Lindsey newsletter # 120
Nantes Sunday 8th of July, 11-00
And routine set in again. The day starts early with the visit of the nurse. She checks a lot of things and gives Lindsey her daily jab of cortisone.
Then breakfast. Which, like most meals is not that easy. Lindsey is finding is complicated to masticate –and we are not sure why- so we are far away from the Lindsey who two weeks away would swallow everything which was presented to her. Most days, after that there will be a morning nap, which allows us to get things done. Then lunch, another nap, the afternoon football and we are nearly ready for dinner.
This routine is somehow controlled by the doctors which we do see from time to time.
Since the last post, the team has consisted of Vikki, Boris, Lali and I. I went this week to Paris for 4 full days to do committee work and give a talk.
The heat has been very high. I found in the attic a swimming pool which had come as a gift with something I bought many years ago. We actually are using it and it is proving very nice to refresh!
Lindsey newsletter # 121
Nantes Saturday 14th of July, 21-00
Allonzenfants…
Bastille day.
We spent it quietly. In the morning Susi, Ramon and I went to the market and bought some sardines. Lunch consisted in some lobsters I had bought and cooked yesterday. And the afternoon was spent watching Wimbledon and the world cup (the match for third place, I still find it difficult to understand how the English tabloids could feel thrilled by victories over Panama, Tunisia and Sweden, a draw against Colombia, a loss against Croatia and two against Belgium).
Lindsey has been very quiet. Far too quiet. Sleeping a lot. Wake for moments, meals, drink and little more.
Every day this week one new problem has appeared: the voice, the body control, eating, drinking, going up and down the stairs. In each case we worry, talk with the nurse or the doctor, try to find a way around the issue. Not simple.
On Monday the Doctor came and I tried my luck: “Err, I know this sound stupid, but can we consider the option of going to Biarritz?”. “Yes” was the straightforward answer. She couldn’t understand why I was so surprised. I told her that I am used to getting “no” as an answer to absolutely everything and having to work on from there. So it seems that we could go to Biarritz at the end of the month for a couple of weeks. This requires some organization of course, a lot of extra logistics. But if possible (I still have a lot of doubts) it would be really nice. Possibly more important for me than for Lindsey who seemed quite neutral about the idea.
Last Sunday we had a complete change of teams. Lali left with Corinne and Luis and Jill arrived. She had some nice peaceful days with Lindsey.
On Thursday she left, and a few hours later Boris left to London to a drama school for two weeks. I hope it goes well even if it may be very difficult for him at times.
Bastille day. There are fireworks tonight in Nantes; Susi, Ramon and Vikki have gone out. Lindsey was very tired so she is now lying in bed listening to some very quiet music. I am sitting next to her blogging.
Lindsey newsletter # 122
Nantes Thursday 19th of July, 09-30
Paris, 19th of July 2018.
2 years ago yesterday we reached Seoul. Lindsey had been sick and very tired for the past few days. But this time it seemed worse. So thanks to the organizers of the conference I was supposed to attend we got to the emergency ward of the best hospital in Seoul.
We reached the hospital at 8 in the evening. Tests and tests… including an MRI. At last the intern came and I asked: “is it a stroke?”. “No, we think it is a tumor”.
I have blurry memories of what happened next: signing papers with many zeroes corresponding to what the bill would be, going in the middle of the night to the only public internet I could find which was in the Starbucks of the morgue and attempting there to concentrate on finding phone numbers, addresses, emails. Getting some sleep.
The next day waking up believing I had had a bad dream and rushing to the Severance. And meeting Doctors.
I am in Paris where I spent the night. I was here to supposedly teach code to the MPs in the parliament. They were supposed to break session at 7. But they got into a constitutional battle and the French equivalent to the whips didn’t allow them to get out and go and code. So it was a bit of a waste of time.
I wondered till the end if it was safe leaving Nantes for one night. The Doctor said she thought it was. And after the frights of the 8th of June we want to remain in a quiet mode as long as possible.
And I have just checked with Vikki: everything is fine.
But clearly things are not going well. Lindsey is tired, difficult to move and had problems to eat. These seem to be less complicated now that we have decided to help her by providing healthy but not solid food.
We did manage to go out on Tuesday to the park and see the ducks and the river rats. And that was nice.
And before that (I nearly forgot!) we lived through France winning the world cup. Essentially that meant Boris winning the betting competition this year (which we have been running since 1992… when Lindsey won), Vikki going out to see the match and staying on for what seemed to be very wild celebrations, and us listening to these through the window.
