Kath is confused about her mental state, has just had a whole load more drugs, and is trying hard to deal with using the Oxford comma :/

Having an unusually chipper few days – first time in a long while I have both thought about updating blog and then followed it up with settling down with laptop. A little bit of this I am attributing to the cheesiest radio station ever – Tom found it whilst doing the first layer of painting at my new house!! Mega 90’s/early 00’s tunes!! Smidge cheesetastic… It is the kind of stuff I was dancing my arse off to when at Uni/writing essays/would lose my mind if someone snuck into a dj set 😀 I should probably be ashamed, but I’m not.

A few weeks ago, I was prepping (as much as one can!) for the formal meeting decision; the outcome was a warning on my file and five days to appeal it. I was imminently due to go back up home for Mum’s birthday… I got the train home for her birthday, which was technically successful, but only really with Fave giving me a lift to the station and a very nice gap between trains at Lancaster, enabling a few metre stagger into waiting room and the next train arriving in the same place over 45 mins later. The looming appeal overshadowed it a lot and made me have weird anxiety dreams. My current repeating one has been creepy old men with long white beards looming at the bottom of my bed and making me wake up screaming (at least in my head :/ Not sure if I am actually screaming out loud…) and with my heart going like the clappers. This means I then stay awake for ages wondering if my body is waking me up through the medium of dreams because I am a) having a heart attack b) have a clot flying around somewhere c) kicked an ischaemic digit off the wall (THIS one has happened before!). Anyhoo, last time I was at home, I was putting together points for an appeal and fretting about it a lot whilst procrastinating massively and stewing about the deadline for handing it back in… Mum ended up making me stash my laptop away and CHILL OUT, as I was probably doing her nut in 😉

I have now come full cycle and am BACK in Scotland for a few days post-hospital (standard craic). Both times the cat was obviously delighted to see me. That should go without saying… First time first though. I had a few days of just myself and parents, then picked up Little Broo and his lady. It is those two who are running soon in the Edinburgh Marathon for Vasculitis UK. DRESSED AS UNICORNS!!! DONATE FOR KATH POINTS! Seeing them was awesome, even if they did have a little bit too much joy in their faces at the thought of a ten mile run in the rain, up a hill.

JustGiving link for Toetally Awesome!

Fester was being a bit of a git, so the day after getting home I ended up getting some email advice from my consultant and GP, and getting a course of antibiotics from local Scotland GP.

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Local GP has an AWESOME sunny waiting room!!

This ended up being x3/day for 13 days, because typically it didn’t clear up within a reasonable period. That would have been so surprising and unusual that I wouldn’t have believed it anyway, so 13 days was always going to be the case! The nice news is Fester is currently not oozing and I have so far got away with having an active local infection WITHOUT BEING HOSPITALISED!!! *high five, high five, high five* – I have had nervous moments galore since then and have now got a ten day stash of co-amoxiclav (same one) to start if he kicks off again. Voldetoe also being a dweeb. Constantly sore and ischaemic now for over 15 months but never really yet gone properly mental. Freaked out the other morning as he was being rather sore and noticed large black spot on the end in the shower. Black on my toes means necrosis, which means heart sinking and life flashing before my eyes and assuming the rest of my life in hospital;8 I essentially managed to talk myself into a complete state within the duration of one shower… My will was getting amendments made, I was working out how to self-amputate if my Doctors refused… Get out of the shower and line up all of the antiseptic wash, gauze for cleaning, medi-grade manuka honey… Turns out it was some black fluff that had resisted the shower 😀 It was both funny and a bit alarming to see how quickly I lost the plot over a bit of fluff :/ My toes are getting a ridiculous level of attention anyway. Checked at least once a week by practice nurse at local GP and twice a day I am checking them, cleaning and smothering in manuka. It is quite weird putting honey on your own toes all the time. It smells bloody good, but by the time I manage to get downstairs, I keep forgetting to have honey for breakfast. Ooo and Kevin remains fine and dandy – a lot of sensation in the end of the stumpy bit, actually more than the ends of my other toes given how much damage they have accumulated!! Maybe all round amputations is the way to go and just have ten stumpy bits!!

This radio station is awesome… Its the kind of music that I get excited at every single song and everyone else winces at and makes cut-throat gestures to whoever is in charge of the tunes. I miss music so much!! Its like that weird feeling where you feel alone even when you are with other people; I feel like I don’t have music in my life at the moment, even though it has always remained to hand. I think a massive part of that is not being able to dance, even just that casual dancing round the kitchen that was always a standard part of my day! I got out of the habit of having radio etc. on when in hospital for so long and when my old laptop died I lost a LOT of music that I had accumulated over many years. Only just now rebuilding my youtube faves lists and being awake long enough to bother turning anything on. Also finding I am ever so slowly getting over the sulking from missing SO MANY parties and events over the last seven or so months. Even just going out and getting some live music used to be a very regular thing for me and got steadily more and more impossible as the literally five minute walk to my fave pubs became an insurmountable obstacle!

Anyway… For Momma’s birthday, some Aunts/Uncles/baby cousin etc. all gathered for extended partying and food – and! Exceedingly Tall Broo came home 😀 😀 Little Broo went for some carrots or something and came back in with a really tall, really smelly and very tanned older younger brother! The little gits had been planning it for MONTHS to coordinate him coming back from the US as a surprise. He had even gone to the extent of ‘going off grid’ in case Mum used the whatsapp locator function to make sure we didn’t realise he wasn’t in Washington State but actually nearing New York for a plane home! He had a helluva faff sorting planes and trains back but arrived eventually and some of us maybe cried a teensy weensy bit… He has since come down to my house with Dad and spent a few days painting my NEW house – freshly plastered almost everywhere, so needs a LOT of layers of boring white base coat. He is doing well so far, earning his packed lunch each day but wanted talking to… :/

