SO! My last warbly update was very late on Thursday night, having just finished compiling an email outlining my woes to one of the admin at the charity that have been helping me so much these last few months. I have honestly never felt so disgusted in myself as when I realised how many things I have been ignoring, or letting brush over me, or being very very upset and stressed about but then not actively taking any action over. All for the sake of not ruffling anyone else’s feathers and appeasing the delicate sensibilities of doctors I have seen a few times a week in the last 25 days.
It made me feel all righteous and indignant and I woke up Friday absolutely determined to talk it through IN FULL calmly. My Dr was still off on annual leave, so when it was time for rounds I cornered the covering consultant and quite carefully (and with EYE CONTACT!) explained that I was planning to request my notes, so that I could go through and fill in any discrepancies or missing bits in my medical history. I also advised I was going to put together a letter documenting all of my concerns to go on my file – something that has been recommended to me for a while, but I had been avoiding as confrontation makes me turn to goo!! This was met with the usual ‘is that really necessary…’ type approach, to which I pointed out that yes, actually it was, as I had a ridiculous list of questions unanswered each week – some because of test delays, but as this was the end of four weeks I was feeling it was getting out of control. I also pointed out that I had no idea what was going on with the referral I had requested two weeks earlier and if it had even been made as an official referral request. He was understanding and said that I obviously had to do what I needed but was worried that it was about the care I felt I had received. Now I have said repeatedly how lovely all of the ward staff are and it ISN’T any personal dislike or mistrust in my Dr at all. Its that I have a stupidly hard to diagnose condition that as far as I can understand, accepted practice would have been to refer to a specialist clinic by now, and that I was continuing to get worse. I basically came in with a diagnosis, a treatment plan and a toe. Now four weeks later, I have no diagnosis, no treatment plan and no toe – BUT! I do have an infection. Woopee.
That was emotionally exhausting. So I then had an MRA (to get a lot of detail of all of the blood vessels from my waist down) and passed out for probably over 30 mins in there asleep – no mean feat when the machines are SO noisy, but it was easier to sleep with continuous noise of the same kind than on the ward where alarms are going off, then someone is talking to you, then a thermometer is in your ear… I actually love MRI machines!! I also for the first time got thrown one of those cool stylish gown doo-dahs as below and found it so amusing and weirdly liberating, I wore it for the rest of the day!! Makes a change from the same two skirts and two pj bottoms alternated for four weeks 😀 I look sadder than I was. I was actually dead chuffed with it 😉
Had a dressing change then. No further necrosis spread… Very painful though and my Granny arrived at the same time so I had to kick her to the Day Room so she didn’t get upset 😀 My nurse friend arrived with clean washing on a two second lunch time fly past and ended up holding my hand and distracting me. She is very awesome and also brought me a tub of homemade apple crumble. As an example of how awesome she is, this is the picture she brought me in, instead of a card:
His name is… (Had to write it down…) Psychedelic-space-rainbow-poptart-eating-pussy, but I’ve been calling him Psy Tart for short 😀
Granny was allowed back in after the dressing change, but by the end of Friday I was utterly pooped and spent the rest of the evening productively holding a ‘name the new baby Death Toe’ competition (see previous post for a pic!), which I think many people were shocked at how much time they invested into it 😀
I was getting a lot of giggles from this but decided it needed to be called at midday on Saturday. The fave submissions were as below:
Anakin (going to the dark side) – Vader for once ulcered and gone too far to be cute any more…
Antoenius // Toenee
Death Toe Jnr… Jnr for everyday
The Toe That Shall Not Be Named (TTTSNBN for every day)
Settled with some help (thanks helper!) on The Toe That Shall Not Be Named – Voldetoe for every day Mainly as I am a dweeb and quite liked the acronym TTTSNBN… It isn’t every day you get to name an ischaemic toe, so I would hope that everyone who took part appreciated the very real gravity of the task. My thanks for the entertaining and truly toeribble submissions 😉
