Sunday 17th March, 2019

As predicted

Posted by at 9:45 pm in A bit of a rant, Health, or lack thereof.

Two days ago: "... I suspect that they will find a reason to admit me on Sunday after the check-up results are in."

Sunday: admitted to Ward 41 after a seven-hour wait in the Osborne Assessment Unit, platelet count way down at 17 × 109 cells/L (Normal: 140–400 × 109 cells/L), neither sign nor hint that there are any matched platelets on-site for me.

And now I'm told that I need an MRI scan in addition to the heart test/scan and the breathing test.

Add to that the fact that the Ward Sister can't figure out why I was prescribed Ranitidine pills... as far as we can determine, it was to protect my digestive system from the effects of the steroid treatment that I was having for inflamed heels... but that treatment was Hydrocortisone cream... topical, not oral!!!

This could be a busy week. Plenty of nonsense to get sorted out, plenty of faith in need of restoration, and plenty of rides out in the ambulance. Probably no "blues and twos" though.

Image supplied by CJR.

Friday 15th March, 2019

A tad testy

Posted by at 11:15 pm in A bit of a rant, Health, or lack thereof.

Back at Day Ward today, platelet count 32 × 109 cells/L (Normal: 140–400 × 109 cells/L), hopefully they will be enough to see me through to Sunday (yes, Sunday) as they didn't give me any today. I have no idea if they've ordered any platelets in advance, but I'm going to need them.

Throughout the day I've been fielding calls from Glenfield Hospital telling me that I have appointments for tests next week... the first call was for a heart test/scan. It took me a while to realise that this wasn't another periodic follow-up check related to the angioplasty/stent operation that I had a few years back. They wanted me in next Monday for that, but at the time of the call I was still scheduled to be in Day Ward at LRI on Monday, so I asked them to work it out with the LRI Haematology Red Team.

Then another call... a breathing test. They wanted me in next Tuesday for that, but at the time of the call I was still scheduled to be in Hambleton clinic at LRI on Tuesday for "The Big Pre-SCT Chat", so they said that next Thursday would be OK.

Somebody in the Red Team had pressed the Big Red Button to start the ball rolling for SCT, but nobody in the Red Team had bothered to tell me beforehand.

No surprises there, then. Thanks a bunch.

To be fair, one of the Red Team consultants did take me aside a few hours later to explain the situation, but it would have been far better to have been told before the calls started coming in. Forewarned is forearmed. At the moment life is complicated enough without all of these calls out of the blue.

And I still don't know if I have to be back at Day Ward on Monday. I'm only guessing here, but I suspect that they will find a reason to admit me on Sunday after the check-up results are in. If they do, they can have the pleasure of sorting out all of the surprise appointments and arrange transport etc..

Wednesday 13th March, 2019

Doctor’s orders

Posted by at 7:01 pm in Health, or lack thereof.

When I went to Day Ward on Monday they put in 1 bag of platelets and 2 bags of reds, and was told that I would need more platelets on Wednesday (today). As I always do, I reminded them that I need platelets that are HLA-matched (collected by apheresis from specifically-matched donors), which usually take 2 days to get from the Histocompatibilty & Immunogenetics Laboratory in Sheffield, so to get them for today they would have to order them on Monday.

I went back to Day Ward today, in real need of those platelets (the slightest knock is causing bruising, I dare not risk even a paper-cut) and indeed the results of this morning's blood-test confirmed a dangerously low platelet count. The duty doctor discussed it with me, then she went off to "look on the system" for my pre-ordered platelets.

But there were no matched platelets ready for me, and nobody could find any evidence that a doctor had raised an order for them on Monday.

As you would expect, I really "lost my shit" - the need for HLA-matching is written/printed through my records like letters through a stick of seaside rock. It has been three years since I started needing pre-ordered HLAs, and that need doesn't just go away. Having "pooled" platelets from the local blood-bank, while convenient, is not an option - for me they could be lethal.

After wasting today, I'm expected back there tomorrow, as they reckon that they can get some via some sort of emergency service. In short, they want someone on a motorbike to bring them down the M1 through Storm Gareth. I wouldn't fancy being that someone.

Just to compound the mess, I'm supposed to be on a 2-day cycle in Day Ward, which means that if I go in on Thursday it's likely that they will want me back in Saturday. I've told them that they can stuff that idea, I have better things to do. Not only is Saturday the final day of the 2019 Six Nations Championship, but we're doing our best to look after Chris - she needs our support as her Mum passed away earlier this week.

So, as I see it, they have 2 options...

1: Order enough for Thursday to last me until Monday;
2: Order some for Thursday and some for Friday.

