The adventures of DaddyBird and Kangayayaroo as they move from the United Arab Emirates to Shanghai, China, and venture to explore the Eastern hemisphere from there.
It has been a long long time since my last post. I have not disappeared off the face of the planet, but we are no longer “living the travel channel,” so to speak. We have returned to America and are very unlikely to leave it again. The thought of getting on an airplane is anathema to me. It’s the last thing I want to do.
Moving was ridiculously stressful and complicated (due to COVID restrictions). We had to pack and ship belongings, dispose of the rest of our belongings, try to find a home for our cats (did not work out), get copies of all my medical records (in Chinese), arrange to travel by land from Xi’an to Shanghai, get the cats vaccinated and their travel papers, get a flight that included our cats, get permission to leave our apartment complex because of a COVID lock down that occurred the night before we were to leave, find a hotel that allowed pets near the Shanghai airport, accomplish final errands in Shanghai, and meet with friends to say goodbye. There are so many details I am leaving out, but I don’t really want to relive them by describing them.
On August 22nd, we finally got on a plane with our cats in the cabin with us (not as cargo thankfully). It was a long flight. The plane was packed. The cats were stressed. But, we finally made it.
Over the last few years, we have settled in with family. Daddybird went from just taking care of me to taking care of his parents, as well. Huge transition.
Thankfully, we were able to get health insurance coverage through the Affordable Care Act. My USA medical experience was the complete opposite of my China experience. By December I was done with chemotherapy and clear of any signs of disease. The treatment I received in China was effective, but the stress of the chaos was huge. I really appreciated the quiet of the US waiting rooms. I appreciated clear communications with doctors. I was able to face surgery trusting the doctor and staff and knowing exactly what would happen.
Compare the waiting “rooms.” Worlds apart.
We won’t be traveling much, if at all, but I will continue this blog. I have been doing a lot of genealogical research, so I will switch to time travel, instead of world travel. I’ve uncovered some interesting stories and will share them here.
The former post – Sisyphus Tries to Get Medical Care – detailed the saga of getting medical care. I’ve been asked to elaborate about the doctor who guessed correctly that I had ovarian cancer, but the ultrasound scan shot down her theory. I had repeated ultrasounds in this process and the results were always “ovaries look normal.” Apparently, ultrasound scans are not very accurate or useful. It may be because I do not have one big tumor. I have sneaky cancer.
Once I was admitted to the hospital, some progress was made. The first day they did the procedure to drain the excess fluid from my abdominal cavity. That provided some immediate pain relief. I was conscious for the procedure. The hospital is a teaching facility, so I’m pretty sure the procedure was done by a student. A tube was inserted into my abdomen (based on an X marks the spot by the ultrasound technician) and left in. It was attached to a bag where the fluid would be collected. During the procedure, three test tubes of fluid were collected for testing, so it was weird when we were asked to provide three water bottles more of fluid for testing. Just how much fluid is needed for testing? Also, this additional fluid was collected in used water bottles, so what about sterile containers?
Quality lab sample collection
Our medical insurance company provided help through two local representatives. They were supposed to assist us with navigating hospital processes and paperwork as well as translation. However, it very quickly became obvious that they had not received much in the way of training. They definitely were not qualified translators. The representatives would have a long conversation with hospital staff without translating any of it for us. Eventually, I got in the habit of asking “what was that about?” which would get me a sentence or two explanation. Definitely not translation. They would also trade off, alternating days to be with us which did not provide much in the way of consistency. Initially, we also had assistance from school staff. Sometimes it was a bit crowded in my room.
On the third day of hospital stay a PET CT scan was done. This involved the injection of a contrast substance, drinking a lot of water, and then urinating right before the scan. No one explained the why of this process. There was one toilet and, yes, it was a squat toilet. This boggles the mind. Why would there not be a western style toilet? I was not the only patient in a wheelchair. I have degenerative neuropathy and stand or walk with the aid of two canes. Squatting over a hole in the floor to urinate is not practical. It was not a good situation and I will NOT describe it in detail.
The next day a biopsy was done. In the hospital buildings there is no such thing as a lobby or waiting area, so hallways function as waiting areas. So, when we finally found the room where the biopsy was to be done, there was a group of men standing outside in the hallway. The room was shabby and serving as a storage area for boxes and unused furniture. It did not impress as being a sterile procedure space. There were no privacy measures. The door to the room with the group of strangers loitering outside was open the entire time. I wanted my husband to stay with me and hold my hand while this questionable procedure was done, but the technicians (or whatever their job title might be) insisted that he could not stay. He had to go out in the hall, but I guess he could have watched the whole procedure from there because they never closed the door. It was like being in a 3 Stooges movie.
Later that day the results of the PET CT scan was delivered by the oncologist. It is a full color, multi-page, spiral bound booklet. She paged through it, pointing at the images, indicating the many tumors that were evident – “there, and there, and there, and there, …” It was overwhelming and not exactly good bedside manner. So, on this day it became official that I have ovarian cancer that has spread around my abdominal cavity and two areas of the respiratory cavity. The tumors are in the peritoneal tissue, not other vital organs, which may be the only positive aspect of this situation.
The following day, the results of the 3+ bottles of abdominal fluid came back confirming the diagnosis. This was a Friday, so next followed the weekend when nothing is done – no testing, no doctor visit, just sit around and wait for Monday.
