Still got a Death Toe! Day 24 is a little more relaxed and involves NO CRYING :D

I think if I couldn’t laugh about this and my friends and family couldn’t laugh about this with me, I would have quit quite a while ago… So for future reference, unless I am actually bawling my eyes out, I can generally take most levels of toe-related humour 😉 The featured above being from the same disgusting man responsible for instigating the funeral plans/glitter comments yesterday 😀

My Dad I have already said is especially fond of his toe puns. I am saving some of his better ones for when Death Toe and I have to part ways one day, but an example of this would be a card (addressed Toe Kath…) which had the front and then inside as follows:

20161031_075148-1

20161031_075156-1

I let him away without getting pedantic and correcting him to 9 3/4… He does like to think he should have been in advertising 😉

So after yesterday’s combined iloprost fiasco and the whole ‘refusing methotrexate’ business, I can confirm that the iloprost arrived… was set up for six hours… and as I was so completely knackered from a day of crying, exciting visitors and stupid circular arguments, I fell asleep for at least the first three hours!!! Then woke with blinding headache, had some oramorph, had my obs done, set an alarm, passed out again and EXACTLY six hours after the start time (something like 4.57am in the morning) took great pleasure in buzzing for the horrid stuff to be unplugged from my veins. As it was going into the crook of my elbow, much bigger vein so no localised reaction (superficial thrombophlebitis 😀 ) and then managed another hour of sleep in little dozy chunks between wake up for morning obs/curtains being dramatically yanked open/cup of tea/breakfast etc…

The gentleman Dr responsible (I believe) for the initial meth refusal comments came round during morning rounds, with a junior Dr who knows me quite well by now. Instead of feeling ranty, I was on such a post-iloprost high that I tackled it along the lines of ditzy confused “oh no what have I done wrong…?”… It makes me sick to do this, but sadly, it fairly often works 😀 I think I can actually be so sweet and innocent as to be dangerous hehehe – don’t underestimate short squeaky smiling people!!

We managed to establish in several discrete steps that a) it had been stopped because I was infected, and that this was on my Dr’s orders, b) I was as far (as far I was aware -*slightly scared confused face*), still infected, c) no recent blood tests or swabs had been done that confirmed I now WASN’T infected, d) look I’m still plugged into iv benzyl penicillin, doesn’t that mean I’m still infected? e) so….  *I’m very slowly puzzling through this as we talk face* do I not have to wait until I’m not infected to start it again? Yes? Oh wonderful, that makes so much more sense, I thought YOU thought I was refusing it!!! Leading nicely to f) would it make sense to get some updated bloods and a swab to see if I am still infected, so that I can restart it if it has cleared? (*not sure if this is a ridiculous suggestion, will bow to your superior medical expertise tone*) Yes? Amazing news – what, you can do that this morning? Oh isn’t this all splendid! -and g) I continue the antibiotics until that point I am confirmed infection free? Stupendous!

Half an hour later, I get some updated full blood count vials sucked out and everyone is quite happily buzzing around, no longer trying to meth me to premature brain death.

The more astute Dr (than the one responsible for the meth irritation) who is officially in charge whilst my Dr is on leave, saw me briefly this afternoon… He would have seen through that shameful ditz ploy in a second, but as it was already sorted, it didn’t matter 😀 What DID get discussed with him was that the stupid toe on my OTHER foot – baby Death Toe, is definitely starting to accelerate, having made whimperings in December and then not a peep since in terms of further ischaemia, all the time that Death Toe was going beserk since March. I have also had a quite marked increase in the pins and needles/numbness in all my fingers, which he really is not impressed with – especially when he could feel the obvious temp difference and see the purpley/blue tinge to all of them 😦 He has put an urgent chase on the MRA – checking for anything else exciting going on in the medium/larger blood vessels, using Death Toe leg as the test subject. This will have the added bonus of double checking the osteomyelitis situation (we are hoping for a complete lack of situation still) and the general Death Toe falling off timeline… (I presume you can get SOME kind of idea from an MRA?!). I ended our efficient, task-ticking chat with a further plea to reconsider a short sharp full amputation from the bottom, with a good clean margin AND no 48 hourly dressing changes and waiting for the bloody thing to fall off… On the very clear understanding that I knew it would need to be medically appropriate in terms of infection risk and circulation for the healing. He seemed completely happy with that being a rational request and I am feeling MUCH more confident that it may be a possibility, if not immediately, then once the underlying situation has been confirmed/treatment started/DEFCON level (other defense readiness measures are available) has reduced a little!