Mum’s actual birthday was pretty awesome! She had a pretty good idea she was getting a party by that point, as Dad had wanted to do it as a surprise, but I made him confess as anything else would have resulted in a divorce due to the unready state of the house for many houseguests and many many visitors on the Saturday night. A huge amount of food was made and brought and it was all AMAZING – I did that thing where you eat so much you go into a coma, which tied in nicely with the energy floop. I had to fall asleep flat on my face a few times over the few days; talking to people and being constantly excited and enthusiastic is draining! It was also quite emotional as well, with Big Little Broo being home, baby cousin being utterly edible and some very thoughtful and lovely words from my parents’ friends regarding how ill I have been. It was something I had been dreading a little, knowing everyone would know to a certain extent and that they would be happy and curious to see me semi-recovered and have questions… and knowing how knackering I find talking and sustained ‘human-ing’ right now. But it was actually just very nice – no one said anything that made me think they were being ignorant or thoughtless, several of them were talking about having read this blog and had lovely supportive things to say about particular things I had experienced, or shared stories of them being in hospital or having chemo etc. It made me very proud of my parents in a roundabout way for being the kind of people who attract such lovely friends 😛  🙂  SMUG KATH!!! Also went to see Beauty and the Beast whilst up in Scotland – didn’t fall asleep, cried a lot and got all dreamy at the size of his bookcase!

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Once on the floor, easier to stay on floor. Knees NOT happy right now!!

One of the nice things about being back out of hospital and on slightly fewer drugs is being able to read again without the words going all swimmy in front of me. Being awake for longer than half an hour helps, as I can get a good uninterrupted stretch to get properly sucked into a story. I missed it so much – it has always been a huge part of my life, being so deep in a book that I don’t hear people talking to me and getting violently angry if someone (usually a brother) even thinks about touching my book… Probably because they used to chew them, or deliberately lose my place to enrage me. Gits. My newest fave author (also Fave’s!) is Laini Taylor, creator of the magnificent Daughter of Smoke & Bone Trilogy. Reading Dreamdark at present and it is absolutely beautiful. Teeming with sentences with real depth and a … I don’t know how to describe other than a tasty texture… When I am reading, the way the words sound in my mind has a flavour and tangible quality to them that books of a less fantastic quality just don’t manage! I knew it was amazing from the very first page; I like to think I can tell from one page whether or not someone has that particular trick I love. E.g. First line on a random page – “Daylight twinkled into twilight as the last slanting rays of sunset withdrew from the treetops.” MMMMMFFF! The downside to reading again is that for some reason it tends to give my depressive side a nudge. Or maybe I read more because I feel a bit more gloomy? Maybe introspective is a better word; I don’t know. I had a bit of a spell of worrying about all the work meetings and getting pissed off that even though I am out of hospital, I still can’t do anything like as much as I want to physically – even when I would have thought I have already massively lowered my expectations 😦 Some days I am shattered by the time I have had breakfast, which is a bit ridiculous… I keep getting cheesed off as well at still feeling stiff and achy all the time. I think I am focusing on that more without dying toes being the dominating pain, but less morphine maybe also not helpful 😀 Sadly staying on stupid levels of morphine not an option, as not only does it make my brain mushy and isn’t safe to be on longer term, but it also will be masking all sorts at that level, and I need to know when things are kicking off to identify what this stupid twatty disease is up to.

I got a lift back down after the birthday weekend and got my appeal letter submitted, then got an invite for a meeting to discuss/present my case. Thankfully my brill Union rep was free to come with me to this one, as it is horribly stressy anyway, but knowing my tendency to run out of brain mid-sentence, the thought of a formal meeting solo has become pretty nasty. Meeting is over anyway and now just waiting for a result of some sort, once it has all been looked over. The weather has turned much more spring-like – and I have now had actual proper sunshine AND ice cream!! I had a crazy good day one day (maybe took too much pred or morphine??) and went for a wander at two and a half year old/very pregnant Aunt pace through the Priory woods. Was very very bad the next few days, but it was kinda worth it to get some fresh air, and to see genuine flowers and all the wild garlic down there. I have been a bit grumpy about the boom/bust cycle – with all the treatment and new things happening drug/pain wise, I have no idea how something will impact me at the moment a few days ahead. I am trying to be careful but also wanting to take advantage of the good days.

I did this one day and went to the big Tesco for the first time since September, but it was a bad idea. I took my disabled parking badge and used it, anticipating that even having a good day, I would be knackered after a shop. Not something I have done very often at all, for the simple reason that it arrived once I was already in hospital and since then I have barely ventured outside/been able to drive. Driving is a pretty new thing for me again! I parked just round the corner from the door, got out and was making my way in and a old man sitting in the passenger seat of a car in a different disabled space started shaking his head at me, glaring and waving his finger and pointing at my car and then me. My first reaction on catching sight of him had been to smile at making random eye contact, because I am that rather creepy person 😉 Then when I realised what he was on about, I firstly decided I was imagining it, then thought I would shrug it off and pantomime asked him “CAN I HELP YOU WITH SOMETHING?” He glared away and down when he realised I was staring back at him and had stopped… Not sure if I really looked threatening, but that was essentially how he reacted 😀 Anyway. I got into Tesco aaaaaand promptly burst into tears. Howled my way around the entire upstairs level. Whole point had been to get a printer to finally sort out all of my doc notes and emails, but ended up taking a lot longer… I called Fave and was crying so hard she couldn’t really work out what the problem was, but I was also kinda laughing at myself at the same time, as I knew I was being a little bit dramatic. It reminded me of the scene in Anchorman when Baxter has been punted off the bridge, and Ron is on the phone… In his “glass case of emotion” 😀

Classic scene! I was basically saying the words “mean man” and snotting a lot. This obviously made for a massive emotional wallop and by the time I got out of Tesco (lovely lady helped get the stupid printer to the car), I was a complete mess. I then cleverly didn’t go home and rest straight away, OH NO. I went and stress-bought (as opposed to stress-eating) more fish :/ I have very weird stress reactions. This is maybe the third time I have reacted to stress by buying fish or plants for my aquarium. Yes, I am a bit unhinged. But aye. It was horrible knowing that I was letting someone get to me so much about it; I think I have a level of underlying ‘guilt’ or a fear of being a fraud still. That is despite many many people reassuring me about this many times. The most hateful thing about it was the fact that I hardly ever use the bloody thing, even when other people are driving and before I dared drive myself again, particularly because I am always worried about whether or not I am in some way ‘taking the piss’ or ‘faking it’!!! The last thing I needed was some mouldy old bastard making me feel shit about it. It is hard enough as it is feeling crappy all the time, constantly trying to walk as normally as possible so you a) don’t look weird and b) don’t do even more damage to your joints/muscles. Oh yes, was not using a stick as PHYSIO HAD TOLD ME NOT TO IF I COULD AVOID IT. No stick, under the age of 80 and not in a wheelchair… So clearly not disabled yep? Crusty git. I have since had to deliberately make myself suck it up and do a cost-risk analysis based SOLELY on how I am feeling/distance involved etc. each time I have left the house/needed to park.

