What I am wanting to write today started just and hour after I wrote my last post, as you know I was prepping for my endoscopy, what neither your nor I could have know was all that followed, or that by the end of the day we were ready to send in a complaint.
At 2pm on Thursday I had had nothing to eat as I was instructed and very little the day before, I mixed up the first of 4 liters of the gunk they had sent me, the first sip brought a clear memory of 8 years ago when I was drinking the same stuff, I knew the flavour as well as if I had just been drinking it the day before. I can’t compare it to anything as I have never tasted anything like it, I tried to mask the flavour a little by mixing it with tonic water instead of plain water and loads of lemon juice, a system I had used successfully in the past, it helped a little but it wasn’t great. I just two hours I have to drink 2 liters of this stuff. I don’t know if you have tried to drink 2 liters of anything in that short space of time but it is really hard, by the end of the final glass I was nauseous and blotted to the point of feeling I would burst, but nothing at all had happened. I felt so bad with it that I went and laid myself on my bed, sitting was to uncomfortable and I was also exhausted, I had missed my afternoon sleep. I managed to stay there for just over an hour when I at last needed to head for the bathroom, to my disappointment I did pass some stoles but they were normal to me, just as though I hadn’t drunk any of the horrid stuff, worst still I was still bloated and I had 2 more liters to drink.
Although like the first 2 I was supposed to drink them both within 2 hours, it took me that long to manage one of them, even though half way through it there first signs of success appeared, as did the first signs of my meds not holding off the pain or the even having taken a double dose of anti-nausea med I still wanted to throw up. I did take some of the liquid morphine I had been given as it wasn’t just pain break through I was also breaking into sweats and feeling like hell. I never drank the last one, it was impossible, I had to go to bed again. It wasn’t quite 9pm but I had no energy left, I had to get up again and move as fast as I could four times but after that I slept. At 4ish I woke again, sweating and feeling like hell, I had no doubt this was a side effect or withdrawal if you like, I was in pain and I had no choice to take some more morphine. With it being liquid it went into my system quickly and sleep took over again.
7:30am and it was the alarm clock that woke me this time, I still felt like hell and I knew I needed my meds, with in 20 mins of taking the right doses of all my cocktail I felt human for the first time in 12 hours. All of that sounds bad enough but expected really, it was the rest of the day that has left us ready to send in a complaint to the NHS.
Adam went to work and I knew that I had 3 hours to get ready so plenty of time for me even in my slowed down bitty way to manage it. Wash, dressed, hair and makeup done I was sat ready to go at 11am, the ambulances don’t give an exact time but they ask you to be ready 2 hours before your appointment time, which is fare enough. I then sat here just tinkering on line not wanting to start anything as there was the chance I wouldn’t get it finished. I had all the curtains shut as firstly it was freezing out there and second I knew it would be dark before I was home again. So I waited and waited, at twenty to one I phoned as there was no sign of them, the operator who I spoke to was nice but said something I didn’t believe she thought she had the authority to say. She said that I wasn’t to worry as the it was on the way and although I would be late that I would be seen when I got there. I questioned that but she was totally positive about it. I hadn’t been off the phone for more than 5 minutes when I heard what I though had to be it, so I switched everything off and put my coat on. It always takes a few minutes for them to get the climber and to put out the ramps and so on, but they didn’t ring the doorbell, it was then I opened a curtain to look out and found it wasn’t the ambulance but a delivery van for the corner shop just a couple of doors down from us.
1pm came and went and I phoned Adam as I knew he would be on his lunch break. He was on his way to the ward to seen me and couldn’t believe that I was still at home. He went and spoke to the nurses and they said that as long as I was there in the next hour or two it would be alright. Reassured a little I took my coat off and waited a bit more. At exactly 2pm they arrived. As always they were really nice and told me the ambulance I was supposed to be in had refused to come as they were so behind and had others to drop at the hospital. They had been given the job at 1:30 and they didn’t have a stair climber so they had to carry me down in a slope chair. When we got to the hospital there was a conversation between myself, the receptionist and two nurses, I would be ready to go home at 4pm and the driver said he would book that when he got back to the ambulance so that nothing would go wrong getting me home.
The booking system and discussion went OK and they were happy to go ahead even though I hadn’t managed the final liter, apparently it is common for patient with a combination of my problems and the meds that I take. It would have been nice to know as I wouldn’t have been worrying since the night before. The final thing was for a line to be put in and we were off. She prodded around several times on a vein that I have had loads of lines with no problems in the past, but at last she was happy even though I told her it was hurting, but we went of to theater. The doctor now warned me that with the high level of medication that I am on, meant that what they were going to give me might have little to no effect. He took a syringe of the painkiller they give and put it into my arm and then stopped. There was a lump under my skin, the line wasn’t in my nerve, and the drug was just under my skin. New line into the other arm and they gave me the sedative, they could do nothing about the pain meds as where they were could mean they would take hours or minute, they didn’t know. I don’t think either had any effect at all on me, but the endoscopy was fine, just one area where they had a problem getting round but that was all.
The good news was they saw nothing to worry about and they took three biopsies to be on the safe side, so it looks as though it is as first thought just my MS. Back to the ward and 10 mins to rest then a rush to get my clothes on to be ready to go home. 4 o’clock came and went, at 4:15 the nurse phoned, there was no ambulance booked according to the operator but she would send one. Adam arrived on ward at just after 5, he took me out for a cigarette as I was a screaming point with all of it. Back on the ward again we waited, the ward should have been shut at 5 but they were all still there because of me, arrangement had been made for my to go to another ward to wait there but as we were about to move, an ambulance arrived, but one that didn’t have a climber. Although it is all clear on their system that I am disabled and need a climber they had been sent to assess the situation. All of us Nurses included exploded at them, all followed by apologizes as it wasn’t their fault. The discussion went back and forward and we were taken to ward one, by now the clock was ticking toward my needing my next round of meds, they aren’t the kind of drugs they would hand out either as they would all have needed a doctor approval, that would take hours.
Another half an hour of waiting, the same crew reappeared, they had been told to go right across Glasgow, at peek time, to pick up another ambulance which had a climber and come back for me. It would have taken them more than 2 hours to do so. They had taken the decision to just fetch me and take me home, carrying me up the stairs between them, something that shouldn’t have been done in case they injured themselves. They clearly had seen the state I was in and what ever the nurses said to them about how I was, had made them realize it wasn’t right to keep me there any longer. As we were leaving one of the Nurses was still there and she was about to put a complaint in herself, as the whole thing was just one big mess that should never of happened.
If I had been a fit person who isn’t adversely effected by stress and who hadn’t found the past 3 days without food and horrid stuff to drink and didn’t have enough to put up with without treatment like this, well maybe that wouldn’t have mattered, but if I was, I wouldn’t have needed their help at all. I almost didn’t get the endoscopy at all if the ambulance had been another half hour, it just wouldn’t have happened and I would have had to start all over, getting an appointment starving and everything else. We all know there has to be cutbacks, but if cutting means that patients don’t get treatments done when needed, and ill people are stressed into being worse, the cuts they have made are back firing, as it would have cost far more to rearrange not to mention increasing the waiting list.
Today, I am tired and I am feeling at the worst I have in the last few months, and all because of an ineffective ambulance service, who ever is in charge clearly isn’t getting it right!