Knock knock. Who’s there? Doctor.

Before we set off for Japan, it seemed my greatest, most instinctive fear, was of one of us falling ill or getting injured, and not knowing how to contact or communicate with doctors.

I sent out several feelers on the subject, asking for guidance from acquaintances living in Japan. One friend of a friend gave me a link to English-speaking doctors in Tokyo. This put me faintly at ease, but always at the back of my mind was the maternal dread that one of my children would need medical help, and my failure to speak Japanese would somehow hinder assistance.

Anyway, waddya know, I have actually had to use medical services here in Tokyo after all, so maybe I wasn’t being paranoid. Except it wasn’t for the children, it was for me.

Four days before we set off for Japan, I visited my GP in the UK with symptoms that had been niggling me. “Hmm, she said. “I can’t make a complete diagnosis. I’ll refer you.”

“But I’m going to Japan on Monday, for 11 weeks,” I said. She looked at me, and in the next few seconds there was a silent dialogue between us that went along the lines of:

Me: I know, I’m a twit. Why did I leave it till today?
Her: Well, here’s a pickle.
Me: You’re a doctor. You can make it all better.
Her: Let me think, let me think…

“Why don’t you see a doctor in Tokyo?” suggested my GP. “I’m sure they’re almost as good as ours.” (Okay, she didn’t say that exactly, but I’m pretty sure that’s what she meant.) Relief swamped my body. Of course! I had already researched English-speaking doctors! So off I went, my GP informing me that she would refer me in the UK anyway.

Only the day after we arrived in Tokyo, we whisked ourselves away for a flying tour of Sapporo, Noboribetsu and Hakodate.

In the spare moments I could find after the kids had gone to bed, I took a look at the link provided by my contact on English-speaking doctors. I visited websites and read details on clinics. I was unsure about all of them. I took another look at the link I had, and realised it was for a site that is something of a guide to Tokyo. A bit more digging on there provided the name of a local charity I thought might be able to help.

I emailed the charity asking them if they could recommend a relevant doctor for my concerns, and only a couple of days later I received a beautifully detailed reply, directing me to an International Hospital in the city.

An international hospital, eh? Excellent news. My lack of Japanese would be of little hindrance.

On our return from the north of the country, I called the hospital, and was answered by a polite stream of unintelligible Japanese.

“Eigo o hanasemasuka?” I chanted. Do you speak English? Unfortunately this prompted another stream of unintelligible Japanese. Fortunately I didn’t hang up, because after about five seconds a man came on the line, saying, “Good morning and thank you for calling. This is the translation service. How can I help you?”

Bloody hell, the relief.

I managed to book an appointment for only two days later. Two days. Read it and weep*.

Jeez, the Japanese are heavy on the punctuality

So, two days later, husband, children and I arrived at the clinic in central Tokyo; the reception could have been that of a five-star hotel.

“Eigo o…” I began. “Yes, do you have an ID number?” interrupted the receptionist. I didn’t, I explained, I was a first-time guest… I mean patient. I was given four forms to fill out. I urged husband to take children off somewhere to entertain them. After ten minutes the receptionist came over and, handing me an ID card, asked if I had finished filling in the forms. “Your appointment is at 11.15,” she said, looking worried. I had five minutes to go. “Nearly finished,” I smiled at her. Jeez, the Japanese are heavy on the punctuality.

Soon after, I was ushered through to a changing room to don a fetching kimono gown and slippers. The whole experience was one of a valued customer, someone who should be pampered and looked after. I could have been popping in for a massage. I felt out of my depth, and not because I was in a foreign country.

As it is, the mammogram I endured was no less uncomfortable than the one I had had a few years ago in the UK. The practitioner pawed, pulled and pushed my breasts between the glass plates, uttering “sumimasen” and “may I?” as she did so. “Does it hurt?” she asked. “Is it painful?”

“No,” I laughed, jauntily. I’ve given birth, this is nothing mate. I was bruised for a week afterwards.

After a wait of 15 minutes in a room desensitised by piped classical music, I was taken through for the ultrasound scan. This went on for an interminable age. I lay staring at the ceiling, no conversation between myself and the practitioner. She ran the probe over and over my right breast, clicking with her other hand at her computer keys, zooming in on and highlighting certain images, clicking again. And I knew.

When will they tell you what you now suspect?

Twenty minutes later, the practitioner stood, nodded at me and indicated I should stay where I was. She left the room, and me, for 10 minutes. What do you think about in those circumstances? You are sequestered in a darkened room, in a hospital, in a strange city. You are a slab of meat. You have your own suspicions but the practitioners who have been inspecting your body, poking, prodding, and pressing, know more. They know more about you than you do. When will they tell you what you now suspect? How will they tell you?

