In the shower one day, long-term Tokyo resident Neil Grainger noticed that the birthmark on his back had changed color. Concerned, he went to the local clinic, but the doctor assured him it was nothing to worry about.
Three or four months later, the mole began to bleed. “I could only wear dark-colored shirts in case it bled during the day,” he says. “If I banged into something, I would get blood on my shirt.”
The 44-year-old Briton then went back to the doctor, and on July 17 last year, after undergoing a series of tests, he was diagnosed with a malignant melanoma.
Then, just a couple of days later, Grainger was dealt another huge blow.
“I got a phone call from the hospital on the Friday and they said, ‘You have got to come back in. We have done some blood tests and have found something else.’ So within three days I found out I was HIV-positive as well. I was diagnosed with cancer on the Wednesday and HIV on the Friday.”
On July 31 he was admitted to hospital and the tumor was removed. Around the same time, he also underwent a plastic-surgery operation where skin taken from his buttocks was grafted onto the area of his back where the cancerous tissue had been.
“I didn’t know it at the time, but [the tumor] was like an iceberg growing underneath. It was one of the largest-ever skin cancers taken from someone in Japan — over 5 cm in depth.”
Grainger says that although he was not aware of it at the time, he ticks many of the boxes for vulnerability to skin cancer.
“I had a birthmark — having a birthmark over a certain size increases one’s risk. Also, I am a Brit living in Japan and not used to the UV here.”
He adds that although he exposed himself to the sun, it was never excessively.
“I have never been a sun freak. That doesn’t mean to say I have never spent days at the beach or the pool, but I am not one of those people who spent a lot of time sun tanning — not at all.”
Although the surgery was successful, Grainger’s troubles were far from over. The cancer had spread to his lymphatic system, and in September he had the lymph nodes on the right side of his body removed.
To prevent the cancer from returning, he also had to undergo an extensive program of immunotherapy. Cancer immunotherapy involves stimulating or strengthening the patient’s immune system in the hope it will reject and destroy tumors. It is a less aggressive form of treatment than chemotherapy, but Grainger still had to endure a harsh regimen of six rounds of multiple painful injections. Each round lasted two weeks and required six jabs in his back and three in his arm daily.
The operations and immunotherapy meant Grainger was forced to take increasing amounts of time off work, which created a whole new raft of problems.
From 2005 until last month, Grainger worked full-time as an English tutor at Waseda University International Corp., a language-school company with more than 200 employees whose main business is supplying additional English courses to Waseda students.
Grainger says that in 2012, despite undergoing two major surgeries, he managed to work about half of August, but was forced to take all of September off. This, he explains, was in part due to a peculiarity in the Japanese health insurance system that discourages workers from taking half-days off sick.
This quirk meant that if he took off half a day, he would get only half a day’s wage, but if he took off a full day, he would be compensated with two-thirds of a day’s pay. Therefore, on days he had to go to the hospital in the morning to receive his injections, he felt compelled to take the full day off, especially considering his mounting medical bills.
Then, in February the following year, just seven months after being diagnosed with cancer and HIV, Grainger was shaken by more bad news: Waseda International “told me they were not going to offer me another contract.”
“At this point, I was actually cancer-free,” Grainger explains, “and I was just having treatment to stop the cancer coming back, so their cutting me off seemed incredibly harsh — basically, they were saying I either stopped having the treatment that was preventing the cancer coming back, or I lost my job.”
Upon hearing the news, Grainger says he was shattered. His job at Waseda was not just some part-time gig to earn a bit of extra pocket money, but his career. And prior to the cancer diagnosis, his future at the company had looked bright. In 2011 he was promoted to senior tutor and took on additional responsibilities outside the classroom, such as teacher training and program administration. According to Grainger, at that time he was promised he would be moved onto a three-year contract once this one-year contract expired.
His work record was also blemish-free, he says. “I have been pretty much a golden boy since I have been there: zero complaints. I was constantly the one who was told I was giving more to the program than anyone else.”
