Was about to start typing up a rather grouchy two day update this morning – had in fact already started drafting it up… Has turned out to be a very positive action packed day! – That being said, the negative is getting recorded for my own benefit as well as for the simple fact that this is not a pretty little fairy tale and does in fact involve toes falling off… But this time there is a happy(ish) ending 😉
I began yesterday (Wednesday) in a pretty vile mood, with regards to the lack of Dr contact and updates and a whole passel of negative results, which as far as I could tell meant Jack. One of The Three Musketeers came to see me pretty early on (this is on Wednesday morning) and I was pointing out that what we amusingly get to refer to as morning stiffness had absolutely walloped me. I felt like my back had been twisted all night and my hands took quite a bit of warm water to flex out of claw formation. This saddened me as although this was fairly common practice for waking up throughout last year, I have had a good few months where I really have not suffered overly much with the joint and muscle pain. Having claw hands was an unpleasant reminder of how much nastier this can get in terms of day to day impact than just ischaemic toes and fingers.
I mentioned the cryo test and the biopsy and I said as far as I was concerned the results didn’t mean a lot, due to the specific cryo procedure having not been followed – he confirmed that the biopsy had basically showed nothing interesting at all, which because it was of a definite livedoid rash area means the sample probably wasn’t big enough or deep enough. I said I would appreciate an update on the referral and brought up that I had had a particularly shit weekend… I then cried AGAIN! I am absolutely shitting fed up of crying in front of relatively strange male Drs first thing in the morning! They said my Dr had passed on that no contact so far and that they would make sure she knew I wanted a chat. Updated bloods got taken then pretty swiftly, as I pointed out they hadn’t been done for a while and confirmed that my toe was seriously manky when the dressing was changed on Monday. These were already back as of yesterday evening and showed low white cell count, which when you factor in the appearance of my little friend means that a localised infection is basically a given again.
We managed to schedule DT dressing change for when my Dr could be around – she has not seen DT in person I don’t think since before I was admitted, but her and her team have instead been shown The Gallery of Death whenever they wanted! I showed her the weekend and Monday pictures and it was plain to see how it went from being drier and black and necrotic on Monday again (after THE SOAKING) to being gunky and wet and looking very infected. It is also a lot sorer in the way that I am beginning to sadly associate with infection. In some senses it was a very productive dressing change as she could see how much of a mess it remained – I got a referral on the system for today to talk to the vascular team about an imminent toe chop plan! This in itself was exciting, but then also in the meantime confirmed that the referral would be chased as urgent and with comment that patient wants to be seen down there as an inpatient. I had very much thought that this had been understood from as long ago as June when first discussed, but this is maybe the folly of trusting in a conversation rather than insisting on things being confirmed in writing from day one. Has only cost me one toe!!
I didn’t even get to the point of raising the cryo properly but this is now basically irrelevant… as! Mum texted me earlyish this morning with a cryptic ‘may have some news’… Which I assumed was going to be about my exciting brothers or Dad and someone else doing something different… Mum had got on the phone to Addenbrookes to chase up my referral and appears her phone calls apparently crossed in the air with it being faxed! By the time she rang me, it was to confirm that Addenbrookes were contacting the Ward here to confirm I should be discharged tomorrow and that if she could get me down there by clinic hours tomorrow I could be admitted 😀 This has been the dream and continually frustrated plan of about four/five weeks in the running now, so I have now spent the whole day in super shock, alternately grinning like a loon and upending six weeks worth of crap onto my bed and wondering if they accept pringles as necessity items… I had some awesome visitors to celebrate without through the day… I also went for a follow up eye exam and due to how zonked I was (as demonstrated by me sleeping in the waiting room), was sent back to the Ward in disgrace 😀 Apparently you need to be awake to do an eye test… Right. Sleep!! Moving myself and a certain infected manky shitty little digit down South tomorrow!!! Noooooooooo weeeeeeeeeeeey!!!!
P.p.s. It was Mum doing the whispering 😀 Don’t mess with Mothers!!!
P.s. Have a sloth fact for featured pic. I had a few…