Other fun moments of anxiety/depression surfacing lately have included isolating myself in the house for a few days, as I was too scared to take the first one of my new daily MMF aka mycophenolate pills (I think of them as ‘chemo-lite’ when compared to the cyclophosphamide…). Reasoning for that being I didn’t know what the side-effects would be :/ Even though the most likely one was puking or stomach cramps, I essentially convinced myself that the world was going to end and stayed in sulking and avoiding making eye contact with the box. Ahhh the joys.

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Evil box…

I am a few weeks down now and nothing particularly exciting has happened. The only stomach cramping was nature being a git. Oh yes. TWICE IN ONE FRIGGIN MONTH. Nearly. I ate an entire bag of mini eggs for breakfast one day. That was a significant clue. Recently had my first physio app and the woman was really lovely; really good grasp on what it has all meant for me, regardless of the unknowns for me re specific diagnosis. I did a little walk up and down for her and she agreed that my foot muscles have gone a bit strange from trying to keep my toes up (sub-conciously) so I don’t touch them off the floor… Also that yes, using a stick is helpful when I am very bad on one side or having an unpredictable shhhlumpy day or super tired… But longer term, thinking about muscle wastage and damage from being lopsided etc., handier to not use it where possible, even if that means I am a bit slower. More important to try and walk ‘normally’ again, although she did confirm that most of what I was instinctively doing when I was learning to walk again post-amputation was exactly what she would have been advising. I already do a lot of foot flexing etc., but the thing I hadn’t appreciated was that when my knees are being horrific, you can’t strengthen a joint… You need to basically make the muscles in upper leg stronger to support the movement of the knee. That is maybe not technical jargon, but yep, even if I am having a naff day, I need to try and do even very basic movements each day, preferably several times a day. They aren’t exercises as such, more like making specific muscles work, which thankfully I have found I can do without putting much strain at all on my back or knees. The worst bit is actually getting up again when I have been lying down haha 😀 It is seriously hard; involves a kind of three point, three directional manoeuvre with swearing and hauling on end of the bed/sofa/chair etc. Really not my most elegant moments!!

Still got many, many doc appointments each week. Earlier this week I had some nice news re blood results (bone chem profile, full blood count, LFT’s, long term sugar check, cholesterol etc. – everything!!!); nothing new to be alarmed about and my LFTs are currently only approx. 1.5 – 2x normal adult range ‘max value’ instead of the 3 – 4x that they were in Dec when they peaked! As a comparison, since early last year when I started to get worse, those results started to climb from usually being at the low end of the normal range to the December high when I was exceedingly not well 😏 They have fallen very slowly but consistently downwards since then, getting checked every couple of weeks. As a reminder for those who maybe doesn’t already know, blood tests are definitely not a reliable marker for everyone – and I personally don’t tend to have very reliable results in terms of reacting when I am very flared or infected – or showing ANCA or raised CRP or any of the other NORMAL bloody indicators of the disease I have!!! – but I spent a long time being told that my blood tests showed NO signs of me being ill, only to find that that was absolute garbage. To have a visual marker of something improving month by month is so nice amidst all the crap. For this to be happening despite dropping pred slowly since I left hospital is very nice as shows that it is genuine improvement; maybe a tentative sign that the rituximab and the cyclophosphamide are doing something??

The other nice medically type news is that my hip biopsy site is now healing slowly (month and a half on!) with no sign of infection at present!! This is likely to be vastly sped up by the recent removal of four so-called DISSOLVABLE STITCHES… For whatever reason, my body just does NOT dissolve them. Doc thinks it is one of those interesting quirks that make me a medical weirdo/maybe something to do with my immune cell reactions to foreign objects being compromised… Same thing happened with the Hickman’s Line stitches – I ended up pulling them out myself, when the wound had basically healed around them. Left with a flippin HUGE scar 😦 The problem with biopsy site was neither myself nor practice nurse (until the other day at least) had realised there WERE any dissolvable stitches involved!! Given the 10m (approx.) of normal stitching removed over a month ago, having anything else involved smacks of overkill. So yep. Drugs slowly reducing a little/balanced by the new MMF… Doing the upcoming fortnight looks like this + paracetamol + warfarin 😛 Still takes over an hour, but economies of scale in having purchased second weeks worth of boxes!

Have just come full circle; back in Scotland having just had my third ritux infusion – featuring overnight stay – in Carlisle hospital, and heading back down tomorrow. It was very nice to see staff I know and like again, and I didn’t have any interesting allergic reactions. Yet. I have at least a month’s worth chlorophenamine on standby in case I get that fecking itchy rash all over my arms/face/back/chest again. Watch this space… 😛

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Kath gets up close and personal with the sofa; being home is exhausting and being ill is both very frustrating and incredibly complicated to organise. ***Lots of sweary ranting… and a beautiful pic of Death Toe remnants***

I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀

I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.

The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.

This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]

Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.

Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!

I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉

*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****

As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.

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Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.

Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!

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I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.

Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

#rarediseaseday challenge – Day 28: RARE DISEASE DAY!