A formal evaluation of Grainger’s work performance was carried out by Waseda International in April 2012 — just three months before he was diagnosed with cancer. On the Employee Evaluation Report, Grainger’s overall work performance is rated as “excellent,” the highest grade.
To quote from the “supervisor evaluation” section of the report: “Neil, you have made a very good transition from Tutor to Senior Tutor. You are very enthusiastic and keen to take on new tasks, which is great. You work well with other Senior Tutors and have already presented a workshop successfully. . . . It has been great to see you volunteer to take on the Lesson Help BBS project. . . . I hope you keep doing a good job as a Senior Tutor next year.”
These comments suggest that Waseda International was not only more than satisfied with Grainger’s work performance, but that they saw him as having an important role to play in the future of the company.
Yet this all changed after Grainger was diagnosed with cancer, he says, and from that point on, management began to look for ways to cut him loose. “They just don’t want people on their books who are a bit of a burden to them,” he says.
According to Grainger, after he launched a campaign to convince the company to change its mind, Waseda International finally relented and decided not to let him go at the end of March when his contract expired. But rather than being given the longer, three-year senior tutor contract he had been expecting, the company put him on a six-month one which, Grainger says, was basically an “enforced leave of absence” and a steppingstone to getting rid of him altogether.
“[Waseda International] fired me, basically,” he says. “So, I wasn’t only fighting for my life, I was fighting for my job as well. Clearly they weren’t on my side. I felt incredibly disillusioned and disappointed, because I had worked so bloody hard for them over the years.”
As the battle to keep his job dragged on, Grainger faced another bombshell: A routine CT scan in April revealed the cancer had returned — and spread.
“On the day I was supposed to get my forms telling my work [that] I was fit to go back and my treatment was finished, the doctors said they had found four tumors in my lungs. That was pretty tough.”
In the diagnosis and treatment of cancer, stages from 0 to IV are commonly used to classify the progression and severity of the illness, with Stage 0 being a noninvasive benign tumor and Stage IV being the final stage, where a tumor has metastasized, or spread, to other organs in the body. With the discovery of the tumors in his lungs, Grainger’s cancer was upgraded from Stage IIIB to IV.
“Up until that point I had been having injections to prevent the cancer coming back,” Grainger says. “From that point onwards, I needed to change to this toxic chemotherapy.”
To date, Grainger has undergone five courses of aggressive chemotherapy, which was administered intravenously while he was an in-patient at hospital. Aggressive chemo, which kills fast-duplicating cancerous and healthy cells, is notorious for its terrible side-effects, such as hair loss and nausea. However, Grainger says he been lucky not to have suffered those ailments.
“My problem has been terrible itching. It’s been unbelievable, to be honest. It’s like you are crawling with insects.” He has also experienced loss of appetite.
Grainger’s fears that his days at Waseda International were numbered were confirmed in May — the same month he began chemotherapy — when he received a “notice of nonrenewal” letter from the company. This document outlines the reasons his employment at the school was terminated.
To quote: “A decision regarding any further contract renewal would be based on work attendance and the determination of Mr. Grainger’s performance of work duties. Based on the doctor’s certificate dated May 7, 2013 Mr. Grainger is unable to work from May 1 to the end of July.
“WIC [Waseda International Corp.] has therefore determined that Mr. Grainger is unable to satisfy attendance and work duty requirements detailed in the employment contract.”
In response to written questions, Waseda International said they are unable to talk to mass media about specific employees but were willing to give general comment about company policy.
Yukihisa Nakao, managing officer of the company’s language education department, said the decision to renew an employment contract or not is based on work performance and attendance, and “not on whether absences are due to an illness or other circumstances.”
“I would therefore like to stress that any belief that our company would terminate an employee’s contract due to illness is mistaken,” he says.
Mistaken or not, Japanese law does allow employers to terminate employees who are too ill to work.
“Management can legally fire someone if they are too sick to fulfill work duties,” says Louis Carlet, general secretary of the Zenkoku Ippan Tokyo General Union. “The law is cruel on this point.”
