I’ve had a wobbly few days and not updated everyone on ‘The Adventures of Death Toe’ – and ‘The Trials and Tribulations of Kath’ since Friday – and I’ve now started week four of hospital life! I’ve massively missed it – typing was a very very good pain distraction and this blog has also been a good way to document this for myself. Also from general swamping feedback, I am touchingly aware that it has been in parts amusing (in a how many drugs is Kath on today? sort of way…) and informative/relateable for various groups of friends and online vasculitis buddies. All of this lack of blogging can be blamed soley on them wacking me on a second five day course of iloprost and me being a bit of a cannula pest. I won’t lie – I have been an angry tearful grump because of it, which today I am finding a bit ridiculous and having a proper stern moment of telling myself to grow up! A lady I have gotten to know well in here (no one I have mentioned at all previously but a regular in the last few weeks of my life) has just been told yesterday that the problem isn’t the sepsis she came in with. Her cancer is back and is terminal and she needs to update the rest of her family today. She quite casually told me this morning, before her meeting with the hospital support staff. I was having a bad pain morning anyway with Death Toe, but this was enough to tip me into a few hours of sobbing – to the point where I took myself away on a hobble, as if she can remain calm and pragmatic, the last thing she needs is a girl she doesn’t know at all falling to bits all over the place!! Its a weird mixture of being distraught for her and her family, in a lot of pain anyway myself today and then feeling ridiculous and guilty for being such a drama queen over my toe and feeling like her situation puts a sharp perspective on my whining… AND then knowing that (as my faves would say and as I have spouted many times in the past) ‘you shouldn’t ever compare pain or situations as that is very silly’, so feeling ridiculous for worrying about THAT aspect of it – I think massively overthinking it best sums up my morning!!
I am a weepy mess anyway in here 😀 I had a proper shaking, clammy, dizzy pain wobble yesterday and then lay down quickly so as not to FALL down and then started crying because I was scared… and one of the nurses was quietly asking if it was possibly a panic attack. Now I have had one before once, at work, not long after a rather traumatic break-up and it felt NOTHING like that – it felt like a drug wobble or a surge of infection flare up, both of which are very easily possible with the amount of meds I am on/being riddled! But because my obs (blood pressure, temp etc.) don’t show anything when this happens, no one at all wants to attribute it to the infection I am still fighting (I presume… blood tests? Anyone?). Apparently unless you get to 38 degrees you don’t have a fever… I have had SO many infections, pneumonia, cellulitis, kidney infections etc. and I have NEVER got above about 37.8 at the absolute most, despite having been so ill I’ve been immediately lobbed on several kinds of antibiotics with sepsis or been so out of it I am fainting trying to get into the shower. This particular repeating ‘argument’ for want of a better word has been draining me the last few days, as I am already massively aware I am asking many questions, being very paranoid about my kidneys etc., as well as crying a lot… I don’t want to go down in my notes as having panic attacks as well, if what I am experiencing is merely symptoms of my body fighting an infection – but just without the high temp they want to see!
Oops sidetrack… Basically, I know I am a snotty mess a lot in here and I do appreciate that I am allowed to feel scared and worried and that crying is a good release for it, blah etc. But I also know that I cry a ridiculous amount compared to some anyway 😉 I remember being in Primary School and quite frequently being absolutely distraught because two of my friends would be having a playground argument and I would act like the world was ending, everyone hated everyone and no one was ever going to want to play together ever again. I would then start bawling and snotting to the point where the lovely playground ladies would be comforting ME, not the ones involved in the fight!!
