So as previously mentioned, Day 5 saw the continuation of the beloved iloprost infusions. Once again, nailed it – got to intensity level 5 and didn’t vom! 😄 No sooner had I finished than I was in a wheelchair (damned good thing as horrendously wobbly for ages after!) and taken down for mri of my foot. Previous mris were so much fun – this one was agony, even still flying on oramorph from the iloprost sesh! Had foot against vibrating, thudding plate for what felt like 30 mins at least. Can’t move foot despite white fire and electro spasming… Bear in mind bottom of Death Toe is utterly buggered and necrotic and so sore not even Dr has been allowed to touch for a few months… Many tears and teeth marks in hand 😣
Yesterday improved a bit though as then had an ultrasound of both arms and both legs – I really like the gel – it is messy yes but very gloopy 😆 and it was warmed up 😄 Now the ultrasound itself was very interesting as well – showed good strong flow, but also showed definite damage to the small blood vessels in both arms and both legs, which would be very consistent with the cryo diagnosis. Have decided that until someone talks me through that in more detail on Monday I will try not to panic any more than I already am… 😕
Dinner (Tea? Call it what you want, doesn’t change what it looked like!) was really quite icky Friday night:
Called itself chicken curry, but had a lot of room for improvement. Usually not so scathing of hospital food, but that meal really irritated me!
After how sore the mri had been and various worries building up over the last few days, I had a pretty weepy few hours and my fave night nurse was talking me down at one point as well as dosing me up on oramorph to knock me out for sleeping. Which worked – I slept about 7 hours in two chunks – broken as you can see with a top up in the below screenshot 😀 Now I have discussed in the very first post the perils of talking to people when baked off your noodle on painkillers… In this instance, I had decided after dose one already to call oramorph (which comes in a little plastic syringe of clear liquid magicalness) ‘fluffy cloud’ or similar and then decided that my friend was wanting to get all of my nurses to himself 😀 *hilarity ensues…*
Today (Day 6 inside!) was a Saturday, so I had completely new staff to irritate 🙂 Iloprost again went very well, but the cannula had by this point now done three infusions and was starting to get sore. Ideally I would have listened to myself and asked to have it taken out yesterday, when I first suspected it was knackered, but hindsight is a bitch 😉
As it is, went to get cannula removed once done today, only to realise that I was effectively having to wax my arm as it was put in my forearm. Now I am not one of those lassies blessed with fine delicate body hair, and removing it took a lot of hand biting and growling ‘just do it, just do it fast’ at the poor nurse 😀 A fair bit of my arm has a bald strip now and it hurt more than Death Toe for a while!! In all seriousness, if ever a cannula is sore, get the damned thing removed and don’t use it for another infusion… Especially if you are prone to infections and being delicate. The needle entry site and above has now been tender all day and has a very troubling little red flush above it… Cellulitis can go and feck right off if it thinks it is getting any action!!!
The rest of today was spent in a fug of catching up on all of my notes I keep having to make to compensate for brain fog… and then I had some wonderful visitors as well 😀 My Grandma insists on bringing me a year’s supply of fruit and is incredibly miffed I have refused MORE grapes, despite having not finished the last lot and her having just brought in a huge box of some tiny orange thingys… Some of my baby cousins dropped by in the evening and we had a very unsual game of hide and seek in the day room, with Francis the balloon giraffe (organised by the 2 year old, I swear), made all the more entertaining as I was freshly cooked on painkillers 😀 Finally, my fave ladies have confirmed they are descending tomorrow and I am going to hump them very hard and bawl all over the place ❤