Into every foreign adventure a little rain must fall… and this summer I have had quite a tsunami!!
One of the benefits of working in international schools is the health insurance package and the deal that we get with Concordia is excellent. It is so much better than the one I had at Shrewsbury which seriously was the most basic of basics. Here at Concordia, we are encouraged to have an annual wellness check up in the summer. We didn’t do one last year as everything was a bit topsy turvy with covid etc. This year, however I saw other people going for theirs so I thought , why not. The insurance company allow us 3000 RMB each for our wellness checks and surprise, surprise that is what they cost at the clinic. We thought it would be nice and satisfying to see exactly how fit we are!!! Especially as I was feeling so good after a year of learning Taiji. Little did I know.
Because we were not traveling as much in the vacation as we normally would, we had plenty of time so Kevin booked us both an appointment at the WorldPath clinic. We didn’t really know what to expect as being British, we’d never had one before. Unlike other countries we just don’t have a culture of annual health checks. I have had to explain to many people here that the NHS is so stretched with reacting that it doesn’t have the capacity to be proactive and do annual screening for the whole population. In China, they take the approach that by screening everyone, problems can be nipped in the bud which then takes the pressure off other services. It’s actually very sensible.
Anyway, at Worldpath the tests were multiple and thorough. I was told that my bone density is low (which explains the stress fracture in my foot from earlier in the year). I then had an ECG, ENT, vision tests, bloods taken, gynecology exam and ultrasounds on breast and abdomen. It was during this last one that the technician asked if I knew that I had a cyst. I told her that I didn’t. I wasn’t worried. Cysts are common and usually small and usually no problem.
The doctor then called me in and said that I had an extremely large cyst on my left kidney and I needed to see a urologist immediately. He used the word ‘huge’ several times which didn’t sound so good. We were back the next day to hear that at 17cm the cyst was bigger than my liver!!! I was dispatched to have a CT scan two days later. Being private, through the school insurance, we could get this booked in extremely quickly.
I know that doctors have to tell you the risks, but this Dr scared me somewhat by saying that there was a 1 in 100,000 chance of death from the scan. Apparently some people are allergic to whatever they inject in you to make the image contrast. However, he said he had been sending people for 20 years and everyone had been ok. The mathematician in me started calculating the statistical likelihood of it happening now! The scan was a little scary but I didn’t die. I was ok. Phew!
The scan was at a Universal Medical Imaging facility and being a foreigner I was accompanied round by a translator. It was packed there with locals having chest X-rays as part of their annual screenings. There was no space for me to sit down while waiting. I needed a cannula to administer the iodine and this was inserted at the admin desk by moving aside about 50 clipboards with other people’s info on. It was all a bit chaotic and surreal.
There was a week’s wait for the results but fortunately that was when we were away in the Henan Province with the Taiji crowd which was a great way to be distracted. I hardly thought about the cyst at all.
Interestingly though, there was a monk at the Shaolin Temple who was practicing Traditional Chinese Medicine (TCM). For approx £5 he could do a consultation. I was curious to see what he would say about me so I went along. The monk put 3 fingers on my right pulse and then on my left. He actually listens to the meridians rather than just the pulse as we understand it. Through an interpreter (because he spoke no English) he told me that my liver and kidney functions were low. Then he said that there was something growing in me and I should seek medical attention when I got home!! I was astonished that he could tell all that in just 2 minutes of putting his fingers on my wrists. My respect for TCM has gone up. Kudos!
On our return from Henan we met with the urologist to review the scan results. He said that I needed a ‘radical nephrectomy’ (left kidney removal) because the tumor was covering 90% of the kidney which effectively meant that there was nothing left to save. I was also informed that the tumor is most likely (85%) to be cancer but they couldn’t tell for sure until it is removed and tested. So began my intense engagement with Chinese medical services.
This was quite some news to take in, particularly as I had no signs or symptoms. I felt no pain whatsoever and if anything had been feeling generally better than I had done in a long time. You can imagine the shock. It took quite a while to process it all and for a long time it didn’t feel ‘real’
The purpose of this blog is not only to document for me what happened but also to highlight some of the cultural differences in the health services.
I was told that I needed to be admitted to a Chinese state hospital due to the complexity of the surgery. They had all the equipment and they had ICU recovery in case anything went wrong. Private international hospitals here are for smaller, more routine procedures. So, I had no choice but to accept. However, not everything was as I would expect it to be.
I should point out that in normal circumstances for an operation as major as this I would have been shipped off to one of the large, well equipped International hospitals in Thailand or Hong Kong but covid has prevented such travel. So, unlike most other teachers or ex-pats here I got to experience a ‘Chinese’ hospital.
