Another day of recovery. Isobel slept on the sofa all night, I slept on the chair alongside. Isobel was very tired in the morning and moved into the hospital bed. She spent all day in it, sleeping and watching television. Euan slept in the middle part of the day, I had a sleep at the end of the afternoon, we are almost back to being funtioning human beings.

Isobel had quiche lorraine, broccoli, peas, chips and beans for dinner. She fell asleep at 10pm.

The previously agreed plan for Isobel to use the hospital bed did not work out. She slept on the sofa until 1.30am; then refused to use the downstairs toilet or bed. This was the beginning of six hours of incomprehensible speech, swearing, punching and slapping. Neither Isobel nor myself got more than a few minutes sleep, Euan did not do much better trying to sleep on the landing floor. By the morning Euan and I were wrecked but Isobel calmly went downstairs and lay on the sofa and watched television as if nothing had happened.

Euan and I took turns to get a few hours sleep during the day. Isobel dozed a little at times but did not seem particularly tired. Apart from a quick trip to the shops by me, none of us went out today. During the day Isobel's balance and walking seemed better than it had been for the past week. Her speech was difficult to understand most of the time.

Isobel had steak pie, mashed potato, sprouts, brocolli and peas for dinner followed by raspberry cheescake. In the early part of the evening she agreed that she would use the hospital bed, but later on said she would never use it. She fell asleep on the sofa at about 10pm.

As I was still working downstairs, Euan started to get Isobel up for her toilet visit at 1.30am. As they talked she began to wet the bed and as Euan tried to move her onto the commode she wet a large area of the carpet. Euan was particularly upset as his mother gave a running commentary on what she was doing, apparently half asleep. After the usual long negotiations we got her cleaned up in the toilet (she loathes using the commode) and settled in the spare room. It took me until after 3am to clean everything up and verify that the washing machine has died permanently.

Isobel woke after 7am, but had already soaked the spare room bed - this does not have any waterproof layer and the mattress was affected. I cleaned her up and moved her onto the downstairs sofa where she had breakfast. I had forewarned my brother a couple of weeks ago that our washing machine was likely to fail suddenly, so I left Euan to look after Isobel and took the pile of washing round to Keith and Liz.

After an early lunch Isobel dressed and I took her in the wheelchair to Keith's. We watched a recording of this mornings Springbok: Wallaby game, then the end of the Challenge Cup. We came home at just after 4pm; I had bad asthma and struggled with the wheelchair on the uphill sections where I have never had any problems before - this is entirely the result of extreme tiredness.

Isobel had leek and bacon flan, Brussel sprouts, chips and peas for dinner, followed by ice cream. Tonight she will use the hospital bed in the living room for the first time (as the others are still out of action), but dozed and watched television until after midnight.

The day started with another wet bed - although the hospital bed is in place downstairs Isobel will only start using it when she is not able to manage the stairs at all. Isobel breakfasted, bathed and dressed without problems, she cleaned her teeth without assistance this morning.

June came in the morning, bringing bakestones which we ate within the hour. She helped to sort out a pile of education books and papers which had come to light in the reorganisation of the living room, and left before lunch. After lunch Isobel felt tired and spent most of the afternoon lying down, but not sleeping. (I however did sleep, I was totally shattered all day as a result of having thirteen hours sleep in four days up to last night.)

Isobel had chilli con carne with potato wedges, broccoli and baked beans for dinner, followed by blackcurrant cheesecake. In the evening Rhoda and Iona 'phoned, Isobel spoke clearly to then but instantly the 'phone conversation ended she lapsed back into incoherence; her speech had been fairly good until late afternoon. Isobel was asleep by 11pm. For about a month now the washing machine has shown signs of imminent main bearing failure - given its age this will not be economical to repair. As the machine has often been running for ten hours a day or more, the failure is not unexpected and seems to have occurred today as the last wash was barely spun at all.

I finished clearing the back part of the living room at 5.45am. I had a premonition that the hospital bed would arrive very early (it was promised "before 1.30pm") so I got up at 7.15am to clean the carpet and piano, then started on the windows but at 8.15am the bed arrived. Isobel had passed the night smoothly, but at about 8,30 as the bed was being put together she woke and the bed was found to be thoroughly soaked. After I had cleaned Isobel up I was instructed in the mysteries of the hospital bed which requires two power supplies. Isobel will not use this bed at once but it is ready for when she is unable to climb the stairs.

