Narratives & Stories

Miles' Story

Miles was working in London for Sony Music when he was diagnosed with neuroblastoma at the age of 23.

Story as told by Miles’ father Michael

Until retiring to North Norfolk in 1995, my family and I enjoyed a secure, comfortable lifestyle in the very pleasant commuter village of Brookman’s Park, Hertfordshire, just north of the M25.

My wife and I moved from this village when eldest daughter Amanda married and Lisa and Miles had left home. Although never ‘right’, there had not been any real financial worries for years. Life had, in general, been good. Early retirement promised to continue this enjoyable lifestyle. Looking back now, after all that has happened in the last four yours, our close knit family were probably rather ‘smug’.

That first summer at our new seaside home was idyllic. The sun shone almost non-stop, and the children visited us regularly. My son, Miles had realised his greatest ambition, and was working as a talent scout for rock bands on behalf of Sony Music.

On one visit to us, late one night, Miles drove his car too fast into one of the local road bends, turning it over twice (!!), yet walked away from the accident scene unscathed. As events of the next few years turned out, I have often wondered if it would not have been better for him to have died that night.

Christmas 1995 was spent with all our children at my aged parents home in North London. Christmas Day that year was to be the last normal day in my life.

On Boxing Day, Miles awoke with a severe back pain, so much so that most of the day was spent in the Barnet General Hospital, A & E Department, where painkillers were prescribed. Christmas ended, and we all returned to our respective home, Miles still in some pain.

Throughout January and February, Miles’s pain got steadily worse, and my wife and I seemed to spend most of our time driving between Norfolk and London, trying to get him organised with doctors, etc. No doctor seemed able to diagnose his problem; one even told him there was nothing wrong with him, and he should just get on with his life.

Although they never said as much, I am sure his employer Sony Music must have also by now suspected Miles was imagining his problem, and told him to take two weeks off to sort out his problem. During those two weeks, Miles suddenly became unable to pass urine. He was admitted to the Hammersmith Hospital where a urinary problem was diagnosed, requiring a minor operation. I informed Sony Music, who at once ‘took over’, moving Miles within 2 – 3 hours away from the Hammersmith Hospital into the London Clinic.

Here, at the London Clinic, within 48 hours Miles underwent an MRI. scan which revealed a very large tumour at the base of his spine. This was to be removed during a ten hour operation, involving three specialists, nerve, bowel and bladder. All specialists were optimistic of the outcome.

However, the operation was not a complete success, the tumour being too tied up with his central nervous system. 90 – 95% was removed, and whilst the surgeons were still optimistic for a full recovery, Miles was referred to another specialist at the Cromwell Hospital as soon as convalescence was complete.

The prognosis at this time was for Miles to return to work (and a normal life) within 2 – 3 months. My wife and I had now closed up our home in Norfolk and were renting a property in north London, with Polly, Miles’s partner, a very attractive and extremely capable girl of 22, also in the music industry.

Once in the Cromwell, another very detailed scan took place, and family, Polly and various other friend gathered round Miles’s bedside for the specialist to reveal the results. After a wait which went on for hours, he eventually appeared, stating that a course of chemotherapy would have to take place, and it would not be some 4 – 5 months before life could return to normal. He was very ‘upbeat’, and there was relief all round; the atmosphere became more relaxed.

As he was leaving the room, the specialist requested that I accompany him in order for him to give me his card. Once outside the room, my whole world crashed.

“Things are not really as upbeat as I indicated just now. I am afraid to tell you that your son is very ill indeed”.

The hospital corridors spun around me. For a little while I was unable to speak, when I was able to regain some composure, I choked out “what are his chances?” He looked at me, without attempting a reply. “Are they so-so?” I stuttered hopefully. “Rather less” came his reply.

This episode took about four minutes. If I live to be 150, I know I will never experience a worse four minutes.

