Sharing My Story | Part 1

I’ve been unsure whether to share this, whether sharing is more something that will be viewed as something other than I want it to be.

That being just sharing my story.

This is an “Open Letter” and “journal’

For a while now – I’ve had headaches and have just kept pushing. There was always something else or someone else that I wanted to give my energy / time too, & I always just figured out a way to ‘work around’ how I was feeling.

The effect of this was – I did push through.

But not without crashing in the End.

My first time at noticing my headaches was when we were in the USA, for Bella’s SDR surgery. I put it down to stress and how I was projecting being brave and only focusing on a positive outcome- that was taking its internal struggle in me. Then I noticed more headaches around my 40th, then a little more during big training days. Then it pushed harder when on a trip to Bali in December – I remember that headache was intense and went for days, but I didn’t say anything. Just put it down to stress releasing, and coming down to a relaxed state as we were finally on a holiday & my brain needing to catchup to what relaxing was truly about.

The next was a trip to Perth, not far off the back of the travel to Bali. The headache was even more intense & again I put it down to putting too much on my plate. Just all the OCD touches I add to life – Christmas, New Years etc.. then planning another trip – making all our wardrobes match, clothes for every occasion, fitness & nourishment packing, surf / beach packing, wedding guest packing.. plus sitting my final 2 exams for my Sports Nutrition Qualification whilst there. Then on top of that trying to be human and forge through how I was feeling & not let it show.. I vomited on some days, would be grumpy AF, & just didn’t want to explain things to anyone as I didn’t want to think it was a sign of me not coping.

We retuned from WA, I passed the exams with top marks, I kept training, doing life & pushed through a headache that never seemed to leave.

That next weekend I called a mental health day for me – didn’t go to baby shower, stayed home & stayed in pjs. All for 24 hours.. but I couldn’t help but pick up my whits and Push on soon again. I was fine – I didn’t know otherwise.

We then had a trip to Melbourne to see Bella’s Neuro who had flown over from the USA. That day the flights were terrible, we had an early flight – 630am, but due to storms we were still on Brisbane tarmac at 1230pm. When we arrived into Melbourne, my head was pounding. The flight was hot with no air conditioning and no meals – so I put it down to that. We needed to be at the dinner with Bella’s Doctor and the delay didn’t get us into Sydney to our hotel till 5pm. I pushed through, and Bella was amazing.

I was so sick that night, I popped on a in-house movie for Bella and fell asleep in parts to try restore. The rest of the trip was hard – as I just had a feeling now more than ever that something wasn’t right. But this was also a trip to watch our American Girl Celeste play her last game for the 19/20 season for the Roar. So the rest of the tribe had flown down and we were having another mini break. Bella had passed her examination with Dr Park with flying colours, and now we were set to watch our girl Cel play what was to be her last game of the season.. plus as an added bonus I was also catching up with a school bestie and her gorgeous family – Tonika. So I pushed on.
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Then there was the trip home, which resulted in me shaking, feeling so sick. Sleeping was hard, standing felt like I was in a boat, my head felt like it was going to explode and I just wanted to cry. Half of my face was now numb, (this had been the norm for over a month but getting more so.. )

I remember We flew home on a Monday – 2nd March from Melbourne. Despite how I was feeling I was focusing on being back home, my own bed, planning some special events for March (Cel’s farewell, Mimi’s 9th birthday, Luke turning 40) .. and to get me pumped even more would be the endorphins from doing my fave class the next day at the gym.. Tuesday morning was my favourite training day – full strength, lower body at Hiit Geebung. )

I had set my alarm early – 4am, so I could get up – maybe do a walk on the treadmill and wake up, then go train. Instead I woke, not able to stand much, crying at getting ready with my head and body pounding and feeling so weak. Luke woke and had a shower then realised I was still in our WIR but curled in a ball on the floor and crying. My world was spinning. But I didn’t want the attention – I felt I just needed some more rest. So I reassured Luke that I was ok, that he should go train for the both of us and I would promise to go back to bed. Luke did that, reluctantly, (but knew it would make me feel good knowing one of us was training).
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Luke had to fly out that day to Perth for 2 days – and I promised to go to our Doctors.

