Mois : août 2018

Lindsey newsletter # 126

Biarritz, 2nd of August 2018

Yesterday, no entry. Because there was nothing to enter. A lot of organizing with the new team, and of trying to solve the problems which appeared because of the trip to Nantes. Mucus to get rid off and lack of vigilance.

Lack of vigilance is to be dealt with thanks to an increase in the amount of cortisone. Mucus thanks to rest and effective action by Vikki who has now acquired a new expertise: plunging two fingers into Lindsey’s mouth and removing what she finds. She has become very effective.

This should not be taken as a joke. This is complicated and I have not been able to do it!

The vigilance issue is of course more complex. The goal is (as usual) to work upon the edema which reforms itself systematically.

In order to do this the Doctor has ordered an increase in the quantity of Solumedrol (Cortisone). Which started yesterday and should take time to be effective.

Already today, as Lindsey was resting and I was working (hush… I am not supposed to) I switched on a small screen with a video from NHK for Lindsey to look at. And after a while I checked and there she was, looking at some documentary about the Kumano Kudo between Ise and the main Hongu shrine.  It was strange. Clearly Lindsey was watching the video and enjoying it. But it was impossible to get into the video with her.

I am not sure what the above tells us. Possibly that the Doctor’s prescription is correct and that the cortisone may do the trick.

Enough hope, anyhow, to build upon till tomorrow.

---

Lindsey newsletter # 127

Biarritz, 3rd of August 2018, 2200

Very hot everywhere and Biarritz is no exception. For Lindsey this has meant keeping her in her room all day, where the temperature has been kept reasonable thanks to a ventilator.

The nurse (Franck) accepted my suggestion to bring her out and we did it around 8 in the evening. Lindsey is now sitting with us. And it is very nice.

Our visitors of the day were Jesus, el cura, and Marivi. Ah. In fact only two persons as Jesus and el Cura are the same person. Jesus is married to Marivi who is Jesus’ sister. Ah. I should point out that Jesus and Jesus are two different persons. In the 60s in Morales and the villages around Old Castille it was an unwritten rule that you could only be christened if you were called Jesus, Maria are a combination of these. A typical choice for boys would be Jesus-Maria, and for girls Maria-Jesus. To be fair you might get away with Juan, José or a combination with Maria… But alternatives would have been far too adventurous and the priest (called el cura) would possibly refuse christening.

I got lost and I got the reader lost here. What is important is that it was lovely to have their visit, that Lindsey did recognize them and she has been tranquil but present most of the day.

Corinne arrived today also and her expertise (Corinne is a physiotherapist) has been put to work rapidly.

Amarula again… possibly the last of the bottle. Just very nice to look and see that Lindsey is with us as we all talk and enjoy the summer evening.

---

Lindsey newsletter # 128

Biarritz, 5th of August 2018, 1520

No spectacular progress to report. Either way.

The nurses keep evaluation pain to 0, which is the good news.

A normal day in Biarritz starts at 7-30: during the night I will have got up 4 or 5 times to open and close the shutters. It is just so hot. But on the other hand Lindsey is having trouble regulating the temperature so I have to find the right equilibrium which seems to be somewhere too cold for her and too hot for me.

At 8 or 8-30 arrives the nurse. As in Nantes the different nurses are young and great people. Around 9-30 comes the aide-soignante who will wash Lindsey and make her comfortable. At that point I will have literally run out (gone for a jog).

We then stay in the room with a bit of music. Today I chose Cuban music which Lindsey used to enjoy. Lunch and the afternoon go by with very little activity, but then it is just so hot. The household goes into siesta mode. Sometimes Lindsey is the most awaken person then!

End of the afternoon allows me to go for a quick swim in the sea. The nurse will come back anywhere between 6 and 8, depending on the other patients, and be with us sorting the evening medicines out. Before leaving he (or she) will help us install Lindsey on the terrace, in a cosy chair. She will be there with us for a couple of hours, weather permitting.

The key medical concern we have is her neck which has been inflated for a while. As a consequence Lindsey has problems with anything going into her mouth. Of course we would like to deal with the neck issue when it probably isn’t a cause but a consequence.

---

Lindsey newsletter # 129

Biarritz, 7th of August 2018, 0620

Lindsey quiet right now and Vikki has just gone back to bed. The bedroom windows are wide open and a gale seems to be preparing. Which will have the advantage is bringing the temperatures down after an exhausting day of heat.

But the day was not only exhausting because of the heat.

The day started with me attempting to go for a run –but spending most of that time walking because of the heat and the humidity- and Boris leaving to Bordeaux for 3 days of work.

At around 11 Lindsey seemed agitated and the agitation built up to heavy breathing, some convulsions and the right arm and leg going stiff. The pattern seemed to repeat itself and become more violent so I called the Hospital who sent a nurse. This time it was Caroline.

She checked and phoned the doctor: the symptoms were those of an epileptic fit, but the medicine Lindsey has should avoid these. I thought she was trying to press my hand toward her stomach and was scared of a pancreatitis crisis. Sufficiently for the nurse to play safe and take a blood sample for later examination. Then Lindsey was given a shot of some strong anxiolytic which calmed down the convulsions and put her to sleep.

Lindsey spent her afternoon asleep and was still out when Dr Dospital and Franck (the regular nurse) arrived. By then I had received the biological results by email which showed that I was wrong (no problem with the pancreas) but did indicate an infection and a low sodium level. So issues to be dealt with in the next few days.

