The Big C and Me

Posted by Kanga, please do not reblog.

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 rooms

Constant 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 walls

Shabby 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.

Sisyphus Tries to Get Medical Care

Posted by Kanga, please do not reblog.

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.

(Time stamp of this saga: April 8th.)

Relocation to Xi’an China

In July, my seven years of working at an international school in Shanghai came to an end. We packed up our belongings and moved to start a new job, at a new school in Xi’an. It was not as simple as that sentence makes it appear.

DaddyBird was in charge of moving arrangements. I was in charge of working up until July 2 and dealing with all the paperwork involved in leaving the job. Luckily, it was simpler because we are staying in the country and did not have to deal with closing our bank accounts.

We contacted 3 moving companies and 2 actually responded in a timely manner. We chose Asian Tigers. They have a good reputation and the price was actually lower. On the Shanghai end, they were great. It took them a full day to pack up our belongings and take them off in a truck. Everything was carefully packed (except that we have never found the poles to one wire rack shelving unit). As for the Xi’an end experience, I will get to that later.

We needed to arrange how to get ourselves and the cats to Xi’an. Flying by airplane was not an option. In part, because of COVID19, which made it difficult for humans to fly and impossible for animals. Also, the stress of traveling by air would undoubtedly kill Oliver. So, we wanted to travel overland. Train travel was not an option, because pets are not allowed. Networking solved our problem. DaddyBird was talking to a friend about our moving plans and this friend knew a guy who had a van and could drive us across country.

We were concerned about a long drive (approximately 18 hours) with the cats. Bert would be okay, not happy, but okay. Oliver, however, does not cope well with travel of any kind. So, we contacted the owner of our cat sitting service and he came to give us some instruction on how to train the cats to prepare for travel. This involved getting them used to going into and being in their carriers. Step by step they would be acclimated to being carried in the carrier, going out into the hallway, going into the elevator, etc. Some of this did work. DaddyBird worked with them every evening and they got used to the carriers and being comfortable in them. However, we only had one month to accomplish this training and it was not enough time. Once Oliver went out into the hallway, the howling began. The progress that was made did help, however.

We also wanted to get some Valium for Oliver. When he was in the vet for surgery, he had been so nervous that he refused to eat, so they gave him Valium to calm him down. So, we tracked down the same vet (this is years later, keep in mind) and went to the clinic to see if we could get the pills without bringing the cat in. It was a big ask. Surprisingly, they let us have a few pills.

On top of all the arrangements we were having to make, our Shanghai housing was through the school and they indicated we needed to be out of the apartment by July 15th (actually we were told two dates 12th and 15th). We had expected to have more time.

There was also the delay of visa transfer. The HR on the Shanghai end was less than professional, in my opinion, and this caused us misery. Thankfully, the HR at the new school was quite professional and efficient and managed communicate with her to get things moving. We had to give over our passports to have the visa cancelled and a 30 day temporary visa, then when we arrived in Xi’an we would need to get a new long-term visa. This all meant turning in our passports at a time when we would need the passports for other things. Also, when we turned in our passports for the visa cancelation, the estimated time would be longer than the deadline for getting out of our apartment. You cannot check into a hotel without a passport. Lovely catch-22 situation created by an HR staff who couldn’t see the consequences of her actions. Happily, it worked out as we were able to pick up our passports and temporary visas on the Tuesday before we left.

One thing I was contemplating was how to get the wheelchair to Xi’an. Should it go with the furniture or with us in the van? Would it take up too much room in the van? All of this became moot. I broke the wheelchair frame. In the first year of having the chair, I have broken it three times, twice with my own strength. I was standing next to the chair. I needed to pick up something from a table on the other side of the chair. I reached over while placing my hand on the armrest of the chair and leaning on it, in order to reach the thing I wanted to pick up. I heard a loud POP! The frame had snapped. I had my Chinese assistant call the store we had purchased the chair from. At first, they said bring the chair in and they would replace the part. Later, they called back and said that the company wanted to see the chair themselves as they had not seen such a break and wanted to investigate it. So, we ended up packing the chair up in a box and shipping it off to the factory for repair. The factory then shipped it to Xi’an, so it was already there and waiting for me long before I arrived. The drama queen of a chair got its own trip to Xi’an.