Isobel breakfasted , bathed and dressed without problems. Mobilty and langusge were about the same as yesterday. Access to the hospice car park was blocked by a lorry so we had to park on the road. This is about sixty yards away - much too far for Iobel to walk now, so it was an ideal excuse to take her in using the wheelchair. There were a lot of harsh words on the way in, but it passed off with fewer problems than I had expected. Nor was there any problem when I collected her at 3pm.

After returning home Isobel watched the whole of Shakespear's Richard III on DVD. Unfortunately at the end she was discovered to be sitting on a very wet chair - who says Shakespear does not grip your attention.

Isobel had chicken in basil sauce with chips and peppers followed by blackcurrant cheescake and a Belgian bun. By 11pm she was asleep.

Carrying on from yesterday's blog, Isobel woke up before 2am and wanted to continue watching television, so I settled down in a chair alongside her. I fell asleep and woke up at about 4am, Isobel was asleep so I turned the T.V. and light off and went back to sleep. Isobel woke at 6.30am and I helped her upstairs to bed.

After this we made a slow start in the morning. Isobel breakfasted, bathed and dressed without undue problems. We drove down to Kings Hill near Maidstone to visit Chris Richmond, Isobel's old head at Hook Lane. We had an excellent lasagne for lunch and Isobel had a glass of red wine with it. We left for home shortly after 3pm. Isobel's speech was a little better than in previous days.

After the heavy lunch, we just had pizza for dinner. The sofa was wet again, the computer room is full of cushions drying off after being cleaned. Isobel went to bed at 10pm and quickly fell asleep.

I overslept this morning and found that Isobel had woken up and gone downstairs on her own at about 7am - very worrying as she is very unsteady on the stairs. She had left a large wet patch on the bed and had also wet the sofa downstairs, despite large capacity pants. There had been another long discussion at about 1am with Isobel insisting she wanted to sleep in wet pants and did not want the toilet. After this had been sorted out and she put on new pants I had not expected more problems. Iona 'phoned at about 8am to say that her rescheduled flight was due to leave at 9am. Isobel's preparation for the hospice went smoothly and she was delivered at 10.15am.

I spent the morning sorting out some of the rubbish in the living room and moving other stuff around the house to try and make room for some of the contents of the living room. I do not understand why a non-musical family such as us possesses a piano, cello and harp! Euan has not managed to rationalise his piles of belongings that have been in Iona's room since January, so the plan to use this room to store a lot of stuff from the living has been abandoned and somehow it will have to be shoehorned in elsewhere. Jon phoned in the afternoon to say that Iona had 'phoned (using April's 'phone) to confirm she had arrived safely in Corfu, but neither (!) of her 'phones was working and she wanted Jon to sort this out !!!

I picked Isobel up from the hospice at 3pm. Tracey was keen to lend me a wheelchair, obviously concerned by Isobel's worsening balance and walking. I explained that we already had one, but Isobel was resisting using it. What is becoming difficult I think is that Isobel is no longer safe to walk the few yards to the toilet in the hospice on her own. I think it will only be a couple of weeks before Isobel has to be delivered to the hospice in the wheelchair.

Iona 'phoned later, but spent most of the call grumbling about her 'phones. Isobel had beefburgers for dinner, followed by blackberry cheesecake and a Belgian bun. She went up to bed at about 10pm and had the usual argument with me and Euan about the need to use the toilet and clean up. I was still packing things away upstairs at 1am when Isobel woke and decided to come downstairs for a glass of fruit juice, then settled in front of the television but fell asleep after half an hour.

A peaceful night. Isobel got up at about 7.45am; breakfasted and bathed without any problems. Departure for the hospice was delayed as I had to make two trips to the chemist's to sort out one of Isobel's tablets; but we finally delivered her there at about a quarter to eleven.

Iona and Jon came over in the morning to finalise the preparations for Iona's departure for a weeks holiday on Corfu with her friend April. Jon has drawn the short straw of looking after Iona's dog. Iona and Jon picked Isobel up from the hospice at 3pm. Isobel had been very unsteady on her feet during the day. Iona and Jon left at 4pm.

