Lindsey, newsletter #18
Seoul, Monday 1st of August, 13-00
What a coincidence! They were selling books (in Korean, so not very helpful) and jigsaw puzzles in the main hall of the hospital this morning. So I went for a 150 pieces picture of Plaza de España with fireworks.
It will take a while but it is helping, I think. At least to recover confidence with a non trivial cognitive task in which language is not the key issue.
The night was better and there is clearly more energy.
Love
Lindsey, newsletter #19
Seoul, Tuesday 2nd of August, 19-00
Little by little. One step at the time…
Today has been an exhausting day. Not necessarily for Lindsey who is recovering, albeit slowly.
But it has been about preparing the trip back. The French Insurance company has decided to send over from Paris a doctor and a nurse. They get here tomorrow and on Friday we are all flying back. Air France, business class (not for Vikki for who we had to buy an extra ticket). Then, once in Paris we have an ambulance and a car waiting for us which will bring us to France.
When reading this you cannot fail to be impressed by the professionalism. But that is because you are looking at the result. Before reaching it we have been through frustrating times where clearly the documents produced by the hospital were not reaching the French decision makers. So it was very much about getting information directly from the nurses and passing it directly to Paris.
Obviously, this is not the most important issue: it’s not about getting angry or regretting that incompetence adds an extra burden of stress. It’s just that one expects much more professionalism than what we have seen so far. And to be quite fair, is is clear to me that the problem is not at the Korean end.
Anyhow, Lindsey is resting, having small walks, hating the puzzle, has been able to go outside and breathe some fresh air. But she is gloomy and grumpy, obviously fed up with the four walls of her room and having to deal with the frustration of not really being able to express herself.
All happy news from people gives a chance to cheer her up, as does the perspective of being « home » in a few days.
Love
Lindsey, newsletter #20
Seoul, Wednesday 3rd of August, 21-00
At 9 30 this morning Fidèle and Maurice arrived (names changed). Straight from the Paris plane. They entered the room with a small Korean guy who was not even presented to us.
Maurice is the Doctor and Fidèle is the nurse. A rather large nurse.
Both nice and competent. It was rapidly agreed that I had a number of things to do until they met us again….
…on Friday morning. I failed to understand what they had to do till then.
I suggested that we discussed together with the nurses some of the items on the list (I am starting to understand that things are never straightforward).
To our great surprise the chief nurse turned to the Korean chauffeur and they started talking, consulting the smartphone from time to time, and clearly making decisions.
I was actually amused at seeing the irritation of the French medics at first and then their embarrassment when they understood that the chauffeur was actually the
representative of the Korean agency which has been (mis)handling the insurance company’s representation since the beginning.
As our man spoke very good English I was at least able to say that having been in a difficult situation during more than 15 days, it was strange to only meet him today.
The fun continued when the nurse told me that I was to go to some special place on Friday at 5 am to pay the bills (and we are talking of millions of Wons).
I did make a little fuss until our Korean friend said that it was up to his agency to pay. I felt we were at a pub arguing about who should pay the next round…
Lindsey has been much better today but is also much more difficult to handle. Procrastination has become her key idea. Even if it is agreed by all that she should not
spend all her time in bed she seems to be getting there as soon as she can and is then very difficult to move… Of course, it is very difficult to blame her but it
is impossible not to argue.
Love
Lindsey, newsletter #21
Seoul, Thursday 4th of August, 10-30
Possibly a last entry from Seoul…
We are flying back tomorrow Friday after more than 3 weeks in Korea. I don’t think I have ever spent so long in a country and seen so little.
But I did get to see the Severance hospital, visit the different corners of it. It is so huge I obviously didn’t see it all.
Even this morning I discovered, with Vikki and Lindsey an indoor tropical garden with some fantastic orchids.
Lindsey was too tired to enjoy them… we had been woken at 4-45 for a head scan. The last, needed to get the go ahead for the flying.
As we are about to leave, here are some of the things that stroke me, that I will remember, that just will seem unreal later.
