Mental battle

Posted by @ 11:38 pm on Friday 10th February, 2017.

In case you'd not noticed, I like numbers and charts. They form patterns, patterns which form pictures each worth a thousand words. Keeping track of the numbers (the counts), noting their trends and learning their meanings, is one of the pillars supporting my determination to beat this festrous malady and then to hold it at bay. The more I understand something, the less I fear it.

*** Warning! Paraphrasing in progress! ***

Way back in December 2015 the docs were saying things like "Your blood counts are the most important indicators of your progress, that's why we do daily sampling and testing", in January 2016 it was "Your counts are good enough to go home, but you can't do (insert any meaningful activity here)", and in February it was "You did what? On a train? Bejeesus, you shouldn't have done that, your counts are still too low!"

A month or so later the concept of context was introduced... "Your counts are better, but we have to consider them in context, and that context is bad so we'll keep you in for a few days."

Later still they said "Your counts are recovering nicely, so we'll start periodic testing and monitoring, keeping an eye on the all-important counts. Monthly for at least a year, starting in June 2016. It's immutable. Only then will we consider cutting you some slack and changing to two-monthly testing and monitoring. It's not up for negotiation."

From all that it's clear that counts are important. I was (and indeed continue to be) tested every day I was there, whether as an inmate, a day-warder, an ambulatory or an out-patient. Each and every decision included a consideration of the counts.

But yesterday, after I had queried the low counts which were not discussed a month ago, the story was...

"Your counts dropped but have now recovered. We have to consider them in context, and that context is good so we will ignore and not bother to explain the reasons why the counts were low. They are good today. You really do have to stop attaching importance to the counts. Swings of up to 20% are not causes for concern. Oh, and we're changing the immutable monthly testing and monitoring to six-weekly as of now, not May/June. As before, it's not up for negotiation."

So, in one fell swoop my coping strategy was left in tatters and my diary until June had been trashed.  And I'm still not supposed to do (insert many meaningful activities here). Cheers for that, it was a real morale-booster.

I won't burden the main blog with more boring blood-test result charts, from now on they will be segregated on their own page due to their alleged lowly importance. Suffice to say that last month my white cell count had "swung" from 5.2 to 3.6 x 109 cells/litre (a drop of ~31%) and my neutrophils had "swung" from 3.06 to 2.00 x 109 cells/litre (a drop of ~35%), clearly not within their newly-introduced "20% swing rule" and therefore justifiable causes for concern. It's obvious to me that something significant happened at or just before the week 28 test, but they didn't give a shit back then and continued to not give a shit yesterday.

I have another consultation booked for six weeks' time. Whether I'll bother to give the mandatory blood sample for testing is a moot point - after all, if the counts aren't important, why waste the NHS's cash on unimportant sampling and testing?

I feel a phase of conflict coming on, so I will continue to grind my axe (for defensive purposes only).

Baruk Khazâd! Khazâd ai-mênu!

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6 Responses to “Mental battle”

  1. Alan Sloman says:

    I sympathise, Stef.
    😕

    I can only talk about my own condition but it's been clear to me for a while that the counts are important, but individual counts less so. After treatment (in my case a kidney transplant) the individual counts were taken daily and any change looked at extremely closely. It was explained to me at the time, as I too am a numerate soul, that the environment I was 'living' in (my own room in hospital) was a constant. After leaving hospital all manner of outside influences were in play as well as changes in meds and also balancing anti-rejection drugs. This meant that individual results were less important than trend results.

    Fortunately, I am now well over three years post-transplant and the trend is encouragingly upwards for the important indicators. However, if I was to concentrate on individual four monthly results I would drive myself bonkers are they can be all over the place.

    I'll say again, that this is for my own case - and may well not apply to yours.

    Chin up, you old bugger!

    All the very best to you,

    Alan

  2. Glen Rayner says:

    Thanks for all the notifications. 🙂
    Are there going to be any pictures of yesterday's near-space events ?

  3. BG! says:

    @Alan Sloman -
    Cheers for that, Alan. It's good to know that I'm not the only number-nut out there, and it's also good to know that your numbers are on the up and trending well.

    Plenty more to say but here's not the place for all of it. Suffice to say that I know a trend of three consecutive monthly drops when I see it. They don't.

  4. BG! says:

    Originally Posted By Glen Rayner
    Are there going to be any pictures of yesterday's near-space events ?

    No pics of any astro stuff here - 8/8 clouds for days on end 🙁

    Or are you referring to Chris blasting off and going orbital when she got her 20-year service cert?

  5. Glen Rayner says:

    @BG! - Aaah - it's nice that you give your wife a certificate. 😈

  6. BG! says:

    Originally Posted By Glen Rayner
    @BG! - Aaah - it's nice that you give your wife a certificate. 😈

    You do like to live dangerously, Glen. Tread carefully, you know not your peril!

    That said, I did genuinely laugh out loud when I read your comment, so my card will be marked too.

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