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Daily affect data February 16th 2013

Feb 16, 13 10:49 AM

For detailed description of parameters see the Data Methods part of this website

Stoicism: Grin and bare it = 6

Mood: felt calm = 6

Control: A good deal of controll = 7

Discomfort: Moderate = 4

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Metastasising epistemes

Feb 16, 13 9:31 AM

There are no straight lines only entanglements – of matter, thoughts, feelings, people, knowledge, things, transactions. These elements parameterise the project: it’s possibilities, visibilities and public manifestations. Metastasis is important both in its fullest material and clinical sense, and in its power of description of how this project imbricates and parameterises its subject. It’s growth.

As my disease develops it mirrors the death spiral of the wider economic and environmental ecologies within which it is situated. These bind to my disease producing complex assemblages that whirr away at the edges of my understanding. But they do need to be understood, which is one of the project aims, to articulate the metastasis.

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On death and data

Feb 16, 13 8:55 AM

I have talked to many people with incurable disease, they often develop quite astonishing levels of medical understanding, becoming more aware of developments in research than their consultants. There is a heroic obsessiveness at play here a feeling that some mastery over the disease can be enacted by a detailed knowledge of it; through its indexing fetish this project shares that compulsion. This is not merely hubristic, recent research has shown that patients who are more engaged with of their disease do better than those who aren’t. There is also the macabre thought that the project will outlive me, it’ll still be there online, possibly even still producing data, at least in terms of visitor numbers.

So we can posit, that the project also touches on our attitudes to death and disease in a wider sense, namely a desire to find ways, processes and forms to transcend the act of termination and come to an accord with our feelings about it.

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Drugs Index

Feb 15, 13 1:42 PM

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Weekly drug data consumption and costs, February 15th 2013

Feb 15, 13 11:08 AM

 

Velcade 3.5mg vial injection: cost: £762.38

Lansoprazole 14 mg tablets: cost £0.46

Co-trimoxazole 6720 mg tablets: cost  £1.76

Aciclovir 4200 mg, tablets: cost £03.12

Allopurinol 2100 mg, tablets: cost  £0.26

Domperidone 560 mg, tablets: cost £03.47

Total drugs cost for this week: £771.45

Thank god for the NHS.

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Daily affect data February 15th 2013

Feb 15, 13 10:22 AM

For detailed description of parameters see the Data Methods part of this website

Stoicism: Grin and bare it = 5

Mood: Cheerful and in good spirits = 7

Control: Some control = 5

Discomfort: Moderate = 2

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Hat Index February 15th 2013

Feb 15, 13 10:17 AM

Beenie Grey

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La mia Cura Salvatore Iaconesi

Feb 15, 13 9:54 AM

Recently I came across a project by Salvatore Iaconesi whose The Cure website has open sourced all the clinical data from his brain tumour with the aim increasing his chances of survival and contributing data to the international research community. It’s a magnificent project that has already had an impact on debates around the role of the patient and data in cancer treatment. I very much see blood and bones as connected to this vision in terms of putting the patient in control of their data and enabling wider uses of it. There are divergences of approach, my project is less resolutely about open-source politics, I don’t think it will contribute to a cure, although it may contribute understanding to the ecologies of treatment that patients, diseases and medics are entangled in. I also feel blood and bones is a more traditional (if I can use that word) aesthetic project concerned with the collision of the bureaucratic and the personal, the material and the informational, in a way that draws upon conceptual traditions in the arts and wider digital culture.

Please visit his great project:

http://www.artisopensource.net/cure/

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Paraprotein levels February 14th

Feb 14, 13 12:49 PM

Paraprotein = 0

No detectable level after bone marrow test and bence jones urine test. Good.

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Daily affect data February 14th 2013

Feb 14, 13 12:22 PM

For detailed description of parameters see the Data Methods part of this website

Stoicism: I feel fine = 7

Mood: Cheerful and in good spirits = 8

Control: Some control = 5

Discomfort: Moderate = 3

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