31st August: Shopping List

Up at crack of dawn to deliver Simon's car to the city for repairs, then back home to deal with the paperwork that is mounting up.
Simon achieved a goal today. One of Simon's objectives, agreed with the speech therapist, was to generate a shopping list. He achieved this today with a list of five new release DVDs that he wants me to buy! I think they had groceries in mind.... Simon generated his list from a catalogue, pointing at the ones he was interested in and amending the series numbers as appropriate. Told you he had a passion for high end shopping. Speaking of which, Rachael presented him with a beautiful new watch this afternoon, Simon was quite overwhelmed. In fact Raina was asked to give Simon the present which she proceeded to open herself!! Raina is two and a half. Later she showed Simon her animal book, and was able to tell him the names of every animal, even Rhinoceros. A budding zoologist. If she gets any cuter I will have to eat her.
I shared Simon's speech therapy session this morning. He covered quite a lot of ground: reading, writing, speaking, and drawing. One exercise involves him looking at a photograph then drawing a representation of it to show me; I have to guess what it is. I got four out of five, and I could say that his drawing skills are good for a new left-hander. This will help us to understand when Simon can't find a particular word.
Best news today, I received a letter stating that my application for Australian Citizenship has been approved. I still have to swear the oath so it may be a little while before I get my stripes, but all good.
Gerry has repainted the outside of our house this week in the face of lashing horizontal rain. I'm going to buy that man a beer.
Love Marian x

30th August: Lazy Day

Simon enjoyed his home visit again today, all up we get around 3 hours in the house. We just kicked around watching TV, chatting, and lots of cuddles. The reverse psychology did not work on Skippy, he just ignored us back....
I managed a bit of gardening this morning, in between rain showers. Our lawn is surprisingly green, but when I looked closely I realised that it was full of weeds. The rain has really encouraged them. Still better than the patch of dust that was left at the end of last summer. Many of Simon's plants are thriving and he does a tour of inspection looking closely for bugs and black-spot. The Bougainvilleas that he planted are coming on a treat, although they are vicious blighters and I am always getting snagged on them. In the Northern Territory they have a shrub that the aboriginal people call the "wait a while bush", so named because it snags anyone passing and they have to wait a while to untangle themselves!
Back to the hospital by 4.30pm. I took the liberty of resting on Simon's bed while we waited for dinner, it was surprisingly comfortable and I am glad about that.
So so result for the Hammers this weekend, Zola was so short of strikers that he considered playing himself. I would love to have seen that happen.
Love Marian xx

29th August: Supernatural

Simon was ready and raring to go for today's home visit. When I arrived Margaret and Rachael were visiting, and came armed with goodies: mexican pizza, cappucino, and chips. Then Simon had his lunch! We whizzed home in the access taxi, Simon chatting all the way about Rachael, he loves her company. The weather was rotten today so we were confined to the house and managed to amuse ourselves while Shirley went shopping. Simon finally persuaded me to watch an episode of Supernatural, which I really quite enjoyed. Just as well since we have two complete series on DVD. It is a bit scary for me, I'm squeamish about horror films - in fact my family will tell you that as a child I quivered behind the sofa when Doctor Who came on (particularly when cybermen were involved). We really enjoyed our day just knocking around the house. Skippy came a little bit closer and didn't bolt when he saw the wheelchair. We have decided to be nonchalant towards him, an experiment in reverse cat psychology.
Only chicken on the menu tonight, so I cooked up some meatballs, sauce, and rice to take back to the hospital for Simon's dinner. The other residents were very envious.
A spot of TV after dinner, then off to bed for Simon. He is coming home tomorrow as well, hoping for better weather.
Love Marian x

28th August: A friendly dog

Quite a long day for me at work today, only just made it in time for Simon's dinner this evening, when I arrived he was eating dinner in bed. Alright for some! I think he went to bed early because he had many therapy appointments today, in fact he didn't get time to have a shower until early afternoon. One of the therapies was a 'group communication session', he said it was interesting but that he hadn't joined in the conversation, just listened to some women talking about what jobs they would like to do. A purpose of these sessions is that patients assist each other with their language, since a fellow patient will have greater understanding of the difficulty involved in finding the right words. Those further down the line can also talk about techniques and tricks that worked for them. Worth a go.
The nicest moment of the day was after lunch, we dropped by the coffee shop and met a big brown dog who went straight to Simon and licked him all over. Simon was just so happy that this animal should love him at first sight. This evening we shared a joke at the prospect of Skippy giving Simon a puppy for his father's day present....
Ended the evening with a spot of TV, Simon is now a fan of 'Deal or No Deal' and gets quite involved in the decision making. I have booked the taxis for Saturday and Sunday, so there is no stopping us now. Looks like being a wet weekend, so will stoke up the fire and press the DVD player into service.
Met up with Michael, one of my research students this evening. Michael is currently wrestling with epistemology. I told him that this is part of the pain that all Phd students must endure if they are to pass their apprenticeship.....
Love Marian x

27th August: Ramps approved

The occupational therapist came to our home this morning and has approved it as being OK for brief visits on weekends, around 3 hours at a time. Phew! We were worried that the ramp at the back door would not pass, however, the OT did recommend that we do a little more work on it by installing a rubber ramp inside (made from recycled tyres). I will try to get hold of one of these tomorrow. Whilst there, the OT measured up the whole house and will make a further set of recommendations once we know more about Simon's mobility. This evening, Simon was keen to stand up and put himself into bed. I persuaded him not to attempt this on my watch!
Simon's dinner was quite peculiar: spaghetti bolognese, mashed potato and brussel sprouts. The kitchen supervisor might have been at the sherry!
We had a bill for over $1000 for Simon's pathology tests today (that's what a month's worth of lab work costs). We should be able to claim most of it from our insurance and medicare.
Simon is getting quite tired from all the therapies, today he was on the go almost all day. They have promised to let him have an afternoon nap tomorrow. Could use one of those myself. My visits are timed to coincide with mealtimes so that he can eat in the day room (rather than the dreaded dining room). I take my packed lunch with me and we eat together.
A long day today, looking forward to the weekend.
Love Marian x

26th August: Chuck another prawn on the barbie

Simon's ward put on a barbecue at lunch time today, he was very pleased - a snag and a beefburger, potato salad and veggies. Apparently Simon got a large portion as a reward for doing so well in his therapies. He scored some kind of success today, but I couldn't make out what it was - I know that he has been practicing standing, and think he may have managed to take a step. Whatever it was, he was mighty pleased with himself. Simon now routinely transports himself about the ward by pushing and steering his wheelchair with his left foot. Everybody is impressed with his motivation. We've been having a bit of an up and down with the respiratory doctor who wants Simon back on the breathing mask at night. Last night Simon refused and was very upset. They have agreed to give him a break for a week and to look for a more comfortable mask for him. There is some good kit produced in the USA, we may have to fork out for this ourselves but it may be worth it. I took our own picnic in for dinner this evening, Quiche Lorraine, Greek Salad, Strawberries and Yoghurt. So a good eating day.
The OTs come to our house in the morning to assess its suitability. Fingers crossed that we get approval to bring Simon home for his short visits at weekends, it means so much.
I was up at McLaren Vale this morning, dropped in on Mel and Pen in their new pad, it is already looking like home even with just a few sticks of furniture. The Vale is beautiful, I think it likely that we will move there if we can find the right land/property.
We finally got our insurance company to cough up for the repairs to Simon's car, they are very quick to take your premiums and oh so slow to process a claim, wriggling like babies. However, I am learning a lot about how to take on these big bad boys.
Hope your weather is better than ours - lashing rain and high winds. The cat is scared to go out of his catflap because the wind blows it back in his face! When he does go out he is regularly chased back in again by something menacing: hairy caterpillars, palm fronds, magpies - so much to contend with he is quite exhausted and has to sleep most of the day....
Love Marian x

