Today was not a good day for Isobel.

She ate her breakfast but was sick some time after. She was also sick at lunchtime. She became very soundly asleep as a result of the exertion and could not be roused for tea. She had an anti-vomiting injection administered.

I had intended to reach the Centre before 5pm but an accident (supposedly at the Dartford Tunnel) had caused jams on many roads including the A2. I ended up going via Bexley, Swanley and Farningham, taking an hour and not reaching the Centre until a quarter to six. I found Pat and Den Ball had arrived five minutes before me. They had also had a slow journey but had come over Dartford Heath by a more direct route which I had avoided in the light of previous hold ups there, today it seemed Dartford Heath had not jammed solid. Isobel did not look very good. She was awake but not very responsive, she had a red flush over her arms, shoulders and face. The nurse said that the anti-vomiting injection would not take effect until 6pm, after then Isobel could try a pot of balanced supplement. We talked long after 6pm, with Isobel apparently listening but not able to make any comment. Pat and Den left at half six.

Isobel had very little to drink during the day and had lost fluid when she was sick, so we started with a beaker of blackcurrant squash. Isobel did not have any problem with this and we moved on immediately to a pot of balanced supplement; this did not cause cause her any problem either, but she was tired and fell asleep after.

I let Isobel sleep until 8pm. While she was asleep the appearance of her skin became more normal. I massaged and manipulated her right arm which was not very swollen; Pat and Den had noticed this earlier and commented on how much better it looked. When I tried to wake her, she woke easily and drank a beaker of orange squash. Then Isobel ate another pot of balanced supplement before dozing off again. Although she was tired, she seemed quite happy when awake and made a few replies to questions. I had put a football match on the television as Isobel has enjoyed watching it for the past year or so, but she did not watch in any meaningful sense.

I let Isobel sleep until just after 9pm. I was keen to get her to drink another 200ml beaker of squash before I left, she would probably have another beaker at some time during the night and this would set her up for the next morning despite the difficult day she had endured. She drank another beaker of blackcurrant squash very easily, then fell asleep. I left her propped up in bed as an anti-vomiting measure, the carers had said they would be along to get her ready for the night in a few minutes. I left at twenty to ten.

This morning I had another phone call from Claire, the speech and language therapist. She had phoned yesterday to say that she would no longer be looking after Isobel's swallowing problems. She works for Medway pct and her services are bought in for the Dartford area, now the contract has changed and someone else would take over. We had a long discussion yesterday and she 'phoned back today just to discuss the consistency used for Isobel's squash drinks. Although Isobel has seen her only three or four times, her detailed advice has been very useful.

I went in to see Isobel just after 1pm. A nurse was feeding Isobel a pot of balanced supplement. She had missed lunch as the carer had not been able to wake her. She had eaten most of her breakfast and a pot of balanced supplement this morning. I took over the feeding and Isobel finished the pot off without any problems although still a bit sleepy. I also gave Isobel her paracetemol in thickened water. Meanwhile Iona arrived after finishing work. We sat around and chatted, Isobel seemed to understand the news about Iona's forthcoming daughter. We left at twenty to two for a birthday dinner of pizza (!) at home.

I went back in to the Centre just after five and was surprised to find that Isobel had already finished her tea - the food seems to be arriving earlier than usual today. I took over giving Isobel a beaker of squash - she had fallen asleep when the carer tried to give it to her. While I was giving Isobel the drink, June arrived. We sat around and chatted for a while, but although Isobel was aware of June's presence she was very unresponsive and did not reply to any questions.

After June had left, Isobel slept for a while until I woke her for another drink. Before the drink I read a few pages of her book to her. She drank a beaker of blackcurrant squash without any difficulty. Isobel indicated that she would like some more reading so I did this until I thought she had fallen asleep. I tidied up the room and prepared to leave, but Isobel woke again and wanted some more reading. We have read two full chapters in the last few days. After about ten minutes Isobel fell very soundly asleep and I left the Centre at half past eight.

I went in to see Isobel at mid-day. I had some news to try and prime her with before Iona sees her tomorrow lunchtime. Today was Iona's twenty second birthday and she had her halfway scan early this morning before coming to see us. Her baby is coming along fine and will be a girl.

Isobel was asleep when I arrived. She had only eaten a small part of her breakfast but had eaten a pot of balanced supplement a little later. She had not vomited again. When I arrived a carer was failing to wake her, I took over and succeeded, I think I am a little more robust. I fed Isobel both parts of her lunch. We took it very slowly and she did not have any major difficulties. After lunch we sat and talked. I explained about Iona's baby and Isobel seemed pleased although I did not get any verbal response. Isobel seemed to be comfortable. Isobel slept for about half an hour, I had to wake her in order to get her to take some fluid - she had only had a few sips this morning. I got her to drink a beaker of orange squash without major problems. At difficult times squash is the best drink to try as it is very palatable when thickened and retains its texture for a long time which is essential when Isobel often takes more than half an hour to finish a drink. Two of the four flower buds on the amaryllis had opened. Isobel fell asleep before we could do any reading. I left at a quarter past two.

I returned to the Centre at just after half five having been stuck in traffic on the A2. The carer had just finished feeding her tea, which had been eaten very briskly. Isobel had however fallen asleep soundly before she could be given a drink. I let her sleep for just over half an hour before gradually wakening her. She drank a beaker of squash in less than a quarter of an hour. I told her again about Iona's baby. I then read to her from her book for quite a time before she fell asleep conveniently just at the end of the second chapter. Isobel does want the book read to her and enjoys it, but always falls asleep eventually.

Edmond the nurse said that Dawn the Ellenor palliative care manager had suggested a 2mg reduction in the steroid dose to take effect from next Monday. This was presumably based on the good stability she had until yesterday. On further discussion this would in fact be a 4mg daily reduction from 2 x 8mg daily to 2 x 6mg daily. As matters stand at the moment this might not be a good idea. I said I would see what happened over the next couple of days, then maybe talk to Dawn (I have not seen her for several weeks). I left the Centre at twenty past seven, there was still a little daylight around, the first time it has not been fully dark when I left in the evening.

Isobel did not have a good day today.

She was sick after breakfast and sick again after lunch, she kept little food down from these meals. She was given an anti vomiting injection (I forgot to ask whether this was before or after lunch).

