THE PACKAGE – FRIDAY!
So! Apologies for taking so long – life has been pretty chaotic since the last post, as I am quite sure everyone appreciates 😉 I have actually seriously missed updating the blog – it was a massive pain distraction and stress release for over six weeks, so being unable to properly sit down and just spend some quality time with my laptop has been driving me insane 😀
Thursday night was spent packing in a giddy delerium and then carefully not committing murder, as I figured it would ruin the epic jail break if the place was overrun with the police for Friday morning…
Friday morning I had slept very little thanks to Mrs Meaty Sniff and had my stuff lying all over the place! My convo with my Dr on Thursday re the discharge was literally half an hour after Mum had phoned me – she came around the curtain and I got in first with “I have some wonderful news!” and a huge grin – to which she said she knew, the desk had had a call already from Addenbrookes and…. something along the lines of the referral had been sent as we had discussed [she was referring to Wednesday when I INSISTED on her faxing an updated specifying that this was to be an inpatient referral]. Now given that since at least mid-October I had thought that what I was requesting, I very carefully didn’t listen to anything but the important bit which was about my drugs! I would be discharged with all my own stuff I had brought in, plus enough pain relief to keep me going for at least 24 hours – she went to get this sorted for me and I didn’t actually get to see her again as I was too busy with the weird eye exam business!
Mum showed up super early at 7am – both of us were very giggly and I was treating it as a proper jailbreak – we loaded everything on top of me on one of those tragic porter wheelchairs…. AND THEN! I got to leave 😀 😀 😀 I got to witness my new disabled parking badge having its first use ever as well, which was a fun bonus moment. It was absolutely leathering it down, so I had to stick-hop into the car – then despite Mum having driven down from Scotland late the night before, we just hit the road and got cracking. I then spent the next… 48 hours at least, being referred to as ‘the package’ by my Aunties 😀 E.g. – “Have you collected the package….?”
I had had all of my morning meds with a jammy roll super early before leaving and pain wise managed the journey a LOT better than either Mum or I had anticipated. I think being on a complete adrenaline jailbreak high helped hehe – also it is so so rare I get a car journey with Mum, so I made the best of it and talked her ears off pretty much the entire way 😀 This was interspersed with me crashing out very suddenly for ten minutes a few times – classic autoimmune floop – but wiggling my foot around was enough to stop too much pain 🙂 She had loaded the car up with blankets etc. and I can confirm that a sleeping bag doubled up and wrapped around your shoulders is the BEST passenger comfort aid you can imagine! If she hadn’t already won all of the Mum points, she would have got a special mention for that bit of clever advance planning.
The A1 was a nightmare – as far as I could tell, everyone wishes it was a motorway and it blatantly isn’t… It also had a LOT of roadworks and EFFING TRACTORS causing mad panic and sharp breaking from the idiots in front of us. I can confirm is very painful when you have a Death Toe and all of the blood is suddenly flung forwards against the Death Toe/Kath boundary – we were both squirming at the thought of it suddenly popping off in my sock midst traffic jam, which is about the closest I can come to describing what it felt like was happening! We stopped ONCE for food, pain meds and a stretch… HARD AS NAILS. It was still very rainy, so I used my shower sock to hop around in and probably looked very amusing….
SIDE NOTE – [Typed this up in several chunks over Sunday to Tuesday…. So this would have been Monday night, late] Just had the LOUDEST and LONGEST single snore ever from one of the women over the room 😀 I am squeaking back giggles!!
