My Grandfather’s Short Yet Impactful Cholangiocarcinoma Journey

By: Bushra Majid

Most of my childhood was spent around my grandparents, who cared for me and my siblings. They would take us to school, help us with our homework, and teach us the good and bad, among many other things. I therefore have a lot of memories with them. They saw us grow from babies to adults and genuinely invested their retirement in making us responsible individuals.

My grandfather was a freelance writer and would spend hours on his computer jotting down his ideas and drafting meticulously ingenious writing pieces. He also inspired me to write, but I would only understand the joy of seeing my work getting published and read by people once I started doing it.

I was in my third year of medical school in early 2017 when I noticed he had started to look weak. He would tire easily and would attribute it to his increasing age. Nevertheless, he got his tests done, and everything looked normal. It was not until late August that we noticed his skin and eyes getting yellow. It concerned me and my elder sister, as he had his gall bladder removed many years back, and we were dreading the possibility of a malignancy.

I still remember my father getting the call from the doctor to discuss the results of the CT scan, giving us the diagnosis of cholangiocarcinoma. At that moment, everything felt unrealistic. It was not only difficult to comprehend the situation but also to come to terms with it. Time has witnessed how we struggled to find answers and a probable cure for my grandfather’s ailment.

Once the diagnosis had settled in, we had to plan for getting him relief from his jaundice, discomfort, and mental anguish. The ERCP was able to relieve his jaundice partially, as the gastroenterologist was able to gain access to only one of the hepatic ducts and place a stent in it. He would get infections now and then and was placed on heavy doses of antibiotics.

A month passed, and it felt like things might be static, at least for the time being. However, he continued to lose weight, experience night sweats, and had no appetite. It was distressing to see him unable to move around as he was getting weaker with every passing day. A man whom I had seen independent throughout his life, now bed-bound, was a sight ever so painful. This made him quite anxious as well. It was then that I realized that this was one of the most difficult aspects of a terminal illness. 

His diet was reduced to a few spoons only, so we would give him his favorite things even if he was taking a few bites. We would sit down with him after getting back from our college and talk to him about how our day had been. He would not say much, his eyes closed, but he would be listening intently, often smiling. It was heartbreaking, but I never saw him complain about anything.

He soon developed another major episode of sepsis that was followed by PTC to relieve the blockage. He had four bags attached to him at that time: two for his bile, a urinary bag, and another for ascitic fluid. This didn’t lower his spirits, even though as a family, it was not an easy sight. I had started collecting messages from our extended family, and would read them to him. He felt loved, connected, and contented.

We would often sing his favorite poem, “The Daffodils” by Wordsworth, his favorite verses were the ending:

For oft when on my couch I lie

In vacant or in pensive mood

They flash upon that inward eye

Which is the bliss of solitude

And then my heart with pleasure fills

And dances with the Daffodils

Soon, he was unable to go to his appointments, and so my sister and I would attend them. Once he had three appointments, from his gastroenterologist, interventional radiologist, and infectious disease physician. By the end of it, I was exhausted and emotionally drained. One of the doctors then directed us towards a palliative care doctor, and for us, that could have not been more than a blessing. That doctor sat us down, listened empathetically to all the challenges, and devised a more practical plan for my grandfather’s care. It was agreed that one of his colleagues would do home visits once a week or as needed and would be available on call or by email for any advice needed.

My grandfather passed away peacefully in his home, surrounded by his family. He has left behind his legacy in the form of his children, grandchildren, and various projects he initiated and executed to support his community.

I have had the opportunity to share our experience to guide people and caregivers through my writings, to raise awareness about Cholangiocarcinoma and do my own research on the statistics of this cancer in my country. It gives me nothing but absolute pleasure to be a part of CholangioConnect and give back. The Cholangiocarcinoma Foundation has inspired me to give in to the cause of guiding patients and their caregivers towards ease, comfort, and hope in their Cholangiocarcinoma journey.