So last post I was expecting to maybe be allowed to go home for a bit… That then got delayed a smidge, as I had a pretty bad weekend. I had a biopsy taken on the 9th, the day after the amputation and it hardly hurt at all to begin with and I was feeling pretty smug… and then it started to hurt like crap and get pretty bruised and inflamed. I’d share a picture, but that zoomed in, its pretty icky seeing my hip haha 😀 Weird, I can deal with the actual wound no problemo, but seeing my skin that close up grosses me out for some reason. Maybe I just have really gross flesh? Any ex-boyfriends care to weigh in?? I AM expecting to have a fairly exceptional scar, as it is a good 5cm long slice with quite a few stitches along it! If it were to heal without being fabulous, I think I will feel rather cheated. The bugger has been more painful than The Gap! More stitches… Easier place for me to pull them… So understandable, but I would have assumed an amputated digit would be more sore than having a chunk scooped out of you
Anyway, massive tangent there. I was feeling naff and what I was vaguely describing to ward staff and Docs as ‘infectedy’ so they gave me a few more days of observation until I was perked up again. It could very well have been all of the drugs from anaesthetic and chemo etc. still in my system walloping me; by Tuesday, my bloods were looking rather fabulous (although white count etc. royally flattened post chemo) and I got the all clear to go home Wednesday 😀 My appetite had come back as well, so I was managing to eat actual normal (some would say excessive) amounts of food again and blood pressure started behaving again… Although a single coffee managed to knock it from approx. 130/85 to 165/110!!! No coffee for me for a while then 😉 Mum did her SuperMum act again and came down to get me (so much driving!!!) and we road-tripped back up and I got to see my special little friend Mog again 😉 She cried she was so happy to see me. (She actually did, but probably because she was hungry).
Home meant checking still temp registered at local GP as being on warfarin now means very regular blood tests (three times a week until stabilised) to check how dodgy my blood is. The thought is currently that I have a coagulation problem as well as what is being dubbed livedoid vasculitis of some description. That in itself isn’t technically a diagnosis, it is more a description of what is going on with me. A bit of casual research reading medical papers and journal articles etc. (as I am prone to doing sometimes… Uni left me with serious dweeby research tendancies!) has resulted in me deciding I have the most mottled purple zebra markings in the universe. Of all the people in the world saying they have livedo reticularis (the fancy name for the mottling I get) no one has it quite so fantastically as I do 😀 Maybe shouldn’t be feeling smug about it, but it does explain why all of the Docs were calling me medically interesting (I laughed, said “you mean weird” and no one corrected me…) and one of the junior Docs came to see ‘me’ *my mottled skin* and said she had printed off some articles about it, which is always nice as it shows she still has curiosity about things she hasn’t encountered before 😀 The warfarin is GOING TO WORK anyway, so it is likely I won’t have quite so exciting mottling in future and it should also hopefully mean that my blood is thin enough to get down to my toes and fingers a little more effectively… So they will STOP GETTING ISCHAEMIC and therefore STOP TRYING TO DIE. Fester, Voldetoe… Stupid Finger… Are you listening??? I had an INR test on Friday anyway and by Friday afternoon everyone had had a chat and I got my next few doses, so the system worked 😉
Hmm… This is a largely cat based blog post haha – I have spent a very large chunk of time whilst at home feeling twitchy because I hadn’t updated this blog for a few days, reading (on the last of the Daughter of Smoke and Bone Trilogy – AWESOME!!) and talking to Mog.
