Funeral arrangements

Isobel will be cremated as she wished. There will be a short service before hand.

The funeral will be on Monday 19th July at 3.30pm at Falconwood Crematorium.

More details at the weekend.

Isobel's death. Friday 25th June.

Although it may sound strange, it was pleasant to sit with Isobel through last Thursday night. She was completely relaxed and at peace. She was so weak that in the past few days any kind of disturbance set off a period of erratic or laboured breathing, but once her syringe driver had been adjusted, all the way through Thursday night she breathed steadily although shallowly. She was asleep all the time, although her eyes were often open. Even when she was washed and put in a clean nightdress early in the morning, the disturbance to her breathing was brief.

When I got home on Friday morning I spent an hour painting, then woke Euan. He had largely recovered from the problem with his hands. We planned to return to the Centre at mid-day or soon after. I had breakfast and did some tidying, then had a leisurely bath. While I was in the bath Iona phoned to say that Isobel's breathing had become erratic. Euan and I quickly left for the Centre. At one point Iona thought her mother had stopped breathing and called the nurse to check if she was alive, but as the nurse arrived Isobel took a breath.

Euan and I arrived at the Centre at 12 noon. Isobel was was still just as relaxed but her breathing was somewhat erratic - she would be breathing normally but would sometimes pause for the length of time normally taken for several breaths before breathing again. It was good judgement by Iona to phone us when she did and hurry up our return to the Centre. There was no indication that death was imminent and her condition remained stable for about half an hour. At half past twelve there was a change in the breathing pattern, breathing became more erratic and progressively more variable, some breaths shallow and others deep. At no time was there any struggling for breath. Within a few minutes it was clear that this was the final stage. Nothing dramatic occurred. Isobel's appearance did not change and was still peaceful. The space between breaths increased until it was almost a minute. Isobel drew a breath at 12.45 and did not breath again. After two minutes I felt certain she had died. As I stood up to fetch the nurse to check, a change in skin texture took place, I have not seen this before when someone dies. Iona pointed out that her arms had developed goosebumps. the nurse came and confirmed that here was no pulse or other signs of life. We sat with Isobel until Dr Mohan arrived rather more than half an hour later and examined Isobel and completed the necessary paperwork.

Isobel had a gentle death. For her it was a release, there was nothing left to keep her alive. The damage done to her brain by tumour growth in the final few weeks must have been terrible. Myself, Euan and Iona did not feel any desperate sense of loss at this time. We have had long enough to think through what was happening and to prepare ourselves. We felt it was just a release for Isobel. She has borne so much in the past few years.

I had intended to write an account of Isobel's last day, but will now do this tomorrow.

Today Iona and I cleared out Isobel's room at the Centre. We had not been looking forward to this but it only took about an hour and we felt much better afterwards. A separate trip was made to collect the wheelchair which I will return to the Bexley Wheelchair Trust next week. The only item remaining to be removed from the Centre is Doug's old chair, it must be over a hundred years old but was extremely comfortable.

I will be seeing the undertakers on Monday about the funeral arrangements. In line with Isobel's wishes her body will be cremated. Locally there is a backlog of cremations owing to furnace renewal, so the funeral may be delayed longer than usual.

Friday night

Most of the readers of this blog will already have heard from me by phone, or indirectly through third parties.


Isobel died at 12.45pm today.

She suffered no pain and was relaxed for the last day.

More tomorrow.

Friday morning

Isobel's condition is only a little weaker than 24 hours ago. She was seen again by the doctor yesterday afternoon. Her mix of medications has been adjusted and increased; her syringe driver is now attached to what I call a horse syringe. She remains unresponsive, although I believe she sometimes still hears sounds as very slight reaction to noises sometimes occurs. The increased medication is doing a good job of keeping fits at bay - the increased tendency to fitting is a result of ever increasing brain damage as a result of tumour growth.

Iona was greatly buoyed up during Thursday afternoon by a long chat with Martha, the former Ellenor nurse standing in for Dawn Dark who is on leave. Martha confirmed that there was no hope of survival for more than a day or two. Euan and I went into the Centre just before 7pm last night. The increased medication has also controlled the tremors of left arm and leg, these are now rarer and much less intense. Iona went home at a quarter past eight, taking Euan with her - he has had a worrying problem with his hands swelling up and ran a fever overnight so he has not been getting too close to his mother even when he was in the Centre.

Isobel had a restful night. Some laboured breathing took place during the evening but breathing was relaxed and steady throughout the night. Isobel was washed and had a change of nightdress before 7am. After, her breathing was laboured for about twenty minutes but then settled down again.

Iona arrived at 8am and I went home for some sleep a few minutes later.

Thursday afternoon

There has been no major change in Isobel's condition. She remains completely unresponsive. Breathing is more shallow and at times labourered. Drug doses have been modified and are controlling the tendency to have fits at the moment. There is no indication that she is in pain (the cocktail of drugs being administered constantly by syringe driver includes some morphine).

Iona and Jon were with her through the night; I took over at 7am; Iona returned at 1.30pm. I am about to get a couple of hours sleep before taking over from Iona at 6pm.

Unless anything happens, next blog will not be until tomorrow morning.

