I went in to visit Isobel at a quarter past five today. Keith and Liz visited earlier but I have not yet spoken to them. Isobel had not had a very good day. She had only ate half her breakfast and part of a pot of balanced supplement afterwards. Later in the morning she had just a few spoonfuls from another pot of supplement. She could not be woken at all for lunch. She drank modestly today, compared to a very large fluid intake yesterday.

Isobel was asleep when I arrived but woke easily when her tea arrived a few minutes later. She must have been very soundly asleep earlier as the nurses had doubts that she would wake at tea time. Isobel ate all the main course. She took a long time, as it was sometimes taking several minutes to clear each mouthful by multiple swallowings. There were a number of coughs and splutterings while she was eating, but virtually no food re-appeared. Isobel needed to take mouthfuls of drink alternately during the latter part of the meal in order to help her clear her mouth. She finished the beaker of high energy juice after, then ate a pot of yogurt more quickly.

Isobel was again not able to speak today. She indicated that she would like her book read to her; I did this for about twenty minutes until she fell fast asleep. I came home at just after half eight.

I went into see Isobel at 5pm. She had a good day. She ate three quarters of her Weetabix,a yogurt and a pot of balanced supplement for breakfast. She had another pot of balanced supplement after. For lunch she ate half of the main course but none of her yogurt dessert. During the afternoon she had another pot of balanced supplement. She had drunk very well both late yesterday and today.

When I arrived Isobel was awake, having just been changed by the carers. Tea arrived at once and Isobel ate her main course very easily and quickly. We moved on to the high energy drink and Isobel began drink this fairly quickly. When she was about half way through, Iona arrived. Isobel finished the drink without problems. Iona took over and fed the yogurt dessert to her mother. Today was a very pleasant contrast to the desperate struggle of yesterday. Isobel was more alert, looking round the room, but unable to speak (although she indicated she did not want her book read to her). Iona and I sat and talked to Isobel for a while. When her bed was lowered to a resting position Isobel was still awake although showing signs of tiredness and looking as if she would soon be asleep. Iona and I went home at half past seven.

I went in to see Isobel at mid-day. She did not have a good morning, eating part of her breakfast and nothing else. It had not been possible to get her to take her morning medication - this is mixed with water and thickened and provides 200ml of fluid.

I started to give her the medication but it was very slow. Isobel could not speak today. She was fairly unresponsive in all ways. Her lunch arrived after a few minutes and I begun alternating spoonfuls of the strawberry flavoured medication with the main course. Over the course of an hour Isobel took about half of her medication and three quarters of the meat, half of the swede, half of the mashed potato and a quarter of the Brussels sprouts (all puréed of course) amounting to half of the main course altogether. It was a very difficult job to get Isobel to eat this as she was having great difficulty swallowing.

After an hour I abandoned any hope of getting Isobel to eat more of her main course. We concentrated on getting her to finish the medication, which she eventually did. Then I began to give her some high energy drink. She drank half of this in less than half an hour but then fell very soundly asleep. It was clear she would take nothing more in the near future.

I left at two twenty, taking with me the Kalanchoe plant which has almost finished its second burst of flowering and needs re-potting. This sort of day, when all the time with Isobel trying to ge food or drink down her, is very depressing.

I went in to see Isobel at a quarter past five. Her file for recording food and drink intake had gone walkabout and the morning staff were not available so it was not until much later that that I found out what had happened earlier in the day. Isobel had eaten most of her bowl of porridge for breakfast, followed by yogurt and a pot of balanced supplement. She had however only had a few spoonfuls of her lunch.

I was surprised to find a radio playing at the head of Isobel's bed (especially as the television was also on!). A couple of hours later I found the explanation in a note from Pat Ball who had come to see Isobel this afternoon and left the radio playing classical music. This is a good and kind idea, but a surprising though consistent aspect of Isobel's illness has been that at an early stage she seemed to lose almost all interest in music. When traveling by car the only music Isobel expressed a preference for was the incidental music to the Lord of the Rings films and Nina Simone; she liked these played over and over again but then lost interest even in these.

Isobel's tea arrived just before half five. Eating was extremely slow and difficult with a lot of clenching of teeth. It took almost an hour to finish half the main course (which of course was cold by then)and about a quarter of a beaker of high energy drink; Isobel then fell soundly asleep.

I tried to wake her after an hour without success. After two hours I was able to wake her and she finished the drink very slowly. We moved on to the yogurt dessert and this was eaten slightly more quickly. During both stages of the eating and drinking Isobel was liable to minor coughing and spluttering. She was not able to speak at all today. Isobel was generally not very responsive but seemed to be comfortable most of the time. When she had finished the yogurt she fell very soundly asleep. I went home at twenty five to ten.

