Just to warn you that this a very long entry being a diary I kept during my wife's hospitalisation in 2002.
I'll never forget the day our life changed, Monday 15th April 2002 - but that's a lie it didn't change, it shattered. That was the day Titania was rushed to hospital with what turned out to be severe septicaemia that then led to sepsis (gangrene to you and me) in her lower legs that led to a bilateral amputation (that means both lower legs amputated).
I begin this diary on day 47 after she was first admitted to the Hospital's medical admissions unit, so some of the early days are a little hazy, as much from the road travelled as from the confusion and fear/terror that I went through at the time. I will however try to be as clear and exact as I can be about the events to date as I can be and will try to keep a daily diary to keep ongoing days fresh in my mind to update here as they happen.
Sunday 14th April
Tits had a headache in the morning but was OK to go to Church. Rosie and I bicycled to church, with much moaning and groaning from Rosie; it took us 50 minutes because she went so slowly. We arrived at church after the service had started to find Tits and the boys already there having dropped the B boys back home – we almost stopped on the way so Mummy could pick Rosie up and I could bike the rest of the way.
After church Tits asked Ruth Berry, who was at the mass with Emma, Tom and Alex, to come back home for a drink. Ruth rang Simon who drove over and we had a pleasant hour to two hours drinking on the terrace. We then had a late Sunday roast (pork) after which we pottered in the garden and Titania took the dogs for a walk with Rosie. The boys played in the garden and I sowed vegetables.
At about 4pm Tits said she felt ill – she had flu like symptoms and a ferocious headache – and I told her to have a hot lavender bath and to go to bed. I "fed" the children and the boys went to bed at about 7pm. Rosie went to check on Tits at about 8pm and Tits came down stairs intending to cook supper. She looked like shit so I sent her back to bed, she said later that night that she had had a cheese sandwich. Rosie went to bed at 9pm and I followed at about 11.30.
Monday 15th April
Felix woke at 1.30am and Tits woke me saying she couldn't cope with feeding him so I gave him a bottle and put him down in our bed. At 6am he woke again but Tits didn't, I gave him his bottle and fell asleep until the alarm went off at 7. Tits asked me to take the day off but I had an interview to conduct so had to go to work but promised to return by lunchtime at the latest.
Drove off to work, stopped for petrol and Tits called me at about 8.15 having got the children ready for school; again asked me to stay at home, which I again explained I couldn't.
Got to work at 8.40ish and prepared for the day, told Les and Nigel I would be taking a half day to go home and look after Tits. No problems. 10am didn't show so left at 10.30 and drove home. Mobile message from Susan picked up expressing major concern over gibberish conversation she'd had with Tits at 9.30. Arrived at 11.30 and took Felix from bed with Tits. Fed and changed him and kept eye on her. Susan and Betsy turned up soon after, with Susan seriously worried abut Meningitis but I didn't want Tits disturbed and sent her away. I thought she was being typically over dramatic and scare mongering.
Took opportunity to catch up with backlog of work and personal stuff and checked in with her occasionally. At 1.45 she was looking like shit so called surgery but lunchtime answer phone was on. Went upstairs and told her and she said this was normal, and I should call back at 2. Phoned from 2 until 2.10 and finally got through. Expressed concern to receptionist but didn't mention meningitis. Receptionist said she'd find a Dr. Dr Ralph came to phone asked for symptoms, was she mobile etc, I wanted a home visit but she told me to bring her to surgery. She was very cold so I made her have a bath (wrong thing apparently) and looked v ill – I was worried enough to want a home visit so I was obviously quite concerned. Went and told Tits, she got dressed and we drove to the surgery. Waited for about 5-10 minutes in surgery and Tits went in for consultation while I waited with Felix in reception – not asked to join even though Tits clearly not well.
Tits came out and said that her tonsillitis had moved on to her chest and she needed a new dose of antibiotics. While waiting for prescription I sent her back to car because she looked so awful – Ian Patterson was there and may remember. Drove home and she took the first two pills and was back in bed by about 2.45.
Left T alone to struggle through. Children returned at 3.40 and I (think) checked on her. Rosie did tea while I worked on. Ran children a bath and checked Tits, she complained of tummy ache and joint pains in her legs. Stopped bath and when I went back she was short of breath and had blue lips. Rang surgery and then, off answer phone message, emergency dr. Went back to Tits who had a collection of purple spots on her forehead and a blush of red on her jaw – I think now she had had a rash earlier in the day (about 4) which had subsided which I had ignored because it appeared either transient or like a fever – the reason I rang was because she had blue lips and could hardly breathe, the rash appeared later when she came downstairs (06.09.04)- the emergency Dr rang back, I explained symptoms, he consulted Dr in car and called back saying he'd also called for an ambulance. Panicked told Tits and Bridget. Dr called back saying cancelled Dr in car only ambulance. Phoned Tara for children, whilst doing this Tits came downstairs and sat on bottom step. She then went to kitchen and collapsed on the table.