The movers came to pack up our furniture and belongings on Monday. We had Tuesday and Wednesday for last minute errands, like visas and Valium. Then on Thursday, we got up at 4 am, loaded the last of our luggage, cats in carriers, and ourselves into a van to drive all day to Xi’an. There were two drivers so that they could switch off occasionally and drive straight through (1382 kilometers / 859 miles). Amusingly, they showed us how we could recline the seats and go to sleep. However, they talked LOUDLY the entire time so that even when we were drowsy and wanted to sleep, we could not. I finally resorted to my noise cancellation headphones and an audiobook to block them out. We had worried that Oliver would be loudly howling and disturbing the drivers. They didn’t even notice any noise Oliver made due to their own sound level. The driver had asked us if it would be okay if his sisters traveled with us as they had not been to Xi’an before. We said “no” and thank goodness we did, if it had meant that there would be two more people talking incessantly at the top of their voices the whole way.

• 

• 

The drive was mostly smooth and uneventful. They stopped at every restroom/gas station stop. Some were ghost towns with no one else in sight and others had a convenience store and other customers about. We arrived in Xi’an after 9:30 pm. That is when the nonsense began. The apartment compound is completely pedestrianized and our van was not allowed in. It was also considered too big to go into the underground parking area, so we had to find a way to take all our luggage from the main gate to our building, which is about a 10 minute walk. There was one flatbed trolly at the guard house we could borrow and most of our luggage had wheels. DaddyBird, one of the drivers, and our school representative who was there to greet us, took most of our belongings in multiple trips while the other driver and I stayed with the van and the cats. The driver went to take the cats out of the van and set them on the sidewalk right away and I had to stop him. No reason to have them setting there being even more traumatized than they already were.

We had had an Ikea bed delivered earlier in the week, but it was not assembled, so we unwrapped the mattress and slept on the floor. The cats were glad to be out of the carriers, but Oliver was quite nervous. He cowered under the bathroom sink for a few days.

Asian Tigers were to arrive with our furniture the next morning at 9am. The same “no truck” policy was going to make this a serious mess. Asian Tigers had contracted with some other company for the unloading of the truck. Unfortunately, they did not choose well and did not do a very good job of contract writing, it seems. The local movers tried to scam us and refused to do more than unload the truck contents onto the sidewalk at the main gate. They didn’t think it was their job to actually get the contents into our apartment. After a lot of arguing, they brought the small stuff into the apartment, but they wanted a lot of extra money for the large furniture pieces. DaddyBird was livid. This was resolved by telling them to get lost and hiring someone else who was willing to do it for 300 yuan.

Having moved into a brand new building, we experienced some inconveniences, like no internet connection and unstable electricity. The electricity went off and on several times during our first Saturday. Apparently, workers who were remodeling some other apartment only knew how to turn off the electricity for the entire building not just for the one apartment. After much complaining, that was resolved. However, there were several compound-wide electricity shut downs due to problems with the neighborhood grid. Unfortunately, they chose to do these shutdowns overnight, which for most people would be the less inconvenient time, but if you need a CPAP machine to sleep, it is a real inconvenience.

Paying utilities is all different here. The natural gas is done with a prepaid card. Electricity is prepaid through an app. Our electricity use is charged to the account daily. It is about 20 yuan per day. The water bill comes every three months with the maintenance fees.

Living in a new city has provided DaddyBird with challenges of finding what we need, exploring the neighborhood, and working out how things work differently here. My challenge has been adapting to a new job. That story is a whole other can of worms for another time.

Despite the struggle to get here, we are happy. We have a lovely, large apartment. The electricity has stabilized. We have internet connection, finally. Things are working out.

Shanghai Disney

Posted by Kanga. Please do not reblog.

Lobby of the Shanghai Disneyland Hotel

During our Christmas holiday, we were allowed to travel within China, although we would have to report any travel plans outside of Shanghai to my employer and take responsibility for any COVID-19 related issues, like avoiding high risk areas and possibly having to do a 14 day quarantine upon return. We opted to stay right in Shanghai and avoid the risks. I decided this might be the right time to go to Disneyland. We did a little stay-cation involving two nights at the main hotel and one full day at the park.

It was not cheap. We upgraded to the Club Level, which we considered worthwhile. We were met in the main lobby and escorted up to the 7th floor (Club Level) where they have the club reception area. There are 3-4 meals included and provided in the club area. (Way better than the buffet on the 1st floor – do not go to the buffet!!)

My plan had been that I would be using my electric wheelchair and I would be able to zip around the park easily. We purchased a second battery and had them both charged up and ready to go for a full day in the park. HOWEVER, the best laid plans of mice and men do not always work out. Just after checking in, as we were heading into the dining area for the afternoon snack, the right front wheel of my chair came off. The post was sheered off.

The staff were very helpful. They offered a manual wheelchair and took both our luggage and my damaged chair to our room while we sat down to eat.