I was late going in to see Isobel today and did not arrive until twenty five past five. One of the carers was feeding Isobel the main course of her tea and she had already eaten about a quarter of it. Isobel had eaten her breakfast but only had a few spoonfuls of her lunch. She had not drunk as much as in the previous couple of days. Isobel was able to say a few rather unclear words when I first arrived but did not speak later on.

I took over feeding Isobel and she finished the main course without any problems. I started to give her yogurt and high energy drink; and Jacquie Martin arrived to see Isobel. As Isobel ate she became progressively slower and more tired. Isobel managed to finish the food and drink, but once again the meal was very slow, taking about an hour and three quarters. Once again Isobel was taking several poorly defined swallows to clear the mouth of one spoonful. Isobel fell asleep almost as soon as she had finished the meal. She had several small coughs and at one point dribbled a significant amount of saliva - it took some time before her bed could be reclined part way to the normal resting position. Isobel remained asleep and Jacquie and I left at about half past eight.

I went in to see Isobel at a quarter past five. Isobel ate breakfast and two pots of balanced supplement but barely touched her lunch as she could not be fully woken. She was asleep when I arrived but woke very easily. She was again able to give a few yes/no answers and at one time said "I know" in response to one of my comments.

I fed Isobel her main course, alternating with a beaker of high energy drink. It was apparent that it was taking her a long time to clear each mouthful from her mouth. As the main course included scrambled egg it was easy to see that when Isobel opened her mouth for another mouthful that some food still remained in her mouth. We talked about the need to clear the mouth and use the tongue to get food out of the cheeks and Isobel followed this advice. After finishing the main course, Isobel ate all her strawberry mousse and finished the drink. Her eating was very slow, but there were only a couple of minor splutters. Altogether the meal took two hours, including an interval of twenty minutes while a nurse gave her medication.

Isobel was very tired towards the end of the meal and fell asleep soon after she had finished. I went home at a quarter to eight.

I went in to see Isobel just after 5pm. The nurse reported that as well as eating and drinking fairly well, Isobel had suddenly talked in the morning and replied yes or no to several questions. Isobel ate a medium sized bowl of porridge an a pot of balanced supplement for breakfast; had another pot of supplement later in the morning but slept through lunch.

Isobel was awake when I arrived - not surprising as the telephone engineers were working in the short corridor directly opposite her room. As a by-product a refreshing (almost bracing actually) breeze blew through the open door at the end of the corridor. Isobel was able to confirm that she was comfortable, felt better and had eaten well this morning. She attempted to say several sentences but I could not make out a single word. This was frustrating but at least Isobel was clearly happier and more alert.

Isobel ate her first course alternately with a beaker of blackcurrant. Although slow, she finished both without any problem except for one very mild cough and splutter. She then ate a pot of black cherry yogurt, she was able to confirm that she was enjoying eating this. Isobel again tried to say some sentences but I was a long way from being able to understand them. Isobel's speech is slurred and unclear.

When Isobel had finished eating and drinking she confirmed that she would like some of her book read to her and I did this for over half an hour (we are now past page 200). Isobel was still awake although showing signs of tiredness. Her eyes were following objects and seemed to be focussing; this was more convincing than for several weeks. We sat and talked for a while, I felt confident Isobel was following what I was saying. Isobel dozed off for brief periods, but was still partially awake when I left at a quarter to nine.

I went in to see Isobel at half two. She started today by eating half her porridge for breakfast, but later ate all of a second breakfast! She ate a pot of balanced supplement later in the morning and has drunk very well all day. However she could not be woken at lunch time; nor did she have her paracetemol in water just after lunch.

I fed her the paracetamol in water which she took steadily but slowly. She had not finished it when the doctor arrived. The doctor checked her chest and confirmed that it was clear - Isobel is at constant risk of lung infections from taking food or drink down the wrong way. She said that Isobel's condition was much as expected, she is very fragile indeed. She doubted that sub-cutaneous hydration was an appropriate course if Isobel stopped eating and drinking again. Her condition varies from day to day and at some time a trough in her condition will result in death.

After the doctor had left, Isobel finished the paracetamol and water. Isobel ate another pot of balanced supplement. When tea arrived Isobel ate about three quarters of the main course and all of the yogurt dessert. Isobel was very tired after this, but I made a start on giving Isobel a water based cocktail containing her medication. She had drunk about two thirds of this when she fell soundly asleep. A nurse will give her the rest later, I could not stay as I had a teaching session tonight. I left at a quarter to seven.

Isobel has recovered amazingly well from the crisis of Friday and Saturday. She had drunk well over a litre of water so far today by the time I left, excluding the water added to the liquidised food and contained in the yogurt and pots of supplement. However, she might not survive another such crisis. She is in a very delicate condition and tumour growth may cause a crisis at any time. Isobel was able to answer a few questions today and confirmed that she was not in pain.