Juanma and Jesus arrived in the afternoon. It was nice seeing them again. Last time was in August last year. Many times in the past have we all 4 been out for lunch or dinner in Morales…

When we went to bed it was still very hot and I kept the ventilator on. A bit before 5 in the morning I turned it off. A bit later I noticed Lindsey moving and breathing heavily. It was clearly another epileptic fit. The doctor had decided to increase the medication for this last night, but the new dose only starts today. So I woke Vikki and we phoned the hospital.

And again Caroline arrived. And solved the problem efficiently. Caroline was known to this household because she was the nurse who came systematically four years ago when my father was sick. And she said she remembered us very well too.

It is 6-40 and I have already drunk 2 cups of coffee. The gale seems to not want to develop. I hope it is a good omen.

---

Lindsey newsletter # 130

Biarritz, 9th of August, 1530

Lindsey lying quietly.

Boris, Lali and Vikki taking turns with her.

A lot of wind and rain during the night. Which didn’t help us rest.

Things are complicated. We have had to call the nurses in at different moments, either to help solve an epilepsy event or to bring the temperature down.

The nurses seem to give us full marks and think we are a very nice place to work at. We give them full marks too: they are very devoted and will take as long as needed.

Jesus and Juanma left this morning. They were great to have around even if I couldn’t get away much. But I have been able to go down to the beach for a quick dip. It has probably worked well for the stress.

More doctors and nurses expected this afternoon, so no time for a siesta.

Lindsey is still with us in her way. When the medicine to stop the epilepsy dies out she opens her eyes and stares. Often she just stares up. But with patience, the right tone of voice, not too much light, she will turn her eyes to you and look.

We then try to speak and get response through eyelid language or the pressure of the hand.

(continued after the visit by the Doctors)

The Doctors were with us for an hour. Everything went as well as we could have hoped.

So we can rest a little.

---

Lindsey newsletter # 131

Biarritz, 11th of August, 1730

The lull.

Nothing much since the last entry. We go on with logistics, taking turns looking after Lindsey. The current nurse is called Pauline and she is very kind. But the others are great too. Yesterday Pauline needed someone to bring her something and it seems that both Elorie and Franck volunteered. And it was 8 in the evening.

We still feel Lindsey is with us.

Yesterday evening Julie and Jill were supposed to land from London. But their flight was cancelled and they are en route right now by train.

Before then there is a bit of time to try to give Lindsey some ice cream.

Love

---

Lindsey newsletter # 132

Biarritz, 13th of August, 11-00

Exhausting. I think Lindsey changed her breathing pattern twenty times during the night. Hyperventilating one moment, completely silent the next, through the nose, the mouth, both at the same time or neither.

Each change of breathing wakes me up. I then lie for a first eternity… then get up to check: is the right arm stiff? is there fever? is the left hand grasping? Once the tests done -and they are never conclusive- back to bed for another eternity to get back to sleep, only to wake up because of something else.

During the day, on the contrary, Lindsey is so quiet. Very peaceful.

Colin

---

Lindsey newsletter # 133

Biarritz, 15th of August, 1340

Dia de Nuestra Señora. As it is called in Morales. Morales where Lindsey and I have spent so much time in August in previous years. As I sit next to the bed I can only think of all the friends there. The younger ones won’t be up yet. The older ones will have been to the Misa Castellana, dressed up as Castilians from Goya times. At this time the reasonable people would be finishing the ronda de los vinos. Lindsey and I would probably only be starting it, meeting up with Jesus and Juanma. Los bares de arriba first, then los de abajo. My father would also be in a bar called “de los jubilados” where inevitably he would enter the wine tasting competition. This started as a low key affair some 25 years ago and some of us entered without even have bothered to go to bed that night. We would protest against the fact that we were amateurs whereas professionals started to appear (they had slept that night). We all stopped participating arguing that no tapas were served with the wine, only some very dry biscuits. My father kept going and we kept waiting for him, letting him pick his prize, look at his score sheet and we would all go together to the cuarto for the important meal which would take place that day.

Merche would usually act as chef on the 15^th. Merche who is coming from Toro today, with Jesus. Luis and Corinne are around too; they arrived as Jill and Julie were flying back to London.

Visits, a splash in the sea, food and drink. The nurses for Lindsey (in this moment she is called Marine) and little more.

Love

---

Lindsey newsletter # 134

Biarritz, 16th of August, 1550

Today is San Roque. On San Roque 2016 Lindsey, Vikki and I were flying back at last from Seoul. San Roque of previous years had been a festive occasion.

The night has been easy. In Biarritz they spend a lot of money on fireworks for the 15^th so there was quite a lot of animation last night; Luis, Corinne and Vikki made the trip to the Grande Plage to see the (I was told) fantastic exhibition. Jesus and Merche went up the street to watch the display from the top of the hill. I stayed with Lindsey and I like to believe we interpreted with the same colours the variety of noises which reached us.

San Roque has always been a problem with both Morales and Trearddur Bay acting as conflicting attraction points. Trearddur Bay is where I met Lindsey some 45 years ago (!) and re-met her 32 years ago. The second time was much more convincing than the first.

She is now lying with Boris looking after her. She is very quiet and does not seem troubled.

Love

---

Lindsey newsletter # 135

Biarritz, 18th of August, 1830

The sense of false security was strange. We take it in turns, worry about futile details, try to keep busy. Last evening things got a bit more complicated and it took us a while to be reassured. Then Lindsey spent an easy night and so did I.

