And so we reach rock bottom - well done if you're still reading! I promise the next posts will turn a corner...
Monday 20th November
Liz:
At 8am I rang Neil, my boss, to let him know what was going on, and that I wasn't able to reliably do any work for Fox, indefinitely, as we just didn't know how things were going to progress. He was really good, and said it was not important, comparitively, and not to worry.
John sent me a photo of his morning view from the hospital window, asked me to bring a charger for his headphones, told me to take my time walking with Heather and not to rush over. All seemed fine.
I walked with our lovely neighbour, Heather, at 9am for about an hour, just down the road and back. She is brilliant - understanding (her nursing background helps), reassuring me that everything John and I were feeling was entirely normal and understandable and perfectly OK. She gave me a hug several times along the walk. I tried not to cry, but couldn't do it. We bumped into our neighbour from the other side and had a quick, awkward chat, during which my phone rang and it was Phil from work. I decided to take it because I like Phil and if he needed work related help it was the right thing to do. The first time he asked if I was OK I thought I had nailed it, but he asked again, and all I could say, very wobbly, was that's the wrong question to ask, Phil! I didn't have it in me to go through it again and just asked him to ask Neil.
John:
Sunday night into Monday was even worse than Saturday. Constant pain and moprhine not taking the edge of it. I just wanted to die and genuinely prayed for the end to come and be swift. In the morning I needed Liz to hear it from me and the consultant that things were bad, really bad.
When I'd texted Liz in the morning, I asked her to bring forwards the kids' visit. I didn't say how or when, I just knew that at that point in time, Friday was too far away - I honestly could not see a way to Friday - no way. I was likely to be declining rapidly and if the kids didn't come soon, they wouldn't see 'dad' just someone being kept alive by drugs.
If I was going to die imminently, I wanted to get out - that was my objective - to my home, my view, my family and cats in a peaceful surrounding.
Liz:
Just as I was about to set off for the hospital John asked me to bring Mum with me, for support. This frightened me - the doctor had done the rounds and there must be bad news. Mum wasn't dressed yet, so I just jumped straight in the car and got going - I couldn't wait a second. I felt guilty for dawdling this morning and not going straight to him. And just as I got to the main road another text came in. I thought I better pull over and check it and it said please get the kids here ASAP. I asked if I had to talk to them now or if I could do it in an hour and a half when I arrived. He said it could wait, so there was some level of relief there.
While the ferry crossed to Greenock I thought about how to get the kids here as fast as possible. I could ask them to try and move their flights, or book new flights, but that would take time. And I didn't want them to drive in a state of heightened emotions and have an accident. My options boiled down to calling Nigel, John's good friend and colleague, who had previously (hopefully genuinely) offered to bring the kids here. He didn't pick up. I texted him and watched the screen to see if he read it. It hadn't been picked up by the time I got to the hospital, so I decided this was something Mark could help me with - I sent him a text. He replied straight away to say leave it with him, he didn't bat an eye at Nigel taking 2 days out of work to do us this favour.
Nigel called me a few minutes later to say yes, of course! John really does have some incredible friends, and Nigel bringing the kids up for him was the best gift anyone could ever give him. I texted both the girls. Charlotte said she would go straight home to grab an overnight bag. I texted Nigel Amber's work address, Charlotte's home address and Amber's home address so she could also grab a bag, and then also the hospital address and some traffic info from a quick Google check.
I arrived at the hospital at 11.30am and found John sore and miserable, clicking his morphine button a lot. He told me that he felt he had been through enough, that you wouldn't do this to your pet, that he was trapped and it was cruel, and that he wanted to withdraw all treatment and for it to be over. It hurt. It hurt because I hated seeing him hurting. And it hurt because it meant he didn't want to be with me any more - he was giving up.
Soon the nurses came round to do John's bed bath (apparently he had his bottom spanked the day before) and I was sent out to the corridor. While I was waiting another of the nurses came to ask me if Mr Alwahid had spoken to me, and said he specifically wanted to see me. She led me to the relative's room yet again. The second I was through the door I burst into tears - I just did not know what was coming next. But Mr Alwahid was not on the ward and so she said she would come and give me a signal when he arrived - all very deceptive. So, when she asked me if we needed anything that was my cue to 'nip to the loo'.