Sunday, part 2

I took Euan into the Centre at 5pm. Iona had arrived a few minutes earlier. Isobel had not eaten much since my earlier visit but had taken two small drinks.

Iona fed Isobel a small part, a quarter to a third, of the main course of her tea. Isobel ate very slowly but without coughing or spluttering. I was happy that she had taken some food and not too worried when she stopped eating, with teeth firmly clenched together. We switched to Isobel's soluble paracetemol that she had hardly touched before tea. Iona gave her some of this, until her mother seemed too tired to continue. Isobel did not seem to be in any distress. Iona left in order to take Euan home at 6pm.

After the children had gone, I started feeding Isobel the water with paracetemol again. Perhaps because it had been standing for a while it did not seem to form a stable, thick, form even when more thickener was added. As a consequence, each spoonful was very small and it took a very long time for Isobel to finish the whole beaker even though she did not have any special difficulty opening her mouth or swallowing. When she had finished the beaker Isobel was tired and fell asleep. While she was asleep I discussed tactics with Catherine who was again running the night shift. I would try to get Isobel to take half a beaker before I left, Catherine would again try to get her to take a drink in the middle of the night when she had rested. After Isobel had slept for an hour, I woke her. She drank half a beaker of blackcurrant squash, although she was falling asleep by the end - it was a correct decision not to try and get her to drink a whole beaker at that time.

A serious situation has been overcome today. Isobel is comfortable despite her limited fluid intake over the past three days. I will see the doctor tomorrow afternoon. I went home at twenty to nine.

Sunday, part 1

I went in to the Centre at half ten, on the way to teach at Petts Wood. As I came in Edmund told me that Catherine had got Isobel to drink in the middle of the night and she was now eating as well.

I had to wait a few minutes as Isobel was being washed. When I saw her she looked fine although she could not say anything. As well as drinking, Isobel has eaten a pot of balanced supplement. She seems to be back on an even keel again. I only stayed a few minutes and will go back in again this afternoon.

Saturday, part 2

Rose phoned from the Centre at about half six. She said she had spoken to the Ellenor; they were concerned that Isobel was so fragile that she was at risk of heart failure, so nothing has been done today. Isobel took a small amount of drink at tea time and has kept this down.

I went in to the Centre at just before 8pm. I had expected to be able to talk to Rose, who I thought was on a late shift but she had left. Isobel was being settled down for the night when I arrived. She was fast asleep but looked very comfortable. A nurse had tried without success to give her more drink shortly before I arrived. I sat with Isobel for a while, and when I thought she was showing signs of being less soundly asleep offered her some drink. I was not able to get her to take anything. Catherine, the nurse on the night shift, said she will try again at about 11pm - she has been successful in the past at getting Isobel to drink very late at night or in the early hours of the morning. I sat a little while with Isobel who looked very relaxed, then went home at 9.30pm.

Saturday, part 1.

My brother and Liz went in to see Isobel at mid-day. She was fast asleep and they only stayed for fifteen minutes. Isobel had eaten and drunk very little since Iona and I visited yesterday.

Iona and I arrived almost at the same time Keith and Liz left, but somehow managed to miss seeing them. Isobel's lunch had arrived and the carer was failing to get Isobel to eat anything. We took over and had the same problem. I managed to get several small spoonfuls of yogurt and a little thickened orange squash inside her teeth and observed what I thought were swallowing actions. However, after a few minutes all the food she had taken re-appeared gradually out of the side of her mouth, not accompanied by vomiting. It is apparent that Isobel is no longer able to swallow in any effective way but accumulates food inside the mouth temporarily - potentially dangerous as it may pass into the airway. Isobel is deeply asleep most of the time and does not appear to be in any pain or discomfort.

There is no panic at the moment over Isobel's failure to eat food. The greatly reduced fluid intake is concerning, although urine is still being produced showing she is not seriously dehydrated at present. The Centre are arranging for a doctor to authorise the establishment of a drip for rehydration and will also be speaking to the Ellenor Trust Nothing that has happened in the past few days is a complete surprise although it has occurred more suddenly than anticipated.

This was not a good day for Isobel.

She ate part of her breakfast but was very sick afterwards. She ate a pot of balanced supplement but could not be induced to eat any lunch or anything during the afternoon.

Iona and I went in a few minutes after 5pm and were intercepted by the charge nurse who explained the problem they were have with teeth clenched firmly shut. Tea arrived a minute later and Iona and I tried to feed Isobel. For most of the time her teeth were clenched tightly shut. Over a period of about twenty minutes I was able to slide a small amount of her main course (<5%) into her mouth. I failed to get her to take any drink. She was then repeatedly sick and over ten minutes everything that she had eaten reappeared; she was very sick indeed. After the nurses had cleaned her up we reconsidered the situation. There seemed no prospect of getting food or drink into her in the near future. The nurses will try again very late this evening (about 10.30pm or later has been successful in the past). Iona and I sat with her for a while before leaving just before half six - Isobel was asleep.

