A Hole in the Head
The Diary of an Acoustic Neuroma
by Hugh Letheren
The First Signs
The first sign of a potential problem was recognised at a routine BUPA health check in June 1997. It was noted through a hearing test that my hearing was reduced at higher frequencies on the left side. Although this was unchanged from my previous visit a year earlier, coupled with my first report of tinnitus in that ear, it was suggested that "it may well be worth having this looked into further." Looking back at earlier years, the first time a significant difference in hearing at higher frequencies only (4kHZ and above) between the two ears was noticeable, was actually in 1995.
At the follow-up visit to my General Practitioner, Simon Thompson, in July 1997, he suggested that all was well. He stated that he believed that there was a tendency for these BUPA type "medicals" to raise awareness of relatively minor deviations from some arbitrary "norms" and that my hearing did not warrant any further investigation. I believe he implied that if there was something amiss then nothing could be done about it anyway!
During 1998 I became increasingly aware of a loss of clarity in hearing on my left side. I had to go on several courses in the second half of the year, at which there were coffee breaks with lots of people talking at once in crowded rooms. There were also meals shared in noisy environments. Both situations gave rise to increasing embarrassment. I had to start apologising for being unable to converse normally as I was having to guess what people on my left were saying.
As a result, when I attended my BUPA medical on 10 November 1998, I mentioned this problem to the doctor. In her report she recommended referral to a specialist. After her report arrived, I asked my GP, by phone, for a referral. It was possible to arrange a consultation at relatively short notice, due in part to my private health insurance. As a result, I saw Philip Scott at the Harbour Hospital in Poole on 7 December. He recommended an MRI scan, largely to eliminate the possibility of diagnosable problems. He was confident that the scan was most unlikely to reveal any difficulties. We discussed the possibility of a course of steroids. This, he explained, does occasionally have some beneficial effects, although the reasons for this are not properly understood. We agreed that the potential side effects outweighed the possible benefits and as a result we would await the outcome of the MRI scan before proceeding further. I had accepted that my problem was relatively minor and that it was "just one of those things" for which there was probably no treatment. Before I left, I donated a little blood for some precautionary diagnostic tests.
I was able to arrange an MRI scan at Poole Hospital very quickly – again thanks to my private health insurance. I attended on 11 December, at 8.45 am. I had assumed that it would take about twenty minutes, having taken advice when I booked the scan. I had a meeting to chair at work in Christchurch, starting at 10.30 am. There should have been plenty of time to get from Poole to Christchurch. Little did I know!
The hospital has a multi-storey car park attached to it – "pay and display" with no change machines. I met the parking attendant as I parked (!) and was directed across the road to a nearby garage to get some change.
Having originally arrived in plenty of time I was now only just in time. After a wait of about ten minutes a form had to be completed. It asked whether or not I had ever had any metal removed from either eye. I remembered having got swarf in my eye during my engineering training so felt it right to admit that it was a possibility. This meant that I had to have an X-ray of my eyes to make sure there was nothing left from that incident, some thirty years previously. This entailed a long accompanied walk to the A & E waiting area, where I was left to wait my turn. I was "entertained" by the bizarre stream of bloodied and bowed individuals passing through. I was now concerned that my parking ticket would expire before I got out and my meeting was in some jeopardy. Eventually the x-ray proved negative and I was accompanied back to the MRI scanner Unit. I rang work and asked for someone else to chair the meeting, as it was now 9.45 am and I had yet to have my scan.
I was told to leave my jacket and valuables in a locked cupboard and was taken to be introduced to the MRI scanner in shirtsleeve order. It was very large and white, in a fairly spacious room. I lay down on the machine’s table on my back, was given earplugs and had my head held in place with pads. Some soothing and re-assuring words were offered as I was raised and propelled slowly into the tunnel in the middle of the machine. I was advised to close my eyes, as the roof of the tunnel would be very close to my face. It was well lit and airy but a bit claustrophobic and an itchy nose would have been a disaster! A disembodied voice warned of the impending noise and how long each scan would take. There were several, some took a few minutes, some took a long time, but with no access to a clock or watch, the passage of time became entirely subjective. I was intrigued by the different sounds the machine made, presumably each different sound was associated with a different type of scan. Eventually, I was extracted from the tunnel but my session was not over yet. A doctor appeared and mumbled something. I was still held in place by pads each side of my head and was wearing earplugs. Perhaps he wasn’t mumbling at all!
I gathered that he needed to inject something into my arm to enhance the images that the machine was capturing. Up until then, I had been fairly cool, calm and collected. I had re-assured myself that this was all routine and that there was nothing to be found. For a moment I panicked and then was re-assured as I remembered that Pru had undergone several MRI scans, including one looking for the cause of her pulse tinnitus. This had involved a similar injection and her scan had revealed nothing.
I was returned to the tunnel for what seemed like ages and experienced some more variations on a sound theme from the machine. Eventually it was all over and I was allowed to stand upright again with the warning that I might be dizzy, having been prone for so long. I wondered why, when one sleeps all night prone…….? No one let on what, if anything, had been found. I was told that my consultant would be in touch soon to let me know the results. I returned to work at about 11.30 am, embarrassed at the time it had all taken.
I heard nothing for nearly a week and assumed that this meant that all was well. I suppose I expected a phone call to confirm this and that I would be offered the opportunity for a follow up in some several moths time. However, I received a call the following Thursday from Mr Scott’s secretary, asking me to see him. She gave nothing away when I questioned the need for a consultation. I agreed to see him the following Wednesday, 23 December, at the Nuffield Hospital in Bournemouth.
I was still convinced that the consultation was a routine follow up and refused an offer from Pru to accompany me. As I walked into his consulting rooms I could see a scan on his x-ray viewing box, hanging on the wall. His first words were "I presume you know that we have found something".
He went on to explain that I had an acoustic neuroma. He was at pains to explain that it was benign and very small. He explained that surgery was probably the best option. He showed me the scans, which revealed the growth and drew pictures to explain each of the three surgical routes for its removal. He explained that the condition was extremely rare, "six in a million" and that it had come as a surprise to him. I got the feeling that he had not had the experience of conveying bad news to patients that often. Maybe I do him an injustice. He was very understanding and patient. I asked as many questions as I could. I found some of his language "uncomfortable." His first use of the word tumour had me saying "ouch" out loud. He quickly explained that the word simply means "growth", and that it should not be exclusively associated with cancer. His efforts to use other words such as growth and lump only seemed to make matters worse. I should have been relieved that though the news was not good, it was not life threatening. I suppose I was but I was still clearly shocked at the thought of having to undergo surgery on my head.
I challenged the meaning of the words "very small." Of course it looked very small on the scans but then I realised that to fit so many scans on a single x-ray photographic sheet they were reduced in size – perhaps a quarter or a fifth scale. He read from the MRI report: "10mm by 5 mm." That didn’t seem so very small to me! I have since learned that acoustic neuromas can grow to the size of a tennis ball before causing any symptoms!
We discussed the options for surgery and where it should be done. Philip Scott said: "You need to have this done by someone who does it every day" – I couldn’t have agreed more. He opined that Southampton Hospital specialises in one of the techniques but it is only appropriate for those cases where preservation of hearing is unimportant. As my hearing was still quite good, the chosen procedure should be one which had the greatest chance of preserving hearing. I was offered Manchester or London and opted for the latter on purely logistical grounds. He said he would make arrangements for me to see the Professor at the ENT hospital in London.
I understood that this sort of surgery carries the risk of damage to another nerve that runs close to the acoustic nerve. It controls the muscles down the side of the face. We did not pursue this any further.
Eventually, I could not think of any more questions. I asked for and was given his home telephone number – a generous and thoughtful response. I left with my mind in a whirl:
A two week stay in hospital, plus two months to recover; could be more, probably not much less
Benign, not cancer and therefore be grateful, it could have been much worse
How do I tell people, Pru, the children, my parents?
How do I tell people at work – should I keep it to myself?
What will be the effect on my career?
How will Pru cope with this?
Sharing The News
Pru was out shopping. I phoned her from the car, determined not to say anything much to the answerphone. When the machine answered my mind went blank – I didn’t say much but enough, upon reflection, to worry her. How selfish!
I went shopping in Bournemouth for half an hour. It was, after all, the day before Christmas Eve and I still had some things to buy for Pru for Christmas. I was OK while shopping; it was out of my mind. I returned to work, determined not to tell anyone. I blurted it out to my secretary within five minutes! I asked for a briefing from Rod Armstrong, who had attended a Team Brief while I was out, on my behalf. When he left he said that I should tell him what was wrong, when I was feeling better. Poor Rod, I must have been in a pretty sorry state.
