AN EXTRAORDINARY BOY PART TWO: - the wheels start to come off......

AN EXTRAORDINARY BOY - PART TWO

Chapter One

In September 1999, we settled down to the start of a new academic year. Michael was now in   the Third Form at the Royal Grammar School, and I think that he thought that giving up the choir would give him hours and hours of extra free time. What he hadn't really cottoned on to was the fact that homework was going to fill much of the space available, and what wasn't taken up in that way would be dedicated to piano and cello practice.

To be fair, I too hadn't realised how long he would be spending on all of this each evening. He seemed to be taking an increasing amount of time over his homework as the term went on. With hindsight, of course, it is probably easy to see that the tumour was starting to have some impact. At the time, though, with no obvious symptoms of illness it seemed that Michael was being obtuse about getting on with it.

I started to encourage him to travel to and from school on the train, apart from those days when I was actually going in to school myself. At first, he was rather wary of this arrangement. He had never been one for travelling around on his own. He was often very insecure when out of the house and certainly he was very cautious around traffic. His deafness didn't help in that respect. Nevertheless, he soon discovered that it was quite fun to meet up with his friends and go to and from school via the sweet shops that line the roads between the station and the school, and he found a whole new group of friends. This was important to him, because in all his time in the choir he had never been able to be with his classmates before or after school, or on Saturday and Sunday afternoons - all the times when friendships are made and sealed. These were the times when he had been at choir practice since the age of seven! He now had to find a set of friends amongst a group of boys who weren't used to his being available. Being the kind of person he was, though, it didn't take long. I quickly began to see signs of a new, confident and distinctly adolescent Michael and I rather warmed to him. He still had an old head on young shoulders, but he started to develop a more 'street-wise' way of doing things.

I had also started a new job, as Head of Keyboard Studies at the Royal Grammar School. It never fazed Michael, having a mother at the school, and in fact he developed his own way of dealing with it. One day, as I was crossing the road from the Music Department to the main school, I met Michael and a group of his friends coming the other way. 'Hi, Michael!' I said ( just to be friendly). 'Er……oh, hi,' came the rather surly reply.  As the group went passed me, one of them asked Michael who I was. 'Quick as a flash came the reply, 'That? Oh, she's Jonathan Newman's piano teacher….'. In fact, as time went on, Michael benefited from the great wave of sympathy that was automatically his by dint of his being my son.

We enjoyed each other's company on the whole, though, and would pass the time in the car on those days when I took him into school very amicably. We were both bookworms, and if he and I were on our own at home, again, many hours could be passed in companionable silence as we each sat immersed in our own volume. We also shared the same sense of humour, and I loved introducing him to Hancock, Just a Minute, I'm Sorry I'll Read That Again, Julian and Sandy, The Glums - all radio stuff that was even before my time, let alone his, but which we loved to listen to together. Graham and Christopher didn't always share this taste in programmes, and Michael and I would pass many a happy moment watching their reactions to 'Mornington Crescent'. We always said you could divide up people into friends and strangers according to how they felt about Mornington Crescent!

Michael missed his singing. Although he was glad to be free of the time commitment, the fact that Christopher was still singing, and of course Graham and I were now trying to redress the balance by attending services at Windsor more often, meant that Michael had constant reminders of the music he had left behind. He hadn't left it totally behind him, though. He was asked to repeat the solo treble role in the 'Chichester Psalms' at a concert in Guildford, with the Guildford Chamber Choir. The date was October 16^th, (Graham's and my wedding anniversary), and he was careful to make sure that he could still remember how the music went. However, as the date approached, he wasn't at all happy with his voice. It certainly wasn't breaking, wasn't even starting to 'darken' or lower, but he was finding it terribly hard to control. I also thought that his intonation was not as faultless as it always had been both when singing and on the cello. I found it very peculiar, and wondered if maybe there were lots of hormonal changes going on which might account for it.

We got to the rehearsal on the Saturday, and the difference between Michael in October and Michael three months earlier was very obvious. By the end of the concert, he was very upset. He kept on saying that he simply hadn't managed to make his voice do what he wanted it to. I thought it was lovely, but admittedly it wasn't up to the standard which my son always set for himself on these occasions. Still, as I told him, he'd had his name on enormous posters all round Guildford and he'd helped raise a lot of money for the Guildford Breast Cancer Charity on the evening. That was something to be proud of on its own. As ever, he had a delightful write-up in the local paper and everyone had enjoyed hearing him sing again. So I didn't worry too much about it.

Michael had other ideas, however. He had also been asked to sing in Faure's 'Requiem' once again, this time with a choir in Wokingham. He kept on saying that he didn't think he was up to it, and as the date in November drew closer and closer, he kept on saying that he didn't think he was up to the standard required. Finally, he sang the 'Pie Jesu' to the conductor, who listened carefully and said that although it was fine, it certainly wasn't vintage Michael, and he agreed to use a soprano from within the choir instead. Oh well, I said, at least Michael has had his name on all the posters again!

We managed to fit in a half-term break. We had a few days at a Sunparks centre in Belgium, where there were on-site swimming and other sports facilities for the boys (and a cake shop for me!) and plenty of nearby sights as well. It was good to have a few days away together and we managed to pack quite a lot into it. We visited 'Efteling', the Dutch theme park. Michael was quite happy to ride on the wooden roller-coaster, but Christopher had his eye on the 'Python', which went upside down, looped the loop and did other stomach-churning things as well. He went off to join the queue, and I sent Graham with him as I was a bit concerned about him waiting in line on his own. 'OK, but I'm NOT getting on it,' Graham grumbled as he went through the entrance. Michael and I found a good vantage point for viewing.

Suddenly Michael shouted. 'Here comes Chris!!! ' Then, '….and here comes Dad too!!!!' We laughed ourselves silly because Graham didn't look to be enjoying himself too much. Christopher has a habit of doing that to his father!

We also had a day at Waterloo. I didn’t know anything about that period of history at all, but Michael was studying it at school and so it was particularly relevant. It was a crisp, cold and beautifully sunny day, and we had a terrific time both in the village museum itself and out on the battlefield site. Michael was regaling us with tales of the various parts of the campaign, and even Christopher took a real interest in how it all fitted together. It was a really enjoyable family time when once again we were surprised and pleased to rediscover how much we enjoyed being together with no commitments.

Meanwhile, Michael was becoming more involved with the Surrey County Youth Orchestra, where he was building another circle of friends. He was very excited about the prospect of playing at the Schools Prom in the Royal Albert Hall. He'd already sung there at the BBC Proms, of course, but I had never played there and I think that gave him a thrill all of its own. It was on the 9^th November, and the coach was leaving from Guildford at lunchtime. I remember very clearly Michael coming over to my teaching room in morning break. He told me that his right ear had suddenly become completely blocked. He simply couldn't hear properly out of it - no sense of fullness or 'popping' ears, just a complete lack of ability to hear properly. I was immediately concerned because Michael NEVER complained unless something was really wrong - too scared that I would march him into hospital, for a start! So I told him I would make an appointment with Mr Chapman, which I did that day. It didn't stop him from going off to the Albert Hall, and Graham and I somehow had seats in the front row to see him play in his first and last big orchestral concert. He really enjoyed himself - as much in the exploits he and some other boys got up to between the rehearsal and the concert as for the concert itself. But that didn't worry Graham and me, because it was a refreshing change to see Michael behaving like any other teenage boy.

Michael had one other big singing arrangement lined up. A new edition of the 'Junior Praise' hymnbook was being issued, and all of the songs were being recorded by primary school choirs. My stepmother happened to know the man doing the actual recording, and he asked whether Michael would be interested in recording a few of the numbers as solos items. This sounded like good experience, and so we said yes. The music arrived, and because of the problems Michael was having with his voice we lowered some of them by a few keys. He was originally due to make the recording on November 27^th, but as it happened, on that date he wasn't feeling at all well. He had some kind of flu-ish bug - and this was unheard of for Michael. He simply didn't feel right in his head, and he certainly couldn't sing, so the date was postponed to after the end of term. Once again, with hindsight should we have suspected something? In all fairness, all children are unwell sometimes and if every parent started with the premise of a brain tumour being responsible, the entire NHS would grind to a halt in a matter of hours.

