Alarming

I give thanks for being home on my sofa, coat still on and hugging a hot water bottle until the place heats up. For having made some food over the weekend that just needs heating up too. For the hours I have off until another afternoon at the unit tomorrow, during which I hope my argumentative fistula will settle down a bit so the machine will make less of a racket and treatment will be more successful than it was today. For not having Wednesday's surgery cancelled yet...and for having a hiccup about Tuesday's scheduling resolved (probably)

I give thanks for streaming and recorded TV as I'm in zombie mode and there's nothing on terrestrial this evening that appeals. For remembering there's remains of a sort of pudding too when I can be bothered to move again...For setting my alarm for 6.00 in the morning again, to make even earlier the day after (slightly) less of a nasty surprise

Out

I give thanks for feeling less weak today, though easily weakened when I forgot to do that infuriating 'pacing' myself. For bright weather, and for being bright enough this morning to plan a takeaway cuppa on a seat in the park, though by the time I'd completed the various necessary tasks to be ready to get there I was too weary to bother, and there were far too many people about anyway. I give thanks for the tide being also out however, and a patch of sun-dried sand at the base of the sea wall to sink on to and enjoy the sights for a few minutes while summoning the energy to return for a cuppa on the sofa instead. How grateful I am the sea is the proverbial 'short flat walk' from my door!

I give thanks for starting to create some food for a couple of next week's post hospital teas, and for a nice Thai rice pot instead of trying to make something for today too. For finally realising (after how many years?) that you can can cook beans in a slow cooker instead of forgetting about them on the hob and burning them as I usually do!

I give thanks for the pretty sunset and for my Tesco delivery being complete - except for the books! For having other books as yet unread. For my Insight Timer subscription being half price again this year. 

Decisive

So today's been mostly about carefully taking care of my rather delicate self. For those of you who don't have multiple morbidities, or who do but live with helpful partners, this involves weighing up the pros and cons of each small action. Would I feel better if I made a cup of tea and some toast. ..or better if I just stayed curled up under this quilt instead? Would it be better to do a little bit of washing up now...or have a whole load more waiting for later. That kind of thing... I give thanks for plenty of practice over the years at making these kind of weighty decisions, and for understanding washing up mysteriously gathers whether I make that tea and toast or not! 

The drug seems to affect my brain as well as my T-cells, so that it's been as murky inside my head as it looks to have been outdoors, and I give thanks for this meaning I don't really notice how meaninglessly the hours have been drifting by, nor feel I'm missing out on much. For managing to stay upright (though sedentary) to fiddle with my mosaic for a short while and for a new idea for a design I'd like to try when I can stick at it a bit longer. 

I give thanks for having my new skin cream to try and, though it's too soon to tell if it will be a success, at least it's not made matters worse. I give thanks for Mr Tesco is due tomorrow. Don't need a lot of groceries this week so I'm grateful to make up the minimum no surcharge order he is also bringing books! 

Needled

I don't mind when people can't fix me, as long as they listen and try, so I was very grateful when the doctor I saw yesterday called this morning with an action plan from dermatology. And then the vascular access team called with the latest update on my surgery booking, which sounds a good one. Fingers crossed!

For an OK dialysis session, nurse getting the needles in without difficulty and the machine not arguing all afternoon though my blood pressure had a bit of an argue and someone set off in another part of the building a very noisy alarm that rang in ours for ages and set everyone's head ringing too. I give thanks though another patient had some music channel playing way too loud, I did enjoy 2Unlimited Get Ready For This - as usual! Also for How to Sell Drugs Online (Fast) which is my latest Netflix treatment treat. 

I give thanks for my nice local taxi driver being up for picking me up after treatment two, and managing to organise a well timed taxi to take me between the hospitals in the gap between appointments. For the chemo ward running to schedule which is unusual at that time of day, and cannula in first time no messing.  I give thanks for the weekend. I'm ready for that! 

