I went in to see Isobel at a quarter past five, rather later than planned as a result of getting bogged down in plastering. Isobel was asleep when I arrived, but woke fairly quickly. Today she had missed breakfast but eaten her lunch. I massaged and manipulated her right arm. I had just begun reading to her from her book when tea arrived.

Isobel ate the first course of sausage and mash without any difficulty. Although liquidised sausage and mash does not sound very nice, it is still appetising on the plate. For afters she had a bowl of yogurt, with a beaker of thickened tea, alternating between the two as she became tired from swallowing. By the time she had finished both it was after 6pm. As soon as I had cleaned up after the meal, Isobel was asleep.

A few minutes later Dallas and Mike arrived, they had spent an interesting afternoon at the "100 objects" exhibition at the British Museum. Isobel was already very soundly asleep when they arrived and we decided not to try and wake her. She remained more or less asleep throughout their visit; they left at about a quarter past seven.

Isobel slept on for twenty minutes after Mike and Dallas had left. When she showed signs of not being so deeply asleep I woke her. She drank a beaker of thickened blackcurrant squash fairly quickly. I then read to her from her book for about twenty minutes. I talked to Isobel about the plot and she was able to give a few unclear one word responses only. Just before half past eight Isobel fell asleep again. I went home at twenty to nine.

I went in to see Isobel at half eleven this morning. She had eaten all her breakfast. She was asleep when I arrived but woke up with very little prompting. She drank a beaker of thickened blackcurrant squash without any problem. I massaged and manipulated her right arm which continues to be better than a couple of weeks ago although Isobel remains unable to move it herself at all. Isobel was not able to speak at all apart from saying "yes" and "no" very indistinctly. She confirmed she was comfortable and not in pain.

Lunch arrived at mid-day. Isobel easily ate all the first course of meat, peas and mashed potato. She took a short rest after, while I read her two pages from her book, then she ate a bow of custard. I read a few more pages, then Isobel drank a beaker of thickened orange juice. I then read to Isobel for almost another twenty minutes. She was awake with only a little sign of tiredness; I turned the television on so that she could watch it this afternoon but within a few minutes she was dozing. I went home at a quarter past one.

I went in to see Isobel just before 5pm. She was asleep when I arrived. She had eaten her breakfast but had missed her lunch as she was asleep. She had not drunk much during the day. A disaster had befallen the hyacinths brought in by Pat and Dennis ball, two of the three heads had been detached when the pot fell off the window sill although their scent still filled the room.

Isobel woke fairly easily and I gave her a beaker of thickened blackcurrant squash to drink, she managed this without any problem but was clearly very tired. She said nothing except for a couple of poorly enunciated "yes" and "no" responses. I held the hyacinth flowers for her to smell their strong scent but their was no response, I do not know if she was able to detect the scent. We watched television but Isobel's eyes were not directed at the screen for much of the time. She dozed off a couple of times.

Tea arrived very late at about a quarter to six. Isobel ate the meat, mashed potato and veg with no problems, it was a fairly large helping. She began to drink a beaker of tea, but needed several short rests before she could finish it. I manipulated and massaged Isobel's right arm, it was not very swollen and was fairly flexible. I tried to carry on a conversation but Isobel was unable to say anything other than one word answers and these were very weakly spoken. She was not in any pain and was comfortable. I left at a quarter to seven, Isobel was drifting off to sleep again.

I went in to see Isobel at 2pm. She was asleep when I arrived. She had eaten all her breakfast, mid-morning pot of balanced supplement and lunch. She had also been drinking well today. After a short while I woke Isobel without any difficulty and she drank a beaker of tea with no difficulty. I massaged her right arm and manipulated it, I think this may have becme a bit easier since the steroid dose was increased. After the carers changed her pads, she went back to sleep and I let her sleep on.

Dr Mohan arrived at 3pm. We discussed the effect of the two increases in steroid dose. He believed that there was not likely to be any further significant improvement in Isobel's condition as a result of the steroids. There is no scope to increase the dose further. There is no other drug option available. Myself and the nurses agreed that there had been a significant improvement in Isobel's swallowing. I expressed disappointment that her speech had not improved significantly, although it was just a little better than the almost total loss that had suddenly occurred. The doctor confirmed he did not anticipate any recovery of the power of speech. He thought the stomach tube was essential to maintain nutrition in the future and confirmed that he had requested that arrangements be made for this after the previous discussion but had still heard nothing (it is of course graded as a non-urgent surgical procedure). We agreed that nutrition was not a problem at the moment but this could change at any time. The matter of the throat collar to support Isobel's head during feeding remains outstanding. We all agreed she is comfortable and not in pain at the present; there is nothing else we can do to improve her condition. The matter of a "Do not resuscitate" note on Isobel's file was, for the third time, postponed to a later time. The doctor was of the opinion that the future course for Isobel was not possible to predict with any confidence; in particular he could not guess at the timescale. Something could happen at any time, the growth of the tumour in the brain was unpredictable, it was not possible to know what damage might occur in the near future, the option of increasing steroids to reduce fluid pressure in the brain cavity was no longer available - on the other hand there might only be gradual change for a while.

After the doctor had left, I woke Isobel up. I did not feel like discussing much of what had been said with Isobel and did not feel doing so would help her. I merely mention the points about speech and the stomach tube. Isobel wanted some of her book read to her and I did this for about half an hour until she fell asleep again. Although Isobel was tired today, she was in a contented mood. She only spoke a few single words, no phrases or sentences. I went home at ten past four.

Rosemary went in to see Isobel at mid-day. Rosemary has not been in to see Isobel since Christmas so I briefed her by telephone, so that the deterioration in Isobel's condition did not come as a shock to her. Rosemary has a lot of caring experience, and got stuck into the task of feeding Isobel her lunch. Isobel ate only part of the first course but all her yogurt after. Rosemary left at ten past one.

