“Get busy living, or get busy dying” says Andy Dufresne from one of my favourite movies of all time. While there are many scenes, quotes, and other inspirational leaders I have known in my 47yrs, there are really three that I truly resonate with in this year of 2023.
While there is of course the above quote from Shawshank Redemption, the other movie quote belongs to Forrest Gump. “Life is like a box of chocolates. You never know what you are going to get”.
Joko Willink says “Discipline equals Freedom”. This one I have taken with me in all aspects of my life since reading his book a number of years ago. Those that know me in a professional environment would perhaps have a small grin on their face reading this, along with my closest family and friends. This is the single, most impactful life statement one can take with them, and certainly holds true this year.
Life was great. After accepting a Regional Business Director position for Eastern Europe, Russia and Middle East, my wife and two daughters set off to start a new life in Budapest, Hungary. My passion for people and building high performing teams resulted in a hugely successful start and following years, expanding our business and teams even through some very challenging geopolitical issues, as you would imagine.
We spent our family time exploring Central and Eastern Europe, providing all of us an opportunity that many don’t get to do.
It was one of these holidays, New Years Eve 2022/23 in fact, we were holidaying at the island of Grand Caneria in the Canary Islands, which was to be our last while living in Europe.
Dizzy days ahead.
Sitting in my very modern, top floor office building November 3rd 2022, the room just started spinning. That was weird… After several times in the space of 30 minutes, I headed straight to our private, English speaking medical clinic, mainly catering to expats, to see my doctor.
My doctor was not in that day, so I saw another doctor who instructed me to undergo a urine and blood test and advised that most likely I have vertigo.
Off I went with a script for ‘vertigo pills’. I was not convinced, so I booked a telehealth appointment with my normal doctor for the 7th November. My dizziness continued, approximately 5-8 times per day at various times. On the 7th November, my GP referred me to an ENT specialist whom I saw on the 11th November, undergoing an ultrasound of my throat and neck. Results 16th November. All clear.
Did I really have vertigo? I never had vertigo in my life, and I don’t mind jumping out of planes or from the tallest buildings! ????
My GP booked me in with their neurologist, Dr. E. The earliest appointment possible was the 10th December. I can’t tell you enough how much she became pivotal to my journey. Now, by the 10th December, my dizziness had all but gone away. From up to 8 times a day, to a few times a week and then it pretty much stopped.
Never ignore signs your body is trying to tell you…
After completing all of the neurological tests with high success- no issues found!, Dr. E said, look, perhaps it is vertigo, as the ENT, blood and urine test, Neurological tests all came back clear. Note, that I also get a full medical done each year, just as I wanted to ensure I’m healthy. My latest one was in March that year and all was fine. I enjoy fitness, never smoked, not overweight etc. I do like a glass of red though I must say.
Dr. E looks at me and says, “Craig, out of an abundance of caution, I’m sending you for an MRI”. So, on the 21st December, off I went. I was feeling confident as my dizziness had disappeared and the specialists had not found any issues thus far. Surely, I’m good to go. The MRI stopped after 10 minutes, with the radiologist asking me if I could have ‘contrast medium’ put in me. I said, “what is ‘contrast medium’!?”. Now, the Hungarian language is challenging to say the least, and I was not convinced at all with this conversation. Surely if there was anything to be found, it would show on the MRI without having to put this ‘contrast medium’ into me. I refused, MRI completed and off I went with my day.
Exam notes come through (always in Hungarian, having to wait additional days for the English translation). Dr. E rings me shortly thereafter and says that I need to go back and have another MRI, this time with contrast. Booked in for the 5th Jan. We had planned a family holiday to the Canary Islands from the 27th December to the 3rd Jan. Exceptional holiday in Grand Canaria with the family, lots of sunshine and an escape from the cold winter of Budapest!
5th Jan scan, this time with contrast. Radiologist askes me upon departure “when are you booked into see your Neurologist?” I say “In around two weeks”. Radiologist says “no, I urge you to see them urgently”. Ok, I was immediately concerned. We wait for the English version of the MRI report and then Dr. E phones me to say that I am to go and see Dr. Dr. O at the National Institute of Neurology, Budapest on the 11th Jan. Appointment was organised, so just be there at 9am.
