Archive for the 'Illness and injury' Category

More intransigence

Posted by on May 21st 2016 in A bit of a rant, Illness and injury

Remember when I reported that these things could have been managed if only I'd have mentioned them, and that I gave a list of things that they had screwed up?

Well, you can add another item.

Table for two tomorrow evening at Turtle Bay, Leicester. A bit of a "thank you" to Chris for being such a rock for me for the last five months. A venue recommended by many people, not least by one of the senior staff on the hospital's Hambleton Suite/BMTU.

Cancelled today at the behest of the consultant yesterday. They think that I might pick up an infection from the food. I'm sure that the staff at Turtle Bay would be really thrilled to know UHL's opinion of their fare.

Despite their claims, the consultants can't live up to their statement that these things could be "managed if only I'd have mentioned them". I mentioned to them about us wanting at least a part of this weekend to ourselves a week ago, but still they shit on my plans.

But their plans, they say, are immutable. My 4th (and hopefully last) cycle of chemo would start Monday 23rd May. No, I could not delay the start by a week in order to have, well, a life. 23rd May. Unchangeable.

Until my blood counts showed that I wasn't recovering quite as quickly as their predictions. Suddenly, according to the Consultant, the start of my cycle 4 has been bumped until Monday 30th May. And that is, predictably, unchangeable.

Which will be fun, because the ambulatory chemo is set up to run from Monday to Saturday and it is necessary to attend on Monday on Hambleton Suite for the fitting, Wednesday on Hambleton Suite for a refill, Friday on Hambleton Suite for a refill and Saturday on Day Ward to have the kit removed. Hambleton Suite is open Monday to Friday, Day Ward is open Monday to Saturday. But it seems that they have forgotten that Monday 30th May is a Bank Holiday, and Hambleton Suite doesn't open on Bank Holidays. I'm told that Day Ward will be open but that they don't have staff with the required training for fitting the ambulatory chemo systems.

I suppose it's possible that when they realise that there's a problem, they will bump the immutable yet another week.

But I won't be able to use the extra week(s). I am confident that they will find all sorts of ways of continuing to exercise their control beyond what is necessary. They do like to put on a good "show of power".

Bloody do-gooders.

p.s. Still no apology from Carol.

Transit intransigence – UPDATED

Posted by on May 9th 2016 in A bit of a rant, Illness and injury

Here's what you get for building an observatory, spending £thousands on kit, and waiting years to record rare astronomical events such as today's Transit of Mercury:

 

 

I was on BMTU Day Care on Friday with a minor tongue infection, at that time I told them that I needed to be home all day Monday, they admitted me to Haematology and I told the staff there the same. On Saturday I told the most-senior docs on the ward round, and on Sunday I told the other most-senior docs on the ward round. On Sunday night my obs and bloods were fine, I had all necessary meds, the infection was under control (my CRP marker values proved that) and they agreed to discharge me on the basis that that I would attend again on Tuesday and/or any day after. I had offered to discharge myself in order to save anyone else getting into trouble, but they said that we were all adults and so we reached a grown-up discharge agreement.

OK so far.

Then without any further involvement from me they changed the terms, saying that I was to attend BMTU Day Care on Monday at 3pm, not on Tuesday as agreed. I told them that it would be a long-shot, improbable due to the nature of what I would be doing on Monday (planetary transits are difficult to reschedule!), but I would do my best if the transit wasn't visible and if I could get transport. No promises, though. I confirmed that I would still attend on Tuesday, and/or any other day(s) this week, if I didn't attend on Monday. That was good enough, they said.

On that basis they discharged me late on Sunday. The discharge note stated that I was to attend on Monday at 3pm, no mention of Tuesday, but by then it was too late to get it corrected. I went home.

Against the odds this morning was sunny and clear and the forecast was excellent. I was all set up in the obsy, checking the scope, the mount, the camera and the solar filter, and it struck me that BMTU Day Care, being closed at the weekend, might not be aware of the situation and of the discrepancy twixt agreement and discharge note. I did the decent thing and phoned in to clarify matters.

And far from being grateful, BMTU Day Care called me in under duress. During my call to them, Ward Sister Carol threatened that I may not be considered for further ambulatory care (e.g. for chemo cycle 4) due to me being "untrustworthy". In her book, not being explicit about what you are doing means that what you are doing must be bad. Soon after, I received a call from one of the Consultants accusing me of badgering the staff into discharging me on Sunday. Both aforementioned staff issued denials that I'd ever mentioned wanting to be at home on Monday. They both said that they were unhappy with me, yet neither of them seemed to care that I might be unhappy with them.

You can imagine how I felt as I was packing away the gear and shutting the obsy even before the transit began.

When I arrived at the BMTU Day Care unit the threat was denied (by the Consultant, not by the Ward Sister), but the denials that I'd ever mentioned wanting to be at home on Monday were maintained.

Then they gave me platelets that could have waited until Tuesday, and sent me home.

I was, am and will continue to be livid. Those that called me in under duress today for treatment that could have waited another day will be forever unforgiven regardless of their apologies which are meaningless because they put the blame on me. The next transit will be in Nov 2019 and will not be visible from the UK so I'll need to be in South America to see as much of it as I would have seen today, assuming that their ultra-long-range weather forecast for Nov 2019 holds and that we could ever afford to go. And don't even think about travel insurance for leukaemia patients! So, failing that, I will need to live to be over 90 for the one after, and that's more of a long-shot than the local city footie team winning a bit of silverware.

I tell you, my bucket-list is being shredded by alleged do-gooders. What's the point when, since my diagnosis, they have screwed up or expressed intense disdain for the perceived risks of the following?

  • Christmas Eve, Christmas Day, Boxing Day;
  • New Year's Eve;
  • Chris's birthday;
  • Valentines' Day;
  • Anna's birthday;
  • Easter Friday to Easter Sunday inclusive;
  • Mothers' Day;
  • Mum's birthday;
  • Abingdon Airshow (tickets were a Christmas pressie from Chris - close access to Spitfires etc.);
  • All fell-walking for 2016 and for half of 2017;
  • All tending of my greenhouse;
  • and now the only Transit of Mercury conveniently observable and recordable by me during my lifetime.

Not a bad hatchet-job since Dec 2015. And not conducive to me keeping a Positive Mental Attitude.

Today I was told that most of these things could have been "managed if only I'd have mentioned them".

Well, that's ABSOLUTE FUCKING BULLSHIT.

I did tell them about most of ones that I wanted to be out for, and got doom & gloom or sweet fuck-all in return. The only real effort that they have made so far regarding my need to be out was when they released me to attend my Father-in-law's funeral back in March, but even then they made a complete hash of the release process and for me they spoiled what should have been a special occasion.

And now there's one more item for the bucket-list... I want an apology from Ward Sister Carol. She had no right to threaten me with removal from the ambulatory care program, that decision is made at consultant level.

There will be no more Mr. Nice Guy. My mercury's rising!

UPDATE:

I attended again on Wednesday. Staff Nurse Kelly, who I hadn't seen since Friday, called me over to do my observations. The first thing she asked me was "Did you get to see that Sun thing on Monday?" Proof indeed that I had mentioned wanting to be at home on Monday, and had explained what I would be doing.

Carol, how big a slice of Humble Pie shall I cut for you? I continue to await your apology.

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. 6 doses, 4 hours each.

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!

Hmm...

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.

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