Mois : août 2018

Lindsey, newsletter # 62
Nantes, Sunday 1st of January, 10-00.

Happy New Year! At last… 2017.

A party put an end to our annus horribilis.

But before it ended we had to have one last bad news. Our friend Jean Vrignaud died two days after Christmas.

Jean and his wife Nadine lived in Bouin, on the coast and one hour away from us. Jean was a sailor and a carpenter. We shared some sailing and some fishing with him and Nadine over the past few years. They had embarked, three years ago, on a fantastic project: they had bought a boat, or rather a hull, in Oregon. Their goal was to put it back into shape and then sail it down past the North-American Pacific coast to winter in Mexico, then cross via the Panama canal to the Atlantic and then keep on sailing around Saint-Barthélemy.

They were therefore sharing their time between working in France to make the money they needed, and working on the river Columbia where the boat was. We saw the photographs showing how, little by little, Jean’s craftsmanship produced a beautiful inside and a seaworthy outside. But there was one weak point: the engine. Twice they had tried to get out of the river, but twice the engine failed on them so they had to postpone: sail back to the pontoon and work on the engine.

This year Jean was diagnosed cancer. We saw Jean and Nadine over the autumn a couple of times and it was of course logical to feel that we were sharing a common battle. Lindsey was therefore very shaken, on Tuesday, to find out that her teammate had lost his own struggle.

We went to Bouin on the next day (28th) to see Nadine. Lindsey wasn’t strong enough, emotionally, to go to the funeral which took place in the massive and intimidating church of Bouin on Friday. Vikki made the trip with me, through heavy fog.

By then we had reached the Château.

One of the goals I had set when in Korea was to have a big Christmas party to which many would be able to join. Christmas itself proved too difficult so we chose these dates, found somewhere large enough to host the more than 20 that were expected.

So on Wednesday, in the Château de la Bergelière, in the middle of the village of La Flocelière, we all met up. Lindsey, Boris, Vikki and I were joined by Jill, Georgie, Archie, Harry, Julie, Ian, Brook and Alfie from England, Susi, Ramon, Aitana and Mateo from Spain, Lali, Luis, Corinne, Robin, Diego and Charlene from France…

What a crowd! Luckily this Château had many rooms, a large dining room, a huge kitchen and a fire to recover from the very cold weather. This meant that Lindsey has been looked after by many more than usual. She seemed to be holding court, laying in her bed or in an armchair, with 4 or 5 attendants seeking to please her. All this is of course tiring for her. But the comfort offered to her is of course more important.

One year ago (only!) we were discovering Kyoto, cycling from our home in Takeda, struggling to understand what was contained in the very strange bags and boxes in the supermarket. By this time we had already prayed in temples and shrines, beaten the Mochi, and explored our world. It is of course so difficult to grasp how things could have changed so much, so fast.

So 2016 has certainly been a strange year. I called it annus horribilis at the start of this post. But the term wouldn’t tell the whole story. At many moments it has been an annus mirabilis: there was so much happiness in Japan, and even since we are back, the shows of affection, of love, which we have received can of course not outweigh the illness and the worry. But they also are part of our 2016.

Love

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Lindsey, newsletter # 63
La Flocelière, Monday 2nd of January, 10-00… but put online Saturday 6th 19-00

This post was to contain pictures from the massive 31st we held in our Château… I am still hoping for more pictures and will keep adding them. I have even added a movie filmed by Ian’s drone which gives an idea of the place we were in.

It was suggested that Downton Abbey should be the theme for the 31st. This was to fit the scenery: the Château. So some effort was done to produce the proper costumes. Sadly Lindsey wasn’t able to be with us until 23h45 where we brought her down to toast the new year.

Lindsey was actually in good shape. The main problem seems to have to do with audition: everything seems very loud to her, so of course, a dining room with more than 20 persons seems too much.

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Lindsey, newsletter # 64
Nantes, Friday 6th of January, 20-00

2 done, 3 to go.

On Wednesday we saw the oncologist. As expected she saw Lindsey as much stronger. There was therefore no other option than that of starting the next round of treatment. So yesterday she had her pills of chimio. This goes for 5 days.

We all know that it is going to be exhausting.

Yesterday all went well. Lindsey had Melissandre with her all afternoon (mental note… we want a picture of Lindsey with Melissandre) so she was again reboosted.

Today went well also, but it was clearly harder in the evening.

2 done, 3 to go.

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Lindsey, newsletter # 65
Nantes, Sunday 15th of January, 20-00

Time flies…

The 5 days of the treatment went past, with a reasonable amount of peace.

The following days have been very reasonable: Lindsey wakes up very well and is now going down for breakfast. Then, some days she is very active doing some cleaning, sorting out; some days she just relaxes watching « game of thrones »; some days she goes back to bed.

Afternoon will start with a sleep if there hasn’t been one in the morning. On Tuesday and Thursday Mélissandre comes to look after Lindsey. Both seem to get on very well together. Mélissandre is very young, very quiet, very sweet.

On Friday and Saturday we managed to have a long walk, to Cambronne’s and back, profiting from the sun rays you can get early in the afternoon.

The visitor of the week has been Luisa. Luisa is Luisa’s daughter. From Alicante.

Letters and flowers arrived.

Routine it is. But sometimes routine can be nice. For the first time since the summer, I feel that routine is nice.

Love

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Lindsey, newsletter # 66
Nantes, Monday 23rd of January, 23-00

The week went by with few novelties. We have now got the administration in control: most of the issues are now well understood. We still have to deal with the insurances which were so unhelpful in Korea… That will take time.

Lindsey is more and more active. The very cold weather of the past few days hasn’t allowed us to go out much, but we have been able to reach Cambronne’s tomb a couple of times. When we go, we usually bring a flower or two… Someone may be wondering who is depositing these flowers…

Lindsey is being able to concentrate more and more. She will be able to watch an entire film. We have also started playing again. For the moment it’s dominoes. No major mistakes are made even if there is a lot of stress! She will play with anyone available. I think she has beaten everyone but Mélissandre. For some reason Lindsey always seems to play into Mélissandre’s hand, and therefore loses.

Vikki has flown off to Morocco. So Boris has come instead to spend a week. I am hoping he will help to sort things out. We just seem to be collecting stuff. From time to time I attempt to pick things up but I end up desperate in front of the amount of things hoarded, over the past few months or before.

I even think that some of the guests over the past few weeks have decided to forget things in order to confuse us even more!

I still have several pictures from last month to publish. These are the ones I took on new year’s day. Frost and fog made a very strange mixture!

Love

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Lindsey, newsletter # 67
Nantes, Sunday 29th of January, 22-15. (Actually, this is written in Font-Romeu…)

And another week. Again, « no news is good news ». Progress is steady. Each day a bit better than the previous one.

Luis and Corinne arrived yesterday and were very impressed with the difference when comparing with less than a month ago.

I have been able to diminish the quantity of cortisone, and keep Lindsey in a comfort zone without over doing the pain killers. There still are speech issues and Lindsey needs a lot of sleep, but things are much better.

This is allowing Lindsey to do each day more. After some games of dominoes, she moved on to Carcassonne. Carcassonne is much more complex (more options, more strategy) so it was a very interesting test. As can be seen from the picture… Not bad.

On Saturday morning we managed to go to the market. At some point between the fish and the meat, Lindsey was too tired (the market, on a Saturday morning, can be very busy). So it was proposed that she waited outside the market with Boris while I was buying the duck (the duck would deserve a post entry in its own right… We celebrated the Chinese new year with roast Pekin duck, or canard laqué in French).

