A Sailor’s Tale: Stephen Cibich

I met Stephen at Hampstead Centre where we were both part of a fitness and rehabilitation group specifically for stem cell transplant survivors. As the weeks passed, I learned that Stephen was helping his son pursue his interest as a rock music artist.  We had a passing joke about the unfortunate neighbours living next door. 

What struck me about Stephen was just how calmly he went about his business. Unfortunately, a few months into our sessions, he stopped turning up and we’d later  learn from the group leader that he’d broken something. It took a long time to learn the full extent of his condition. It emerged bit by bit that he’d experienced a medical impossibility by being diagnosed with the same blood conditions as his sister. Details came forth that although he and his sister had both received stem cell transplants, his sister experienced no post-transplant complications, while he’s endured a malady of chronic issues including bones that are as fragile as sticks of chalk. 

Along the way, I learned that he had to abandon his career as a teacher, work he loved.  I also learned that he had a special affinity for First Nations people and a passion for sailing. What sets Stephen apart is a calm acceptance of his situation, no complaints and no trying to apportion blame. Despite the enormous setbacks he’s faced, and plenty of reasons for him to feel aggrieved, he’s re-emerged as a writer of delightful children’s stories. 

Stephen typifies the spirit of a skilful sailor. He’s navigated storms far more intense than most would face with grace, good humour, and no fuss. When the weather turns for the worse, he is someone I’d want to be at the helm of my ship.

-Graham

 

Stephen’s Trajectory

Growing up, I never had any intentions of becoming a teacher. What I had hoped was to either become a vet or an astronomer, but I kind of just fell into teaching. I think the idea of wanting to be a vet stemmed from watching the BBC show ‘All Creatures Great and Small’ as a young boy. When I was in high school, another series sparked my imagination, ‘COSMOS’ presented by world renowned scientist Carl Sagan. 

While at high school, I did some work experience at a vet, which I really disliked. I then had the opportunity to also do work experience at the Institute of Medical and Veterinary Science, which I really enjoyed. So my career thoughts turned to science. 

I was accepted into the course but for some reason I turned the offer down and accepted an offer to study for a Diploma of Junior Primary Teaching and Bachelor of Education. As it turned out, it was the right decision and one that has led to many amazing experiences in education. It was also where I met my wonderful wife Patti, in fact, we married while still at university. 

I’ve had some great memories teaching including being awarded the ‘Science Teacher of the Year’ in South Australia, flying to Canberra to receive the award. I’ve also been privileged enough to travel to South Korea to teach English there for two weeks as well as moving to Ontario, Canada for a year with my family as part of a married teaching couple swap.

The Tension

Another school year was wrapping up and I was looking forward to Christmas when I decided to visit the doctor. I had been feeling a little under the weather for quite some time but nothing that really concerned me. However, after increasing pressure from Patti, I eventually made an appointment. I described to the doctor all of my vague symptoms and she checked my vitals (all terribly normal). She also took down a complete family history and, because of this, decided to order a bunch of blood tests including a bone marrow biopsy. 

At my next appointment, she told me there were a few strange (but not wildly so) markers in my test results that she felt needed further explanation. She wrote a referral to the haematologist who had been treating my father up to the time of his death. 

Initially, the specialist was a little puzzled as to why I had even been referred to him. He felt that my results were not all that strange. However, he was at a loss to explain what might have been the cause of a couple of small abnormalities. One thing he was quick to point out was that there was no possibility that either Christine, (my sister who was also experiencing similar symptoms as me and had also been referred to him) or I, could have the blood cancer my father had battled as he was sure it was not familial. 

Not long after that appointment, I was set to participate in the annual Adelaide to Port Lincoln Yacht Race and Lincoln Week Regatta, something I had been doing most of my adult life. A few days before the race, the specialist contacted me saying that I needed to come into the hospital for an appointment. Bugger! It was scheduled on Day one of the regatta in Port Lincoln. 

I guess Patti and I knew that it was probably not going to be positive news, but we agreed not to jump to conclusions. After some discussion, we decided that I should do the race, fly back to Adelaide for the appointment and then fly back to Port Lincoln to finish the regatta and bring the yacht back to Adelaide. 

It was a nervous wait at the hospital to see the specialist. I must admit I was just a little concerned about what he was probably going to tell us. Eventually, we were called in and he informed us that the bone marrow biopsy had in fact confirmed that I had Myelodysplastic Syndrome / Myeloproliferative Neoplasm, a rare blood cancer. 

Blood cancer has had an incredible impact upon me and my family. My father Geoff was diagnosed with the same type in 2001 at the age of 56. I remember getting the phone call from my mum telling me of dad’s diagnosis and how at that stage, his specialist had told them that his life expectancy was around three years. It felt as though I had been hit in the stomach with a sledge hammer. Sadly, he passed away on Christmas Day 2011 the very same day Patti and I began our trip home from Canada.

In 2019, after being told by my doctor that it was the only ‘cure’ for my blood cancer, I had a stem cell transplant (shortly after my sister).

Surviving not Thriving is a term that my daughter uses to describe how many post stem cell transplant recipients tend to describe their new life. Of course, I am incredibly grateful to have had the transplant and to still be alive, but it has come at a pretty big price for me and Patti physically, emotionally and financially. 

Physically, I am unable to do so many of the things that I used to take for granted. Not only do I not have the strength or endurance, but I am also constantly worried that I will injure myself, particularly my back. I’m not sure I could cope with another fractured vertebrae. I have had four crush fractures to my vertebrae as a result of having to take steroids to deal with Graft Versus Host Disease, a complication that many transplant recipients have to deal with. The steroids I’d had to take had caused early onset osteoporosis.