To make matters even worse I then had to return the family party at Miles’s bedside (who were by now being very high spirited), knowing that I could not even share this dreadful knowledge with even my wife until we were able to make our way home alone, some 40 minutes later.

And so commenced the worst two years of my life. Of course there was always hope. Miles especially was convinced he would beat the cancer that had been diagnosed – neuro blastoma – a children’s disease, very rare in an adult.

Every day, almost without exception was filled with some enormous drama, any one of which would have ‘knocked me for six’ a few months earlier.

Miles’s quality of life with cancer, was almost non-existent. Forced to use a catheter very early on, he soon lost the use of his legs. He had to undergo the most severe chemotherapy possible for a human being, which just put the disease on ‘hold’ for a short period, and when he was unable to received more ‘chemo’, the cancer then spread like a grass-fire.

Meeting after meeting was held with various specialists, and each time results of tests proved that Miles’s condition was always slightly worse than my worse fears.

Often, at times when he was at home and not in The Cromwell I would have to go in his room in the middle of the night, where he was sobbing uncontrollably “just because I have cancer”, myself being unable to find any words that would pacify him.

Polly, his girlfriend, and his many work and old school pals were totally supportive. Sony Music were fantastic, keeping him in day to day touch with the work place, they must have known he would never see again. They even sent him to New York (with his sister Lisa as nurse/helper) to seek alternative treatment, Richard Branson of Virgin, kindly donating two first-class return tickets. This treatment was however to no avail. His bones became more and more brittle and when he died on the morning of February 3rd 1998, having been virtually bedridden for the last year, he had a broken rib cage, both shoulder blades broken, and a broken arm.

My wife and I had been with him all night, together with four of his closest friends. During those two long years of nursing my son, I had this terrible fear of becoming ill or somehow incapacitated myself, preventing me from attending him. Somehow I managed to find the inner resources to meet each dreadful day.

Parents who have lost adult children in accidents I know will find it hard to appreciated the enormous sense of relief, and almost exhilaration when Miles died. He had suffered certainly as much as any human being every has suffered, and it was suddenly very wonderful to know that he would suffer no more.

This feeling (also shared by my wife) lasted about two months, before depression set in – a depression that has not left me since.

Each day I am haunted, not so much by his death, but by his tragic life. Despite the fact that he is no longer suffering, the slightest thing can trigger off in my mind some event or circumstance of those two long years, and send me spiralling downwards. Miles is always in my thoughts. If one sees life as a TV screen, then those traumatic events occupy 65% of that screen.

I feel the average person is completely unable to appreciate what losing a child is like. I am inclined to lose my temper when people say (and so many do) – “I know just what it’s like, I lost my old dad last year – he was 92!” I am only really at ease when in the company of similar parents (with the group ‘Compassionate Friends’ for instance).

If I ever had a fear of death (I can’t remember) I certainly have no such fear now. I tend to live life for the present, as one never knows what is round the corner. I tend never to think about the past, that is, the years before my son became ill; I guess it is because I was living with a time bomb. I can no longer read a book. I dread bed-time each night, as I can never get to sleep, and when I do, it is never for more than two hours.

In my mental healing process, I know one day I will have to deal with my son’s death. Meanwhile it is as much as I can do to deal with the memory of his tragic life.

If a doctor came to me and said, “just take these tablets and your grief will go away”, I know there is no way I would take that treatment – I know that I need my grief as much as I need air to breath.

Michael

Miles’ Story as told by his mother, Brenda

It is just over two years since our son Miles died at age 25 years from a cancerous tumour called ‘neuroblastoma’. I still feel mentally and physically drained by two years of caring for him, knowing that whatever we did we would not be able to save his life. I would like to tell you about some of the many problems we faced and the courage we witnessed in our son during this trauma.

My husband and I had seen two daughters into successful careers and the setting up of their own homes. Miles our youngest child was 23 years old and was living with his girlfriend in London. They were both in the music business and extremely happy with exciting jobs and busy lifestyles. We decided that now was the time to take early retirement and sell our large family house. With the children’s blessing we came to live on the North Norfolk coast to a seaside town where we had spent many happy holidays when they were small.