So when I finished with the meat I went out, only to find Lindsey trying on coats. The woman convinced her that the Italian style required wearing them large. I was of a different opinion but Lindsey was delighted with her new coat, as you can see in a picture.

I took the risk of moving about… To Oxford for one night (Thursday) and now to the Pyrenees for 2 nights. Promises and obligations. But being away is hard.

Love

Lindsey, newsletter # 55
Nantes, Sunday 4th of December, 16-00.

Going back a few days…

Thursday 1st. Pinch punch… we started the change of medicine the « pain » doctor recommended yesterday. This involved replacing codeine by morphine. It sounds bad but the idea is that Lindsey needs some pain-killers and codeine is a tricky one: if I decide not to give it to her when the « turn » comes, and pain appears, I don’t have the possibility of giving her anything else. Hence moving from codeine to morphine, for equivalent pain-killing effect.

But 10 minutes after being given the morphine Lindsey was out. It could have been linked with something else so we waited. The day was rather pathetic with very little activity. But, not having been given any specific instruction, we continued the treatment.

On Friday morning things were the same. I phoned up the pain doctor who, it seemed to me very casually, said that Lindsey was not tolerating so I should go back to the codeine and the body would need 48 hours to eliminate the morphine.

Saturday has seen Lindsey recovering a little. But the whole thing has infuriated me: I can’t understand why we are playing « test and see »… trying one medication, not telling me what to expect, then say « perhaps not ». I thought we were in the era of big data… that Lindsey’s Genome had been computed (oh… that was in Korea, not here), and somehow the treatment is supposed to be adapted to each patient.

All this seems very amateurish to me…

Love

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Lindsey, newsletter # 56
Nantes, Tuesday 7th of December, 23-30.

Exhausting…

We have just come out of a 7 day tunnel. Perhaps is it too early to be optimistic, but this has been the first nice day since…

The key word has been « oversensitive ». To noise, to the light, to touch. Which obviously incurs pain. And it has been very difficult to deal with this, especially with the sort of help -sic- the doctors have been giving.

Then today, slowly, things have started getting better. No real pain, a will to get moving, appetite returning.

I was working but heard that a Christmas tree expedition was organized and Lindsey was part of it.

So let us hope tomorrow is even better.

Love

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Lindsey, newsletter # 57

Nantes, Sunday 11th of December, 19-00.

There are some days where writing this blog is more complicated than others.

Not that Lindsey’s condition has suddenly got worse. It has actually just remained very much the same. No real progress. Some nice moments and many frustrating ones. The hope each night that tomorrow will be better. But not the feeling that we are getting anywhere.

At one point this week we tried to ask the physiotherapist to attempt a massage. But the result was disappointing. More pain than before. Corinne (Luis’ wife) believes that he didn’t do the right movements and that in Lindsey’s case only very light massages should be tried.

We put up the Christmas tree, with Boris’ help. We intend to spend Christmas here, « the four of us ». Then we will join many Foulds and de la Higuera in a Château 100 km away.

Just to change topics, I mentioned in an earlier post that I gave a talk in Nancy (500km away from here), through a robot. I was sent the movie so if you are interested, here you will find:

• The moment I am introduced… I then move around the stage before talking. A bit later I got an email from the room telling me they couldn’t see my chin!
• A bit later I get to talk again, and I move.

I would be happy to give a real lecture through the robot one day.

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Lindsey, newsletter # 58
Nantes, Sunday 18th of December, 22-00.

A lovely evening to end a very frustrating week.

The week didn’t go well. Some days, Lindsey spent 22 hours out of 24 in bed. She has very little strength, no stamina. No « ganas ».

Of course, we tried everything either just to make her comfortable or to get her thinking positive.

We were 3 this week. Vikki, Lali (Madeleine) and I.

Relation with the Cancer unit was bad. I got advised last week that if in trouble I should call the medical urgency hotline. When I argued that they would be of little help to us because they didn’t know the case the argument was that the issue wasn’t about being of use to the sick person. The issue was being useful to them as they would like that be well informed. This I decided to take personally: I thought I was informing them with as much care as possible, but visibly it wasn’t enough.

Today, my mother, Lali, had probably a very sad moment. She was leaving but hardly able to get any words out of Lindsey. Things seemed gloomy.

While Vikki was bringing Lali to her blablacar rendez-vous (I was impressed… very brave of her), I convinced Lindsey that it was time to react and a shower was needed. I strangely was successful. The shower then led to being hungry. Being hungry to going downstairs where Lindsey stayed for a while after her lunch. A sleep after lunch and I convinced her again. This time to see a (bad) rugby match. The rugby match ended and Lindsey went up to bed… not without promising that she would be back down again for the duck.

Ah. The duck. Stuffing contained what I found in the kitchen… onion, échalotte, greek yoghurt, mushroom… and a pear.

But Lindsey did come back down, enjoyed her meal, and we enjoyed her company.

Love

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Lindsey, newsletter # 59
Nantes, Monday 19th of December, 22-00.

For those of you who knew that we were going in to the hospital for a complicated meeting, an MRI, let me just say that it all went well. The MRI showed that there had been no progress of the tumour zones.

I understand that this sentence is not entirely satisfying and that anyone not in Nantes would have wanted to hear (even more) positive news. But those who have been around in the past few days will feel like I do: relieved.

The discussion with Dr Gourmelon (the Oncologist) went well. It appeared that a number of signs which have been puzzling us in the recent past were also unclear to her, so it was agreed that we would be seeing a neurosurgeon tomorrow.

The rest of the day saw Lindsey volunteer for many things, and oscillating between her usual fighting spirit and being profoundly fed up.

Love.

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Lindsey, newsletter # 60
Nantes, Wednesday 21st of December, 19-00.

We saw the neuro-surgeon today. With the different people we are seeing, there are systematically two dimensions. One concerns the scientific, technical, medical capacity. The other is called empathy. And it is clear that both matter.

I am no expert to judge the medical aptitude of the person who rapidly dismissed Lindsey this morning with something like « all is OK as far as I am concerned ». But he certainly gets an empathy score close to zilch.

There are many ways of getting a bad empathy score: these always involve forgetting that Lindsey is there, showing that we are wasting some time which may be valuable for something else, and often talking to me.

So Lindsey came out of this very deceived. She had (over-) expected this person to solve everything, and was furious to find that there was nothing to do.

From my position things were a bit brighter (even more so after the oncologist -who has an empathy score of « sobresaliente« – phoned me to reassure us). There were a couple of worrying technical issues and the objective of the visit was to check these.

The other good news is that we have a much more active Lindsey right now. She spends much less time in bed, has a splendid appetite. We went out this afternoon and reached our local supermarket. It had been a while we hadn’t walked to far.

And we had a surprise recently… Our parcel arrived! Yes! The parcel. The one which was sent in Kyoto on the 13th of June, reached Nantes in August (but we were not informed), then Colissimo decided to send it back to Japan where it was rescued by Michelle in October and sent back again.

The parcel contained some winter clothes but also many small items which we had decided to send back. Between our prized possessions, « papa et maman » , two Japanese dolls bought in Toji market, which we really like.

Love

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Lindsey, newsletter # 61
Nantes, Sunday 25th of December, 23-00.

Happy Christmas!

Lindsey woke early and wanted to go down for breakfast (this being the second such occasion since July… the norm has become that she has breakfast in bed).

So down we went, were joined by Boris and Vikki, worked as a team in the kitchen to stuff the capon (I learnt that you could stuff it both through the « natural » entry and following the neck). Lindsey took charge and the three other acted upon command.