25th August: The first fifty days

Simon has now been in hospital for 50 days, that is such a long time. So happy that we have been able to get him home at the weekend, and hoping that this will continue. The occupational therapists are coming to examine our house on Thursday - I hope that it passes their examination, I couldn't bear to have to tell Simon that he can't come home. We had a fairly good day, Simon was busy with appointments with different therapists for much of the day. He had a difficult night because they sprang another sleep study on him and put an even more uncomfortable breathing mask on. Simon and I spoke with the doctor and his nurses about this today, he should have been consulted about this procedure in advance. Simon quite clearly told his doctor that the decision about whether to continue with this breathing machine would be his decision, and he reserved his right to refuse. The doctor said 'fair enough'. I believe that if Simon feels empowered he may choose to accept the breathing machine, but he will not accept it being imposed on him. Good on yer, Simon.
Between work and hospital visits I managed to duck into the shops and buy four pairs of track pants for Simon, total cost AU$36.00 - I don't dare think about the conditions under which they were manufactured. I do know that Shirley is going to have to put in around 12 hours unpicking and sewing to make flies and shorten the legs. Shirley is a superb seamstress and absolute perfectionist - she did work for Mary Quant and Biba in their heyday, and had quite a lot to do with their success.
We have had really foul weather here, dear Gerry has been trying to paint the outside of our house, only for the rain to come lashing in and wash it all away. This morning, he arrived in a highly anxious state with a lump of gyproc on the roof of his car worrying that the rain would spoil it. I was rushing around to move the car so that we could get the gyproc under cover. In the panic, I forgot my routine and missed my insulin shot. Consequently, I couldn't eat anything until I managed to get home again. I reflect upon the impact of spontaneity versus planning and am veering towards the desirability of planning for the first time in my life (I have always understood that planning is useful, just never greatly enjoyed it).
My sister, Margaret, has been through a difficult time these last few weeks. She had a spot on her face that turned out to be skin cancer. Her GP tried to burn it out but did not get it all, so then she had to have a further 'excavation', then the worry of waiting for results to see if they had got it all. She has really been through the mill, but has still managed to support me and Simon. The good news is that it has been confirmed that they have managed to cut out all of the skin cancer, the bad news is that she now has a very large scar on her cheek. Stoically, Margaret says, "just call me scar face!". I know that I am a strong woman but Margaret could wipe the floor with me, and sometimes does....
Dealing with strokes brings many legal and financial challenges. This evening, with some trepidation I rang the HSBC Bank in England. They had sent us a letter and I had replied to it. It turns out that the person I replied to was completely fictitious. They just sign letters with a name, in this case, 'Angela C Harries, Centre Manager'. This person does not exist, they just do this to give you the impression that you are dealing with a person and not a machine. I am outraged because I wrote to HSBC giving details of Simon's condition and asking for assistance to manage his accounts. What a bunch of ........ Fortunately, I managed to get through to a call-centre in Scotland and found a very helpful Glaswegian, he was superb. You can always rely on a Scot - well educated and thoughtful. It is often said that the Scots are 'mean', I have not found this to be so. On the contrary, very generous with their time and loyalty.
We are hoping to get Simon home again this weekend and we hatched a plan today to give Shirley 'ten bob to go to the pictures'. Where there's a will there's a way...
Love Marian xx

24th August: Fish and chip supper

Knowing that there was only chicken and salad on the menu tonight, I cooked up some fish, chips, and baked beans for Simon and took them in a flask to the hospital this evening. Simon was sitting up at the dining table waiting for me. We took our own tomato sauce, and a slice of lemon. Simon polished the lot off in record time, carefully chasing the last baked bean around the plate to waste nothing. Washed down with a strawberry milkshake. He was so happy. He donated his salad to Shirley who is fond of rabbit food.

The weather in Adelaide was quite foul today, howling winds and lashing rain, so no chance of our tour around the daffodils. We repaired to our secret TV lounge in the reception area and watched the Hot Seat Millionare quiz programme. Most astonishing was that Simon made his way to the lounge, around 150 metres by himself. He has learnt to propel and steer his wheelchair with his left foot. I hovered behind the chair ready to help, but he didn't need it. He does have a bull-dozer technique when it comes to furniture. If it is in the way he just ploughs through it! I am in awe of this man, he is enduring so much and each day he pulls out something that amazes me.

We had a visit from our social worker this evening who is fantastic, she is organising for us to get subsidised taxis, and for us to be approved by Disability SA. This will give us access to all kinds of specialised equipment which we can 'borrow' from the state. The fact that they customise the equipment means that you have it on almost permanent loan. This rehab business is good.

Today's photo is of Simon and me in our beloved vineyards.

Love Marian xx

23rd August: Home Again

Simon had his second home visit today, out for around four hours including the taxi rides. Much easier today knowing what to expect and how to deal with the ramps at our house, we even managed to get up onto the front veranda. Simon sat there in the sun and watched me mowing the lawn, cheekily pointing out where I'd missed a bit. He listened to some music, watched an episode of the librarians and generally chilled out. The cat is still being a rotter, he comes to within just arm's length of Simon and lets him stroke him, but nowhere near enough for the cuddle that Simon so desperately wants with his cat. We took a stroll along our street this afternoon and met a much nicer cat that we are thinking of adopting!

On arriving back at the hospital we were pounced upon by a professor/consultant who wanted to speak with us privately. I was worried we were going to be told off for something. However, it turns out she wants to trial Simon in a new procedure using journals. She plans to expose Simon to all of the metrics that are being reported by the various therapists: speech, physio, occupational therapy, also the clinical reports. She has selected Simon because he is highly intelligent and thinks that by being giving data about himself he will begin to analyse this and make important connections. It was obvious that Simon had been particularly selected. Essentially they will create a journal / scrapbook, the opening page will be a CT image of his stroke (which I have seen but it will be new to Simon). The Professor herself looks quite whacky - jeans and mad hair, but I think she is very smart, and am pleased that she is taking an interest in Simon. There may be some wheels within wheels at work here, some of our connections may be paying off.

We may have to produce our blog as research data for Simon's medical team. Hmm.... any lawyers out there who might tell me how much they can sue for all the libel here? and what kind of sentence can I expect for aiding and abetting a car-park flasher?

Despite being very tired after his home visits, I think that they have done Simon the power of good. We are hoping that we can do this again next weekend, and soon to arrange a gathering of friends and colleagues at our home.

Simon had a disappointing end to the day. They brought him exactly the same dinner that he had for lunch - cheese salad. He was outraged, especially since the couple opposite had take-away fish and chips. This is not going to happen again, I will find the kitchen supervisor tomorrow. Don't worry, I won't be nasty. I know only too well what happens to people who complain in restaurants.....

The photo I took of Simon today didn't come out too well, so I offer you this picture of our very bad cat, Skippy. He is shameful, but does he look it?

