Time for an update. I'm still basically in bed but feeling quite well. The delicate balance of eating and drinking just a little bit to avoid stomach problems is still intact. I have not been outside since January, but am eagerly waiting and hoping for some nice sunny weather to lure me outside in the near future! I go up and down the stairs several times a day, which is quite necessary to get my lazy weak legs into action. And I have started to do some morning excersises, including some qigong. Should do more of that, since I know and feel it does me a lot of good! I still have a nurse coming every morning to help me with the basics of washing myself. They have little to do, but it's very nice to be pampered. They rub 'wild rose' scented oil on my dry skin, give me a foot bath after the washing, and then tug me in bed with a warm water bottle... Very comfortable! Immediately after that I start playing with my lap-top. Hoping for some nice messages to come in. I must say I have been so well cared for by all my friends, who keep sending me post, mail, flowers, presents... It has been an endless stream of attentions. Thank you all for this!!!!!!
Recently I have started to work a little bit on my 'business mail', and I have to arrange my tax papers. This is usually very dull work, but once done, it can give quite a bit of satisfaction. These kind of things have been neglected since I started to be ill in 2010... So just imagine the piles of paperwork awaiting my attention... Umph!
Should listen to music more. Some friends have been sending me nice links to their favourite music videos or comic shows. Very entertaining! Do go on doing this, please! I also have an account on weibo now (not on facebook yet, I can look into Frank's account when I want to, but it's a bit much!). On weibo (the Chinese equivalent of facebook) I only have 14 'friends', wich makes it a fairly quiet corner to linger. But it's very good for my Chinese! I like it a lot.
So bye for now dear friends, do drop me a line if you feel like it !

Another long silence should finally be broken. Better sit down for this one, as it's not really the lightest of news. At the beginning of January I was taken to hospital again. My digestive system seemed to refuse working. My belly was swelling nastilly and painfully. The doctors came to the conclusion that I could now be declared 'terminal'. Nothing much could be done any more. No operations, no chemo - this to my great relief I must say! I could go home and spend my 'last weeks' in as much comfort as my home surroundings and some nurses could bring me. Since then, I am home again, with a nurse coming once a day in the morning, a bed that can be manipulated up and down and to all directions in between (great fun for the kids of course!). 

The good news is, that my bowels started working again after some days, and I am now keeping a precarious balance by eating the lightest possible food, in very small portioins, spread over the hours of the day. I'm losing weight all the same (I only weighed some 43 kilos yesterday...) 

So we've moved to a new phase. The strange thing is that I feel much happier now, because I now know what's going to happen in the not-too-far future. It means I can concentrate and focus on the things I want to be arranged and done before I go. Before this period, I felt as if I was in a kind of vacuum, in a 'waiting room', and nothing concrete came out of my hands. That was quite frustrating, but probably also due to the lack of energy caused by these ever-ongoing chemo treatments. So I'm very happy I'm rid of that, and my hair is finally allowed to grow again. (Stil a very short, but healthy looking fur now.) Frank and I have started to work out my funeral, and it feels like just another 'nice Chime project' (don't laugh, it's really like that!) We are brainstorming about nice live music we want to have, contacting people, getting extremely warm reactions...

One very nice and unexpected project that grew out of this was caused by a musician I once saw on the chanals in Amsterdam. He sails in a tiny boat with a hand-driven street organ, playing horn, trumpet or conch with his other hand, and manipulating his little boat in circles at the same time. He is extremely musical, and has a beautiful repertoire of mainly classical, but also some 'classic' old-timers, jazzy, world and self-made music. I was so moved by his performance that I always kept him in my heart. As we were thinking of live music for the funeral, he was one of the first that came to my mind. Frank contacted him, and he was deeply moved by the request. 'But', he wrote, 'what I'd love to do even more is to give her a serenade while she's stilll alive! YESS! I yelled when I heard the proposition. That's what we're goiing to do! We'll celebrate life with lots of friends, neighbours, children from Nuria's school and last but not least: my parents! I had thought of arranging a 'music boat serenade' for their birthdays last year but, as you may remember from an earlier story on my blog, they did not want to celebrate anything, in fear of stress and hassle. So this was THE oppotunity to let them witness the lovelyness of this musical performance without them being the focus of attention. So last week Saturday we had this wonderful occasion in the chanal in front of our house. It was magic, and this whole week we are still beaming from the aftermath. Every day, I'm receiving flowers, cards, and other expressions of thankfullness from the people that participated. Perfect BLISS. Enjoy the pictures:

Here he comes...

The night before coming to Leiden, Reinier prepared a version of the Chinese folk song Molihua (Jasmine Flower) for me. He also made a version on music box (attached to an old lute) which he presented to me via Elias and Nuria (picture on the left). 

I'd love to add some video, but will need some time to find out how to do that...