Once the bird in the oven (at the remarkably early time of 9-57… three full minutes ahead of schedule), we opened the presents and Lindsey went to rest.

This allowed me to go and run down some of yesterday’s excesses.

The lunch was a success. We had too much to eat of course, and a bottle of Maltese red wine was produced and drunk.

After lunch, Lindsey was tired. We probably have overdone it. She spent the afternoon resting. The prospect of having her wake up at three in the morning wanting breakfast is a bit worrying.

It is also a bot sad because we had been having a nice series of 3 or 4 days where things had been going really well. We’ll just have to hope this evening is just a one off.

Happy Christmas!

Lindsey, newsletter # 50

Nantes, Sunday 1st of November, 18-00.

The week consisted in two very different phases. Till Thursday… hell. On Thursday 5 pm, hope.

You can guess when this week’s two pictures were taken.

I was on holiday so I was able to be at home most of the time. Vikki was around also and Boris arrived fro the week end.
During the week end we were able to do some quite strenuous things like go to IKEA on Saturday at peak time. I had problems keeping up with Lindsey (but was also quite scared of losing her).

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Lindsey, newsletter # 51

Nantes, Saturday 12th of November, 14-00.

And the weeks go by. Progress exists but is slow.

Only Vikki and me right now. And I had quite a lot of work so Vikki had to take most of the day shifts. Lindsey has been physically better, at least most of the time, but often very confused. This, until yesterday evening.

Then she got tired but seems to have recovered nicely after lunch, today.

Confusion means memory issues, long term (not remembering events from some months ago) and short term (what did you just say?). The hope is that none of this is permanent as there have been other moments where these symptoms were not apparent.

On the positive side a number of activities were launched this week:

On Monday, a roast chicken was produced, with Lindsey acting as chief cook: this means that the hard work was done by one of us, but the important decisions were taken by Lindsey.

On Tuesday we went shopping in a very large supermarket. This is not just physically hard work, it is also stressing. Having to go through dozens of different types of yoghurt, check sell-by dates and prices, etc… can be a complex matter. A new item appeared during the visit: a bonnet which she is now wearing all the time.

On several days long walks took place. This may seem spooky but a favourite walk is « to Cambronne and back ». This involves walking through the « Cimetière de la Miséricorde », which is the largest (and I suppose the oldest) cemetery in Nantes.
Ah, I see only those who have come to Nantes are convinced. I will have to have a special entry about Cambronne and the spirit of how things are done in Nantes.

On Friday, 11th of November and armistice day we went off to Bouin where we met our friends Sylvie and Hugues as well as their son Tom. We arrived early and had some time to enjoy watching the sea. Then lunch in which Lindsey bravely went for the couscous. And we followed on to see our friends Nadine and Jean who are also going through some tough times.

We have continued receiving encouragements from many. Some arrive to Vikki or to me, others directly to Lindsey. A special mention to the flowers which arrived from Catherine, Ulli, Nelly, Sylvie, Jacques, Thierry, Hugues and Pierre. This has become a habit! (but I have to say that none of the pictures of Lindsey with the flowers was able to show how happy she was.

Love

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Lindsey, newsletter # 52

Nantes, Sunday 19th of November, 17-00.

A wet Sunday.

We did manage to find one hour without rain, which we used to « walk to Cambronne and back ».

I suppose this is as good a moment as any to talk about Cambronne. He was one of Napoleon’s generals, and became Maréchal de France a few months before the battle of Waterloo, where he became famous. When all seemed lost Napoleon in the Imperial Guards. The Guards were the elite troops many of which had been with Napoleon in the Campaigns of the last 20 years and had fought all over Europe. They were of course feared by all. Even on June the 18th, 1815. But that day the odds were against France and the guard was outnumbered. They were therefore attacked by the English troops who gave the French the chance to surrender, arguing that all was lost and didn’t need to prove their bravery. The French general Cambronne answered by the famous words: « La Garde meurt mais ne se rend pas », which translates to « The Guard dies but does not surrender ». The English cannoned and asked again for surrender. Again: « La Garde meurt mais ne se rend pas ». So more cannoning followed, and this time the answer was that famous French word (I believe it is the first I learnt at school): Merde!

When I was a child, Napoleon was studied at school each year. The History programme would start with the Gauls, teach us about the Christian king Clovis, then run through some obscure kings all called Henri and Louis, before getting to Bonaparte. And the chapter about the first Empire would end with the image of the French forces dying on the spot yet having time to swear and pronounce beautiful final worlds.

Cambronne was from Nantes and his tomb is a short walk away from the house. So it has become a favourite walk. And there is where, to my great surprise I found out that he died 27 years after the battle of Waterloo.

I understood, essentially that indeed « The Guard died and did not surrender », but this doesn’t mean that its leader, who pronounced the famous words, had to die.

I have even reached a private opinion that Monsieur Cambronne is quite representative of a spirit I am meeting too often these days…

Lindsey and I have become quite attached to Cambronne. On the 18th of June 2015, the day of the bicentenary of the battle, there was just one flower on Cambronne’s tomb, which Lindsey had deposited.

Lindsey… who has had a rather nasty week. Many moments of weakness. On Tuesday we saw the oncologist who was not happy with Lindsey’s condition and believed that it could be explained by an infection. So tests were done and antibiotics were given.

Things started getting better on Friday: walking was possible again, getting interested in things, going to the market, deciding to reorganise the house. We even watched the rugby match together (France Vs Australia) last night.

On Tuesday, Enzo arrived. Enzo is an Italian friend who shares his time between Montpellier and Calabria. Enzo is the father of Francesco who was Boris’ great friend through the years we were in Cournonsec. Having him around is proving of great benefit: he sleeps even longer siestas than Lindsey does and his pasta is delicious!

I have had one piece of good news this week. On Friday, Unesco wrote to me letting me know that they had given the Unesco chair at University of Nantes on Open Education for which I had submitted in May. The problem is that the chair will probably involve travelling quite a bit… So there are things to be sorted out.

Messages and tokens of support continue to arrive. Thank you all.

Love

Colin

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Lindsey, newsletter # 53

Nantes, Monday 28th of November, 14-00.

On Wednesday, Lindsey started chimio. She has a 5-day cycle, then 23 days to rest till the next cycle.

As with all previous radical changes in her treatment, strange, new and unexpected things happened.

On Wednesday, I was in Paris (giving a talk to a « women in science conference »!) so Vikki took charge. She gave the pills in the morning and observed that soon afterwards Lindsey just « dropped ». Exhaustion. Even bringing her back to bed proved difficult. A couple of hours later Lindsey was up and bursting with energy (possibly too much). She then went on for a couple of hours during which time she was unstoppable. Until, all of a sudden, she was exhausted.

The next day, the same pattern occurred. This was worrying since (as usual) the doctors hadn’t presented me with this scenario. I phoned and was reassured that it was one of the possible things that happened in these cases. In the afternoon (Friday), as I was giving a talk in Nancy through the web and a robot (I will provide a video as soon as possible), Lindsey was running around cleaning the kitchen, eating, finding it difficult to rest. Then, just as I finished my talk, Lindsey dropped again. Back to bed, out for the count. Worrying, but also exhausting for us! Boris arrived later in the afternoon and Lindsey started feeling better again and we were all able to enjoy her company.

On Saturday afternoon Luisa and Jose arrived. They had flown into Orly, rented a car and driven to Nantes. It was of course great to have them with us. As they arrive in a high, we went off to Cambronne and back. Then Lindsey went down but was able to join us for the Haka: France was playing New Zealand.