So everyone will have seen me posting about hospital this, infection that… Toe dying this, massive amount of drugs, something medical blah… And yep, it can get easy to skim past or ignore it all and think “nothing new, moving on, memes to read…”

Personally, I don’t know yet if I have a rare disease. Which may confuse you, but what is happening to me isn’t proving easy to diagnose. And believe me, my Doctors have taken many many many vials of blood and mri scans and xrays and chunks of flesh… My toes and fingers are essentially trying to die because my blood is too thick and my body has decided it doesn’t like my small blood vessels… or my blood. They don’t know yet. I am bloody lucky it hasn’t yet progressed to my other organs – kidneys being the likely next step.

What they can say is that it at least very closely mimics symptoms of small vessel vasculitis (they are now currently calling it ‘livedoid vasculitis’!). I had never heard of this condition before being advised that it looked like I had a really rare variant in approx. March 2016. By this point I had been really unwell for about 18 months already. So I got googling. Turns out its a group of super flippin’ rare auto-immune diseases where your body attacks your blood vessels. For funsies obv. I started learning about it as fast as possible, because knowledge felt like control and I really badly needed some illusion of that. My diagnosis has since become a little more vague due to my failure to abide by the rules regarding blood tests… But regardless of what variant or cross-over or mimic I actually have, Vasculitis UK have saved my mental and physical bacon.

To learn more about the volunteer run charity and the disease itself, please go to http://www.vasculitis.org.uk

Vasculitis UK have been a wonderful, crazy and understanding family from day one. Someone is online at any hour of the day or night due to all of our inability to sleep (pain or meds) and they have all been so incredibly tolerant of my rather madcap approach to life and chronic illness. They gave me a hefty kick to seek proper consultant advice – as regardless of best intentions, unless you are a specialist, vasculitis is simply too rare to be able to diagnose, make judgement calls safely or even get funding approved for the more exciting drugs.

I’ve now had quite a few exciting drugs. The most recent being cyclophosphamide, a chemotherapy drug that I spent many many months fighting to avoid having to take. I was too ill and medically weird though, so whilst having my second batch of five days of plasma exchange in three months, I was told it was chemo crunch time. Toes and fingers and kidneys vs. future babies and hair falling out and feeling pukey and crap… Since the start of October 2016 I have spent maybe four months in three different hospitals. The vast majority of people I have met through Vasculitis UK have had more than one round of chemo. Some are frequent flyers! It upsets and frustrates me to the point of tears that the general public and media perception of chemo is as a cancer treament: it is used SO much more widely than that.

So that is my message for this #rarediseaseday – CHEMO IS NOT JUST FOR CANCER.

If you are ridiculous enough to be offended by that, firstly please go google it and then either apologise to my hair that is falling out and make a donation to Vasculitis UK or unfriend me and walk away. I don’t need ignorant judgemental people in my life 😉 Donations can be made to the below page, where my awesome little brother and his buddies are running for Vasculitis UK and all of the amazing work they do and research they support. ‘K bye xx

justgiving – Connor & Co. running for Vasculitis UK

Snow-way!! O yeah, it snows properly in Scotland ;) In which Kath hits up the hospital for some more toxic sludge, builds a snowman and has managed – da da daaa!! – to get TWO SHOES ON!! – for the first time in at least five months :D

…although to be fair they were Dad’s shoes 😉 😄

So as per the plan, last Monday I was scheduled in for a full day back at the hospital for dressing checks and dose two of cyclophosphamide – along with the various other bags of stuff you need at the same time to stop you projectile vomiting and protect your bladder from the chemo.  I woke up horribly early (5.30am… So genuinely, horribly early!) and then as NOT PER THE PLAN, the car windscreen wipers were not working, despite two return visits from autoglass to fix them previously, after an accidental breakage during a routine windscreen replacement… So given I was still not feeling mega swish post-hospital anyway, Mum’s stress levels went through the roof as she was faced with a two hour journey on the motorway, in the rain, without a properly working car and a whiny delicate passenger, with a lot of people waiting to put drugs into the passenger… After a very nice polite conversation with customer services (using the calm voice that probably came across as very reasonable, but would have had myself and my two brothers peeing ourselves) we hopped (literally haha) into the rather erm… interesting… Landrover and went and got a hire car for the motorway bit and got down only a few hours late! I say interesting; now Dad is very fond of the Landrover, but it has a roll of duct tape in the front for a reason and it rains inside when you go round corners 😀 It also isn’t very easy to get into, but with making some epic huffing noises I have been managing to do some sort of scrambly “HUP!!!” type thing that a week or two previously would have been completely impossible. Autoglass are in trouble 😉

All the drug stuff went very well, although I am fed up of having knackered veins 😦 The inside of ones wrist is NOT a nice place to have a cannula in for hours. Bruising up like a peach still, several days later! Got a whole load of bloods taken and they were all spot on target, so I was allowed to proceed with all of the litres and litres of drugs – saline, something called mensa to protect my bladder and kidneys… Some anti-sickness thingy (ondansetron in liquidy form maybe?) and the cyclophosphamide itself. I was absolutely awash. Mum did little bits of nipping into the town centre, exploring hospital and nattering to keep me from dying of boredom. Dressing changes also went nicely – stitches out of both Toe Gap and The Wound – getting them out nipped like stink and The Wound is so epic it has needed steri-stripped and further dressing checks since and looks like it is probably going to leave a fairly fabulous crater type scar…

Hats off once again to the ward staff, they were very sympathetic and understanding about us being a teeny bit late – especially the wonderful lady who had already come in on what had been booked as a holiday to administer the drugs for me, as only a tiny handful of staff are allowed to handle the chemo until they have had a few supervised training sessions. The other car still isn’t fixed, but thankfully the only use the Landrover has been required for whilst Dad was away has been local trips to GP five minutes away to do my INR checks (every bloody two days) and dressing pokings. Warfarin is going well!! I am so far alllllmost managing to stabalise at about 5mg a day, so just tweaking a smidge to get me slightly higher into the 2-3 target range and then I might be able to get stabbed a little less often!!

