I'm doing a bit of reorganising here. Most of the posts about AML have been edited to show/hide my unimportant ranting, drivel and charts.
The latest blood-test result charts can be found via the sidebar's site nav under "01 Site Nav - Pick a Page".
I may even go so far as to tart the place up a bit by ditching the moody black & grey look and adding a few touches of colour.
But that might be a step too far.
Post updated 28/03/2017
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 many more boring blood-test result charts, from now on they will be hidden and/or 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!
The call came, the results are in, and they're not brilliant. They make a mockery of yesterday's result-less consultation, which I am sure would have had a significantly-different outcome if the results had been available for analysis at the right time.
So, with venesections every third Thursday and out-patient consultations every fourth Thursday, it doesn't take a genius to figure out that every 12 weeks the two sessions will fall on the same day. Today was such a day.
The latest monthly out-patient consultation at LRI was a belter. I managed to prise some interesting info from the consultant, info that clarifies the current ferritin issue.
Caring At Its Best Winners 2015 / 2016
My angels take the stage to receive the "We are one team and we are best when we work together" award at about 3:00
The Ward 41 team have been my extended family for so much of this year, I owe them much more than words can say, and I'll never be able to thank them enough for all that they did.
Here are some snaps kindly sent to me by HCA Natalie... the roll-call, the citation, and one of the shift-teams. Hopefully I'll be able to post a few more pics soon.
It makes me feel really sad that some members of the team have already gone on to other things in other places while I've been out, and I've not been able to give them goodbye-hugs and thanks. I'll miss them more than they'll ever know.
Update: Here's another pic kindly sent to me by Ward Clerk Sam, who always manages to miss the photo opportunities:
They scrub up well, don't they? TBH, I didn't recognise some of them with their clothes on 🙂