I went to our Doctors later that morning (Tuesday 3 March), he was so surprised to see just me. Not a child with me who was unwell, just me – an appointment for me. Which wasn’t me. I’m never sick.

He listened to what I had to say, and his words were ‘Wholey Sh*^ mate, why didn’t you come and see me sooner? This could be serious’.. so with that he sent me away to get a CT scan. I ended up at St Vincent’s Private Hospital as they were the only ones who could see me urgently. The results were in and my GP had his clinic send a text message to let me know I needed to make an appointment to get my results. This wasn’t normal for him – as he knows how fast I work and move – he would normally just call me so I knew what to do. But he hadn’t, so I called and he had already left for the day. So I had to make the appointment to see my Doctor the next day, Wednesday.
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Wednesday, 4 March, and I was back at our Doctors. Something told me to brace for something bigger than Panadol or rest. My Doctors words were ‘Its not good mate, I needed to relook at your scans as I actually can’t believe what I’m seeing’.. My doctor asked how I was feeling before telling me more.. He then said ‘at this stage the scan shows a Cyst in the Centre Mid part of your brain’ .. but you need to have a MRI and urgently as it’s placement is not good. He asked if :
•I was training – I had been pulling back and honestly had not trained in a week
• where Luke was – I replied “Perth till Thursday”
• how the childrens health was – “great”
•and if I had any help – we had Celeste for another week before she was flying home.

Our Doctor then asked permission to call Luke, and he let Luke know on speaker phone call, that I wasn’t well, was not to train anymore, and had to see specialists urgently. Luke was in shock whilst I was numb and had a slow stream of tears running down my cheeks.
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My Doctor tried to call thorough to book the specialist appointment but no one answered. So my doctor asked me to keep trying. So with a referral in hand, tears in my eyes, I walked to my car and called to try book in with the specialist. The specialist clinic answered – I remember not knowing what to say.. I stumbled on my words.. but the PA was so lovely and patient, she said there wasn’t an appointment available for some time,, the wait list was long,.. I was crying but politely let her know I understood. She asked if the Doctors surgery could send the referral – so I said I would go back into my doctors and ask that. I dried my tears up, and again thought to myself all is ok. I walked back to my doctors from the car, and my Doctors receptionist helped and sent through the referral immediately.

Within a moment of me returning back to the car, the specialist clinic was calling me back. The lovely lady from the specialist clinic let me know she had shown the Neuro Physician, and even though he had a waiting list a mile long that the Neuro Dr wanted to see me tomorrow (Thursday 5th). Within moments I had an appointment at his clinic, another referral from him for a MRI with the radiology clinic next to his office, and it was all for that same day – Thursday.
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Despite being away, Luke was keeping an eye on the time, and called me after an hour of leaving my Doctors. I let him know the good news of the appointment for the next day – Thursday with the Neuro physician. We both assured each other and also agreed to just let things be for now.. , we didn’t want to worry the children.

We were also so blessed in that we still had our gorgeous girl Celeste staying with us.. Celeste was able to help me that night, she too knew this was big for me to ask of her. I don’t often ask for help, but she knew more than ever I needed it, and I wasn’t feeling right. I tried not to let her see or know how sick I could be, but Celeste could just sense it. So I choose to be real – didnt hide it – I instead showed Cel the scan and told her the news. Celeste was so amazing and literally allowed me to do what I needed and she took the reins of being the childrens ‘go to’ person. This was beyond a blessing as I litterally crashed that night. Worn out I guess with not having to hide how I was feeling, but also allowing myself to feel.. allow it to be what it was and not pretending it didn’t hurt.

Thursday – 5 March. A special day – Luke was home, Andrew was training for Bramble Bay State side for soccer, Sienna had her first Year 1 assembly, Mimi, Sisi & Bella had open learning Morning at school, and Cel had her last training with the Roar. But I couldn’t be there for any of them – I have never missed any of the children’s activities or school events.. this was the first. Instead – I said to the children I needed to go to Uni and finalise some study, and I was so sorry I couldn’t be with any of them. They were so so sad but took it so well.. the pep up of knowing that the rare occasion of having both Luke and Celeste in their days simply added a whole new pespective and level of happiness.. the children accepted this – and worked Together to conquer the day. Whilst without them knowing – I took on the day of tests and seeing the specialist.
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The first stop was A Neuro Physician – who saw my CT scan and just asked so much into how I was feeling, my first signs, and things like if a wad a Marathon Runner (he asked me like 6 or 8 times this question).. the relevance to this was that marathon runner can sometimes have a condition they develop – where one day when they are running they fall down dead instantly. But this is not me – I am not a marathon runner. Instead the sent me to go and get the MRI, and said he would chat with me more after. The MRI was full on as it was a full body – full spine, full head and also having the dye injection for the last part / frame of films for another head MRI Scan.