Carlet says the key issue for Grainger from a legal standpoint would be whether there was a “reasonable expectation” of contract renewal.
Carlet thinks Grainger would have a good chance of overturning the dismissal if he went to court.
Grainger would have to show that despite the six-month fixed-term contract he was placed on, he still had a reasonable expectation that it would be renewed, Carlet says.
This would be “because of the many one-year renewals” he had been given in the past, “because other teachers are usually renewed and because the renewal process is a formality. Court might take a couple years, but if he wins, he would get all back pay.”
Grainger would also have to convince the court that he did not miss enough days to constitute nonfulfillment of work duties, he adds.
Whether he has a case or not, the cold, hard reality for Grainger is that, as of Sept. 30, when his contract expired, he is not only extremely sick but also jobless, with little hope of future employment. And now, after undergoing 14 months of costly cancer treatment, he is struggling to make ends meet.
“All of a sudden, I was facing three operations in a month, plus a session of chemotherapy,” he says. “The money you just have to find from nowhere is horrendous.”
Although Grainger was enrolled in a private health insurance program through his job with Waseda International, that only covered 70 percent of his skyrocketing medical bills. “It works fine if you have to go in for a small operation, or you have a cold or something, but when you are in hospital every month over and over again, earning less, paying out more, it is a double whammy. Thirteen months of that has taken its toll. So, basically I am desperate for money — every month is a constant struggle.”
Grainger says he has received no additional support from Waseda International, such as offers to help out with outstanding hospital bills. He also says that management has shown a total lack of empathy with his situation. “They just don’t care. They haven’t visited me in hospital, or even sent flowers. They have never even asked me how I am.”
He stresses that although he feels very let down by the management at Waseda International, his fellow teachers at the school have supported him 100 percent.
Nakao from Waseda International says a health and safety committee is in place at the school to “promote the prevention of health problems and to maintain the health of employees.”
“Our company employs staff members who are responsible for personnel-related duties, and who are able deal with health — including mental health — concerns of employees at any time,” he explains. “With regards to any employee who is hospitalized due to a nonwork-related illness, it is not a common practice among Japanese companies to have a company representative visit the employee in hospital or to send flowers. Therefore, it is not fair to say that the company does not provide support to its employees just because these specific actions were not taken.”
Despite the huge series of challenges he has had to face, Grainger remains surprisingly upbeat. “I’ve got a really good support network here and some really good friends and everyone has been amazing and helped me out a lot,” he says. “Cancer has been like an affirmation of my friendships. It sorts the men out from the boys — you know who your friends are. I’ve never been a person who has been particularly comfortable asking for help from other people, and then suddenly I was in a position where I had to. I was overwhelmed.”
Good friends aside, there is no denying that Grainger is staring death in the face. “They have virtually told me my survival chances are zero. If you get malignant melanoma, you die of it. That isn’t to say you die of it the next day, or the next week, or even the next year. I would have been dead already if I hadn’t come to hospital when I did. I would have been dead before Christmas — 100 percent.”
Yet Grainger says he no longer lives every day in fear of dying. “I don’t really think about it like that anymore. Everything is a bonus.”
In fact, Grainger says, in many ways, his cancer has been life-affirming — even liberating.
“Having to face it and realize that you are a human being, a living creature, and whether you die sometime this year or sometime next year or in a few years’ time, or when you are supposed to die of old age, whenever that may be, you will eventually die.
“Everyone has to face it at some point in their life, and once you have done that psychologically, it is a freedom. It sets you free.”
Walk the line and support Grainger
On Sunday, Nov. 3, Neil Grainger and a group of his friends are planning to take a 40 km walk around the Yamanote Line in Tokyo.
The event is a fundraiser to help cover the mounting cost of Grainger’s medical expenses for his cancer treatment and to raise money for several cancer charities.
People can get involved by sponsoring one of the walkers or making a donation online.
A charity walk/run is also being held the day before the Yamathon, on Nov. 2, in Sandwell Valley in the English West Midlands.
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