Sunday saw Lindsey getting up and helping us prepare a huge chicken which was to be our lunch. Before that she had wasted time on the computer playing games. Actually, that isn’t such a waste of time since many different abilities are being tested.

So what started like a worrying week has ended up by seeing a pattern emerge in which many things can happen.

Love

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Lindsey, newsletter # 54

Nantes, Wednesday 30th of November, 22-00.

Julie arrived today! She was allowed to see us pull upon the wishing bone. The bone came from the chicken cooked and eaten on Sunday. The tradition is that whoever gets the big half is awarded a wish.
And in this case…

Lindsey, newsletter # 45

Nantes, Sunday 2nd of October, 23-00.

Two weeks of treatment to go. The most positive thing we can say about the past week is that it is past us.

We had to change the dosage of medicine, worry about many things, see the ear specialist on Friday as Lindsey was complaining about the ear. Worry, worry, worry…

Mostly, Lindsey has been strong physically but muddled at many moments. Appetite is still good and well looked after (see picture).

Nevertheless, it was great to have Jill’s help during this week. We realize this is about team work!

I am sometimes afraid that this blog which was supposed to be about Lindsey may end up about me. Any reader who doesn’t want this and feels bored with my introspections may benefit from the progress of technology and click here.

I am discovering more and more about the human nature. At first I thought it was just bad luck: complicated professional problems have seemed to arise everywhere in the past couple of weeks. I couldn’t understand why, just now, I was discovering that collaborators in who I trusted where undermining my efforts. I would find out that projects closely linked with my own actions were being launched in which I was not part of, then that these collaborators were asking me to stand down to let them run the projects I had launched.

I then realized that this could not be bad luck and had to obey to more complex reasons. Perhaps, was this all in order to help? Perhaps did they feel that I had too much on my plate and that it was not worth bothering me? But then I cease to be informed so (I suppose) it becomes absurd to let me participate to the decision making. I don’t realize this (nothing is said) and still think I have a say, so I will propose an action, suggest a policy. More importantly, the principles for which I have been advocating for long become secondary: again, nothing is said, but you realize that the route which is taken is necessarily going to lead to a conflict between the principles and some now unavoidable decisions.

And then the clash: you still want to put forward the principles, but since you are no longer part of the decision group, you become a problem. The problem. And you are told to step down.

My friend Pierre told me that I was in fact facing a problem oncologists warn their patients about: « during the first couple of months there is a lot of empathy. But prepare for the blow! because after this period professional relations become nasty with people attempting to get rid of you ».

Another image is that of the wolf pack. When an old wolf is injured, the younger wolves will start by helping, perhaps licking his wound. But rapidly they will enjoy the taste of the wound and will bite. And when one starts biting the others will follow. It is actually ecologically sensible: eliminating the old wolf is probably a good thing for the pack.

Only it hurts.

Love

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Lindsey, newsletter # 46

Nantes, Friday 6th of October, 20-00, then Sunday 10-00

At last the week-end! This remark we all make, obviously. But it has a special meaning as I write these lines, lying on the bed with Lindsey resting next to me. I feel exhausted, but then I look at her and feel I can’t even understand what « being exhausted » means.

The 5 last few days have been very difficult. It started rather well. On Monday there was punch. Lindsey even made the dinner! On Tuesday things were still OK. She started making the dinner but had to let me finish. I do understand that « making the dinner » is not an essential clinical assessment, but it does require stamina, planning, organisation, etc.

Then, little by little things became worse. Lindsey much more tired and more emotional. Emotions are very understandable, of course, but they are very difficult to deal with too. So we decided, with the doctor, to add some anxiolytics to the treatment.

I am not sure that these are kicking in yet. If anything, seeing 7 tablets on her tray in the morning isn’t doing much for the morale.

If I started this entry on the bed on Friday evening, I am completing it in a chair on Sunday morning. On Friday I had to interrupt because the noise of my fingers clicking on the keyboard was unbearable to Lindsey. Again an effect of the radiations: the left ear is perceiving too strongly certain wavelengths…

And yesterday was Saturday: Market in the morning, Supermarket in the afternoon, and the rest of the time dealing with millions of administrative items: reimbursements from Korea (it seems that the social security is dissatisfied that the bills are written in Korean… what do they expect me to do?), bills for the cleaner (interestingly, whereas these have arrived on time, the money we are supposed to receive from the insurance has not), and many other items of that nature.

As I wrote above, the week had been hard. I gave nearly 20 hours of lectures, and a couple of extra talks on Friday. This may seem little to people outside University, but lecturing is normally only about 10% of my time…

We have no pictures this week. Essentially because Lindsey has gone out very little. It seems clear that the next 10 days, until the end of the radiotherapy is going to just be about resting as much as possible, recovering and battling on.

Love

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Lindsey, newsletter # 47

Nantes, Tuesday 11th of October, 22-30

Boris arrived on Monday. Vikki left on Tuesday for a well-deserved rest in Malta. We are attacking the last week of treatment. Monday was very hard and Tuesday started in the same manner. Then, somehow, things brightened up a bit and there was that little bit of extra energy and more importantly the capacity of opening up and talking about other matters.

The result was a very nice evening with a great roast (Boris cooking).

Love.

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Lindsey, newsletter # 48

Nantes, Sunday 16th of October, 17-00.

So little to report…

We knew this was going to be a terrible week. It didn’t quite make the term « terrible ». It stayed somewhere between « frustrating » and « difficult ».

Vikki left on Tuesday to discover Malta, enjoy the sun, boost her morale and rest. So Boris took a week holiday and arrived on Sunday afternoon.

He has proved to be another great asset showing talent when cooking, ironing, deeding, measuring medicine, shopping, driving to and from the hospital.

Having Boris around was great. I actually even managed to spend one night in Paris (Thursday). This was not easy for me…

Lindsey has been tired. Very tired. This means spending a lot of time in bed. It means requiring a wheelchair when we go to the hospital. It also means incoherence in conversations and a very emotional situation.

The week-end… Boris and I managed to bring Lindsey down for lunch. And that is about it.

We now only have two more radiotherapy sessions left (Monday and Tuesday). After that we get into what they call « the rest period ». We should see Lindsey recovering. Let’s wait and hope.

Love

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Lindsey, newsletter # 49

Nantes, Saturday 30th of October, 14-00.

Lindsey resting next to me. The ghastly oedema had left her quiet for 3 days but decided to make her life hell once again. It’s not just about the pain, it’s about life itself.

In moments like these I remember a beautiful day in June, on the Kumano Kodo. I probably was too far under the Japanese influence but I couldn’t fail to understand that we were just so wonderfully happy that it was surely going to be impossible to match that happiness. And the Japanese conclusion was crystal clear then… possibly the same one as the intelligent gambler takes: leave the game when you are on top. Fifty-four years of Judeo-Christian education were too strong to do anything drastic.

I should apologize at this point for not having updated the blog for a couple of weeks. I suppose the reasons were that I usually use the week-end for this and last week-end was just too difficult. I also have been kept very busy by my work and cooperating with looking after Lindsey.

Cooperating, because we have been (and are) many involved.

Boris was in Nantes till the 19th. His presence was very comforting, his efforts were precious.

My brother Luis was with us for quite a few days too. We valued his cooking and the care he took. He also had a medical opinion which is something I have been needing for some time.

Jill came for one week, Friday to Friday. She was here at a difficult time, possibly when help was needed most.

And Vikki came back from her Maltese trip. With renewed energy!

