Tuesday continued the difficult pattern of Monday, although Isobel did dress, breakfast and go to the hospice. She continues to refuse to take medicine. The possible results of this action were explained by hospice staff.
At about 4pm the District Nurse called to assess Isobel. Isobel's language was not too extreme although there was some shouting.
Isobel ate a normal dinner but slept for most of the evening, still refuse to take any medicine. Euan believes he saw another fit this afternoon.

Monday was not a good day for Isobel. It took until 3am to convince her to take her Sunday night medication. At about 7am she said that she did not want to eat, drink, wash, dress, clean her teeth, take her morning medicine or go as arranged to the hospice. Hours of discussion did not produce any agreement although she did begin to drink at about noon. (Medical support was given to us during this period). In the early afternoon a small fit involving trembling for no more than ten seconds but no loss off consciousness was seen.
Isobel's friend June arrived at about half two, and Isobel ate a couple of the biscuits she brought. Isobel and June went for a short walk and called in on Ursula. Ursula's husband drove them home. A little later June drove Isobel down to Hall Place where she had another short walk. Isobel's language was much calmer when June was present.
In the evening Isobel ate a large meal of cheese and onion flan, boiled potatoes and peas. Isobel refused to take her evening medicine. She had a good nights sleep with no disturbance.

Another morning dominated by difficulty convincing Isobel to take her medication, this seems to be an increasing problem. Also difficulties again with bathing, this is becoming almost normal now.
We had just finished lunch when Dallas and Mike arrived from Milton Keynes. They and Iona took Isobel out for a cream tea at Hall Place, afterwards going on to the Red House (closed!) and then Danson Park. They returned just after 6pm.
Isobel had a large curry for dinner and then another bath before settling down for the night at about 10pm.
Mike and Dallas noticed significant changes since our visit to Milton Keynes about a month ago.

The worst day ever today. Isobel slept in the spare bedroom as our room was unusable. I had a few hours sleep on cushions on the landing floor after hours of washing and cleaning.
In the morning Isobel had breakfast but refused to bath, take her medicine or wear pants. She was in a very bad temper for more than three hours until the problems were resolved with Euan's help.
I took Isobel in the wheelchair over to my brother's house to watch the rugby. She enjoyed some coffee cake but midway through the second half of the game said she was tired and wanted to go home. Liz took her back in the car and settled her down with Euan. I returned on foot later and cleaned up the carpet in the lobby outside the kitchen and a cushion from Euan's sofa as Isobel had removed her pants without Euan noticing.
At about half past five there was a thunderstorm with spectacular hail. The hail was very heavy and the stones were the size of marbles, the roads and gardens were white as if it had snowed. Hailstones were banked up four inches deep at the front door. A few minutes after it stopped I went to the shops and got caught in a small scale repeat of the hailstorm. Sainbury's was shut as a result of flooding and the Shopping Centre had been evacuated. Isobel had meat pie, boiled potatoes and baked beans for tea. Afterwards Isobel was very tired and had a quiet evening.

For the avoidance of confusion, the previous posting which appears as made on Friday was actually made at 1.12am on Saturday morning.

This is the continuation of the account of yesterdays meeting with Dr Sadler at Maidstone Hospital.

In answer to Iona's question, Dr Sadler said that she attributed the decrease in active tumour to continued cancer cell death after radiotherapy and chemotherapy last year. On the basis of the scan alone, she would not have expected any significant worsening of symptoms. Dr Sadler wondered whether small scale fitting was occurring and checked the current phenytoin dose. I confirmed that there had been nothing observed to suggest fitting. After further discussion it was agreed that there did not seem to be an obvious explanation for the recent changes in intensity of symptoms. Dr Sadler suspected something other than the effect of the tumour was playing a part and will arrange for one of her colleagues, a neurologist, to take a look at Isobel (the appointment will be notified by post). Before leaving we arranged the next oncology appointment for the 29th September (at 9-30 am, that will be a challenge!); we will come back for blood tests next week, probably on Wednesday and fit them in before the neurological psysiotherapy appointment at Queen Mary's at 2-30pm. This meeting had a result none of us expected and it does not help at all with planning for the weeks ahead. There is no doubt about the results of the scans, I looked at them closely and checked that they were labelled with Isobel's name. Maybe I was tired, but it was difficult to see continuity between the March and June scans.