(if you would like to know more about the 'music boat' artist, he's called Reinier Sijpkens, and this is his website: www.musicboat.nl)

Tracing the Romans in Germany

Ha, time for a nice story. During the autumn holidays we've been away for a few days with the whole family. For the first time since... ah, I can't even remember! We have traced the Romans in and near the Teutoburger Wald, where they were beaten by the 'Germans' in the year 9 A.D. We saw the big bronze Hermann statue, and the Externsteine, mysterious rocks sticking out in the wooded landscape. When I saw those steep rocks my first thought was: I'm going to skip this one... But then I saw even some old grandpas climbing the stairs, so I went and climbed them all! Not to my regret: they gave a beautiful view on the forested hills and lake. After visiting the Hermann statue, we had great fun in a 'climbing-playground' in the forest nearby. This seems to be a fashion in German forests (also growing in Holland): they install all kinds of ropes and pieces of wood to climb on between the trees. Usually it's quite expensive to participate (and you need official gear and supervision), but we were lucky: the ticket office wasn't open, there were no fences, and part of the climbing materials were hung very near the ground, so smaller children (and untrained grown-ups, ahem ahem) could play at their own 'level'. We surprised ourselves by all taking turns at all those installations, and felt like naughty monkeys. (It must have been a very well-kept playground: the ropes didn't even collapse under Frank's weight!) This unexpected event was the biggest fun-experience of our short holiday.
Now back to the Romans: only recently archaeologists found evidence that the above-mentioned battle actually took place quite a bit further north. So we drove there to visit the site of the excavations, and see a brandnew museum where they had thought of all kinds of playful and modern ways to tell (especially children) all about those events. On the last two days we went to Osnabrück and Münster. The weather was mostly mild and even sunny.
To my surprise and relief, I wasn't exhausted from the trip. It even seemed to give me some energy!
Should do this more often!

Alas, no Aberdeen for me

Today I decided not to go to Aberdeen after all. I'm afraid the chemo is taking a heavier toll on me than I dared to admit. This Sunday we had a very nice birthday party for Nuria with 10 children going by train to Amsterdam, taking a tiny ferry grip across the IJ waters behind the railway sation, and then walking to the Muziekgebouw aan 't IJ, a wonderful concert hall offering mainily contemporary, alternative and non-western music (in the past few years, we cooperated with them on several Chinese music series). There is a seperate floor there with a 'sound-playground' where they conduct workshops for children from seven up, who can experiment with all kinds of newly invented music machines. For instance there's a kind of huge mushroom with all kinds of coloured patches. Each patch you touch or tap produces a different sound. A group of children are asked to stand around the machine and invent a soundscape together. There's a floor with light patches that give different sounds when you step or stamp on them, so you can dance your own composition. Then there are computers on which you can draw sounds (!), or compose pieces of music. It was a great success. But of course, on the way back I was pretty exhausted... I had another rather full day yesterday and woke up feeling sick and tired. So even though my acupuncturist had kind of given me the green light (apprehensively), I realized my body simply isn't up to travelling at the moment.
Ah, how I'll miss all those friends - an the Scottish music!!! I'm going to try to reach some friends through skype these days. If any of you happens to be on the conference with a skype-connected laptop, or if you're at home (or at work..) feeling like a small chat: the skype account name of my laptop is frankchime. Hope to see you there!

Another month has passed, how time flies! Nuria started school again on the 15th of August. Feeling quite energetic, I enthusiastically brought her to school those first days. She's happy with her new teacher, and skipping a class was the right choice for her. Two other boys also hopped over to grade six, so she's not the only one. And she's in a class with grade 5 and 6 kids together, which makes the pass-over much less harsh. A week later, Elias started middle school. He has chosen a classical upbringing in a modern jacket: grammar school in a brandnew school building, with possibilities for computer classes and the like. He came home the first week with enthusiastic outcries like 'mom, this school's really super-cool!', and on Friday he sighed 'It's almost a pity that there will be no classes tomorrow...' Of course after two weeks, he's getting a bit apprehensive about all the homework, but overall speaking he likes the place, the teachers, and especially his new schoolmates. He brought home two new friends at the end of the first week. An absolute novelty! (During his entire primary schooltime, we had to push and pull to get him to play with classmates...) It's great to see both our children grow and mature like this!
As for myself, I overdid it a bit in those first weeks. I felt so good that I ran around like a mad cow let loose in the meadows in spring... My acupuncturist started to notice that I was tired, and gave me very earnest advice to ease off. After some time, I realised he was right. So I wrote the word 'rest' in my agenda on every day of the week, and undertook some 'serious sleeping'.
Last Wednesday I had another bout of chemo. The oncologist could not give me very encouraging news: the blood tests show no signs of improvement, and I might have to change to a different treatment next month if the CT scans give reason for that. But I'm not going to let my mood go down by some bloody blood tests! I still feel pretty well, so that's what I concentrate on. Just a bit sick from the chemo, but that usually lasts a week at the most. In my 'energetic period' I took the bold step to register for ESEM in Aberdeen (the annual European Seminar in Ethnomusicology, which Frank and I have been attending ever since the late eighties, and of which we took over a lot for our Chime conference format. It's a circle of friends, and I have been missing them a lot since I had to miss the last two conferences.) I HOPE we'll be able to join, but I realize that it might not be, if I don't feel fit enough. I'll simply let my acupuncturist decide next week.

