What would be your message for staff?

I think my first message would just be thank you. That’s the first thing. Just thank you for fighting so hard. I think my other message would be…because I know how hard it is for them, there’s a story called the Starfish Story. It’s a very short one and it’s my message for all nurses is, there was a boy walking along the beach. And a man was following him, and the man saw this boy bending down every so often. And the beach was absolutely littered with starfish, and they were going to die because the sun was coming up. And every now and again, the boy would bend down, pick up a starfish and throw it back into water, where it would be safe.

And the man was really puzzled by this and eventually he caught the boy up and he said to him, what are you doing? And the boy said, I’m throwing the starfish back because otherwise they’re going to die. And the man said, but there’s thousands of starfish on this beach, you can’t make any difference. And the boy bent down, picked a starfish up, threw it back and said, I made a difference to that one.

And that’s what I want the nurses to know. They made a difference to this one. They can’t…they just can’t save everyone because it’s such an impossible situation. And they can’t do everything for every patient. But all the nurses and healthcare assistants and doctors and physios and OTs, everyone in the hospital made a difference to me in a positive way at some point. And I am so grateful for that.

But I treated all of my time in rehab as rehab. So all the time I was on the ward, I was trying to do things, so things like making a cup of tea but also doing my washing and making my bed. Once I cottoned onto the fact that beds were changed on a particular day, I used to say to the nurse, right, I’ll strip the bed, because I could do that with my stumps. And then for the last three or four weeks, I would make my bed myself. And it might take me two or three hours but I would do it and I’d be blooming proud of having done it. And I said, but I’m going to want to do this at home, so I might as well practice now.

And it was all like that. You know, we had a gardening group and I’d go out and try and do a bit of gardening and find out which bits could I do and which bits couldn’t I do, yet. And it was really good. And we…a group of us decided we wanted to sand down some of the benches because they were in a sorry state. So we got permission and they got us some sandpaper and some sandpaper blocks and I managed to sand, you know, with my stumps. I put a sock on because otherwise it hurt my stump and I sanded parts of the bench. Yeah, and it was all things like that that you could do that I did do because I wanted to and I wanted to improve.

Yeah, appreciate the staff, you know. And that’s not just people who have been in ICU. I think generally, patients don’t realise just how difficult it is being in hospital. And particularly I think if you’re in ICU at the moment and you see so many people die. And I really picked that up from the number of ICU staff who wanted to come and see me because I was their miracle, I was their one who had survived against the odds. And that gave them hope, I think. So, I think for patients, yeah, appreciate the staff, be grateful for what they’re doing. Because even if you think they’re doing a rubbish job, 99 per cent of the time they’re doing the very best they can. And even when they’re not doing the very best they can, they’re doing their job, you know. Some people are overdoing their job. I think I would say 90 per cent of the staff I worked with are doing more than they should…could…than would be reasonably expected for what they’re paid.

I remember asking a nurse to take the gloves off my hands because I thought I had black gloves on. And I remember them telling me, no, those are your hands. Now I thought that happened on the ward but looking at my notes, that actually happened in ICU. And it was the day after that that the doctors told me that my hands and feet had to be amputated.

Now apparently, I was very upset. I don’t remember that. I remember being told again on the ward, or maybe this was down in ICU, I remember being told that my hands and feet were going to be amputated. And I had huge peace about it. Now there were lots of people praying for me. There were people praying for me actually all around the world, it was quite amazing. Because I am a Christian and my close friend heard about it and she basically mobilised a whole prayer team. And when they were going to withdraw care because I was so ill, she got people praying all through the day and night. And that’s when I turned the corner.

And I really do know that that prayer carried me. I believe that’s one of the things that enabled me to turn the corner, that huge outpouring of concentrated prayer, you know. Another friend recently contacted me to pray that…to tell me that when my pastor had told them that the hospital were going to turn the machines off, she prayed for me all night that night. And it’s just incredible, it really is. I know that after they heard, families from the school where I teach, some of them who are Christians were praying for me and got their churches praying for me. I can see a world tour coming on where I just go and visit all these churches to say thank you.