As I wrote in the last entry, Lindsey’s Radiotherapy and Chemotherapy sessions ended on Tuesday 18th. We had madly supposed that with this, the period coming next would be quiet and recovery would be rapid. This has not been the case: the end of the radiotherapy comes with higher doses accumulated over the burden of the past weeks. So the whole period has been just the consequence of that: Lindsey exhausted, with morale shifting very much.

I am left with dozens of boxes of pills and I try combinations: should we stop the anxiolytics in the morning? Is Codeine going to work better than Tramadol? Can we get away with only Paracetamol?…

On Monday (24th), things started getting better. Little by little, the good hours have become longer, there has been more strength. Lindsey has been interested in herself again, her hair, her skin. She has also been picking up strength and wanting to fight back.

Small walks have taken place, and she has started working with the physiotherapist.

On Thursday evening, Jacques and Thierry arrived. They drove from Paris (and drove back the next day). With them we have had some brilliant times over the years. Our claim to fame has been repeating canal boat renting in England over two consecutive summers. To the amazement of many we found great fun driving down the canals, stopping for the night close to convenient pubs and enjoying the English summers. I can only send the reader onto a video in which it is clear that this was not for those scared of high speeds, we got a reduction because we kindly decided to clean the branches from both sides of the canal as we sailed down and I am quite incapable of filming.

We had a great evening on Thursday and my attempt to cook Moby Dick, a 2.3kg bonito succeeded.

And even better on the next day (yesterday) where we went to the restaurant. This was the first such experiment since July.

Love

Lindsey, newsletter # 39

Nantes, Thursday 1st of September, 19-00.

So much to do. So much to do… I nearly miss those hours in the Severance hospital where I had time to write.

Starting from the end. Lindsey much stronger. Walking every day, and not round the ward, round our part of town.

Putting on a little weight (needed). We are now trying to transform this weight into muscle.

Today we had the first session of radiotherapy. Actually a mock session where different things were tested. The real thing starts tomorrow. But even for that we had to go through some strange moments. The appointment was at 2 pm and the ambulance I had booked was due at 1-15. The ambulance service is part of the « package ». It isn’t a real ambulance, more like a taxi. But this seems convenient when you have to go and come back every day.

Anyhow, 1-20 and no ambulance. I try phoning and reach some national ringing tone. At 1-25 someone picks up my phone. I say I am worried because of the absence of the ambulance. He says « I know, it is a problem for everyone » (I am not sure how he knows because I have not given our name yet). I ask what happens next and he says that I should wait and understand that this is because the state is not giving them enough money. I explain that I am not interested but know that a machine is waiting at 2 and we could miss our slot and he again attempts on making me feel guilty for not writing to my MP asking for extra money for the ambulance companies.

I tell him to cancel the whole thing and bring Lindsey myself.

The rest of the week has been quiet. Lindsey getting better and better, many questions to try to deal with. The great bit is organising the visits. We have had Jill, then Georgie, today Jesus and Merche, and Madeleine. This may seem like running a hotel, but it is great for morale.

Love

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Lindsey, newsletter # 40

Saturday 3rd of September… Lindsey’s birthday. 1700 updated 2300.

One year ago we were sailing… Sailing from Amboise to Chenonceaux in a balloon.

Today, a much less energetic birthday, but still lots to do.

The morning was about opening the door to people delivering flowers. Actually this had started yesterday! So let’s say thank you to…

Carlo, Gaby, Howard, Beth, Madeleine, Bump, Luis, Corinne, Jacques, Ulli, Nelly, Pierre, Sylvie, Thierry, Catherine, Hugues, and our neighbours next door for the nice flowers!

I may have forgotten someone, including myself. In the picture we have arranged all the flowers on the table but they are really in different places in the house. Running out of vases!

Ah. The hair. Obviously, the two operations required hair to be cut on one side. The result was not very pretty. Merche agreed to cut. Her first attempt was very modern. Lindsey decided (against the opinion of many of us) to cut it all off! Merche was happy to oblige.

Those who disagreed have now to accept that once we get used to it it is very nice.

Lunch… Talensac market allowed us to find exciting food. The first prawns appeared on the menu. I did try to impose the infamous bulots as the menu item of the day but had little success. Tonight lobsters and other shellfish…

I suspect the afternoon is going to be about answering phone calls and skyping. One thing is clear… Lindsey has many friends and people who love her.

Lindsey is in very good form. The treatment is not being too hard on her. At least so far.

Evening. Lobster was delicious. An attempt of a birthday by Boris with no fat was declared to be « interesting ». Flowers arrived even in the evening and were welcome. These came from Birmingham.

Love.

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Lindsey, newsletter # 41

Nantes, Saturday 10th of September, 19-00.

One week later.

Radiotherapy on week days, chimio on all. Routine, but not a routine. Each day is slightly different. The time of the radiotherapy varies which means that the time at which the pills have to be given differs.

The reactions change also. One day Lindsey wakes up great and devours her breakfast. The next she is very miserable, can’t open her eyes… and devours her breakfast.

We know we will not really have any information about how it is going until the end of the treatment but are attempting to read telltale signs at every moment…

We meet many people who each have a role: the nutritionist, the nurses, the radiotherapist, the other doctors. Information is given and retained. We understand or do not.

Frustration with the system… For he or she who has been reading this blog since the beginning, one interesting development: the French insurance company who made me go crazy while we were in Korea has contacted me following a very long letter I wrote explaining how much they had failed. The person who spoke to me was most apologetic. She had checked all what I had said and found out that, as I have been writing in this blog, they had failed in so many different ways. They had indeed lied, taken far too long to give me answers, and this person clearly indicated that whereas my own mails were precise, theirs were incomprehensible. I am not sure what happens next. It seems to me that apologizing is very nice but perhaps comes a little cheap.

While I am about these considerations regarding relationship with the outside, I only understood a couple of days how much we have changed through this experience. Life is about compromise: things are not black and white… sometimes we have to do things we only half like. This is of course even more the case in our professional life.

Sickness accepts no compromise. Once that is clear, it contaminates everything else. When you would have accepted the imbecile remark of a boss or a colleague, because you know that this will be compensated by some gesture, some other more positive action, now you react. You don’t believe in compromise…

Lindsey has now got her phone working again and spends time talking, reading messages, watching pictures on the social networks. Which is great!

Love

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Lindsey, newsletter # 42

Nantes, Saturday 17th of September, 15-00.

This was a hard week. Week 3 of the treatment and all we can hope is that it is working in a measure equivalent to how hard Lindsey is fighting and the pain it is causing.

Sometimes everything is all right. There is a smile, even a laugh. The step is strong and the real difficulty is in getting Lindsey to accept to rest.

But many times it is so very difficult to do anything. « I haven’t slept » are Lindsey’s usual words. It may mean exactly that, or only that she is exhausted.

Most times we have a bit of both. Quite unpredictable.

On Tuesday Hélène visited. Hélène has been teaching Lindsey to turn over the past few years. To turn, as in pottery. Hélène has agreed to come to the house and help Lindsey get back on her wheel. This may seem simple but requires a lot of strength and skill, so it is quite a challenge. On Tuesday they seem to have spent most of the time speaking and getting ready but still accepted to pose as I had asked to have at least one photograph taken for the blog.

Today is Vikki’s birthday. We were hoping to go to the sea, have lunch looking at the ocean. I even contemplated the idea of having at last a swim in the sea… But Lindsey has just been exhausted all morning, made it to lunch just to be able to be there when Vikki opened her presents. So we adapt. We went to the market, bought a couple of (whole) tunas and now I have to find out what we can do with them.