Left T alone to struggle through. Children returned at 3.40 and I (think) checked on her. Rosie did tea while I worked on. Ran children a bath and checked Tits, she complained of tummy ache and joint pains in her legs. Stopped bath and when I went back she was short of breath and had blue lips. Rang surgery and then, off answer phone message, emergency dr. Went back to Tits who had a collection of purple spots on her forehead and a blush of red on her jaw – I think now she had had a rash earlier in the day (about 4) which had subsided which I had ignored because it appeared either transient or like a fever – the reason I rang was because she had blue lips and could hardly breathe, the rash appeared later when she came downstairs (06.09.04)- the emergency Dr rang back, I explained symptoms, he consulted Dr in car and called back saying he'd also called for an ambulance. Panicked told Tits and Bridget. Dr called back saying cancelled Dr in car only ambulance. Phoned Tara for children, whilst doing this Tits came downstairs and sat on bottom step. She then went to kitchen and collapsed on the table.
Tara then arrived, I think with Bridget, and the children were in and out, Rosie trying to comfort Tits who was more or less incoherent. Tara told me to chase the ambulance that arrived soon after. Bridget wanted me to drive to the hospital but Tits wanted me to go with her so I did. Between leaving home and arriving at the Hospital the rash had become severe.
We went straight to medical admissions and she was given antibiotics, blood was taken and I began to lose focus – they wanted to know what medication she'd had so I went out to call Bridget to find out. When I returned to the unit Susan was there talking to the Dr but giving inaccurate information, I think Betsy might have been with her, I was abrupt with Florrie and went off with the Dr – Florrie must have come with us. They called Dr Tayler to find out what she was on for the first course of antibiotics and he went in to the surgery to look it up. They also got the Dr from ICU down to see her. Within minutes of ICU being involved she was rushed off. Florrie and I went for a fag and wept together – the guilt of her warning will always haunt me.
Tuesday 16th April
I can only remember being questioned about Tits' health, pregnancy, lifestyle etc in the early hours and then being allowed to see her. Different Dr's asking the same questions to Florrie and I, over and over again. Joey arrived at some point and we went through the same questions again. A nurse, I think Michelle, came into say you were going to be sedated and that it might be the last time I could see you and I couldn't bear to do it – sorry I was too weak. Florrie and Joey went in and then you went under. I can't remember much of Tuesday other than it was the blackest day of my life and that Joey and Susan were brilliant. Lots of tears and lots of fags. I now know that they thought you were going to die, thank God I didn't then.
Rang some people – who knows who, news flew like wildfire. T and J and E were already rock like. Told E not to tell mum and dad, I didn't want to spoil their holiday. Fr J anointed you with sick prayers and healing oils; JL and A alerted him early am, J served as altar boy at the first of many services for you. I thought he meant last rites when he said he'd anoint you and collapsed.
Wednesday 17th April
Nurse: Alex
More of the same – I can't remember..maybe S can or J can. I know they were both still there, J stayed the night with me and had dinner with Mummy and we had a bottle of wine in the interview room.
I drove F's car home to get children off school bus and tell them what had happened – they'd been with T before and J stayed the night at home with them. F's car goes fast. Tried to ring Mum and Dad but got a Manuel type who was useless and gave up. C turned up at hospital and then got in touch with M&D.
Thursday 18th April
Nurse: Alex
E came early morning and met up with family councillor (with me) to discuss how to bring children in. Polaroid's taken and then shown later in evening to discuss with them at home. Hard; met off bus and talked then fled to your bedside. Think Mum and Dad back now – yes were because had huge row with Dad that night. K also on the scene, maybe came yesterday. You still sedated but beginning to recover. Children coming in on Sat Polaroids were to prepare them for you and ICU.
Friday 19th April
Nurse: ?
Can't remember much. Dreaded tomorrow.
Saturday 20th April
Nurse: Helen
R loves Helen
Children came in they were fantastic. R chatted and overcompensated trying to look after me, J subdued, W discussed your machines. Huge family cry in evening which was good – W didn't join in.
Sunday 21st April
Nurse: ?
You woke up being off sedation and J saw you first, then you flickered your eyes for K and when I got there you opened right up. I asked you to blink if you could see me and you gave me double/triple blink – the relief was unbelievable. Your first question, when I could understand you was, "how is mummy".
Monday 22nd April
Nurse: Ruth
You were back under today but positive messages from Dr's. Melanie's passed you over to someone else which is a downer but when B & Mum see you, you are awake. J comes to see you first he can't talk (it's J), R next can't shut up and W who's more interested in the machines than anything else.
Best day so far – you're in pain but so obviously aware that brain damage not a problem (I pray).
Tuesday 23rd April
Nurse: Ruth
I forgot until late to mention that it's our wedding anniversary and you knew that it was. Loads of questions about other people S, M, C, M, Me, everyone but you. Try to keep you quiet; your recovery is staggering.
Wednesday 24th April
Nurse: Helen
KL came to visit; you very excited and emotional. Boys off school, came to see you at lunch. B and B at lunch Then v tired I sat with you all afternoon. J came but I had to send her away (awful guilt but for the best). Dad brought R at teatime you spent all the time looking at me – should have looked at R but she didn't notice..think you were in a morphine haze.
Medical
Took u off ventilation @ 3.50pm 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, T, Gt B, 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 J and F to fill in the early days and I will - actually I never did.
