Great excitement at the hospital. After much anticipation, as of today we finally moved into the heralded new unit, down the road from the old one. It is much larger than Bostock, and is light years ahead in terms of modernisation; it is clean, for a start. Yet I am sceptical. I feel just as my dearly departed Grandma Nina did when my Pop-Pop died and she was left with no option but to leave her home and move 300 miles from Wales to Kent, into a dinky little house ten minutes away from my Dad. I am the renal equivalent of a crotchety, eighty-four year old woman who knows what she likes and likes what she knows: Bostock might have been old and dingy, but it was familiar and I had just about made my peace with spending so much of my time there. Just.
I was lured to the new premises on the promise of a self-care unit where I could come and go as I please and get on with performing my treatment myself in quiet and tolerable surroundings. On my way to "Olympic Room", where I am currently housed (it's counterpart being "Jubilee Room" - yes, really) I passed by the small, serene looking Home Diaysis room that has been kitted out with a handful of machines and looked as inviting as a dialysis unit is ever going to get. Except, it is only Day 1 of our dialysis diaspora so the Home facility is not yet up and running and nobody could tell me when the blood might start pumping. For the meantime, I am stuck in fucking Olympic Room and feeling particularly un-sportsman-like.
I am sharing the space with all the loopy, decrepit geriatrics I have spent the last five years trying to avoid; the cavernous ward echoes with the bleeting of the machines as they alarm because yet another of the old dears has fallen asleep on their tubing. When they are awake they are hooting and hollering for one reason or another, usually because they are imminently about to perform some sort of bodily evacuation, or else are wondering where the tea lady is. Talking of whom, the ice machine has yet to be plumbed in so no ice chips as yet, and we only got one lousy round of biscuits today. How anybody can function in such depraved conditions is beyond me. My lovely gay nurse Joe got waylaid just as I was preparing to put my needles in, so in a fit of frustration I got on with the job myself and for the first time put myself onto the machine entirely unaided. This is something of an achievement, especially as a mere six months ago the very idea of doing my own needles left me aghast, and not a little queasy; however, such a feat is at odds with my current state of mind.
In recent weeks - it might have been months, I've lost the ability to accurately track the passage of time - I seem to have forgotten how to "do" kidney failure. Is this possible? It is as though I have woken up to find I no longer remember how to brush my teeth or make a sandwich (which really would be disastrous, seeing how much I like sandwiches). Those elements of living that were once second nature, whilst not exactly enjoyable were at least manageable, and offset with friends and cocktails and good days at work, have now become fraught with fairly intense anxiety. I appear to be doing quite a lot of unprompted crying at the moment which is humiliating for both me and those around me - the waiting staff at Bread Street Kitchen were faintly appalled - and not a lot of eating. If only I could eat as many Kit-Kats as I could shed tears. I have the concentration span of a three month old child, and having just spent eight months watching a baby develop I am partially qualified to tell you this is meagre. My friends, my family, my book, my Masters, my eyebrows...all the things I used to enjoy spending time on have barely had a look in. I apologise to anyone reading this who is waiting for a reply to a text/email/Bar Mitzvah invite. If it is any consolation, you are not alone.
The problem is that I have nothing tangible to work towards. Dad's work-up is in limbo, with no guarantee it will result in a transplant; my progress towards home dialysis is riddled with similar torpor, and I cannot move forward on that front until Dad gets the imperious thumbs down. I can't pin-point precisely when things became so un-nerving, and whilst undoubtedly the situation will rally, sometime, somehow...for the time being I find myself living from moment to moment, too afraid to think much beyond the end of the day. All I want is an end to all this uncertainty. The days I spent waiting for a transplant (though I now know they were in folly) were hard, but at least they were...familiar. I could wait for a transplant, I had coping mechanisms to do that and though I may have rallied against them often, amidst all this current bewilderment they suddenly seem like halcyon days gone by.
This said...if I could go back, I wouldn't. Change comes to us all and you never know where it might lead you. I shall give the new unit a chance because the Devil I knew better has gone, and eventually it might even prove to be the last stop on my long journey home.
I was lured to the new premises on the promise of a self-care unit where I could come and go as I please and get on with performing my treatment myself in quiet and tolerable surroundings. On my way to "Olympic Room", where I am currently housed (it's counterpart being "Jubilee Room" - yes, really) I passed by the small, serene looking Home Diaysis room that has been kitted out with a handful of machines and looked as inviting as a dialysis unit is ever going to get. Except, it is only Day 1 of our dialysis diaspora so the Home facility is not yet up and running and nobody could tell me when the blood might start pumping. For the meantime, I am stuck in fucking Olympic Room and feeling particularly un-sportsman-like.
I am sharing the space with all the loopy, decrepit geriatrics I have spent the last five years trying to avoid; the cavernous ward echoes with the bleeting of the machines as they alarm because yet another of the old dears has fallen asleep on their tubing. When they are awake they are hooting and hollering for one reason or another, usually because they are imminently about to perform some sort of bodily evacuation, or else are wondering where the tea lady is. Talking of whom, the ice machine has yet to be plumbed in so no ice chips as yet, and we only got one lousy round of biscuits today. How anybody can function in such depraved conditions is beyond me. My lovely gay nurse Joe got waylaid just as I was preparing to put my needles in, so in a fit of frustration I got on with the job myself and for the first time put myself onto the machine entirely unaided. This is something of an achievement, especially as a mere six months ago the very idea of doing my own needles left me aghast, and not a little queasy; however, such a feat is at odds with my current state of mind.
In recent weeks - it might have been months, I've lost the ability to accurately track the passage of time - I seem to have forgotten how to "do" kidney failure. Is this possible? It is as though I have woken up to find I no longer remember how to brush my teeth or make a sandwich (which really would be disastrous, seeing how much I like sandwiches). Those elements of living that were once second nature, whilst not exactly enjoyable were at least manageable, and offset with friends and cocktails and good days at work, have now become fraught with fairly intense anxiety. I appear to be doing quite a lot of unprompted crying at the moment which is humiliating for both me and those around me - the waiting staff at Bread Street Kitchen were faintly appalled - and not a lot of eating. If only I could eat as many Kit-Kats as I could shed tears. I have the concentration span of a three month old child, and having just spent eight months watching a baby develop I am partially qualified to tell you this is meagre. My friends, my family, my book, my Masters, my eyebrows...all the things I used to enjoy spending time on have barely had a look in. I apologise to anyone reading this who is waiting for a reply to a text/email/Bar Mitzvah invite. If it is any consolation, you are not alone.
The problem is that I have nothing tangible to work towards. Dad's work-up is in limbo, with no guarantee it will result in a transplant; my progress towards home dialysis is riddled with similar torpor, and I cannot move forward on that front until Dad gets the imperious thumbs down. I can't pin-point precisely when things became so un-nerving, and whilst undoubtedly the situation will rally, sometime, somehow...for the time being I find myself living from moment to moment, too afraid to think much beyond the end of the day. All I want is an end to all this uncertainty. The days I spent waiting for a transplant (though I now know they were in folly) were hard, but at least they were...familiar. I could wait for a transplant, I had coping mechanisms to do that and though I may have rallied against them often, amidst all this current bewilderment they suddenly seem like halcyon days gone by.
This said...if I could go back, I wouldn't. Change comes to us all and you never know where it might lead you. I shall give the new unit a chance because the Devil I knew better has gone, and eventually it might even prove to be the last stop on my long journey home.
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