When Mum had made her major phone plan with the vasculitis ladies at Addenbrookes, they had basically told her to get me there for the outpatient clinic and they would see me asap, with notes all over the appointment saying not to cancel it if we were late! We got there with some serious reliance on the sat nav and FYI the whole area looks like it is being rebuilt! Some insane level of building works got in the way but then we found the right car park…. Bear in mind at this point I was still determinedly not getting too excited as I was TERRIFIED that Mum had the wrong end of the stick (despite her continual calm reassurances – six weeks in limbo, with it being implied I wasn’t exciting enough to refer has seriously knocked my confidence in my legitimacy as a sicky!) and that they wanted me down for just an outpatient appointment and weren’t ever planning to admit me Still, the level of adrenaline in the car was extreme!! Once again my new ‘super powers involve slowly kiling herself’ badge proved itself to be pretty flippin amazeballs; we got parked VERY close to the door and Momma grabbed me a wheelchair and we entered…
THE PROMISED LAND 😀 Friday afternoon, Saturday, Sunday…
Mum had a particular ward scribbled on a bit of paper so she whisked me straight off in a very determined kind of way – she is getting pretty good at wheelchairing!! This place is HUGE by the way – going past all sorts of fancy murals and shops – THERE IS AN M&S FOOD SHOP AND A BODY SHOP, JUST SAYING – and we found the right place and I was very quickly being introduced to the actual vasculitis team I have heard so much about from so many people for months 🙂 Several of them at least stuck their noses in to say hello, reinforcing my suspicions that there has been quite a lot of background name dropping of Death Toe and his plight 😉 It was funny seeing Mum realising that something else had been going on in the background as well – someone let slip Death Toe for example before I had used the name 😀
I went through a rough history of symptoms, how it all began, what had happened so far in terms of treatment and summarised the last six weeks of my life sitting on a hospital bed. It was nice having Mum there actually, she had been to one Dr appoinment previously with me that I remember, and given the last few weeks it felt good to give her a bit of ownership as well over the whole stupid disease business. I was on a massive adrenaline buzz and was also still absolutely shell-shocked by the wording of the referral fax, so found myself feeling really defensive and panicked that they would kick me out… They were so incredibly fabulous!!! Within literally an hour of arriving I had had EVERY blood test ever taken repeated – with a CRYO FLASK making a casual appearance waiting for the sample to be plonked in… Yes, you read that one correctly. A cryo FLASK!! :O
Spoiler alert – that test is already back and was negative, but cryoglobulins have been checked again today (Monday) before any level of PEX is started, as that would obviously remove the sticky little bad dudes and make any future testing largely pointless!!!
They also had a very basic admire of his Majesty and agreed that he was not only gross but that it was quite likely the case that auto-amputation would be the best route 😦 This still makes me sad, but it is easier to swallow when the same discussion involves the list of tests that will be done and other specialists who will be having a poke at me… I was given a bed in a shared ward and it was at this point I think I started to breathe properly!
Once Mum went to go check into a nearby hotel, I got a bit settled in and introduced myself to some of the other ladies… Then looked at my phone… The sheer number of messages of encouragement and support for Mum’s epic jailbreak has been incredible – both from friends and family, through facebook and then through the closed Vasculitis UK support group! This has meant a lot to me (obviously!) but to my family and friends as well, to know how much love and support I am receiving – I really don’t feel worthy and am just going to try and make it turn me into a nicer person and pay it back/pay it forwards somehow in as many ways as I can find 😛 My particular fave message moment came on Friday, and was the Birthday Girl calling me a lovely magic unicorny glitter pump! 😀 Big smiles in the car at that one on the journey down 😉
One of the weird fun bits of getting settled in was – after all of the pharmacy shenanigans and clerking in – hearing that I was getting to self-administer my own medication!! For the first time I was offered the chance to inject myself with dalteparin, the Addenbrookes version of the anticoagulant you get injected with every evening to stop bed sores etc. due to shite mobility in hospitals! I absolutely bossed it, genuinely didn’t feel a thing… Have continued to do so since that first one 😉
On the Friday night, I was knackered and thought I would conk straight out, but one of the women in the room was in a lot of pain and crying on the phone for hours in the middle of the night. Unsurprisingly this made it hard to sleep, so I woke up pretty shattered still… BUT!
THEY DO TOAST HERE 😀 IT HAD BEEN OVER SIX WEEKS SINCE I HAD HAD A SLICE OF TOAST!!!!!! To confirm, toast. For breakfast. Had missed it.
