Letter from Treliske Fri 27-Oct-2017, how it all started
It’s nearly three weeks since the accident and I am just getting some limited use of my right hand for typing – although only just enough to write this paragraph. The rest of this letter was dictated to Teresa and subsequently edited by me, even slower than normal. That’s enough says my collarbone, my right arm is ready for a rest …
The first day, morning
I was up at 5.25am this morning, unlike the rest of the week when I’ve been up at about 5am. I filled Blossom with diesel at Tesco in PZ at 6.15am and with a full tank, headed off to Penryn.
As is usual at that time of day, the roads were nice and quiet. I pootled along the dual carriageway section of the A30 towards the Long Rock roundabout, at my usual 70 miles per hour (so, probably not ‘pootled’). I was in the right-hand lane because the left-hand lane turns left towards Crowlas and St. Ives.
I can’t be sure what happened next, but I slowed down for the roundabout, made sure there was nobody on it and that nobody was joining it from the right. On the road coming down from Crowlas, an ambulance had stopped and was waiting for me to finish going over the roundabout; nobody else was visible. As I crossed, I glimpsed a white blur coming down the A30 from Crowlas/St Ives, which I thought at the time was a Ford Transit but turns out was a Mercedes Sprinter. Despite the stationary ambulance, the driver obviously didn’t see me and didn’t slow down for the roundabout and T-boned me (that is, hit the passenger side of Blossom, my Landrover) with some force.
Oh *****, I thought, this is going to be messy, and I’m going to be late for work. I was more worried about being late for work than anything else.
Blossom started rotating anti-clockwise and was now travelling sideways, as well as forwards. Next she did her impersonation of a motorbike on two wheels. I’ve always thought motorbikes going around corners at high speed look incredibly dangerous at 45 degrees. I can confirm that Landrovers feel equally dangerous and scary at 45 degrees on two wheels.
After spending a few moments doing her motorbike impressions, Blossom completed her pirouette and landed on her right-hand side, and the world stopped moving.
Ouch, I thought. My shoulder hurts. The engine’s still running, better turn it off. I hope the ambulance crew is still there, they’d be very useful right now.
Yes, I really was that calm and logical.
Happily, they were still there and appeared shortly afterwards to talk to me through the windscreen, or at least the place where the windscreen have been – it having gone walkabout during the landing phase. Once we’d established I was still relatively in one piece, the ambulance crew and I worked out that it was safer for me to get out rather than remain lying inside Blossom; Blossom herself was lying in a pool of diesel.
That was easier said than done as I was still in my seat, my shoulder against the current bottom of Blossom (i.e. on the road), but what used to be the driver’s side. The only obvious way out was over the steering wheel and through the missing windscreen.
- I still had my seatbelt on.
- My legs were still down by the pedals, and Landrovers really don’t have much room in that area.
- I’m not exactly what you would call slim or short and the gap between the top of the steering wheel and the original roof of the Landrover, is very small.
- My shoulder hurt like hell and I couldn’t use my right arm to lever myself; more to the point, I was on my right-hand side with all my weight pressing down on it.
- So, as I usually do when presented with a problem, I worked out a solution. One of the ambulance crew undid my seatbelt, rescued my phone and handbag, and I made sure my handbag was nice and safe (well, you would want your handbag to be safe under those circumstances, wouldn’t you?); my phone was put in my handbag because I knew I was going to have to talk to Teresa and tell her what had happened.
One of the crew took my left hand and braced so I could pull against them, not them pull me (I needed to be in control, and do it my way). I then proceeded to try to get my legs out from under the steering wheel and over the top of it. If you’d asked me before, I’d have said that was impossible, but it’s quite surprising what you can do when you don’t have a choice. I got my feet through the windscreen and warned the crew that they were likely to ‘get an eyeful.’ I was told, ‘Don’t worry, we’ve seen it all before.’ Given I was wearing tights and a short dress, I’m not sure the view was one they’d seen that often. Anyway, I wriggled and pulled on the crew’s arm and got myself onto the ground outside without too much pain. I was now lying on my right-hand side on the road, my back against the bonnet, in a mixture of glass and diesel.