Our first year here was wonderful but then our son started getting health problems, mainly intermittent but very severe backache and we began to experience unease and genuine worries about not being close at hand to him. Things would appear normal for a while and then we would receive another desperate phone call when my son would be screaming with pain down the telephone to me. I was frantic with worry particularly as he was not registered with a GP. He had recently moved flats and had been much too busy to bother with such things. I had been nagging him to register with a local doctor for some time – not easy when for the first time it was his responsibility and not mine! He had visited the accident and emergency departments of several hospitals throughout the UK whilst travelling for his job with Sony Music. They all could find no cause for the pain and only prescribed pain killers. After one gruelling phone call we travelled down to London to try and sort things out. I managed to get him into a new GP who had more x-rays taken and reassured us that whatever was the cause of the pain it was not serious. We returned home but in a short space of time things only got worse and when we went back again I was shocked at the way Miles looked and the weight he had lost but still could not get anywhere with his GP. I now realise that an MRI scan would have immediately shown up the tumour. I had the feeling that he thought I was an over-anxious and protective mother and even my son was getting fed up with me fussing around. Once again although extremely concerned we drove back to Norfolk. We had not been back long when Polly, Miles’s girlfriend phoned to tell us he had been crying in agony all night and was now admitted into hospital. Back we rushed to London, moved in with my mother-in-law and some days later, after tests and scans, we were told that a massive tumour had been found at the base of the spine. After a ten hour operation which could not remove all the tumour, we began as a family a two year hell of caring for Miles and witnessing the most appalling pain and suffering in a young man. We had to rent a small house and when my son was well enough to leave hospital, we took him there and with his girlfriend looked after him with hospice help.

I will try and list the particular difficulties which I as a mother endured during this dreadful time:-