My school HR were great, once I told them the news they swung into action and put me in touch with our health insurance broker, a guy called Owen who to my relief spoke English!!! It’s amazing how important something like that is when the chips are down.
The next big thing to happen was that the urologist at Worldpath had asked for a PET scan to see if the cancer had metastasized. BUT I got an email the next day saying that the insurance company had rejected the request. I went into a flat spin not knowing what that meant. In the UK if your doctor wants you to have a scan, you go and have one. You might have to wait for an appointment but you do get one. No third party turns around and says that you can’t have it!!! The whole medical insurance system was quite alien to me. Owen was fantastic and he sorted it all out. There had been a problem with the paperwork. I wouldn’t have known what to do myself.
After the PET scan I was presented with a large bag containing sheets with the scan images on, a CD of the images and a report in both Chinese and English. This is very different to the UK where such things are exchanged between the medical professionals only and you don’t have to schlep sheets of images around yourself.
It was quite a low point when reading the PET scan report as it began, ‘the patient has an unremarkable brain’. I was a bit disappointed to read that until I discovered from reading further that really they meant that there was nothing wrong (phew). Quite a lot of things (apart from the left kidney) were ‘unremarkable’ which was a good thing. They didn’t find any evidence of any cancer spread but the report confirmed that the tumor is ‘very likely’ to be cancer. Gulp.
It was at this point that things started to get very different from the dear old NHS. The insurance company asked me which hospital I wanted to go to for the operation. I was being asked to choose the best hospital for urology in a city where I didn’t even know what hospitals there were!!! I was sent the CVs of several surgeons which baffled me because I had no idea whether being on the editorial board of one journal was better than being on a committee for research etc etc It was all getting a bit much, particularly as I was still ‘in shock’ about the diagnosis. The urologist at Worldpath recommended The People’s 9th hospital because his mentor worked there but it turned out that my insurance company didn’t do direct billing with The People’s 9th. Also we weren’t sure if they had an International wing. This was important because I was going to need people who spoke good English. Or at least ‘some’ English.
I was in a bit of a quandary and didn’t know what to do, which hospital should I choose from a series of complete unknowns. The Americans do exercise more control over who they see but it’s so different in Britain. I am used to being sent to a hospital/surgeon and that is that!!! Too much choice is not necessarily a good thing. I rapidly became aware that some suggestions were nepotistic (money from Insurance was involved) and some suggestions from the insurance company might well have been about getting the cheapest deal rather than the best. It was very complicated and I wasn’t entirely sure who I could trust.
Then I went to church and in a swift answer to prayer I met Richard, the GP husband of one of our members. He doesn’t attend very often and in fact I hadn’t met him before that day, but over coffee I thought I would ask him which is the best hospital for kidney removal. Half an hour later I had an appointment in two days time at The people’s 1st Hospital with Dr Liu, the associate director of the Urology department. I couldn’t believe it. It is the biggest hospital in Shanghai but they do have an international centre AND my insurance do direct billing. Phew! I felt as though a weight had been lifted from my shoulders.
In the meantime the insurance company required a ‘second opinion’. Again this was not something that I am used to. I guess that when spending large sums of money they want to ensure that it is all being spent correctly and that they only pay for necessary work. The second opinion service is based in the US so a doctor phoned me for a consultation one evening. I was then asked to upload all the scan images that I had. As these had been given to me on a CD my next problem, was, who has anything that can read a CD these days!!!
Fortunately Concordia came to the rescue and the tech hub do have the requisite equipment. Nicco was brilliant and he did it all for me. The images were such a high resolution that it took well over an hour just to upload them to One Drive. I was then able to share a link to that file with the US doctor. It’s incredible when you think what technology can do these days.
The second opinion service took 7 working days to complete their report and they concurred with the local doctors that I needed a radical nephrectomy (kidney & tumor removal) and that in all likelihood the tumor is cancer.
This is major surgery but to be honest I was less worried about that than the fact that multiple people had warned me about Chinese hospitals and the fact that they are not big on post op pain relief!!! I heard stories such as c section patients being given only paracetamol!!! I was more anxious about this than anything else. I knew that back at home or in the private hospitals you can get western style morphine but the Chinese don’t like using it because they worry about people becoming addicted (which is ridiculous because you can’t even get a packet of paracetamol here without showing your passport!) how could I become addicted to something that I couldn’t acquire??? This more than anything else raised my anxiety levels.
