Theatre called the ward this morning to say not first thing but at 6pm, which was nice of them to be so considerate for once, or rather for the first time, so she ate & drank until 12pm. Drain worked ok this morning but then stopped so Antonio is recommending surgery to see what’s going on, Lukas thinks a new tube and heamo meanwhile and we just want the tube to work. Why does everything go wrong with her? She’s dreading the idea of more ops, invasions and insertions everything hurts and it’s not fair. Got a call in the pub to say she’d be taken down at 6 so arrived at 5.45. Of course nothing happened, she was prepped and we waited. At 7 had to leave to come home and asked her to get them to call when she went down. Rang ward at 9.30 to see what was happening – still on waiting for theatre to call. Rang at 11.30 it had been cancelled, another emergency had again bumped her. She’s on first thing tomorrow – chance will be a fine thing. Details of an amazing bungalow in Ashdon but very pricey, probably out of our league although one agent reckoned the house is worth far more than anyone else (100k+ more) so if they got it we could afford it. Physios with her today got her moving legs more, which hurt later, and I take that to be positive. Will brought a ward mate in to see her who had had exactly the same amputations and was on prosthetics and a zimmer type affair, although he was an old man and hadn’t got the wounds or renal failure made a really positive impact on her.

On the whole another good day – she just needs a clear run at eating and recuperating with no worry about cancelled ops for about a week and I think she’ll be ready for the gym.

Sunday 07th July

Saturday was a day of tears and talking. We’ve definitely decided to move whatever anyone says. Mostly getting don’t rush it and wait till she comes home but she is determined that she doesn’t want to come back here for both practical and psychological reasons – the house is unsuitable and she doesn’t want good memories marred, also bad memories associated with the house when she first fell ill. Can’t believe it’s 3 months on Monday (also Jack’s 9th Birthday).

Sunday was a funny day. Went to church and Fr John announced the Blyths’ last Sunday, cried in Church, in pub afterwards with Tara and Alex – all the Blyths went to see Tits this morning, lots of tears apparently – and then in the car park when we left but they are going to come for a drink this week before they go. Then went to hospital with all children and Jack’s presents. On the way Rosie was saying it was unfair that they hadn’t seen Mummy in the wheelchair and when were they going to. In the car park we met Charles and then we all went up to C5. Got there and Tits told everyone to go downstairs because we were going to have a coffee. Will put her in the chair and I wheeled her down to the concourse where we all sat having coffee’s and talking. Florrie arrived and joined us. After 1/2 an hour we went back up and opened Jack’s presents but I think the best present was mummy out of bed. Every time I think about it I fill up – it’s been the best day since the whole thing began, please God it continues like this. Mum’s going to go and see Meadowside in Ashdon tomorrow to see what she thinks so that we have another view apart from mine on it – I’m fairly sure we should go for it but will wait to see what she thinks. Red letter day. Am going to go upstairs to cry myself to sleep.

Monday 08th July

Didn’t cry myself to sleep last night just passed out. Great/crap day today. Dressing change without GA but with too little morphine so really painful. Got through it and the wounds were amazingly better, really healing well although the raw parts ere agony and taking off the under bandages was awful her grit saw her through. I can’t explain the pain and agony it causes me, it’s like going through childbirth when you can only empathise but not understand. I hate seeing her go through all of it and can’t help her other than hold her hand and stroke her. I feel drained and cry a lot each time we go through this but can’t show how I feel at the time because I need to be strong for her. Mum saw Meadowside and thought the pros outweighed the cons so am going to put an offer in tomorrow. Bridget meanwhile, and unknown to me, saw Wisteria Cottage and put an offer in. All sorts of shit happens without me knowing – Rosie going to a sleepover next Saturday, boys doing stuff, Mum helping Anna today for Jack’s tea – stuff I suppose happened in the background that I didn’t need to know about. I feel out of control but in control, stuff flows by me and then springs up at me that I don’t know how to cope with but do. I feel like I am on a slide that stops and starts and then has an unexpected bend – see Bridget above, I was stunned when she told me and she was really excited! Where does that come from? Today was a good day bar the dressing change, 1/2 way through a cardiac arrest down the hall prolonged the change for an hour, which allowed saline to absorb into the dressings making it easier on the last skin contact change (although hard to tell at the time), Mum’s OK on the house, Anna staying late – she’s really becoming part of the family. Bridget’s surprise offer, and Tit’s upbeat psyche. Final thought – Tits was talking today about how inured she is becoming to the crashes and deaths on the ward, I’ve only been there for two crashes, and how the bodies are wheeled out in boxes and the doors are shut, but more importantly how it’s become just part of the routine. How it was worse when the guy beside her who crashed twice in one night, and how the side room protects her but does not hide her from it. She is becoming like the nurses detached from the individual awfulness of hospital life, a 30 year old guy unexpectedly died last week and all were upset but today, I think haven’t asked, staff would be pressed to name him. Tits dreams/thinks/imagines we aren’t telling her the truth and she will do the same. 12.30 got to go to bed – am going to learn how to do a website not tonight obviously.