I found the manual chair hard to move. It kept going to the right. The carpet doesn’t help much as it is super cushioned, which is great for the walking guests, but not so much for the rolling ones. Hotel staff decided to help push me to our room and it took two of them, as the chair was hard to steer.

The room was quite nice and thoroughly Disney-fied. Plenty of towels and plenty of complimentary water bottles. The beds were soft, which is rare in China. It was quiet and comfortable and we had a good sleep.

We went for dinner in the buffet restaurant, Lumiére’s Kitchen, on the first floor. Unless you have children and really need to see Mickey, Minnie, Goofy, and Pluto in costume, do not go there. The food was really, really bad (mushy, lukewarm, and had been on the buffet too long). The price (and we got a 20% discount) was horrifically high. Don’t do it. We suspect that kids eat for free, so maybe that and the characters is the draw, but they clearly make up for that by charging exorbitant prices for adults.

We had a fun day, despite the manual wheelchair. It was nearly killing Paul to push me around as the walkways are mostly smooth, but hilly. Lots of up and down slopes and he was having to fight the wayward chair the whole way. We were joined by friends, happily.

Jesse, Lucy, and Isolde joined us. We have this picture because it was part of the wheelchair drama. The chair that the hotel had loaned us was so awful that even with Paul and Jesse taking turns pushing me around, it was miserable. So, we went off to the guest service center near the front entrance where they rent out strollers and wheelchairs. Lucy was our interpreter and helped explain that the chair we had was not working well. We were able to trade for a slightly better one. Then we were taken to the other guest service area across the entrance and offered a pass that would allow us, as a group, to get priority access (“the short line”). The picture was necessary to show with our pass so that we could all go as a group. The catch was that you have to take the pass to a guest service booth, tell them which ride you wanted to do. They would “calculate a time” whatever that means and they would write it in the pass. Then we could go to the ride at that time or anytime after that time and get priority access. Also, you could only plan one ride at a time. This means going to a guest center between each ride and then waiting for the appointed time. We only did this once as it was just a bit of a hassle to get 5 people to decide on a ride and then go through the guest service booth process, etc. The lines were not long anyway, so it wasn’t really necessary. Paul and I had already purchased a package for priority access to the main rides. Oh, well. Live and learn. If we go again, we will know better.

In fact, the lines were so reasonable that we ended up going on all the major rides twice. I’m not a big Disney fan, as far as movies and merchandise are concerned, but they definitely know how to create amazing rides. Soaring Over the Horizon is the most popular ride in the park and it was definitely my favorite. It is a giant IMAX type movie, but they make you feel like you are flying and they make you smell the Savanah.

Back in 1968, my sister took me to the original Disneyland and I remember riding through the Pirates of the Caribbean ride with all its animatronics. The new Pirates of the Caribbean has few animatronics (sadly), but is amazing. You know you are in a “boat” that is moving through the water on a rail, but they make you think you are at the bottom of the ocean or speeding to the surface.

My memories from my first Disney experience as a five year old include It’s a Small World, Pirates of the Caribbean, the Tea Cup ride, and a ride that scared me. It was a rinky dink train ride. I am sure it was demolished long ago. The seats on the train were set to look out the left side of the train only. It passed through a tunnel and there was a dinosaur diorama displayed in front of us. I was immediately afraid of what dinosaurs might be BEHIND US!!! I shudder to think how traumatized my 5 year old self would be if exposed to the current Disney rides.

I meant to wear my heart pendant souvenir from my 1968 Disney visit during my 2020 visit, but I forgot to take it with me. I still have it, though, all these years later and the fond memories that are connected to it.

On the whole, aside from the wheelchair struggle, we had a great day. The lines were short. The staff were friendly and helpful. We shared it with friends. It was expensive, but we haven’t traveled since January and needed a little Christmas cheer this year. A big thank you to our friends for joining us. Maybe I won’t wait 52 years to visit Disney again.

Transitioning to Wheels

Posted by Kanga. Please do not reblog.

Meet my new assistant

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.

COVID-19: Summer of Sewing

Posted by Kanga. Please do not reblog.

For a while I have been hunting for specialty fabrics to make book or reading related jackets for work. It started with an Alice in Wonderland print and a comic book print. I found these in the Taiwan fabric market

While back in the states for Christmas, I found an astronomical print to represent math and science. The Marvel avengers join the line-up for more comic goodness.

This summer, as we decided not to travel, even if just within China, which would have been the only travel option, I spent the time sewing. I discovered the wonders of ordering fabric online and having it delivered to my door.