On the side tracks of all this I decided to reject the settlement offer of 1500€ which the insurance company made earlier this week. I will now have to ask lawyers to look into this.

Love

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Lindsey, newsletter # 43

Nantes, Sunday 25th of September, 16-00.

Every week-end I check the Google analytics, half hoping that nobody is connecting and that I don’t have to write the blog. But I then find that people in London, Morales, Saint-Etienne, Alicante, Birmingham, Kyoto, Paris, Grenoble, Nice… seem to keep connecting. And I do get some messages of encouragement, asking me to continue.
And even, some of you (readers) have been encouraging to do so. So I do feel it is a duty, but a sweet one.

The week has been complicated. Clearly, the radiations have been effective. At least in their secondary effects. There have been many shallow moments, where Lindsey has been very tired, had huge difficulties in putting sentences together. At the end of last week I had been worried about this and discussed it with the radiotherapist. He waved away my worries and nonsensed my suggestion that increasing the dose of cortisone might help to reduce the oedema.
Things got worse. On Wednesday I was able to get my worries through to the oncologist who immediately multiplied by two the quantity of cortisone. It then took three days to regulate. I just got the impression that time had been wasted for nothing.

The treatment is just as hard as expected. Those in the know tell me that the two last weeks are the worse… I just don’t know how much worse it can get. At times it even means that Lindsey can’t walk. And since I am driving her to the hospital myself this becomes very complicated: clearly the ambulances believe they own the palace and parking as a private citizen, or finding a wheelchair are just impossible missions.

Let me be reassuring: we only needed the wheel chair once. On Wednesday, things were very difficult and thee morning involved the radiations, seeing the nurse and waiting for the medicine to be given to us. Long, boring and, for Lindsey, very tiring.

After one month running around the hospital I understand that we are in France several leagues away from what I experienced in Japan in Korea. It’s not the people: there are in both places wonderful nurses and doctors (and the inevitable cretin). It’s the logistics. There is just so much wastage here:

• I don’t understand why Lindsey’s radiations have been interrupted for 6 days because the machines had to go through maintenance.
• I have now had enough confirmation that the fat the treatment took so long to start has no therapeutical explanation whatsoever. Just straightforward incapacity of doing things faster (i.e. as fast as in Korea).
• When in hospital, we spend more time in waiting rooms than with actual medical staff. Why?
• I am bringing Lindsey myself. But most patients I talk to in the waiting rooms are not even waiting to be treated; they are waiting for the ambulance to pick them up and go home.

Illness is a moment where friendship matters. A lot. Lindsey and I have received some wonderful messages of support. It is difficult to describe how important this is. But let me use this blog to say thank you, without giving names. Feeling that we matter to people is just so important.

Love

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Lindsey, newsletter # 44

Nantes, Tuesday 27th of September, 22-00.

Things have gone worse… and then better.

Monday was horrible. The effects of the radiotherapy were that Lindsey cannot make the difference between truth and dream, between what was said and what she thought had been said. Typical conversations would be « do you want some water? » « did you ask if I wanted some water? » « yes, I asked if you wanted some water » « Why did you repeat yourself? You have now asked three times if I wanted some water ». This of course represents a terribly complicated situation for those around her.
But more even for Lindsey who understands that things are wrong.

On Tuesday (today) we went to the hospital. Radiations have started again. I did ask if having the machine closed for 5 days because of maintenance was a normal procedure. I got the answer that the maintenance was 3 days. The other 2were the week end. No comment.

Yet today, somehow, things became brighter in the afternoon. We probably got the cortisone dosage right but Lindsey recovered energy, speech and humour. The wonderful flowers she received from some dear friends was also possibly part of the reason.

When such a day ends don’t know if to be happy, to worry about tomorrow, to just recover some energy for the next day.

Love

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Lindsey, newsletter #31

Seoul, Tuesday 16th of August, 05-00 (San Roque)

Ready to leave!

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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

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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

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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

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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

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Lindsey, newsletter # 36

Nantes, Friday 19th of August, 13-00.

No comment.

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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

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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 1^st 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

On 18th of July 2016, Lindsey, who had been feeling very tired for the past few days, was examined in the University hospital, called the Severance, of Seoul.
In the most ghastly evening of my life, Lindsey was detected a Glioblastoma.

Because we were at the other end of the world, I started writing mails to family and friends and decided I had more urgent things to do than to answer to individual petitions for information.

So I started writing a blog.

In its primitive form the blog consisted in one file. It was locked and could only be read with a password.

In August 2018 I decided to reorganize it a little. I corrected some errata and made a couple of characters unidentifiable so as to be able to share this publically.

Why would I want to share it at all? Is there anything worth sharing? I certainly have not put in the writing the necessary effort nor do I have the required talent which would make me write easily in good English.

So I guess I am only « publishing » this blog as a way of expressing my profound love to Lindsey.

The blog was organized with the latest entries at the top, the oldest at the bottom. The new organisation is reversed, with the entries organised by months.

To reach a particular month, you can use the following index:

• July 2016
• August 2016
• September 2016
• October 2016
• November 2016
• December 2016
• January 2017
• February 2017
• March 2017
• April 2017
• May 2017
• June 2017
• July 2017
• August 2017
• September 2017
• October 2017
• November 2017
• December 2017
• January 2018
• February 2018
• March 2018
• April 2018
• May 2018
• June 2018
• July 2018

Lindsey, newsletter #1 (Tuesday 20th)

Seoul, 20th July, 10 am

I found Lindsey well awake this morning. Much more chatty and responsive. Also better colours. We even went for a walk (but walking around a large hospital is not fun).

Doctors have been in and heard us say that we had decided that the operation should take place here. Also the French admin seems to have worked (thanks to Boris) and sent the necessary paperwork.

I have seen the Neurosurgeon and the operation will take place tomorrow. I am to see the doctor later today to be fully informed of what it consists in and signing the different papers.

I had one nice phone call from administration letting me know that they didn’t need me to go and see them until the patient is discharged. Looking forward to that!

We are moving to the neuro ward at some point today. By then I will have solved other problems:

My Spanish colleagues and Friends Jose and Jorge, also in Seoul in this moment for the same conference, are trying to get the washing machine to work. And they have suggested that it is possible to have a skype extension with which you can phone to normal phones. This will be handy!
In 20 mn they are even coming to visit (Lindsey suggested that). They are being great.
I will write more later.
Ah, I found Jill’s correct email. Sorry for using the old one yesterday.
Best way to help at this point : if people send me emails of encouragement, I will read them to Lindsey.
Love

Colin

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Lindsey, newsletter #2 (Wednesday 21st)

Dear all.
Thanks for the support.
These are very stressful moments for those in Korea, but also for those who love Lindsey and are far away.
I will not have time right now to individually answer each mail (I suppose that one imagines that this is all about waiting and seeing, but it is not, it is about getting a huge number of small details fixed and finding a maximum of time to comfort Lindsey and getting the rest I need to get through all this myself)
I will read to Lindsey your different mails of course. All these will be used to get every bit of energy I can into Lindsey for the terribly long and complicated operation she has to endure on Monday.

Luckily, Lindsey has two fantastic children who are both deploying their efforts and talents in order to help.
Boris is helping with interfacing with the completely inefficient French assistance services and interacting with you. I am truly impressed with his calmness. Please contact him for information, advice, etc
Vikki has obtained leave from her employer and is flying over to help me: she will be arriving on Saturday. I was yesterday told that a Korean regulation is that someone is to be at all times with Lindsey in her room. And as there is actually only one person available…

I should not speak too harshly of the Koreans. Their rule actually makes sense, it was just the communication issues that made me not understand it before.

