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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.

Hat Index 14th Oct 2013

Beenie Grey

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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

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

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Daily affect data 2nd Oct 2013

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

Stoicism: Grin and bare it = 5

Mood: felt subdued 5

Control: Some control = 5

Discomfort: Severe = 8

Bone marrow sample

Hat Index 2nd Oct 2013

Beenie Grey

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Daily affect data 30th Sept 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: Mild = 2

Hat Index 30th Sept 2013

Beenie Grey

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