Other than regular INR stabbings, I have managed to spend most of this week on the sofa getting rather worryingly addicted to Criminal Minds and NCIS – and have nearly finished the trilogy Fave lent me!! Also being at Scotland home, I have had a chance to eye up some books to take back down with me. Not that I am in any way short of books down at England home, but the heart wants what the heart wants 😉  Mog continues to thrive under the attentive love and care she receives when there are witnesses and other feeders…

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The precious angel is SO deprived; she was ecstatic with glee about being presented with a box of her very own and has spent the best part of the last 24 hours in said box, so that no one can take it off her. Poor baby. I had a wobbly few days post-chemo – Tuesday in particular I spent the whole day on the sofa trying not to puke. Only salt and vinegar pringles made me feel any better! Mum is a very wonderful Mum indeed, but her rather scary response to me whining about feeling sick  was to threaten me with immediate eviction if I puked on the carpet 😀 Since then I have been getting more ‘tiggerish’ as Mum puts it; just slowly getting back to feeling a bit more like myself. I have been trying to use my stick a lot less and pottering around the kitchen playing football with the cat has helped! I also had a very fun day washing a bath full of giant lego we picked up from a charity shop for my baby cousin… SO MUCH FUN 😀

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…and then as is probably obvious from the main pic and title, it snowed one day for hours and hours and because it is bloody freezing up here, it settled and I went OUTSIDE and made a snowman 😀 Yes, that is genuinely a snowman. It may be small and its eye and grass scarf may have fallen off in the time I went to grab my phone to take a picture, but it was too bloody cold to fix it and I have to be very careful with the cold so my fingers and more toes don’t fall off. Stop being mean and don’t bother with the comments about it looking like a turd, I’ve heard them all already. IT’S A SNOWMAN. The other exciting bit about that was that when I went outside, I grabbed Dad’s shoes and had two shoes on for the first time since… At least the start of October!!

Plan is currently to head back down on this coming Monday I think… “About bloody time!” Said Mum… Yeah, yeah, yeah… Pretty excited to see friends again 😀 In the meantime, the dressing on The Gap (which was a token bit of gauze for the last two weeks anyway) came off this morning! I now have two socks on and no foot dressings needed, so for the first time since JUNE – and I am not even slightly exaggerating!! – had a shower WITHOUT A WATERPROOF GIANT SOCK THINGY ON!!!! This went very well and although I was wondering how weird it would be, it was very much taken in my stride, as the more interesting/distracting bit of the shower was how much of my sodding hair is coming out 😦 The info on cyclophosphamide said it tends to cause hair loss in at least 30% of people and I had already had a bit of an impact off the rituximab from December… With ritux being a lot less toxic. So I was sort of already braced for it to be honest. It said it takes three to six weeks to start falling out if it is going to; I am now getting to about three weeks since dose one and the last couple of days it has been coming out at quite an alarming rate, every sodding time I touch my head. So showering was quite amusing! I genuinely do mean amusing, because for whatever mentally certifiable reason, my reaction was to giggle :/ I  guess it is better than me having stood in the shower bawling my eyes out, but I don’t really understand why I am finding it quite so funny!! I don’t exactly put a lot of effort into my hair – it never gets straightened or blow dried or dyed etc. and as mentioned before, I don’t even use a hair brush or dry it after a shower, but I am going to have to have a serious think about what to do now!! I don’t want to scalp it all off immediately, as it really could just thin out a lot and settle there… But it definitely needs a lop – question is, how short?? If I was a delicate little waif – and having naturally curly hair, I would obviously go for a crop of ruffled ringlets that would make me look like a pixie… But if I am brutally honest with myself, I would struggle to look very pixie like and it would likely instead make my face look rather horrendously round 😀 If anyone wants to volunteer to attack my hair, be my guest as it very well may all fall out a few days later anyway 😉

To round things off for this post, amuse yourselves with my Dad’s reaction to the news of my hair falling out this morning… “Ohh, that’s not good. You will be careful to look after the shower drains, won’t you?!” Ahhhh Dad priorities 😀  He has also suggested more recently, whilst watching a former school rugby legend (two years above me, so I sadly can’t claim friendship :D) captain Scotland to DESTROY Wales earlier hehe (stop crying Maria), that I should get a prosthetic toe to smuggle drugs in. It is an absolute wonder to myself and everyone else after reading this, that I have turned out SO WELL ADJUSTED. Or will at least explain to the sceptical scoffers, quite why I am a little bit weird…

In which Kath got to go home, the cat is DELIGHTED as no one else ever feeds her (apparently) and so far not been infected for over a week!! (Voldetoe is threatening it, but doesn’t have the balls just yet, as in the hospital again on Monday…)

So last post I was expecting to maybe be allowed to go home for a bit… That then got delayed a smidge, as I had a pretty bad weekend. I had a biopsy taken on the 9th, the day after the amputation and it hardly hurt at all to begin with and I was feeling pretty smug… and then it started to hurt like crap and get pretty bruised and inflamed. I’d share a picture, but that zoomed in, its pretty icky seeing my hip haha 😀 Weird, I can deal with the actual wound no problemo, but seeing my skin that close up grosses me out for some reason. Maybe I just have really gross flesh? Any ex-boyfriends care to weigh in?? I AM expecting to have a fairly exceptional scar, as it is a good 5cm long slice with quite a few stitches along it! If it were to heal without being fabulous, I think I will feel rather cheated. The bugger has been more painful than The Gap! More stitches… Easier place for me to pull them… So understandable, but I would have assumed an amputated digit would be more sore than having a chunk scooped out of you :/

 

Anyway, massive tangent there. I was feeling naff and what I was vaguely describing to ward staff and Docs as ‘infectedy’ so they gave me a few more days of observation until I was perked up again. It could very well have been all of the drugs from anaesthetic and chemo etc. still in my system walloping me; by Tuesday, my bloods were looking rather fabulous (although white count etc. royally flattened post chemo) and I got the all clear to go home Wednesday 😀 My appetite had come back as well, so I was managing to eat actual normal (some would say excessive) amounts of food again and blood pressure started behaving again… Although a single coffee managed to knock it from approx. 130/85 to 165/110!!! No coffee for me for a while then 😉 Mum did her SuperMum act again and came down to get me (so much driving!!!) and we road-tripped back up and I got to see my special little friend Mog again 😉 She cried she was so happy to see me. (She actually did, but probably because she was hungry).