Love Marian xx

22nd August: Simon's first home visit

Simon finally made it home for a visit today, here he is with Shirley in our front room. Sorry its a bit dark, but you can tell it's him. We really enjoyed our day. I arrived mid-morning as he was on his way to occupational therapy. I was invited to join him and learned a lot about exercises that we can practice with his right arm. A brief trip to the cafe where Simon has discovered they sometimes serve hot chips! Then back to the ward for lunch. A nervous time this because the doctor came onto the ward and wanted to see us about the home visit, I was very concerned that he would not let us go because our house has to be approved by the occupational therapists. I promised to restrict him to the patio - as you can see, I fibbed a bit... The taxi arrived, and whisked us to our home in Brighton where Mel, Pen, and Margaret were waiting, so plenty of woman-power available. They got us settled in then took Shirley shopping leaving Simon and I to have a peaceful couple of hours with each other. We explored every room that we could get into with the wheelchair, and then roamed about the garden, even popped in to visit our neighbour, Jan. Skippy was a rotter - he took one look at Simon's wheelchair - which he interprets to be a vehicle - and bolted for the cat flap, when I picked him up he scratched my arm deeply. About an hour later we managed to entice him indoors with a packet of sandwich ham (guess who's eating peanut butter sarnies for the rest of the week?). The cat started to 'mark' Simon's wheelchair, so I am hoping that he will get used to it and be more friendly the next time. With luck, the next time will be tomorrow, but again we have to get the doctor's permission. Having said that I have already booked the taxi! I returned Simon to the hospital in pristine condition, spot on time, so they should have no complaints. We completed our day with a spot of TV, and dinner (for Simon) at the hospital. Pray for good weather tomorrow please.
Happy Shurvilles, love Marian xx

21st August: Two for the price of one

Sorry, I missed the blog yesterday, got tied up in Sydney and couldn't find any cheap internet access. So here is a round up of the last two days.

Dropped in to see Simon before leaving for the airport. He wasn't too happy, left in bed too long and dying for a shower. We managed to talk for half an hour about many thinkgs including our role as educators and the meaning of our work. It essentially boiled down to this: given the extreme challenges that the next generation will face we must help them to learn how to learn. We cannot give them answers to questions that we scarcely know the nature of but we can equip them with critical and reflective thinking skills. A very 'bourneresque' conversation which found its way onto the floor of the conference of management educators that I have just attended. I phoned Simon and told him all about the conference venue: The Sebel Pier One Hotel (pictured here). It is almost underneath Sydney Harbour Bridge, opposite the Opera House and looking out over the harbour. My room was on the ground floor so I was able to step out onto the pier and sit in the late afternoon sun. For the first time, I saw Sydney as the wonderful city that people rave about - in the past it has always been lashing with rain! We had a splendid conference dinner, and met some very nice and interesting people from all over Oz, doing much the same job that I do. Margaret phoned to say that Simon had an excellent physio session, they had him standing up! This is just beyond my wildest dreams, furthermore the doctor (yes that one) thought it likely that Simon's right leg would recover. She has also tentatively agreed that Simon can have his home visit on Saturday. Fingers crossed.

Today, I got up at crack of dawn and explored the Sydney waterfront before breakfast. The City was already busy with joggers, walkers, cyclists, fishermen all out in force by 6am. Then at 8am the workforce began to arrive in droves - many of them coming in by ferry. Some very brave souls were climbing the bridge. We worked from 8 - 4.30pm, and then straight back to the airport. After some delays, home just after 10pm. It is the first day that I haven't managed to visit Simon, I can't wait to see him in the morning. He has had a steady stream of visitors in my absence, and Shirley has been there most of the time supervising meals, and accompanying him to therapy sessions. Gerry has been to the house and put some ramps outside so that we can get into the back of the house tomorrow. If it goes well, please God, then I may be allowed to repeat the exercise every weekend.

Love Marian x

19th August: Sharing and caring

A busy and productive day for Simon. He had three therapy appointments, plus a visit from a Justice of the Peace to sign his power of attourney documents (which he did without any problem). Simon and I met with the speech therapists for about 40 minutes this morning, they are very nice people. We talked about setting goals for Simon. His stated objectives are to be able to return to writing 5000 word articles and editing a journal, reading novels and commenting on technical documents, and speaking normally. While this may sound ambitious I have confidence that he will be able to do this. There is no impact whatsoever on Simon's level of intelligence, so where there is a will we will find a way. One solution that cropped up was that I might serve as Simon's emmanuensis for a while - he gives me the ideas, the concepts, and unique linkages and insights, then I write it up and we discuss whether my interpretation is what he intended. I think this could work. Liking this suggestion, Simon, typically insisted that I should share the publication credits....
Simon enjoyed a nice lunch of roast beef salad, and particularly liked the beetroot which is so typically Aussie. Beetroot is part of the nation's staple diet. It came as rather a surprise when his evening meal turned out to be roast beef salad with beetroot again. Simon declared this to be ridiculous and sent me out for a take-away (could only find a sausage roll). Someone must have stuffed up the menus today, hope it wasn't me. Simon donated his orange to me this evening. It was the only thing that he had. I will treasure it.
During lunch Simon was visited by our doctor friend, his wife and baby. It was great to see them, and Simon was thanking the doctor so much - he believes he had something to do with springing him from the stroke ward (possible).
There were some fresh flowers by Simon's bed today, thank you for whoever brought those. He does love his flowers and cards (thanks Mike, your card went down well with Simon, not sure how many nurses we've offended....).
Shirley has been diligently sewing flies into all of Simon's jogging trousers, beautiful work. Now he has demanded the trouser legs cut off just below the knee, so Shirley has to start all over again....
Our brother-in-law, Gerry is coming on Friday to fit ramps around the place so that Simon can come home. This might not be in time for the occupational therapists to do a home visit and give formal approval re safety, so if we do take him out at the weekend it may have to be to a disabled friendly restaurant/cafe, or even the shopping centre. At least somewhere where he can be free of the boredom of a weekend in hospital.
I am away to Sydney tomorrow morning, back Friday evening. I will get in to see Simon on my way to and from the airport, and have arranged for family to visit both days. If any colleagues could get into see Simon tomorrow evening that would be great. The address is: Rehab A, Repat Hospital, Daws Road, Daw Park. If anyone from UniSA does visit could you have a quick look at Simon's mini-pc and see if it is alright - he does a lot of clicking opening multiple windows and that can make the pc a bit cranky and clutters the screen. You will know what I mean when you see it. Just try to close everything back to its folders, or dump it all into a new folder called e.g. "sweep 20th August".
All good today, love Marian x

18th August: Happy Birthday to David and Francesca

Two visits to Simon and quite an eventful day. First up, a long conversation about something "missing". I spent fifteen minutes responding to Simon about what could be missing, a computer part, some clothing, money, glasses, toothbrush etc. I should have paid closer attention to his opening statement which was "there were three of them and now one of them is lost, it will never come back". Eventually I worked it out. Simon had three therapy appointments today, the first one had been missed because the phsyio was attending a meeting. He was complaining about this. It may take a long time to work out what Simon is saying, but he has certainly said it, not just in the way that you expect to hear it.
Then a situation rapidly developed in the public lounge room where Simon takes his lunch. His consultant decided this was an appropriate place to meet with Simon and conduct intimate conversations with him and me. I don't think so. This person also seemed adamant that Simon was unable to make decisions for himself despite a doctor at the previous hospital declaring him competent some weeks ago. My friends, you might have been proud of me, I put on my Union hat and defended Simon for all that I was worth. During this time, her entourage of students disappeared from view but could be heard sniggering nearby. Other patients and their visitors stopped in their tracks. At which point Simon said "What's wrong Marian?", I told him that his doctor was being uncooperative about the matter of his power of attourney. Simon faced the doctor and said "I agree that she [pointing at me] should be able to do everything, anything for me".
This doctor then walked away and said she would need to consult others at the previous hospital, she would not back down. I told her that if she could not communicate with Simon it was her fault and not his. Ten minutes later I got a message that she had accepted that Simon is competent, and could sign the power of attourney. This doctor is of Asian origin and is incultured into the 'save face' way of doing things. Now, I very well understand that cultural issues impact on the way that we work and relate to others. However, I do not accept that a person's need to save face should override their patient's best interests, particularly when Simon's dignity is so openly compromised. I am open to a debate on that question. As you can tell, I am enraged against those who cannot be bothered to spend the time to understand Simon.

