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
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
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.
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
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.
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
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!