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. Automated Peritoneal Dialysis (APD) for the first time, machine didn't work did in end renal nurse fixed it. Jo Malone from J and K. In and out knowing, phantom limb pains confused, but eating. D's and B's dinner. Phone call from Hospital, dressing change, J 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 D's and B's. 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 fairies 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 first 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 SN. Got upstairs Charlotte there went for 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 so no lunch. Went back at 3pm she then slept till 5.15. Supper, set up telly, read One From My Baby – good lines in it he knows what he's talking about. Came home Mum here, took on Anna turned down Kate S as a permanent nanny. 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 B. Meningacoccal Septicaemia possible cause in his opinion. Chat with mum re unknown
Monday June 24th
Bridget's 90th birthday yesterday. Printed off Tom & Nicola R'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 normal operation list she went on emergency list (to speed up the process) hence the delay - the theory being that as an emergency she would take priority over non-emergancy procedures, however more serious cases take precedence which meant that her op was cancelled 8pm on Weds and 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 R 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 R. G&T looked after us for the weekend and I had to remove F's car seat for trip to see T. 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 F 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, I 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 T to come home although I know that in some ways it's going to make life harder. The hospital 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 to which I have no idea as to the answer, immunisations, dress size, X, Y, Z; T does this stuff not me. Mary B rang this evening and said it took her 1½ hours to complete the forms – it's only a school! Got to talk to some St Mary's teachers and advise on T's condition soon. Told R yesterday she could go to parties all weekend forgot she was already invited to Thorpeness with the D's, am in bad odour with her. W 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 R 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. J 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 afterwards 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 the hospital at 5.15 to be told she hadn't had the dressing change. Talked to Sarah A 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. T 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 been Nil by Mouth (NBM) from 3am, a 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.
R 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
Very weepy day yesterday, T cried over anything (went to see a bungalow which was too small and not enough garden, told her she cried). Was NBM for dressing change that didn't happen so weak anyway. Went up to Thorpeness, R J & W there F with Tammy & Alistair, cried extensively with Angus and Juliet. Sunday much better she was much stronger and we had a good afternoon together. Came home found video of Rosie aged 8-9 months that survived cellar and watched and cried again. Funny day of alcohol depression and real depression but also positive feelings. R to Devon tomorrow dreading it, B's leave in 2 weeks – also dreading. T now screensaver made me cry on Friday – I thought I was dried out.
Tuesday 02nd July
NBM again today waiting for dressing change that didn't happen, T cancelled at 7pm. Hadn't eaten or drunk since 6am when Jenny woke her to give her a drink. So weepy again, Bridget went in for lunch yesterday and told her the move would be a brilliant idea but that she wanted to buy a small house in Gt S – can't do both. Decided today, with help of Max her psychiatrist, to be selfish and just sell and move Bridget whatever. Between weeps still OK, Caroline C, Beth and Tara visited. Peritoneal Dialysis catheter blocked which could mean having to go back on heamo – and having a cvp line put in – and then having to have a new pd catheter put in. They have done an infusion to unblock the tube and we wait to see if it has worked. They think fibrins (blood clotting stuff) have collected in or around the tube and the infusion will hopefully break them down.
Rang at 11pm to see how the transfer went but they hadn't done it despite Lukas telling them to do it as soon as theatre was cancelled, apparently they wanted more time for the infusion to work, more likely they are understaffed again and haven't had time. Nisha back from holiday yesterday, good I like her being there looking out for T. Sarah sent a nice card to R saying thanks for cake bake money – nothing from ICU who also got £85.
Spoke to Jenny at 11.45 a little drained but they expected that and the fill is going in, slowly but going in. It looks like the fibrins are breaking down but we still, as usual, will have to wait and see.
On balance a good day but quantified by life for the last 3 months has been a fuck. I can't believe it's going to be 3 months on Monday how does this happen to people/us?
Wednesday 03rd July
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, and 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 J's 9th Birthday).
Sunday was a funny day. Went to church and Fr John announced the Bs' last Sunday, cried in Church, in pub afterwards with Tara and Alex – all the B's went to see T 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 J's presents. On the way R 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 C and then we all went up to C5. Got there and T 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. F arrived and joined us. After ½ an hour we went back up and opened J'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 were agony and taking off the under bandages was awful but 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 – R going to a sleepover next Saturday, boys doing stuff, Mum helping Anna today for J's tea – stuff I suppose that used to 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, ½ 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 T'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 M (head plastics honcho) on Weds who said that if she continued to heal the way she has 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 R and managed to buy all of her uniform. Rang T when we got home and talked for about 1 ½ hours (at 50p a minute!), covered loads of stuff that we hadn't/couldn't/wouldn't talk about face to face, a really 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 T 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 a 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, but 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 T 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 T alone in the hospital. 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 R 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 T who hates the hospital, is institutionalised into Hospital 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.