On Monday, CT and ultrasound scans were done of my lungs. I was having shortness of breath. The scans showed fluid in my respiratory cavity. This meant two drains being inserted, one on each side of my back. This was the most painful experience. The insertion of the drains was again done while I was conscious by a student. The fluid coming out of the right side was a really scary color. Any movement I made resulted in excruciating pain. In the night, a bubbling/rattling sensation began on my right side. I pressed the call button THREE TIMES before the nurse finally came to check on me. She eventually brought in the night shift doctor. He listened with a stethoscope and tried to tell me it was normal. No need to worry. I was not convinced. It seemed pretty abnormal to me. Thankfully, the next day my oncologist agreed to have the tubes removed. She had also claimed it was normal, that things were rubbing together because the fluid had been removed. (Later, much later, I translated one of the scan reports and it seemed to indicate that there was a problem with my lung caused by the pressure of the fluid.)
I think it was on the day when the PET CT report was presented, the oncologist actually looked at me, smiled and told me my prognosis was good. However, she took my husband out into the hall to tell him that the diagnosis was stage four cancer and very serious. She told him not to tell me. He pressed her for a time frame and she hedged saying it was hard to predict, but maybe 1-2 years. This kind of “don’t tell the patient” secrecy is common in the Chinese culture. It is assumed that if the patient knows the truth, they will become deeply depressed and give up on living. Unfortunately, it has cast shade on anything the oncologist tells us. We cannot assume we are being told the truth. We are not told much of anything either.
Nothing about the hospital experience is “patient centered.” There are no waiting areas, only hallways or outside areas. In hospital rooms, there may be a bathroom, but there is no soap or towels. Lab and scan results have to be collected by the patient and brought to the doctor. The results have to be collected from computer kiosks around the hospital. Of course, each kiosk is specific to a certain type of report. This involves a ridiculous amount of time and waiting in very long lines.
Hallway waiting area outside outpatient consultation roomsConstant traffic in crowded hallways. The hospital is a noisy place with constant hustle and bustle.The waiting line for an ECG.Waiting in a high traffic hallway for the CT scan.
Nurses will perform medical actions, but your family is actually expected to provide basic care. The nurses were concerned when my husband wasn’t present. “Where’s your husband????” He was expected to stay in the room with me. He was expected to sleep on a 5 foot long wooden bench. (Luckily they moved us into a private room the afternoon of the first day or he wouldn’t have had that much.) Because of COVID restrictions, he was supposed to stay the entire time I was there. However, we could not leave our cats unattended that whole time. He would go out to get food from the cafeteria, since the hospital does not provide or deliver food to the rooms, and use that as a way to leave the hospital, go home, take care of our pets and get an occasional comfortable night’s sleep in an actual bed.
Family sleeping space
The oncology ward is shabby. The walls are scuffed and haven’t been painted in a long time. The beds are old and hand cranked to raise or lower. The bathroom, ugh, the warmer the weather got the stinkier the bathroom was. I never saw a top on any of the toilet tanks. I didn’t know just how shabby this ward was until I spent a week in the dermatology ward for shingles and dehydration. Big difference.
Old bed and scuffed up wallsShabby bathroom with a tripping hazard for an entrance.The room, my husband sitting on my rented wheelchair as there were only tiny wooden stools provided for family.
I received the first chemotherapy treatment on April 20th. During this treatment the insurance representative got into a heated discussion while the student doctor was mixing the medicine in what seemed like a very complicated way. The conversation was all in Chinese, of course, so I do not know what the content was, but I could tell by the student doctor’s volume and tone that she was quite irritated by the rep. The last thing I wanted was to receive messed up medicine because this rep didn’t have the good sense to shut up, so I had to interrupt and tell her to wait until later because she was distracting the doctor from something important and complicated. Thankfully she shut up. Later, I complained to the school medical staff and indicated that I did not want any more help from this particular insurance representative. It was not her first mistake, but it was an intolerable one in my opinion. We did not see her again.
I’ve received six chemotherapy treatments so far. Technically, I should have another, but we have made arrangements to leave China, so this ends my treatment here. My oncologist has told me next to nothing. I have not seen her face to face since May 30th. What I know about my condition I know because I have spot translated the medical records and gone over the blood test reports to compare and look for improvements. My CA 125 blood test has gone from 3111 to 37.5 (top of the normal range is 35), so that is encouraging.
Treatments were three weeks apart. Treatment week involved a trip to the outpatient consultation for the doctor to order the tests needed before admission. Then we had to spend most of a day getting the tests done. Then the actual treatment day. At first we tried doing this in two days, combining the consultation with getting tests done. This was very exhausting for me. We could get the ECG and blood draw done fairly easily, but the CT scan and ultrasound took much more time. Often, the ultrasound was scheduled for very late in the day, so we would go home so I could take a nap and then we would return. Eventually, I stopped going to the consultation and just my husband and the insurance rep would go. The doctor didn’t seem to need to see me anyway. Then we would go early in the morning to do the tests and my rep figured out that when scheduling the ultrasound he could tell them it was difficult for me to wait and they would send us to a place with a short line. Armed with this knowledge we could be done by noon instead of 7 pm, no nap needed. Occasionally, the rep would suggest that we needed to print out reports and lab results. At first, I stayed for this even though I wasn’t needed, but it took hours and was draining for me to just wait around in the loud and noisy hospital hallways. So, I stopped staying or joining in this activity. DaddyBird would accompany the rep for these sessions because our very precious hospital ID card was necessary and the rep had “lost” it twice during report printing activities. The card had to be protected and we often had to ask the rep “do you have the card?”
This is just the highlights. There are more ridiculous stories of red tape and frustration, but you have probably had enough. August 23, if all goes well, we will be safe and sound in California and a new medical adventure will begin.