I then had to see my boss as I had a previous appointment with him and left messages everywhere to find me immediately if Pru rang. She did moments after I had gone in to see him. I excused myself and did my best to explain everything quickly to her. Then I had to explain it briefly to the boss. He did not seem to react much – maybe he didn’t understand.
Having decided not to tell anyone, I found that I was telling everyone I met. Very strange. I did go back and explain to Rod, who said I should go straight home but I couldn’t see the point – life had to go on. We went off to Roke for a meeting in the afternoon but I have to confess that I did not make much of a contribution. I was glad to get home.
Dichotomy! One has a responsibility not to make matters worse for one’s family by leaning on them too much. However, one does need support and comfort from those around one. Getting the balance right between seeking support and not worrying dear ones is difficult. Pru had taken it upon herself to tell both the boys. That was thoughtful of her. I still had to tell my parents. My mother did not really take it all in but my father clearly did and his concern was actually quite hard to bear. I spent the next day worrying about them worrying about me!
The Christmas break followed. This was nine days long and although thoughts of the problem were always there, it was possible to forget it for some of the time. I got brave enough, after a couple of days, to surf the World Wide Web in pursuit of information on acoustic neuromas. I found a paper from a symposium in the USA in 1991, which was quite informative, although obviously seven years out of date. Some of the information was a bit scary – especially the bits about the potential side effects of surgery. Pru was very sceptical, quoting others who say there is a lot of misleading information on the web. Despite that I felt a bit better informed. I also discovered the existence of the British Acoustic Neuroma Association (BANA), a charitable support group.
Mark spent a few days with us over Christmas, returning to London on the Tuesday. We had enjoyed his brief double appearance on Auntie’s Christmas Bloomers on Christmas Day – all the more as he was with us to share the pleasure. He forgot to take some of his things back with him. As a result we drove up to deliver them to him on the Saturday, calling in on my parents on the way home. I expected and was prepared to have to answer a barrage of questions about my condition from them. However, the subject was studiously ignored. Pru was cross; I was somehow disappointed. I rang them when we got home to make them aware of my feelings. My Father was left feeling guilty – thinking that I felt that they had failed me in some way. He explained that he could not see the point in going over the subject as we could only speculate until I had seen my consultant again. I am not sure whether or not that was a subconscious excuse – maybe he just found it difficult to talk about it. Anyway, we "made it up" the following day.
Back To Work
I returned to work on the Monday. My first act was to call a colleague, Don Munro, who had undergone treatment for prostate cancer over the previous year and appeared to have beaten it. I felt that he might be able to help me understand how to deal with the dichotomy mentioned earlier. However, I got no answer from his phone. A couple of hours later I discovered that he was in hospital again, this time with leukaemia. My boss was clearly very upset about it as well! It rather put my little problem into context.
I decided to visit Don that afternoon. I was feeling a bit guilty; having been worried sick about myself and here was Don facing another life threatening challenge. He appeared pleased to see me but was clearly unwell. It appeared that he had been unwell before Christmas and ended up in A & E over Christmas. Luckily for him, the cancer consultant was in, did his blood tests himself and diagnosed leukaemia straight away. Don was taken straight into hospital to prepare for chemotherapy. He was very positive. His consultant was taking the view that he would beat it, no matter how long it took. Don was facing a minimum of six months in hospital, undergoing five cycles of chemotherapy. Maybe it was a bit selfish of me, but I felt better, knowing that my problem was tiny compared to his. Needless to say I did not confide in him about my situation. I met Don’s wife and son as I left and made some pretty inadequate offers of help.
I called the BANA. The lady who answered the phone was very helpful. She told me that the Professor at the London ENT hospital was called Professor Wright and that he had a good reputation. As a result I was sent a leaflet and a membership application form, seeking an annual fee of £12. The leaflet was quite helpful. It explained the problem quite simply. Seeing it all written down in black and white was a bit scary.
Choosing a Surgeon
I rang Philip Scott’s secretary on the Tuesday to see what was happening. Mr Scott had been away on holiday over the Christmas period and was due back on the Wednesday. He called me himself on the Wednesday to say that he had been trying to reach the Professor at the London ENT hospital over the holiday period but had failed but that he now expected to speak to him the following day. He promised to call me as soon as he had spoken to him.
He was true to his promise. He rang me to tell me that he had spoken to Professor Wright but that he did not appear to want to deal with my case himself, encouraging Mr Scott to refer me to Southampton, where I would find the skills to tackle the job as good as anywhere. I was a bit disappointed. Although Southampton would be much easier logistically, I had got used to the idea that I was going to be referred to the "best." Philip Scott offered to refer me to Anne Davis at Southampton, assuring me that if I was not happy, I could to go back to him for an alternative referral. He encouraged me to test her experience – "ask her how many hearing preservation operations she had done and how often does she does them"!
I made an appointment to see Anne Davis, through her secretary, straight away. She holds her consultations at Portsmouth and Chichester. I opted to go to Portsmouth (actually at Havant) on Friday 15 January, the first available date. Anne Davis rang me the day after I made the appointment, unaware that an appointment had already been made. She offered to make special arrangements to come to Southampton to see me, which was very thoughtful but I declined, happy to stick to the arrangements that had already been made.
A Bit of a Fright
I collected my MRI scans from the Nuffield, where I had consulted Mr Scott, the same day that I had made the appointment to see Anne Davis. When I got home I put them on one side. In the evening I decided I would be brave enough to look at them. I thought I might scan them into my personal computer for later reference. Looking at them was a bit scary and there was no way I could face up to scanning them into the computer. I could not understand them at all; and there were lots of them. Eventually, I looked at them to see which had been hand marked by the radiologist. I found one with a circle around a spot on a scan but it was in the centre of my head, not the left, where the neuroma was supposed to be. Horror of horrors, what on earth could this be? Then I found the scan showing the neuroma, on the left, as expected. It was at this point that I realised that the radiologist’s report was in the envelope with the scans. Should I read it? Well, I did and immediately regretted it. He reported an incidental finding of a benign pineal cyst, 16 mm in size. A follow up scan was recommended. Mr Scott had failed to mention this "incidental finding" to me. I was quite frightened.
Fortunately, I had Mr Scott’s home telephone number and rang him immediately. He told me that it was alright to have read the report but he had obviously forgotten that the report was in the envelope and was a little embarrassed about it. He told me that he believed I had had enough to cope with, without drawing him my attention to this other finding. He had taken advice from the radiologist, who had suggested that it was not of any consequence. Mr Scott did admit that it was outside his field but that he did not think it was anything to worry about. He also suggested that it was in a place where it was probably untreatable. Although I was superficially reassured, it prayed on my mind and had an uncomfortable and immediate laxative effect upon my digestive system!
Meeting My Consultant Surgeon
Pru accompanied me to the BUPA Hospital in Havant to see Anne Davis on the due date (15 January 1999). The hospital was clearly in the middle of some reorganisation, as the outpatients’ reception and waiting room were combined and rather cramped. There was no coffee machine – what a disaster, especially for Pru, who cannot go for much more than half an hour without a coffee! Anne Davis called us in fifteen minutes early – definitely a blessing. We spent an hour with her – probably twice our allotted time. She was a little "business like" to start with but I warmed to her as we progressed. She asked a series of diagnostic questions, looked in my ears, gave me a repeat hearing test, and consulted my MRI scans before discussing her diagnosis. The scans had not been carried out to her liking, "not really big enough" but then she had not commissioned them.
She confirmed the presence of an acoustic neuroma and the need to have it surgically removed. The rate of growth of neuromas is not fast but it can be erratic. If left alone for a year or more there would be a risk that it would grow enough to make its’ removal much more problematic. It was my perception that her preferred choice of route would be translabyrinthine as this would be the least risky, although it would entail the complete loss of hearing on the left side, coupled with the loss of the balance mechanism on that side as well.
I voiced my concern, prompted by Philip Scott’s comments on the need for consideration of hearing preservation surgery, about losing my hearing. She was rather dismissive, suggesting that the level of preservation was likely to be low and that the chances of success were only about fifty per cent. She pointed out that both the hearing preserving routes would involve moving the brain out of the way, which has attendant risks and that the risks to the facial nerve were greatly increased because of the difficulty of achieving a clear view of the relevant nerve during surgery. She was also a bit dismissive of Philip Scott, commenting that he was still young and lacked experience. She did however recommend that I undergo a hearing and balance test, coupled with a CT (computer tomography) scan. The former would establish the level of damage to my hearing on the left side, the quality of the hearing on my right side and identify whether or not any damage had yet been done to the balance nerve. The CT scan was to provide additional information to that provided by the MRI scan, particularly the physical layout of the bony structures around the neuroma and the alternative lines of approach to it. Both a decision, which I would have to take, based on a recommendation from Anne Davis, and the recommendation itself would have to wait until after these two diagnostic test had been completed.