I found some funky prints to liven things up. The fun of ordering online and getting deliveries is that they sometimes come with freebies – like buttons or zippers. 

I found two pieces of traditional Chinese fabric called nankeen. So I have indulged in a bit of cultural appropriation in using these to make clothes. Nankeen is usually used as a decorative cloth for table runners and pillows. On rare occasion it is used for a qipao dress or man’s jacket. I particularly like this pattern as it shows an old China that no longer exists in urban Shanghai.

The second piece is a simple dragonfly pattern.

The ultimate project is my Book Jacket. It started with fabric with the print of pages. Add to this a lovely red wave print to emulate endpapers and a forest green with gold texturing to represent book covers. It turned into a whole ensemble with blouse and pants.

I have yet to bravely wear this wonder in public. Sometime in the winter when the weather allows for heavier clothing …

This is how I spent my COVID-19 Shelter in Place summer.

Job Hunt: Thank you, Dr. Rude

Posted by Kanga. Please do not reblog.

In November, I had to decide whether I would sign on for another contract or if I would move on at the end of the school year to something else. This is always a complex issue and it is never easy to make the commitment one way or the other 7-8 months ahead of time. We weighed all the variables and decided that it was time to move on and time to leave China. If I had known then what we know now, the decision would have been even harder. COVID-19 has made job hunting exponentially harder than it usually is.

Due to the limited number of international school librarian positions available in countries I would consider, I began looking at returning to the American academic library scene.

I am at a disadvantage for several reasons, including that I have been working abroad for 12 years and for 9 of those years have been at the high school level. Even before I left the States, I was at a disadvantage. I had worked for small, liberal arts colleges. Trying to get a job at a larger institution meant coming up against the assumption that I might be a big fish in a small pond, but I would be a small fish in their very large and important pond, again and again. So, just imagine what a small fish I appear to be now.

Surprisingly, I actually got some interviews with big/medium institutions. In fact, I made it past the initial interview for two of them. This meant traveling to the institutions for in person interviews. In person interviews in academia can take a whole day (or even multiple days) involving meeting with several groups of people and even giving a presentation or example of your work. I believe that one of the unstated purposes of these interview days is to test the candidate’s stamina. Can he/she be broken in a few hours?

My first of these in person interview days was mostly okay, but it only takes one or two terrible things to sink the candidate. And I definitely sank myself. My presentation was terrible. I knew it immediately and I take full responsibility for it. I did not take it seriously enough. I was not terrified during the preparation process. I did not do enough. I did not push myself. Therefore, I stank up the place.

The people on the search committee were polite and continued to be nice to me as the day continued after the disastrous presentation. However, the last event of the day was a meeting with the Dean of the Library. We could have saved a great deal of time if it had been the first event of the day instead of last. He confirmed that my presentation was a disaster by saying “You are a mismatch for this position. What in the job description led you to apply, because maybe we need to rewrite it.”

…

He also made a confusing comparison using his concept of the school where I am currently working and his concept of HIS school. The conclusion of this comparison was that I was incompetent. My high tuition international school which he assumes is filled with the sons and daughters of diplomats is TOTALLY different than his land grand university. I savor the paradox of a university that is so full of itself and yet has such a chip on it’s shoulder. Boo hoo, poor institution that depends on government funding. All the colleges I have worked for have been private institutions dependent on tuition and donations that received no government budget money. The only government funding they received came through financial aid to students, therefore tuition.

I am still unclear on how this economic comparison led to a negative assessment of my abilities. He did not make much sense.

However, I am thankful that Dr. Rude was so very direct and blunt, although not necessarily logical, because he told me everything I needed to know about working in his library. I would not want to work under his leadership. Several of the people I interacted with had been students at the school and “fell into” working in the library and haven’t worked anywhere else. They may not realize that having an abusive leadership is not universal or normal. The position I was applying for had been filled by at least two people in the last 6 years, which implies that the position was not long term comfortable.

I have no desire to work for bad management. I know that I don’t have to work for bad management.

Next, I had an interview at a community college. I thought it went fairly well. However, I was totally ghosted afterwards. No rejection email, not one peep out of them. It is amazingly unprofessional to interview someone in person and then not communicate, even, if it is in the negative.

I returned to Shanghai, China in early February and then the COVID-19 fun began. Countrywide self-isolation and closing of school campuses had me working from home. Then, in late March, the China borders were closed to foreigners and I began getting replies from US institutions that indicated job searches were being put on hold, so this meant shifting my job search to inside China. I had a couple of video interviews. One was a school in Beijing with a good reputation. I thought the interview went well and the principal mentioned arranging for me to speak with a teacher, so that seemed like there would be more. But then, crickets. Ghosted again. No further communication.

