Tuesday 30th April, 2019

All dressed-down and nowhere to go

Posted by at 11:45 pm in Health, or lack thereof.

Time for a short update... my conditioning treatment has finished and I'm now confined to my room on the BMTU because I have no infection resistance whatsoever - not just no neutrophils, but no antibodies, no T-Cells, no D-Cells, no Triple-A Cells, no Splinter Cells... you get the idea.

Let's hope that my generous MUD Donor makes it through the harvesting process - I know it's unlikely that the process won't complete, but me and "the unlikely" have a bad habit of meeting head-on far too frequently.

Fingers also crossed for whoever gets the job of transporting the harvest from there to here ASAP - I'll be prepped and waiting sometime from mid- to late-afternoon, so I've been told.

It's going to be a testing and interesting May Day - I think a hearty Fried English will be ordered at first light.

 

Half Man Half Hickman

Friday 19th April, 2019

Two shades of grey

Tags:

Black(ish)bird:

Wednesday 17th April, 2019

The Tomorrow People

Posted by at 9:38 pm in Health, or lack thereof, Just for fun.

Well, I attended Glenfield Hospital yesterday for the heart function check. I passed that OK... contrary to the specialist nurse's opening gambit of wanting to up my daily dose of Ramipril and start me on beta-blockers (and possibly statins) it turns out that my heart's in good enough nick to proceed to SCT so they're not going to mess about with the current drug regime.

Today I attended Glenfield Hospital again, at stupid-o'clock in the morning, for the bronchoscopy. I explained that I have had no symptoms of lung infection since the CT scan weeks ago, that my infection markers were still right down, and that I was feeling in fine fettle. Suffice to say that they did the bronchoscopy anyway and now my lungs hurt, my throat's in tatters and my eating ability is trashed. As predicted yet totally avoidable, IMHO. Results are pending but I think we know what the outcome will be.

While I was wandering the broncho unit recovering from the sedative and from the local anaesthetic I got a call from LRI... an appointment has been made for me to go for a "missed off the to-do list" breathing/lung function test tomorrow, and guess what... yet again it's at Glenfield Hospital and yet again it's at stupid-o'clock in the morning. Incredibly, they really do want me to go for a breathing/lung-function test less than 24 hours after having my lungs and airways aggravated by a camera on a bendy stick! I was so angry but I was unable to talk clearly - I had to hand the phone to Chris so that she could talk sense to them.

Back home and the phone rang again... it was LRI again... an appointment has been made for me to have a "missed off the to-do list" Bone Marrow Aspiration at LRI and guess what... that's tomorrow morning too! After the breathing/lung function test we're expected to jaunt from one hospital to another in the blink of an eye.

So... FOUR out-patient appointments within FORTY-EIGHT HOURS at TWO hospitals over THREE consecutive days... whoever "planned" that lot needs to be introduced to the simplicity of Gantt Charts.

In case you missed it in my previous post...

the whole process has been "planned to within an inch of my life".

Yeah. Right. If you count "planning" as "shoe-horning everything in before the Easter weekend".

My period of respite is swiftly becoming a period of spite.

Saturday 13th April, 2019

Mayday! Mayday!

Posted by at 7:08 pm in Health, or lack thereof, Just for fun.

The game's afoot... a suitable, willing and generous MUD (Matched Unrelated Donor) has been found and a date has been set for my Stem Cell Transplant. I'm told that the HLA "match" between me and my MUD is 10/10. I've also been told that my MUD is male, 24 years old, living in the UK and that we have different blood groups (he's B Positive, I'm O Positive).

On Tuesday 9th April I attended the "work-up" appointment where I was checked over and when the conditioning and SCT processes were described in great detail. To quote the Red Team consultants, the whole process had been "planned to within an inch of my life".

Well, within seconds I'd found a gaping wound in the plan, which had me attending Hambleton Suite on April 22nd for a Hickman Line insertion swiftly followed by admission to the BMTU for the start of conditioning chemo. Odd looks were exchanged when I asked if Hambleton Suite would be open for business on Easter Monday. As I suspected, based on my experience of Bank Holiday closures in 2016, the Suite will be closed for the Easter Monday Bank Holiday.

The knee-jerk reaction was to have me attend Day Ward on Easter Monday to have a temporary cannula inserted for the first day of chemo. I vetoed that immediately - I'm not the easiest person to cannulate and I've seen the damage that can be done when chemotherapy drugs leak from a poorly-located cannula.

Suffice to say that their latest plan has both the Hickman Line insertion and the start of chemo scheduled for Tuesday April 23rd. Yes, that's St. George's Day - not a Bank Holiday here in England despite many a campaign. But at least the Hambleton calendar now has Easter pencilled in. I wonder how many other clinic appointments they have had to change due to the oversight of something that has been a calculable date for nigh-on two millennia.

Oh, and some of my "few days of respite at home before kick-off" have been claimed back by the NHS - I'm to attend Glenfield Hospital on Tuesday 16th April to have my heart function checked, and again on Wednesday 17th April to have my lungs checked (yes, I cut them some slack regarding the bronchoscopy - now they owe me). Sometime before Easter I should have a breathing test and another bone marrow aspiration but so far there's been no word as to when they will be. I reckon they'll be out of time before I'm out of breath.

Anyway, the rest of the plan seems OK to me. I will be on the "FluBu" conditioning regime... Fludarabine 23rd - 28th April (was 22nd - 27th April), Busulfan 23rd - 25th April, Clonazepam 21st - 28th April, Thymoglobuline 25th - 30th April, Stem Cell Transplant on 1st May.

It's a good job I don't fast during Lent - starting on Tuesday 9th April I'm supposed to be getting through two of these bottles every day for at least a month:

 

Forty Fortisips

Wednesday 3rd April, 2019

Can of worms

Posted by at 7:09 pm in Just for fun, Lost in translation, Name and Shame.

Pay attention, Class! Repeat after me:

"I before E, except after C"

 

 

Yes, I know that there are many exceptions to what Edward Carney called "this supreme, and for many people solitary, spelling rule", but this isn't one of them.

Caring at its best, spelling decidedly dodgy.

Tuesday 2nd April, 2019

Observing Report 1st-2nd November 2018 part 2 (Scooby-Doo v3)

Posted by at 9:11 pm in Observing Reports.

Still wading through the backlog of astro-data that I'd been meaning to either process or bin.

Here's another result from way back in November last year, I think it's much better than my similar images from 2008 and 2017:

 

M45 - The Pleiades, in the constellation of Taurus. 2nd November 2018.
Subs: 25 light @ 300s, 50 dark frames, 50 bias frames.
QHY10 on the C80 ED-R Frac, guided with PHD.