So I posted a belter on Saturday morning; I won’t lie, I read back over it last night and made an impressed face at myself! Friday had involved eye tests, a camera getting crammed up my nose/down throat… and a proper bit of a cliffhanger with regards to the cryo diagnosis as I had ANOTHER cryo test returned as negative.Upon looking into the test a bit further, as per the edit to the end of the previous post, I am highly doubtful it was carried out as intended or even where it was intended to be done…
I had then originally intended to post further Saturday night under the heading “Kath can’t sleep as Death Toe is kicking off” or similar, but ended up a writhing pain mess… Which kicked off the beginning of our wee absence! I didn’t really anticipate causing a disturbance in the group – hearing a few of you asking after me in terms of wondering if I am ok is both touching, but also makes me feel the need to confirm that I do definitely remain surrounded by nurses even at the weekend and although I am witholding Toe updates, it isn’t necessarily down to anything sinister having happened!! 😀 If anything dramatic DOES happen, I will make sure that someone in my real-life vicinity gives periodic updates through facebook, so everyone gets their Death Toe newsflash 😉
I had had a fairly lazy Saturday morning with what almost counted as a lie in and then had a whole heap of drama teasing off from the mid-afternoon onwards. One of the weekend nurses drew the short straw to get up close and personal with Death Toe and decided to go old school. This meant a cardboard pooper box of warm water and some kind of TCP type thing – is betadine a thing? Yes, that one! Now please bear in mind firstly that Death Toe usually gets showered – and has done since July at least! – in a plastic full leg sock… The dressings I had on since… April maybe, were of the inandine, ‘keep Death Toe as dry as possible to avoid infection’ nature. SO, even just plonking Death Toe into (some quickly cooled down further) warm water was traumatic for everyone involved. The last time I had digital ischaemic ulcers anywere near warm water and TCP they were infected gunky wounds that stung like hell, so there will also have been an element of conditioned response, but I was struggling to relax and let Death Toe have his first swimming lesson without sploshing the floor… Oramorph will have been helping by that stage as well, please do remember that, but there was a whole load of weirdness about this dressing change that made it a bit of a memorable one!
*****THE FIRST PICTURE BELOW IS BY FAR AND AWAY THE NICEST ONE, YOU HAVE BEEN WARNED*****
Their sixth sense for a dressing change quickly becoming unparalleled, Granny and her husband, Eug, arrived just as the soaking was starting – as always bringing a confusing mix of chocolate and fruit juice – my body doesn’t know what to do 😦 The nurse advised it was entirely up to me whether or not they stayed and in turn I passed the buck on to them… So we had a very civilised chat, whilst the below swimming lesson was happening! It wasn’t so much sore at this point, as becoming sensitised all over the surface of my foot where the water was moving over it. Hardly any guck actually came off (or out of!) Death Toe in the water – which I took as quite promising – having previously seen proper DEFCON 4 level oozing when soaking previous toes…
The dweeby or medically inclined amongst you will note the rather textbook ischaemic mottling to the side of my foot… That honeycomb pattern is classic livedo reticularis rash and appears pretty much all over me at one point or another. My hands and feet are the worst affected, but I get some pretty cool patterns over most of the rest of me – it is made more apparent if I sit still for a few minutes, or if I get cold – anything that causes the blood flow to slow! It was this mottling appearing when I was about… 17 at least, that made my GP start to mutter about tests for lupus etc., although nothing ever ever came back postive – and still hasn’t to this day!