Pat and Den Ball (Chris's parents) went in during the late afternoon. They had also been briefed about what to expect. They found Isobel fast asleep and she did not wake at all during their visit. I bumped into them in the car park when I arrived at five o'clock.

When I arrived, Isobel was asleep. She had eaten all her breakfast but had slept for most of the day. Her right arm was not too swollen and I gave it only a brief massage. Isobel woke as tea was delivered. She ate the whole of a very large first course fairly steadily. Then she drank a beaker of thickened tea, but slowed up dramatically and needed a number of long pauses before she finished it. She was finding swallowing more difficult that in the past few days and was showing signs of tiredness. I did not offer her one of the pots of balanced sweet.

I have arranged to see the doctor at 2pm tomorrow,

We watched television until half six, then I chatted to her. Isobel's speech was again very limited, usually just one word answers or comments, occasionally three or four word phrases. Isobel drifted off to sleep at about seven o'clock. I woke her up at half past seven and helped her drink a beaker of thickened blackcurrant squash. She finished this very briskly, with no problems. It seems as if the tiredness that effects swallowing can sometimes be overcome by a short period of rest.

Isobel confirmed that she would like some of her book read to her. I did this until she fell asleep at five past eight. When I was sure that she was fast asleep, I came home at 8.10pm.

I spent most of the day plastering and cutting wood in the living room and was very late going in to see Isobel. It was after half seven when I arrived at the Centre. Isobel was asleep and I spent the first quarter of an hour marking up some more clothes Iona had sorted out for Isobel. Isobel was reported as having had a good day although she was asleep for much of the time. She had eaten all her meals without any problems.

I woke Isobel and massaged her right arm. She drank a beaker of thickened tea without any difficulty. Her speech was very limited, mainly single words said unclearly, just a few three or four word phrases. I had hoped the two increases in steroid dose would have helped her speech, they certainly seem to have helped her swallowing. It is possible her speech might have been better earlier in the day, but I am not sure - the nurses and carers say they get very little speech from her.

I did some re-organising in the room and removed the yellow glass bubble lamp which has ceased functioning. Isobel confirmed she would like some of her book read to her, so I did this for twenty minutes until she fell asleep. I prepared to leave, but Isobel woke up, she was clearly tired but her speech was a little better than it had been before. We talked for a few minutes, until Isobel asked for the light to be turned off. I settled her down for the night and went home at a quarter to nine.

I went in to see Isobel just before 11am. She had eaten breakfast and drunk well earlier in the day. She was very soundly asleep. I manipulated and massaged her right arm but she did not wake.

Sometime after eleven Dawn from the Ellenor arrived. We did not need to wake Isobel immediately. We discussed the changes since the steroid dose was increased last week and the lack of any significant change over the weekend. There is no doubt that the feeding is easier and the increase in the Omazaprole dose is preventing any more vomiting as a result of stomach irritation from the steroids. The anticipated improvement in speech has not taken place, it is just a little bit better than at its worst. Inability to speak or communicate her wishes easily by any other means is reducing Isobel's quality of life. She is still very sleepy for most of the day although this seems peaceful enough. The tubs of balanced dessert are going down well.

We agreed to increase the steroid dose again to 16mg daily. The Centre would store an emergency supply of injectable phenytoin substitute in case it becomes impossible to administer oral phenytoin (this drug is essential to reduce the risk of seizures). All medication is already in liquid form as Isobel's ability to take tablets became unreliable a couple of weeks ago. The present feeding regime would continue.

After Dawn had left, lunch arrived. I woke Isobel easily. She ate the first course (meat, carrots, brussel sprouts - all liquidised; and mashed potato) briskly and without difficulty. For afters she had real rice pudding (i.e. not liquidised!) which she ate a large bowl of without any problems or sign of becoming tired of swallowing. She drank a beaker of thickened blackcurrant squash and finished a tub of balanced dessert which had been started earlier in the morning. This confirmed that the improved eating performance was continuing.

We watched the news on television and talked about it, Isobel was hardly speaking at all, just the odd "yes" and "no". I sorted out some of Isobel's clothes, watered the plants and helped administer some of her medication. After, I read some of her book to her until she fell asleep. I sat with her for a while but it was clear that she was fast asleep. I left at just after half past two. On the way home I bought some more plaster as I have finished a large sack in the living room; and then went to inspect the road at the bottom of Midhurst Hill. Last night I inspected an incipient collapse of the roadway and reported it to Thames Water this morning, it had collapsed further during the day and was now about half a metre deep and coned off.

I went in to see Isobel at a quarter to five. She had eaten all of her breakfast and lunch and had not been sick. She was lightly asleep when I arrived and woke quickly. We talked for a few minutes but Isobel did not say a great deal, mainly single words and a few short sentences. Her words were often unclear. The right arm was not very swollen. I read to her from her book for about half an hour until tea arrived rather later than usual.

Isobel ate all the first course of meat, mashed potato and baked beans briskly and without difficulty. After a short break, she drank half a beaker of thickened tea before Dallas and Mike dropped in on their way home from Ramsgate after a week working of the bathroom of the flat Dallas lets out. While we chatted, Isobel finished the tea. She did not say very much while Dallas and Mike were there, and the words were still usually unclear. Mike and Dallas left for Milton Keynes at ten to seven. After Mike and Dallas had gone, Isobel ate one of the pots of balanced food supplement for dessert. It was the first time I had opened one of these and it seemed very palatable.

I read to Isobel from her book for another half hour, she was not very responsive although she was wide awake all the time. Towards the end of this period her speech became clearer, the words said much more distinctly. I had brought in some more skirts for her and marked these up for the Centre laundry. At about a quarter to eight Isobel drank another beaker of thickened tea without any difficulty. I manipulated and massaged her right arm for a few minutes, it is not in too bad a condition and the roll she has been given to clasp is helping to stop the fingers clenching tightly. I put the television on and turned the main light off, we watched some coverage of the Olympics. Isobel was still awake although showing signs of tiredness when I went home at a quarter past eight.

