Steve's Story
I live in Highton with my wife Sophie and two daughters Emilia (5) and Georgie (1). I work at Deakin University and manage the Disability Resource Centre where our team support students managing disability, medical and mental health conditions so they can access an equitable and inclusive education. Prior to that I worked in a range of roles in education, community development and sport in Australia and overseas.
I grew up in Lorne before moving to Geelong as a teenager. I moved back to Geelong in 2013 after time living, studying and working in Melbourne and New York. Sophie and I met in 2011 while she was working for my parents at their health food store. Sophie is now a primary teacher and Nutritionist. We welcomed Emilia in 2015 and were married in 2018. We learned we were expecting our second daughter just a few months before I was diagnosed with oesophageal cancer in August 2019.
I have always loved playing and watching sport. I played a lot sports as a kid. As I’ve gotten older Basketball, Cricket and footy have been replaced by swimming, kayaking and chasing after my kids!
My cancer journey began after I had severe stomach pains in late August 2019. The pains came out of nowhere, persisted for a few days and got steadily worse. I went to emergency twice and eventually had an exploratory gastroscopy. I stayed in hospital for the night after the procedure and actually started to feel much better.
The next afternoon the surgeon came into my room to tell me I had Oesophageal Cancer. He said it was likely very early stages but further tests were needed before a clear course of action was determined.
He also said I would need major surgery to remove the cancerous area along with a large portion of my oesophagus and some of my stomach.
Interestingly he could not find a link between my stomach pain and the cancer. It seems it was an ‘incidental finding’ which likely saved my life. A good lesson to always get checked out by a doctor when you are sick, and keep going back if you don’t get better.
As a healthy 38 year old (non-smoker, limited drinker and previous good health) this was obviously a big shock. Apparently, it is rare to have Oesophageal Cancer so young. When the doctor told me the diagnosis I was alone in hospital. As the surgeon was talking to me, I remember trying to slow my thoughts and really focus on what he was saying, in order to gain an understanding of what it all meant. Sophie arrived just as the surgeon was leaving my room. He was able to repeat himself for her, which was lucky as I would not have remembered much information on my own.
The two things that stuck with me were the surgeon saying:
“There is no good cancer. But the best type is when it is found early. We think we have found yours early.”
And… “This will be the biggest surgery you will ever have in your life. There are none much bigger than this.”
Sitting with that news my first thoughts went to Sophie, who was 35 weeks pregnant with our second daughter. All the obvious immediate emotions and thoughts hit me quickly…
“Am I going to be alive to see my daughters grow up? Will I need chemotherapy or radiotherapy? How bad is Oesophageal Cancer and can I survive it?” And … “How are the girls placed if I wasn’t here to provide or care for them?”
Father’s Day was one week after my diagnosis and a few days before surgery. I remember that being the toughest and saddest day I can recall. Despite trying to stay positive I could not help but think that this might be my last Father’s Day.
Once I was diagnosed things moved quickly. I was scheduled for major surgery on Friday 13 September 2019, only two weeks after I was diagnosed. The surgery was to take about 10-12 hours. I remember being pretty scared as I was wheeled away from Sophie at around 6.30am that morning. But overall, I was keen to get the surgery done and confident I would recovery quickly; possibly perhaps quicker than most. I was also sure I would be there in-person for the birth of my daughter, due to arrive in two weeks.
However, Georgie had other ideas. By the time I woke that evening in ICU after surgery she had arrived safely just down the hallway in the maternity ward. Amazing timing
The hospital staff at University Hospital Geelong that night were unbelievable. The nurses from the maternity ward arranged for Sophie and Georgie to visit me in ICU at about 11.30pm and we were able to have a cuddle and photos. Apparently, having a newborn visit their dad in ICU was a hospital first! In the days following surgery I was moved to Heath Wing 6 – a post-surgical ward for recovery.
Initially my surgeon told me to expect a two week stay in hospital, a quick return to fluids and soft food and recovery from there. I could aim to be back at full time work in 6 months.
But a few days post-surgery I developed complications and infections which required me to return to ICU. It was during this time things got extremely serious as infection took over, with a significant fever, fluid build-up in my lungs and all around my body and an elevated heart rate which wouldn’t decrease.
At one time I counted a total of 12 tubes or drains coming in or out of me at one time. It was also during this time I had some severe reactions to the pain medication which caused some terrifying hallucinations. Not something I would recommend.
The one positive bit of news came during this time. The results from the surgery indicated the cancer had not spread and that, most likely, I would not require post-surgery chemotherapy. This was wonderful news and reassuring but, at the time, I was fighting a different battle.
