November 26th, 09 – Jake 8(2)

Dear friends,

A brief update about Jake’s and our progress in the last month is well overdue. He has been at home for most of the past month now after our scare of late October.

Jake’s chemotherapy regime has marched on with the expected ups and downs all these different poisons produce. He was on a week’s steroids last week which probably has the worst impact on his whole system.  He has had a miserable time been feeling dog-tired, sick, depressed, disoriented and ‘spaced out’ and with aching hip bones. His hair has opted out for the second time and we are getting good at judging how much blood transfusion he needs by the pallour of his face. Thank you if you are one of the indirect donors.

Now he’s off them the music has flooded the house again.  Sadly he has many more ‘pulses’ (we have such an interesting new vocabulary) of the same, absolutely necessary, steroids to come, so we have to steel ourselves for this again in 3 weeks time.  The current batch of chemotherapy is less disruptive, but this changes all the time. His spinal fluid and his bone marrow have to be tested by a medieval and painful procedure every few weeks. The good news is that he is responding well  and still in complete remission, although this is reliant on continued treatment for 3 years.

His music is still providing the experience which both focuses and transforms him and us. He is working hard at playing the astonishing difficult  Goldberg Variations of J S Bach (those who know how might spotify it played by Glen Gould if you like) for a years project and also has accepted his first gig (flute played by his friend Tom and harpsichord by him) next weekend at a private function.

Recently he had friends come down from the Royal Academy to sing and play the clarinet to his accompaniment – it was just wonderful to hear their music. And just today another Academy friend now in New York, sent him a disc with a Schubert song An die Music which just said everything we had all felt about the role of music in his healing…so moving to read even in translation, but in the song itself positively heartrending in its simplicity and profundity.

An die Musik (Franz von Schober, 1817)

O blessed art, how often in dark hours

When the savage ring of life tightens round me

Have you kindled warm love in my heart,

Have transported me to a better world.

Often a sigh has escaped my harp

A sweet harmony of yours has disclosed

The heaven of better times for me.

You blessed art I thank you.

We are slowly getting used to the unpredictability of this new life we are sharing. It is genuinely hard to plan more than half a day ahead and equally difficult to know where the surprise/challenge/drama is going to come from. The volatility of everything is the most wearing part of the whole process.

In all this, always, your friendship and love continues more important than we could have imagined possible, and we thank you for all the different forms in which that support shows itself.

Take care of yourselves and your relationships too, love from us all

Jacob, Jonathan and Cherry

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