The hospital (Severance) is absolutely impressive with an enormous amount of dedicated staff. Everybody knows his role and does it. The guy who is operating on Lindsey is someone truly outstanding too. You can check Professor Chang Jong Hee on the web. Quite a record. I met him yesterday and he explained what he is going to try and do. I later found out through a colleague that he had postponed his vacations in order to perform the operation. That is dedication.

Again, many thanks for your support
Colin
PS Please share this email. One thing I cannot do is check if I have put in one person or not. I have just searched through the recent emails and put in the addresses. If you love Lindsey and are not included in the list, please do not feel offended.

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Lindsey, newsletter #3 (Thursday 22nd)

Dear all,
Don’t worry, I will not keep this daily letter on for too long! But as we are receiving so many shows of love and support, since Seoul is so far, and since I am having many questions and have no time to answer each of you individually, let me continue a bit.
First of all, we have had 24 hours of positiveness. First: no bad news (makes a change)
Then, Lindsey feeling stronger, more lively and combative. I believe strongly that all the messages you are sending are playing a big part here. Please remember to write to me: Lindsey is not checking her mail/whatsups etc.
Then, the fact that the cavalry is coming in rapidly. All the way from Broome, Australia. Vikki is about to catch her (first) flight. Her presence here before the operation will be great to boost morale.

Thanks to those of you who have proposed to come and give a hand. The offer is very appreciated. I believe that Vikki and I will be able to cope (with Boris at a distance ensuring a huge amount of tasks). Also, Seoul is complicated re logistics and I am not sure being more will make things easier. Of course, it is not up to me to forbid anything. I’ll add that on this matter (as on all) Lindsey and I are in full agreement.

Yesterday Lindsey went through her training session. She is to be operated during 10 hours, but during the operation they will wake her up and during one hour and a half she is supposed to answer to questions, do strange things like a special arm routine while counting or answering questions. Complicated enough, but this is to be done in an operation room with the neuro-surgeon poking her brain. If you are Lindsey and enjoy those scenes in Doctor House or Grey’s Anatomy, you will understand. If you are like me and bury your nose in a book or a computer during those scenes you can only imagine.

So, every so often I get Lindsey to practice her piece.

Lindsey now dozing.

Love
Colin, Seoul, 8-20 am

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Lindsey, newsletter #4 (Saturday 23rd)

Seoul, Saturday 23rd, 9 am

Lindsey awake and watching a geek emission on the Discovery Channel about the amazing things you can do with your brain (!).

She is tired but animated. Plan is to have a shower, a walk around the ward, than mix rest with homework: we have to work on the sequences she is to produce on Monday during the operation.

Yesterday she had a less great day. Started well (which was when I wrote #3), but then there was a long lapse where she didn’t want to do anything.

Luckily, at around 4 O’clock she came back and we were able to have some nice time; Best was probably when my colleagues and friends Jose and Jorge, from Alicante came to visit. Lindsey was cheerful. And all the conversation was in Spanish (and just before she had been speaking French with Boris).

The night went well. I am the problem: I have to take strange positions on an uncomfortable couch to avoid snoring. I moved the couch next to her bed so that she can tell me if snore. It seemed that I didn’t or (even better) that it didn’t hinder her sleep.

I have just read on Whatsup that Vikki was in Singapore a couple of hours ago. She must be flying over South-East Asia by now. It will be great having her here.

Again, sorry I can’t answer to individual mails. I am having to spend a huge amount of time dealing with the incompetence of the French insurance-assistance programme for which I have been paying for 30 years and they are proving less that ineffective.

Lindsey has just got up and is in the shower. On her own. All very positive.

Love

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Lindsey, newsletter #5 (Sunday 24th)

[Again, apologies to those who did not get the previous ones, are missing one, etc. I am not organized enough]

Seoul, Sunday 24th, 11-30 am

Dear all.

Writing this 2 hours later than the previous days. Not that it matters of course.

The reason was that Lindsey was active this morning, enough to require my full attention. This involved doing exercises and going for a wander together (in a wheelchair). Then the cavalry arrived (Vikki) and whereas I hoped that this would give me more time, I have had even more to do with extremely complicated tasks like help them read some people’s magazine brought all the way from Australia (I am amazed that Lindsey can show interest in whatever they seemed to be talking about).

Anyhow, yesterday had been a difficult day. Lindsey was tired most of the day and wouldn’t do much. Then Vikki arrived and various things happened all at once:

• there started to be things everywhere in the room
• I was able to get out and have dinner without feeling guilty for the first time of the week
• Lindsey’s face started being radiant and smiley in a continuous way
• Lindsey’s pulse picked up an extra 10 points (the rest may sound trivial and subjective, this was objective).

The cavalry arrived again this morning with flowers, a paper blowable fugu, all sorts of food. Then the reading of the press started. In this moment Vikki has brought Lindsey for a ride down the ward. Second time out of the room today. Definitely much more stamina and will.

Tomorrow will be a big long day. From what I understand, they will pick Lindsey at 7am, Seoul time. Then she gets to sleep but is woken up around 11 for the complex part.

I am not sure when we will be informed. But I will do my best to write Newsletter #6 on time.

All our love

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Lindsey, newsletter #6 (Monday 25th)

Seoul, Monday 25th, 09-00 am

25th of July. Dia del Apostol. Dia de Santiago.

This is the day that many pilgrims choose to arrive in the city of Santiago de Compostela after having completed el camino.

Doing the camino in the coming years was possibly the only clear plan Lindsey and I had been considering over the past weeks when discussing about what we would do when getting back to France after these lovely 6 months in Japan. We had both agreed that walking the Kumano Kodo had possibly been, of all our experiences since January, the most marking and beautiful. Even without the religious component, this sounded like something we enjoy.

And even when wanting to be rational and cool-headed, I do think now that this is a strange coincidence. We will really have to walk el Camino.

At 7-30 Lindsey entered into the operation block. We are now to wait, Vikki and I, looking at our phones to check that we are not being called.

Before that…

Yesterday Lindsey had a good day. We attempted to dose correctly the active moments with the resting moments. When Vikki left to rest, around 9 pm, started the « fun ». Every couple of hours there was something to do: imaging, marking, changing doses, then dressing and going into a closed room where she was to wait while some liquid was doing its job to lighten up the different parts of the brain.

During all this, Lindsey amazingly cool… I think she was more worried with what Vikki and I were going to do today while waiting than with her own experience.

Vikki joined us in the closed room at 6-30 and managed to smuggle in a mobile conversation with Boris. Well done!

Vikki now dozing. It’s going to be a long day.

Colin

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Lindsey, newsletter #7 (Monday 25th)

Seoul, Monday 25th, 2-30 pm

No news.

Seven hours have gone past. We have been nervously looking at our smartphones all day and waiting in a place easy to be met. Every time we hear steps we look up. The bright side of things is that we haven’t had news. Being told to remain on the watch to be able to take decisions if needed did not make getting an early call be a nice prospect.

So we wait a bit more. The longer, the better.

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Lindsey, newsletter #8 (Monday 25th)

Seoul, Monday 25th, 5-30 pm

No news. Ten hours now. Again, the pros overcome the cons. Taking time is good because it means that Lindsey did « participate » and that Doctor Chang has been very careful.

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Lindsey, newsletter #9 (Monday 25th)

Seoul, Monday 25th, 8-10 pm. We interrogated the nurses and they say that Lindsey is still in the operation block.