Monday 29th July (Day 105)
T came out for the day(ish) on Friday to see Meadowside and another house I had seen and on which we put an offer in that was accepted. She then came home for lunch. Will and Lou (nurses) came with her, as did the children – bar F who stayed with Anna. It was a great success and we all took a lot from it but when we returned to the hospital it was incredibly depressing, I have felt depressed ever since feeling like I have had some normal life back and then it was snatched away. Whilst it was great to have some time out of the hospital it has also made me realise quite how much we are all missing. At some stage in the last few weeks acceptance of our routine has set in and Friday made us realise that the routine is not normal, having a legless wife is not normal and being apart for 15 weeks is not normal. There are less tears and overall sense of why us but this has been replaced by something like lethargy or apathy. I feel constantly hollow, as if some vital part is missing, rudderless I suppose and find it hard to really care about stuff I know I should be doing. I just want her back no matter how hard that is going to be for both/all of us.
Hadn't realised I haven't done an entry for the last 10 days - not much happened hospital wise, mainly because she was getting over the collapsed lung so little physio. At school the juniors did Oliver on Thurs night (R had a great singing role and was fantastic, J skulked around at the back or hid his face under his cap as usual). Last Monday morning was the Leavers mass during which I managed to retain my composure, much to R's disgust, even though I was surrounded with weeping mothers! Stayed in bed on Wednesday causing panic at work and hospital, having sat up until 4.30am drinking with J. Then T out on Friday. Boiling hot since Friday (30 degrees) so Mum and Dad took them back home on Sat & Sun to swim, they go in to see her this afternoon. A normal abnormal 10 days.
Wednesday 21st August (Day 129)
Amazed to find I haven't done the diary for almost a month, so much has happened since that Friday. The following Friday when I got to the hospital in the evening T said that Lukas had asked her when she was being picked up on Saturday, when she replied that she wasn't he said he thought it was really important that she did come out. I re-arranged T and L, who were coming to look after us that weekend, and picked her up at 10 and bought her home. The day was unbelievable since it was unexpected and thus was wonderful. Then I got a call from the ward on Sunday morning – having stayed up talking with Tic until 3.30am – asking when I was coming to collect her, even better! T and L were fantastic (unfair on all the other people who've helped but, probably because of the circumstances as well as them, were the best people helping so far despite confusion of having two F's in the house).
The weekend of the 10th/11th was odd, we hardly talked or really saw each other. Bridget got up my nose because T was sick during lunch and she over reacted deciding that she shouldn't be out of hospital and that she was uncomfortable and in pain. Looking at the black side of life seems to be a family trait.
Started 2 weeks off work on Monday and during that week F came up with a plan concocted with W to buy our house. I think she's mad but have accepted their offer and we are now going ahead with the new house, we are dependent on the sale of F's house but hopefully she'll sell quickly and we'll be able to get on with the sale asap.
During this time we've all followed – R in particular being only a year older – the awful case of Holly Wells & Jessica Chapman, I've hardly been able to read or watch any news without crying. In some shallow way I can really empathise with their poor parents but hope and pray that this is the worst we ever have to live through. I will pray for both families and hope that God will bring them comfort in time.
Had the first dressing change since July 8th that I've been able to be there and the difference was been amazing, when I last saw her legs they were open wounds and quite horrific – she got through two or three trainee nurses and I more or less fainted during the dressing change, last week there were large patches of healthy skin and, although there are quite a few sloughy bits, looked well on the way to full recovery. I don't think they'll ever be fully back to "normal" but you can see that they will be functional and (this is hard to say and I'm not sure the right thing to say) viewable in private. I know her legs aren't ever going to come out in public again and it hurts – I can't remember if I've said before that her legs were one of the best physical parts of her before (at least her ears are still there). I have learnt very clearly over the last 4 months that the physical side of us is crap and that it's what and who we are inside that counts. I think I am a Taoist Catholic or maybe a Catholic Taoist.
On Thursday took the children and EB, a friend of Rosie's (not F who stayed at home with Anna, a well deserved day off for her – can you imagine being a nanny and taking on a mother of four's job? I'm not sure I'd do it, in fact looking after 3 this week without a baby I know I wouldn't) to Chessington. We had a great time except taking 2½ hours to get back, it was much easier than I had expected except I had been given free tickets for 5 to get in and, being me, only looked at the complimentary ticket the night before to discover they were invalid on Bank Holidays and during August – bollocks - went anyway and spent a fortune.
On Friday Mum collected F and the dog and we left for a week on the Norfolk Broads planned in February. We stopped off at the hospital bade a tearful goodbye to Mummy and drove to Stalham. Collected the Bright Gem 4 and motored off, nervously, into the wild seas of the Broads. After three of the most stressful days I have ever had in my life we returned to the hospital relieved to be all alive and more than happy to be away from the broads – they are not the place to take 3 young children on your own, the days stretch before you with nothing to do but cruise and cruise and the boats are small, dirty and damp – not good for a novice single parent. I can cope with them all with space and entertainment but not with boredom and a constant fear of drowning.
Returned home to find the new house was going ahead (there was a fear it might be pulled from the market but I think that was the seller arsing us about), T had arranged a commode and an air mattress to be delivered before Friday so that she can stay at home on Saturday and Sunday night and, most importantly, a release date has been provisionally set for September 01st.
