The week before last she had some further grafts on the legs to patch small bits that hadn’t taken. She was supposed to be done on Thursday but as usual didn’t go down to theatre until 8.45pm on Friday 13th. She then didn’t get back from recovery until 12.45am. Didn’t think she’d make it out for the weekend but she had dialysis in the morning and I collected her in the afternoon. Charles Burgoyne and Freddy came down on Saturday and stayed the night. Charles didn’t know how to deal with it all and seemed fairly stressed out by it all, particularly when I cooked him steak, 2 veg and potatoes for supper (Rosie made Tits spaghetti Bolognese). We watched Casualty which had a car accident victim having a roadside leg amputation which he was horrified about! Dudgeons came with lunch on Sunday and Ruth/Caroline’s sponsored walk took place. Dropped Rosie and Kitty off at The Plough and you’ve never seen so many people. Rosie was in a panic thinking we were going to be late and the D’s hadn’t arrived so had to leave without Kitty and collect her by the roadside after we passed each other. They raised £620 which was fairly amazing at £20 a family suggested donation.

When she saw Mr Malata & Mr Grant on Monday they were horrified she’d been out for the weekend but since they didn’t say she couldn’t so it was their fault. GA for dressing change on Wednesday again late, didn’t go down until 8pmish. The NBM all day is really hitting her badly, she becomes very emotional and is worn out by the wait. On Thursday Mr Grant told the nurses he was very worried that she was malnourished to which the only answer is operate on her when you say rather than not letting her eat for 2 days at a time. She is skeletal again and needs to come home so she can eat more. Dressing change announced for Saturday morning late on Friday afternoon but she hoped to come home.

We all went to see her on Saturday lunchtime (apart from Jack who was away at a cub family camp with the Bidwells’) but when we got there she was in so much pain we went away again. She said it was the most pain she’s suffered so far and obviously didn’t come out.

Sunday was the Countryside march, which we went on meeting up with Charles and George and the Dudgeons’ (Ann & George met us as well). Rosie had a fantastic time both her and Kitty were filmed by Anglia News but I don’t know if they’ll make it onto TV. 400,000+ people on the march, I’ve never seen so many people in my life but a great day which wont make any difference sadly.

Generally a shitty week but still hope for release in a week to ten days. CAPD training starts next Monday and we also should exchange on Templars with completion aimed for on the 8th – hope solicitors can keep targets better than hospitals.

Thursday 31st October

Again I have forgotten the diary for too long and will try to update it from memory. The week after the 23rd was generally more of the same – GA’s twice a week for dressing changes, dialysis three times a week. The pain from her legs and stomach were bearable and she continued to be on the road to recovery. She continued to lose weight, being unable to hold food down when she could eat and losing protein through the weeping of her legs, but I had no serious concerns. Towards the end of that week it became obvious that CAPD training would not start on Monday the 30th since her stomach, where they harvested the skin for the second grafting, was not sufficiently healed.

The following week (w/c 30.09) she switched back to morphine for the dressing change. Susan went in to hold her hand and the pain was awful, the changes took between 2 1/2 and 4 hours each time and left her shattered for the days in between. Susan and I felt at that time that a lot of the pain was in her mind, we thought she anticipated how awful it was going to be and that made it worse. We weren’t overly concerned for general well being because we could see improvement in her wounds and she seemed to be getting better.

Shelagh and Claudia came over on Friday to help us move and to see Tits. I did the dressing change on Saturday that had been delayed since Wednesday or Thursday due to misunderstanding between plastics and C5. Mr Malata had said that a nurse from D4 (the plastics ward) would come and assist C5 with the dressing change because they had more experience with her type of wounds, pain management and could deal with her more effectively. He had also wanted her to move down to D4 but she had said no. She didn’t want to leave the staff on C5 who had cared for her for so long.

On Saturday we only managed to change the dressings on one leg so I returned on Sunday to complete the other one. It was about now I started to worry about her. She was painfully thin and worn out by the pain of the changes. I felt she was not getting the care that she needed and was falling between the gaps of renal and plastics – no-one was taking ownership of her case.

Shelagh held her hand for Monday’s change – an amazing feat of courage and love for someone who had not seen the wounds or the amputations before. It was harrowing I am sure. I had a long chat with Tits on Monday that resulted in me becoming more concerned about her. I spoke to Florrie and Emma about my concerns and also Mr Clibbern her new plastics registrar. Emma said she’d call the consultant and give them hell to which I told her that she’d would never get to speak to him – this was at about 10pm. Within 20 minutes she phoned back to tell me she’d spoken to Mr Clibbern and he was going to call me!

On Tuesday we moved to Templars. Michelle Davison, Caroline Calvert, Ruth Berry, Angela Quain, Katie Lonsdale and Juliet (as well as Mum & Dad) came to clean the house and unpack boxes. The rest of the week people came to help straighten out the house so that by Friday we were more less straight She moved down to D4 after I persuaded her that it was the best place for her. Emma arranged a site meeting with Mr Malata and Mr Clibbern on Wednesday evening which Ian Grant also attended. We outlined our concerns to them and they assured us they were addressing them. The treatment improved dramatically that week and I really felt we were back on the road to recovery. I collected Tits on Friday evening to bring her home for the weekend. I had asked her on Thursday if she really felt up to coming out for the weekend and she told me that nothing on earth was going to stop her.

She was delighted with Templars, couldn’t believe how much we had done and was truly overcome by how good the house looked with our things in it. She ate really well on Friday night and we had a great evening sitting round her bed chatting. Kate had come down and Mum and Dad stayed the night as usual. On Saturday we continued unpacking and rearranging. Rosie watched videos with her and the boys bicycled up and down the drive outside her window. It was a lovely day with great happiness for all of us. Tits ate a huge breakfast – poached egg on toast – and a good lunch. In the evening we again sat in her room chatting until bedtime. Those were the last good times we had together but I am glad that she came home and was so happy for the night and day.

On Saturday night the Movicol that she had been taking to relieve her constipation (a side effect of the kidney failure and dialysis) kicked in and we were up for most of the night as a result. She hated that she was so reliant on me to fulfil this most basic of human needs although I didn’t mind in the least. The pain was awful now coming from bedsores, harvest site and legs; she couldn’t move without inflicting agony on herself.

Sunday was awful she felt like crap and slept all of the evening. Jack picked up on some subliminal level how bad she was and was quiet and withdrawn all day. At midday I gave her her pills and she broke down on me, not for the first time in the last six months but this time it was the most despairing she’d ever been. Lots of tears and why me, what have I done to deserve this. We wept together for ages, me trying to give her strength but failing. The worst thing was her repeatedly saying how sorry she was for putting us all through this and me trying to assure her that she had nothing to apologise for. The rest of the day I was a mess crying at the drop of a pin. I took her back to Addenbrookes after lunch, we got there at about 3pm. I settled her in and then left after about 1/2 an hour. I still couldn’t stop crying and we sat in her room crying together. I think, in retrospect, that she knew then that she didn’t have any strength left to continue fighting and she was saying goodbye to me. I wish now that I had stayed the rest of the day with her and not come home to help with the ongoing straightening of the house but at the time I still had no idea that she was about to die. I never believed that her indominatable spirit would fail her or that her strength of will could leave her. The pain of the last ten days was really too much and combined with the awful malnutrition (she weighed under 5 stones by the end) she just ran out of steam.