After all this grief and aggravation, Simon and I decided to go out for a walk with the wheelchair (basically a tour around a large, but quite pretty, level car park). I had told him about a bottle of beer that I had in the boot of my car and Simon was keen to get to this. Just over half-way on our journey Simon needed to pee, urgent. I was completely adrift, no place to go. So he gave a wonderful fountain display in the carpark which was deserted at the time but then suddenly filled with passing traffic and all female drivers! One women put her windscreen wipers on. We laughed so much that he had to go again. By the time this trip was over we had three puddles in the car park and a lot of explaining to do when we got back to the ward. However, Simon did get to have his bottle of beer in the car park. These are such simple pleasures that we have all taken for granted. Shirley and I are working on practical solutions to the problems - Shirley is sewing madly, and I am working on technical plastics. That should leave your minds boggling. Gerry is coming on Friday to fit ramps into the house so that we can bring Simon home for a few hours on Saturdays and Sundays.
Our darling twins, David and Francesca celebrate their birthday today. "Happy Birthday to You, Happy Birthday to You, You look like a Monkey and you live in a Zoo!" This is the first time I haven't managed to get presents out in the post. I will make it up to you kids, no worries. However, you might have to come to Oz to pick up your presents...... I feel a gap year coming on.

If anyone is involved with the arrangements for Richard Castle's funeral would you kindly add this tribute from us:

"We heard the sad news about our comrade Richard Castle, and our thoughts are with his family we are so sorry for your loss. In addition to the many academic contributions that he made, Richard was also a great trade union colleague (NATFHE). In my experience, he never needed the support of a trade union for himself, but he understood the need for solidarity and, that solidarity requires some of us to be rocks. Never to be uprooted from our principles. Richard was one of those people, supporting others, upholding their rights, defending, and attacking injustice. He would always be on the picket line, and people like that were rare and brave. Like many of us he believed that workers united will never be defeated. Rest in peace our dear comrade. Marian Whitaker and Simon Shurville x"

17th August: New routines

I managed to fit in three trips to the hospital today, one on the way to work, one at lunchtime, and then the evening shift. It is only 12 minutes each way from my workplace. It was useful to get an understanding of the routine developing around Simon, also managed to help him out of a couple of scrapes. At lunchtime, I found him wedged in his wheelchair between his bed and the TV stand as he tried to make his way to the bathroom independently. I was pleased to see him attempting this, but not easy for him. There were several therapy appointments with different specialists, and Simon was quite upbeat about those describing some of his exercises.
Simon is attempting to use his laptop, a bit hit and miss. Today I found that he had managed to create desktop shortcuts to just about every file on the computer, and then multiples of those. The screen was lit up like a xmas tree. I managed to clean it up to just a few icons, but I expect to see it in a similar pickle tomorrow.
I spoke with a doctor this morning, and think that I have managed to persuade him to give permission for a brief home visit this weekend. Fingers crossed. Thanks to Jacquie for tips on local hostelries, I will reccy them and see if they have good access.
Love Marian xx

16th August: Pooh and Piglet on a very windy day

After an early start at work (we had a public open day), I got in to see Simon before lunch. I found him swathed in towels in the shower complaining bitterly that this had taken them so long to arrange. I sat with him for lunch then took him out and about the campus, a stop at the coffee shop, a tour of parts of the grounds we hadn't seen. It was an extraordinarily windy day, and Simon was quite cold outdoors. We struck upon an empty outpatients' reception area with a tv, a drinks machine, and comfy chairs. We had the whole place to ourselves and before long it began to look and feel like our own living room! Shirley and Margaret joined us there later in the afternoon, bringing him a sneaky beer which went down in a flash!
Simon had been up and about for around ten hours, and nearly fell asleep at the dinner table (this could be attributed to the beer). Just made it through dinner, then I managed to persuade the staff to put him straight to bed. He was looking comfortable with all his bits around him: magazines, TV remote, baby PC, Ipod, CD player, and now his watch (this was very important to him).
On Monday, we expect the rehab activity to start in earnest, I noticed that he has three appointments before 2pm with various therapists. I am hoping that they will keep him very occupied until I get to him. Time passes slowly in hospital, especially when you are starting to feel better. If anyone knows the Swifts ladies' netball team, would you kindly ask them to stage an exhibition match in the hospital carpark?
Love Marian xx

15th August: Agitating to get home

Simon made a telephone call this morning - he reached my Sister, Margaret by mistake but she could tell who it was. If anyone else got an odd phone call today, it could well have been from Simon. If you would like to chat to him, send me an email and I will tell you the direct line for the hospital and his bed number. I am a little worried about publishing those details here. We have been given permission to take the baby PC onto the ward, at our own risk, and Simon is very pleased with that. It won't be long before he has negotiated access for his wonderful stereo, 5000 CDs, a wide screen TV, and the cat.

At weekends, there is limited activity in the hospital and Simon was very bored when we found him. He was desperate to go outside and do something. We took a walk around the grounds, and visited the cafe twice where he managed to find a copy of Outback magazine which he enjoys. Simon now helps me to propel the wheelchair with his left hand - mighty useful on the ramps. Shirley had a go at wheeling him today and did pretty well, she likened it to a Tesco's trolley. It is clear that Simon will not be happy until he has been allowed to come home for a visit. He took this up with us and his nurses at length. We are going to meet with the doctor on Monday and see if it is possible to bring him home for a couple of hours next weekend. Simon has a fair point - if there is nothing happening at the weekends why does he need to be there. They will probably think that it is too soon, however, I have promised to give it a go, and maybe hire a private medic if needed. If he just knew that he could come home for a few hours at weekends it would give him such a lift. I can remember having similar dreams myself when in hospital for a long spell. There was nothing that I particularly wanted to do at home, just to be there in my own space. I have not found anything near the repat hospital that would be interesting to visit although I'm certain there must be a place within wheelchair distance. All those squaddies would surely have needed entertainment. If anyone knows the area, can you tell us where the action is (e.g. cafes, shops, pubs, music venues)? I observed Simon's room-mate, George, being loaded into an Adelaide Access Taxi this evening. It is a piece of cake. George was going out for dinner for the first time. The taxi driver appeared to be fourteen years old, I will ask George how he got on tomorrow.

I am going to work tomorrow for our open day, and will drop in on Simon a little earlier. I would like to see exactly what is happening at different times of the day.

We heard that there is to be a party for one of my Uncles in the UK, and we are trying to find a way of hooking up a video link so that we can all say hello. Simon met my uncle and got on famously with him - he was always attracted to crackpots, hence our marriage.

Simon would be glad of visitors, Repat welcomes people at most hours. If you could take him outside in the wheelchair he will be delighted - watch out for the ramps. If you don't understand what he is saying, try giving him lists to choose from: hot, cold, food, water, toilet, pain, can we go outside, and grab a nurse if you can't help him with any of those things. If he asks for Marian the nurses know how to contact me, just let them know.

Thought I would treat you all to one of our Brighton sunsets, now you know why we came to Oz.

Love Marian x

14th August: Simon in his new habitat

Here is Simon in his new place. We spent most of today outside exploring the grounds of this wonderful hospital. It is actually a place that was dedicated to the care of Australian soldiers who had been wounded in action, indeed the hospital continues to receive soldiers from the conflicts in Iraq and Afghanistan.

The nursing staff had planned to keep Simon on bed-rest today, but he was having none of that, and insisted on being out in the chair. We went to the cafe first, then back to the communal Dining Room for lunch. For congestion reasons, I am not allowed in the Dining Room. When I collected Simon from there half an hour later he declared "never again, they are so boring!". He was really adamant that he would never go to the Dining Room again. I have found a nicer room for him to eat his dinner in, and begged the nursing staff to save him a place in there from now on. I nabbed a table for him this evening, and he was much happier.