The other cause for concern was that relatives are expected to do much of the in hospital nursing care. In Chinese hospitals there is usually a chair beside the bed which converts to a sleeping position for a relative. That person does all the personal hygiene care. They even have to go and get the various bits of equipment needed for procedures (& pay) before treatment!!! They are often in charge of feeding the patient too. For people who don’t have a relative to do this there are ladies who live in the hospital and you can pay them to do this care. I myself saw multiple old men being wheeled around the corridors of the hospital by their elderly wives.
Kevin accompanied me into hospital and whilst he is good at lots of things, nursing is not one of them!!! I was quite worried. He needed a crash course on how to give a bed bath!
Concordia were also helpful when the school nurse got involved and offered to talk directly to my medical team and act as a translation service if I needed it. This was useful because Nurse Jenny is familiar with medical terminology. The doctor had given me his WeChat contact details so that I could ask any questions but his English was a little limited. Either that or he just doesn’t talk much! In a foreign country people speaking broken English in shops or restaurants can be cute. You get the general meaning and gesticulation goes a long way. When it comes to medical information, however, it’s a whole different story and you want it as articulate and as accurate as possible. Having the school nurse on board was a reassurance.
Lots of people have been very supportive and helpful as I have navigated all this. But one day someone casually asked if I had sorted out blood in case of transfusion. What! WHAT!!! I have to do that!!! ME? Really?!?! Another case of me making assumptions about how hospitals work in a foreign country. I had assumed that like the UK national blood transfusion service, blood was supplied to hospitals. After some panicked investigation I discovered that in fact, they do. Phew! But then a chance conversation with my hairdresser two days before I was admitted explained everything.
The Chinese as a population do not have much rhesus negative blood. I am O neg which is one of those rare types which means I can only receive from other O neg donors; stocks of that particular blood type are extremely low here. Hence the problem. Emily put me in touch with a friend of hers who is connected with an organization called Bloodline. This is a group of volunteers with rhesus negative blood (largely ex pats I believe) and the day before my admittance they swung into action by creating a group of 7 people who were on standby to donate to me in the event of me needing a transfusion. I was so grateful and so touched. I honestly hoped that they wouldn’t need to but it was reassuring to know that they are there. I had heard stories about operations being delayed while blood supplies were found.
What this showed me is that I cannot make assumptions about how the health systems work here and I don’t know what else I don’t know…
Since booking my surgery there has been a bit of a spike in covid cases here in China. It’s not like the rest of the world as there were only 2 cases in Shanghai but the government reacts very stringently. As a consequence I cannot have any visitors and once he is in with me Kevin won’t be able to leave the hospital. This late news necessitated some last minute packing changes as we had been advised that I could be in for 7-10 days!!! We were also advised to pack a cool box with easy food such as cheese and biscuits, yoghurt and fruit in case I don’t like/ can’t eat the Chinese menu.
On Monday 9th August I duly arrived at the IMCC (International Medical Care Centre) of Shanghai General Hospital (People’s No.1) and was shown to my room.
Fortunately it is very nice, clean and quiet. I have actually been in worse hotel rooms but then again they don’t stick sharp things in you in hotels! There were 2 beds so Kevin didn’t have to sleep in a chair.
I was asked to change into the hospital pajamas which are NOT flattering. Every patient wears these all the time. I think that it is to help staff distinguish between who is a patient and who is a relative. Fortunately the covid spike has meant that there is only one relative per patient rather than whole families!
Then the process of sticking sharp things in me began in earnest. I was taken for another CT scan (where I was injected with more iodine), they took loads of blood! I had a heart, neck and legs ultrasound, an ECG and a lung capacity test. I have had ENT surgery in the UK but never been so thoroughly tested before an operation before.
The Number 1 People’s hospital is massive and the IMCC is in building 12. Most of these tests required me to go to other departments in the hospital. I got someone in an IMCC burgundy uniform to take me and brings me back. What is interesting is that once we arrived in each department I jumped the queue! I can only assume that this is a privilege of being private (I’ve never done it before).
On arrival at the ECG section I was manhandled to the front ahead of an elderly Chinese lady and her husband who were clearly not impressed by this queue jumping. And to be honest, being British I was a bit uncomfortable too. I was pushed forwards and motioned to lie on the bed. Clips were being attached to me including round my boobs when the couple came in and stood there watching and protesting loudly about being usurped!!! Patient privacy… what’s that!?! This is China. They did eventually go back behind the curtain (to my relief).
It’s now op day -1 and I had a long chat with members of the medical team & their translation app! I now know that they will definitely be removing my left kidney, left adrenal gland, some surrounding fatty tissue and the upper part of my ureter. Actually he said uterus and I believed him but subsequently learned he got the word wrong!!! Communication has been challenging to say the least. I suggested that they take out as much fatty tissue as they want from my stomach but that went down like a lead balloon.
