One minute I’m resting comfortably on my hospital bed, the next I feel the chills creep up my spine and my whole body starts shaking uncontrollably. Freaking out, I reach for the nurse call button. But wait — what’s the Japanese word for “shiver” again?

I fumble for my iPhone to look up the word. The handset keeps slipping from my grasp as my trembling fingers attempt to type s-h-i-v-e-r. After what feels like an eternity, “furueru” flashes across the screen. I call the nurse.

It turns out I was experiencing the side effects of my treatment for a post-surgery complication. The nurse would have checked on me anyway if I’d pressed the call button earlier, but after weeks of an “intensive Japanese refresher course” in the hospital, my first instinct was to reach for Google Translate whenever a word or piece of medical terminology eluded me.

That was just one of many times that language became an issue during my six-week convalescence at Keio University Hospital in Tokyo after major surgery to remove a cancerous tumor.

I speak and write basic Japanese, thanks to three years of Japanese studies in college and a one-year stint in Tokyo as an exchange student 20 years ago. Although my kanji is rusty, surely I could wing it at a Japanese hospital?

Or so I thought.

In the realm of the unfamiliar

The inadequacy of my Japanese skills hit home the moment I stepped through the doors of Keio University Hospital. Other than words like “X-ray” and “CT scan,” every sign there was written in kanji only. Registration and admission forms and medical procedure information were also only available in the vernacular. Luckily, my Japanese buddy accompanied me for my pre-surgery tests and on admission day to help with the forms and briefings for test procedures.

When I went in for a CT scan, the radiologist rattled off a bunch of questions that went straight over my head. I presumed he’d asked if I have any allergic reactions to contrast (dye) injections. I just replied “hai” (“yes”) to everything. The only order I fully understood was to lift my hands over my head when he said “Banzai!” as I was wheeled under the scanner.

Several times I was asked “What kind of cancer do you have?” Er, how do you say “follicular dendritic cell sarcoma” (FDCS) in Japanese? It’s hard enough to explain in plain English.

Post-surgery, I had a meltdown after a traumatic episode with a nasogastric tube. The doctor shoved the tube up my nose, down my throat and into my stomach to suction out undigested food caused by gastroparesis, a post-surgery complication. Gagging and puking intermittently, I suffered a sleepless night and was on the verge of yanking off my IV drips and shuffling out of the hospital.

Eight days prior to that, I’d been host to a tumor the size of a honeydew melon, which is why I’d had to have 40 percent of my liver, gallbladder and several lymph nodes taken out. Post-surgery pain from the 30-centimeter Mercedes-badge-shaped incision on my abdomen, coupled with gastroparesis-induced stomach cramps, had me literally begging for painkillers. My hands and arms were bruised and swollen from the nurses’ repeated jabs to find a suitable IV insertion.

A normally assertive person, I couldn’t articulate my anxieties or questions due to my language limitations. With the exception of my surgeon, Dr. Taizo Hibi, who is fluent in spoken and written English, the rest of the physicians, radiologists, nurses and attendants could barely speak the language.

And the Japanese concept of privacy is nonexistent. On a typical day, a stream of folks would trickle into my room, aside from doctors and nurses: from groups of medical interns, who asked the same obligatory questions each time, to housekeepers who wiped down bed railings and table trays and cleaners who emptied the bins. It was hard for a light sleeper like me to get proper rest during the day or adequate “me time.”

Also, the conservative approach to treatment in Japan means most patients tend to languish longer in hospitals than they would in, say, the U.S. or Singapore, where hospitals can’t wait to discharge patients. Due to setbacks from post-surgery complications, my long recovery was affecting my sanity.

So why did I, a Taipei-based Malaysian, choose to seek treatment at Keio?

Firstly, FDCS is a rare cancer; less than 200 cases have been reported worldwide since it was discovered in 1986. To date, there isn’t a standardized treatment protocol. Most localized tumors are treated with surgical resection, while a lymphoma-type chemotherapy regimen is prescribed for metastatic tumors.

But surgeons from two prominent cancer centers in Taiwan assured me that the tumor was too large and risky to remove safely. Instead, my oncologists pushed for chemotherapy to try to shrink the tumor. But with a 50-50 success rate (for FDCS), and with healthy cells being destroyed in the process, chemo sounded less than ideal.

Then, a Japanese friend connected me with the Keio Cancer Center’s medical oncologist, Dr. Yasuo Hamamoto, and Dr. Hibi from Keio’s Division of Hepato-Pancreato-Biliary and Transplant Surgery. Dr. Hibi’s team specializes in “transplant oncology,” which combines highly advanced techniques of transplant surgery and surgical oncology to tackle seemingly intractable cancers considered unresectable using conventional methods.

A day after I sent my biopsy reports and CT scans to Keio, Dr. Hibi wrote to say my tumor is “potentially resectable.” I settled on Keio after consulting with my family and weighing up the options and the prohibitive cost — I had to fork out ¥9.5 million in advance payment since I don’t have insurance coverage in Japan. With my 6-year-old daughter and husband based in Taipei, Japan’s proximity to Taiwan was also a deciding factor.

Simple acts of kindness

“The good physician treats the disease; the great physician treats the patient who has the disease,” said the “father of modern medicine” William Osler.

From the get-go, my chief point of contact with Keio, Dr. Hibi — the embodiment of this credo — became my de facto interpreter, cheerleader and rock all rolled into one. Before I arrived at the hospital, he patiently entertained a flurry of email questions on medical issues, treatment options and hospitalization costs. On top of an already insane workload, he helped to register my hospital ID card and arranged for the pre-surgery test appointments.