As well as the deficient food intake, Isobel has not drunk a large amount today. She may well be better tomorrow; if not we are heading for a serious situation within a couple of days.

I forgot to mention yesterday that Isobel had a shower in the morning, it did not cause the usual problems of exhaustion and vomiting.

I went in to see Isobel at twenty five past five. Luisa, Pam and Sue from Hook Lane School visited yesterday teatime but I have not spoken to them. Isobel had not had the best of days today. She ate half her breakfast but was sick afterwards. Later she had two pots of balanced supplement but could not be woken for lunch.

I was late arriving and a carer had already got her to eat the whole of the main course. I suspect she had eaten it so quickly because she was hungry. After a brief rest we moved on to the high energy drink which was also despatched quickly. We moved on to the yogurt, and Isobel started off at the same rapid pace. After the few few mouthfuls she slowed somewhat but was still faster than normal. The whole meal was eaten in a time not bettered for months; it seems a long time since she was demolishing meals in five minutes before Christmas. I massaged and manipulated Isobel's arms although both looked OK. The chiropodist looked at her feet today - there had been some dead skin on the feet. Isobel had her eyes open more than usual and was apparently looking at objects for a few seconds at a time and focusing on them. After Isobel had finished eating I talked to her for a while but she could not reply, although looking more alert than in the past few days.

I read to Isobel from her book for almost half an hour before she fell asleep. I did some rearrangements in the room before leaving at twenty to eight.

I went in to see Isobel today at mid-day, as I am teaching late this afternoon and this evening. Isobel had eaten half her breakfast, with a lot of difficulty. She had later had two pots of balanced supplement, as the nurses and carers find these easier to feed to her. They are having the same problems I have.

I fed Isobel her lunch. She was slow, and after the first half clearly became tired but she finished it all eventually. Isobel drank a beaker of blackcurrant squash, apart from a tiny amount at the end which she could not be persuaded to take. Altogether the lunch and drink took an hour and three quarters. Isobel was very tired and fell fast asleep at the end. Her eyes were sometimes open and now and again appeared to focus on something for a second or two but otherwise stared blankly at the ceiling. Isobel could not respond to questions. I left the Centre at 2pm.

Despite the difficulties of the past few days the level of nutrition Isobel is getting is not a cause for great immediate concern. I am sure she is continuing to lose weight, but not at a rapid rate. If the present level of nutrition could be maintained Isobel would get by for many months, but the tumour will change her ability to eat within a much shorter time span.

I went in to see Isobel at a quarter past five. She had eaten all her breakfast and a pot of balanced supplement after. She had eaten half her lunch and all of a pot of balanced supplement after. When I arrived a carer was already trying, with limited success, to feed Isobel her tea. The carer was trying to use alternate spoonfuls of yogurt, which Isobel strongly likes, to encourage her to eat alternate spoonfuls of the main course. This is an approach I can understand, although I have not used it for more than a couple of mouthfuls - it seems dishonest to treat Isobel like a child.

I took over feeding and Isobel ate all her main course although she was very tired. Isobel was again not able to respond to conversation. Her eyes were shut almost all the time and when open stared blankly. After an interval she finished her yogurt, very slowly. After another interval she drank a beaker of orange squash, very slowly, with teeth clenched together for long periods.

Isobel seems to be comfortable, but it is very difficult not being able to get any spoken communication from her. I read a couple of pages from her book to her, but she soon fell deeply asleep. I left soon after 8pm.

I went in to see Isobel at a quarter past five. She was asleep when I arrived but began to wake when I spoke to her. She had a good morning and afternoon; eating all or almost all of her breakfast and lunch as well as several pots of balanced supplement.

Isobel's tea arrived about half past five and she had finished almost all of the main course by about ten minutes to six when Keith and Liz arrived. She finished the first course and drank half a beaker of tea - the latter being left when it showed signs of re-liquifying. Helena, who was in Kings College Hospital with Isobel, then arrived; she had phoned in the morning to say she might drop in today. Helena is now an oncology nurse and is one person who has taken something positive from knowing Isobel during her illness - she had just begun her nurse training when she was taken ill and shared a room in Kings with Isobel. Isobel ate her yogurt dessert with no problems, Keith and Liz going home part way through it. Helena stayed for a long time chatting, I think Isobel realised who she was but I could not be certain although I had explained several times. Helena left at twenty past seven by which time Isobel was asleep.

I let Isobel sleep until almost eight o'clock, then woke her for another drink as she had only drunk half a beaker of tea. She drunk a beaker of orange squash slowly but without any significant problems. Isobel had just one very minor cough while eating the main course; there was just a little teeth clenching as she became tired while drinking the squash. Overall this was a good day for Isobel.

