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
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.
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
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
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
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