Archive for the 'A bit of a rant' Category

Department of Corrections

Posted by on March 22nd 2017 in A bit of a rant, In the News

Most of today's news is fairly grim, but here's a reason to be cheerful:

Story here.

Of course, that was the easy bit.

A real challenge would be to convince the BBC's dimwitted web writers/editors to use the acronym "NASA", not "Nasa".

Note to Auntie: It's not as if there are no clues on the web. You could even crib it from the NASA logo:

 

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.

*** 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!

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.

Quantum parcel

Posted by on December 19th 2016 in A bit of a rant, In the post

For many years some of the world's most eminent physicists have laboured hard to prove that some objects can be in more than one place at the same time, thus proving Einstein right even though he thought that he was wrong.

Well, they need not have gone to all that trouble. All they had to do was to use eBay to order something from the States via USPS for delivery in the UK, and then use the internet to track it.

According to the tracking tech, here are all of the places where my parcel was known to be at the same time this morning...

According to eBay, it had been with me for 2 days:

 

According to the Royal Mail site it was at their international mail centre at Heathrow "being made ready for despatch overseas"...:

but clicking the "Where has my item been?" button told a different story:

And the good old USPS site deemed it to have been delivered, but didn't state that they had delivered it to the Royal Mail and not to me:

I printed off all of the pics above and thrust them into the hands of the counter-jockey at the local sorting-office. He looked from one print to another, and another, and another, and back again, with a look of incredulity on his face.

They had my parcel. There was no Import Duty or Excise Duty, but it would cost me a Royal Mail International Handling Fee of a tenner plus V.A.T. to possess it, which was more that I'd paid the USPS to transport it from Port Saint Lucie to Heathrow via Miami, and more than the cost of the item inside.

But hey, cutting-edge science doesn't come cheap!

And I suppose that paying a burly sorting-office bloke £11.23 to handle my small package has some comedy value 🙂

One man’s muck…

Posted by on October 29th 2016 in A bit of a rant

Councillor Smithers: Hmm... it looks like we underestimated the uptake of the new green-waste permit, Sir. You know, the one that you brought in because green-waste services were paid for out of the Council Tax, supplemented by the County Council. We have a surplus of £165,000.

Mr Burns: Excellent! Just give me a moment to rub my palms together and to don my Face of Avarice.

Councillor Smithers: Shall we give them a partial refund, Sir?

Mr Burns: No. It's my money now. MINE, I tell you!

Councillor Smithers: Shall we reduce the price for next year, and hence attract more people to the scheme?

Mr Burns: Hell no!

Councillor Smithers: Then what do you suggest we do, Sir?

Mr Burns: Put the windfall to a different scheme, one which they might not support, and where they'll never see any benefit.

Councillor Smithers: Will there be anything else, Sir?

Mr Burns: Yes. Crow about it in the local free rag. We ought to keep the proles informed, it's good politics.

Councillor Smithers: Should we issue an apology or express some gratitude, Sir?

Mr Burns: Over my dead body, Smithers!

 

I don't mind paying for the service, but I do object to paying over the odds for it. I also object to paying into the Developing Communities Fund without my consent while others who didn't pay for a bin-permit won't have to do so.

There must be a law against it…

Posted by on August 28th 2016 in A bit of a rant

but I'll bet my life that nobody would be arsed to apply the law.

I'm talking about the family one road up from us...

the family that goes away every Christmas and New Year, every Easter, every Mayday, every Spring Bank Holiday, every Summer, every Late Summer Bank Holiday, most other weekends....

the family that never set their intruder alarm properly, so that it goes off all day and all night from their departure to their return...

the family that don't give a toss when someone "has a polite word with them" about it...

the family who are

SELFISH IGNORANT C*NTS

They know who they are.

And so do the people who are employed to uphold the law, but clearly don't.

Kicking AML’s Ass: Cycle 4… The end is nigh

Posted by on June 25th 2016 in A bit of a rant, Illness and injury

A quick update...

Click here to show/hide contents

The Hambleton Suite staff fixed the CADD pump. Turned out that they had filled, primed and programmed the pump properly, but whoever had turned it on had, for some unfathomable reason, forgotten to press the "start program" button. It put me a day behind schedule and meant that the last dose was still going in on Ella's 21st birthday but it wasn't too much of a spoiler.

So, that was the Cycle 4 chemo all finished!

On June 10th I felt that I wasn't firing on all cylinders during the thrice-weekly consultation so they admitted me back on to Ward 41, did some blood-cultures and pumped me full of Vancomycin. The following day they said that they had grown a gram-positive bug from my PICC line.  The Vanc was changed to Teicoplanin. By Monday I felt much better so I was discharged, but I would have to attend daily for Teicoplanin shots.

It didn't really work. On June 17th I was admitted again.

The day after, the bug had been identified as coagulase negative staphylococcus. Ooer! They pulled out my PICC line due to sepsis. From then onwards, IV Tazocin and IV Teicoplanin meant cannulation which, as previously, didn't go down well with me... it took seven attempts to get a line in, it worked only once and there had to be two more attempts before a good placement was found. Nine holes during 24 hours. No wonder I don't play golf 🙁

The day after was Fathers' Day. Another key calendar day trashed by the NHS. Well, half-trashed... the kids came in to see me, but it's not the same as being at home. I didn't get to see my dad. Then again, he was on holiday in Italy.

Anyway, the daily CRP infection-markers rose again and again. The doc said that I'd probably be in for the full week. That led to another problem - I had to apply for an emergency proxy vote in order to exercise my democratic right on Thursday. I had to get my case worker to find out about the process and to print the required form, and then get one of the staff nurses to support the application.

