Author f

La mia Cura Salvatore Iaconesi

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/

Paraprotein levels February 14th

Paraprotein = 0

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

Daily affect data February 14th 2013

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

Weekly blood counts data 14th February 2013

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

Haemoglobin: 14.4

White blood cells: 4.95

Platelets: 233

Neutrophils: 3.78

All in normal range.

Neuts up a bit.

Hat index 14th February 2013

Beenie pattern

Image

Hat Index

From the right reading down column 1, then down column 2
"beenie black","trapper","beenie pattern","blue peak cap",
"beenie brown","pork pie", flat cap","bucket hat","blue beat-mod",
"grey beenie","no hat",

 hat index

Hat index Feb 13th 2013

“beenie grey”

beenie grey

Daily affect data February 13th 2013

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

Stoicism = Stiff upper lip = 4

Mood: Calm = 6

Control: Some control =  5

Discomfort: Moderate = 4

Weekly blood counts 12th Feb 2013

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

Haemoglobin: 14.5

White blood cells: 4.9

Platelets: 244

Neutrophils: 2.22

Neuts down a bit, everything else level or better.

Daily affect data February 12th 2013

12th of Feb 2013, today’s data summary:

Mood: Subdued = 5

Control: A little controll= 3-4

Discomfort: Moderate = 4

All a bit on the low side. It’s not fun pulling your hair out in clumps.

I also have chemo at 2.00 at UCLH.