During the dark summer months of which I spent most time in hospital, there was another very special person who 'fell into my lap' just at the right time. This was Peggy Huddleston, a researcher from Harvard University, who happened to be visiting a friend of ours in Amsterdam for a few days. Peggy has done groundbreaking research in the field of mental preparation for surgery, which makes patients heal faster and feel much better. She's also a healing practitioner. I had not heard of her (and knew nothing about 'healing'), but when this friend of ours proposed to let her come and have a session at my home I responded with a thankful YES! She sat next to my bed for more than two hours and we had a wonderful talk and unforgettable experience together. She gave me a tape with a relaxing text, during the second half of which she leads me to heal myself by thinking of my loved ones, and thinking of / experiencing some of the things she taught me during the session. I meditate with the help of this tape twice a day. There are times when the feeling is very strong, and other times when I'm a bit distracted. The best of times are... the weekly acupuncture sessions! When I lie down there relaxing with the needles, I run the tape in my head, at my own tempo, and somehow, the tears start floating automatically. These tears are like dew, like a refreshing shower that cleans and rejuvenates. I'm extremely thankful to both Peggy and doctor Tjong who opened this door for me. (For more information on doctor Tjong, see www.tjongtjintai.com. For info on Peggy's work, see www.healfaster.com)

This has been an awfully long silence. With reason. I have been in hospital for almost a month, and was not well. I simply had zero batteries, my body was a wreck. Luckily enough I remained mentally as strong as a redwood tree. But it was scary to see my body deteriorate. I felt permanently sick, so food and drink were causing me a lot of trouble. My weight slowly dropped to an all-time low of 47 kilos, and I stayed in bed so often that walking became difficult. I saw my oncologist on the 1st of August while sitting in a wheelchair, pushed by Frank. She told me I had to get back to chemo, or give up. I felt rather hopeless, since at that moment I had the idea my body would not be able to stand another round of chemotherapy.

Mum's home again!

But then a miracle happened. I saw a 70-year-old Chinese doctor on the 2nd of August. He treated me with some needles, and wrote out a receipe with lots of Chinese herbs, roots and other goodies from nature. The first time I drank the broth, I could suddenly eat a full meal again! My nausea vanished like snow under the sun, and I could stop taking pain killers and anti-nausea pills the next day. Since then, I felt my body going uphill like Tom Smallthumb wearing seven-miles boots! Yesterday I weighed 51 and a half kilos, my face has a normal colour again (for more than a month I had looked like a ghost with hollow cheeks). I took my chemo two days ago without any trouble. I went through it singing! I can walk around again and even went into town for a whole afternoon with Nuria last Tuesday!

There was one friend who sent me such a lovely 'present' that I'd like to share it with you. It was David Hughes, researcher of Japanese folk song, and long-time friend since the 1980s. To give me something to cheer me up, he sent me a link, or actually two links with a song he had written and sung himself during a housewarming party recently. It was this song that gave me that little bit of energy to get through my difficult hospital period last month. He gave me permission to put the links on my blog. Enjoy!
www.youtube.com/watch?v=9vmvrj_pIhM
www.youtube.com/watch?v=1s-r_VhBFOE

Today is not only the 90th birthday of the Chinese communist party, it's also my 49th birthday. And boy, do I have something to celebrate. Two days ago I was saved by surgeons who performed an extremely urgent operation: my intestines were on the brink of bursting. I'm extremely thankful that the operation was successful, and that I'm still alive!

The past few weeks have been difficult, even critical, and I know that there's another difficult period for me ahead, but at this moment I mainly feel great relief. The operation came in the middle of a new round of chemotherapy, not exactly ideal. It remains to be seen how I will get back on my feet. But it seems imperative now to live by the day, by the hour even, and to tread in small, careful steps! I do feel very sad about having to miss yet another Chime conference, organized by our good friend Szhr Ee and her colleagues in London...

Happy to eat my first (and only)
birthday biscuit after a week of
vomiting and constant nausea

The nurse came in this morning with clourful paper guirlandes and lanterns to cheer up my hospital room. At 11 o'clock, my parents came over. They just passed their 80th and 83rd birthday last month, but hadn't celebrated that in fear of too much stress and hassle. So now I finally had the opportunity to make up for that. I sang a song for them and together we celebrated the occasion that the three of us today reached the respectable age of 212!