Iona and Jon went in to see Isobel early this afternoon and stayed for nearly an hour. Isobel had missed breakfast as it was not possible to wake her. She had eaten a pot of balanced supplement later. She had eaten lunch and another pot of supplement. The nurses commented to me later on that she had apparently been enjoying the balanced supplement very much. Iona and Jon found Isobel more or less asleep throughout their visit. Her eyes were closed but she sometimes seemed to respond slightly to stimulation.

I went in to see Isobel at a quarter past five. She was asleep when I arrived. I woke her about ten minutes later for tea. Isobel ate the main course of meat and three veg easily and quickly. After a few minutes rest she drank a high energy drink and yogurt dessert without any problems. Her eating was more efficient than it has been for some time with decisive chewing and some strong swallowing.

Isobel was not able to respond clearly to questions but I formed the opinion she was indicating she would like her book read to her. I read to her for much longer than usual until she fell asleep right at the end of a chapter. I manipulated and massaged Isobel's right arm; the muscle wasting does not seem to have got any worse. I came home at half seven leaving Isobel soundly asleep.

I went in to see Isobel at ten past five. She was asleep when I arrived. She had eaten little earlier in the day, not finishing breakfast and missing lunch although she had a single pot of balanced supplement. Dallas and Mike had called in during the afternoon on their way down to Ramsgate, but I have not spoken to them since. When they visited last week they found Isobel asleep throughout the visit.

When tea arrived Isobel was very slow to wake and slow to start eating - the problem of clenched teeth again. However, once she got going she ate the first course of cheesy egg and tomato easily and fairly quickly. The yogurt dessert and a beaker of blackcurrant squash were also finished quickly despite intermittent problems with teeth clenching.

After she had finished eating I began reading to Isobel but she fell asleep almost at once. I let her sleep for just over an hour while I read some manuals I had brought with me for just such circumstances. I then woke Isobel and after a slow start she ate a pot of balanced supplement fairly easily. Once she had finished, she fell soundly asleep at once. I washed her face and adjusted the bed, leaving at ten past nine with a sedum plant which has thrived on her window sill but now gets in the way of the orchids when they are moved so as to get some light.

I went in to see Isobel at a quarter past five. She was asleep when I arrived. She ate all her porridge for breakfast, and later ate a pot of balanced supplement. She ate three quarters of her main course at lunchtime and followed this by eating all the yogurt dessert and a pot of balanced supplement.

Tea arrived at half past five. Isobel was easy to wake. She ate the main course very slowly but without problems. A nurse appeared in order to give her medication when she had a few mouthfuls left and we agreed she would return in five minutes: I would not start on the high energy drink or yogurt dessert until after she had the medication. For some reason or another the medication was delayed for forty minutes and then took a quarter of an hour to administer. As a consequence, Isobel was more tired and eating her yogurt and drinking a beaker of high energy drink took ages, with the usual problem of clenched teeth happening a lot. Isobel fell very soundly asleep at once. I went home at twenty to nine.

I went in to see Isobel at mid-day. She was asleep when I arrived, She had eaten porridge for breakfast, had a pot of supplement after and then another pot in the middle of the morning.

Lunch arrived a few minutes after I did and Iona arrived a few seconds later. Isobel woke easily and ate her main course without too much trouble. Iona fed her mother yogurt dessert, again with no problems. Isobel seemed comfortable and was moderately alert but could not reply to any questions.

I was surprised to get a phone call on the Centre's phone while I was there. It was Bev from the Ellenor Trust regarding the neck support for use while eating. This was suggested some months ago but never appeared, it was not needed and I did not pursue its non-appearance. Now it might be useful, as I find I often need three hands while feeding Isobel; I left a message for Bev inquiring whether it could now be procured. It will apparently be the responsibility of either a physiotherapist or occupational therapist (neither of which currently attend Isobel) to produce this. I spoke to Edmund, he will see if the Centre's tame physiotherapist can arrange this or whether a referral from Dr Mohan is needed.

While drinking a beaker of blackcurrant squash Isobel became very tired and eventually fell soundly asleep. She drank half the beaker but could not finish the drink. Iona and I left at 1.30pm, stopping on the way out at The Chequers for a late lunch.

I went back in to see Isobel briefly at 8.15pm; mainly to move the orchids into the room from the the window sill where I had placed them. Isobel was fast asleep and had already been prepared for the night. She had eaten most of her main course for tea as well as part of her dessert, had another pot of supplement and drunk reasonably well over the course of the day.

Isobel had a fairly good day today, although the evening was difficult. I went in just after 5pm after dropping some shopping off at Iona's. Isobel ate her breakfast and a pot of balanced supplement after. She also ate her lunch, and then had another pot of balanced supplement. She drank very well in the first part of the day up to half past three in the afternoon.