This morning things started getting harder. Lindsey had breathing problems and we had to call the nurse in. The problem is now under control but we could have a difficult night ahead of us. And certainly the stress level has gone up a notch or two.

Love

---

Lindsey newsletter # 136

Biarritz, 20th of August, 1030

At seven in the morning, Lindsey left us.

Last evening her breathing patterns changed again; the nurse came and told us we were to expect the issue. What had been a question of days became one of hours. We nevertheless decided against staying awake all night or taking turns. For many reasons impossible to explain even here.

I slept next to her and woke several times hearing her breath, hearing for her breath. At seven I could hear it no more and woke Boris and Vikki.

I hold the belief that she didn’t suffer, that she knew we were there yet gave her the room she needed to go away quietly. Very quietly.

With all my love.

El 18 de Julio del 2016, a Lindsey, quien había estado muy cansada los previos días, fue examinada en el hospital Severance de Seul.
En lo que fue y será la peor noche de mi vida, le detectaron un glioblastoma de nivel 4.
Estando en la otra punta del mundo empecé escribiendo mail a amigos y familiares, antes de darme cuenta que tenía cosas más importantes que hacer. Por lo que empecé este blog. En teoría era cosa de “unos pocos días”. Luego…
En su forma primitiva fue un fichero único escrito de abajo hasta arriba: las entradas más recientes arriba. Las más antiguas abajo. Además, por pudor, el blog quedo cerrado y accesible solamente con una contraseña.
En agosto 2018, mientras Vikki descansa, aprovecho para desconstruir y reconstruir el blog.
Corregí únicamente los errores ortográficos más obvios y quite los apellidos y nombres de algunos personajes cuyo infame protagonismo no merece que me arriesgue a un pleito.
Porque he llegado a la conclusión de dejarlo público y abierto.
¿Porque?
¿Qué es lo que me hace abrir el blog? Es obvio que no es el deseo de cometer una obra artística. Reconozco los fallos de este blog: escrito desde el furor algunos días, el desamparo otros. Con y sin prisas. Desigual desde el primer momento.
Lo más razonable sería postergar esta publicación –o sea hacer público- hasta que alguien con más talento sepa poner las palabras encima de los momentos de amor, de odio y de desasosiego a los que intento dar vida.
Lo único –creo- que justifica dejar abierto así esta historia es el profundo amor a Lindsey que quiero dejar inscrito.
En su versión inmediata, el blog se escribió de abajo a arriba. Y lo que acabo de hacer es reconstruir la historias de arriba hacia abajo. Por falta de organización mejor, están las cosas presentadas por meses.
El blog lo escribí en inglés. Fue un error que pagué caro durante 2 años. Las emociones se escriben en Castellano mucho mejor. Por lo menos es lo que pienso. Peo en su momento era importante hablar de Lindsey en su idioma. Y hoy no tiene sentido traducir.
Para llegar a un mes en particular, es posible utilizar el siguiente índice:

• Julio 2016
• Agosto 2016
• Septiembre 2016
• Octubre 2016
• Noviembre 2016
• Diciembre 2016
• Enero 2017
• Febrero 2017
• Marzo 2017
• Abril 2017
• Mayo 2017
• Junio 2017
• Julio 2017
• August 2017
• September 2017
• Octubre 2017
• Noviembre 2017
• Diieimbre 2017
• Enero 2018
• Febrero 2018
• Marzo 2018
• Abril 2018
• Mayo 2018
• Junio 2018
• Julio 2018

Lindsey newsletter # 112

Nantes Sunday 3rd of June, 21-00

We followed the instructions and diminished the quantity of medicine Lindsey was taking. Partly, this was successful. Lindsey has been more alert, had more appetite and so forth.

But the pain has remained and we have been struggling since. We are allowed to give Lindsey morphine every 4 hours and paracetamol every 4 hours. The problem is that it is not even clear that it works.

What does work is distraction. But this is of course difficult to provide. Not really possible to engage in social activities, in long walks (or even walks). So we turn to Netflix. Finding something which will go on, have the same recurrent characters, allow to lose track yet still feel part of it.

The other big distraction was the event we were looking forward to: Jill’s birthday party (I will of course not write here which one, Jill being Lindsey’s mum). This had been a fix-point. After the great news in March I took the tickets and booked the rooms. This was to be a great occasion will all brother and sisters together. I know Lindsey was looking forward to it.

A few days ago things became complicated by some strange blood pressure patterns. Our GP came and was not impressed with my belief that we would be able to go to England on Friday (1^st). In the afternoon our oncologist phoned me and she shared his opinion.

Family also believed that this was too risky.

I didn’t share the common analysis and believed that the risk was far greater to shift the most important goalposts we had all placed.

Luckily, Boris did make the trip, talked to Lindsey from England and also sent us many pictures and videos allowing Lindsey to feel a bit part of it. It seems it was a great event with a lot of laughs and happy moments.

Now… Lindsey resting. We are to have an MRI this week and will then know more.

I will only write after this.

Love.

---

Lindsey newsletter # 113

Nantes Tuesday 5th of June, 20-30

The results were as expected. Bad.

The MRI showed that the tumour had not just grown but had attacked other areas of the brain.

The images explain the different difficulties we have had to deal with in the past few weeks.

Alas, there is very little which can be done. We will just have to deal with the future as well as we can.

