Jude Bissett is a happy woman. Last week she managed to start working from home once more, and even succeeded in fashioning a dinosaur-shaped hat for her children out of a cardboard box. Yet only 15 months ago the 33-year-old had been given the devastating diagnosis of having a brain tumour that was both inoperable and incurable.
The story of how she came to have surgery for her illness after a series of extraordinary setbacks gives a startling insight into the problems faced by patients who are not told about the full range of options for treatment. This is particularly true for people with brain tumours, where there is little published data to show which methods are more likely to succeed.
It was in January 2003 that she collapsed with a seizure while out walking with some friends and their children in the Norfolk countryside. The first fit was treated as something of an anomaly; the second a day later raised serious worries and she was admitted to the Norfolk and Norwich University Hospital, where they quickly diagnosed a brain tumour.
Accompanied by her husband David Mead, she went to Addenbrooke's for a biopsy. 'I saw a registrar who said he couldn't tell me whether I had six months or six years to live. It was such an enormous shock that I couldn't take it in.' A nurse later told her that the tumour might be more fast-growing than they had suspected.
As the couple drove back from Addenbrooke's, they were in a state of shock.
Jude said: 'I think I just went into a state of semi-denial over it. We didn't tell everyone at first and when we did we tended to be a little more upbeat. My family were horrified by the news, but then they began to find out everything that they could about the disease. Having two young children really helped, because you have to just get on with your life rather than dwelling too much on the uncertainties.'
The treatment offered to her was radiotherapy, with chemotherapy as a second option. For another medical opinion, she referred to a doctor at the Royal Marsden Hospital in London, who also told her that radiotherapy was the only way forward, and that she shouldn't delay.
'I had asked both doctors if surgery was possible, because I knew that chemotherapy would be fairly ineffective on a tumour such as mine, but I was told there was absolutely no possibility of that.'
Bissett experienced debilitating side-effects from the radiotherapy. She started to have headaches and vomit, and in early May became extremely ill.
She was admitted back to Addenbrooke's but was not immediately given a scan; instead, she had some steroids.
Two days later, she became comatose and had to undergo an emergency operation, and a scan belatedly showed that a huge cyst had developed on the tumour.
'I don't think I was aware how close to death I came,' she said. She carried on having radiotherapy, with treatment for the cyst, and was told that it had not been as successful as they had hoped.
By now the couple were beginning to despair as her health failed. Either the tumour, or the cyst, or the scarring from radiotherapy was making it difficult for her to walk even a few yards as it had affected her left leg. 'I couldn't even carry my daughter Posy upstairs. At this stage I decided I had to start looking abroad, at whether surgery might be more of an option there.'
By chance someone at Jude's work had heard of a neurosurgeon in London, Henry Marsh, who had gained a reputation for dealing with 'difficult' tumours. He had also pioneered a form of 'awake surgery', in which he operates on patients while they are conscious but under local anaesthetic, so that they can talk to him and help him to see which parts of the brain are connected to the tumour.
In early December last year, she managed to see him and took her scans. To her surprise, he told her that he might be able to remove 85 per cent of the tumour.
'He completely floored me. Nobody before that had ever suggested that surgery might be an option for me,' she said.
In April of this year Jude underwent the four and a half hours operation, which was paid for by her company's medical insurance scheme. Marsh, who had advised her that it carried a 5 per cent risk of leaving her disabled, managed to remove 98 per cent of the tumour. She is now returning to her former state of health, although she still has a limp in her left leg.
'I can understand how difficult it is to diagnose different tumours, and how difficult it is to give people a clear prognosis,' she said this week from her home in the Norfolk countryside. 'But what I cannot understand is why no one told me about the possibility of this "awake surgery".
'Perhaps they didn't do so because it carries a risk of death, and because there is little firm data yet to show whether it's better than radiotherapy, but surely that's my choice as a patient?'
Now Jude can work from home, as a researcher for a management consultancy, in between caring for Posy, now two, and Ned, four. Her time with them is precious and happy. But she wants some answers from Addenbrooke's for what she sees as amounting to a major failure to inform her of all the options.
The Samantha Dickson Trust was set up in memory of a 16-year-old who died of a brain tumour, and it now funds research into tumours. Samantha's mother Angela said: 'We would like to see patients being given far more choice about their treatment. They are not always told about the different forms of chemotherapy, for example.'
A spokeswoman for Addenbrooke's Hospital said yesterday: 'The best treatment for Mrs Bissett as advised by the team was radiotherapy without radical surgery. Any form of major surgery was considered to offer no additional benefit compared to radiotherapy in Mrs Bissett's case, and is known to be associated with a high chance of causing major disability.
'At Mrs Bissett's request, a second opinion was sought from the Royal Marsden Hospital who agreed that radiotherapy was the best course of treatment.'