After navigating this huge Institute, filled with Hungarians and not a word of English to be heard or seen, my wife and I wait in a long corridor filled with doors along each side. Many people are also waiting to see doctors with only a handful of seats available apart from a waiting room at the entrance. Dr. O opens his door, calls us in. We sit down next to his desk. He turns his monitor towards us and says “Tumour” in perfect English. The word we were dreading to hear was now reality. Dr. O asked many questions but was mainly surprised that I had never had a seizure or a stroke. He asked this several times in the space of a few minutes! Even more worried now. Generally, the first sign of a tumour like this is a seizure or a stroke. He was happy that I never smoked. He also asked this several times. It became apparent to us over the course of the next few months how important it is to not smoke cigarettes.
“So there is good news and bad news today” he says. “The bad news is that you have what looks like a primary brain tumour and it needs to come out. Not as urgent as today or tomorrow, but it has to come out, which means brain surgery and soon. The good news is that it is positioned in your right parietal lobe and it is right between two motor tracts and I am confident that I can extract it in the first instance. Therefore, we should get it out and then do the biopsy afterwards.”
So not knowing if it was malignant or benign, being the positive people we are, we accept it and choose to think it is benign. We go and see Dr. E three days later for a more comprehensive discussion and to answer our 1,000+ questions that the surgeon Dr. O could not.
So, we had a decision to make. The Institute’s operating theatre was undergoing renovations and their temporary theatre was set up at another hospital, the Hungarian Military Hospital. Dr. O said “Don’t be alarmed at the hospital, it really is nothing nice to see, especially compared to the National Institute, so you can either wait around six weeks until the new renovated theatre is reopened at the Institute, or you can have the operation at any time you choose at the Military Hospital. After researching and knowing just how fast this tumour grows, and it was already at 4.5cm x 2.5cm x 2.5cm, the final decision was made not to wait.
Now to advise my work colleagues that I would need to step away for a period of four weeks while I have a medical procedure done. I did not elaborate more to the wider team as not to distract them from our sensational business results achieved and strategy moving forward. Knowing that brain surgery is very serious and knowing the risks range from death, to most probable left side paralysis, I set up four of my leadership team to take over all tasks and responsibilities for the four weeks, knowing that if all did not go as well as I hoped, the team could continue without me.
We visited the Institute a few times leading up to the surgery. On one occasion, my wife and I were walked into a room upstairs to meet someone. The room was dimly lit and we were left alone before a guy walked into the room. He introduced himself as ‘’B.’. A nice guy around early 30’s I would say. He was the Hospital’s chief of staff. He explained to us that we were to now pay the money for the surgery. Right then, otherwise the surgery could not take place. Brain surgery costs a lot of $$ (well in this case, HUF), and we were both not prepared in terms of HUF or expecting this, as all medical costs were organised through our medical centre, First Med. In short, we sorted this out panicking, and over the next 48hrs, we had arranged assurance from Globality and First Med that the payment was guaranteed, so we could continue. My life depended on it! It was a very stressful 48hrs…
I departed work on the 20th Jan for the four weeks.
Following another MRI on the 20th Jan (this time a Tractography MRI), and a few tears, I went through One Drive to ensure all my folders and contents were in order, and went through all these with my wife, just to ensure that she knew where everything was in case the surgery didn’t go very well.
So, with all personal and work folders and contents in order, I felt more at ease.
At this stage, Mum and my sister were very keen on flying over from Melbourne, however I saw no need, as my wife’s sister was already landing from Chicago on the 21st Jan to support both of us during this time.
I was treated very well upon checking into the Institute on the 23rd Jan, having Globality private health cover. The hospital chief of staff, B, spoke excellent English, translated all conversations for me and ensured me there was going to be an English speaking nurse on at all times. I had my own room which was great and went through the pre-surgery preparations etc.
Australia Day on the 26th was surgery day, easy to remember! It was a cold day as it was the middle of winter. Also, easy to recall, as I was transferred from my bed into an ambulance so I could be taken to the military hospital. If you know local Budapest roads, you would know they are not great at the best of times, now being in an older Bedford ambulance with no suspension or heating, this was almost comical!