Keio’s policy requires foreign patients without Japanese health insurance to use accredited medical travel support provider Emergency Assistance Japan Co. Ltd. I had to sign up for a medical interpreter provided by EAJ for a minimum of eight hours, a service that cost ¥51,840.

Dr. Hibi also lobbied on my behalf when Keio was initially hesitant to accept a foreign patient unless I opted for a private room. Apparently this reluctance was down to the fact that a foreign patient had once gotten into an altercation with a Japanese patient in a shared room due to cultural misunderstandings.

“To me, there is no difference between Japanese and foreign patients,” said Dr. Hibi, one of the few liver transplant surgeons in Japan who has practiced in the U.S. “As a surgeon, I only wanted to take that tumor out, whether you do it here or at another hospital.”

And that’s just what Dr. Hibi and his team did: The tumor was successfully removed with what’s called a negative margin, meaning no cancer cells were left behind. For the next three years, I need to take CT scans every four months to monitor for any possible cancer recurrence.

Pre-and post-surgery, Dr. Hibi took the time to explain every procedure and any potential risks in detail, and encouraged questions. On the morning of surgery, his reassuring words and gentle pat on the hand allayed my anxieties. After surgery he checked in on me regularly, with his usual warmth and attentiveness. And he was always reachable, whether in person or via email.

The chief residents assigned to my care were gems too. Gentle and with a quiet demeanor, Dr. Takuya Minagawa was receptive to my needs and tried his best to communicate in a mix of Japanese and halting English. Dr. Tsunichi Imai would drop in occasionally after hours for friendly banter that always cheered me up.

Apparently, the likes of Dr. Hibi and his team are something of an exception. Friends assure me that Japanese physicians are not exactly renowned for their bedside manner.

The nurses’ dedication, compassion and patience bowled me over. Simple acts of kindness like giving me a wipe-down or a hair wash in the early recovery days were great morale boosters. Despite their busy shifts and my limited Japanese, they constantly tried to engage me in conversation. Friendly and warm, nurse Kawabe and I shared our mutual love for Japanese literature. Easygoing nurse Kawata loved the sounds of Miles and Coltrane wafting through my room, though he confessed to being intimidated by jazz.

Flexible visitor hours and rules meant family and Tokyo friends’ good company helped relieve the punishing cycles of anxiety, pain and frustration.

In hindsight, the good memories at Keio far outweigh the language frustrations. But for anyone unfamiliar with the language and culture, the whole experience can be a lot to take in — particularly if this ordeal is compounded by the added stress of having to undergo complex, high-stakes medical procedures.

Siok Hui Leong is a Taiwan-based journalist who has written for publications in the U.S., Japan, Singapore and Malaysia during her two-decade career. Foreign Agenda is a forum for opinion on issues related to life in Japan. Do you have any experiences as a patient in Japanese hospitals that you would like to share? Send your stories to community@japantimes.co.jp.

Keio rushing to meet non-Japanese needs

Keio University Hospital is one of 28 Japanese hospitals accredited by Medical Excellence Japan (MEJ) as providing “highly attentive medical care and advanced medical treatments” for foreign patients (see www.japanhospitalsearch.org).

Part of the Ministry of Economy, Trade and Industry, MEJ’s role is to support medical tourism initiatives in Japan and expand the country’s medical technologies abroad.

Keio’s interpretation of “medical tourism” is when a foreign patient travels to Japan to seek advanced or lifesaving treatments unavailable at home.

“For example, our Center for Preventive Medicine does not accept tourist groups, and the number of daily patients is restricted to allow thorough one-on-one examinations,” explained professor Yuko Kitagawa, the hospital’s vice director general for international initiatives, in an e-mail.

As part of its internationalization efforts, Keio launched several initiatives in 2016, including a survey to ascertain each department’s ability to handle foreign patients, identify shortcomings and draw up strategic plans to become more foreigner-friendly. In November, the Hospital Administrative Office designated four staff members to be the first points of contact for foreign patients.

Survey results showed that most of the departments were equipped to handle foreign patients, including some that were already actively treating non-Japanese in the areas of advanced cancer care, infertility and for autoimmune disorders. Most physicians — and a small number of clinical technicians and nurses — can communicate in English. Some of the radiological equipment in the hospital has multilingual features.

However, Kitagawa said: “We lack sufficient resources to offer 24-hour interpretation and printed information in foreign languages. Therefore, we request international patients to arrange a medical interpreter in order to ensure patient safety and quality care.”

Currently, Keio’s policy requires any foreign patient without Japanese health insurance to sign up with medical tourism support company Emergency Assistance Japan Co., Ltd. EAJ provides interpreters and arrange medical visas, hospital referrals and appointments, travel logistics and accommodation. Services can be tailored to a patient’s specific needs. EAJ and JTB are the only two MEJ-certified medical travel support providers in Japan.

On Keio’s part, plans in the pipeline include: implementing bilingual Japanese-English signs in the new hospital building (scheduled to open in 2018); installing medical interpreting software; arranging 24/7 phone contact with medical interpreters; introducing language training for staff; and preparing multilingual medical questionnaires, brochures and hospital information in foreign languages.

In a time of both misinformation and too much information, quality journalism is more crucial than ever.
By subscribing, you can help us get the story right.