I started Saturday off with a massively lame project (after toast… and a shower, I’m not THAT sad!) and made the world’s saddest excel spreadsheet (the below is a rough initial version!) – it is exceptionally dweeby but feels like a nice bit of control again. I went from having control over my own drugs for 18 months – getting prescriptions and dishing them up each morning was part of my routine – and then all of a sudden for six weeks have not had any control over them, not writing down when I take painkillers etc. I am a totally pedantic control freak, especially thanks to the meth making me distrust my own short term memory, so maybe not so surprisingly I had actually missed such simple things 😀 (yes, my spreadsheet has already been admired and giggled at). I was also immediately skipping around helping the other ladies retrieve dropped stuff under bed etc., crawling around on the floor is good exercise – basically my ONLY exercise!! – it is once again amusing me how ridiculously flexible and hypermobile my joints are one moment and yet I wake up and literally cannot move for a while – still having major claw hands in the mornings 😦
Mum spent all Saturday with me and we had a bloody good wheelchair mission around the shop area – found where everything is and got my hair cut!! Has been a bit overdue and all of these older ladies like it to be a billion degrees in the wards, which doesn’t go well with six tonnes of thick curly hair on the back of your neck, when you are already on drugs that make you sweat like a roasting piggy!! I would like to take a two second moment to acknowledge the existence of the below – I am testing how far I can walk soon and will buy some and see if they are as good as the Yorkshire brand ones…. MMMMM!
As well as hair chop, lunch and a few little sneaky bits and bobs, Mum also left me with some awesome pj pants, fluffy socks and a christmassy coloured woolly wrap of the sort that ladies wear… very spoiled! Below does demonstrate a) my new fave ‘hair off neck trick as massively warm in here’ b) new much shorter and thinned out hair and c) my sleepy love for my new pjs…
Saturday afernoon/night I was definitely dealing with what may have been delayed shock from the jailbreak and change in scenery – I felt pretty awful physically in terms of normal unwellness, not the usual autoimmune type crap… I’ll be honest I still now feel absolutely buggered, so am finding it hard really to think what is due to the tests, new routine, condition flare… Everything?!
Although so tired, I wanted to fully clear my mind, as it kept angrily chewing over that referral fax. I had a paper copy so emailed PALS with a photo of it also attached, to ask that they put copy of the letter sent 6.11.16 into my notes HERE, as it quite clearly contradicts quite a few of the points in the referral AND makes it pretty bloody clear that I was requesting this referral for a long time. So so many things on that referral have majorly ground my gear – especially when looked at in conjunction with my letter >.<
Saturday was also one of those nights I had to question whether or not I was a nice person any more. Phone Call Woman was going for it again for night two in a row. To understand this, imagine a person who mostly had a lot of visitors around all day, variously in a lot of pain and upset. Then think everyone else is asleep, I have my curtains round and music in earphones, sitting plinking away at laptop and then the phone calls started at 11.30pm and continuing until 2.30am, with a lot of crying and arguing, all conducted at totally normal volume without any indication she was aware she was in a room with six sleeping elderly ill women and one pissed off younger ill woman… I posted the below at 2.20am approx. Sunday morning on facebook and then had made it private, thinking it was actually a bit mean… but with hindsight, being in pain does not excuse you being a selfish bitch!
IF YOU HAVE ENOUGH DUCKING BREATH TO BE ON THE PHONE FOR OVER 3 HOURS, STILL TALKING CONTINUOUSLY AND WHINING YOUR ASS OFF AT 2.15AM, THEN THE PAIN IS NOT “TAKING [YOUR] BREATH AWAY…” *YOU* ARE TAKING YOUR BREATH AWAY. SHUT. THE. DUCK. UP.
I have found the standard approach to privacy slightly different down here – no one has in any way stopped me doing so, but apparently having the curtains closed isn’t brilliant as it cuts off visibility of the other beds from the door. I explained why I wanted to do this for the evening and night time along the lines of having been in hospital now for six weeks at least, so closing them at night time is literally the only illusion of privacy I get, except for when I am in the loo or showering. Even when my curtains are closed, I am fully aware nurses will come in and out with a few seconds warning to take blood pressure etc… Privacy isn’t really a thing in hospitals
Again – a quick aside – the FOOD! The food is nicer 😀 No one has tried to feed me cabbage in so many days – the below may not apparently look good (as per popular facebook opinion!) but it was tasty and had three identitifiable NON CABBAGE veggies! Lunch today was a tuna baked potato with a lot of fresh mixed salad and there was a LOT of tuna mayo and extra salad cream – literally would not have made it any differently for myself 😀 Much much more emphasis on the menu on veg options and also lighter evening meals available 🙂 still all coming with regular cups of tea 😉 Yes, it isn’t perfect, but I am being fed three times a day and looked after very well indeed, which given how feeble I am right now is very much appreciated!