Wednesday 17th July

Last week was fantastic she made amazing progress and was down in the gym several times – when dialysis didn’t cock it up – albeit in her bed doing upper bodywork. Each day she got stronger both physically and mentally. Spoke to Mr Malata on Weds who said that if she continued to heal the way she had been from a plastics point of view she would be able to go home in a fortnight. Didn’t see her that night since I went to St Mary’s open evening with Rosie and managed to buy all of her uniform. Rang Tits when we got home and talked for about 1 1/2 hours (at 50p a minute!), covered loads of stuff that we hadn’t/couldn’t/wouldn’t talk about face to face, a rally good chat. Saw Lucas on Thurs afternoon and he said that from a renal point of view she could be an outpatient now. She spoke to Jan on Friday morning and she reckoned that if she worked hard she could have a weekend at home in about 3 weeks. We both got overexcited and were thinking that she might get home in a month – or rather I did, by Sunday she was talking 6 to 8 weeks.

On Tuesday morning at about 2am her lung partially collapsed again; when I saw Tits that evening she was wheezy, tired and in quite a lot of pain. On Tuesday she was much better and talking of getting back to the gym. This evening she was much worse, and on top of everything constipated which was a giving her a lot of stomach pain. Just before I got home C5 rang to say she was much worse and they were moving her back to the room by the nurses station (she’d moved to side room near the ward entrance last Friday) because she needed close attention – mainly because her blood saturation was poor and getting worse. They were also going to get a Dr to have a look at her. At 9 I rang them to be told the Dr was with her and that her sats were much better and she was improving rapidly. They are doing a chest X-ray and will call me if they have any news.

On the positive side for this week: Meadowside is back on the market, the cash buyer’s wife decided she didn’t want to move after all. But the vendor will only accept full asking price, so said yes to it, and won’t give us exclusivity. Still looking for other houses but think that Meadowside is our best bet. School plays and sports day this week. Also think that despite the lung Tits is really on the road to recovery (how many times have I thought that now?). Plus amazing amounts of letters and extraordinary well wishers still – news ripples out and ever more unexpected people contact us, the care and concern out there is astonishing.

More people are offering holidays for either me or the children which is sweet of them and I don’t have the heart to tell them the last thing I want to do is leave her or, selfishly, be parted from the children. I am going to take them to the Broads in August – all things being equal – but I don’t want to send them to France, Spain or Yorkshire and don’t want to leave Tits alone in Addenbrookes. We’ll go to Spain or France when she’s out and strong enough – I haven’t forgotten that I promised to take us to Paris for our wedding anniversary next year when she was in ICU the first time. Another thing people keep saying how well we (children and me) are coping – I know few people go through shit like this but the truth is, as Nicola Ray wrote, we don’t have a choice we just get on with it. Amazing how all this oddity has become, so quickly, normality for all of us – even Tits who hates the hospital is institutionalised into Addenbrookes time and routine – bizarre.

Need to buy Fat Boy Slims Praise you, sums up so much – we’ve come a long way baby, I’ve got to praise you like I should.