Val, Martin's mother, shares his story
Martin needed a ride home from school and lay on the settee saying there was no way he would be able to sit through lessons the next day.
I rang the GP surgery immediately explaining why I needed an appointment straight away. The appointments were full for the day. So I explained that Martin was never normally ill, liked school and was doing really well and that he was in his GCSE first year so didn't want to be missing school if it could be avoided. I asked for his GP to ring me as soon as she could to discuss the situation. Our GP rang back within about half an hour. She said that she would like Martin to see a doctor that same evening because there are some rare conditions that can affect teenage boys, which need to be dealt with quickly. She explained that within the practice the different GPs each took a specialist interest in a different area of medicine so she would like Martin to come in that evening and see the doctor who took a special interest in children's medicine.
The GP who saw Martin that evening examined him carefully but couldn't say what was causing his pain. He took Martin's condition very seriously and asked him to come back in 2 days time In the meantime he would discuss Martin's symptoms with the orthopaedic surgeon at our local hospital.
Two days later we were back at the surgery with Martin's pain under some control with painkillers but definitely still bad. The GP had spoken with the orthopaedic surgeon and manipulated Martin's hip joint in a different way and asked more questions about the pain. He was still not able to give a diagnosis but asked Martin to return in another two days and said he would speak to the orthopaedic surgeon again.
On the next visit the GP said that Martin's pain was caused by a slipped epiphysis and the growing tip at the end of his femour had started to become detached and was causing the pain. It may well settle down of it's own accord and the pain would go away. Alternatively, if it detached completely Martin would be in agonising pain and would have to be taken to casualty immediately for an operation to pin it in place. Treatment was painkillers. An x-ray would not show anything so it should be avoided until the epiphysis actually slipped at which time it would show on an x-ray. I went home and looked up 'slipped epiphysis' on the internet. It seemed to tick all the boxes.
On day 8 the pain disappeared as suddenly as it had begun. Martin went straight back to walking to and from school and to trampolining and kickboxing. He had no pain whatsoever. Martin was 15. He loved his growing independence and social life. He was interested in and knowledgeable about everything. He loved music and he loved to party.
Two months later (April 2005) he went to Holland with a friend's family for a week. When he got back I found his jeans had a tear over the knee. He had crashed in a go-kart. I asked if he was hurt as his jeans had come off so badly. His knee was bruised and scabbed over. It was nothing he said. Martin was never one to make any sort of fuss over such things. He said his hip had ached a bit on the day he did it so maybe that epiphysis was still a bit delicate but it had survived a go-kart crash and he'd had absolutely no pain since that day.
Another three months on (July 2005) we visited my sister in North Carolina and spent the first week driving up to and around the mountains sightseeing. Towards the end of the week Martin said he would be pleased to finish driving around as his hip was beginning to ache if he was in the car for too long. Not enough to take painkillers though. As soon as we stopped touring he was fine again and enjoyed playing golf and tennis and swimming.
In September 2005, seven months on from the original intense pain - the intense pain suddenly returned. I rang the surgery and asked for an appointment to see the doctor who had seen Martin back in February. I was told that that doctor didn't have any appointments for over 48 hours so we would have to see another doctor as they were required to make sure that everyone was seen within 48 hours of asking for an appointment. I asked to see our own GP who had also been involved in February. That was not possible either. So we saw another doctor. Not a regular doctor at our surgery. The slipped epiphysys diagnosis obviously satisfied him. Nothing to do but take stronger painkillers. I asked if physiotherapy could be of any help. He said it might but the waiting list was over three months. I thought it wouldn't be helpful to see someone when the pain was not there at all but if it was going to keep coming back he needed help to deal with it. We agreed that a private physio would be quicker and he wrote out a prescription for stronger pain killers.
I went home and made an appointment with a private physio on that same day. She was very thorough in examining Martin but said she was confused by his condition. She did some things that Martin said made him feel much better. She said that if it really had improved that was fine but that if he had any pain whatsoever by the next morning he should get his hip x-rayed. The next morning the pain had gone completely. He was off out to get on with his life.