Typically, as soon as the application had been posted my infection markers dropped and my blood counts started to rise. I was discharged on Wednesday and managed to vote without proxy on Thursday.

I went back in for a quick blood-test and consultation on Friday, it was all looking good so I got sent home.

So, I have a weekend of not being allowed to do much at home, followed by a Monday consultation.

I suppose it could be worse.

Kicking AML’s Ass: Cycle 4… There will now be a short intermission

Posted by on June 1st 2016 in A bit of a rant, Illness and injury

The first two doses went in just fine, some nausea and epic vomiting as expected but OK after that.

Today I went back to Hambleton to have the pump reservoir fitted for doses 3 and 4...

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They were having problems fitting the new reservoir to the pump. Their not paying attention to their own instructions didn't help. Eventually it was fitted and I was sent home ASAP.

We were on our way home when the pump, in idle-mode until 8pm, started beeping every five minutes. I called for advice, there was nobody there with suitable training to help me over the phone. Moreover, there would be nobody there with suitable training to help me directly if I got back in the car and presented myself and said pump for further investigation. The advice was to "turn it off, lock the lines and go back to Hambleton in the morning".

I turned it off, locked the lines and then took the liberty of taking the whole damned thing off my body and dumping it in a big yellow and purple "Infectious Substances" bin.

See what I did there? I used the same rash caution that they used when they removed perfectly-functional PICC lines due to their not following their own "Suspicion of Sepsis" rules correctly 🙂

Or, as I prefer to view it, tonight I had a choice... sleep downstairs on the settee with a malfunctioning beeping pump full of poison, or sleep upstairs safe in the arms of my beloved.

It was a no-brainer.

Kicking AML’s Ass: Cycle 4… A Royal (Infirmary) Variety Performance

Posted by on May 30th 2016 in A bit of a rant, Illness and injury

You couldn't make it up...

Click here to show/hide contents

Friday 27th May:

Hambleton staff: "Your fourth cycle of chemo will start on Monday 30th, the CADD pump will be fitted on Day Ward."
Me: "Do the staff there know what to do? Will they have the notes this time (the previous time, they didn't)? Will they be expecting me (the previous time, they weren't)?"
Hambleton staff: "Don't worry, we've told Rachel."
Me: "Which Rachel?"
Hambleton staff: "The Ward Sister. Don't worry, they've fitted these things before."
Me: "So Day Ward will have everything they need?"
Hambleton staff: "Yes, don't worry."

 

Monday 30th May:

Day Ward Reception: "Hi Stef. What can we do for you?"
Me: "I'm in for your lot to fit my ambulatory chemo pump."
Day Ward Reception: "Well, you're not on our list."
Me: "Well, that doesn't surprise me."
Day Ward Reception: "Why not?"
Me: "Because Hambleton told me that everything was sorted for today and that I should not worry."

 

A little later:

Day Ward nurses: "Hi Stef. What can we do for you?"
Me: "I'm in for you lot to fit my ambulatory chemo pump."
Day Ward nurses: "Well, you're not on our list."
Me: "I know, I've been told that. It doesn't surprise me."
Day Ward nurses: "Why not?"
Me: "Because Hambleton told me that everything was sorted for today and that I should not worry."
Me: "Hambleton also told me that they had told Rachel, and that you have fitted these things before."
Day Ward nurses: "Ah... Rachel is on holiday."
Me: "That doesn't surprise me either. I know how good these NHS plans are. Not worth Jack."
Day Ward nurses: "Don't worry, we will sort it out, we have fitted these pumps before."

 

A little later still:

Day Ward nurses: "Stef, have you brought the Fitting Instructions?"
Me: "No, I have never had the Fitting Instructions. I have my copy of the User Instructions but that won't tell you how to fit it."
Day Ward nurses: "Oh."
Day Ward nurses: "Do you have your Patient Diary?"
Me: "Yes, but that won't tell you how to fit it either."
Day Ward nurses: "Oh."
Day Ward nurses: "Er... can you tell us how to fit it?"
Me: "Oh, for fuck's sakes. Do I look, talk and act like a trained and paid medical professional?"
Day Ward nurses: uneasy silence.
Me: "I suppose I don't have much choice, do I?
Day Ward nurses: uneasy silence.

 

Eventually it got fitted. I did most of the instruction.

They gave me a new shoulder-bag to hold the pump, I gave it back because I had brought in the (self-modded) bag that I had been given for cycle 3 and which I had been told to bring in for cycle 4.

They brought me 2 bags of pharmacy drugs, mostly stuff that I already had. I gave back the majority of what they had brought. Yes, it was inconvenient for them, but I had already gone through my drug requirement on Friday when on Hambleton Suite, they were well aware of what I needed and what I already had, and appeared to have told nobody about it.

As I type this micro-rant the pump is running, pushing the first of six near-fatal 4-hour hits of high-dose Cytarabine into my superior vena cava (SVC) and as expected it's making me feel quite sick. But it's not making me feel anywhere as sick as having to deal with the well-intentioned but appallingly-executed inter-departmental communications that seem to be the norm at LRI.

I'm fairly sure that the chemo won't kill me. I'm just as sure that the Leukaemia won't "let" me be killed by a secondary infection or disease. I am convinced that I will be shoved off the mortal coil by some sort of bureaucratic/medical/communication cock-up similar to that which happened today. The ward staff on Hambleton and on Day Ward are fine, it's just the system that's shite.

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