Posts tagged 'Acute Myeloid Leukaemia (AML)'

Upping the ante

Posted by on February 17th 2016 in Rambling on...
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Monday was spent in the Day Ward having bloods taken and tested. Neutrophil level was clearly on the way down (0.28). Sent home.

Tuesday was spent in the Day Ward having bloods taken and tested. Neutrophil level was even further down (0.06). Sent home.

Today was spent in the Day Ward having bloods taken and tested, and having two bags of red put back in. Neutrophil level was way down (0.04), lower than when I was urgently admitted back in December. The doc said that he would admit me, but he was over-ruled by my specialist consultant. Sent home.

Thursday I have to attend the Day Ward yet again, having bloods taken and tested, and probably having a bag of platelets put in. Neutrophil level will probably be rock-bottom. No idea what the outcome will be.

Why no admission?

Well, there's a slight problem on the Haematology Ward...

 

 

 

 

Why the notices and restrictions?

H1N1 Swine Flu.

The ward has 21 beds (4 rooms of 4, and 5 singles). The last time I was given any official figures (Tuesday) there were still 15 patients in there, and 8 of them had confirmed H1N1.

Apparently the plan is to get those 15 safe in order to allow decontamination of the ward, so there is a lot of bed-moving and territory negotiation involving other wards. Looks like new/re-admitted Haematology patients will be going downstairs to Oncology. Where the Oncology patients will be going I don't know.

Until the plan has been executed, it's allegedly safer for me to be at home and to travel to and from the Day Ward every day. I'm not entirely convinced.

Meanwhile, every Day Ward appointment means that Chris has to blag another day off work to drive me and my kit hither and thither. Public transport is a no-no due to infection risk, despite me being the only occupant of the train carriage when I broke the rule on Monday.

Gratuitous mugshot

Posted by on February 14th 2016 in Health, or lack thereof, Just for fun, Pics
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Men Behaving Baldy.

Nick V-G., Uncle Fester and Michael N.

Photo by Nick.

Kicking AML’s Ass: Cycle 2 chemo complete

Posted by on February 14th 2016 in Health, or lack thereof
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Woohoo! - they've finished poisoning me again! Saturday morning I had my final dose of chemo for Cycle 2. It was a "3 & 8" chemo regime, similar to the "3 & 10" previously inflicted. Later they let me out for a short respite at home, partly because I'm in rude health before my blood counts start to crash, but mainly to free up a bed for at least two nights. Back in for a Day Ward appointment on Monday.

It's not much but at least I get to watch the rugby in comfort.

 

 

Kicking AML’s Ass: Cycle 2 begins.

Posted by on February 6th 2016 in Health, or lack thereof
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It's Consolidation time.

My respite came to an end on Friday when they admitted me for Cycle 2 of chemo. To be fair, the consultant was willing to let me have the weekend at home and to come back in on Monday, but I gave him the option of starting early and he took it, primarily because it would be easier for me to get a new PICC line inserted on Friday than on Saturday, Sunday or Monday.

Anyway, we're up and running now. Only 8 days of chemo this time (with the same poisons as last time), so it shouldn't be too bad.

Kicking AML’s Ass: The carrot and the stick

Posted by on February 3rd 2016 in Health, or lack thereof
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Respite.

That's what we all want to hear. It means spending some remission time at home. To get it, all blood counts and infection markers have to be at safe levels. It's nowhere near "healthy", more like "better there than here".

It is conditional... get a temperature-spike, or a snivel, or the squits, and it's "get back to hospital ASAP" time. Get neutropenic sepsis and it's critical, antibiotics within the hour or it's all over, the fat lady sings and I go on to mime at the back of the choir invisible.

And there's the discharge process. That's far more challenging mentally. You may well be told mid-morning that you are OK to go home, but it will be afternoon when your discharge letter arrives, and usually after 6pm when Pharmacy lets you have a full set of meds (whether you already have enough or not) which you may or may not need at home. If you are allowed only 1 day of respite, you've just wasted most of it because you'll be expected back in the next day at 09:00 sharp.

