EDIT: So I HAD a featured picture that was something to do with sweetie wrappers and managed to completely lose it… It had amused me, as one of my Aunts has a cheeky habit of throwing sweet wrappers over her shoulder in her sisters’ cars/houses but if you want to see her seriously lose her cool, just put a single empty wrapper back into a tin of quality street at Christmas 😄 My NEW featured pic is one that always makes me quietly happy, of a lone wonky tree on a common near my home. I took it two summers ago on a particularly happy day as I had managed to get to the top of the hill 😛
So… Yes I am no longer incarcerated! I actually started writing this on… Tuesday? and was feeling variously awful all week and then started getting teases of a weekend release and didn’t want to jump the gun in terms of exciting either myself or friends/family! Currently in the car on the way up the M6, having been picked up from Addenbrookes by Inside Friend (of other hospital fame) last night 😄😄
EDIT: Now currently on MY SOFA AT HOME – with Inside Friend still here, sitting on the floor next to my GIGANTIC UNICORN LAMP THAT HER AND FAVE GOT ME AS A HOMECOMING PRESENT 😀
It changes colour, has a remote control with several different flashy functions and is basically everything I ever wanted a giant unicorn floor lamp to be!! Not currently named, but favouring Herval at the moment… Planning to sleep on it, so any genius name ideas please lob them at me!
EDIT: Went with Herval 😉
But back a few days, as Kath and Death Toe didn’t magically time travel from Monday and a ridiculous amount has happened since then 😛 I waited until I had actually had the magical drug before updating everyone, as I was VERY wary of getting too excited as I have seen a LOT of people in the last eight weeks being told they were going home and then the doctors changing their minds due to dodgy blood tests or BP
Tuesday I felt hideous all day – it was the last planned day of (five of) the plasma exchange; I did very little all day and k.o’d for me ridiculously early, feeling very unwell and out of it. My blood pressure was taken in the middle of the night and had dropped down to very low compared to my usual high end readings – e.g. sometimes its as high as 150/110 for me (obviously not great and why I am on A LOT OF DRUGS) but Tuesday middle of the night it was more like 100/50!! Turns out I felt so bad as my fibrinogen levels had dropped again Tuesday, so when this test flagged up from the evening and my bp was being ridiculous, I ended up getting cannulated at about 2am – it took four attempts due to my stupid veins – and had another bag of cryoprecipitate lobbed at me to fix it. I remained very woozly all day on Wednesday really, ie not very responsive when talked to and can’t really remember an awful lot of most of the day Check the bruises I took away as a momento!… MomenTOE 😀
It was bloody cold that morning as well, as for some reason the heating was off but the air con was on..??! Now it is normally VERY warm in the ward but after eight weeks in wards with older people I had adjusted to this. Waking up in a very chilly room, after a difficult night of being ill and having cannula stabbings and bags of iv drugs was horrid. My joints are flaring anyway at the moment since being off any kind of immunosuppressant, but the cold makes them a LOT worse and most of us in the room could barely move Wednesday morning. An example of how ridiculous this is, is that they were taking my blood pressure most mornings at about 6am, which necessitates taking off an arm warmer so my wristband is exposed. Unless I put this back on and tuck my arm back under the blankets, I wake up and literally cannot move that arm for a few horrible very stiff minutes… Like the whole mri incident!! I also need physically moving to sit up at this point if I am taking any medication – i.e. the nurses have to use the bed controls to raise the bed behind me more upright and/or support me moving to an upright seated position. This happened a lot! So most mornings, I always started doing my warm up wiggles then and taking paracetamol and oramorph at this point as well, so when it got to breakfast I was usually functioning at normal speed… albiet something like a crab… 😄
My feet were still humungous on Wednesday, which given I finished the methylpred on Saturday night has been bothering me a lot, as surely at some point they have to start getting smaller??? I have since been prescribed a water tablet to essentially get my body to pee out some of the retained water faster, but have also noticed that the several kg I put on in a few days (which pissed me off no end!) has almost completely gone again. So with my feet and ankles still very swollen (although better than Wednesday!) there really must have been even more over the rest of my body than I had been aware of – I guess I was focussed on the feet as they were – and remain! the most dramatic! and sodding painful 😦
On Wednesday I saw the vasculitis team again, including the consultant I was referred to after so long. He had been looking at everything and decided that it was appropriate that I start rituximab – this one being a biologic drug and my drug of choice for quite a while. His first instinct would have been cyclophosphamide as it is broader working – and without postive blood tests my mish-mash of symptoms are a bit of a vague thing to work with – but because of my age and cyclo causing infertility (as in previous posts!) the team were happy to go with trying rituximab. This was both incredibly gratefully received and very reassuring, esp when he said it was given the amount of cases he has seen over the years with no postive immunology blood results like mine that can end up responding well to it (also as known about through the support group). It can take up to three months to be working fully but apart from needing to keep me in overnight in case of a bad reaction, there was nothing further that had to be started immediately, so I was allowed home!!! I am still considered pretty ill and pretty unstable disease wise at the moment and will be back down for a review there in about three months time, but all of the blood monitoring and the second dose can be administered at home as an outpatient 😀 This was amazing timing, as Inside Friend was already planned to be coming down on Friday for a visit!