I went in to see her at 5pm, she was asleep when I arrived. She was easy to wake a few minutes later when tea arrived. She begun eating without any difficulty, but when about two thirds of the way through the first course began retching. We paused for a few minutes and I adjusted the bed position so that she was even more upright. I was keen to finish the first course before it got cold, and Isobel indicated she was ready to go on. She finished the final part of the course without too much trouble, although we spaced the mouthfuls out. We agreed to take break before the yogurt dessert and after just a couple of minutes there were another series of retching movements but without any actual vomiting. These continued for about a quarter of an hour until Isobel fell asleep.

I let Isobel sleep for about half an hour and then woke her for dessert. She woke easily and was in good form despite the difficulties of the day. She confirmed emphatically that she did not have any pain and that she would like some of her book read to her after she had finished eating and drinking. She ate the yogurt steadily, with some long pauses after slight isolated retching movements. We took a break of about ten minutes before going on to a drink, during this time I massaged and manipulated her right arm which was again showing signs of swelling up. I moved the amaryllis from the window sill onto the chest of drawers - the heat in the room has encouraged the flower buds to burst forth from their sheath and there is no longer room for the plant behind the curtains. I expect the flowers will open tomorrow or the day after. Isobel drank a beaker of blackcurrant squash very easily without any sign of retching although her swallowing was weaker towards the end. Taking into account the loss of fluid when vomiting she has not drunk enough today, but it seemed too risky to try something else immediately as she was showing signs of tiredness from repeated swallowing. The nurses will try to get more down her later - I often find from the log that she has taken drinks very late in the evening or in the early hours of the morning.

I read a few pages from her book to Isobel, and when I felt confident she would not be sick lowered the bed most of the way to her normal sleeping position. I went on reading and Isobel fell asleep about a quarter of an hour later. I left the Centre at a quarter past eight.

I went in to see Isobel at just after 3pm and bumped into Dallas, Mike and Alice in the car park. They had been in to see Isobel while en-route from Milton Keynes to Ramsgate. Isobel had however been soundly asleep for the whole of their visit.

After chatting for a few minutes I went into the Centre and was surprised to find Isobel awake, a carer was about to try and get her to drink some thickened tea. I took over and Isobel managed to drink a third of it before the strange change of state that occurs in thickened tea took place and it turned runny again. I added some more thickening agent - maize starch - this usually works for a few minutes but this time it just became a runny mess with thicker blobs in it, distinctly unappetising. We switched to blackcurrant squash, which is much more palatable when thickened, as well as being stable. Isobel polished of a beaker of this with no difficulty. I have expressed the view to the carers that tea is hardly worth bothering with as Isobel does not seem to appreciate it more than squash, but I think some of them feel they should try to give her a bit of variety. Isobel had ate all her breakfast and all of her lunch today.

I was intending to read some more from The Hobbit today, but instead Isobel began watching a Harry Potter film on television. Isobel seemed happy today but did not try to respond when asked questions although she was more alert than usual. She was not up to the standard of yesterday. After a while Isobel shut her eyes but was still listening to the film and opened her eyes when I asked if she was following it. After some time she dozed off and I left at a quarter past four.

I returned to the Centre just before 8pm, as I had said I would come back in the evening to see if she wanted to be read to. However, Isobel was soundly asleep. She had eaten all of her tea. I sat with her for a while and then went home at half past eight.

I went in to see Isobel just after 5pm. I took in with me the Amaryllis plant Ellie had given Isobel the Christmas before last, it is coming back into flower again. Tea arrived at the same time and I took over from the carer who was trying to wake Isobel. The carer said that Isobel had been on good form during the day, eating and drinking well.

Isobel woke very easily and was responsive. She ate tea very efficiently and drank a beaker of juice without any sign of tiredness. Her head was tending to fall even more to the left than usual, but this did not impede her eating. After talking for a while, during which time Isobel indicated a desire to have some more of The Hobbit read to her, we moved onto a pot of balanced supplement. Isobel ate this with no problem, although I fussed around adjusting her head position in order to avoid covering the pillow with chocolate. While eating Isobel had her eyes closed as is ofter her habit. When I announced that another spoonful was ready she opened her mouth without looking, showing that she was hearing and understanding. After she had finished I washed her face, then finished arranging the plants in the room.

I read some of her book to her. She clearly enjoyed this but as usual started drifting off to sleep after half a dozen pages. At this moment the carers arrived to prepare Isobel for the night. This takes about ten to fifteen minutes while they clean her, change her pad and put on her nightclothes. It still seems odd not to do this for Isobel. After this Isobel was very soundly asleep. I sat with her for a while then came home just before half seven.

Although not quite as good as yesterday, this was a very good day for Isobel.

I went in to see Isobel today just after 5pm. She was asleep when I arrived and had apparently been unusually sleepy all day. She had eaten only part of her breakfast and lunch but had drank well. possibly this tiredness may be a reaction to yesterday.

Tea arrived shortly after I did. Isobel was easy to wake and ate the first course very well, despite her head falling to the left hand side all the time. The nurses had a problem with this during the day and her head was supported by a combination of rolled up towels and pillows. Isobel also ate her yogurt for dessert without any problems and moved on to drink a beaker of fruit juice. We chatted for a while and watched television. Isobel was able to clearly indicate that she was enjoying her tea, and later that she wanted me to read some off her book to her. She was also pleased to hear that I had been working on getting her car back on the road again.

I read to Isobel from The Hobbit. We have made a very slow start on this book and have only got to page twenty. Isobel enjoys it, but seems to fall asleep quickly. Today we managed about six pages. After she had slept for about twenty minutes I woke her, without any difficulty. She easily ate a pot of balanced supplement and then drank a beaker of blackcurrant squash. She was getting a little tired as she drank the squash and we had a problem with it sliding out of the left hand side of her mouth, so her head had to be frequently realigned, but the squash was finished fairly quickly. This was five lots of eating and drinking in a single visit which cannot often be achieved. We talked for a short while before Isobel fell asleep again. This was a constructive visit that found Isobel more responsive than she has been for a long time. I left for home at five to eight, but after a tour of DIY stores finally got home for dinner at nearly half past nine.

