Ok, so as you may be able to tell from my title, I don’t really know what to call the new void in my life 😀
******Personally, I don’t find this as difficult to look at as the infected and necrotic Death Toe we have all come to hate and loathe, but fair warning, I have wanged in a picture of the fairly fresh amputation wound a bit further down! It is all clean and tidy, but may make some of you feel a bit icked!!******
I would firstly like to tip my hat to the surgeons at Cumberland Infirmary, who stepped up and lopped off the toe that quite a few Docs had previously shied away from amputating… That being due to the seriously poor circulation in said toe and the rather frequent infections I end up with It basically got to the point where it was looking pretty likely I had osteomyelitis and when the amount of pain I had been in for a YEAR was factored in, everyone agreed to just get rid of the little git!
I had literally JUST had five days of plasma exchange followed by the first dose of cyclophosphamide and was then advised it was chop day… Which meant no painkillers It was a mixed blessing that Mum managed to see me before the operation – obviously lovely to see her! – but I had not had any painkillers that morning and was NOT a happy bunny. Death Toe was being a proper little git and I was curled up in a ball whimpering when she came in and had to sort my self out to have a chat with her! She did get to see the fab arrow moment below though 😀
I was feeling pretty grim that morning anyway, so the actual pre-surgery prep/chat is a bit of a blur. I do remember getting the hideous – I mean FETCHING – hospital gown on, being wheeled down on my bed and being in a sort of pre-surgery waiting area… I mentioned how bad my circulation got when I was cold (getting a bit jittery about turning blue on the table!!) and was given a fabulous heated blanket which felt divine! Then I was wheeled in, and had an mask over my nose and mouth and was breathing in slowly whilst something was injected into the cannula already in my wrist… and then next moment I was waking up rather slowly and fuzzily in the recovery room! I had some totally crazy dreams that I cannot sort out if they came before, during or after… Very vivid and lucid, with incredibly detailed plots that felt like they went on for days!! General anaesthetic from that point is pretty flippin neat!! But I really felt pretty shocking for at least 48 hours afterwards…
By that I mean when I came round, I remember seeing one of the ward nurses I knew and trying to smile at her, hearing something about my temp being 35 degrees again and realising I was absolutely frozen!! Then someone said something about heated blankets, one got laid over me and I must have grinned through the O2 mask, as she (the nurse) said “That’s cheered you up, hasn’t it!” and I dozed back off! Then I was zoning back in to being up on the ward again and realised quite how shocking my breathing was and feeling horribly feverish for what felt like a long time. I was very, very breathless, it was horrible. Reminded me of when I had pneumonia many years ago and I was getting tired just sitting up. I thankfully didn’t feel massively sick at all, but was asleep the vast majority of 48 hours, had no appetite at all and was utterly exhausted talking for more than a few seconds. Getting the five metres to the toilet (I was DETERMINED not to use a commode!!) was enough to absolutely wipe me out and someone was walking with me – NOT because of the amputation!! – but because I was so tired and dizzy I felt like I was going to fall over!
My first look at the toe was to take a bandaged pic and text parents to say all was ok before I zonked out again. I wasn’t sure how much of it was whatever local painkiller they popped in me before I came round at first, but was walking on it (with stick) pretty much straight away to the toilet and INSTANTLY was telling everyone it was less painful than before!
Brace yourselves, next pic is a space where there was once a Death Toe…
Now obviously at first, everyone was probably assuming I was just quite doped up and I was offered oramorph if I wanted it, which before chop I had been using a fair wee bit as a regular top-up to be able to handle Death Toe. I quite quickly convinced everyone – including the surgical team! – that I wasn’t being a tough cookie however and it was actually massively less painful 😀 I will say with absolute sincerity that getting that sodding toe amputated is one of the best things that has happened to me in the last two years. For a year at least, Death Toe was ulcered, infected almost continually, then turned necrotic and was the acute cause of three hospitalisations totalling at least eleven weeks to date in the last six months! This may seem a bit weird, but I was actually laughing with the surgeons when they first unwrapped it and I had a look, as the gap was a lot bigger than I expected – and the lead surgeon said I had a fat toe 😀 I assume they don’t normally get thanked quite so sincerely for having chopped off someones toe 😀
My first impression was how huge the space was for one toe… Second was that it is going to permanently look like my foot is telling the world to rock on haha 😀 Other wonderful comments have included the following: “It is a serious bit of space you’ve got – make a tiny model of a guy tightrope walking across it!” (hehe) Little Broo’s tattoo suggestion for my foot: “mind the gap” (probably too serious an infection risk haha!) Other tattoo suggestions included “It was not meant toe be” and “Digitally Remastered” 😀 I think absolute fave reaction has been Em, when I sent her the above pic on whatsapp and she eloquently replied with “Fucking hell! It’s like a scene off the walking dead…..RIP death toe” 😀 I love that lass!!