The practitioner returned and took me out to the waiting room. “Dr Kajiura will come and speak to you,” she said. And she left me.

After another 15-minute wait, Dr Kajiura beckoned me into her room. Her English was broken but clear enough to be understood.

“See your mammogram here? And your ultrasound here?” she pointed to images on the computer screen. “There is a shadow in your right breast. It is breast cancer.” Well, I knew this. “There is shadows in your left breast but that is nothing,” she shrugged.

I nodded, staring wide-eyed at her. Yes, yes, I thought. What next?

“I will refer you to main hospital,” she said, and I realised that as she worked her way through her sentences she frequently shut tight her eyes. Was this a tic she always had? Or just one she exhibited when struggling to find the right words in English? Or when she was having to impart this sort of verdict?

“You will have… ahhh… biopsy?” she said. I nodded, helpfully. “Yes, a needle biopsy, and we will know more. Take your information to the reception desk and they will…” she waved her hand – they will deal with it.

I liked Dr Kajiura. She was warm. She had to tell a foreign woman something she might not want to know, in a language she (the doctor) was uncertain of.

I went out to reception. A bill was printed off and presented to me. I handed over my credit card and paid. “Umm,” I said. “Will you make the appointment at the hospital or will I?”

The receptionist said, “You call this number and tell them Dr Kajiura refers you. Tell them your ID number. They will do it.”

I dressed and left.

I was asked for a referral letter I did not have

When I called the main hospital to make the biopsy appointment, I had found husband and children (after a comical journey through the train system) and made the call from a stairwell in a department store. “Eigo o hanasemasuka?” I asked the receptionist who answered. “Yes, of course,” she said. “Do you have an ID number?”

“Why, yes. Yes, I do.” The appointment for the biopsy was made for the next week. The next week. Sigh.

When I arrived at the hospital to check in, I was asked for a referral letter I did not have. I stammered, assuming that my ID card would provide all the requisite information. I rifled through all the paperwork I did have, with confirmation of the initial appointment, bill receipts from the mammogram, etc. These were returned to me, politely but with a silent implication that they were irrelevant. “Dr Kajiura referred me from the clinic,” I proffered. “I have no letter. She just told me to call.”

“Ahhh, Kajiura Sensei,” was the reply. And there were no further questions asked. I was ushered upstairs to the “breast cancer” department (which is a bit of a slap in the face when you see that printed so boldly on the signs).

The mistake I made before this biopsy appointment was not eating enough food. I had had breakfast, but you’d be amazed how much energy is expended travelling by train across the city. When we got to the hospital I bought a donut, which I then couldn’t eat because I was starting to feel nervous. I never used to have a problem with needles – during blood tests and when donating blood I always watched the needle being inserted into my arm. I was utterly without squeam. Squeamless.

However, an unfortunate incident some years ago involving a lack of food, a blood donation, a swift walk to work, a fainting in reception and a trip to hospital to recover have left me a bit… well… delicate around needles.

The NHS waiting list reputation precedes it

A practitioner with excellent English took me into a small room to go over my forms and ask me some questions. “I see your mum had breast cancer, and your aunt, and your grandmother died of it at… 38? I think this might be genetic.” She looked at me with a twinkle in her eyes, and I said drily, “Yes, I think you might be right.” “Perhaps this is something you should talk about with your doctors in the UK,” she said. (For the record, they know. For the record, there was an excellent research programme looking into genetic cancer, of which I was a part. For the record, its funding was cut and it was halted.)

Dr Fukatsu, who carried out the needle biopsy, was a young, gorgeously giggly woman who was breathlessly apologetic about her terrible English. Her “terrible” English that was the only way we could communicate because I know no Japanese. She asked me to fill out my address and admired the katakana I carefully drew. “I don’t know the romaji translation of this,” I said apologetically.

“You have written it well,” she said admiringly. “I can read it. It says Belle Seasons.” Who knew? Apparently the apartment block we were staying in was called Belle Seasons. “When can you come in for appointment for results?”

I consulted my travel itinerary. Well, I explained, we’re going to Hong Kong, and Taiwan, and then we’ll be back for a couple of days, then we’re going to South Korea… “Ahhh,” she nodded with excitement. “Lovely! But what are you doing this last month?” Nothing, I said. Staying in Tokyo. “You could have your treatment here!” she said, and I swear she looked excited at the prospect. I smiled and shook my head. “We can pay for these tests but the treatment is too expensive,” I said. “I’ll have to go home.”

