As part of my trying to stay calm and chilled today, I have been moving around plenty, had a loooooong hot shower – shaved my legs which gets feeling human points! – Have had some smarties… Haven’t cried all day apart from one or two tiny pain leaks when I overdid it a little earlier… Have been using the oramorph, but at lower dose a bit more the last few days – I am assuming that the increased pain is the necrosis in Death Toe. The oramorph doesn’t seem to make it go away at all, but rather covers it in a fluffy protective cloud blanket, so I know it is there but it is cushioned. Which when you are a teeny bit high on opiods makes PERFECT sense. I had quite a day for sending stupid messages again 😀 My beautiful little veggie friend B got the following at 8.30 am ish as I apparently decided she needed some vegetarian friendly love in her life haha 😀
There is nothing actually obscene there – it is completely PG!! – but it is a bit weird for that time of morning and I am FAIRLY sure I hadn’t had any painkillers of any sort for at least eight hours at that point B understands anyway. I hope. B?!
Tomorrow is Monday. Which means doctors finally around again. Not to knock the nurses in any way at all, but they don’t make any decisions or changes to treatment plans and basically just keep you ticking over the weekend. I had another warm fuzzy moment today as someone else in the online support group mentioned they had been trying to track down Dr Jayne to get him involved for me 🙂 Whether successful efforts or not, the level of care and concern is very moving. It is a week now since the email was sent and the phone calls made, so hopefully something will have come of all of this! In an ideal world (as previously mentioned haha) I would be bundled away in a fluffy blanket and magicked to Cambridge and everyone would throw their best ideas at me and I would be fixed in time for the Monster Monster gig at Halloween. Sighhhhhhh. No Monster Monster for me 😦 That makes Kath horrendously sad.
Tomorrow is the last day of the iv antibiotics planned so far – it was a seven day course – and a swab was taken when the dressing was changed this morning. Now this was sore… But managed it with some deep calm breathing and a shed load of painkillers and DIDN’T CRY! No one has been around to take bloods the entire weekend, so am assuming these will be done tomorrow morning – full infection marker check, usual kidney and liver function, connective tissue immunolgy… and then I will have an idea of how the infection is being tackled or if more antibiotics needed. Not sure how long results will take… When the infection is killed off, I can presumably start rituximab asap despite the necrosis. No one has yet made a comment on the necrosis or a toe plan as no one has been any where near me since it was discovered to be so bad on Friday!! A week ago Friday (14th) there was no sign of osteomyelitis (infection in bone) when they did an mri of my toe (horriby painful!) but kind of wondering how they can get an effective swab result from a necrotic toe surface
The questions I essentially need answering tomorrow (as beautifully phrased and narrowed down by one of the amazing staff working for the charity) are as follows, with the advice to make sure the questions and the answers are documented in my notes:
“What is the clinical rationale for not organising plasmapherisis when I have Ischaemic digits?”
” What is going to bridge the gap whilst we are waiting for the Rituximab to be effective?”
“Can you assure me that my peripheries won’t become even more ischaemic given nothing tried so far has worked (including iloprost)?”
To assist in making it obvious how quickly Death Toe has changed for those who missed the viewing on Friday *cough, everyone, cough* I have created a folder named The Gallery of Death on my desktop. I have found this effective myself already – it wasn’t as easy to see before, but when there are only pictures of Death Toe in one folder, the difference from the previous Monday when it was skinned by the hydrocolloid dressing to today (six days) is ridiculous – so so much more surface area is necrotic. My plan (aided by hoopy friend, who didn’t realise she was talking to someone on drugs and with too much time on her hands haha) is to blow the pics up overnight and wallpaper them along the whole of the corridor on the way up, and make sure not a single Dr in the building can miss them hehe 😉 She had suggested that I don’t give morphined Kath any ideas… To which I had to break the sad news that she was already talking to her 😀
On a brief sideline, hoopy friend has just started real live genuine circus school in Newcastle – something she was born to do and has wanted for so long! – and managed to fit in a visit when she was home. Being a nurse herself, she is actively researching my condition to understand it better and try and come up with ideas to help me. She is wonderful and makes me so proud and happy to know her. She also happens to be an absolute hoop genius and her and her other half have created flashing led hula hoops that are quite frankly, the tits. See the full awesomeness at www.facebook.com/ulaoops
Today has been a day of the general wobbles – one of the women pointed out I was quite giddy this morning, walking around too much compared to what she knows I am capable of by now – this was before the dressing change, so couldn’t be blamed on strong painkillers! Then all day I have been very lightheaded and increasingly shaky and uncoordinated. My finest moment came afer lunch – had just had my long hot shower (probably used whole NHS hot water budget remaining until Christmas – maybe they will have to cut the heating budget 😀 ), and when I came back to my room I was very unsteady and tottering sideways a little. Not quite sure how I managed it, but I decked an entire jug of water all over my table, bed, floor… The laptop survived, but only through some kind of divine intervention – maybe my Grandma’s praying on my behalf in Bosnia has come through after all 😀 😀
It may be the shower or all of the tottering sideways, but the last iv bag this evening appears to have unfortunately gone more into the bandage I have to strap down the cannula, rather than my arm, as I have a very soggy bandage… 😦 The nurse isn’t overly impressed either, I just had a cannula removed and waved at me, saying “This is your worst enemy!” – haha oops! 😀
Had a few lovely bonding moments with fellow inmates again today – weekends do seem to be a bit more relaxed – partly more bank nurses in so the staff seem less stretched.