A huge amount of love and support as always from the Vasculitis UK facebook group… A lot of them have been following this blog, which was started AFTER Death Toe became a git (hence the name… Obviously…), but actually before it went necrotic. They were all being fabulously happy for me, which in itself is a massive boost when you are feeling naff. I also got to meet one of the gentlemen I have talked to for a long time in person, just before surgery and then afterwards for a groggy hello again! One of the loveliest things was the below pic being sent to me! One of the ladies and her students had a fabulous toemorial supper for “Nekro dakteelo” (Greek for Death Toe) as, as she explained, in Greece both life and death are celebrated with food 😀 Fabulous idea!! She had been reading this blog with them in their breaks, so from me to them, a massive hello and lots of love and thanks for the support xxx
Anyway! I got a new neighbour on the ward yesterday… Annoying on many levels. The following is a bit personal and obviously, this lady is VERY unwell and the fact it irritated me so much is probably due to me feeling a bit sensitive about the topic rather than her being deserving of it. Also quite likely a level of me being sensitive to both her accent and lack of enunciation (eeesssshhh) and what I cannot help but assume is a consistently present level of stupidity. Haha ok, I am totally failing to be nice about her >.< Please please believe I am very sympathetic to be being unwell and have not been mean to her, but yes. She has been driving me insane since the second she was wheeled in! Firstly, I couldn’t help overhearing that she is a diabetic, who hasn’t checked her blood sugar levels or taken insulin for WEEKS/doesn’t eat anything sensible (the list of things she doesn’t like was insane and the only thing she could offer that she DID like was chicken…) because… She didn’t feel unwell. Until she collapsed and surprise, surprise her kidneys have failed. Her doctors are a thinly veiled appalled and I would go so far as to suggest angry; apparently she is consistently shit at monitoring and been warned many, many times. For someone who is personally desperate to avoid kidney damage, given that my disease seems to be going for my smallest blood vessels, I couldn’t help but find that kinda upsetting, seeing just how upset and frustrated her husband and doctors were. Each to their own?! Can I be angry at this justifiably, or is that a bit ethically dodgy?? On a more immediately understandable level, her space is also making two types of beeping… Fair enough this was initially first being noticed seriously at 11pm but last night it went on for over three hours (I finally managed to sleep) and appeared to be necessary as no one did anything to make it shut up!! We had high pitched and constant: bip bip bip bip bip… and then the more musical, annoyingly spaced every seven seconds: bi-di-bip!! – and tv on (quietly but… cammaaaan lass!) – and light on, curtain wouldn’t fully close between us!!! Tonight – correction ALL DAY – we have had the tv on as well… I don’t watch it ever myself (unless on the sofa with Fave and Giant Beast) and I have decided to now hate her with all my tiny rage 😑 Been a while since I had an in-patient nemesis 😄 It feels good, gives me reason to keep fighting hahaha – I’M JOKING CALM DOWN – but seriously, if she falls asleep with that tv on again tonight I will smother her. It isn’t all grim. The 90 year old lady next to me is absolutely wonderful and spent the morning bantering again with the student nurses, making me laugh a huge amount and generally being fabulous all the time 🙂 Ooo the below were a little pressie I was sent from one of the support group as well 😀 Perfect for slipping in my mittens and reuseable 😀 (Thanks again xxxx)
Today was a good day all round… I had a good chat with a few docs and my consultant and have been given the go ahead to drop to 10mg pred daily, start lowering the slow release morphine I have been on for at least five months and managed a good few short walks to the nurse desk and back 😀 With my stick still, but was aiming to get my foot flat on the floor through all the padded bandaging… First time in about a year, as I have been walking with my toes up to avoid the pain of contact, as the initial ulcer was on the bottom of the toe. I did manage, but had serious muscle twinges all the way up my leg, hip and back after a very short distance, so defo need to get some physio involvement and build it up slowly The actual foot itself was way less sore than the resultant twangs!! ANYWAY. Also started warfarin again FINALLY and based on me being steady for the next few days on it (ie no unplanned incidents hehe) Docs are happy enough for me to maybe go home for few days to parents’ house 😀 Would then be back here for dose two of cyclophosphamide and a review with vascular, surgical and renal staff again… But I might get to see the sky :O
Finally!! My fabulous Little Broo and his equally fabulous friends are being very good eggs and doing some fundraising for Vasculitis UK. I have been doing the happy cry thing all day and getting some beautiful messages as a result of him sharing his justgiving page and cannot thank him and the team enough 🙂 Please have a click, a read and a share and go and visit the homepage for the charity. Any pennies you can spare would be appreciated and I cannot stress enough how much myself and the other members in the support group love and value the help and support we receive, on a daily basis in many cases!