Even now, I still had absolutely no inkling of what was coming around the corner.

Chapter Two

Wednesday, December 8^th 1999 is a date that resonates in my mind. It began just like any other day - but then, they all do, don't they? I always think that when you wake up in the morning, you never know whether it is going to be a day 'just like any other' or whether your life is going to be irretrievably and irrevocably changed forever by teatime. We have all had a few of those in our lives, and this was one of ours.

I drove Michael into school as I had a cello quartet rehearsal at 8.30, and he was one of the players in the group. The boys were working on 'White Christmas' with varying degrees of success in a good rehearsal with lots of good-humoured banter and not a little complaining from me on the subject of doing more practice. We finished and the boys all went off to their respective lessons, whilst I settled down to a morning's teaching. Michael seemed in particularly good spirits; by far the shortest of the four, he sauntered across the road with his hands in his pockets and his head craned to talk to the other, more lofty lads as he walked.

In the middle of the morning, the door of my room flew open and Peter, the Director of Music, rushed in to say that Michael was in the medical room, obviously unwell. I went across the road and found Michael sitting on a bed in a rather confused state. He was also dressed only in his PE shirt and shorts. As far as I could gather, he had been in the gym doing PE when he suddenly became aware that he was very unwell indeed. He didn't seem able to describe to me exactly what he meant by this 'feeling unwell' ; he wasn't making very much sense at all. He did tell me that he knew that he had had to get out of the gym, so had asked to be excused and come to find the nurse, but he couldn't be more specific.

The nurse decided that an ambulance should be called, given Michael's strange history, and at this point I was thinking that maybe what we had dreaded had happened and one or the other of his oval windows had ruptured again. Then, all of a sudden, Michael started to try to stand up. I asked him what he was doing.

'It's the awful smell! I have to get out of here! If you let me out I'll be away from this smell and I'll be fine!'

Michael had always hated the smell of hospitals and I suppose the sickroom did have an aura of antiseptic about it, but as Michael struggled and I tried to hold him still, I noticed that there was NO real smell - it seemed to be in his head. Then, suddenly, his left eye started to roll very quickly backwards and forwards from side to side. It got faster and faster and then just as suddenly stopped. Michael sank back onto the bed and appeared to pass out.

Then I remembered when I had heard the words 'I felt terribly ill but I can't explain it. I just KNEW I was very ill……' before. It was exactly how my father described the sensation of having a brain haemorrhage. So now I WAS worried. Very worried indeed. The nurse was totally baffled by it and all we could do was sit with Michael until the ambulance arrived.

I was rather surprised when into the room strode a be-helmeted motorcyclist, complete with heavy bag and folder of paperwork. 'I'm the ambulance officer', he said, 'What's the matter with this young man?' 'You can't take him on your BIKE,' I blurted out, 'He's only got his shorts and a T-shirt on!'  'Madam,' he explained kindly, 'I am simply the advance party so that I can see whether or not we need to take him to hospital.' I went over what had happened and the consensus was that Michael needed to be admitted. He was still sleeping and couldn't be roused. He didn't even notice when the ambulance arrived and two further ambulancemen lifted him onto the stretcher and left for the hospital. It was unfortunate that he was carried out as the Headmaster went past with a group of visitors. But then, as I told Michael later, they probably thought that he was a distinguished sportsperson injured in the course of duty.

I went to collect the car and drove to the hospital separately. Ambulance personnel discourage parents from following the ambulance directly and I can understand why. When you are petrified and your mind is racing away, you are not fit to drive properly in any case, but when you are obsessed with sticking close to a vehicle it is easy to make some fairly major mistakes. In any case, I arrived at the hospital before Michael. I booked him in - always a lengthy process because his history was so long - and then joined him in the cubicle where he had been left, still asleep. The Casualty Officer decided that the problem must be ENT related, given Michael's history. He contacted the ENT ward, but apparently something went wrong, because it was very many hours later that we arrived on the Ward, by which time the consultant had left for the night. By this time Michael had woken up and was not so confused, but he did have a monumental headache, his first ever. The house officer checked Michael over and decided that he had had another perilymphic leak. I tried to say that all the symptoms were entirely different from the previous episodes, but she said they could all be explained by the presence of another leak, even down to the nystagmus in his eye. However, she felt we should see Mr Chapman again as soon as possible but since Michael was awake and fairly mobile, she suggested we took him home and brought him back in time for the beginning of Mr Chapman's clinic the next morning, at 8am.

We took Michael home. He was very tired and rather distressed, but there were no obvious symptoms to report so we put him to bed and kept an ear open for him all night. He didn't want to get back in the car the next morning. He wanted to lie down flat for some reason, but couldn't explain why. We went to the ENT department, where we were greeted with totally blank faces, No one knew who we were, why we were there or, more importantly, where Michael's notes were. Nor could anyone tell us when - or if - Mr Chapman would be in. Michael was lying across several seats looking wan. I was becoming more and more convinced that this was NOT an ear problem. After a couple of hours of this, Graham went out and dialled Mr Chapman's private secretary. She told us he wouldn't be in until after lunch. So we took Michael home - again. He spent the morning in bed, following which we went back to the hospital for a third time and after a couple more hours we saw Mr Chapman. It took him less than five minutes to tell us that this was not an ear problem, it was a neurological problem. He made a few phone calls and within an hour we were back at St Peter's. Michael was booked in with the customary and incredibly lengthy discussion of his history and all the attendant hospital stays, and we waited for the arrival of the registrar. Michael was still complaining about a headache, on and off, but other than a certain amount of tiredness and 'not-with-it-ness' he seemed OK.

The registrar arrived and gave a clear diagnosis of migraine. Was it in the family? Graham's mother gets them occasionally. 'There you are, then.' I tried to say that my father had had a brain haemorrhage at the age of 31, but that was brushed aside. Because of Michael's quirky history, and no doubt because Graham and I were so clearly anxious, Dr Newton decided that there would be no harm in arranging an MRI. Unfortunately, that could not be organised before January 31^st. Nevertheless, Michael did look a little better, and although he was kept in St Peter's overnight, there was no reason for him to remain in hospital any longer than that, and by Friday night he was back at home, quiet but otherwise all right. Term ended on the following Wednesday, and even by then, Michael did not appear to be back to his normal, cheerful self.

He still had the recording to look forward to, though, and a few days before Christmas he went up to Worcester to stay with my father and his wife while he made the tape. He wasn't very pleased with it; again, he felt that his voice wasn't responding properly to what he was trying to do with it. I think the results are very special - and so did all the 750 people at his funeral, who heard one of the songs played at the very end of the service. My father took him out and about after the recording was made, and Michael enjoyed himself in the kitchen making cookies to bring back home for Christopher. I arranged to meet Dad and Michael at a service station on the M4, to save Dad having to drive all the way to West Byfleet and back. I got there first - he was having to drive through snow - and was sitting in the café drinking coffee when they arrived. As they walked in, I said to Michael, 'Are you all right?' 'Yes,' he said, 'Why do you ask?' Dad said he was fine and been reasonably talkative in the car except that he had fallen asleep for a little while. Certainly he looked as though he had just woken up - but more than that, he looked 'spaced out' and I returned to that several times over tea and biscuits before Dad left to return to Worcester and Michael and I drove home.

Michael singing 'Starry Night' 

Christmas was a new experience for Michael because he had to spend it at Windsor listening to his brother for the first time. He still seemed tired, and he didn't eat anything on Christmas Day, but then as people kept on telling me, teenagers do tend to sleep a lot in any case. I'd like to write about Christmas in some detail, because it was Michael's last Christmas, but the truth is - I simply don't remember it. There are no photographs or funny memories - nothing. I can't even remember what we bought him for Christmas, I am ashamed to say.