There is no doubt that Isobel is somewhat improved over the past week, but from a very low point. I think we will take the decision tomorrow to increase the steroid dose from 12mg daily to 16mg.

I went in to see Isobel just after half past four, She was sound asleep when I arrived. She has not been sick since my previous visit. The nurses reported that although she had completely eaten both breakfast and lunch, she had not been completely awake for much of the day.

As she was so soundly asleep and had eaten well I did not make a determined attempt to wake her. I manipulated and massaged her right arm. I cut the fingernails on her left hand. I cut the fingernails on the thumb, first and third fingers of her right hand; the other fingers were curled so tightly that it would have caused pain to uncurl them. I went home at about a quarter past five.

I went in to see Isobel just before mid-day. She was asleep but woke up fairly quickly. Her speech was no better than yesterday, a lot worse than Wednesday. Isobel was sick during the night and again this morning. The nurses did not think the vomiting had resulted in the loss of a significant amount of dexamethasone steroid. Isobel's right arm was slightly more swollen, despite being well elevated on a pillow and a teddy bear.

Isobel's lunch arrived just after twelve. I fed her the first course, which was large, in about ten to fifteen minutes. She ate briskly with no problems swallowing and no coughing. We started on a beaker of thickened tea and had got about half way through it when Dawn from Ellenor arrived with the dietitian.

We had a long and detailed discussion. Isobel was only able to give a few yes/no answers to their questions so I gave an account of the past few days. It was agreed that Isobel was not at any significant risk of malnutrition at the moment, although we agreed a range of fruit flavoured balanced dessert mixtures will be supplied in place of other desserts, but Isobel can still have the occasional yogurt for dessert. This will make it less important to ensure Isobel eats all or most of her first course, as on bad days this takes a very long time and leaves her exhausted. I stressed how at the moment Isobel is spending almost all her waking hours some days being fed or having brief rests during the feeding process. Although we have not had serious disasters on the feeding front it was not a comfortable situation. I confirmed that Isobel had indicated that she was happy with the idea of the stomach tube being inserted, although while we were talking she had drifted off to sleep and could not comment herself. I thought that a nasal tube was likely to be less well tolerated. Dawn said that Isobel would be reviewed by the hospital on admission and it was possible, although unlikely, that they might conclude the procedure should not be performed. I accepted that this was a matter for the surgeon's professional judgement. The dietitian indicated that she considered the stomach tube appropriate.

We agreed that the future course of Isobel's illness was to some extent unpredictable as we did not know how the tumour growth was progressing or what parts of the brain were being destroyed. Regarding the effect of the steroid dose increase, I described the changes over the past few days. Dawn wondered whether an immediate increase from 12mg daily to 16mg daily should be made. We eventually agreed to allow a couple more days to see whether there would be a significant response to the last increase - although the steroids in January 2008 took effect in three days the full effect was not apparent for a week. Dawn will come in at 11am on Monday in order to further review the situation and the dose will be increased to 16mg daily unless there has been a significant improvement over the weekend. Regarding the vomiting, this may be due to stomach irritation from the steroids and a change in dosage of omazaprole (which protects the stomach lining from the steroids) may be required.

After Dawn and the dietitian had left, I let Isobel sleep on for a while. She did not finish the tea which had gone cold and is not a very appealing prospect when thickened in any case. I woke her at about 2pm and gave her a beaker of thickened blackcurrant squash which she drank steadily. Afterwards we sat and talked, although Isobel said only individual, rather unclear, words. I put the television on and we talked about the Olympic curling. Isobel fell asleep and I left at about a quarter to four.

Keith and Liz went in to see Isobel this afternoon, but she was fast asleep and theyt were not able to rouse her by reasonable means.

I went in to the Centre at 5pm. Isobel was already awake, but was not as alert as yesterday. Her speech was limited, some three and four word phrases but not as many as yesterday nor as clearly articulated. After we had talked for quarter of an hour tea arrived.

I fed Isobel her first course of scrambled egg and tomatoes; she ate very quickly and this took between five and ten minutes. She drank a beaker of tea quickly. By the time she came to eat her yogurt for dessert she was showing some signs of tiredness when swallowing but, with several long breaks, still finished it without any difficulty. Purely in terms of the ease of feeding her, this was the best meal for several weeks.

Isobel watched television and I talked to her about the programme until half past six. Then I went through the local paper giving her summaries of the interesting news articles - there were not many! She drank a beaker of thickened blackcurrant squash very easily: the consistency is thick enough for it to be spooned into her mouth and the blackcurrant squash produces a more palatable substance than other drinks. Isobel was awake but sleepy when I left at a quarter past seven.

This morning Jane and Derek had visited Isobel but found her sound asleep. Isobel had been awake earlier but missed lunch as she could not be woken.

When I arrived at the Centre at 5pm I found a note from Miranda who had called this afternoon and also found Isobel asleep. However at 5pm Isobel was awake and very alert. She had limited speech, including three of four word phrases, this may be attributable to the effect of the tripled steroid dose beginning to show. She was certainly brighter than she had been for the past two weeks. We chatted while I watered the cyclamen Jane had brought and arranged the flowers that (presumably) Miranda had left. This was really the first good two way conversation we had been able to have for some time. I massaged her right arm which showed slightly more sign of swelling that for the past few days. Isobel confirmed that she did not have any pain.

Tea arrived and the main course, the cheesy eggy mashed potato concoction which tastes and smells very good even though liquidised, with tomatoes, was eaten very quickly. The dessert of strawberry mousse was eaten more slowly as Isobel's throat and neck muscles began to tire. The food was accompanied by a beaker of tea, and shortly afterwards a beaker of thickened blackcurrant squash.

