Tag February 2013

Daily affect data February 17th 2013

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

Stoicism: Grin and bare it = 5

Mood: Subdued = 5

Control: Some control = 5

Discomfort: Moderate = 4

Weekly round-up February 17th 2013

Weekly hats week ending Feb 17th 2013

Weekly hats week ending Feb 17th 2013

This was an interesting week and the data gives a good representation of it’s peaks and troughs.

I have been in discussion to exhibit work arising from the project’s data. This made me feel full of energy and generally very creative and happy as can be seen in the highs of mood and stoicism mid-week (8 and 7 respectively). I’m not tracking creativity but if i was it would be an 8 out of 10. Ironically since my illness came back I’ve had more time to make work than before. Shame I had to develop incurable cancer to get into this position.

I have been working a lot on the project which has been great but by the end of the week I was beginning to feel tired and my back is sore, again reflected in the discomfort index which reached 4. This could be because I’ve been sitting down a lot and not getting as much exercise as I should, or it could be a symptom of the illness. I shall have to keep my eye on it.

The beginning of the week was challenging, my hair started coming out in clumps which initially was a bit of a shock (plunges in control and mood indexes). I’ve had what’s left shaved off and developed a hat index to account for the headgear I’ve adopted. I also developed a stoicism index to accompany the other mood and affect indexes.

I finished my first cycle of chemo which was a milestone and to which I have had only mild side effects, and I had an important meeting with my specialist where I got my paraprotein results which were good. No detectable levels (again reflected in higher mood, control and stoicism scores).

The scores on the doors

For the key to these please look at the Data Methods part of this site

Hats: (Beenie grey x 3, Bucket hat x 2, Blue note Mod x 1, Patterned beenie x 1)

Stoicism: a low of 4 (Stiff upper lip) and a high of 7 (I feel fine), mostly 4-5 (stiff upper lip)

Mood: a low of 5 (subdued) and a high of 8 (cheerful and in good spirits), mostly 6 (calm) and 7-8 (cheerful and in good spirits)

Control: a low of 3-4 (little control) and a high of 7 (a good deal of control), mostly 5 (some control ),

Discomfort: a low of 2 (mild) and a high of 4 (moderate). Mostly 4 (moderate)

bone_marrow_6My bloods (Haemoglobin, White cell count, Platelets, Neutrophiils) all stayed stable and in the normal range.

I had the results back from my bone marrow biopsy (image left) and Bence Jones Urine tests, no detectable levels of Paraprotein.

I consumed a total of £771.45 worth of drugs which included chemo and antibiotics.

Thank God for the NHS

Hat Index February 16th 2013

Bucket hat

bucket Hat

Daily affect data February 16th 2013

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

Drugs Index

Image

Weekly drug data consumption and costs, February 15th 2013

 

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.

Daily affect data February 15th 2013

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

Hat Index February 15th 2013

Beenie Grey

Image

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.