Christmas Day, St George's Choir School, Windsor Castle

I do remember that my sister brought her new baby round; he was three months old at the time, and, like his father, Michael was always very good with babies. I think it has something to do with the fact that he loved - and was loved by - small animals. The one character who mattered more than anybody else to Michael throughout his life was Pugwash, his cat. We have two cats, Pugwash and Jake, but from Day One when they arrived back in 1990, there was never any question about whom Pugwash considered as Top Human. That cat ignored the rest of us in true contemptuous cat style until the day Michael died. He slept on Michael's bed, he waited at the bottom of the stairs for him to come home from school or for him to go upstairs at bedtime, he sat with him during the day - and he treated the rest of us with unadulterated disdain. And it was mutual. If you wanted to upset Michael, suggesting his cat was (whisper it gently ) F-A-T would bring forth an explosion of venomous verbiage. Funnily enough, all cats loved him. And goats. The cats I could understand, but whenever we went to a farm or a zoo, it was never long before Michael had a Pied Piper-like trail of goats behind him. I had a number of theories on that one…….

Babies were similar. He liked them - because they were smaller than he was, for a start. He was particularly attached to Tim and he spent a lot of time kneeling in front of his baby chair trying to encourage him to smile. We have some lovely pictures of the two of them together.

So I do remember that side of it; but maybe Christmas has been obliterated from my mind because of what came next.

As a family, we had always been to the pantomime after Christmas once singing was over for the holiday. By 1998, I had decided that maybe the boys were getting a bit old for that and we tried going up to London to see 'The Nutcracker'. Well, they were not too sure about that, but they quite enjoyed the music. So I decided to do something similar in 1999, and I had booked tickets for 'Phantom of the Opera' on December 28^th. The boys thoroughly enjoyed it; Christopher had been to see several West End shows with his school, but it was a first for Michael and he was fascinated by all the special effects. He particularly enjoyed matching up the 'proper' version with the bowdlerised version which we had produced for Andrew Millington's farewell the previous July!

We were making our way out of the theatre when Michael suddenly slumped against the wall. 'It's happening again….,' he whispered. I pulled him through the crowd of people and out into the street and leant him against the wall. He said he felt 'very strange', but, again, couldn't be any more specific than that, and complained about galloping sounds in his head. He was very certain that the sounds weren't in his ears, but were right inside him somewhere. He became rather disorientated, but there was no nystagmus or headache. Graham and I desperately tried to flag down a taxi to get him back to Waterloo. It seemed to take forever but finally one stopped. He climbed into the back and seemed to fall asleep; we got him out at the station and onto a train. To my utter amazement, about halfway home he seemed to 'come to' and actually suggested we stopped off at the local Harvester for dinner on the way home - which we did. And he ate very well indeed!

Graham and I couldn’t see how this tied in with migraine and began to count the days to the MRI.

Chapter Three

Despite all the medical dramas which were going on, we were all thinking about how we wanted to celebrate the Dawn of the New Millennium (or NOT the Dawn, depending on when you believed it to be). We had had a number of discussions on the subject, trying to decide whether we wanted to be alone, with other people, away from home or just quietly in our own house.

The boys were of the view that they wanted to have dinner at home and watch it all on the television. We invited Graham's mother, but apart from that there was just the four of us. We still had vast quantities of champagne left over from our birthday party and it seemed the perfect excuse to open it. On New Year's Eve, though, Michael got up complaining of a headache, and for the first time in his life he asked me for some painkillers. After breakfast he came into my bedroom to talk to me, and within ten minutes he was asleep where he had sprawled across the bed - I had never seen him like it before. He woke up at around lunchtime, and I remember my mother-in-law, who had phoned up to ask what time she should come over, asking whether we would prefer to cancel. 'Nonsense,' I replied, 'It's only a headache. He'll be fine.'

And he was. We had a lovely dinner. Michael seemed totally recovered, and he and his brother helped Graham to set up a fireworks display in the garden. It was all rather ad hoc - no fears of threatening the big display over the Thames - but we had a good evening. On the stroke of midnight the sky around the house was alive with noise and colour, and the boys tried to split themselves between watching the television and rushing down the drive to see what was happening 'live'. We all went to bed at around 1am.

The next morning, Michael again woke up with a bit of a headache. It seemed to wear off by mid-morning, and we went down to the Cathedral at midday for a special service to welcome in the new century. Canon Maureen Palmer stopped to wish us a happy New Year and to ask after Michael. He said that he was OK, he just didn't quite feel himself. Geoffrey Morgan had a chat with him and then said to me, 'You know, Berrie, he doesn’t look very well, does he?' I agreed, but could do nothing but wait for the MRI.

January 2^nd dawned - and Michael still had a headache. I wasn't looking forward to the day in any case. Graham had been given a family ticket for the four of us to go and look round the Millennium Dome. This seemed like my idea of hell, and so it was. I could not believe the amount of noise inside. The boys were interested but rather overwhelmed by it all; the highlight of the day was the special 'Blackadder' film, but I became even more agitated when Michael leant across as the film started and asked if I had any painkillers. Looking back on it, I can't imagine how he lasted all day under those circumstances.

By Monday, January 3^rd I was starting to lose patience. Michael seemed to have this headache which lasted until all danger of me asking him to do any cello practice was past, at which time it disappeared and he cheered up. I sent all three of them out on a bike ride to get some exercise and leave me alone for a bit. When they came back, Michael said he had a terrible headache and went straight up to his bedroom where he lay in the dark. By nine o'clock, he was being sick. I phoned the local on-call doctor's service, but Michael's history was far too complex for a locum to deal with and I was told to give him paracetamol and brufen and see my own GP the next morning.

How on earth I was lucky enough to see a GP at 9am the morning after that big Bank Holiday I will never know. Our GP wasn't working, and I saw a young locum whom I had never met before. He appeared very flustered but he took one look at Michael, who was lying down on the couch with his eyes shut and his hand over his eyes, and asked me why I hadn’t already gone to Casualty. I was amazed. 'With a headache? Over New Year? Why would I?' The doctor looked hard at me and said, 'Well, you're going there now.' He was certain it wasn't meningitis, but beyond that he said nothing. I made some hasty arrangements for Christopher to spend the day with a friend and then packed a bag and left for St Peter's.

We spent a long time in Casualty. Michael wanted all the lights off and was desperately trying to shift into a comfortable position. He kept trying to be sick, as well. The Casualty doctor didn't know what was going on, but she made arrangements to have him transferred to his own room on the children's ward where he could be monitored, and he lay in silence in the dark all day. He couldn’t bear noise or light.

Unfortunately, VERY unfortunately, Dr Newton was taking what must have been his first holiday in years. His stand-in was less than impressed with Michael. Her view was that it was a migraine. By the next morning, on Wednesday, she had decided that maybe he had a neck problem and should see a physiotherapist. I don't think that idea can have lasted very long, because certainly no one from the physio department ever turned up. Meanwhile, Michael was crying in pain pretty much all the time. Treatment had begun with paracetamol but quickly moved up a notch to Voltarol. Michael was still trying to be sick and so the dosage was swapped to Voltarol suppositories - nothing worked. I remember that at one point, Michael managed to get on top of the pain for 20 minutes - but that was all. He kept on saying, 'I've never felt so ill in all my LIFE, I KNOW I'm not very well at all and why won't anyone BELIEVE me??'

I continued to ask whether this could be a brain haemorrhage. I was told several times that they knew it was a concern of mine because of my father's situation, but that I should put it right out of my mind. There was no evidence of that whatsoever. Meanwhile, the lady consultant returned, drinking from a pint of milk as she did so. She told Michael that he had a migraine, that he and his Mummy (sic) were concerned because of his difficult medical history, but if he just relaxed and stopped fussing his headache would probably go, and we could all go home.

I have to confess at this point to being both a hypochondriac and a veteran of all TV and radio medical programmes, from phone-ins to documentaries. Not for nothing has Graham been known to turn to me during a medical drama and enquire what Nurse Berrie's diagnosis is, long before the fictional medic gets a go. Usually I am right, too. I began to wonder what was going on here. But in all honesty, I have to say that at absolutely no point whatsoever, not for a single solitary second, did it EVER occur to me that Michael might have a brain tumour. If it had, I would have been jumping up and down on someone's head by this stage. I don't know how I had managed not to consider it. I think I was still thinking that he had had a stroke of some kind.