Before we left, I asked her a series of questions, based on a list Pru and I had produced before we went. In fact she had already addressed most of our concerns but I did find out that I would not require intensive care afterwards. This was a relief, as old data on the Internet had misled me about this. I learned that the stay in hospital would be seven to ten days and that recuperation could be between one and two months. I also learned that I would have a spinal drain in my back for a couple of days after the operation – yuck! I asked her about the BANA. She was a bit dismissive, saying that they tended to be pessimistic, focusing on those who had problems, whereas most people coped and got on with life. She felt I was unlikely to need them.
I asked Anne Davis about the pineal cyst. She said that although it was not her area of specialisation, she did not think it was a cause for concern and would seek further advice.
Anne Davis arranged for me to have a CT scan at the Wessex Nuffield Hospital, where she was confident they would provide her with exactly what she wanted. She also arranged for me to have the hearing and balance tests at ISVR at Southampton University.
How did we feel after the consultation with Anne Davis? I think that I felt "better." I had a clearer understanding of what was likely to happen and that it was timeframed. With Anne Davis on holiday until 15 February, no further progress could be made until then, apart from carrying out the tests. We had also agreed to aim for a date around 16 April, subject to a decision on the surgical route. This gave me plenty of time to make arrangements at work for cover during my absence. My worries centred on my reluctance to agree to the destruction of my hearing unless it was proved to be absolutely necessary. Pru on the other hand was filled with horror at the thought of anything other than the simplest, least risky route for surgery and to hell with my hearing! The thought of my brain having to be "moved out of the way" made her distinctly squeamish.
Philip Scott had sowed the seed in my mind that hearing preserving surgery was a possibility; also that he suspected that the surgeons at Southampton were likely to prefer the translabyrinthine approach, because they were clearly well practised in it. About a week after our consultation with Anne Davis, I called him at home to sound him out about my perception that she seemed so much in favour of what I saw as destructive surgery. I wondered whether or not I should seek a second opinion. I feared that any surgeon would be naturally defensive if a patient asked for a second opinion. He was understanding and reassuring. He encouraged me to wait until Anne Davis had made a recommendation and assured me that it would be perfectly alright to ask for a second opinion if I was unhappy and that he would assist if necessary.
He commented that he and Anne Davis had discussed my case only the previous day. The specific point they discussed was my pineal cyst. She had seen a neurologist and sought his advice and he had confirmed that it was nothing about which to get alarmed. I felt much reassured both about the cyst and the whole situation.
The CT scan was arranged very quickly and we went to the Wessex Nuffield on 20 January, the day after my 54th birthday. It was a simple enough procedure. The machinery was much like a cut down version of the MRI scanner. The field of operation of the scanner was provided by a circular ring very much bigger in diameter than my head, so there was no sense of claustrophobia, although one’s positioning on a movable table was very similar. There was one key difference and that was that as the scan progressed, the table moved me physically through the field of operation created by the ring, albeit in very small steps, whereas in the MRI scanner the body stays stationary and presumably the field is moved instead. The whole process took about 30 minutes, after which we were offered a most welcome cup of tea, while we waited for the radiologist to check that he was satisfied. After another 30 minutes, by which time we were getting a bit irritated at the delay, we were ushered in to see the radiologist, Dr Millar. He showed us the scans on a large PC monitor and very impressive they looked. He again confirmed the diagnosis, commenting that the canal through which the left acoustic nerve passed was slightly enlarged. Before MRI scans were invented, this would have been the only way of confirming the diagnosis of an acoustic neuroma, without resorting to surgery. He offered to send the scans to Southampton for Anne Davis but I suggested that we would be happy to take them away and deliver them ourselves, as she was going to be on holiday until we saw her. This caused another delay, while the scans were transferred to film. Inspecting the scans on film told me nothing. It would be hard for the layman even to differentiate between the front and the back of the head, because the scans were of a limited section of the skull.
We went to Southampton University on 2 February, expecting to spend up to three hours there. In fact it only took an hour and a half. Pru was allowed to join me for the initial interview and the review of the results afterwards. The tests were divided into two parts, hearing and balance. The first test was similar to hearing tests I have had before. The headphones were different; comprising two matchbox sized boxes clipped to my pullover, with clear plastic tubes running from them to each ear, through an earplug. I had to press a button every time I could hear each of a series of tones. A variation on this theme was the use of a transducer clipped over my head, with the business end resting on the bone behind my left ear. Noise was added to the tones to which I was listening, at increasing volume.
I was then asked to repeat a series of words, as they were played to me through the headphones, at varying levels. I should point out that when each of these test was performed, I was closeted in a sound proofed room, with a window into an adjoining annex, where my consultant operated the equipment. I felt a bit of a fool, repeating these words and it required a high level of concentration to pick out the words as they got quieter. The test was punctuated by "this is word test number so and so" at the beginning and end of each list. Were you supposed to repeat that bit or not? Then after ten such word lists, taken in numerical order, one was missed out. One began to wonder what was in the missing list!
My eardrums were then pressure tested, using a piece of electronic gadgetry, with a CRT display. It proved that both my eardrums were intact and working properly. I was then given a test to check the performance of the cochlea. The ear was stimulated, using a tube and earplug, with a series of clicks. The mechanical response of the ear canal was recorded, this time on a PC colour monitor, giving frequency against amplitude information. This confirmed that my left ear hearing performance above 2 kHz had already been irreparably damaged, probably by the neuroma restricting the blood supply to the cochlea.
Then the fun really started with the balance tests. I was taken to another small room and made to stand on a small platform, with a semi-circular screen, about seven feet tall, about eighteen inches in front of me. I had a harness fitted to me in case I fell over. All I had to do was stand still while first the platform moved, then the screen moved and then both moved together, each at three levels of intensity. At the lowest level, the movement was hardly perceptible. At the most intense level, my toes were working hard to keep me upright. However, I believe that I demonstrated that there was nothing whatever wrong with my balance mechanism.
The final test was another check on the functionality of the balance nerve in each ear. I was taken to yet another small room and lay on a table, flat on my back, looking at the ceiling, from which a horizontal black bar was suspended. I had electrodes fitted, one to the centre of my forehead and one on each side of my face, just outside each eye. I was asked to move my eyes in response to the switching on in turn of each of three small red lights (LED’s) fitted in the bar above my head. This was used to calibrate the sensors attached to the electrodes, measuring my eye movements. Then my left ear was filled with a constant flow of hot water, a towel collecting the overflow. The purpose was to stimulate the balance nerve. It worked! My head swam and I was very glad to be lying down. I was asked to count out loud, in three’s. This was to focus my mind on something else but made me feel foolish. Can you count in three’s all the way to one hundred and be sure to get it right? The swimming feeling in my head passed but then we had to go through the same process all over again with my right ear. That balance nerve worked very well too!
During the review of the tests, my consultant confirmed that my hearing on my right side was very good. On the left, it was very good up to 2kHZ. Above that frequency it was pretty awful. My balance nerves and mechanism were excellent. In summary, it was my understanding that the hearing and balance capabilities I had were worth preserving, if there was a safe means of so doing. If there was not, then the performance of my right side would be good enough for me to have to rely upon it. I have since learned that the operation destroys the balance nerve in the side of the head where the neuroma is located, whichever route is taken. Fortunately the body has two balance nerves and part of the recuperation process is teaching the brain to make do with one.
Choosing the Route
Anne Davis returned from her holiday, to start work again on Monday 15 February. We had an appointment to see her at 5.45 p.m. that day. We arrived twenty minutes early, keen to finalise the arrangements. To our surprise we were invited in fifteen minutes early (again), as an earlier appointment had failed to show up. She was very bright and breezy, perhaps the effect of her holiday. She viewed the CT scans which we had brought with us and announced that the layout of the bony structures were conducive to both the hearing preservation routes. This was a bit of a surprise, as she had not seemed at all keen on hearing preservation surgery during our previous visit. She stated a preference for the posterior fossa rather than the middle fossa route, as brain retraction in the former was not an epilepsy risk. Despite the fact that it was two weeks since my hearing test at Southampton, she did not have the report. She therefore suggested that we should leave a final decision on the route until after she had read this report and offered to phone me at home on the Wednesday evening.
She told us that she had cleared her diary to perform the operation on 16 April and that the neurosurgeon, Glen Neil-Dwyer was also available, if we chose the posterior fossa route. He hails from the Caribbean and had to cope with considerable racial prejudice earlier on his career. Anne Davis believed that he must be good to have risen to his present seniority in such circumstances.