A little later in the afternoon Dr Andrew Williams from the Ellenor Trust arrived to examine Isobel. He questioned her in detail for over an hour; and Isobel behaved in a normal way and did not minimise her symptoms. After the first couple of minutes she was not able to sustain continuous intelligable speech and Dr Williams probably got a fair picture of her condition. He knows Dr Sadler and will discuss Isobel with her. We discussed the mismatch of scan evidence and symptoms. I gave Dr Williams an account of the meeting with Professor Hawkes and showed him the report of that meeting. Dr Williams was inclined to feel that as a scan is due next month we will end up waiting to see the outcome of that before getting a better idea of what is going on. In the meantime he will discuss possible variation of steroid levels with Dr Sadler. We agreed that, as there were no dramatic ill effects during the four days when Isobel refused to take her medication, there was now possibly scope to decrease the steroid dose as an experiment. Dr Williams will also talk to Sue Lock about our meeting today.

Isobel had steak, chips and peas for dinner, followed by chocolate pudding. She fell asleep at about 11pm. Iona 'phoned shortly afterwards to say that she was spending the night in the Gatwick Hilton as the plane had broken down.

The night was disturbed by a very long discussion concerning the need for Isobel to change her pants and go to the toilet. When these incidents occur they can take an hour or more to resolve. Anyway, no disaster occurred and Isobel breakfasted before 8am. After breakfast Isobel felt very tired and did not get bathed or dressed. She came downstairs and lay on the sofa, watching television and drinking cups of tea. Unfortunately she was so comfortable that she resisted all attempts to move her for three hours by which time the sofa was soaked again. Isobel resisted all efforts to bath her during the day and personal hygiene is becoming a pressing issue; although refusal to clean teeth is being overcome with industrial strength mouthwash.

Iona came over in the morning. She has sorted and repacked all her mother's jewellery into about 60% of the original space, following on from her success with the clothes. In preparation for her holiday Iona has had some kind of spray tan applied to her, the resulting colour would be a pretty good match for Gavin Henson in the days when he was nicknamed "Tangoman". (In other words - orange).

We had a very large curry for dinner at about five and Isobel had half a glass of white wine and half a glass of red wine with it. Iona went home afterwards to pack for her holiday and all Isobel wanted to eat in the evening was some yogurt.Isobel's walking and balance was a little better than yesterday, her speech about the same as yesterday.
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Another day without a major crisis. Isobel was awake by 8.30am and Euan looked after her and gave her breakfast while I drove to the dump. Isobel dressed herself and we went by wheelchair to my brother's just before 11am. We watched the Australia vs New Zealand rugby, then some cricket. After the usual snacks and beer we returned home soon after three o'clock.

Isobel's walking and balance was perhaps a little worse than yesterday, her speech about the same as yesterday. Isobel had chicken casserole and chocolate pudding for dinner. In the evening she watched television for a while, and fell asleep on the sofa.

A better day today, and a relief to have little to report. Isobel's walking and balance was significantly better today. She was able to manage going up and down the stairs on her own about half a dozen times. She did have two minor falls in the bedroom however. Her speech was still variable, but often vague and difficult to understand. She was generally cooperative when we were caring for her today.

Iona came over in the morning. She sorted and reorganised Isobel's clothes while I started to clear the living room. The latter task is a nightmare as lots of stuff was moved here from the bedrooms when we had to accommodate the contents of Euan's flat in Bishops Stortford at the start of the year - by the end of the day I had a carful of rubbish to go to the dump tomorrow and a couple of bags of stuff for the Hospice charity shop. Iona had taken home a carfull of her belongings and a box and bag of Isobel's jewellery with the aim of reorganising it into a single box. While Isobel has been ill we have left a lot of things unchanged since Isobel and I were working full time; now with pressure on the space in the house with two rooms used mainly for Isobel's care we need to clear out objects that have no function.

Isobel had chicken in basil sauce for lunch. For dinner she had chicken kiev, chips, peas and brussel sprouts followed by chocolate pudding. Isobel did not go to bed until after midnight, although she had dozed on the sofa for almost an hour earlier. I realised at midnight that I had still not repaired the leak from the upstairs toilet cistern caused when Isobel crashed into it yesterday, it will have to wait until tommorrow.

Today has been a very difficult day. It started well enough at about half seven, Isobel came downstairs without difficulty, breakfasted and took her medicine. Afterwards she said that she wanted to lie down in bed, not to bath or get dressed; this would not normally be a problem. This was followed by four hours of intermittent verbal abuse and refusal to go to the toilet. In the course of the morning the bed and the quilt were soaked in separate incidents; also the bedroom carpet and the commode (Isobel sat on it without taking the cover off!). With Euan's assistance she was eventually convinced to take a bath in order to clean up. After bathing she came downstairs to dry off, but immediately wet Euan's sofa just as she assured Euan she was not going to do this. After lunch it was found that Isobel had ripped her pants and made another chair wet.