I do know many have tried to phone and speak. Vikki and Boris are handling this and I am grateful. I feel I am unfair at not wanting to speak myself. It may be. I am sorry.

I will update this site as I can.

With love

---

Lindsey newsletter # 114

Nantes Thursday 7th of June, 23-15

We are trying to get organised. Boris left for Bordeaux but will be back in a few days.

Lindsey in much less pain. But also much less present.

This afternoon we pushed it a little and went out to the park. The flowers were beautiful and down by the lake we sat and had a lovely time watching the ducks. They didn’t seem that bothered with the family of river rats which were feeding in their area. In my bag I found an old biscuit left from some conference and it was used to feed the pigeons.

Just a very nice quiet moment.

---

Lindsey newsletter # 115

Nantes Sunday 10th of June, 11-00

Esto se acabó.

Gibts nicht mehr

C’est fichu

Choose the language you want, there is little difference.

Somewhere around 11 on Friday, Lindsey drifted off. Her eyes stopped focusing, she was not answering any more.

We saw our doctors at 2 and they duly noted that things had gone from bad to worse in only a few days. We stayed for further exams, for an injection of cortisone and home.

Since Friday evening Lindsey is with us and we are grouping to be all together.

She has small moments of presence and we sometimes get rewarded with a smile or a long stare.

Boris and Vikki are handling a lot of the complex logistics. They are also answering the phone or giving the phone calls.

I have decided not to speak on the phone for a while. I can’t really explain why… I just don’t feel it helps Lindsey nor me. I understand this sounds selfish.

As I write these lines Lindsey is resting, sleeping. Just very beautiful.

Love.

---

Lindsey newsletter # 116

Nantes Monday 11th of June, 15-00

Things are fractionally better.

With the arrival of new faces Lindsey first started to move her head to answer questions, then to look at people (instead of through people). Then more and more contact.

We managed to start drinking (a little) and eating (a little).

The night was quiet (or it seemed that way to me). And in the morning Lindsey managed to have her meals sitting in a chair.

More doctors and nurses.

Things seem to be under control, as far as they are concerned.

We are now six around her: Vikki, Georgie, Jill, Luisa, Boris and I.

And we are expecting Julie and Susi later on.

Love

---

Lindsey newsletter # 117

Nantes Friday 15th of June, 12-00

I am not sure I should be amazed or not.

The doctor came today and took several decisions: no more drip, no need for the nurses coming n twice a day and in a general way back to routine.

Let’s not be too enthusiastic: the general setting hasn’t changed and we still have many parameters to work on but we can say that we have ceased to be in an urgency situation.

We got there gradually.

On Tuesday we started being able to have a bit of solid food.

On Wednesday the first big change started with a morning shower. The nurses looked at me in puzzlement when I said Lindsey was ready for this. She spent then more time in her chair. In the afternoon I was looking after her while she was having a nap when I discovered that the roles were reversed: I had fallen asleep in the chair and Lindsey was trying to get up. So I decided that if she was that keen in getting up we should go for the whole game. So we brought her downstairs and into the garden (we involved four of us… she was still on the drip and walking down the stairs took time).

The evening nurse arrived and we had to go back up… but once she had finished Lindsey wanted to go down and she was able to take part in the evening meal with all of us. In the picture you can see how pleased she was to dig into the tuna!

Yesterday was again that little bit better and this morning it was possible to reduce many of the complex bits and pieces we had introduced.

At this point one question should be raised: did we panic unnecessarily on Friday? I think the answer is negative and on Friday the doctors were also working on a worst case scenario. I remember the discussions we had with them, their hesitations, their suggestions and there is little room for doubt that things were as grim as they looked.

The perspective is now much more serene.

Love

---

Lindsey newsletter # 118

Nantes Tuesday 19th of June, 22-00

Time flies.

Good news and more good news. Each day a little better. Lindsey with a splendid appetite (possibly too good). The doctors quite surprised.

During the week end the sense of urgency decreased and we have been able to « return » to a sense of normality. Some nice images to reflect this very nice (relaxing?) atmosphere.

---

Lindsey newsletter # 119

Nantes Wednesday 27th of June, 23-00

As Lindsey tries to sleep in some really hot temperatures, and I have no hope of doing the same until some cooler air gets into the room further in the night, I have a little time to write.

Time which there is not.

So much to do.

Right now we are 3 and we can’t really stop. Vikki goes into work in the morning and I go in the afternoon.

Sometimes, in the morning, I find a bit of time to write an email, check a document.

The strange stable situation remains. Lindsey is strong in many manners. She eats a lot, too much, all the time, in a way which has caused Vikki to nickname her “petit hamster”.

The appetite can be due to cortisone, the illness itself or a combination of both.

During the day she is not able to do much. In part because there is not much Lindsey can process, in part because it is so hot.

Last week-end, Lindsey’s brother Rick came for a couple of nights.

We spent some nice moments. Vikki had the good idea to ask the Hospital to lend us a wheelchair and we decided on Saturday to go on an expedition into Nantes. The wheelchair doesn’t oblige Lindsey to stay seated, but it does give us a certain amount of freeness to move around. Up to a certain point. In one afternoon we understood how badly the town catered for people who needed wheelchairs. Crossing roads was perilous and when we needed a public bathroom there was none to be found… And we were in a touristic zone. Nantes, you should do better!

This week we have two appointments with the oncologist. One is usually more than enough to bring the stress level up, so two is just nerve shattering.