After Isobel had finished tea we watched television and talked. Isobel watched some of the Winter Olympics in a rather desultory fashion and we talked about the sports. She drank three quarters of another beaker of tea, the only reason that she did not finish this was because she had a beaker of water with her evening medication. After 8pm Isobel began to appear tired and watched the sport with less concentration. She was still just awake when I left at 8.25pm; but probably fell asleep soon after.

A rather brief report today.

I went in to see Isobel at a quarter to twelve. She had been alert earlier and had finished her breakfast but was soundly asleep when I arrived. I was unable to wake her at all despite trying to do so for fifteen minutes. Then Claire, the speech and language therapist arrived to check on Isobel's swallowing, and at the same time Isobel's lunch arrived. I obtained the help of a nurse to attempt to wake Isobel but without success. I had not seen her asleep like this before but the nurse confirmed it sometimes happens. We agreed it would not be possible to wake her at this time, a meal will be offered later.

Claire confirmed the neck collar, designed to help position Isobel's neck in the best position for swallowing would appear shortly. She was happy with the progress towards the stomach tube although rather doubtful that it would be achieved in the timescale suggested last week. I gave her a long description of feeding problems and successes over the past week, which she seemed to find encouraging. She will check with the nurses later in the week to see how things were going.

I sat with Isobel for a few minutes after Claire had gone, but she remained soundly asleep so I left at twenty to one.

Today was a busy day for Isobel. I went into the Centre at a quarter to twelve, June had said she was going in at about that time as well. Isobel was asleep but woke up fairly quickly. She confirmed she was comfortable and not in any pain. I massaged her right arm but the swelling was not too bad, the fingers are locked and I did not to to free them. Her speech was again largely restricted to single words. I read a little of her book to her before lunch arrived. June also arrived, having been held up at a tutorial session.

Isobel ate the main course of her lunch fairly quickly and easily. June thickened her tea to an appropriate thickness and Isobel began to take the tea as well as her desert, yogurt. The Ellenor nurse, Bev, popped in to see how things were going and we discussed the rapid decline in Isobel's condition. After Bev had left we continued with lunch, but a strange phenomena occurred, the tea became thin again, reverting from custard thickness to somewhere between syrup consistency and that of unthickened tea. This was very odd as the only variable that was changing was the temperature of the tea, and this might have been expected to increase the viscosity ot the tea, not decrease it. Isobel ate all of her yogurt but we left the last third of the tea. For additional fluid intake, Isobel had 200ml of water mixed with her paracetemol.

When Bev returned with Dawn Dark, the Ellenor specialist, June left. We had an in depth conversation, Isobel, I, Bev, Dawn and Rose - Isobel's nurse. It was agreed that Isobel's dexamethasone (steroid) level should be jumped up from 4mg a day to 12mg a day, specifically to try and give her a period of better quality life. The steroids should roll back some of the symptoms in the way that they did when she was on 12mg a day at Kings College Hospital at the start of January 2008. Dawn thought that this might give Isobel a better power of speech which would make life better for her as she will be able to make her wishes known without relying on our attempts at interpretation. Dawn will liaise with Dr Sahota later today and the increased dose should be implemented tomorrow. Dark will come back lunchtime on Friday to check on the effect of the increased dose. (When Isobel was at Kings College it took about three days for the steroids to have a marked effect.)

After Bev and Dawn left, I read some more to Isobel from her book, but there was a constant stream of callers, delivering washed clothes, checking for missing nightdresses and delivering post. Then Luisa from school arrived and stayed for about half an hour.

I settled down to read some more to Isobel, but she was tired and soon fell asleep. I sat with her for a while and then went home at just after 4pm.

I arrived at the Centre just before noon and was surprised to find that Isobel had already finished eating her lunch, she had cleared the plate completely. I noticed that Dallas and Mike had dropped in for an hour and a half yesterday afternoon, but have not been able to speak to them as they are in Ramsgate.

The nurse who had fed Isobel her lunch said that she had not eaten breakfast but had a yogurt part way through the morning. She said that Isobel (or more precisely her throat muscles) was now too tired to swallow a drink, we agreed I would offer her one later in my visit when her muscle strength had recovered. Isobel was fairly alert and able to respond to questions with one word answers. I updated her on family events and we discussed yesterday's rugby matches. I then read to Isobel for more than half an hour from her book. She was starting to fall asleep, and appeared to be fully asleep within a couple of minutes of me stopping reading. We have now read more than three quarters of the book, "I capture the castle" by Dodie Smith who also wrote "One hundred and one Dalmations"; well over three hundred pages.

I let Isobel sleep for more than half an hour until twenty five past one. I then woke her, which only took a few minutes. I made up a beaker of thickened blackcurrant squash which she drank fairly quickly, in about ten minutes with a couple a long rests during this time. We chatted for a while, her comments still restricted to single words, and went home at a few minutes before two o'clock.

Donna and Denis went in to see Isobel later in the afternoon. They found her alert and giving clear answers and comments in conversation (as far as I can judge, better than when I visited). They gave her some further drink.

I went in to see Isobel at noon. She was very soundly asleep and was still in the process of waking when lunch arrived ten minutes later. I checked her right arm and massaged and flexed it without attempting the straighten the fingers.

The carer reported that Isobel had been wide awake for breakfast and had eaten all of it with no problem at, she she also been drinking well.

The first course of lunch, liquidised meat, two veg and mashed potato was completely eaten, although it was a slow process. There were about half a dozen periods when Isobel would eat four or five spoonfuls of food quickly and efficiently, with intervening periods of very slow eating with long rests between mouthfuls. For desert Isobel ate half of a very large helping of bananas and cream, this was consumed fairly quickly but she became tired, in the sense that the muscles of the mouth and throat were not functioning as well. She drank a beaker of thickened orange squash very easily during the meal.