The district nurse called at about half four and observed Isobel's walking problems. It was agreed that within the near future the stairs would become a major problem and Isobel will be based downstairs all the time. A hospital bed will be ordered and installed in the living room. She discussed at length with Isobel the need to avoid sitting in wet pants, Isobel minimised the problems she had and was only a little bit rude to us during the discussions; she agreed to co-operate in changing pants etc. Before the district nurse had left the drive, Isobel was verbally abusing the children and refusing either to go to the toilet or change her pants. When she was eventually convinced to move, it was found that she had wet the chair she was sitting on.

Iona and Euan went to the shops and Euan cooked a splendid chilli con carne afterwards. Isobel went up to bed at about 9pm and was asleep shortly afterwards.

To our great relief Isobel was rather better today. During the night she needed a lot of support whenever she got out of bed. In the morning she was able to walk independently for short distances. Her legs were easily able to support her weight, but she was rather tired and did not feel like doing much that involved an effort.

Jane came to see Isobel in the morning and they chatted and ate iced buns. I drove Jane home and Isobel came along for the ride. After lunch Iona arrived and she and Euan did the shopping.

Isobel had chicken and mushroom risotto for dinner followed by apple crumble. Over the course of the day her walking has become a little worse as she has got more tired, but by 10pm it was still much, much better than yesterday. Her balance was also considerably better. Over the course of today Isobel has made a real effort to help us look after her; this has very greatly reduced the problems we face. Days such as today are easily borne, but yesterday was desperate. There is no predictability for Isobel's symptoms from day to day, and we know that inevitably there will be more days as bad as yesterday.

Isobel woke at about a quarter past eight and breakfasted, bathed, dressed and took her medicine without any problems. Balance was very poor although speech was fair. Iona came over and delivered her mother to the hospice.

I collected Isobel from the hospice; Steve commented that her balance had been especially bad today. I parked the car in the farther car park, knowing that if the forty yard walk was too much she could sit on a bench halfway and I would bring the car to her. We did not get to the bench, Isobel was unable to lift her right foot clear of the ground, when moving forward the right foot dragged heavily along the ground all the time. She could only manage ten yards, I sat her on the low retaining wall of the flower bed (if she toppled backwards there was a surface of wood bark chippings level with the top of the wall)while I brought the car up. The walking today is far worse than it has ever been previously. Isobel refuses to be taken into the hospice in her wheelchair, although a number of her group are always in wheelchairs.

The stairs have, perhaps surprisingly, never been much of a problem before. Today Isobel decided she needed to lie on her bed about an hour after getting home. I was a couple of steps behind her, About two thirds of the way up she knelt on the stairs and could not move. It took Euan and I about a quarter of an hour to get her to the top of the stairs. She was unable to do very much to assist herself, in fact her leg positioning hindered us considerably. There is no doubt that Isobel was not able to control her legs in any meaningful way. When Isobel was cleaned up and settled in bed I went to the shops and Euan kept an eye on her every couple of minutes. At one check Euan found his mother lying on the floor - he had been in the next room but had heard nothing. It appears that Isobel had tried to get out of bed for some reason but had slipped off the edge of the bed (similar efforts have been caught by one of us in the past). It appears that as she slid she caught herself on the corner of the bedside cabinet, as shortly afterwards a nasty scratch about a foot long was found on her back. Isobel was not able to explain what had happened or how she had got the scratch.

Iona arrived shortly after I go back from the shops. The three of us discussed the new problems that had arisen in the last couple of days. Isobel's weight is now up to fifteen stone and it is not practicable for Iona to move her. In fact she is at the limit for myself and Euan. Because she cannot or will not cooperate in placing her body and limbs in the most helpful positions, it often requires two people to move her. The methods that seemed only a week ago to be working satisfactorily will be unsustainable if Isobel remains unable to support her own weight for more than a very short time.

As Isobel enjoyed a substantial three course lunch at the hospice we decided to get by on junk food tonight, pizza and garlic bread. Isobel had two helpings of pizza and a whole baton of garlic bread, washed down by two half glasses of beer. Isobel dozed off at about 11pm.