Wednesday

I went back to the Centre at 11.30am. While I had been away Iona had gone to her midwife appointment. Euan had observed a number of major fits and emergency medication had been injected. After this Isobel's condition stabilised for the remainder of the day, although minor tremors of the left hand side continue.

We are rotating attendance with Isobel so that there is always one family member with her, usually two. We graciously permitted Euan a trip to Gravesend in order to watch World Cup football. The night shift to about 7am Thursday is being covered by Iona and Jon (they have forced me to go home!). Euan and I came home at 10.20pm.

During Wednesday there has been no major change in Isobel's condition. She remains relaxed. She is asleep for about 70% of the time and apparently unaware of her surroundings for the remainder of the time. Her breathing is shallow but regular. The syringe driver remains in place.

Tuesday pm to Wednesday am

Euan and I went into see Isobel at half four; having spoken twice by telephone to the charge nurse, Edmund, regarding her deteriorating condition. Iona arrived a few minutes later.

Isobel was unresponsive and breathing erratically. She had not been able to take her medication earlier in the day and had just received some emergency injections pending the setting up of a syringe driver. Shortly afterwards a syringe driver was installed to deliver a cocktail of medication including morphine, as it is no longer possible to be certain that she is not in pain, and pain is very common in the final stages of glioblastoma. Her breathing became much more regular and relaxed in less than an hour. Jon arrived later in the evening and took Iona and Euan back to our house in order to collect some bits and pieces for me. Iona and Jon dropped them off to me and I stayed overnight with Isobel. For most of the time she was relaxed and breathing steadily with no sign of discomfort. At 2.30am she brought up some phlegm, and again at 5am; this did not appear to discomfort her.

Iona, Euan and Jon came in at about 8.15am (Jon's shift does not start until 10am today). I went home at 8.30. Isobel remains as comfortable as she can be.

I went in to see Isobel at 2pm. Iona had arrived a minute earlier. Today Isobel had eaten only a quarter of a pot of balanced supplement. She had drunk a moderate amount. Isobel was asleep when we arrived. Isobel was breathing noisily, with her mouth open, very unusual.

Bev, the Ellenor nurse, appeared and did not know about the planned visit from Dawn Dark (who is in effect her senior). Bev commented that the noisy breathing sounded like a chest infection and asked us to point this out to dawn for checking if she had not returned when Dawn arrived.

Pat Ball (Chris' mum) called to see Isobel. We chatted for a while, then Bev reappeared. She said there had been a mix up and Dawn would not see Isobel today - she was on leave this week. However the doctor would be with her in a few minutes and would check Isobel's lungs. The doctor arrived and confirmed that she thought Isobel had an infection in one lung. She would prescribe antibiotics for this. This lung infection is undoubtedly caused by some food or drink finding its way down the wrong tube, I feel that Isobel is very lucky to have escaped this so far, bearing in mind the swallowing difficulties she has had for a while. We discussed various other problems Isobel has. The phenytoin assay results are not yet to hand. We agreed that it would in any case be difficult to match the medication to the varying need as the tumour caused more and more damage. Nothing else discussed was a surprise to us, nothing but further difficulties lie ahead.

After Pat left, Iona and I did not stay long as Isobel was fast asleep. She had half woken a couple of times during the visit and doctor's examination. Several times she produced a short sound, almost a yelp. The doctor attributed this to the breathing difficulty caused by the lung infection. Iona and I left at half past three.

I went in to see Isobel at 5.20pm today. She had only eaten a pot of yogurt since last night. She had drunk a number of small drinks, so the danger of dehydration is relieved. She had taken her phenytoin medication orally today. There had been no more major fits but minor trembling of the left arm and leg continues. The results of her blood tests will be available tomorrow and the phenytoin level will if required be adjusted. All of the phenytoin is being given orally in the morning now - the advantage of having two doses to even up the level in her body over the whole day is outweighed by the difficulty (or impossibility) of getting Isobel to take the evening dose. Dawn Dark from the Ellenor trust will visit Isobel after 2pm tomorrow afternoon, Iona and I will also be there.

Isobel was asleep when I arrived today. I managed to feed Isobel about eight teaspoonfuls of scrambled egg and tomatoes. After this she ate a whole pot of yogurt very slowly. Isobel was sometimes able to swallow on request; at other times she cleared her mouth by repeated weak swallows over a period of time. Isobel had a small amount of blackcurrant squash, but soon became very tired and unable to swallow, retaining the drink in her mouth. Her eyes were a little better, but still not right. Her hands were both clenched into claws, the arms were not significantly swollen. Isobel had no control over either arm (although partial control of the left arm may return). Isobel fell fast asleep, I cleaned her face and mouth, checking that very little drink had been retained in the mouth. I went home at twenty past seven.

Today was another difficult day for Isobel.

I went in to the Centre a few minutes after 5pm. I just missed Dallas who had left just a few minutes before I arrived, en route to a cultural evening in Blackheath. Catherine (the nurse) was having a very difficult time trying to give Isobel a cocktail of paracetamol, water and supplement. I took over and was only able to get her to take about 60ml (out of 200ml) in over an hour. Isobel had only eaten half a pot of balanced supplement earlier in the day. She had taken the phenytoin orally and plans for a syringe driver have been postponed. Isobel was having trouble swallowing and was holding drink in her mouth for prolonged periods of time - after I had given up trying to get her to take the medication and cleaned her up, a mouthful of medication was spat out almost half an hour later. She was very tired and kept falling asleep.

