Archive for the 'Illness and injury' Category

Kicking AML’s Ass: Cycle 3… this time it’s personal

Posted by on April 28th 2016 in Illness and injury

"Dr. 2"'s plan won out. In an effort to reassure me, I was told that they'd tested the ambulatory system on a couple of suitable Haematology patients last year, and that I was the first Haemo patient to have it "now that the wrinkles had been ironed out".

The chemo for my third cycle was administered at home. High-dose Cytarabine given by pre-filled and pre-programmed portable CADD pump over 6 days as an ambulatory patient.

Well, it didn't take long for me to find more wrinkles... plumbing errors, filter problems, valve problems, even simple things like being given a shoulder-bag with the strap sewn on at the base, not the top. And no, the thing can't be put into the bag the other way up - the display wouldn't be visible, and the light-sensitive chemo in the reservoir would be "exposed" and thus ruined. The instructions, however, do say that it's important to keep the pump upright. Doh!

Anyway, all that finished on Saturday. I'm currently at home, blood-counts have crashed as planned, now we're just waiting for them to recover.

Hopefully this time it won't take a whopping 64 days for them to do so.

Losing my cool

Posted by on April 19th 2016 in Illness and injury

Another medicinal acquisition.

Because high-dose Cytarabine causes inflammation, redness and irritation of the eyes.

This time I AM complying with the printed instructions...

... however, the clinic staff told us that it must be kept in the fridge!


I'm not sure how warm they think our house is, or in which climate-zone we live, but it's hardly sub-tropical near Leicester at this time of year.

Kicking AML’s Ass: Cycle 2 – Coffee-creme

Posted by on April 16th 2016 in Illness and injury

Out-Patient appointments... just like a box of chocolates, you never know what you're gonna get. More to the point, I never know which of the triumvirate of Haematology Consultants I'm gonna get.

They are, of course, all equal. But one of them is so obviously more equal than the other two...

In the following, the names have been changed to protect the identities of some of the main players.

Three weeks ago "Dr. 1" told me that the poison of choice for my third cycle of chemo would be Cytarabine. Two days on, one day off, then two more days on. A total of five days. I would be given that as an in-patient due to the risks associated with the high doses/concentrations involved. We could start as soon as my blood-counts were sufficiently good and stable. I like "Dr. 1" because he explains and justifies what he is doing.

A week later and "Dr. 2" was telling me a different story. My third cycle of chemo would be self-administered at home. No idea which chemo drug(s) or how long they would be given for. We would start as soon as my blood-counts were sufficiently good and stable.

Last week "Dr. 1" was sticking to his previous script - Cytarabine over 5 days as an in-patient. My blood-counts were good and stable but the start of Cycle 3 would have to be delayed until some other issues (flu on the ward, bleeding arse, bleeding gums) had been brought under control. I told "Dr. 1" that "Dr. 2" had told me a different story, he said that his plan was the one that would be best.

On Thursday this week "Dr. 2" was sticking to her previous script. My third cycle of chemo would be self-administered at home. No idea which chemo drugs but they would be given by portable pump over 6 days. We would start on Monday regardless of the other issues. She trashed the plan set out by "Dr. 1". She didn't discuss the results of the testing of the bone-marrow sample that they took from me on Tuesday. Basically, I was lectured and then dismissed, the next patient was waiting and the docs were running late.

Me and Chris went home with very little information but with plenty to discuss. WTF, I'd just been steam-rollered! Why were the consultants not in agreement? Which plan was best? Just who was in charge?

On Friday I turned up unannounced and started to ruffle a few folks' feathers. I wanted answers, facts, explanations. It took a few hours and I had to threaten to kick up a bit of a stink, but eventually the third member of the triumvirate (we'll call her "Dr. 3"), supported by a concerned and considerate colleague, was delegated to placate me. "Dr. 2" was on the wards only a few yards away and was aware of the situation but seemingly wasn't "equal" to the challenge of dealing with it.

And it all got sorted out really quickly and easily... I told "Dr. 3" my concerns, she gave me the missing facts, we discussed the reasoning behind the different plans. All stuff that could have been sorted in five minutes during the out-patient consultation the day before, but it cost me a ruined Friday and it cost them precious NHS resources. Hopefully they will learn from this "opportunity".

The result is that we now all know what the plan is, and why.

And from now on they'll all remember that it's ME who is in charge.

We start Cycle 3 on Monday. It's not standard treatment so I bet it'll be a hoot!

Well, you can stick that up your Anusol

Posted by on April 7th 2016 in Illness and injury, LMAO!

