EP0057-201 Phase 2A Trial - Cycle 5, Day 15, tenth infusion day - 3 March 2022

 Haemoglobin was 97 at Tuesday clinic. Resistance offered by Highgate North Hill to being cycled up today suggests it has dropped further, but options are few on a tube strike day and it has been even harder work! Traffic on Tuesday strike day was epic - the jam started outside the closed gates of East Finchley station and fumed ahead all the way to the Macmillan Centre. Just a few gaps to allow some eejits to roar past in a cloud of particulates before coming to a finger-tapping halt at the next traffic regulation measure.  Traffic lighter today; most anxiety induced by a bloke who had either never ridden a bike before or who had forgotten how - using up a lot of unavailable road zigzagging to get his balance then thinking he could squeeze between a couple of shiny apples of their drivers' eyes without provoking a flurry of F words - he couldn't. The other stand out indicator of a strike-day cyclist is the accompanying sound of a maintenance-free bike - the squealing brakes, the rasping chain and/or the tinkling of derailleurs failing to find their home sprocket. Still, it's a great opportunity for these apprehensive riders to discover the joy of two wheels and a reliable arrival, and never go back!

So, Hb 97 - treatment goes ahead today even if the Hb has dropped since, which it feels like it has. Think this will be a fortnight of being increasingly wiped out. Cleared up one slightly confusing thing having been told on different occasions that the Hb threshold was first 80 then 90. It turns out that it's 80 on the way down, but 90 on the way up post-transfusions. So as I'm on the way down now, I'd have to get right down to 80 before foregoing treatment and getting another transfusion. Once the transfusion is given it has to get back up to at least 90 before treatment can be reinstated. 

It's very quiet here so far - one nurse said they have loads of patients booked in with many unable to make it in to the Centre yet. My nurse, who also cycled in, says she saw someone punch someone else in order to get on a bus. Bring back the orderly queues of yesteryear ...

Have to report that it's all gone a bit pear shaped today. Had just started the hydration/dexamethasone drip stage, gone to the loo, and while washing my hands, felt a definite and new pain where the cannula goes in. Managed to find my nurse who confirmed extravasation - you could see a bulge around the cannula area where the fluids were going into the tissue instead of the vein. Luckily it wasn't at the chemo stage which might have been extremely painful. Dexamethasone isn't an irritant so its OK to let it gradually reabsorb. Apparently, chemo has to be milked out, like snake venom, then they use cold compresses for pain etc. 

That created a delay while another cannula was fitted which took a couple of tries. I then went to chlorpheniramine sleep while the hydration went in and didn't wake with the pump alarm. By the time the nurse had come back to me, put the glucose flush through and the two-nurse-plus-PC check of the chemo took place, the EP0057 was orf. I thought it had a four-hour shelf life once made up; trial practitioner now says it's six hours, but in any event it was orf and the pharmacy were adamant it could not now be used. This seems to have been the Sod's Law day when the EP0057 was made up and waiting for me - every other day, when there have been fewer delays, we've been waiting for it.

Apologies from nurse, nurse manager and trial practitioner all round. I'm all premed-ed up and therefore fit for very little, so will need a lift home. Negotiations around rescheduling the treatment with least delay, taking more bloods as Tuesday's will be too old now etc take ages, so this ends up being one of the longest days I've been in, even without treatment.... Back tomorrow afternoon - oh joy.