An hour go, I spotted Doctor Chang going into his office. So the guess is that they are finishing the job.

Wrong. Super-Vikki just went to find out. It seems that they started late (2 hours) so they is actually still some time to wait.

What is clear is that we won’t be allowed to see her tonight as she then goes to the intensive care unit in which visits are only allowed at 12 (noon) and 6 (evening) for 20 mn each time.

Severance Hospital was founded by the Presbyterians. I had noticed a large chapel on the 6th floor yesterday. This evening, as Vikki and I were waiting on the 10th floor (Lindsey’s ward) we heard some singing. A small choir was going around the wards. When they saw us, they even added an extra hymn for us. Very moving.

Vikki managed to capture it.

We are feeling very positive.

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Lindsey, newsletter #10 (Monday 25th)

Seoul, Monday 25th, 9-30 pm.

We have just seen Lindsey, spoken to Lindsey and even touched Lindsey!

The first battle has been won!

Professor Chang met us at 9 and explained that all had been well with Lindsey playing her part during the operation. I really believe he seemed happy about the outcome, even if possibly not as much as us and all those who are reading these lines.

And to our huge surprise he then said I could see her and when understanding that Vikki was the daughter, invited Vikki in, too.

Lindsey was wide awake. A radiant smile across her face. She even joined into the conversation.

We only spent 5 minutes of course. We will be able to see her again tomorrow at 12 and is to go into the normal ward in the afternoon.

If you are reading this and decide to celebrate, please, after toasting Lindsey, make sure you toast Professor Chang Jong Hee. Chapeau.

Love

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Lindsey, newsletter #11 (Tuesday 26th)

Seoul, Tuesday 26th of July, 15-00

Lindsey spent the night as expected in the intensive care unit. At 12 I was allowed in to visit her. She is exhausted.

But she can move all her limbs and can speak. But she has some (expected and understandable) memory lapses.

The doctor has gone on holiday till the end of the week so we agreed yesterday to talk at the week-end.

The best news was that Lindsey was allowed out of the ICU at 12-30 and has been put into her previous room where Vikki and I can be with her.

She is now resting and my guess is that she will need some time to recover strength.

Yesterday was a very difficult day. Many thanks to all those who kept encouraging with emails and whats’ups. It did help.

Love

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Lindsey, newsletter #12 (Wednesday 27th)

Seoul, Wednesday 27th of July, 8-00

Stable. After such a long anaesthesia, it’s about the different functions of the body slowly getting back to functioning. The day was very long, with Lindsey spending most of the time sleeping/recovering/ drowsing.

She did have something for dinner, but very little.

I expected to have a quiet night, but that wasn’t quite the case. She is often uncomfortable and trying to find better positions.

This morning she was clearly more alert and had part of her breakfast sitting up. But breakfast clearly was another effort so she has dozed off.

All his quiet.

This is going to take time.

Love

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Lindsey, newsletter #13 (Thursday 28th)

Seoul, Thursday 28th of July, 9-00

Things are getting better hour after hour.

As day went on Lindsey started recovering a number of things: opening her eyes for longer, sentences were longer too. The nurses encouraged her to do some exercise (walking around the room) and she did. She then sat on the side of her bed and had some skype talks with Boris and then with Jill, Julie and Georgie.

Appetite also is coming back slowly. The huge advantage of the Korean hospitals (or at least this one) is the quality of the food: not just better than average hospital food, better than may restaurants even!

She is receiving support mails from many, in different languages and from many countries. Reading these positive reactions is of great help!

Love

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Lindsey, newsletter #14 (Friday 29th)

Seoul, Friday 29th of July, 10-00

Lindsey moving around more. Walked down to the common room, stayed there for a while with a Korean gentleman trying to make me understand something about the Korean President (who seems to be a remarkable woman), then we came back to the room.

During our walk Vikki took a couple of pictures. In order for Lindsey to stand out better on them we hired an old man to pose next to her.

As you can see from the photos, she is physically doing well. There is still a lot we can improve as far as memory and speech goes. Through talking, looking at photos, reading her your emails we are doing just that. With results.

I talked about Lindsey’s food a bit. I can add that our food is quite exciting too: we have a dozen restaurants to choose from just in the main building (ours) of the hospital.

Of course, if you like Kimchi, it is easier to choose…

The excitement of the day consists in moving from the 10th floor to the 8th floor. They have decided that they had to clean 10th floor so everyone is to be moved. Quite an operation.

Love

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Lindsey, newsletter #15 (Saturday 30th)

Seoul, Saturday 30th of July, 9-00

On Saturdays the hospital clock suddenly changes. Breakfast arrives one hour later… The nice doctor from international affairs also comes later. But most other elements of routine remain as usual.

Routine which is also taking its toll. On Lindsey who would like to go home. On Vikki and I who have to work harder to remain alert and cheerful.

On the other hand, we did have grounds to be cheerful yesterday.

One of the junior doctors came into the room with his computer and asked me: do you want to see the MRIs? » I really thought the honest answer was « no » but managed to say « yes ».

I was then allowed a walk through the 3D images of « before » and « after ». And these were truly impressive. Clearly Dr Chang has done a fantastic job.

Physically Lindsey is tired but seems to find a lot of strength at meal times where she devours her food.
Memory and cognitive abilities are still not right but doctors are optimistic. We are working on all this. Old games like Simon says and charades have been reactivated. I am even asking the people we talk to on skype to play!
Love

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Lindsey, newsletter #16 (Saturday 30th)

Seoul, Saturday 30th of July, 20-00

Doctor Chang visited Lindsey in her room tonight and then Vikki and I were invited to meet him. He believes the operation went well (he added 300% better than he expected). When praised he told us that 50% of the merit goes to Lindsey.

She is recovering well and further progress is expected.

Lindsey is to be discharged on Wednesday and we are trying to organise a flight back for next Saturday.

There will then be treatment in Nantes during 6 months.

Again, there is a lot still to do and this is still an uphill climb.

But we can hope.

Love

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Lindsey, newsletter #17

Seoul, Sunday 31st of July, 15-30

With Vikki taking a day off and Lindsey resting I have not had any time to write.

Vikki was asked by Jung, a friend of Lindsey’s sister Julie, out for the day. Visiting Seoul. This was great for Vikki as she needed the break.

Less good for me because Lindsey is much more awake and « demanding ». She wants me to do the talking. And in order to get the go ahead for the plane she need beefing up. As far as the eating goes, no worry. But this also means exercise. And we are not allowed out of the ward, so it really means going round the ward one lap of which can be done in 5 minutes. Other patients seem to be with the same goal so it may be possible to organize a race tomorrow…

Anyhow, in three days we are out. I am a bit puzzled because I feel there is still a lot of medical care taking place and I can’t really imagine it is going to stop all of a sudden. And then we are supposed to have 3 days in the hotel. This will prove to be quite a challenge.

The rest of the time is taken trying to make sure that there is communication between the different parties involved: the hospital here, the French Insurance company, the hospital in Nantes who has to take over (I suppose they will want to keep her in observation for 24 hours when we get there) and a so called local correspondent of the insurance company which seems to be the one blocking everything (and which hasn’t had the idea of contacting me to ask if we actually needed anything).

The whole organisation is quite scary at times. A couple of hours ago a guy from France phoned the ward and spoke to me with « the voice of authority » telling me what I should do and showing he « knew his job ». Then he added: « do you have our email address? » to which I responded that I had actually sent him more than 20 emails in the past 10 days…

Anyhow, please don’t get hooked to this blog. I am slowly going to write less and let you get on with the summer.

Love