14937984_10154775542692932_1567349426_n

Forgot to add yesterday in my rantiness, but as well as cupcakes and hugs, my ladies also brought me THIS beauty 😀 Sadly most of the medical staff seem to have already been given one themselves on receipt of their flu jab and don’t even blink, but I like to think it maybe makes one or two do a double take 😉 We also established that methadone is a similar colour, so it adds a certain dark edge to my table of multi-coloured wool, innocent smoothies and spare mittens…

Death Toe was redressed today – I forgot to get the promised swab, but DID get pictures – essentially necrosis still not spreading any further two weeks later! – and starting to look… shrivelled almost at the line between Death Toe and Kath Toe. I was behind a closed curtain and gave a woop and yelled “Still have a toe!!” as everyone, visitors included were on tenterhooks haha – and I was high on oramorph 😀 From the shape of the demarcated bit, I am going to be left with a very weird jaggedy stumpy bit if it DID fall off along the line that is currently showing… and I am trying to calm down about the horrific panic each time it is getting a new dressing, as realistically it is going to take some time to seperate and I will get a bit of wobble or loosening (surely?!) before it just comes off in a dressing one day! It was hellishly sore as normal, but NO TEARS! and I was also being as brave as could be, as it was a lovely student nurse who did the dressing and I didn’t want to make her nervous or distract her. She had done dressings before, but she was careful to get everything prepped as I advised, which I loved, and I have NEVER had anyone be so careful about doing it in a completely sterile way! This is in no way implying that anyone else has made me nervous about cleanliness, but I actually told her to relax once or twice as she was being hyperaware of cross-contaminating bits that were then going onto the same toe… All excellent practice I guess!

In a very random aside, I just found a wonderfully silly facebook page – this sums up the content (see artist on the image!) and I will refrain from spamming everyone now and keep it to myself going forwards haha 😀

6cd8848bdf20f09b10513f68ee0c9654

My great great aunt, of ‘down the corridor, best friends with J (whom she calls Alice) fame’ was asking how my foot was today, and I told her that my toe hadn’t fallen off yet. I then followed it with saying that my brother was keen on getting it in a jam jar for a Christmas present (a very real and serious request) and she was absolutely in stitches 😀 compared to her visiting (much younger) neighbour who looked green 😀 It gives me the warm fuzzies to see people come in to visit others in here when they are not related, or don’t have any particular motivation other than to make the other person happy. In aunty’s situation, she will sometimes not recall the visit or the absence of a visit either way, or would imagine a visit that hadn’t happened… Such is the sad reality of dementia 😦 She does however remember me now at least, which feels amazing!! Her buddy J (who sits in the opposite corner) and her wave at each other and pass messages through me, as both find it very hard to walk/are banned from getting up. J and I had a lovely chat today as aunty already had a visitor so I thought I would have a catch up with just J. She was incredibly lucid and coherent for at least half an hour, and we talked about her school days, her fave books… how much she liked her budding friendship with my aunt! The loveliest bit about talking to her, is that she always thanks me for coming to visit her in a very formal polite manner, even if I have just stuck my head around the corner and said hello! She can be really mean to the staff, but I think I am safely in fellow prisoner category so we have had many conversations now about jail break plans and how to subvert the staff and their evil nefarious plots. She is sweet as pie to them one minute and cursing them the next!  I obviously don’t immerse myself too deeply (that way lies the danger of mocking or patronising… not sure how to phrase it…), but rather than destroy the discussions, I have found a slow subject change and not outright disagreement works better.

I got my biopsy today – basically got to go down to the dermatology bit and into a room labelled ‘minor operations’ which on a post-oramorph, dressing change high absolutely cracked me up for some reason :/ Not so sure why now, but I was very tickled. Also am aware I talked the ears off all three of the doctors/nurses in the room 😀 To the point where I basically didn’t pause my nattering for a second, when getting two small punch biopsies from above my knee. These were taken from a bit that is always very distinctly mottled, as the plan is to get an idea of what the tissue damage is like under a microscope and also to do something called cutaneous immunofluorescence testing which will show up immunoglobulin deposits and give a better idea of the underlying diease behind the mottling! (I am a proper dweeb and plan to learn all about this tomorrow!) The bits were MUCH smaller than I had been expecting! For some reason, I had decided it would be like a potato peeling?? – and the local anaesthetic was by FAR the most nippy bit and I literally haven’t had a second of pain from the two little well holes since! The sad bit is this will likely take a few weeks to result in any answers at all, so hopefully some other results in the meantime…

Speaking of which, the most recent cryo test that was done here and not to the new standards that were being passed down from above, has unsurprisingly come back negative… It was basically already considered invalid though and I think I managed to convince the Dr responsible for telling me – and then apologising for the fact that they didn’t have everything ready to redo the test properly at this hospital – that the challenge of either getting me to the proper testing equipment in Preston for the day, or stealing the testing equipment… requisitioning it? – for a day, was not in any way insurmountable, when a syringe of the evil iloprost could be emergency couriered up with an hours notice! That is a long sentence… Meh. Leaving it. Take some slow mental breaths.

Oo happy thing – the med students I talked the ears off a while ago came back, to say that they had passed their appraisals using me as a case study 😀 They apparently did really well, which was lovely – all of the info I was throwing at them gave them a lot to research and cover! – and they were following up on the news I have had since, as this was maybe two weeks ago. They were also checking they could use me as one of their write-up cases 🙂 Lucky for them, they came in time to see some updated pics in the Gallery of Death haha 😀 I have started to enjoy surprising anyone vaguely medical looking by leaving the pictures up on my desktop screen and turning it to them to check how strong their stomachs are 😀 Definitely need to get some more hobbies in here…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s