about what needed to come next. Who I would see, options I had, and how she would coordinate my treatment over the coming months. I felt real support and care. She gave me her number and told me to call with any questions or concerns I had.

Shortly after, I started radiotherapy and chemotherapy. The MHF nurse was there with me at every meeting and every step of the way as I navigated this strange new world of doctor’s appointments and oncology treatments. I had 6 weeks of daily radiotherapy and intense chemotherapy. Radiotherapy finished and chemotherapy continued for another 18 months after this.

All the while I received the best care. I received so much support and love and care, and found the MHF was there for me in my darkest time. I was helped to stay positive and became determined that life would get back to normal, albeit in a different kind of way. 8 months after my ordeal began I went back to work, this time as a nurse, not a patient.

Today I am pleased to say that I am well. I have a brain MRI every 2 months and I have been told there is no sign of the tumour. I am so thankful for this.

They say that every cloud has a silver lining. Today I have a new perspective. I am a better nurse – I have a new understanding of patients and the care I can give them. I understand how life can change in a moment as I have been there too. I recognise my blessings and am thankful for these. I am surrounded by love and friendship and blessed to have a beautiful family. I couldn’t ask for anything more.

Thanks to your fundraising, you’ve helped fund our Tamworth/Armidale Region Brain Cancer Coordinator position for the next 12 months.

We are now also able to provide all brain cancer patients across Australia with a MHF care pack.

Brain Cancer can be a lonely journey for patients and their families. The Brain Cancer Coordinator is with patients every step of the way, delivering personalised nursing care tailored for each individual patient and their families.

Every patient is also provided with a patient pack, including information on the disease, a patient diary and our famous MHF beanie – which is a symbol of hope. You have now enabled us to continue our support of patients and their families, and expand our program across Australia by providing all patients diagnosed with brain cancer a patient care pack, regardless of location. No patient or family should have to go through a brain cancer diagnosis alone. The MHF patient pack is a symbol of hope and support for patients and their families.

On behalf of the Mark Hughes Foundation we would like to thank you for your support and contribution to making a positive difference in the lives of people living with cancer.

At the age of 22, I was in the prime of my life. I was into my second year as a registered nurse, working within a very busy paediatric unit. I had the most amazing family supporting me. The most amazing friends (this also includes the amazing women and men I was lucky enough to work with on the paediatric ward). I believed I was invincible.

The symptoms first occurred around June 2020. I was a very busy woman, working multiple shifts at the hospital, travelling home to renovate my room, looking after my house in Armidale and travelling. I began suffering from headaches, followed by absent seizures.

It’s the strangest thing, I could tell something was definitely not right with my health. However, I continued to brush it off until the 3rd of November. I was on a morning shift at work, it was a very busy and stressful morning, I was even asked to do a double shift.

All I remember was waking up in the emergency with nasal prongs in my nose, a sore tongue and feeling very sedated. My initial thought was to get out of bed and get back onto the ward because I knew I had a double shift pending. Instead, a nurse came and explained that I had a tonic clonic seizure, lost consciousness and crashed onto the ground.

The nurse in me started thinking of the causes. I straight away put it down to epilepsy. However, I had a CT scan, and much to my disbelief, it was a very large brain tumour located on the frontal left side of my brain.

After being flown to John Hunter Hospital, the neurosurgeon Dr. Mitchell Hansen reviewed and planned an awake craniotomy for the 24th of November. News spread very fast of my diagnosis and I was overwhelmed with so much support and love. The awake craniotomy removed the majority of the tumour. It was my very first operation, so of course I was terrified but I was in the best care and the best hands at John Hunter. This is when I first was introduced to the Mark Hughes Foundation through the wonderful Nurse Alisha. It was so overwhelming but she spent time answering all my questions along with providing information and a bag of goodies. Was such a fantastic support during my stay at John Hunter Hospital as well as when I returned back home.

The following week, I was to find out the pathology of the tumour. The neuro surgeons rang on Friday and delivered the devastating news. Traces of grade 4 glioblastoma were detected. I was devastated. The thing that really got to me was seeing everyone I loved in emotional pain because of me. It was a very hard pill to swallow.

I met two wonderful oncologists in Tamworth, who planned my radiation and chemotherapy. I also was allocated a wonderful Mark Hughes Foundation Nurse in Tamworth Natasha, who was my guide to the disease and the treatments. Making appointments, checking in on me during my treatment, as well as in between my treatments. Natasha along with Alisha have become a lifeline to get me through the treatment & beyond. I underwent 6 weeks of radiation in January (33 Radiation treatments), and I’m currently on my 4/6 monthly chemo treatments. I also had a second craniotomy in April at John Hunter Hospital to remove more of the tumour.

I am so grateful for absolutely everyone who has been involved during my diagnosis. In particular, my mum Theresa, who has been at every appointment, every hospital trip, every radiation and chemo treatment. She has held my hair back when I have been unwell, held my hand in the times I broke down and gave me the reassurance that I am not alone in this battle. There is absolutely no way I will ever be able to repay her for the love and support she has given me.

I also have to mention Ben and James. Although they didn’t think what they did for me was that “big of a deal”, they opened their doors to us, gave me a bed to sleep in, made sure we were comfortable and had everything we needed whilst down in Newcastle, not to mention the time they drove all the way to Maccas to get me some hot chips in the middle of the night. Two of the most genuine people who I am so grateful to have by my side.

The care I have received was thanks to the Mark Hughes Foundation (MHF). I wouldn’t have received the care I have been given, nor the guidance of the nurses if it wasn’t for the MHF. MHF is fighting for research and eventually (hopefully soon), a cure for brain cancer.

Recently, I was on a flight to Armidale and remember spotting the beanie before turning to my sister (who is obsessed with NRL) and asking if it was Mark Hughes. It was! I was fortunate enough to meet and have a chat with the wonderful couple behind the foundation, Mark and his wife Kirralee. They are both so dedicated and committed to the foundation, whilst being the most genuine and humble people I have ever met. What a huge tick off my bucket list. To meet a Celebrity! Mark Hughes, a person who has made such a major impact in my life. I do apologise Mark; I’ll still be cheering for Manly Sea Eagles!

If anything, it was the reality check I needed. It taught me to live every day like it’s your last. Don’t ever hold back, don’t be stuck in the past, don’t hold grudges, be happy and live for now. Surround yourself with the ones you love. I for one believe in positivity and have shown this always, along with my bubbly personality.

The most important lesson, go to the doctors if you’re unsure of your health, if something out of the normal is happening. Get a check-up, don’t leave it till it’s too late.