For the first time ever, I sent back Isobel's tea when it arrived as there was absolutely no chance of getting her to eat it. A further attempt to get her to take the medication will be made later in the evening - at least she had taken the more more important phenytoin earlier. Isobel had taken a couple of small drinks.

Dawn Dark from the Ellenor trust is coming in on Monday afternoon and I will see her then.

Isobel's eyes seemed a little better, although still not completely back to normal. Her right arm was not too swollen. She was not able to speak. She could still hear, and would try to swallow in response to my request. Her eyes sometimes focussed on objects or people and followed them.

I went home at a quarter past seven.

I went in to see Isobel at a quarter past four. Isobel had eaten none of her breakfast or lunch but had taken half a pot of balanced supplement in the late morning. She had drunk several small amounts.

I started to give her some thickened blackcurrant squash. This was desperately difficult work, as once again her teeth were clenched shut most of the time. Over the course of an hour she drank half a beaker. Isobel only ate two teaspoonfuls of the main course of her tea. A further hour was spent getting Isobel to drink half a glass of high energy drink.

It has been very difficult to get Isobel to take her medication orally over the past few days. If difficulties recur tomorrow, after discussion with Dawn Dark the Ellenor Trust supervisor, a syringe driver will be used. Dawn will come to see Isobel on Monday.

Isobel is not taking sufficient nutrition at the moment to preserve her body mass, but this is not a critical problem. More worrying is the struggle to get her to take sufficient fluid. She is more or less permanently on a knife edge.

The trembling of the left leg and arm were less today. The nurses are concerned that she is suffering "silent fits". It is clear that further problems are occurring within the brain. These are probably partly due to the destruction of healthy brain tissue by tumour growth and partly to pressure build up as a result of the increase of total tissue volume within the brain as a result of the increase in tumour volume.

Isobel's right arm was again rather swollen today, I manipulated and massaged it. Both the left and right hands were locked into a claw position. It can be uncomfortable for Isobel if the hands are opened, so I did not attempt this.

Isobel's conjunctivitis was rather better today.

After I had washed Isobel's face I left the Centre at a quarter past seven.

Thursday part 2

I went in again to see Isobel at half past five. She had not eaten or drunk anything since my previous visit - Red had just decided he would not be able to get her to eat any of her tea as her teeth were clenched firmly shut. I took over and spent half an hour getting her to take a quarter of the main course. This was only achievable by sliding a spoon with a little food on it between the teeth when they momentarily relaxed and scraping the food off against the upper teeth.

Isobel drank half a beaker of high energy drink in the same way; this took three quarters of an hour then Isobel fell very soundly asleep and could not be roused. I cleaned her up and left at just before 7pm. I took one of the orchids home which had begun to suffer from the low light levels and had dropped most of its flowers.

Thursday, part 1

I spent a large part of the morning on the phone sorting out the position regarding organ and tissue donation from Isobel. Unfortunately because the blood:brain barrier was breached during the debulking operation in January 2008, her organs cannot be used for transplants. After further investigations in appears that most of her tissue is excluded on the same grounds and the last possibility, her corneas, are excluded as a result of the long term use of steroids. Not entirely a wasted effort as it inspired me a few weeks ago to sign up to be recycled and the Blood Transfusion Service now takes a different view on sufferers from hereditary guttate psoriasis so I can begin to donate again for the first time in twenty years.

I went in to see Isobel at a quarter past twelve. Isobel had eaten and drunk nothing today, nor did she drink anything last light after I left. She was asleep when I arrived. Lunch was produced a few minutes after I had arrived. I concentrated on getting Isobel started on a beaker of high energy drink, not easy as her teeth were firmly clenched for the first ten minutes. After I had managed to get her to take a little drink, I tried the food and she ate about a quarter of the main course. While she tried liquidised carrot and greens there was no real problem apart from the teeth not fully opening. However two or three spoonfuls of mashed potato triggered some coughing. I did not try to get her to eat any meat as we have discovered from previous experience that this triggers coughing (even when mixed in with vegetables). Isobel finished the beaker of high energy drink over the course of another half hour. The final mouthful was not swallowed at once but held in the mouth for ten minutes. Isobel then fell asleep and I left just before half past two.

Today was a difficult day for Isobel. She ate half of her breakfast, but had a major fit later in the morning and was sick after. The nurses report that the fit only affected the left arm and left leg. These have had intermittent tremors for some time. These are the direct result of damage to the brain caused by the growing tumour. During and after the fit Isobel's blood pressure was greatly increased; this is consistent with earlier crises such as the mis-diagnosis in October 2008; the events leading to the discovery of the tumour in December 2008 and a temporary loss of the power of speech while visiting her mother in 2009. When Isobel was at home in 2009 she had three whole body fits, each lasting less than ten seconds. It has been rather surprising that further whole body fits have not occurred, but some kind of fits were expected as the damage to healthy brain tissue increased with time.

Rosemary came to visit just as the staff were cleaning Isobel up. When she saw Isobel she seemed very restful and half asleep. Rosemary sat and talked to Isobel for an hour. Because of the fits and sickness Isobel did not eat at lunchtime.

