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

Posted by @ 1:14 am on Saturday 16th April, 2016.
Categories: 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...

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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!

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One Response to “Kicking AML’s Ass: Cycle 2 – Coffee-creme”

  1. alan.sloman says:

    Well done that man!

    I found, through a very similar experience quite a while ago, that if you kicked up a stink, publicly, about the shoddiness of a consultant's behaviour / advice, you quickly arrive at the correct result and they handle your concerns straight away thereafter, not wishing to go there ever again.

    Consultants work for you, and no matter how busy they are, you should be the only thing that matters to them when you are talking with them. Your medical outcome is paramount - not their tiring knackering day. I know they are having a tough time, but it is nowhere near as tough as the time you are having.

    10/10 Sir!

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