Stage one complete. …
The next challenge was to get me upright and to the ambulance. Fortunately, adrenalin and shock are wonderful things and whilst I couldn’t use my right arm, the pain was manageable (this didn’t last much longer). After a few minutes to recover, the ambulance crew helped pull me to an upright sitting position and, after another few minutes, to get vertical; with a little help on my left arm (because I wasn’t letting anyone near my right arm) I walked over to the ambulance and carefully, slowly and gingerly, climbed up the steps and sat on the bed. After another few minutes, with one paramedic bracing my hand and the other lifting my feet, I got to a sitting position.
I can’t tell you much of what happened next, but I know they checked me over, concluded I probably had a broken collarbone, but otherwise not badly injured. In chatting to them, it turns out they were five minutes from their depot at the end of a 12-hour night shift, so I was incredibly lucky they were there. More importantly, it was very clear that my health and condition were all that mattered to them; being late finishing their shift was irrelevant. I was aware of some discussion about a replacement ambulance to take me to hospital, there was talk of it coming from Helston and being at least half an hour away. At some point during all of this, I rang Teresa to let her know what had happened. I told her all I could and said that once I knew where they’d taken me, I’d let her know, and would she please contact work at 9am (this was about 6.50am).
Why did I worry about work? Simple, work has a process and the ‘rule’ is you ring in to report your absence; I was going to be absent and I needed them to know. Of course, they wouldn’t be worried about me obeying the rules after such an accident, but I NEED to follow rules and that’s the rule so that’s what had to happen. Teresa knows this and didn’t argue with me despite wanting to get straight in her car to be with me asap. Just because my needs don’t seem to make sense, it is important to accept they do to me. I was concerned all the time I was in casualty until Teresa confirmed to me that the office knew; if she’d decided it was unimportant, my stress levels would have rocketed.
Rules matter to an autistic like me and even at a time when common sense says, ‘don’t worry’, I will worry and the best thing to do is NOT to tell me not to worry, but to respect the worry even though it makes no sense (to you).
The ambulance crew decided they didn’t want to leave me sitting around waiting for the Helston ambulance and so, despite the fact that it added a long time to the end of their shift, they would take me direct to Treliske (Truro). I can’t remember how much I said to the crew, but I do know how much I appreciated the care they took, and the priority they gave to my health over any inconvenience to themselves.
At some point during all of this, the police arrived and asked a few questions, brought in a breathalyser, which was fine by me, except it was broken so they never actually used it. They got most of the details from the ambulance crew, so I really had no great contact with the police at the time.
I was offered morphine but as I dislike painkillers intensely, I declined; as it turned out, my blood pressure was far too low to be given morphine anyway. At the time, the pain wasn’t that bad, but they organised Entonox (also known as ‘gas and air’) in case I needed it. I didn’t feel I was about to give birth, and thought I’d be ok, but I said thank you anyway. However, during the drive to Treliske I was extremely grateful for the happy gas, it made an unpleasant journey comfortable.
Throughout all this, I kept Teresa up to date by texts, and I gather from her that on the local tv news there was a note that the Long Rock roundabout was blocked by an overturned vehicle. I’m not sure that’s how I’d really like to appear on television.
Treliske, like most A&Es, is incredibly overworked and is as notorious for ambulance crews having to wait to check people in as any other. Fortunately, at the time I was going, 7.30-ish, the ambulance only used their nee-naws once, that I remember, to move traffic out of the way, and I sailed straight into A&E on arrival. I did have to change beds from the ambulance one to a hospital (A&E) one, but I was still mobile enough at the time to be able to do that because I was still sitting up. They then wheeled me into A&E proper (Majors 1) and into a bay. There was various testing of blood pressure and temperature but by now the pain was starting to grow. There was a bit of assessment, I’m not sure by who, and I asked for something for the pain. I got paracetamol and ibuprofen.