A delayed posting of Mondays blog as a result of late night disruption. There have been several minor falls in the last few days, Isobel seems to be losing the uncanny knack she had developed of breaking her falls by falling against safe objects, so it is up to us to catch her now.

Isobel was a little better on Monday morning and bathed, dressed, breakfasted and took her medicine without any problems. Iona came over at 9am and took Isobel to the hospice. I collected her in the afternoon, she had not had a bad day. She will be at the hospice again tomorrow but not on Thursday as they are still having problems with the lift giving access to the lower ground floor where day centre activities are normally based.

Isobel had tagliatelli bolognese for dinner followed by rhubarb yogurt. A surprising aspect of the personality changes that have happened to Isobel is an increased interest in sport. Tonight she watched the athletics on television until 9pm, afterwards she spoke to her mother by 'phone (I have been trying to get her to do this for about a week). On the whole this was a good afternoon and evening for Isobel, but an hour or so later she was extremely uncooperative about getting ready for sleep and even with Euans help it was a long and trying task.

A difficult day today; Isobel has been very unhappy and uncooperative. She was very tired last night and slept through to half nine this morning. Once awake she was not willing to leave the bed and took breakfast upstairs. Afterwards she refused her tablets. For an hour afterwards she refused to move, go to the toilet or wash. Inevitably she was then found to have wet the bed (the incontinence pants now come with a helpful note of the surprising large amount they will absorb, but they just become overwhelmed).

Iona came over later and went out with Euan to do shopping. She went home in the late afternoon. Isobel was still refusing her tablets.

Isobel was very tired and spent the day either lying on the sofa downstairs or in bed. Richard and another of Euan's friends came over to finish planning their holiday in Germany next month, so our curry dinner was rather later than planned but none the worse for that. Isobel washed the curry down with two half glasses of red wine and seemed to enjoy it. Afterwards she took her medicine without any fuss. Her balance and walking was poor again today. Isobel's conversation was often incomprehensible, worse than for several days but still with brief periods of clarity. She spent much of the day denying that there was much wrong with her and insisting that she was able to make appropriate decisions about her care - understandable but not unfortunately correct. There are still worrying problems with attempts to clean things. This morning I left her on the toilet for about a minute while I put soiled bed linen in the washing machine and found that she had poured shampoo all over the floor. The most dangerous bottles are out of her reach but whatever she wants, she assumes the first bottle she grabs contains it. We are now at the stage where unless Isobel is asleep or settled watching television or a DVD she cannot be left for even a few seconds. This evening Isobel again said that she was too tired to speak to her mother on the telephone.

Isobel had a disturbed night as various problems arose at 2am; 4am and 6am; both Euan and I spent time calming her down. The night ended with a slightly wet bed which was quickly cleaned up; but later this was repeated on a larger scale. Isobel was tired after yesterday's trip and slept for part of the morning.

Iona came over before lunch and stayed for most of the afternoon. Isobel's balance was just a little better than yesterday but her speech was poor all day.

Isobel had Chicken Kiev, boiled potatoes and beans for dinner, followed by apple crumble. She went to bed about 9pm and dozed on and off for a couple of hours.

A late post for Friday's blog as we did not get home until after midnight. Isobel made a slow and relaxed start to the morning but brightened up by lunchtime.

After lunch we had planned a quick trip up to Milton Keynes to collect Isobel's handbag which had been left behind on our earlier visit. Departure was delayed when we learned that the Dartford crossing was solid as a result of a failure of the toll booths. We finally left just before 4pm without Iona, who predicted many hours would be spent in traffic jams. However we were very lucky, avoiding most to the ten mile tailback and keeping moving all the time. We arrived at Milton Keynes just before 6pm. We stayed rather longer than planned. Isobel had fish and chips for dinner, followed by banoffee and various cakes. The journey home was uneventful and Isobel went straight to bed. Isobel does not have any problems with these fairly long car journeys, very odd. Her balance and walking today was none too good, her speech was variable.

Today has been a wet day. A wet bed at 7.45am was followed later in the morning by a wet sofa downstairs, and in the afternoon by a wet living room chair. I suspect this is a result of Isobel being very tired after yesterday, coupled with a different type of incontinence pants.

Isobel relaxed and did very little today. Her speech was, at first, rather better than yesterday. Her walking and balance was about the same, despite her tiredness.