Two friends then arrived in time to swap with Granny and Eug – and given their somewhat more medical working environments, and/or lack of taste and decency, they were happy to stay for THE EVENT. This was very much welcomed by me, as it is a lot easier to be distracted from the pain of a dressing change when you actually have a distraction – and I had two of the finest 😀 They gifted me not only chocolate orange segments (a superior chocolate treat) but the featured framed photo. This ICONIC image is of more recent blog title page fame, but its spontaneous capture goes back a few months ago to when we had a private birthday shindig for several friends. I was exceedingly happy and loved up all weekend, surrounded by my fave persons, music and silliness, but also by that stage in the summer was very very lame and in a stupid amount of pain alllllll the time. To save future pain and trauma in an attempt to last the whole weekend, I was spending a lot of time splatted on a blanket on the floor, when every single muscle in my body wanted to dance and be a lunatic… Someone had the genius idea of telling Death Toe to fuck off to cheer me up and everyone joined in… and it was really very heartwarming, both then and now 😀
So for the old school dressing change, I plopped my leg up on a towel and was alternately nattering away and making ‘eeeeesssssshhhhhhhhhh…’ faces, whilst making demands for all of the news… Turns out that when you soak a foot that hasn’t seen water for a while, it needs quite a bit of… patting clean. The whole thing was a bit painful, but I had had worse – when the little brat was first infected when I came in – and when the hydrocolloid dressing skinned it that super awful day… I think the problem this time was that I had become complacent, following a few weeks of a stable, necrotic Death Toe remaining dry and content in his sticky honey dressing.
When I saw the above face to face after some ‘delicate wiping’ (gritting my teeth over 48 hous later typing that!) I really should have thought that it was possibly going to be more exciting in the aftermath than normal, but I just didn’t 😦 My friends being of medical persuasion were loving it – for one of them, dressing changes on necrotic digits are actually quite a common happening… The nurse stuck to the old school theme of the afternoon and went for a big fluffy football type padded foot wrap. Everyone who has dressed it has now tried different things and I think I have very much arrived on my preference now [EDIT: happens to be the one that was put on Monday!], but I was happy to take suggestions as it isn’t exactly my profession!!
Below is the new dressing…. It lasted about four seconds before it had been doodled on and we TRIED to glitter it up – I have that kind of friend who carries around a purse of small face glitter pots 😀 How fabulous is that????? BUT it was quickly going to get very messy and I don’t want all the staff to hate me
Usually the pain from a dressing change kicks off fairly smoothly afterwards and I have a little weep and then it settles again once the dressing has… Bonded with my foot? I don’t know how to explain it. You basically don’t want any movement or fricton at all between dressing and toe/foot. The difference to normal from either the fact it had been soaked and was stripped pretty raw again or the fact that the dressing was more fluffy and loose – or both!! – was pretty bloody apparent. It took much longer to kick off properly and at first I was typing away to try and distract myself late into Saturday night/early hours Sunday morning, but it got a bit out of hand 😦
I was obviously thinking I was quite funny, but one of the repeated lines of the below is …”did you forget to take your meds?” – I was absolutely cracking up, because no, I had not forgotten to take my meds and actually had remembered to take ALL OF THE MEDS >.<
Friends were having a bit of a shindig Saturday night, with DJ buddies playing my fave kind of Saturday night happenings – normally that would have been making me sad, but I hadn’t even really remembered until the next morning, as I was sore as fook. Messages on facebook from around the very early hours of Sunday morning involve a lot of swearing and very bad typing I vaguely remember that one of the nurses called to discuss the matter with the on call doc… The upshot of that conversation basically being ‘let the child have more morphine – and Kath did, and it eventually worked and Kath eventually slept’.
I reckon I probably slept/blanked a lot of Sunday morning – I know I started gathering my thoughts for some writing and then made a clear decision to give up at some stage. My foot remained an absolute pain in the arse – the particularly unpleasant bit about this dressing was how it made the nerves across the top of my foot hyper hyper sensitive again, which I hadn’t had to deal with for a few weeks.
I was feeling like I had just started to ‘life’ by having a shower and making my hair smell fabulous etc. – and then Sunday roast of course came with cabbage. It was a proper kick in the balls moment… I spent large amounts of the weekend doing xmas shopping type online activities – this can be translated largely as building up ridiculous online shopping baskets, sighing and clicking ‘save for later’…
The highlight of Sunday was Mum and one of my Aunties coming to see me, on their way back up from the girls weekend away in Cheshire, eating crisps and plotting Christmas presents. I got a sneak look and snuggle of the most amazing quilt – made by a DIFFERENT Auntie – I have a few 😀 – and can confirm that it does at first meeting appear to have ‘magical toe healing properties’ as promised… See below! It is MASSIVE! Show and Tell came with real pringles and my Auntie respected the serenity of the Ward by NOT throwing sweetie wrappers around. The visit was quite an emotional one, as my Mum got very upset, obviously feeling the brunt of the frustration and anger I am experiencing with an added bonus of parental helplessness. My Aunt also then got upset and I had to focus on telling HER not to be dramatic so my morphine soaked brain could process how to deal with the confusion of wanting to be comforting my Mum, when she was so clearly wanting to comfort me 😦 This is what took me so long to settle my mind on before I could post and I can happily confirm I am still absolutely livid… Along the lines of ‘nobody messes with my mama…’ – but I have not physically kicked off and instead have tried to productively think of active things to get me the hell out of this situation.