I had said bye to mum Sat night and then she dropped in again on Sunday morning to give me another hug goodbye – we managed all of this without tears and as crude a saying as it is, I really feel like (hope that!) SHE feels like she has been able to firmly grab her Mum-balls back – I have a lot of anger towards my Dr for making my Mum feel so upset and powerless for that time, but then she took action and sorted all of this out in one fabulous morning! Sunday was remarkable for getting the internet sorted for my laptop!! I had been getting excited looking into dongle/dingle/dangles and then my parents dropped the bombshell that you can actually just connect with usb or bluetooth and use my mobile connection 😀 Getting that sorted made me feel better almost instantly – partly sitting properly at ‘my desk’ (hospital table with laptop set up) makes me sit properly instead of being shhhlumped on my bed! It also means I can type until late at night, which is definitely the best pain distraction for me 🙂 I had also been missing updating this blog – there is so much going on, it is only by getting it down in writing that it feels like it is stored safely outside of my untrustworthy short term memory and autoimmune addled brain! I made a bit more of an effort on Sunday to lay down some ground rules with my fellow ward mates regarding me needing some time and I think it worked, in terms of them all taking a slightly different stance 🙂 It is lovely but also slightly amusing – instead of now having me as someone to use for talking to, I have about five women worrying about me getting enough sleep and telling me off if I spend too long talking to one of the other women 😀 Its like suddenly gaining a whole room of protective aunties in one evening! Phone Woman had another belter of a night on Sunday for example and Monday morning they weren’t bothered for themselves, but were all outraged at the fact that she had kept ME awake all night again!
MONDAY FUNDAY & TUESDAY BRUISEDAY
I had a super early shower on Monday, being rather awake after another upsetting phone call night and this was a very wise move as I was then pinged down very promptly to get a tunnel line fitted in the vascular access unit – I think by the renal team?! I appear to have been on their list for lines that morning 😀 The whole thing was quite un-scary as I had JUST had my morning painkillers when I was wheelchaired away, so I dealt with the whole operation with an oramorph hazed cheeriness and downright nosey level of asking questions and keeping up a running commentary throughout 😀 I like to think I maybe made their day a bit more amusing 😉
Forgive the blood – he got a little oozy and has since been spruced up with a new dressing. I’d say forgive the eye bags but I’m actually quite proud of how close I’m getting to Puss in Boots from Shrek eyes in the first pic. I say he… He has bee dubbed Hedricks III by a friend of mine at stupid o’clock last night. I am sure he will serve me faithfully! This line is basically for plasma exchange and has an in-chucker and an out-sucker, with the line going in under the skin some way – ‘tunnelling’ under the surface – before going into one of the big veins closer to me hearty! This is to help keep it firmly in place and lower chance of infection, but the main point of one of these is that it can stay in place for weeks or months for plasma exchange, chemo drugs etc. and will prevent me needing billions of cannulas!