It all seemed to be over rather quickly and I re-opened the debate on the route. She then back-pedalled a bit and re-iterated her preference for the translabyrinthine route. She did, however, make it clear that it must be my decision.
We left, slightly disappointed that the absence of the hearing test results meant that we did not have a final resolution to the decision.
Anne Davis phoned me, as promised on the Wednesday evening. She confirmed that the hearing test had revealed that my hearing on the right was excellent and that my hearing on the left was fine up to 2 kHz but above that it was pretty useless. We discussed the two options, posterior fossa and translabyrinthine at some length. She tried hard not to influence me but it was clear that if she had to face my problem, she would opt for the latter. The table below tries to capture the risks and benefits of each route, as I perceived them from her comments.
|Facial palsy temporary||30%||60%|
|Facial palsy permanent||Negligible||?|
|Likelihood of recurrence||Negligible||2 - 5%|
I needed to make a decision, both for my sake and for Pru’s peace of mind. Based on the table, I opted for the translab route. However, Anne Davis assured me that I could change my mind during the next couple of weeks and that such a change of heart would be perfectly acceptable. In fact, when she realised that I had had a general anaesthetic the previous day, for the excision of a ganglion on my wrist, she insisted that I confirm my decision, after reflection, the following week. She encouraged me to discuss the decision with my GP. Having thought that I had made a decision, I now found that perhaps I had not!
The table below shows an attempt to score the factors affecting the decision. The importance column is scored by choosing a number between 1 and 10, 1 being unimportant, 10 being vital. The score column is a numerical interpretation of the likelihood that this problem will occur; therefore high is problematic. The product column is the product of the importance and score, so the lowest total "wins".
|Facial palsy temporary||5||30%||3||15||60%||6||30|
|Facial palsy permanent||10||Negligible||0||0||?||2||20|
|Likelihood of recurrence||10||Negligible||0||0||2 - 5%||1||10|
All the application of this process did was to emphasise how difficult it was to make the decision. Pru, my consultant and most others with whom I shared this problem reasoned that the translab route was the only sensible solution. However, I clung to the notion that the destruction of my hearing was vandalism. Although impaired, the performance of my left ear was consistent with the quality of sound one gets through a telephone, which seemed worth preserving to me.
Common sense did eventually prevail. Having met a number of people who professed to have overcome being deaf in one ear, I decided the sensible thing to do was to take the least risky option and accept the inevitable loss of hearing.
I called Anne Davis’ secretary the following week to ask her to confirm to Anne Davis that I had opted for the translab route. To my surprise Anne Davis called me two days later to say that she and Glen Neil-Dwyer had examined my scans together and come to the conclusion that the posterior fossa route really was a practicable option. I grumbled that the pendulum seemed to swing from one extreme to the other! She disagreed, saying that all she was doing was giving me the best advice that she could. She further ventured that I did not need to make up my mind until the night before the operation, when I would have the opportunity to talk to Glen Neil-Dwyer.
When I reported this to Pru, she was somewhat irritated. She had been pleased that I had decided on the least risky route and now the whole thing was back in the melting pot. She also felt very strongly that it would be crazy to decide at the last minute, at a time when I would probably be fairly stressed. It took me a little time to reach the same conclusion but, after a couple of days, I did.
I wrote a letter to Anne Davis, asking for help, indicating that I wanted to make a decision before I went in to hospital. I included a copy of my statistics table, asking for an update, suggesting that their view of the statistics might have changed, if they took into account the small size of my tumour. She phoned me at home early the next evening, missing me as I was still at work and offered an update of my statistics by post and the option of a further discussion with her on the phone the following week.
The update arrived two days later (13 March) and is shown below.
|Hearing Preservation||None||40 - 50%|
|Facial palsy temporary||30%||30%|
|Facial palsy permanent||Negligible||Negligible|
|Likelihood of recurrence||Negligible||2 - 5%|
So now the decision was really a simple choice between the small risk of a recurrence against the chance of retaining my hearing.
Needless to say I phoned Anne Davis the following week, on the 17 March, four weeks and two days before the operation. As you can see, I had started counting down! I had expected to engage her in a dialogue but all she said was that there was not much more to discuss – I had all the details now and it was up to me. I suppose I had really decided that the safest route was the most sensible option. Having met a number of people over the previous month or so who were either stone deaf in one ear themselves or knew someone else who was and all coped with the disability with little or no problems, what was I worrying about? So I confirmed that I had chosen the translab route. She confirmed that she was happy with my choice and that was it.
All I had to do now was wait for the clock to tick away. Anne Davis called me about a week later to warn me that there was small a risk of a delay. There was a shortage of nurses! However, she had told the hospital that she thought my case was relatively straightforward and therefore hoped that they would fit me in on the planned day. She told me that I would be called in about a week beforehand for some pre-operative checks and that she would like to see me herself at that time to sign the consent form.
In due course I was called in, exactly a week before the planned operation date, on Thursday 7 April. I was offered the choice of 8.00 a.m. or 12.00 p.m. I chose the earlier time, originally so that I could get back to work, although it did not work out like that. Pru and I arrived early, at 7.45 a.m. Finding our way around was a trial, the signposts were not very good and of course, because it was early, nobody seemed to be expecting us. Eventually we were parked in the ward day room and Ann Davis saw us at 8.15 a.m. She went through a description of the operation and I signed the consent form. She was both cheerful and reassuring. She guessed we would see the houseman in half an hour. About 45 minutes later, the admissions nurse appeared, commenting on how early we were and that she had to go to a meeting! To fill in time, I was sent of to donate some blood (four phials) for analysis. The admissions nurse returned from her meeting after another 30 minutes and I answered a series of questions about my state of health and my medical history. She took my temperature (using a glass thermometer, under the arm – not in the mouth for neuro patients!) and my blood pressure and a swab from my nose. The latter was to guard against people carrying "super bugs". After another 30 minutes I was seen by the houseman, who asked yet more questions, listened to my heart and chest and checked all my reflexes. We got away at about 11.30 a.m. It was a good thing that I had decided to take off the whole morning.
During the last week, time seemed to stand still. All I wanted was to be the other side of the operation, getting better. I went to Ilford, my newly acquired responsibility of barely one month, a factory of 300 souls. I gave the staff a briefing, in two sittings, about the change in direction and style that my appointment would bring to their activities. I also told them that I was going to be missing for a little while and why. I won the sympathy vote and came away with lots of warm feelings – they were not used to having a boss who was so "vulnerable". The feedback suggested that they thought I was a lot more "human" than my predecessor.
Editorial note: It was my intention to keep the diary going while in hospital and especially to keep the chronology going while it was still fresh in my memory. However, although I did feel well enough while in hospital one early morning to make some hand written notes which captured 12 April – 14 April, it was at least another four weeks before I made a serious attempt to bring the diary up to date. One casualty of this delay has been accuracy, especially of what happened when. My memory faded very quickly indeed.
My last two days at work, the Monday and Tuesday, were taken very gently, letting go in small steps. Things were complicated by the planned office move during my absence. Some time was spent clearing out old files and packing the things I wanted in my new location. I treated myself to a jog at the end of the Tuesday afternoon and felt pretty good.
I took the Wednesday as a day off. I left to pick up Giles from Heathrow at 7.15 am. Panic set in when the road signs and the radio advertised a hold up at the junction of the M3 and the M27. However, it had cleared by the time I arrived there. I telephoned Rod on the way to the airport. I had left him in charge during my absence and felt the need to make sure that he understood how lucky I felt at being able to leave things in such capable hands. I meant it too – and maybe he needed a vote of confidence to boost his self confidence.
I arrived at Heathrow in plenty of time, at 9.10 am. Giles flight was due in at 9.45 but the indicator board suggested that it would be a few minutes late. This was corrected minutes later, indicating that he had landed at 9.23 am. The waiting area was crowded with reporters and photographers. I learned that a flight into Singapore had hit clear air turbulence and had dropped like a stone, with food going everywhere and passengers literally hitting the ceiling. The continuation of that flight was due in any minute and the press were there to gather the stories. I later learned that Tony Blair’s daughter had been on the fated flight, which added to the press interest. No-one appeared to have been critically injured.
Giles duly appeared at about 9.50 am, having had a reasonable flight from Washington. What a handsome, clean cut young man he looked! I had not seen him since our holiday in Washington, the previous September.
Giles had brought with him, at my request a new Pentium P233MMX processor and a new V90 modem card. While he went to bed to catch up on sleep, I indulged in a little computer update. The processor worked second time and the new modem worked very well, after some minor finger trouble. Giles had downloaded the latest set of drivers for the modem and it took me a moment or two to understand how to use them. Anyway, I now had internet access at one and a half time the previous speed and my processor speed increase would provide better video camera performance.