Other Mog activities include apologising to her because I am not allowed to feed her as much as she needs, meowing at her constantly (which REALLY REALLY ANNOYS MUM hehehe), brushing her with the comb taped to a stick so she can’t eat me and playing ‘football’ with her with various colourful, sparkly, jingly ping pong balls. That largely involves someone kicking one to her whilst she then bats it back (almost always to your feet!) again and again and again… She is pretty fab at it (I said proudly, sounding like a demented cat owner…) and it is pretty good ‘physio’ for me, as it has meant moving around the kitchen without using my stick and giving everything a bit of a stretch. I was already managing a bit more walking (with stick) before I left the hospital, but my general strength is coming back pretty well in terms of energy as well. Somewhere I am comfy with, like the kitchen space here, I am happy enough moving around without my stick as I don’t feel nervous about falling, but I am still trying hard to walk ‘normally’ and failing as I keep automatically keeping my toes off the ground and all of my muscles and joints are still being generally sore and stiff ANYWAY which doesn’t help Every couple of mornings (today being one) I have a really bad one and can barely move when I wake up, because my back feels like someone has pretzled it into a twist; but once I have stopped tensing at the pain, wanged down some drugs and loosened off a bit, I am normally a bit better by midday! Re drugs, I have managed to cut down a smidge on some of the painkillers and have my very own holiday drug box 😀 The rest are getting rescued when Dad next is down in Cumbria, as I will still be up here for a bit, so might as well use the time to sort out the ones I no longer have to take.
So yep. I am here for a good few days. Monday I have to be back in hospital for a long day of reviews from various departments and a delicious bag of chemo… The second dose of cyclophosphamide. Kind of hoping to have at least the cryoglobulin result back by then, but the biopsy results will take AGES as I am pretty sure the chunk of Kath flesh was sent off to Newcastle for immunoflourescence tagging…?! Something fun like that. I think they tag the immunoglobulins so they can see what is happening, as well as investigating the damage to various layers of the blood vessel walls etc. Will find out more, as that is probably a load of nonsense 😀
Mum and Dad have both jumped on the ‘toe gap’ game wholeheartedly; Dad’s latest is that Death Toe has gone on his gap year… Mum and I spent a good few minutes deciding which piggy it was – the ‘stayed at home’ piggy, which sadly doesn’t lend itself as well to jokes as if it was the ‘gone to market’ piggy. Very mature. Mum also just pretended to be a hoover before, so that we could chase the cat out of the kitchen and open the door into the rest of the house, as the woodburner had the temp SO HIGH in the kitchen, I was nearly being sick 😀 She makes a spectacular hoover. MUM’S favourite toe/or lack of joke, is suggesting that I can now play that weird knife finger stabbing game thing you always see scary guys doing in shifty underground pubs… Or prisons… (In films I should add, I haven’t actually ever seen anyone other than a few drunk silly friends even NEARLY attempt it!). Only, I am to do it with a sock on and ‘miss’ to obvious general alarm and outcry. This discussed to the point where I was ‘planning’ it this morning whilst lying all pretzled up on morphine, trying to decide how much to scream when I stabbed the gap and what socks to wear 😀 😀
Speaking of socks, I can actually wear them again without them leaving an imprint in my ankles, as the ridiculous level of swelling/water retention has FINALLY gone down 😀 I have normal sized ankles again and you can once more see the general shape and tendons in my feet 😀 Assuming all goes well and I manage to stay out of hospital for longer than a week (not done very well at that in the last six months ) I am going to TRY and go to a symposium conference event organised by Vasculitis UK at the start of March. It will involve a careful balance of getting there and back in one piece and NOT OVERDOING IT, but I am very excited to get to meet some more of the support group – AND – there is a formal dinner/ball in the evening so I am going to have a shower and wear a dress and feel like a human being for a change!! The last time I tried anything that involved socialising anywhere but a sofa will have been Solfest, which I spent a lot of crying because I couldn’t handle the pain from Death Toe… Even prior to that I had largely given up leaving the house, so this will be interesting to see how my energy levels manage, as talking to people etc. has also become something that saps my energy pretty bloody fast, let alone coordinating all of the getting there, hotel room and the physical staying awake/pain side of things 😀 A challenge that will hopefully not backfire. Wanting to start phasing work hours back in soon and it will be a pretty poor bloody start if I can’t manage a day sat in a seat and talking to people
Ahhh so much cat chat. As a final point, please once again have a think about being a good egg and donating some pennies to Leetle Broo and his team for the Edinburgh Marathon. They are fundraising on behalf of Vasculitis UK and are POSSIBLY going to do the run dressed as unicorns haha – I have endorsed that plan. Waiting to see if it happens 😉 Mega thanks to everyone who has already donated. Massively appreciated xxx