Nurse: Helen

Katie Lonsdale came to visit; you very excited and emotional. Boys off school came to see you at lunch. Bridget and Becca at lunch Then v tired I sat with you all afternoon. Juliet came but I had to send her away (awful guilt but for the best). Dad brought Rosie at teatime you spent all time looking at me – should have looked at Rosie but she didn’t notice..think you were in a morphine haze.

Medical

Took u off ventilation @ 3.5pm for 10 mins too see if you could do it – lasted until 12am when I called. Blood sats so good that they want to take the tube out tomorrow.

Plastics came to look at lower legs – think you are 100% improvement on 2 days ago – hopefully less skin grafting than thought before, only a few hot spots.

Feet look much better – right foot might get away with only the first joints on 2 toes. Left foot worse but maybe only some toes and less of the foot than they thought.

Tongue getting better day by day hopefully only the tip to go.

Prognosis – fair to optimistic bearing in mind how close to death this time last week you were.

Side note – you have had more prayers and good wishes than you could ever imagine coming your way – last week a mass was said in New York, London, Thaxted, Gt Bardfield, a candle lit in the Vatican ( a lie but the person who’s mother did it didn’t know we’d been and tried and I couldn’t disabuse them) and more people than you can shake a stick at doing their equivalent of a prayer.

Another side note: I am going to ask Joey and Florrie to fill in the early days and I will

Between the 24th and the 30th she was released onto C5 but then declined and was re-admitted onto ICU. They tried to save her legs by debridement (removing dead tissue) but the damage was too extensive. She lost her right leg through the knee and her left leg just below the knee. In addition her kidneys failed.

Thursday May 30.05.02

Spacing. Long day of covering what are dreams and what not. Archie on. APD first time machine didn’t work did in end renal nurse fixed it. Jo Malone James and Karin. In and out knowing, phantom limb pains confused, but eating. Dudgeons and Blyths dinner. Phone call from Addenbrookes, dressing change, Joey there, rang her she was in tears, bird song in background. Seriously broke down with D’s/B’s

Friday May 31.05.02

Night after Dudgeons and Blyths. First day in wheelchair. Hoisted out of bed Nisha and auxiliary nurse (Claire?) did it. Shat on the chair while a foot off it, she thought ok not diarrhoea – it was. Cleaned up down to gym,. Room full of elderly people youngest late 40’s early 50’s (Alfie reprobate seen downstairs by children earlier), uncomfortable for me, she chatted to Alfie and an elderly guy no embarrassment but still away with the fairy’s to a degree. Wheel chair around with difficult, warm up exercise on ropes, lifted 5lb weights 20 times. First given weights arm fell on lap. Wheeled her back to ward 11.20 – her below me 1st time (weird) had brushed hair when first in chair. On way back to ward saw herself in full length mirror, upset but no tears. Fleece covering legs from Sarah Norman. Got upstairs Charlotte there went 4 a fag long chat with C. Lunched with C and me. Told C& T about telling Cindy to fuck off you bitch. C left at 1.30pm, tired and put back into bed, shat on bed while floating above it. slept till 2.30pm woke her coz Tara arrived Left them alone to have fags and get lunch, both cash machines bust no lunch. Went back at 3pm she then slept till 5.15. Supper, set up telly, read one fro my baby – good lines in it he knows what he’s talking about. Came home Mum here, took on Anna turned down Kate Sinnot. Supper, last day of school for half term. Children bed late. No tears – so far. Too much drink, too many fags. Grafts on Mon or Tues. Met John Bradbury. Sep possible cause. Chat with mum re unknown well wishers – amazing numbers.