The result was again, something the Neuro was complexed about. Luke at this stage had managed to work with Celeste brilliantly., they had coordinated the day so well.. , Celeste had finished her training at the Roar for the morning, and bolted to be with Andrew at his trials to take over from Luke. This was so Luke could come and be with me.

Luke arrived just after my MRI, and waited with me to see the Dr for the results. But the PA came out and said the Neuro needed me to have another scan – another CT. So I went back and had that with Luke by my side. This extra scan pushed time out and instead of Luke being able to be with me when Neuro wanted to go over my results. It had Luke giving me an emotional kiss on the forehead. Luke was so torn – he wanted to be there with me, but he needed to go and collect the girls from school, as Celeste was still with Andrew at the Trials.

My review was – still the ‘Cyst’ wasn’t being labelled, but i again was asked about being a marathon runner, advised I had to stop training, to enjoy being a mum / wife / friend, and to smile. He then said he would refer me to a Neuro ENT, and a Neuro Ophthalmologist. Just to rule out any connection. I asked about management – for pain or if there was anything I could do to help how I was feeling. But there wasn’t. I was so complexed by this.

Again the wait list for these specialists was far and long, though in a space of 24 hours, each having seen my case / reviews films – I was booked into seeing them both within the week. I saw them on the Friday (6th – Ophthalmology) and the following Tuesday 10th (ENT). The ophthalmologist said it wasn’t eye related and my vision was great considering. He put me being able to go for as long as I could without diagnosis to good body health in general.

Then the ENT consult had both Luke and Celeste with me – and his news was confusing., he said it wasn’t ENT Related .. and although he wasn’t a brain surgeon, he thought I would be fine and just to not worry. We left confused. But took his words for that moment of happiness too. We then talked and in summarising things – we knew we just needed to take this with a grain of salt.

As Still, at this point – I was in pain, I wasn’t any better, and I still had no energy, felt nauseous, dizzy and just wanted to switch off.

A review from the Neuro Physician after this again, delivered no new news. He still wasn’t saying much but he said I needed to see the top Neuro specialist surgeon in Brisbane. He said he wasn sure there was anything he could do or what would come from the appointment but it was the only next step. My leaving note from him was to still not train, still keep smiling, and just enjoy life.

I was so Confused.
I had not been given anything to help with pain / weakness / feelings and I felt like I was being kept in the dark. I just wanted someone to help.

Getting into see the Neuro Surgeon also had a wait list that was long, this time it was because the Surgeon was on personal Leave. The surgeon had had hip surgery. But soon after the referral had landed on their fax machine, I received a beautiful call.

The Surgeons clinic called me & let me know that by some fluke of luck someone had canceled on the Drs first day back – I could get in to see him then. This was still Not till the end of the month (19 March). But this was the first appointment- I was so happy. This was Amazing. But meant i needed to lay low & do very little till then. To just get though till then.

Unsure of where I was headed, but knowing me not being able to do much would lead to people realising or asking what was going on. So Luke & I decided Then to share this with immediate family, a super small group of some close friends, close business friends and the businesses who I worked along side with – like companies I was an ambassador for and also clients I was training..

I remember Luke taking the first wave of news to tell – I couldn’t do it. I didn’t know where to start. I didn’t want to admit I was sick. I actually didn’t know what to say of what was going on, as I didn’t know myself.