It was extremely difficult to feed her the main course of tea, as her teeth were tightly clenched together for long periods. This obviously makes it impossible to feed her. The Speech and Language Therapist believes that sometimes a shut mouth is a signal that Isobel is still clearing her mouth from an earlier mouthful but that teeth are clenched when Isobel is actually trying but failing to open her mouth. It is certainly the case that clenched teeth are much more likely when Isobel seems to be unusually tired. During this long struggle today there were several periods when Isobel ate five or six mouthfuls normally but then clenched her teeth for ten minutes or more. She did eventually finish the main course. I then fed Isobel her yogurt dessert. This was eaten quickly and easily apart from a brief clenching of teeth in the middle. Isobel then struggled for over half an hour to drink a beaker of blackcurrant squash. She was exhausted and fell soundly asleep almost at once. I sat with her until half eight before coming home.

I went in to see Isobel just after 5pm. She was very soundly asleep when I arrived. She had eaten breakfast and a pot of balanced supplement after. She had also eaten lunch and drunk well.

Tea was rather late arriving, about twenty five to six. I had a lot of trouble waking Isobel beforehand and she was still nowhere near fully awake when the meal arrived. It took fifty minutes of non-stop effort to feed her the main course. Isobel had a lot of trouble opening her mouth and teeth were often tightly clenched. We moved on to try a beaker of high energy drink, Isobel finished this after a lot of trouble, taking forty minutes. She was very tired indeed, able to do very little for herself and with limited control of her eating and drinking. Isobel fell fast asleep. I left the yogurt dessert uneaten, washed her face and left at ten past seven as I had a teaching appointment. This was a very difficult visit, a complete contrast to yesterday.

I went in to see Isobel at 5pm. She was awake when I arrived and just about to start being fed her tea. It had not been possible to wake her for breakfast, but later she had eaten a pot of balanced supplement. She had eaten her lunch and another pot of balanced supplement after.

Isobel ate the main course of her tea quickly and easily. Then she drank a glass of high energy drink. Finally she ate her yogurt dessert. Altogether this was a very comfortable meal for Isobel, eating efficiently and without any difficulties. When she had finished eating I tried talking to her but she was not able to make any reply, although she seemed very relaxed. I read to her from her book until she fell soundly asleep. The nurse mentioned that for the past couple of days it has been very easy to give Isobel her medication - this is not always the case I know. I sat with Isobel until half seven, but then left in order to mow the lawn before the light went.

Iona went in to see her mother at 5pm and stayed for an hour and a half. Isobel had two pots of balanced supplement for breakfast and another one later. She was fast asleep at lunchtime and could not be woken, so she missed that meal - her teeth were firmly clenched together. Isobel drank moderately well during the day. Iona fed her both courses of her tea and a beaker of high energy drink with no problems. Iona talked to her mother about her scan and the baby, she thought Isobel was listening and understood what she was saying.

I went in to see Isobel at 7.50pm, after I had taken Euan home from Gravesend. Isobel was very soundly asleep and seemed relaxed. As she had eaten and drunk sufficient during the day I did not wake her, but sat with her until 9pm.

I went in to see Isobel at 5pm today. She was asleep when I arrived. Dallas and Mike had been in to see her during the day but I have not yet spoken to them. Isobel ate breakfast and a pot of balanced supplement after. She ate must of her main course for lunch and all her yogurt dessert. She has drunk well today.

I fed Isobel the main course of her tea; she ate it easily and quickly. She finished a high energy drink after, priority being given to this over her dessert, as discussed earlier in the week. Isobel then ate her dessert easily. Her eating performance was the best for some time. She did become tired towards the end of the meal, but this was slight compared to previous days. She fell asleep after the meal and I left at just after half six to pick up Euan and transport him to Gravesend. He is staying with Luke overnight as I am working on the electrics at home tomorrow.

I returned to the Centre at just after half seven; Isobel was asleep. I let her sleep on for a while, until she showed signs of stirring. I woke her fully and fed her a pot of balanced supplement, she ate this very easily. I gave her a description of Iona's 4D scan which she showed us at lunchtime, we will show her the film on the laptop and bring a picture in for her wall. While I was cleaning her up after the meal she replied with a very slurred "yes" when I asked if she wanted me to read from her book, when I confirmed that I would do so, she said "yes" again very loudly and perfectly clearly. I tried to get her to reply to questions about how she was feeling but got no further response. She appeared to be comfortable, but this is not the same as getting her own confirmation of this. I read a long section of The Hobbit. Isobel paid attention at first, but after twenty minutes began to fall asleep and was fast asleep a few minutes later. I went home at half nine.