Re the plasma exchange, this is planned at some point, but no one is willing to commit to a date just yet, as the second they have started cleaning my plasma of whatever nasty little proteins are in there (Cryos being one of the suspects, but by no means the only thing that could be doing damage!), they can no longer reliably get a positive blood test out of me! I have already had… by this point late on Tuesday, the full blood works done at least three times and two cryo tests done since Thursday. One came back negative already, but with it being a notoriously difficult test, it appears they are happy to take several samples as standard practice over a few days and give it a proper chance to come back postive. It is still – I think – the fave diagnosis, but another deeper biopsy is also planned for looking at options such as CPAN from… somewhere… Do ya think you can designate your least favourite chunk of thigh or ass? 😀
Then needed a cannula wanging in for the standard post tunnel line antibiotics dose – TWO hour drip?! Still got the cannula in for easy access, but getting that in, it was confirmed that my veins are indeed now very battered from too many cannulas and tests – hence the tunnel line being a sparkling idea 😉
I got back after being off the ward anyway to hear that Phone Woman was moved in the early afternoon to another bay that was more appropriate for her medical needs. I do genuinely hope she gets some more sleep herself – I was struggling to work out when she was managing as she had visitors all day every day. The visiting hours are one very surprising difference – there is an amusing two hour protected time midday when the lights are fully turned off and the door locked – its like an enforced siesta and now that there will be NO MORE PHONE CALLS 😀 I am actually planning to use it!! Apart from those two hours though, it is basically a free for all, which is also quite tiring as the level of bacground noise remains quite high – there are a lot of devoted husbands in particular in attendance for many hours daily!
Monday night I was feeling super happy – so much stuff got done – I had been nervous about the line as well after hearing it being called “invasive” for months, but it wasn’t all that traumatic really 🙂 Less so as well it is for a bloody useful reason!! I woke up on a proper chirpy high after sleeping really well – at least six straight hours! – and once again got whisked away super quick for exciting things! I had an ultrasound done of Death Toe leg checking again for large or medium vessel involvement – was pretty sleepy and the soft ultrasound noises had me almost conked out a few times!! Nothing obvious that I am aware of… I am sure I would know by now if any clots had appeared!
Then was back on the ward for very little time and was taken for a mri! I think this is my fifth this year maybe?? This one was of my aorta – I mean I don’t generally get overly surprised by tests, but I am very aware that the aorta is NOT a small vessel… Possibly checking for something like TAK?! I suppose a lot of the more recent things like eyesight being blurry etc are either drug side effects or condition related and were not around when the original list of suspects was being drawn up… Will ask tomorrow!! I do bloody love a good mri – fell asleep properly a few times in this one for little micro naps and had to keep breathing in and out and then holding the breath out… It got very confusing when I was so completely out of it. Death Toe also started to kick off – see further down, this was understood later on, but at the time I was just worrying they would think I was scared of the mri or that it would give misleading results if my pulse was up due to pain 😀 I came out apologising profusely for his behaviour and confirming how much I loved mri’s which they found very amusing. The bad side was, I had to lie with arms above my head and although I had my long arm warmer mittens on, my hands and arms in particular stiffened up very very badly whilst I was in there. When I was rolled back on the table to come out, I literally couldn’t move my arms – a mix of pain and stiffness and also just absolutely wiped out! I had to have two of the mri nurses move my arms into. normal position and then very slowly help me sit up. Morning claw hands and stiffness have been getting worse – I think I am generally having a pretty whopping flare at the moment! I was so bloody tired this afternoon after all of this testing, I was basically falling asleep mid-phone call with both friends and Mum – oops!
Ooooo Death Toe had a proper photoshoot 😀 A very nice lady from dermatology came and we spruced him up and got a fancy flash camera on the go and took many many pics… The ladies were curious as hell afterwards, as all they knew was that flash photography was taking place behind my closed curtain 😀 This did mean he needed a new dressing afterwards – again see below re oramorph >.< and it was epically sore – even the time waiting for the dressing to be set up etc was stunningly ouch – the cold in particular seems to have been bothering me today Dressing should be able to stay on for a few days now though, unless anyone wants a peek! As far as I know now, possibly starting plasma exchange – hereafter PEX – and getting a chunky biopsy at some stage…. Also waiting for some definitive cryo result decision and as far a I know, still very excruiciatingly ANCA negative 😦 Being rare is very annoying when it comes to diseases!!