The hospital was actually not bad at all, and I was at ease there, apart from the local nurses there that spoke not a word of English and were really rough putting in my IV lines, ouch…
Surgery time.
It was time to be wheeled into the operating room. It seemed quite modern with all the bells and whistles I expected to see. The anesthetist rolled in and we had a chat. I asked about my catheter. I was actually very worried about this!! I asked that this would be inserted after I was asleep and he said, yes and I said, “can you take it out before I wake up?” he said no. Little did I know that this would remain in for the next week. I really had no idea what lay ahead. I have had several general anesthetics before, however of course, brain surgery was not able to compare. I shed some tears as I was put under, while I saw Dr. O enter the room. I knew of all the risks. Everything from Death and upwards however the most expected outcome would be that I could be paralyzed on my left side of my body and that I would need to learn how to walk and talk again.
“Craig, Craig, we got it all” I heard Dr. O and my wife say to me as I wake up in ICU. Little did I know that ICU at this hospital was an underground bunker.
I immediately lifted my right arm and touched the left side of my face and then touched the whole left side of my body. I could feel everything! I was so happy!!!!
I had an IV line in both ankles, both arms, the back of my bed was at 27 degrees angle and I wasn’t to move. I could think although I was of course very foggy. I stayed in ICU for 2 days and then moved into a ward when my wife and her sister came in to see me.
My sister-in-law decided to take a photo of me. “You!” shouted a nurse. “Delete that now, and also, visiting times are over!” Not only was this said in English, it was in an angry tone. It seemed that taking photographs in a military hospital was strictly forbidden, and my sister-in-law was thrown out haha.
I was transferred the same day back to the Institute after my wife really pushed hard, as this was the agreement that I would go straight back to the nice hospital and to a room by myself. Back in the cold Bedford, this time, far more challenging following brain surgery!!!
Back in the Institute, I was comforted by a significant range of recovery foods from my family. From boiled eggs, quinoa, fruit salad, protein bars etc. Yummo. Beats the hospital food hands down. I am absolutely positive this food helped me recover faster. I had to remain at the 27 degree angle for 3 days straight. Then I was able to slowly get up and start to move around. T first shower was so great! I began to slowly walk along the corridor holding onto the rails and walls and back again. I kept doing this, and eating lots of healthy food, watching movies and TV series and proving to myself how great I was recovering. My surgical team kept coming in to tell me how proud they were of themselves by extracting the whole tumour! This gave me huge comfort and confidence.
I had a very large bandage and stitches where my head was opened up and also stitches and bandage on my forehead where the camera went in. Apart from a few small blood spots where the wire spikes that held my skull tight had slightly penetrated my skin, I was happy with how clean I was.
The nurses at night were a challenge though. Despite my assurance there would be an English-speaking nurse on at all times, this was not to be the case many of the nights, as I found out when they came in to give me a new drip into my arm. With Google translate failing to help with medical terminology, I simply did not know what they were putting in me! I just had to trust them in the end.
It was the 29th January and I was keen to demonstrate to the doctors that I would be well enough to go home on the 30th. This would be three days earlier than generally allowed, however as this was our wedding anniversary I was determined. 1pm on the 30th, I was allowed to go home, only I think due to my carers at home and that I was also able to show the doctors how awesomely I had recovered.
My head was foggy, however I don’t recall having to have too much pain killers, especially going home, so I was pretty happy indeed. Adding to my positivity and demeanor, was the fact that Dr. O and team removed all of my tumour. As the tumour was sent off for the biopsy, we had to now wait two weeks for the results. I was confident that I would be back to work as planned within the four weeks and we would just move on with life.
Arriving home was amazing. Surrounded by loved ones, the couch, bed and loads of movies to watch. I had medications to take each day, along with daily injections of clexane (which I made my wife do as I couldn’t inject myself)!
D Day.