Isobel had a shower first thing this morning. This always tires her out a great deal and she was very soundly asleep when Jane and Derek visited just before 10am. I had suggested to Jane that this might be a good time to find Isobel awake, not realising she was going to have a shower! Jane said that she looked very peaceful, so they did not try to wake her and only stayed for a short period of time. She had eaten all her breakfast.

Isobel ate all her lunch. In the afternoon Pat and Denis Ball dropped into see Isobel. After they had been there for about half an hour Keith and Liz arrived, so she did very well for visitors today. Keith said that Isobel had her eyes open for the whole of their visit and for much of the time seemed to listen to conversation and respond. Keith thought that this was the best condition he had seen Isobel in for some time.

I arrived about twenty minutes after Keith and Liz had left, a few minutes after five o'clock. Isobel's tea had just arrived and the carer was worried he was not able to wake her. I took over the task of feeding her and managed to wake her with just a little difficulty. She ate both courses of her meal without major problems but became rather tired towards the end of dessert. She had a few sips of tea. Isobel gave a few slurred yes/no responses to conversation and we agreed a short break before she took the rest of her drink. Within a few minutes she was very soundly asleep and it was clear she would not finish the tea.

I let Isobel sleep for almost an hour, then tried to wake her to see if she would drink a beaker of blackcurrant squash. She did not wake properly, not opening her mouth fully when taking a couple of part spoonfuls, and I let her sleep for another twenty minutes. She woke briefly and drank half a beaker of squash, falling asleep between mouthfuls and finally falling deeply asleep. She had drunk fairly well earlier in the day, so I gave up trying to get her to drink the rest of the squash. The nurse who gives her the medicines later in the evening will try to get the rest of the squash down her at the same times. I massaged and manipulated Isobel's right arm which still looks OK. I went home at twenty past eight; leaving Isobel fast asleep.

I went in to see Isobel at twenty past five, rather later than intended. She was already being fed the first course of her tea by one of the carers. I took over and she finished the first course fairly briskly. She had eaten both her breakfast and her lunch in full. We moved onto a very large helping of chocolate mousse which was also eaten, although towards the end Isobel tired. Isobel then drank a beaker of thickened tea rather slowly.

We talked for some minutes, Isobel managed a few very unclear yes/no responses. She then suddenly fell very soundly asleep. I sat with her for a while but she showed no sign of waking. I came home at a quarter past seven.

Rosemary went in to see Isobel at mid-day. She observed the carer feed Isobel virtually all of her lunch. She had also eaten breakfast. After lunch Rosemary read to Isobel from her book and believed that although Isobel had her eyes shut she was listening. She did open her eyes again after a while and still had her eyes open when Rosemary left, although staring blankly not focused on anything.

I went in to see Isobel at a quarter past five. Isobel was very soundly asleep when I arrived. Tea arrived shortly after and I woke Isobel without any difficulty. She ate the main course very easily. She became tired while eating dessert and we took a rather long rest during which Isobel dozed but was not fully asleep. She finished the dessert slowly. We chatted for another few minutes when she had finished, Isobel was able able to make a few rather unclear yes/no responses. She confirmed she did not have any pain. She indicated very clearly that after a drink she would like some more of The Hobbit read to her. Isobel drank a beaker of fruit juice moderately easily - there were some problems with the teeth being clenched, this tends to happen when she is tired.

I washed Isobel's face and dealt with the plants. I took the cyclamen home yesterday, it had flowered well despite the tropical conditions in Isobel's room but collapsed after and needed resuscitation in a cooler environment. The miniature daffodils had finished flowering early last week and have been recovering in the porch at home. The hyacinths have finished flowering but seem to like the window sill environment and make a nice splash of green in the room. The Guzmannia, which arrived only a day or so after Isobel, is still thriving. I read to Isobel from The Hobbit. We only got through a couple of pages before Isobel fell asleep. I was happier with Isobels condition today. She was fast asleep when I came home at half past seven.

I went in to see Isobel at five o'clock. She had eaten very little at all yesterday. She was awake when I arrived and within a couple of minutes three nurses and carers had told me how well she had been eating today! She ate all her breakfast, all of the first course of lunch and almost all of her yogurt dessert. She had also drunk well.

Isobel was awake when I arrived. She was able to give a few yes/no responses and confirmed that she was comfortable and not in pain. She was able to focus on objects briefly with her eyes. She was obviously hearing and understanding what was being said to her. I believe she hears and understands a lot, even when she is unable to make a response.

Her tea arrived about a quarter of an hour later. She ate all the first course with no problems even though her head was turned very much to the left, a position that usually causes difficulties. For dessert I mashed up some trifle by hand into a more or less homogenous mush and Isobel ate that also without any problems. She was tired by the effort of eating and fell soundly asleep immediately after. She had taken some thickened grapefruit juice with the meal but most of the beaker remained undrunk.

Isobel slept until after half past seven, then awoke of her own accord. I helped her drink the rest of the grapefruit juice, she was slow but had no especial problems. After a few minutes chatting we moved onto a pot of the balanced supplement which Isobel ate with no problems. Isobel was very tired but remained awake. After a few minutes chatting she became unresponsive but kept her eyes open. This has happened for short periods before and is usually the precursor to sleep. On this occasion Isobel showed no sign of going to sleep but just stared into empty space. I continued talking to her for some time with no response, although I believe she may have heard and understood what I was saying. I finally left at a quarter to nine, Isobel still had her eyes open and I do not like leaving her when her eyes are open.

I went in to the Centre at mid-day and met Iona in the car park. Isobel was asleep when we arrived. Her dinner arrived shortly after. We were unable to wake her and she did not eat any dinner apart from a couple of part spoonfuls of custard that Iona managed to get into her - it was necessary to stimulate a swallowing action by external massage in order to clear this from her mouth.

I spoke to Alex who had tried to feed her breakfast. He said that she had never woken fully and all he had managed to get her to eat was was four teaspoonfuls of porridge. She had managed to drink.

After a further useless attempt we abandoned attempts to feed Isobel. There was a day like this last week and Isobel was better the next day, hopefully tomorrow will be better. Iona and I left at just before half one; visits such as this are very depressing,

Iona went in to see her mother at half past one. Isobel had eaten and drunk fairly well so far; she was asleep when Iona arrived. Iona woke her and got about halfway through a beaker of blackcurrant squash before she fell asleep again. I arrived at two o'clock. We left Isobel to sleep while we waited for the doctor.

