The Michael Flannery Story

Foreword: What I Learned from Michael’s Story

Michael’s story is a great example for newly diagnosed patients who feel as though their future has been abruptly ripped away by a cholangiocarcinoma diagnosis.

He found a way to see his diagnosis as it was, not as he feared, which gave him the space to see possibilities beyond what seemed unbeatable. He found his rhythm and began to look beyond the statistics that once paralysed his momentum.

As you read Michael’s story, you won’t just read the words—you’ll feel how he adapts and changes. You will sense his thoughtful deliberation and strength.

His journey exemplifies the importance of facing obstacles clearly—to see them as they are, not as we fear. This is how we begin to see possibilities within and create the space to move forward.

You might be thinking, “Sure, Steve, that’s a simple concept, but maybe it was easier for him—maybe he just got lucky.” Let me stop you there. There’s a saying, “You make your own luck,” and no one knows their true capacity until they pick themselves up, shift their perception, and change the angle of their approach. You will probably have to do this several times—just get back up and regain momentum, no matter how small or insignificant it may seem. You just have to keep leaning into it, or life will lean back even harder. Momentum is magic, even if it’s only in your mind.

Michael’s ability to get back up and find routine and strength amid treatment demonstrates how critical control and normalcy are during adversity. His experience offers valuable lessons in resilience and creative persistence, showing us that even in our darkest moments, we have the power to shape our thoughts and our path forward.

His story is a testament to the strength that comes from getting out of our own way and allowing our potential to rise up without restriction. Michael gave his ‘hope’ a chance to breathe and find its reality.

That’s how we made it to the moon, how Edison invented the light bulb, and how we continue to do today what was believed impossible just yesterday. We are all in this together, forging a pathway between the improbable and the impossible, and then sharing it with those who follow.

Michael, thank you so much. I feel very privileged and appreciative that you allowed us into your life. I see how much we have in common.

Now, I’ll hand you over to Michael to share his story.

Steve

Symptoms:

In May 2022, I was diagnosed with Intrahepatic Cholangiocarcinoma. The doctors found a 9 x 5 cm lesion on my liver, along with metastases in my lungs and lymph nodes.

The diagnosis was coincidental. I had gone to the emergency room with acute pain under my right ribs, which remains undiagnosed to this day. During the investigation, they discovered that the lesion had been present on a scan done 12 months earlier, but it was not noticed at the time.

Diagnosis and Initial Treatment

In May 2022, my life took an unexpected turn when I was diagnosed with intrahepatic cholangiocarcinoma. The initial shock was overwhelming, and the fear of the unknown loomed large. But once the dust settled, I knew that the next crucial step was choosing an oncologist who would guide me through the complex and daunting landscape of cancer treatment. This decision was pivotal. I needed someone not only with expertise in treating intrahepatic cholangiocarcinoma but also someone with whom I could build a relationship based on trust and open communication.

Contrary to the common perception that private healthcare offers superior service, my wife and I chose the public healthcare system. The care provided was exceptional, and the oncologist assigned to my case showed genuine interest and dedication, which made all the difference. I was fortunate to have access to both public and private healthcare options, thanks to my private health insurance and coverage by the Department of Veterans’ Affairs (DVA). Working at the treating hospital also made this decision easier, as I was familiar with the staff and confident in the quality of care available.

Accessing New Treatment – Durvalumab

One of the newer treatments recommended to me was Durvalumab, an immunotherapy drug. Although it was relatively new for treating cholangiocarcinoma, the hospital managed to secure it for me through a compassionate use program. This opportunity gave me hope, as Durvalumab had shown promise in other cancers by harnessing the immune system to fight the disease. The hospital’s support in navigating this option reassured me that I was in the best possible hands.

Interestingly, Durvalumab had only just become available in Australia for cholangiocarcinoma, following a research paper detailing trials that was released the previous week in the New England Journal of Medicine. My oncologist even remarked that it was a fortunate time to be diagnosed with this cancer, given the timing of this new treatment’s availability.