The news was devastating. Ms Brown was back with us, and Mr Alwahid said that the stoma just wasn't working. Nothing was coming through; the water John was sipping, and the bile, was all being regurgitated through the naso-gastric tube. And that couldn't go on indefinitely. He said that brought John's time left down to about a week. Seven precious days. I asked if we could have some privacy to say what we needed to say to each other without having to listen to other patients throwing up and moaning. He asked me about a DNR, and I knew that John would want it placing on his notes, so I agreed. And he said make a will, quickly. I could see Ms Brown tearing up and was strangely touched by this.
Later on in the day John had a visit from the palliative care nurse, Elizabeth. She listened to him patiently, reassured him that she understood his request to be moved home to die, and said she would make everyone aware. She was lovely, and I could tell that John felt better to have been listened to, and understood. I was grateful to her for that.
John:
The hospital were as accomodating as they could have been and I was moved back to the private room to give us some privacy to process what was going on. There was a lot to talk about - emotionally, practically and very little time and energy to get through it all. Liz is a very capable and practical person, but as in most relationships, there's a division of household tasks and I wanted to make sure that whatever happened next, Liz wouldn't be over burdened with a fast learning curve of the daily crap we all have to do.
Liz:
I contacted a Scottish solicitor to discuss writing us new wills and got that in progress, and contacted AXA, with difficulty, to see if John's private healthcare could get him transferred to a hospice, or even home with palliative care. They were useless, offering only £100 per night spent in hospital, over a certian number of nights - it was insulting.
John and I shared some thoughts and feelings with each other - things we had to write down because we were too tearful to say them - things we needed each other to know before it was too late.
He had decided to take the inflatable compression socks off - what was the point?! This meant that, despite the ban from sitting on patient beds, I could curl up at the foot and rest my head on his leg (one of the few places free of wires and lines), feel his warmth and the slack skin where the muscle had already started to waste. But it was something I needed - to be closer than hand holding. I needed to remember every detail of him and soak up as much as I could while I still had the chance, becasue soon I wouldn't be able to. I just couldn't comprehend a time when he wouldn't be there - I wasn't ready to say goodbye.
John:
Later in the day, the kids arrived having been swept up by Nigel, bundled in a car and driven 7 hours up the road. I don't think they had much inkling of what was going on, so they were literally hit with the honest truth we knew at that time - with no warning. I think we got an hour of raw emotion and then an hour of UNO before we packed them off to a local hotel, and some time to start to process what was going on. It really was amazing to see them that day - whatever happened next I would have had a last goodbye with them whilst fully with it.
Liz:
Nigel brought kids up to the ward and said a quick hello to John, and John looked brighter to see him, for which I was very grateful. I pressured him to go back to our house, let Mum cook for him and get a good night sleep before heading back, and to call in and see John again in the morning for a longer chat.
John thoroughly enjoyed seeing the girls, playing a few games with them - a glimmer of normality in both activity and emotion. And when he was tired I took them down to the local hotel, with the promise of bringing him back some fresh orange juice - if he had only a few days left, then he might as well have some small pleasures along the way!
John asked me to read him psalm 23, and it felt like reading the last rites - I made it past the valley of the shadow of death, but couldn't get to the end, to the lines that mattered to him, to dwell in the house of the Lord forever. Then he was ready for sleep, but I couldn't - I didn't want to give up a single second to watch him and try to memorise his face, his stong hands. Instead I knelt on the floor by his bed and prayed as fiercly as I've ever prayed, for an absolute miracle, and somehow I felt some kind of lightness and strength from somewhere: I knew something had been communicated somehow. But the stoma stayed resolutely silent for now.
During the night he needed to listen to some quiet music to get through, but some of the songs had lyrics that just undid us. The Cars, Drive, broke me in ways music never had before - my 'who' was John, and always would be.
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