When the doctor arrived Isobel was still asleep and remained asleep during our discussions. Edmund, the senior nurse joined us. We all agreed that at the moment Isobel was feeding well enough although feeding took a considerable effort from everybody involved and filled most of Isobel's waking time. We also agreed that the fairly comfortable situation of the past few days was not likely to last for long and that there would be a return to the difficulties of a week ago when for several days she took limited nutrition. I confirmed that we understood the opinion of the consultant at Darenth Valley Hospital that insertion of the stomach tube would cause more discomfort and risk to Isobel than the benefit to be gained.

Dr Sahota said that he could not say how much longer Isobel will live, the progress of the tumour was inexorable but the effects were unpredictable in detail. He was repeatedly pressed on this point by Iona but reiterated that the would make no prediction. After further discussion of the effects of fluid pressure within the brain (no further increase in steroid dose to reduce this is possible) and the proximity of the tumour regrowth in October to vital areas of the brain concerned with maintaining life, it was agreed that while a sudden crisis might occur at any time, it was more likely that Isobel would slip from the sort of half coma she was in now into a full coma. Iona asked if she was correct in thinking that when in a full coma it would probably be several weeks before her mother died, Doctor Sahota confirmed this would be most likely but every tumour followed its own individual course.

Feeding options were discussed. Iona and I agreed that a nasal tube would not have been tolerated by Isobel if she had been able to make her own decision. The doctor said that intravenous feeding could only be done in a hospital environment as it required a doctor on hand all the time. Supply of fluids into the abdominal cavity or by IV drip could be done at the Centre. We agreed that much would depend on Isobel's condition at the time it became essential to make such choices, what was important was to take the decision which offered most to Isobel.

I stressed that we were not saying that life must be extended as far as possible at all costs, we did not want Isobel to be put through discomfort at this stage. I said that I was confident that Isobel was not in pain at the moment. Edmund and the doctor agreed. I said I expected professional judgment to be used to ensure any pain that developed was relieved, if that required a rapid progression to morphine based painkillers so be it. I had seen how terrible pain could be in the final stages of a brain tumour and did not want Isobel to go through that. We were all in agreement on this point.

We were all agreed that for the moment nothing changed, conventional feeding would continue as long as possible and we would then re-evaluate to situation.I confirmed that I had discussed a "do not resuscitate" notice on Isobel's medical file with some family members and we were all happy that the quality of Isobel's life was so poor that this was an appropriate action. After the doctor had left I signed the paperwork for this note.

Iona and I sat with Iona for a while after the doctor had gone. Iona woke Isobel and gave her the second half of the beaker of blackcurrant squash, Isobel was not really fully awake and fell asleep again when the drink was finished. We left just after 4pm.

A meeting with Isobel's doctor was scheduled for today, both the children wanted to be present. I took Euan in at twenty five past one and Iona arrived a few minutes later when she finished work. Isobel was very soundly asleep when we arrived. She had eaten part of her breakfast and had a pot of balanced supplement mid-morning but had missed her lunch completely as the carers had been unable to wake her. We let her sleep on. The children had brought food and drink for themselves and it was like a picnic for the next hour.

Iona had brought in the moving light projector she had bought for Isobel. She set it up and the children admired the display while I said it reminded me of the 1960s. The doctor failed to appear - he is usually in the Centre from about 2pm but reaches Isobel at about 3pm. Eventually, well after 3pm, we got the message that he was not coming today - it had been assumed by the staff that he was on the site but held up in the care home on the other side of the site; a message had been sent to the care home but not passed onto the Centre. The doctor will come tomorrow at the usual time. Isobel woke up and Iona showed her the lights, Isobel seemed to appreciate them. Isobel was able to confirm that she was not in any pain.

As Isobel had not had a drink since she was awake mid-morning I helped her drink a beaker of blackcurrant squash. Iona took Euan home. Isobel then ate a pot of balanced supplement but fell asleep as soon as she had finished it, at about twenty past four. I looked at her right arm, it looked better than it had been for ages, I decided it did not need any massaging today.

Isobel slept deeply until tea arrived at about a quarter past five. She was slow to wake up fully but ate the main course without any major difficulty although she was very slow with the last three mouthfuls and clearly already tired. We started on her yogurt dessert but she fell asleep after a couple of spoonfuls. Isobel did not drink any of her beaker of tea - when thickened it is not an appealing prospect and thickened squash seems much nicer.

After about a quarter of an hour I woke Isobel up. She finished her dessert but was very slowly and had much more difficulty with it than she usually does. I was going to prepare a beaker of orange squash but Isobel fell deeply asleep again. Soon after this Pat Ball and Dennis her husband arrived. We did not wake Isobel - I suspect this would have been difficult. Pat and Den thought Isobel looked better than on their previous two visits, Den thought the colour and texture of her skin had improved. We chatted for about twenty minutes before the staff arrived to change Isobel's pad. After this Pat and Den said goodbye to Isobel who was still half asleep. We had a succession of staff coming to admire the moving lights, everyone seems to like them.

I woke Isobel fully over the course of ten minutes or so. She made very heavy weather of drinking a beaker of orange squash and I did not proceed as I had planned, onto another pot of balanced supplement. Although Isobel has been very tired today, being deeply asleep for much of this long visit, she seemed reasonably alert when awake and was able to respond to a few questions. She was not as good as during the two previous days but was better than she had been before that. I waited about ten minutes to ensure Isobel was stable after the drink and then half lowered the head of her bed; Isobel was already fully asleep. As I prepared to leave, a nurse arrived to feed her the last pot of balanced supplement; after hearing my report she left this for an hour or so. I went home at twenty to eight.

I was rather later than I had hoped going in to see Isobel, having to finish some plastering before leaving home. I arrived at twenty past five. Isobel was asleep when I arrived. She had eaten all her breakfast (Wheetabix) and then had a second breakfast (Porridge) a little later! She had a also eaten all her lunch and two pots of balanced supplement.