The first (yesterday) went well: Vikki and I were able to talk all of things over, understand what the different options were at this point. Boris arrives tomorrow and will be with us on Friday for the second one where we will have to discuss the best treatment.

Lindsey newsletter # 109
El Campello Thursday 3rd of May, 16-00

Everyone is enjoying the afternoon siesta… In el Campello, half way between Alicante and the (in)famous Benidorm.

We flew in yesterday. Not that easy with Lindsey very tired. She also suffered (as we were driving to the airport) from a nasty tummy failure. The sort of thing you don’t write about in a blog. But also the sort of nuisance which makes flying even more complicated.

Anyhow, we did get here and Lindsey was of course delighted to meet up with her great friend Luisa. Even if not much has happened, just getting here gave us a sense of achievement.

I managed to get my first swims of 2018; first in the swimming pool and this morning in the sea.

For lunch today, Arroz a Banda. No, this is not a rice band. The recipe involves cooking together a great number of fish which are then thrown away. What matters is the broth which is then used to cook the rice.

We did have a walk in el Campello where we lived some 16 years ago (help!). And we argued about which window corresponded to the flat we rented. The flat gives on the beach. Every morning we could see the sun rising. It was very spectacular.

Later this afternoon a number of friends are coming round. I am not sure how and if Lindsey is going to cope. She is very weak and we really haven’t found the right medicine to help her cope with the headaches.

---

Lindsey newsletter # 110
Nantes Saturday 19th of May, 16-00

So, so…

Very so, so…

After a few great days in Campello we flew back to Nantes. It had been lovely but also very difficult, with Lindsey suffering from headaches a great part of the time.

I had little time to rest and left for Brussels on Monday (7^th) morning.

This started a particular period of the year, which you could call “the bridges”. This consists in a series of days off. This year we had the 1^st of May, then the 8^th (end of WW2), followed by the 10^th (jeudi de l’Ascension) and ending with Monday the 21^st. When the festive days are on Tuesdays or Thursdays it is a well established habit of taking the corresponding Monday or Friday off.

In practice it means that one out of two emails receives an OOO answer.

It means that work is very difficult: no one seems to be taking the same bridges, so the person who is not taking time off will try to get some project moving, with little success. And if you do take some days off you find that enough people have been working to fill your letterbox up.

Medically it can be complicated too because if there is a difficult moment to deal with, it may be impossible to get medical attention.

Lindsey was scheduled for a Chimio on the 8^th, but the pain (headaches) was proving too exhausting and the doctor decided to allow her to rest for one week.

I did take one of the bridges: Jacques and Thierry, with whom we have been barging in the south of England for the past few years, came to visit on the 9th. I then went with them to a cottage by the sea for a couple of days, essentially to talk, walk and play games.

Boris, Vikki, Lali and Lindsey came on the Thursday and we all had a lovely meal out.

Following their departure a few days rest. But the medical agenda was heavy.

On Monday I spoke with the Oncologist and we decided to change painkillers.

On Tuesday we saw another specialist about the shoulder which had been an absolute nuisance around February. She thinks (now) that the issue is neurologic, meaning that the brain is sending pain signals which don’t necessary correspond to anything physiological. On the other hand (some good news!) the blood test was extremely positive.

On Wednesday we had the Chimio. Exhausting of course.

On Thursday very little activity. We are really trying to find the best rhythm for the pain-killers. And I am not sure we are doing very well.

On Friday we went to see our local doctor to check things before the “pont”. We agreed that the morale was becoming a question of concern. Anti-depressors would probably be better suited but seem to take 3 weeks to kick in, so we went for anxiolytics. Starting now.

On Saturday (today) I went to the market. When I came back Lali told me that Lindsey had tried to get up but was very wobbly (and thus nearly fell over). She did manage to get up and sit and watch the royal wedding. But the mixture of medicine, the overall exhaustion and a very low morale are making her very lethargic.

She is now sleeping a bit. I hope she will be better later and that the arrival of Luis and Corinne will help a bit.

---

Lindsey newsletter # 111
Nantes Tuesday 22nd of May, 17-30

Luckily, it was only an overdose.

Admittedly, that doesn’t make a good start for today’s entry. But there are cases where the only way to lower the tension is by saying something slightly provocative.

Let’s retrace the events of the past 2 days.

The so, so from Saturday degenerated into a very worrying situation. On Sunday and Monday Lindsey got up for a maximum of 2 hours each day. And getting up involved a team of us helping her to do everything, from getting dressed to feeding. She just seemed exhausted all the time. When walking -if we can call that walking- her arms would just fall and there was no strength anywhere.

Yes, the anxiolytics were working and she was less pessimistic, but just because she had hardly any reaction to anything.

Today we had an appointment at the hospital with the pain specialist. Or so I thought. Because when we got there and I showed the paper it was clear that the appointment was for tomorrow. But we were there and I managed to see a different doctor (who had already examined Lindsey a month ago). And he was not impressed when I gave him the list of all the items she had been prescribed.

It seems that most of them have a similar effect: to put you to sleep. So if you have 4 different pills all with the same effect (sometimes a side effect, sometimes not) the result follows.

In this case it would seem that the worse one was the last one, prescribed on Friday afternoon and which we started on Saturday: the anxiolytics.

So we have come home with a « negative prescription », i.e. a list of products that have to be taken off at various rhythms.

Oh, and of course, there is also a new one.

