An Expat’s Battle With Thyroid Cancer – Part 3 Attempting to get radiotherapy in China

March 3, 2017February 19, 2019 Ola JagielskaLiving Abroad, Asia, Travel Stories

For the past two weeks, I’ve blogged about my story about thyroid cancer. I found out about it in China and I considered having removed there, but eventually decided to return to Poland for the operation. In this final post in the series, I discuss why I decided not to have the radiotherapy in China and where I finally had it.

Read on to discover more…

Decisions, decisions

I had my thyroid removed in early January 2016. My biopsy a few months earlier indicated possible thyroid cancer. We took 6 weeks off and went to Poland for the operation. After the operation, the surgeon sent my thyroid for histopathology to test if it was in fact cancer.

Of course, I hoped it wasn’t. Otherwise I‘d need radiotherapy. This could force us to stay in Poland longer than expected, which would probably mean losing our jobs in China. We wouldn’t have a clue what to do next.

Alternatively, we could try to do radiotherapy in China.

Neither of these options was very appealing.

The results

I remember when I got the phone call from the surgeon. It was late morning.I was sitting in an armchair in my mum’s living room.

I had my Chinese textbook and notebook on a coffee table, which I was studying from. It was the first day of my first Add1Challenge (which challenges language learners to produce a 15-minute video with a native-speaker in just 90 days).

My phone rung. Unknown caller. It could have been anyone, but I’d been waiting for this call. I picked up the phone to the surgeon on the other end.

They’d detected cancer. Even though they’d removed the cancer from my body, I needed radiotherapy to prevent a relapse.

It’s common after removing a thyroid to use radioactive iodine to kill all remaining cancer cells. It’s not as invasive as other forms of radiotherapy and chemotherapy. The thyroid is the only organ in human body that can absorb iodine.

The patients swallow radioactive iodine, which is then absorbed by the remaining thyroid cells, destroying them. After that, patients must enter strict isolation for two days and stay away from other people for a week or two. This is because the patient is radioactive for some time, which can damage other peoples’ thyroids. It’s especially dangerous for children.

We had to think about our options. The surgeon put me in touch with an oncologist (cancer doctor), who advised me to wait at least two months before undertaking radiotherapy. This would ensure everything inside had healed.

It seemed best to go back to China and try to sort out radiotherapy there. Of course, everybody in the family started doing a lot of research. My sister even put me in touch with her friend who’d had radiotherapy before. This helped give me a little more clarity.

Returning to China

We booked the tickets to China. We spent a few days in Shanghai mid-February before getting the train to Putian where we were living at that time.

I asked my friend Sam to call the hospital and try to find out how much radiotherapy cost. But they wouldn’t give him information until they saw me first.

When we arrived in Putian, our Foreign Administrative Officer booked me an appointment with a hospital doctor in Fuzhou. A friend of a friend agreed to come with my husband and I to translate.

The visit was a complete waste of time.

The doctor told me that I’d need to take thyroid hormones for life (which my surgeon had already explained). He also explained how I would need to adjust the hormone levels over time (again nothing new to me). As our interpreter had to translate everything this took quite a bit of time.

Eventually, I cut him short and asked about radiotherapy in China. That was finally enough to get him to explain that their hospital doesn’t have an isolation unit. I would need to go to another hospital. For that, the waiting list was for six months.

He wanted me to do some blood tests at the hospital that day. But I was already pretty frustrated and I decided that I’d rather do them in Putian.

Six months! That would take me to August. The oncologist had said two months, not six. We planned to spend our summer holidays in Europe, so we definitely didn’t want to wait that long. I needed another option.

Yet another hospital

I managed to find an international hospital in Guangzhou (formerly Canton, the capital of Guangdong), 5 hours away from us by train. So, I emailed to book an appointment, and they replied that they’d provide an interpreter. I scheduled it for Saturday, so I didn’t have to take any holidays.

The email stated discovered over the phone that the radiotherapy would cost 30,000 to 40,000 RMB (4,350 to 5,800 USD). This was a lot, but I had work insurance that could possibly cover it.

We went to Guangzhou by train and stayed the night at a hotel. The next day we went to the hospital.

I brought all my results (both in Polish and Chinese) to the appointment. After browsing through them, the doctor decided that I need a CT scan before he could make any decisions. I wanted to find a solution as soon as possible, so I agreed. Even if it did cost 4,000 RMB (580 USD).

After a couple of hours, the doctor handed me a poster-size cardboard envelope with massive transparencies of my results inside. He said that everything was healing as expected and recommended me for radiotherapy and two weeks of isolation.

For some reason, he wanted me to go to yet another hospital saying that all the staff there speak English. But I was happy enough with this one. Finally, he I got him to agree, but he said he needed to contact one more doctor for a consultation. They’d send me an email.

Considering immunotherapy

A couple of days later, I received that email. The hospital suggested I undertook immunotherapy instead of radiotherapy in China.

Immunotherapy seemed great in some ways. They take a blood sample from a patient and infuse it with sample special cells, called Natural Killers cells. Their mission is to seek and destroy all remaining cancer cells.

But the treatment is so new, there aren’t really enough statistics to confirm its effectiveness. Also, the hospital wasn’t able to provide me with adequate convincing information about the procedure. We tried to do some research ourselves, as did many of my friends and family members. But there’s still so little available about this subject.