There were some nurses and some healthcare assistants who were more dedicated than others. And they’re the ones who really made an impact and they’re the ones who really treated me as an individual, who would come running when my bell went because I haven’t got an emergency bell, I’d only got a buzzer because that was all they could attach. They had to attach a special button that I could press because obviously I couldn’t press a normal call bell. But they would come running to me, even if I wasn’t one of their patients if they heard my bell go. Because they knew a) I’d only call if I needed something and b) it might be an emergency, because I hadn’t got the emergency bell to push.

The nurse or the healthcare assistant who brought me in some chocolate pastries because I wasn’t enjoying breakfasts and I needed to gain weight. And she’d made them herself at home. The nurses who clubbed together to buy me something on my birthday. And the clerk who got a neighbour to make me a cake for my birthday because I was in hospital for my birthday. The healthcare assistant who sat with me and went through my cards when I was feeling particularly low, to cheer me up. The critical care team who would always pop in just for a social visit, just to say hello at the end of their shift.

The junior doctors, one of whom wrote out all my meds for me because I didn’t know what I was taking. And she wrote them all out and explained them all to me. And another junior doctor who’d been to the rehab centre that I was at and talked to me about what it was like, because I had no idea what it would be like. And he talked to me about the buildings.

Those are the people who really made a difference, the ones who saw me as individual. There were some to whom I was just another patient and just a person they were looking after for that day. But, you know, you can see it. The doctor from critical care who admitted me and also saw me off, he was on duty, he was looking after me the day I went up to the ward, who wrote on the notes…instead of writing all the summary of care, wrote, this patient is well-known to me. And he came up to see me and he told me that the reason he and the team had fought for me is because when they were bringing me to critical care, he’d asked me, is there anything you do or don’t want me to do for you. And I said, I trust you to do the right thing for me. And he said, that had pushed them to do everything they could for me. And he saw me as an individual.

There were probably only two. There was a doctor who made me cry and shouted at me because I’d been told to contact critical care outreach if I needed help. And there was a nurse who needed to suction my tracheotomy and this must have been very early on in my stay. And I was really scared because I knew she hadn’t done it before and I asked for someone from critical care to come up, having been told by the previous doctor to call if I needed help. And the doctor who came up shouted at me and told me I shouldn’t have done that. And that really upset me. And he had no understanding of how it felt to be suctioned and some of the nurses had no understanding of how terrifying it was, and they occasionally went too deep one time, that really upset me.

And there were a couple of healthcare assistants who talked negatively about other patients in my hearing. And that upset me because if they were doing it about other patients, were they doing it about me as well. And they were talking about patients who had dementia and saying how horrible it was looking after them and how they came using their call bell.

And a really bad point was on my last day when they transferred me from the single room I’d been in onto a ward with dementia patients, onto a bay with dementia patients, because they needed my bed. And that was horrible because it was my last night, I was already quite uptight and they just…I had to pack up everything and move onto a four-bedded bay with three dementia patients. And that was horrible. That nearly broke me because it was…yeah, it was just awful. And actually, to be fair, the ward manager when she came back, was furious they’d done that. They’d done it on a day she wasn’t there and she was absolutely livid. But apart from that, it’s just a huge thank you because they were amazing and they bent over backwards for me.

And do you remember your first day in ICU?

No, I don’t consciously remember anything about ICU. Except for a few scattered memories and some that I’ve only been able to piece into the timeline of them happening while I was in intensive care since I read my medical notes. So I had a memory of disembodied white heads bending over me, which I now know was the nurses and it was when I was coming out of sedation hold. And they oriented me, so they’d say, Caroline, Caroline, open your eyes, it’s Wednesday and you’re in…and all I remember of that was hospital. And then they would say, we’re just going to. And they’d do something and it would really hurt and they’d say, oh, I’m sorry, and then it would all go black again. And I can remember the third or fourth time that happening, waking up and thinking, oh, no, not again.

Do you know what it was, the interventions that they did at those points in time?

Yeah, it was when they were doing sedation hold, I know that they were trying to get me to open my eyes. I mean, I was still intubated, I had a tracheotomy at that point. And I remember that they were trying…I was told that they were trying to let me know where I was and see if I would respond to commands. Because at that point, they didn’t know how badly injured I was, how bad my brain was affected.

