Wed & Thurs of Week 7: Cracking on with some serious treatments! (Days 45 & 46)

So my last post was a bit of a lengthy tome… This one only covers two days, but I am feeling waffly and self-indulgent haha! To switch it around a bit from my usual order of newsworthy items, in terms of ward life nothing too dramatic has happened, except some changes in the occupants!

The lady I previously mentioned who I THOUGHT was possibly hallucinating cats… Turns out, yes she was. I had previously spoken to her cousin a few times, either whilst calling him and passing the phone over to her or in person when he came to visit one day. She had a very bad night Tuesday night and woke up several times confused and loudly calling out, demanding that the lights be turned on. This being at 2am, 3am etc in a room of sleeping women. Problem is, she didn’t really know where she was and wasn’t able to remember to use her buzzer and by the time I got to her on the two occasions she woke me up before a nurse came, she was already partly out of bed – fall risk!!!!! SO I was essentially quietly pleading with her to remain in bed, calming her down, telling her why the lights were off, using her buzzer to get a nurse in asap and also trying not to wake everyone else up – kind of pointless when she was yelling 😀 She was clearly not too well that night and then got sick quite suddenly on Wednesday and I also noticed that she started hallucinating cats walking around the bay… She had mentioned cats before a few times, but always in the context of stories. This was quite obvious lucid hallucinations.

[To confirm, featured beauty of a cat is Mog, my parental home dwelling feline, possessed of the most stunningly thick fluffy stomach, but would happily rip out your spleen if you touched it 😦  I have had to learn to admire without touching!!]

The ill lady was moved to her own room on Wednesday afternoon as she was vomiting, for infection control reasons, so I gave her cousin a message to advise him to call the desk and get an update. When I told him about the cats, he said hardly anyone had seen it in action and he had been having a real struggle getting people to believe him as she always discussed it in the context of past cats, not current cats :/ It kind of made it hit home how hard it must be being the relative or carer for someone who is showing signs of dementia or similar, where you need it to be taken seriously to get help and assistance… You are essentially relying on medical professionals either witnessing what you do, or believing your account, which can then challenged by a suddenly rational and sane relative, leading to trust problems etc :/

I am finding one of the other ladies I am in close proximity with a touch more difficult. She is possibly just very hard of hearing and doesn’t realise/want to realise, but she has no concept of a conversation and will quite happily let me talk in response to her for a few minutes and then continue on with her train of thought as if I had never spoken >.< We have als0 just had the conversation about whether or not I ‘am finished’ – ie could I please turn off my desk lamp, as she was woken up by someone cannulating her, and cannot get back to sleep, as the light is shining too brightly through the dividing curtain. This is  totally understandable and I turned it off immediately so she had a chance to fall back to sleep (completely planning to turn it back on once she starts snoring again haha), only to have her then turn HER lamp on about ten minutes later 😀 Blehhhh. I can’t see well enough in the dark to type easily without it 😦 Whilst I am on a bitch roll, I also had a teeth grit moment earlier with her, along the lines of her not at all listening to what anyone else says ever, where another woman was holding back tears from severe arthritis pain and she blithly said something to the effect of, ‘oh yes, pain is awful isn’t it, like toothache… Toothache is awful!’ Yes. Toothache can be awful. But it is not the same kind of pain as arthritis pain and you cannot really compare two sorts, between two different people.

When you are in a room where you are the only one not taking any pain medication (rude of me to notice?), please refrain from talking over someone else like that :/ …aaaand there are those sweet snores. Light back on! 😀 I prefer her when she is snoring 😉

I had a lovely moment with one of the ladies before talking wool – yes, this is the conversations I now have on a daily basis 😀 This is one of the ladies in my bay and she crotchets, whereas I am very slowly and lazily teaching myself to knit. I dug up the page where I bought the wool I am currently using to show her – and yes, it is horrendously expensive for wool and is coming from the US… But every time I look at it or touch it – and then every time I visit the website I get gooey feelings in my tummy :O I have some serious wool issues apparently!! https://www.etsy.com/uk/shop/KnittedWit

