Normal

Bloods: normal

Light chains: normal

Headspace: beginning to revert to normal

So that’s another 3-monthly assessment come and gone. I can now return to being ‘near-normal’. For a bit anyhow. While I was at the clinic I was asked to participate in a clinical study on wellbeing for myeloma patients which I’m really happy to do. I gave the researcher the link to this blog as an example of self-anthropology. Looking forward to it especially as I’m considering re-starting my data self-surveillance using some new indexes. More of that soon.

 

Living 3-months at a time and going batshit crazy

A few months ago a friend asked me if having an incurable form of cancer had given me any special insights on life. I answered in the affirmative, but added the rider “but not any that you’d want to have”.

I was slightly dramatizing the point as on the whole I manage to keep a grip on things, despite the pending and very present threat of mortality. When you are diagnosed with a cancer like myeloma you pretty quickly have to develop coping mechanisms or you’ll pretty soon turn batshit crazy.

My methods sound quite simple but are actually quite difficult to implement; they do more or less work for me though:

When I’m well and not under treatment, then I’m well and I don’t think about my disease, I live in the present. It’s only when I enter periods of treatment that I ponder THINGS and STUFF.

However, every 3-months I have a check-up with my specialist. I’m tested, questioned, prodded and probed. This coming Thursday it’ll be 11-months since my stem cell transplant. That’s gone very quickly, an 18-month period of remission following a SCT is normally considered good going. So I’m over halfway through what might possibly be a good remission period. These 3-monthly check-ups really fuck with my head and it’s here that my carefully crafted coping methods come up short. Around a week or so before the appointment, I start imagining all sorts of phantom and not so phantom pains, play out potential conversations with my specialist concerning re-lapse, and plot how to break the potential news to friends and loved ones. It’s very difficult to control thoughts, feelings and scenarios. I have no neat way to end this post either than I’m definitely batshit crazy at the moment so apologies all round. I’m probably a bit of a handful.

Lots of money

1000

That’s how much my Stem Cell Transplant cost.

Thank you to Scotty from the Myeloma under 50s group who told me last night.

Thank God for the NHS.

Updating…

My last update was in October, it’s been sporadic on B&B for many reasons. Firstly I actually returned to work full time in September although strictly speaking it was supposed to be part-time starting in October. I was immediately sucked into a very important Faculty submission for the Research Assessment Framework. In my role as Deputy Director of the Art and Design  for Westminster this meant total immersion, total engagement, total subjugation to the process. This was gruelling but also in a masochistic kind of way pleasurable as it enabled me to get away from my illness and engage with the world again.

Secondly since my Stem Cell Transplant in early July i’ve been in waiting mode. I’ve been tested on a regular basis during this period and will be in the near future to assess whether the transplant was successful or not. So I’m in a kind of limbo, while I feel well, I don’t know if I am. This has meant that I’ve been deliberately avoiding the blog. I simply haven’t felt psychologically strong enough to engage with the process of laying bare how I was feeling. At times it’s been very difficult to manage the uncertainty.

I am (sort of) resolved to start up again as in this pause I’ve had ideas about how to shape and forward the project. I have a clearer sense of it’s conceptual framings, approaches and linkages to other similar work.

I’m also looking for a haematologist to work with on the project so please contact me if you think anyone might fit the bill.

More after the new year.

t.

blood counts data 30th Dec 2013

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

Haemoglobin: 14.3

White blood cells:  7.4

Platelets: 192

Neutrophils: 5.0

All in normal range.

Serum electrophoresis: No paraprotein detected

Immunofixation: Awaited

MRI: Awaited.

Hat Index 14th Oct 2013

Beenie Grey

Image

Daily affect data 14th October 2013

After a 10 day break from blog

Stoicism: I feel fine: 7

Mood: felt calm ≈ 6

Control: A little control = 3

Discomfort: Mild = 2

Hat Index October 13th 2013

Hat: no hat

Daily affect 3rd Oct 2013

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

Stoicism: Grin and bare it = 5

Mood: Felt calm 6

Control: Some control = 5

Discomfort: Severe 7

Hat Index 3rd Oct 2013

Beenie Grey

Image

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