After x-rays, scans, tests and another trip to theatre it was discovered I had developed a leak in my stomach, meaning a complicated and long healing process.
And it wasn’t until much later that the seriousness of those few days dawned on me and, on reflection, how bad things were and how things could have turned out much differently.
After a few days of uncertainty a plan of action was put in place. Basically, I needed time for the leak to heal. Once the infection was under control, I returned to the ward to recover with a trip to the operating theatre every three days for the next 5 or 6 weeks until the leak had healed. It was a very slow and painful few weeks during which I had my lungs drained, countless x-rays, scans and procedures. I think we counted 13 trips to the operating theatre in the eight weeks since my initial diagnosis.
Eventually the leak began to slowly close over and the tubes and drains were removed one-by-one. After 8 weeks in hospital I was stable enough to go home and receive care from Hospital in the Home (which is another great Barwon Health service). This meant I could attend my dad’s 70 birthday that weekend which was a big goal of mine. By late November I was able to start drinking small amounts of fluid and eating soft food. I had not eaten a thing for two and a half months and would continue to get most of my nutrients via a feeding tube which was connected 19 hours a day until I got used to eating again.
Finally, two weeks before Christmas my feeding tube and final drain were removed. I was able to slowly eat more each week (although digesting food has changed significantly for me since surgery) and I was able to get back to into the swimming pool by Christmas, which was another big goal. My lungs had taken a fair hit but were slowly improving and the scaring/muscle damage around my shoulder was getting better too. So much so that I started to swim laps again early in 2020 (yet another goal of mine).
The Barwon Health staff have been wonderful. Especially nurses at University Hospital Geelong in Heath Wing 6 and in the maternity ward during Georgie’s birth. All along the way the nurses were true lifesavers.
They treated myself, Sophie and our two girls with such care. One example I remember was a couple of nurses making a special name badge for my daughter Emilia on her regular visits, so she felt part of the nursing team. She still remembers that to this day.
All staff (nurses in particular) provided me great company and comfort during times of isolation, as Sophie was needed at home with the kids for much of my time in hospital. The company and conversation were just as important as the excellent health care. I could imagine many patients, especially during COVID times with limited visitors, would not be as lucky as I was with friends and family visiting often. As a result, the role of the nurse becomes even more important for those with long stays in hospital.
Luckily, my involvement with Barwon Health’s Andrew Love Cancer Centre has been limited as I haven’t required follow up treatment. However, I would imagine these facilities such as the Wellness Lounge and services are extremely important to people going through long term treatment. From my experience being involved with wellness activities (massage, acupuncture, meditation, improving food knowledge etc) gave me a feeling that I am an active participant in my own recovery. It gave me a sense of purpose that I could do ‘something’ to help myself.
Since my diagnosis and surgery, I have had many ups and down, both physically and mentally. But the trajectory is a positive one. I’m at this stage cancer free, I’m exercising well, managing fatigue & food better each month and have been back at full time work since March 2020. I’m still adapting to some life-long changes with digestion, diet, sleep and fatigue but overall, I have bounced back pretty well. Most importantly, I’m playing with Georgie and Emilia just like a normal dad.
Overall, I am feeling optimistic about the future. You never know what is around the corner and that is hard to reconcile in my mind. And I never want to go through something like that again. But if we did, then at least I know Sophie, the girls and myself have a reserve of strength that we probably didn’t know we had before all of this.
The importance of having world class health care locally in Geelong is so important. The fact that I could have major surgery, access to quality intensive care and the availability of the Andrew Love Cancer Centre just 10 minutes’ drive from home (rather than travelling to Melbourne) can’t be underestimated. The more our community can help improve the facilities at Barwon Health through the Barwon Health Foundation then it is a good outcome for all.
Also, our family is extremely lucky to have a close extended family, many great friends and supportive employers and colleagues who have supported us through the past few years. But we understand not everyone is so fortunate. I’m also conscious that not everyone affected by cancer has a positive prognosis. So, the part that healthcare workers play in the life of a patient cannot be underestimated. The ability for them to provide expert healthcare with compassion is so important. I want to thank everyone that chooses this line of work.
Since I was diagnosed in August 2019 we have had family members, friends and colleagues start their own cancer journey. It really is true that cancer touches everyone in some way. So being involved or donating to Dry July will have a positive impact on everyone at some stage of their lives, whether it be themselves or a loved one. I can’t think of anything more important than improving local care for those experiencing serious health issues and would encourage everyone to fundraise or donate (their time or money) in any way they can.
Also, I was forced to not eat or drink any fluids for over two months. So not having an alcoholic drink for a month is a walk in the park!