As far as I have gathered, there are two things going on: firstly a coagulation problem, so I will need warfarin (due to start shortly as it had to be arranged up here) and will probably be on this for long term. This needs very regular blood monitoring, but I can do that through my GP, who thankfully is based about 100 metres from my house and I have friends that are willing to drive me even tiny distances, because they are AWESOME. Until I start this, I am on daily injections of dalteparin as a bridging therapy – the same one they give you in hospital (see also clexane as an alternative) and I have my own sharps bin now which makes me feel like a proper druggie haha 😀
Secondly, the vasculitis disease part, which is causing inflammation to my teeny tiny blood vessels, which is what the rituximab is for. I have had it confirmed that I can start tapering down the oral pred (steroids) pretty much immediately, as my current dose is high enough to bridge for the ritux to start working and I get the impression he wasn’t convinced I’ve ever responded to pred a lot anyway. Apart from to sweat so much from my head it looks like I’ve just had a shower… Delicious. So will taper from 30mg to 10mg daily and hover there for a bit. The taper will be pretty darned fast – 2.5mg a week!! – so wi ha Long term I’ll be reviewed down at Addenbrookes maybe every six months until stable, with very regular warfarin bloods checked through GP until they stabilise as well. After the first three doses of ritux if its working I would either be classed as in remission (!) or need to have maintenance doses maybe yearly depending on how I’m doing!
More info on the drug itself – anyone who cares what I spent six to seven hours being plugged full of on Thursday and what will hopefully be crushing my B cells and slowly starting to slow down the disease… Please see link! The longer term plan is that it will put the disease into remission 😀 Rituximab Info…. I had a bit of a giggle – Fave was googling rituximab (becauses she is awesome and I love her) and noticed it has the brand name Mabthera 😀 See the Queen Mab monologue below from A Midsummer Night’s Dream! Always one of my faves… Bringer of dreams they call her – bringer of absolute tragic level floop and looking horrendously like a sick person I call her!
It is not a chemotherapy drug in the same way that the MTX was – it falls into a class called biologics – because it works in a different way, but it IS used in cancer treatment; it will hopefully be more targeted in terms of deactivating and removing the particular bit of my immune system that doesn’t function properly and not carpet bombing it entirely! It WILL leave me more open to getting infections and bugs, just not to the same extent, but if people have sneezes etc., please be considerate and stay away 😉 Working from home is already a bloody good start, as we all know how quickly a cold goes around open plan offices!! I will both be more susceptible to getting sick AND find it a lot harder to shift bugs and infections. This is maybe partly why I was kicked out of hospital asap once I’d had an overnight watch period, as I will be a lot ‘safer’ at home as it is a much more controlled environment. Hospitals – no matter how much they get cleaned every day – are riddled with sick people!!
The actual getting of the rituximab involved making the existing cannula behave for long enough to administer a load of piriton type thing and whopping syringe load of the devil that caused my giant fat feet – methylpred – to reduce the likelihood of a reaction to it. Very rare, but they still have to be careful I guess! Initially the ritux was hooked in through my cannula, but the line kept occluding and beeping and generally being a pain in the arse, so we hooked up Hendricks III and I spent a total of seven hours ish… getting that bag of goodness into me. To the point where I squeezed the last few minutes out of the bag 😀 It is sodding expensive – none of that is going in the waste!!