1. Although reeling from the shock of being told he was terminally ill, I was adamant that I did not want my son to know he was dying. As he was technically an adult this was a constant battle in the early stages to persuade his consultant, hospital medical team, hospice staff, district nurse, etc. that I was right to take this course. I however, was convinced that it was the only way to get him through it. Had he not been confident of a cure he could never have got through the dreadful weeks of chemotherapy, radiotherapy, and isolation treatment he had to endure. He hated it when a counsellor showed him too much compassion in the hospital. He said she was “like the kiss of death” and refused to see her again. We persuaded him to be admitted to a local hospice for a couple of days since he was still in unbearable pain which made him yell uncontrollably at times. I was finding his anguish and agony so very difficult to watch and the hospice was sure that with the correct drugs they could alleviate some of the pain. However, the elderly dying patients around him had a very depressing effect on him. He never thought he would die in these early days and I knew that once he lost his will to fight on we would never be able to deal with his increasing moods and depression. I did win my case in the end but was always worried that some well-meaning medic would tell him that his was a hopeless case.
2. Miles absolutely refused to use a wheelchair. I believe this was very much to do with this special age group. For a formerly ‘macho’ young chap to be suddenly needing so much help from parents much have been degrading in his eyes. As time progressed he lost the use of his legs and could only take a few painful steps with the use of crutches. Getting him to the hospital in London, often on a daily basis, became a nightmare. We learnt not even to mention the word ‘wheelchair’ as he would fly into a rage. My poor husband who hated driving in London traffic had to park on double yellow lines whilst I endeavoured to help Miles from the car by the hospital, whilst my husband tried to re-park often streets away. He then would tear back to the hospital and try and find us. In the meantime I would be desperately willing Miles the strength to hobble to the hospital. People would stare at us in disbelief and embarrassment but to Miles a wheelchair was for “little kids or old people”. He would argue about using one with nurses and doctors who always had to let him have his way. I gradually came to learn that he needed to have this little bit of control over his life and it was not just a matter of being awkward. Many times I was convinced he would lose his balance on the shiny hospital floors.
3. His now increasing size and weight. My skinny boy had now, due to the drugs, grown into a huge weight. He never lost his handsome looks and was always a hit with the young nurses who adored him but getting him into bed, onto a chair or into the bath and toilet became an ever increasing problem.
4. The dilemma of what to tell his company. Sony Music were a fabulous employer to Miles. They always sent presents, flowers, books, wine, fruit, etc. They sent minutes of meetings and kept him in touch with work all along the way. He was always intending to go back but on the day would be unable to get dressed and be so depressed again. There was so much more he wanted to do for them. As it was he listened to tapes for them which he loved doing but kept telling them he would be back soon. We desperately needed his salary towards the growing cost of caring for him and rent, etc., as we were running two homes. Nevertheless we were very concerned about withholding the fact that he was terminally ill. When we finally made up our minds that we should tell the company they were marvellous and so very understanding of our predicament. It was a great weight off our minds.
5. The amount of money Miles was spending on telephone and alternative medicines. Miles was doing a lot of research into his illness before he became too ill to care. He was determined to try every alternative “cure” possible. Whilst this kept him motivated and positive I do think that a few people take advantage of this and we watched our son send hundreds of pounds to a doctor in America in return for boxes of natural pills and medicines which were supposed to give him vitamins and supplements to fight cancer. If he ever detected our criticism or concern that he was being duped he would get angry with us for being negative. It became easier just to let him send off the money even though I was worried that he was getting into debt. The amount of phone calls he made also became a source of worry. Sometimes he would be on the phone all day long as this was a good way of passing his long days of inactivity. I think he came to loose all consideration of mundane matters like money and became consumed with the battle of survival. In many ways he became childish with his frustration with the constraints of his illness. Sometimes, he would yell at us to stop fussing around him, that he had once been self-sufficient. He would then feel guilty and I would curse that we were all trapped in this “no win” situation.
6. Always being late for hospital appointments. Keeping to schedules and times for treatments became increasingly difficult Miles became impossible to wake up in the mornings due to increased amounts of drugs. We would wake him in time to keep an appointment only for him to fall into a deep trance-like sleep again. He was unable to dress himself or did not want any help. Often he had soiled himself during the night and woken up demoralised. With a young child, a parent can make light of such things but in our case we were always “treading on hot coals”. By the time we reached home again in the evening after poor Miles receiving more invasive treatment we were all physically and mentally exhausted. I then had to prepare the evening meal which we always had very late and knew the next day we would have to do it all over again. Sometimes I would stay at home to keep up with the now daily need for clean bed linen. Also the drugs gave Miles an unnaturally large appetite and this way I could have a nutritious meal on the table for when they returned. Taking him was really a “two man” job though. After some time we made friends with the hospital doorman who would take over the parking of our car for us. However we would have to give a large tip and we would anxiously seeing our savings deplete. The petrol to and from London was expensive on top of everything else.
7. Miles’s girlfriend had to move out. After some months the inevitable happened and our son’s girlfriend who had been a tower of strength could no longer cope with the situation. For her own survival and to carry on the demands of her own career she had to move into a flat with a girlfriend. She had been a wonderful help to him and us but of course had become bowed down by the caring. In some ways that became a little easier for my husband and me as we were always having to go out in the evenings or stay in our bedroom to give them a little private time together when she came home from work. Miles knew that whatever the outcome of cancer he would never be able to have a sexual relationship again. At only 23 years of age that must have been an awesome prospect. Also he knew he would always be stuck with a catheter and major bowel problems. In spite of this he was always positive and showed immense courage and a strength of character which surprised us all. We had some great laughs together as he had a wicked sense of humour and I will always treasure those two years we spent with him. We nursed him to the end with wonderful support from young hospice workers.

Now, two years on my grief and memories are as acute and painful as ever. I feel stressed and very incomplete but am so grateful to have two other children and my husband

Brenda