Lindsey newsletter # 123
Nantes Wednesday 25th of July, 09-30
Dear Professor Chang
Two years ago today you operated Lindsey. The operation was long but successful. If I remember right she went into the block at 6 in the morning and was out at 8 at night.
I remember seeing you that evening and being allowed to visit Lindsey, with our daughter Vikki, in the post-op ward. To our great surprise Lindsey seemed more alert and full of energy than we were!
Two years later Lindsey is still with us.
I do remember the positive genome tests that did indicate that Lindsey was in the happy third of the population to have the right combination, which did give her better options.
I also remember that the statistics were clear: 12 months, but if the operation was aggressive enough, 14.
So we have done better than that. Of course, if it had only been about quantity, this would already be a significant result. But we made sure it was about quality too. So we have been able to use the past two years in many ways. Lindsey has enjoyed a number of things she used to enjoy. She has for example got back to pottery and been able to achieve a collection of bowls for the more junior members of our family.
We have also been able to travel a bit, meet up with friends, visit the family. Of course, this was done at those moments where the often heavy treatments allowed her a bit of rest.
Obviously you are not the only person to thank for this: the French teams who took over in Nantes have been extremely good and I feel that the medical decisions which have been made over these past two years have allowed to back the great job you made on the 25th of July 2016.
Two years later Lindsey is still with us. But only just. She is quietly fading away in the loving company of those close to her.
But I did want to remember you on this date and express once more the huge admiration I have for your skill and your kindness.
Colin de la Higuera
Lindsey newsletter # 124
Nantes Sunday 29th of July, 14-00
Lindsey is now very quiet.
I have put her Rag n’ Bones on Spotify. Hoping to wake her a bit so as to have something to drink and, perhaps, some lunch.
Only Vikki and I around. I brought Luisa back to the airport a couple of hours ago. As always the trip to the airport was not fun. It was nice to have Luisa around. That extra energy and patience which is so important when giving Lindsey her meals.
We are picking things up since, quite astonishingly –in part- we are driving to Biarritz tomorrow. We saw the Doctor on Friday who looked at us, then looked at Lindsey and asked: “Et vous, Madame de la Higuera, vous voulez aller à Biarritz ?”
Lindsey lifted her hand, turned it a little and stretched out her thumb toward the sky!
That convinced the Doctor and left us quite amazed because we had had no tangible evidence of communication for 20 hours.
All that was left was to prepare the logistics. Getting down the stairs, into the car, remaining comfortable in the car, dealing with the uncertainty. The Doctor suggested we used an ambulance to do the trip if we thought the stress would be too difficult to cope with. I explained that we did have some idea of how to deal with stress and told her about Korea. That ended the question.
Tomorrow morning a first nurse is supposed to arrive at 7-30, to sort Lindsey out, stop the drip, give her the cortisone. Then a second nurse (this time a he) will join us at 8-30 and he helps us get Lindsey downstairs and into the car.
Till then a lot of packing…
Lindsey newsletter # 125
Biarritz, 31st of July 2018
“And why did you want to come to Biarritz? » was the first question the Doctor asked. He was one of the many visitors of the day. We had arrived yesterday at 3 in the afternoon after an uneventful trip. The event was making the trip, of course.
Earlier in the morning, still in Nantes, two nurses arrived and after giving Lindsey her cortisone and her keppra they helped me bring her down the stairs. We had envisaged a chair, a blanket and at the end resorted to me holding the shoulders and him holding the knees.
Vikki did most of the driving, stops were limited. We got here with Lindsey quite asleep. Then the nurses, organizing ourselves, Boris arriving, people trying to adjust.
A nice evening, a bottle of Amarula, the pump telling us that there was air in the tubes so having to call out for help.
The doctor caught me out of my depth. I would have been alright talking about the nights, about the pills, about how we move Lindsey around. But that question was a difficult one not to get emotional with. “Parce qu’on ne voulait pas crever à Nantes” was one answer. The other was more poetic and just as true: because we married here. On 15th of December 1989.
This afternoon we went to Spain to do some shopping. Everything was closed. In Irun I asked and was told that we were on Saint Ignatius day. So we had to restock in the old frontier ventas.
It is quite incredible to be in Biarritz. Just that odd feeling that we have been able to “do it”. I suppose that to anyone else this will seem irrelevant. To Vikki and I it is quite an accomplishment.
On the evening before leaving I had a last expedition. To the Miséricorde before it closed to lay the best rose with Monsieur Cambronne. Of course, the gesture was done for Lindsey and it felt strange: I am trying to eliminate symbols and principles, yet it seems difficult not to do something completely unnecessary.
Love