Wednesday was an exciting day in medical terms, as it was the first day of three pulses of methyl prednisolone. I was already taking 30mg prednisolone daily and have been since hospital admission nearly seven weeks ago. I also spent several months prior to that this summer tapering down from a 20mg dose I was on as an ’emergency measure’ when Death Toe first kicked off… It clearly did shite all to fix THAT situation >.< I am now also falling into the category of ‘long term steroid use’ so having discussed with one of the doctors here, will likely be starting some kind of calcium supplements to protect against osteoporosis tomorrow. I have already been taking super high dose Vit D3 supplements for over a year, through my own research and getting the ok from GP, when mid-summer, having spent HOURS outside each day, I was still showing low blood levels. Until now I have been buying it myself as no one so far thought it worth adding to my repeats… Depending on how the repeat prescriptions/shared care thing is worked out maybe that can be added on finally, as yep, longer term steroid use also has implications for Vit D levels :/ At least I got a head start on that one!

https://www.drugs.com/methylprednisolone.html   –> I LOVE that there is a website called drugs.com 😀

It is the middle of the night/early morning Friday and I have just finished pulse two – pulse meaning bag going in as an iv through a cannula – this one finished so late as the cannula used yesterday was already being a douchebag for the first dose and today refused to flush at all and had mega kinked. So had to wait for someone to come and recannulate me at about midnight :/ Doesn’t bother me as I am usually awake then anyway, but what is a pain in the arse is that this must now be at least 20 cannulas in the nearly seven weeks since first admitted… SO when you count the other two weeks this year when I was on the burny burny iloprost, I must now be up to at least 30 this year! When you add in all of the millions and millions of blood tests, I have “unfortunate” veins – best description ever, as landed on me earlier this evening when the flush refused to work 😀

Other members of the dermatology department have also been to see me since the photoshoot to start sizing up possible biopsy areas and get a better understanding of the rash and where it is most prominent etc… One of them, when confirming that the biopsy would NOT be taken from anywhere near Death Toe, described me as “peripherally compromised” 😀  Along with the ‘non infectious offensive waste’ sticker on the bins in the bathrooms, I am coming across some of my new favourite phrases these last few days!!

…is it wrong to eat a cheese stick at 2am? Nahhhh… Cheese stick and salt & vinegar pringles??? Nahhhhh 😀

…Complainy light woman is currently singing to herself in quite a sinister manner :/ Maybe in protest at the light being back on?! Ahh and now someone’s machine is beeping – obviously in no way intentionally or by their choice and she is first asking me if it is me beeping… Yes, because I make machine beeping noises at 2am for fun all of the time… and because you making passive agressive faux questioning comments about it is exactly what we were missing to solve the situation, thank goodness you were here :O If she tries to insinuate tomorrow that my light kept her awake when she has had a cannula, a blood pressure check, a beeping machine and at least three toilet trips since midnight I will be most peeved…

The other exciting medical thing that happened to me today (technically yesterday now… I mean Thursday!) was getting the first of five planned sessions of plasma exchange!! This is being done again as a bit of a temp measure to reduce the disease activity, as whatever type of vasculitis I have, they have narrowed it down sufficiently that it is very likely that plasma exchange is going to be helpful 🙂 I will get Sunday off – apparently this will give my body a break, during which time I can build up lot of lovely new plasma to be sucked out of me on Monday 😀

“This treatment is sometimes used in patients with severe vasculitis where antibodies in the blood are thought to be important in causing the disease. The treatment involves removing antibodies from the blood using a machine and returning the “cleaned” blood back to the patient. The treatment may necessitate giving blood products to the patient including plasma, albumin or immunoglobulin. It may also involve giving drugs to thin the blood and prevent it clotting in the machine.” As copied from the Vasculitis UK procedure glossary!

