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Mental battle

Posted by on February 10th 2017 in A bit of a rant, Illness and injury

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.

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*** 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!

No comprende

Posted by on February 6th 2017 in Bargains
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I'm starting to believe that I'll never understand Tesco's pricing strategy:

 

Suffice to say that we bought the six-packs.

Chunky

Posted by on February 4th 2017 in In the garden
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These should be hefty enough to take just about any birds that Nature shoves our way.

Condors, Bald Eagles, Albatrosses etc. should cope. Penguins might struggle with the upright bits.

 

Sayonara Salix babylonica

Posted by on February 2nd 2017 in In the garden, My vids, Video (YouTube, Vimeo etc.)
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It was a sad day when we had to have the old willow taken out.

We would have liked to have kept it but it was becoming unruly and dangerous, the remains of the middle trunk which we'd had reduced during pollarding back in 2009 had rotted all the way down to ground level and were no longer binding the other three trunks, so the whole tree had to go with dignity instead of being trashed by a storm.

It was much older than anyone thought - before felling it, all opinions were that it was just a bit older than the house, so about 60 years old. When the trunks had been taken down I went to see the stump before they ground it out, even at 2ft high it was 4ft across. I tried to count the growth-rings but lost count at about 80, we now think it was into its 9th or maybe even its 10th decade.

We've saved a few wands to plant elsewhere in the garden, so it stands a chance of regenerating from those, but when the ground has settled we'll be planting a large native Birch in its place.

And the wood wasn't all wasted - we've propped up a couple of huge chunks of cut trunk and have hung bird-feeders on them, and we've used a couple of cut rounds to make a hefty Flintstones-style bird-table. Pics soon!

Anyway, here's a rough & ready time-lapse of its last few hours:

Willow from BG! on Vimeo.

Take yer pick

Posted by on January 26th 2017 in @ the movies, Just for fun, Video (YouTube, Vimeo etc.)

Not much happening in the real world, so here's some semi-sci-fi and a classic ad:

🙂

Tree fellers at work

Posted by on January 19th 2017 in In the garden
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Actually there were five of them.

You can't beat a time-worn old-fashioned Irish joke.

 

More to follow.

lalala

Posted by on January 18th 2017 in LMAO!

 

Allegedly it should also say "I won't be listening but I'll pretend to write it down anyway", but they couldn't fit all that text in the available space.

For the lodger

Posted by on January 17th 2017 in Just for fun
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 Trash

Adapted from http://www.xkcd.com/1786/

Snatching defeat from the jaws of victory – Part 2

Posted by on January 13th 2017 in A bit of a rant, Illness and injury

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.

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So, let's see what's what...

Ferritin vs Hb: Well, the ferret-reduction process continues to work while the Hb manages to stay within acceptable limits, but the rate of reduction has decreased significantly:

 

 

Neutrophils vs WCC: These are both trending downwards which isn't good. The newts are heading towards their bottom-limit, and the whites are now below their bottom-limit. I suppose it's possible that the lower-than-usual results could be explained by the testing being done by a different lab, but I suspect that the drops are real. If the latter, it could be that my remission has stalled, or it could be that my levels have dropped due to me fighting an infection (which is unlikely considering that I have a low CRP score of 5). Either way, it needs the beady eye of a diligent consultant, and probably further testing, to figure it out:

 

 

Of course, it could have been dealt with yesterday, but it was so easy for the consultant to smile it off, blame it on the system and assume that all was still OK. Well, here's the news, Professor... IT'S NOT OK. And that means an unplanned visit to LRI early next week, and another unnecessary cost added to the NHS overdraft.

It's not all bad news... platelets are higher than usual (213), so at least I won't bleed to death any time soon.

You can tell that it's Friday 13th.

P.S. I suppose it's possible that I've been given someone else's results again, they do seem rather prone to doing that for me.

Snatching defeat from the jaws of victory

Posted by on January 12th 2017 in A bit of a rant, Illness and injury, LMAO!

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.

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A month ago some bright spark at LRI decided that on such days it would be best to perform just the one set of blood tests, at LGH, on samples taken just before the venesection. Said tests were to cover everything needed for the venesection session at LGH and everything needed for the out-patient consultation at LRI about three hours later. LRI gave me an appropriately-completed bloods specimen form with attached samples bag to give to LGH on the day. It was, allegedly, a fool-proof idea...

I turned up at LGH early this afternoon, they took the blood sample and I handed them the form/bag from LRI. They said that they didn't need the form/bag as they would use their own, so they took away the LRI form/bag for disposal. They also said that they were now using a super-duper digital system on PDAs which would make data collection, storage and transfer much better. I was insistent that the tests would have to cover the requirements of both appointments and that the results would have to be available at LRI by 16:15. They were equally insistent that it would all work flawlessly. I was then bled and given saline as per usual. All good so far.

Of course, in accordance with my expectations and contrary to theirs, it didn't work at all. Nearly four hours later over at LRI the consultant couldn't find the test results in the database, so the consultation was a complete waste of time.

 

 

My Friday is now trashed. I have to wait in for a phone call - someone from LRI will be calling the land-line (but not the mobile) IF the results can be found. Oddly, even though they are going all hi-tech with PDAs and the like, and the results (and my records) should be on a database, they are not allowed to send me the results via text or email. For reasons of security the information has to be given verbally. How quaint!

But hey, they DO like to send me appointment-reminders via text - one seven days before each appointment, and another five days later - telling me that every missed appointment costs the NHS an average of £126.

We sure as Hell won't be doing it their way again. To quote Tolkien's Pippin: "Short cuts make long delays."

Maybe I should be charging "an average of £126" for this afternoon's fiasco?

Welcome to 2017.

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