I went in to see Isobel just after 5pm. Keith and Liz were already with her, she had been asleep since they arrived. Isobel had eaten Wheetabix for breakfast and had a pot of balanced supplement after. She ate half of her main course for lunch and a quarter of her semolina dessert. She had drunk well during the day.

Isobel's tea arrived a few minutes after me. I spent ten minutes failing to wake Isobel up in order to eat it; then Keith and Liz left. I had begun to think that I would not be able to wake Isobel at all, but soon after, Isobel woke sufficiently for us to make a start eating the main course. This was eventually finished but Isobel repeatedly had difficulty unclenching her teeth. By the time she finished she was exhausted and fell deeply asleep without starting her yogurt dessert or drink.

I let Isobel sleep until a quarter to eight. It took an hour and a quarter of desperate efforts to get her to drink a beaker of blackcurrant squash and to finish her yogurt dessert. Once again she was often unable to part her teeth. It is the opinion of the Speech & language Therapist that when this happens, Isobel is trying to open her mouth - it is different to her conscious resistance to opening her mouth at all when she has not finished swallowing the previous mouthful. I washed her face and went home at a quarter past nine.

After an early start to get to Belvedere Polling Station by 6.30am I was home by half nine to cook an apple crumble for Iona. I went with the children to vote soon after eleven, then went in to see Isobel at a quarter to twelve. Isobel had only had a pot of balanced supplement for breakfast. Isobel was fast asleep when I arrived.

Victoria, the Speech and Language Therapist arrived at noon and lunch materialised a couple of minutes later. I fed Isobel lunch while Victoria observed and sometimes felt Isobel's throat. She said she was very happy with how Isobel was being fed, including a number of minor aspects which I had either not understood or not thought important. She was especially keen about me talking to Isobel before each spoonful about what was on the spoon. She confirmed that Isobel's swallowing was very variable in strength - this was already suspected as audible and visible swallows occurred at intervals of five or ten minutes while she was eating. Other swallows are not easily detectable by me although Victoria could say when they took place (she said that 80% of her work as a community SLT was involved with swallowing and only 20% was conventional speech problems). As already known, Isobel is usually having to swallow a number of times to clear her mouth after taking a fairly small spoonful of food. Isobel ate all of the first course and we moved onto her custard dessert. She ate about half of this, getting gradually more tired. This was a good thing as one of the aims of having a lunchtime observation was to allow Victoria to see the fatigue effect and to judge how it could best be handled. She suggested that with the addition of high energy shots to some drinks, that these should be given a higher priority than dessert. Today we switched to the drink, leaving the second half of the dessert. Isobel finished the drink, getting slower and slower and taking a long time. By the time she had finished the drink she was very tired. She fell fast asleep with no possibility of finishing the dessert. These difficulties were expected at lunchtime, Isobel often misses lunch altogether and generally performs better at tea time. Apart from giving more priority to the energy enhanced drinks and pursuing the matter of the positioning collar Victoria did not think that anything could be improved. She did not arrange another date for a visit but will be in touch in a couple of weeks time. I did not stay long once Victoria had left, I went home at a quarter past two. The process of eating lunch took well over an hour and a half and left Isobel exhausted.

I came back in at five o'clock. Isobel had been fast asleep all afternoon. She ate the main course of her tea without difficulty although clearly very tired. She had a couple of spoonfuls of normal blackcurrant squash and then ate all of her yogurt dessert increasingly slowly. When she had finished her dessert she could only manage a couple of spoonfuls of drink before falling deeply asleep. This was not surprising after her efforts at lunchtime. I sat with her for a while but there was no sign of her waking. I came home at half seven.

I went in to see Isobel at 5pm. She was again very soundly asleep when I arrived. She had eaten Weetabix for breakfast, and the nurse who fed her spoke enthusiastically about how well she ate. She had a pot of balanced supplement later in the morning. She could not be woken at all at lunchtime. When she could be woken in the afternoon she had two pots of balanced supplement.

I fed Isobel the main course of her tea, she partly woke up but was very unresponsive apart from eating well. There were two occasions when she coughed and spluttered, on the second of these she sprayed me and the chair with the equivalent to about two teaspoonfuls of food. She was not able to make any reply to questions. There was no change to her arms. She ate her yogurt dessert fairly well. She was becoming tired and it took a long time and some difficulty to give her a beaker of juice with high energy supplement. When she had finished this she at once fell deeply asleep. After washing her face I left at almost half past seven.

The Speech and Language Therapist is coming to see Isobel at lunchtime tomorrow, it will be interesting to see if she can be woken.

I went in to see Isobel just after a quarter to five. She did not drink anything after I left last night but had drunk well today. She ate porridge for breakfast and a pot of balanced supplement after. She ate half her lunch and a pot of balanced supplement after.