So this is what the tunnel line – Hendricks III – was for. My blood was sucked out of me for about 2 hours, and span in a centrifuge to seperate out my plasma,which can be seen in the baggie in the middle pic – plasma is yellow!!! Then some bits and bobs from donated plasma are added back in and given back to me, so I have new plasma without any bad guys floating around in it 😉

The main side effects are being dizzy and shattered – the gentleman in charge of the procedure and the insane machine pictured above stayed the entire two hours and had to deal with me and my billion questions 😀 – but mainly he was there in case I had any serious reactions and to make sure I didn’t keel over! I managed very well (he said) and he basically left me with the warning that I will feel the full force of today’s treatment tomorrow… So having so far not ventured down again since Mum left, I went on a mission after a hefty nap down to the concourse where all the shops are. This involves about… 30m horizontal walking and down three floors in a lift in the middle… So about the absolute exteme I can manage walking anyway, given the dead toe thing happening, although the lift in the middle gives a good leaning option halfway 😉 The thought was, if I am going to be increasingly knackered and feeling woozly the next few days, I am sure as hell going down at least once whilst I think I can manage it!

I ended up going to the body shop and spending almost £25 on myself in an epic splurge of awesome smelling goodness – I may not quite have finished my shampoo/conditioner/moisturiser, but by the time I can walk that far again, I might have 😀 So yep got some rainforest shine ones which are the best body shop ones for curly mad hair like mine (used before, not speculating!!) and! AND! something amazing called… rainforest moisture hair butter apparently – it is supposed to be used as a conditioner, but I scrunched some into wet tangled curls and just left it in, and my hair now smells amazing and has gone into soft fluffy curly wonderfulness. Yes, it is a complete untamed mess, but I am very grateful for having so much of it 😉 It makes an awesome pillow/wall to hide behind!! I then reached floop level and went and got the world’s largest chai latte – no shot of coffee as I suspect too much caffeine would seriously confuse my system at the moment… In fact it probably already is, as I am awake still haha 😀 It was AWESOME as was the cakey thing… The two handles alone made it worth getting the largest size!!

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I did get seriously shattered when I was down there and spent best part of an hour looking like an escaped patient, tunnel lines dangling around and having some serious wall leaning times… BUT spending an hour or two off the ward now and then is very good for the soul. Also then hit up the M&S food place on the way back and got above mentioned cheese stick and a reduced chicken/pesto flatbread thing that has ‘tomorrow’s lunch’ written all over it, that the lovely ward staff have let me wang in the fridge 😀

I had an awesome chat with littlest bro, who remains smack bang in Hurricane Otto territory and is possibly stranded now as the government are cancelling all of the buses :/ He was trying to escape to…. Mexico….? Check out his very strong beard 😀 😀 (Sorry sprog, couldn’t help myself!! xxxxx). Also see side chunk of curls that escaped me lying on them for epic soft curliness – you sadly can’t smell it, but let it be known that I smell incredible.

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The next few days hold one more dose of methyl pred, four more loads of PEX, a deep biopsy of my livedoid rash (courtesy of dermatology), some kind of calcium/alendronic acid thing to stop my bones being leached by the steroids and I THINK a visit from the vascular surgeons to have a decent poke at Death Toe and HOPEFULLY revisit the idea/set some criteria in place for an amputation… Not enjoying watching the little bugger falling off. Although, to give him his due, he dealt with the mission to the shops very well and has actually had a relatively good day! This may also be due to not having missed any painkiller doses today though…. Ahh maybe Death Toe was having a nice day?!

Anyway, the cat is a bit out of the bag re me turning 28 today (Friday!) as a few have already jumped on it on good old facebook – one of the lovely ward staff was making sure to tell everyone, presumably to make sure I get extra loved up tomorrow 😀 I can quite happily say that I have not felt a moment of being sad or gloomy so far, I think if I had remained at the previous hospital in that weird limbo I would have been bawling my eyes out, but I don’t feel sad about it right now… Even being SO much further from friends and family! I feel like for the first time in two years I am in the one place that stands a good chance of making me better, so I can’t be sad about what is basically just an arbitrary date. Not when I have had so much love thrown at me over the last few months 🙂 I also had Soz land the below epic glittery collage on my facebook wall bang on midnight, which triggered off some happy tears and some laughing at how so many of the times we are together we are covered in glitter 😀 She is the best of eggs xxx