Later in the afternoon Pat Ball (Chris' mum) visited, but I have not yet spoken to her. Isobel was seen by the doctor soon after the fit and a blood test to check the level of phenytoin (the anti-fitting drug) will be done tomorrow. The dosage of phenytoin will be adjusted if this seems appropriate. I believe that Isobel has been very fortunate to escape having more serious fits earlier and that any tinkering with levels of phenytoin dosage will only stave off the inevitable for a short time. Her blood pressure medication is being reviewed. This is prudent as the blood pressure peaks reflect physical events within the brain that may well become more frequent, but this medication cannot prevent the events within the brain taking place.

To add to her other problems, Isobel has conjunctivitis and is having eye drops to counter this.

I went in to see Isobel just after 5pm. She was just about awake when I arrived. I tried to get her to eat tea, but her teeth were clamped firmly shut almost all the time. In three quarters of an hour I could only get her to eat four part teaspoonfuls of the main course and one teaspoonful of yogurt dessert. After this I switched to trying to get her to take a drink, but in half an hour she only took about 50ml - the amount drunk was rather larger but some re-appeared after being held in the mouth for some time. On a few occasions Isobel did swallow in response to spoken requests, evidence that she is still hearing and processing what she hears. She is not however able to control her muscles consistently and when she swallows the action does not fully clear the mouth.

It is difficult to describe but I felt there had been a step change in how Isobel was dealing with food and drink, she was less engaged and her eyes stared blankly for much of the time. We reached a point at which no further drink was being swallowed - anything in the mouth re-appeared after a few minutes. I cleaned Isobel up and she fell asleep. I manipulated and massaged her right arm, the extent of muscle wasting, especially on the upper arm is dramatic. The nurses will try to get further fluid down her later. I left just before 7pm.

Iona is working her last week before going on maternity leave. She is rather uncomfortable as, when they were in Mothercare, Jon dropped an exercise weight on her foot and broke her toe!

My visit to Isobel today was very brief and I did not stay to feed her tea. She had eaten her breakfast and some yogurt after. She had drunk reasonably well. She had not eaten any lunch. The nurses reported that they had extreme difficulty getting her to take her medication; but succeeded after a long effort.

Isobel was half asleep when I arrived. I talked to her but she was not responsive. She seemed to be comfortable.

I arrived at the Centre at twenty past five. Isobel was asleep when I arrived. She had eaten very little all day, just one pot of balanced supplement and a couple of spoonfuls of another. She had drunk reasonably well so far.

When tea arrived at about half five, Isobel was fairly easy to wake. She ate all of the main course very very slowly. Towards the end she showed signs of tiredness. She had just one mouthful of orange squash. She also ate a pot of strawberry yogurt. While eating the yogurt there were three or four episodes of coughing and spluttering. She fell deeply asleep as soon as she had finished the yogurt. Her arms were not very swollen and she appeared to be comfortable. She was not able to speak. I sat with her for a while before leaving at 8pm.

I went in to see Isobel at 5pm. She had eaten half her breakfast and had two pots of balanced supplement after. She had not eaten lunch. She had drunk fairly well overnight and in the morning.

Isobel was asleep when I arrived. I woke her at once without any problem and began giving her a high energy drink. About a quarter of an hour later tea arrived. Over the course of an hour Isobel ate most of the main course and all the high energy drink. The main course was scrambled egg and liquidised beans - Isobel finished all the egg which she enjoys, even though the crumbs cause some coughing and it gets cold while she was eating it. Some of the beans were left as they was too runny.

Isobel was again very sleepy. She was not able to speak. Her right arm was slightly swollen and I massaged and manipulated it, but it was not nearly as bad as a couple of days ago. Isobel ate a pot of balanced supplement with no problems but then fell soundly asleep. Isobel was comfortable, and this was a good day for her overall. I left at 8pm.

I went in to see Isobel at mid-day. She had eaten a pot of balanced supplement as well as having more to drink in the early hours of the morning. She ate most of her breakfast and another pot of balanced supplement this morning. Isobel was showered this morning without problems. She was asleep when I arrived but woke easily.

Lunch arrived rather late, just after half twelve. Isobel managed to eat all of her first course although it was a rather slow business. She very nearly finished a beaker of high energy juice but fell irrevocably asleep with just two teaspoonfuls left. Isobel was relaxed and comfortable, although there was some coughing and spluttering while eating. Her right arm was much better, not nearly as swollen and no sign of pressure points.

We are now at a stage where Isobel is constantly on the edge of not eating or drinking enough. The eating is not a serious problem, Isobel could miss food entirely for several days without causing any real difficulties. The drinking is usually easier to manage but potentially more serious if she does not drink at all for a couple of days. She is much sleepier, in the sense that she sleeps more deeply. The proportion of the day apparently asleep has probably decreased over the past couple of months, but for much of the time her eyes are open she is unresponsive and not really awake. The sleepyness makes eating and drinking very slow. I left the Centre just before half past two.

Friday

A late posting of Fridays blog, I will be at the Centre again in half an hour.

I went in to see Isobel at 5pm. She was asleep when I arrived and had been very sleepy all day. She had not eaten anything all day apart from a few teaspoonfuls from a pot of balanced supplement. She had drunk a moderate amount.

