Started off my Sunday feeling quite chirpy, having had a fair amount of sleep and looking forward to seeing some friends 🙂 Had an indulgent shower as no one else seemed to be bothering and cracked on with the iloprost; new cannula was put in – so smoothly I didn’t actually realise the nurse had done it! and I went straight in at level 3 today as I am hard as nails.
Then things went a little downhill with a dressing change this morning. The last time it was touched was a temporary dressing put on in the early hours of Friday morning when I had my little oozy meltdown. Given that this was now Sunday morning, I felt like this was long enough to leave Death Toe without seeing what sort of trouble he was getting up to. I had a hefty wack of oramorph beforehand, as it was still very sore without any contact being made at all and peeled off all of the layers of padding to find that Death Toe has gone much more sticky and raw on the top side since stopping the inadine on thursday night – underneath still looks similar, that being a black necrotic mess with not a lot of live toe going on. The whole thing is not very photogenic and looks a lot more like what I would expect from a little brat that is on the edge of a full blown infection. The plan for today, with it being Sunday and no consultants in, was to get a quick check and then get on a hydrocolloid dressing to start loosening up all of the dead necrotic mess before a proper check tomorrow – and ultimately to get as much of that cleared as possible to get down to any live viable tissue that is left. Funnily enough, since this morning, with a different kind of dressing and bandaging etc. it has got steadily more and freakin painful all day. I would go as far as to call it… toeture… (It hurts to do that, but my Dad spent about half an hour compiling an extensive list of toe puns the other day and would be sad if I didn’t start using some. Dad gets all credit blah blah).
Including the swab from the meltdown, there will now be a massive list of test results and scans etc. piling up and I have a very extensive list of questions for when I get to see someone tomorrow. Also, still not sure what the intended treatment plan is, regardless of whether or not infected, but having had quite a lot of third party advice and information over the weekend, I am determined to request a referral to Addenbrookes to the UK specialist team in vasculitis. I am becoming increasingly scared about my current condition and the lack of earlier action and earlier concern over the state of Death Toe, which is partly why I was having weepy fits all weekend. Also, not being an idiot and perfectly capable of putting bits of information together, it is very apparent that this is not just a severely buggered toe, but also increasingly extensive nerve damage in all four limbs caused by damaged small blood vessels.
On a more cheerful note for a few minutes, the weekend on the ward brought a more relaxed vibe. My bay in particular is very civilised – no one is especially acutely ill or a troublemaker (of which we have many!) and no one is on fall watch – down near the mens’ end, they have an entire bay for men who are unsafe on their feet, but keep getting out of bed. The staff were telling me today that they take it in rotating hour shifts (particularly at night), to sit in the bay and continually have to run interference and a return to bed system.
In my bay, there is one woman who can’t speak, but she is still involved in all of the conversations and whichever staff member is feeding her will be chatting to her at the same time as to me and the woman in the bed next to me. Some of the lassies in particular are really naturally wonderful with some very vulnerable patients; it warms the cockles of me heart so it does!
We had a nice chilled time in the afternoon; once all of the assisted dinner time feeding is underway, its a chance for the staff to have a two second breather after serving everything up. Today we were discussing how appalling I am at distinguishing beween english regional accents – eg. couldn’t pick out the Manchester lass! – and equally how they lump all of Scotland together as having one accent, when I can’t actually understand many people from the depths of Glasgow!
One of the nurses had me in hysterics – she has a blister on her bum from an ingrown hair (none of us pretend to have any dignity or pride on this ward haha) and was suggesting she goes and bribes someone with a cupcake to lance her arse during her break 😀 Toeriffically amusing… (all credit to Dad blah blah 😉 )
Today was lovely for a spate of visitors – the word clearly made it out regarding my disinterest in more fruit; Ki brought me in the world’s most excessive tube of smarties and dubbed the little shit attached to me ‘Necro Appendage’ – I think this will be Death Toe’s Sunday name as it sounds much more formal!! Also had one of my not-actually-a-real-aunts drop in for a hug and delivering a proper trashy magazine stash – and then topped the day off with a McDonalds delivery from two of my most favourite women. There was much hugging and telling each other how much love there was, smelling each others hair etc… We are a strange bunch – and only one of us was high on morphine 😀 Meant I had a chance to catch up on the week’s news from home, as well as have a run through all of my growing worries and got some lovely reassuring reasoning back, as well as a memory stick of wonderous things!! By that point I had had all of the painkillers, but was rocking with pain – as I am now actually, and it was strange and disconcerting to see the pain from the outside suddenly, as is only really possible when you are with a close friend.
Blehh. Assuming because I am now dealing with a sticky raw oozy wound, effectively over entire surface of the toe – with hell only knows what going on inside it – it has gone off the charts this evening… Not quite sure what to do with myself; was trying to explain before to some of the ward staff why I keep getting up and pacing aimlessly. I can imagine it seems weird when it is my foot that is sore! but its like this kind of burning nerve pain ceates a massive adrenaline surge. Hobbling determinedy round in circles, or up and down the corridor stops that building to the point where I tip over into what I have dubbed ‘the pain shakes’ and a delightful friend would describe as ‘shaking like a shitting dog’ (sadly, quite accurate if you have ever had the joy of witnessing that), and I’d rather not go into full scale nerve overload.
Typing really helps for the same reason – which is where this blog grew from! As long as I am typing, it is distracting my brain from what the foot is screaming at me – and as soon as I stop, its either get up and pace or make whimpery noises and lose my shit Sadly I think my tendancy to be a bit flippant when requesting amputations for the last few months has resulted in them thinking I am not being serious. I really really really am… I have a dead bit of crap pretending to be a toe attached to me, causing me non-stop grief. Please just chop the little brat off >.<
Speaking of blog – nearly 500 visitors and nearly 900 views :O Whaaaaaaaaaaat???!!!!