He was certainly suffering. By the afternoon of January 5^th, his voice was sounding strange. Suddenly his left eye started to develop nystagmus again. Once again I called the doctor, but these new symptoms were put down to the Immigran tablets which he had been given in an attempt to ease the 'migraine'. I wanted to see a neurologist but this was greeted with incredulity. I was told that if there were any neurological implications at all, then they would be visible behind Michael's eyes. Apparently his eyes were fine. At this point I lost it. I have never, before or since, felt quite so much as though I was on a different planet from everyone else. I was standing in front of a retching, crying child whose voice was slurred and strange ( by now he was unable to move his tongue properly to speak) and whose eye was playing ping-pong ball with itself. He wasn't making sense and he wanted to lie in the dark - and he had MIGRAINE? I fled the ward to a public phone. First I rang Graham and said, almost hysterically, 'They won't LISTEN to me! They won't LISTEN! They say there's nothing wrong and he's pretending! You've got to come and sort it out! PLEASE!!' Graham left the office immediately. But, of course, he was in London and it was going to take him a couple of hours to get there. So next I phoned friends of mine, both GPs, who lived literally round the corner from the hospital. They were quite unequivocal that I should simply INSIST on seeing a neurologist.

Graham arrived and asked to see the house officer - immediately. He was talking to her in the corridor outside, and she was just explaining to him how unless there were visual problems she was not allowed to call the registrar or ask to see a neurologist, when I rushed out from Michael's room into the corridor to say that Michael couldn't see properly, nor could he count how many fingers I was holding up. She came and had a look at him; he was staring at the ceiling and seemed unable to recognise Graham or me. He had a rather odd half-smile, almost a rictus, on his face. She disappeared to call the registrar.

He bustled in a few minutes later. 'How are you, then, mate?' he asked. I said to Michael, 'Can you see the TV, Michael?' He twisted his head to look up at the ceiling, half-smiling. His head seemed to get stuck. 'What are you looking at, mate?' asked the registrar - and Michael's head continued round and round at a grotesque angle until suddenly he was having a massive convulsion. The room filled with people as the bed was banged down flat; we were pushed out of the way as Michael writhed and twisted in a huge seizure. By the time they had stabilised him he was deeply unconscious. They moved him into the ward's high-dependency bed and still he didn't move. He had the seizure just after 6 pm and he was still unconscious over two hours later. Our GP friend arrived shortly after he had been moved and was relieved to hear that it finally been decided that Michael needed a CT scan urgently.

At about 8.30, Michael seemed to begin to stir. He wasn't able to move his limbs properly and the panic started to rise in my chest. He was confused and disorientated, and we sat and talked quietly to him to try and keep him - and ourselves - calm. By now there was no doubt in my mind at all that he had had a stroke. The on-duty consultant neurologist arrived to read the CT scan and we were wheeled down to the scanning department - complete with an entire trolley full of resuscitation equipment. All of a sudden nobody was thinking 'migraine' any more.

Michael slept throughout all of it, probably fortunately, and as we prepared to move him back to the ward Graham asked the registrar for a preliminary report - basically, had they seen anything on the scan. 'Yes,' he said, 'On the right hand side of the brain.' I couldn't believe that - Michael's problems had always been focussed on the LEFT side. I assumed there had been a bleed of some kind and we awaited the neurologist's opinion.

He arrived with a copy of the scans shortly before midnight. He showed us an area, about the size of a plum, in the right temporal lobe of Michael' s brain. He told us that it was a brain abscess, not a pleasant thing but something which would hopefully respond to intensive antibiotics which he proposed to commence straight away. He faxed the scans across to the Atkinson Morley Hospital in Wimbledon, which is the country's leading centre for brain related injury and illness, so that they could confirm his thinking.

While he was talking to us, the paediatric registrar arrived to tell us that the Atkinson Morley Hospital was on the phone. They wanted Michael transferred to them at once. There was a lot of discussion on the subject, and finally the neurologist agreed to arrange for an immediate ambulance transfer. Graham went off to pack a suitcase, and I stayed with Michael whilst all the necessary precautions were made for his departure. Once again, all the resuscitation equipment was made ready and he had a line put into his hand so that he could have all necessary medications with the minimum of fuss. In fact, at this stage, he was quite chatty and simply rather confused at what was going on. I was still worried sick, but at least we had a name for what was wrong at last, and everyone seemed positive that a complete cure could be expected.

The ambulance arrived at 2.15am and we arrived at AMH shortly before 3am. Christopher was staying with a friend but was expected back at school that afternoon to sing a special Epiphany service, so we had a few hours' grace before I had to start worrying about him, too. We walked into the children's ward and were met by kind and smiling faces, and I suddenly felt that things were going to be all right.

The senior house officer arrived shortly afterwards. 'Mr and Mrs Norton? Good to meet you. I am sorry to drag you over here in the middle of the night,  but we have had a good look at Michael's scans and I am afraid to tell you that we are fairly sure that this is not an abscess. We think he has a brain tumour.'

Chapter Four

I was so tired. I hadn't slept since early on Tuesday morning and now I was hearing something I simply could not take in. The staff moved in quickly. Graham wanted to stay next to Michael and he was found a mattress. I was taken downstairs to the day ward, where a bed was made available for me. We were given milky coffee and biscuits and told to sleep for a few hours; we couldn’t, of course, but when I returned to the ward the next morning, I found a hot bath waiting for me. Such kindness after the previous few days was almost too much.

The surgeon arrived at 8.30am. He was wonderful. He explained the word 'tumour' to us, and we understood that tumours can be benign or malignant, but that with brain tumours, the dangerousness of each individual mass depends as much on the location as on the malignancy of it. The 'good' news for Michael was that the mass appeared to be well-demarcated, in other words fairly well encapsulated, and because it was relatively close to the edge of the brain, he was hopeful of removing it in its entirety. He explained that he would not be able to give us any kind of prognosis or diagnosis as to what kind of tumour it was until after it had been removed.

Brain surgery! That was something we had not expected at all. I think Graham and I were totally bemused. Michael wasn't, though. 'Did I hear the word 'tumour' mentioned?' he asked. 'Does that mean I am going to die? What's happening?' The surgeon looked to us for advice. We told him that if Michael was asking, he'd better come across with some answers. We knew that if he hadn't wanted to know, he wouldn't have been asking the question. So he went over it with Michael in as honest a way as he could. Michael was quiet, but relatively calm, helped enormously by the fact that the pain was at last under control. It was arranged that the surgery would take place on the following day, provided there were no unexpected emergencies.

Michael was taken for an MRI , but before that could happen, he needed a chest xray, so that the radiologists could be satisfied that the teflon patch from his heart operation all those years before was not going to affect, or be affected by, the very high magnetic field in the MRI machine. Graham pushed Michael to the scanning department in a wheelchair, across the rough terrain of the car park and in very cold temperatures indeed. He was awake, chatty and quite cheerful, and I found it hard to believe that he could be so ill when to all appearances he was the best he had been in over a week. The reason for that, though, was that the AMH were experts at pain relief and Michael was no longer in such acute discomfort. He went through the scanner in good humour, dozing off for a minute or two, and although he was still very anxious to be out of the light, by the middle of the afternoon he was calm enough for me to be able to leave him with Graham while I went home to see Christopher.

