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 (1st). 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.