Home meant checking still temp registered at local GP as being on warfarin now means very regular blood tests (three times a week until stabilised) to check how dodgy my blood is. The thought is currently that I have a coagulation problem as well as what is being dubbed livedoid vasculitis of some description. That in itself isn’t technically a diagnosis, it is more a description of what is going on with me. A bit of casual research reading medical papers and journal articles etc. (as I am prone to doing sometimes… Uni left me with serious dweeby research tendancies!) has resulted in me deciding I have the most mottled purple zebra markings in the universe. Of all the people in the world saying they have livedo reticularis (the fancy name for the mottling I get) no one has it quite so fantastically as I do 😀 Maybe shouldn’t be feeling smug about it, but it does explain why all of the Docs were calling me medically interesting (I laughed, said “you mean weird” and no one corrected me…) and one of the junior Docs came to see ‘me’ *my mottled skin* and said she had printed off some articles about it, which is always nice as it shows she still has curiosity about things she hasn’t encountered before 😀 The warfarin is GOING TO WORK anyway, so it is likely I won’t have quite so exciting mottling in future and it should also hopefully mean that my blood is thin enough to get down to my toes and fingers a little more effectively… So they will STOP GETTING ISCHAEMIC and therefore STOP TRYING TO DIE. Fester, Voldetoe… Stupid Finger… Are you listening??? I had an INR test on Friday anyway and by Friday afternoon everyone had had a chat and I got my next few doses, so the system worked 😉

Hmm… This is a largely cat based blog post haha – I have spent a very large chunk of time whilst at home feeling twitchy because I hadn’t updated this blog for a few days, reading (on the last of the Daughter of Smoke and Bone Trilogy – AWESOME!!) and talking to Mog.

Other Mog activities include apologising to her because I am not allowed to feed her as much as she needs, meowing at her constantly (which REALLY REALLY ANNOYS MUM hehehe), brushing her with the comb taped to a stick so she can’t eat me and playing ‘football’ with her with various colourful, sparkly, jingly ping pong balls. That largely involves someone kicking one to her whilst she then bats it back (almost always to your feet!) again and again and again… She is pretty fab at it (I said proudly, sounding like a demented cat owner…) and it is pretty good ‘physio’ for me, as it has meant moving around the kitchen without using my stick and giving everything a bit of a stretch. I was already managing a bit more walking (with stick) before I left the hospital, but my general strength is coming back pretty well in terms of energy as well. Somewhere I am comfy with, like the kitchen space here, I am happy enough moving around without my stick as I don’t feel nervous about falling, but I am still trying hard to walk ‘normally’ and failing as I keep automatically keeping my toes off the ground and all of my muscles and joints are still being generally sore and stiff ANYWAY which doesn’t help :/  Every couple of mornings (today being one) I have a really bad one and can barely move when I wake up, because my back feels like someone has pretzled it into a twist; but once I have stopped tensing at the pain, wanged down some drugs and loosened off a bit, I am normally a bit better by midday! Re drugs, I have managed to cut down a smidge on some of the painkillers and have my very own holiday drug box 😀 The rest are getting rescued when Dad next is down in Cumbria, as I will still be up here for a bit, so might as well use the time to sort out the ones I no longer have to take.

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So yep. I am here for a good few days. Monday I have to be back in hospital for a long day of reviews from various departments and a delicious bag of chemo… The second dose of cyclophosphamide. Kind of hoping to have at least the cryoglobulin result back by then, but the biopsy results will take AGES as I am pretty sure the chunk of Kath flesh was sent off to Newcastle for immunoflourescence tagging…?! Something fun like that. I think they tag the immunoglobulins so they can see what is happening, as well as investigating the damage to various layers of the blood vessel walls etc. Will find out more, as that is probably a load of nonsense 😀

Mum and Dad have both jumped on the ‘toe gap’ game wholeheartedly; Dad’s latest is that Death Toe has gone on his gap year… Mum and I spent a good few minutes deciding which piggy it was – the ‘stayed at home’ piggy, which sadly doesn’t lend itself as well to jokes as if it was the ‘gone to market’ piggy. Very mature. Mum also just pretended to be a hoover before, so that we could chase the cat out of the kitchen and open the door into the rest of the house, as the woodburner had the temp SO HIGH in the kitchen, I was nearly being sick 😀 She makes a spectacular hoover. MUM’S favourite toe/or lack of joke, is suggesting that I can now play that weird knife finger stabbing game thing you always see scary guys doing in shifty underground pubs… Or prisons… (In films I should add, I haven’t actually ever seen anyone other than a few drunk silly friends even NEARLY attempt it!). Only, I am to do it with a sock on and ‘miss’ to obvious general alarm and outcry. This discussed to the point where I was ‘planning’ it this morning whilst lying all pretzled up on morphine, trying to decide how much to scream when I stabbed the gap and what socks to wear 😀 😀

Speaking of socks, I can actually wear them again without them leaving an imprint in my ankles, as the ridiculous level of swelling/water retention has FINALLY gone down 😀 I have normal sized ankles again and you can once more see the general shape and tendons in my feet 😀 Assuming all goes well and I manage to stay out of hospital for longer than a week (not done very well at that in the last six months :/ ) I am going to TRY and go to a symposium conference event organised by Vasculitis UK at the start of March. It will involve a careful balance of getting there and back in one piece and NOT OVERDOING IT, but I am very excited to get to meet some more of the support group – AND – there is a formal dinner/ball in the evening so I am going to have a shower and wear a dress and feel like a human being for a change!! The last time I tried anything that involved socialising anywhere but a sofa will have been Solfest, which I spent a lot of crying because I couldn’t handle the pain from Death Toe… Even prior to that I had largely given up leaving the house, so this will be interesting to see how my energy levels manage, as talking to people etc. has also become something that saps my energy pretty bloody fast, let alone coordinating all of the getting there, hotel room and the physical staying awake/pain side of things 😀 A challenge that will hopefully not backfire. Wanting to start phasing work hours back in soon and it will be a pretty poor bloody start if I can’t manage a day sat in a seat and talking to people :/

Ahhh so much cat chat. As a final point, please once again have a think about being a good egg and donating some pennies to Leetle Broo and his team for the Edinburgh Marathon. They are fundraising on behalf of Vasculitis UK and are POSSIBLY going to do the run dressed as unicorns haha – I have endorsed that plan. Waiting to see if it happens 😉 Mega thanks to everyone who has already donated. Massively appreciated xxx

Leetle Bro running for Vasculitis UK – JustGiving link!