Christopher had been singing Evensong for Epiphany at the Chapel, and my father collected him at the end of the service and brought him home. His first question, not surprisingly, was 'Where's Michael? Is he still in St Peter's?' I had to tell him that the brother he had left on Wednesday with a migraine was now in a major London hospital with a brain tumour. He couldn't take it in. He sat quietly for a while with tears rolling down his face. Suddenly, the phone went. It was Michael, ringing from the hospital. I handed the phone to Christopher, who started to talk to his brother. He settled himself into a more comfortable position in the corner of the settee, alternately nodding and murmuring assent or concern. Then he said, 'Yes, Mummy has told me. You know what she's like, she's tried to make it all simple for me…….'. Then there was a bit of giggling, and they hung up. That night, I didn't sleep. And I heard Christopher crying quietly in his room, too. Finally he crept in with me, and we lay awake together. I left very early to get back to the hospital, and found Michael in good spirits. I have to say he was one hell of a lot better than I would have been under those circumstances. My father and his wife brought Christopher up to see him just before his operation. Christopher couldn't really deal with it; he was very tearful, but once again the nurses were wonderfully kind and the sister took him out for a little walk to explain to him what was going on.

Michael was wheeled into the anaesthetic room at 12.25. His little hand-sized teddy was pinned to the anaesthesia machine for the length of the operation, and we told him how much we loved him as he drifted away to sleep. Graham and I then spent our customary hour in the hospital chapel. I'm sure God was thinking, 'Oh no! Not those two again!' - but we went anyway. I think a lot of our prayers were very angry at this stage; how could Michael have gone through so much and then get something like this? What was the point of it? If we had come across the answer to that, we would have solved all the world's problems at a stroke, of course. We half-ate a sandwich and wandered back to the children's ward, where we sat not reading the paper, not watching the television and not drinking tea until 4.15, when we were called up to ITU.

Poor Michael. He was in a bad state. He had a hard layer of bandages wrapped right round his head, like a sort of papier-mache turban, from under which were running a number of drains and tubes. He couldn't open his eyes terribly well, because the bandage 'helmet' was so low, but we could see straight away that we extremely distressed and clearly in an awful lot of pain. We could say nothing to comfort him and were quite distraught ourselves. The nurse looking after him was quite alarmed at one point, and she called the anaesthetist back to have another look at him. He decided to administer morphine, and that took effect quite quickly which seemed to help. All his neurological signs were very good indeed, and by midnight he was ridiculously chatty - almost euphoric - and we began to relax a little. Having said that, the surgeon warned us from the very beginning that the greatest risk of tragedy was actually after the operation, when a sudden haemorrhage or seizure could occur at any moment and actually kill the patient. The risk of this happening was at its most acute in the first 48 hours, so there was no question of us thinking that we were now out of the woods. The surgeon told us that the tumour had been mostly encapsulated but there was one small 'leaky' edge; he had taken out everything that he could see ( significant words, as we were to realise later, but at the time we simply thought he had removed it all ) and he thought that the whole operation had gone very well. He did tell us, however, that Michael would need radiotherapy follow-up. The implications of this were lost on me for the moment, as the went on to explain that he would not be able to tell us any more until the results were back from the pathology laboratory, which would not be before Monday at the earliest. This all sounded fine to us on a first hearing, and we settled down for a night by Michael's bed. A room in the parents' portakabin was made available to us, and Graham and I took half the night each. It wasn't a particularly easy night; Michael was very talkative, but Graham and I were worried sick and exhausted. He absolutely craved milk, and once he was allowed to have more than sips of water he quickly began to deplete the ITU's supplies. One of the nurses came down from the children's ward, where there was only one patient at the time, armed with a couple of pints of milk and a large tin of Nesquik!

By the next morning, many of the tubes had been removed and Michael was moved back up to the ward. He was very uncomfortable and before long had been extremely prolifically sick. This seemed to make him feel a bit better, and he settled down to sleep. He remained deeply asleep for most of the day and Graham and I tried to doze a little as well. We were quite amazed that Michael could appear so comparatively well after such a major operation just 24 hours before.

On Sunday, things were a little different. Michael was definitely brighter in himself but he was very, very angry. He barely spoke to me at all and clearly preferred to be left alone. When my father and his wife arrived to see him, he was all smiles and sat up to play a couple of board games while Graham and I took Christopher out for lunch in Wimbledon. Everyone told us that this was textbook behaviour; after all, only a few short days before we had been at the Dome and Michael had a headache. Now his life had looped the loop and he needed to vent that anger on someone. I reluctantly accepted this - but I wanted to fuss over him in a most uncharacteristic way, and it hurt to be pushed aside. Nevertheless, I was pleased to see him looking much more alert. In fact, he was even able to get out of bed and walk, with a little support, to the toilet.

He continued to make excellent progress over the next couple of days; Christopher and he were watching television together and even playing video games, although this concerned me a little because of the risk of his having another seizure. He was told to go mad with cheese, milk and yoghourt because his calcium levels had been so low - interesting, then, that he had been craving milk straight after the operation! - and he did eat omelettes and have milkshakes, although nothing else seemed to interest him much.

Graham and I were getting anxious about the results of the pathology tests. I had to take Christopher back to school on Tuesday afternoon for the beginning of the new term and as the time at which I had to leave drew closer, I began to get agitated. Then the surgeon arrived, and we were shown into the sister's office. Once again, you would have thought that, after all the medical dramas I had watched on television, I would have realised that this meant Bad News. But I didn't. And even at this stage, even knowing that the word 'radiotherapy' had already been bandied about, even at this stage I thought that Michael was going to be fine. He always had been before, hadn't he?

The surgeon went over what we already knew; that the tumour was not as cleanly encapsulated as we had hoped, and as a result Michael would need some radiotherapy treatment, a 'belt and braces job', as he called it. Now he told us that the news was worse than that. The type of tumour which Michael had was called a glioblastoma - a Grade IV ( the most malignant grade) astrocytoma with a very poor prognosis. My stomach lurched downwards. Graham's face didn't change at all. We were told that this is a very rare tumour indeed in children - less than 20 per year develop it - and so the statistics are difficult to assess. Graham bombarded the poor man with questions, all of which added up to the same two things:

1)       Will my child die? and 2) How long does he have left?

Those were the two questions which he could not have answered. The surgeon explained to us that he was not an oncologist and so couldn't answer detailed questions on the nature of the disease. He had already arranged for a consultant from the Royal Marsden Hospital to visit us the next morning. Meanwhile, all he could say with a reasonable degree of certainty was that this illness would shorten Michael's life. By how much, he didn't know. We asked what we should say to Michael. He said that he would speak to Michael and answer whatever questions he asked. So Michael came in, and Simon explained to him what he had just said to us. We saw for ourselves how you only take in what you want to hear, because at the end of it, Michael said, 'Well, that wasn't so bad, was it?' We looked at each other, and decided to let it lie.

Well, how do you deal with that information? Minute by minute, is the answer. I had to go straight to Windsor to take Christopher back to school. I said nothing to him about it. There was no point until we knew more. I dropped him off, with hugs and kisses, and went to see his Headmaster. The poor man had only arrived at St George's a few days earlier to take up his appointment; here he was having to face a woman who was patently on the edge of being completely unhinged telling him the story of how one of his new charges was facing losing a brother.

Michael was cheerful enough when I got back to the hospital. On Wednesday, he had all the staples taken out of the scar - all 24 1cm staples! - and had his first look at it. He was appalled. I thought it was very neat and subtle - and he had not lost much of his hair at all. All in all, I thought he looked pretty good.

The next day, Eric Bouffet arrived, on his bike as was apparently usual. He was a paediatric oncology consultant at the Royal Marsden in Sutton. This man was something else. Very French, very tall, and with a face that was not in the least attractive and yet absolutely wonderful at the same time, he introduced himself in his broken English to Michael and sat down for a chat. Then he took me aside. He pulled absolutely no punches at all. He told me that glioblastoma is very bad news. It is ALWAYS fatal in adults; children fare slightly better. The success rate - meaning being alive five years after diagnosis - was around 40% at best, probably much lower than that in reality. The ONLY hope for a 'cure' was surgery followed by radiotherapy. The role of chemotherapy was unproven.

I didn't know what to say. Michael wanted to talk to him; he said to Eric that he was fed-up with being fobbed off, he wanted to know what was going on - with nothing left out. So Eric told him. Michael was devastated. He came out of the room in tears. 'You never said I'm going to die!' I didn't know what to say.