We only stopped for a few minutes at Iona's house on the way back. For dinner Isobel had cheese and bacon flan. Isobel was very tired and lay down on the bed while I was at the shops. The end of the evening was dominated by bed cleaning and washing; Isobel slept in the spare back bedroom tonight.

Today, the 26th of June, had been awaited for some time, as we will learn the results of the latest MRI scan when we see Doctor Sadler at Maidstone Hospital this afternoon.

Morning preparations went smoothly and Isobel was taken to visit her friend Jane at about half ten. She was collected at noon and we had lunch at home before going to pick up Iona.

We only stayed a few minutes at Iona's house and then left for Maidstone Hospital. The roads were clear and we arrived early. The wheelchair was used to transpor Isobel into the hospital, on previous visits she has walked. There were very few patients as a large scale training exercise was underway and parts of the buildings and grounds were cordoned off. Dr Sadler asked Isobel to explain how things were going. Isobel only managed one or two coherent sentences before her speech became completely incoherent. At previous meetings Isobel has made a great effort to speak carefully and I think she has conveyed the impression of having less language difficulties than she actually has had. On this occasion it was clear that she was not able to describe in understandable terms most matters relating to her illness.

Iona and I described the changes in the past couple of months affecting mobility, balance, incontinence, speech and manual dexterity. It was agreed that part of these were certainly caused by the muscle wasting effects of long term steroid use, this may completely account for the manual dexterity problems and partly account for balance and mobility problems. We stressed that the rate of change seemed to be greater in the past few weeks.

Dr Sadler said that she would not have been surprised by these changes had she not examined the latest scan results. The scan showed very good progress, with the area of active tumour very greatly reduced in size. Examination of the scans showed that (after gadolinium enhancement) the part of the ring shaped tumour margin that had previously been most active (towards the front of the brain)showed almost no bright active areas. There was a small active area towards the rear, but it was much smaller than the previously active areas.

This account continues after midnight....

Thursday morning started well, it was to be Isobel's first Thursday session at the hospice. Isobel usually has breakfast and a cup of tea in bed before taking her tablets and bathing. However today there was a mini disaster as the bowl of cereal was spilt into the bed, soaking the sheets and mattress protector in milk. I think we will need a second mattress protector as we have only one and it is a thick and very comfortable item that takes absolutely ages to dry after washing. Despite this we arrived at the hospice by 10am, finding that Valerie, the grandmother of one of Euan's school friends was also at this session. On the way home I delivered a third skip of books to Erith Hospital, then got the washing started before going to Iona's house. I weeded the front 'garden'; cleared a lot of rubbish from the back garden; cut up most of the old shed and removed the old washing line. This was very dirty and dusty work on a hot day, the car was crammed with rubbish that was dropped off at the dump on the way to pick up Isobel from the hospice. Isobel had enjoyed the session, I gather they played bingo but this time she did not win as she did a couple of weeks ago. At about 4pm, while I was taking some more bags of books to the Ellenor trust shop, Isobel had a slight fall up the couple of stairs from the first landing to the main landing. Euan was with her at the time and no harm was done.
At 5pm Terri and Toni from work dropped in for tea/coffee biscuits and a chat; Iona also came over. They stayed for an hour or so. Then Isobel had fish and chips for tea and ginger pudding afterwards. The tedious chore of finishing drying the mattress protector delayed bedtime.

Wednesday morning went smoothly and Isobel seemed to have a little better balance.
Iona came over at about 11am and Sarah, the Ellenor nurse, arrived at 11.30 for a review before the consultants meeting on Friday. The four of us (Isobel, Iona, Sarah and Ian)had an in depth discussion into all aspects of Isobel's care. Blood sugar level was 5.4; the first time it has been checked for over a month and we will do it every couple of weeks in the future. It was agreed that I would get in touch again with Catherine Howard (now at Queen Elizabeth Hospital) for incontinence advice; meanwhile Sarah would contact the District Nurse with a view to arranging a commode - although a commode is not needed at the moment, it will be at some time in the future and changes in Isobels condition have become more sudden in the past couple of months. Stair climbing is still not too difficult under supervision, it may be that another stair-rail is needed at some time in the future. We agreed that at the moment no other equipment of modifications were needed. The eventual need for a hospital type bed was discussed, but we felt that planning for this and other aspects would be better done after we learn the results of the last scan.
After Sarah had left, Isobel and Iona went to Iona's house and dined on roast chicken and rice. I delivered another skip of books to Erith Hospital and four bags of books to various charity shops. The Ellenor Trust shop have said they can take as mnany as we throw out (they get the better condition books and Erith Hospital get the tatty ones).
Isobel was delivered home at about half past five and despite her earlier meal, dined on Chiken Kiev, chips and peas.
At 7pm Pam and Sue from work came and spent about a hour and a half chatting to Isobel. Isobel finished the last slice of the cream cake Liz brought yesterday - she had another two slices late last night - her appetite remains good.