When tea arrived I woke Isobel and Keith and Liz arrived. Isobel ate slowly, with long pauses between mouthfuls. After a while Keith and Liz left and I continued feeding Isobel until she had eaten three quarters of the main course. She remained half awake and over the course of another hour and a half she drank half a beaker of blackcurrant squash. She was desperately tired and finally fell deeply asleep. A further attempt to feed her was planned for 11pm. I left at 8pm.

I got carried away while painting today and when I checked whether it was half four, found out it had just turned five o'clock, as a result I did not get in to see Isobel until half past five. Isobel was asleep when I arrived. She had eaten her breakfast and a pot of balanced supplement at the same time. She slept through lunch and only had a couple of spoonfuls from a pot of balanced supplement when she woke. She had not drunk much during the day.

Tea arrived a few minutes after I did. Isobel was rather difficult to wake and was very sleepy. She eventually ate all the main course. She was very slow but did not have any particular problems. She was unable to keep awake when trying to drink a glass of high energy drink. When she had drunk about a third of it very slowly I decided she might do better after a rest and let her sleep for an hour and a quarter. Isobel was difficult to awake and again very slow to drink, but she eventually finished all the drink - if she had drunk more earlier in the day I would not have persisted with this drink.

Isobel was unable to speak today. She seemed generally weak and tired, but at the same time relaxed. For some time she has had minor tremors of the left arm and leg, these were more noticeable today. Her right arm, which has been no problem for some weeks was swollen like a balloon again today. There was a small red mark on the skin at the elbow, although she has a pillow underneath the arm - possibly she has rested the arm with the elbow in contact with the wall. The nurse agreed that there was no explanation for the erratic swelling behavior of the arm. I manipulated and massaged the arm for about a quarter of an hour. Isobel went to sleep again and I went home just after 9pm.

Wednesday's blog

I went in to see Isobel at 5pm. She was asleep when I arrived. On Tuesday she had eaten very little after lunchtime, probably because she was tired from the effort she made at lunchtime. She had taken just sufficient drink during the day. It is probably not worth trying too hard to wake her for food at lunchtime if it is going to adversely affect her later. Her natural pattern seems to be to sleep for most of the day and pots of balanced supplement and drinks are available for whenever she wakes. The best times for getting her to eat conventional food are when she is dressed in the morning and at teatime.

Today Isobel had eaten half of her breakfast and a pot of balanced supplement later in the morning. She had slept through lunch. When tea arrived she woke easily. She ate the main course easily and moderately quickly. She tired somewhat as she ate strawberry mousse for dessert but finished it. She drank half a beaker of blackcurrant squash very slowly before falling asleep. She was able to confirm she was comfortable but did not speak apart from this. She seemed relaxed. I sat with her for a while but she showed no sign of waking again; I left at twenty past eight.

Iona went to her first ante-natal class this evening!

As I was in in Orpington this morning, I went in to see Isobel on the way back arriving at mid-day. Isobel was only able to eat a quarter of her porridge for breakfast, but had a pot of balanced supplement later in the morning. Isobel was very soundly asleep when I arrived.

When lunch appeared it was very difficult to wake Isobel. It was almost impossible to get her to take any food at all as her teeth were clenched tightly shut for much of the time. Eventually she managed to eat half of the main course, only on about five occasions did she take a proper mouthful, the remainder was slid between almost closed teeth. A very long time was spent after trying to get her to take drink, she managed a quarter of a beaker over the course of an hour. After this Isobel fell very soundly asleep again and could not be roused.

This lunchtime was typical of many now. This depth of sleep results in her missing many lunches as the staff cannot spend two hours with her (and are probably not prepared to be as forceful as I am). Isobel was again unable to speak today and was very unresponsive generally. She will probably eat better this evening. I left at just after 2pm.

Pat Ball arrived to see Isobel a few minutes after I left. She did not stay long as Isobel was fast asleep.

I went in to see Isobel at five o'clock. Isobel had eaten half her bowl of porridge for breakfast and a pot of balanced supplement after. She could not be woken at lunchtime and had not drunk a lot during the day.

I fed her the main course at tea time. She finished this, but needed a lot of drink to help clear her mouth and coughed a lot, covering me and my clothes in fine fragments of food. Despite these problems the eating was fairly rapid. The main course, a beaker of high energy drink and a pot of yogurt were finished by soon after 7pm; as usual the last part had been slow as Isobel tired. Isobel was not able to speak today but listened with apparent interest as I described current events. I read a long section of her book to her before she fell asleep just before 8pm. I cleaned Isobel up and left just after 8pm.

I went in to see Isobel just before half five. She did not have a good final part of the day yesterday and had virtually nothing to eat or drink after I left at lunchtime, although numerous attempts were made to give her food and drink in the evening. She drank this morning but did not eat any of her breakfast. However she ate two pots of balanced supplement during the morning. She had only six spoonfuls of her lunch. Some of her drinks have been the very high energy drinks that compensate to some extent for her failure to eat much; she had drunk half a beaker of this shortly before I arrived.

She had already eaten half of her tea time yogurt before I arrived, having started on this as it was thought she would find it more acceptable than the main course. She quickly finished the second half. I begun to feed her the main course. At first she ate fairly quickly but soon showed signs of tiredness and slowed down considerably. She took a couple of spoonfuls of drink with the meal, but needed a rest before starting on the second half of the high energy drink. Isobel was very slow and tired and eventually finished the drink shortly before half seven. She fell asleep immediately and slept for an hour, waking of her own accord. I then gave her a second beaker of high energy drink: she drank this in two stages with a twenty minute doze in between. Isobel will be given another drink with her medication in an hour or so.