I am overdue for blogging. I probably should have blogged about our experience of being in COVID total lock down in Xi’an from December 23, 2021 – January 23, 2022. We were given very little warning. We were suspecting it, expecting it, but not sure what form it would take, when it would happen, or how long it would go. DaddyBird did some stocking up, but in the end it was not sufficient. You don’t always start by saying “I need a month’s worth of cat food and fresh cat litter.” The announcement was made December 22nd that lock down would happen at midnight and that only one person from each household would be allowed to go out every other day to obtain necessities. By 8:00 am the next morning it had changed to no one leaves the household and everyone should wait to be called for testing. The lock down was citywide.
Other than food and supplies, this was not a big deal for us. My school holiday had just started, but there was nowhere to go. Traveling was out of the question even without lock down. Being a tourist within Xi’an, also out of the question as museums and sites have been mostly closed for months. So, stay at home, wear pajamas, watch TV, and read a book.
The two main challenges were communication and obtaining food deliveries. A large number of coworkers live in our same apartment complex, so we chatted online about how long was the testing line, where could we get food, and splitting up the huge amounts of food that were delivered. An online chat group was created for our building by the management company, but strangely they included apartment owners who were not physically present, maybe not even in Xi’an. (The amusing part was when the government delivered truck loads of cabbage and the absent owners wanted to know how to get their share.) All official communications were in Chinese, so the computer translations were often confusing. A routine was worked out eventually and we got used to daily testing and announcements about what to do and not do.
DaddyBird was in charge of getting food delivered. We also had a cooperative group among the school employees for ordering food from a specific supplier found by our support staff. The deliveries, however, were large quantities – like a huge sack of potatoes, a whole flat of raspberries or blueberries, or a whole box of avocados (that all ripen simultaneously). One day the government delivered two HUGE cabbages to each household and the jokes popped up about Mrs Bucket’s cabbage soup recipe. My dear vegan husband took pity on me about halfway through the ordeal and ordered a piece of pork, which he stretched for several meals on my behalf.
Thirty days did prove to be a long stint for me. I became lethargic and bored. It was hard to stay self-motivated and active.
Before this lock down occurred I had planned to make a doctor appointment. I had been putting it off until holiday so as not to miss work. Once the lock down started, there was no way to pursue that, as the whole city was in the same situation. As the weeks rolled by and I waited, my physical condition got worse. I had a cough that would not go away. Acid reflux, aggravated by the cough, was making it impossible to finish a meal. I was having all kinds of abdominal and chest pain causing me to be concerned that something really wrong was happening. So, I finally contacted my school medical staff for assistance in getting to a hospital.
This became quite a production. The apartment complex management had to be involved in order for me to leave the compound and be transported to the hospital. There were no taxis – the whole city was locked down. A volunteer in PPE had to accompany us in an ambulance to the hospital and facilitate our experience as interpreter and guide. (The ambulance was operated by a single person who clearly was just a driver, not trained emergency personnel.) I had to walk the 1/4 mile to the south gate of the complex to get to the ambulance (not sure why it couldn’t come get me). Once at the ambulance, I had to crawl into it in a really awkward way with no assistance. No gurney or sliding smoothly in. The volunteer in PPE, DaddyBird, and myself rode to the nearest international hospital. (Don’t get too excited by the word “international” here because it denotes very little as near as I can tell.) Our volunteer spoke to people to figure out where we should go. Not the emergency entrance, even though I was having chest pain and difficulty breathing. It was another entrance a long walk down the side of the building. We asked about a wheelchair and our volunteer went off to see about it. We had to rent a wheelchair for 60.00 RMB. I was put through a few tests – blood test, CT scan – before being admitted to inpatient.
Up on the inpatient floor, everything was locked down. Everything was bare bones. I had a double room to myself with an ensuite bathroom, but there was no soap or towels (not even paper towels) provided. Toilet paper was included, thank goodness. There was a thin blanket on the rock hard bed and a flat pillow. That was it. No water pitcher or glass to drink from. No amenities whatsoever. The family of a patient is expected to stay with the patient and provide care – food, water, etc. If DaddyBird stayed with me, he would be under lock down in the hospital room, so we decided that he should go home and I would go it alone.
The food was terrible. Beyond terrible.
rice and intestines (I think they are not real but made of imitation meat product)plain flour bun, bowl of mullet gruel, pickled vegetables
I spent four days never leaving the hospital room. The only diagnostic tests that were done were ones that could be done in the room. The doctor did no physical examination. She spoke Chinese to the school nurse over the phone and I was told almost nothing. The tests kept coming back normal. The doctor did, however, manage to send my blood pressure soaring by meddling with my medication for no good reason. At the end of the four days, she decided that I had a pulmonary infection, despite the fact that there was no evidence of this, but it was something she could throw antibiotics at, so that is the diagnosis she chose out of thin air. I was just glad to get out of there.
After our citywide lock down ended, I went to a clinic with a doctor who is a native English speaker. By then, I had added blood clot in my left leg to my list of ailments. Together we figured out that my cough was lingering because of low grade sinusitis, my acid reflux could be controlled with a pill, and that I have sleep apnea contributing to the whole mess. After those were identified/addressed, I still had generalized constant abdominal pain. The CT scan, way back in January, had shown fluid build up in my abdomen. The hospital doctor thought this was nothing and would just go away. Not true. So, after many ultrasound scans and another CT scan, I was advised that the fluid should be drained and tested for cancer. (Time stamp: we are now in late March.) In America, this would be an outpatient procedure, but not in China. Nothing invasive is done outpatient. Several days went by as first we had to schedule the CT scan, then we had to schedule a consult with the oncologist about the CT scan. In this consultation, I learned nearly nothing I hadn’t already known. This oncologist referred me to another new doctor, just arrived from studying in the States who knew some English. I stupidly got my hopes up.