On the very first night, when the bad news were pouring in, while I was signing authorisations to spend with numbers in the dozens of millions of wons (I just stopped converting, I just signed), I had to try to get hold of wifi to contact the French Insurance company. The only place I found with open wifi was the Starbuck’s next door, open all night as it was situated in the entrance parlour to the funeral parlour. It didn’t cheer me up.
Another spooky place is the Japanese restaurant on the third floor. In favour of the place is the fact that their sushi and Californian rolls are very nice and even more importantly that it seems to be the only place in the whole hospital where I managed to find a beer. The price to pay was a bit high. Oh, not the money! But the fact that it was situated right under the MRI machine of the 4th floor. Which means that from time to time you are eating your teriyaki while hearing the thud-thud-thud sound of the MRI above your head or the bip-bip of the scanner…
The third spooky element is not a place, but a coincidence. For the past 6 months I have been working in Kyoto on « Learning is about intelligent forgetting » where I try to prove that it is our forgetting abilities (and the machine’s) which allow learning and therefore access to intelligence (If you want to have a look, a draft is here… I even accept opinions as it is still to be polished and published; it is supposed to be widely understandable). So I have been giving forgetting a lot of theoretical thought since January. It is so strange that Lindsey is presenting a practical case just now.
Lindsey is still very tired. But more than anything, she is fed up. And even Vikki’s energy is failing to get morale up.
Getting back is going to help.
Love
Lindsey, newsletter #22
Seoul, Friday 5th of August, 7-00
Still in Seoul.
Unfortunately, Lindsey’s condition has not allowed her to be up to a 12 hour flight with no reasonable landing points on the way.
So last night at 9 pm it was decided to postpone her return. And ours.
Just for the record…
Lindsey had spent a rather pathetic day. Not wanting to do anything, only half awake and with her eyes shut most of the time.
The most energetic moment was getting her into the shower and trying on the travelling clothes.
At 5pm I received an email from Professor Chang which made me uncomfortable: some treatment was to be restarted and it was to be seen how this
treatment could be continued during the flight. But he was still suggesting that she should fly.
It took me a while to get hold of the French medical team. They arrived around 7pm and as soon as the Doctor read the email he said that it was
out of the question that she should fly. I then had to get hold of Professor Chang who was in surgery and only left the operating room at 9.
So I managed to get in the same room (Lindsey’s) Doctor M. and Professor Chang. There were a total of 9 of us as Professor Chang arrived with his assistants.
Doctor M. asked me to do the translations. And then began a surreal situation where Professor Chang argued that she was OK to fly and that the risk was
counterbalanced by the benefits of getting back to France now. But Doctor M. decided to follow rules and not allow her to fly (because if things went wrong
during the flight it would have been his responsibility).
Just so that you can picture the scene, the (heated) discussion took place around the bed, with me acting as a interpreter.
Doctor Chang rapidly gave in (because he couldn’t win the argument… ) and it was decided that Lindsey stays here until able to travel.
What was really frustrating was to see that they disagreed on non trivial medical issues : Dr M. argued that anyhow, with the oedema,
Lindsey would not be able to go through radiations, but Pr. Chang said this was false; and Professor Chang said that starting the
treatment in one place and continuing in another was not a good idea whereas Dr M. said all this was standard…
To be fair, the final decision is possibly the best one, but it just represents a huge disappointment with many new complications attached to it.
And we have had to start to deal with several of these (cancelling Vikki’s ticket, rebooking hotel, etc). Luckily we have Boris at a distance taking
charge of many of these things even if the stress for him must be just as bad.
Things will improve, but right now I am feeling like the guy in some war movie who has been resisting with a small platoon under constant
bombing and just finds out that the rescue team will not come for some time.
I woke at 4am and checked my mail. Professor Chang had answered a few minutes before to the mail I had written a few hours before and
was starting to discuss directly with the Nantes doctors. This is great news because the top priority is Lindsey recovering but the second top
is to ensure a smooth transition between Seoul and Nantes.
Lindsey has spent a quiet night but is not really with us.
Aha… I just asked if she wanted a coffee and she said yes. So there is hope.
8-30 update. Vikki arrived at 7-30 and injected new energy into the room. Lindsey has had breakfast and doctors have promised to remain vigilant.