The very exciting part of Saturday was a very sudden and unexpected confirmation that I was moving ward – with the iloprost finished, I wasn’t medically exciting enough to take up a bed on such a highly staffed and high intensity ward, so I am now living since yesterday afternoon downstairs in Gynae 😀 Just happens to be the easiest place to send spare ladies as they usually are not AS busy apparently and can still do all of the checks. Packing up and saying goodbye was a bit mad – and I am really really going to miss some of those women, especially the heavily featured M and J… and my next door neighbour who is just an amazingly feisty lady… and being so lame it will be very hard to be able to see my great great auntie, unless her daughter can wheel me up on her way to visit! The staff were also consistently lovely and tolerated me for four whole weeks of being a chatterbox and a complete question pest, who had a tendency to cry a lot, needed a lot of cannulas and wandered around a lot more than anyone else. They all have my thanks for talking to me and making me feel less alone and freaked 🙂
Having said all of this, being wheeled on Gynae ward was like entering heaven!! I can’t describe it other than to say I keep feeling like the walls actually glow with a soft white light – and that is even in my less drugged up moments! I am in a little four bed room, which is now full but still has so much space… Everyone is completely sane, two of the current occupants are my age or younger… Within a few minutes of talking to me I had a nurse saying she would research cryo as she had never heard of it!!!! – having since come back for a chat about it, which is completely mind-blowing when you have (probably?) a stupidly rare type of a rare disease!! It is also so very quiet. Alarms hardly ever go off, no one is singing madly or screaming every two hours and I am not being asked to call the police urgently or being told of various ongoing nefarious plots each time I ask the wrong question!
Let us just all take a moment to enjoy the below. I love the internet.
By Saturday evening I was on a bit of a high (a happiness high…) once I realised no alarm bells would be going off every two seconds and that there was so much SPACE – not that I get much walking around done, but it is there if I need it and that feels amazing 😀 I for some reason decided I needed a religious order of some sort to become a member of and the conversation somehow escalated into a religious war with my fave over the fact we have differing opinions on mini cheddars… She was preparing ships in the dock and locking up her dog who also liked mini cheddars (she has since been released, but with an ankle cuff monitoring device thingy), whereas I was furiously stockpiling NHS yellow handled scissors and micropore. We agreed to a pause in proceedings whilst we sort out our separate belief systems, partly as she was visiting me today (Sunday) and we were both possibly feeling it might be awkward if we were on opposite sides of warring factions I spent the evening settling in, getting to know the new ward staff and the lass opposite (who is UNDER 30 :O ) and knitted a bit more of Weenie. He still doesn’t have the back of his legs, but other than that is looking promising! Maybe not when I said he would be a 24 hour job, but I am on a LOT of drugs (I reckon it is getting near the 40 pills in a day point now, plus still four bags of iv benzyl penicillin each 24 hours at the moment… QUITE ridiculous!) and I would urge anyone now to not take any time commitments I make for anything seriously right now 😉 I had some fabby visitors all day as well and got some proper lovely catch up chats with family I haven’t seen for a while 🙂
Sunday has been… Good. Emotionally and physically knackering, but overall I am chuffed with it. I slept like a log last night – maybe as much as eight or nine hours in three chunks? I had a very good day Saturday pain wise and this probably helped, along with the amazing peace and tranquillity! I spent the morning girding my loins and circling the wagons (woefully under-used phrases!) and began putting together an epic. I had already sent an email yesterday to the Patient Advice Liaison Service (?) – PALS! – asking how to formally request my notes, to avoid any misunderstandings or delays. So the next step was preparing the letter to my Dr documenting all of my ongoing concerns and questions, specifying that a copy go into my notes and that the answers were then documented as well following the conversations on each point. This has taken me basically all day. I once again cannot even begin to describe how much Vasculitis UK admin helped with this. On a Sunday, without any notice and with a family meal to attend this evening. The particular lady in question spent the whole day offering oodles of phrasing advice, encouragement and in the end also checking my first draft for me. Massive gratitude from me! All volunteer based so anyone who can spare a few quid please please please consider a donation. They have helped keep me together (along with all of the micropore and morphine 😉 )
I took a break for a nutritious roast dinner with FUCKING SPROUTS AS THE VEGETABLE OF THE DAY which is actually worse than cabbage, and then had some awesome visitor time…
My fave and her laddie walked in on me having a happy cry at an amazing behind the scenes vid one of my friends had made me at the last gig I missed – I was dribbling 😀 and then I got the most WONDERFUL present (as well as a huge bag of sweeties…) in the form of my very own fluffy pompom hat to make up for the fact she won’t let me steal hers in case it is irreversibly stretched by my epically thick haired noodle!