Hmmm, I thought, when I broke my leg they thought that would be enough. It wasn’t then, and It was even less effective this time. I texted Teresa to tell her I was at Treliske, but the message didn’t seem to go, no signal, though it turns out signal came and went, and it did actually go. The consultant wanted an X-ray of my shoulder to confirm the broken collarbone and the X-ray department was nice and quiet at that time of day.
By now the pain was excessive, unbearable, and was laughing in the face of the paracetamol and ibuprofen. Fortunately, they could do the X-ray while I was still on the trolley and in my semi-seated position. They did however need me to lean forward while they put a plate behind my back; I found it necessary to express myself in Anglo Saxon at that point: not at the staff, they were incredibly helpful and understanding, but it was quite clear that me and pain were not going to be best buddies today, and I think pain took offense at that and wound the ratchet a bit tighter.
After this, I was wheeled back into the bay where I enthusiastically asked for some painkillers that would actually make a difference. The doctor came up after some time and said that wouldn’t be a problem as I clearly had a major injury!
It still took time for the painkiller to arrive and I heard a call-out for the ‘green key’ which I had deduced must be the key to the ‘fun medicines’ cabinet. When it did arrive, it was a cup of an odd-tasting but not unpleasant liquid. This was Oromorph, something I would get to know very well over the following days and me and Oromorph were definitely best buddies. The consultant told me that yes, my collarbone was broken, and they were pretty sure some ribs were as well, and there was some stuff they were not sure about, so they were going to do a chest X-ray.
The Oromorph was working wonders with the shoulder, but was doing absolutely nothing for my bottom which was in extreme pain because it’d had the rest of me lounging around on it in the same position for some hours. The chest X-ray was not long in coming and leaning forward for that plate wasn’t so difficult this time.
The verdict on the chest X-ray was that yes, there were four broken ribs, also on the righthand side (2, 3, 4 and 5 if anyone is interested) and the consultant said that he still wanted some more information as he wasn’t quite sure about some stuff and was going to organise a chest CT scan.
Oh joy, I thought, there is always a massive queue for the CT scanner, but it was still early in the day and I hoped it wouldn’t be too long. I have no idea what time it was at this stage, I’m pretty sure Teresa arrived about 10.00 (having left home immediately after speaking to the office) and I think I’d been waiting for nearly an hour up until then. During this time the pain had come back but I hadn’t seen the nurse and I didn’t want to bother anybody, I understood that they were all very busy. At five past nine I said to myself, I’ll wait until ten past nine and then I’ll press the buzzer to call for a nurse. I desperately hoped I wouldn’t have to, but the pain continued to get worse and I felt very alone. I had told Teresa not to rush over but I bitterly regretted it now. So, at 9.15 I did push the buzzer and asked the nurse to see if she could organise some more painkiller. My shoulder was in agony, my bottom was in agony, I just wanted somebody to turn out my lights.
Teresa arrived about 10.00 but the painkillers still hadn’t pitched up, so we pushed the button again, and again nobody turned up. After a while Teresa suggested she go and see if she could find somebody and I was really pleased she was there to help. At the time I was sure I had already asked her to, but it is quite likely I asked her ‘in my mind’ and expected her to mind-read (see theory of mind, a classic autistic problem). She found a different nurse who organised some more happy-juice, which was very welcome. I then asked the same nurse if it was possible to find out how much longer the CT scan would be, and she said she would. She returned a minute later with the porters ready to take me there and off to CT we went.
It was, as it happens, the same CT unit that I’d gone to with my smashed-up ankle five years ago, so at least it was familiar territory, something which, as an autistic, I found extremely reassuring. The CT people needed me to be lying on the CT bed and by this stage, even with the Oromorph, I couldn’t move my body, the pain was just too intense. And so, bless them, with the aid of a board and a sheet and nurse-power, they moved me from my bed to the CT scanner. Unfortunately, I had to be lying down for this and that really wasn’t any fun.