 

Toe Death do us part! (Credit to Dad for the title… He started badgering me to get that one used over five months ago! Not so optimistic were you Dad ehh?!) *****NOT AS MANKY AS DEATH TOE BUT PIC OF DEATH SPACE? DEATH GAP? GHOST OF DEATH TOE??????******

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 😀

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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!

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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 😀

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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

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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)

 

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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!

Toetally Awesome – JustGiving page

 

In which Kath and a very infected Death Toe & Fester are transferred to another hospital… Lots of poking and treatment commences! [Wed night to Monday night of the Second Incarceration 2017: Part 2!!] *****Horrible pictures, not safe for viewing by anyone*****

So… The Wed night saw my new consultant step in and arrange a transfer by patient transport ambulance. He offered to get me up to his hospital and I basically bit his hand off, as it nicely got me away from everything I was no longer very chuffed with. He was talking even in preliminary discussions about more aggressive treatment (not hard…. ooo I’m feeling bitchy apparently!!) and investigation, which at the point I was/am at is much preferable to fannying around and sacrificing more toes etc. on that altar… The lovely ambulance crew got me strapped onto a stretcher and then wrapped me up into some kind of Kath-bug, very snugly indeed. I dozed quite a lot on the journey and then got wheeled right up to a bed in a little shared room quite late at night. I got started on quite a hefty dose of a different, stronger iv antibiotic, which continues three times a day at least throughout this post… A lovely member of the ward night team got me settled in and I conked out pretty easily, having been absolutely shattered for days on end by that point.

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######Before I go any further, major viewing warning for further below; exposed flesh-of-Kath, bloody plex lines and infected digits!! You know you like it 😉  ########

Thursday I had a very busy morning, getting a femoral line put in… I already shared a pic of this on my Facebook page, but it is glorious enough to share again 😉 See below! I had some bloods taken out at that point and flasked for another cryoglobulin test… My Dr is still thinking it could possibly be cryo! It always fit in terms of symptoms and progression and a cryoglobulin test done earlier this month showed a weak postive – in that there was cryoprecipitates in the sample, but too little to identify what kind/test the sample properly. So there was a hefty blood sample taken out of the line just before it was capped… Result not yet in…

I then got wheeled down on my bed – through the WHOLE HOSPITAL 😀 – very dramatic!! – to the renal dialysis unit, where I got hooked up for day 1/5 of plasma exchange again – see resultant carnage above! I previously had this in December at Addenbrookes and the thought behind it is that my immune system is attacking something in my blood plasma (if it is cryo that I have, then it is attacking the cryoglobulins!) so plasma exchange not only gets rid of the antibodies attacking the bad guys but also stops my blood being all sludgey (which would be explained if it is cryo, by it being full of cryo blobs as they are big bastards when they fall out of solution (when I get colder)!). The lassies on the dialysis unit are lovely and got me settled in quite nicely; I was still so tired, I was completely out of it and asleep for most of of the time. Not sure how long… Maybe five hours? They removed about three litres of dodgy plasma! One cool thing I just learned (Monday night…) is that my tingly lip thing I get with the citra-lock they use to seal the lines between use is a known but quite unsual reaction – so that explains when they said I am “very symptomatic”!! I had told them as you are asked to mention anything weird and it was pretty bloody obvious – and has happened each time! – but didn’t realise it was so unusual!

Thursday eve I also got a visit from the parentals; they were doing a cross-over and meeting at the hospital, Dad coming up from down south and Mum down from Scotland – pretty good organising, but slightly dysfunctional 😀 😀 It was a bit of an emotional one. I had a chat with my new consultant whilst getting plasma exchange (hereafter plex!) and basically, the rituximab I had two infusions of in December isn’t an aggressive enough drug/hasn’t acted quickly enough really to be safe leaving by itself.

[Bit of a recap…] My disease (whatever it is) progessed too far without being checked before I started any treatment in the first place (my opinion, based on symptoms and time for recognition etc.) and then there was a serious load of faffing around when I was in hospital before Christmas. It is this bit that I am attempting to let go (both my own side of it and the part anyone else played), as they couldn’t give me the rituximab at that hospital – no funding for it, based on my diagnosis at that time. I COULD have said yes to cyclophosphamide at that time, but I was desperate to avoid it if possible, so I dug my heels in, made myself a pain in the arse and after weeks of sitting in agony watching my toe die, in a sobbing morphine mess, I got referred to Addenbroookes. Once there I got plasma exchange and they also sorted out rituximab for me, it being my preferred treatment and appropriate given the symptoms and my age/gender. So…. My toes kicking off twice so far this month is not necessarily to blame on the rituximab not working, but does mean that whatever benefit it is doing is not strong enough at the moment to be holding back the vasculitis/sludge blood.

Right!

######### Manky toe pics below!!! Scroll down fast to avoid 😉 ###########

The below is really pretty bad, both in terms of how fast it came on, it being a recurrent scenario and it being a horrible scepticemia risk as being immunocompromised on a few fronts, I basically have to go in asap and get iv antibiotics stat. This in itself can be quite hard to argue for, as I don’t present infection normally and was actually really quite bad before I realised as I don’t get a temperature, am used to them hurting a stupid amount anyway and was also just thinking my joints etc. hurt because the rituximab wasn’t working yet… Take note (if you can bear to look) at how the bit below the demarcation line is inflamed and infected now 😦 This is not good news and the vascular team came to see me and mri was sorted to look for osteomyelitis to see if it was choppy choppy time!