As time dragged on and negative result after negative result, it became fairly obvious that I needed to stay at my current position. A recent posting of said position led me to believe that the school had not been any more successful at finding a replacement than I had been at finding a new position.

It is official now. I have signed a one year contract. Only time will tell what the next job hunt season will be like, thanks to the worldwide pandemic. Luckily, we are in one of the safest places due to the effective isolation, contact tracing, testing, and treatment measures taken by the Chinese government.  We opened the school this week. Life and work is not fully normal, but it is certainly more stable than what is happening in other parts of the world.

COVID-19: What to do on your birthday

Posted by Kanga. Please do not reblog.

The day before my birthday we ventured out to a clinic where I had a follow up for breast cancer which showed zero signs of recurrence. Woo hoo! 27 months free and clear.

It was a beautiful sunny spring day. There are signs that life is getting back to normal, like the increased scooter traffic. Traffic and pedestrians are still light, but it is a step up from empty streets.

People are starting to line up at the food shops for buns or dumplings.

The gate at the clinic building was a bit chaotic with people coming to work, deliveries piled up, and the temperature check station.

Another sunny day on my birthday. We ventured out for a meal. I really wanted sushi, but since I am not sure how safe that is (how safe is it ever?) I opted for cooked food — pancakes. When we arrived at the restaurant our temperature was taken and recorded on a form with our names and phone numbers. A short time later two police persons (one male, one female) came into the restaurant and spoke with the staff. One waitress came to our table, took our temperatures again and recorded them again. I’m not sure if she thought we had been missed the first time, or what. The restaurant closed at 5 pm (abnormally early).

Blue berry pancakes – super yummy.

Our second taxi was taking some extra virus protection measures. It was not air tight by any means, but I suppose it would stop any sneezing or coughing splatter.

This is how it is done, everyone. Wear a protective face mask. For decades China has had severe air pollution with a significant mortality rate from respiratory disease, however only a small percentage ever wear masks for that. A fast spreading virus and government restrictions = masks on everyone.

The best part of the virus situation is that taxis are lined up in front of the Carrefour store. This never happens normally. It is so nice to go in, shop like crazy, and know that you can get right into a taxi with all your goods when done. This I will miss when things are fully back to normal.

Our printer has died, so we stopped in to get a new one. We nearly missed the display as there were only 3 models to choose from. However, there were nine models of fancy door locks to choose from. Also, the sales staff couldn’t be bothered to assist the only customers in the section.

The day ended with fig and pear pie. Quite tasty.

And, the perfect gift for a librarian.

COVID-19: the Continuing Saga

Posted by Kanga. Please do not reblog.

We are now coming to the end of my 5th week and DaddyBird’s 6th week in the Shanghai coronavirus experience. The schools are still closed, so I work from home. We go out once a week to meet friends and get a little socialization.

Many of the international schools have put out the call for teachers who are still abroad to come back to Shanghai to do their 2 week quarantine. There is still no official opening date for the schools from the government. The concern seems to be that if the disease is soon considered under control in China, but is only beginning to spread in the rest of the world, the borders might close and teachers would not be able to get back.

Many concerns were expressed by teachers abroad, especially those with children. They wanted to know as many details as possible about the process of return and what will happen. The health check at the airport is more stringent now. Anyone with symptoms would have to go into official quarantine. Those who have traveled in countries with high chance of infection will quarantine at home under some supervision. All others can quarantine at home with few restrictions.

More restaurants are opening. Museums and parks are opening. Corporations have called their workers back to work. Things are getting back to normal slowly.

Two weeks ago, this is what it looked like at Starbucks. The chairs were all arranged to keep individuals apart and not facing each other. There were signs with instructions on how to behave and to not rearrange the furniture. (It didn’t keep people from doing just that, however, as a couple came in and rearranged the chairs so they could sit and talk face to face.)

Whiling away the hours has included jigsaw puzzles, some plastic block constructions, and coloring.

Even some Dungeons and Dragons, for socialization.

A trip on the metro two weeks ago looked like this.

The taxi line outside the major grocery/department store looked like this.

Normally, there are no taxis and you have to wait a long, long time to get one.

Our lives revolve around food.

As of this week, Laowai Jie (Foreigner Street) still looked like this on a Sunday afternoon.

We may be going out more often, but it is likely to be several more weeks of working from home.

COVID-19 : Living in Shanghai

Posted by Kanga. Please do not reblog.

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.