Tea arrived after I had been there a few minutes. Isobel woke easily and ate the first course of egg, beans and mashed potato fairly quickly without serious problems. She then ate strawberry mousse for dessert. While eating she was fully awake with her eyes open but did not speak at all. After she had finished eating I manipulated and massaged her right arm which was in good condition.I prepared a thickened blackcurrant drink; but as I did this Isobel fell soundly asleep.

I let Isobel sleep for twenty minutes, then I woke her without difficulty. We talked for a short time while I recounted the events of the past day, but she did not make any reply beyond, I think, agreeing that after a drink and a pot of balanced supplement I would read some more of the Hobbit to her. She drank the beaker of blackcurrant squash without any difficulty. She then ate the pot of balanced supplement rather slowly and was clearly getting tired. By the time I had washed her face after, she had fallen deeply asleep again. I sat with her for a few minutes before adjusting the bed and going home - so Isobel never had any of her book read today. I left the Centre at twenty to eight. Although Isobel did not speak today she seemed as alert as yesterday.

I went in to see Isobel at half past twelve, having been delayed en-route at the dump. Isobel was asleep when I arrived. She had eaten all her breakfast and had a pot of balanced supplement mid-morning. She had drunk well. This was a pleasant contrast to yesterday.

Lunch arrived very late, a few minutes after I got there. It did not take a lot of effort to wake Isobel although she was sleepy at first. I fed her the first course of meat and three veg, she ate slowly but steadily, and finished it completely. For dessert she had just custard, I had declined on her behalf the offer of sponge pudding! After a break of a few minutes during which she remained awake we started on the custard. Isobel was rather slow and clearly tired, but she finished it. After this she drank half of a beaker of fruit juice, getting increasingly slow until she fell asleep.

I let Isobel sleep for about forty minutes, then woke her and she finished off the juice as well as taking her medicine. I massaged and manipulated her right arm which was not at all swollen. We chatted for a bit, Isobel was able to give a few yes or no answers, but not every time one was expected. She did say "yes" once very clearly, the first word for some time that has not been badly slurred. She indicated that she liked the choice of the new book to read. She listened to the first few pages of The Hobbit but then suddenly fell asleep.

After about twenty five minutes I woke Isobel and fed her a pot of balanced supplement - she is supposed to have three a day but does not always manage this. Today she ate it without any problem. It is a thicker consistency than other food and hangs onto the spoon, making it easier to feed to her when she is tired. Her supply of pots is stacked up in the room, all of them are chocolate flavour, this does not seem a problem to Isobel. The only problem is that they are very chocolaty indeed and it ends up all over the lips and surrounding skin. After I had cleaned Isobel up, she fell asleep again.

I discussed the feeding problems with the nurses and saw for the first time a letter from the gastro-enteric consultant at Darenth Valley Hospital regarding the matter of the stomach tube. he set out the pros and cons clearly and suggested that the benefit would be outweighed by the discomfort to Isobel. Coupled with the slight risk from surgery, I don't have any problem with his provisional conclusion that it was not worth proceeding, it is just a pity that I did not see the letter at the time it was received, it would have avoided some confusion. In any case, Isobel's condition now makes anything like this impractical. I left the Centre at a quarter past four.

Isobel was much better today than she has been for some days. She was more awake than usual and kept her eyes open. The main light was on in the room and this suggests that closing her eyes is not a reaction to high light levels. I remain uncertain how much Isobel can see, probably more than you would think looking at her unfocused eyes which do not track objects. Although this was a good day for Isobel, she still sleeps most of the time.

I did not go into see Isobel today as another urgent problem arose. Iona went in the early evening and found her mother asleep. She was not able to wake Isobel, who seemed comfortable.

I will go in before lunch tomorrow.

I took Euan in to see his mother just before mid-day. Iona joined us a few minutes later. Isobel was asleep when we arrived. She had not been sick again since my visit yesterday. She ate and drank little yesterday. Today she had eaten only a small part of her porridge for breakfast but had eaten a pot of balanced supplement later in the morning and had drunk well in the morning.

Before lunch arrived I tried to to wake Isobel but it was very difficult. After a few minutes she was able to take a couple of spoonfuls of blackcurrant squash; then lunch arrived. I fed Isobel the first course of puréed meat and veg; she ate this slowly but without major difficulties, taking some spoonfuls of blackcurrant squash along with it. While she was eating this her medication arrived and the paracetemol was blended with the remains of the blackcurrant squash - this produces an interesting colour change but the result is not unpalatable. After I had given her a little of this, she needed a rest and then Iona took over. Iona got her to drink her dose of steroids as well as the rest of the paracetemol/blackcurrant mixture. After Isobel had a little rest, I fed her about a quarter of her yogurt dessert. She was unable to stay awake enough to safely eat any more. Isobel was unable to appreciate the Mother's Day cards the children had brought, did not speak at all and only opened her eyes a few times for less than a minute. When her eyes were open they did not seem to be focused on anything or to be directed towards any object or sound.

It appears that there has been a breakdown in communication as the medical opinion that Isobel would not not benefit from the stomach tube had not reached me. It was not entirely unexpected that her weakened condition would not offer good prospects for a surgical intervention however minor, but it would have been nice to have been told this directly. I will see the Doctor on Thursday to discuss future feeding options which will be very limited. We left the Centre at a quarter past one.

I went in to the Centre at mid-day. Isobel had a shower this morning and has not been at all good since. She only ate a quarter of her porridge this morning and was sick soon after. She did manage to eat a pot of balanced supplement later. She was very soundly asleep when I arrived.

I had great difficulty waking her for lunch, in fact despite forty five minutes effort she was never fully awake. I got her to eat a quarter of the first course of lunch but it was a real struggle and I gave up when she retched several times. She fell very soundly asleep half a dozen times while I was trying to feed her.

Isobel did not speak at all today. When she was half awake her eyes stared blankly and did not focus on anything. There was some drooling. She was not at all responsive. It may be that she was simply exhausted by the shower. I know that the staff have had periods in the middle of some days when I have not been present when they have not been able to rouse her at all - then when I have come in about half four she has been rested an responded much better. It may that the main problem today was that Isobel was exhausted.

When I gave up trying to feed her Isobel fell very deeply asleep. I went home at a quarter past one.