Fortunately, my mum managed to find a way to get me a paid treatment in a public hospital in Poland. We decided to do it during the summer. After some time spent arranging everything, I got a date for the radiotherapy: 2^nd August.

I’d accepted at that point that to do radiotherapy after two months was virtually impossible.

Approaching radiotherapy

In the meantime, we continued to work in our teaching jobs in Putian. In May, we decided that we wanted to take a job in Xiamen starting September. Xiamen is much more international city, and the job was at a university: a step up for us.

We left China for Poland at the end of June. After a few days at my mum’s, I had to stop taking thyroid hormones, under doctor’s orders. This was one month before my radiotherapy.

The lack of these hormones left me feeling tired, and caused me to feel kind of swollen due to excessive water retention.

We flew to England for a few weeks to visit Chris’s family. Time passed and then we returned to Poland for radiotherapy.

We rented a one-bedroom apartment in Poznan for a few days. The day before they admitted me into the hospital, we had a chance to ask a few questions, mostly about what I could take with me into the isolation unit.

We’d read online that anything I go in with needs to be thrown away before leaving, including all clothes and books. Phones and iPads should be used only in a transparent bag. But as with many things you read online, this turned out to be false. The doctor there did advise us to wash any clothes and then leave them somewhere for a couple of months.

Radiotherapy

So early in the morning of 2^nd August we went to the hospital. They admitted me pretty quickly and started doing all the tests. The results were good giving me the all clear for radiotherapy.

In the morning, they took me and two elderly ladies (both over 70) through two consecutive doors to our room. I had to change into my pyjamas.

A few hours later we were all given two capsules each. The doctors instructed us to drink a lot of water. Later, they also gave us a laxative to purge most of the radioactive iodine that the remnants of the thyroid hadn’t absorbed.

Someone deposited food and medicine for us in the corridor outside the room for us to collect. Doctors in special aprons came to check us every few hours. We had a phone in the room, just in case. The two ladies in the room with me were really nice and they had interesting stories from the Second World War.

I also did some reading, but I didn’t feel up to studying any Chinese.

Two days after the radiotherapy we were told to have a shower and change into normal clothes. After that the doctor came and measured how much we all radiated with what I presumed to be a Geiger counter. He told me that my readings were okay.

After that my doctor gave me the lowdown on how long I needed to stay away from people.

Isolation

Basically, I had to keep more than one metre away from most people for the first five days and two for the next seven. But I couldn’t sleep in the same room as anyone for twenty days.

And I couldn’t go anywhere near children for twenty-four days. Which meant I couldn’t see my new-born niece for most of the summer. Train travel also concerned me.

I had to go to my hometown, Szczecinek, by train. But the doctor told me that the danger to other people is only really if I’m close to somebody for many hours. Still, during the train journey home, I changed my seat a few times so not to endanger anybody.

My mum lives in a big house, so it wasn’t a problem for me to have a separate room. Also, the living room is spacious, that I just moved my armchair away from the coffee table.

For the first week, I barely left home. I couldn’t climb one flight of stairs without running out of breath, which worried me. A couple of months ago I’d been on a health kick and so in better form than ever.

The week after radiotherapy I had to go back to the hospital for scintigraphy (checking how much I still radiate). I lied down on a bed which started moving as it passed under a rectangular scanner unit. I had the results after 5 minutes and I went to see a doctor.

Everything was fine and the doctors reassured me my weakness was normal. It could take around two months before I got back into shape.

Once more in China

We arrived in Xiamen to start our new lives here at the beginning of September. I was still weak, but getting better. By October, I could walk up the stairs without much problem.

Now, I’m still adjusting my thyroid hormone levels. I keep having to raise them, but my results are still not as they should be. My next check is in two months.

The problem is that the thyroid can actually grow back. And it’s likely to grow back with cancer. So I take more hormones to stop this happening. Every six months I also go in for an ultrasound of the neck. Not too large a price to pay for being alive…

Final Thoughts

I still can’t believe how lucky I was. My cancer was discovered due to a coincidence, although my doctor’s expertise had a lot to do with it as well. But I wouldn’t have gone to see her if it wasn’t for my high blood pressure.

I’m the type of person, who doesn’t go to the doctor unless I’m really ill. If I hadn’t been forced to go in, I might have not have noticed the symptoms until it was too late. Or if the cancer had already moved to the lymph nodes, or even the lungs, things would have been a lot worse…

My experience with cancer taught me a lot. It really made me appreciate my life more. As I mentioned in the previous post I started my Add1Challenge shortly after my operation. Three months later I published online my first 15-minute video conversation with a native-speaker.

Last month I took the HSK 3 exam (a Chinese proficiency exam) and I’m planning to take HSK 4 in July. I also completed an Add1Challenge for Korean and I finally started speaking in this wonderful language. I don’t think I would have done all this if it wasn’t for cancer.

Now, we’ve started this blog. It’s also new, and we’re both really enjoying it.

Thank you for reading my story at Being a Nomad. I enjoyed writing it, although none of this was enjoyable when it was happening. If I can help anyone with any advice, feel free to leave a comment. I’d be happy to offer advice or lend an ear where needed.

Thank you also for all your comments and kind words. It meant a lot to me. If you have any more questions, feel free to ask.

Part 1 | Part 2 | Part 3

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