Back to the iloprost. Juice of the devil. See meerkat dude above… It isn’t necessarily a new medicine for me, but the slightest sniff of it now makes me shudder all over. Most people who have severe reynauds phenomenon, which is similar to how my digital ischaemia presents, would have a course of iloprost once or twice a year at the most. It (APPARENTLY) dilates your small blood vessels (so ideal for fingers and toes) and is the one that I have previously been in hospital for, for two seperate weeks earlier this year. You get six hours a day, for five days and it can be thrown at you on levels one to five, depending how hardcore you are. It is the same drug that I had five days of about a week and a half ago and tolerated it amazingly well and was feeling quite smug about it! They have thrown it at me AGAIN (that makes four times so far this year in case you got lost) as it is one of the few emergency measures they have to open up the blood vessels into the living part of Death Toe to keep as much of it as possible. Last week I absolutely smashed it and was getting up to level five easily with minimal side effects compared to previously. This week I have been a complete migrainey wimpery mess again 😦 I found a few amusing ‘chronic illness’ memes this week and the below particularly made me laugh – there is nothing further from sexy than having sweat dripping from your face and being the colour of a tomato! 😀
I had been in the habit of blogging late into the night, just due to how my normal routine and hospital routine had meshed… But when the iloprost is being plugged in at about 6pm and finishing at 10pm – AT THE EARLIEST (and by the time that has finished I still have a bag of iv benzyl penicillin to go) – I am completely buggered afterwards and can’t really function beautifully from about 8pm onwards anyway, due to dripping with sweat and wanting to kill anything remotely involving light or movement. Anyone who thinks I am sweet tempered should see me a few hours into a syringe of this business 😀
The cannulas are a different issue, but the iloprost doesn’t help as it is a particularly burny drug when it goes in, especially in the smaller veins such as those in the back of your hand. Over the last few days I had cannulas in the back of my right hand/wrist (being right handed also not helping there!) and they both went nasty and inflammed rather suddenly, to the point where I couldn’t move my fingers and they were threatening the all too familiar early signs of cellulitis (which I am sadly overly used to 😦 ).
EDIT: Apparently its called ‘superficial thrombophlebitis’ – irritation or damage to the blood vessels by irritant drugs, or damage to the blood vessel from intravenous cannulas 😀 I do love a new medical term… and should maybe stop lobbing around the word cellulitis in my mission to be less of a drama queen 😀
Weirdly, this is actually more painful than Death Toe – maybe with it being a new kind of pain I am not used to? and I have basically had two evenings now where I am BEGGING someone to get it out of my hand as soon as possible. So I am now on something ridiculous like cannula 11 maybe in 22 days – and this is drastically more than they expect and I am now on their naughty list as well for being a pain in the arse to cannulate 😦 I wish I had wonderful veins. Next life, I will have wonderful veins!
Below is an inflamed wrist a little while after having got the cannula out (I can’t even tell you how sore that is, regardless of how pathetic it actually looks…) and the most amazing temporary ice pack ever used – NHS finest minds and resources!! – which was absolutely heaven on the back of my hand to the point where I was making squeaky joy noises.
To summarise… Death Toe was on annual leave, because I got wacked with double zomorph (slow release morphine), more iv benzyl penicillin, a second daily load of ramipril (relaxes the muscles around the small arteries – old people go on this so they don’t need to have a heart bypass eventually ha!), high dose clarithromycin twice a day, then six hours iloprost daily – which opened up Death Toe again to let the still ongoing infection wallop me some more – all in the space of one day 😀 😀 It has taken a few days to level out from it all and stop feeling quite so light headed!! Clarithromycin by the way (if iloprost is the devils juice…) is the devils biscuits – I thankfully so far haven’t had any of the usual gut/thrush wallop that people tend to get from antibiotics, but it leaves a metallic taste in your mouth, as if you have a load of dirty pennies on your tongue constantly – and it won’t go away after eating/drinks/sweeties!! Or at least it does briefly, then returns the second you finish 😦