Lindsey newsletter # 108
Nantes Saturday 28th of April, 16-00

Let me first thank the three persons who actually asked me to update this blog.

Admittedly I had excuses for taking a whole month to write this entry, but I have to say the main reason was the “interstellar” one. In that film there is this moment where the main character (an astronaut) keeps sending stuff back to earth without being sure anyone is receiving his messages. In fact, he even has the doubt that the earth exists…

Anyhow. I should not have stopped writing. I am sorry.

The first reason for not writing was that the MRI of the 23rd of March proved me wrong. Wonderfully wrong. The results were good. It seemed that the efforts were paying off and that the chimio was working. So we celebrated and tried to enjoy things again. And I stupidly didn’t know how to write it out.

Enjoyment didn’t really last. On 26th of March Lindsey had treatment and this started to hurt more than the previous sessions. It was my birthday and I spent most of the day at hospital.

Just after this I had to take a trip to the Netherlands for a PhD. It was nice to move. More importantly, being somewhere else is the only way not to believe my job is completely absurd. In the Netherlands the PhD defences follow a very strict ritual and the members of the jury are to dress up.

I took another trip in April, this time to Windsor. The meeting took place in Cumberland Lodge. It was also an occasion to meet up with Phil and Georgie.

A third trip brought me closer, to Paris. As the meeting in the ministry finished early, I went to Notre-Dame where I found the chapel where (a long time ago) I was baptized. At least Lali thinks it was there.

As I wrote above, the treatment is working. But it is coming with a price: Lindsey is very tired, spends many hours sleeping. She also has headaches and I seem to be trying different combinations of medicines every two weeks. We still haven’t found the right cocktail.

One of the few things Lindsey does enjoy is food. So we try to prepare nice things every week-end. The market here is the place to find fresh fish. But whereas we used to be able to go to the market together, this has not been possible for quite a while.

Boris and Vikki have been having exciting professional moments: Vikki has had several interviews, with one of them leading to a job offer: she starts on Monday. And Boris’ acting seems to be working. He now posts pictures working with people who are actually known outside Bordeaux!

A positive effect of the great results of the MRI are that we have been able to make plans again. And we are flying to Alicante next Wednesday. I just hope Lindsey will be better than right now. To enjoy the trip, but also to be able to get past customs!

Lindsey newsletter # 106
Nantes, Monday 12th March, 15-00.

Sitting in the hospital room. Lindsey is resting. We arrived at 8-30 and still have 2 hours to go.

I had hoped it would be shorter because the blood tests on Saturday had been better than at previous similar moments, but the count wasn’t right and we had to do another blood test. The result of these came in at 10 and were positive. And then for two hours nothing happened until the first drug was delivered. I wasn’t very happy. Obviously things need to be organised but this seemed to me to be a pointless waste of time and just makes the whole thing more exhausting.

The past two weeks have been simple but also very slow. During the first week, rest, with Lali there to help. Not much energy. The best has been the food: I have now found a fish-shop who has fresh Tuna from the Atlantic and this is just so good!

Then we drove down to Biarritz so spend a week there. The week seemed to vanish into noting with very little time to even rest. The weather was not as nice as we hoped, so we did most of our walks down the bottom, on the “corniche”. The views are spectacular and the fresh sea breeze is so stimulating… when the breeze is not a gale.

On Thursday Jesus and Merche came from Toro to visit. We didn’t do very much but it was great to have them around, enjoy long talks and introduce them to the pleasures of watching winter rugby on television.

Lali has come back with us to help us this week: I have to go to Paris (to teach MPs how to code!) so she will be able to be with Lindsey.

The word I hesitate to employ is “boring”. It may sound wrong when so much is at stake. But there is this feeling that you can’t make plans for something exciting, that you depend on magic numbers coming from blood samples and MRIs, that any simple plan will lead to nothing if the inevitable tiredness creeps in.

Vikki gets back at the end of the week. A bit of vitality may help.

---

Lindsey newsletter # 107
Nantes Thursday 22nd of March, 23-00

Everything is now quiet. Lindsey has gone to bed and so have Georgie (now visiting) and Vikki (who got back last week from La Réunion island).

Tomorrow we have a « complicated day ». We have an MRI followed by a meeting with the oncologist.

Each one of these is an ordeal. For possibly 2 weeks before we start worrying. Lindsey at first doesn’t perhaps take in all the implications but it soon becomes clear. Because it is impossible to answer to her numerous questions anything else than « we will be getting an answer next week ».

What can I predict?

I am not sure. On one hand I have been wrong most of the times before. I have entered into the Doctor’s office with the certitude that the news would be bad and have come out crying of joy and kicking myself for being so pessimistic.

On the other hand, it is necessary to go in with little hope in order to cope with some new complication which may require decisions to be made.

From a more clinical perspective, there are positive signs and negative ones. Lindsey can be much more muddly, has a bit less strength and tends to need more hours sleep. Again on the other hand the treatment is demanding, there are a number of other possible explanations and the differences may not be as clear as I state.

But the stress must end, for everyone’s state of mind. Tomorrow we will know.

Lindsey newsletter # 103
Nantes, Sunday 4th February, 23-00.

Silence. Only Lindsey and I. And Lindsey is now sleeping.

Vikki has left for a five week tour of La Réunion island this afternoon. Jill had left this morning.

Oh. Of course we miss them already. But there is something nice in just being the two of us for once.

But let’s go back.

