Beware - photos you might not want to see!
Tuesday 21st November
Liz:
Having had another sleepless night in the reclining chair I was awake early enough to appreciate the beautiful sunrise. When I pulled up the blind and saw the splendour of the morning it made me exclaim out loud and I immediately felt tearful, but in a good way. I wanted John to see it, because it felt like it had been created for us, and to see if it would lift his spirits. So I took his oxygen tubes out of his nose, released the bed brakes and wheeled him as far as I could so he could see about half of it. I'm not sure he appreciated it as much as I hoped. Later on Nigel showed us his photo of the sunrise at our house - gorgeous.
As John dozed again I watched the seagulls wheel round under the carpark floodlights, free and carefree, and thought how beautiful they looked.
Nigel called in to say hi on his way back down to the Midlands, and stayed a good amount of time, which John enjoyed. It allowed me to go and collect the kids without leaving him on his own. And on the way back I picked him up a coke - not allowed, but what the hell, it's what he wanted and we had given up caring by this point. My parents also then turned up and said hello to John for a bit as well.
Suddenly, and we credit the fizzy coke with this, the stoma began to gurgle! Nothing came out of it, but there were definite noises...and noises were a good thing! It meant things were passing along the bowel, which we had all been convinced was not going to happen.
Big news then as John was finally allowed to get out of bed and into the reclining chair! The physio arrived and taught John how to carefully get out of bed by not putting too much stress on his stomach muscles and damaging his delicate stitches. He was dressed in proper pyjamas, rather than the flattering hospital gown, so that when the kids turned up he would look and feel better.
And then, the big surprise which I hoped would really bring him up and make him feel more positive - Martin and Sarah arrived. They had pretty much jumped in the car as soon as they had found out the news, and driven from Devon , dropping the kids in Warwickshire with Sarah's mum and carrying on up to the Royal Inverclyde to see John. They were great visitors - just as they always were with John, joking around, winding him up, telling him he looked like crap. We played Cluedo, but mostly just chatted and laughed - it was wonderful.
Eventually I dropped the kids back at the hotel and picked up a curry from a local restaurant, the Taj Mahal, for dinner. It was really blooming good, but I just didn't have the appetite for it all. The naan bread was so garlicky and huge, and the curry was delicious, and just what I needed after surviving the last few days on toast and tea.
John:
Over the next few days the kids came in and we played games and chatted, Martin and Sarah drove the length of the country to see us for a couple of hours of 'banter' and the staff had to put up with my making light of the situation and trying to show them I could be discharged - or I'd walk out the door. Richard, my brother, together with his wife, Jenny, had also come to see us and he was able to stay a while which was good company.
I can't remember the sequence, but between Tuesday and Friday morning I was 'disconnected' in many ways:
Main arterial line into my neck - imagine a vampire bite with 5 teeth marks, actually stitches, holding a line directly into the artery
Two cannulas in my arms
Catheter - say no more - and critical to deflate the balloon fully that is in the bladder! Ouch
Tube up the nose and into the stomach - my least favorite - which Muhammed kindly pulled out for me with zero notice - best all round!
IV morphine pump which was replaced with oral morhpine
Arterial line into wrist - again - about 5 stitches holding this vampire in place
Subcutaneous lines
The staff were all truly amazing. Lord knows what they said about me in their patient review sessions, but the message had got through that although happy with the care, I did want to get home.
Wednesday 22nd November
Liz:
Just as we were getting ready to get our heads down at about 11pm the nurses came in and said we were being moved back to H North shortly. And at about midnight we were transported, at speed, back to the first side room John was in when he was admitted. Double bonus - we still had our own room and it meant that he was no longer high dependency!
Overnight I took the above photo. I always thought it was odd that people take photos of their loved ones in situations like this. But I found myself compelled to capture this middle of the night moment for several reasons:
Firstly - is it real? When you're in the middle of a nightmare like this it feels like you're beig swept through the chaos and that any minute now you'll wake up and it'll all be over. Well, here is the proof
Secondly it is a testament to the pain and the bravery. One day, hopefully, you'll think back on the time as a distant memory and it you'll have forgotten the trauma you experienced at the time. But you should be proud that you made it through and survived, and here is the reminder that you made it
Finally, as a loved one, you suddenly start to wonder whether it could it be the last photo. And you fear that you will be left alone, suddenly, and the last photo might have been a week ago or a month ago and you find yourself desperate for one last memory, even though it is a terrible memory (should it be your last), and you feel the need to capture that moment just in case it's your last chance
Richard, John's brother, and Jenny (his wife) called in to see John in the morning, and I met up with them in the cafe at about 9am to update them on everything that had happened. I left them to go up to see John, whilst I went to the hotel to pick the kids up, have a decent breakfast and a shower. It was a stormy day and I took some video of the choppy Clyde view from the kids' hotel, and driving rain, to show John.
Later on Dr Chung came round and optimistically said of course nothing is coming through your stoma - it's all coming back through your nasogastric tube. So, what we are going to do is put a bung in the end of the tube and see what happens. So that's what we did. John was given a couple of nutritional drinks to have, and then it was a waiting game. But, the stoma had continued to be active with gasses passing through, so we were quietly optimistic but trying not to get too overexcited.
The kids had a couple of hours with John and then Amber drove herself, Charlotte and Richard back to your house for dinner and to decompress with Mum and Dad for a day until we knew what was happening about getting out of there.
Later that evening the nurses finally came round and whipped out the catheter, which was a huge relief, and now he could prove to them that his bladder was going to work properly, and that he was able to take in enough fluids through drinking alone, rather than from the fluid drips. Just another hurdle to jump before getting home. And, the best thing that day was that we were able to snuggle up on the bed together, me spooning, and put my arm round him (carefully), while we watched a film. It was lovely.
My final thought for this post is how difficult it is to have a normal conversation after you've found yourself facing death. It turns out that death is everywhere, it's just that you aren't looking for it. But all of sudden I noticed it in casual sayings, news articles, simple poetry and even instagram jokes. It made talking just that little bit harder because you find yourself avoiding certain things, or stopping half way through reading something when it takes a dark turn. It's amazing how many times it pops into the conversation and brings the mood down. But you soon learn to work round it and be more sensitive.
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