I got a lot of time with my parents these last few days, which has been really lovely. Am still finding it a very surreal place to be and an incredibly frustrating situation, but having people to vent to in person and to distract you makes it easier. Below being an example of a mid-blog enragement 😀
In the literally five minute ward rounds chat this morning, I was under the impression we confirmed that I was not on the methotrexate again yet because I was still actively infected – still on a LOT of antibiotics and no recent swab or blood tests in the last few days to say otherwise that I am aware of. So the bay nurse just came round now and said something along the lines of “Now I understand that you are refusing the methotrexate because you don’t like the side effects… But the Dr [not the replacement consultant I saw this morning… Some other Dr who I talked to yesterday maybe for five seconds on ward rounds?] has said that you DO still need it and has urged you not to refuse it any further…” [paraphrasing]. Once again, my blood is boiling. My toe is literally falling off. It doesn’t get more literal. If they say I need to go back on the methotrexate to keep the other toes happy before I get any blood tests back/biopsies done/mri scans done etc., then of fucking COURSE I am going to take it. MY TOES ARE FALLING OFF. I am not – and have never pretended to be – medically trained. I want things to be EXPLAINED to me fully and won’t accept patronising or half-arsed lazy justifications, but to hear that my charts say I am refusing a drug is infuriating. As above, I talked to the replacement consultant this morning about this and said I understand I am still off this because I am infected… Do you want me to ask for a swab when dressing is changed this morning? Yep, fabulous, wonderful, move on to the next patient, bye. If I was going to refuse ANY drug it would be the iloprost that I’ve had four times now this year, twice in the past three weeks, that makes me feel like death on a stick (not related to Death Toe). I have made no secret of being delighted not to have the methotrexate messing up my brain – I didn’t realise how bad it was until I was off it! but bloody hell. Hoping I can clear this up tomorrow without going off on another rant. I reckon I am probably getting a label as being horrendously difficult, not just for the cannula issue 😉 Asking for my notes may be actually dangerous now and not just for my health haha 😀
Right. Happier note. Friends coming in in… half an hour. Had lovely parent time. Not dead. Don’t have terminal cancer. Still able to have a giggle about some bits of this. Got some pictures of my friends’ dogs sent through especially for the good feels… People can come and see me, but these beauties can’t and I miss them 😦 😦 I’m not ever planning to have a dog myself but these little ladies (one of them is actually horse sized) always make me smile. The spaniel has a particular habit of licking my foot wherever the currently dead toe is and making me nervous she may decide its like some kind of baked snack good for her one day 😀
Yehhh dog pics, deal with it. Iloprost shortly. Going to go pee before I can’t bend my arm – again, literally, for six hours. Woo.
Two more happy notes. Firstly. Check how beautiful the slow release morphine pills are. They make me think of disney princesses in ballgowns…
Finally, you know you have a good friend when he is asking which of your possessions he can have when you snuff it (he wanted my doc martens for some nefarious strange fetish I don’t want to delve into…), and the conversation naturally turns to funeral plans 😀 FYI I am NOT terminal and am not expecting to BE terminal, but if it does ever happen, I’d quite like to be made into a glitter bomb 😉 Maybe released at the pinnacle of a massive rave from the ceiling hahaha 😀
UPDATE: So… I had a wonderful friend visit – involved moist cupcakes and breaking every hygiene bed sitting rule we could manage 😀 and was expecting the iloprost at any moment, to the point I was wincing when the nurse came into the bay… Turns out that although it had been ordered as a batch of five days worth presumably (as that is the standard protocol…), there was none in the pharmacy/fridge/cave of doom, so it is being… I can’t even bring myself to type this… It is being COURIERED FROM LANCASTER as we speak. Because heaven forbid I didn’t complete the five days. Its extra hard to feel happy about your fave drug when its going to now finish at.. currently 4.30 am at the earliest… and is just being that little bit extra faffy and draining on the resources of the NHS. Wondering if it gets a taxi – by itself? With a chaperone? Apparently it can also hitch a lift with a blood transport van? My mind is boggled. I’ve actually stopped being outraged and just gone now into bewilderment. A mild, passive kind of bewilderment. At least I can still move my arm for a bit 😀 😀 Going to knit some more multi-coloured mini bear!