Tits stayed at home for the bank holiday weekend, which was fantastic. We had expected her air mattress, commode and a ramp to be delivered on Thursday or Friday but nothing showed up. Anna (her section Sister) had spent all morning on Wednesday talking to Essex social services and the district nurses but when I rang the medical equipment centre they had no delivery date! Arranged for the commode and ramp to be delivered yesterday but still nothing – I imagine we’ll have to get used to this lost communication between different parts of the state/county sections. When I got to the hospital on Friday for a dressing change (meant to be at 2 but happened at 6) we asked Lourdes to chase up the air mattress. She tried several times and finally at five spoke to the district nurse, Sue Brackenbury, who had no idea that Tits was coming home this weekend – the whole farce of no air mattress meant Tits was in tears for most of the day since without an air mattress she couldn’t come home. Addenbrookes blamed the surgery, the surgery blamed Addenbrookes. I spoke to Sue and explained the situation (she didn’t even really know what Tits medical condition was) and she said she’d do whatever she could to arrange one even if she had to take it from under someone who didn’t need it as much. Within an hour she delivered a Pegasus mattress, tested it and left emergency numbers with Mum at home. The district nurse on duty called on Sunday to make sure I hadn’t killed Tits and Sue rang on Monday to re-check and re-emphasise that if we needed anything at anytime to call them without hesitation. It’s reassuring to know that the help out will be as good as in.

I went to collect Tits at 12, supposedly she’d be back on the ward after dialysis then – of course she wasn’t – she got back at about half past. Then had to have her arm dressing change and then, as we were about to leave, remembered that she needed flushing (flushing is having some fluid put through the Tenckoff line and then drained to make sure that the CAPD process is working), so we did that and then, finally, left.

We stopped at Waitrose, Tits stays in the car whilst I do a quick shop for weekend essentials (extra thin bacon and Tic Tacs + more whisky for me) and then go via Florrie to pick up Bodens stuff she’d ordered for her. Got home at about 3 and had lunch. For the chair to fit under the table we used 4 Wilbur Smith hardbacks and 4 Dick Francis paperbacks to get the perfect height for her legs to go under, it meant that she could sit square on rather than sideways to the table, the rest of us felt like 11 year olds eating at a big table and the children need 4 cushions but it’s still up on stilts.

Kate and I moved sofas around and brought Jack’s bed downstairs into the sitting room in the morning. After lunch I transferred her to the bed. Mark Curtis arrived at 4 (I’d forgotten he was coming) and shortly afterwards Angela Quain (forgotten also). Lots of tears from all and long chats ensured. Had supper and then Mum, Dad & Kate went to bed at about 10, I think they went early to give us time to ourselves. We sat and talked until 1.30, far too late for her and stupid of me to do it. I was also stupid in that I told her that I thought I might have to give up work, which, understandably, upset her – and me.

Got her up on Sunday but after breakfast she went back to bed – 1.30 wasn’t a good idea – and spent the rest of the weekend there. That afternoon she needed the bedpan, which to my surprise I survived and, better, didn’t really mind. Awful for her though but it was one of my big fears and I was amazed at how easy it was – I suppose Felix helps.

Went back on Monday at 3 for dressing change, which was awful, really depressing, and lots more tears. Felt like going back to school after the summer holidays even down to a sort of homesickness when I got home and she wasn’t here. The dressing change was terrible left leg was ok but the right was very wet and unbelievably painful despite the diamorphine. The next change is tomorrow and plastics will be there to check it, meanwhile they’ve taken a swab to check it’s not infected.

Best news of the weekend was that Florrie has had 2 offers on Ickleton and that they are bidding against each other. Today she’s accepted an offer well over the asking price so its all systems go.

Thursday 05th Sept (Day 144)

Last Tuesday went back to work after 2 weeks off straight into a 2 day meeting followed by a Project Sweden phone conference with Sweden, US, Canada and Ireland going over ground that we had covered months ago. Very stressful knowing I had 2 weeks worth of work to catch up on and had no time to do it. Stress was made worse by the dressing change on Wednesday, when I got to the hospital Florrie was still having started the dressing change at 4pm the right leg had taken 3 hours to change and it was as bad as on Monday. Florrie was visibly shaken and I stayed for the left leg, Anna kindly cancelling meeting up with friends. It didn’t take as long but I didn’t leave until 8.30. Sarah Alford did the change and was brilliant but everyone involved were emotionally exhausted by the end. The pain is unbearable for her and the anticipation of pain makes it even worse.

We still hoped she would be able to come out on Monday but I think even then I began to realise it was unlikely she would be released until the legs were at least a little better i.e. the changes weren’t quite so awful.

On Friday nausea and vomiting returned, Tits felt like shit and didn’t think that she was up to coming out for the weekend, we decided to wait until Saturday before making a decision bearing in mind that she had dialysis and a change tomorrow. The psychological effects of waiting and anticipating the change is almost, but not quite, worse than the change itself. Anyway the hospital bed wasn’t delivered so she’d be on Jack’s bed again which isn’t ideal but does work.

Got up to Addenbrookes on Saturday at about 12, she was still in dialysis so went down there – for some reason that annoys me almost more than anything else, getting up to C5 and then having to traipse down to dialysis, waiting for them to let you in (you always wait at least 5 minutes until they buzz you in) – chatted for a while, mainly about the change, but also about social services, home care, the bed not being delivered and coming home on Monday and the effects that would have.

When we got back to C5 Ros said she’d do the change as soon as she’d had lunch. We started at 2 and it was even worse than before. The right leg again was terrible – I can’t, and don’t want to, write down how truly painful it was for all of us to go through. We ended up with Nisha helping and all of us agreeing that this couldn’t continue – Tits had 12.5mg of diamorphine and couldn’t have anymore and it didn’t begin to touch the pain. They couldn’t give her any more morphine so we put the left leg off until Sunday. The afternoon was bad but pain is easily forgotten, for me the worst part was that we wouldn’t have her home for the weekend and that it was dawning on me that there was no way Addenbrookes would let her out on Monday.

Went to church on Sunday and the pub afterwards with John Latham and John X from Carver Barracks. Felt like I’d moved back a month or two but told everyone that Tits was coming out on Monday and the mood in church was unbelievably positive. Fr John incorporated us into his homily, which was about bearing your cross and choosing your reaction to events, most of the end was about how the Robarts’ were dealing with their troubles and facing the day to day trials – very embarrassing but very flattering at the same time; it’s odd how you know you are doing a good job of muddling through but that when people comment on it the stiff upper lip comes out and you self denigrate your achievements. If I am honest I think we’ve all coped with, and faced things that we could never have imagined we’d be asked to think about, let alone deal with, in a way that few couples could survive. I know that the hard part is coming when she is released but know that the strength of our love and, perhaps more importantly, what we have been through over the last 5 months will keep us going. I worry daily about the effect that this will have on the children, particularly William, but feel I have coped and managed the worst parts as well as anyone could and have been there for them whenever they’ve needed me – I hope I am right.