Stitches were to be removed on the 8th February, and at the same time, the histopathological report findings of my tumour would be presented. This was D day…
We sat in a room with my Surgeon Dr. O, and his boss Dr S.. Dr S. explained that the tumour was not benign and that I must start six weeks of daily radiation and daily chemotherapy. I was to go and meet with a Neuro Oncologist Dr B. at the National Institute of Oncology, Budapest on the 10th Feb. Dr Dr. O explained that the news was good as the tumour had not metastasized.
In a little shock from the news, we took our paperwork with us and headed back to the car to drive home. In the car, I read the paperwork. It read ‘Glioblastoma, NOS (WHO grade 4)’ My little shock I was in quickly turned into total shock.
My six weeks of daily radiation and 180mg chemotherapy started on the 17th February, just before I returned to work.
I felt quite good despite the news. Returning to the office was challenging given that I knew that I now had to make the decision to move back to Australia. After much advice from my medical team, and the overall statistics of Glioblastoma, it was clear that my life was to be cut short.
Writing the emails to the board and my team was the hardest emails I have ever written. I was literally sobbing. I loved my team, and they loved me. We were kicking major goals together and over-delivering any projected targets. We had team targets and were excelling at them all. I cancelled my future travel plans and board presentations that were booked in over the coming months and other regional and global meetings were moved to Budapest to accommodate which was really great.
I worked very well over the next six weeks, leaving each day around 3:30pm to travel to the Oncology Institute for my daily radiation. The public transport in Budapest is nothing short of sensational and it was very easy and quick to get to the institute from the office.
I was allowed to drive as I had never had a seizure or a stroke, which to this day the doctors are baffled with.
I only felt sick the first night of chemo. After that, I never felt sick again, which I was surprised and very happy about, especially as I was back at work with an incredibly full-on job.
I had weekly blood tests each Friday. After a few weeks I eventually worked out how to navigate the Institute without speaking Hungarian. The waiting area for the radiation around 4:15pm each day was draining. It was a fairly dark area, no internet reception nor wifi so I had to just look around at the other much older people that were also waiting, each with neurological issues that required radiation.
The blood tests were ok. Take a number along with the other 50 to 70 other people and wait your turn. When your number came up, you went to a counter, gave them your number and ID, then they gave you a cup with a named vial and then you wait again until your number comes up. In the room for the blood tests were six or seven elderly ladies, a couple reminded me of my own grandmother. Eventually they came to know me as the big Aussie guy. It was like clockwork. Their needles did not hurt at all, unlike the Military hospital! Each week I would alternate arms, as between these each week and other blood tests I really felt like a pin cushion.
Following the six weeks, I was to have a break of between four and six weeks before starting a further six months of more intensive Chemotherapy. We had decided as a family, and after advice, that we would return back to Melbourne during this time. We were also advised that my life expectancy was 15-18 months, not that I believed them. I was fit, healthy, recovered very well from surgery and handled the chemo and radiation apart from losing my hair, again!
In the last two weeks of work, it was full on. I hosted three large scale meetings/conferences. A global Regional Business Director Strategy, Transition Workshop for our new Global Sales board member and our Regional Sales and Marketing Kick Off. I finished up on the last day of this meeting, the 23rd March.
I will never forget this week. As well as hosting, I was also making time to coach each one of my many direct reports before I left and also allowing time to speak 1:1 with each of my senior leadership team, the board members and local management.
On the last day, I had my last presentation. It was a highly motivational speech in which tears could not be held back. Then my country and regional leaders gathered all at the front of the very large auditorium in a large circle. This was to say a few more heartfelt words. I looked at the ground, as I was struggling emotionally. I looked up and there were more than 50 sets of teary eyes. I looked back at the ground again.
My regional Marketing Manager presented me with a large booklet with photos and messages from the whole team. Then, she says that, they have written me a song. I was expecting a guitar to come out, however, as it turned out, one of my team’s partner was a music producer, and so my team, together with USA artist Robbie Rosen, had written and produced a song for me, released just the day before on Spotify, and Apple Music, titled ‘Invincible’ For Craig. They played this on the giant screen with photos rolling. To say I was a mess is an understatement. The love in the room was real, and just so many tears.
The move back to Australia.