We also took a tour of the veteran's museum on the hospital campus. It has an amazing collection of stuff brought to life by the curator, David, himself a veteran of the Malaysian campaign. He took out the most delicate and treasured artifacts from the display cabinets and gave them to Simon to handle while he told their story. Truly remarkable things like intricate metal-worked objects and carvings made by prisoners on the Burma Railway out of old bean cans, and bicycle spokes. We only saw one section of the collection today. David has invited Simon back next week to show him some more. Great place, put the Repat Museum on your list of must do's if you are touring South Australia.

For the rest of the day we spent most of the time out in the sun, just sitting and talking. Simon had an appointment with the Occupational Therapist this afternoon, and he made a good impression there. Because he is so young, I think they are going to make very special efforts with Simon. I told them that he was keen to get in the swimming pool, and they are going to arrange that as soon as it is safe to do so.

Margaret, Mel and Penny visited this afternoon, followed by Shirley. He was pleased to see everyone and engaged them all in conversation. At one stage, he was laughing so much he was hurting.

While touring the grounds we spotted a guy whizzing around in an electric wheelchair, he was pretending to be a grand prix driver. Me and Simon made a bee-line for him. Where did you get the chair? How does it work? How did you learn to drive it? The racing driver is called John, and I think that he and Simon are going to be good mates. The best thing is that John talked directly to Simon, rather than looking up at me and he knows exactly how Simon is feeling. Just now and then God answers my prayers and sends these special people along. We will scout the rest of the hospital and find out where the action is, Simon is accustomed to working with young people and thrives on their company. Because we are way out of town in the sticks, it won't be easy for us to get to the shops, but I have promised to put him in an Adelaide Access Taxi and take him out and about as soon as I am allowed to. First stop will be our home in South Brighton where his cat, Skippy, is waiting for him.

Love Marian xx

13th August: The Great Escape

Brilliant news today, Simon was transferred to rehab this morning. I took the call as I was about to depart for work and quickly changed directions, rushed to the City in time to supervise the packing of his kit (including by now an extensive CD collection). We were both really excited. Simon went off in the ambulance while I followed on "with me ol' cock linnet". The new hospital is just beautiful, all on one level with heaps of space inside and out. The rehab section has a lot of communal spaces: dining room, TV/games room, plus a gym and swimming pool as well at occupational therapy workshops. Simon has a nice room next to the window, sharing with a chap called George who has been there for eight weeks. George is a real nice fella, and I think he and Simon will get on well. They have to share a TV (but at least it is free). In their room they have an amazing hoist that picks them up out of bed then traverses them across the room and swings them into the bathroom where they can be safely lowered into a shower chair. The staff are terrific, really attentive and all very caring.
Transfers are always stressful, and Simon was showing signs of worry this evening. The nursing staff don't hover about like they did on the ward, so Simon has to have the confidence that if he rings his buzzer, someone will come straight away (and they do). Also he has to trust that George will raise the alarm if there is any problem when we are not there. I spent all day with Simon or on the road. Picked up Shirley and took her to visit this evening before her appointment with the doctors. Just home at 7pm, exhausted but thrilled that this day has come at last.
I will try to take some more photos of Simon in his new habitat tomorrow.
Love Marian xx

12th August: Simon passed fit for rehab

Simon passed his assessment for rehab this morning, now just waiting for a bed to become free and for them to assemble some equipment that he will need. This could take up to two weeks, but at least we have his ticket out.
Today Simon had a haircut by a very sweet little girl who came to the ward. He looks very handsome particularly when sporting a pair of Rayban's and a baseball cap. I have taken a photo, if anyone can tell me how to upload it here I will do so.
We took a second trip out in the wheelchair today, less adventurous because we were ticked off for keeping him out so long yesterday. Simon ordered lunch in a cafe, and then took a tour of the mini-supermarket selecting a magazine on property prices. We did need a bit of help in the supermarket - in fact they had to move an entire display of Snickers bars for us to get round a corner, however, like yesterday, everyone was very pleased to help, also assisted me in getting Simon down a rather steep ramp (more like a nursery slope).
I took a suitcase full of clothes to the hospital today, he is looking quite dapper. While we wait for the transfer to rehab, Simon and I have resolved to enjoy the City together, there are lots of nice places that we can get to in the wheelchair. Simon would also like to catch up with friends and colleagues outside of the hospital environment - so if anyone is free for an afternoon coffee in the City, let us know. You can help me with the pesky ramps.
Thanks for the card today from Jo and Charlie, Simon sends his love to you both.
All good,
Love Marian x

11th August: A walk in the park

Simon had a fantastic day. I arrived early because we had been promised a chance to use the wheelchair. After some delay in sourcing the correct chair, Simon was dressed in his track suit, and lifted onto his wheels. We set off for the Botanic Park. As we walked out of the hospital, Simon gasped at the fresh air and the wind on his face, it was just wonderful. The weather just held off enough for us to get around the park. I must confess the wheelchair is a bit heavy for me on slopes, worse going down hill because it can easily career away from me. We made it back to the hospital cafe for some lunch which he ate sitting up at the table. After about an hour, I had expected Simon to be tired, but he wanted to go out again - shopping! First stop a CD shop, but we couldn't get the wheelchair in, however, not to be denied, Simon new of another one in a back street. We reached this but again faced a kerb, and the rampway had been blocked by a cafe using the pavement for their chairs and tables. I asked a man for some help, with which he threw the cafe's chairs and tables into the road and said that would learn them! Then we got jammed in the doorway of the CD shop. However, we finally made it, and Simon spent a happy half-hour in one of his favourite environments and purchased two new CDs. Then, wait for it, we went to the pub and Simon tasted his first beer in six weeks! I thought it safest to give him a light beer, but he quickly sussed this out and demanded a Coopers Sparkling Ale. He was so happy, and I was so proud of him. Mel joined us at the pub, then we planned to return to the hospital. As we wheeled him back he was singing "Show me the way to go home". Finally, we did another tour of the Botanic park with two wheelchairs, Shirley in the second one. We had been out and about for around three hours. A fantastic effort. Simon's doctors are very keen to get him out to the rehab hospital, we are hoping for an assessment tomorrow.
I think I will need to get some power assistance for Simon's wheelchair, having said that, everyone that I asked for help in the street was delighted to assist me, there is a lot of kindness around. Perhaps need to put some P plates on the back (L plates for you poms) and a roo bar on the front.
Many thanks to the person who brought the tulips for Simon, they are beautiful.
Things are looking up,
Love Marian x

10th August: 100%

I went for my citizenship test this morning and scored 100%. It was a lot of queueing up for not very sensible reasons. A good number of my co-examinees failed the test and have to take a re-sit. We were asked a lot about voting procedures - now, if you are not an Australian citizen, you are not allowed to vote, so without this experience it is quite difficult for a person to answer questions about it. I am from a democracy, but many migrants have no experience of this. Unfair if you ask me. Other questions were about the national anthem, responsibilities of citizenship, and Australian values including the official meaning of the 'fair go'.
Simon was up and ready for his exam today, he sat out in his chair for around six hours, desperate to impress his assessors. They failed to show up.... I am so disappointed for him, and worried that he will be too tired to repeat the exercise tomorrow when they may, or may not show up. I will try to speak with these rehab people tomorrow and tell them their story. The good news is that I may be allowed to take Simon out in a wheelchair tomorrow. I have been told to source some clothes that are easy to wear but not pyjamas. I will arrive at the hospital with a complete wardrobe. If this happens it will be the first breath of fresh air that he has had in five weeks. I plan to take him to the botanic park where there is a cafe (now under restoration after a vandal incident). They are very accustomed to patients from the hospital visiting and have good facilities. I have marked Simon on the Barthel Index at 30, doubled from my last count. His dysphasia I assess as moderate, not severe, and I am very encouraged by his writing. There is a notepad that the speech therapist has been using with him. In his own writing I have seen his name, my name, his year of birth, and his country.
I have arranged for Simon to have a haircut on Wednesday afternoon, if he agrees I will take his photograph then and try to post it on this site. He has lost a lot of weight, perhaps more than two stones, and his face is boyish again.
Someone has left a black sweatshirt behind at the hospital. If it is yours, please pick it up soon otherwise they will give it to the Salvos.
Shirley travelled by taxi today, we were on different shifts, am expecting her home soon, then off again to the podiatrist.
Mel has had a look at Hardy Avenue, her new home and approves. I am hoping that she will bring her artistic touches to the place, it is in need of that.
Love Marian x