I’d say I am sorry for the above, but I’m not, I actually like making you all feel icked out 😉

So yep. Parents came and managed to converge and were here at the same time… With the ritux seen to be not working quickly enough, my Dr talked to my Drs at Addenbrookes and the consensus was that I really had to go for the cyclophosphamide now, or very seriously risk regretting not doing so.  This got lined up for today (Monday) and I am at this moment watching the nasty toxic stuff dripping into me, hopefully making a beeline for my immune system to do what it is supposed to do and bypassing my ovaries and my hair etc. etc. and all the other things chemo kills.

I think its all well and good me preaching education of the masses – particularly with respect to the emotional impact of these kinds of treatments – but I need to be prepared to practice what I preach 😉  The ovaries are the main one thats getting to me and the reason for the parent visit being a bit emotional.  They know only too well how long I fought to avoid cyclophosphamide in October and November – hell for the vast majority of six weeks! – and to now have no other options left is rather depressing to put it mildly. Before anyone pops up and suggests it, I can’t get eggs harvested as I am way too ill for the time that takes and having polycystic ovaries, the drugs required to get eggs ready to harvest would essentially put me at exciting risk of lots of cysts rupturing left, right and centre! If you google cyclophosphamide you will find it is not really first drug of choice for women my age for this reason. So I had a very quick cry with Mum and then we both told each other to get a grip, because as we decided previously, it isn’t very productive getting a cry on and then having to say bye – which we did, only about ten mins later, as one of the ward patients was having a serious anxiety attack at how many people were in the room and visitors were asked to adhere to the visiting times. So a good thing we didn’t get each other hyped into a drama 😉 I guess I will process it at some point! Just probably not whilst still in hospital.

Anyway. Something a bit different… 28th February is Rare Disease Day. This year to raise awareness, there is a photo challenge with the #rarediseaseday on instagram and twitter…

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A handful of us are taking part (on an as and when/can basis!) on the Vasculitis UK Facebook support group and the results have been both amusing and quite poignant. Me being me (and currently in hospital once again) I have been looking for entertainment in the one hour out of every 24 that I am both awake and fully concious 😛 It has so far proven quite amusing reading everyone else’s little snippits and insights into their day, but there have also been some brutally honest posts, where I get the feeling a few people are sharing things with their friends/family via their own pages that they normally don’t feel they can.

Friday, I was still absolutely buggered and started to be a bit upset again about the cyclophosphamide. I talked myself down a bit by shelving it for now and will revisit it later when I can handle it. Same has I have done with the toe 😀 I already even have a joke – ovaries are ovarated 😀 Cammaaaan… Thats pretty funny 😉  I’m basically looking at it along the lines of all of these Docs wouldn’t be saying it is now time, if it wasn’t time. It happens to other people all the time; statistically there was always a chance of it being me and it would be rather big headed to think it wasn’t ever going to be me! Other exciting (?) thing on Friday was the mri of the foot… Death Toe and Fester were being little shits still so it was NOT fun AT ALL – normally I absolutely love a good mri, consider myself something of an expert 😉 But when I have infected toes, it hurts a LOT. All the vibrating and moving around… The whole point is keeping as still as possible and I kept getting involuntary nerve twitches that made keeping still pretty impossible. That has been going on the last few days, noticed it a lot in plex today as it was waking me up every time I dozed off! After the mri I basically conked out and didn’t really properly wake up at all until Sunday haha – Saturday I didn’t do much except sleep. I had more plex and had an exciting moment that the nurses called a “waffy moment” which amused me, as baby cousins always called me “waffren”… But my BP dropped to 88/44 at one point which is quite excitingly low for me! I am normally about 125/88 as a rough average… and that is with a lot of medication bringing that down – sludge blood remember 😉 I was fine afterwards anyway, they think it was because I had food and it pulled all the blood to my stomach haha 😀 Toe dressing also got changed. That was enough for me, I went to sleep and didn’t bother with much else 😀

Sunday I had plex early on – I wacked on the last Harry Potter audiobook and was asleep again in minutes, having been awake maybe for an hour, which included having a slice of toast 😀 I slept for at least half of the treatment and when I woke up, although I looked like the below (eurghhhhhh!!!) I was a lot more awake than then last week or so – remained awake for the rest of the day with only minimal crashes!! Toe wasn’t as sore either as it had settled post dressing change and meant I could have less oramorph, so wasn’t as wacked out. Dad visited as well which was fab 🙂

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Note the stylish antibiotic bag necklace :O All the cool kids are wearing them…

Just had a little look on Patient Access to cancel the next few dressing appointments in advance… My discharge letter from admission through A&E is hilarious… In a sad, not really funny kind of way. It consists of about three lines. Maybe two sentences. Blah blah 28 year old woman blah “admitted with suspected cellulitis of her right foot…” Blah blah “We gave her IV antibiotics to cover for cellulitis, however her CRP is less than 5.” Yes, yes. CRP is the important thing to focus on.

Anyway… I think I just lost a bit of tomato or corned beef down my pj pants… :/

Today (Monday) was last day of plex. I started off with breaky nice and early to try avoid BP crash, but had another waffy moment anyway. No idea why! Managed to be a lot more awake again today. Line is staying in for a few days anyway, but once back up on the ward, had a big bag of saline through it and had the relatively innocuous, quick bag of cyclophosphamide. It comes with many pills and bits and bobs to protect your bladder and kidneys, stop you puking… So far no pukey! Woo! Mri scan was reviewed today and it is not very conclusive, but if there is osteomyelitis it is confined to the already dead bit of Death Toe. I will stay on antibiotics for who knows how long… Will be getting another biopsy to look further at possibilities such as CPAN and cryo (both really rather rare types of small vessel vasculitis) and anything else it could be… and may eventually have a bit more of a firm diagnosis one day. But! The exciting bit… Tomorrow, I am booked in for surgery and…

Death Toe is getting the chop 😀

This is the the last adventure of this particular Death Toe 😉  (I will keep writing, calm down, keep your panties on…) I am sorry to say I am sceptical of being able to say there will be no more adventures of Death Toe(s) but at least from this one, goodbye 😛 and from me (to DT), FUCK YOU, YOU PAINFUL NASTY LITTLE SHIT!!!