We spent today, apart from a visit from Annabelle M (1st time for her but she's an ex nurse and handled it with, I want to say aplomb but that's wrong and so is equanimity, she was fantastic - bright, chatty, gossipy and brilliant), trying to sort out a ludicrous Financial Assessment Form from Essex County Council and then home care/day care for release date. We are approaching a dark world of red tape that I really don't want to enter.
As release date gets closer I am getting more concerned about the amount of care T will need and am thinking more and more about whether I will have to take either a sabbatical or give up work altogether. My feeling at the moment is that I will have to give up work and become her full time carer – it has major attractions but is very daunting, I'll wait and see.
In all, despite painful dressing change, holiday, house worries, family stress (I forgot to mention coming back and having no cooker or hob, or the interesting conversations re Hardys sale) it's been a great month and we are finally, hopefully God willing, seeing one door closing and another – probably harder – one opening…we'll see in the weeks to come what will happen.
Wednesday 28 August (136)
T 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 B, who had no idea that T 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. the hospital blamed the surgery, the surgery blamed the hospital. I spoke to Sue and explained the situation (she didn't even really know what T's 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 T 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, T 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 F 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.
K and I moved sofas around and brought J's bed downstairs into the sitting room in the morning. After lunch I transferred her to the bed. Mark C arrived at 4 (I'd forgotten he was coming) and shortly afterwards Angela Q (forgotten also). Lots of tears from all and long chats ensured. Had supper and then Mum, Dad & K 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 F 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 F has had 2 offers on her house 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 F was still there having started the dressing change at 4pm, the right leg had taken 3 hours to change and it was as bad as on Monday. F 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 A 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, T 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 J's bed again which isn't ideal but does work.
Got up to the hospital 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 any more 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 the Hospital would let her out on Monday.
Went to church on Sunday and the pub afterwards with John L 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 W, 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.
Anyway just before 1 o'clock Mum rang – I can't remember if I've said how fantastic Mum and Dad (and C, E & K) have been throughout this; Mum arrives at 5 to let Anna get off, sorts out F, cooks children's tea, starts cleaning (even if R the cleaner has been since you can't tell if she has), cooks supper; Saturday cleans rest of house, washes sheets, towels & any other laundry, irons, looks after F and the others, looks after me, looks in to Bridget, gardens, looks after Dad when he comes back from home(he's amazing as well, I know he wants to be with Mum but he comes over on Friday night helps out, gets up goes back home, comes back on Sat night and so the cycle goes on) and always makes it all seem like a piece of cake – swanlike in her serendipity. The awful thing is I don't thank them – or appreciate - them enough and without them I couldn't even begin to cope. I know they want to do it but the depth of my appreciation and love will never be adequately expressed and the worst part of it all is that on the whole I just want to get back to normal; T home, no mad drives between work, the Hospital and home, no "strangers" in the house just us and not feeling inadequate and incapable – on the mobile whilst I was finishing my pint to say the hospital had rung and they were going to start the left leg at 1.30. Mad rush back home to drop children off and then in to Cambridge. Started again at 2 and again awful. More psychological this time but still lots of pain and not anything I'd want anyone to go through. Decided to get pain management to see her on Monday to recommend different pain relief since morphine doesn't work. Left at about 6 in a depressed state, felt awful. Knew that the homecoming wasn't going to be on Monday (an important date because R started at St Mary's on Tuesday) so another target lost. Judy M had rung on Saturday to say social services hadn't been able to arrange homecare, the bed hadn't arrived and her legs were too painful to move – how would I pick her up? Next change is Tuesday, F will hold hand, we're all dreading it.
On Monday I was snowed at work and got a call from T at about 4.30 to say that she'd been told that if she left permanently there was no guarantee she'd get back onto C5 if she needed to come back and that the general opinion was that her legs proscribed releasing her. She still wanted to come out tonight though, I said that we'd talk about it when I got there. My view was that although she wanted to come home for the night to see R off, the logistics of getting her back to hospital made it impossible, she'd have to come to school with us, sit in the car for a while and then I'd have to drive her back to the Hospital. It would take at least 1 ½ hours and 4 lifts in and out of the car when the slightest movement of her legs was agony. We agreed, reluctantly, that to come home was impractical. We then had one of our most uncomfortable ½ hours to date ending in turning the telly on and not talking much. Got home and the children had hung a welcome home sign and balloons on the mantelpiece in the sitting room, with Anna's help. They were very disappointed but covered up well – ever since I've had to answer the when is she going to come home questions.
Took a very subdued R to school; we had to be there at 8.45 and every 2 minutes she'd ask me the time, dropped her in the hall at exactly the right time and went to work, quite tearfully (I hate dropping off at school at the best of times). As agreed R rang me, after Mummy, when she got back. I was busy so diverted her to voicemail. Got the most excited message saying that she had had the best day ever and that St Mary's was fantastic – thank God.
When I got to hospital even better news; T had been given 10mg of Valium and 10mg of morphine, total calmness descended and she removed the dressings herself. It took no time (comparatively) and self pain management meant it went really well. The legs were much better and a plastics dressings specialist came up and confirmed it was the change to Bactigras that caused the problem not an infection. He didn't think that she'd need more grafts but wanted Mr M to check the legs and give them a really good clean under a general on Thursday (today – NBM all morning, nurses on phone all am chasing, allowed lunch, told surgery after 6, saw Mr M at 6.30, should be done within 3 hours if no emergencies, now 10.20 no news!). If a need for grafts they will be done over the weekend, not what I want.