I started by messaging my brothers, my dearest cousin, creating a group chat for my 4 besties from school.. I then confided in my close support network in Brisbane – my girlfriend Leesa was the first. She was going through so much at the time – her job with Virgin was on the line but some great turns came for her & although she had lost her job she was now in the running for a shot at a new position. So I messaged to see if lunch was a goer & together with Celeste by my side on a Thursday (as I wasn’t well enough to drive) I took flowers to lunch to congratulate her, & then let her know my news. Amongst the emotions, Lees felt the need to tell me of a Dr Charlie Teo. The worlds leading Neuro Surgeon – that lived in Sydney. I left lunch that day feeling mixed – I felt so guilty for upsetting a friend with my news, but it also felt good for letting someone else into my world.. letting someone know about me. I also took some hope that maybe I should call this Dr Teo.

After a whole week of thought – I decided to put all energy to the universe & call Teo. My pain wasn’t easing, I just wanted to speak with anyone who maybe able to help. The Teo Foundation specialist clinic reception answered my call – Friday morning. Friday the 13th of March.. immediately the lady on the phone was so lovely. She said there had been a cancellation due to the evolving nature of COVID19, an international patient was unable to come in on the following Tuesday – March 17th. So if I could come down from Brisbane – she would hold the appointment for me. I was excited but unsure – as I needed to ask Luke. The receptionist at the Teo Foundation was amazing saying she would hold the appointment for the day so I could see if I could make it work.

My call to Luke was quick – he said ‘yes’ – ‘take it’ booking my flight then & there. I called back & let the Teo Foundation know. Now all I had to do was get a referral from my doctor & the scans.

Upon reflection of the date – Tuesday 17 March. I realised once again, this unfortunately was a day that again Luke could not come. Andrew had made the final cut for the Bramble Bay state selection side so he was to be at the fields to see if he could make the team that same Tuesday – so Luke needed to be there. Celeste by a blessing was still in Brisbane – so was able to help. So, I again said to the children I needed to go down to Uni & do some study for the day. Andrew was shattered. I wasn’t going to be at the tryouts final. This was So not like me, I cried myself to sleep that night feeling how much I hated lying .. I never do it – I just so badly wanted to let him into my world. But I wasnt sure how such news would affect his game & how he would play at trials – so let it be what it was. It was ironic tho, as Andrew already had his feelers out. He was truly so in tune with me & for The most part his heart was steering him always in the direction of my feelings. He started having headaches & also guessed a couple of times – stating ‘your not well are you mummy?”

I then called Lees & couldn’t thank her enough for the tip on Teo. Let her know I had an appointment. Lees immediately offered to come & be by myside. I declined as I knew her life was already crazy with her work being so up in the air.

I then had found some strength to finally tell my high school besties (Armanda, Nicky, Tonika & Jill ) – via a video FB group chat what was going on. Tears, tears & more tears. But the end result was me saying a few funnies, trying to lighten the mood & also delivering A promise of ”I will beat whatever this’.. ‘i promise you I have this’.

I then called on a some dear Friends – to let them know. It was hard & it was also good as they knew my spirit and they knew I was not giving in. I reached out to only a small number as it all still felt so surreal. For the most part I couldn’t believe it. Some I tried to call, answered, but some Did not. My take for not getting to tel some people was with everything evolving with COVID19 people’s lives would be busy & maybe the call was not meant to be. It was my way of not having to tell my story as many times as I had foreseen .. because in all
Honestly I didn’t know where or who to begin with first..
** if you are one of those people who did have a missed call from me in March – I’m sorry I didn’t Keep calling.. And I hope you now know what this missed call was.. and I love you fiercely, I just was lost for words and truly left it to the universe.

Again in my mind, so much was already going on with COVID19 and businesses having to temporarily close, people loosing jobs – I didn’t want to add to any of that for anyone.

My amazing soul mate, husband & love in This life – Luke, was also meant to have a beautiful surprise celebration for his 40th. But the combination of COVID19 & me – was enough for Luke to beg me to cancel all plans. So with the most heaviest of hearts I cancelled one of the 2 things I was looking so much forward to doing before knowing too much more of my situation.

The 2nd thing I was looking forward to was Mimi’s Little 9th birthday party. A special little pamper slumber sleepover – it was going to be so beautiful. But this too had to be cancelled – as COVID19 was not for social gatherings. So by some blessing I saw how life with COVID19 was in some ways providing a reason for me to cancel beautiful occasions without using my own. In any other moment, I would have had to let it be what it was & explain I was sick as to why I needed to cancel her party.