He was well enough to go home, and we drove home slowly and carefully, nobody saying much to anyone else. Michael was obviously getting his head around it, though, and when we got home, after the usual huge fuss being made of Pugwash, he said he wanted a diary. So I went out and bought him one. This is what it says on the inside cover:

'This is the diary of Michael Norton aged 13. The diary starts on Thursday 13 of January, and I am writing it because I have had a brain tumour removed, and it will record my fight against the cancer. I hope it may be of use to others in the future, as I am not writing it for fun.

M Norton

13/1/2000'

And here is the first entry, for January 13^th. Remember, he had been talking to Eric just a couple of hours before:

'I am home from hospital today.

I have been told that my tumour is very viscious ( sic ) and nearly always fatal in adults, but because it was removed as far as they could see and I am a child, I have a 40 - 80% chance of coming through

it. Apparently 20 children a year get it, it is so rare. I am seeing Dr Bouffet on Monday at the Marsden hospital about my radiotherapy treatment.

I have a large bald patch and look like a freak. It isn't bloody fair!!!but I will beat it, that is a promise. I am feeling very depressed and frightened.'

Chapter Five

From Michael's diary, January 14^th:

' I lay in bed thinking for 40 minutes, which made no difference, so I got up. Canon Maureen  

(Canon Palmer, from the Cathedral)' came round, but didn't give me any answers. I think Christopher is shocked by my appearance.

Anneliese (my sister) and Tim came round and guess what? I am going to be baby Tim's GODFATHER!!!!!! I am REALLY honoured and pleased. I will take this very seriously.

I wrote a 'round robin' about my condition.'

 

                                          14) Michael and his godson one week after surgery!

We had had so many letters and cards already that I knew there was no way that we could possibly reply to all of them, and I suggested to Michael that he might write a letter which we could send to all the people who were concerned about him. This is that letter - and it is important to say here and now that he wrote it entirely on his own. He had no input or help from Graham or from me at any point.

Michael Norton

Greystones, Pyrford Road, West Byfleet, Surrey KT14 6QY

Email: norton.greystones@talk21.com

I have received so many wonderful cards and letters that it is impossible to write to every single person individually, so I hope you do not mind if I send you a letter summing up my condition.

                I have spoken to the paedriatric oncologist, who has told me that my tumour is a very aggressive type, which is nearly always fatal in adults. The fact that I am a child, and the fact that I have had the tumour completely removed as far as the surgeon could see means that my chances of coming through it with radiotherapy are 40-80%. The reason the range of my chances is so wide is because only twenty children a year get it it is so rare.

                My radiotherapy treatment starts in two weeks, and I will receive it once a day, five days a week for six weeks. The radiotherapy will cause my hair to fall out and will make me tired and nauseous, so I will be unable to do full days at school for some time, I will also be unable to do sport for at least three months.

                I am rather depressed by the whole thing, but I have to be positive to get through this difficult time and beat the cancer.

                Thankyou again for all of your kind cards and letters, it means a lot to me that so many people are concerned about my health, which is a comforting thought.

PS If anyone is interested, the tumour is called a Glioblastoma

   

    Seems to say it all, doesn't it, really?

We settled down to life back at home. I wasn't really very sure how long it was going to be before Michael was able to go back to school and the Headmaster and the Director of Music kindly suggested that I should take a term's unpaid leave with immediate effect. This lifted one enormous load from my mind, and I thought that by the end of that time Michael would be back at school and normal service would be resumed. I had absolutely no idea how much time was going to be spent at hospital appointments.

Michael seemed to have recovered from the shock of his diagnosis, and the best indication of how he was feeling at the time is given in his diary:

Jan 16^th

Mum's birthday - she REALLY liked my card, which was good. I started making a web-site, but got stuck. I have weighed myself today & am 6 stone. Last time I checked was about Christmas - I was 5 1/2 stone. I have eaten more today than ever before, and my stomach feels tight. I now have about 65 get well cards. I felt a bit fed up in the afternoon, but happy enough this evening.

[Michael was taking dexamethasone, a steroid to reduce brain swelling. One of the side-effects is a huge increase in appetite.]

Michael and I on my birthday.

            

                                                                                                                                                                                                                                                                                                              

     Jan 17^th

Went to the Marsden today. The news was not good, but I can only look on the bright side. Dr Buffet (sic) is French, the radiologist is German and the Endocrinologist is Italian, so there is quite a mixture of nations helping me!

Pugwash the cat is now allowed back in my room, which is very good news. I have decided to shave all of my hair off, so that when it falls out during the radiology treatments, it doesn't feel so bad.'

What Michael DOESN'T say here is that the news about the radiation treatment was very worrying. We were told that there were many risks attached, including possible hearing loss, memory loss and damage to the pituitary gland. Refusing was not an option; the tumour would definitely return without it. We had to agree to it.

Jan 18^th

I feel that I am drifting away from God, as it hard to believe after what has happened to me.

I am having my hair shaved off at 12 on Thursday; on Saturday we are going to find me a camera for my birthday. Two tapes with solos I recorded came by post today, which was good (the hymns he recorded just before Christmas) and I went out for a short walk.

January 19^th

I went to the Marsden today to have a mask made. They put a net over my head and a semi-liquid over my face which turned into a rubbery mask almost instantly. The mask is placed over my head and screwed to the table, so I am stuck in that position. It is VERY claustrophobic and my eyes have to stay closed, so I have no idea what is happening to me. It gets very sweaty under the mask after just 3 minutes, so it will be absolute hell after 30 - 40 minutes. It burns my face, but without the heat.

I spoke to the psychologist today, but it didn't really make me feel much better.

January 20^th

I had my hair cut to a grade 1 and 2 in places, and it suits me. It makes the scar slightly less noticeable. Me and Mum went to Woking where she bought a mini-disc player, however she can't work it out yet! I went to the hospital school, and it feels all wrong. I thought I would just be allowed to do any work, but I can only do certain subjects on certain days.

I remember this day well, because I found it very distressing to watch Michael's face as his hair was cut. He sat looking at himself in the mirror with an expression almost of loathing, as if he despised the fact that this was necessary. Left to his own devices, he would have had the lot shaved off. I just felt we shouldn't be too drastic at this stage. Again, at the hospital school he sat with an air of barely-suppressed fury. He was almost uncooperative - I had never seen that in Michael before. We laughed about this later, when Michael had become so comfortable at the school that he didn't want to leave it, but I was very worried at this stage that I wouldn't ever get him willingly through the door.

Mentally, he seemed on the whole to be coping with the strain quite well. There were just a few occasions when he showed just how much was on his mind. One evening he had been sitting doing some logic puzzles when he became frustrated that he couldn't solve them as quickly as he felt he should be able to. He went upstairs to bed, but reappeared very soon afterwards. He stood in the doorway looking mutinous and then said, 'What's happening to me?' He was very distressed for some time, and it was very difficult to console him. He was also having occasional difficulties with reading; he would read one word but say a different one out loud.

I kept a record of all of this, and when we went back to the Marsden on January 25^th I had a very long talk with Eric. He gave us some suggestions; that we should feel free to come up to the daily clinic WHENEVER we were worried; that during the radiotherapy we should see the consultant radiologist each Wednesday; and that we should keep in close touch with the Marsden over everything other than coughs and colds. It began to dawn on me, for the first time, that this was going to be more than the occasional check-up such as we had been used to at St Peter's. Indeed, the radiotherapy treatment involved 33 daily treatment sessions, Monday - Friday, at 9.30 each morning. The actual treatment was only a few minutes - getting there and back took at least 2 - 3 hours, depending on traffic. Thank goodness we lived only 20 miles away. If you had to add onto that blood tests, doctors’ appointments or seeing the clinical psychologist, not to mention waiting at the pharmacy for a prescription to be dispensed,           you could write off the whole day. Thank heaven I had time off school. I quickly realised that Michael was not going to be back at school full time for a very long while.

I was very grateful for all the points of contact, mind you. I never felt alone or abandoned to the disease at all. Michael had a team of several experts assigned to him, all of whom were very approachable. We were introduced to Lesley Edwards, the clinical psychologist, at and early stage. It was her job to try to talk to Michael and encourage him in coping mentally with having cancer.