We were both really lifted by the improvement in the legs and the pain. Looking back I think we were both relieved that she didn't come out on Monday. Even though I know that home is the best place for her, where she'll recover quicker, eat better and generally improve both physically and mentally, I think we both knew we weren't ready for her to come home. We look forward to release but dread it; the trouble is we're both institutionalised to different degrees. We know what the Hospital life is like and have no idea what outside will be like – will we be able to cope? Yes we will but we don't know what it's going to be like, we don't know if it's a long drop off the cliff face or if there's a ledge just below us, we're dealing with new people/carers, we wont have 24hr care and it's all scary as buggery. However going from ICU to C5 felt like this so…..
On Thursday the boy's went back to school but their bus had been cancelled because CRB hadn't processed the escort, Mary B drove them in. R's bus arrived 10 minutes early and she left her lunch behind; had to drop in to school to drop it off. 15 mins with T because traffic is back to normal and I left work late – God it will be great when she's out, no worries about time together in hospital can leave work at 6.45 and have rest of evening together. Hopefully will be released either next Friday or early the following week.
Monday 09th Sept (Day 148)
On Friday she had another GA so that plastics could give her legs a really good clean. She was under for over an hour and they removed all of the dead tissue and skin. They basically scrubbed them clean. Got to the ward at 6, had left work early, and got 25 minutes nap before she returned. She was remarkably alert after the GA and had none of the problems she had last time. Her legs hurt but were manageable with Codeine she thought. The bed hadn't arrived at home yet (during the day the district nurses office called C5 to say they knew nothing about providing a bed for her despite about a hundred calls by Anna, Sonia et al and Sue B saying she'd sort one out 2 weeks ago!) so I put J's bed back up on Saturday and went to fetch T. Got home at about 11.30 and sat in kitchen chatting, had lunch and then went to the new house to have another look around. Bridget had gone out (I was not expecting her to and had assumed she'd look after the children so Mum could come with us). Theresa R kindly looked after the children for us. Spent 2 hours going over the new house and Mum liked it a lot, or was kind enough to let us think she did.
Got home at 4.30 and had forgotten Helen L was coming. Supper followed by an early bed but we stayed up until 1.30 again talking. Even though we'd sworn we wouldn't do it again it's impossible not to, given the constraints on time to talk. Went to church and the pub on Sunday, Dad came with us, L's and Steven F there. Had a lovely afternoon doing nothing and then went back to the Hospital at about 6pm.
Got to the Hospital late on Monday, traffic awful and left late, went up to the ward but she was in Dialysis. Went down to Dialysis and was told she'd just left to go back to the ward. Went back to C5 waited for a bit then asked Judy where she was, she'd been taken down at 4.30 and wasn't expected back until at least 8pm! Went back to Dialysis and there she was! Got 10 minutes with her. Plastics have decided they should do a bit more grafting on small parts of the legs – more infilling/patching than anything else – and that they'll do it on Thursday. Mr B said to her that he thought she shouldn't come out for at least 2 or 3 weeks when home dialysis will be up and running and the legs should be more or less healed. Bollocks to that, I'll carry on pressing for release asap, so long as she can stand the dressing change they've all said there's no reason to stay in. We'll see how the grafting goes and then make a decision.
The Benefits Agency also rang to see if she had been released because they want to assess her for DLA. I explained the situation and asked why she couldn't be assessed in the Hospital, to which the lady said of course she could! She is organising a Dr to go and see her so they can process her claim asap – unbelievable. Still no bed at home though. Am in PBO today so should get down to the Hospital earlier than usual, depends on the A14.
Monday 23rd September (Day 162)
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 B and F came down on Saturday and stayed the night. Charles didn't know how to deal with it all and seemed fairly stressed out by the circumstances, particularly when I cooked him steak, 2 veg and potatoes for supper (R made T spaghetti Bolognese). We watched Casualty which had a car accident victim having a roadside leg amputation which he was horrified about! D's came with lunch on Sunday and Ruth/Caroline's sponsored walk took place. Dropped R and K off at The Plough and you've never seen so many people. R was in a panic thinking we were going to be late and the D's hadn't arrived so had to leave without K 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 M & Mr G on Monday they were horrified she'd been out for the weekend but since they didn't say she couldn't 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 G 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 not 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 J who was away at a cub family camp with the Bs') 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 C and G and the Ds' (Ann & George met us as well). R had a fantastic time both her and K 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 the new house 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. S went in to hold her hand and the pain was awful, the changes took between 2½ and 4 hours each time and left her shattered for the days in between. S 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 her general well being because we could see improvement in her wounds and she seemed to be getting better.
Sheelagh and Claudia came over on Friday to help us move and to see T. I did the dressing change on Saturday that had been delayed since Wednesday or Thursday due to a misunderstanding between plastics and C5. Mr M 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.
Sheelagh 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 T on Monday that resulted in me becoming more concerned about her. I spoke to F and E about my concerns and also Mr C, her new plastics registrar. E 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 C and he was going to call me!
