Saturday 6th February, 2016

Kicking AML’s Ass: Cycle 2 begins.

Posted by at 12:27 pm in Illness and injury.

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.

Wednesday 3rd February, 2016

Kicking AML’s Ass: The carrot and the stick

Posted by at 3:06 pm in Illness and injury.

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" 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 :-)

Tuesday 26th January, 2016

Kicking AML’s Ass: Remission

Posted by at 1:56 pm in Illness and injury.

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.

Saturday 23rd January, 2016

Kicking AML’s Ass: It’s what we call a “Shake ’n Bake” colony

Posted by at 10:22 pm in Illness and injury.

Well, there I was, breezing through the days, padding away all of the bugs, when I was informed by both umpires and the TMO that I had picked up a fungal infection. They suspected that it might be the cause of the slight wheezing in my lungs, and weren't really open to the idea that the wheezing might be a natural purging reaction to my packing in the cigs after 30+ years.

So they decided to give me IV antifungal treatment. Amphotericin B. A low dose for an hour to see how I coped with it, and the rest of the 100ml bag over the next hour. It went down well, no bad reactions but it did make me a bit nauseous and my temperature started to spike. That was enough for them to decide to change weapons. Out with the Amphotericin, in with the Caspofungin, to be preceded by IV Piriton to prevent any nasty allergic reactions.

Well, all that went well for a dose or two until, for some reason, I was given the fungicide without the Piriton...

My depleted body started shaking violently, and I still don't know where it found the energy to do so. I had to bite the sheets in order to avoid breaking my teeth and biting through my tongue. During the shakes I managed to snag a cannula, resulting in much spraying of blood. High temperatures and shaking chills (leading to the medical slang term "shake and bake"), vomiting and a totally-warranted session of Tourette's for at least 15 minutes all led to me being a right mess with headaches, aching limbs and drained muscles by the time the antidote and oxygen had fully kicked in.

I remember thinking that I'd reached the end of my mortal coil and was hanging there staring the Devil in the eye. I'd never experienced such uncontrollable pain, and was sure as hell not going to go through that ever again.

Or so I thought.

Unbelievably. a day later it happened again, with almost exactly the same results. At least I knew which words to bellow out as loud as I could while descending to Hades:

"Where's my fucking Piriton?"

Or something like that but less polite.

Sunday 10th January, 2016

Kicking AML’s Ass: No needle in my haystack

Posted by at 8:12 pm in Illness and injury.

My latest blood test results say that I now have full-on chemo-induced neutropenia.

The generally-accepted healthy reference range for absolute neutrophil count (ANC) in adults is 2.5–7.5 x 109 cells/L of blood. Any ANC of <1.5 x 109 cells/L is considered neutropenia, but <0.5 x 109 cells/L is considered severe.

I have 0.00 x 109 cells/L - none - zilch.

So I'm open to any infection that nature bowls at me, I have a broken bat, and I need to stay at the crease for another 3 weeks. If each yorker, carrom ball or googly can't be padded away then my stumps will be uprooted, the bails will be off and I'll never play for the First XI ever again.

It's a sobering thought. I'll sleep on it.

Friday 8th January, 2016

Kicking AML’s Ass: In Room 101

Posted by at 11:52 am in Illness and injury.

"You asked me once," said O'Brien, "what was in Room 101.

I told you that you knew the answer already.

Everyone knows it.

The thing that is in Room 101 is the worst thing in the world."

 

The trademark beard has started to fall out.

I might need to rename the blog.

Thursday 7th January, 2016

Kicking AML’s Ass: The eyes have it!

Posted by at 1:46 pm in Illness and injury.

Well, yesterday the ophthalmologist assessed my eyes and found minor damage to the retina in the right eye. It's nothing to worry about and it's not the cause of the photophobia - she couldn't pin down a cause for the increased sensitivity but she will continue her investigations. Basically, it's a "wait and see" scenario :-) with an outpatient appointment (LOL) two weeks hence.