To celebrate the ritux I had a properly fabulous chai latte again – think I got a bit addicted!! Good thing there are none anywhere near me 😀
I also had a few more bits and bobs of post – some amazing chunky pink squishy wool that I intend to knit into a ridiculous scarf once the second mitten is finished – and some little charm dudes, one of which was a present 😉 and the other two very firmly for me hehe! I received an absolutely lovely note with the wool, as the vendor had clearly realised I was in hospital and she included some stitch markers and buttons for a little freebie!!
I am NOT being in anyway asked to promote ANYTHING in this blog – I keep meaning to add in some kind of disclaimer haha – but I believe in credit where it is due and both of the above have shops on etsy and are fab in terms of customer service and quality of the items 😀 The wool is so squishy…. SO SO squishy!!!
The toe is the remaining factor in all of this. On the day I was discharged (Friday), I saw one of the vascular team who seemed a bit surprised at the basic questions I was asking and then quickly realised HOW freaked out I was about the whole falling off (as opposed to amputation) situation. She explained that it is looking like much longer than the weeks someone else had suggested – more likely a bit into the new year, which will need to be reviewed by local GP in terms of leave off work etc. – and that although it will be very painful around the actual splitting off area, as it is at the moment, she confirmed with a series of pokes (that made me want to hurl 😀 ) that yes, the black bit is completely senseless now and the nerves are very much on their way to being dead. So it will basically shrivel and slowly get smaller and smaller and one day just sort of crumble off like a twig! Her EXACT WORDS! It is boggling my mind that this is happening to a toe that was perfectly functioning nine months ago. As previously stated, I have had to sacrifice one toe on the altar of fannying around and it can only be hoped that now I am on the rituixmab and have a team who specialise in whatever stupid type of stupidly rare stupid I have, that no more toes decide to be idiotic. Or fingers. Don’t think I would deal well with a finger falling off 😦 Speaking of, mine are all currently numb and sore and have damaged bits that aren’t healing but one in particular has decided to be very cold and dusky for weeks now so he is MAJORLY on the watch list -.- Anyway. I can’t get a shoe on EITHER foot at the moment due to the size of my giant fat oedema-fied feet and ankles, but am expecting I won’t be hobbling much more than to the kitchen or the loo for a good while anyway due to the general state of me 😀
As soon as my warfarin levels are stable enough (cross fingers please this happens quickly!) I am going up to let Mum smother me in Mum care. Until then, I can’t go up to Scotland, as I need to be getting blood tests very very regularly, need the second dose of rituximab, need the tunnel line taking out (not expecting to enjoy that!) and need some follow up appointments with rheumatology, ENT and opthalmology. Inside Friend is planning to spend a lot of time here at least initially, to make sure I don’t knacker myself out and let the rituximab do its thing and I know this has made my parents feel a LOT better. To be honest, without having to worry about work immediately, I am planning to just focus on doing very little and get my strength back. I have also asked for a physio referral as even if I can’t walk far at ALL – and look freakin hilarious when I do walk anywhere – I have also lost a huge amount of strength in the rest of me.
Once this stupid toe has fallen off I am actually DROOLING at the thought of possibly being able to swim. If the ritux works… and no more sore digital ulcers, joints and muscles that aren’t screaming… then I can maybe start swimming properly again 😀 😀 It has been a long time since I did regularly, but two years ago when I was trying to sort out my physical health and weight etc. was when I also suddenly started feeling awful and my toes and fingers started trying to die. The last time I did try with some of the girls on a planned relaxing day out, I got excited and did a few lengths at my normal whip pace and then flooped super hard and pretty much fell asleep in the pool… Decanted quite quickly to the jacuzzi on that particular day. Which is AWESOME for sore muscles, but again not so great when you have ulcerated crap dying digits.
Moment of appreciation for International No One Actually Seems To Listen To The Drs, Nurses And Ward Staff Day…. A final smidge of ward life as typed up when still incarcerated!!