It turns out the CT was ‘with contrast’ which meant a canula was fitted to my left arm so that I could be injected at the right moment. Fortunately, I knew what contrast was, but I didn’t have any idea what it would feel like. They plumbed me in, organised me, and the scanner told me when I had to stop breathing, and then could breathe again. That was very hard to do, given the pain, lying still when you want to scream in agony is not easy. And so, two ‘sighting runs’ without contrast, each taking 15-20 seconds, then the final scan run. I could feel the contrast being injected (automatically) and it had an odd ‘taste’. I could also feel it in the area of my crotch, which was very strange and unexpected, but, apparently, quite normal.
And that was that…
They got me back onto my trolley, but left me much flatter. This took a lot of pressure off my bottom. For the next hour or so, that was the happiest my bottom was going to be. Even now (20 days later, at the time of editing) it is still not a very happy bunny, but I can at least move around a bit now.
I was wheeled back to A&E for the third time, but now I had Teresa with me and I felt so much less isolated and trapped. It wasn’t long before the consultant appeared again and said, yes you have a broken collarbone, yes you have four broken ribs…that was the good news. He didn’t say ‘that was the good news,’ but when he said ‘but’ it was clear there was bad news to come. The X-rays had revealed a growth on the kidney, enlarged lymph nodes in the lungs and (as it happens) the same shoulder that had the broken collarbone. Nobody mentioned the ‘C’ word but he said that they were getting someone down from oncology to see me. Now since oncology is the department that deals with cancer, it wasn’t difficult to add one and one and get two. At the time, I think, Teresa was somewhat in shock at the news (she says that’s an understatement) but my rational brain was fully in charge. This sounded to me like cancer with a number of secondary’s, which sounded like it was well-established and spreading. That was not a good prognosis to me. However, there was no emotion attached, just an “oh, ok, well now I know”.
As for the shoulder, as expected the treatment is to put on a sling, take painkillers, and put up with it. Or, ‘pain management’, as it’s known. The consultant said we’d be moved somewhere for that to take place, then left us with the curtain closed. We did then discuss the meanings of what he’d just told us and we both understood that it was worse than it sounded (if that’s possible).
Whilst, at this stage, I was in no fit state to do anything, I was metaphorically climbing the walls and just needed to get moving. I hadn’t actually done a wee yet and whilst I felt no need, I also didn’t fancy any of the possible ways of achieving this whilst still immobile. It’s a control thing…
It then occurred to me that the consultant was most likely neurotypical and thought we needed time to deal with the emotional shock he had delivered. Clearly he’s not dealt with this autistic before. There is no emotional shock (that may come later). Right now, I wanted facts and to resolve practical problems. Interestingly (and luckily for me), although Teresa is most definitely not autistic and did feel the emotional shock when then news was delivered, her own coping mechanism is to roll up her sleeves and focus on the practical stuff.
So, I asked Teresa to go and find someone so we could get on with sorting out my shoulder and ribs because that’s something we could be getting on with. She did; he did; and so came the next change of beds.
The first day, afternoon
I was wheeled from casualty to what I read as ‘The Clinical Depression Unit’ but was in fact the The Clinical Decision Unit. I was allocated to a room and we proceeded to the ‘how to get me from a casualty bed to a clinical decision unit bed’. This seemed to be overly complicated and confusing. My bed was wheeled into the room where their bed was and there wasn’t much space to move between them. Up until now, all transfers had been by ‘board and sheet’ as I was unable to get myself to a sitting position without significant pain. However, the staff in the CDU decided I was clearly making too much fuss and if they pushed and shoved me to a vertical position, I could transfer myself between the two beds. I was actually told, ‘We don’t pander to people in here…’ Personally, I would have liked a less assumptive approach (that I was being feeble, or a wimp) but my objective for this move was to get vertical and mobile so, what the heck, I thought…
I asked for some more Oromorph to help manage the pain and for one of the nurses to provide support to my left arm so I could pull myself up. Again, I don’t think this is how the staff wanted me to move but I knew what I needed. After a few test pulls, I got myself to a sitting position and yes, it did hurt! As I was sitting there, I became aware that I was about to faint – and I told them so. Again, I got the impression that I wasn’t doing things how they wanted things done, and that no I wasn’t going to faint, I was just making a fuss and they had no time for that…
But I did faint and the next thing I remember is pain in my right shoulder as I hit the bed and, as my legs were pushed back onto the bed, even more pain. Somehow it felt like the fainting was my fault, but I did warn them.