Taking the two days together, Isobel will just about have drunk enough to get by, but it is not a comfortable position. She was able to say a couple of words today and confirmed that she does not have pain. She was seeing some things clearly, but at other times her eyes wandered independently, very disconcerting. I went on to Iona's at a quarter to ten, Isobel had fallen asleep again.

I went in to see Isobel at mid-day. When I arrived she was being dressed and settled in bed after a shower. She had eaten a bowl of porridge for breakfast. A shower usually exhausts her and is likely to trigger vomiting, but on this occasion although Isobel was fairly tired she seemed relaxed and there was no sign of a tendency to vomit.

I sat and talked to Isobel until lunch arrived at half past twelve. Isobel was not able to speak. Isobel ate three quarters of her meat and three veg before running out of energy. She also drank half a beaker of high energy drink. She showed no response to music on the radio. Although she was tired, Isobel was not fully asleep but was unable to eat or drink any more. I left for my brothers house at about a quarter to two.

I spoke to Jane by 'phone, she said Isobel had apparently been awake when she visited yesterday - she and Derek went in early and Isobel was still being dressed when they arrived. She talked to Isobel, but Isobel was unresponsive. I have no doubt Jane used the right approach; Isobel can seem to be completely unaware of what is going on but she will in fact be hearing what is said,

I went in to see Isobel at a quarter past five. She had not eaten breakfast and had just a couple of spoonfuls of balanced supplement after. She ate a whole pot of balanced supplement later in the morning but did not touch her lunch as she could not be woken.

When I arrived she was asleep but woke easily when tea arrived at half past five. By six o'clock she had eaten all of the main course although it had been very hard work for both of us. It then took over an hour for her to drink three quarters of a beaker of high energy drink before falling asleep. I slipped out to do some shopping....

When I returned Isobel was still asleep. I woke her without difficulty and she drank the last quarter of the high energy drink in about twenty minutes. We then moved onto the yogurt remaining from tea. There is no doubt that Isobel still enjoys yogurt, she always eats it with more enthusiasm than other food. She finished a pot of yogurt in twenty five minutes with obvious pleasure. Isobel tried several times today to speak but I could not make out what she was trying to say - she is I think trying to say complete sentences but is nowhere near forming a word that can be understood. Isobel was able to indicate that she was not in pain. Her eyes were again very odd today. I left at a quarter past ten.

I went in to see Isobel at just after 5pm. The Clements had visited in the morning and Pat Ball in the afternoon, but I have not yet spoken to them. Isobel had eaten nothing and drunk very little today by the time I arrived.

Isobel woke fairly easily when her tea arrived, just a couple of minutes after I arrived. She was unable to speak and at times her eyes did not appear to function. There was a full beaker of high energy drink from earlier left undrunk on her table. I gave some of this drink to Isobel before starting on the main course of scrambled egg and tomatoes. Feeding Isobel today was very slow and difficult, with her teeth clenched tightly shut most of the time. The technique is to wait for a slight relaxation of the jaw muscles and then slip the spoon between the teeth, scraping off the food or drink on the inside of the upper teeth. At first there was considerable coughing and spluttering, but this diminished when the pace of eating slowed even more. After about three quarters of an hour Isobel had eaten half the meal and drunk almost half the drink. We switched to concentrate on the high energy drink which Isobel finished very slowly. She then had a little from another beaker of high energy drink. She then ate a pot of balanced supplement with major problems. Returning to the second beaker of high energy drink Isobel managed to drink a little more before falling sound asleep.

Isobel slept for almost an hour before I woke her and asked her to try and drink some more. Over the course of almost an hour Isobel took only two teaspoons of drink, her teeth being clenched shut almost all of the time. Catherine, the nurse who has a good track record of getting Isobel to drink in the middle of the night, came on shift and said that she had completely failed to get Isobel to drink anything last night. I had planned to get Isobel to finish the high energy drink and eat a yogurt, but she only half drunk the high energy drink and did not start the yogurt. When she fell deeply asleep again I gave up and went home just after 9pm. Isobel has not really drunk enough to get by in the past twenty four hours.

I went in to see Isobel at 5pm. She had a poor start to the day. She did not eat breakfast but was sick after a drink. Later she had part of pot of balanced supplement. At lunch she had only a few spoonfuls of a pot of balanced supplement. She drunk a moderate amount during the day.

Isobel was asleep when I arrived but woke easily. She was again unable to speak. Eating tea was not without problems, there was a moderate amount of coughing, sending a spray of fine particles of food mainly over me. However, not much food was lost and the main course and a glass of high energy drink were consumed much more quickly than in the previous few days. A bowl of yogurt was tackled after a few minutes rest and all eaten within ten minutes. Although Isobel was tired after eating and drinking, this was a much more satisfying performance than for some days.