Love
Lindsey, newsletter #23
Seoul, Saturday 6th of August, 7-30, updated 10-30
A very quick update for those who are staying up to see the Olympics. 8pm in Brazil is 9am in Seoul.
Lindsey improving very rapidly thanks to the drug which is used to reabsorb the oedema.
Able to walk and even talk much more. Now the issue is probably to get her slowly off the drug without letting the oedema get back.
Night was shortened a couple of times.
At 4-30 for the scan.
Before that, at midnight, the phone rang: I knew who it would be and regretted immediately having given them the phone number of the room: the French Insurance company… « Hello Monsieur de la Higuera, I am ringing to find out how you are. We have been advised to do so by the doctors who visited you. But perhaps this time is inconvenient? »
I said it was. Complete idiots. How can they phone a hospital room at midnight? If they were in charge of a pizza delivery service their business would go bankrupt in a fortnight.
At 10 we received the visit from the top person from the international health service, who confirmed my impression.
I am seeing professor Chang later this morning and see what the strategy is to be following the results of the scan.
love
Lindsey, newsletter #24
Seoul, Sunday 7th of August, 9-30
Lindsey is much stronger, much better, much more alert.
Yesterday’s scan showed a great improvement.
This morning, Lindsey felt secure enough to have a shower on her own. This made me get told off by the nurse.
The difficulty now is still that the French and Korean do not agree, and they are still not speaking to each other.
Or rather, Seoul and Nantes are speaking, but the French assistance agency is not. And it can only start from them as there is just never the actual name of a doctor on the French side…
I spent most of the afternoon on the phone trying to convince them, then back on the mail attempting to get hold of the different results… So much time is wasted because the right information is never in the right place.
We are hoping that things get unblocked rapidly and we are able to fly at the beginning of the week.
Love
Lindsey, newsletter #25
Seoul, Monday 8th of August, 13-45
Lindsey better at most times. Ups and downs. There is progress, just very slow.
And frustration is really becoming an important factor. Getting back home would help so much…
But this is just not possible: the French doctors are against the transfer.
I am not sure who is angriest, Chang or me. But as there is nothing we can do, we just wait, with Prof. Chang doing his best for Lindsey to be in the conditions the
French medics require, and Vikki and I doing our best to cheer up Lindsey.
Sunday (yesterday) in a hospital is very special. Very quiet, with much less movement. Time seems to go even slower. We spent the day resting, eating, doing a bit of exercise,
watching Olympics.
Olympics: as they always happen in August, I think we have seen them in many countries: in Turkey, Britain, France, Spain and even Cameroon. And there is one constant:
the « Olympic spirit of friendship » disappears 5 minutes after the opening ceremony, and then it’s all about nationalistic pride. Which means endless repetitions of the heroes
from the national team and a prejudice towards some sports rather than others.
In Korea, this means that we are being overfed archery. We didn’t know the rules, how the points were counted, how you decide where an arrow on the line is… Well. Now we know.
Love
Lindsey, newsletter #26
Seoul, Tuesday 9th of August, 09-30 updated 14-30, 20-15, 23-30
20-15–> We have been told Lindsey was in the « recovery room » and should be with us in less than an hour!
23-30–> Lindsey back in her bed. She is resting. Very muddled but « with us ». She is not sleeping and I have been asked to get her to take deep breaths from time to time. I am not sure how this is compatible with sleep…
But the important thing is that she is here and seemingly better. it was too late for the surgeon to come tonight, so we will be seeing him tomorrow.
Another complicated day started a few hours ago. Lindsey is to undergo surgery this afternoon.
Yesterday evening Professor Chang came and we looked together at the results of the afternoon scan. There are some problems linked with the evacuation of fluid from the brain. To solve this he needs to put a subcutaneous drain. The operation is « simple » with minimal risks. A couple of hours.
So right now, Lindsey is resting. She is not allowed drink nor food till the operation so the long hours up to the operation are going to be hard.
Again, the fact that she is strong and that Professor Chang is in charge are the positive elements here.
I will update this when we get good news. I don’t know when that will be: she is due for surgery at 5 pm Seoul time.
