Archive for February 2016
Kicking AML’s Ass: Cycle 2 recovery shenanigans – updated 23/02/2016
Today the docs changed the plan again...
I attended Day Ward this morning and the blood tests showed rock-bottom blood levels (basically Hb, newts and platelets were critically low or zero) and my "infection markers" were high, so they admitted me. Luckily they were in the process of reopening Ward 41 (Haematology) after the Swine Flu infection had been eradicated, so that's where I am now.
I just finished consuming a 1 litre (8 hours) of bagged saline drip, and now they want to give me a platelet infusion because I have had a slow nosebleed for at least a week. But there's a problem - my body has rejected the last 3 platelet infusions, and when it does so it also rejects my own so I end up with none, but I still have an adverse physical reaction. I have been saying for two weeks that I need "HLA-matched" platelets, but the docs keep trying to shoehorn in some unmatched stuff with pre-treatment (Piriton and Hydrocortisone) and it just ain't cutting the mustard, I still end up with a platelet count as low as the chances of getting a bacon sarnie in this joint. You can Go Ogle "HLA-matched platelets" if you like, I can't find a decent link.
While typing this, a doc has been in to tell me that he is going to give me unmatched platelets with pre-treatment. I politely sent him back to have a rethink, and he's now on the blower to the blood-bank.
I can't wait to see what happens.
You can bet my life that he won't pre-treat me with a bacon sarnie.
Update 23/02/2016: They don't have any HLA-matched platelets yet, so they are going to try unmatched ones again to tide me over. IMHO it's a waste of platelets, but I'm not calling the shots. I fear it may be "tide me over" in the style of King Canute/Cnut. Also told that I'd be kept in for the rest of the week. And no bacon sarnies 🙁
Wherezat? #2 – now with added clues
While I was in hospital being given Cycle 2 chemo my parents brought me a get-well card to cheer me up. They know how much I like walking in the Lake District and how often I've been there, so the card had been chosen appropriately. "You'll know exactly where that was taken from" was their assumption as I looked at the picture:
Well, I had to admit that it had me puzzled.
The back of the card wasn't much help either:
Well, I was utterly bamboozled - I've been to Buttermere so many times that I should have a fair holding of shares in The Fish Inn, yet I still couldn't place the point of view in the pic.
Yesterday I was sad enough to resort to the map-stash in order to find out more info. It took me over an hour to find out what's really in the image and where it was taken from.
And yes, I had been there long ago.
Are you up for the same challenge?*
Just in case you want to order cards like this, they are available online from the Stephen Ashmore Photography Greetings Card Website.
*So, it was too difficult, eh?
Here's some additional help, in a negative sort of way...
Neither Buttermere village nor Buttermere itself are in the picture;
Only in the broadest sense could the photo have been taken from Buttermere; and
I assume that neither the walkers nor the sheep are still there.
Seeing red
Well, it looked normal on the outside:
But the inside was a different matter:
Needless to say, I didn't eat it.
Apparently the red stuff is some sort of fungal infection.
Oddly, all of the other bananas on the same "hand" were normal.
Simon Beck – Snowartist
So, you like a bit of winter walking, eh?
And making Snow Angels is getting a tad boring?
Maybe you should have a go at this:
Yeah, I can sense your surprise. A post that's not all about me. Make the most of it.
Arse versus Elbow
Friday was spent in the Day Ward having bloods taken and tested, and having another bag of platelets put in. Neutrophil level still zilch.
Sent home.
When I had zero neutrophils during Cycle 1 it was mandatory that I be kept in because they needed to be monitoring me several times a day, the air was super-ultra-mega-filtered, and temperatures were tightly controlled. By "kept in", I mean in the ward. Going off-ward was a no-no while I had no "newts". Going outside was a danger akin to joining a leper colony. Home was an incredibly dangerous place to be, because of the risk of picking up bacterial, viral and/or fungal infections.
Now, with zero neutrophils during Cycle 2, I probably couldn't get admitted even if I contracted rabies and had been run over by a bus. Seems that I no longer need to be monitored around the clock, nor do I need super-ultra-mega-filtered air, nor controlled temperatures. Home has not changed, but Home is now good, together with the exact same risk of picking up the exact same bacterial, viral and/or fungal infections.
Seems that the required care regime has been edited to suit the circumstances and is suddenly much less directly related to the severity and consequences of the illness.
I do wish that they would start singing from the same hymn-sheet. One that has been agreed and approved by everyone in the loop. On Wednesday the doc said that he would admit me, but he was over-ruled by a specialist consultant and I was sent home with instructions to continue to attend Day Ward every day. This afternoon a different doc said that the daily visits to Day Ward would continue through the weekend and into next week, but she was over-ruled by a specialist consultant and I was sent home with a different plan - only attend Day Ward on Monday, Wednesday and Friday. Oh, and I'll be getting another 2 cycles of chemo just for good measure. They way things are going they won't have me in for the chemo, they will send it by post and I'll have to pay the local plumber to administer it via an implanted radiator valve and some old garden hosepipe.
I'm trying to keep a lid on my temper whenever they change the plan, but I'm not known for my tolerance of such shenanigans.
More details
The Beeb now have hold of the story...
Leicester Royal Infirmary closes wards over swine flu.
Still no signs of the disease in yours truly.
Neutrophils now 0.00 again (as per Cycle 1), so no infection resistance. Was in Day Ward again today, was sent home yet again and was informed that the daily in-out would continue into next week.