In the week before flying home, I had 4 blood tests and only given the green light to fly in the two days before taking off. This was to ensure that I could safely travel. After more stabs in the stomach (thanks to my wife), we headed for Melbourne via Dubai. Landing in Dubai I had a major headache however this passed, so all was fine then.
We had arranged a medical team in Australia through a family contact. We had my tumour couriered from Budapest to Melbourne to ensure it could be tested again for a second opinion.
The week of landing, the appointments started with multiple MRIs, blood tests etc. GP visits, specialist visits, family and friends. It was a hectic time. Additionally, we were recommended an Oncology Nutritionist at the Melbourne Integrated Oncology Group (MIOG). Here they developed a personalized nutritional plan for me to ensure I do everything I can to extend my life. This was developed through many more blood tests with deep dive analysis and through proven medical results. This is where the ‘Discipline Equals Freedom’ comes in. Giving up added sugar and simple carbs just to name two examples, is so easy, but getting through easter and Christmas times are slightly harder!
As we could not move back into our family home, we were in a furnished rental, actually for the next six months. This was mentally challenging for me. The family seemed fine, with the girls getting back into school and extracurricular activities. I was very fortunate that I had my amazing wife with me the whole time as my carer.
It was important to have a stress-free lifestyle, so we tried ensure this as much as possible.
The next round.
I started my next six months of higher dose Chemotherapy far later than planned, due to my white blood cells not being high enough. After 8 weeks of my Neuro-Oncologist refusing to start my chemo, we decided to get another opinion, as we were afraid the tumour would regrow after waiting such a long time and the Standard of Care (SOC) only recommends between 4 to max 6 weeks break.
Our second opinion suggested I start chemotherapy immediately, which was such a huge sigh of relief. I just started on a slightly lower dose and was monitored from there. This was the 5/23 program. No sickness again except the very first night of the six months and the last week of it. It really knocks me around, especially the week after finishing the five days. Very fatigued and I have to sleep each afternoon but generally 30 mins to an hour is all I need.
After back-to-back winters (one in Europe and then another in Melbourne), I was struggling and needed sunshine. We booked an impromptu holiday to Thailand in between treatments with my Oncologists’ approval. Amazing and such great family time and memories.
The end of SOC.
As it is now November 2023, I have just finished my last round of Chemotherapy.
I have struggled leading up to the last two MRI scans I must say. What if the tumour was back? So many ‘what ifs’. I am constantly told that I am the most positive person they have met and it is this very strong positive mindset which really does help.
I have been back at the gym, just lifting light and body weights but this provides very high dopamine and endorphins which in turn make me believe that somehow, just somehow, I can be in this 1% that can make it to 10yrs.
In Australia, the statistics are 26% make it to 5yrs. I strongly believe that If I can make it to 5yrs, I mean a healthy 5yrs, there has to be a cure by then. We are prepared to move abroad if there is a treatment that can save my life.
For now, I am a statistic of one. What I have found, especially joining multiple GBM groups globally and locally, there is simply no-one just like me.
How fit I was on diagnosis day, did the patient smoke (this seemed to be a big one), any other medical conditions, where my tumour was, how many seizures (or not), a full resection or only partial, how stressed the person is financially and/or personally, how the SOC went, in full or not and the list goes on…
I continue to have worse days and better days. I see famous and non-famous people passing away from GBM constantly, at a young age. I choose not to look at some facebook GBM groups as they are full of sadness and again, no hope for me as there is no-one like me.
All I can do now is to do everything I can to live a happy, stress-free life and do everything I can to slow the progression down and extend my life, especially while there is no cure, no way to stop this horrible illness.
I am too young, too much to give, have young children and I must survive. I follow Professor Richard Scolyer AO with huge anticipation that he and Prof Georgina Long will discover a way for Immunotherapy to tackle GBM.
I have just had ‘Next Generation Sequencing’ completed on my tumour sample which analyses over 500 tests on DNA make up, in the hope that somehow there may become a treatment that can extend my life.
I am currently on extended personal leave from work. Life really is like a box of chocolates…
Now, it’s time to get busy living…… ???? I wait. Next MRI is late January 2024.
~~~
Story written by Craig Hexter, November 2023 for Brain Tumours Online. Images supplied by the story author.