Nine months from the start of the first pain (December 2005) we got stuck in a snowstorm on our way north to spend Christmas with family. After 9 hours in the car Martin's hip was aching. No painkillers needed and it was gone by the next day. A full year after the onset of the first severe pain (February 2006) - sudden severe pain. Back to the GP. Another doctor saw him. He read the physio's report on Martin's file. This doctor was worried. He wanted immediate blood tests and x-ray and an appointment with the orthopaedic surgeon by the end of the week. He was on the phone until he got them.
The orthopaedic surgeon looked at the test results and xrays and said he thought Martin had some cysts in his pelvis that would have to be filled with bone grafts. Not too urgent but because the GP was so concerned he would ask for Martin to have an urgent MRI scan. 'Urgent' turned out to be 3 weeks later and thirteen months after it all began. Once he'd had the MRI scan, I had a call from the hospital to say they needed to do another scan to get more information. This time 'urgent' meant the next morning.
Martin's test results were transferred to the Royal National Orthopaedic Hospital in Stanmore where they diagnosed Ewing's sarcoma. Martin's biopsy would confirm the diagnosis, but they knew from what they already had. By this time the primary tumour on Martin's pelvis - near the left hip joint - had spread to his lungs and his scull and the other side of his pelvis. He had had no pain since his last visit to the GP. There was no visible swelling. He would not need painkillers again for pain from the cancer until February 2007 two years after the first sign and two months before he died.
Martin knew the odds. He made a conscious decision to put his trust in his consultant and to do everything that his consultant asked him to do. And he also made it clear that he was going to get on with his life. He asked me to liaise with all the medical staff involved to make both things possible.
In the last year of his life while undergoing chemotherapy and radiotherapy he took his GCSE exams and got mostly A grades. He went to the end of school prom and on holiday to Newquay with his friends to celebrate the end of the exams. He partied through the summer holidays and camped out in the woods. He wrote songs and performed them in his band and lead guitar and backing vocals. He started sixth form college and got an A grade for AS level maths. He learned how to record music in music technology and made recordings of his band and of his brother singing and playing guitar. He had a huge 17th birthday party cramming all his friends into the local village hall. With a small group of friends he organised 'band nights' at a local pub. He followed all the small local bands and also went to Reading Festival, Brixton and Brighton to see the big bands. And Paul McCartney gave him a Gibson Les Paul guitar (through the Make a Wish Foundation) which he played every day. Ten days before he died he was at band practice and then on to a hot tub sleepover. His friends who all knew he had cancer had no idea just how ill he was. He didn't want them to know because he wanted to be able to carry on everything as normal for as long as he could.
People continue to ask how a cancer can be missed for so long. Martin's GPs did everything they could. I believe that the fact that the pain from Ewing sarcoma can disappear completely for months is probably one of the medical profession's best kept secrets. Martin had a total of about 15 days of acute pain during the year it took to correctly diagnose his illness and there was never any visible swelling anywhere on his body. He looked healthy and strong and was fit and active.
I have been back to the internet and even the cancer charities which have websites designed for young people don't say anything about the possibility of the pain of cancer disappearing after it has started. We have been led to believe that this is not known to be a characteristic of other cancers and we don't know how many people with Ewing's have this as a characteristic of their disease and although we have met some people who also had 'undulating' pain. None of the doctors in my GP practice had seen a solid tumour in a child before let alone a case of Ewing sarcoma and the statistics are such that they are unlikely to see another. The orthopaedic consultant had never seen a case of Ewing sarcoma either.
I had no idea that the pain from cancer can disappear after it has started. Everything I had ever read about cancer suggested otherwise. I had never heard of primary bone cancers in young people. And the diagnosis of a slipped epiphysis was convincing so I never looked beyond information about that condition. I think I was like most people in thinking that cancer in children meant leukaemia. Everyone has heard of leukaemia because it is so widely publicised and most people know someone who has raised money for leukaemia research. It's time to make primary bone cancers as universally recognised as leukaemia is. Maybe then kids like Martin will be diagnosed in time to do something about their disease and maybe then significant amounts of money will be raised to get the equivalent success rates for their cancers.