Having had a rather disrupted nights sleep, Isobel had done little more than have tea and breakfast when Iona arrived just after half eight. Iona prepared Isobel for the hospice in record time and for once we delivered Isobel there early, just before 10am. Afterwards we spent two hours catching up on paperwork before Sue Locke (psychological nurse)arrived at noon. We discussed the difficulties that had arisen last week in respect of Isobel's non co-operation in dealing with incontinence and bathing. We agreed that a commode would very likely be needed in the near future, this will be arranged through the district nurse. Iona is off work at the moment and we agreed this had a beneficial effect all round. We agreed a switch from bathing to showering would make life easier and now that my back has healed the tiling of the shower cubicle could be completed. Once I have cut out the remaining concrete Jon will lay the tiles, possibly on Saturday. Other planning would wait until after the consultants meeting on Friday when we should have a better idea of timescales.
Iona and I went to collect Isobel, calling at Erith Hospital to deliver a large skip load of books for their stall. I had a chat with Steve and other staff at the hospice. They had noticed a significant deterioration in Isobel's mobility and also more problems with language.
When we got home at about half three, Isobel was rather tired. Liz (Keith's wife) called in straight from school almost immediately, bringing a cream sponge that Isobel managed to eat two slices of. As tonight was my last teaching session of this academic year, Euan cooked Isobel's dinner and she relaxed for the rest of the evening.

Monday was an experimental day with the children looking after Isobel while I went to Buckinghamshire for the burial of my old friend Paul. This was also the first Monday day Isobel attended the Cottage Hospice. In principle she can now go three times a week on Monday, Tuesday and Thursday.
Although we got started early, Isobel had not had her bath when Iona arrived at 9am. She took over Isobel's preparation while I did the shopping then left for Bucks. Iona dropped Isobel off at the hospice just before 11am and was able to see Jon at home on his day off for a couple of hours. Iona and Euan collected Isobel from the hospice just before 3pm.
I got home about 6pm and we all dined on pizzas for a change. Isobel (and I) were very tired in the evening but she perked up later and demanded breakfast at 2am, but settled for coffee and biscuits. One new problem that has become apparent over the past couple of days is difficulty in sitting up, it is not clear if this is another manifestation of muscle wasting owing the the long term steroid use.

Saturday was a very long day, and by the time Isobel was settled for the night it was after midnoght so this entry has been written on Sunday. We rose early and Isobel underwent the weekly task she hates most, taking the Alendronic Acid medication which is part of her anti-osteoporosis treatment. This has to be taken with water only on an empty stomach and followed by keeping a vertical posture of the upper body for at least half and hour before eating or drinking anything else. We then had breakfast at half past seven; afterwards Isobel had a bath. At moment we are still managing baths, sometimes with difficulty, but will probably move within a few weeks to using showers only. We had our usual lunch of French bread, cheese, ham and salad at noon.
After lunch we went to my brother Keith's house to watch the Lions play the Springboks. We went on foot, with me pushing the empty wheelchair and supporting Isobel with the other arm. After about two hundred yards Isobel was hardly able to walk, but refused the wheelchair and struggled on for another hundred and fifty yards although needing much of her body weight supported. Her desire to be independant is understandable but sometimes goes well beyond the limits of common sense. At Keith's house we ate chocolate swiss roll and drank beer - even Isobel had a glass and a half of Bass! We negotiated a split of the homeward transport, Isobel walked the first hundred yards, then we did a quarter of a mile or so in the wheelchair, then Isobel walked the last few yards down our road.
When we arrived home at half past six we had a message from our friend Donna reminding us we were due at a quiz at 7pm - I had completely forgotten this so dinner was a quick microwaved meal. Isobel seemed to enjoy the quiz, although she cannot take much of an active role now. It was good to see two of our old team members, Gill and Steve back on a visit from the Forest of Dean. For some time now we have attributed our comparative lack of success to the loss of Gill and Steve's expertise on music and modern culture (as well as their all round strength) but it did not enable us to win tonight - second by two points. Bearing in mind how long the day had been and that she had been physically active, Isobel was not as tired as might have been expected.