By the end of the meal, despite the fatigue with swallowing, Isobel was more alert. I chatted to her for a while and she was able to give one word responses, usually just "yes" and "no" but sometimes other words. She confirmed that she was not in pain and was comfortable. We agreed to postpone book reading until tomorrow and I left a little while after half one.

On the way out I spoke to the nurse who said that she was pleased with Isobel's condition today, they had been concerned by the difficulty getting fluid into her the previous two days. While we wait for the stomach tube to be inserted, if fluid intake becomes a crisis problem it may be necessary to use a nasal tube for hydration. On the whole Isobel was far more responsive during this visit than for several days.

Iona took Euan in to see Isobel at mid-day. Isobel was asleep and the children had great difficulty in rousing Isobel sufficiently to tackle her lunch. Isobel had refused to eat breakfast and the children had a struggle to get lunch down her. Eventually she ate almost half the meal. The main cause of difficulty was Isobel clenching her teeth together and refusing to open them. They managed to get her to finish a drink by putting it between lips and clenched teeth, eventually she would swallow it.

Isobel did not speak a single word during the visit. After the meal she was exhausted and fell into a deep sleep. Iona and Euan left at about a quarter to two. I had intended to go in to see Isobel later but as I was very tired I let Iona convince me this would be pointless as Isobel would be asleep. I will go in tomorrow morning. The rapidity of the deterioration of Isobel's condition is astonishing.

I went in to see Isobel at half past twelve, she had already finished lunch, she had eaten three quarters of both courses. When I arrived she was very soundly asleep, she is usually very tired now after meals.

I tried to wake Isobel at half past one and again at two o'clock but could not rouse her. She was asleep when the doctor came at about half two, but he did not need to examine her. We had a long discussion in the nurses station. We agreed that the present rate of change was so rapid that within a few days Isobel might not be able to eat conventionally at all. He will start arrangements for a tube to be installed into isobel's stomach for feeding and supply of fluid. This was always likely to be needed at some stage but the rapidity of change in the last week has taken us by surprise. The tube is essential because Isobel is losing control of the muscles used in swallowing. It will take a week or ten days to set up the operation. The doctor confirmed that flexing, lifting and massaging Isobel's right arm was a good idea and should be continued but straightening the fingers was not worth doing if it caused discomfort (as it now does).

After the doctor had gone, Isobel remained asleep and I sat with her reading my book. Keith and Liz arrived to visit Isobel at 4pm. We sat and chatted while Isobel slept, then at about half four she woke up. Isobel understood who was visiting but was not able to speak at all apart from answering "yes" to one question. She fell asleep before Keith and Liz left at 5pm. I woke Isobel up again, this time without any difficulty, in order to get her ready for tea. I read to her from her book for about twenty minutes.

Iona had explained that yesterday she was only able to feed her mother by scraping food off the spoon behind the upper teeth. I found out that this this technique was needed as Isobel never opened her teeth more than about half an inch. Isobel was having much more difficulty swallowing and did not seem able to use the tongue effectively to mouth food around in the mouth. Often it was taking several minutes to deal with a single very small mouthful. In total the meal and drink took an hour and twenty minutes, the first course was about two thirds eaten, the desert was finished as was a beaker of tea. Isobel seemed very tired after the first few minutes. This was all far worse than on Tuesday and the value of the discussions then with the speech and language therapist already seem overtaken by events. After the end of the meal Isobel fell asleep.

In view of the struggle with this meal, I asked the nurse to tell the doctor tomorrow that I would like the tube installation to be expedited. A week ago it seemed best to delay this as long as possible; now it is urgent, it will make life easier for Isobel as there will not be struggles to get her to make the effort of swallowing food and drink when she is very tired.

I woke Isobel up at a quarter past seven and got her to drink just 100ml of orange squash; she could not manage any more. I read her book to her for about twenty minutes until she fell soundly asleep again. During this long visit Isobel only gave four single word replies to questions and did not speak any sentences. She did answer "no" when asked if she had any pain. I went home at twenty to eight.

I did not see Isobel today as I was in Islington, Uxbridge and Denham all day and did not get home until after 10pm.

Iona went in at lunchtime. She had a difficult time feeding her mother lunch but finally found a tactic which worked. Isobel only said a single word during the visit. I plan to go in for lunchtime tomorrow. I am due to see the doctor at 2pm, I believe the alternatives to the present feeding method will be raised. There will be a full report tomorrow night.

Iona and I went in to see Isobel today at 2pm. Claire, the speech and language therapist arrived soon afterwards. Isobel had missed breakfast today but eaten all her lunch and drunk all her other drinks. Isobel was asleep when we arrived, it took a few minutes to wake her but she was fully awake when Claire arrived. Isobel had been awake for a period at lunchtime and was probably already slightly tired when we started the investigations.

I gave Isobel a test drink of half a beaker of unthickened orange squash. She drank this fairly quickly with no problems while Claire felt her throat in order to judge the efficiency of swallowing. She felt that there was a real risk of drink finding its way into Isobel's lungs as she was not controlling the fluid within the mouth. We thickened the drink to "syrup" thickness and tried again, using the beaker spout again. Then we thickened the drink to "custard" thickness and spooned it in. Claire expressed the view that only the custard thickness was really safe and was being swallowed at the first attempt, the others were taking two or more attempts even when small amounts are given, liquid was slopping around in an uncontrolled fashion within the mouth between swallows. This is slightly disappointing as it will make giving drinks much slower. The ban on jelly and ice cream was confirmed - as these tend to liquify in the mouth and Isobel cannot cope with the free unthickened liquid. Isobel was clearly becoming too tired to swallow properly before the custard thickness drink was finished.