I read several pages of The Hobbit to Isobel, but stopped when she showed signs of falling asleep. I starting trying to cut her fingernails but switched to filing them down and found this gave satisfactory results with less effort. I was able to do all the fingers on both hands as the claw like gripping had relaxed. Isobel's right arm was swollen for the first time in several weeks and I massaged and manipulated it. Isobel fell soundly asleep afterwards. I came home earlier than usual at twenty to eight.

I had a long chat by telephone with Victoria, the speech and language therapist this afternoon. I gave a description of Isobel's problems, the weakening of swallowing and need for multiple swallows to clear her mouth, resulting in eating being much slower than a few weeks ago. We agreed that the decline in Isobel's eating was what we expected and no input from Victoria at this stage was likely to improve matters. Victoria was of the opinion that all the strategies now being used were the best that could be found. She will check again in a couple of weeks.

I went in to see Isobel at the usual time but was held up by traffic on the A2 slip road and did not get in until almost half past five. June had already been with Isobel for over half an hour, Isobel had been asleep, but occasionally coughing. June had to leave almost at once, a couple of minutes after Isobel's tea arrived. Isobel did not have a good start to the day. She ate only a quarter of her breakfast and could not manage a pot of balanced supplement. She also could not be woken for dinner. Later in the afternoon she ate a pot of balanced supplement. She drank only moderately during the day.

I managed to get Isobel to eat all her main course and drink half a beaker of blackcurrant squash; but it was a desperate struggle. This took two hours altogether and was punctuated by dozens of coughing incidents in which no significant amounts of food were expelled but a fine spray of food and drink constantly hit me. I found out that the coughs were often occurring just after swallows, which I had not noticed before. Isobel had drunk a little of the drink while eating the main course but was incredibly slow while finishing the remainder of the half beaker after finishing eating. The yogurt dessert had been foregone, the intention being to give Isobel a pot of balanced supplement after she had taken a full beaker of drink, but she was completely exhausted and fell asleep after half a beaker. I decided to let her sleep and recover before giving her the second half beaker of squash.

While Isobel was sleeping, Dallas and Mike arrived en route from Ramsgate. We chatted for an hour while Isobel slept, they left just before half nine. As soon as they had gone I woke Isobel, with some difficulty as she was still very tired. However she drank the second half of the beaker of squash more quickly, but as soon as she finished she fell fast asleep again. I abandoned hope of giving her anything more - Edmund will try to give her a pot of balanced supplement later tonight. I went home just after a quarter to ten.

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.

I arrived to see Isobel at 4pm. I had intended to see if she would have a drink well before tea arrived but was intercepted by a nurse who said that she had just finished giving Isobel a very late lunch and she had fallen fast asleep after. Isobel had little to eat or drink earlier in the day and it had not been possible to wake her at the normal lunchtime. Isobel was certainly very soundly asleep, I sat with her and read the book I had brought with me (the biography of Paul Dirac) for an hour.

When tea arrived it was somewhat difficult to wake Isobel. It took about ten minutes before she took the first full mouthful, but thereafter she ate the first course, scrambled eggs and tomatoes, fairly quickly and without problems. Isobel was again rather unresponsive, although slightly better than in the past few days. She did not say anything in reply to conversation. Both her arms looked OK.

After a break of only about five minutes, Isobel ate her yogurt dessert easily and quickly. She also drank a beaker of blackcurrant, but afterwards was very tired and fell asleep before I could start reading to her from The Hobbit. I washed Isobel's face but she slept on. I sat with her until a quarter past seven before coming home. I formed the impression that despite the eating problems and sleepiness that Isobel was a little better than yesterday.

This was a bad day all round, including the lawn mower exploding in the afternoon. I spoke to Rosemary's husband by telephone, she told him that Isobel was sleepy and unresponsive throughout her visit yesterday.

I went in to see Isobel at 5pm. The Speech and Language Therapist, Victoria, was already there. Isobel had eaten little during the day apart from pots of balanced supplement. She had drunk moderately well. I showed Victoria the record of food intake. After a few minutes when tea had not yet appeared, she mentioned that her hired car had to be back at Gravesham Hospital by 6pm! I spoke to Edmond and he got Hayley to produce Isobel's tea within two minutes, Victoria then had five minutes to observe me feeding Isobel before she left - this amounted to two mouthfuls (which was much quicker than yesterday). Victoria expressed the view that her visit had still been useful, apparently she had been working nearby during the afternoon. I said that I felt there were more problems with eating in the last week. I gave her a brief account of the nutritionist's comments last week. It was agreed that she would see Isobel for a full meal next Thursday lunchtime, arriving at 11.50am. This does of course run the risk of not being able to wake Isobel.

After Victoria had left I continued to feed Isobel her main course. She had a number of coughing and spluttering incidents and these seemed to be eased by intercalating mouthfuls of thickened blackcurrant squash between mouthfuls of puréed meat and vegetables. The same procedure was used for dessert of yogurt. I believe part of the problem may be that Isobel has a slight cold again. Eventually the main course, dessert and drink were finished; but Isobel was very tired.

I read a few pages of her book to her but she soon fell fast asleep. I manipulated and massaged her right arm which showed signs of swelling again. For some weeks she has had a slight intermittent tremor of the left arm, this has increased in frequency over the past week and there seems to be a tendency for the left hand to lock into a claw like grip in the same way as the right hand a few months ago. Although Isobel has short sequences of a few bad days followed by a few less bad days, I feel her underlying condition is now significantly worse than a week ago. I sat with Isobel for a short while as she slept, but it seemed unlikely that she would wake again for some time, I left just before half past seven.