On Tuesday we moved to the new house. Michelle D, Caroline C, Ruth B, Angela Q, Katie L 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 or less straight. She moved down to D4 after I persuaded her that it was the best place for her. E arranged a site meeting with Mr M and Mr C on Wednesday evening which Ian G 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 T 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 the new house, 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. K had come down and Mum and Dad stayed the night as usual. On Saturday we continued unpacking and rearranging. R 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. T 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 morning. J 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, 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 the Hospital after lunch, we got there at about 3pm. I settled her in and then left after about ½ 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 indomitable 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.
On Monday 14th she had another GA early in the morning and when I saw her in the evening she was still groggy from the anaesthetic. The accumulation of anaesthesia in her system and the lack of kidneys to remove it meant that after each GA it was longer and harder to recover than the last time. I didn't stay long since she was so spaced out.
On Tuesday morning I got a call at 7.45am to say she wasn't well and I should come in to the Hospital. I had a builder coming to quote for the changes we needed to make to the new house so waited for him to arrive and showed him what we needed. I got to the Hospital at 9.15am to find her very confused (confused is a medical nicety for being utterly fucked in the head). She knew I was there and I again talked to her about fighting on and beating this stage of her illness. Whilst talking to her she became worse and the nurse called the SHO in. He told me he thought she was going to die in the next few minutes and that he had called the crash team and ICU (which was nice of him). Crash arrived first and the SHO made the nurses take me to the Relative's room – unbelievable (which given all that we'd been through before was really sensitive). I stood in that room praying as hard as I have never prayed before – just repeating please God incessantly and inteersperced with Hail Marys.
D4 must have rung Mr M because Ian G appeared from theatre and got me back into her room. Shortly after I got back into the room, which was full with about 10 people, she crashed. I was hysterical up until that point crying uncontrollably and being held against the wall at the end of her bed but just before they said she'd crashed I was enveloped in a blanket of calmness. All the worry and fear disappeared to be left with a feeling of it was all ok. I remember Kirsty holding my arm and asking if I was alright and replying in a calm and rational voice (which I couldn't have done before) that I was fine. They started CPR and injected adrenaline in her thigh because it was the only vein they could find - her heart started again. She resuscitated and whatever drugs they'd given her gave her the strength to come back and continue the fight.
I spoke to Kirsty, the ward sister, who explained that she had been all right in the middle of the night when the duty nurses had changed her bed linen but that at about 5am she became confused. They took a blood sample, which showed that her blood sugar level was very low so gave her some glucose gel orally and she recovered immediately. Then at 7am she became confused again and they gave her an intravenous dose of dextrose and again she recovered but for a shorter time. When they called me at 7.45am she was worse and they thought that I should come in.
After about an hour she was moved to ICU again and through the day made strong progress. Siobhan, again the ward sister, looked after her all day. F & J came in and we all saw a steady improvement in her; she was following people around the room with her eyes, was communicating with us, although with difficulty, and knew what was going on. She was on morphine and adrenaline to help with the pain and to support her heart and seemed to be responding well. F left at about 5pm and J went home at about 7.00pm. I sat with her reading until 8.30pm when I went downstairs for a fag and something to eat. When I returned at 9.15pm Ruth, who had looked after her on the first day she came in and a lot subsequently and had taken over from Alex at 7ish, told me that her breathing had weakened to such an extent that they were going to intubate her. This was not helped by the morphine she was on. At that stage there was the SHO, Ruth and Barbara with her – 2 other nurses subsequently came in to assist. They brought in the crash trolley and the equipment needed for the intubation and other gadgetry. The consultant, Mr N, arrived and told me that the intubation was a very risky procedure for T and that he didn't expect her to live through it. The risk was very high but they had to do it or else she would die anyway. Even then I didn't really believe that she would die, she'd proved so many doctors and nurses wrong so many times and I was convinced that she'd do it again.
Monday 04th November
I was, I admit, scared but still believed she'd be fine. He began intubating her and her heartbeat became very erratic, they commenced CPR and administered more adrenaline. I was beside her bed holding her hand for most of the procedure. After about 20 minutes of almost continuous CPR Mr N said that he thought there was no point continuing and that her heart was too weak to support her. Again just before she died a feeling of total calmness came over me – I know it was her telling me that everything was OK and she'd be alright. She died at 10.20pm exactly six months to the day she was first admitted. The feeling of loss and sorrow was unbearable. Ruth started to remove the lines etc and I rang home and told Dad, then F. I sat with her crying and praying and cursing and doing nothing but holding her hand. I went downstairs for a fag and then returned to sit with her again. F & Joey arrived and saw her individually, J was particularly hard hit. Mr N and Ruth took me to the relative's room and explained what I had to do next. They thought there would be a post mortem (there wasn't in the end, the coroner decided that given her case history it would be unnecessary) but that she had died of septicaemia. It was likely that her liver had been damaged and that she had an internal bleed, probably an ulcer had been attacked by the sepsis. Even had her heart, which had always been so strong, not failed her she would not have survived that renewed attack of septicaemia.