After lunch Pru asked my to sweep up the drive – this would be the last opportunity for me to do so for some while. This I did with rather bad grace – how selfish! The Flymo vacuum machine broke in the middle of this exercise. My temper boiled as I envisioned having to fork out £60 to £100 for a new machine. When I took it to bits, I discovered that the fan was supported on large a hollow pillar which had all but disintegrated. However, there were two holes in the collar around the fan and a couple of small short pillars mounted in the body of the machine into which self tapping screws could be inserted, which provided an alternative mounting arrangement. This worked and my temper returned to normal.
I then had to rush off to pick Mark up from Southampton Parkway. He had a break in filming for the BBC and had decided to join in the fun of supporting his Mother while I was in hospital.
Although Anne Davis had said that I need not get my hair cut, I had decided that a short hair cut would be much easier to manage while in hospital. So the previous weekend I had a number three, which left my hair only a few millimetres long, all over! It is strange to tell but my new short haircut had two more fans – both sons approved. We enjoyed a cup of tea and a sticky bun. This was the first I had consumed for about four weeks. I was determined to be both fit and slim in time for the operation and had slimmed away nearly a stone during the preceding month.
I asked for volunteers to join me a last jog and Mark obliged. We took it very gently but as I normally run for 100 metres and then walk for 50 metres, I was amazed to find that I covered the first mile without the need to walk at all and only walked five times during the whole of the three mile jog. I felt really great at the end of it and so did Mark.
Supper was a real family affair, the first time all four of us had sat down together for ages and I found it a great comfort. "The condemned man ate and enjoyed a hearty meal." Anne Davis telephoned to confirm that all was well and to enquire how I would feel if the BBC chose to film my operation. This was a strange coincidence - only minutes before, the boys and I had been discussing whether or not the operation would be video recorded. I readily agreed. After all, not many people who undergo surgery have the privilege of seeing what has been done to them.
I finalised our domestic accounts and coached Giles on both my accounts and all those things he needed to know, just in case I did not return. Maybe this was a bit over dramatic but I did not want to leave any loose ends, just in case. The evening flashed past and I realised I had not been giving Pru all the attention she deserved and tried to make up for it before we went to sleep.
Day Zero Thursday 15 April - Admission Day
We treated the day a bit like a normal Saturday. Pru and I went into Ringwood to do a little shopping and to have a coffee and a cake. When we returned I rang the hospital to confirm that there was a room for me. The line was busy for ages but eventually I got through and shared the fact that we had a "go" decision from the hospital with the rest of the family.
I was supposed to arrive promptly at 12.00 p.m. and left with plenty of time in hand. However, we did not allow for a major road accident on the M271, which was therefore closed. We had to make a detour and arrived about five minutes late. We were taken upstairs to the Ward C Neuro day room and were then completely ignored for over an hour! I decided to try and find out what was happening. I was greeted in a very surly manner by someone in the ward but I did at least learn where I was going to stay. This was a single bed side ward, presumably a benefit of private health care. Eventually we were told that we could go and get ourselves some lunch as no-one was likely to want to see me for some time. We availed ourselves of the snack bar in the main entrance corridor – large crusty filled bread sticks all round.
We returned to the ward. Sue McDermott from the BBC South City Hospital team came and introduced herself and checked that I was happy to be filmed. She explained that the presenter Nick Knowles would come and have a chat about the interview, to put me at my ease and to explain what he expected to do. The plan was to film me with the family at 4 p.m., so they rushed off home, expecting to return in time for the interview. A doctor came round and checked me out, repeating many of the questions I had been asked the previous week. I managed to read a whole novel during the afternoon! Sue then phoned to say that there had been a change in plan. The BBC wanted to include Anne Davis in the interview and the only time she would be available would be in the morning, just before the operation. Needless to say, that would be too early for the family to join in. I phoned home, using my mobile phone, with the news that they were not to be offered starring parts after all and that they did not need to rush back.
Pru, Giles and Mark arrived with flowers and a home-made "we love you" card, made by the boys, using a combination of computer wizardry and Mark’s Polaroid camera. It had kept them occupied during the afternoon and was a wonderful "cheer-up" for me. I felt quite relaxed and just a little excited about appearing on television. Saying "Goodbye" to the family was not easy. I knew I would not see them again until after the operation, assuming I survived. I made sure to tell each of them that I loved them – a bit sloppy but it was a sloppy moment.
The anaesthetist paid me a visit. He was very re-assuring. I recounted the unpleasant experience I had had some eight weeks previously. I had gone into hospital to have a ganglion removed from my wrist, hoping to have a local anaesthetic. However, it did not work and I had to be given a light general. Unfortunately, I emptied the contents of my stomach during the operation, causing a little drama for all concerned, except me. They had to put a tube down my throat very quickly, which meant using a muscle relaxant.. The side effects of this were a very sore throat and several days feeling as if I had been kicked by a donkey, particularly across my chest and back. Going to the toilet was a major problem; any effort to "push" was rewarded with great discomfort. He assured that this would not happen this time and that modern anaesthetics were very safe, with a very low mortality rate! We agreed that I would not have a pre-med as he didn’t really believe in them and I wanted to be reasonably alert while being filmed!
I used the statistics provided by my surgeon to help me decide the route by which my neuroma should be removed. However, I never asked my surgeon about the mortality statistics. There did not seem any point. If there is only a 1% chance of not surviving, it makes no difference if you happen to be in the 1%. After all, only 10% of people who want a local for the excision of a ganglion are unable to do so and only 1% of people throw up on the operating table. In both cases I fell into the wrong category. I have since learned that the mortality rates for the removal of an acoustic neuroma are now less than 2 in a thousand, so my more morbid moments were really inappropriate! Twenty years ago, the statistics were much less favourable.
I remember nothing of that night, so I must have been OK.
Day One, Friday, 16 April – the day of the operation
I was woken early and prepared for the operation. I had to don one of those awful gowns that are supposed to do up at the back – mine was missing one of the ties. Anne Davis appeared and double checked that I understood what was going to be done and that I would lose both my hearing and balance on my left side. She checked that I was happy about being filmed. As she was about to mark below the appropriate ear with a marker pen to avoid the possibility of error (for my benefit or hers?), Nick Knowles and the crew (sound and cameraman) arrived and briefly discussed what they planned to do. The interview only lasted for a few minutes and included Anne drawing a large arrow on my neck pointing at the correct (my left) ear. The crew were very friendly and made me feel that they were interested in me as a person, not just as an object for the programme. Within moments of their departure I was taken along to the preparation room. There I was transferred from my bed to a trolley. I protested that I was capable of moving myself but they would have none of it. I was asked to cross my hands across my chest as they moved me. We joked that I should not stay in that position – far too morbid!
The anaesthetist appeared. He fitted a small tube to the back of my left hand. A few seconds of feeling the anaesthetic enter my hand, cold and a little unpleasant and the lights went out! There was no time to dwell on one’s mortality.
I awoke in the recovery room, dimly aware of Anne Davis talking to me. She told how well everything had gone. I am sure she filled in some detail but that faded from my memory very quickly. I remember the clock on the wall – perhaps I should say clocks, because I had horizontal double, if not treble, vision for a little while. I don’t remember being taken into the intensive care section of the neurological ward but when I became aware of my surroundings I was in a section of about five beds. Each patient was monitored constantly by machine and by nursing staff every 30 minutes.
The ritual was the same each time. Blood pressure, pulse rate, blood oxygen and body temperature were noted. Each patient was asked a series of questions including:
Where are you?
What day is it?
What month is it?
Who is the Prime Minister?
We were then asked to squeeze the nurse’s fingers as tightly as possible, demonstrate that we could, against the nurse’s hands, push and pull with our arms and feet and press up with our knees. Presumably all these checks were important indicators of the absence of any complications. As a result, there was never any peace. It took quite a while to go round everyone and no sooner had they finished than it was time to start all over again. Most of the other patients were fairly passive but there was a young girl opposite who kicked up a frightful din. Her parents were with her much of the time and also a young man who may have been her husband – although from her behaviour one doubted that she was old enough to be married. She hated being disturbed and did not seem to understand the need for the intensive monitoring. She cried and whinged almost constantly and was most uncooperative when being checked over.
Rosslyn, do you know where you are?
Rosslyn, do you know where you are?
Leave me alone!
Rosslyn, I’m sorry we have to do this – but do you know where you are?
One should not laugh at the discomfort of others but that was really quite funny at the time. My stock answer to the question "where are you?" was to recite the litany "Wessex Neurological Unit, Southampton General Hospital". What a show-off!