I didn’t sleep very well again Sunday night due to being upset and still in quite a lot of pain from the different dressing type. I had a shower when I woke up Monday to try and sort my act out, but this ended up meaning I missed my Dr, right when I REALLY needed a chat about referrals and cryo tests… I would have struggled a bit I think, but inside friend came to whisk me away to the cafe and I ate a huge amount, spent the afternoon looking for unicorn onsies and generally spent a bit more money on myself!
The highlight of Monday was a much needed dressing change – Granny proved her sixth sense by appearing bang on time again 😀 Once the dressing had been sorted, I was much more comfy almost instantly!! I am remembering this one for future and will quite firmly be saying no to any future swimming lessons… See below – I am guessing it was so so sore as Death Toe basically had to get his necrotic shell formed up again. I cannot imagine how the skinned raw Death Toe for that 48 hours was anything other than a massive infection risk either… Excuse his fibrous disguise – he was still sore enough that we just didn’t even bother getting those bits off! Dressing was redone very simply with the honey cream and basic padding and it was honestly so much better within moments, it actually made the whole experience relatively enjoyable and Granny and Eug got to witness a very undramatic ‘no-tears’ version of affairs 😀
Monday evening I spent a bit of time tidying myself into a newly discovered giant locker next to my bed – and we also got some new people in the room. The elderly lady with alzhiemers opposite me was discharged home… I was delighted for her but also, very selfishly, delighted for myself. She had a horrendous cold and was responsible for a lot of difficult to deal with sniffing noises, of the type that quite seriously tested my faith in myself as the kind of person who DOESN’T suddenly and calmly snap in the middle of the night and smother her delightful, polite, adorable roommate with a pillow 😦 If it helps, I didn’t… I have continued since the weekend to get majorly distracted with online shopping baskets, the key being not to check out… and failing to stick to that crucial rule 😀 I think I have basically excused it along the lines of ‘I had a very bad few days’ hehe…
I also managed a more relaxed chat with Mum AND!!! I had a phone call from Dad in Oz, both of which calmed me down hugely. It is horrid knowing we are all upset and powerless to do anything about the same thing, but then exacerbating it for each other, when what we need is some good ole fashioned family team work! I have been digging away behind the scenes plotting the next step in escalating from ‘a bit miffed’ to ‘seriously rather pissed off’ – the main advice seems to be forget absolutely everything now, including all of these stupid unhelpful negative test and biopsy results and just focus on confirming that referral and getting down to Addenbrookes!
As of still writing Tuesday night, still dangling off the cliff!!! No doc contact, as I was ‘in the shower’ on Monday and this morning, was advised that the BIOPSY is now also negative by one of the Musketeers = and still haven’t seen my Dr since Thursday’s big long chat. Basically, after the emotional onslaught of this weekend, I have hit the wall and am lining up my rubber ducks around the edge of the bath of war -.- Tuesday afternoon has overall given me nothing dramatic at all to deal with except organising and judging myself for all my amazing and exciting online shopping… I had a few rather handy phone calls to sort my head out and am pleased to end this sordid tale on a beautiful note…
A passel of my favourite womenfolk came to see me this evening and I talked their faces off for nearly an hour and half over the visiting hour, as we were hiding in the day room 😀 It was very much perfect timing, as not only did I have lots of chance to vent and get hugged and told I am fabulous (one of my favourite pastimes…), but it has given me a chance to sort out my mind on a few points – in that way that only saying something aloud to people you love and trust can do 😀 Awwww all of the feels 😀 They did also get me a ridiculously floofy pink pompom thing that I have christened Flaps AND the below. To summarise the last few days, lets leave it to Rastamouse to end on a high note 😉