Isobel had shepherds pie with beans, peas, carrots and cauliflower for dinner, followed by a second helping of chocolate pudding - the first helping had been for lunch. She went to bed at about 10pm and fell asleep quickly.

Isobel rose early and had breakfasted by 8.15. Later she had a bath and our friend June called in just after ten and stayed for an hour and a bit. June brought homemade bakestones (Welshcakes) with her and between the three of us we ate them all before she left.

Afterwards we drove to Milton Keynes to see Dallas. It was dull and overcast in Milton Keynes so we did not go out to Dunstable Downs as planned but stayed in Dallas' house chatting. Mike and Alice (Mike's mother) were there and later on Clive came home from work, he is busy building the worlds longest guided bus route in Cambridge. Isobel had cold salad for lunch and cream buns for tea. Dallas cut Isobel's hair. We left before eight and were sent on a long and amusing diversion round many of Milton Keynes' roundabouts on the way home as the road to the M1 was closed.

When we got home Isobel had pizza for dinner and stayed up until midnight. Today her speech has followed the usual pattern of being better in the morning than in the eveing. Her walking and balance were about the same as yesterday.

After a difficult night, today was much like yesterday. Isobel was fairly active and breakfast, bathing and dressing caused no unusual problems. Iona came over at 9am and dropped her mother off at the hospice. For the first time ever I used the whole of the respite break to catch up on sleep, but afterwards felt more tired than usual.

When I collected Isobel from the hospice she again had a walk to the more distant car park. This time it was much more difficult than yesterday and by the time we got to the car Isobel was barely able to walk at all and I was supporting about half of her weight. Isobel had declined to use both the wheelchair and a rest on a bench half way along the walk. When we got home most of the signs of exhaustion had gone, but Isobel's balance and walking remained poor for the rest of the day. As a result of a major lift breakdown which makes the lower ground floor unavailable, Isobel will not go to the hospice on Thursday. She has a packed programme for tomorrow so may well be very tired anyway on Thursday morning.

Isobel had steak pie, baked potato and onion rings for dinner, followed by rhubarb crumble. She went up to bed at about half eight and watched television and dozed until about 11pm.

A much better day today. Isobel got herself up at 8am and was alert and as active as she can be. Iona came over at 9am and we delivered her to the hospice at 10am. Her balance and walking were still poor but she was not at all tired and was prepared to attempt to help herself. Her speech was fairly good in the morning.

I collected her from the hospice at 3pm; she had a good day there (and I managed to finally clear the backlog of washing). The car was in the further car park and the walk of fifty yards was difficult for Isobel, but she managed it better than on several earlier occasions. Isobel had chicken in basil sauce for dinner, followed by rhubarb crumble. Isobel was still not tired and spoke to both her brother and her mother by telephone. Although she went to bed at just before 8pm she was bright and awake for several hours afterwards, watching television, drinking coffee and eating her dessert.

Isobel has been very tired throughout today. She breakfasted and sat up for a couple of hours with Euan this morning, but afterwards spent most of the day in bed, which is very unusual.

She came downstairs for a curry dinner, but was not comfortable sitting at the table, and very unusually did not finish her meal. She asked for a glass of wine but did not touch it. Isobel was clearly having difficulties loading food onto her fork. She attributed this to eyesight problems, stressing she was not seeing double, but rather that her vision was blurred. There have been no eyesight difficulties affecting her moving around the house and this seems to be a short range vision problem.

Isobel was asleep by 10pm.

Another leisurely start to the morning. It is difficult to describe the variation in Isobel's symptoms from day to day unless the change is dramatic. More often they vary as much within the day as from day to day. They are often better in the morning and worse in the afternoon and evening. However Isobel's walking and ability to get up from bed or from chairs was as bad at times today as it has ever been.

Iona came over and took Euan off to do the shopping. After a late lunch we went by wheelchair to Keith's, leaving Iona to transport her brother to Gravesend. At Keith's we had the usual afternoon of beer and rugby. Liz provided a mountain of food, which Isobel but not I did justice to. We came back at about 6pm; I managed to convince Isobel to return by wheelchair for a change.

Isobel was tired by the time we got home and retired to bed, watching the football (West Brom vs Newcastle). As we had eaten so much earlier in the day, we did not have dinner until almost eight o'clock. Isobel had corned beef and beans, followed by apple and blackcurrant pie. She fell asleep at about 10pm.