When I was aware enough to take note of my surroundings I discovered that: I was attached to a drip, through a canula in my left wrist; I had a large dressing around but not over my left ear; I had a dressing on my abdomen, which had a short tube attached to a small cylindrical bellows shaped container (with a little blood in it) coming out of it; I had a very long, fine tube attached to a small bag which lay in the bed clothes, coming from a dressing in the small of my back. To my delight, a search of my nether regions revealed that I did not have a catheter fitted.
Later, I was offered one of those horrible cardboard bottle shaped containers. Now I am one of those people who have difficulty passing water in a public convenience, when surrounded by others. It is nothing to do with being shy. The tap just refuses to function under these circumstances. The idea that I might be able to pass water when lying down in bed into a cardboard container, even on my own, is laughable. I tried and failed. This was despite the fact that I now needed to go. I was threatened with a catheter but this particular mechanism is not under conscious control, so the threat was to no avail.
The family came to visit me early that the evening. When they arrived, they asked for Hugh Letheren and were told that he had just been discharged! There was even a white board on the wall which confirmed this view. Pru informed them that as her husband had had a brain tumour removed that morning this was rather unlikely. They were eventually shown into the intensive care area of the ward and found me sleeping. I was awoken with a kiss. It was an enormous pleasure to see all three of them. They stayed for about fifteen minutes, of which I remember very little.
My failure to pass water meant that a catheter became essential. A doctor was called to insert the device; not a very pleasant experience. It did not seem to completely relieve the discomfort of needing to pass water.
Day Two, Saturday, 17 April – Sitting Up
The following morning my drip was removed and I was transferred into another single bed ward, which became my home until I was discharged. I was invited to change into pyjamas, having had my gown removed but preferred to stay "au naturale"! I do not normally wear pyjamas and I suppose it was one of the advantages of a private ward that I could get away without wearing anything. I tried wearing a light dressing gown later but it had long sleeves which got in the way. Most of the time I wore just a short sleeved shirt, which was both comfortable and gave an air of respectability.
Two nurses came and sat me up. This was a major milestone for me and it was only the second day. A charming young physiotherapist came and listened to my chest and declared it to be better than hers. She said that she would be back the following day and thereafter to get me up and about.
The family came to visit and rescued my flowers from the private ward I had been in at the beginning and put up my cards. I was and still am overwhelmed by the number and nature of the cards I received. Taking over a factory of three hundred souls a month before certainly helped but the number of people who made the effort to send individual cards and the large numbers of people who went out of their way to sign the group cards brought a lump to my throat. They really did mean something special to me and continued to give me pleasure throughout my period of convalescence. The sending of cards seemed to be paced, so that I was still getting cards two weeks after the operation.
I am sure Pru was delighted to have the two boys staying with her while I was in hospital. However, it did put an extra burden on her, having to run the household with two extra mouths to feed and "manage" as well as the hospital visiting. On top of that, family, friends and colleagues were telephoning Pru at home for progress reports. While one would have been devastated not to have had people calling, there were times when it all became a bit much for her. One evening it took nearly an hour to prepare vegetables for their meal because every time she put the phone down, somebody else called. For future reference, we shall need to organise family and friends by suggesting a suitable time for requesting progress reports!
That evening I was presented with a four course meal! Later I was to discover that one of the key benefits of private care was the catering facilities. I had an enormous menu from which to select my meals, one day in advance. However, this process had not yet started, so this meal had been chosen for me, including a smoked salmon starter. I regret to report that I turned it all away. I could not face eating anything at all. I was drinking. I was being encouraged to drink as much as possible and was doing very well, what with glasses of water and regular cups of tea, provided by the tea girl, at what seemed like two hourly intervals.
I had not been allowed to use my mobile phone in the intensive care section of the ward for fear of interference with the monitoring equipment. Now that I was in a side ward some distance from intensive care, I was again allowed to use the mobile phone. It probably seems a bit silly but it provided me with both a psychological and a real link with home. Pru would confirm her safe arrival home after visiting and I knew that I could call if I had the need. Not all the ward staff were clear about the rules – I was well and truly told off by one young male nurse for using the phone. He returned with a very sheepish apology when he had checked it out following my robust protestations.
Day Three, Sunday 18 April – my first steps
First thing in the morning I was encouraged to wash, sitting in bed with a bowl of water beside me. I was left alone to cope, which was probably a good thing. I even shaved using my electric razor, those bits which I could reach, which made me feel very much better.
I was offered breakfast and stupidly chose cornflakes and toast. Both were a disaster. I could swallow neither but I was not hungry anyway. I had to choose lunch and again stupidly chose "meat and two veg." Eventually I realised that one should eat only those things that you felt like, irrespective of what you might think was a good diet. I lived on porridge, ice cream and jelly, and rice pudding for at least three days!
It was suggested that my catheter could come out but the bag seemed to be filling at an alarming rate. Maybe this was the effect of sitting up! Eventually the flow did stop and some time later the catheter was removed. This time the deed was done by a female nurse. Again, this was not much fun but the tube seemed shorter coming out than it did going in.
My physiotherapist got me up and out of bed and walking to the en suite bathroom. I saw myself in the mirror for the first time – not a pretty sight. I was pretty giddy but did not fall over. I felt I was making good progress.
I was concerned about passing water. I drank like mad and tried often but to no avail. I tried standing up, sitting down, thinking of Victoria Falls, the Ronnie Barker hosepipe sketch, all to no avail!
I phoned my parents in the afternoon. They were amazed that it was possible for me to call them and thrilled that I was well enough to do so. Their obvious pleasure gave me a real lift. It’s strange but people imagine that if you are in hospital, you must be incapable of communicating with the outside world.
Anne Davis popped in to see me in the early evening. She was casually dressed and had spent most of the weekend sailing. We chatted for a bit – she thought that I was doing very well and that I should be able to go home on either Thursday or Friday. I commented on my waterworks problem and she told me not to worry. She opined that worrying about it was probably the problem. She was right of course, I went half an hour after she left – what a blessed relief!
Day Four, Monday 19 April – down the corridor
I was well enough to wash myself from top to toe in the bathroom (actually a shower room to be precise) and could now wet shave, avoiding the bandage around my ear; another important step towards normality.
Doctors’ rounds took place every morning between eight and nine. The senior houseman led the team that day and he declared that I could expect to go home around Saturday. This was a disappointing difference of opinion with what Anne Davis had said but I decided that discretion was the better part of valour and kept my peace.
My physiotherapist took me for a walk down the corridor in the morning and we ventured even further in the afternoon. I needed a wide avenue down which to walk, as I would veer off a bit about every fifth or sixth step. To minimise this effect I walked with my feet wide apart.
During the family visit in the afternoon, they were expelled for a few minutes while the bandage around my ear was removed. This revealed the staples which had been used to close the wound, giving a rather gruesome effect.
It was about this time that I noticed a very strange effect. I knew that my hearing on my left had been completely destroyed by the operation. However, my brain still produced sensations akin to sound on that side. Most of the time it was just like tinnitus, a noise-like sound. However, when I banged my glass on the table on my right, initially by accident, I not only heard the sound of the bang in my right ear but also the sound of a ricochet in my left. This effect lessened as time went by but still persisted weeks later. The brain behaves in a very strange manner!
Day Five, Tuesday 20 April – fresh air at last
I could shave properly now, going rather gingerly near my ear. I could also feel the staples with my fingers, although I could not really see them properly. The tube attached to the dressing on my abdomen had fallen out and the tube attached to my back was removed. It felt as if some glue was put over the exit. The dressing was left in place and was rather irksome as it tended to get peeled up by the movements of my back against the bed.
I spent the whole day and thereafter dressed normally in a sports shirt and trousers, mainly sitting on top of the bed covers.
Mark had decided to return to his home in London and Giles went up to town with him to spend a day in "the big smoke". When Pru came to see me in the afternoon, it was rather nice to have her all to myself. With the encouragement of my physiotherapist, we ventured together all the way to the front door of the hospital. This was some one hundred yards from the ward, so it was quite an adventure. I enjoyed a breath of fresh air, although it was tainted by the gaggle of smokers, including patients, who huddled around the door, despite the rules to the contrary. I felt a bit peculiar, knowing that I was not a pretty sight but no-one seemed to take much notice.