So, attempt number two and I got myself to a sitting position and told them to just wait and let me gather myself. Once gathered, I asked them to lower the bed so my feet could touch the floor, again I used one of the nurses as a bracing point, and pulled myself upright. I could now rotate 180 degrees and sit down on the other bed. After all, they were only about two feet apart.
The casualty bed was removed, a foam sling fitted, and I decided that lying down again was the last thing I wanted to do, I wanted to be up and moving. By now, the staff seemed to have decided that I wasn’t a wimp after all, and did know what I was doing. They got a chair for me to sit in and that’s where I settled for a while.
At no time in all of this did anyone display any understanding of the issues of hypo and hyper sensitivity (to pain) that autistics often have, despite me telling them that I was autistic – and despite the fact that a board in the corridor declared (with photos of the individuals concerned) that the hospital had an ‘autistism team’, however that’s for children. Apparently autistic adults don’t exist ☹.
In this area I feel that there is a need for more training and understanding. I could and did stand up for myself, but that’s not always the case and sometimes a wimp is actually a very brave person and a brave person may have no idea they are damaging themselves because they can’t feel the pain!
As for ‘processing delays’, I was lucky to have Teresa with me!
From the chair, I dictated to Teresa a number of text messages to be sent to various members of my family, so they knew what was happening. I then just wanted to start moving. Using Teresa’s shoulder for stability, I walked around the Casualty unit and for the next four hours, I did this over and over again. Every now and then I had a word with the nurses to try to find out what would be happening next. The original consultant had said that they had expected to keep me in overnight and would only let me go today if I was clearly mobile, eating and looking after myself – and the pain management was working, and maybe if oncology wanted me to, stay for some of their tests.
I declined a morphine pump (more powerful than the Oromorph) as that was something I could only use in the hospital and I wanted to prove that I could manage at home. We agreed that they would only give me the same drugs I would be taking at home for pain relief. So back and forth and back and forth I walked, initially with Teresa’s support, but after a couple of hours she fetched my stick from her car and I used that left-handed and did the walking on my own.
During my walks I was able to convince the casualty consultant and the nurses on the unit that the only reason I would need to stay was if oncology were able to do testing over the weekend. It took forever to get the confirmation that they wouldn’t but eventually we did get it (by about six pm) and I was primed for escape.
Hospitals and all that ‘stimulation’ (noise, activity, the need to communicate and process complicated issues) are not good places for autistics and getting out of there was very important to me.
The whole time I was there, every hour or so I was offered a cup of tea and a biscuit, both of which were very welcome. The same happened in the CDU except, apparently, I was considered an in-patient so was offered a sandwich for lunch and a selection from the menu for tea. During this time, no wee was apparent but around four p.m. I was mobile enough that I felt I should give it a go. I asked Teresa to come in with me to provide clothing support, which she duly did. The wee bit I could manage myself although it really wasn’t worth the effort, despite all that tea. I suspect my body was still in shock and the digestive system was on strike.
I was able to remove my tights now, they’d been laddered as I extricated myself from the ambulance, and I wanted them off. My legs were freshly waxed and I was happy to have them out and about.
At some point in the afternoon an oncology nurse came down to discuss what would happen next, which seemed to be a biopsy on Monday, if it wasn’t going to be over the weekend. Getting hard information out of them was nigh impossible.