We all like a little Tuesday ward giggle 😉 Had two of the ladies earlier discussing how annoying it was when one of them keeps having new things added to the list of things wrong with her… She had sensors on to measure her heart rhythm and had some med students observing and doing the practical side of the exam… One of them was apparently a “very handsome young man” – cannot verify this as didn’t see!! – and these med students were gettng very worried as her pulse picked up and did little skippy things when he was leaning over her hahaha 😀
To end on a partially serious note, a friend drew my attention to the below online survey. There is an information sheet available straight away and it is designed for “women with autoimmune rheumatic diseases who are aged between 18 and 49 years who currently live in the UK” – when you read the sheet, they basically want women with a chronic illness, such as vasculitis, who are thinking about trying for a baby in the next 5 years, are currently pregnant, have been pregnant in the last 5 years, and/or have a child (or children) aged 5 or younger… I think that covers quite a lot in that age group!!
Basically, even if you are male or in no way fancy doing the survey or think it relates to you, please take a few moments to have a think about the overlap between a chronic illness and family planning at all stages: as it relates to physical disability, delay in getting a diagnosis, all of the horrendous associated mental health problems, work/threat of losing your job, serious serious drugs, having to a plan years ahead and risk losing remission in weaning off drugs to start a family… the prospect of treatment potentially stretching on for the rest of your life ahead of you…. all these things massively impact women with a chronic illness ANYWAY, but have different and all too often undiscussed implications when it comes to wanting, planning or having kids, even if not day to day then in a silent hovering sort of way.
I have shared things like this before, but the point of doing so is that it is only by collecting responses from those directly impacted that health care providers at all levels can improve the information and services they offer. This survey covers the topic very well to my mind, giving me a chance to mention for example, that I was terrified of being started on cyclophosphamide without having explored all other appropriate options carefully as it has a tendancy to cause irreversible loss of fertility… Not what you want when you are about to turn 28 and have yet to pop a sprog!
This happens to be a particularly current stress of mine, as I had to read a referral letter claiming that I remain “very reluctant to even discuss Cyclophosphamide as a treatment option unless it is proven that [I need] it” – no shit Sherlock!!! Is that not a normal stance for a potentially life altering toxic drug, when no one had given me a diagnosis or a treatment plan?! I had a beautiful moment when very first checking in to the vasculitis clinic and it was raised as part of a general discussions with Mum and the team and they all quite clearly confirmed that they didn’t think I was insane for having that stance. It made me happy that Mum heard this as well, as it has been something I have found so hard to talk about with her – we did have a fleeting blether in the car, but until it becomes an immediate issue, for this and other drugs, I am just trying to remain calm!! But… Hakuna Matata!!! I am out of there. I am in the promised land… I am in a happy mood. I am spending WAY too much money on myself and there are going to be SO many bits of post coming my way… Which I intend to blame on other people sending to me for birthday presents, but lets be honest, 90% of it is going to be me haha 😀
Whilst finishing off this, the longest, latest update in history, with the earlier level of tests and things that happened today meant I FORGOT to take any oramorph since midday and bloody hellfire I could tell… See above comments added in about general levels of ouch haha!! It was maybe about 8 hours since I had had any and I’m usually taking it every 4-6 hours now we (Death Toe and I) are at such a wiggly point, a smaller or higher dose depending how I am doing…. I was at the rocking and whimpery noise stage >.< Some was delivered and helped pretty quickly – Death Toe is being a git, but then he has had a lot of testing things AND a dressing change with a period of prolonged exposure today… Maybe I should excuse him an evening being a git? Just also been given some transdermal patch thing called NITRO-DUR today 😀 What a name!! Goes on lower shin/foot in line with Death Toe and may possible widen up the constricted blood vessels by relaxing them… We shall see if it helps with the ischaemic pain!!
Ending on a nice little summary of life from one of the Vasculitis UK admin – wonderful woman, can highly recommend for a phone meltdown 😀 “You have a chronic, remitting, relapsing disease, it’s a lot to get your head around. What you are feeling is natural, essentially you are grieving for the life you had before” – she just nailed it!
Happy moment – making me smile every time I see one – there are bins here that are clearly marked as being for ‘non infectious offensive waste’ 😀 WHAT A CRACKING PHRASE!!
Anyone who feels like it, please cross toes for Hurricane Otto remaining non-eventful as one of my brothers has managed to be in the middle of it somehow!!