“Here, we can treat you quickly, after results of tests,” she said. “In Britain, I think… is slower?” Wow. The NHS waiting list reputation precedes it. I felt a swell of loyalty.

“Actually, for breast cancer the treatment can be organised very quickly,” I reassured her, trying not to sound offended. She nodded, then held out a form that explained the biopsy procedure, along with any complications that might occur. It was entirely in Japanese.

“Umm,” she said, looking over it and deciding which part she should translate for me. “Umm, one percent chance of infection but that is very low so…” she shrugged. “Umm…” She scanned the form in front of us then shrugged again and put it aside. Obviously nothing worth worrying about there…

“Results will be ready in one week to 10 days,” she said.

“Will you post them to me as well?” I asked.

“No,” she said, gravely. “For these results we need to talk to you.”

“If I come to collect the results from you, could I take them back to the UK for my doctors there?”

“Yes,” she said. “I will write them out in English and have them in PDF so you can email them. And when are you away? I will make appointment for when you can come here.” Make an appointment for when I can come here? Blimey. Sure enough, after another consultation with my diary, we arranged a date convenient to me for my return to the hospital to pick up the biopsy results.

There will be some pain from anaesthetic in 3, 2, 1…

Lying on the bed behind the curtain, my fear rose as another nurse was brought through. Dr Fukatsu introduced her and the nurse nodded at me, murmuring a soothing litany of polite Japanese. Well, it might have been soothing if I wasn’t already starting to sweat with anxiety.

I clenched my teeth as they prepared the local anaesthetic needle. “Okay, so there will be some pain with anaesthetic in three, two, one…”

Is that it? I thought, laughing silently to myself at the memory this remark gave me of my first sexual encounter. I’ll just wait for some more, deeper pain.

Nope. That was, indeed, it. But I was very, very careful not to look down. After the preliminary anaesthetic needle, apparently three biopsy needles went in. I didn’t watch, or try to catch sight of a single one, because as time went on, with each needle’s careful insertion and somewhat shocking extraction (since, inexplicably, a spring was being used – “May be some sound of the pain,” said Dr Fukatsu, “in three, two…” Wait, I thought, of the pain? And sure enough, there came the doing of a spring and a slight whiplash from it; “Oh, sound of the spring!” I said), I became slightly more nauseous, slightly more hazy, slightly more hot…

I’m going to faint, I thought, and I’m lying down. I repeatedly clenched and unclenched my fist, in an attempt to keep myself conscious and the blood flowing.

Finally it was over. The needles were removed and the nurse placed a pad on my breast, then leaned hard on it for five minutes. Precisely five minutes. When she stepped back, Dr Fukatsu put on steristrips and a pad plastered over the top. She explained again that when the results were ready, I could come to talk about them, and would be given the paperwork for my GP in the UK. “You will need treatment soon,” she said.

“Do you already know?” I asked. “Just from the mammogram and ultrasound, without the results of the biopsy, that it is definitely cancer?” She nodded apologetically, then left, returning with the English-speaking nurse.

“I’m just here to make sure you understand everything, to ask if you have any questions,” she said.

“Oh!” I said. I thought it had all been pretty clear. “I just wondered if she could be sure, even before the results, that it is cancer?” A rapid, murmured conversation commenced between the two doctors. “We cannot claim to be 100% sure,” said the translator, “but it is almost certainly cancer.”

I looked at the young doctor and said, “Your English is perfect.” She giggled like a schoolgirl.

“She wasn’t feeling confident,” said the translator.

“You tell me that now!” I laughed.

I sat with the doctor while she wrote her notes and gathered the various forms I would need. I felt myself getting hotter and hotter, and fainter and fainter, and knew that both my blood sugar level and blood pressure were markedly low. I started fidgeting, and called husband’s mobile. His failure to answer made me fidget even more. This instance of anxiety and heightened adrenalin was much worse than the cancer diagnosis. I felt vulnerable, embarrassed, uncomfortable. “I’m going to faint,” I mumbled, and stuck my head between my knees. The doctor said gently, “You are tired. You need support.” I am still, to this day, so grateful for her utter calm, her quiet patience, in the face of my panic.

“Have you eaten lunch?” she asked.

“I’ve had a banana and half a donut.” She humphed, which said everything. When I took a deep breath and sat up, signalling my willingness to leave, she walked me out to reception and said, “I will see you again soon.”

It was something of a blessing to then have such a hectic travel itinerary in the week-and-a-half after this experience. Better to be distracted by trips to Hong Kong, Taiwan and the blissfully tropical island of Okinawa; by flights from airports that buzzed with poorly suppressed excitement; by engagements with rude people, kind people, loud people, different people… Better to be fully immersed in lands, cultures and scenery that were so all-encompassing, so rich and fulfilling that my unwelcome diagnosis became more abstract, less potent.