An interesting night as Isobel refused to go to bed until 4.30am, although she was dozing for a lot of the time that she lay on the sofa. As a result we made a slow start to the day and were not dressed when the district nurse called unexpectedly at 9am. She seems happy with the slight stability we have now, at least the medication is being taken regularly and not every day is a series of emergencies.

Iona came over before lunch and went home at about 4pm. John Greenhalf, the ed psych, visited in the afternoon for an hour and a half. He has been reallocated away from Hook Lane School so he will not be able to regale Isobel with tales of her old school.

I spoke to Elaine, Dr Sadler's oncology nurse by 'phone. We discussed the meeting with Professor Hawkes and I explained the background to the two phenytoin assays - the first one probably showing a low level because Isobel had stopped taking phenytoin a couple of days earlier, the second one (the results of which had not been available to Professor Hawkes) was taken when she had been taking her medication normally for several weeks. Elaine, who sees many glioblastoma patients each week, was not completely surprised by Isobel's performance and said that this sort of thing tends to happen. We discussed Professor Hawkes suggestion for trying to reduce the steroid dose. Although previous attempts to do this had resulted in a rapid decline in Isobel's balance, perhaps the situation has changed. It was certainly the case that when Isobel stopped taking all medication for four days, there was not any disastrous reaction to the loss of steroids. In the past, drops in steroid dose have produced a marked change in Isobel's balance after two days. However, her balance at the moment is well below the levels produced by cutting steroid dose in the past. It is not clear what would be the best course, Elaine will discuss it with Dr Sadler.

Isobel had chicken arabiatta for dinner, followed by apple crumble. Afterwards she dozed in bed. Isobel's speech, walking and balance have been about the same as yesterday.

Thursday started with a wet bed at 1am which was quickly dealt with and sleep resumed. Isobel rose at 8am and was not too tired, she breakfasted, bathed and dressed without problems and went to the hospice at 10am. This morning her language hardly showed the improvement noticed on other mornings. Isobel's balance and walking was about the same as yesterday.

I took a tray of aspidistras into the hospice when I collected Isobel at 3pm; she had a quiet day there. Isobel had beefburgers for dinner followed by apple crumble and croissants. She was very tired in the evening and dozed for much of the time; her language was worse than in the morning. She was so tired that she did not feel up to speaking to her mother when she 'phoned.

Isobel continued watching television until 12.45am, then went to bed. She got up at 6.20am and wanted to go downstairs to watch television but I persuaded her to watch in bed - that way I could get more sleep. Isobel fell asleep again until about 8am, then breakfasted and bathed. Iona came over just before 10am bringing a large pile of wet washing for drying.

Sue Lock came round at half ten and stayed for about an hour and a half. Isobel's speech was not so good this morning. We discussed strategies for keeping Isobel entertained, including jigsaw puzzles and restarting the rug making. It seems we are all going to build a giant Lego structure on the kitchen table! Isobel accepted that she was no longer up to knitting and Sudoku. (I was relieved about the knitting as it has been very unpleasant to watch her failing to do this and not being able to give much help. Knitting is now well beyond her capabilities. At least with the rug making I can help, although before she stopped doing it a couple of months ago she was finding it very mentally tiring.) Sue re-assured Iona about some work issues arising from the time off she has had to help look after her mother. Sue thinks that the recent changes in Isobel's speech, sleep patterns and other symptoms are likely to continue erratically and unpredictably in future. We will see Sue for the last time on the 2nd of September, her penultimate day in the job.

We had planned a trip to the shops in the wheelchair for the afternoon to buy some new skirts for Isobel, but after lunch she was too tired to go. We lounged around for the afternoon doing very little except talking, Isobel dozed a little. Iona went home about 4pm. Our friend Dallas 'phoned as she was in the area but Isobel said she was too tired to see her, this is very unusual (however we have arranged to go and see dallas in Milton Keynes next Wednesday).

Isobel had penne bolognese again for dinner. She went to bed at 8pm and dozed or watched television for about an hour before finally falling asleep. Isobel's balance and walking were about the same as yesterday.

A fairly straightforward day, apart from me sitting up to 3.30am coaxing the freezer back to life and loading up the conserved contents in order of perishabilty. Isobel was less tired than yesterday and got moving without too many problems in the morning. Iona came over at 9am and washed her mothers hair and dressed her. Hair washing used to be my responsibility, but Iona does it usually now as she does a better job in half the time. Iona and Euan took Isobel to the hospice and went shopping afterwards. I spent most of the morning on the 'phone and then grabbed a couple of hours sleep lunchtime. One of the 'phone calls was from Sue lock, the Ellenor Trust psychological nurse who has helped for us for over a year now, she is retiring soon. While the care support we have had has been generally very good, there is little continuity of personal contact as people change jobs and responsibilities frequently.