Cisplatin vs. Carboplatin

Choosing the chemotherapy drugs was another critical decision. My oncologist explained the differences between Cisplatin and Carboplatin, both of which are used in treating cholangiocarcinoma. Given my pre-existing nerve damage from sciatica and hearing loss from my 23 years in the army, the choice was even more complex. Cisplatin, known to be more effective, posed risks of exacerbating these conditions. We ultimately chose Cisplatin, balancing the potential effectiveness against the increased risk of side effects.

Dealing with Nerve Damage and Chemotherapy

The chemotherapy treatments heightened my awareness of nerve damage, a side effect that was particularly concerning given my pre-existing sciatica. The tingling and numbness in my extremities were constant reminders of the toll the treatment was taking on my body. These symptoms required careful management and frequent communication with my healthcare team to adjust my treatment plan as needed.

The Experience of Chemotherapy

Spending around six hours in the chemotherapy chair every three weeks became a routine part of my life. Surprisingly, the time spent in the chair wasn’t as challenging as I had feared. It provided a quiet space for reflection, reading, and even connecting with others undergoing similar treatments. However, the process of having a cannula inserted every three weeks out of four was daunting. The repeated needling was a stark reminder of the ongoing battle I was fighting, and it added an additional layer of discomfort to an already taxing process.

The Role of Steroids

Steroids became an essential part of my treatment regimen, primarily to manage side effects like nausea and to boost my energy levels. They significantly improved my overall well-being, especially in combating the fatigue associated with chemotherapy. However, I was conscious of the potential long-term side effects, such as weight gain and mood changes, which needed careful monitoring. In fact, I gained 10 kilos in six months. My medical team reassured me that there would be time to address weight loss after the treatment. The three days following steroid administration were particularly productive, as the increased energy allowed me to accomplish a lot. With treatment occurring almost weekly, along with regular blood tests and consultations with my oncologist, time seemed to pass quickly.

Establishing a Routine

Creating a daily routine became essential for managing both the physical and emotional aspects of my treatment. This routine included regular meals, light exercise, and scheduled rest periods, which helped me maintain a sense of normalcy and control. It also allowed me to effectively monitor my symptoms and overall health, making necessary adjustments to better cope with the treatment. I made it a habit to go to the beach six days a week, where I walked 5 kilometres each day and did Pilates. This physical activity was not only beneficial for my body but also provided a mental escape. I also indulged in watching more Netflix than I probably should have, but it was a comforting way to pass the time and distract myself from the challenges of my illness.

Family and Friends

Navigating relationships with family and friends during this time was particularly challenging. Sharing details about my diagnosis and prognosis was often overwhelming, and I struggled to discuss my situation without becoming emotional. At the time, I was grappling with the reality that my life expectancy might be severely limited. I was diagnosed in May, and with my 59th birthday approaching in October, I was hopeful to see that milestone but uncertain about reaching 60.

What made it even more difficult was the thought of breaking the news to my extensive network of friends, many of whom I had known for years and across various stages of my life, including my 23-year career in the army and numerous relocations. The prospect of having deep, emotionally charged conversations about my uncertain future was daunting. It often felt easier to share just a few basic details and postpone more in-depth discussions for a later time, hoping for a moment when I felt more emotionally equipped to handle them.

This hesitation was partly because I didn’t want my condition to dominate our conversations or become the focal point of our interactions. I wanted to maintain a sense of normalcy and avoid the pity that sometimes comes with such revelations. Moreover, I was still processing the information myself and coming to terms with my new reality, making it hard to articulate my thoughts and feelings clearly to others. Despite these challenges, the support from family and close friends became an invaluable source of strength. Their understanding and willingness to give me space when needed, while also being there for support, helped me navigate this difficult period. In hindsight, I realize that these connections were crucial not just for emotional support but also for maintaining a sense of identity and continuity amidst the upheaval brought on by my diagnosis.

Refining My Realities

After my diagnosis, one of the first pieces of advice I received was to get my affairs in order. This meant addressing a multitude of practical matters that I had previously managed alone, such as handling our finances, maintaining our cars, managing home upkeep, and overseeing our insurance and bills—essentially, all the day-to-day responsibilities were under my purview. It became imperative to transition these responsibilities to my wife, which involved changing many things into her name and teaching her how to manage the banking and other financial tasks. This process was not just a logistical challenge but also an emotionally charged one, as it forced us to confront the reality of my situation.