I qualified for respite on Tuesday 26th and left at ~8pm with 2 sets of meds. I'd need to attend for an outpatient blood-test on Thursday morning to check that I'd be OK to have another bone-marrow sample taken on Friday morning. Oh, and I was to bring an overnight bag and all meds, just in case.

They found "elevated infection markers" (high CRP) in the Thursday blood and decided to admit me again. The overnight bag was OK for, well, overnight, but only for the one night. When they decided that I'd be in for Friday night too, Chris had to drive home, gather all I needed for another long haul, and then drive back to hospital. And yes, you guessed it, they discharged me again on Saturday morning, having not found any infection. And they also gave me yet another full set of meds to weigh me down.

I'd need to attend for an outpatient blood-test on Monday morning. Oh, and I was to bring an overnight bag and all meds, just in case. Sound familiar?

Well, once bitten, twice shy. We packed the car with an overnight bag and the huge box of meds (by then I'd got at least 3 of almost everything), and also stashed a couple of long-haul bags (clothing/food/drink/entertainment for a week) to be grabbed if required. We were prepared for WW3.

This time the bloods were fine. No treatment necessary. No overnight bag necessary. No huge box of meds necessary. No re-admission. Just more respite and a blood-test /outpatient appointment on Thursday 4th, when I should find out when I'll have to start Cycle 2 of the chemo (they call it "Consolidation"). No doubt it will clash with the 6 Nations 🙁

I'll take my overnight bag, a few essential meds and no more. If they want all of my meds, they'll have to send a porter.

I think that I broke the rules yesterday. Respite is usually regarded as rest/recovery at home, with the knackered victim patient tucked up in bed having all needs attended to by family/friends/carers. I decided to go off-piste. After a walk into town and back I felt fine. So fine that I then walked to my GP's surgery and back. And just for good measure, in the evening Nick and I walked to the Red Lion for 2 or 3 pints of the black stuff, and still walked back.

Now that's what I call respite 🙂

Kicking AML’s Ass: Counts recovery

Posted by on January 26th 2016 in Health, or lack thereof
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Well, I stayed at the crease for long enough to save the match. If you were in the crowd then I'm raising my bat to you, your support is much appreciated.

The fungal infection never revealed itself despite being hunted via x-ray, CT scan and then bronchoscopy. Maybe we scared it away?

My neutrophil count stayed at zero for a few days and then on Jan 21st I had an inexplicable feeling that something had changed for the better. I mentioned it to the consultant during rounds, he was kind but sceptical. Nevertheless, a few minutes later he was back, telling me that my neutrophils had indeed gone up from 0.00 to 0.12 - that was good enough for me. The next day it was still at 0.11, so still looking OK.

The next day there was no value for the count, so when the consultants did their ward-round I asked for the reason why. Apparently at the weekend the bloods are subject to a different team/process which doesn't give a neutrophil value. I said that I was tracking my progress and was disappointed at not having a count, but the lead consultant haematologist rebuffed me with something dismissive, something like "0.11? It's just a blip. If your counts are really rising after such a short period, you'll be the first person we've ever had who has started to recover so soon. You'll need another week for the counts to start to recover for real." I wasn't overjoyed - she wasn't very inspiring, and I told her so before she went. I also told her that I thought she was wrong, I could feel that I was getting better.

Sunday went by with no count and no problems.

Monday, however, was a peach. A different consultant was at the desk when I asked the nurse for my neutrophil count.

0.31

I asked the nurse to repeat it louder, as if I was having trouble hearing.

0.31!

Nobody dared to stop me celebrating (wandering the ward supping a pint bottle of Magners).

And the counts have continued to rise every day  🙂

For some strange reason, the disparaging lead consultant hasn't seen me since.

 

This post has been backdated from 2nd Feb.
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