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

Posted by @ 9:51 pm on Monday 30th May, 2016.

You couldn't make it up...

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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. The ward staff on Hambleton and on Day Ward are fine, it's just the system that's shite.

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