On Tuesday 23rd a blood analysis took place. In the evening when I saw the results it was clear that something was wrong. We had done an analysis on Friday and the white blood cells had gone right down since. And on Wednesday when Boris Lindsey and I went to the hospital this was confirmed. She needed a count of 1000 for the treatment to be given. And she was at 820. So all we could do was go back home and wait for them to go up.

On Saturday we had another analysis and they were even lower. The rest of the week end was gloomy. All I could do is prepare Lindsey for the possible further delay.

On Monday afternoon we went to the hospital and they checked there. After waiting for quite a long time they found that the count had risen well above the 2000 mark so the different products could be given. This meant being in the hospital till nearly 10 at night. By which time I was already in London.

I had to go to London for a project meeting; The plane landed in Luton where I discovered the fish-tank. This is the large room in which all the planes poor their passengers who then are dispatched to different queues and eventually are able to get out. I reached two conclusions: the first was that there was something worse than Roissy in Europe. The second is that this was clearly potty training for the English to get used to what life is going to be after brexit.

The second round of treatment is not as fun as the first. We are not having those spectacular days which impressed upon me so strongly. Lindsey is tired and quite depressed. Even if she was told she would not lose her hair, in fact these seem to be falling by patches.

So now for a quiet week. I will try to shuffle through my (far too many) lectures and spend as much time at home as possible. And I am sure that by the end of the week we will be happy to have visitors again!

---

Lindsey newsletter # 104
Nantes, Sunday 18th February, 15-00.

2 weeks. One cycle. More of the same. Only worse.

The fist week (which was the second of the cycle) was very gentle. Only Lindsey and I. I managed to work from home quite a bit and made sure I had one of Mélissandre, Michèle, Marie-Pierre, Justine, Nawel around when I was out. Lindsey was mostly tired with some good moments too, allowing her then to go out or do things.

On Saturday we had the feared blood test. And it gave the wrong result again. The white blood cells were too low, meaning that the Monday routine would be more complicated.

On Sunday (11th) Julie (Lindsey’s sister) came to visit. Nice to have some positive energy around.

On Monday we went to the hospital for the treatment. As expected the Doctor asked for an extra blood analysis which was positive. The treatment could take place but I had to go and teach. Julie and Lindsey had to get back with a taxi.

Julie left on Thursday.

One new problem has appeared. A couple of times, Lindsey has had severe nose bleeding episodes. The first time was in the bath, so was reasonably easy to sort out. The second time took place at Denise’s fish stall in Talensac market. This can happen and sometimes a cauterisation is proposed to avoid the incident repeating itself. Sorting this one out will be one of the issues of next week.

Lindsey’s arm is also a source of bother and pain. We do go and see a physiotherapist, but I am not very convinced, and don’t have any better alternative, sadly.

When Lindsey feels a bit better she phones family and friends to reassure them. Which is very sweet.

Love

---

Lindsey newsletter # 105
Nantes, Monday 26th February, 18-00.

Lindsey sitting in the chair after a long day in the hospital. We had round 4 of the treatment today. As before, the blood analysis from Saturday was not good enough so we had to go through another analysis. The results gave the all clear we needed. But it meant spending a lot of time there.

The week had gone well: Boris arrived on Monday, Lali on Tuesday. Lindsey has been feeling well sometimes, less at other moments. One problem has been the nose bleeding. This happened until Tuesday. Then it didn’t.

On Friday the SUPREs arrived. Lindsey met up with them on Saturday morning, just outside the market.

The SUPREs all come from Alicante and are Lindsey’s great friends from when we spend one year there, in 2001-2002.

Lindsey newsletter # 101
Nantes, Tuesday 9th January, 11-30.

I am sitting in a hospital room with Lindsey resting as she is taking in her first session of chimio.

We arrived at 8-20 this morning and I believe we will be here till 2.

As I write these lines I realize that this is the second edition of post #101. I had filled the blog in last week but somehow didn’t save it…

After the week in Bergerac we drove back to Nantes, stopping on the way to see Lali’s old friend Angel. Angel is in a nursing home and visibly with few visitors so he was very happy to see us. Lindsey and I have also met Angel many times over the years and he was very moved in seeing Lindsey.

The end of year and entering 2018 went well with many messages from friends and family.

On the second of January the serious things started. On that day we had no less than 4 medical appointments. Sorting out the shoulder, talking with the oncologist and preparing for the treatment which was to start on the 9^th. Before that, on the 8^th, a small surgery took place to introduce a catheter and make things easier later.

And now it has started. For the moment the spirits are high; let’s hope it stays that way. Of course, the next few days are going to be where we will see how well Lindsey supports it.

---

Lindsey newsletter # 102
Nantes, Sunday 21st January, 12-30.

In the last entry I explained that Lindsey was being given her first session of treatment. We then went home expecting all sorts of nasty things would occur. But they didn’t. In fact, during the first few days Lindsey was in top shape and able to do many things.

Of course, this couldn’t go on as well all the time and little by little there was the extra tiredness, the sensation that drug and disease were fighting it out.

To keep us happy we had the new year tournament which started in Tokyo. I am talking about Sumo, of course. Lindsey was disappointed to see that Hakuho, the greatest Yokozuna of modern times, have to retire after 4 says due to a toe injury.

Lindsey is now resting. Till Wednesday where she goes on to round two.

Lindsey newsletter # 95
Nantes, Sunday 3rd December, 16-30.

I guess that for many months the blog was about Lindsey, about me. It was great to keep you informed of the progress. The hard moments too.