I am going to wear it forever and sleep in it and tings.
I had my final draft proof read by my fave’s Paw (a wonderful egg!) and printed off by the Sister for me and a copy put straight into my notes so I couldn’t chicken out 😀 It basically is the most assertive, ballsy, un-Kath like thing I have ever written personally addressed to anyone. I have highlighted each of the areas I have unanswered questions or concerns from the past four weeks (also covering a few issues stemming from the beginning of my treatment) and although saying I was sorry that I felt I had to word something so strongly, I would like think I have made it pretty clear that although I am lacking in the confidence to boldly discuss these things face to face, I am absolutely terrified of where this ends. I am losing one toe and don’t have much say in the matter. I have no diagnosis… There are constantly outstanding results or delayed tests, which according to every source outside of the hospital should be being rushed as urgent, given that I have further digits showing critical ischaemia as well as the one toe beyond saving…
The condition I probably have (cryo) and the position it is at is limb threatening. This isn’t funny. I can be sweet and amenable and polite, or collapse bawling in pain and an opioid fug, but at the end of the day four weeks and nothing further (and don’t get me started on the mystery of the referral!) is not good enough. It is probably the most calmly angry I have been on my own behalf ever. When I was bullied very badly as a young kid for a full year, I internalised a lot of it and it kept eeking out ever since as various forms of depression, but also seems to have left me incapable of standing up for myself. I am going to have to keep working on it, but the last few days have been a breakthrough for me! At the end of the day, if she is angry at me or offended, she needs to think how she would feel. I have made it clear that it isn’t personal and that I want shared care to continue with Addenbrookes… and – well. She could yell at me and make me cry, but my letter is already on my note now and she can’t undo that. Worst case I have a stash of smarties, micropore and knitting needles… I can also set up a blanket fort in about five minutes flat. Bring it 😀
Not so much a happy note to end on, but maybe an amusing one… It is at LEAST two years now since I saw myself starkers in a full length mirror. There was the usual “eeeeeshh…” directed at both the fact that although I am losing weight in here, I am not exactly toned and slender… 😀 and I am also completely covered in cannula and clexane injection bruises, as well as having the deranged eyes of someone who has lived in hospital for four weeks 😀 There was also then the absolute shock at how widespread the ischaemic mottling is on me. I am used to telling people casually that it covers me all over – and was aware this was the case, but I am a complete patchwork of weird wiggly lilac splotches and bruise like patterns, on every limb, all over my stomach and my back… I have spent so much attention worrying about my hands and feet that I hadn’t actually thought to be concerned about how weird the rest of me looks 😀
Ok in fact, I do have a happy note. My two baby brothers are currently travelling together for quite a chunk of time and I got the below picture of them before and again had a happy-they-are-happy/sad-‘cos-I-miss-them cry at how healthy and happy they look, the fact they are spending the most amazing quality experience together and are LOVING it… I also then got a ten min video chat with them as well this eve which was so fab 😀 At the risk of being gooey and emotional, I have an awesome family and I really love my bros 🙂