Like people chatting about the weather at a tea party

Dr Fukatsu was accompanied by a different translator when I returned for the biopsy results. Yes, they said, the results confirmed that I have breast cancer. Did I have any questions. Well, ummm…

What do you ask, in this situation? As it turned out, in the half hour I was with them, a half hour during which they were entirely gentle and attentive, some questions did arise. The results were printed out – could they be scanned as an email for me to send to my UK doctor? Yes. Did the results show this as a primary cancer or a secondary one; was there any chance I might have cancer elsewhere in my body? The results show it is a primary cancer, but to confirm if it has metastasised anywhere else I would need further tests. Were my lymph glands affected? The scan had shown inflammation of the lymph glands; these should be tested and checked by my UK doctor before further treatment was organised. How big was the lump? It was 2.25cm.

If all this sounds dry, I have to say it was all carried out in the tone of people chatting about the weather at a tea party. Very polite and agreeable. “Two point two five centimetres,” I exclaimed about the size of the lump. “That’s as big as my boob!” I have very small boobs.

The subject of the genetic predisposition was brought up again. Dr Fukatsu explained via the translator that if I were to continue having treatment in Japan, they would carry out tests for the BRCA gene, and its mutation or otherwise would have a very big influence on how I was treated. “We hope you don’t mind our being delicate,” said the translator, “but if you have the mutated BRCA gene, it might be worth having a full mastectomy, rather than simply a lumpectomy.” Perhaps it would be a good idea for my Scottish doctors to look into this?

After half an hour, I left the tiny consultation room with a wad of notes, a CD of images from my mammogram and ultrasound scan, and a sense that I was now in possession of all the facts I would need to mount a fully armed defence against this unwelcome invader.

So. I am now, this minute, returning with my family to the UK. Of all the times this genetic, inherited cancer could have struck, it’s in the middle of the most incredibly rewarding, enriching trip to parts of Asia I never expected to see, interrupting a comprehensive waltz round palaces and parks, shrines and temples, towns and villages. Of all the tourist attractions, the country’s medical system was not the one I expected to experience the most. (As it turns out, it’s been almost pleasant. I can recommend it.)

Cancer, you suck. But Japan – I promise we’ll be back to continue our Nihongo adventure. See you in the next blog 😉

* I’m going to make it very clear here that I have no criticism of the NHS – none. I could write a dissertation on how it is being failed and by whom, but nowhere in that dissertation would it cite the doctors or nurses.

With grateful thanks to Drs Biggart and Doldon, and Eileen Martin at North Berwick Health Centre; Kiei Kim at Run For The Cure; and Drs Kajiura and Fukatsu at St Luke’s International Hospital, Tokyo

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9 Comments

  1. insocrates says:

    I’m so sorry Isla, sending you so much love and massive hugs. Hopefully see you soon – I am largely free, and nearby, so let me know if you fancy meeting – whenever, wherever. Love you xxx

    Liked by 1 person

  2. Rosie Savin Angel says:

    You are brave, courageous and amazing. Sending all the love in the world xxx

    Liked by 1 person

  3. Susan Moffat says:

    You have put so much thought into describing what has happened to you. Hoping that all will be well.

    Liked by 1 person

  4. Kim says:

    Isla I am so sorry to hear this, cancer doesn’t stand a chance, you will beat this! Safe travels and see you when your back home. Love to you and the family. Xxxk

    Liked by 1 person

  5. Olivia says:

    Oh Isla, I came to your blog with such relish knowing what pleasure has come from reading your wonderful accounts of your adventures and to discover this. I am so terribly sorry. How amazing you are to be able to write about it with such beauty and humour and candour. Cancer hasn’t a hope against such a spirit. Sending you every good wish xxx

    Liked by 1 person

  6. Michelle Ellel says:

    really sorry to hear of this shitty end to your wonderful time in Japan. I really hope that this can be sorted out quickly but that of course does not negate all that must be going on in your mind. So glad you have a wonderful family to support you.

    Liked by 1 person

  7. Another one who has had a good cry reading this. Thinking of you all, and hoping you are back to finish your trip in no time at all. X

    Liked by 1 person

  8. Leisha Wemyss says:

    Oh Isla. I’ve needed to hide in the toilet to cry while writing this. I am so, so sorry. Fucked off and sorry. Please get home soon and get this thing kicked into touch. Much, much love to you all. Xxx

    Liked by 1 person

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