We all agreed that muscle fatigue while eating was now a significant factor which would prevent Isobel finishing some meals. Yogurt seemed to be the optimal thickness and never posed a problem as eating could be suspended while Isobel regained her strength, maybe fifteen or thirty minutes later. Claire is not really happy with anything except liquidised food, regarding even mashed potato as potentially dangerous. Grapes are completely out of the question, other fruit including banana must be liquidised. Chocolate is also ruled out, apart of course from chocolate mousse and yogurt. We agreed than given Isobel's sedentary lifestyle, one incompletely eaten or missed meal each day did not pose a problem to her overall level of nutrition. There might tend to be a move to smaller amounts being fed more frequently. Iona stressed that her mother was not a fussy eater and was always happy to eat what was put in front of her.

The present position is not stable and the strategies discussed today will very likely not last for more than a couple of weeks given the rapid rate of change in Isobel's condition. I confirmed I was aware that we were approaching a position where conventional eating may no longer be possible. Claire will meet with the GP to discuss this. She will also discuss with the Ellenor nurse a collar that will help to hold Isobel's head in position for swallowing. At present her head tends to fall to the left, a position which makes swallowing less efficient than if she was facing straight ahead - at present I get round this by holding her head in place with the right hand while feeding her with the left hand but it is far from satisfactory.

We made a further attempt to give Isobel some more of the custard thickness drink, but after three spoon loads she was too tired to continue. Claire left at about twenty past three, she will come back next Tuesday just before noon to observe Isobel have her lunch. I will come in at 2pm to see the doctor and discuss medium term strategies.

During these discussions Isobel was not able to contribute much apart from slurred single word responses. She was very tired and fell asleep within a few minutes of Claire leaving. During the investigations I had flexed her right arm at the elbow a few times but did not attempt much more, it was not badly swollen. Iona and I did some re-organisation in the room before leaving at about 3.40pm. I took home the fruit bowl with grapes and bananas, very depressing to think Isobel will not be able to eat whole fruit again. Iona and I went on to Bluewater where we equipped her with a pair of maternity jeans, her bump is starting to show now.

I went in to see Isobel just before 4pm. She was asleep when I arrived. She had missed lunch as she was so soundly asleep and had slept since breakfast apart from one drink.

I think Isobel must have been close to waking as it took only a few seconds to wake her and she was fully awake in a minute or so which is very unusual. She said that she did not feel hungry and did not want a drink. Her speech was similar to yesterday, a mixture of soft, slurred single words with the occasional sentence. I read to Isobel until her tea arrived at about twenty past five.

The first course was some kind of cheese, egg and potato mix which did not look appetising and was in the form of two thick beefburger shaped objects, but it smelled good and Isobel found it tasty, along with tomatoes. The second course was the usual standby, yogurt. The speech and language therapist has advised against jelly and ice cream while she is assessing Isobel this week. Both courses were consumed briskly with no problems. A beaker of fruit juice was also quickly dispatched, in small mouthfuls with intervals for breathing between mouthfuls.

After tea we chatted and watched television until half six, then I read to Isobel for almost half an hour. I massaged her right arm. This was less swollen than yesterday, apart from a lot of puffiness on the back of the hand. The second finger and the little finger were very rigid, the small finger much worse than usual. Altogether it took twenty minutes to sort out the arm and fingers. I read to Isobel for another ten minutes, then gave her a mug of tea which was again drunk in small mouthfuls without any problem. I went home at twenty to eight. The speech and language therapist comes again tomorrow at 2pm.

In the morning I called in at Bexley's Occupational Health Department to check they had received the consultant's medical report and passed it on to Hillview in connection with Isobel's commutation of her pension. They were not able to confirm the position, but phoned later to say they had not received the report, then found it in today's post. They will deal with it today or tomorrow and pass it on to Hillview who had the original claim last month.

I went in to see Isobel just before half past one. She was asleep when I arrived. The nurses were concerned that the deterioration in her speech sometimes made it impossible to communicate with Isobel, this had caused problems this morning when they asked Isobel whether she would have a shower. I agreed that she should be given two showers a week (she is washed in bed other days) without a need for her to specifically agree to this - she will not object, it is just that she does not positively assent. I expect more problems of this sort to arise in the near future, it is very difficult to see her unable to communicate her own view on these everyday matters. The drop in verbal communication has been very sudden. For some weeks it has often been necessary to ask her to repeat some sentences and she has done so more clearly and louder; she no longer seems able to do this with just a few exceptions.

I woke Isobel very easily, but our conversation was limited. She indicated that she would like me to read to her from her book and I did so for more than half an hour. At one point she closed her eyes and I asked if she was still listening, she replied "Of course I am listening, did you think I wasn't?". This was the only long sentence she said clearly during the visit, most other replies were single words. I think the problem is physical control of the muscles used for speech, not a problem deciding what to say.

Isobel's right arm was not too bad today; there was only a small amount of swelling of the arm and puffiness on the back of the hand. I spent about ten minutes massaging and flexing it. The index and third fingers and the thumb were flexible. The little finger was curled up rigid but fairly easily straightened and flexed. The second finger was a problem as usual and I could not fully straighten it as it was hurting Isobel.

Isobel indicated that she was comfortable and not in pain. I read to Isobel for another ten minutes or so before going home just after half past two. There is no doubt that there has been a sharp deterioration in her condition over the past two weeks and I anticipate a lot more problems will arise in the near future. It is depressing to think that she may never eat the chocolates and biscuits she was working her way through steadily until very recently.

I went in to see Isobel just before mid-day. She was awake when I arrived but not very alert. Her speech was very limited, I hardly got a clearly spoken word out of her during this visit. She managed just a handful of three or four word responses. This is much worse than it has been over the past few weeks. Much of her speech was inaudible and could not be clearly made out when she repeated it.

Isobel's right arm was not very badly swollen and a few minutes massage sufficed to loosen it up. This is, I think, a result of the great deal of work done yesterday. I read to Isobel from her book for about ten minutes before her meal arrived.