In addition to these practical adjustments, we had to update our wills, sign superannuation forms, and even consider funeral arrangements—tasks that are sobering and emotionally taxing under any circumstances, but particularly when done under the shadow of a terminal illness.

Another significant undertaking was dealing with the physical accumulation of a lifetime. Over the years, I had amassed a considerable amount of tools, equipment, camping gear, spares, and various odds and ends in our garage. Our house was also filled with personal items from my army career, along with numerous photos and memorabilia. I vividly remember going through my father’s belongings after he passed away and didn’t want my wife and sons to face the same daunting task. So, over several weeks, I took multiple large trailer loads to the tip, held garage sales, and gave away a lot of items to friends. I also sorted through photos and memorabilia, deciding what to keep and what to let go.

This process was perhaps the most heartbreaking part of preparing for the future, as it involved not only parting with physical items but also confronting the reality of impermanence and the passage of time. Yet, it was also a clarifying experience, revealing just how much unnecessary ‘stuff’ I had accumulated. While it was difficult to part with many things, the process also provided a certain peace of mind, knowing that I was easing the burden on my family.

These actions were not just about preparing for the inevitable but also about ensuring that life could continue smoothly for my family in my absence. It was about giving them the tools and knowledge to carry on and ensuring that the emotional and logistical chaos often left in the wake of a loss would be minimized. This process, though painful, was a crucial part of my journey in coming to terms with my diagnosis and preparing for the future.

The First Three-Month Scan

The anticipation leading up to the first three-month scan was overwhelming. This scan was a crucial milestone, serving as a key indicator of how well the treatment was working and whether the cancer was responding. The days leading up to it were filled with anxiety and fear, as I couldn’t help but imagine the various possible outcomes.

When the day of the scan arrived, I went through the familiar motions of the procedure, but the waiting afterward was excruciating. The oncologist’s review of the results brought a complex mix of emotions. There was a sense of relief and cautious optimism, tempered by the understanding that this was just one step in a long journey.

The good news was a reduction in the size of the primary tumor, from 90 mm to 55 mm. Even more encouraging was the fact that the metastases in my lungs and lymph nodes were no longer recognizable. These results were more than just a statistical improvement; they were a lifeline, a tangible sign that the treatment was having a positive effect.

Hearing that the cancer had not only stopped progressing but had actually regressed in some areas was an indescribable relief. It was like a weight had been lifted, if only temporarily. For the first time in months, I felt a spark of hope—a belief that perhaps there was more time, more opportunities to make memories, and more chances to live life with my family. It’s impossible to overstate how relieving it was to receive this news; it felt like a reprieve, a chance to breathe and regroup.

This chapter marks a significant turning point in my journey, where I transitioned from initial shock and confusion to a more structured and proactive approach to managing my health. The decisions made during this time, from choosing treatments to establishing routines, laid the foundation for my ongoing battle against cholangiocarcinoma. My story is one of resilience, deliberation, and hope, and I hope it provides encouragement to others facing similar challenges.

Life Goes On

When I first got my cancer diagnosis, I thought my future would be a lot shorter than I had ever imagined. But as time went on, and the initial treatments were more successful than expected, I realised that my journey might not be over as quickly as I had feared. That left me in a strange place—unsure of what to do next or how to move forward.

I had a whole medical team surrounding me, including oncologists and surgeons, each with their own opinions and approaches. Early on, this felt overwhelming. I was trying to absorb a lot of information about my treatment options and future outlook, and it wasn’t easy. But after the early success of the chemotherapy and immunotherapy, I decided to focus on what was working. I didn’t want to get ahead of myself worrying about other treatments when the current plan was showing results. My oncologist agreed with this approach, and we’ve stuck with it ever since.

Living in the Moment

Instead of worrying about what the future might bring, I found a lot of peace by focusing on the present. Those first nine months of chemotherapy and immunotherapy were tough, as many of you can probably relate to. The treatment schedule had me in the hospital for a day a week, three weeks out of every four, with a cycle of good days and bad days. Some days, I had energy and felt relatively normal; other days, the side effects of treatment knocked me down. So during those first nine months, I learned not to set too many tasks for myself. I made it a point to enjoy time with my family and friends whenever I could and to rest when I needed it.

