Mayday! Mayday!

Posted by @ 7:08 pm on Saturday 13th April, 2019.

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.

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

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