kath-soz-glitter-4evaaaaa

Whilst we are on fave things in the world, something before popped up to remind me of my fave book 🙂 The Silver Wolf by Alice Borchardt (the sadly deceased sister of Anne Rice) (and the remainder of that trilogy and her other two book series, The Dragon Queen) remain my favourite books of all time, ever. Anyone who knows how much I read, may appreciate that is a big claim to fame – I still re-read them all almost every year and have done since I was about 12. I remember the very first time I was reading The Silver Wolf, Mum had bought it for me as a present for a school trip to France and I was reading it sitting on the coach and my mind was actually blown by how BEAUTIFUL her writing is 🙂

One of my favourite lines was always the below, so much so that I had it cheesily pinned onto my noticeboard in tiny Uni room in first year… It always really beckoned to the little insomniac in me 😀 I shall end on this and go to sleep 😉 Got a stash of packages and cards to roll around in tomorrow, the majority forwarded on from self-purchases haha 😀

“[She] followed the wolf drifting into darkness where, in the shadowland of sleep, she and her companion could run free … through the endless forests of her dreams.”

4 thoughts on “Wed & Thurs of Week 7: Cracking on with some serious treatments! (Days 45 & 46)

  1. Cat says:

    Hi im a fellow vascy at addenbrookes although im at the start and they havent kept me yet. I also work at the rosi addenbrookes maternity unit. Glad to see you got here. For todays bday trip i highly recomend stsrbucks gingerbread latte and the enormous belgian teacake from costa. Also something pretty and sparkly from the stock shop, oh and that death toe himself decides to detach as a surprise presentxxHappy Birthdayx

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    • Hiya Cat 😀 Thanks for the message! I think I got kept in as they had essentially given up on plans up north!! Plus it would be a bit heartless to send me back a six hour drive away in the state I am in, without any more progress haha! My parents did a surprise visit just now and took me down to the outpatients WRVS cafe for lunch 🙂 🙂 I did get myself a HUGE chai latte as you will have seen and to be honest I probably need to be careful with caffiene intake! I would LOVE Death Toe to remove himself – literally seeing vascular studies team in half an hour which may or may not be to have a think about such plans… Cross toes for me 😀 If you are in and fancy coming for a blether – NO pressure at all, but I am up on C5 🙂 Thanks for the birthday wishes! xx

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  2. What a marvellous narrative of all that is going on since you settled in at Addenbrokes Kath! It certainly sounds like you are getting excellent care !! Am so pleased for you!! Love all your comments about your fellow patients—-you do keep us all amused!! You are also educating me with all thr knowledge you have attained since moving there!! I am ===through you learning more and more about this disease!! Have to admit—never heard of it until I was diagnosed in May!!! Never ever came across it when I was nursing!! I gave up nursing in 1983—so became quite out of touch. Spent more time learning German and looking after Prem. twin babies until they were 18 months old!! ——Now being an old lady like your Grannie, takes me all my time to try to keep up to date with so many things and at the same time –keeping an eye on my 83 year old husband whose sight is really bad—registered blind in2014!! also my 74 year old brother who sometimes seems a bit confused!! Honestly our house is a bit like an Old Folks Home!!! Today am glad to say, got all my presents, cards and calendars ready to post tomorrow to Germany and the States!! Well my dear, was a pleasure to catch up with you again—so glad you had a fab. Birthday!! Catch up again later!!

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    • Thank you Peggy – I am glad you feel like I am helping you learn thing, but please do remember I don’t even have a specific diagnosis and all of the bits I am learning are very much in relation to my subtype and treatment only :/ I would hate for someone to get the wrong idea about their own condition or treatment options!! Sounds like you had a productive day 🙂 I struggle a bit warring between not wanting to be mean about a room full of sick people and then thinking actually, you don’t have any choice at all in who you are stuck in a room with and it would be unreasonable to expect me to be nice both to their faces and then behind their backs all of the time, particularly in light of some of their attitudes towards (MY!) privacy and personal space… Remaining completely bewildered if I am honest! A few rows off finishing a mitten and will then crack on with an update 🙂 xx

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