David, Matthew's father, shares his story

Our son, Matthew Young worked for STIHL in their Camberley warehouse. In September 2009, at the age of 28, he went to his GP with a nagging pain in his left foot; so much so that he was having trouble driving to and from work.

His GP thought it was sciatica and initially prescribed pain killers which didn't seem to help. Mat he went back to the GP who arranged for a MRI scan at Frimley Park Hospital.

The MRI scan and X-rays revealed a tumour in his sacrum at the base of his spine. Within a month the pain had escalated to the extent that he could not sit, lie on his back or walk without being in terrible pain.

The consultant at Frimley Park referred Mat to The Royal Orthopaedic Hospital in Birmingham and after a failed attempt to get him there in the first ambulance, due to inadequate pain control, he eventually arrived in Birmingham.

We stayed there for nearly two weeks whilst Mat was assessed, and treated for pain control. He was sent home to wait for the results of the biopsy but due to the distance and severity of his pain, Mat asked for a telephone consultation instead of returning to Birmingham. He was soon told he had a form of bone cancer and would need chemotherapy, radiotherapy and surgery in the form of a partial sacrectomy, but also he would now be referred to University College London Hospitals (UCLH) in London.

At UCLH another MRI scan was done and a biopsy was arranged at Stanmore. This resulted in a treatment plan for six MAP chemotherapy sessions, followed by surgery and/ or radiotherapy to achieve a cure. The first cycle of chemotherapy started on 8 December 2009 and the last cycle was planned for June 2010. Throughout this course of treatment Mat experienced many complications from the chemotherapy requiring visits to A&E and treatment in the isolation unit. The later stages of the chemo cycles were modified due to the complications Mat was experiencing.

During May 2010 the next part Mat's treatment was discussed and the surgical proposal was for a total sacrectomy as the tumour had at some stage crossed the mid line of the sacrum. This major surgery would have resulted in the loss of key body functions and partial paralysis. There were no guarantees of survival from the procedure itself or from any complications arising after the operation, or indeed of there being no recurrence of the tumour. Mat was shocked and devastated, and declined such surgery.

It was at this stage that the possibility of proton radiotherapy was explored, but as this did not follow the NICE guidelines, we decided to make contact with a number of proton centres in Europe, which resulted in the Paul Sherrer Institute (PSI) in Switzerland offering their services.

Mat went to the PSI for a two month plan of daily proton treatment during September and October 2010. Whilst he was in Switzerland a surgeon in Zurich was asked to review Mat before commencing this treatment. He examined Mat and questioned why his neurofibromatosis type 1 (NF1) had not been mentioned and why there had been a long delay with commencement of chemotherapy?

When Mat was a young child, we had suspected that he might have this condition, but at the time two different GPs did not agree he had enough of the physical signs and so this condition went undiagnosed whilst he was growing up. We had also mentioned this possibility again in Birmingham, but got the same response. As a result of the report from Zurich when Mat returned to UK in late October 2010, he was referred to Guys for the NF1 test which subsequently confirmed that the Zurich surgeon and we, his parents were correct.

In June 2011 another MRI scan was done and a local recurrence was evident - a biopsy confirmed this. The option for a total sacrectomy was reconsidered. Mat's condition was deteriorating and surgery was our only hope but Mat was still very reluctant to go through with it. Before this final decision, another MRI scan in September 2011 revealed that the tumour had spread to other areas and was now inoperable. This left palliative care as the last form of treatment.

This was the second occasion where we had thought we had time to make the right choice but the reality was that we didn't have any time at all due to the speed of the cancer development. Initially some more palliative chemotherapy was given but this did not go well and was abandoned in January 2012. Other forms of pain control were explored. An intra-thaecal pump was fitted but did not appear to significantly alter the pain he was suffering.

Mat came home, the side effects of steroids made him put on a vast amount of weight which impeded his mobility, and he soon developed Lymphoedema and ever increasing pain.

In May 2012 Mat was offered respite care at Phyllis Tuckwell Hospice in Farnham to try and sort out the pain control so he could manage at home. This was becoming impossible, trying drug after drug and Mat becoming completely bedridden and eating less and less. After a three week stay in the hospice, it was decided that Mat should go back to UCLH to have some checks done on the IT pump that had been installed. By all accounts the pump appeared to be working and the dosage was increased again. The pain control team decided his best option would be to withdraw the opiates, and try other drug regimes - Mat suffered awful hallucinations, pain and indignity and was desperate to get home.

Following a sepsis crisis, we were told that Mat only had a matter of hours to live. The team at UCLH had come to the end of the road trying to control the pain. Mat pulled through, and he just wanted to get home, so we requested that he should initially be allowed to return to the hospice.

Mat lived for 6 more weeks, hoping he would get home, but this was not made possible for him.

Sadly Mat died peacefully on 7 September 2012 at the age of 31 after a battle that he, our family and the NHS staff had fought over almost 3 years.

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