J spent the midday visiting hours taking her clothes off whilst there were friends and family in their bay – a relatively young male nurse dealt with it very professionally indeed, when she was flatly refusing to stay dressed, but people visiting other patients were getting exasperated She was also trying to steal things out of other patient’s drawers, which when they are elderly and confused was very distressing for them to be sat a few metres away watching and phsyically unable to stop J! Tricky to watch. She also decided I was her only ally in the room, which meant everyone else was looking at me in horror and suspicion as she outlined how our plans had been foiled and the police were coming to bust us…
One of the nurses irritiated me hugely today with regards to P – she has a small plastic pot of something orange (presumably a stomach protector as it was to be had before food….) and she left it on P’s table saying something along the lines of “I know you can manage this, you drink it down for me, there’s a good lass”… Now I have watched someone give this to P in at least ten slow sips every day, as well as the fact that her wall chart says ‘Full Assistance/Supervision’, but when I pointed out she was normally helped with it, I was told she will be fine or someone else would come along to help her later…
So P and I had some bonding time getting whatever orange slop it was down. It looked like liquidised carrots and apparently didn’t taste great, as we established eventually through some yes/no questions that she preferred having a sip or two from her thickened tea in between orange slop. Still not brilliant at communicating with her – she definitely has her fave nurses – and definitely perks up a bit when it is one of the lads feeding her 😀
To be honest, I think she thinks I am a bit demented. The look she gave me the other evening… I was taking off leggings and pants under a long skirt, put on pj bottoms and then removed skirt – all very discreet, didn’t bother closing the curtain at all and I think I was even still mid-convo with one of the other ladies! – and then looked up at P and she was looking at me in utter bewilderment as if I had just stripped naked 😀 She wouldn’t handle J very well!!
In a weekend of trying incredibly hard to stay relaxed and chilled, friends messaging and visiting has been incredible for keeping me entertained and distracted, where normally I would have assumed I would be reading every hour available! I spend a lot of the day trying to rest/painkillered off my face and its actually quite hard to read in that state 😉 – those who know me will know I spend a HUGE amount of time reading normally, but as discussed before, typing is actually easier to get sucked into and proving to be a much better distraction from the pain. Also, being on the laptop and talking general garbage all day is giving me quite a few giggles as well… The below being a discussion on how to keep Death Toe with me should we sadly be parted 😉
It is the little things like this that are consistently cheering me up. My fave came to see me this evening – the featured image is a doodle by her left in my scribbles book haha! We had some lovely hugs and giggling and a LOT of mint imperials for some reason!! She and her wonderful man have taken a load of washing and a mission list as well; all little small things but will keep my house ticking over and stop me smelling awful!! Below mission list was made AFTER the dressing change and I am frankly amazed at the neatness of my handwriting and the coherence, as I was absolutely off my rocker on pain and painkillers. Also a cheeky corner view of the most amazing blanket in the world – had it since I moved out to Uni halls aged 17 and it was one of the first things I asked to be brought in here to improve my nest!
Not sure if I remember pointing out yet or not (need to have a re-read of the last fortnight’s worth of garbage 😀 ) but I am related-ish to one of the women in another bay. She is very elderly, incredibly sweet and easy to have a conversation with and physically not too frail, so she can sit up in her chair and chat to you. She happens to be in the same ward as J and she quite enjoys having a people watch and making observations on her fellow inmates as well. Bay Life favours the nosy 😉 The most beautiful point of our chat today was when she was asking what “the large turkey over there” was doing, and speculating on how many people it would feed [presumably for Christmas?], as it was “absolutely huge!” Hallucinating animals is not completely uncommon, but at least initially myself and her daughter are pretty certain she was referring to the lady in the bed opposite her 😀 We then did manage to slightly alter the conversation to other turkey purchasing problems [in defererence to the lady’s family sitting around her!], such as people fighting over the last one just before Christmas, but the responses were still in reference to the turkey in the room with us… It was amusing 😀
On a final note, it is overly warm in here. Super warm. Cooked my brain warm. I have been worrying about infection and fevers etc. – because that is what you do when you have a toe going black and have been told you are susceptible to sudden kidney damage from your really rare stupid disease! I have been sitting in a vest top now for a fortnight and still feel heated to the point of being a tad clammy 😦 …and then I realised, the majority of people in my surroundings are in their 90’s and have 3% body fat (something low anyway). So the NHS has to cook them and sacrifice me for the greater good. I am a martyr.