For lunch Isobel had beef with mashed potato, peas and swede. She started off briskly eating this but soon ran out of steam. the were two episodes in which she spluttered food over me and the bed. She finally cleared her plate after about forty minutes, there is no doubt this was due to tiredness and consequent slowness in swallowing. She could only manage a few mouthfuls of her desert, apple crumble. She drank all her soluble paracetemol with an additional half beaker of water to wash it down. I managed to get almost all of a beaker of thickened tea down her.

I went home soon after half past one. Overall Isobel was very poor today.

I went in to see Isobel at five o'clock. She was wide awake and watching television (in a rather casual fashion).

There was a slight gap between the bed and the wall, she had managed to push Rocky down in the bed and drop her right arm down in the gap. Inevitably it was very swollen as the hand and forearm had been below the level of her body. I spent a few minutes holding the arm up and massaging it, without any significant result. I propped it up using the pillow and two bears so that the hand was above the level of most of the body in the hope that fluid would drain out.

I read a little more to her from her book - we passed the halfway stage yesterday, the progress has speeded up in the past three weeks. For tea Isobel had scrambled eggs and liquidised tomatoes followed by yogurt. She ate this slowly and steadily with no problems. I asked for the mug of tea to be provided without thickening, as it could always be thickened using the tub of thickener in the room. I gave Isobel the tea in fairly large mouthfuls and she handled these without any problem. I have suggested to the carers that they can try unthickened drinks, and thicken them if they have difficulty. All of us have had some difficulty with thickened drink in the past few days.

After tea Isobel watched television until half past six while I massaged her hand and forearm, straightening all the fingers except the second. Then I read her book to her until almost seven o'clock. Isobel watched television while I very slowly managed to straighten the second finger completely and flex it backwards and forwards for a few minutes. This does cause Isobel some discomfort and has to be done very slowly and gently. Isobel had no other pain today and was a little bit livelier than earlier in the week.

Before I left Isobel had another beaker of unthickened tea which she again drank without any difficulty. Today Isobel's speech was patchy, but good at times. Once again there were a lot of complete sentences, sometimes said very clearly. However there were also a lot of one word responses and a lot of mumbling and slurring. The quality of speech varied during the visit, with about four periods of clear speech separated by longer periods of limited speech. I made sure there was no gap at the right hand side of the bed before going home at twenty to eight. Isobel was still awake and watching television.

I went in to see Isobel at five o'clock. She was awake when I arrived and has not been sick today.

I read to Isobel from her book until tea arrived. She was moderately alert and confirmed she was comfortable with no pain. I fed her tea of spaghetti (liquified!) and mashed potato, followed by yogurt. This all went down very easily, in small mouthfuls with pauses in between for her to swallow. The thickened tea was not so successful. Using a spoon (as I had done for thickened squashes yesterday) was tediously slow and I eventually resorted to feeding sips from the open beaker. The whole question of drinks needs a bit of thinking about over the next few days.

After tea I spent a few minutes manipulating Isobel's right arm and fingers, except the second finger which was exceptionally swollen and locked rigid. I had a little bit of trouble with the little finger but the arm itself was not very swollen and very flexible. Isobel's large black teddy bear Rocky, which I brought in yesterday is proving a much better arm support than a pillow. We watched television until half past six. Isobels speech today was a little better, there were a lot of properly constructed sentences although most replies and comments were still one or two words.

I then read some more to Isobel until about ten past seven. I then manipulated the second finger on the right hand and straightened it. With a couple of minutes the swelling substantially decreased. I then read some more to Isobel until she began to seem sleepy, settled her down in the bed and went home at twenty to eight.

I went in to see Isobel at a quarter past ten, having arranged to see June who would visit at about the same time. I arrived to find that Isobel had just been sick, bringing up the porridge she had eaten for breakfast at 8am. While the staff cleaned Isobel up (it still feels odd not to have to do this sort of thing for her) I met June at the entrance.

Isobel was not too bad considering that she had just been sick. Her neck was still slightly swollen but she had free movement on both sides. Her right arm was still moderately swollen, but not as bad as it had been. The fingers on the right hand were locked in a curled position but the swelling was not very bad except for the second finger. I postponed straightening the fingers until later as it causes isobel a lot of discomfort.

We sat and talked for about half an hour, although Isobel did not say a lot. She managed just a few short sentences, the rest of the time giving single word responses. She confirmed that she was not in any pain. Then the speech and language therapist arrived and June left for an appointment at Rochester Cathedral.

I can't describe in detail everything that Claire said and did, but it took an hour and a half and was most thorough. She had Isobel eating various foods and drinking while she listened to Isobel's throat with a stethoscope or felt with her hand for muscle movements in involved in swallowing. the main conclusion was that Isobel has weakness of the muscles involved in swallowing. A full mouthful is not being swallowed in one go but is taking three or four swallowings to clear. There is no sign that food is going into the lungs, Isobel still has sensitivity at the back of the mouth and this triggers coughing which warns us and her not to overload the mouth or try to swallow too much at one go. The difficulty with corned beef and chips two days ago are believed to derive from the sharpness of the chips. For the next week Isobel will have all her food liquidised and her drinks thickened to "custard" consistency. Mouthfuls will be smaller and care taken to ensure that one mouthful really had been swallowed before the next was offered. If this week goes well, Isobel will be tried on mashed food next week. A food log will be faxed through later today and Claire will return at 2pm on Tuesday the 9th of February. Claire left at about a quarter to one. I manipulated Isobel's right arm for a bit and stretched her fingers. I finished feeding Isobel some yogurt and a thickened drink; then read to her for a few minutes before leaving at a quarter past one.