Dad took me home but before we left I went up to C5 to let whoever was on duty know. I saw Sonia and she was devastated, we hugged and cried together and then I left. I told the children first thing on Wednesday morning and after lunch we went back to the Hospital to see T in the chapel of rest. Jan R, the children's ward counsellor, who advised me with E right at the beginning about how to help the children cope, talked to them first with Mum & Dad whilst I dealt with the paperwork. When we saw her she looked beautiful and at peace. It was harrowing but worthwhile, I think, for all of us – it allowed us to say goodbye to her and remember her properly.
That night we had a series of short electricity cuts, between 6 and 10 the longest lasting no more than 5 minutes. I called the electricity board who said they had had no other reports from our area but would look in to it. I have yet to hear back from them three weeks later. I subsequently heard, via Mum, that power cuts are very common after someone dies – I believe she came back to see us all and that her "spirit" interfered in some way with the electricity supply – 22/09/04 it still happens but only when we are having a party!
On Thursday Tara came down from Yorkshire and she, Alex and I created her order of service. The rest of the week was spent organising the funeral and finishing unpacking etc. It was a blur really.
On Monday 21st October we again went to see T in the chapel of rest to say our final goodbyes. Mum & Dad came with us and Fr John came to pray for her soul. Again it was harrowing but again allowed us to say a final goodbye, however awful it was I am deeply glad for both the children's sake and mine that we saw her.
On Tuesday we had F's Baptism and her funeral – a combined service that was to me essential, she wouldn't have wanted to miss his Baptism. It was almost a complete blur but was I know the most fantastic service, the drunken work we put into it on Thursday was worth it. About 300 people attended and we raised £1980.00 for C5 & ICU.
I am told, though I didn't see it, that at the exact moment her coffin was lowered into the grave a gust of wind blew a large flock of crows into the air in the next door field and they circled in a mob away from the grave. The people who saw it say that they all felt it was her spirit in that mob soaring into the sky.
After the reception, which I spent hugging people in the foyer (I felt an extraordinary calmness all that day and hardly wept at all, again I felt her presence with me in an intense and very real way) we were walking past the Church, where the service had been held, and a kestrel was hovering directly above the spire. As we drew closer to the Church it spiralled down to the left and soared away. Was it her, who knows but at that moment I thought it was or at least a symbol of our love and devotion to each other.
I guess this is the end of this diary, it was meant to be a record of her hospitalisation and her journey to recovery but the end wasn't what I expected. I miss her daily and loved her deeply – perhaps too deeply. Although we only had 17 years together they were wonderful, we lived fully and loved intensely. The last six months allowed us to realise together how much we meant to each other and to express that love each and every day. I did as much as anyone could do for her; perhaps I could have done more, perhaps not. I realised on the first Friday after her death that I now know what the word bereft actually means and I feel each day as if I am missing half of me.
Two quotes sum her up for me; George Bernard Shaw wrote:
"This is the true joy in life, the being used for a purpose recognised by yourself as a mighty one, the being a force of nature instead of a feverish selfish clod of ailments and grievances complaining that the world will not devote itself to making me happy.
I am of the opinion that my life belongs to the whole community and, as long as I live, it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work the more I live.
I rejoice in life for its own sake. Life is no brief candle to me. It is a sort of splendid torch which I've got to hold up for the moment and I want to make it burn as brightly as possible before handing it on to future generations."
Emma R wrote her a letter the day after she died:
"16.10.02
Dear T,
When I think of words to describe you, I think of capable, cheerful and courageous. I always admired those qualities, but never more than through the pain of your illness and six months in hospital.
When I think of you, I think of you foremost as a loving wife, mother and daughter. It has become fashionable to think that someone who is defined by their commitment to their family is less of a person, that their own personality is suppressed. But it is not true. No one who knew you could doubt the strength of your personality. And, if you love other people, you are more of a person, not less. The ability to give and receive love is
what distinguishes man from the animals.
As St Paul put it: "Without love, I am nothing." And, as St Francis said, "it is in giving that we receive".
We will all miss you and struggle to draw strength from your example. It will be hard to emulate your qualities of capability, cheerfulness and courageousness. But, while we mourn your untimely death, and the gaping hole it leaves in the family, we are left with your legacy of love and commitment. Your illness made the family stronger and closer. And, to quote something David said some months ago, you showed us just how indomitable the human spirit can be.
Dear T,
When I think of words to describe you, I think of capable, cheerful and courageous. I always admired those qualities, but never more than through the pain of your illness and six months in hospital.
When I think of you, I think of you foremost as a loving wife, mother and daughter. It has become fashionable to think that someone who is defined by their commitment to their family is less of a person, that their own personality is suppressed. But it is not true. No one who knew you could doubt the strength of your personality. And, if you love other people, you are more of a person, not less. The ability to give and receive love is
what distinguishes man from the animals.
As St Paul put it: "Without love, I am nothing." And, as St Francis said, "it is in giving that we receive".
We will all miss you and struggle to draw strength from your example. It will be hard to emulate your qualities of capability, cheerfulness and courageousness. But, while we mourn your untimely death, and the gaping hole it leaves in the family, we are left with your legacy of love and commitment. Your illness made the family stronger and closer. And, to quote something David said some months ago, you showed us just how indomitable the human spirit can be.
