Now I am normally a pretty chirpy, optimistic sort of person, trying to see the light side in pants situations… or make something humorous out of a chronic illness where I am in pain all the time and have a necro appendage…
Tonight I am noticing that Yoda doesn’t actually specify WHO will be doing the suffering…
Spending the time working through a mental ‘shit list’ // devising ways and places to gnaw my toe off before they catch me // wishing certain persons could witness me in this particular quiet cold rage so they would be too scared to say I am incapable of looking angry [you know who you are Jim!] // wondering what Death Toe would taste like and if necrosis makes human flesh taste more or less like bbq’d chicken… Thoughts and opinions from the floor welcome.
Today started off being not particularly fabulous. For petty reasons… No one brought our room water for a long time (and we aren’t allowed in the kitchen/I couldn’t walk this morning/no one else in our bay can even get out of bed), I really needed painkillers from the second I opened my eyes and couldn’t swallow them without said water – and they only had weetabix or rice krispies for breakfast options. As previously mentioned, I hate actual weetabix and rice krispies are a bit of a ‘meh’ way to start the day unless mixed in with a cheeky handful of sultanas 😦
It took me a while to realise that I was getting an increasingly tempermental Death Toe – already played up a lot yesterday! – and I am used to a fair bit of morning pain before the blood is moving and the painkillers are downed. Then I assumed it was because the dressing was due to be changed today and that it must just be working loose a little. Again, quite standard explanation for increased pain.
Rounds happened fairly early today – it wasn’t my Dr, but another rheumy consultant who came to see me with the bunch of med students and first years. He looked over my charts, pronounced my diastolic blood pressure – hell blood pressure in general a bit worrying, asked if I was in any pain – which I responded to very politely – stepped literally half a metre away and asked that a referral of some sort is worked out to look into it, as I ‘have a potential connective tissue situation’ – which is in reference to the need for some underlying cause to the cryo, such as lupus. Irked me a bit as a) not deaf and b) past the point of being worried by the expression ‘connective tissue’ about 12 months ago now. Discussed the iv now able to be delivered by bolus – e.g. a sodding great big syringe slowly squidged down the cannula instead of leaving it to drip in. Have decided with hindsight I much prefer the drippy method. Also got told pneumonia vaccine had arrived and this did indeed get delivered and squidged in fairly shortly after. Final discussion was along the lines of – ‘the dressing is being changed later today? I would be interested to see it – give myself and [my rheumy Dr] a shout beforehand or at least take pictures…’
The dressing change involved anticipatory oramorph, a nurse who listened very carefully to what she was about to do for me, looked at the pictures to get some initial idea of what she would be facing/prep her dressing style and laid out the surgery on my bed in advance – that alone always earns big points, as once started and exposed to the cold, any delay makes me feel worse and a smidge murderous… So far so good! The dressing eased off very nicely (she let me do the removal, which again earns big points). Too nicely… Nothing like as sore as I had expected, because shitting Death Toe had decided to go from skinned and pink and clean (although very raw…) (see previous likening to baby mice), to skinned and black and dead. Still quite clean… But at least 50% more black than the last time I had seen it 48 hours before hand. The pictures were dug out again, it was agreed that yes, that was an increasingly necrotic toe; we had a wonderful little photoshoot for all those who couldn’t make it [the entire rheumy department….] I DIDN’T cry and calmly dealt with the new dressing with some deep breathing and a couple of choice words.
I then lasted about… two mins before drawing my curtains and very quietly sobbing and snotting into my pillow for quite a while, before inside-friend came poised with babybels intended to throw at me [I had expressed a need for cheese], and ended up giving me a cuddle for ages, whilst I bawled about my dead toe. She puts up with quite a lot!!
Remained quite despondent and floopy – RUINED my hospital Friday fish and chip experience! [looked a bit crap anyway] but then had a nicer moment later in the day, with a phone call to a Dr in Carlisle – nothing to do with me or my case at all, other than being the Dr of one of the people I have met through the online support group, who had offered to have a chat to me when his patient had contacted him and expressed his concerns and asked for his advice. Ended up with him saying he was happy to get in touch with Addenbrookes Dr and chase up the referral situation for me and get me some independent feedback [- no reply as far as I am aware since emails/msgs from Monday]. He also offered to throw in his two cents and get in touch with my Dr if all else failed. This was massively appreciated; I also had another person who has a Mum with cryo get in touch today and offer to share links and info she has slowly been collecting. Given its rarity, even hearing someone else knows what it is is amazing!
M made me a personal song as well to cheer me up, which went something vaguely along the lines of “IIIIIII’m thinking about youuuu…. IIIIIIII’m lonely without you…. Get well soooon – Kath-er-eeeeeeeeeeeen!” Not only sung once, but many, many, many times until I was feeling a lot more chirpy.
Today was flushed firmly down the pan by the complete and utter failure of anyone in the rheumy department to come find me at any point after morning rounds and see how I was doing. Or enquire about Death Toe if that was more exciting for them than my feelings. This is despite much later in the afternoon me deciding I wasn’t being a pest by enquiring, and finding first not-my Dr, at which point he said he would come find me imminently to see the photoshoot results. Then when he failed to materialise, I was hovering and saw MY Dr briefly doing a fly past the Ward reception desk, who said she had had no word from Addenbrookes, listened to me say I could really do with a chat and then never came back. I doubt she was unaware of why I was upset as the entire ward will have heard me bawling about my dead toe – and I had very obviously been crying, as I am not one of these girls who can cry beautiful pearly tears and have it enhance or highlight their frail and delicate nature. Nothing. Nada. Zip. Checked several times if she was still around and no one knew – I gave up hoping about 8pm and settled into ANGRY KATH MODE. Actually made myself feel quite sick being angry!
As the last 12 days have demonstated, that was my last chance to see a Dr now until Monday afternoon at the earliest. Unless I chew off the bugger myself and end up getting sent down to A&E, where they presumably do have a Dr over the weekend… Fuck only knows how much more toe can die over the weekend 😦 Especially when the little slime ball is supposed to remain clothed now until Sunday – TO PREVENT INFECTION by the way… Death Toe is already pretty bloody infected!! How can I have spent more time talking to a Dr who works for a different NHS trust, let alone hospital, in one phone call, than talking to all of the rheumy consultants in this entire hospital put together in the whole week??? Seething -.-
Also making my new shit list is a night shift nurse I haven’t met before this evening (who in all honesty I am partly angry at as he is not one of the girls I know will give me a hug, when I sart bawling at 4am). We didn’t start off on a particularly good note though… If I’ve just explained to you that I have a bandage around the cannula on my hand so that I don’t continually catch it on things (surely standard practice??) and so it doesn’t wiggle around, when every wiggle hurts – Oh and that it already feels a bit sore!… Please don’t remove the bandage, pronounce it ‘fine’, hook me up to an iv and sod off leaving me bandageless and wiggling!!
UPDATE: This particular lad has now been forgiven a lot as he produced painkilling goodness very promptly when I finally cracked at… Ooo look at the time!
FURTHER POST PUBLISH UPDATE: He is actually lovely, I was being mean 😉