I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀
I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.
The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.
This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]
Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.
Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!
I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉
*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****
As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.
Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.
Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!
I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.
Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.