9th August: Mel has landed

Mel landed in Adelaide today, so pleased to see her, she hasn't changed a bit, still full of beans. Simon is delighted, now he has a shopping ally.... Shirley and I went off to the hossie this afternoon, an easy drive on Sundays. Simon had managed to keep hold of his baby PC, I think he has to defend it from certain nurses who are prone to confiscating things - as if he is a naughty schoolchild. I plan to take some people to task tomorrow about some of the reports I have been getting from Simon. He gets assessed for rehab again tomorrow, and was worrying about his 'exam'. That is the way he is treating it, and asking questions like: what type of questions will they ask me? how will I know the results? what happens if I fail? do I get a re-sit? I did say to Simon that he is answering questions very well, especially when given choices to select from. I also face an exam tomorrow, my Australian Citizenship Test! I have studied the book "How to become an Australian" and tried to memorise all the dates and facts therein. I will ask Shirley to give me a quick test this evening. Once I have passed this test I can apply for Australian Citizenship, and I hope that will put me in a better position to protect Simon. Of course, the first thing that will happen is that I will get called up for jury duty. Hope its a fraud case, I love those.
Simon expressed a desire to sell and replace his whole CD collection! We have around 5000 CDs. Truth is I wouldn't part with any of it, so we will just have to double the space for his collection. Time to investigate the space in the loft... Melanie has heroically offered to put his CD collection into alphabetical order - you've got the job, Mel.
Shirley has been reading to Simon, he likes this. She had read some George Pelecanos (better than me because I can't do the American accent), also some articles from a music magazine. When you see them alone together, you can sense the closeness and the love between them.
Simon remembered my name today for the first time in my presence. That's a relief. It is often difficult for him to find the right words for things. Today he wanted the hand-sanitiser lotion, but it came out at 'hamburger'. Nearly there. Fingers crossed for his assessment tomorrow.
Please, if you visit in the evening, write your name on the notebook inside Simon' s locker. We have had some strange reports from Simon about people visiting that he does not know. We had a complete stranger the other night and I am worried about this.
Love Marian xxx

8th August:

Shirley and I got a lift into the City today with our neighbour, Jan. Sheer luxury to be driven for a change, I feel quite refreshed. We found Simon alert and worried, after some investigation we realised that somebody had moved his glasses out of reach, he was worried that they were lost. The baby PC had also been moved where he couldn't get it, apparently one of the nursing staff does not like him having it. Admittedly, his corner of the ward is getting a little busy but he does need his bits around him. He has asked for the IPod, so I will get that charged up tonight.
We had a lovely visit this arvo from an Adelaide Uni colleague, she was really impressed with Simon's speech and he had a laugh and joke with her. She brought him a cappucino, one of his favourite tipples just now.
I mowed the lawns this morning, they are looking pretty good, appreciating the wet weather. We have just a few weeks of winter left, then we will be able to pack away the woollies.
I watched the first episode of the new series of the Librarians this morning. It is a scream. I took a copy in for Simon to watch, he loves it.
Mel arrives tomorrow, we are so looking forward to seeing her again.
Love Marian xx

7th August:Simon sends his first email

Very late arriving at the hospital today, although Shirley had been in earlier by taxi. I took the train from Brighton, and was lucky to be sitting next to a very kind chap who woke me up when we reached Adelaide, otherwise I might have ended up in Noarlunga. Simon told me off: "what did I say to you" were his first words. Can't help it, I need to see him. Next week I am in Sydney for two days so that will be a big gap.
I managed to fix up the baby laptop with the VCL? software (it has a traffic bollard as a symbol), also got it internet ready and anti-virussed. So now Simon has some movies, and favourite TV that he can watch . I set up the mouse on the left, but kept the button sequence right-handed because it seemed more intuitive to me (as a natural right hander). Simon is trying to use it, and with some practice he will get there. He has certainly mastered the CD player. He asked to send an email to Asher dictated through me. I recorded it exactly as spoken. I don't think it will be long before he can do this completely independently.
Margaret, Gerry and baby Raina also visited today. Raina is so lovely, and she relates to Simon with such joy and innocence.
There was one other visitor, a complete stranger that Shirley had got chatting to in the coffee shop. She arrived on the ward while I was there - as mad as a hatter, and ready to settle down and tell Simon her life story. I booted her out. Imagine that you are a stroke victim and an unkown crackpot comes to visit you and you can't do anything about it? Familiar crackpots are, of course, acceptable otherwise he would have no visitors!.
I met with another of my research students today. He is undertaking an heroic project aimed at cleaning up the behaviour of financial planners in Australia. We are approaching this from an HR perspective (motivation, remuneration and reward, recruitment, selection, training, development, feedback, and discipline). There will also be some structural and regulatory matters that are of concern. Any colleagues, especially UK, with experience of this type of thing please get in touch, we could do with any recent documentation from the UK professional bodies (Chartered Acc, ACCA, Financial Planners Assoc etc).
Skippy had ham for breakfast and is now pretending that he loves me...
Love Marian xx

6th August: Capuccino boy

We successfully got Skippy to the vet today. Shirley and I had been plotting since early morning to get him into the catbox - he had already spied me cleaning it in the shed and was on full alert. Skippy associates the catbox with long-haul flights and several weeks in quarantine. When it came to it, Shirley picked him up and he went in like a lamb. The vet was very pleased with him, he is rather magnificent for his age, and gave him a clean bill of health. I pruned the roses, and earthed up the potatoes, then off to the hossie.
Simon was in a much better frame of mind today, and very chatty. He is learning to go without supplementary oxygen during the day, and accepting the CPAC mask at nighttime (he had been beligerent about this). This is one of the goals he has been set to get to rehab. The others are improving his balance in the chair, and assisting himself to get out of bed. The next assessment comes on Monday.
He despatched me to buy a capuccino from the coffee shop, I got this right today, and he really enjoyed his coffee. Unfortunately, I messed up on the baby laptop. I had spent ages charging it up and loading movies and TV episodes on to it, and was so pleased with myself. We switched it on in the hospital, clicked on one of the movies and it was audio only, no video. Somehow, I've got to work out how to download some movie playing software onto this machine - but I don't even know how to connect it to the internet. Aargh.... Today's CD selection was more successful, three out of four gaining approval: more Butch Hancock, Linda Ronstadt, and one I'd never heard of. Little Richard got the thumbs down. Sorry Richard.
Simon noticed that I was tired today, attempting to lie down in his bed probably tipped him off. He gave me orders to take the day off tomorrow. In fact I will be at work most of the day. Shirley will go in by taxi. If I obeyed his instructions, it would be the first time in a month that I have not been to visit. Maybe I'll just hop on the train tomorrow evening. I promised to love and honour, but not to obey!
Simon had not spent any money yesterday! This is completely out of character, and I suspect he was asleep when the trolley came round.
Shirley has a bad foot, and the podiatrist has given her a plastic boot to wear in bed (not a Wellington boot, a type of splint/brace thing). Poor thing has had a heel spur for several months and not a single doctor has picked it up before now, it is immensely painful. She is going to need to rest up quite a bit to give it time to heal.
I stopped on South Terrace today and found the bit that had fallen off our car when Simon had his incident. Some of the damage to the car must have occurred at exactly that spot. Fortuitously, this gave me the experience of a new route out of the East End of the City - it is much quicker if the traffic lights are forgiving.
Shirley had a scare with her bank account today. The ATM kept refusing her card, and there could be no discernible reason for this. When we got home she rang the bank in England and they had routinely cancelled her card because they noticed that it was being used overseas and they were not sure if it was being used fraudulently. They say that they do this to protect the customer. Hmm. All in all, a very trying day for Shirley, hoping tomorrow will be much better.
Concerning visitors. If Simon is likely to recognise you, then by all means you are welcome to visit. He is capable of telling you to clear off if he is fed up. Usually this is a polite "I think you should go now". If you are unsure, just ask him if he wants you to leave, he will say yes or no. Note that this is a men's ward and the men are very ill, so you must not be squeamish or easily offended. You may be able to pick up some of Simon's language, but if not, keep talking he certainly understands you. It would help me to know if anyone has visited, there is a notebook in his locker where you could write your name, I can then remind him about your visit the next day.
All for now, Love Marian, Shirley, and Skippyxx