Ruffled

Wow another beautiful winter's day! I give thanks for being able to appreciate some of the scenic sights of it, particularly on an unscheduled train journey into the city to have my skin inspected after phone triage. The fine mist made the golden countryside and silver of the almost empty estuary even more spectacular. I give thanks for the optimism with which I set out... and for my patience when most of the day was spent waiting with no conclusions reached. The bit with the private room with a comfy chair was my favourite - I even had tea and toast made for me! I was even more grateful when my visit was finally concluded though, and for the pretty ride home with water coloured skies turning to sunset marble reflected in the high tide and a rather ruffled looking heron waiting for a cold fish supper! I give thanks for living in such an eye candy county...

I give thanks for being polite and understanding when I got home to discover next week's op is cancelled...and merely shaking my head in disbelief when, after popping to the Co op for post Pembro wiped out weekend supplies, there was another message saying they were making a new list and the surgery might be back on after all, but they wouldn't be able to confirm until Monday. For some leftovers to heat up for my own early tea and for some old QIs to cheer me up with fascinating facts and quick fire humour. There were so many things I planned to do today but methinks some flopping on the sofa might be most of happens now for the rest of the day. I give thanks that none of it matters.

Consumed

Seeming to be extra hungry at the moment, I give thanks for packing my lunch box extra full as there's no getting up to get snacks when you're on the machine. I'd have been even more grateful if I'd remembered to put the lunch box in my bag of course! It had already been a day of some tooth gritting and grinding by the time I unpacked my bits ready to start the afternoon so I was extra grateful for popcorn and custard creams that hadn't fitted in with the sandwiches, fruit and sausage rolls. Oh and that I already made spicy lentil soup yesterday to eat tonight, and managed not to burn it or my mouth too badly hurrying to consume it.

It's been a beautiful day weather wise and I give thanks for the part I got to appreciate. For a silver stripe of sunshine on the green grey sea. The wagtail chirping below my window. Winter blue skies and cloud banks that looked like mountain ranges looming behind low hills

For passing the two lanes called Above way and Higher Above Way which I always forget to mention, and which always make me smile. For being the first with the news to the ward clerk that my surgery had been changed again, and then her checking and being first to tell me it had been changed once more since yesterday afternoon. For Annie Nightingale's Punk and New Wave memories to help take my mind off the itching burning lumps and holes in my skin which continue to grow and multiply, but which so far seem to be of no interest to anyone else but me. I give thanks I'm due for pre-Pembro phone triage early tomorrow. I've always been asked about my skin so here's hoping this time I am and the doctor actually listens...because I've looked on line (Oh god I wish I hadn't) and this is a classic case of a known effect of the drug on the immune system, which could go away with the right response and will only get worse without. 

Drifting

Well that was a nice day out of the office! Though as soon as I wrote that the phone rang with another change of fistula surgery plan. This time we're going back to the one we first thought of, on the second day they decided but at a different time! I give thanks I only have my own small life to reschedule over and over again, those poor admin staff who have to sort all the associated arrangements, plus possibly disgruntled patients, must be finding life extra stressful these days. I'm also very grateful I'm in charge of my own transport now and have a helpful taxi driver to deal with not an exasperated ward clerk! 

I give thanks for following my heart while the sun shone earlier and making a short, not strictly essential, journey to somewhere where there was more space for people locked out of most shops to mill around with takeaway coffees and teas. For the breathtaking views of the cruise liners from the top of the bus and hill, and a seat to myself overlooking the end of the beach to eat vegan pizza and be visited by a crow. For the drifts of oak leaves on the sand. For running into the delightful Mr Haines, a spot of solitary shopping in the proper job fruit and veg shop where you can buy a solitary potato should you choose (and if you're a renal patient you surely should!) and an unexpectedly yummy late lunch in a bag from a baker's that I don't normally rate very highly but happened to be passing. I really enjoyed my brief change of scene and give thanks unexpected changes of plans next week made it turn out a timely time to do it.