Having to cancel all the plans for Luke’s also seemed to all be falling into place – as flights were being grounded & large events / Social gatherings were not to take place. So family / great mates couldn’t fly in – so cancelling was airline driven & refunds granted. Also the beautiful surprise of having Meggy, our eldest, come down as a surprise was cancelled. This also meant cancelling what I had organised as Lukes 40th present. This gift was more an ‘experience’ and by someone who had so much impact on Luke in Music. I had contacted and arranged for the amazing Alex Lloyd, to sing as a surprise at LUKES 40th. Together with contributions from friends, we all chipped in so Alex could come & play an exclusive gig.

But now I also needed to let Alex know we needed to cancel. Alex, was so intune with the ever evolving events the world was waking up to each day with COVID19. It was actually Alex who kept updating me & was worried he wouldn’t make The party due to cancelled flights. So Alex was so understanding and jointly agreed we needed to cancel. Alex was amazing and just couldn’t do enough to help. He knew of my news, and was just so heartfelt with positive words & encouragement for me.

Celeste also flew out that week. It was Another hard moment. As Cel is so much an extension of our family – I was internally scared not to have that someone in the home I could cry with when Luke needed to be with the children or at work. Cel would also bring so much love & energy into the home, that the children were always laughing, outside playing & just hanging out with her. Saying goodbye to Cel at the airport was hard – as we both knew the goodbye could mean so much more.

My eldest brother Leigth flew in that weekend.. I had told him from day one.. and kept him up to speed as needed.. my eldest brother is a man of few words in times like this.. I just took reflection on how we all coped when we lost our dad.. so I knew that when he said he was flying in, he was travelling to see Me – which meant so much. We had an amazing weekend & for a day I felt good again. It was perfect timing.. allowing me to appreciate some happier times – being social. I went to a beautiful friend, Lanka’s birthday dinner (I had told her my news & she knew me coming to dinner was not assured), the Hiit Geebung breakup, + did another Birthday lunch with Lanka on the Sunday. All whilst being with my Big brother & the family too. It was a hard but fun weekend. I’m glad I got to take on those memories & I pushed myself to go.

When Leigth left, I fell apart again. I just wanted the world to stop. I hadn’t had enough time to do the Things I needed to. I sure as didn’t still have the words to tell people what was happening to me.. I mean what was happening?

But I just took to what I do when I feel ever unsure. It was my time again to pull up my socks & just get on with life. All was going to be A-ok.

By the time it came for me to travel to Sydney to see Teo – I had a hand full of people who wanted to come to Sydney in Lukes place (due to him being unable to).. thank you Chon, Cel, Lanka and Lees.. but as I didn’t want to burden anyone & flights were nearly not going, I fended them all off.. so I thought.. but Lees & Luke constructed a plan – seeing I would need & wanted me to have the support. Leesa & Lanka wanted to both fly me – but I had already asked Lanka to look after the girls that afternoon.. The children were so excited., I didn’t want a babysitter – for fear of them catching on, whilst Luke needed to be at the soccer trials with Andrew..

The plan between Luke & Leesa hatched. A beautiful text message from Lees showed me she has booked her flight to come with me.. I was speechless & so emotional. She flew virgin & I flew Qantas.. we met in the terminal car park & took an Uber to Teo’s clinic. Both a little on the giggly side, I guess also numb with the unknown. Luke was back in Brisbane doing the BEST job in making sure our plan of why I wasn’t around, was being delivered strong.

Also though Lanka wanted to be on the flight with me, i had asked if she could help with the girls and take them home from school that day. ‘Deliver a Butler’ fun packed afternoon. I knew this wouldn’t have the girls asking questions. Instead be stoked to have a mid week after school play date.

I also had beautiful Chon offering & wanting to travel with me, but she needed to be at home. There was already so much going on with online training app SWEAT, and then there was the amazing HIIT Station community. Plus the amazing dynamic of what her and Sam do. Those beautiful boys & just the busy life’s they lead. But it was nice to know how much we had their support too.

We also had the beautiful words of love & support from all of the very small group of people we had told. I know my brother, besties all wished they could fly in more than ever.

…TO BE CONTINUED IN PART TWO.