A Stroke of Luck which has given me a chance of survival, a chance in life.
My name is Michael, I'm 37 and I’d like to share my story of life with an incurable heart cancer.
Second round of chemo at Peter MacCallum.
I was at the gym as my darling partner Rebecca, thought it a good idea to sign us up for the Half Melbourne Marathon. Now I’m no couch potato, but this was going to require a lot of effort and a dedicated training schedule, which I was happy to do for her. I was ending my workout in the gym sauna when it happened. I was quick to recognise the symptoms of stroke, as I regularly care for those who themselves have suffered the same. Within seconds, my movement and speech were both impaired. With great difficulty, I was able to communicate the urgency to call an ambulance and I was quickly rushed to The Royal Melbourne Hospital.
It was the day before Good Friday and the hospital was abuzz with the notification of ‘code stroke’. I was rushed through, scanned, tested and was made to wait as I slowly regained my movement and speech. The first few days, the doctors seemed quite convinced that I had a common hole in my heart, which could have been remedied with keyhole surgery and only a day in hospital. Great I thought, I’ll be home in no time. I began to reschedule my shifts at work and was looking forward to a quick recovery and with a decent excuse to get out of running the marathon.
The days and weeks following, I remained in hospital as they continued to try and find the cause of my stroke, as it was not as clear as they had first imagined. I was under 24/7 monitoring in the cardiac ward, hooked up and unable to even enter the elevator. I quickly made friends with the tribe of 70 plus year olds, who were enjoying their daily laps around the ward floor for some relief of cabin fever. What I came to know however, that although it seemed that I was the youngest and healthiest in the ward, I was in fact the sickest.
The doctors confirmed that from what was hoped to be a hole in the heart, turned to be a mass on the heart, then with the hope it was benign, turned into a malignancy and with the hope of it being curable was found to be the rarest form of cancer, an incurable, cardiac sarcoma. For those of you who don't know, this is the bad boy, the one that you don't want. People joke that I like to be different but 0.001% rare is more than even I bargained for.
On the bright side of life, I’m a proud father of two great kids Axel, 7 and Marlee, 10. I believe to be a great father and this is by far the most challenging part of having cancer in the heart. The initial conversation I had with my kids, was guided by a parenting book on ‘How to Talk to Kids about Cancer’.
Marlee, Axel and Me.
The first time I was at a loss for words as I couldn’t comprehend how to deliver such news to my young children. I can philosophise about my life and how death doesn’t scare me. There’s so much beauty when my emotions are heightened and weirdly, I enjoy exploring them. I never say, “it’s not fair”, because why wouldn’t it happen to someone like me? Cancer does not discriminate.
Getting in first before losing my hair to chemo.
But when it comes to my kids, I have to say, “that it’s just not fair” and “I’m sad”, for them. It’s just not fair that they may lose their father at such young ages and at an age they may not even remember me. Axel laughed when I broke the news to him, the way a child would when they’re in trouble and confused on how to react with their default reaction being laugher. I remember those times too! My ten year old girl Marley, was able to fathom more of what was happening to me and asked the tougher questions about life & death. I see so much of her in me.
My motto through this is ‘business as usual’ and for most part I am able to be the parent, son, brother, friend, and partner I’m used to being. I walk my kids to school when I can, I maintain routine as much as possible, even if routine now means laughing and joking about daddy’s bald head and face. Axel told me that i’m soft and wrinkly. I guess I can’t hide my flaws anymore.
My parents Cozzy, Johnny and I.
However, it brings me to tears, every time I think about my kids. They’re so young. As I continue to make memories in the now, I’m also documenting memories for them to bank in their future, just in case I’m not around. Although I keep a positive mind, I must prepare for the odds. I need to ensure, that my kids will be ok. With a wonderful mother, supportive family and partner and a strong network of friends, I know they will be. Despite prevailing circumstances, I really am a lucky man! I’m moved beyond words by the generosity, compassion and humility shown by everyone I know and don’t know. I’m grateful for my partner, Rebecca and her continued efforts in caring for me full time. Without all of you, this would be a lonely journey.
Strangely, it feels odd to be on the opposite side of the bed. For the past 18 years, I’ve work in respite and residential disability care for both Yooralla and Merri Health Interchange. I love my profession. I see the joy that life can bring my clients and the joy they bring me. It scares me however, to compare my situation to those I know with acquired injuries and to lose my ability to communicate. It scares me to know from experience how life’s events can have a direct and dramatic bearing on the future. I’m scared to have another stroke and not come out of it as well as I did the first time, my stroke of luck.
Animal therapy at Peter MacCallum Cancer Institute.
Being in the industry, I fancy myself as a bit of a medical wordsmith, I have enjoyed showing off my medical terminology to the nurses at every given chance, especially reporting back on the Bristol Stool Chart. My time at Peter MacCallum Cancer Institute is made somewhat bearable by those who have dedicated their lives to helping someone like me. I’m receiving a very high dosage of Chemotherapy, which sends me back every 2 weeks for 4 days at a time. Chemo is my only option at this point. My sarcoma is inoperable and too aggressive to receive radiotherapy. I’m on a cocktail of anti coagulants, anti nausea and pain relief medication, as well as Rebecca’s home remedies of Grape Juices, Turmeric, Soursop and Olive Leaf Extract. I’m throwing everything at this!
One of many nurses who have cared for me.
A big struggle through this ordeal, has been financial. Though I worked full time hours, I was on a casual wage and unfortunately, I am not entitled to any benefits, including sick or annual leave. I was hospitalised on April 13th and I have not receive any payments from work or the government. I have applied for the disability pension, but the claim takes up to 3 months to process. When is does, it will only cover a quarter of the wage I was receiving and only enough to barely pay for rent for my kids and I. Having cancer is expensive and it does not care about life as I had it.
Funds I hope to raise through this will be used for:
- Ongoing medical and hospital bills.
- Medication with a monthly cost up to $3000.
- Rent and utilities for my children and I.
- Axel and Marlee's primary school fees.
- Food and general living expenses.
I can’t do this alone. No one should do this alone and it upsets me to imagine those who do. I’m asking for your help. I’m asking you to help lessen the blow and burden living on my heart. I'm asking you to help mend my broken heart.
If you're not in a position to donate, I ask you kindly to please share.