I went in to see Isobel just after five o'clock. She was asleep when I arrived but woke up of her own accord a couple of minutes later when I was watering the plants. She was able to say "yes" and "no" in answer to questions, confirming that she was not in pain and would like a drink. She had eaten breakfast but missed lunch as she could not be roused from sleep. She drank most of a beaker of blackcurrant squash before tea arrived.

Isobel ate the first course, meat and two veg, without any difficulty. She then drank three quarters of a beaker of thickened tea. The last part of the tea was abandoned as it underwent the thinning process that seems to happen to thickened tea as it cools - it becomes difficult for Isobel to drink and has more chance of being misdirected down her windpipe. Instead Isobel finished off the blackcurrant squash and started the yogurt dessert but had only eaten a few spoonfuls when she fell asleep.

About twenty minutes later she showed signs of only dozing lightly so I woke her and she finished the yogurt. I told Isobel that I had heard from her old school friend Viv that she would be seeing two other school friends, Sue Strong (née Noot) and Pat Perkins on her way back from a weeks holiday in Cornwall. She indicated that she understood this but was very sleepy and fell asleep again.

Because she had been so soundly asleep earlier, Isobel had only had one pot of balanced supplement with breakfast, missing the one she should have in the middle of the day in line with the new regime to counter supposed weight loss. I let her sleep on till after half seven and then woke her and fed her a pot of chocolate flavoured supplement. I must admit that the texture and consistency makes this very easy to feed to her. When she had finished this she drank a beaker of orange squash. I massaged and manipulated her right arm, which was not very swollen but had slight reddening where it had been in the same position for a long time. By this time Isobel was tired again, but her final medication of the day arrived and I supported her head while the nurse gave her the medication. Isobel fell asleep almost immediately after. I sat with her until twenty to nine and then came home. This was another visit during which virtually all of Isobel's waking time was spent trying to get food, drink and medicine into her.

I was rather late going into the Centre as I stopped off to see Iona at the Nursery, I did not get to the Centre until 5.30pm. Isobel was fast asleep but her tea had just been delivered and the young carer was seeking assistance to wake Isobel. She woke instantly for me.

Isobel ate the first course, eggs and tomatoes, steadily without any problems. She ate the second course, yogurt, fairly easily. We were part way through a beaker of fruit juice when a nurse arrived with some surprising news.

Isobel had had monthly weighing today and was found to have lost 5kg. This is surprising as her clothes have been noticed to be tighter on her and a couple of weeks ago I brought in some larger clothes to counteract this problem. On the one hand there is the energy demanded by the tumour for growth which if all other factors were equal would reduce the energy from meals available for normal body maintenance, on the other hand the increased steroid dose is expected to cause some bloating. Isobel certainly looks larger in the body since Christmas. She was examined by the doctor this afternoon and he decided the pots of balanced supplement should be eaten more regularly at the rate of three pots a day in addition to the normal meals.

I must say I found the idea that Isobel had lost significant weight a surprise. It is not that weight loss itself would be unexpected, just that her appetite and appearance did not suggest there was any possibility of weight loss, rather the reverse. Anyway, Isobel finished the juice and ate a pot of chocolate flavoured balanced supplement very well. She seemed a little better than usual after and while we talked she was able to make a few one word replies.

Isobel fell asleep at about ten to seven after the nurses had changed her for the night. I sat with her for a while until the last medication was brought round, I helped her drink this. Over today as a whole she has drunk a very impressive amount of liquid - there have been a few days when we have struggled to get an acceptable amount into her. I massaged and manipulated her right arm which is still in good condition, not very swollen at all. We talked until Isobel fell asleep again. I left at twenty past eight.

I went in to see Isobel at 5pm. She was asleep when I arrived. She had only eaten part of her porridge for breakfast but had also had a pot of balanced supplement. She had finished one course and partly finished the other for lunch.

Deciding to alter the usual pattern I woke her fairly easily and gave her a beaker of blackcurrant squash to drink before tea. This was finished easily, before tea arrived at twenty past five. Isobel ate the first course, fish and tomatoes, fairly briskly but was tired by the end of it. She took a considerable time to drink three quarters of a beaker of tea - she did not finish it as she was falling asleep. A bowl of jelly and cream appeared as dessert, I sent this back as jelly is forbidden owing to the risk of melting to an uncontrollable liquid within the mouth; it was replaced by yogurt but eating this was postponed until later.

I let Isobel sleep on until just before seven o'clock. It took a little time to fully wake her. It took her a long time to eat the yogurt although she speeded up towards the end. We talked for a bit and for the first time in several days she gave yes or no responses to some questions, although the words were very slurred. I was pleased that she indicated satisfaction at the Mothers Day card I had selected on her behalf to send to her mother. I must admit that the loss of two way conversation for several days has been very depressing. Isobel was only able to answer a few questions and after just listened to me with no response. She fell soundly asleep just before eight o'clock. I sat with her for a while, gradually lowering the bed to a nearly flat position - this cannot be done quickly now as there is a risk of recently consumed food or drink being vomited back. I left at half past eight.

Yesterday the usual road home was closed by "a terrible accident" that had taken place a few minutes earlier; about a mile of road was still closed tonight as the crash, in which a car driver died when he hit a lorry, had destroyed a length of road surface.

I went in to the Centre at 11am and met the speech and language therapist Claire and her student Amy. I outlined the events of the past week and mentioned that although Isobel was continuing to swallow that the act of swallowing had become less easy to observe and seemed to be weaker. I described the difficulties at the end of last week and the improvement over the weekend. Isobel was awake and a nurse was part way through giving her the main batch of daily medicines. We moved into Isobel's room and observed the problems the nurse was having. This process took the best part of half and hour and Isobel seemed, not surprisingly rather tired afterwards. After I had cleaned her up, Isobel dozed lightly while I arranged for her lunch to be accelerated so that we could use it to check her swallowing.

Isobel was more or less awake when the food arrived at ten to twelve. I fed her the main course while Claire felt her throat and listened with a stethoscope. Isobel ate the main course with few problems, although she was clearly rather tired. Although the eating went fairly smoothly, the first course took half an hour to consume. Claire confirmed that the act of swallowing was significantly weaker. She was satisfied that Isobel retained an awareness of what was going on in her mouth, she could feel when she had food in her mouth and was sensitive to food tickling the back of her throat and would respond with a cough. Today Isobel showed an ability to continue eating and swallowing when her her head fell somewhat to the left, usually this requires the head to be manually realigned to avoid either food falling out of the left hand side of the mouth or teeth clenching preventing food being taken into the mouth - I pointed out this was unusual. For the moment Claire is happy with the established regime, although this could deteriorate at any time, in which case she cvan be contacted by phone. It was agreed that it was not very good for Isobel to spend most of her waking time being fed. Neither of us have heard any more about the stomach tube.