I returned to the Centre just before five o'clock. I read Isobel's book to her for a quarter of an hour before tea arrived. Tea was liquified scrambled egg and liquified tomatoes, it did not look as bad as it sounds. Isobel ate it without any difficulty, then had strawberry mousse and thickened blackcurrant squash. She was not sick afterwards. We watched television for a bit and then I read a long section from her book to her before going at almost half seven to deliver some items to Iona who has been ill today.

I went in to see Isobel at just before five o'clock. The bed was in the same position and Isobel had a towel over the bed, she was half awake. The nurse explained that there had been two major vomiting episodes in the late morning and lunchtime. Isobel had ate her porridge for breakfast normally but had missed lunch altogether as she had shown signs of possibly vomiting again until well into the afternoon. I had noticed as soon as I arrived that Isobel's left foot and calf had slid out of the bed. The carer said that since this morning the kind of foot first sliding out of the bed which I had warned them to look out for when Isobel first arrived had taken place a number of times; so far it had not resulted in a complete fall from the bed. Owing to the risk of Isobel falling out of the bed the re-orientation of the bed agreed yesterday had not been implemented: I agreed.

Isobel's neck and arm were less swollen. She seemed rather tired and listless. I read to her for about twenty minutes. At first the left leg was constantly sliding out of the bed, this had been a major problem at home in the summer and early autumn. Normally this would be countered by the simple expedient of a cot side on the bed, but this has in the past always caused a violent reaction from Isobel with attempts to climb over the side; this is why the special low bed has been used for her. At first she was sitting up in the bed, as a precaution against vomiting. After a few minutes I decided there did not seem much risk of this and lowered the head of the bed partly, this immediately stopped the sliding leg problem. Isobel seemed to relax a lot over the course of just a couple of minutes and at the same time her speech improved and she used short sentences instead of single words.

When tea arrived at about twenty past five, I had to raise the head of the bed again, this caused the sliding leg problem to start again, although not so badly as before. I fed Isobel four egg sandwiches, she ate these with no problems and did not need to be reminded to swallow. Compared to the half hour spent on chips and corned beef yesterday, the sandwiches took ten minutes and the jelly and cream afterwards only took five minutes. There were a few little problems with her beaker of tea, as a result of teeth being clamped together while drinking, but it was better than yesterday.

After tea we watched television for a while and then I read some more of her book to her. Once again the sliding leg problem was stopped by lowering the head of the bed. During this period Isobel was happy and relaxed; with no apparent consequences of the difficulties earlier. The reason for the vomiting remains unclear. We agreed to try soft foods tomorrow and see if that helps, although all the food she had today was soft. I did not give Isobel any fruit today in case it was rough on her digestion. I stayed until about twenty past seven, Isobel was so happy and relaxed that I forgot to manipulate her fingers!

I went in to see Isobel just before three o'clock. She was asleep but woke up when I manipulated her right arm and wrist. There is less swelling in the arm but the second finger is even more swollen than usual. She said that she did not feel uncomfortable. Once again she was not very talkative. I fed her a few grapes.

The doctor came soon after three o'clock. She believes that the swelling is entirely due to immobility. The doctor and the nurses agree that the swelling of both arm and neck has reduced over the past few days, although we all agreed that at times there had seemed to be a random fluctuation in the amount of swelling of the right arm. We all agreed that the amount of Isobel's speech had dramatically decreased. The nurses had already discussed with the doctor the problems with feeding and giving Isobel drinks. They also find that she is forgetting to swallow unless reminded. They also have problems with drinks escaping from the side of the mouth when Isobel does not swallow. The doctor is arranging for a speech and language therapist to check the functioning of Isobel's swallowing. The doctor agreed that the elevation of the right arm should continue and that the manipulation helps. After discussion we agreed that tomorrow Isobel's bed would be rotated through ninety degrees so that she has reasons to look to her right, in order to encourage movement of the head.

After the doctor had gone, I fed Isobel a few more grapes while reading to her from her book. Isobel finished a half drunk beaker of squash and ate a banana with her beaker of afternoon tea. The was no great difficulty with the drinks apart from the need to remind Isobel to swallow. I helped Isobel order her food for tomorrow - liver and bacon for lunch and sandwiches for tea. I stopped reading to Isobel at ten past four as she was starting to appear tired. She fell asleep within a couple of minutes and slept until I woke her at twenty to five in order to prepare for tea.

Tea arrived a couple of minutes later before Isobel was properly awake (there is a lot of variation in tea times, because a lot of residents need to be helped with their food). Possibly because she was not fully awake, feeding her corned beef and chips turned into a saga lasting half an hour, by the time she finished the chips were stone cold. The problem again was that Isobel did not swallow. Many times she opened her mouth for another fork load of food, but had not swallowed the previous one. I was relieved when the eating of mandarin orange flan proved much easier and took only five minutes or so; her mug of tea was drunk without problems.

I fed Isobel a few more grapes while I read to her. After six o'clock Isobel again seemed tired and by about a quarter past six I stopped reading and spent a few minutes manipulating her fingers. The second finger was again straightened, much easier than last time so maybe that is more evidence that manipulation has a lasting effect. Isobel was asleep within a few minutes after I finished. The carers came in at about twenty to seven to change her (sometimes this happens before the night shift take over at seven, but often it is afterwards). I was keen to get Isobel to drink some more, and I helped her to drink a large beaker of squash. This proved much slower and more difficult than the previous drinks and some drink was lost out of both sides of Isobel's mouth, however about 95% was drunk. Isobel was still very tired and I left at about 7.10pm.

Although I had come in earlier specifically to see the doctor, I don't think Isobel can be expected to stay awake throughout long visits. Whenever Isobel is woken up it takes ten to fifteen minutes to wake her up properly and if she has only been asleep for a short time she does not seem to properly wake up at all. Long visits during which she has short periods (about half an hour) of sleep do not seem to be very helpful. It may be better to cram important activities such as eating and finger manipulation into a single shorter period of say an hour and a half and then let her fall asleep naturally while being read to.