I had been given medication on a regular basis, to stop me feeling sick, to suppress the giddy feeling and pain killers, the latter either as pills or as injections. The pain killers were available nearly on demand. I soon learned that the injections were effective much more quickly than the pills. I was encouraged only to take pain killers when I needed them which led to all sorts of problems. There is a male macho thing which encourages one to avoid taking pain killers unless they are absolutely necessary – which is really stupid. Pain killer are there to kill pain! There was another related problem. I was aware of two major drug rounds, one in the morning and one last thing at night. It was usual to be asked whether or not you needed any pain killers, with the comment " you can ask for them anytime". I am sure the staff believed this to be true but you had to pick your time with care. On a couple of occasions I refused pain killers, knowing that I would be alright for another half an hour or so. Then, half an hour later I asked. Because the drug round was far from finished, I had to wait until an appropriate body was available to dispense what I needed. On one occasion this was two hours later. Eventually I learned to accept what was available there and then, rather than risk being left in considerable discomfort for an extended period. During the afternoon and at night, quiet periods for the ward, the nursing staff were much more responsive!
Towards the end of the day the BBC TV City Hospital Team came to record a follow up interview – how the patient was doing after the operation. They came in and recorded their standard three and a half minutes but had to do some of it again to get the camera angles right and to overcome some extraneous noises. By the time they had finished I was very tired. I came close to telling the crew that I had had enough. It was later decided not to broadcast this interview as there was not enough programme time and they wanted a "real time" interview when the show went out on Friday morning.
The Neurological Unit had provided us with a booklet on Acoustic Neuromas and their treatment before I was admitted. It was enormously helpful, providing information on what was going to be done, how long it would take, the side effects and the after effects. So, when I woke up in the middle of the night, feeling as if someone had thrown sand in my left eye, I knew that this was because my left eye was drying up. This is caused by the eyelid not closing properly or the tear duct failing to perform adequately. It is easy to treat by putting drops of sterilised water in the eye, as often as is necessary. I asked for and was given the necessary palliative and went back to sleep. I needed to put drops in my eye on the odd occasion for the next week or so.
Day Six, Wednesday 21 April – two colleagues visit
Miss Lang, one of the consultants, led doctors’ rounds and the subject of my discharge date came up. I took my courage in both hands and shared with her the different advice I had been given by Anne Davis and her senior houseman. He looked a little embarrassed and I apologised. Miss Lang suggested Friday as a compromise!
I ventured out on my own, enjoying the freedom to walk to the front door of the hospital and watch the scurrying hordes on their way in and out of the hospital.
I was looking forward to having my staples out. This was fed by at least two nurses who separately said they wanted to do the deed. However, they and I were told that they had to stay in for a week, so Thursday was the earliest they could come out.
In addition to an early afternoon visit from Pru and Giles, two colleagues from work came to see me in the late afternoon. I think they were surprised at how well I looked and how mobile I was. We avoided the subject of work itself and I enjoyed their visit immensely.
My waterworks were working overtime, especially at night. I was being woken up at least every hour by the need to pass water. However, the other half of the waste disposal system had not functioned since the day before I had been admitted. As I am a regular twice-a-day person, this was a worry. It was caused by the painkillers. Anything containing codeine brings my system to standstill. I was given a magic cocktail which was guaranteed to solve the problem the following morning. It failed.
Day Seven, Thursday 22 April - Anne Davis visits
Anne Davis came to see me at 8.20 am. She confirmed that I could go home the following day. She had heard about the difference in opinion about my discharge date and commented that medical staff always err on the side of caution and fail to understand how important it is to the patient for some patients to get home. She was very bright and breezy and chatty – she was clearly thrilled with her bright shiny BMW!. She gave me a long lecture about not doing to much when I got home and insisted that I take a two hour rest in the middle of every day! She confirmed that she was happy for the BBC to conduct a third interview and apologised for not being available herself. She promised to call me at home in a few days time to see how I was. (This must have slipped her mind, as she failed to keep that promise!) She invited me to see her again in about four weeks time and I volunteered to go to Portsmouth, which she seemed to prefer. I shared my concern over my over-active waterworks with her and she suggested I might have mild prostatitis. She suggested a visit to my GP to get some antibiotics if it failed to clear up.
I still had some lurking concern about the incidental finding of a pineal cyst which had been reported when my MRI scan revealed my acoustic neuroma. I voiced that concern again to Anne Davis and she repeated her advice that it was nothing to worry about. She added that this would be further proved when I had a follow up MRI scan in three years time. Later in the day I met her in the corridor, all gowned up from the operating theatre. She had clearly discussed my concern again with one of the neurosurgeons who had told her that these cysts are found in 20% of all cases and that my finding was "truly incidental".
I went for a walk outside, enjoying the rose garden, a little way from the front door of the hospital. As I was about to return, I met Nick Knowles, the BBC TV presenter and a member of his team and we stopped and had quite a long chat.
I asked the nursing staff if I could have a shower, which meant covering up the dressings on my abdomen and back but despite an affirmative response, no-one managed to find the time to deal with my dressings. I also anticipated having my staples removed but I was disappointed again.
That evening I was given another cocktail to get my waste disposal system going.
Day Eight, Friday 23 April – City Hospital live and "homeward bound"
The previous night’s cocktail had again failed to produce any results. A nurse started muttering about enemas which did not thrill me. She applied a finger to investigate my back passage and announced that this might help move things along. Ten minutes later, to my great relief, it did.
This was my last day and I was excited at the prospect of going home. The first member of the TV crew turned up at 9 o’clock. He dragged cables in through the window, which were muddy! He then proceeded to wheel in a trolley of sound gear and started connecting up. The rest of the team arrived, the cameraman and a floor manager. Sister Julia made a brief appearance and played the dragon lady, to their dismay. After that, we saw not a sign of any medical staff for the next three and a half hours. Clearly my nursing staff were not all enthusiastic about appearing on television themselves. There was much coming and going and running repairs to cables and connectors were attempted.
Eventually everything was set up and I chatted to the crew. All of them were self employed and it provided me with an opportunity to pick up some advice on income tax and national insurance contributions for the self employed which will be of value in advising Mark.
The TV camera was a revelation. It was hand held, at below waist height, with a view finder on top. The lens end had a square flare on it, so that as you faced the lens, you could see a mirror which could present a picture to you as you were being filmed. This could either be a teleprompt or video. The camera man appeared to be able to call up video at will from the control van, miles away. I was shown the film that they were going to broadcast of my operation, including the removal of the tumour.
Pru arrived soon after ten o’clock, looking smashing, ready for her TV debut. Nick came in and we went through what he planned to do, arranging the room so that the camera man could capture the right angles. Unlike my previous two interviews, this one was going to be live, so there were to be no second chances. We watched the programme go out live on the television in my room. Then it was our turn and of course, it was all over in a moment – well the standard three and half minutes!
The crew again made a point of making us feel like people rather than television fodder. They cleared up their equipment and left, leaving a few muddy marks where the cables had been.
Pru left to take Giles out for a promised cream tea and I eagerly awaited the point when I would be allowed home. After lunch, my staples were removed. I had got the impression that this was going to be a major event. In psychological terms, for me, it was. However, the actual event only took a few moments. A nurse arrived and proceed to unwrap what looked like some scissors and used them to remove the staples, one at a time. All but a couple of them were fairly painless, including the ones in my abdomen. I rushed off to have a shower, which was truly wonderful, although I managed to spray shampoo into my left eye, which was already rather sore.
After the shower, I had to wait until I was given my medication to take home before I could call Pru to let her know that she could pick me up when she was ready. At one stage it appeared that I might have to wait two hours for the medication package but in fact it arrived in the hour. I packed and cleared my room, throwing out the flowers that I had been sent. They were not fresh enough to take home and would have been a pain for the ward staff if left behind. I also cleaned up the floor from the muddy cables, feeling very noble!
Pru and Giles arrived and we went home – hooray!
Some Thoughts on a Spell in Hospital
My memory of those eight days faded very quickly. I am told I was not "me", especially during the first few days. I know that my spirits soared and plunged with great rapidity, for very little reason. My family had the misfortune to catch me "down" two or three times running, which was not fair on them and gave them a distorted perspective. However, I was not much fun to visit! The trouble with hospital is that one has plenty of time on one’s hands and lots of bits hurt. This is a recipe for becoming alarmingly self centred, short tempered and generally a bit of a pain. One likes to think of oneself as a cheerful stoic but I came nowhere near that worthy target. The ward was short staffed, as I had been warned. Most of those on duty were superb most of the time. There were lapses but most could be excused because of the staffing levels. Cards and flowers did make a big difference. Visits and telephone calls were eagerly awaited and enjoyed immensely.
Pain and Medication
I was given anti sickness pills, anti-dizzy pills and pain killing injections at regular intervals for the first few days. I was very dizzy, especially when up and about but did not suffer much from nausea. Headaches were a problem, the pain lying in a vertical plane, behind my left eye, stretching to the back of my head. Pain killers kept this under control most of the time although there was a limit to the number I could be given in a given time. At first, the pain returned well in advance of the next scheduled dose. However, that did get better to the point where I was refusing the next dose and then regretting it half an hour later!