Having previously been through two inpatient hospital experiences that were supposed to diagnose my problem and having come out of both of these experiences with wrong diagnoses, I was not eager to head back into another inpatient experience of indeterminate length only to come out with another bad diagnosis. Several of my symptoms point to congestive heart failure. Only one points to cancer. I don’t want to waste my time on something I don’t have. Been there, done that.
But we met with the next doctor. Her English was quite rough. She started by telling me that she knew all about my case, which she did not. She had decided that my problem was probably ovarian cancer because of my age and because of something that showed on the CT scan. I told her to go ahead and test for cancer, but that I think I have a heart problem, so when the cancer tests come out negative, I go home. To her credit, she asked why I thought I have a heart problem and actually looked at the medical records to see what I was talking about. She decided that we should immediately do an ultrasound of my ovaries to check her theory. We did and her theory was shot down. We left that appointment with the agreement that I would be admitted to inpatient care for draining the abdominal fluid and performing tests, but it would have to wait until after the Qing Ming holiday (because Chinese hospitals do not provide 24/7/365 medical care like USA hospitals do. Their lab technicians don’t work weekends or holidays.) This meant that the earliest I could be admitted was Thursday. Wednesday, the nurse confirmed the admission, asked some questions, and asked me to write up a medical history for the doctor. Remember, this doctor started by saying she knew all about my case. So, I wrote up my medical history and submitted it. Finally, someone was asking about important things. Later that evening, I was told that the doctor now refused to treat me. She dressed it up as concern for my welfare. There was no cardiac department in her hospital, so if I had a heart issue, I should go to another hospital. I was furious. I still am. She wasted a whole week of my time making me wait for her while I continued to swell up and drown in my own juices.
So, Friday, we saw yet another doctor.
The outpatient appointment was at 9:30. It was a bit of a cattle call. So many people there is no place to sit. We stand outside the doctor’s door waiting. There is no such thing as heating/cooling in Chinese hospitals, so it is a bit sweltering. I was afraid I was going to faint before I could get in. My name finally appears on the screen above the door, but that does not seem to mean I can go in because there is still someone else in there. A man just slipped in there ahead of us, because that is what people do. Our facilitator nurse went in and left us standing in the hallway for a long time. When she came out, she indicated we still needed to wait and I say “I have to sit.” The only place we can find to sit is far away. Finally, we get in to see the doctor, but the guy before us was still wrapping up his business with the doctor. Finally, he leaves and the doctor can go over my case with the nurse and look at my medical file. A woman and young man forced their way into the room and interrupted the doctor because they have papers they want to have signed. At first, I thought they were mother and son, but no, he had his own papers he wanted signed. As these two exit having gotten their signatures, three more pushed in. I burst out laughing. It was like watching the Three Stooges. Luckily, the doctor wised up and pushed them out of the room. I told DaddyBird that he better stand in front of the door to stop any more interlopers .
We managed an actual, uninterrupted physical exam. The doctor indicated that I should be admitted to have the fluid drained and tested. She gave us several slips for additional tests to have done that day before we left. And I kept my mouth shut about cancer versus heart problem. I decided to wait until I am safely checked in before I rock that boat.
We had arrived at 9:30. We were still going around the hospital getting various tests done three hours later. The CT and ultrasound could not be scheduled until 4 pm. We went home so I could take a nap before coming back to complete the tasks. The CT scan went fairly quickly, but was done in an alleyway.
The ultrasound waiting room was full of people. There was a number system and a screen showing what numbers were currently up. There were approximately 150 people scheduled before me. It took 2 hours to finally complete the ultrasound.
For a couple of years now I have wanted to purchase an electric wheelchair. It proved to be very challenging. I could find what I wanted with online shopping, but this is the kind of purchase you don’t really want to do online. You need to sit in it. Make sure it fits (especially in a country where the average person is half your size). You want to test drive it. Therefore, I needed to find a store where I could see multiple models.
Sounds easy, right?
I had trouble finding stores by searching the internet in English. It just wasn’t happening. So, I thought a medical clinic will know where I can get this. I made an appointment with a neurologist at the last clinic where I had been seen. The clinic is fairly new, so they hadn’t arranged for large medical equipment before, so it took them a while to look into it. They also submitted a request to my medical insurance. The insurance company would only cover a manual wheelchair and turned me down for that, even. The clinic called me on the phone to tell me they had found an electric wheelchair for me which cost RMB 5000.00, would I like to buy it. Over the phone? Sight unseen? Uh, no. I would be better off getting the one from the online source. So, the clinic sent me an email with a picture and the chair’s specs. I still felt like I was being offered a pig in a poke.
I finally got smart and asked my Chinese coworker to help me find a store with multiple models where I could go in person and try them out.
We went. The shop owners didn’t speak any English, but we managed with reading the tags, sitting in different models, and doing a tiny test drive in the small space available. We then signaled that we wanted this model. The clerk showed us how it works – folding it up, how the charger connects, how the controller is attached, how to disengage the motors so it can be pushed. I had been waiting and wanting this for 2 years, so I took the plunge.
