Friday 22nd July, 2016

Finding the limitations of Lycra and clip-ins

Posted by at 12:23 pm in Car stuff, Video (YouTube, Vimeo etc.).

The first time we met we were stuck in traffic on the Aylestone Road. The pedestrilist*, unable to overtake or undertake the pulled-over bus obstructing the cycle-lane, and unable to nip onto the pavement due to there being safety-railings, was leaning on my car's roof-rail, apparently incapable of unclipping his Tour de Leicester cycling clogs from his pedals in order to use his own feet to keep himself upright. I wound down the window and asked him to desist but he didn't. Luckily, the traffic started to move on so there was no further set-to.

About a mile or so further on the traffic had stopped again. I looked in the door-mirror and again there was a Lycra-clad someone leaning on, or about to lean on, my roof-rail. I was fairly sure that it was the same miscreant.

The car in front of mine had pulled forward a bit and had left a car's-length of space in front of mine, so I duly moved into the gap. Sir Isaac Newton and stupidity did the rest. In the rear-view mirror I saw a perfect arc of toppling torso, through the open windows I heard a crumpling noise.

From the sounds being emitted from the patch of sun-kissed tarmac behind my car, I surmised the following:

  • Lycra doesn't protect the wearer from impact;
  • Clip-ins don't clip-out very quickly;
  • My I.Q. and parentage are now questionable.

YouTube has a similar version:

*Pedestrilist: A cyclist who believes that it's OK to chop and change between using the road or the pavement according to whatever obstructions are encountered, such as prams, red lights and buses. No prior indication, life-saver look behind or consideration for others is required in order to execute such random, unpredictable and dangerous manoeuvres.

I should point out now that I have great respect for law-abiding cyclists. I just don't like selfish twats.

Thursday 21st July, 2016

Kicking AML’s Ass: Up!

Posted by at 10:33 pm in Illness and injury.

Two weeks of medically-unaided recovery have made the following kick-ass blood-count differences:

  • Hb: up from 90 to 101 (normal range: 130-180 g/L)
  • Platelets: up from ~70 to 223 (normal range: 140–400 (× 109 cells/L))
  • Whites: up from 2.4 to 4.6 (normal range: 4–11 (× 109 cells/L))
  • Newts: up from 0.82 to 1.65 (normal range: 1.5–7.5 (× 109 cells/L))

After today's check-up, the one outpatient appointment per fortnight has been changed to one per month 🙂

So that's good news for you lot, as I'll have to find something less boring to rattle on about.

Wednesday 20th July, 2016

Best served cold

Posted by at 12:58 pm in In the News, Just for fun.

Image courtesy of my friend and neighbour Chris.

Tuesday 12th July, 2016

Kicking AML’s Ass: Out of the woods, I can see the pub in the distance

Posted by at 4:54 pm in Illness and injury.

Cycle 4 has finished.

I'm not yet discharged back to the care of my GP (that's a few months away) but the hospital visits are now tailing off - one outpatient appointment per fortnight until further notice.

The official line is that I'm in a period of counts recovery which should lead to remission... after previous chemo cycles that recovery has taken a few weeks, but due to the cumulative effect of high-dose cytarabine cycles this latest recovery could take several months, and we can expect set-backs if I catch any bacterial/viral/fungal infections.

To give some idea of how slowly the counts are recovering, here are comparative plots of the neutrophil counts for the latest two cycles. For the avoidance of doubt, we're aiming for a minimum count of 1.50 x 109 cells/litre for minimum-acceptable infection-resistance. 4.50 x 109 cells/litre would be a good mid-range long-term target...

 

 

The red-count plot follows a broadly-similar pattern (at the latest check it was still low at about 90 grammes/litre, climbing, but not very quickly), which means I'm at home with many things to do and not much energy to do them. Mind you, I do have to try... I need exercise in order to convert belly to muscle. Furthermore, in theory, more exercise should mean faster recovery.

And there's more good news! I now have so much head- and facial-hair that I had to have it trimmed to keep it in check. So now I look less like Uncle Fester and more like Great Uncle Bulgaria 🙂

Monday 4th July, 2016

You couldn’t make it up

Posted by at 9:45 pm in Campaigns and Petitions, On the box.

We just saw the T.V. ad for the Alzheimer's Society Memory Walk.

My mother-in-law is a vascular dementia sufferer, I need to get back in shape and we could all do with some exercise, so I proclaimed it to be a good idea for us to have a go.

All present were in agreement, so I went to the website and did a search for a walk near to us.

Well, their search function seems to be afflicted no matter what details are input, I've tried places, postcodes, planets...

It beggars belief that someone forgot to test the software:

Saturday 25th June, 2016

Lest we forget

Posted by at 3:38 pm in In the News.

Europe is much bigger than just the EU:

Anyway, that's where we were a few days ago.

Any idea where we'll end up?

As I recall, the Referendum was only about membership of the EU, and not about membership of the Council of Europe, the EU Customs Union or the European Economic Area, each of which are bigger bodies.

Same for Article 50. As far as I can see, It's a process for leaving the EU, not for leaving the other bits.

Comments welcome.

There's a cool clickable version of this Euler diagram at:

https://en.wikipedia.org/wiki/Template:Supranational_European_Bodies

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

Posted by at 1:28 am in A bit of a rant, Illness and injury.

A quick update...

They 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, 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 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.

Tuesday 7th June, 2016

United States of Europe

Posted by at 9:07 pm in In the post.

I'm not going to declare whether I'm for Bremain or for Brexit.

All I will say is that I am against piss-poor vote-dredging using crap like this leaflet which arrived today:

On closer scrutiny, one sees Old Glory on display at a supposedly-EU top table:

WTF? Really?

Wednesday 1st June, 2016

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

Posted by at 11:33 pm 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.

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.

Monday 30th May, 2016

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

Posted by at 9:51 pm in A bit of a rant, Illness and injury.

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.

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