Love
Lindsey, newsletter #27
Seoul, Wednesday 10th of August, 17-30
20 hours have passed since the operation. Lindsey recovering very rapidly.
We were so impressed that we brought her for a walk 12 hours after… and got told that she should not move out of bed for 24 hours. To be fair, we had only gone walkabout because we had been told we could.
The night, as expected, was sleepless. Nurses and doctors came in and out, checking one or another of the tubes, asking her questions… At around 2 in the morning one doctor told me why I had not been able to see Professor Chang yesterday: he was still in the operating room.
We saw him this morning and he was happy with the operation and the results. But it is of course too early to know for sure. We are now working on a tentative return to France at the beginning of next week.
Of course, for that, the French insurance company has to agree, and we are clearly in a complicated situation where communication and trust between the two parties does not exist. I am not sure how to deal with this.
I did spend my morning dealing with the petition by another insurance company who has asked for a copy of each page of our passports. I am 200% sure this has no medical importance whatsoever…
Love
Lindsey, newsletter #28
Seoul, Thursday 11th of August, 10-30
Lindsey is resting. She was very alert last night. When it was time to turn the light off she clearly was more awake than I was.
This morning she was tired. The doctors seem to feel that is normal, that intracranial blood pressure is always higher in the morning than in the evening. So when she is more punchy, later on today, I will update the blog.
Sorry to use the blog to shout out my frustration at the gross ineptitude of the French insurance company, but…
I decided to phone them yesterday afternoon and explain that I needed from them « a plan », to know what schedule they were working on and what they required to bring us back. I wasn’t able to get a doctor so the rest went by email.
Here are my translations of the exchanges.
IMA doctor: Good evening,
The medical team from Nantes considers that the end of the Mannitol withdrawal might be the decision point for flying you back.
Me: […] As indicated by phone today I would like to know what you call exactly « withdrawal »: is this the end of the intake of Mannitol or is there a period between this end and what you call the end of the withdrawal?
IMA doctor: Good evening from France
I am getting back to you following your petition for a very legitimate medical translation. We do have a bad tendency to use medical terms.
Withdrawal is an attempt to halt a medicine or oxygen during which one observes the absence or the reappearance of signs.
I hope we have answered to your request. Please don’t hesitate to get back to us again if need.
Well, no, that was not what I was asking. I can search for withdrawal (« sevrage » in French) on the web. What I wanted were durations and an explicit answer. Not this b…t.
I am not copying my answer.
Love
Lindsey, newsletter #28
Seoul, Friday 12th of August, 18-30
Better. Definitely better.
Oh, we did have our stressful moment of the day (life would be so boring without at least one of these each day): breathing problems, coughing… the nurse pronounced the nasty word of the day (pneumonia) and we were back in worryland. A medical check and even a chest scan helped to feel better about it.
You would think that after 3 weeks of hospital we would have become fatalistic… But no, as time goes past, everything seems to be motive of hope or worry, usually both at the same time.
Lindsey woke early. 5 am. Lindsey waking means immediately lots to do. Open curtains, change positions, pick up, coffee, bathroom, etc… And even with Vikki’s help it is not easy to find the time to sit down and blog.
As far as future goes, we don’t really know. Tuesday’s operation has resulted in air having been reintroduced in the skull. And while there is air it is out of the question to fly.
We are approaching a long week-end, as Monday is holiday here (not quite sure why), and we will probably not know more about dates till then.
Another boring Korean week-end ahead of us.
Love
Lindsey, newsletter #29
Seoul, Saturday 13th of August, 9-20
Things are looking brighter!
Most importantly, Lindsey is a lot better. Able to walk, to discus, to get around. She is also much more combative: she wants to do things on her own. It doesn’t mean she can. But it means that she tries. This is great even if it is introduces other complex issues: for instance it means I have to be alert all night in order to be there « just in case » when she want to go to the bathroom (every couple of hours due to the diuretics).
The morning fright was a swollen arm. No new medicine so it is unclear what that could have been.
Around 8 pm last night Professor Chang entered the room and told us that there was no air left in the brain and that Lindsey was therefore able to fly to France safely. He had just sent an email to the insurance company and the Doctors in Nantes explaining things.