It is definitely a transition. Shanghai is not a very wheelchair friendly city. The stores or restaurants I can access are very few. I need to go to a new dentist, but I need my husband to go first and scope it out to see if I can go by chair or have to walk. Is there a ramp? Is there an elevator? Are there steps up to the elevator?
I had thought I would be able to arrange for a driver to get me and the chair to work, so that the driver could be accustomed to the chair and how to put it in the trunk. Nope. Not easy.
So, I had to figure out what route I can take to drive the chair itself to and from work. The sidewalks on our street have a significant section where the sidewalk is barely passable by foot and impossible by chair, so that would mean being in the street itself. Not what I want to be doing. So, there is a pedestrian path along a waterway, so I take that instead. Then I travel down a sidewalk along a major street crossing two intersections. However, I found a couple of obstacles. One intersection has the lowered curbs, but the curb is still too high for the chair. For a while I would stop, turn off the chair, get out of the chair, disengage the motors so that I could push the chair over the curb. The second obstacle is a driveway which I have to cross that is both steep and mounded. Going toward work, I can manage it, but coming the other direction gravity just pulls the chair down the slope and toward the very busy street. After a few days of trying to deal with these challenges, I switched the route to just avoid them. My route is a little longer, but safer. I now travel down a pedestrianized street instead.
The other obstacles are other people. People on scooters. People parking on sidewalks.
No problem, I can thread my camel through that needle.Even the pedestrians couldn’t get past this one.
Then there is the challenge of getting in and out of our apartment building as the ramp is sometimes blocked by cars or scooters.
I can squeeze by this, but it is sometimes worse.
The apartment management has been notified and has promised to put up signage – that sad little orange sign in the upper left corner of the picture is it. For about 24 hours these yellow lines were present, but they disappeared. So, I just keep taking pictures when the ramp is blocked and reporting it.
I get to putter down this path under the willows.Most of my route is tree lined. On sunny days I wear my dashing hat.
For the most part, I only use the chair to get to and from work. I’ve been to the nearby department store once. That was the most pleasant shopping trip I’ve had in a long time. I wasn’t exhausted or in pain.
I haven’t ventured onto the metro, yet. Maybe that’s the next transition adventure.
I was going to wait until the dust settles and our “quarantine” ends, but it looks like it will continue into April, if not longer. Everything is tentative.
We were in the States for our Lunar New Year holiday in late January. I wore a mask at the airport and for most of the flight. [N95 masks are not comfortable for 16+ hours.] Unfortunately, I had a form of flu at Christmas time and have had a lingering cough. I took various cough medicines and a constant supply of cough drops, but not much has helped. It just has to run its course. However, going around coughing in the current epidemic situation can be concerning.
Actually, my cough did not seem to be a problem until I was in the States. Complete strangers would hear me cough (with my mask on or tissue covering my mouth) and their heads would snap around to see who was coughing. It is very interesting that in a country where there were few, if any cases, at that time, the anxiety was so high. Even after returning to China, I have not seen that kind of reaction. The Chinese are just going about their lives as best they can. Wearing masks when outside their homes. Submitting to having their temperature taken.
While we were in the States, news came that the school where I work would be closed due to the virus concerns, but that teaching and learning would continue online. This announcement also stated that we were required to return to Shanghai by February 2nd. This did not make sense to teachers who were in other countries. Countries with no occurrence of the disease. Why would they and their children return to a place where there might be a chance of infection. The expectation softened over time and it was agreed that some might want to stay out of the country for safety sake.
Also, one airline after another began to cancel flights to China. We weren’t certain if we would be stranded. We were returning on different dates and we both had to reschedule our flights and change planes twice in order to get home. We might have stayed in the States if it weren’t for our cats. We have a good cat sitting company who cares for them when we are gone and they agreed they could continue, if needed. We both chose to return. I am a homebody. I was traveling all over the place – Pennsylvania, North Dakota, and Oregon. I have not counted up the miles. I don’t want to know. I needed to get back to my home, my hubby, my cats, and my own bed.
Health inspectors came onto our plane after landing at Shanghai.
So, what is it like living in Shanghai during COVID-95? We stay home, for the most part. Ventures outside are to go for groceries or supplies. Normally, we have our groceries delivered to the door. Early on, we got a message from our grocery delivery company indicating that deliveries would be left outside our door. We would receive a message that the delivery had been made and the delivery person would leave. We could then retrieve the items without interaction, thereby reducing chance of disease transmission. Good, logical plan. Until … apartment management companies became responsible for health concerns. This meant that entrance into the apartment complexes became limited. Deliveries had to be left at the gate and we have to go out to the gate to retrieve them.
A fair amount of interaction happening at the gate.
When we do venture out of the apartment complex for more than just a delivery, we are asked why we are leaving. We say “food.” That works. When we return our temperature is taken to see if we have a fever. At first they were using our foreheads, but now they use the wrist area.
There was a news announcement of a confirmed case in our neighborhood indicating involvement of a grocery store DaddyBird had been to multiple times. Luckily, the person had only visited the store as a customer, not a member of the staff.
Word is that the store was closed briefly for a thorough cleaning.
About the same time as this news hit, a coworker posted a site where you can see a map of confirmed cases near you. (Although it doesn’t seem to know where I am.)
We have ventured out about once per week. Here is what it looked like on Laowai Jie (Foreigner Street – a 27 restaurant pedestrian area) on a Sunday afternoon.
In summation, at this point, I would say there are no panics. The stores are not suffering from empty shelves. We can get what we need, although delivery might take a little longer or be a little more challenging. Clearly, this time is hard on small businesses, like restaurants, who were either forced to close completely, or to provide food by delivery only, or are open, but have little to no customers.