After Claire and Amy had left just before one o'clock, Isobel needed a rest of over half an hour, during which she slept, before she could tackle the yogurt dessert. At first she was very slow eating this but then speeded up and finished it without major problems. She needed a further short sleep before she drank the beaker of juice that had accompanied lunch. I manipulated and massaged her right arm which continues to cause less problems and is not significantly swollen.

Isobel was still awake so I read the end of her book to her again, as she had fallen asleep on the previous occasion. Once again she fell asleep, just as I reached the end. I sat with her for a few minutes, checking that returning the bed to a nearly flat position had caused no problems, then left at about twenty to three. Once again Isobel did not say a single word.

I went in to see Isobel at noon. She was asleep when I arrived but awoke fairly easily when her dinner arrived a few minutes later. She had eaten her breakfast and drunk well during the morning.

I was able to feed Isobel her main course and dessert fairly easily and quickly but she fell asleep immediately after. I did not immediately wake her for a drink as she had her medication in the middle of the meal along with 150ml of water.

I woke Isobel; once again fairly easily; at a quarter past one. She took a little while to become fully awake but then drank a beaker of fruit juice without any difficulty. I manipulated her right arm and massaged it. The swelling is no well controlled. Isobel quickly fell asleep again but appeared to be comfortable. She did not speak a single word during this visit. I left at a quarter to two.

Today was Euans twenty seventh birthday. Iona had finished work in the early afternoon, having worked through her lunch hour, she picked up some steak on the way to our house and Euan cooked his own birthday dinner of steak, roast potatoes, peas and beans: it was delicious. Iona stayed until just after 9pm.

Tomorrow the speech and language therapist will come into the centre at 11am in the hope of observing Isobel eat.

Keith and Liz came to see Isobel at 1.15pm. She had already eaten her lunch and fallen asleep. They woke her easily and for several minutes she was awake and listened to them but did not speak; then she fell asleep again.

I did not arrive at the Centre today until 5.40pm as I had been teaching in Petts Wood. The carer had already helped her to eat all of the main course of tea and was just starting dessert; I took over the feeding. Isobel ate as easily as yesterday, but fell asleep as soon as she finished eating. Checking the fluid balance record I saw that she had drunk well today and did not need to be awoken straight away for a drink.

I let her sleep on until a quarter past seven then woke her. She drank a beaker of blackcurrant squash fairly easily once she had fully woken up. We spread the drinking over some time as I talked to her. Today Isobel did not say any words in reply. Eventually she drifted off to sleep again. I manipulated and massaged her right arm: she did not wake. I sat with her for a while and then went home at 8.20pm.

I went in to see Isobel at 4pm. She had eaten breakfast and most of her lunch. She was fast asleep. I did not try to wake her but after sorting out the plants I went to see Iona. We sorted out some financial matters and took her dog for a walk at Greenhithe.

I returned to the Centre at ten past five, Isobel was still asleep. I woke her easily when her tea arrived and she ate the main course and a pot of yogurt very easily. Then she drank a beaker of blackcurrant squash. Isobel's eating and drinking was quick and efficient, much better than it has been earlier this week. After she had finished eating we sat and talked. Her speech was again restricted to a few single word responses. Despite seeming much more alert during the meal, she quickly fell asleep once it was finished and we started talking. I think the effort of eating makes her very tired physically. While she was asleep I flexed and massaged her right arm, which seemed a little better today, there does not seem to be any pattern to its variation.

I woke Isobel up at about a quarter past seven. Soon after I helped her to drink a beaker of orange squash. This proved a lot more difficult that the earlier eating and drinking and took a long time, probably because Isobel was tired. I read to Isobel from her book, there were only a few pages left and we just managed to finish them before Isobel fell asleep. I stayed a little longer to see if Isobel was going to wake, but she was very soundly asleep. I left ay twenty past eight.

Jane and Derek had said they would go in today to see Isobel; I told them not to stay if she was solidly asleep and this was obviously the case as they made a flying visit for a few minutes this afternoon. I went in to see Isobel a couple of minutes after 5pm. She had eaten breakfast and most of her lunch.

Isobel was asleep when I arrived and I busied myself with a bit of housekeeping in the room until Isobel's tea arrived, a bit later than usual. She woke easily as I massaged and manipulated her right arm for a few minutes. Isobel seemed less tired than she has been for most of the past week. She ate the main, puréed, course without any problems. I had declined the offer of tea on her behalf, instead Isobel had the first half of a beaker of blackcurrant squash. Then Isobel ate a bowl of yogurt as dessert and finished off the blackcurrant squash. Although the whole meal had taken more than forty minutes to consume, it was handled easier than any meal for a while. The replacement of tea with squash was a good move.

After tea we watched television for a while but Isobel fell asleep at a quarter to seven and slept until almost half seven. When she showed signs of being only lightly asleep I woke her and she drank a beaker of orange squash without any problems. I did a bit more massaging and manipulating of her arm. I read some of her book to her, we passed page 400, there are only a few pages left. We have done little reading in the past few days as she has been eating or drinking all the time she is awake. I stopped reading when Isobel fell asleep, I sat with her until I went home at a quarter to nine. Isobel only managed a few unclear words of speech today but was generally much more alert than for the past few days.

I went in to see Isobel at 5pm. The observation on Tuesday by the speech and language therapist apparently fell flat, immediately after I left they were not able to wake Isobel and she did not therefore demonstrate any swallowing. Nothing has been heard regarding the stomach tube. Today Isobel has eaten breakfast and lunch as well as a pot of the balanced supplement. I don't think there is any risk of her not eating enough even if she misses the odd meal or two - she is lying in bed all day.