I spent the afternoon and evening with huge pupils due to the dilation drops, the nurses said that I looked like the cat from Shrek.

 

Tuesday 5th January, 2016

Kicking AML’s Ass: Squint – squit – quit

Posted by at 12:16 pm in Illness and injury.

They all say that I am reacting well to the treatment and that my blood-counts are on the up, so that's good news.

The not-so-good news is that for some reason I have developed a selective photophobia. I've had a similar thing a few times before when accidentally exposed to welding glare, in the trade we called it arc-eye, the proper term is Photokeratitis and that is due to exposure to strong UV emissions. Anyone who has ever had it will know just how excruciating it can be.

This time, however, it's different. I'm fine with most light sources, but the strip-lights in the ward corridors and rooms are driving me crazy. The Wikipedia page for photophobia lists chemotherapy as a cause, and the docs are going to get an Ophthalmologist to take a peek at my mince-pies. I thought that their interim advice for me to "keep an eye on things to see if they get worse" was a tad droll.

Oh, and the combination of high-sugar, high-carb, high-protein drinks, antibiotics and a new dietary regime (at odds with the diet recommended by the cardio peeps) has given me the raging trots. I tell you, I could shit through the eye of a needle!

So you can imagine the scene... a temporarily blinded man racing down an obstacle-filled over-lit corridor to get to the over-lit toilets...

Some you win, some you lose  :-(

Can you tell that the prescribed NiQuitin Step 2 nicotine patches aren't quite cutting the mustard? Still, they are better than nothing - I had to wait 3 or 4 days for the first lot of patches, and when they arrived they were Step 3 when I really should have been started on Step 1. I'm down to 2 ciggies a day, I think that's a major reduction and I feel quite triumphant. Others have their own opinions, but generally they have never smoked and don't understand how difficult it is to kick a 30+ year habit in such a short period of time.

I would like to give up completely, but the boredom here now, and the prospect of another 4 weeks of it, are not exactly conducive to a measured, managed and controlled withdrawal from the ubiquitous South American herbal remedy. Oddly, the staff here consider e-cigs to be a total no-no due to the lack of scientific evidence of their safety, despite the lack of tar and particulates found in "proper" smoke.

Apart from that, I'm fine. Honest!

Sunday 3rd January, 2016

Kicking AML’s Ass: Phase 1 complete

Posted by at 12:50 pm in Illness and injury.

Woohoo! - they've finished poisoning me!

This morning I had my final dose of chemo for Cycle 1. For the next four weeks I will be playing the waiting game while my system attempts to reboot. Hopefully there will be no BSOD - the odds are in my favour at about 80:20 (some sources say 85:15).

For those who are interested, I've been on a "3 & 10" chemo regime. That means 3 days of Daunorubicin (days 1, 3 & 5) combined with 10 days of Cytarabine (days 1-10), all given IV up a PICC Line. The Daunorubicin was an hour per bag, looked like Irn Bru and made my piss the same colour, which was a tad disconcerting at first. It also made me nauseous the next day. The Cytarabine was a syringe job taking only a few minutes, it was clear stuff which stank. I had a persistent slow nosebleed which meant that some Cytarabine leaked into my sinuses and throat when they administered it, the smell of it was slowly sending me around the bend. It also gave me a lovely chemical burn down the throat.

Anyway, the nosebleed has stopped because they gave me a platelet transfusion last night. And I will get a haemoglobin transfusion later today which will perk me up a bit.

per ardua ad alta, as they say at my alma mater.

Tuesday 29th December, 2015

Catch-up #3

Posted by at 9:42 pm in Illness and injury, Rambling on....

When Santa asked me what I wanted for Christmas this year, I said that I'd like some Turkish Delight and that would be enough.

Well, I got the Turkish Delight, but I wasn't expecting to be sitting in hospital scoffing it while being pumped full of chemo drugs on Christmas Eve.

Acute Myeloid Leukaemia (AML).

Bugger.

Blog Widget by LinkWithin