We are just dealing with boredom and being sedentary.
So, in continuation of the last post, I have had yet another hospital experience. For many years, I have had difficulty walking. I have had fibromyalgia, osteoarthritis, and fallen arches for 11 years, but something else was afoot because my ability to walk was gradually declining.
In 2016, I went to a clinic near work to see if I could get some help with this. Unfortunately, it turned out to be a poor choice. The doctor was initially excited about the condition, but after MRI exams and a consultation with a spine surgeon ruled out surgery, the doctor’s interest waned. The next step was a consultation with a neurologist. Now, consultation is a rather grand word for what actually happened. The clinic (they call themselves a hospital, but … uh, no) has a small staff and any specialists are pulled in from the larger Chinese hospitals (genuine hospitals). These specialists do not speak much, if any, English. This meant having an interpreter – the nurse who speaks a micron more English than the specialist. Communication is the biggest obstacle in getting any care for really serious conditions.
After this brief consultation, the neurologist recommended an electromyogram examination. This could not be done at the clinic, so they scheduled it to be done at one of the main hospitals over a month later. This exam was quite an experience in itself. I was met by one of the clinic nurses so that she could guide me to the right place and communicate with the staff. The building was old, crowded, and not well designed for it’s purpose. The narrow halls were crowded with Chinese people waiting to be treated or tested. The exam room was crowded and lacked privacy. The exam consisted of having my leg shocked to test the conduction of my nerves. Being electrically shocked was just as much fun as it sounds. Then they told me they were going to insert an electrode into my muscles. I don’t think anyone was wearing rubber gloves. All in all, I did not get a good impression of one of the biggest and well respected hospitals.
We had summer travel, so it was fall before I went back to the clinic to see what was next. More than once I had to schedule an appointment with the doctor to prod him to move us on to the next step. Ridiculous. When DaddyBird would accompany me, the doctor would look only at him and tell him what was going on as if I wasn’t in the room. I could tell you the nationality of this doctor (not Chinese) and that would explain it, but that would be spreading stereotypes. (Some times stereotypes are earned.) Ridiculous sexism.
Another consultation with the neurologist resulted in a recommendation for a full neurological work up in the Chinese hospital previously mentioned. The clinic doctor was to schedule this. Time went on … I saw the doctor in passing while at a physical therapy session and reminded him. “Oh, yes, next week…” Next week came and went, so I texted him a reminder. Again, no appointment. So, after a month of him not doing anything about it, I gave up on him. By this time, I had breast cancer concerns anyway, so I had to prioritize.
So, fast forward through the breast cancer experience, this spring I decided I needed to get back to my mobility issues. This time I chose to go to the international medical care center that had done DaddyBird’s angioplasty procedures. They had done good work with little hassle. So, after an initial consultation with a neurologist, he recommended I be admitted to the hospital for 5 days to have thorough testing done.
It was a tight squeeze at this time of year because one of my library assistants was leaving for good and I still hadn’t hired a replacement. The end of the school year is approaching, so we are in the midst of getting textbooks back. A busy time.
So, into the hospital I went and the tests began. Another electromyogram, this time done much more professionally and thoroughly. They tested both legs, both arms, and my head. So fun having electrode pins stuck into one’s scalp. They checked my heart, my arteries, my abdomen, my head, my back, etc. On one morning they took 12 vials of blood for testing. All told over the course of 11 days, I think they took 20 vials.
I mustn’t leave out the most crazy test. They didn’t tell me what it was for. I knew I was in trouble when I was wheeled in and saw the machine. It was a chair, not unlike an astronaut’s chair with lots of straps, and it was mounted on a big wheel. They were going to take me for a spin. The technician strapped me in, but not very tightly. My head was secured and black out goggles applied. She told me to keep my eyes open. Then she said that I would be moved quickly, but not too fast. Don’t worry. That is what happened. Unfortunately, she had strapped me in so loosely, that I was banged around in the chair. Not fun for someone with fibromyalgia. I passed the test, whatever it is, but I won’t be joining NASA any time soon.
By day three they confirmed that I had peripheral neuropathy, but cause or specific type was still unidentified. A team of doctors were working on my case, so there was much discussion and different opinions.
Day four was the spinal tap. That is a scary thing to have done, but the painful parts were the local anesthetic shots and the pain after the shots wore off. Also, there was the challenge of getting into a fetal position and holding still. We are just poking into your spinal cord, relax, don’t move.
The tests from that were all normal. That was good news as things like multiple sclerosis would have shown up. Glad not to have that.
By the start of the second week, they decided it was probably Chronic Inflammatory Demyelinating Polyneuropathy OR Vaculitic Neuropathy. The treatment is same for both conditions, so it is a bit moot as to which label we put on it. A 5 day course of IV corticosteroid treatment began. More blood tests, another MRI, and daily exams.
Finally released after 11 days, I will continue to take medications for another month. Will go back for a checkup three weeks from now before summer travel. The symptoms came on over the long term and reversal will take some time. Also, because I have had this condition for so many years undiagnosed and untreated, some of my nerves may have died and there is no coming back from that, so recovery of mobility may be limited. I will take what I can get.
A few cultural notes on being in a Chinese medical facility – English communication is always the big obstacle. Each doctor and nurse has a different level of proficiency. The young female doctor had the best English and was quick with a translation app to make sure medical terms were clear. That was helpful. The rest of my information came from the internet – checking medication side effects, condition symptoms, treatment options, etc.