Even the simple act of visiting friends and family or going for dinner or to the movies is extremely tiring and takes me a day or so to recover. Just staying up beyond ten thirty PM to perhaps watch a movie is a real battle these days. 

Emotionally, I may appear to be unchanged to friends and family, but I carry a huge burden of guilt for what I have put them through, especially Patti whose life has been irrevocably changed. The plans we had made, like travelling overseas again, have all been put on hold and who knows if I will ever again have the confidence to do so. 

I also worry about what will be the next obstacle I may be forced to clamber over and whether or not I have it in me to do so. Patti and I are now hyper-vigilant to anything that seems out of the ordinary and worry over things that are probably not all that bad. I tend to blame everything on the transplant, convinced that it is all collateral damage such as the headaches that wake me up nearly every night at the same time or the issues that I am having with my right shoulder. 

Financially, we are nowhere near the level of comfort prior to me getting sick and then having to retire early. Yet again, the burden has fallen to Patti to continue working full time so that we can pay the bills. Luckily as a teacher she is reasonably well paid, but where once we did not have to worry at all about our finances, we now have to be a lot more careful. 

I loved teaching and working with children but unfortunately, not long after my diagnosis and as the disease worsened, I just could no longer manage the physical and mental demands of managing a classroom (many teachers say managing children can be a little like herding cats!). 

I knew I had to find something to occupy my time. What that would be I had no idea. 

The Turning Point

I never really had any intention of writing a book (let alone three with a fourth underway!). The idea for ‘The Secret of the Lighthouse literally came out of the blue. About two years ago, I woke up at around three am with the story pretty much fully formed in my mind. I must admit, when I woke Patti to tell her I had an idea for a children’s novel, she was less than impressed. When I got up later that morning after I drove Patti to work I sat down at the computer and began typing. 

The Secret of the Lighthouse follows a young boy, Sam, who is struggling with the recent passing of his father due to cancer. To help him deal with this situation, his grandparents take him on a holiday to the Yorke Peninsula, staying in one of the old lighthouse cottages in the fictional town of Mulloway Bay. It is based on the Corny Point Lighthouse. At night, Sam is mysteriously transported back in time and meets and makes friends with the two children of a former lighthouse keeper. The friends share a number of adventures. 

The writing process for my book was relatively smooth as I had a clear vision. I developed a synopsis and outlined each chapter before completing the first draft in three months, dedicating about three hours daily. After a couple of rewrites, I sought feedback from former teaching colleagues, receiving positive responses despite minor errors. To gauge the target audience’s reaction, I had my former teaching partner read it to her class, resulting in enthusiastic feedback and a strong connection with the students.

After facing little interest from Australian publishers, I contemplated self-publishing but found it expensive. A chance encounter with an old friend of my father, who had recently printed his autobiography locally at a reasonable cost, changed my mind. Encouraged by Patti, I ordered a hundred copies and, to my surprise, sold every copy within ten days through Facebook posts, even attracting buyers from my primary school days.

I have also finished writing a book about my diagnosis and treatment for blood cancer. This came about by chance after reading a book my daughter Alia gave me called ‘Mortality’, by Christopher Hitchens in which he documented his struggle with cancer. In the book, Hitchens talked about not being able to “…summon the memory of how I felt during those lacerating days and nights.” That same feeling also worried me. 

As I was approaching the three year anniversary of my transplant, I was struggling to remember what my family and I had been through, so I decided to write about it. The title of this book, ‘Not Dead Yet (I think I’m Getting Better)’ is a reference to a scene from Monty Python’s movie ‘The Holy Grail’ and was something my father would say whenever we would ask how he was feeling while he was dealing with blood cancer. 

Obviously, I wish that I never had blood cancer but I am incredibly grateful that my treatment and recovery has been successful. I recently celebrated the four year anniversary of my transplant as did my sister which is quite a milestone given that the worldwide statistics on survival rates are not as high as some would assume. My latest blood tests were all pretty normal and I feel pretty good. Sure, there are days when I’m less enthusiastic than other days but they’re getting fewer and further apart. 

To be honest I don’t really know what has been the biggest lesson I have learnt over the past four years, perhaps never give up as you just don’t know what the next day may bring.

Some advice that I would have for someone who is confronted with a life-altering event like mine is that the universe does not care, but thankfully there are plenty of people in your life that do. I am a pretty pragmatic person and when learning of my diagnosis I thought the best thing to do was trust in the science and the expertise of the team that was looking after me and to try and be as healthy as I could (like giving up alcohol!).

You also need to know that it will be a tough battle and there will be times when you might think that you just don’t have what it takes to get through it and that’s quite normal. I remember many times lying in bed when I had first been sent home from hospital saying to myself, “You have one job. Just get better.”

Something that has helped me through has been the love and care from my amazing wife Patti, family and friends along with the hard work and dedication of the doctors and nurses who have been treating me for quite a few years now.

Lastly, I would also like to mention that one of the real positives that has come of my family’s history with blood cancer has been the fact that my daughter Alia made it her goal to pursue a career in medical research. Not long after my sister’s transplant and just before mine she won a job with the haematology team at the Royal Adelaide Hospital as their transplant data manager and researcher. In the four years she has been working with them she has been involved in some significant research projects and has even presented some of her findings overseas at a major haematology conference. She has also just been awarded a scholarship to do a PHD, so I think that future blood cancer patients are in good hands.

Please consider donating blood and registering as a bone marrow donor. 

 

To contact Stephen in relation to his book ‘The Secrets of the Lighthouse‘, please click the link here.

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