I was at the Land Registry this afternoon and did not get in to see Isobel until 7pm. She had been very tired all day and as I entered the Centre the nurse intercepted me to say that she had just left Isobel after a protracted time getting her to take a drink, she had fallen fast asleep and would be too tired to eat or drink anything for a while.

Isobel had eaten only yogurt for breakfast, but had a pot of balanced supplement later. She had eaten only a small part of her lunch but later ate another pot of balanced supplement, the same situation occurred at tea time. Rosemary visited her in the afternoon but I have not yet spoken to her.

Isobel remained fast asleep for over an hour. When she eventually showed signs of sleeping more lightly I woke her. Isobel was very unresponsive, she did not speak and on the few occasions when her eyes opened they stared blankly. As Isobel has taken so little food today I fed her another pot of balanced supplement; this took just over an hour and Isobel fell asleep exhausted afterwards. I washed her face and sat with her for a while, but it was clear she would not wake for some time. The night shift carers will try to get her to take another drink later, but I think they may not succeed. I left at a quarter to ten.

Having been held up by roadworks on the way in, I did not reach the Centre until a quarter past five, just as tea arrived. Isobel was fast asleep. Isobel had been very sleepy all day and difficult to rouse. She had missed breakfast and only eaten a few spoonfuls of her lunch. She had eaten a pot of balanced supplement later in the morning and another one in the afternoon. She had drunk sufficiently during the day. The Balls (Chris's parents) had been in during the afternoon to see Isobel but I have not yet spoken to them.

It took ten minutes before I could get Isobel to open her mouth for food. Her teeth were clenched shut, although she appeared to be trying to open her mouth. She was extremely sleepy, falling deeply asleep while eating and needing reminders to empty her mouth. When her mouth opened, she had no trouble taking food from the spoon; nor did she have trouble swallowing the food, apart from the tendency to fall asleep. Eventually she ate all of her main course, dessert and a beaker of blackcurrant squash, but this process took over an hour and a half and left Isobel exhausted. For the past few weeks it has often taken a little while for Isobel to take the first full mouthful, but after that she has speeded up and eaten continuously. Today it was as if she was starting the meal again every few mouthfuls.

My efforts to talk to Isobel today received no response; she was desperately tired. I sat with her for a little more than an hour, hoping she would wake but she remained very soundly asleep. I had hoped she would eat another pot of balanced supplement tonight, but it looked unlikely that she would wake. I finally gave up and left at 8pm.

I may not get in at the usual time tomorrow to see Isobel as I am in Croydon tomorrow afternoon.

The new Speech and Language Therapist, Victoria, had provisionally indicated she would come in today at tea time to see Isobel eat. She 'phoned this morning to say that she would come in at 4.50pm on Thursday.

I went in to see Isobel a few minutes after 5pm. She was asleep when I arrived. Isobel could not be woken at breakfast time, however later in the morning she woke and ate a pot of balanced supplement. She ate her lunch and another pot of supplement during the afternoon and has drunk well.

Isobel had got part way through a beaker of blackcurrant squash when tea arrived. She ate the main course of scrambled egg and tomatoes quickly and finished the blackcurrant squash. She also ate dessert very quickly and easily. She was not able to make any replies today, but listened as I updated her on events at home. She was rather tired and dozed for a short while. It was a pleasant evening with blackbirds excavating in the leaf litter outside Isobel's window and rabbits grazing on the grass a few yard away, but sadly all of this is lost on Isobel.

I woke Isobel shortly after half past six and she ate a pot of balanced supplement slowly but without problems. As far as I could tell she did not want her book read to her; but she seemed interested for a few minutes when I gave a running commentary on a snooker match on television, although she did not open her eyes for most of the time. Isobel drank a beaker of orange squash very slowly, was obviously tired, and fell soundly asleep after. I left at 7.40pm.

I went in to see Isobel at 5pm. She was soundly asleep when I arrived and had been deeply asleep most of the day. She ate half of her porridge for breakfast but all of a pot of balanced supplement after. She ate the main course of her dinner, but only a few spoonfuls of her dessert as she was falling asleep. Later in the afternoon she ate another pot of balanced supplement. In the brief periods when she was awake she had several drinks.

Late last night she had two more drinks after I had gone home; we are watching her drinking carefully but for much of the time it is no problem, the difficulties arise when she loses fluid through vomiting on days when she eats and drinks little, one day is bearable but a lot of effort must be made the next day to get fluid into her. In the final stages it is likely she will be on a drip for hydration.

Isobel was not difficult to wake. I began giving her a beaker of blackcurrant squash but tea arrived almost at once. Isobel ate the main course without difficulty although she was clearly very tired. She also finished the blackcurrant squash. We talked for a few minutes in order to give her a respite from swallowing. Isobel was not able to make any replies today. I slightly over-thickened the yogurt dessert but it was still very easy for Isobel to eat.

After another break, Isobel tried to have a glass of pineapple juice, but she was very tired and although she finished the juice it took forty minutes to drink. Immediately after she fell very deeply asleep. After washing her face I left at about a quarter past seven. Yesterday the Micra had petrol put into it for the first time since 2008.