Janet's blog

 And here we are again. Slowly habituating but the periodicity of this trial quite hard to get used to. Cycles are 4 weeks with two infusions per cycle and days are labelled from 1-28 - Day 1 is an infusion day but in reality you have to come in for bloods and Covid swab on Day -2 and for clinic on Day -1 so the official timeline doesn't count true against the actual one. And the trial requires all sorts at nearly all times during the first cycle. The last two weeks have seen the supercold blow through - sore throat, feeling kicked in the back, hot and dry wakeful nights, streaming from one nostril, streaming from both nostrils, snotty cough, and out the other side. Just in time to allow a couple of hours of energy expenditure at the allotment before it was time for ... Covid jab to the left (ouch) and flu jab to the right (painless),  followed by general poleaxing again. Not as bad as after the second jab but achey legs and sofa time with the sore Covid arm a sleep intruder....

 Well - so far I've felt a lot better than on the previous carboplatin + extra poison regimes. Domperidone and dexamethasone keeping on top of nausea nicely - tempting to think of not taking them, but prevention probably the best thing. Haven't needed to take ondansetron in the night although slightly nauseous when awake. Which has been quite a lot of the time as the dexamethasone seems especially active this time around. 😮Didn't even lie down on the sofa yesterday - instead did continuous pottering in the kitchen - made an inventory of what was in the freezer, a pan of minestrone, a not-very-good batch of sour dough, a tray of  flapjacks, and prepped and juiced a lot of allotment apples before they went completely mouldy.  This with the juicer obtained from our street WhatsApp group which has turned into a recyling site. I found a home for the boy's prom suit there the other day - with a twinge of regret as he had looked so handsome in it - but a 25-year old is just n...

 Because of the  undignified toilet requirements of this disease, I haven't promised to be in by 9am but have said I will try for 9:30. I manage 9:35 after a good run in on the bike with most roads reasonably clear. Maybe people are still chary of driving with petrol a bit uncertain still in London.  It's still leaking here even though it's not raining today. As well as a group of yellow buckets catching ceiling drips, there's a collection of cloths under a window. Vitals and 12-lead ECG has to be done before the pre meds and infusion. They also do a Covid swab, which as things transpire is probably a good thing - see next entry. Because EP0057 is tough on the bladder and associated with cystitis and bladder infections, there are even more fluids to be taken on board than usual. In this order: iv hydration with saline, oral ondansetron and ranitidine, iv dexamethasone and chlorpheniramine, iv glucose, EP0057, more iv glucose, more iv saline hydration. This is all associ...

 Dear me, another long day! 09:44-15:00 for a 10:45 appointment.  It's taken a last-minute Covid glitch to break a paralysis of the blogging neurones. There have been previous Covid glitches affecting the smooth running of the chemo machine I recall and maybe it's almost compulsory now.  Christopher went walking in several days of Lake District rain a week ago. On Sunday night he started doing a little cough, then another , then another. And it was the same on Monday morning. It was definitely new, but was it continual, or persistent? Lateral flow test was negative, but instructions said PCR was needed, so off he drove to a drive-in centre that he had to walk into. In the meantime, I did a lateral flow, also negative. All this was immediately problematic and highly stressful as I was supposed to be going into the Macmillan Centre at 10am for my pre-chemo Covid swab and bloods. I did nearly have a melt down over it beause the symptoms have been getting less manageable and ...

 I read the trial paperwork and sent off a mix of about 30 questions and statements for confirmation which Christopher said were incomprehensible. I admit they were done in a state of high anxiety but I dispute that they were incomprehensible. Answers sent back in writing weren't hugely helpful and in-person follow-up not much better. There's a lot of reference to different people reacting in different ways and no real steer on the symptom timeline during the fortnight between infusions. But it does seem that one of the mechanisms of the nanoparticle is to gather perferentially around cancer tissue, and therefore have more chance of getting taken up  by cancer cells. The Wikipaedia article on nanoparticles in chemotherapy refers to this as the 'enhanced permeability and retention effect'. I assume some make their way to normal cells (and make you feel like crap) but like most chemo agents, it is more toxic to cancer cells due to their higher rate of divisison. I did try...