In China, there is little yielding or waiting for others. For example, people who want to get onto an elevator will wait right in front of the doors and when they open immediately try to push their way in without considering that someone might want to get out and make room for them to get in. The same applied to exam rooms. As soon as the MRI room door opened, my helper had me up and walking in without waiting for the previous patient and helper to exit the room. There was not enough room for four people to pass.
As an inpatient of the international medical care department, I had the uncomfortable experience of being wheeled through a waiting room where about 80 women were waiting for ultrasound tests. I was in and out in about 5-10 minutes. This happens frequently. Foreigners are moved to the front of the line.
Having been through all of this, my recommendation for anyone with a serious illness or a mysterious condition, skip the local “hospital” and go straight to an international care facility connected with a large, well respected hospital. I hope this will be our last experience with major illness. I’ve probably just jinxed us.
You may have noticed a paucity of posts over the last year, or so. There is a reason for that. We have both been involved in medical concerns.
We had a rough spring and summer, then in August, DaddyBird complained of having a sore throat that wouldn’t go away. Then he noticed that when he was physically active the pain would spread down to his chest. Uh oh, angina. He saw a doctor who referred him to a cardiologist who referred him to a hospital for an angiogram. November and early December involved two angioplasty procedures to clear his blocked arteries.
My part in the medical drama of 2017 actually started in October 2016 when I went in for a routine check-up and a lump was identified in my right breast. Several years ago when we were still in the USA, I found my first breast lump. I freaked and assumed the worst because I have a significant family history of cancer. It took a while to get a doctor appointment, and then due to the joys of HMO medical care, it took another two weeks before I could have a diagnostic mammogram. That lump turned out to be a liquid filled cyst, nothing to worry about, although the delay of medical care gave me plenty of time to think the worst.
This time, the OB/GYN looked at a same day mammogram and said we need an MRI. So I did the MRI. After the MRI, she referred me to the surgeon. I looked at the written reports of both the mammogram and the MRI. They were both vague. “It might be something or nothing.” (That’s not a direct quote.) When I got to the appointment with the surgeon, he had no idea why I was there. The OB/GYN had not communicated anything. #*%($)#*%*! He scrambled around and finally found the written report for one of the tests and said “It’s probably nothing. Come back in 6 months.” I went away quite displeased. The clinic sent me an automated survey asking about my visit. I let them have it with both barrels. I named both doctors and explained how they had dropped the ball and I was not pleased. (I haven’t received one of these survey requests since. Probably threw their customer satisfaction statistics off.)
So … six months later, I go back to this surgeon. He is much more attentive and prepared this time. He gives me three options – Wait and see, Biopsy, and Lumpectomy. I cannot think why I would want to keep this lump and have to be periodically checking on it to see if it has turned against me. So, lumpectomy it is. Let’s just get rid of it. So, May of 2017 the first lump is removed, easy peasy. The procedure is so minimal that I am back at work the next day. The pathology report came quickly and the surgeon said “nothing to worry about.”
Yes, you read right. I said “first lump.” By the end of August I had a second. This time it hurt. Constant pain. Back to the surgeon. They do an ultrasound. I had seen the first lump and the second on the ultrasound screen and they look very different. The first was like a walnut, the second looks like an ominous black cloud. The lump is close to the suture for the first lumpectomy. The surgeon says “not to worry, what has probably happened is that the space where the lump was has filled with liquid, come back in one month.” He gives me ibuprofen for the pain, completely ineffective for pain relief.
So … back in one month, now the surgeon has changed his tune. He consulted with someone who actually understood the ultrasound and it is not fluid. Now he says that the first surgery may have triggered other tissue to grow into a lump. Once again, my options are – Wait and see, Biopsy, and Lumpectomy. This time I opted for biopsy, thinking it could be done quickly. HA! At this clinic it could only be done once a week on Saturdays, so it was scheduled for 2 weeks hence. Then I got a call postponing it for another week. 3 weeks. After 2 weeks I was laying in bed with my boob hurting so bad that I couldn’t sleep and knowing that it was getting bigger. It seemed clear to me that the surgeon was guessing. I decided a second opinion was needed.
Right before the first lumpectomy, the insurance company had recommended a different clinic with surgeons who specialize in breast health. I had brushed off that suggestion because I didn’t want to delay. I wanted that lump out and it seemed straightforward. Now that things are more complex, I attempted to make an appointment at that clinic. The person who answered the phone spoke only Chinese. So, I tried the website “make an appointment” form, which did not work. So, I contacted the insurance case nurse who had suggested the clinic in the first place by email and asked her to help me make an appointment. She did. (Our insurance company is freaking fantastic.)
In late October, I switched doctors and went in for a biopsy. Since it was supposed to be a simple collection of a bit of tissue, I was awake for this procedure. Once she opened it up, she just took the whole thing out. I don’t recommend vivisection. Not fun.
At the beginning of September the second lump was 2.5 cm. By the end of October when it was removed it was 5 cm. Doubled in size.
It was supposed to take 5-7 working days for the pathology report, but it actually took 3 weeks. A very long difficult 3 weeks. I went back to the original clinic and got copies of all the reports. Now that I had the original pathology report I could see that it said “borderline” not “benign.” The second pathology report finally came and this time it was “malignant.” The report took 3 weeks, but by 2 weeks I already had a third lump.
A third lump.
Turns out I have a rare type of breast cancer. The good news is that it rarely spreads beyond the breast. The bad news is that it tends to reoccur, as I can attest after a third lump.
