Archive for the 'A bit of a rant' Category

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

Posted by on June 25th 2016 in A bit of a rant, Health, or lack thereof
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A quick update...

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, Health, or lack thereof
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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.

[/reveal]

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

Posted by on May 30th 2016 in A bit of a rant, Health, or lack thereof
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You couldn't make it up...

Friday 27th May:

Hambleton staff: "Your fourth cycle of chemo will start on Monday 30th, the CADD pump will be fitted on Day Ward because Hambleton will be closed on Spring Bank Holiday Monday."
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.

Running out of chalk

Posted by on May 27th 2016 in A bit of a rant, Health, or lack thereof
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Yet another item for the "these things could have been managed if only I had mentioned them" list...

Spring Bank Holiday Monday.

Not managed.

Cycle 4 chemo starts on Monday 30th.

I'll be demanding days off in lieu.

Chalk up another one

Posted by on May 24th 2016 in @ the movies, A bit of a rant, Health, or lack thereof
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Another item for the "these things could have been managed if only I had mentioned them" list...

A night at the cinema. The least that I could offer to Chris in lieu of that cancelled table for two at Turtle Bay, Leicester.

This time we just did it and told them afterwards, at which time there was much sucking of teeth and wringing of hands. If they had been told beforehand, it would have been another no-no, despite there being only FOUR others watching the movie, and none of them within 40 feet of us. Hardly an infection risk, and certainly no food-infection risk.

Monday's bloods were so good that I'm no longer a peril to myself. Indeed, one could extrapolate backwards 24 hours and say with a high degree of certainty that my Sunday bloods would have been sufficiently good for the meal at Turtle Bay to have been safe for all and sundry.

So, from now on, they will be monitoring the bloods and assessing the risks, but I will be making the final choice as to what I do with those risks. I see no point in being alive without a being able to live my life.

The rebellion continues as follows:

Wednesday:. Meal out for Ella's 21st birthday.
Saturday: Maybe a day fly-fishing at Draycote Water?
Sunday: Another go at Turtle Bay. I've been through the obits and have yet to find any fatalities due to Jerk Chicken, Rice & Peas.

Cycle 4 chemo is still scheduled to start on Monday 30th... or on Tuesday 31st... much depends on how they cope with the Bank Holiday which they seemed to have omitted from their earlier calculations. They say that they will have their plan sorted by this Friday. I bet they haven't considered the fact that I might not give my consent if it doesn't fit with my plans 🙂

Oh, and in case you were wondering, we saw A Hologram For The King... a really enjoyable movie.

More intransigence

Posted by on May 21st 2016 in A bit of a rant, Health, or lack thereof
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Remember when I reported that these things could have been managed if only I had 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 a week ago about us wanting at least a part of this weekend to ourselves, 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 usually open Monday to Friday, Day Ward is usually 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.
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