She was asleep when I arrived but woke fairly easily and I began giving her a drink of blackcurrant squash. She was half way through this when tea arrived. She ate the first course fairly quickly, although there were two longish pauses while she got over one minor and one larger spluttering event, the latter covering me and the chair in a spray of food. Isobel had some of the remaining squash to wash down the first course. She ate dessert of chocolate mousse easily and finished off the squash. By now she was showing signs of tiredness. The drink of juice that had arrived with the meal had a strange aroma of strawberries, indicating I think that one of the high energy shots had been added. After a break of only a couple of minutes while I cleared up, Isobel drank the juice easily but slowly, with long pauses between mouthfuls.

When we had finished the eating and drinking I started reading to Isobel from her book. After only two pages she fell soundly asleep. Isobel's arms were about the same as yesterday. She was not able to reply to questions today. I left at ten past seven and delivered election leaflets until 9.30pm.

I went in to see Isobel at 5pm. She has had a fair day. She ate all her porridge for breakfast, followed by a pot of balanced supplement. She did not eat lunch but had a pot of balanced supplement early in the afternoon. She had drunk reasonably well, some high energy "shots" are being added to drinks.

Isobel was very soundly asleep when I arrived. I brought the second orchid in with me. Tea was delivered a quarter of an hour later. Isobel was slow to wake but ate her main course easily. There were several incidents of spluttering, these seemed to be related again to a runny nose; they interrupt eating but don't seem to make chewing or swallowing more difficult. She drank half a beaker of tea before the reaction between the thickening agent and the milk fat turned it runny again. Isobel did not have a problem eating her yogurt dessert but was clearly very tired. She fell very soundly asleep immediately she had finished eating.

I let Isobel sleep for an hour while I read the book I had brought with me. Both her left and right hands were tightly curled in a claw like position. For much of the time slight tremors were shaking her left arm. I prepared a beaker of thickened blackcurrant squash but could not wake Isobel to drink it. Her teeth were firmly clenched shut; after forty minutes of intermittent attempts to wake her I gave up. The nurses will make another attempt at 11.30pm when she will have had a long sleep. I left at 8pm.

There is no doubt the maximum depth of sleep is increasing, although the proportion of the day asleep may not be changing much. Failure to wake on at least one occasion is almost a daily occurrence.

This was a better day all round for Isobel.

Although all she ate for breakfast was a pot of balanced supplement, she ate half her lunch and another pot of supplement. She drank fairly well, and high energy supplement is now being given as a drink. Soon after lunch my brother and Liz arrived to visit. Isobel was at least partly awake for part of the time. Liz said that Isobel squeezed her hand with her left hand and she felt that she was trying to communicate although she was not able to say anything.

I arrived at just after 5pm; Isobel was fast asleep. When tea arrived she woke easily and ate the whole of the main course reasonably quickly. After a short interval Isobel ate her yogurt dessert quickly, but slowed considerably while being fed a beaker of blackcurrant squash. She fell asleep after. While Isobel was sleeping I removed the zygocactus as all the flowers had faded except one; after a week or two in the house adjusting from the high temperature of Isobel's room it will be installed again for the summer in the branches of the hornbeam tree where it spent last summer. I brought in with me one of the two orchids Isobel was given when she was first ill by Ursula and Dallas. They have both come back into flower after a short break, I will bring the other one in tomorrow.

I woke Isobel, but she was very tired. I fed her a pot of balanced supplement and a beaker of orange squash, but this took well over an hour owing to her tiredness. Her right arm looked alright. Her left arm seemed to be locked in a flexed position. I experienced the same hand squeezing that Liz had, but I do not know to what extent Isobel is able to control it. The left hand is showing a tendency to become locked in a claw position in the same way the other hand did a couple of months ago. After Isobel had finished the second beaker of squash I read a few pages from her book to her but was not surprised when she fell asleep. I sat with her for a short while, gradually lowering the bed to a horizontal sleeping position (this is done gradually after food and drink to minimise the risk of vomiting). I left at ten past nine.

I was delayed while delivering Euan to Gravesend and did not reach the Centre until a quarter past five, Iona arrived one minute later. Isobel had eaten her breakfast and lunch, and drunk well during the day. She was already being fed tea when I arrived. For most of the time I just sat around while Iona did almost all of the feeding. Isobel was sleepy, but finished her main course and yogurt dessert, albeit rather slowly. She did not speak in response to conversation. Her arms seemed OK today.

Iona gave Isobel a beaker of blackcurrant squash to drink. She fell asleep part way through this but after a few minutes I woke her and she finished the drink. We tidied up Isobel and her room a bit, before leaving just before half seven.

Isobel remains very sleepy all the time, but the feeding problems of a few days ago seemed to have passed. She is still sensitive to pain, as she winced when I accidentally caught her foot on the end of the bed when re-aligning her legs after adjusting the bed. This suggests she is not in continuous pain as a result of the tumour. Her slight cold seems to have gone.