My latest acquisition.

Mine because the hospital wouldn't give me the ever-reliable Xyloproct but did give me the utterly-useless Anusol.

I'm still trying to work out how to comply with the instructions:

My nads are already dangling in the broccoli, I don't think I can back in any further.

Perhaps I'm not bending over far enough?

Vague advice

Posted by on April 4th 2016 in Illness and injury

"Be careful, don't overdo it, know your limits, if you do too much then rest up and recover. Phone us if you feel ill."

That's the universal advice given when they send patients home to continue their inter-chemo recovery away from all of those ill people in hospital.

The trouble is, some of us don't feel like we're doing anything of worth unless we are pushing our limits or ourselves. How do we know when to rest up?

Old Jack may well be pushing his limits (and his luck) by asking his missus to pass the TV remote control to him for the umpteenth time this afternoon, so for his own safety he should probably back off a bit and have a snooze. Or maybe he should simply use a laggy-band to fix the thing to his person so that he doesn't drop it every five minutes.

But we're not all as doddery as Old Jack. We don't all need Zimmer-frames to get to the shitter, we don't all need "Care in the Community" rob-dogs to dispense our pills while eyeing up the family silver display in the corner-cabinet.

Today I've dug a fair wedge of garden, tidied up one of the sheds and moved eleven 3x2 slabs (yeah, the thick council ones). Not wanting to be caught standing around doing nothing, I then laid five of them, sorted out the mains electrics in the sheds and in the greenhouse, entertained three sets of neighbours, shot some wood-pigeons and then made plans to walk unaided to the shops, and hopefully back again, without having a bob-a-job boy-scout dangling from my arm to help me to cross the road, in order to purchase some milk (so that I can entertain more neighbours tomorrow). And I still found the time and the energy to castigate the postman for delivering yet another tranche of junk-mail.

And I've yet to find something to do this evening.

Tomorrow is already planned... try to finish building the frame & wire fruit-cage during the day, and, without a safety-net or a parachute, walk to and from the pub in the evening with the intention of imbibing more than a little liquid propellant.

That's not really overdoing it, is it?

Or should I look forward to another bollocking during this Thursday's out-patient appointment?

Kicking AML’s Ass: Cycle 2 – A strange twist

Posted by on March 31st 2016 in Illness and injury

I went in for the out-patient appointment today. I was expecting to be sent back home for a few more days, but not for a whole week.

I certainly wasn't expecting to be taken off all of the antiviral, antibiotic and other protective medications too... all so meticulously prescribed and dispensed a week ago. So no more of the following:

A week ago they had already whittled-down the list by removing the following:

That leaves me with just a few skin lotions, some Paracetamol and a couple of boxes of Niquitin. I'm no expert, but I don't think that they will be enough to break the lines of Mordor fend off the nasties before chemo cycle 3 begins.

Hey ho. I'm appointed to be back in as an out-patient next Thursday. If they have caused any problems they can sort them out then.

Kicking AML’s Ass: Cycle 2 – And on the third day*…

Posted by on March 27th 2016 in Illness and injury

... they conceded that I hadn't had sepsis and agreed that my reaction was due to the "matched" platelets, so they are sending me home.

Pending today's blood-test results, of course.

I'll wager that they could find something there to keep me in if they tried hard enough, but I don't think they would dare to look that closely.

Back in for an out-patient appointment on Thursday, time TBA, I am to wait for a phone call to tell me when to be there.

*  52nd day of Cycle 2, 43rd day post-chemo.

Kicking AML’s Ass: Cycle 2 – HLA-mismatch

Posted by on March 26th 2016 in Illness and injury

Rewind to Thursday... Day Ward as previously arranged. In for a platelet infusion. Theoretically a routine "in & then home" job.

This visit didn't follow the usual pattern. I wasn't send down to Phlebotomy to give a blood sample prior to having the infusion, and Day Ward didn't do the usual temp/pressure/sats/rate observations either. Specifically, comparing platelet counts from both before & after an infusion is the accepted way to ensure a valid value for the platelet increment, an indicator of how many platelets stay in and don't get rejected. I pointed out those omissions three times before kick-off, but nobody did anything about it. After yet another cannula insertion (right elbow), they just got on with the infusion process. The platelets were HLA-matched (from Colindale), so in theory I wouldn't need to be pre-treated as I had been before. Nevertheless I was given a shot of Piriton beforehand just in case.