Isobel rose early on Sunday morning, the summer solstice, while I was still fast asleep. Euan was just going to bed at half past four in the morning and was surprised to find his mother trying to make a pot of tea in the kitchen. Euan sat with Isobel for an hour until I awoke, giving her tea and cereal for breakfast. Afterwards she went back to bed to catch up on sleep. Another bath was managed without problems and we had a rather late lunch with Iona who had called round. A lot of ice cream was eaten. After Iona had gone Isobel watched television while I did a bit of gardening for a change. We had a late dinner at about eight o'clock, meat pie, boiled potatoes and peas.

Yesterday was a quiet day after the outings and visits of the previous day. Isobel continues to eat well and although she sleeps more than before, she is awake and out of bed for more than half the day. I fitted in my penultimate teaching session of the academic year in the evening.

Today was another day without an outing. Iona came to visit in the late morning, bringing her dog with her. We changed our dining plans and had a large curry meal at 3pm; after this we all lounged around for the rest of the day. The last few days have been much less difficult than the preceding ones and Isobel seems to have a little more strength and to be walking with less difficulty.

A fairly good day today.

Isobel had a relaxing morning, Iona was not working today and came over for a couple of hours. After lunch Iona went home and we went to Queen Mary's Hospital, Sidcup, to see a specialist neurological physiotherapist.

Isobel walked strongly through the hospital to the gym (about 200 yards) and was put through a comprehensive battery of tests. The physiotherapist noticed visible muscle wasting on the hand and lower arm. It is possible that the slight problems with manual dexterity which have occurred in the past two months are not directly due to the tumour but are caused by muscle weakness. Isobel performed fairly well in balancing tests and was able to walk confidently on her own across the gym and back. During this assessment her language was much more fluent than it usually is, but towards the end became disjointed and difficult to understand as she tired. She was able to walk back to the car without any difficulty and todays performance was comparable to Friday's visit to Maidstone Hospital. Isobel has been given a simple programme of exercises to follow in the hope of improving her abilty to control her balance. They follow on from the test exercises done today and at the moment I don't anticipate she will have any difficulties doing them. The physiotherapist will see Isobel again a few days after we get the consultant's opinion on the latest MRI scan on the 26th, so that these findings can be incorporated into a revised exercise programme.

After dinner Isobel sampled an interesting bottle of green spirits from Majorca which hed been sitting in a cupboard since we won it at a quiz a year ago, "Hierbas Tunel". She had one and a half small glasses and enjoyed them, she rarely drinks alcohol these days.

In the evening we had a visit from Isobel's friend Louisa, who used to work with her at school. Louisa and I were able to swap bad back stories although Louisa's is much more serious than my pulled muscles. Afterwards Isobel finished watching the third Indiana Jones film of the week and then continued her new found interest in sport by watching South Africa beat New Zealand 2-0 in the Confederation Cup.

A mixed day today. There was another "jammed in the bath" episode in the morning; following this a number of hygiene issues were not resolved before Isobel went for her usual Tuesday spell at the Cottage Hospice. I understand that Isobel was not very co-operative on some matters with the hospice staff and there will be further discussions with the Ellenor Trust regarding improvements and extension to her care.

When Isobel returned home there was what what would be called in diplomatic circles "a full and frank discussion" about hygiene issues and some matters seem to be resolved.

In the late afternoon and evening Issobel had a relaxing time watching television - she has just about finished the Indiana Jones and Charlie's Angels films this week. No problem with food at present, today there was breakfast at home, a full cooked lunch at the hospice, a large chicken Kiev dinner and a giant helping of apple and blackcurrant pie in the evening.

