December 2018 was shaping up to be the end of a fantastic year. Geoff’s Electrical business was booming, he had employed a full time contractor as well as an apprentice. They were all frantic making sure all the customers got their jobs done before the Christmas shut down. We had managed a wonderful trip to Singapore and Thailand only a few months earlier and looking forward to a quiet break at home for the two weeks over Christmas.
Queensland had suffered incredible heat waves and electrical failures. As an Electrical Contractor Geoff was literally flat out, all day every day – late into the night. This would follow with hours of paperwork and invoicing, all normal things for a man working for himself. The days bleed into each other and you’re literally busting for a break!
Christmas Day was fantastic, he could breathe. Kids were all around, all five of them. Being a blended Family we become an instant party in minutes. Boxing Day was a trip to the movies in the evening. Geoff was tired, super tired – in fact, I’m sure he slept during the movie but regardless he was there beside his family for a night out.
Working in the shed at home the next day, we battled in the heat stock-taking vehicles and having a good clean out ready to hit 2019 on the ground running with a fresh clean start for him and the staff. At 5.30pm Friday 28th December, we got the first hint of our world turning upside down, he had his first seizure (that we knew of). He didn’t convulse, he didn’t lose consciousness – he just couldn’t get his words out. He was stuttering and unable to verbalise what he wanted to say, it was evident he knew exactly what he needed to say but was flabbergasted that the words simply wouldn’t form. I called an ambulance, convinced he was having a stroke. They came and assessed him and by this time, he was completely back to normal. Geoff told me that he had felt something similar the night we were at the movies – his vision zooming in and out, feeling out of sorts and vague.
We went for a GP visit on the Saturday morning. He wasn’t too keen on the details of the night before and suggested a quick visit to the ED at Gold Coast University Hospital. Geoff wouldn’t have a bar of it, too much to do at home, nothing wrong with me, stop fussing, mountains out of mole hills. So home we went, I’m sure I had steam coming out of my ears...MEN!!!
Back at home, back down the shed – fluffing about in the mad heat. Working well together we were achieving what he needed to achieve and making ground on getting vehicles ready to work once they resumed. Once this was done, his Christmas break could finally start and maybe he could relax for a few days.
At around 3pm, he slowly walked towards me and held my arm. He couldn’t talk, he could barely stand or walk. He knew something was wrong, very wrong. It was happening again. This time the Ambulance didn’t muck about, they took him into ED but he recovered, perfectly again. Held overnight, there was no sign of what had already happened in the days prior, not even a whisper. They sent him home and said that someone would be in touch over the coming weeks to conduct an MRI and other tests. Perhaps that would tell a different story. I wasn’t having that, we left the Hospital and went to our GP and obtained private referral letters to try and fast track the MRI and find out what the hell was going on. Sunday night, we were home again.
Monday morning, New Year’s Eve – forever to be known as D-Day for me. Quietly having breakfast at home, waiting for specialist rooms to open at 9am to try to get Emergency appointments and scans completed. A neighbour came to visit, knowing Geoff had been in the hospital. I quietly listened to the conversation they were having and started to notice Geoff not following the questions being asked. The neighbour looked at me, and quietly left. Geoff says ‘I have a cracking headache’. He wasn’t with me, his eyes were blank...here we go again. This one was bigger than the previous ones. I can talk about them clearly now, but at the time I was so lost, scared and petrified as to what it all meant. The ambulance came under lights and sirens and left for the hospital in the same way. I knew it wasn’t good. I had the most horrible ache in my gut and no idea what to do. The Hospital are calling asking if he has metal shards in his eyes, any metal in his body, questions questions & more questions. Somehow I continued driving, calmly answering all the while.
I get to emergency, they take me into a room and he isn’t there...PANIC. He is off for an MRI, relax. Well that’s good I thought, that saves me worrying about appointments, surely. The ED Doctor asks me if I want to know the process, how they will determine the concerns. Yes, I say – what else would you say? He tells me we rule out the worst case scenario first and work our way down from there! What’s the worst case scenario, I ask and the words come through ‘Mass on the Brain’ ..
He comes back from his MRI, he still can’t talk to me. He doesn’t understand what is being said. His eyes are open and he’s holding my hand but he’s tired, he keeps falling back to sleep. The EEG wires are all over his head, there are 7 doctors at the foot of the bed talking, fussing, injecting things to his IV and watching screens again and again, more injections. Blood taken. Nurses fussing. I’m so quiet, I’m so afraid. This is not the start to 2019 that we had expected.
Over the coming days, his language still didn’t return. One day he could understand me, the next he couldn’t but I could understand him. Slowly but surely, he came back to me. He didn’t understand what had happened, the multiple Doctors discussions with me, the tears and fear running through my body and mind constantly. Day 6, the Neurologist came in the room. He talked to us about the ‘Lesion’ on the brain (it sounds so insignificant when they call it a lesion) and I asked the question “what are the chances that this is Cancer” and he responded ever so matter of factly “Well, of course it is!”. How dumb of us!
In the coming months, there were many meetings and second opinions gained. Our lives were reeling, our friends were petrified and devastated, our kids were confused and quiet. Life was literally crap on wheels – no other way of describing it. Every hospital appointment brought yet another throat punching load of bad news, more and more bad news. The hole of despair was opening up wider and wider and we had no idea what was at the bottom of it, but it was coming to get us and fast.