This is really terribly sad because the person concerned is very upset… And I don’t have to restrict cups of tea and I can appreciate that must be tricky… BUT! How does someone who I had pegged as quite intelligent, not realise that four cups of tea so far, milk on cereal and custard count towards a fluid restriction?! A very very very serious fluid restriction that was been explained thoroughly at the point of being set in place, including very clearly that everything counted – I HEARD IT FROM THREE BEDS AWAY!! – and then checked at every single cup of tea/meal etc. so far? So the person is angry and upset that they only have half a jug of water for the rest of the day and have to take meds using that as well…
For anyone in future on a fluid restriction: I cannot imagine how tough and frustrating it must be. But don’t be surprised about cups of tea etc. counting towards it PLEASE!! – and don’t be angry at the people trying to stop your kidneys EXPLODING!! Also… IF YOU ARE TOLD TO MEASURE YOUR PEE, THIS IS VERY IMPORTANT!! “It was just a small pee” is not sufficient… *massive face-palm*
A final ranting about my nemesis as well 😀 Shame to waste so much irritation and angry-Kath to the backspace button hehe….
My nemesis has been driving me insane still – she has decided she has a horrible barking cough ‘like a giant dog’ – she basically coughed TWICE Wednesday morning and has not shut up about it since. She ended up seeing two doctors and several nurses that morning and in the retelling it has since turned into her being unable to breathe for 40 minutes and hyperventilating on the bathroom floor!!! Also she doesn’t listen to a bloody word the Drs are saying… Such as them telling her that she has been started on medication for reflux as well as stomach protectors. Earlier, after feeling queasy (very vocally and full of conversation) for a few minutes she escalated into having dramatics and saying she had felt terribly ill all morning and it was because of all of the drugs, because she had to have them without food….. Ehhhh no!! You were given your breakfast first as well as the new stomach protector dose you are being continually told about – and saying you feel queasy one minute and turning it into something like that when the woman literally opposite you is being sick quietly and continuously is sodding thoughtless.
Every now and then I feel horrible and was literally just about to label myself a massive hypocrite (as I too am prone to dramatics when e.g. my feet are still huge!) and a bitchy nasty person aaaaaaaand then just heard her calling the very patient and lovely Dr who is repeating herself many many times to try and reassure her, a ‘foreign Dr…’ – she has a VERY FAINT accent suggesting she has Indian family but there is NOTHING to indicate she isn’t British – I can’t handle it >.< [On Thursday] I just had another morning of non-stop being talked at – had laid down flat to have a ten min doze after meds and once my bed was made up – and had ‘Kate Kate Kate Kate are you ok?’ – Ehhhh I was until you woke me up! This is why curtains stay closed as much as possible – the SECOND they move back I get yapped at. It is well meant, in that she is worried because I am lying down and is concerned I am unwell… But I am in a hospital being plugged full of meds and look like a sweaty mess so yes, I am likely at somepoint to want to lie down on the bed I am hardly leaving :O SHOCK HORROR!
….It might be a race betwen us going home… 😄😄😄 And some genius has now given her a cough syrup which tastes horrible so she has something new to bitch about… Rather than be grateful that it will fix THE COUGH – and then also she has just been told she can go home this eve which is great for EVERYONE and she is instantly fretting about the pharmacist having not brought drugs yet… TEN MINUTES LATER 😀 They have to check and order and fetch and it isnt frikkin magic 😀 😀
She did get to go home Thursday evening. We had a lovely parting moment, whilst she was waiting to be discharged; seeing her having a round with some med students: she was supposed to role play as she was when she came in a few days ago so they could diagnose it and started off with ‘I came in with a urine infection’ 😂 which completely scuppered the whole point of the exercise!!!! 😄 Beautiful!!!
This arrived as a present from my oldest and Beariest buddy on Friday – so sadly the day after she went, which was probably a good thing, as I would have died trying not to use them obviously… Note also the unicorn goodness haha 😀
Aaaaaand scene! I can now hopefully go back to my excessively sugary sweet delightful self… A person who wouldn’t DREAM of bitching about a sick older lady 😄 I blame the drugs. Don’t do drugs kids! Stay in school. ‘K.
Some other very exciting news is that my replacement needles arrived after snapping one of them literally minutes after finishing mitten one… With only the fish to bubble at me I can at least knit in peace now!! I am also loving the first Harry Potter audio book – had another few chapters last night and got it on the go at the moment – as long as I put the chapter on repeat, it doesn’t matter if I doze off 😀
THE GREAT ESCAPE!!!