But the original point to the blog was to provide family and friends with some information. When we were in Korea it was difficult to answer to each. Quite logically other sources of information are used and it can be quite annoying not to know how a loved one is faring.

So blogging was about sharing, for better and for worse. I believe the reasons for writing from that perspective are present now.

As Lindsey was doing better, the blog was about giving some news, showing some encouraging pictures.

After our (great) trip to Sardinia, things went well for a while. Then little by little they didn’t. Small things. The siestas got longer, the walking was not as strong. Of course, November took its usual toll and Lindsey wasn’t the only one to not have the usual stamina.

A few days ago a pain in the right shoulder appeared. The local GP put is down to tendinitis and suggested a number of things including pain killers, physio, and a radiography. The monthly blood analyses were good so that reassured me for a while. A little.

Ups and downs. Able to have a long walk to the market but difficulties in explaining what vegetable she wanted; able to go out to buy the stamps for the Christmas cards but not to sign them.

At this point it is probably too early to worry (too much). In the next few days we well be going to the hospital to try to get a more precise idea of what is happening.

And I will blog.

Love

---

Lindsey newsletter # 96
Nantes, Friday 8th December, 15-30.

Better days… Vikki and Fabien stayed with us from Monday to Thursday. On Monday Lindsey went to pottery where she had a nice time and received help and encouragement from her friends.

The next few days were spent resting, preparing for Christmas and trying to feel better. In many ways this is the case, even if the shoulder is still an absolute nuisance.

I am having huge problems trying to get the medical organisation going. Every time I phone about the shoulder the secretary of whoever I get hold off tells me that they have decided not to take in new patients till after Christmas. And when I get hold of the hospital it’s more or less the same: impossible to get hold of an MRI slot till after Christmas. I am not sure what the next move can be…

But as I wrote before, luckily, Lindsey is a bit better and has become even better when on Wednesday night Luisa and Jose arrived for a few days, followed by Boris on Thursday.

Quite a party!

---

Lindsey newsletter # 97
Nantes, Monday 11th December, 6-30.

A lovely week end.

On Friday afternoon we went out to the traditional Marché de Noël. Traditional means that we have now got used to these huts serving over-priced goods of no quality at all. But what matters is the spirit, of course.

On Saturday we went off to Saint-Nazaire. In the morning a nice walk in La Brière, a zone of marshes. A meal in a local restaurant. In the afternoon we visited the Submarine base that had been built by the Germans during WW2. A very imposing building.

On Sunday Luisa and Jose had to start their long trip back. A little later Boris took a bus to Bordeaux.

Lindsey with much higher spirits but still with the tendinitis. We have been able to get an appointment for Tuesday.

---

Lindsey newsletter # 98
Nantes, Wednesday 20th December, 12-30.

Yesterday we saw the oncologist. We were only due in January, but a number of observed symptoms had led me to ask for an earlier appointment. An MRI had taken place a few days ago.

And as expected the results were not good. The tumour has decided to come back. Too close to where the original one treated before for operations or radiotherapy to be possible. So it will be chimio. Starting in January. The spirits are obviously quite gloomy. For Vikki and I perhaps less so because we were seeing the signs and were expecting this. But Lindsey was very demoralized.

Her mood is very confused. To add to the negative side, she still has atrocious pains in her shoulder. The diagnosis is complicated to make, the candidates were tendinitis and capsulitis. But the results of the MRI could mean that it is as much the result of the tumour as a physical issue with the shoulder. In practice it can mean her waking up 3 or 4 times a night, in pain, with the necessity to reshuffle the pillows and see if I can give her or not any pain-killers.

On the good side she spent 3 hours at the hairdresser and she looks stunning. Photographs will follow. I once again understood that I had chosen the wrong profession…

We will be going down to Bergerac on Friday for a week to spend Christmas. Rest and happy faces are needed!

Love

---

Lindsey newsletter # 99
Nantes, Monday 25th December, 23-30.

Happy Christmas!

We are spending Christmas in the Dordogne region. Some 10 km North of Bergerac. We travelled on Friday, badly needing to get out of Nantes. We picked Boris up en route and got to this house, lying in a farm compound. The farm produces duck products, specially foie gras and magrets.

Lindsey is understandably very upset. The pain in her shoulder is of course not helping. She is spending a long time sleeping and it is being very difficult to get her to push herself.

Luckily she is enjoying her food, as we are all.

On Saturday we went to Bergerac market where we filled up on local products. We also walked around Bergerac which is a lovely city.

On Sunday Susi, Ramon, Aitana and Mateo arrived. They had stopped in Biarritz to pick Lali up.

And today Luis, Corinne and Diego got here from Bordeaux, in time to share the turkey.

We got an enormous amount of presents. Much more than we had been able to get ourselves. Thank you everyone…

And Happy Christmas!

---

Lindsey newsletter # 100
Nantes, Friday 29th December, 23-30.

Number 100… I am not sure what to think. Already? Only?

Lindsey is sitting watching the rest of the blog… those wonderful 6 months in Japan. A wide smile on her face shows me she is with happy memories. I am waiting for the rain to stop to go and try my Christmas running presents.

We have used the past few days to rest, visit a bit the beautiful Dordogne region. And eat. A tremendous amount. The basis is duck which is cooked in a variety of ways. Most important part is the fat which is used to cook all the non-duck items.

Tomorrow we go back to Nantes.