Compared to the weekend, today was a better day for Isobel. We rose bright and early at 5-30am as the sun was up. Isobel has shown less signs of tiredness during the day and has hardly dozed at all.

After lunch we drove to Hall Place where we met our friend Donna for a cream tea. The plan was to walk a few yards from the car park to the tearoom, then after tea to go round the grounds by wheelchair. However when we arrived the car park was full and we had to use the overflow car park a hundred yards away. Isobel decided to walk to the tearoom, about two hundred yards in total. She just managed the walk but needed a lot of support for the second hundred yards, the walk took a quarter of an hour. Isobel enjoyed the cream tea, but part way through the sky clouded over and distant thunder and lightning suggested the tour of the grounds should be postponed. While Isobel and Donna lingered over the remains of the cream tea discussing matters of feminine hygiene I collected the wheelchair as the first drops of rain began falling. As we returned to the car hailstones fell around us.

After dinner Isobel indulged one of her new found interests and watched the USA v Italy football. She went to bed at 10pm, and hopefully will not get up at 5-30am tomorrow!

A pretty bad day today.

Isobel's language problems were worse than they have ever been; it was very difficult for her to express herself in any understandable way. For much of the time sentences were composed of apparently random selections of nouns and verbs.

Walking and balance were also problems today. She has eaten well and Iona helped her bath and wash her hair in the middle of the day.

This variation from day to day started early this year, during last year performance was much more predictable. Hopefully tomorrow will be better.

A day of recovery today after yesterdays exertions. Somehow bathing and getting to bed last night took until 3am, with Euan and I having to lift Isobel out of the bath again. It as not surprising that she was tired after the long day.

Miranda called round to see Isobel in the early afternoon and as she left Iona arrived and stayed until the evening.

Home made curry again for supper.

An early start today, we had breakfast before 7-45 which is very early for Isobel these days. We were still getting ready to leave for Maidstone Hospital at our planned 9-30 departure time, but got away by 9-45 and arrived in good time for the 10-30 appointment. This was the first long trip with the wheelchair in the car boot, but it was not used. Isobel walked confidently throughout the visit, needing an arm for balance most of the time but supporting her own weight.

The purpose of the visit was for a routine MRI scan; Isobel has these about every three months. The results will be revealed when we see the consultant, Gill Sadler on the 26th. As on the previous scan, it took a very long time to do the imaging for some reason today. Afterwards we had a cup of coffee, but the usual excellent scones were not available. We were home by 1-30. The plan was for lunch to be followed by a couple of hours rest for Isobel, but we received a desperate phone call from Euan who was in Gravesend, having forgotten that he was due to sign on in Bexleyheath. We bundled into the car for a fifty minute round trip, after which Isobel sat on the bed drinking coffee and eating walnut cake before her next outing.

At half past five Isobel was placed in the care of her trusted friend Rosemary who took her off to a meeting of the Bexley Governors Forum. Isobel enjoys these meetings as they keep her in touch with people she worked with before her illness. Rosemary returned her about two hours later. (No wheelchair needed!).

Late dinner consisted of a large home made curry. This has been a good day for Isobel.

Bad news at the end of the day when I heard that Paul Dungate, an old friend and my former boss at Cambrian Explorations and Noranda Explorations had died suddenly.

Nothing much happened today. Isobel was tired and rested, ready for the trip to Maidstone Hospital tomorrow for an MRI scan.

Technical fixes have made an appearance in the last couple of weeks - a shower stool, perching stool and raised toilet seats, followed last Friday by a wheelchair. The latter is needed as Isobel can usually manage only about 300m on foot; although a five or ten minute sit down gives her the strength to go as far again. Other aids such as grab handles that were under consideration have not been proceeded with as Isobel tends to lose arm strength when her legs tire. The muscle weakness is attributed mainly to the long time she has be taking steroids (dexamethasone). For the moment no other technical aids are planned, although an additional handrail on the stairs to help with balance could be installed if ascending stairs becomes significantly more difficult.

Isobel spent yesterday at the Cottage Hospice, today she has had a lazy day and rather unusually has not been outside the house. She enjoyed a glass of beer while watching the football this evening and continues to have a good appetite. Fish, chips and peas for dinner with ice cream for desert, followed by chocolate pud later.