Having been given the release, Teresa went off to collect the car and the nurse ran through the exit tests with me. They had been taking my blood pressure all day long and it had been bouncing around all over the place. When she checked it, it was too low to release me.
I was having none of this, so I went for a couple of quick walks up and down the corridors and we repeated the tests. I was now fine.
Was that altogether right? Given the way my blood pressure floats around, yes it was, and I was clearly completely mobile, coherent and stable on my feet.
We were given the discharge letter and the prescription for all the painkillers. Bizarrely, I couldn’t fulfil the prescription at the hospital because the patient pharmacy was closed!!! Fortunately, there is a 24-hour pharmacy at Boots in Hayle so we could call in there on our way home.
The first day, evening
It wasn’t a fun journey home. Teresa had to drive very slowly and carefully because I felt every bit of grit on the road and I was absolutely terrified of traffic and kept shouting ‘Stop,’ whenever I felt it was too close – ‘close’ meant I could see it, even if it was two miles away. I’m never a good passenger, but I was an appalling one that day and poor Teresa was in enough of a state with everything that had gone on, without me seeming to criticise everything she did during the journey.
But we made it home. What to do when we got there was an interesting conundrum as I needed to find a place to be comfortable and to sleep, and lying down was out of the question. In the end we nested cushions in one of the armchairs, set up a footstool, and I settled there.
At some point during the afternoon, Teresa had picked up a bottle of something for me to drink (Sprite) because I knew I was very dehydrated and I couldn’t face water. Once I’d sat down at home, I felt it likely I could be sick. Both of us having been through a bout of gastric flu only a couple of weeks previously, we were prepared and had medium and large sick bowls to hand. I opted for the medium. Whatever I had for tea that evening at the hospital, plus the sprite, plus whatever should have been turning into wee, but clearly hadn’t, came back up. And up. And up. The medium bowl was not big enough. But, better out than in and I felt a lot better afterwards. That was the first and last time I was sick.
I really don’t remember much of that night, or indeed the following two days. I know Teresa slept on the sofa, for two reasons. One, so that she could help me whenever I needed help because the pain continued to be quite severe and two, she didn’t think she’d be able to sleep upstairs in our bed while I was downstairs like this. Indeed, that was the case for the next two weeks until I was able to sleep on the sofa instead of a chair. My nights were punctuated by between 30 minutes and 2 hours of sleep, and being woken up by the pain in my coccyx, all the while with the television in the background. Teresa hates having the television on at bedtime, the flickering lights and the sound disturb her sleep, but I find it distracts me and stops me worrying about the fact that I’m not asleep. The truth is, I spent that night and the following two days and nights drifting in and out of sleep, being awake and alert, but about as much use as a wet dishrag.
There was no gender recognition at the hospital, and a lot of ’Mr’ Bottomley, they just never asked – you’d think the floral frock (well, the accident did happen on Floral Friday) would be a hint that they needed to be a bit careful…
Nor was there any understanding as to how differently autistics experience pain, noise, lights, smells and all the rest that is part and parcel of a busy hospital.
I was incredibly lucky to have Teresa with me most of the time and to be strong willed and self-aware enough to cope. But, I’d have liked to have seen more awareness and I will try and follow up with the hospital to see if there is some practical training that can be done.
That said, I cannot praise highly enough the members of the NHS I encountered, from the ambulance crew onwards. Sometimes it took a while for staff to get used to the idea that I knew what I was doing in terms of deciding what I needed, but they all did eventually and, despite seeming to be unaware of my needs as an autistic, they respected me as a human being albeit, I suspect, more strange than the average patient ???? and I am very grateful for the care I received from an NHS that is under far too much pressure.
That was the first day, once the weekend was over we were scheduled to head back to Treliske for the Biopsy, but that will need to keep for another letter, even with left handed typing and a hand held mouse, writing is very tiring, despite having dictated the bulk of it.