JUST over a year ago, we received probably the worst news parents could ever hear. “Go home and spend your last night together as a family. You have a long road ahead of you,” said the doctor, after telling us that our five-year-old, Nicholas, almost certainly had an inoperable tumour and wasn’t expected to have much more time on this earth.
My husband and I held each other tightly, in a state of shock and disbelief at the prospect our beautiful child wouldn’t get to live his full life. We struggled to steel our emotions, to hide our unbearable sadness as we returned to Nicholas’s hospital bed where he was cuddling his little brother.
How would three-year-old Timothy cope, I pondered, as he lost his brother and closest friend? I could only imagine him growing up, at best, deeply scarred from experiencing the premature death of his much-loved sibling.
I wasn’t brave enough to stop tears slipping from my eyes as we packed up Nicholas’s things to go home. I wondered how we would explain the dreadful news to him.
Nicholas had told me in the hospital, during his sickest moments as his fever hovered in the early 40s, that he was scared of dying – and I had reassured him, as mothers do, that everything would be alright. He would be fine. He would soon get better and be out of the hospital, I said to him, over and over.
My little boy had trusted me, taken me at my word, and now he was going to see that my word was worth nothing. He would be vulnerable and alone as we all are at the end, and we would be watching him terrified, lonely, confused at the ways of the universe and most probably in pain. Mothers aren’t supposed to see their children die. Usually it’s the other way around.
The drive home along the steep incline of Lion’s Head mountain in Cape Town’s city centre was bitter-sweet. I’m not sure I’ve seen a more beautiful sunset than I did that evening. I was acutely aware this was quite possibly the last sunset we would share with Nicholas; in the morning he would be admitted to the oncology ward of Africa’s top children’s hospital, in Cape Town.
I tried to memorise every minute of that journey; I didn’t want even the smallest details about Nicholas to fade with the passage of time, as they tend to with people who have passed on. In my mind, I can still see the orange-pink ball going down over a shimmering, blue-silver Atlantic ocean.
The next day, after more tests and examinations, a professor of paediatric oncology sat us down to tell us he was sending Nicholas home. What had looked like cancer to a team of top-notch South African medical specialists who had studied and worked in Europe, Africa and elsewhere was in fact not cancer.
It could be something else nasty, but it was not cancer, said the oncology professor. “Today is your lucky day. I have only ever sent two children home because they don’t have cancer and Nicholas is one of them,” he said.
Mystery illness returns
After moving from South Africa to Ningbo, China the mystery illness struck again. Memories of the 24 hours between Nicholas’s cancer misdiagnosis and his discharge from an oncology ward filled with bald children accompanied by their heavy-hearted parents came flooding back. There was, of course, the nagging unanswered question about what had caused the illness that had kept my son in hospital for a month, and requiring heavy-duty intensive care drugs, last year.
Here we were again: facing the same health problem, only this time in an unfamiliar environment. We were far from friends and family and relying on medical professionals in a system that was, to us, very strange.
A Chinese hospital can be a scary place for a foreigner, not least of all because of difficulties in discussing vital medical details when you don’t understand what doctors are saying and they don’t understand you. Poor communication is one thing when ordering food or asking for directions; it’s another when it comes to your child’s wellbeing and you’d like precise information.
There are other reasons Chinese hospitals can be daunting for foreigners. These include that some things are done very differently from back home, starting with the cosmetic details, and including aspects of the way medicine is administered.
In South Africa, for example, a private hospital looks more like a five-star hotel. There’s lots of attention given to the decor and restaurant-style meals are delivered three times a day. If parents don’t get a fluffy towel and extra bedding to make sleeping on a hospital armchair more comfortable, it’s grounds for complaint about the children’s ward.
In Ningbo, on the other hand, it took us a while to understand it is normal, and expected, that you bring your own toilet paper, soap, hand steriliser and flannels and even buy a bed pan from the ground-floor shop when you are in hospital. The bench next to the bed is flat and hard and there’s no extra linen supplied if you’re spending the night with your child. Some people smoke in the hospital, and flick their ash around the place; others allow their children to urinate in baskets that, in South Africa, would be used for waste-paper.
Moving on to the medical details: intravenous antibiotics seem more common than oral alternatives. Injections are daunting for people who aren’t used to them. Also uncomfortable for a foreigner is that other patients and visitors gather around to listen to what the doctor has to say, or watch what the nurse is doing. In South Africa medical examinations, discussions and tests tend to be very private affairs.
I realised I would have to trust that we were in safe hands. I told myself that, although things may be very different from what we were used to, the Chinese were known for their traditional medicine and had been ahead of the pack for centuries when it came to various remedies. And, it crossed my mind, that Chinese doctors may have different information and perhaps a better idea about what was wrong with Nicholas.
My gut instinct to trust these doctors and nurses proved to be right. The surgical team left nothing to chance. They conducted many tests before deciding against an operation. At least nine doctors visited Nicholas regularly, with the head of the surgical team paying special attention to him and even accompanying him to a scan.
Within a week, Nicholas was on the road to recovery. “Would you like the name of your son’s disease? Please search for these words on the internet,” said one doctor, after translating the name from Chinese using his phone dictionary. Later I did look it up: the diagnosis made sense – and read with all the other tests also explained last year’s problem.
These medical professionals were also compassionate. As Nicholas was being wheeled from one ward to another, he had again told me he was very scared. “I don’t want to die, Mom,” he said, through his own tears and a raging temperature. He was hooked up to a drip and machine and was clearly in physical distress. He had a searing headache and looked like he was battling to stay conscious.
This time, however, I wasn’t the one offering the words of reassurance. An off-duty nurse who could speak some English and had insisted on staying to help us communicate was emphatic to him that he would be OK.
“Don’t worry. He will be fine,” she said to me too, her empathy and repeated thoughtful acts later confirming that nursing, for her, was more than just a job. Even when she was at home, this junior nurse called periodically to find out whether she could assist with any information across the language barrier or help in any way. She also punched in the telephone number of a nearby fast food outlet and helped us order meals for delivery to the ward, as food is generally not supplied in a Chinese hospital.
We felt like the doctors really cared. Genuine concern showed on their faces whenever they visited Nicholas, and when he was discharged one of the doctors asked if he could be a friend.
How do you express gratitude to Zhejiang people for nursing your very sick child back to health relatively quickly and solving an important medical mystery? Our general practitioner suggested, and then kindly organised on our behalf, a 2m-long red personalised banner, saying “thank you” from us in Chinese. We presented it at the hospital.
Six months into our residency China may still feel like a foreign place to us, but when it comes to the medical facilities we are confident we are in safe hands.
- This article is an edited version of a piece published by China’s Zhejiang Newspaper Group. It was awarded a Certificate of Honour and included in a bilingual book of essays on how foreigners experience China, ‘Eyes on Zhejiang’, in 2011.
The writer, Jackie Cameron, is a journalist who now lives in Scotland. Contact her at email@example.com. You can read more of Jackie Cameron’s previously published work here or follow her on twitter: @JackieCameronUK.
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