Apparently they can’t tell exactly from the scans whether the tumor is sticking to other organs or if there is a gap. If there is a gap then removal will be more straightforwards. I am hoping for that.
Here is another example of communication difficulties. When asked what time the operation would be Dr #1 told me that it would be at 4 o’clock. I was disappointed to hear this as it would mean long fasting hours during the day. Then Dr #2 said the operation would be at 12 noon. Better news, I thought. Then they actually came for me at 10.30am!!! The surgery took 4 hours so maybe that’s where the details were ‘lost in translation’ It is only a small point but it does make you cast doubt over the validity of other bits of information. I quickly learned that Dr#2 had the better command of English and fortunately saw him most often.
I had really tried hard to be as calm as possible, taking the attitude of ‘what will be will be’ and ‘this is something that I just have to get through’ I felt encouraged and supported by a huge prayer community which was remarkably reassuring. But from the point that I climbed onto the trolley I began shaking uncontrollably. I had to leave my glasses and hearing aid behind so communication, which wasn’t great at the best of times became significantly worse.
I was wheeled into a large bright room and had a cannula put in. Whenever they wanted to ask me something they wrote it on a piece of paper. Then I was ‘parked’ up against a wall and I realized that I was in some sort of queue. I have no idea how long I was there but it felt like ages. Then I was taken to a side room and given a nerve block in the spine which they said would help with post op pain. It did, but not for very long.
Poor Kevin was getting worried by 3.30 back in the room and no one was able to tell him any news. It wasn’t until 6.22pm that I was brought back. In another departure from NHS practice he was asked to help lift me into bed. Normally we don’t ask the relatives to lift what is essentially a dead weight!!! What if he had hurt his back!!! What if he had dropped me!!!
What began then was two nights and two days of agony, nausea and no sleep for Kevin.
I was wired up to multiple gadgets and tubes. One was ‘patient controlled analgesic’ PCA which was suspended above me but out of my reach. Kevin could press the button and I remember asking repeatedly for the pain relief. He was instructed to only let me have some every 30 mins but he tells me that often I would ask after only 10 mins. My concerns about inadequate pain relief were being borne out.
You can see in the picture above that I had a blood pressure cuff on. I wore this for 36 hours and it inflated, waking me up, on the hour every hour!!!
I also had tubes inserted into my carotid artery and I pretty much permanently had something dripping into me, saline, protein, antibiotics… It was actually quite a convenient place for the nurses to get to and surprisingly it didn’t hurt. Although I’m glad that I wasn’t conscious when they put it in!!! I could smell and taste the medications though and I felt sick as a dog. The nausea they told me was a side effect of the anesthetic but what they meant was that it was a side effect of the PCA. By the middle of the second night I was in such pain and felt so sick that I wanted to die. I think I said as much at the time. It felt as though I had been kicked in the back by a horse and simultaneously whacked in the stomach by a wrecking ball. I felt feverish and was crying.
At this point the nurse took the PCA machine away. She came back with an anti sickness injection and things began to improve marginally.
In the morning the head honcho nurse appeared by my bed, followed by a coterie of very respectful young nurses. She told me that she had heard about my pain problems in the night and that they would tell the doctor. A new bag appeared above me, I don’t know what it was but it worked on the pain and didn’t make me sick.
At the same time that I was feeling sick I was also very very hot. I kept throwing off the bed clothes and asking if the air con was on. It was on so high that poor Kevin had to wrap himself in a blanket when he sat by my bed. Holding his hand was quite a relief as it was like a block of ice and helped cool me down (briefly). Then I would start shivering and want the blanket myself. The nurses told me that my temperature was too high and I was running a fever. Apparently this is quite common after major surgery but it made the whole experience harder to bear. Fortunately after several days and multiple bags of antibiotics intravenously I am feeling more human again.
From the time I came back to my room I was told nil by mouth. This was extremely frustrating as I wanted to drink water. Previous post ops had encouraged sipping water but here, in an agonizing form of water torture it wasn’t allowed. Because I was lying on my back my mouth would open when I dozed off and every time I woke it felt like the bottom of a bird cage. One of Kevin’s tasks was to dip a Q tip in water and let me rub my lips and gums. I don’t know how I would have managed if he hadn’t been there to do that. It was day 2 before I was permitted little sips of water.