Oh, and I’ve also got my hospital notes now and I’ve gone right through all of those. And that’s been really helpful. I was a bit…I was hoping to go through them at the hospital with somebody, but of course Covid, wasn’t possible. And unfortunately, they didn’t keep a diary, a patient diary. They usually do, but because of Covid, they were so stretched they didn’t keep one. And that I really do regret because I think that would have helped me hugely.

What would be in those diaries?

It’s patient…a nurse really writing about what the patient has done and how the patient has been that day. So Michael Rosen’s got one and he’s putting out a book based on it. And the nurses basically write the times you did the first thing. So they might write, yeah, you breathed on your own for an hour today, or you were very upset about this today. And it’s like a diary that you might keep. It’s a bit like the blog I keep really of big moments and it would have been nice to have that.

Going through the notes was difficult in many ways because they’re so jumbled. So you get all the nurses’ notes together and all the doctors’ notes together, it’s all on computer file, and all the…what other notes, all the notes from the ward from the nurses and then all the hospital tests together. So you have to sort of merge all of those. And then a lot of them are scanned in reverse order because clearly, obviously they put the latest one on top. And then they’re split between the computer files as well, so file one will end halfway through one set of notes and then the next bit might be in file two.

So I made a sort of timeline of it and that really helped me and really brought home to me how ill I was, you know. Seeing that I was put on a DNAR on my second day and it would have been the first day but they hadn’t had chance to discuss it with my husband. And seeing the doctors writing, I think this poor woman is likely to lose all four limbs, if she survives. And it is looking very unlikely or the future looks very bleak, this patient will probably not survive, you know, in complete organ failure. That’s…yeah, that’s quite a shock. But it was good because it did give me a timeline. It also showed me that I was having conversations with people and meeting people that I have no recollection of whatsoever. And that was quite difficult.

The DNAR, is that something that you still have now or…?

No, it’s a…

That’s been undone?

Do not attempt resuscitation and it was removed…they said initially it would be on me for the entire of my stay in hospital, which shows that they didn’t expect me to survive. But when I moved up to the ward, that was when it was rescinded.

I was shocked by some of the numbers though, things like my white blood count. I had to go and look up all the ranges and seeing how high my white blood count was and how low my platelets were, that was…you know, when I saw what the normal range was, it was, oh, wow, I really was ill, wasn’t I. And I knew I was, but it really brought it home.

I knew quite a lot about Covid. Because of my asthma, I educated myself a lot. But of course, at the stage I got it, it was very new. I went through a phase of watching the news compulsively, so I was up to speed with all the facts and figures. Still quite surprised when I got it, but I knew what the path was, I knew what the symptoms were. I knew about 111, so I used it. I knew not to contact my GP unless I had to, so I did when I had to.

So about…it was the week before lockdown happened back in March 2020. We decided that we were going to…my husband and I were going to lock down. I have mild asthma and I was really worried about getting Covid. And the night before we decided to lock down, my husband went out. Unbeknown to us, at the event he went to, which was an open mic, he caught Covid. So three days after lockdown started, he became ill and two days after that, which would be about the 24th of March, I became ill with Covid.

And we were both really poorly. We had all the symptoms but of course at that time, they were doing the stay at home, you couldn’t get a test. So we did phone 111 and after about a fortnight of feeling really quite poorly, my husband and I both started to get better. But whereas he kept getting better, after a fortnight or so, so about a month after contracting Covid, I was starting to get worse again.

I got in touch with my GP practice and after a lot of trying out antibiotics and toing and froing, two paramedics came out, eventually my own GP phoned me back two days after I’d spoken to her, my main GP, and if she hadn’t done that, I believe I’d have been dead. I could only just climb down the stairs at that point. And when we got to the hospital, my husband went and got a wheelchair to take me in. I was taken through to A&E and the last thing I consciously remember was climbing on the bed in A&E. It turns out that I was overnight in an A&E ward with my breathing getting worse. They took me down to intensive care the next day.