When I arrived Isobel was asleep but she woke easily when tea arrived. Tonight Isobel was able to say "yes" and "no" rather unclearly but no other speech. She confirmed she was not in any pain. Isobel ate the main course without undue problems; part way through Jacquie appeared, she is back from the Isle of Wight for a month. After last nights saga with thickened tea I had decided that struggling with rather unappetising thickened tea was not worthwhile, better to give what could be consumed easily and make up the fluid volume with squash later. Today Isobel managed only 50ml of tea. There is a particular problem with tea, it loses thickness as it cools and the addition of further thickener only works for a short period of time. After giving up on the tea, Isobel ate a bowl of yogurt with no major problems, although she was on the verge of falling asleep for much of the time. At the end of the meal she fell soundly asleep.

When the carers arrived at half seven to change Isobel's pad and get her ready for the night, Jacquie and I went down to the Chequers pub at the end of the drive for a drink. When we returned I massaged and manipulated Isobel's right arm, the hand was more swollen than usual. I woke Isobel and began to give her a drink of thickened blackcurrant squash. Part way through this the nurse came to give Isobel her last medication. All medications (except paracetemol) are now in liquid form and tonight were squirted into her mouth. The paracetemol was dissolved in the blackcurrent squash, producing an interesting colour change to a rich aubergine colour. Isobel had no great difficulty with the blackcurrant, apart from being very tired and starting to fall asleep on several occassions. After finishing the drink Isobel soon fell asleep. Jacquie commented on the great change in Isobel's condition since she had last seen her. I feel certain that the beneficial effect of the increased steroid dose has only deferred a further decline in her condition by a couple of weeks. I came home at 8.45pm.

I went in to see Isobel at a quarter past five. She was awake and a nurse was feeding her, she was just finishing the first course and had not had any problems eating although she seemed to be showing the first signs of tiredness in swallowing. She had eaten breakfast but had missed lunch as she was soundly asleep. I took over feeding and Isobel ate her afters of strawberry mousse fairly quickly without and great problems. The same could not be said of her grapefruit drink which posed problems from the start and required two long recovery breaks during which Isobel fell asleep. When she had finished the grapefruit drink she fell asleep for almost an hour. While she was asleep I manipulated and massaged her right arm, this did not cause her to wake.

It had been planned to feed her one of the pots of balanced supplement as well as part of her tea, but this was clearly impossible. The fluid intake record showed that Isobel had not drunk much during the day as she had been sleeping most of the time. As soon as Isobel showed signs of sleeping more lightly I woke her and helped her to start drinking a beaker of tea.

Like all Isobel's drinks now, this is thickened to the consistency of custard and fed to her on a spoon. Isobel had difficulty coping with the tea, tending to either close her mouth and clench her teeth on the spoon or keep her teeth clenched all the time. These problems occurred before the steroid dose was increased and it will be depressing if we have come back to the same point so soon. After about ten minutes I switched to the pot of balanced supplement, this has just the right consistency to hang on the spoon and Isobel ate half of it in about ten minutes. We then went back to the tea and continued making very slow progress, by the time Isobel had drunk three quarters of the beaker (150ml) the tea was cold. She then finished the second half of the pot of supplement rather slowly.

As soon as Isobel had finished the supplement, her evening medication arrived. All her medicine is now in liquid form apart from paracetemol. She drank the tiny beaker without problem. The paracetemol is dissolved in a beaker of water and thickened. It took over half an hour for her to drink the whole beaker. She fell asleep several times during this process. When she finished, she fell very deeply asleep.

During my visit, all of the time Isobel was awake was spent trying to get her to take food or drink. I don't think this can be much fun for her. She did not speak at all to me today, a nurse said she spoke "yes" and "no" a couple of times this morning. I did not manage to contact Claire, the speech and language therapist, by 'phone today, I will try again tomorrow. I went home at 9pm.

Plans for the day were altered when I had to collect Iona from her house after she had worked the morning, in order to take her to Darenth Valley Hospital A & E. On the way over to Iona I called in at the Centre for just a few minutes at half past twelve to see Isobel, as it was possible I would be tied up for the rest of the day and not be able to come in and feed her tea as usual.

When I arrived Isobel was asleep. She had eaten breakfast and drunk well early in the morning. I had only been there for a minute when Claire, the speech and language therapist, arrived. She had arranged this call apparently at short notice and had asked the Centre staff to try and contact me, but they had not succeeded in doing so. I explained why I had only dropped in for a few minutes and could not extend my stay. I gave Claire a brief account of how Isobel had managed food and drink with me for the past week and expressed the view that feeding had become more difficult in the past couple of days. Claire said that she had particularly wanted to see the Centre staff feeding Isobel. At this point. At this moment a staff member I had not seen before arrived with Isobel's lunch. At the same time a nurse wheeled up the medicine trolley. After a brief conversation with Claire, the nurse replaced the lunch bearer (who was apparently agency staff) with one of the regular feeders. Claire pointed out that the meal just delivered included ice cream for dessert! I confirmed this was not expected, had not happened since her previous call as far as I knew and was contrary to the feeding rules stuck on the wall. Isobel had not been having either ice cream or jelly; her usual dessert was yogurt or plain custard. I arranged to get the results of today's observation from Claire by 'phone either later this afternoon or tomorrow. Isobel was asleep throughout this brief ten minute visit.

I spent five hours with Iona in A & E; she has a problem with the ligaments at the front of the pelvic girdle but it is not serious, just very painful. I did not get back to the Centre on Tuesday.

I went in to see Isobel just after 5pm. She was asleep when I arrived. She had eaten breakfast and drunk well even though asleep for most of the day. She had only eaten a quarter of her lunch. I massaged and manipulated her right arm, this was in the same condition as yesterday; Isobel did not wake up while I was doing this.

When tea arrived, I woke Isobel easily and quickly. She ate the first course fairly quickly and without any difficulty although she was showing signs of tiredness by the end. Then she started on a beaker of tea and bowl of yogurt. There were difficulties from the start. It was clear Isobel was very tired and she fell asleep several times between mouthfuls. She was also having problems keeping her head in a suitable position despite support from pillows. She did finish the tea, and also eventually the yogurt, but the whole meal took an hour for her to eat. After she had finished eating she fell very soundly asleep.

During this visit I spoke to Isobel a lot but did not get a single word in reply. This is very depressing. The nurses confirmed Isobel does not speak to them. I came home ay twenty five past seven.