Monday June 24th

Bridget’s 90th birthday yesterday. Printed off Tom & Nicola Ray’s diary, truly inspiring, first time really felt that someone else has lived through what we are going through. Last night at about 9.30 looked over to her chair and started crying unexpectedly. She said today that at the same time she had a huge wave of homesickness for the first time – coincidence? Much better today after skin grafts on Friday. Had to wait 3 days nil by mouth for op. Had debridement on Monday but tissue bed not ready for grafts. Rather than putting her on a list went on emergency list hence delay, cancelled 8pm on Weds, 10pm on Thurs, finally done at 11.45am Friday. In surgery for almost 4 hours. Went down to recovery at 4.15pm to find she’d been there for an hour. Today it’s 10 weeks since she was admitted, seems a lifetime. Nicola Ray says in her diary something along the lines of you wouldn’t wish this on anyone but that we don’t have a choice, the choice is in how you choose to deal with it – very, Very true. Anna and children in to see her, A and Tits had a long chat and sorted vital things like dog food suppliers and cheekiness of Rosie. Georgia & Tom looked after us for the weekend and I had to remove Felix’s car seat for trip to see Tits. Anna and I tried to put it back in The Tank but failed – A going to go to ATS tomorrow to see a pro! I will try to be more regular in writing this – hopeless so far but am commuting between work, hospital and home – 122 miles a day and time flies, as usual still haven’t done B&B letters for birthday. Life is Monday to Friday Anna arrives at 8am, I go to work; I putter around at work until 4.30 – 5pm and then go to hospital, stay for an hour to an hour and a half then go home. Sort of feed myself, aim to go to bed early (am shattered) can’t get myself there (hate going to bed she’s not there), move Felix into our bed, wake him in process, feed him go to sleep between 12 and 1. Weekends, Mum & Dad come on Friday give me a decent meal, sleep as late as poss – Sat anywhere between 11 and 12.30, Sun about 10 to go to church at 11am. Go into hospital after lunch and stay from between 2.30/3pm until 6.30/7pm – prefer weekends on the whole.

This separation is so hard to deal with, all I want is Tits to come home although I know that in some ways it’s going to make life harder. Addenbrookes provides a safety net and allows both of us time and space, which although we hate it, does allow us not to confront some of the realities we now face. Am now having to deal with St Mary’s induction stuff – loads of questions I have no idea as to the answer, immunisations, dress size, X, Y, Z; Tits does this stuff not me. Mary B rang this evening and said it took her 11/2 hours to complete – it’s only a school. Got to talk to some St Mary’s teachers and advise on Tit’s condition soon. Told Rosie yesterday she could go to parties all weekend forgot she was already invited to Thorpeness with Dudgeons, am in bad odour with her. William wouldn’t give me a goodnight kiss because I wouldn’t let him stay up, he gave in later when I went to shout at them.

Can’t get Rosie out of our bed – the boys are pretty hard too.

Tuesday 25th June

Left work at 5pm got to Addenbrookes at 6. Had an hour together. Much stronger and less pain today. General anaesthetic tomorrow for dressing change and more, small, skin grafts to cover the deeper holes in the thighs that they packed on Friday. She saw Max the psychiatrist today, Tara this afternoon, no physio. A good day took strength from her resilience and upbeat mood. Last night lots of wailers and criers, 2 nurses said to her how amazing she was, they could tell when she was in a lot of pain but she never complains. Joey was right when he said that her courage and fortitude teaches us all something – I really feel that we will come through this. Hope tomorrow goes ok, can’t be there for the general but will see her after in the evening. Wish I could have all afternoon rather than a snatched hour in the evening together but I need to get back for Anna. I hate leaving but know I have to go, it gets harder the better she gets.

Wednesday 26th June

Dressing change supposed to be this morning, rang at 1.30 but not happened yet. Went to Ashridge for a career counselling session – complete waste of time. Got to Addenbrookes at 5.15 to be told she hadn’t had the dressing change. Talked to Sarah Alford for a long chat, she’s really sympathetic and very caring – takes a holistic approach to patient and family. Bed was changed for super hovercraft model – only been available for a month and is like something out of Star Wars. Tits loved it very comfortable and rolls her automatically, also drops beneath her bum for ease of bedpan access. Left at 7 and asked her to tell them to call me when she was taken down. Called at 11.30 and they’d delayed it until tomorrow morning. She’s NBM from 3am very busy SHO said she would find her a sandwich for now. Spirits seemed to be high but moving to the new bed was extremely painful but she was incredibly brave. Tara & Bridget visited today.

Rosie had an X-ray for possible broken little finger, in sling and splinted to other finger, 2 week wait to know if it is broken, by which time it will have healed!

Sunday 30 June