Clothing I discovered that a light, short-sleeved shirt was the most comfortable attire. I hate pyjamas and a light dressing gown with long sleeves was uncomfortable.
Schedule It pays to learn the ward schedule as quickly as possible. Hospitals are run for the convenience of the staff, not the patients. It pays to be in the right place at the right time, especially during doctors’ rounds. Do not ask for some small task to be done for you either during doctors’ rounds, during the medication round or when meals are being distributed. Try and pick a quiet moment These are periods when all the staff, probably quite rightly, are much too busy to deal with patients.
Pain Do not be a martyr. If it hurts, ask for medication. Pain does not aid recuperation.
Food Do not expect to eat a normal diet. Eat only what you fancy and do not be surprised if that is ice cream and jelly. Toast, cereals (except porridge) and meat are particularly difficult to eat after an operation.
Recuperation at home, the first few weeks
It was a joy to be a home. It was really wonderful to be able to have a bath. During the first couple of days I was frozen. I wore two jumpers and had the heating turned up to the point where everyone else was undressing. I am not sure why this happened but it did pass. Although we got up a bit later than usual, we tried to lead a fairly normal life. I got up and dressed as normal.
My first walk was just round St Ives Wood, the road in which I live. I made somewhat unsteady progress but managed a circuit for about twenty minutes. I repeated this every day during the first week and discovered a lot more about the area in which I live. It is amazing how much you miss when your normal means of transport is a car.
Pru and I went shopping in Ringwood most days. She drove and I found being driven no worse than usual! I was conscious that I wasn't quite ready to drive yet. Frequent turning of the head gave rise to giddiness.
I had a tendency to cat nap a couple of times during the day. I would just doze off and wake up twenty minutes later, feeling fine. Day time television occupied some of my time but the quality of day time programming left a little to be desired. Watching the snooker was a pleasant diversion. I found I could compute quite early on, although half an hour was about my limit.
Dr Thompson had been my GP since we moved to Ringwood. He had been particularly helpful with one a problem from which I had suffered early on but both Pru and I found him lacking; he didn't seem to be very thorough. For some reason he was not available when I had my first post operative follow up and I saw Dr Nigel Shield instead. He commented that he, rather than Dr Thompson, was actually my GP, according to their documentation. Well, he certainly is now. I found him very down to earth, straightforward to the point of being blunt and very, very thorough. He seemed to know what he was talking about and checked me over thoroughly. He demanded regular visits and I saw him nearly every two weeks.
Soon after my return home, I received a bouquet of flowers and an enormous hamper, which included a bottle of vintage port and some stilton and a card signed by my peers and boss. Now I know that these were fixed by Elaine, my boss's secretary but it still made an enormous impression on me. It gave me a considerable lift. Several of my colleagues phoned to see how I was and three of them, Rod Armstrong, Rupert Short and Dave Young came to see me at home. It's a bit soppy but that visit gave me a real high. We should all remember just how much a visit can mean to someone who is unwell!
I received loads of cards from family, friends and colleagues at work. I was overwhelmed by the number of cards from work. They arrived spread over at least a four week period - this wasn't orchestrated, it just happened that way but it did mean that there was a new thrill nearly every day. Each and every one was treasured, especially those with multiple signatures and those from people who really didn't know me at all well. It was wonderful to feel so cared about. Even my boss made the effort to come and see me and again, this was much appreciated.
By the end of the second week at home, my headaches had virtually gone and I no longer felt the need of any medication. I had the feeling that the anti-dizzy pills I was taking were actually making me feel dizzy, so stopped taking them too. I got more adventurous, walking nearly all the way into Ringwood, about a mile each way.
After three weeks, I tried driving the car. It was still unpleasant moving my head from side to side repeatedly but I found driving better than being driven; it was probably being in control of the motion. This was a significant step forward.
Anne Davis Consultation, Monday 24 May
Anne Davis changed the date of my post operative follow-up consultation as she had to "do an acoustic" on Friday 21 May. We saw her instead on Monday 24 May at 7.20 p.m., at the Portsmouth BUPA Hospital. I was concerned that with such a late appointment she would be in a hurry. However, she was very relaxed and she was quite happy to answer all my questions. She was pleased with my progress but encouraged me to take a week more than I intended before making a gentle return to work. Pru and I complimented on her performance on video and she asked if she could have a copy! During the filming, when she was fitting the Mayfield clamp (to hold my head securely) she had said, on camera, "this isn’t right, stop filming". I asked her why. She said that the clamp digs into the skin in three places and removing it and re-seating it causes profuse bleeding, which she did not think would look good on television!
She looked at my back as I had commented on some tenderness there. She assured me that it looked fine and that the tenderness would go. She then checked my abdominal scar, commenting that it was still a bit bumpy. She seemed quite happy that I had started driving a week previously.
I then went through my list of questions. She said that she would chase up the histology report. This should have confirmed that what was taken out really was a benign neuroma. As the report had already been paid for, it was not unreasonable to ask for its contents! She also agreed to arrange to have my MRI and CT scans sent to me, as they belonged to me.
I sought an explanation of the anatomy of the area where the tumour was, especially of the layout as seen on screen when the tumour was excised. She drew me a little diagram but it still remained a bit of a mystery. I resolved to take a picture captured from the video on my next visit, in the hope that this will make it easier to understand the explanation. I asked whether or not my ear canal was now a blind tube. She told me that I still had an eardrum and one of the connecting bones, illustrating her explanation with a model cross section of an ear, conveniently available on her desk. I knew that one of the connecting bones, the incus, had been removed because it was shown in the video of the operation. I joked that it would have been a nice memento to keep but presumed that it had been disposed of. She confirmed that this was the case and offered me another one which I declined. Well, it would not have been mine, wouldn’t it?
I asked when I could start jogging and she said it was really up to me but certainly after I was able to undertake a brisk walk without getting tired. She suggested swimming as a good form of exercise.
She said that I would have a follow up MRI scan in three years time, although in my case it was probably unnecessary but it was something they do as a matter of course. She asked me to come back for a final consultation at the end of September.
Pru and I left, feeling good, having thanked her for all that she had done for me.
Recuperation and returning to work
Before I left work in mid April, I had completed entries in my electronic diary, for all to see, which suggested that I would return to work part time after six weeks and return full time after two months! I was trying hard to think positively.
On Thursday 27 May, nearly six weeks after the operation, one of my colleagues, Richard Jones was celebrating his early retirement with a lunch time party. It seemed a good opportunity to show my face at work and bid him farewell. I arrived in the middle of the morning and had a look round. My office had been moved and restyled in my absence - all glass walls and no door, complete with potted palms! It is normal at these retirement parties for the retiree's boss to say a few words and make a presentation on behalf of all the gathered colleagues. For some reason, my boss was unavailable and someone thought it would be a good idea if I stood in for him. It seemed a daft idea but it was an opportunity for me to demonstrate that I was on the road to recovery, so I agreed. There was a bit of rushing around, collecting suitable embarrassing material but in the end it all went reasonably well. Richard seemed very appreciative and it certainly added to the emotion of the moment.
I started work part time the following week. On the Tuesday there was a management meeting, which was planned to go on all day but I went, expecting to leave at lunch time. I actually left at 4 pm and it was clearly a mistake. I was worn out and although nobody had the sense to tell me at the time, I had looked awful. I saw my GP the following week and he gave me got an earful for over doing things. So, for the next month I only went in for three half days a week. I managed to keep in touch by e-mail and did the odd spot of work on the computer at home and through the telephone. Whenever I went out - and I was continuing to walk every day I took my mobile phone with me. Most days we drove down to the sea at Friar's Cliff and completed a half hour walk, rewarding ourselves with an ice cream. Pru hated the presence of the phone but it made me feel that I was "available" and could contribute.
By the middle of July I was doing five half days a week. I think I was ready to do more but my GP, the nurse at work and my wife were all wrapping me up in cotton wool. I admit that I was disappointed that I still felt unsteady, a bit like one feels when one has had one drink too many but otherwise I was fine. My GP suggested I should see Anne Davis for a check up. Unfortunately she was on her long summer holiday and it was another month before I got to see her. When I saw her in the second week in August, she told me I was fine and why didn't I just get on with my life! Fortunately, she said this in front of Pru, so I felt that I could get away with going back to work full time.
It was only two weeks before our summer holiday, two weeks with Giles in Washington DC, but I was pleased to return to normal at work. I suffered no ill effects from my return to work and I suspect that, had Anne Davis been available earlier, I would have gone back full time at least two or three weeks earlier. Needless to say, the holiday was wonderful and I returned to work in the middle of September, determined to be "normal".