In some ways, this seemed hardly to be necessary. He was very uncompromising about it; if people asked how he was, or what was wrong with him, he would say, 'I have cancer; a brain tumour, to be precise. My odds aren't great but I'm fighting it.' No pussy-footing around for him. It surprised and shocked a lot of other people, but I was proud of him. We were open from day one. No secrets. It meant an awful lot got said. He was very unconvinced about the merits of talking to Lesley. He liked her immensely, but he felt that he didn't need to talk about it. He knew what the problems were and he knew he was the only one who could fight it. Interestingly, in one of their sessions he told her that of the four of us, he thought it was just as well that he was the one with the disease. 'At least I have got something to do', he said, 'I'm fighting the battle. Mum, Dad and Christopher can only stand by and watch.' Still, he writes in his diary about 'visualisation':

'I have to imagine a grey sphere floating on a blue sea, until it is zapped by yellow and red beams of radiotherapy and the bits of exploded sphere turn into doves and fly away.'

He didn't think it would work, but decided to humour us all anyway! He was concerned about what was happening to us as a family:

Jan 26^th

'I feel like I am a burden and it is easy just to plonk someone else to watch over me.'

This wasn't entirely fair; on this particular date I had to go and collect Christopher and take him to sit the Royal Grammar School entrance exam. He'd missed the 'proper' date because it was the day after Michael's operation. I feel badly about it all, though, reading this diary; there are several occasions when Michael felt very hard done by - and who can blame him? It tended to show in the smaller things, rather than in railing against the disease itself. Even so, it was a rare occurrence for him to feel this way, at least outwardly. On the inside, things may have been different. And remember, three weeks before this, he only had a headache. Now his life had been thrown into the air and come crashing down in pieces. But as early as January 28^th, he writes this:

'I think my funeral should be at the Cathedral and at the end, the congregation should form a conga line after the coffin.'

Michael and I resorted to a lot of sick humour. As I have already said, he and I shared the same black way of looking at things, and made a lot of jokes about brains and death which Graham, in particular, found in very bad taste and extremely upsetting. I think the problem was that both Michael and I always felt that if you talked about something in an outrageous way, you were both acknowledging it and, in a way, ensuring it wouldn't happen. Graham felt that if you acknowledged something then it WOULD happen. No reconciliation of views on that one, I guess.

I find it interesting to note, as I sit here with Michael's diary open in front of me, that he was still capable of a nice line in irony. The diary is one of those with a little homily on each left hand page. Michael has underlined one very distinctly -

'Expect nothing. Live frugally on surprise.'

Chapter Six

The beginning of February saw the start of the daily radiotherapy treatments. I was beginning to get my head around what was happening by this time, and had even begun to be profoundly grateful for the fact that we were now connected to the Internet. I had resisted that vigorously for quite some time, but was now extremely relieved to have instant access to information on brain tumours from all around the world. I spent a lot of time researching, but I could never find any particularly reassuring information. Eric Bouffet had told us from the very beginning that there a lot of unreliable web sites out there, but had given us some excellent 'jumping off' points. Thus, by the time we arrived for the first session, I knew exactly how important this treatment was going to be.

We arrived in the radiotherapy department and were introduced to Michael's 'team'; he would have the same people looking after him for the whole of the course. Michael had to lie on the treatment table, and his mask was fitted over his face and bolted to the table. It was so tightly fitted that even his eyelashes were imprinted on the perspex-like material. It was very claustrophobic for him, but the relaxation techniques which Lesley was teaching him seemed to work. We all had to leave the room for the few minutes while the beam was 'on', but I could see him on the closed circuit TV, and he could hear talking over the intercom if he needed to. Halfway through, the table was swung round and the machine reset. The beams of radiation were being very carefully directed through three key areas of the brain, where experience had shown any 'leaking' areas of tumour might be lurking. Michael didn't feel anything, but was pleased to get the mask off and get off the table. When we arrived on that first morning, there was already a large sticker chart on the wall with Michael's name on it. Although he was rather old for such things, at the end of each day's session he chose a sticker from the tin and put it on his chart. It was a good way of measuring how far through the treatment he had got.

On this first morning, we went up to the children's unit straight after the treatment to meet with the radiologist, a very pleasant German lady. She told us that she was almost certain that there would be implications for the hearing in Michael's right ear, but she would try to avoid it. She went on to say that all the almost-inevitable side-effects - memory loss, brain damage and other, less tangible things, would take 12 - 24 MONTHS to begin to appear.

Next, we were introduced to the Community Outreach nurse, Nina Patel, a lovely lady who explained to us that her job was to look after us at home, with the help of the outreach nurses at St Peter's Hospital. She talked to us about arranging to come and meet us at home. I didn't like the sound of any of this. It seemed to me that this illness was going to be far, far longer in the curing than it was in the developing. We had barely begun on the treatment and it had already been longer than the development of the illness itself.

By the time we got home, Michael was complaining about a headache again. Within no time, the headache was out of control and Michael was being sick. We had come home from the hospital with anti-sickness and anti-headache pills, but they didn't seem to be doing anything at all for the pain. We rang the Marsden to ask their advice and were advised to put him back on the steroids. Fortunately, they seemed to work. By 1am he was asleep - but for us, it was horrific to see him looking so ill again. We had to face the fact that from now on, it was going to be one day at a time - maybe for ever.

My own diary for the following day records my own feelings very clearly - and it's interesting to compare them with Michael's account:

'Every time we think things can't get worse, they just DO. Michael seems a bit better but still subdued. The r/t team gave him his treatment as he'd had his anti-sickness tablet, but then we had to go and see the radiologist again. Unfortunately (understatement of the century) it would appear that it is unlikely to be a simple question of a reaction to radiotherapy but more likely to be a resurgence of the cancer. This is devastating since we truly believed that God could give him an easy passage through the treatment. He's back on 4mcg Dexamethasone whilst they see if he settles down. If not, they'll do another scan - but that would require some difficult questions and even harder answers. Graham and I feel completely and utterly helpless. How CAN these things happen?

Michael:

More radiotherapy today. My headache is gone but I still feel a bit iffy. I have been put back onto the steroids to stop the side-effects of the r/therapy.I didn't go to school today, so I watched Die Harder, which was really good. Olivia and Daniel came round, so I whipped Daniel at chess. Nicholas Aiken came round for a chat. I went to bed fed up, but a bit tired.

Nicholas is our local parish priest and he did indeed come round that evening. He was at something of a loss, as were all our visitors, to know what to say. But he found, as everyone found, that Michael was so upfront and honest that it was easy to talk to him. There was nothing that you felt you couldn't or shouldn't say. We covered a lot of religious ground and talked about all sorts of general things. Michael brought up the subject of his funeral, as he had done earlier when Canon Maureen came to see him. He felt very reassured when he was told that of COURSE he could have his funeral in the Cathedral. Things were slightly less secure around the concept of the conga, but at least the subject was very much open for discussion. Then, just as Nicholas was preparing to leave, he said to Michael, 'Michael, I simply don't know what to say to you. I can't explain it and I have no answers. But is there anything that you would like to ask me?'

Michael thought for a minute.

'Yes,' he said. 'How do you feel about a mausoleum at St Nich's?'

Poor Nicholas - he was floored! Little did he know that in the many years of driving past the graveyard at St Nicholas' Church, Michael and I had often discussed the way it lay on the side of the hill with individual but uniform sized gravestones. Michael always said that he felt his grave should have a rather fine mausoleum built over the top, rather akin to the ones in Italian or French cemeteries. We had to explain that he would need a faculty from the church for that - and wouldn't be likely to get one, either! It was kind of eerie to hear the conversation being thrown around again - and this time almost 'for real'….

