I went in for another consultation today, to discuss the findings of last week's bone-marrow aspiration. I was told that they'd found nothing untoward in the samples and that everything looks fine in there. No sign of the AML returning. As you can imagine, that was a huge relief.
But the results of today's FBC test showed something which I was expecting but which threw the locum consultant... all four main indicators had fallen again since the previous test of 13th September 2018. Platelets and WCC are now even further below bottom-limit, and I wasn't given a value for the neuts count (later I found out that they are almost down to bottom-limit). Hb is still in limit but is trending downwards like the others. Infection-markers are at a two-year high.
To be told all that and then be told that it's not a problem was a bit of a jaw-dropper.
The locum consultant couldn't see the huge cold-sores up my nose, and when presented with the under-arm rashes she asked me if I had shaved my pits... yeah, I'm hairy all over (apart from my head and eyeballs), so why the feck would I shave only my armpits? She didn't want to know about the dermal necrosis that the previous consultant had considered to be a matter of some concern. After she had not answered a simple direct question regarding my results, asked three times in as many minutes but rebuffed with prattling on about something else to avoid having to answer, and after I'd been given an appointment to come back in four weeks, I was in danger of losing my composure and so had to leave.
I wasn't happy - I couldn't figure out why the first drop in counts merited a two-week rematch and a BMA, but a drop further into the danger-zone with no explanation merited a four-week rematch. I went off to hunt down my Leukaemia Nurse Specialist who never bullshits me.
He was elsewhere (on a well-deserved holiday) but one of the other Nurse Specialists picked up the ball/hot-potato and ran with it. And boy did she run well! She listened, understood, coped with my anger (not directed at her), installed us in a comfy room with a hot cuppa each and went off to get things sorted. On her return she explained everything in terms that we understood, filled in the undisclosed blood-test results, told us that the three prime consultants thought that a four-week wait would be inappropriate, and declared that she had managed to rearrange the consultation for two weeks later rather than four. She was brilliant!
So now we're pondering the fact that, despite the current lack of any hard evidence, they think we might be looking at the onset of something new... Myelodysplasia. From where I stand the symptoms seem to fit. And I've been telling the consultants and my G.P. about those symptoms for months on end. No doubt there will be more tests to confirm or discount other possibilities.
And then there's the irony factor... the next consultation will be on the day that I was bumped from a few weeks ago.
Smoke me a kipper...