I will keep the finale short and sweet. Inside Friend came down a ridonkulous way to come see me – this was already planned anyway, but then once the discharge teasing started, we formulated a rescue mission plan in the event I was allowed out 😀 I spent the majority of Friday feeling like death on a stick after the methylpred/ritux wallop from Thursday. Ie sweating so much it looked like I had just showered. I felt grim… and really really grumpy!! But then the pharmacists appeared and started tallying and ordering drugs with me… and Death Toe and Hendricks III were redressed… and the vascular Dr and one of the vasculitis team came to talk through follow up care and appointments… I was all packed up with a RIDICULOUS amount of stuff and wheeled in a bit of a daze down to the discharge lounge before I really gathered my brain! I think because I was trying so hard not to get let down, I also didn’t let myself get excited! So then I was super giddy in the discharge lounge 😀
To celebrate and thank Inside Friend for rescuing me, I sorted us out dinner at the fanciest restaurant I could find and it was AWESOME – the food was all amazing and even though I had weird beige hospital socks, no shoes and looked like I had crawled out of a sewer, the staff gave us a lovely little booth and were very very nice – in a place where everyone else was dolled up and in suits! 😀 I was amused!
We got teeny tiny hot fresh loaves – see above – amazing foamy things with bits in – I can’t even describe the mouth party!! Dessert was a lemon curd and white chocolate fennel concoction… After eight weeks of hospital food it was absolute bliss 😀
The other fabulous ting was hearing properly about the art show my Fave had put on the other day, as Inside Friend had helped her with that. I am so super ridiculously proud of her!!
The above is my birthday card, which features a lot of rude words and drawings inside, so I thought it best not to share, but the cards were a new design she has brought out fairly recently and it was the first time I got to see them 😀 SHAMELESS PLUG – Fabulous arty tings! She also has a whole load more watercolour work that she has worked on very recently and I need her to UPDATE HER WEBSITE WHEN SHE HAS TEN MINUTES TO FEATURE IT ALL 😀
I spent the night in a Holiday Inn ten mins away from Addenbrookes, talking my head off and flooping mid-sentence with a very full tummy and a very happy heart. I still have a stupid amount of sweets and chocolate left. Don’t give people in hospital so much food, it is really hard to eat it all!!! Breakfast had both scrambled eggs and sausages and KETCHUP and TINY MUFFINS – I stole some which we carried in a poop bag… Then we road tripped the massively long way back up and sang and blethered and I got home to cake and MY GIANT UNICORN – a film with my faves!!- my fave dinner and loads of post and it was all flippin awesome and now it is bed time 😀
MERCUTIO: O, then I see Queen Mab hath been with you.
She is the fairies’ midwife, and she comes
In shape no bigger than an agate stone
On the forefinger of an alderman,
Drawn with a team of little atomies
Over men’s noses as they lie asleep;
Her wagon spokes made of long spinners’ legs,
The cover, of the wings of grasshoppers;
Her traces, of the smallest spider web;
Her collars, of the moonshine’s wat’ry beams;
Her whip, of cricket’s bone; the lash, of film;
Her wagoner, a small grey-coated gnat,
Not half so big as a round little worm
Pricked from the lazy finger of a maid;
Her chariot is an empty hazelnut,
Made by the joiner squirrel or old grub,
Time out o’ mind the fairies’ coachmakers.
And in this state she gallops night by night
Through lovers’ brains, and then they dream of love;
O’er courtiers’ knees, that dream on curtsies straight;
O’er lawyers’ fingers, who straight dream on fees;
O’er ladies’ lips, who straight on kisses dream,
Which oft the angry Mab with blisters plagues,
Because their breaths with sweetmeats tainted are.
Sometimes she gallops o’er a courtier’s nose,
And then dreams he of smelling out a suit;
And sometimes comes she with a tithe-pig’s tail
Tickling a parson’s nose as ‘a lies asleep,
Then dreams he of another benefice.
Sometimes she driveth o’er a soldier’s neck,
And then dreams he of cutting foreign throats,
Of breaches, ambuscadoes, Spanish blades,
Of healths five fathom deep; and then anon
Drums in his ear, at which he starts and wakes,
And being thus frighted, swears a prayer or two
And sleeps again. This is that very Mab
That plats the manes of horses in the night
And bakes the elflocks in foul sluttish hairs,
Which once untangled much misfortune bodes.
This is the hag, when maids lie on their backs,
That presses them and learns them first to bear,
Making them women of good carriage.
This is she!
Bringer of dreams…