March 7th, Biopsy day. We had all decided the tumour was in too much of a dangerous spot to try to remove it so a tissue sample was needed to determine the type of tumour that Geoff had. We knew it would be bad, everything else had been bad. We weren’t even quietly hopeful of good news, we just knew it was going to get worse, but not one part of us thought for a moment just how bad it could get.
“Geoff, you have Glioblastoma Multiforme, a stage 4 Brain Cancer. Unfortunately there is no successful treatment available to cure and we would suggest the average prognosis would be 12-14 months”
You hear the words, you know they are talking to you and you suddenly realise why the Social Worker is in the room with you and the Doctor. They leave the room to ‘give us a moment’ and we sat there both ever so quietly, and we both cried. Silent tears of fear, loss, confusion, questions, hopelessness, a horrible horrible silence.
Leaving the hospital I say to him “I’m so worried for you”. He reaches across and holds my hand and says “I’m worried for you too”. That’s who this man is, someone who is always there for everyone else.
His journey for 2019 was not great. The level of medications he was taking for seizure control was incredible – 5 anti seizures at one point, plus Dexamethsone by the bucket load. I have an intense loathing of Dex – bloody Dex, I hate Dex.
Geoff’s body continued to deteriorate throughout the year. Multiple attempts to reduce the Steroid saw him have seizure after seizure after seizure. He had completed Radiation & combined Chemo for 6 weeks. He got through round 2 of Chemo (5 days on, 23 days off) and he was sleeping 18-20 hours a day, we decided to stop the Chemo as it was just taking too much of a toll on his body and stopping him from being part of our lives.
The Steroid dose was still anywhere from 8mg – 12mg a day, no matter how much they tried every time he weaned down he would have a seizure. No choice, he must remain on 8mg a day. It ate his muscles and reduced him to needing a wheelie walker and a scooter at the age of 45. It thinned his skin so every time he brushed against something firm, his skin split open. He had thrush in his mouth for 9 weeks. He was dying before my eyes – I could see it, EVERYONE could see it. In July of 2019 he was discharged from Oncology and into Palliative Care. DEVASTATED they had given up, hadn’t they! Well actually, they hadn’t. This direction was possibly the best thing they could have done for him.
In his time with PalCare, he had numerous seizures whilst they also tried their hardest to wean the Steroid. They provided us with wonderful Legacy workers who came and sat with us both making sure that his wishes in life were in place, talked about stories in his past and made sure that we had these important facts about him written down and set in stone. So many laughs and tears and memories shared.
Whilst there is nothing this man wouldn’t do for me, this journey has shown me that this is matched by your partners strength when you are down. My mindset is in overdrive, constantly. It’s not a bad thing, it’s just the pure love and devotion to someone you care infinitely about coming to the forefront. It’s not a choice, it’s just how it is. It’s how we are.
I started talking more and more about the Steroid – can’t he get off it? Isn’t there an alternative? I have read about Avastin treatments helping tremendously in reducing Steroid levels, will this work? Our PalCare Doctor listened, talked to Oncology again and in November 2019 Geoff started his first infusion. The Dex started to slowly reduce, could this be a good thing – I’m so bloody hopeful.
The reality is, yes it did help. In fact, it’s been LIFE CHANGING. Geoff is now heading into month 18 of his disease. He is beating averages every single day.
From being Wheelie Walker & Scooter bound only a few short months ago, he can now manage four PT sessions a week, for strength building. He can walk up and down stairs. He can lift things and feel useful within himself. He can stand to shower (sounds simple, it’s been horrendous).
For all the downs of this journey so far, it has been uplifting in how it has changed who we are. It’s shown us both that the determination and love of a true partnership can achieve things in life that you feel are impossible. I don’t believe its luck, I believe its hard work & a will to see change, along with a strong desire to go forward, think positively and thrive.
Geoff has shown me that it’s possible to laugh through this journey, to not be blinded by the big picture but more so to take the small sketches that life puts in front of you and take your time investigating and appreciating them. The bigger picture will come together when it’s all good and ready.
Our friends and family are beyond supportive. There is a group of his ex work colleagues that take him out for dinner every week. Some weeks there are 2 – 4 of them, other weeks there are more than 25. All men coming together to support each other, whilst they also support their mate. We have astounding neighbours who have cooked meals, mowed lawns and provided many shoulders to cry on. Instead of drowning ourselves in misery on New Year’s Eve in 2019, we had a party. We invited anyone who wanted to come to celebrate his life and to spend time with him, an awesome day!
So recently I said to Geoff, I think it’s time to get some of your power tools out and play around in the shed. Let’s build some decorative bird houses and stuff. So his next chapter has started. He’s building things from wood for the first time in his life and he struggles, badly. The Math skill required is tough, the concentration is ridiculously hard, there is usually a mistake on every single one because his brain just can’t keep up with the thought processes – but it doesn’t matter. He is making them for his friends, his family, he is making them for people to know that no matter how bad life ever gets you still have the capacity to GIVE. You still have the capacity to care about others, even when your own life sucks big time. It says to all and sundry, you never give up.
We know that the end of this journey will come at some point, but who knows when now. We live each day, and that’s it. We have the odd thought about a day or two ahead, but we live just one day at a time and it’s all good.
This man may die fighting – but he will have fought a good fight, with a coach by his side guiding him all the way.
My love will be with him forever.
Written by Fiona Hassmann (Geoff's partner)
Geoff and his mates