Boris followed up with a phone call to the insurance company (I have decided that it would be better to get a better negotiator here as my nickname with them was certainly « patate chaude », or the hot potato… that nobody wants and passes to the next team… They have interesting tactics for this: if someone has a 6 hour shift and one of the cases he has is ours, he makes he does nothing about it till 5hours and 50 minutes have elapsed and only then does he send an email with whatever decision had to have been taken 6 hours ago. This, not just to waste time but more importantly so that it is the next shift who has to deal with the answer.).
Anyhow, at midnight the nurses came to fetch me. They were trying to understand what this doctor was asking (and were also worried if it was OK to give him the information he was wanting). This was medical information I provided with the help of the nurses. The good news is that he told us that they were working on getting us back on Tuesday. He even indicating that this time they were looking for a complete solution, one in which Vikki is brought back to.
Of course, at 8-23 this morning I got an email from them giving me the time (but not the date) of the flight and where Vikki is no longer mentioned, so it’s back to getting someone on the phone…
Love
Lindsey, newsletter #29
Seoul, Sunday 14th of August, 10-20
More positive news. We are now talking about the bad moments of the day rather than the good moments. This may seem cryptic, but it means that Lindsey is better most of the time.
The new French medical team visited this morning. Much less « cowboys » that the last one. They even checked Lindsey up, made her do a number of tests. Which she seems to have passed.
The other good news is that the logistics seem to work and we should all be on the same flight on Tuesday.
All this is positive enough for me to go off and visit a temple or two in Seoul.
Love
Lindsey, newsletter #30
Seoul, Monday 15th of August, 12-20
We all believe this is going to be our last day in Seoul.
So there is a certain number of activity, getting Lindsey as ready as possible, getting hold of as much medical information we can -it may be more difficult to do this from France-, getting our stuff from the hotel to the hospital,…
Yesterday, things were so quiet that I felt capable of going out and took a bus into Seoul to visit the palace (GyeongBokGung), walk around town, get lost, end up in a shopping street where I started using some of the wons we still have.
Lindsey steadily better. There are the wrong moments of course, but perhaps less and less of these.
This morning we have had our visitor. Jung Hyun Joo has been of great help. A friend of Julie’s, she has popped into see us various times. Bright and cheerful. The only problem has been that I have wanted to know much more about Korea, their relationship with the North, and many aspects of Korea that I tend to bring the conversation to these aspects rather than those which would be more suitable for a hospital room.
Jung Hyun has also got Vikki to visit town the other day, and I believe it is her brother who will show Vikki around today.
In less than 12 hours we will be flying over Russia.
Love
Lindsey, newsletter #31
Seoul, Tuesday 16th of August, 05-00 (San Roque)
Ready to leave!
Lindsey, newsletter # 32
Outside Paris, Tuesday 16th of August, 1500. Still San Roque.
We made it back to France. Now on our way to Nantes. The flight was long but nicely uneventful.
Love
Lindsey, newsletter # 33
Nantes, Tuesday 16th of August, 2330. Still San Roque. The longest San Roque ever… We woke up 26 hours ago now.
We made it at last. Lindsey got here tired but glad. And waiting for us was Boris.
Lindsey is now at the Hospital in Nantes, at least in observation, but also in order to decide the next move.
Love
Lindsey, newsletter # 34
Nantes, Wednesday 17th of August, 20-00.
Lindsey getting stronger. Her moral is higher, she is participating to conversations (in all three languages). And she is even enjoying (enormously) her food. After the high standards of the Seoul hospital, we were supposing she was going to hate the food here, but… not at all.
Today, she had many visits. Not just Vikki, Boris and I, but also Luisa and Jose, from Alicante, Spain.
They are great friends with who we have sailed in Turkey, been to the Krueger, cycled and barged in the Netherlands, and had a number of adventures. It was great to see Lindsey really happy, chatty, joking.
The next goal of course is to get her back home. This is calling for some special negotiations but we are doing well.
It should be possible before the week-end.
Ah. And I should now stop this blog. Or perhaps not update it in a daily way. More so to say that we are getting out of the urgency mode which will have lasted nearly a month.