Communication, which was always fairly challenging, got a whole lot worse for me in the post op days as I didn’t have my glasses on or hearing aids in. In any case the staff were all , without exception, always wearing masks which makes things harder for me at the best of times. The staff didn’t speak to me much, there was no chatty, ‘how are you doing, love?’ Or ‘how are you feeling ?’ but when they did give me an instruction I honestly had no clue what they were saying. Which meant that things were happening around me and to me but I didn’t have a know what was going on. It was quite an isolating experience.
On Day 3 I was allowed to eat soft food. Basically this meant congee which is a rice porridge that is bland in the extreme. Meals were quite interesting as I was allowed the western menu Pre op and had salami pizza, roast chicken and spaghetti carbonara. Very tasty thank you. Post op, I was told that I would have to have the Chinese menu as it was healthier ie low fat, low salt and low sugar.
Breakfast was always the same. I couldn’t eat all of this even Pre op.
Lunch and dinner were tray meals plus a clear soup. Those soups were all I could manage in the beginning. One day it was mushroom soup but boy did it look like 2 floating kidneys…
The tray meal almost always included prawns (which I don’t like) some bitter tasting green vegetable, plain dry rice and something ‘meat’. Sometimes I could face eating the meat but, not the rest.
I will never say anything derogatory about NHS food ever again.
Fortunately I had been advised to bring in a cool box of snacks. There is a fridge in the room so we were able to store yoghurts, pears, pringles, oatcakes, cheese and a little bit of chocolate. I knew that I was on the mend when I started to want some of that.
The medical team were pleased with how the operation went. The surgery was ‘robot assisted’ which meant that very precise work could be done.
Robots can also twist 360 degrees which the human hand cannot. It was very clever really because they inserted a plastic bag around the kidney and tumor which they vacuum shrunk to make it small enough to get out. Even so the incision in my stomach was 10cm long! I have to wait 7 working days for the biopsy results. The medical team shared a picture with me of what they removed. It’s gross and looks like a baby alien. Message me if you’d like to see it.
A week after surgery, once I had proved that I could stand the catheter came out and the next day they took out the tube in my neck and a big drainage tube from my stomach. That was quite a surreal moment too. Kevin missed it all as he was in the shower. The Junior Dr from the team had done the neck one and told me to press on the hole for 10 minutes. He opened up the Velcro belt exposing the stitched up wound (not very neatly stitched I might add) when in came the cleaning lady. Once a day she appears and mops the floor. Despite the fact that I was having a procedure she carried on sweeping!!! I’m pretty sure that wouldn’t happen back home. What if the stuff she was sweeping got into the wound? What if I’d had private bits out? I couldn’t cover anything up with my hand because I was stopping blood coming from my neck… she had a job to do and so she just did it regardless.
Step by step I have been feeling stronger and able to move a little more. The doctors were very keen that I walk a little as soon as possible. Here I am one week after surgery doing a slow perambulation of the corridor. Those drip frames make excellent walking supports.
In other, smaller differences, the staff here don’t routinely change your bedsheets. I had to ask. That didn’t feel like good nursing.
Everyone has been so supportive and kind and I have received so many messages of love and prayer from all around the world. I have felt blanketed in prayer and I am truly blessed to have so many good friends. Work have been great and very accommodating. I won’t be there for the start of the school year but I have had the chance to put plans in place. Hopefully it will all run smoothly.
I know that what I have been through has been quite traumatic but I honestly believe that I have followed a call to be here in China and maybe this is why. God moves in mysterious ways and I can only be grateful that He has put me here at this time with a chance of having this tumor removed before it became fatal. I would never have known about it otherwise. I am in a wonderful prayer community and that has been of huge comfort too. It has been hard being so far away from my family but Skype is amazing and I have been able to talk to them all from my bed.
Concordia and Trinity have combined forces to organize what is known as a meal train. We don’t have this at home but I think we should. Friends have signed up to bring us food every day for a fortnight from when we get home. It’s such a bonus to have practical care and support like this. Earlier in the year I cooked for others never thinking that I would be on the receiving end of the scheme.
Recovery will be slow as I get tired easily. I have been told not to lift anything for 3 months (which will be a challenge) not even a kettle.
In many ways this whole experience has been similar to being in a quarantine hotel just with more sharp stabby things and incredible pain!
I am very grateful for the skilled surgeons, the medical insurance and state of the art scanning and robot technology that has enabled me to have this tumor removed only 6 weeks after discovery. I’m not sure, however that I would want to go into a Chinese state hospital again…
We have now had a report back from the hospital which indicates that the tumor is a Mixed Epithelial and Stromal Tumor of the Kidney (MESTK). Once again communication hasn’t been great but Dr Google tells me that these are quite rare and unlikely to be cancer.