… As the Consultant and his band of doctors took their leave, the sound of the metal ring on the curtain rod, sliding back into position seemed so incredibly loud to me in that instant. Sitting on my hospital bed, in the middle of the ward, I was aware of bright lights, a buzzing in my head and my heart pounding through my body… was that the anaemia, anxiety, or a combination of both? As “You have end-stage kidney failure” reverberated around my buzzing consciousness, I became faintly aware of my surroundings. I was aware that my partner, Andy, was crying – and that I was not. I felt like I was falling over a precipice – and there was no room for tears, only a strange sort of paralysis.
As the falling feeling subsided, I became aware of all the sights and sounds around me. The bright lights, the hospital smell and the sound of all the other patients. I became aware that the woman beyond the curtain to my right was shouting – what she shouted chilled me, terrified me and filled me with sadness. “Nurse, I just want to die” became this poor woman’s cry for the next x number of hours. I was exactly the opposite at that moment, “Nurse, I DO NOT want to die!”
The rest of that night/morning reveals itself to me in a kind of haze. My medical condition deteriorated drastically over the course of a few hours, following the diagnosis – and I do not know if that was purely medical, or if the anxiety I felt contributed. I recall going to the bathroom, no more than twenty steps – and collapsing in a heap on the floor; sick, weak and unable to get back to my bed without a compliment of staff to gently drag me there. The next few hours passed by in a haze and I cannot remember the thoughts that went through my mind, or the conversations between me and Andy – that is probably a good thing, a thank you to my subconscious for keeping those memories to itself!
In the wee hours of the morning, I was told that a porter would be along to move me to a private room on one of the renal wards – a switch for which I will be eternally ever grateful. I knew that porters are extremely busy people, running from one part of a hospital to the next, but I had no idea, until that point, quite how fast they move! I was secured under my blanket and zipped along the corridor to my room. I had always fancied, one day, taking a ride and feeling the “need for speed” in a Ferrari or Bugatti Chiron – so imagine my surprise when that dream was realised in the corridors of a South London hospital!
Monday slid passed as I waited for someone to come and talk to me about my dialysis options going forward… but nobody came. Until Tuesday morning that is, when a nurse walked in and said “Stacy, it is time for us to put a line in your neck”. As I am sure you can imagine, this was not something I was ready to joyfully jump to and get on with doing, mainly because I had had absolutely no warning or information and had no idea what she was talking about. When I articulated this, she seemed surprised that nobody had explained my options to me and proceeded to hand me a booklet which would apparently tell me everything I needed to know. As I mentioned above, I have a visual impairment, which doesn’t have as many challenges as you may think. However, it does present me with a bit of a challenge when I am handed a booklet, which may as well be entitled “life changing decisions – everything you need to know” which I am then unable to read! I requested the booklet in electronic format – a suggestion which was greeted with confusion and a claim that it did not exist. I still do not know if this is true, but if so, this is a massive and unnecessary barrier for all patients and their families with any form of print disability – though I hate that term! I was told that as I had not reviewed my options then they could not go ahead at that time and insert the line into my neck… “fine by me” I thought! Sometime later the head Junior Doctor came to see me and explained my different Dialysis options. This was so new and overwhelming to me and there was so much I did not know. So, I was naturally asking the doctor as many questions as I could. She became impatient with me and said, roughly half an hour into the conversation “okay, you can ask me just one more question.” I began to panic, wondering which one of the hundreds of questions in my head was the most important! I was advised that having a line inserted into my neck would be the safest option, as I was not well enough to undergo the general anaesthetic necessary to put a line into my stomach. At the time, both options sounded absolutely horrendous and terrifying and I was back and forth on whether or not I even wanted to go ahead at that point…