I collected Isobel from the hospice at 3pm; she had a quiet day, and the usual good lunch. Her walking and balance today have been better than yesterday, although still poor compared to a month ago. Her speech was variable, no more than a couple of consecutive sentences being accurate and many conversations incomplete when Isobel gave up on the effort of trying to convey her meaning. Isobel had woken before me this morning and attempted to use the washing machine. No detergent was used but the fabric conditioner tray was filled with washing up liquid and something else that blocked the outlet. The general opinion of the medical profession seems to be that there is mild dementia and we should expect it to continue.

Isobel had penne bolognese for dinner followed by two helpings of strawberry cheesecake. She wemt up to bed early and fell asleep.

Postscript: Isobel woke up just before midnight and asked for food. She had a third helping of cheesecake, some biscuits and a cup of coffee. She settled down in the living room to watch television for a while...

Isobel was very tired this morning, and said that she could not go to the hospice day centre, she just wanted to go back to bed and sleep. She was indeed very tired but only slept for a short while after breakfast. She bathed and then sat in bed watching television. I had shown her how some new style pants could be opened at the side, unfortunately she experimented with this and had to move downstairs while the bed was stripped. Isobel's walking was as bad as it has ever been today.

High point of the afternoon was defrosting of the freezer - the vast consumption of vegetables recently has been part of the planning for this. Iona came over at the end of the afternoon and we all had a curry. Isobel washed hers down with two half glasses of red wine - very cheap Hungarian Cabernet Sauvignon from ASDA but a perfect curry wine.

By the evening Isobel's speech was very vague, although it had been better in the morning, continuing the recent trend. Iona stayed until ten, then Isobel began watching television in bed but fell asleep almost at once.

A bad night continued with the discovery just before 3am that Isobel had removed her incontinence pants and as a result wet the spare bed, which does not have a thick mattress protector or waterproof layer. She sat on a chair while our bed was hastily made usable again, luckily the earlier cleanup had dried much more quickly than expected as it was a very warm night. A slow start was made to the morning.

Iona came over at lunchtime and stayed for a couple of hours. She took Isobel back to her house for a couple of hours and then I brought her back. A lot of jobs scheduled for today did not get done as everyone was shattered.

For dinner Isobel had ham and pineapple pizza with cheesy potatoes, green beans and carrots. Isobel's walking and balance were again very poor although once again her speech was better, especially in the morning.

Isobel made a leisurely start to the day as we did not have anything organised for the morning. Once again her balance and walking were poor but her speech was better. This is a pattern that has been seen a lot in the past couple of weeks, although there is no obvious reason why one symptom should improve and another become worse. The speech is certainly better in the mornings and deteriorates later on.

After lunch I took Isobel in the wheelchair to my brothers house. As usual we watched rugby, ate cake and drank beer and tea, although this week Isobel decided not to have any beer. Isobel seemed to enjoy herself. Keith commented that her speech was a lot more understandable. We came back at about half six, Liz driving Isobel over while I wheeled the chair.

Isobel had ravioli, aubergine, courgettes, peppers, onions, green beans and carrots for dinner. She did not want anything to eat afterwards - not surprising as the main course was very large.. She went up to watch television in the bedroom at about a quarter to ten; by ten past ten she had soaked the side of the bed. This defeated the layers of waterproofing, mattress protector and old nappies which cover the surface of the bed. It was disappointing as I had checked whether she needed her pants changed when she went up, and Euan had asked again when he saw she had moved to an unusual position on the side of the bed. The bed will be out of use until tomorrow night as drastic cleaning was required. While I was doing this, Euan was with Isobel in the bathroom, he intervened when she tried to drink "Fabreeze" claiming it was mouthwash, as he was putting the bottle back Isobel tried to swallow a bleach based bath cleaner but Euan stopped her. The bottles etc in the bathroom had previously been reorganised in order to minimise the risk of accidental confusion, but now I have removed everything except soap, shampoo, bubble bath and harmless items. Isobel was settled into the spare room for the night. Isobel's speech was very difficult to understand tonight.