Love
Lindsey, newsletter # 35
Nantes, Thursday 18th of August, 20-00.
Getting better but a long way still to go.
The rules in a French hospital are very different from those in Seoul:
- first, they had to check that Lindsey was not bringing back some bug. Actually, this is not about the « normal » bugs; what they are very scared about are the super bugs you catch now a day in a hospital… those which are supposed to then resist to most antibiotics. This meant that he was not allowed out of her room for a couple of days.
- second, whereas in Seoul a member of the family had to be with her all the time (and meant that Lindsey’s hospital room was my hotel room), here, there are strict visiting times: 12 to 8. I am not sure which is best.
I actually got called earlier and had to go to the hospital at 11 to go with Lindsey to meet the people who were organising the treatment. This did not boost Lindsey’s morale… Then a headache followed, and she felt tired… When the next team arrived (Luisa and Boris) I was completely defeated. I left the hospital to go and do paperwork and within an hour received a cheerful message from Boris saying that Lindsey was in great shape, chatty, walking, etc…
This is not the first time where I notice the important part morale is playing and going to play. I realize that having other people coming in to cheer Lindsey up, to make her find all this worthwhile and even fun is going to be very important [please take this as an open invitation].
We are waiting for the RMI queue to allow Lindsey to be examined, and then be sent back home.
Love
Lindsey, newsletter # 36
Nantes, Friday 19th of August, 13-00.
No comment.
Lindsey, newsletter # 37
Nantes, Sunday 21st of August, 13-00.
We have now spent 2 days at home and the differences are clear. We have now to stop Lindsey who is wanting to do (too many things) things. She wants to walk around, to clean up, to make a cup of tea… She is now in the kitchen acting as a consultant to Jill…
We have been able to get out. First (on Saturday) up and down the street (Lindsey says « the Paté de Maison »).
Today, we went to the park. Lindsey still walks slowly but for those who have been seeing her for the last month this is much stronger, with less feet dragging.
Food-wise the challenge is of course tremendous as we have to attempt to match the quality of the Severance, and even the hospital in Nantes was providing some very acceptable meals.
So we have been doing our best. We have spent a lot of time shopping and are taking turns in the kitchen. The menu has included fresh crab, sole, steak, soups and fruit. Each meal has to be a 3 course one. This is not just about pleasure of course… we really want to get back some of the kilos lost in hospital.
What a difference from Seoul! In Seoul we just had one visitor: Jung. All the more merit of course, and what she achieved single handedly was just enormous.
In Nantes we have had the arrival of Boris, then of Jill. We had Jose and Luisa till Friday. And today Jacques and Ulli, from Grenoble, and who had been spending their holiday on the island of Yeu.
Visitors are better than many medicines. They help a lot to boost up the levels of energy.
Love
Lindsey, newsletter # 38
Nantes, Wednesday 24th of August, 10-00.
We are now entering an age of routine. The moments of stress are much less frequent. It’s really about organising ourselves to face the months to come.
Lindsey is improving each day. She can climb the stairs and has the strength to walk around. We would be doing more walking if the weather wasn’t so hot! Of course, we are being very careful, but things are definitely getting better.
Short term memory, which was one of my key concerns until recently, is recovering nicely also. She will remember what she has done a few minutes or a few hours ago. I know this will seem strange, but in Korea Lindsey would not remember what fruit she had eaten even a minute before.
Long term memory is also getting stronger. There are missing patches, but also some very positive news. We are back to normal in the house: I can ask her “where is…?” as I have done for the past 30 years and Lindsey will remember where she put the skewers (this was the barbecue example from yesterday). Again, memory is a strange thing. Sometimes just the word has been forgotten, sometimes it’s the actual concept. This also was very perturbing in Korea. Inevitably, the first question a nurse would ask Lindsey in the morning would be “what is your name?”. And if they kept asking this question it’s because more often than not, the answer was “I don’t know”.
Lindsey is going through a number of exams preparing for the treatment which is to start on the 1st of September. I am unimpressed with the organisation. Each time, we are asked to arrive at a given hour and end up in a depressing waiting room for more than half an hour. Morale, morale, morale…
Love