I found this out only by research on the internet. The main obstacle all along has been language barrier. If one speaks NO Chinese (to my shame) and the doctor speaks only enough English to get by, it can be impossible to have the kind of in depth conversations that are necessary with major illness.
So, next step, another surgical procedure to collect tissue that had been around the second lump for on-the-spot testing. If it was malignant, the surgery would turn into a mastectomy. If not, I would get to keep my mangled breast. It was a big week for us as DaddyBird was to be in another hospital for his second angioplasty. He got me settled into my hospital and was there when I came out of surgery, but then was off to his own hospital experience. Different hospitals, so we communicated via chat and video call. We were both released on Friday.
The results of the third surgery – removal of the third lump and the test of the neighboring tissue was not malignant. Two boobs enter, two boobs leave.
With exactly one week between release from the hospital (for both DaddyBird and I ) and our flight to Prague for Christmas with BabyBird, we tried to leave the stress behind and enjoy the holiday.
In late January, I had a post surgery ultrasound in search of lump number four.
Surprisingly and happily, there is no lump number four. So far, so good.
So, now you know why I have posted so little of our adventures over 2017.
You may have noticed that there has been a nearly month long gap in posting to this blog. One reason is that we were a bit preoccupied with our dear cat Oliver who had major surgery. He is quirky, funny, loving, charming, and loud, but he is not the smartest penny in the coin purse when it comes to aluminum foil. He thinks it is tasty, so we endeavor to keep it out of reach. This has worked for over five years.
Unbeknownst to us, there was a steel wool scrubber lurking under the kitchen cupboard, left by a previous tenant. Oliver found this one day, proceeded to play with it quietly in the kitchen, tear it apart and eat some of it. Long story short, this resulted in a three inch piece of steel wool becoming lodged in his intestine. The answer to that was major surgery to remove it.
Surgery always carries the possibility of not making it through, so we worried a bit. After surgery, there was the possibility of infection, so more worry about that. There was also the ridiculous number of pills we were supposed to shove down his throat. If you haven’t tried to administer pills to a cat, count yourself lucky. By the second week, he became complacent enough to swallow them without too much fuss.
As with his experience in quarantine, Oliver was majorly stressed just by being in the vet clinic, so they resorted to giving him Valium just so he would relax enough to eat food. Once he was home again, he was much happier.
DaddyBird had to play nursemaid for two weeks – minding feedings, litter box activities, medications, and supervised “baths”.
Happily, it all worked out and Oliver is back to his old self. He was in the vet clinic for five days. The interesting by product was seeing how lost Bert was without him. We have always assumed that Bert puts up with Oliver, but he was very lonesome without his buddy. Everything is back to normal now, for both.
We were spoiled by Sohailia. She was such a good dental hygienist that I looked forward to my cleanings. With her range of picks she would carefully clean each and every tooth with such a light touch that it tickled. She would examine each tooth for problems and evaluate the state of the gums. When she finished, she would report to the dentist any and all problems that she observed.
American dentistry is amazing. It comes complete with guilt trip. You can count on being asked how often you brush and if you floss. If you admit that you don’t floss, you’ll get a little lecture about how important it is. The last time I was at an American dentist office, they took a swab of my mouth and showed me the bacteria from my mouth under a microscope to try to shame me into spending more effort on my oral hygiene.
They also go to extreme lengths to retain teeth. I had the root canal done in one tooth three times before a dentist finally admitted that the whole thing had to go. The truth is that I would have been a lot healthier if it had been extracted instead of remodeled.
In the UAE, dentists are everywhere, but hygienists are few and far between. Every “cleaning” I’ve had so far has been done by the dentist with an electric powered tool. This cleaning tool experience is unpleasant, at best. It sure doesn’t hold a candle to Sohailia’s light touch.
The first two dentist experiences I’ve had in the UAE were unpleasant. I specifically requested anesthesia for any drilling to be done and the dentist blatantly ignored this request. I did not go back for more. Our insurance makes it even more annoying, because everything has to be preauthorized, even diagnostic x-rays. So, the first visit is a bit of a waste, because nothing can be done unless you are willing to pay for it out of pocket.
I seem to have finally found a good dentist. The cleaning still involved an electric power tool, but I survived. Before working on fillings, she asked if I wanted anesthesia and then actually gave it to me. Hoorah! She rebuilt a broken tooth rather nicely.
For the last month I have been on the Whole 30 Diet. It boils down to no dairy, no grains, no sugars or sugar substitutes, and no alcohol. I’ve been eating meat, vegetables and fruits.
The main purpose of this diet is to improve health. We learned of this from my mother-in-law whose testimonial can be read here. I have to admit that weight loss was the main motivator for me. However, I was tiring of the increased fibromyalgia, and painful muscle cramps. My blood pressure had been high and the doctor had placed me on medication for it. I was more than ready for better health and less weight.
The diet is actually very easy. It is just a matter of what is eaten, not how much is eaten. I stuffed myself plenty of times with yummy food and still lost weight. The only thing I truly longed for was chocolate.
The result of one month is that I’m 13 pounds lighter. I don’t wake up with muscle soreness. I’ve had very few muscle cramps. My blood pressure is nice and low.
I’ve added chocolate back in, in moderation. It is organic dark chocolate lightly sweetened with raw cane sugar. The diet continues and we’ll see what happens.
So, in continuation of the last post, I have had yet another hospital experience. For many years, I have had difficulty walking. I have had fibromyalgia, osteoarthritis, and fallen arches for 11 years, but something else was afoot because my ability to walk was gradually declining.
Living the Travel Channel 