It all went in well, so after the infusion had finished they took some bloods (for the "before & after" comparison which was doomed to failure because of the pre-infusion bloods omissions) and removed the cannula. Then, 30 minutes after the infusion had finished I started shaking and baking again. Spiking at 39C. With nausea and vomiting just for added excitement.

They wanted to gave me a shot of something IV and to take some bloods but the cannula was gone. They had to put another one into the right elbow, that one too was removed after use. They were treating me for phantom sepsis again, they still were not seeing the familiar pattern in their records being repeated before their eyes.

The S&Bs had abated an hour or so later but they kept me under close observation for a further few hours before telling me that I'd be admitted as a precautionary measure. I had to wait a few hours more while they found me a space on the Osborne Assessment Unit where they put in yet another cannula (left elbow) so that they could give me some IV Tazocin and an 8-hour 1l bag of saline to start at about 1 a.m..

Sometime in the early hours they put another cannula into my right elbow, I think it was to take bloods but I was too tired to pay much attention.

At about 9 a.m. when the bag had finished the saline cannulation site looked like this:

Plenty of saline under the dressing, plenty of blood under the dressing and leaking from the cannula entry and from the extension tube union. It was worse 3 hours later, I had to insist that it was all removed and cleaned up as it was putting me off my lunch. By then the extension tube had unscrewed and the cannula was open. Earlier, the other cannula (in the right elbow) was found to be dislocated and had to be pulled.

When the docs arrived during their Good Friday rounds I was told that I'd be kept in for 48 hours due to their perceived risk of sepsis and that I would need more IV treatments for sepsis during that time, and therefore at least one more cannula would be required. They weren't expecting the resounding "NO!" as I withdrew consent for further cannulation, and recommended a PICC line to replace the one that they really shouldn't have removed back on the 14th. I sent them away to review their options, and eventually they relented and started non-IV alternatives. We agreed certain conditions... oral antibiotics so long as my temp and obs were all "in the green", but anything critical and I would allow essential cannulation only if a PICC line could not be arranged.

Late on Friday they transferred me up to the now-familiar Ward 41, where the nursing staff were gob-smacked by the whole affair. I've been advised that someone will be formally reporting the bad cannula episode.

It's now Saturday and as I expected my temps and obs have all been "in the green" since the 48 hours of monitoring started. No signs of sepsis or other infection, feeling fine. Slight nosebleed (now stopped) but they don't have any platelets in stock for me so that's a good thing.

So, only 3 more days of my life wasted... so far. The are keeping me in tonight as well, so make that 4. That won't make me any happier.

Kicking AML’s Ass: Cycle 2 – there and back again

Posted by on March 22nd 2016 in Illness and injury

Day Ward... Tuesday morning. Today. Blood tests and all that malarkey.

As predicted (by me) the tests indicated that I need more platelets. The docs didn't predict it (despite all of the trends of evidence at their disposal) and therefore didn't order some in advance (i.e. yesterday) from Sheffield, Liverpool or wherever. I really did waste today just being told to attend again for platelets on Thursday.

As to the bigger question of whether I'll be in or out, I'm out, regardless of what my neutrophil count is (we don't know, for some bizarre reason they omitted that part of the blood-test ?!?!?!? ). Currently, Ward 41 is full of ill people.

Day Ward... it's called that because no matter how much or how little treatment or testing you need, it always takes up enough time to screw up your whole day. Today stands as testament to that.

Kicking AML’s Ass: Cycle 2 – hither and thither

Posted by on March 21st 2016 in Illness and injury

The phone-call didn't come, I had to make it myself. Still no word from the docs as to there being a plan, so I waited again for a call-back.

When it arrived, it was no surprise... be in Day Ward on Tuesday morning. Blood tests and all that malarkey.

No doubt I'll need platelets and/or reds. Reds are ten-a-penny from the onsite blood-bank, but if it's platelets I hope the docs had the common-sense to order some in advance (i.e. before tomorrow) from Sheffield, Liverpool or wherever. I really can do without wasting tomorrow just being told to attend again for platelets on Wednesday.

As to the bigger question of whether I'll be in or out, that depends not only on the blood test results but also on the availability of bed-space. Currently Ward 41 is full, with many other potential in-patients awaiting their turns.

Day Ward... it's called that because no matter how much or how little treatment or testing you need, it always takes up enough time to screw up your whole day.

Anyway, it's a well-known fact that Birmingham has more miles of canal than Venice. Less well-known is that I've had more miles of cannula than Birmingham:

Actually, that's probably a good representation of how I'll be sticking it to the junior docs if they don't get their act in gear.

Blog Widget by LinkWithin