P.S. Skippy is also known as Professor S. Orlando for anyone who is still searching for the reference in the acknowledgements from Simon's keynote paper...... own up, how many of you fell for that????

5th August: Simon plans to go shopping

Simon was upset when we arrived today, he said somebody had been nasty to him, they were angry with him but it wasn't his fault. We tried to get to the bottom of this but could not identify who the nasty person was - possibly a grumpy nurse, maybe he had tipped something on the floor. I did what I could to settle and reassure him. Whoever upset him can feel thoroughly ashamed of themselves.
This did unsettle him and he was not willing to do a session with the speech therapist today. She has arranged to come back tomorrow. However, the speech therapist was able to tell us quite a lot about his condition (Dysphasia) and Simon understood everything that she was saying. Most importantly, she explained to him that his intelligence was unaffected, just his ability to reach the right words and express himself that was troubling him. Numbers coming out instead of words is quite typical apparently. The registrar from the rehab hospital came to assess Simon this morning and said he is not quite ready, but will return to assess him again on Monday. I have explained to Simon what we need to achieve and how he needs to work with the physio to build his strength.
We looked at the blog on the computer again, this time reading backwards from yesterday for around a week. He was very pleased to see familiar names from the past, Helen, Jemima, Celine, several David's, and of course, Asher. He has asked me to load some movies onto the computer so that he can watch those when there is nothing good on the TV, I will attempt that tonight. Problematically, we are dependent on battery power in the hospital, so we only get a two hour run on one battery.
I have mentioned that Simon does not approve of the free newspaper that he is given each day, "The Advertiser", and I told him that I had been trying to source a Herald Tribune. At this point he became quite animated and I eventually understood that there were loads of lovely things he could buy but he doesn't have any money! It transpires that a trolley full of goodies is wheeled into the ward every morning, and Simon has been desperate to make some sort of purchase, but has been financially embarassed. He said that he had been trying to tell me this for days. So sorry, Simon, I should have known that you were desperate to go shopping. So now he has some cash and can go on a spending spree. I expect to see the trolley denuded before it reaches the next ward....
I took a good cup of coffee (from a proper coffee shop) up to the ward for him (he did ask for Black Coffee) but when I gave it to him he said "where's the milk?". So I got ticked off. However, he really enjoyed it, and it did seem to make him more alert.
I had another useful morning at work with a research student making good progress, a real enthusiastic man, originally from Liverpool and with all the wonderful power of expression that goes with that heritage. Another meeting with an undergrad making less progress but a jolly nice chap. Skippy goes to the vet tomorrow - hope he won't give us too much trouble.
Am going to have to re-think the driving into the City business. I am getting tired and stressed out by the traffic. Shirley and I may try to take the bus tomorrow. Not ideal because there is a bit of a walk for Shirley at both ends; we will take it slowly.
Some rotters devastated the pristine Botanic Gardens in Adelaide last night. They stole a construction digger and went on the rampage, finally ramming the little garden restaurant where I was planning to take Simon for his first outing when we get him into a wheelchair. The boys who did this had better not be English or I will die from shame.
Just when I called the Mumbai Stock Exchange it took a dive, don't pay any attention to me....

Love Marian x

4th August: A visit from Raina

Simon had a visit from our great-niece, two year old Raina. She is as bright as a button, and very keen to chat to Uncle Simon. She stood up on a chair beside his bed and told him all her news, also fed him with strawberries. When Simon complained of pain in his leg, Raina went to kiss it better, leaving a tell-tale strawberry mark on the blankets. Margaret and Gerry are babysitting Raina for the week, they will be exhausted.
There seems to be some improvement in the DVT, and he has been out in the chair again today for a couple of hours. We looked at his email on the computer (not the work email), and he dismissed most of the new stuff in his inbox as advertising material. He took an interest in a request to participate in a survey about Corporate Social Responsibility, and said he would fill this out tomorrow.
Later today, a colleague from Flinders who is also a JP came to witness Simon's signature on some documents. Simon managed to sign his full name with his left hand, and he understood what the documents were for.
Most encouraging is that a senior registrar is coming on Thursday to assess Simon's readiness for rehab. The physio was very upbeat and thought it possible that Simon may be able to go soon. I get conflicting stories about this, but Simon was delighted with that news.
We had some long and involved conversations today, and Simon coped with numerous visitors. He is without the breathing mask during the day now. Simon had a new number today 'zero-one-one', it doesn't make sense as binary code but could almost be the beginning of an international dialling code. The fact that he gives them as separate digits does suggest that they are not mathematical numbers (in the easy sense of those words). In fact Shirley thinks she had a conversation with him recently about not being able to get her mobile to dial the UK, perhaps he was replying to that. If that is so, then he is perhaps remembering and dealing with questions that he was asked several days ago, storing them up until he finds the answer.
Simon told me to sell the car (the Camry) and buy something more suitable. I reckon I could trade it in for a go-faster stripes whizz-bang wheelchair/go-kart.
Had a good meeting with one of my research students this morning. She is hoping to look at Employee Development/Committment in Indian Hi-tech Corporates (not call centres), and how this model fits/is derived from cultural complexity. I have a feeling that the West might be able to find some valuable lessons in this model. However, the same was thought about Japan, but only parts of that model were truly transferred (mostly technical and process). The Mumbai stock exchange hit a high today, just maybe they are doing something right (along with Sao Paolo, Shanghai and Mexico if anyone is interested in this type of thing).
We are remembering Frank Whitaker today, and the daffodils here are "fluttering and dancing in the breeze".
Love Marian xx

