Raising funds for The Brain Tumour Charity in Graeme's memory.
Our son Graeme was 26 when he was diagnosed with a brain tumour in January 2005. The first sign of any problems was a headache that had not subsided after four days. On Monday, 17th January our GP could not find anything obviously wrong and advised Graeme to rest and take pain-killers but to return or go to hospital if the situation did not improve. Graeme stayed off work until Thursday then decided he felt a little better and drove to work at the Job Centre in Hartlepool about 12 miles away. After only an hour at work Graeme stumbled and fell over. His colleagues decided he looked terrible and drove him home. The next day Graeme had obvious weakness in his left leg, arm and hand and when he saw the GP, he immediately admitted Graeme to hospital.
A CT scan of Graeme's head, carried out that afternoon, showed the presence of something abnormal on the right side of Graeme's brain. Graeme was started on a course of steroids to reduce the inflammation causing his headaches. By Saturday afternoon Graeme's headaches had started to subside and he was transferred to the neurological unit at James Cook University Hospital in Middlesbrough on the Sunday.
An MRI scan showed a tumour and surgery was arranged for Thursday 27th January. After leaving Graeme at 9.30 that morning the day seemed to drag. We returned to the hospital at about 5 pm to see Graeme sitting up in bed looking bright and he greeted us with a wave and a smile. He left hospital on the following Monday and we returned to hear the news of the biopsy on February 3rd. It could not have been worse. The tumour was a Grade 4 Glioblastoma Multiforme; the most aggressive malignant type of brain tumour. This was the most devastating news possible and, worse still, we were told that even if it was removed there was a very high likelihood of it returning.
Several weeks later, Graeme started a course of radiotherapy that entailed daily trips to the hospital. He became tired and lost patches of hair but never lost his fighting spirit or his sense of humour. He shaved his head and being 6'3" tall and, by then, weighing about 17 stone because of the steroids, he looked a scary character. We had a big party for all our friends in May at the end of his treatment and the scan a few weeks later showed the tumour had not subsided.
Graeme was offered the chance of enrolling on a trial that involved him taking daily doses of Temozolomide. This drug was seen by many as being effective in treating high grade brain tumours although at the time this drug had not been fully approved for treatment of brain tumours and many health authorities would not pay for it. We were fortunate that Graeme had been given this chance and also fortunate that the drug was available as capsules that he could take at home. So several cycles of chemotherapy began and in November 2005 we had the first good news: the tumour had shrunk by about 30%. Chemotherapy continued and Graeme started back at work just before Christmas 2005. He initially went in part time and gradually built up to full time over the following months. We were told later that people who had the type of tumour Graeme had did not go back to work. Graeme was the first patient of the neurological team at hospital who had done so. Chemotherapy continued but in February 2006 the tumour had not shrunk any more so a different chemotherapy treatment began. After two cycles of this Graeme had a scan in June 2006 and we were told that the tumour was spreading and no more treatment was available. Graeme had to give up work in July 2006 since he was having more difficulty walking. He had been using a walking stick for several months but he now needed a wheelchair that was provided by Social Services.
Graeme's 28th birthday was on July 29th 2006 and we knew it would be his last. Graeme's sister, Rachel, organised a Cowboy and Indian Party and arranged the hire of a massive tipi. We had over 75 people there and the vast majority had gone to great lengths to dress up. It was a wonderful party and several people slept overnight in the tipi.
During August 2006 Graeme's mobility deteriorated further and he could not see much if anything from his left eye. He still remained positive and never lost his sense of humour. From early September 2006 he was confined to bed and spent a week in Hartlepool Hospice to sort out his medication. When Graeme returned home he was put into a hospital bed that had been delivered to our house for him. He had twice-daily visits from district nurses and we had Marie Curie Nurses staying three nights a week to give us some respite. Graeme's sister, Rachel, who is a solicitor, was working in London at the time and had been told to stay at home as long as she needed and work when she could.
This meant that the three most important people in the world to Graeme were with him during his last weeks. It is so distressing to see your child deteriorate before your eyes and to see a 28 year old young man suffer the indignities of incontinence and eventually total blindness. Despite these difficulties he never once complained about his condition. The only comments he made were funny. On one occasion, a few minutes before some friends arrived, Graeme had made a deposit in his giant nappy. When his friends came in he just said, “welcome to the s**t pit", and smiled. That was typical of Graeme.
The week before Graeme died his medication was being given via a drip since he could not swallow tablets easily. We were told that this happens in the last couple of days but Graeme hung on for over a week despite not eating and hardly drinking anything. He was unable to speak for the last three days and until his last night he did not need any strong pain relief. We were so grateful that he was not in pain. The night before Graeme died a Marie Curie nurse was staying and unknown to us she had called the local hospice out of hours service out twice since Graeme was a bit agitated. At 4.45 a.m. they suggested that we were woken and Rachel and the two of us stayed with Graeme until he slipped away very peacefully at 7.45 a.m. on Friday 27th October 2006.
The day we hoped that we would never see had arrived and we had lost a wonderful son, brother and friend.The friends of Graeme are known as Team Graeme and we have a website where details of our plans and news will be listed. More details about Graeme's story are available on the website and there is a link to an amazing diary kept by Rachel during the last weeks of Graeme's life.
Keith and Anne Turner, Stockton-on-Tees