Once I completed chemotherapy and transitioned to monthly immunotherapy maintenance, I felt more freedom to start planning again. That’s when I decided to take a big step—I planned a five-week trip to Germany to visit my son and granddaughter. It was 11 months after my diagnosis, and the trip turned out to be incredible. After the initial diagnosis, I didn’t think I’d ever get to travel again, so this was a special moment for me. Of course, traveling with cancer came with its own challenges. I ran into issues with getting travel insurance and carrying prescription drugs internationally. I didn’t have time to get clearance for my opioids while traveling through the Middle East, but I took the risk and carried them anyway.

Finding Peace in the Process

Like many people undergoing chemotherapy, I faced some complications. I had pre-existing nerve damage from an old back injury, and the chemo worsened it, leading to peripheral neuropathy in my hands and feet. My tinnitus also got significantly worse. It’s now been 18 months since I completed chemo, and while the neuropathy and tinnitus still linger, my overall health is better than I expected at this stage.

My oncologist is happy with my progress and says I’m ahead of the curve. However, I still feel some pressure to explore surgical options, especially since the cholangiocarcinoma foundation and forum lean toward surgery as the best choice. To keep peace of mind, I continue to research those options, but for now, I’m content with sticking to the immunotherapy regimen, which is working well and has the full support of my oncologist.

I’m able to live a very full life, and most people around me have no idea that I’m living with cholangiocarcinoma. Honestly, I don’t think much about it either, except for the day before treatment or when I’m due for my three-month scans. I know that things can change quickly, but I’ve armed myself with knowledge, and I’m ready to adapt if needed. I’ve also followed the advice of others and made sure I’m informed about the potential paths my treatment could take.

Genomic Testing and Clinical Trials

One of the most empowering steps in my cancer journey was accessing genomic testing. It’s truly been a game-changer, opening up new possibilities that weren’t even on my radar before. Genomic testing analyses the specific genetic mutations in your tumour, allowing for more precise, targeted treatment options. This is especially significant for cancers like cholangiocarcinoma, where breakthroughs in targeted therapies are beginning to show real promise.

In my case, genomic testing revealed that I have an IDH1 mutation, which is the most common mutation found in cholangiocarcinoma. This discovery gave my oncologist and me a much clearer understanding of the unique characteristics of my cancer. Armed with this information, we could begin considering treatments tailored specifically to this mutation. Targeted therapies designed to inhibit IDH1 have been developed and tested in clinical trials, offering new hope for patients like me.

While my current immunotherapy treatment is still effective, knowing that there are drugs targeting the IDH1 mutation provides a reassuring backup plan. However, these drugs are quite expensive and not yet widely accessible. Currently, they’re available but come with a hefty price tag, which makes them out of reach for many. Hopefully, by the time I need them, these targeted therapies will be added to the Pharmaceutical Benefits Scheme (PBS), making them more affordable and accessible.

It’s an exciting time in cancer treatment, with new targeted therapies emerging based on genetic insights like mine. Even though I haven’t had to join a clinical trial yet, the option is there if my current treatment stops working. Having this additional layer of knowledge gives me a sense of control over my journey, and it offers hope for the future, knowing there are options waiting in the wings if I ever need them.

No Bucket List Required

I’ve come to terms with my diagnosis in a way that doesn’t require me to rush into ticking off a bucket list. I’ve lived my life fully, made memories with my loved ones, and continue to do so, even as I navigate cancer treatment. I know that things can change quickly, but I’m at peace with where I am. I don’t live in fear of the next scan or the next treatment cycle. Instead, I focus on the here and now, living my life as fully as possible while staying prepared for whatever comes next.

This journey has taught me that it’s not just about survival, but about living well with the time you have. Thanks to the advancements in treatment, genomic testing, and a supportive medical team, I’m able to live a rich, fulfilling life—even with the uncertainty that comes with cancer.

In the end, I’ve never felt the need for a bucket list because I’ve already lived the life I wanted. I’m at peace with how things have gone and ready for whatever comes next.

Michael

Michael Joins
Light Australia Green 2025

Light Australia Green is Celebrating World Cholangiocarcinoma Day

Navigator Journal and Digital Toolkits

Do you have your free Patient Navigator?