3rd August: Simon reads this blog

Simon had a good day, he was very chatty and his concentration span is increasing tremendously. I took the laptop and read him the blog from Day Two to Day 7, plus all of the comments. I put the screen on his over-bed table, and ran my finger under each word as I spoke them. Then I showed him the ICICTE pictures on the website, and read through the powerpoint slides from his keynote. Simon was absorbed by this for a full two hours. Just a few weeks ago his concentration span was around one minute. He even noticed that at least one of the powerpoint slides was not his own creation - it was one that had a heading but no script in the draft that I found on his computer. I apologised to him and he explained that there is a more recent version of his slides that I failed to find. Simon has not changed so much; he is still a very clever man, and a perfectionist.
I got taxis in and out of the City today, and it was such a relief. I had been getting so tired by the driving. I won't take taxis often because it is too expensive.
Simon is getting choosy about his food, he now consistently refuses the custard that they bring him for an afternoon snack. I am gradually replacing things from home, today he had fat-free greek yoghurt, a strawberry and banana milkshake, and a slice of steak pie from our favourite bakery. He was really happy about all that. I was worried that the meat might get stuck in between his teeth, and set about trying to clean his teeth (I am terrified that he will get toothache and not be able to tell us). Simon took the toothbrush and did this for himself. These sound like very basic things, but you don't know how important they are to me and Simon, it is all about dignity and independence. He is taking more notice of his right hand, and I was convinced that I saw him move his arm independently when I first arrived. I could be wrong about that, my mind has played some tricks on me recently.
Simon has been listening to CDs at the rate of four per day, and had the sense to tell me to get some new batteries out in readiness. Rick, in the opposite bed goes to Hampstead tomorrow. He looks so happy about that; his family too. They were telling him that he was going to get very tired at Hampstead because the rehab teams work you so hard. I long for the day when Simon gets his release.
Shirley and I are having Pie and Mash for tea, scrummy.
Love Marian x

2nd August: Butch Hancock prevails

I selected eleven CDs from Simon's collection and took them in for him today. Universal approval! Not sure if I got lucky or have got better at reckoning his eclectic tastes. Butch Hancock got the number one spot, wonder if this blog might push up the demand for his recordings. Simon was able to load a CD by himself, and through a process of trial and error he finds the start and stop buttons (these are small and difficult to see). We had some deeper conversations than usual today, Simon is worrying about the length of time that he has been in hospital and whether things will improve. He told me he didn't want to be dependent on me. I explained that this was not the case, financially, and at present the hospital attends to most of his needs. I tried to explain the goals that he needs to achieve in order to get transferred to rehab, this included sitting in the chair displaying good balance, and being able to get out of the bed without so much assistance. Simon understood all of this and seemed willing to work towards those goals. He was dejected when I told him honestly that he might be a long time in a wheelchair but perked up when I explained that I would have the wheelchair designed Formula 1 style, with the seat perfectly moulded to him. I have a design in mind already, electric powered (possibly solar) with inbuilt wireless computer, Ipod, phone, surround-sound speakers in the headrest, monster tyres, alloy wheels and go-faster stripes just need to find a manufacturer with a sense of style and humour.
Rick, in the opposite bed, may go to rehab on Tuesday. He was wearing his new track-suit today. Simon wants a track-suit as well, and seems to think that if he has one he will be able to go to rehab. Have track-suit, will travel.
I spent the morning filling out all of Simon's visa forms, these need to be lodged very soon, and I have a Justice of the Peace coming to the hospital on Tuesday to supervise Simon's signature. He was able to write his name again today. Also he wrote a sentence which started: "I would like to ... " I couldn't make out the rest. I am going to take a laptop tomorrow and see how he goes. I know that his mind is still good because he insists on me taking away the rag of a free newspaper that gets delivered to him each day. "Rubbish" said Simon. Quite right, I am trying to find a supplier for the Herald Tribune (from USA) which he particularly likes. There are still times when he makes bizarre (for me) connections. For example, today he gave me the number 3838, this does not mean anything to me but if anyone out there recognises the significance of that please sing up. Malcolm, may have some insight here, his brain has spells of switching to higher mathematics and physics. If I can make the connection I can easily cope with this, maths is natural territory for me.
His nurse had arranged to get Simon out of his bed for his evening meal, and again tomorrow morning for a shower, so Simon will be busy and should sleep well.
Poor Skippy, our cat, got locked in the shed all night (my fault), I heard him wailing when I got up at 7.30am. He shot out like a rattlesnake, then proceeded to wolf a bowl of kangaroo mince faster than I have ever seen him eat. This done, he went to Shirley's bedroom to dob me in! Little does he know that he has to go to the vet on Thursday for his vaccinations. Shirley is going to help me to bundle him into the cat-box but I expect to be well scratched, and he will show me his dot for at least five days...
Some advice for anyone who's interested. Make sure that, in addition to making a will, you appoint someone to have Enduring Power of Attourney on your behalf. This is easy to do when you are well, most people nominate their spouse, or a trusted friend / relative likely to outlive them. It costs very little to do, in fact in Australia you can get a form from the Post Office and just have it witnessed. Simon had not done this, and so I have to apply for a hearing with the guardianship board and provide detailed reports about his medical condition, his financial situation, our relationship, and other interested parties. It will take weeks to do this. So get yourself an EPA right away, even if you are only 18 years old.
My love, Marian x

1st August: Mel's birthday

First up, Simon says "happy birthday, Mel"! Also from me. We are counting down the days until you land in Adelaide.
Simon had a nice quiet day, he had a shower this morning, and a very good close shave (an expert nurse with the razor). Our doctor friend (I will not use his name here, he is bound by oath) met us at the hospital with his wife and their two year old boy. Simon was quite interested in the baby who was beautifully behaved. The doctor spent some time with Simon and said that he had made really good progress. The DVT is one of many setbacks that we might expect, but he explained to Simon that, with treatment, the blood clots would eventually dissolve. Also there is a new drug for treating DVTs that is approaching the end of its trials, and may be available very soon. This could be far better than existing treatments and will help a great many people currently stuck on Warfarin (spelling?). The doctor explained to me that we might expect improvements in Simon's condition over the next two months which is longer than I expected, these improvements are most likely to be in terms of increased brain plasticity (this does not mean that his brain turns to plastic, it means that the right side of the brain learns to take over some of the duties of the left side). Simon is not very aware of his right side at the moment, and we need him to pay more attention to it. The physio was trying to get him to do this yesterday, e.g. by encouraging him to massage his own hand. The breathing mask is off all day, which is fantastic for his communication. Simon had quite a lot of questions: is there hope? being the most fundamental. I was reassured by our doctor's visit, and am convinced that we still have a long way to go on this journey. He did tell me that to move Simon to another hospital at this stage was not advisable because Simon has become accustomed to the team treating him, and to the environment. A move would probably traumatise him, and any receiving team would have to learn about Simon from scratch. Also I was strongly advised not to send him near any private hospital because they have none of the specialisms that Simon needs. The assessment for getting into rehab will include Simon's ability to get out of bed with limited assistance, and his ability to sit up straight in a chair without risk of falling. He is some way from being able to do these things, although as his weight drops I think it will be easier for him to move. I am going to need to learn some lifting techniques, at present he is about twice my weight but I have seen nurses smaller than me lifting him successfully so there is a definite knack to it.
Simon must have had a visitor last night or this morning because there were some comic books left for him. These were great, I read the first chapter of the marvel with him, he was completely engaged. Thanks to whoever brought these in. This evening he went through his stack of CDs selecting those that he wanted to keep and others that I could take home. I have the task of taking in a new selection tomorrow. He also asked me to change the batteries on the CD player. I asked him about the laptop, he said he would like to try this, so yet another toy will arrive on the ward. This makes me smile a little. Our house is littered with media devices (cables everywhere) and Simon's corner of the ward is starting to look like an extension of his living room! I think there might be a way of setting up the mouse for a left-hander. I will look into this.
Raina, our two year old niece, has donated one of her tommee-tippee spoons to Simon (it has a bend in the handle which makes it much easier to scoop up food). I love the way that kids respond to people even when they are very ill, no inhibitions, and boundless optimism.
I filled out Simon's menu for the week today and he was able to make his own selections - grimacing at some of them (you wouldn't chuckle).

Asher if you are reading this, I need a document that you may have, can you look at your email?
Love Marian x
P.S. When you visit Simon, can you write your name in the notebook inside his locker. I ask him if he has had any other visitors, but he cannot remember. If I know your names I will be able to jog his memory.