Whichever option they take, I'll need more on Monday.

Of course, a lot depends on availability - if none of my limited pool of compatible donors has donated platelets since Monday, I'm pretty-much stuffed. Platelets have a typical shelf-life of about five days after transport/testing/washing/irradiation.

Meanwhile, the chemo has intentionally (and hopefully temporarily) stopped my own body's ability to make its own platelets for the next week or two, so without a donation my platelet count will probably be near-enough zero by this time tomorrow.

If you're thinking of becoming a donor, or if you're already a blood-donor and fancy upping your game, please click the following image:

Tuesday 12th March, 2019

IBM ThinkPond

Posted by at 1:10 am in Blast from the Past.

I bought this R61i ThinkPad in a sale back before Lenovo acquired IBM's personal computer business in 2005. It had every feature that I wanted at the time - plenty of connectivity features, wide-screen, UltraBay system, dockable, what was a huge HDD back then (160 gig), and, IMO, the best Windows operating system at the time - XP.

Over the years I've tinkered with it - it's not in the same league as "Trigger's Broom" but now it has a 1TB HDD inside, a second 1TB HDD in an UltraBay caddy, additional RAM to take it to max for the operating system (still XP, but with all SP3 updates), and USB 3.0 capability thanks to an ExpressCard USB 3.0 Adapter. The only parts failures have been the cooling-fan assy which was a cheap fix, the battery (I got a full decade out of the original before it degraded) and the matt screen which I was going to replace with a glossy one anyway. I even paired it up with an Advanced Dock to get even more ports, an extra UltraBay slot, and dual-monitor capability.

It was perfect for my needs, it did whatever I asked of it, I looked after it and it hardly ever complained. It owed me nothing.

But last Wednesday I let it down. I drenched it. In my elation at being told that I would be discharged from the hospital for a week or so, I decided to celebrate by going outside for the rare pleasures of some fresh air and a bit of sunlight. While slinging my jacket on I knocked over a full cup of well-sugared tea, and almost all of it went into the laptop. There were pops, crackles, fizzing and bleeping, so I pulled the mains plug, hit the on/off button and removed the battery and the UltraBay HDD - both were soaked.

I drained everything as best I could, leaving a ThinkPad-shaped stain on the hospital blanket, but after a few hours it refused to start. I brought it home and started to mourn my loss and to curse my careless enthusiasm.

But a day later I had time to give it some TLC so I put it on a hot radiator for a few hours in an effort to dry it out. If it wouldn't start after that, I was going to take it apart, clean and dry its guts, and reassemble it, but it wasn't necessary... first attempt: bleep then shut-down... second attempt: BIOS fan-error message then shut-down... third attempt: no fan-error but shut-down on Windows start... fourth attempt: up and running again! Aside from a somewhat sticky shift key and a mild aroma of caramel, it's back as it was before. It's been running fine since then, apart from the occasional fan-error on start-up.

Result!

Trigger's Laptop... "Well here's a picture of it, what more proof do you need?"

Friday 8th March, 2019

Dumpsterkopf

Posted by at 11:32 am in A bit of a rant, Name and Shame.

Sorry we missed you. Your item is...

in the garden waste bin.

Why?

Because we can't be arsed to visit any of your neighbours to leave it with them, we can't be arsed to find your "Safeplace" (the greenhouse) to leave it there, and we can't be arsed to put it back in the van to take to the collection office... all options as per proper procedure and as detailed on the card.

We also can't be arsed to fill in the "Something for you" card correctly.

What we can do, on your behalf, is break the rules regarding what HBBC say can and can't go in the garden (green waste) bin.

So how does this work when the intended recipients are away from home for a few days and someone else puts their bins out for collection? That someone else won't check what's in the bin, and won't have been "carded". The item wasn't bar-coded and so wasn't scanned before being "dumped", so its delivery wasn't recorded and there is no traceability.

This isn't the service that the customer has paid for.

Royal Mail, you need to step up to the plate rather than wander over to the bin.

And the best bit? I've been in and awake all morning, confined to barracks. I'd have heard if you'd been arsed to knock on the door.

 

 

 

Tuesday 5th March, 2019

Matchmakers

Posted by at 2:51 pm in Health, or lack thereof.

Cycle 2 chemo done and dusted, just waiting for the counts-crash and the reboot.

I'm told that they have found suitable stem-cell donors and are trying to determine which would be the best match, so that's good news. I have no doubts that a match won't be ideal, but anything's better than nothing.

I have a feeling that they will give me the chance to go home this coming weekend. I may well take them up on the offer - there are a few other important matches which will demand my attention: