A diagnosis of cancer in a loved one would be devastating for anyone, but if there is any person best able to cope with it, you would expect it to be a doctor. Not so, says Dr Azlan Kamalludin.
The 41-year-old Hospital Langkawi Emergency and Trauma Department head had the misfortune of having three of his loved ones diagnosed with cancer within the space of 10 months in 2013. First it was his father-in-law Mohd Yusoff Mohamed, then aged 64.
“It all started in early 2013 when my late father-in-law, who had just retired, was involved in a motor vehicle accident. Then he came to see me – I was at Hospital Sultanah Bahiyah in Alor Setar at that time as an emergency medicine specialist – complaining of pain in the right hip.
“Any usual person would think it was a soft tissue injury; it was treated as such and he was discharged after an x-ray was taken. Then after a few days, he complained that the pain was getting worse, which is unusual – the pain is supposed to get better.
“So we did a series of tests, and one of them was a CT of the abdomen, which we extended to the pelvic area. The next day I got a call from the radiologist, and any doctor will know, if you get a call from the radiologist, something is abnormal.
“They showed me the evidence of a pathological fracture on his right hip, which means that the fracture happened because of some pathology with the bone, not because he fell from the motorbike. Usually it’s caused by something eroding the bone.
“So we admitted him and further tests showed that he actually had multiple myeloma, which is a cancer of the bone and blood.”
Multiple myeloma occurs when plasma cells, which are a type of immune cell that make the antibodies that protect us against foreign microorganisms, become cancerous. Instead of producing protective antibodies, these malignant cells start making abnormal antibodies that harm the body.
In addition, because plasma cells are found mainly in the bone marrow, the uncontrollable multiplication of the cancerous ones crowd out the other healthy cells within the bone marrow, thus affecting their functions in the body.
There is no cure for multiple myeloma, but there are treatments that can help control the disease.
The Second Cancer
About two weeks after his father-in-law was diagnosed, Dr Azlan’s father came to visit his in-law in the hospital. During the visit, his father asked Dr Azlan how they detected his father-in-law’s cancer. Dr Azlan replied that they had done a series of blood tests to determine the diagnosis.
His father then asked him to do the same series of tests on him, even though he had no symptoms of any cancer. Dr Azlan agreed, even though he did not think it was necessary. His father, Kamalludin Abu Bakar, was then 68, a retired marketing executive who was very active in charity work involving orphans and single mothers.
“To my surprise, after five days, I got back the results for PSA – prostate surface antigen, which is a marker for prostate cancer – and it was high, very high,” says Dr Azlan, adding that while the normal PSA level can go up to about 4ng/ml, his father’s level was 64ng/ml.
“I called up the urologist and we did another series of tests, including a prostate biopsy, and it came back positive for prostate cancer. And the subsequent tests showed that the prostate cancer had spread to his bones.”
Similar to multiple myeloma, there is no cure for prostate cancer that has spread to other parts of the body; however, there are treatments that can help to slow and control the growth of the cancer.
The Third Cancer
Around the same time however, Dr Azlan’s then-37-year-old wife, Asfah Mohd Yusoff, started experiencing rashes on her body.
“We brought her to two dermatologists, who prescribed her creams, which was understandable at that time. But her skin started to get worse, it got so dry that it started waking her up at night because she was scratching herself.
“About six months after my father-in-law was diagnosed, he passed away due to complications from an infection. And four months after that, my wife’s symptoms started to get worse. She started to wake up at night feeling tired; after one flight of stairs, her pulse rate would jump up from 80 to 120; she became pale; and she started having fever,” shares Dr Azlan.
By this stage, Asfah’s symptoms had been going on for six months. “After the second day of fever, I was not feeling very happy, so we went to see another physician,” he says.
Although his colleague was initially reluctant to conduct any investigations as the fever had only been going on for two days – usually, further investigations are only done when a fever has persisted for two weeks without any known cause – Dr Azlan’s insistence that something was wrong led him to agree to an abdominal ultrasound.
This is because the first thing doctors think of when there is a fever of unknown cause is a liver infection.
However, on his way to arrange for the ultrasound, Dr Azlan bumped into a surgical colleague who felt that it had nothing to do with the liver, and instead, suggested that Asfah undergo a CT scan of the chest, abdomen and pelvis.
“So we actually did that. I still remember when they were scanning my wife, I was sitting in the CT room, and as the images showed up (on the computer), I could see a mass surrounding her heart; most doctors when they see that, they will think of cancer. So, unluckily, after we did a test, it was confirmed that it was Hodgkin’s lymphoma.”
After undergoing 12 rounds of chemotherapy, Asfah was declared to be in remission. Shares Dr Azlan: “My father is still well (and) doing his charity work. He is being treated with hormonal therapy to suppress the cancer. He refused surgery because he wanted a good quality of life. At this point, I totally agree with him.
“My wife has been clear for three years. She’s not on any medication now, just follow-up (with the doctor). She does have some side effects of the chemotherapy: her lung tissue has fibrosed (thickened), so she can’t take very deep breaths while exercising, and she also has a very rare side effect – some of her knee cartilage was destroyed, so she can’t kneel down on the floor.
“But other than that, she is fine.”
Dr Azlan, being the physician in the family, played a major role as a caregiver to his wife, father and father-in-law during the critical stages of their cancers. Not surprisingly, he was burnt out once things had settled down after about two years.
“So I requested to be transferred to Langkawi once my wife had finished her chemotherapy (and was able to carry out her usual activities) – just to clear my head because I was emotionally and physically exhausted,” he says, adding that his family remained in Alor Setar.
“I needed some time off to be alone for a while so that I could start to improve on myself, to be honest.” This included reading self-improvement and productivity books, meditating and learning how to run his department well, which he continues to do today.
Soon after transferring to Langkawi, Dr Azlan posted pre- and post-cancer photos of his wife and a short description of her cancer journey on his private Facebook page – they had not told many people about her cancer diagnosis while she was undergoing the treatment.
To his surprise, the post was shared and liked many times, and he was suddenly bombarded with a lot of questions on how he coped with his work and cared for her at the same time.
“One page became 14 pages of questions, then I told my wife, this is probably why God gave us this disease, people want to listen, so why don’t we put it in a book?” he shares, adding that there was even one occasion when they were in the airport and a stranger approached his wife asking her questions about her cancer journey.
“I initially was not thinking about whether or not I could do it. I just sat down and compiled the story into chapters, but I knew it would be edited a few times. So I came up with this Gantt chart. Every box is 1,000 words. I knew I had to write at least 55,000 words before I could stop.
“So, everyday I would go and write something and mark the boxes off, so at least that motivated me to finish,” he says, adding that he had three mentors who helped advise him on the book.
He would go everyday to the Starbucks at Kuah Jetty after work, and sit and write for about three to four hours. The staff at the coffee shop became so familiar with him that they would start preparing his usual drink as soon as he walked in.
Shares Dr Azlan: “I found joy in writing it simply because I could actually unload the weight and memories into the book and keep it away on the shelf.”
He adds that his main reasons for writing the book was so that people would know the story and benefit from it.
“Second, I want our daughters to know our story, because at that time they had no idea – we kept it from them. And third, I know it’s ego, but I want to be known as an author,” he says with a laugh.
On the weekends when he went home to Alor Setar, he would spend around four to five hours a day writing in his room. The book took about two to three months to complete, not including the editing and design process.