We settled into a routine with the treatment. In the morning, we would leave early and sit in the traffic jam on the A3. Michael would open the Daily Mail and do the codeword, the crossword and some of the anagrams on the way up, listening to the same radio programmes on the way up and some comedy tapes on the way back. It was certainly far from being all sweetness and light; Michael was finding that the steroids and anti-sickness pills caused horrendous problems with constipation; he found his memory was unreliable and he still had occasional problems with reading. Against that, he was thoroughly enjoying being back at the hospital school, despite his dodgy start, and he even managed to go into the Grammar School to say hello to his friends for a short while.

At the end of the first week's treatment, we saw the radiologist again. She was concerned about the visual and reading problems; she felt that it might have been caused by his brain 'firing' too quickly, putting him into a mini-fitting situation. She decided to put him onto a drug called Tegretol, which is used to control fits in brain tumour patients and in epileptics. She worked out the correct dose, which I wrote down very carefully in my notebook. I always did this, because he was on a great number of different drugs and the dosage of at least some, if not all, of them was changed each week. I checked what I had written with the doctors always before we left, and then rechecked it with the pharmacist when I collected the prescription .

Michael took the Tegretol on Wednesday night. We were quite pleased with things overall since the radiologist was happy that, after the initial headache, Michael had settled down again. She felt he had an unusual reaction to the initial dose of treatment. On Thursday morning, he was very hard to rouse, and I was not a little surprised to see he was asleep in the car. He slept in the waiting room, he fell deeply asleep on the treatment table and then all the way home again. I was a bit concerned about how he was going to cope with his godson's Christening on Sunday 13^th. I was anxious that he would simply sleep through it - and he was looking forward to it hugely. He had spent a lot of time choosing a present for Tim - and even longer trying to find some smart clothes for the ceremony. He had put on so much weight from the steroids that he was looking very chunky. I still find it odd, looking at the pictures of Michael with a fat face!

On Friday 11^th, I had a dreadful time trying to get Michael out of bed. He seemed unsteady on his feet and when talking, and he seemed to be having great difficulty in focussing properly. He had his treatment, and as we started to walk along the corridor to the car his legs seemed to buckle underneath him. I got him - somehow - to the Children's Ward where one of the nurses caught him as he slid down the wall. We got him straight into a bed. He looked awful and began to be very sick indeed. By this stage he was incoherent and he was given intravenous anti-emetics to try to stop the vomiting. Eventually he fell asleep.

No one seemed too certain why this was happening. Eventually it was decided that it was a combination of the radiotherapy and the dosage of Tegretol. He was put on a much lower dose - less than a third of the original - but we were told that it would take a few days for the drug already inside his body to work through his system, and his eyes would not return to normal until then. We were able to take him home on Saturday afternoon; he was a bit wobbly and extremely tired, but happy to be back in his own bed. We all had an early night and hoped he would be feeling much better in the morning.

The christening was a lovely occasion. Michael was determined to last throughout the entire ceremony, and he did. He held the candle for the baby and made his promises with great gravity. He stood and had his picture taken lots of times, despite the coldness of the day, but by the time we got back to the house he had enough. He collapsed onto a chair and sat and stared into space. He was so glad he had been there, though. Being a godparent was a source of huge pride to him, and he continued to take it seriously right up to the end of his life.

The next morning, I had an appointment to take Michael to see our local GP. He hadn't actually seen him for years - all his illnesses seemed to bypass the local man and take him straight to hospital! The surgery was, as ever on a Monday morning, heaving and we had to wait for an hour, outside in the corridor. Michael was still struggling a little with his eyesight and was feeling very tired as we had already been up to the Marsden for his radiothera[y treatment. From Michael's diary:

Monday Feb 14^th

Grandma came with us to the Marsden, for what reason I do not know. I saw Eric but he didn't say much - I am still on 13 pills a day. We waited for an hour to see the GP. A practice nurse came up and asked me if I had a nasty sore throat. I told her I had had a brain tumour removed. Her face was quite amusing at that point.

I felt very tired at school today. I am still having trouble reading some words. I feel a bit worn out and fed up this evening, but my birthday is nearly here!'

Chapter Seven

Maybe you are never too old to have a birthday. Michael must have been terribly excited about it because he was up with the lark for the first time in months, presumably in the hope of receiving large amounts of birthday booty. In this he was not disappointed, insofar as his biggest problem was in working out how he was going to spend the vast amounts of money which he was given. Fortunately, we were helped in the art of sitting and staring into space whilst thinking by the arrival of a lava lamp. Michael and I found it totally hypnotic. Jake the cat regarded it with very deep suspicion indeed.

Michael was tired by lunchtime after his treatment but was very touched that the team should have given him a birthday card. He rallied to play with his godson, who came for a visit, and then we went into the Grammar School to listen to some of the Senior Music Competition. This was rather difficult for both if us; Michael should have been playing and I wondered if he would ever play at school again. I also think that he registered the shock when his friends saw him and realised just how much he had changed facially, thanks to the steroids.

After a rest, he and four of his friends went round the corner to a restaurant for dinner. Graham and I went too, but sat at what we thought was a discreet distance. How could we not go out with him on what might be his last ever birthday? It was poignant but good to see him laughing and joking with his friends, who were to make such a difference to him in the next few months. He had a wonderful evening.

 

             16) Michael's 14^th birthday - out with his friends

The payoff came the next day, when he was absolutely exhausted and totally foul. I knew we had to learn to pace him and I also wanted to find a lot of little goals for him to aim for. There was a real sense of anti-climax after his birthday which wasn't helped by the fact that we had to spend the day filling out forms for all sorts of disability benefits, orange badges and other 'disabled' type things. He hated it - and so did I.

He did at least decide how he wanted to spend his money, and he bought a portable television and a video machine. We knew that he was going to be very tired for quite a long time, so I gave in on yet another point of electrical wizardry and agreed that he could have a television and video in his bedroom. He was never the type of child who would be watching unsuitable stuff late into the night, so that wasn't the issue. I had never wanted him shut away in his room for hours on end. Now everything was changing.

We were now being bombarded with phone calls from people who wanted to know how Michael was. Whilst I really appreciated it - and I needed the support - it was taking up hours and hours of our time. Action was needed, and we decided to get to grips with setting up a web site. This made life much, much easier for us, because people logged on instead of ringing up.

Meanwhile, I felt in need of knowledgeable support from other people who were going through the same thing. I spent hours trawling the web for information, and printed off half a forest of paper - none of it containing any good news at all. Then, through a stroke of luck, I discovered the Brain Tumour Listserve. This is an email list of around 900 people, all of whom have, or care for people with, brain tumours. This turned out to be the most valuable source of information I could have found. The vast majority of them lived in America, which worked well for me because I would type a question or a comment in the evening, and by the time I got up next morning there would be literally dozens of replies.

As the months went by, I came to know a few of the members much better. Before long, there was a group of about ten of us, most of whom had children with the disease, who were writing regularly, almost as a subgroup of the big list. We just got on well, even through cyberspace, and I would spend maybe a couple of hours each day writing to them.

Michael came into the study one evening with a scornful expression on his face. 'Let me guess what you're doing?!' he said.

'Writing to my friends. Push off.'

'Honestly, Mum, you spend your life on there talking to those women. You're no more than a Handbag Consortium'.

And there, in that sentence, is contained the birth of a great cyberfriendship. We women, me in the UK and all the others across the Atlantic, began to address each other as 'Dear Handbag Consortium', then 'Dear Handbaggers'…… and before long it was 'Yo Baggies!' And the Baggies we became. At the time of writing this, the Baggie friendship across the email is as strong as it ever was, with a big meeting planned in Boston for the summer. And a lot of it is down to Michael.

This marked a turning point for me in Michael's illness and how I coped with it, because I no longer felt so isolated. The emails and the web site show, in far better terms than I can write about it now, how my mood changed from upbeat to desperate and back again, swinging back and forth as the days went by. And so I think that the last ten months of Michael's life need to be chronicled as they happened, in order that you might understand just how it was for us day by day. The hardest thing is to cope with the constant up- and downturns, and writing retrospectively simply does not make that clear. So here is the remainder of Michael’s illness, recorded as it was experienced by me on a day-by-day basis…..